| The Amazing Story Of Kaleb......... |
Born: 2-23-95 Gods Angel: 12-5-05
This is the true story of my grandson Kaleb. It has tales of heartache, happiness, alot of tears
and most important how God's hand has kept us and Kaleb, after the doctors could do no
more to save this very cherished child that we love so dearly. My hopes in writing this book is
to let you know that God is still the same God that spoke with Moses, split the waters, and
walks with each of us everyday. It is only by the love and grace of God that each of us rise
in the morning and lay back down each night. I have seen his mighty hand move so many
times in the last five years, since Kaleb came into our lives.
To my Grandson Kaleb, I love you more than I thought I was capable of ever loving anyone.
You brought the sunshine back to my world when you were born. I look at you now and I still
see my Kaleb. I at times late at night can almost hear your laughter when its just you and
me in the room. I still kiss your little button nose like I've done so many times since your birth.
I pray every night for God to please let you wake up and come back to Nena and Papa. I
know that our heavenly Fathers will must done. I still pray that this is his will. But even if he
calls you on home I know you will be in a better place and I will see you again one day. You
are still my special boy. I love you too, Kaleb.
Love Always,
Nena
The following was written over the years beginning in 1998.
CHAPTER ONE
THAT VERY MOMENT....
I had been mad at God for a few years, I blamed God for alot of pain that had came into
mine and my children's life. I was raised by a good God fearing mother, who had raised me
to put all my faith not in man but in our heavenly Father. But it is hard to remain faithful
when so many bad things happen in your life. And God will let us run... but when he is ready
to deal with us he will get our attention. Sometimes like he had to get mine. With someone
you love.
Here we were in the delivery room of this small hospital, my grandson was just about to
arrive. I was so afraid and happy all at the same moment. When they held him up I fell in
love with Kaleb at first sight. He was so perfect, so tiny, and the happiness I had needed for
a very long time to come into my life. It was like the sun rose in my life at well past midnight.
He pushed all my hardness, un trusting, and bitterness away in one moment. I was like a child
on Christmas morning. I stayed until almost day light rocking and getting to know this baby
boy. I went home to sleep only a couple of hours before returning to the hospital to spend
more time with Kaleb.
It was that afternoon that I noticed that Kale's little mouth looked blue, under his fingernails
looked blue. My daughter asked the nurse about the babies color, she replied that some
babies have more trouble maintaining body temperature and that we should keep him bundled
in a blanket. But no matter how much we bundled, Kaleb's color did not improve. I left the
hospital that night feeling a little nervous, but assured that the nurse knew what she was
talking about. I slept good that night, tomorrow Kaleb was coming home!
CHAPTER TWO
A VERY BAD DREAM....
The day was like spring, the air was crisp and fresh. The sun felt warmer than ever before. I
had started early that morning recleaning Kaleb's room to bring him home. Shortly after noon,
my father-n-law came. He said that he was there to take me to the hospital, my daughter had
called him and said something was wrong and she needed me! While putting on my shoes I
was saying how I was sure there was really nothing wrong. My daughter was a new mother,
she was just nervous and needed me to calm her fears. Looking back I was trying to calm the
fears inside of me.
When I walked into Angel's room I had felt those fears intensify. Kaleb was gone, Angel was
sitting there in tears, I told her she had to tell me exactly what had happened. I saw the terror
in her eyes as she began to talk. She kept saying they came and took Kaleb and they
haven't brought him back, he has been gone a long time. Who took Kaleb I remember saying.
The nurse was her reply and they will not tell me what's going on. I got up and told her I
would find out what was going on as I left her room. At the nurses station I found no one. I
stood there so dazed. Had someone pretended to be a nurse and walked out with our baby? I
had seen that on T.V. more than once over the years. My fears suddenly deepened. I ran
thru the double doors that led to the labor and delivery rooms. As I entered I found a nurse,
she grabbed my arm as I tried to explain which baby I was looking for. She said I needed to
go back to my daughters room, the baby was VERY sick and that the doctor would come and
talk to us as soon as he had Kaleb stabilized... STABILIZED... I turned to her and with a
demanding voice that did not sound like mine but someone who may have just had the wind
knocked out of them, I shouted I was not going anywhere till I saw my grandson. I could not
go back to Angel until I saw him with my own eyes! I needed to be able to comfort my child
and tell her everything would be alright, that's what a mother is suppose to do. That's what my
own mother had done so many times in my life! At that moment I was in shock... the world
had just crashed down around me. The nurse said to wait and she would see what she could
do. I did not wait, I followed her into a room where just two days earlier I was rocking this
child for the first time.
Now as I looked in the room doctor's and nurses were all around what must have been Kaleb.
The nurse turned and saw me and told me I would have to wait in the hall... but my eyes had
found Kaleb between the crowd. But this baby was blue and black, this baby looked dead. A
doctor must have seen the fear on my face because he took my arm and moved me to the
corner of the room. My eyes were froze on the area where I a moment earlier had seen our
baby, only now all I could see was the back of someone in the crowded room. I did not hear
one word this man had said. The nurse lead me out of the room, I could not even feel my
feet and legs moving. I came back to myself when she kept saying my daughter needed me.
What was I going to tell my child? How could I comfort her now? The baby I had just seen
was not going home to sleep in his bed, I had seen that in all their faces! A doctor came up
behind me and interrupted these thoughts by saying something about a major heart problem of
some kind... I felt as if the floor was sucking me up like in those old horror stories you see
late at night. His next statement was " You need to tell your daughter that this baby is NOT
going to make it " I can still hear him saying that like it was yesterday.
That's when my spiritual up bring kicked in , it's like an assurance came over me. I told him I
was not telling Angel that about her baby... " Your not God ! " I remember saying. You are not
in control of life or death, I told him I knew the man that made Kaleb's little heart and I would
not put my trust in a doctor ... he was just a man. I then told him to transfer Kaleb to a
bigger hospital where he could get the care he needed. I did not care where we had to go.
He gave me his opinion and walked back into the room where Kaleb was being worked on.
That became the first opinion from a medical professional that we have had to hear so often
over the last four years ... " you have to be realistic, I do not want to give you false hope ."
I turned to the nurse and asked her if she believed that Jesus had came to this earth and
died for our sins. She looked at me and simply answered yes. I then asked her if she
believed that if two agree on earth touching any thing , that they could ask and it would be
done for them by our heavenly Father? She again answered yes. I then told her that I needed
to know if she believed in divine healing ... again she said yes. I then asked her if she would
go and lay hands on my grandson and believe that God would heal with me. She shook her
head yes this time. I told her that I had to pray for Kaleb before I could talk with my
daughter. While she was gone to ask if we could pray for Kaleb, I began to talk to God. For
the first time in a couple of years I was getting back in touch with the Lord ... or was he
getting back in touch with me ? I know that I ask him back into my life , I prayed for him to
help me face what was going on in my life . I felt a peace come over me , I felt God
comforting me in my time of need . All my life I had heard the preachers talk about it , my
mother had told me about it but until that moment I had never felt Gods arms wrap around me
. I believed in him , I just did not think that I would really ever feel like this . All of a sudden
everything my mother had ever taught me became real ! I was important to God , he did care
about me. He was in control. All the thing's that I had just heard myself say were REAL.
The nurse motioned for me to come in , when I was by Kaleb's side , seeing him like this was
so hard. Then the devil tried to fill me with fear and doubt. There were so many tubes and
needles in this tiny child , the only place I could see to touch him was on his shoulder . I
closed my eyes and began praying a prayer like my mother would have prayed. I first cast
satan away from me and Kaleb , I told him to get behind me in the name of Jesus. Then I ask
God to touch Kaleb in the name of his son Jesus Christ , that's all I knew to say. Then I just
started thanking him for saving me and hearing my prayer. I felt a warm feeling in my hand go
into Kaleb. It was a feeling that I can't really explain. I just knew that the Lord had touched
Kaleb. It was then time to go and tell my daughter. I asked the Lord to give me the words I
needed to give her this new's. I did not have very long because Kaleb was almost ready to be
transferred to the other hospital. I remember before I told her about Kaleb , I said it was bad
but she had to believe that God could heal him. And that no matter how bad the doctors said
it was that she would have to remain strong and put her faith not in man but in God. She
promised me she would. Then they brought the baby in for her to say goodbye , but our
entire family that was there held hands around her and this baby and prayed. We did not say
any last goodbyes , I knew in my heart that it was not time for that.
I had to believe.
Proverbs 3 : 5 , 6
Trust in the Lord with all thine heart
and lean not unto thine own understanding.
In all thy ways acknowledge him , and he shall direct thy paths.
CHAPTER THREE
IN THE DARKNESS
The lights were flashing and then they turned on the siren, this suddenly became real to me.
This was not a dream, my heart was breaking inside. That sound made my body go cold. We
were in the car going across town to the bigger hospital, I looked over at my husband and
started crying and said God just can not take this baby. I started asking God to please take
me... I have lived my life, he has not even started his. Then it came to me that I had not had
a chance to sing Jesus loves me to Kaleb, I had sang that to all three of my children. I had
not had the chance to cuddle up in the bed with Kaleb and smell that fragrance that only
babies have.
I came back out of my thoughts when we arrived at the hospital. We asked where to go, then
ended up in a waiting room. They had told us that as soon as some test were ran the doctor
would talk to us. It seemed like forever before the nurse came and took us to a conference
room to wait on the doctor. My brother, sister-n-law, husband and I did not speak a word as
we waited. I think we were all talking to the Lord with all of our inner soul.
The man that walked into the room was in his early forties, he carried himself well. All eyes
were on him. I knew in my heart that what this man was about to tell us would change our
lives forever. I was impressed and comforted with the way in which he started his meeting with
us. He said that before he gave us his findings he would like to pray with us if we did not
mind. I told him we welcomed prayer.
I knew at that moment that we had not came to meet this doctor by accident. The Lord had
used this man to let me truly know that he had heard my prayer.
His name is Dr. Ben Horne, he said the sweetest prayer that night. He prayed for God to give
us strength, and to comfort us in the up coming days. Then he took out a pencil and paper
and started explaining Kaleb's heart problem. The name for his defect is Hyperplasic Left
Heart... which means half a heart. One side had never developed in the womb. He explained
that Kaleb would have to be flown to Charleston, S.C. to have surgery. That it would be
daylight at the soonest to have him flown down. Then he said that Kaleb's veins were
collapsing and that if this last vein in his head did not hold up until the surgery that they
would not be able to help Kaleb. Kaleb did not have the valve going from the heart to the
lungs that supplies oxygen to the blood. The medicine that they were giving Kaleb was
keeping the hole opened that closes up anywhere from two to five days after birth. Without
this hole opened Kaleb did not have a chance for survival, since he did not have the valve
there to allow the blood to flow into the lungs.
After he had explained and answered our questions I asked to see Kaleb before going back to
check on my daughter. I can not remember if I have ever thanked him for taking the time to
pray with us, but over the last four years I have trusted in this man's oppinion more than any
other doctor involved with Kaleb's care. I guess because he does not lean to his on
understanding, instead placing these tiny babies where they belong in God's hands.
I looked at my husband as we were washing up to go in the I.C.U. and said " God don't make
no Junk..." we in years earlier had seen a poster that had said that. God just brought that
poster back to my memory at that minute. He knew I needed that before I walked in that room.
There were babies everywhere, I never knew so many babies were born so sick. A nurse lead
us over to Kaleb. He was so blue, his little body had tubes and lines everywhere. I prayed for
Kaleb silently this time and attempted to sing Jesus loves you to him. But the tears were
streaming down my face. God, please give me the chance to teach this child about you! Let
me rock him and sing to him, let me hear him laugh, see him grow. I made a covenant to the
Lord that if he would spare Kaleb I would testify of the miracle we had received. I promised to
take Kaleb to church. Please do not take him so soon, let him live I prayed. I stroked Kaleb's
head and told him I had to go see his moma but I would be back.
By the time I got back to my daughter she had cried so much that her eyes were swollen
shut. The doctor had already called her and explained everything to her. She had been left all
alone. She demanded that my husband remove all the babies things from the room, he just
looked at me. I told him to go ahead and place Kaleb's things in the car. After Keith had left
the room she started crying and said she could not look at the babies stuff. She expressed
the fear of never seeing Kaleb alive again. I told her she had to put her trust in the Lord.
She then asked me to go back with Kaleb so I could be with him and let her know how he
did during the night. Before leaving I went to the nurse and told her my daughter needed to
be knocked out, I could not leave her so upset, but I did need to go back to the baby. I was
so torn between my child and her child.
We were back on our way across town when it hit me I had not told my mother about the
baby. She had not seen the baby due to falling the day his mother had went in labor. She
had hurt her back and was having trouble getting around. I must go tell moma I told my
husband. The daughter in me started coming back now. I needed my mother to tell me it
would be alright. I wanted her to see Kaleb, her great-grandson just in case he did not live.
That was very important to me. I told Keith we had to find my mother. Then I resumed my
silent prayer to God, begging for Kaleb to live. By this time it was around 3:00 am, I still had
to see my mother. I needed her to pray. I believed in her prayers. I wanted my moma to
make everything alright, the way she always did when I was a child. I was frantic by the time I
knocked on her door. When the door opened I think I fell more than walked in. I said " Moma,
they said our baby might not live. " That's all I could get out before falling on my knees at
her feet. I placed my head in her lap and remember saying "Moma please ask God to take
me... not Kaleb, he is just a baby, he does not deserve to die. "Please moma P L E A S E...
"She started praying for God to ease my pain and comfort me. After a few minutes I felt so
much better. I asked her to please come see Kaleb, to lay hands on him and stand with me.
Even in pain she agreed to go. I had to help her dress because her back injury prevented
her from lifting her arms above her head.
We were again in the car on our way to see Kaleb.
Mark 11:23
For verily I say unto you, That whosoever shall say unto this mountain, Be thou removed, and
be cast into the sea; and shall not doubt in his heart, but shall believe that those things which
he saith shall come to pass; he shall have whatsoever he saith.
We have to hold on to God when everything is crumbling down around us. We must remain
faithful, our hope lies in our heavenly Father. No matter how dark it gets you have to trust in
the Lord! If you give up you are cheating yourself out of a MIRACLE... God always honors his
word. We sometimes look at the modern world and we think that people know more than God.
Where ever your at right now, whatever your problem is God knew before you were born. God
will be your problem solver, he will be your comforter, he will meet every need. Ask him.
CHAPTER FOUR
GIVING IT TO GOD....
I heard a story told once about a child asking his father to please fix his favorite toy, the boy
would not fully release the toy so the man could fix it, the story was used as an example of
how our heavenly Father must feel when we don't give him our broken lives and let go so he
can work.
It was when I stopped telling God what he needed to do, and said "your will be done" that
Kaleb began to fight to live. He was flown to Charleston the next day, he underwent his first
heart surgery at five days old. He did so well that on March 11, 1995 the Lord let us take
Kaleb home. It was on a Saturday. And the next morning I kept my promise to the Lord, I
took Kaleb to church. I told of the miracle that we had received.
I spent many hours rocking Kaleb and singing to him, I cuddled with this special child and
smelled that sweet infant smell. I was very thankful to the Lord for allowing us to love this
child. He loved the outdoors, he would cry until we bundled him up and took him out in the
March air. He would look at me with such a deep intense look that I now understand that we
are bound together spiritually. Kaleb brought the innocence of life back into my world. We
spent many hours together just enjoying the simple things of this life. Money was not as
important as it had been before. I was in our world not the rat race anymore. Kaleb has made
me a better person, he is responsible for me being able to love life and people again.
The next three and a half years were the best years of my life. Kaleb spent alot of time with
me and his Papa. We could ask him what was he and he would reply "NENA"S SPECIAL
BOY!" so sweet, and a little spoiled. He would go across the country in our Peterbuilt and
make every step his Pa made. He was a little truck driver, or so he thought. We would have
to make him stay home with his Moma and new little brother. Kaleb has been everywhere, he
saw the United States from the windshield of a big rig. He loved the attention that all the other
truckers gave him. That's what makes it so much easier to deal with Kaleb's condition now, we
gave Kaleb all the love and the best life as we could. We did not keep him locked inside like
a sick child. I knew the Lord was taking care of Kaleb.
Sitting here now I have so many special memories, his eyes the first time he held a frog, me
and him sitting by the window watching the red and blue birds eating from the feeder, planting
flowers together. The three of us cuddled up in bed, Kaleb, Papa and Nena in our little world.
We were so bonded, Kaleb was our world. If we weren't with Kaleb we were making plans to
be with Kaleb.
When Kaleb had been home from his first surgery about three weeks the Lord gave me a
poem one early morning. I had just finished feeding him and he was laying there in my arms
as the sun was rising on another spring day the Lord had given us. I could not hold back
the tears that morning, I was so thankful to be holding this special gift from God. The room
was so quite, the only sound was that of the little boy with half a heart cooing in my arms.
THRU KALEB'S EYES
An Angel sent from above, he's brought to me such a love. Thru his eyes of blue, I now see
that my God is really true.
His little heart has had to fight to stay here in this life, but when he smiles my day becomes
so bright. And once again I thank the Lord for shining his mighty light.
At first I was sad to think my first grandson wasn't alright, but soon I said Lord have your will
and Kaleb began to fight. A half a heart is all he has, but I know he will be alright, cause
God is holding him in his hand and Kaleb's holding on real tight. Everyday is precious now
not like the one before, cause thru Kaleb's eyes I see the wonders of our Lord. If he should
ever go to sleep never to awake, I'll know he served a purpose by coming to this place,
Cause thru Kaleb's eyes his Nena learned of Gods AMAZING GRACE...
Kaleb's Nena
April, 1995
Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find
grace to help in time of need.
Hebrews 4:16
CHAPTER FIVE
MEMORIES OF KALEB
The first Christmas with Kaleb was so special, he loved the excitement.
His first birthday, feeding his Papa chocolate cake. His first word was "Papa", his first sentence
was " Bye-Bye Papa". His favorite song was Amazing Grace, I could turn it on and he would
raise his little hand and wave it to the Lord. He was always such a spiritual child. You could
feel the presence of Angel's around Kaleb. I have pictures of me and him together where you
can see a glow all around him.
I remember the first time I was going to let Kaleb smell flowers in the yard, he smelled then
took a bite. It was so sweet this little boy to me. By the time Kaleb was one and half years
old it was time for his second heart surgery, I prayed for weeks for God to guide the surgeon.
I prayed for him to let us keep Kaleb a little while longer. Once again Kaleb came right back.
After this surgery he became stronger and started to walk. He would sing little songs, one I
thought was so cute was "row, row, row your boat." little hands turning and stretching out. He
was such a joy to be around. I could tell Kaleb to slow down that he was a sick baby and he
would reply " NOT sick Nena!" I finally decided since he did not think he was sick I shouldn't
try and tell him that. I had to let him be a little boy. He would run and play and when he
would get tired he would come get in your lap and rest for awhile. Always laughing and
finding something to do. You could say show me your "trouble" look and he would roll his
eyes away and give you a slight grin. He loved for his Papa to take him for a walk, they
would leave hand in hand and return with Papa holding him in his arms. Kaleb tried but
before making it home he would get so tired. If it was raining outside and Papa would say no
walk today its raining, Kaleb would get so upset and say "NOT raining Papa!" Even after we
showed him the rain. He was very strong willed, I guess he had to be, to overcome what he
had to.
He would cry to watch a preacher on T.V., we finally got to the point that if we turned it on
we would ask him if he wanted cartoons or "Jesus" it was usually "Jesus". He loved to watch
Benny Hinn. He would always say "Jesus make them better", I asked him once if Jesus was
going to make Kaleb better? He replied "Jesus make my heart better". Well now the Doctors
say Kaleb's heart could last twenty years just like it is. I guess Jesus did make his heart better.
Kaleb loved his little brother, when we were anywhere and he would get something he would
always say "brother one too!" He was a very good big brother. He made sure Joshua had a
drink and cookie most all the time. He started asking for a "baby sister" not long after Joshua
was born. We kept telling him he was not getting a baby sister. We even went so far as to
buy a dog and name her baby sister to try and please him. Kaleb's baby sister was born
March 22, 1999. I guess he knew alot about what the future held for us and him. He would tell
us things that we would wonder what had made him say it. He was a very surprising little boy.
I loved to just look at the stars with Kaleb, his little arms around my neck. I would sing twinkle
little star over and over, but when I would stop he would say "sing it Nena." If he could just
ask me now I would never get to tired to sing it again! I guess he and I would still be singing
to the stars as the sun rose in the morning. But I try not to wish for what I had with Kaleb or
question God about this empty feeling I have without him now, Cause this is all Gods business
not mine. I thank the Lord for everyday I get to stroke his head, kiss his little nose and take
care of the needs Kaleb now has. Its a labor of love, a honor to still be able to smell him
and feel him in my arms. God is so good to us. He helps me everyday to get up and face
the day . If I looked at the situation I would have never made it this long. I hold on to God,
and keep the Faith that a miracle will come. If not in healing , Kaleb going on to his everlasting
life. To never know pain again, to never cry or suffer this cruel world we are in. I believe our
heavenly Fathers will is going to be done, and I know because of Kaleb many peoples lives
have and will change. Kalebs story is to be told so people can believe again, have faith again
and trust in the Lord again. He can change things that look impossible. He is bigger than any
problem we could ever have. All he wants is you to reach out to him, and to let him turn
things back around for you. Trust him, have Faith in him and watch your mountain move!
Ecclesiastes 3:1
To everything there is a season, and a time to every purpose under the heaven....
CHAPTER SIX
" THAT'S , HEAVEN ! ! "
After Kalebs heart catherization, the doctors decided "we need to go ahead and get this last
surgery out of the way" so the date was set for June 9, 1998. It was almost at that moment
that I noticed the uneasy feeling that started haunting me. I would wake up crying for Kaleb, I
would pray for the Lord to let everything be all right, but in my gut I knew things would never
be the same for us or Kaleb.
Being an over the road truck driver, over the years I had made contacts with different people.
I had always told people about Kaleb and the miracle God had given us. One lady lived in
Longveiw, TX. She had a base C.B. radio in her home, she goes by the handle blue waters.
The first time I spoke with her was about three months before Kaleb's last surgery. Early one
morning, before sunrise I heard her come over the radio and break the silence of the highway
and the night. She was saying Jesus loves you and he cares about our life. I reached for the
mike and began talking to this stranger in the night. We only talked for a few minutes before
I was losing my signal with her. I promised to talk with her on my way back through Texas in a
couple of days. We started a friendship over the radio, every couple of days when passing by
I would call her name and she would come back and talk to me. We talked about my life on
the road, my grown children and we talked alot about Kaleb. I told her one day about my
fears and the next procedure for Kaleb. I asked her to pray about it and let me know if the
Lord showed her anything. We said our goodbyes and I drove on into the night. I spent many
hours behind the wheel crying and praying about Kaleb. I would get up in the afternoon and
get up front and express my fears with my husband while riding down the road. He would
always tell me everything would be alright. Then about a week later going through Longveiw, I
called out for "Blue Waters", she came back to me and ask me to find a place to pull over
that she needed to talk to me. I pulled into a little truck stop that we stopped at a lot that
had some good country cooking. My husband went in to get some food and I went back on
the radio to talk to my friend.
She started telling me she had ask her pastor and church to pray for Kaleb, then she said
that a few days earlier while at church the pastor had told her to tell me that sometimes
Gods will is not what we have been praying for. She told me that she had not had a good
feeling when she prayed for Kaleb. I suddenly had heard all I wanted to hear. I was polite and
told her to continue to pray for all of us and told her I would talk to her later.
I sat in the truck telling myself I could not listen to someone who did not know Kaleb or me!
My husband came back, we ate our supper as I told him what she had said. Then I told him
that I just could not accept that God was going to allow something to happen to Kaleb since
he had brought him so far since birth. I also kept telling myself this was the last surgery! I
had to believe that everything would be like the other surgeries, Kaleb would be alright. But in
my heart I knew that was not true. I even told my daughter that things were not going to be
like all the other times. She ask me if I thought that Kaleb was going to die. I told her I did
not think he was going to die but that life as we knew it would not be the same.
I continued to pray about my fears and held out hope that I was just so afraid of losing
Kaleb, that's why I felt this way I convinced myself. I started saying almost daily that everything
was going to go well... I hoped.
On one of Kalebs last trips with us on the truck instead of going to California, we had a load
with one drop in Portland Or. and another drop in Seattle, WA. Kaleb loved to be on the
truck, he would make his Papa pay him for his "working" while on the road. He called the
purple peterbuilt truck our house. He had toys in the closet and all his drinks and snacks in
the refrigerator. He would climb on the bed when he was tired of being up front or playing
and turn on the T.V. to watch his favorite programs. His Papa would find a place for Kaleb to
get out of the truck and play with his remote control truck or ride his tricycle for about an
hour a day. He's played in just about every state from S.C. to the west coast. He loved being
on the road a lot more than we ever did. He would get so upset when I would tell him he
had to go and see his mother and little brother and then he could come back to work. He
would get so mad at me, he would say "Not see moma, go to work with Nena and Papa." We
would have to leave him crying to make him stay home and rest. He loved that old truck so
much when we would take our time off he would still make his Papa go sit in the truck in the
yard so he could get up in it and play. I do not regret taking Kaleb so much on the road
cause in his short life he has been everywhere and saw most everything. He at three years
old was learning as we went through a state. He has seen the deserts with the tall cactus
standing tall as most men, he has seen the most beautiful mountains, the oceans and all the
famous rivers this country has. He saw the wild life in all the different areas. He saw the sun
set and rise on some of the most beautiful landscapes that most people only see on T.V. So
if Kaleb never wakes up fully again I know he did not spend his life locked inside like most
sick children. He loved life, he saw beauty in the simple things that we as adults sometimes
forget to take time to enjoy.
He would see a Toys-R-Us or a Chuckie-Cheese on the side of the interstate and we would
have to stop for a short while for him to just be a kid! He was such a joy to me and his
Papa. We spent so much time enjoying life with Kaleb in three years. We put him before
making money or anything else that is not important.
I was driving through the mountains in Wyoming, it was about midnight on the east coast, but
the sun was just setting where we were at. I had not been talking to Kaleb for miles. He was
sitting over in the passengers seat, binky in his mouth, blanket in his hand and a sipping cup
propped on the arm rest. He could barely hold his little eyes open. Our routine was for him to
fall asleep then I would pull over on the side of the interstate and put him to bed with his
Papa and get back to driving till sunrise.
We reached the top of a mountain and Kaleb sat up in the seat and replied " heaven! Nena "
It shocked me so bad I at first was speechless. I looked at him now on the edge of the seat
pointing to the most beautiful valley below, the setting sun was sending bright beams of light
over the farmers fields. I composed myself and said " Kaleb, have you ever seen heaven? " his
reply only stunned me more. Pointing again he said while still looking ahead " that's heaven !" I
pulled that truck over so fast that I was sure I had shifted our load. I popped the air brakes
and called for my husband to get up! Kaleb by now was looking at me. When Papa stuck his
head out of the sleeper I told Kaleb to tell his Pa what THAT was. He again said that's
heaven. We sat in silence for a moment. Then I ask him again "have you seen heaven
Kaleb?" and once again only more assertive "That's Heaven!" pointing again to the valley below.
As I put the truck back into the flow of traffic I knew in my heart that this baby had seen
heaven. I never questioned Kaleb about it again. When he drifted off to sleep, his Papa and
me discussed how sure Kaleb had been about heaven. When darkness fell and they were
both in the bed I thanked the Lord for letting Kaleb share that with me.
Then a couple of weeks later he was with his mother. He got up one morning, went and
crawled in her lap and told her "Jesus called me." She asked him how Jesus called him and
he replied "On the phone" she then asked Kaleb "well what did he say?" and Kaleb said " him
wants me to come see him, me told him me will!"
My daughter called me very upset she asked me what that would mean, was Kaleb going to
die? I was very upset to hear what Kaleb had said. I told her I did not think he was going to
die but that it was not going to go like the other surgeries had gone. I told her to start
praying for God to protect Kaleb. And that if it was not Gods will for Kaleb to have this
surgery, that God would show us.
I spent days thinking of the things that Kaleb was saying. I prayed most all night while driving,
I would wake myself up during the day in that truck sleeper, praying out loud. I cried alot
when it was just me, and God going down that interstate in the darkness.
But I never felt any better inside about Kaleb and June 9th was coming too fast.
Psalm 31:24
Be of good courage, and he shall strengthen your heart, all ye that hope in the Lord.
CHAPTER SEVEN
" I Love You , Too ! "
The last few day's before Kaleb's heart surgery he began to tell all of us over and over I
Love You, Too. It was as if he heard us telling him I love you, and would respond. I am so
thank-full now for all the times he said that to me, I would give anything to just hear his little
voice again.
The night before the surgery, we went shopping for some new toy's and book's for Kaleb while
he was recovering. When we were back at the motel, Kaleb did not want to open his new
toy's, he only wanted to play with his bubbles. His Papa and him made bubbles out on the
balcony, that floated down to the pool below. He was very solemn that night. He just wanted
to be held. When we got ready for bed, he snuggled down between me and his Papa. He
said his little bed time prayer... Now I lay me down to sleep, if I should dream before I wake I
pray in heaven to awake... He then sat up between me and his Papa and like he was telling a
secret he proclaimed " Me going to heaven, Nena!" I was so shocked, I with a stern voice told
him "No you are not." his reply "Yes me are!" I again told him he was not. He started to cry,
I told him he could go to heaven when I did. He said "But me want to see Jesus!" I told him
that in the morning when the Doctors were "fixing" his heart he could go play with the Angels
but that he had to tell Jesus that he could not stay! I finally was able to convince him that
would be okay. He soon fell asleep cuddled up beside me. I was up most of the night, praying
for God to protect Kaleb, and that if it was not God's will for Kaleb to have this surgery for
him to show me. Now I realize he was showing me, I just did not want to see it. Kaleb was
and is a very loved child. Me and his Grandfather have spent his little life trying to ensure that
he knew how much we loved him. We know he loves us, he made sure he told us enough
before this happened. He knew it would be a very long time before we heard "Me love you
too!" We both miss him now very much, some days are very hard. But we still love him
enough to never give up on God. He is still our "special boy!"
Matthew 11:28
Come unto me, all ye that labour and are heavy laden, and I will give you rest.
CHAPTER EIGHT
JUNE 9 , 1998
AND THE STORMS AHEAD
We slept late that morning, Kaleb was to be the first surgery of the day.
It was almost seven before I woke up and started the rush to the hospital. Kaleb was still half
asleep as we were dressing him to leave. I decided to not put his new shoes on that he had
gotten the night before. We took him in his sock feet. We had preregistered the day before
so we would go straight up to the floor.
When we got to the hospital, Kaleb told me again, "Me not like Charleston" He only knew
pain there. I told him this was the last time he would ever have to come back. I told him the
Dr.s needed to fix his heart. He told me "Not right now me not ready!" I told him we were
already late and we had to let them get started. The Dr.s were already down in the operating
room when we got there. The nurse had to call down and see if they still were going to take
him first since we were already so late.
The nurse hung up the phone and said he was still going first. They did his check in and
gave him medicine to make him sleepy. He was sitting in my lap. His Papa was sitting beside
us, he was lost in his thoughts, Kaleb looked over at his Pa and said again" Me love you, too
Pa" his Papa did not hear him and he sat up and said it again. I had to get his Papas
attention so he could tell him the third time. Papa said" I love you too baby." Then Kaleb
looked behind himself at his mother sitting in the corner, he said "My moma pretty, Nena" I
said yes she is Kaleb. By now he was getting sleepy, he layed over on my shoulder and had
the sweetest smile come on his face, almost like he was catching his breath in amazement
he said " This Nena, Papa and Kalebs house" now he was having trouble keeping his eyes
open, But he was still looking at the ceiling and smiling. Another minute or so passed then he
was in a deep sleep. I did something that day I had never done before, I went and placed
Kaleb in his mothers lap. She and I had so many disagreements in the last three years. She
at times would get angry because me and Kaleb were so bonded. Like I told her on so many
times, he nor I were to blame. He felt safe with me. He was the center of my life. She had
on many occasions hurt me deeply by taking Kaleb away from me. He would be upset and
crying. It was a bad situation.
I placed him in her lap and told her that I was not placing him on the operating table this
time. I in all the other surgeries had done that. I told her it was her place, she was his
mother. I really tried to let her take the lead with Kaleb.
They came and we followed them down the way to the operating room. Me and his Papa
kissed him and stood outside the door while she laid him on the table. Then the three of us
with tear filled eyes walked away. It was about eight-thirty by then We were told they would
update us and that Kaleb should be out in about five to six hours. I suddenly became so
tired, I told my daughter that since her father and stepmother was there that I was going back
to the motel to lay down and for her to call me when she got an update. Again, something I
had never done before. I had always paced the floors when Kaleb was in any type of
procedure. It is hard to explain how I felt that day. I knew in my heart that things were not
going to be good. Me and Keith barely spoke all day. Back at the motel I tried to rest, but
my mind was so restless. At around noon, I had Keith to call Angel, she should have heard
something by then. She had not heard anything. Then I did become worried, what was going
on that the nurse had not even phoned up to say "Everything is going good" that's the way
it had always went. But this was not like then, I knew.
By two I had to return to the hospital, I could not stay away any longer. I watched the
clock. NOT knowing was so hard. Now I was praying almost continuously to myself. My heart
was pounding in my throat. Finally the Dr. came to the waiting area and called us to the hall.
We all gathered around him waiting to hear it went fine. He leaned back on the wall and then
said we ran into some problems when we got inside the heart, all we can do is hope he
lives! My ears began ringing those words, I do not even know what he said after that. I stood
there eyes on him but I could not hear anything. When he finished I remember saying Thank-
you, and turned and walked around a corner and began crying. Keith and I standing there
holding on so tight. We had loved and cherished this child, I kept saying God just can't take
him now. I don't know how long we stood there before I thought about my daughter. I went to
the restroom where I had seen her go. Her stepmother was telling her that she needed to ask
God to forgive her so she could ask God to spare Kalebs life. Well, I looked at my daughter
in the eyes and told her that we needed to go before the Lord for Kalebs life. I told Angel
that we all had to stand together, everyone that Kaleb loved had to love him enough to
believe as one. Then I told her we needed to go see him. I could not believe it. I had held a
happy little boy that morning, who from appearance looked so healthy.
We went back to the waiting area and let them call back to the I.C.U. and let them know we
wanted to see him. They said they were still working with him and that they would come get
us when they were done.
After about ten minutes Dr. Lisa Routen came out. She had been Kaleb's Dr. since he was a
newborn. She said that only one of us could go back, so Angel was going. After they started
down the hall the Dr. came running back and called for me. Angel was leaning against the
wall outside the unit. She was crying, the Dr. had told her how bad Kaleb looked trying to
prepare her, Angel had told her she needed me to go back with her.
Kaleb looked worse than I had ever seen him before. We were not back there but a couple of
minutes when Kaleb went into cardiac arrest. They told us to leave as they were trying to
revive him. We was returning to tell the others what had happened. My husband was in the
hall, when I told him he ran through the doors to the I.C.U., I turned to my daughter and we
started praying as I held her. In a few minutes the doors opened and Kaleb was being
wheeled back to surgery. He was out about forty-five minutes. My husband came out with tear
filled eyes and told me he had to see him and tell him he loved him. I just said I know.
Back at the waiting area, we were greeted by what turned out to be the first chaplain to pray
with us. We were removed from the main waiting room and placed in a small private room.
We all held hands and prayed for God to spare this child's life. After we prayed I realized my
first husband had been holding my present husbands hand during the prayer . When we were
alone again I mentioned this to him and he said with a grin I"ll do anything it takes for my
baby boy. I guess any of us would have.
It was time to go and call our families and let them know what was happening. My mother told
me she was on her way to Charleston as soon as we hung up the phone. I had to make
sure my sons knew. Before Kaleb came out of surgery everyone started coming in.
The Dr. came from this procedure like the first, he said all we can do is “Hope” he lives.
Again another chaplain came and prayed with us. Then we were told that Kalebs lung
preasure had gotten to a dangerously high level, we could let them try an experimental carbon
monoxide treatment to lower it or he would die in a few hours of lung failure. We went for
treatment. They said he still would not make it through the night. That was the first of many
nights I walked the halls outside the I.C.U. Everyone started taking turns going to sleep, but I
felt that I had to stay near Kaleb to give him the strength to hold on. I rebuked satan not
only from Kaleb but from everyone in that hospital who was being attack. I was fighting a
spiritual battle for Kaleb.
After Kaleb had stabilized we were allowed to go back and see him. He had swelled so much
after the second surgery. He looked like my oldest son at his age. I told my husband I just
could not bear to look at him. I did not go back in to see him for several hours. My husband
would go back every hour on the hour for about five minutes to check on him. That first night
we had the chaplain sent to us three times. Then a Dr. would follow with more bad news. But
I just had to believe that God was going to spare Kalebs life.
Time stood still, lifes problems no longer mattered, all my energy was believing that by faith
Kaleb would make it. I had put so much faith in the Dr., more than ever before and look
where we were at now. I knew who was to be our saviour.
Kaleb had four chest tubes instead of the two that is normally used after heart surgery. ( these
are to drain the excess fluid from around the heart)
The Dr.s said they had never seen a patient drain so much fluid not even an adult. On June
12, Kaleb was taken back to the operating room for another heart cath. to see why he had so
much fluid. They still had no answers, they could not understand were all the fluid was coming
from. Later that night his urine turned black. The Dr. told us that Kaleb had liver failure. His
only advice to us again was all we can do is hope he lives. I went back to see him and I
prayed for God to heal that liver. And the Lord gave me a peace.
By the next morning they had packed Kaleb in ice, his fever was 105 and it would not break.
Then I started praying for the fever. From the 13th thru the 19th, Kaleb would start doing a
little better then he would become even worse. On June the 20th the chaplain arrived before
the Dr. again. The Dr. came and told us that Kalebs lungs had hardened, when we asked
what could be done he informed us they could do nothing, he did not qualify for a transplant
because his heart was so weak. Again we were told he would die shortly from lung failure. I
had to hold onto Gods hand and believe. He was my only option.
Later that afternoon my youngest son and my daughter saw what appeared to be a very bad
bruise on Kalebs stomach. They asked the nurse about it and she said that sometimes after a
heart cath. the patient will bruise. And not to be alarmed. Kaleb still was draining massive
amounts of fluid from around his heart, his lungs were getting worse, his liver was to be
tested because it was failing.
The Dr. had told us on the night of June 9, that if Kaleb made it and stabilized, if he saw
this procedure was not working for Kaleb he would take it down. Now because of all that went
wrong he was having to try and justify taking it down, but in the same breath said Kaleb
would not live with this procedure.
I really had to pray for God to help me hold on. It was like taking your car to the shop for
an oil change and the oil leaking out and them saying "well, I don't know if we can justify
refilling the oil." and you know the motor will lock down without the oil. Well, I had taken a
little boy in who seemed so full of life and everything that could go wrong had, and then
having a Dr. tell you he could not justify saving his life. I was angry at them, angry at myself
for not stopping the surgery and feeling like everyone had let Kaleb down. We were suppose
to take care and protect him, the medical professionals were suppose to make him better not
give up on him! I had to get off by myself and ask the Lord to take all the anger from me. I
knew that satin would destroy me if I held on to all of that. I gave it all to God. Kaleb loved
life and people to much for me to become a bitter person. The Lord spoke to me with that
soft, tender voice and said for me to tell that Dr. about Kaleb! Tell him about the things he
had said in recent months about heaven and seeing Jesus. My back was against the wall, I
knew God was the only one who could turn this all around. I started praying for him to touch
the hearts and minds of the Dr.s and let them see that he was in control of Kaleb.
By Monday June 22, I knew Kaleb was getting weak. I demanded to see the surgeon. I was
told he was in the operating room all day. I told them to tell him we would expect to see him
when he came out. We waited all day, about seven that night he came to talk with us.
Again he had us in the hall and then told us that he did not think Kaleb would live through
the surgery. I felt like he had given up on Kaleb! So I let him finish talking and then with a
very calm voice I said " Well Dr. Bradley, I don't want you to ever forget Kaleb Ivey. He was
a very loved child, he loved life, he was happy, he has been all over the United States in a
Peterbuilt, he was a little truck driver, he was a very good big brother, he would cry to watch
Benny Hinn on T.V., he called it Jesus. He told me the night before this surgery that he
wanted to go to heaven and see “Jesus." That's when he looked up from the floor where he
had been staring and said "when did he tell you that?" I repeated the night before his
surgery, I went on to tell him about Kaleb telling me that's Heaven. Then I told him I hoped
he understands that he was not in control of Kaleb we were all there because God had
allowed it to happen. I told him that even without this surgery if its Gods will Kaleb will not die.
By this time he looked up and wiped a tear from his eye, and told us he was sorry. We all
walked away, I told my daughter that now no matter what happens he would remember that
little blonde haired boy. We went back to the Ronald McDonald house and was waiting for
shifts to change at the hospital so we could go back and see about Kaleb. I was sitting on
the upstairs porch when the Lord brought to mind Abraham. He loved his son, he trusted in
God enough to take his son to be sacrificed. Suddenly I knew how he must have felt. That
was no longer a story in the Bible it was real now. I prayed and then the Lord told me it
would look bad but to hold on to him.
I told everyone what the Lord had just given me and told them that something else was going
to happen, and not to become afraid. We had to trust the Lord. Then me and my husband
went back to the hospital. We were a little early so we had to wait a few minutes before we
could go back. As we entered the area where Kaleb was the nurse said the Dr. had been
looking for us. She asked me to get my daughter and she would page the Dr. I sent my
husband to get Angel and I went to Kalebs bed. All of a sudden it sounded as if he was
passing gas but blood was oozing from everywhere. The needles in his arms was backing out
with blood. It was within a minute or so dripping in the floor. I looked at the nurse across the
bed and from her face I knew this was bad. She called the Dr. who told her nothing could be
done. She told me he would not make it but a couple of hours, but the Dr. had said if he
does live until morning he would take the surgery down.
Then I heard over the speaker my daughter asking to come back, I said please lets cover him
up she can't see him like this. She told them to wait a moment and she placed a towel
across Kaleb and wiped off his face. She then wiped the blood off the floor and went over
the speaker and told them they could come back. Another nurse was in a corner on the
phone with the Dr., as soon as Angel came in they sat her down in the corner and handed
her the phone. My husband had came by my side and I was telling him what had just
happened then I saw the chaplain enter the room. I knew the bad news was coming next.
Angel hung up the phone and said Dr. Bradley said if Kaleb made it thru the night he would
put Kalebs heart back like it was when he entered the hospital on June 9th. She then looked
at the chaplain , then at me with a confused look. I pulled back the towel and she saw the
blood. She started to cry and I told her Kaleb deserved for us to remain strong for him. The
chaplain said a prayer and left us by the bed. I had a hold of Kalebs hand. I put my face
close to his and I told him how very special he was. I told him that "everybody loves Kaleb"
and ask him if he knew how much he was loved, for the first time in weeks he shook his little
head yes, he was trying so hard to open his eyes but he just could not. Then the nurse
asked us to please step out so they could clean Kaleb up.
We all went outside with such a heavy burden. The child we loved, had stood over praying for
a miracle was going to leave us. I told everyone that if God was going to take Kaleb we had
to show him as much love as we could until the last second of his life. We would not cry
over him, we would sing, and tell him over and over how blessed we had been to have him in
our lives. We would give him back to the Lord with Thanksgivings. We would have plenty of
time for tears later. We did discuss giving any of his organs to the donor program to help
another child, that's what Kaleb would have wanted we all agreed. We discussed his funeral,
that it would not be a day of mourning but a day of rejoicing for Kaleb.
We stood over him all night, we sang Amazing Grace, told him if he wanted to go to heaven
and be with Jesus that was alright and that we would meet him in the morning. We stroked his
little head and kissed him and prayed over him that Gods will be done. Up until now I was
praying God just let me keep him, I do not care if I have to push, pull or carry him. Now I
realized how selfish I had been. Kaleb had a personal relationship with the Lord. We had
borrowed him for a little while. And I was then ready to accept Gods will. Keith on the other
hand, broke down this time. We went out at 4:00 am so the nurse could work on Kaleb. She
had told us it would be about an hour before we could come back in. I never will forget the
pain in the cry of the man I love. He had been so quite that night. Now he was on my
shoulder sobbing like his heart was broken for the last time. He was trembling so he was
shaking my whole body, and he kept repeating “ I can't help him this time.” Kaleb when ever he
had been afraid or hurt would run and grab onto his Papa's legs and say "help Kaleb Pa!"
And the sad thing was we all felt that helpless. When we had all had a good cry, we had the
strength to go back in. My mother came over to me and said " Pam, Gods not going to take
Kaleb." I wanted to believe her but in my heart I felt like those were the final hours.
We went back into the I.C.U and as we turned the corner to where Kaleb was I could not
believe my eyes, Kaleb was pink! Only an hour ago he was bluish gray, now he was almost a
rose color. I looked at everyone and said "he is going to be alright!" At last we had found a
ray of hope again. God's always just in time, when you think you can not take anymore. And
that night had been the bottom for us all.
The day was no shorter, we waited all morning for Kaleb to go to surgery. The Doctor came
and talked to us at 12:45pm. The swelling and bruising that Kaleb had was a adverse reation
to the blood thinner Heparin. We were told that the only lab in the United States that tested
for this was in Wisconsin. This would take about a week to confirm. We were told he had
massive clotting in the stomach cavity. It was so bad that the blood flow had been restricted to
his left leg. That was why it had swollen so bad and turned black. We then were told that they
would air lift his blood to the lab and try and get a rush put on the test. Then he started
talking about the surgery. He explained that Kaleb was in very critical condition and he may die
on the table, we all decided that we had to at least give him this chance. With this heart
procedure he had no chance, if he survived the surgery he would have a chance. They then
took Kaleb to the operating room. By then the family was all back in the waiting area. We
prayed all day for the Lord to be with Kaleb thru this surgery. The Lord laid it on my heart to
start praying for the other little children there. So I went and prayed with a couple of mothers
for their children. God had given me a peace about Kaleb, I knew in my heart that he was
going to come out of the O.R.
It was a very long day, then at 9:00pm they called us on the waiting room phone to say that
we were to go to the I.C.U. hallway and the Dr. would be out to talk with us after he had
Kaleb back on the floor. We all gathered, this time I counted the crowd, fifteen people who
loved this child was there. From his baby brother to his great uncle. I was thankful for the
support that was being given to Kaleb.
Then I saw him, a chaplain coming down the hall. I turned to my husband and told him I could
not take much more. My heart was sinking again. Ever time we saw the chaplain before
receiving the bad news. What was it going to be now!
By the time the swinging doors opened and the Dr. came out I was ready for the worst. He
started by saying that he had taken down the heart surgery that he had done on the 9th.
Kaleb was very weak, but he had made it thru the surgery. Then he said he had gotten as
much of the clots as he could from his stomach cavity. But he still had alot of clots that he
could not get. He then said that when he got into Kalebs heart he had a clot in the artery
heading into the heart. He had been able to get that one. Then he said that Kaleb had major
problems in all areas. When I asked him what he meant, he said well " his heart, kidneys, liver,
bowels, just his whole body!"
I had been praying so hard, I knew God had touched Kaleb, I would not except that the Lord
had not touched him. I then asked him well what about his lung's, he had not mentioned his
lungs. He said "Amazingly they are better!" My response was yes you said it “ Amazingly”. And
I said thank you Lord!
Then all of the family went back to the waiting area, most everyone was leaving to go home,
so I asked them to all gather around in a circle before they left so we could thank the Lord
for keeping Kaleb safe during the surgery. We all held hands and gave thanks to the Lord.
Me and Keith made our bed for the night on a sofa in the waiting room and laid down for
what little rest we could get. I talked to the Lord most of that night. We would take turns
going to see Kaleb every hour. I felt that by day light the worst would be behind us. For
some reason, the nights were always the toughest. By morning Kaleb had regained some
strength, he was still critical, but he looked better.
From June the 24th Kaleb seemed to be getting stronger. On June the 26th, Keith had to go
back home to go to work. (We had not worked since June the 5th) I decided to go home for
the week-end and come back on Monday morning. We both needed to unwind a little. Kaleb
was getting stronger and I felt like everything would be fine until I came back.
On June the 27th the phone call came from my daughter. Kaleb had suffered a stroke. The
neurologists had said more than likely during the last heart surgery. It affected his right side. I
was so upset, I was crying and asking God how much more was he going to allow satin to do
to this child! I felt as if I was in a very bad nightmare. I a person who for years had been in
control of my life, who did not depend on anyone, was suddenly unable to make things better.
I finally accepted the stroke and told my husband that we would just work with Kaleb until we
got him back! I told him it may take us a long time but we would not stop until Kaleb was
back.
The next morning I went back to Charleston to be with Kaleb. By now they were letting him
wake up. He was not being as heavily sedated. When I went to his bed his little eyes looked
into mine, he looked so afraid. He began to cry, all I could do was put my face to his and
hum to him, he went back to sleep and I left the room to be alone for a moment. I cried out
to the Lord and begged him to please take the fear from this child. I could not take him
crying like his little heart was broken. Then I thanked him for keeping Kaleb safe. I knew that
when the Lord said “that's enough” that satin would not be able to attack Kaleb again. I prayed
for a swift end to this battle.
For the next few days Kaleb was very confused, when his eyes would open he would cry. It
would take a long time to sing him back to sleep. Then on July the 3rd Kaleb opened his
eyes and smiled, his great-uncle Phil had came to visit. Phil had started going to church and
had gotten saved. He became a great prayer warrior. He had stood with me in believing that
Kaleb would go home from the hospital.
July the 12th was the best day Kaleb had had since we checked him in the hospital in June.
We could hold his attention for about thirty minutes before he would start to cry. We would
then sing him to sleep and wait on him to wake up again. When he would wake up he knew
us and we would read to him and sing and play peek a boo with him until he would become
confused again. That night during shift change we waited. When the time came that we could
be with Kaleb, they told us it would be about fifteen minutes. Then when they allowed us to go
back, Kaleb was being put back to bed. I was shocked, we had been told we could not hold
this child because of the danger of a clot dislodging. I asked the lady where he had been and
she said she had taken Kaleb down to the play room and exercised the upper half of his
body. I asked her who had approved that, she just said he had been approved for therapy. I
assumed that it must have been an indication that Kaleb was improving faster than we had
expected.
We spent time again playing with him and again waited until he was ready to go back to
sleep. When he began to cry we hushed him off to sleep and left the hospital about midnight.
When we were back at the Ronald McDonald house me and my husband had spent the next
hour or so talking about the progress that we could see in Kaleb. At around two in the
morning we called and checked on Kaleb and then turned in for the night. I could not go to
sleep I had the need to pray for Kaleb, for some reason I started praying for protection. Then
at 3:15am the phone began to ring... I awoke Keith and he answered, he gave the phone to
Angel. I knew already in my heart that something once again was very wrong, I had my shoes
on by the time she hung up the phone. Then she said something bad had happened to
Kaleb, that they were working on him and that we would be told shortly. I do not remember
anything about our dash to the hospital, I came back to my self when we were getting on the
elevator. It felt like an eternity before those doors opened on the floor where Kaleb was at. As
we headed from the elevators the nurse met us in the hallway. She was shaking and crying
and saying I am so sorry over and over. I finally got her to start telling us what happened. Her
name was Randie, she had been one of Kalebs nurses when he was five days old, she had
grown to love Kaleb over the years. She told us she was going to take us to a room to await
word from the Dr.s. When she got us to the room she said that another nurse was working
with Kaleb that night. That she was working in the adult I.C.U. that night. And that she had
seen them wheeling Kaleb thru, on the way to the cat scan. That's when she called us. They
had told her that Kaleb had suddenly sat up in bed, having a whole body spasm. That then
the nurse realized that something had gone wrong. Then I looked up and saw the Chaplain
coming in the room, I looked at my daughter and said "Well, praise the Lord, this means that
nothing else is going to happen to Kaleb!" By now all three of them was looking at me like I
was crazy, here we were awaiting word on whether Kaleb was even alive and I was praising
the Lord. Then I explained that this was the seventh time the Chaplain had been sent to us,
and that is God's number! In my heart I knew that we were going to win the battle. Then
about six O'clock the doctor came to tell us that Kaleb had a massive stroke. He had what
they described as a star burst of blood clots hitting the brain on both sides. He explained that
from the looks of the first test, it had done major damage. And that the next 72 hours if he
made it would tell. He explained that had we as adults been walking around and had the same
stroke we would have been dead before we hit the floor. He said they would do tests on
Kaleb through out the day but it may be a couple of days before they could tell us exactly
how he had been affected. We again began the wait. I prayed over and over for God to touch
that little brain, to repair the damage. By 9:00 am that morning the old flesh had came in, I
told my husband and daughter that I was going to the hospital administrator, I had alot of
questions that I needed to be answered. I was not going to wait until Kaleb was gone and
wonder for the rest of my life! Once in the office, I told them that I demanded a meeting
ASAP with nurse managers, doctors and anyone else who had over seen Kalebs care. I was
told that it would be afternoon before such a meeting could be arranged. I told them I would
be there, I had no where else to go, Kaleb now responded to nothing. He was like a dead
child laying there. I felt as if my world had ended that morning, I was angry with everyone, I
was mad at myself for letting Kaleb come here, God had tried to warn me. Now I had truly
lost my Kaleb! Why had God let this happen, I had been faithful, or had I? I had been telling
God since June the 9th that I would take Kaleb anyway I could get him. I had prayed over
and over that if God would let him live that I would except him in any condition. What had I
done? I had asked the Lord to try me! I had opened the door to all of this. Like satan had
done when Job was so faithful he had gotten permission from the Lord to test what I was
praying. Suddenly I remembered that I had told the Lord that no matter what happened with
Kaleb I was going to serve him. And I could just hear satin in his pettion to the Lord, "See if
she will serve you now!" I had to once again get off by myself and ask the Lord to forgive
me for being angry, I thanked him for all the blessings he had given to me, I prayed for Kaleb
and then said Father your will be done, I don't care what the out come of this situation I am
going to serve you! I asked him to take the pain, anger and to give me peace. I asked him
to use me to draw people to him. I felt better in an instant. I had my assurance back. I knew
who was in control, not me, not satin but an awesome God, the creator of everything. The
man who held it all in the palm of his hand. I knew he was with me. I knew that I could face
whatever would come. Later that afternoon I had my meeting with the staff, everyone except
Kalebs heart surgeon. The following is a list of question I asked that day. If I had not prayed
and received that peace, there's no telling how that meeting would have ended. Because I
demanded that as soon as Kaleb was stabilized I wanted him out of Charleston. I had lost
trust. Everything that could have went wrong had.
1. For what reason was the heart procedure changed when Kaleb had the surgery on June
9th? (A different procedure had been performed that day than the one we were told)
2. Why was the take down procedure delayed for two weeks?
3. Why did they wait two days after the bruising and swelling was found that Kaleb was
checked for blood clots?
4. If it is known that a heparin reation can continue to clot the blood why has Kaleb been
taken off the other blood thinner? (Orgaran - before having a INR >2.0, Kaleb’s was 1.76 the
day it was discontinued) 5. What extent of brain damage is
there believed to be?
6. What in the medical opinion should we be concerned with at this point?
7. Who approved Kaleb being taken down to work the upper part of his body the night before?
If we could not even hold him why was that acceptable? (We had been told it would be to
risky to take him down for a MRI, they wanted to be sure the clots were not going to dislodge)
All of my question were unanswered because they had to be answered by Kalebs primary
(admitting) Dr. Who was his surgeon. The only one not there. So before ending our meeting I
left word that I would be at the hospital again when he came out of surgery. And that I
demanded answers that day! Later that night when he came up from surgery I was waiting
outside the I.C.U. for him. I pulled the list of questions from my pocket and started asking. I
was satisfied with all his answers. When I got to the one about Kaleb being taken and
exercised, he stopped me, he said that he should have never been taken out of bed and that
he would find out who had ok'ed it. We never found out who or why he was taken from bed
but at this point what purpose would it have served anyway. I never asked him about it again.
I knew that my attention was to stay in prayer for Kaleb, not getting angry over something that
was already done.
July the 14th was when word started coming in on the first test. Kaleb had a massive stroke
and that it was unclear how much damage had occurred. They kept saying extremely
damaged. They did another M.R.I. that day and made an appointment at 2:00 the 15th to let
us know the results. It broke my heart to look at Kaleb, I still kissed his little nose, but inside
my heart was broken. He would not move when they came by in the morning to test him for
response. They had to put him on a special mattress to keep him warm, he could not even
control his temperature. His little head swelled to twice its size, they had to cover his eyes
because they swelled so big his eyes would not shut. He had a large knot at the base of the
neck, they said it appeared to be from the brain stem starting to detach its self from the brain.
(Thank God they were wrong) The whole situation looked grim, but I did not look at the bad, I
kept looking at Kaleb, I knew I could not give up on God or Kaleb. God had kept him, I knew
he still was. July the 15th was my daughters birthday, we all waited on the meeting about
Kaleb. I prayed so hard for everything to be alright and if not to please give me the strength
to stand. We were visiting with Kaleb when the nurse came and told us the doctors were
ready to talk with us.
CHAPTER NINE
BRAIN DEAD ... MAN GAVE US “ NO “ HOPE
They took us to a break room in the back of the I.C.U., when the doctors arrived you could
tell by the faces this would not be good news. They began by saying the whole brain had
been destroyed, the only reason they could not sign the death certificate was because the
heart was still beating on its on. But that as the swelling continued to go down that the brain
stem would finish detaching itself from the brain and that when this occurred that his heart
would stop. His heart doctor spoke up at this point and said that the heart had been
weakened by the stroke so it may stop before this happened. Then the words came that made
me cold to the bone, they explained that he was going to die anyway so we needed to make
a decision on how to go ahead and let him die. They said we had a couple of options, we
could take him off of the breathing machine and he would die, or we could no code him and
they would keep him comfortable but not render any medical treatment, or we could stop his
feeds and he would starve to death. I was in shock, I was looking at their faces, they were
talking about "killing" a child and showing no remorse. My daughter decided to no code him
until Saturday, and then they could cut the machine off! So the 18th day of July it was
suppose to end. I left that meeting numb, I walked my daughter back to the room everyone we
passed going back could tell that something was very wrong. I got Angel back into bed, she
was crying and I went to the upstairs porch to speak with my heavenly Father, I was so cold
in the summer heat. Once alone I broke down and was begging God to help me. To please
take this pain from me, to please turn things around for Kaleb. I was about calmed down when
the mail arrived that day. The girl that worked at the house brought me an envelope filled with
cards from family members for Kaleb. God had waited to let them be delivered because he
knew I would need them at that moment. As soon as I opened the cards I made up my mind
to pull myself together and go visit with Kaleb and read him his cards and hang them on his
wall. It was not over until the Lord said it was over and satin was not winning. I went back
with an assurance again to see Kaleb! God was my strength and refuge in time of need, not
medical personal. I went back to Kaleb and the nurses looked at me with such pity on their
faces, I became even more determined to be strong. I had witnessed to about every nurse
and doctor in this place, if I lose it now they won't see God in me. They would assume that it
was all real but where is "her God" now.
I went into Kalebs room and began talking to him as if he were alright. I read him all his new
cards and told him how he was a very special little boy that so many people loved. Then I
began to hang his cards on the wall with the rest. Then a nurse came in the room to tell me
how very sorry she was. She had tears in her eyes and I told her not to cry that God still
had control of Kaleb and that I was sure his will would be done. I told how grateful I was to
have been blessed by God with Kaleb. And she said you are so strong, I came in here to
comfort you and your comforting me! I told her I was human, I am not strong, only by the
grace of God do I appear to be in control. I admitted to her that I was afraid of losing Kaleb
but to serve the Lord I have to trust in him, even in the mist of this tragedy. She left the
room shaking her head. I began to rub Kaleb down in lotion, he had alot of muscle spasms
(posturing) from the brain damage. I stayed with Kaleb for hours singing and praying for him.
He still was showing no response. I went back over and told Angel she needed to get up and
go see Kaleb, she told me she was not going back to the hospital that day. I then had to
inform everyone what the doctor had said. I told them that Angel was going to let them cut off
the machines on that Saturday. I could hear myself saying the words but I just did not feel it. I
began praying for him to let Kaleb show his mother in some way that this was not suppose to
happen. For God to give her a sign. I knew I did not have the energy to fight her on this.
Most of the family had already given up on Kaleb. So I knew I did not have much support in
my desires to let him live.
Then I over heard my daughter telling people if they wanted to see Kaleb they had better
come down because Saturday the doctor was taking him off the machine. My heart was being
torn from my body, the child that Keith and I had wrapped our world around. He was the joy
of our lives. Now it was like the count down to his death. I had to spend as much time with
him as possible. I had to talk with him about heaven and Jesus. I did not want him to be
afraid if he were to be taken. Then I started to remember that people who have near death
experience talk of a loved one coming to get them. Who would come for Kaleb, no one that
he knew had ever passed away! The Lord gave me a peace about that also. I now believe
that a very beautiful Angel would have helped Kaleb to the other side. I have felt the presence
of Angels around him since he was a baby. I know in my heart that Jesus would have held
him in his arms.
Since Kaleb was a no code now I felt I needed to be by his side. I did not just want a
phone call if he was leaving. I was hoping and praying for a miracle. And I was not going to
give up until the Lord took him. I was weak from fasting, lack of sleep and the preasure that I
had been under for weeks. I felt as if the world had pushed me to the side and left me in
the twilight zone. Now I understand that the Lord put me in a place to prepare me for the
battle that would be ahead. He was training me, to stand, to believe in him in all situations. I
was worn, but he was making me strong.
One of the mothers of another heart baby had became close to us during our ordeal, her
name was Sonja. Her son was named Caleb, he was in very critical condition also. We prayed
together, prayed for each others babies and helped each other make it through the bad days.
She had her church praying also for our Kaleb. I think about her family alot now. She was
such a tender hearted person. She was in the battle of her life also and yet she stood with
us and watched over our child also. If for some reason they would not let us back to see
Kaleb, Sonja would come out from visiting her son and tell us what she had observed about
Kaleb. I asked about her son on a recent visit to the doctor and was told that her Caleb is
doing so well. They said he was a beautiful blonde haired little boy. I thanked God for that
praise report on Caleb Kennedy. Both of these little boys had family praying for a miracle. And
the Lord has cared for both of them. These little boys were medically given no hope, and
they both went home.
That Thursday was a very hard day. I still visited with Kaleb and went on with my prayers for
a miracle. I was still waiting and believing in God for a sign to be given to my daughter to
not allow the machines to be cut off. I lost all track of time that day. I had been given the
opinion of many nurses that day about letting Kaleb go. I was told if I loved him I would want
him to go to heaven. I responded that I did want Kaleb to go to heaven but only if God was
the one who took him! Then I was informed that Kaleb could not die on the machines. I stood
my ground there also, I told them that I had seen God take alot of children right there in that
I.C.U. in the last three years. And that when God gets ready for Kaleb he would take him no
matter what machine they put him on.
I was so tired of defending my Father. I knew that somewhere in their hearts they had to know
who was really in charge. One nurse came in and made the comment that "he is going to die
anyway!" and my anger came out. I told her that they would not use the word dead or die in
Kalebs room, that he would not hear that spoken over him. I would not allow that to be
spoken into existence. She informed me that she did not candy coat a medical situation. And
that I should understand how serious Kalebs brain damage was. I told her that I did understand
what they were saying, but I knew the man who made that brain and he was able to turn this
around. She shook her head and started for the door. As she was leaving I asked her to
please respect my beliefs in the future and not use those words in that room. She never
responded, she just left the room. By now everyone was looking at me with concern. I now
know that they were concerned about my mental stability. But I was stable in the Lord. During
shift change that evening I went and talked to my daughter. I told her how I had been praying
for God to give her a sign. And I then told her that I knew in my heart that she was going
to receive it.
After shift change, I went back to Kaleb's side. I read him a story and then talked to him
about fun things we had done together. I told him again how much joy he had brought into my
life. I told him I was a better person because of him and his love for life. I sat by his bed just
looking at him. I asked myself over and over if I was wrong to be holding on so tight to this
little boy, was I being selfish to want him to stay ? But I knew in my heart that it was not time,
I prayed for God to show me if I was suppose to let Kaleb go.
Around 1:00 am the Dr. came into the room, I was rubbing Kaleb with lotion and singing to
him. The Dr. did not speak a word at first, I told Kaleb that Dr. Bradley was there to see him.
When I looked up the Dr. looked from Kaleb to me and with tear filled eyes said " I'm so sorry"
I was shocked to see him so upset. He in the last few weeks had shown little emotion. Then
suddenly a peace came over me, the Lord told me to tell him I did not blame him. But at first
I was hesitant. I DID blame him... or was I just hurting inside? I felt the tears well up in my
eyes. I silently asked God to forgive me. I looked back at the Dr. who by now had started
looking toward the t.v., I took a deep breath and then began saying what the Lord had told
me to say. I told him that I could not blame him, that if I started blaming people I would
become a very bitter person and that I would not be able to take care of Kaleb. I told him that
I believe that before we are placed on this earth that God knows all things that we will go
through. And I know that this only happened to Kaleb because God had allowed it to. And
that I had seen to many children having the same procedure that had been fine. And that if he
blamed himself he would not be able to help other families because this would destroy him. I
told him that when I left Charleston that I would need all my strength to care for this child that
we cherished. And that we either live our lives with hope or in desperation, and I refuse to live
it as a desperate person. I would care for Kaleb and wait on the Lord to have his will. I also
told him of how Kaleb loved life and people, and if I become angry and bitter that would not
be right if I truly love Kaleb. I have to do it for him. I owe Kaleb that. I told him that as soon
as Kaleb was able I wanted to take him home, if he is going to die I want him at home so we
can hold him, I had not held this child since June the 9th I explained. I want him with his
family and to know how loved he is. I want to crawl in the bed with him and hold him and
smell his fragrance, I want to make him feel secure again if only for a little while. I want God
to heal him I cried, I want him to wrap his little arms around my neck and say "My love you,
Nena."
By now the Dr. and I both were in tears. I told him that God was still in charge and that we
would have to see what his business was. I smiled at him then and asked him don't you have
children and he answered yes and I told him to go home then and hug them real tight, thank
God for what you have and spend more time with them cause the sad fact is if I could go
back and give back twice the amount of money back to have spent just one more week with
Kaleb instead of working I would do it in a second. I told him he was a great Dr. but that he
needed to remember that God was still in control of life and death. He rubbed Kaleb's arm
and told me he would check on us later. I went back to talking to Kaleb. I knew in my heart
that Kaleb would have approved of what I had said to the Dr. But more important God did also.
About then was when I remembered what day it was. It was my birthday. At first I thought well
is this not going to be a great day ? Then I pushed away the thought of the bad and told
Kaleb that it was my birthday and that we would have to do something really special in the
morning . I then kissed him and went to rest for a few hours.
When I was back at the room I prayed for God to give me the answer, to let me know that I
was doing the right thing. When I finished praying I just opened the bible and started reading...
Luke chap. 8 v. 5 But that on the good ground are they, which in an honest and good heart,
having heard the word, keep it, and bring forth fruit with patience. Now my heart leaped in my
chest. I knew, I knew that I was standing where God wanted me to be. I thanked him and
knew in my heart that Kaleb was going to show a sign of improvement. As I was laying in the
dark there praising God, all of a sudden it was like I had drifted off to sleep, but I was still
awake. I could still hear Ray Boltz singing the Anchor holds {I listened to that all the time when
things looked the worst} I can not describe the way I felt, but I was up above thousands of
people and then I looked down and saw Kaleb in front of the crowd. I knew at that moment
that Kaleb was going to be a strong testimony of what the Lord had done during this time of
hopelessness. I now knew in my heart that I was not being selfish, nor was I fixing to have a
nervous break down. The devil was using this situation to make me doubt what my Lord could
or would do. I began to worship the Lord even more, I thanked him for showing me the "rest
of this story." I had a restfilled night for the first night in a long time.
When I got up that morning I did not feel the urge to rush to the hospital, I had a peace
about things then. I knew that God had shown me that no matter what it looked like he was
taking care of Kaleb. I started playing my praise music and fellowshiping with my King. I have
thanked him everyday since then for this valley . I am honored that he loves me so much to
place me here to learn to stand on my feet and stand firm. I did not go to the hospital that
day until afternoon.
That day was my birthday, I went to the hospital and told Kaleb what a great day it was I told
him that Jesus was going to make him better, something I still tell him everyday. I kept saying
that no matter what the devil throws at us Gods already won the battle. We are going home
Kaleb, together I whispered. My daughter came to see Kaleb later that day, she was sitting on
one side of the bed and I was on the other side rubbing Kaleb's little arms and legs. I started
telling her again how God is going to show you he is still in charge. Then I leaned over and
told Kaleb that he had to show his moma that he was going to be alright. I just kept rubbing
him and praying silently to the Lord. The devil kept bringing before me the fact that tomorrow
she's going to let them cut off the machines. And I just kept rebuking him from this situation
and from our lives. Angel had layed her head on the bed by Kaleb's arm, still holding his
hand. Suddenly she looked up at me with tears in her eyes and said "Moma, he just squeezed
my finger," I said oh he did not! She said yes he did moma. I went to the foot of the bed
and lifted up his foot and told her that they had just ran the probe up his foot and he still
had not responded. As I was speaking I took my nail and went up his little foot but praise
God this time he curled his toes upward. I started crying and took the other foot and received
the same response. I told Angel through tears to go get the nurse, I said I knew God was
going to give you a sign, you can not disconnect the machines now. When she left the room I
realized that I was as shocked as she was. This was also a test on my faith. When the nurse
came into the room and saw what Kaleb was doing she said well that's not a good sign, he
should curl the toes downward not up. That's a sign of extreme brain damage. I said well I
must have brain damage too because I have always curled my toes up when someone tickles
my foot. And I told her this was the sign from God I had asked for. I was like a child just
filled to the brim with happiness. And I am going to tell you, that was the greatest birthday
present I have ever received. I knew Kaleb was still in there! I bet I kissed him a hundred
times before shift change that day. I was telling him "See Kaleb, Nena told you that you would
be alright. I told you that Jesus was taking care of you!" When it came time to leave my walk
was even lighter. I felt like the new day had began. I was so thankful that I could not stop
singing and humming Thank You, Lord.
But later that night, the family started arriving in for the next day. I know it was wrong but I
am human, I kept thinking about the fact that these people only knew Kaleb from birthdays,
Christmas and a few other visits a year. They did not know his favorite color was red, they did
not hear him tell the three pig story with all the excitement in his tender voice. They did not
know that when Papa, Nena and Kaleb went to the waffle house on Sat. mornings that he had
to have butter, waffle syrup and strawberry jelly on his waffles or that he had to have coffee
made just like mine in a real coffee cup to drink. They had not wrapped their world around
this child yet they were ready to let him go. ( Do not get me wrong, I know everyone loved
Kaleb!, it was just at that moment I did not want to hear what they thought was best.) I
became so angry listening to everyone talk about what was best for Kaleb and "us". I finally
had the opportunity late that Friday night to speak with Angel alone, I asked what she was
planning on doing in the morning? I was shocked when she said that everyone was already
here and Kaleb will never be Kaleb again. She said everyone was telling her how much care
he would need if he lived. And he would be a vegetable from now on and that was not fair to
Kaleb. Then with tears streaming down my face I told her that if she went thru with cutting off
the machine the next day that I would not be there to watch. I told her that it would take me
a very long time to forgive her if I ever could. She knew how that child loved me and his
Papa and she knew how we loved by him. Then she said that she had another child to raise
too. And she loved Kaleb but she did not think that she could take care of him. Then I told
her that me and his Papa would take care of him, she could come and see him anytime, and
that I would never put any demands on her. I loved her she was my child but I could not
approve of what she was going to do.
I prayed for God to please deal with her and show her the right thing to do.
Day light came too soon the next morning. I had cried and prayed until I felt numb. I was so
very tired. But I knew that I had to remain faithful. My husband came in early that morning, he
had worked all night then driven the three and a half hours to get there. I was glad that his
sister Lisa and her husband David had followed him down the highway that morning. He like
me let Angel know that what she was thinking about doing was not pleasing to him either.
Angel agreed to not turn off the machines, Keith and I would take care of him so that she
could raise Joshua. I knew that day that this battle would be long and very
hard. Soon we were on the walk across the street to tell the
Doctors to take the no code off of Kaleb. One of the nurses came into the room, Angel took
him to the side to let him know that she had decided to let Kaleb live. I was talking to my
sister-n-law, when he left the room I noticed Angel was crying. I asked her what was wrong?
She told me that he had said she was making a big mistake, that "He is going to die
anyway." When I came to myself I was standing at the nurses station. I told him to not give
us his opinions when told of our wishes. And to never speak the word die or dying in my
grandsons room again. He said he was sorry but he had read Kalebs test results, "he is brain
dead" and all your family is doing is prolonging his death. I told him that we did not control
life or death, only God knows when any of us are going to die. But after everything we had
been through, we did not need everyone trying to go against our religious beliefs. We had
came to Charleston with a highly intelligent, happy little boy and look where we were now. All
because we put our trust in a man. Everyone was upset that Angel had changed her mind,
they also voiced their concerns over the quality of life he would have. I have to say that both
my sons and my daughter-n-law accepted that Kaleb should go home even if to die. That day
there was no joy or happiness over getting my way, I knew that there were no real winners or
losers we all loved Kaleb. We just had different opinions on what was the best thing for him
now.
CHAPTER TEN
WALKING BY FAITH...
That next day I decided to go home with my husband to make plans on how to get Kaleb
home, where to take him to, and to prepare myself for what I knew would be the hardest job
of my life. I prayed and asked God to give me the strength it was going to take to stand for
what I believed was right. I asked him daily to comfort me and lead my steps and my tongue.
It was the hardest thing for me to get control of. When I would become angry I wanted to
blow off my anger on everyone. I gave the Lord my rage over the circumstance, I started to
listen more than talk. I let my spirit lead my responses. It was very hard, some times I wanted
to scream "No, you don't understand and you can not imagine what I'm feeling" because I was
having feelings of hurt beyond anything I could have ever tried to prepare myself for. But I
would take a deep breath and reply with a smile, I'm just trusting God, when he is ready for
Kaleb I accept his will. I always tried to say something to give God the glory no matter how
bad it was looking. I knew in my heart that if I kept my eyes on God that Kaleb would make it
home.
II Timothy Chapter 2
Thou therefore, my son, be strong in the grace that is in Jesus Christ.
And the things that thou hast heard of me among many witnesses, the same commit thou to
faithful men, who shall be able to teach others also.
Thou therefore endure hardness, as a good soldier of Jesus Christ. We as Christians like
being in the boat until God calls us out. Alot of people look at the dark, deep water instead
of keeping our eyes on the Lord. When we face that water, we have a decision to make, we
can either keep our eyes on Jesus or we can look at what the devil has put in front of us
and just give up. I know in my heart if I had ever looked at Kaleb, and saw all the things
that the medical professionals were telling me I would have given up. But, I kept my eyes on
God. I kept repeating his word, he says he will honor his word and God does not lie. So
when they said there was no hope, I went to my Father and I let him give me strenth, faith,
and hope that I knew he alone could provide.
When you feel like it is the end theres no way out, look to the Lord, he is our problem
solver. All you have to do is have faith and hold onto his big hand when you think your
going under! Watch him move for you too.
CHAPTER
ELEVEN
COMING HOME.....
On July 31st Kaleb underwent another operation to insert a trach in his neck so he could
come home on a breathing machine and a tube was placed in his stomach for us to feed him
through.
On August 6th, Kaleb was flown from Charleston to Greenville children's hospital to get ready
to come home. We were working on getting a mobile home making it handicap accessible and
set up for Kaleb. We were told that in one month we had to have everything ready and have
passed a training program to prove we could meet all his daily needs. We would go see Kaleb
in the mornings, go through two to four hours of training and then we would come home and
my husband would sleep about two hours and have to go to work all night, while I worked in
the house preparing it.
If God had not been with us we would have never been able to meet the demands placed on
our lives. Kaleb then started to run a fever, he had a foul smell coming from around his trac
hole. After a test we were told that he had a staph infection called “Mersa” and that they
could give him ten days of strong antibiotics but it could kill Kaleb. We went for treatment. It
is under control but he will always be a carrier now. It can flare up at anytime. Just something
else to pray about!
My mother-n-law and father-n-law went out of their way to help us get a home ready for Kaleb.
We had to get an electrician in to place a new breaker in Kalebs room for his breathing
machine. Keiths father had a man from his job donate his services to meet that need. We had
to have a heating and air conditioning man come in to service the unit. We had to wash all
the walls down with a disinfectant to prevent breathing problems, we had to rip the carpet up in
Kalebs room and put down tile so he would not get a lung infection. My youngest son and his
wife purchased the new tile to replace the carpet. My oldest son bought the ceiling fan and
Winnie the Pooh decorations for the wall. My father and stepmother put up mirrored closet
doors. My husbands grandmother gave us money to help get everything ready. . My brother-n-
law came and helped widen the doors so Kalebs wheelchair could pass through. My husband ,
brother-n-law, youngest son and ex-husband built the wheelchair ramp on one of the hottest
Saturdays that August. Churches from all our family members sent all the items we needed to
take care of Kaleb. (three dozen white washcloths, white towels, white tee-shirts split up the
back for Kaleb to wear.) and the long list of things we would need daily to care for Kaleb. A
man who wanted to remain anonymous sent five sets of sheets to fit Kalebs hospital bed. In
the latest children's print. Our community as a whole helped make it possible to bring Kaleb
home. Kalebs Meme Ivey supplied him with diapers, great-aunts and uncles gave to meet his
needs. I have never seen things come together so wonderfully. God had truly blessed Kaleb
and us. If it had not been for everything that everyone did we may not have been able to
care for him. I spent the nights alone praying for God to bless our home and to touch
everyone that came into contact with Kaleb or us. I asked him to use this situation to allow us
and others to glorify him. I told him that if one soul was saved by them seeing or hearing
about Kaleb I would be able to accept what we had been through.
I had some very low points before bringing Kaleb home. The devil tried to fight me by telling me I
was wasting my time that Kaleb would not live to come home and that if he did come home the Doctors
would be right he would not live long outside the sterile environment. One night while alone I had been
listening to one of my southern gospel tapes and talking to the Lord, I had been hanging pictures of
Kaleb on his bedroom wall when all of a sudden all the pain and hurt for what I had lost came rushing in.
That was one of the first times. I yelled out at God, yes yelled. I was crying so hard I could hardly
breathe, I looked to the heavens and said "God if Kaleb does not live your going to have to help me to
over come my anger. You are what I was raised to believe in all my life and if Kaleb dies you are going to
have to help me understand why!" I now know that had God taken Kaleb he would have prepared me
before he did. So as you can see the battle has raged not only with Kaleb but with me and my husband.
On September 8th, Kaleb came home by ambulance. When I saw it pull up and I saw my husband get out
of the back, I ran to Kalebs room and started crying, this is not the way it was suppose to be. He was
suppose to come home like all the other times, better. I wiped my eyes and said I thank you anyway
Lord. I over the last three years have said that anytime things have gotten bad. Then we started the
twenty-four hour a day care of Kaleb. We have had alot of sleepless nights, days when you do not even
get to eat a meal until after midnight. I have went days without getting to take a bath. At first we had my
sister-n-law, my daughter , my husband and myself taking shifts to care for Kaleb. Then In February my
mother moved in with me to help also. And to tell you the truth I was too hard on all of them. I at first
would become angry if anyone was five minutes late with a feeding, medicine or turning him. I would
make the comment that if I had to take care of him alone everyday to do it right I was willing to do what
ever it took. I would keep him alive by myself if I had to. Well in July everyone but my husband quit
coming to help me. I would go for days with little or no sleep. I finally said it’s ok if Kaleb is a little late with
his bath that is alright. If I go to sleep and he is a little late with a meal that's ok. He was getting feed
every three hours, it was not like he was being starved. I decided that the laundry may pile up, I would
wash it when I could. And I started cleaning my house on the week-ends when my husband was off from
work. Some days we may eat soup and sandwiches, and some nights Kaleb may require less attention
and we get to unwind and spend a few moments together. I do not worry about the little things as much
anymore. Kaleb now sleeps at night from midnight until about five am. It is easier now. When I see him
smile it makes it all worth it. When he turns his head toward me when I'm talking to him to look me in the
eye, holds his head up by himself and just last night he started sucking his "binky" again. I give all the
glory to God, people say Kalebs alive because of me and my husband and he is lucky to have us. I
always tell them how wrong they are. We are lucky to have Kaleb, all we have done is continue to love
him, God has blessed the three of us with each other. We praise him for everything he does for us
everyday.
We have been blessed to have had so many people of God praying daily for Kaleb and us, all the
churches, the people on my mother-n-laws mail route, Roosevelt Kimbell, Charles Hostetler, Also our
friend who has been there since Kaleb was born who has stood with us believing for a miracle Martha
Smith a.k.a. Ms.Martha, I love you like a sister. You have always been there for me, just in time alot of
times. Ms. Martha went to be with Jesus 7-06. Thanks also to Pastor Richard and his church for their
prayers. To Dixie at Eckerds and everyone there that calls Kaleb the "Eckerd Baby". Thanks to the
prayer group that came shortly after we brought Kaleb home from the hospital from Restoration Church,
Arthor,Betty,Tammy,Mike,Teresa,Y'all showed Kaleb such love that night. Each of you taking turns
holding and rocking him while you sang to him. Most people who see a child like Kaleb will then back off
but the love you showed was so appreciated.
And Kalebs family who has loved him. His mother, brother, sister, stepfather, Papa Ken, Memaw Brenda,
Papa Mac and Granny Joyce,Granny Terri,Aunt Ashleigh, Aunt Jen, Meme Ivey, Aunt Linda, Aunt
Deana, Nanny and Papa Buddy, Aunt Lisa and Uncle David, Granny Garrett, Angie and David Bishop,
Brian Garrett, The Lyman Post Office. And to my mother who has always been here for me, even when I
was not so nice. I love you. Chris and Angie who have came every Sunday after church to help bathe
Kaleb in the tub. And also Uncle Chris for all the hair cuts. To my brother David I love you too, brother.
Also to my father and stepmother, for everything yall have done over the years to help us care for Kaleb.
The handicapped van that gave me and Kaleb a way to go again. And the opportunity to have Kaleb in a
home with room to meet his needs. That now sits less than a mile from his resting place. I love you.
And last to my husband, where do you find the words to thank someone for all you have done. For
putting up with me on the bad days, for loving Kaleb the way you always have, for giving up life as we
knew it to work and sit home to care for Kaleb. For going hungry when Kaleb needed something extra
that week. For all the sleepless days and nights, for holding me when I felt like I could not go on. I love
you and Thank God that he put you and your family in my life.
Also it is only fair to Thank everyone at G&P Trucking, TNT Trucking and Poly-Deck for being so
understanding when Keith had to miss work to be with Kaleb.
And to my heavenly Father I give you all the honor and praise. I do thank you for this valley, I love you
Lord. I pray that this will go forth and be used to glorify you. And to you where ever you are today, if the
battle in your life is raging, if man tells you there is no hope, if your at the end of your rope hold on to the
Lord. Call on his name and watch your mountain move. I pray today for you to have a peace come over
you right now in the name of Jesus. I pray for God to bless and meet all your needs. And satin I bind you
and rebuke you and cast you away from Gods property in the name of Jesus. I plead the blood of Jesus
Christ our Savior over this life.Amen.
To Phil, we miss you and think of you often. Knowing you, made us all better people. See you again one
day. Rest now on your mountain....Born:7-4-63, Called Home: 8-27-99 “Ain’t Nothing But a Thang!”
Your way of telling people not to worry!
I also want to Thank God for those that were a part of Kalebs care in the end. Barbara Roehl PT, Kalebs
favorite person. Linda Remick OT, who made it possible for Kaleb to color again. And our dear Natalia
Mushini RN, who Monday-Friday rendered care with love and compassion. The three of you will forever
remain a part of me. Jack and Joey Stribbling. Pastor Bobby Inman, Thanks to these and all of you!
December 5th, 2005 Update:
Kaleb recieved his MIRACLE as an early CHRISTmas present. He has now went to “see Jesus”. Kaleb
passed peacefully @ 10:07am. We miss him more than words can express. I tell him everyday “ I will
meet you in the morning, Baby”. I am now longing for home even more. Below is what we had in Kaleb’s
Notice.
MY FIRST CHRISTMAS IN HEAVEN...
I see the countless Christmas Trees, around the world below.
The tiny lights like heavens stars, reflecting on the snow.
The sight is so spectacular, please wipe away that tear.
For I am spending Christmas, with Jesus Christ this year!
I hear the many Christmas songs, the people hold so dear.
But the sounds of music can’t compare, with the Christmas Choir up here.
I have no words to tell you, the joy their voices bring.
For it is beyond description, to hear the Angels sing.
I know how much you miss me; I see the pain inside your heart.
But I am not so far away, we really aren’t apart.
So be happy for me dear one, you know I hold you dear.
And be glad I’m spending Christmas, with Jesus Christ this year.
I send you each a special gift, from my Heavenly home above...
I send you each the memory of my undying love.
After all love is the gift more precious than pure love.
It was always most important, in the stories Jesus told!
Please, love and keep each other, as my father says to do.
For I can’t count the blessing or love he has for you.
So have a Merry Christmas and wipe away that tear...
Remember I’m spending Christmas with Jesus Christ this year!
This completes this story, the one of an Amazing little boy.
One that Jesus loved so very much, he came and took him home.
Kaleb did serve “His” purpose by coming to this place. My life will never be the same. Because God
allowed me to hold one of his Angels, one he chose to come here and spread his unconditional love. I
Thank God everyday for the honor of having Kaleb for almost eleven years. I did see so many amazing
miracles with our Kaleb. God always had his will. As of this writing I must say I still at times wonder “why”
this was Gods will, as Kaleb fought so hard to live. He suffered the pain that I should have endured,
cause he was but an innocent child. But I know that all things work for the good. This is what the Bible
says about Gods plan. I know that I will see Kaleb one day very soon... that brings me comfort. When this
life passes away and I finish this race, I will look upon Gods face and after seeing Jesus, my Kaleb I will
again embrace!
Pamela Gregg
Kaleb’s Nena
and most important how God's hand has kept us and Kaleb, after the doctors could do no
more to save this very cherished child that we love so dearly. My hopes in writing this book is
to let you know that God is still the same God that spoke with Moses, split the waters, and
walks with each of us everyday. It is only by the love and grace of God that each of us rise
in the morning and lay back down each night. I have seen his mighty hand move so many
times in the last five years, since Kaleb came into our lives.
To my Grandson Kaleb, I love you more than I thought I was capable of ever loving anyone.
You brought the sunshine back to my world when you were born. I look at you now and I still
see my Kaleb. I at times late at night can almost hear your laughter when its just you and
me in the room. I still kiss your little button nose like I've done so many times since your birth.
I pray every night for God to please let you wake up and come back to Nena and Papa. I
know that our heavenly Fathers will must done. I still pray that this is his will. But even if he
calls you on home I know you will be in a better place and I will see you again one day. You
are still my special boy. I love you too, Kaleb.
Love Always,
Nena
The following was written over the years beginning in 1998.
CHAPTER ONE
THAT VERY MOMENT....
I had been mad at God for a few years, I blamed God for alot of pain that had came into
mine and my children's life. I was raised by a good God fearing mother, who had raised me
to put all my faith not in man but in our heavenly Father. But it is hard to remain faithful
when so many bad things happen in your life. And God will let us run... but when he is ready
to deal with us he will get our attention. Sometimes like he had to get mine. With someone
you love.
Here we were in the delivery room of this small hospital, my grandson was just about to
arrive. I was so afraid and happy all at the same moment. When they held him up I fell in
love with Kaleb at first sight. He was so perfect, so tiny, and the happiness I had needed for
a very long time to come into my life. It was like the sun rose in my life at well past midnight.
He pushed all my hardness, un trusting, and bitterness away in one moment. I was like a child
on Christmas morning. I stayed until almost day light rocking and getting to know this baby
boy. I went home to sleep only a couple of hours before returning to the hospital to spend
more time with Kaleb.
It was that afternoon that I noticed that Kale's little mouth looked blue, under his fingernails
looked blue. My daughter asked the nurse about the babies color, she replied that some
babies have more trouble maintaining body temperature and that we should keep him bundled
in a blanket. But no matter how much we bundled, Kaleb's color did not improve. I left the
hospital that night feeling a little nervous, but assured that the nurse knew what she was
talking about. I slept good that night, tomorrow Kaleb was coming home!
CHAPTER TWO
A VERY BAD DREAM....
The day was like spring, the air was crisp and fresh. The sun felt warmer than ever before. I
had started early that morning recleaning Kaleb's room to bring him home. Shortly after noon,
my father-n-law came. He said that he was there to take me to the hospital, my daughter had
called him and said something was wrong and she needed me! While putting on my shoes I
was saying how I was sure there was really nothing wrong. My daughter was a new mother,
she was just nervous and needed me to calm her fears. Looking back I was trying to calm the
fears inside of me.
When I walked into Angel's room I had felt those fears intensify. Kaleb was gone, Angel was
sitting there in tears, I told her she had to tell me exactly what had happened. I saw the terror
in her eyes as she began to talk. She kept saying they came and took Kaleb and they
haven't brought him back, he has been gone a long time. Who took Kaleb I remember saying.
The nurse was her reply and they will not tell me what's going on. I got up and told her I
would find out what was going on as I left her room. At the nurses station I found no one. I
stood there so dazed. Had someone pretended to be a nurse and walked out with our baby? I
had seen that on T.V. more than once over the years. My fears suddenly deepened. I ran
thru the double doors that led to the labor and delivery rooms. As I entered I found a nurse,
she grabbed my arm as I tried to explain which baby I was looking for. She said I needed to
go back to my daughters room, the baby was VERY sick and that the doctor would come and
talk to us as soon as he had Kaleb stabilized... STABILIZED... I turned to her and with a
demanding voice that did not sound like mine but someone who may have just had the wind
knocked out of them, I shouted I was not going anywhere till I saw my grandson. I could not
go back to Angel until I saw him with my own eyes! I needed to be able to comfort my child
and tell her everything would be alright, that's what a mother is suppose to do. That's what my
own mother had done so many times in my life! At that moment I was in shock... the world
had just crashed down around me. The nurse said to wait and she would see what she could
do. I did not wait, I followed her into a room where just two days earlier I was rocking this
child for the first time.
Now as I looked in the room doctor's and nurses were all around what must have been Kaleb.
The nurse turned and saw me and told me I would have to wait in the hall... but my eyes had
found Kaleb between the crowd. But this baby was blue and black, this baby looked dead. A
doctor must have seen the fear on my face because he took my arm and moved me to the
corner of the room. My eyes were froze on the area where I a moment earlier had seen our
baby, only now all I could see was the back of someone in the crowded room. I did not hear
one word this man had said. The nurse lead me out of the room, I could not even feel my
feet and legs moving. I came back to myself when she kept saying my daughter needed me.
What was I going to tell my child? How could I comfort her now? The baby I had just seen
was not going home to sleep in his bed, I had seen that in all their faces! A doctor came up
behind me and interrupted these thoughts by saying something about a major heart problem of
some kind... I felt as if the floor was sucking me up like in those old horror stories you see
late at night. His next statement was " You need to tell your daughter that this baby is NOT
going to make it " I can still hear him saying that like it was yesterday.
That's when my spiritual up bring kicked in , it's like an assurance came over me. I told him I
was not telling Angel that about her baby... " Your not God ! " I remember saying. You are not
in control of life or death, I told him I knew the man that made Kaleb's little heart and I would
not put my trust in a doctor ... he was just a man. I then told him to transfer Kaleb to a
bigger hospital where he could get the care he needed. I did not care where we had to go.
He gave me his opinion and walked back into the room where Kaleb was being worked on.
That became the first opinion from a medical professional that we have had to hear so often
over the last four years ... " you have to be realistic, I do not want to give you false hope ."
I turned to the nurse and asked her if she believed that Jesus had came to this earth and
died for our sins. She looked at me and simply answered yes. I then asked her if she
believed that if two agree on earth touching any thing , that they could ask and it would be
done for them by our heavenly Father? She again answered yes. I then told her that I needed
to know if she believed in divine healing ... again she said yes. I then asked her if she would
go and lay hands on my grandson and believe that God would heal with me. She shook her
head yes this time. I told her that I had to pray for Kaleb before I could talk with my
daughter. While she was gone to ask if we could pray for Kaleb, I began to talk to God. For
the first time in a couple of years I was getting back in touch with the Lord ... or was he
getting back in touch with me ? I know that I ask him back into my life , I prayed for him to
help me face what was going on in my life . I felt a peace come over me , I felt God
comforting me in my time of need . All my life I had heard the preachers talk about it , my
mother had told me about it but until that moment I had never felt Gods arms wrap around me
. I believed in him , I just did not think that I would really ever feel like this . All of a sudden
everything my mother had ever taught me became real ! I was important to God , he did care
about me. He was in control. All the thing's that I had just heard myself say were REAL.
The nurse motioned for me to come in , when I was by Kaleb's side , seeing him like this was
so hard. Then the devil tried to fill me with fear and doubt. There were so many tubes and
needles in this tiny child , the only place I could see to touch him was on his shoulder . I
closed my eyes and began praying a prayer like my mother would have prayed. I first cast
satan away from me and Kaleb , I told him to get behind me in the name of Jesus. Then I ask
God to touch Kaleb in the name of his son Jesus Christ , that's all I knew to say. Then I just
started thanking him for saving me and hearing my prayer. I felt a warm feeling in my hand go
into Kaleb. It was a feeling that I can't really explain. I just knew that the Lord had touched
Kaleb. It was then time to go and tell my daughter. I asked the Lord to give me the words I
needed to give her this new's. I did not have very long because Kaleb was almost ready to be
transferred to the other hospital. I remember before I told her about Kaleb , I said it was bad
but she had to believe that God could heal him. And that no matter how bad the doctors said
it was that she would have to remain strong and put her faith not in man but in God. She
promised me she would. Then they brought the baby in for her to say goodbye , but our
entire family that was there held hands around her and this baby and prayed. We did not say
any last goodbyes , I knew in my heart that it was not time for that.
I had to believe.
Proverbs 3 : 5 , 6
Trust in the Lord with all thine heart
and lean not unto thine own understanding.
In all thy ways acknowledge him , and he shall direct thy paths.
CHAPTER THREE
IN THE DARKNESS
The lights were flashing and then they turned on the siren, this suddenly became real to me.
This was not a dream, my heart was breaking inside. That sound made my body go cold. We
were in the car going across town to the bigger hospital, I looked over at my husband and
started crying and said God just can not take this baby. I started asking God to please take
me... I have lived my life, he has not even started his. Then it came to me that I had not had
a chance to sing Jesus loves me to Kaleb, I had sang that to all three of my children. I had
not had the chance to cuddle up in the bed with Kaleb and smell that fragrance that only
babies have.
I came back out of my thoughts when we arrived at the hospital. We asked where to go, then
ended up in a waiting room. They had told us that as soon as some test were ran the doctor
would talk to us. It seemed like forever before the nurse came and took us to a conference
room to wait on the doctor. My brother, sister-n-law, husband and I did not speak a word as
we waited. I think we were all talking to the Lord with all of our inner soul.
The man that walked into the room was in his early forties, he carried himself well. All eyes
were on him. I knew in my heart that what this man was about to tell us would change our
lives forever. I was impressed and comforted with the way in which he started his meeting with
us. He said that before he gave us his findings he would like to pray with us if we did not
mind. I told him we welcomed prayer.
I knew at that moment that we had not came to meet this doctor by accident. The Lord had
used this man to let me truly know that he had heard my prayer.
His name is Dr. Ben Horne, he said the sweetest prayer that night. He prayed for God to give
us strength, and to comfort us in the up coming days. Then he took out a pencil and paper
and started explaining Kaleb's heart problem. The name for his defect is Hyperplasic Left
Heart... which means half a heart. One side had never developed in the womb. He explained
that Kaleb would have to be flown to Charleston, S.C. to have surgery. That it would be
daylight at the soonest to have him flown down. Then he said that Kaleb's veins were
collapsing and that if this last vein in his head did not hold up until the surgery that they
would not be able to help Kaleb. Kaleb did not have the valve going from the heart to the
lungs that supplies oxygen to the blood. The medicine that they were giving Kaleb was
keeping the hole opened that closes up anywhere from two to five days after birth. Without
this hole opened Kaleb did not have a chance for survival, since he did not have the valve
there to allow the blood to flow into the lungs.
After he had explained and answered our questions I asked to see Kaleb before going back to
check on my daughter. I can not remember if I have ever thanked him for taking the time to
pray with us, but over the last four years I have trusted in this man's oppinion more than any
other doctor involved with Kaleb's care. I guess because he does not lean to his on
understanding, instead placing these tiny babies where they belong in God's hands.
I looked at my husband as we were washing up to go in the I.C.U. and said " God don't make
no Junk..." we in years earlier had seen a poster that had said that. God just brought that
poster back to my memory at that minute. He knew I needed that before I walked in that room.
There were babies everywhere, I never knew so many babies were born so sick. A nurse lead
us over to Kaleb. He was so blue, his little body had tubes and lines everywhere. I prayed for
Kaleb silently this time and attempted to sing Jesus loves you to him. But the tears were
streaming down my face. God, please give me the chance to teach this child about you! Let
me rock him and sing to him, let me hear him laugh, see him grow. I made a covenant to the
Lord that if he would spare Kaleb I would testify of the miracle we had received. I promised to
take Kaleb to church. Please do not take him so soon, let him live I prayed. I stroked Kaleb's
head and told him I had to go see his moma but I would be back.
By the time I got back to my daughter she had cried so much that her eyes were swollen
shut. The doctor had already called her and explained everything to her. She had been left all
alone. She demanded that my husband remove all the babies things from the room, he just
looked at me. I told him to go ahead and place Kaleb's things in the car. After Keith had left
the room she started crying and said she could not look at the babies stuff. She expressed
the fear of never seeing Kaleb alive again. I told her she had to put her trust in the Lord.
She then asked me to go back with Kaleb so I could be with him and let her know how he
did during the night. Before leaving I went to the nurse and told her my daughter needed to
be knocked out, I could not leave her so upset, but I did need to go back to the baby. I was
so torn between my child and her child.
We were back on our way across town when it hit me I had not told my mother about the
baby. She had not seen the baby due to falling the day his mother had went in labor. She
had hurt her back and was having trouble getting around. I must go tell moma I told my
husband. The daughter in me started coming back now. I needed my mother to tell me it
would be alright. I wanted her to see Kaleb, her great-grandson just in case he did not live.
That was very important to me. I told Keith we had to find my mother. Then I resumed my
silent prayer to God, begging for Kaleb to live. By this time it was around 3:00 am, I still had
to see my mother. I needed her to pray. I believed in her prayers. I wanted my moma to
make everything alright, the way she always did when I was a child. I was frantic by the time I
knocked on her door. When the door opened I think I fell more than walked in. I said " Moma,
they said our baby might not live. " That's all I could get out before falling on my knees at
her feet. I placed my head in her lap and remember saying "Moma please ask God to take
me... not Kaleb, he is just a baby, he does not deserve to die. "Please moma P L E A S E...
"She started praying for God to ease my pain and comfort me. After a few minutes I felt so
much better. I asked her to please come see Kaleb, to lay hands on him and stand with me.
Even in pain she agreed to go. I had to help her dress because her back injury prevented
her from lifting her arms above her head.
We were again in the car on our way to see Kaleb.
Mark 11:23
For verily I say unto you, That whosoever shall say unto this mountain, Be thou removed, and
be cast into the sea; and shall not doubt in his heart, but shall believe that those things which
he saith shall come to pass; he shall have whatsoever he saith.
We have to hold on to God when everything is crumbling down around us. We must remain
faithful, our hope lies in our heavenly Father. No matter how dark it gets you have to trust in
the Lord! If you give up you are cheating yourself out of a MIRACLE... God always honors his
word. We sometimes look at the modern world and we think that people know more than God.
Where ever your at right now, whatever your problem is God knew before you were born. God
will be your problem solver, he will be your comforter, he will meet every need. Ask him.
CHAPTER FOUR
GIVING IT TO GOD....
I heard a story told once about a child asking his father to please fix his favorite toy, the boy
would not fully release the toy so the man could fix it, the story was used as an example of
how our heavenly Father must feel when we don't give him our broken lives and let go so he
can work.
It was when I stopped telling God what he needed to do, and said "your will be done" that
Kaleb began to fight to live. He was flown to Charleston the next day, he underwent his first
heart surgery at five days old. He did so well that on March 11, 1995 the Lord let us take
Kaleb home. It was on a Saturday. And the next morning I kept my promise to the Lord, I
took Kaleb to church. I told of the miracle that we had received.
I spent many hours rocking Kaleb and singing to him, I cuddled with this special child and
smelled that sweet infant smell. I was very thankful to the Lord for allowing us to love this
child. He loved the outdoors, he would cry until we bundled him up and took him out in the
March air. He would look at me with such a deep intense look that I now understand that we
are bound together spiritually. Kaleb brought the innocence of life back into my world. We
spent many hours together just enjoying the simple things of this life. Money was not as
important as it had been before. I was in our world not the rat race anymore. Kaleb has made
me a better person, he is responsible for me being able to love life and people again.
The next three and a half years were the best years of my life. Kaleb spent alot of time with
me and his Papa. We could ask him what was he and he would reply "NENA"S SPECIAL
BOY!" so sweet, and a little spoiled. He would go across the country in our Peterbuilt and
make every step his Pa made. He was a little truck driver, or so he thought. We would have
to make him stay home with his Moma and new little brother. Kaleb has been everywhere, he
saw the United States from the windshield of a big rig. He loved the attention that all the other
truckers gave him. That's what makes it so much easier to deal with Kaleb's condition now, we
gave Kaleb all the love and the best life as we could. We did not keep him locked inside like
a sick child. I knew the Lord was taking care of Kaleb.
Sitting here now I have so many special memories, his eyes the first time he held a frog, me
and him sitting by the window watching the red and blue birds eating from the feeder, planting
flowers together. The three of us cuddled up in bed, Kaleb, Papa and Nena in our little world.
We were so bonded, Kaleb was our world. If we weren't with Kaleb we were making plans to
be with Kaleb.
When Kaleb had been home from his first surgery about three weeks the Lord gave me a
poem one early morning. I had just finished feeding him and he was laying there in my arms
as the sun was rising on another spring day the Lord had given us. I could not hold back
the tears that morning, I was so thankful to be holding this special gift from God. The room
was so quite, the only sound was that of the little boy with half a heart cooing in my arms.
THRU KALEB'S EYES
An Angel sent from above, he's brought to me such a love. Thru his eyes of blue, I now see
that my God is really true.
His little heart has had to fight to stay here in this life, but when he smiles my day becomes
so bright. And once again I thank the Lord for shining his mighty light.
At first I was sad to think my first grandson wasn't alright, but soon I said Lord have your will
and Kaleb began to fight. A half a heart is all he has, but I know he will be alright, cause
God is holding him in his hand and Kaleb's holding on real tight. Everyday is precious now
not like the one before, cause thru Kaleb's eyes I see the wonders of our Lord. If he should
ever go to sleep never to awake, I'll know he served a purpose by coming to this place,
Cause thru Kaleb's eyes his Nena learned of Gods AMAZING GRACE...
Kaleb's Nena
April, 1995
Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find
grace to help in time of need.
Hebrews 4:16
CHAPTER FIVE
MEMORIES OF KALEB
The first Christmas with Kaleb was so special, he loved the excitement.
His first birthday, feeding his Papa chocolate cake. His first word was "Papa", his first sentence
was " Bye-Bye Papa". His favorite song was Amazing Grace, I could turn it on and he would
raise his little hand and wave it to the Lord. He was always such a spiritual child. You could
feel the presence of Angel's around Kaleb. I have pictures of me and him together where you
can see a glow all around him.
I remember the first time I was going to let Kaleb smell flowers in the yard, he smelled then
took a bite. It was so sweet this little boy to me. By the time Kaleb was one and half years
old it was time for his second heart surgery, I prayed for weeks for God to guide the surgeon.
I prayed for him to let us keep Kaleb a little while longer. Once again Kaleb came right back.
After this surgery he became stronger and started to walk. He would sing little songs, one I
thought was so cute was "row, row, row your boat." little hands turning and stretching out. He
was such a joy to be around. I could tell Kaleb to slow down that he was a sick baby and he
would reply " NOT sick Nena!" I finally decided since he did not think he was sick I shouldn't
try and tell him that. I had to let him be a little boy. He would run and play and when he
would get tired he would come get in your lap and rest for awhile. Always laughing and
finding something to do. You could say show me your "trouble" look and he would roll his
eyes away and give you a slight grin. He loved for his Papa to take him for a walk, they
would leave hand in hand and return with Papa holding him in his arms. Kaleb tried but
before making it home he would get so tired. If it was raining outside and Papa would say no
walk today its raining, Kaleb would get so upset and say "NOT raining Papa!" Even after we
showed him the rain. He was very strong willed, I guess he had to be, to overcome what he
had to.
He would cry to watch a preacher on T.V., we finally got to the point that if we turned it on
we would ask him if he wanted cartoons or "Jesus" it was usually "Jesus". He loved to watch
Benny Hinn. He would always say "Jesus make them better", I asked him once if Jesus was
going to make Kaleb better? He replied "Jesus make my heart better". Well now the Doctors
say Kaleb's heart could last twenty years just like it is. I guess Jesus did make his heart better.
Kaleb loved his little brother, when we were anywhere and he would get something he would
always say "brother one too!" He was a very good big brother. He made sure Joshua had a
drink and cookie most all the time. He started asking for a "baby sister" not long after Joshua
was born. We kept telling him he was not getting a baby sister. We even went so far as to
buy a dog and name her baby sister to try and please him. Kaleb's baby sister was born
March 22, 1999. I guess he knew alot about what the future held for us and him. He would tell
us things that we would wonder what had made him say it. He was a very surprising little boy.
I loved to just look at the stars with Kaleb, his little arms around my neck. I would sing twinkle
little star over and over, but when I would stop he would say "sing it Nena." If he could just
ask me now I would never get to tired to sing it again! I guess he and I would still be singing
to the stars as the sun rose in the morning. But I try not to wish for what I had with Kaleb or
question God about this empty feeling I have without him now, Cause this is all Gods business
not mine. I thank the Lord for everyday I get to stroke his head, kiss his little nose and take
care of the needs Kaleb now has. Its a labor of love, a honor to still be able to smell him
and feel him in my arms. God is so good to us. He helps me everyday to get up and face
the day . If I looked at the situation I would have never made it this long. I hold on to God,
and keep the Faith that a miracle will come. If not in healing , Kaleb going on to his everlasting
life. To never know pain again, to never cry or suffer this cruel world we are in. I believe our
heavenly Fathers will is going to be done, and I know because of Kaleb many peoples lives
have and will change. Kalebs story is to be told so people can believe again, have faith again
and trust in the Lord again. He can change things that look impossible. He is bigger than any
problem we could ever have. All he wants is you to reach out to him, and to let him turn
things back around for you. Trust him, have Faith in him and watch your mountain move!
Ecclesiastes 3:1
To everything there is a season, and a time to every purpose under the heaven....
CHAPTER SIX
" THAT'S , HEAVEN ! ! "
After Kalebs heart catherization, the doctors decided "we need to go ahead and get this last
surgery out of the way" so the date was set for June 9, 1998. It was almost at that moment
that I noticed the uneasy feeling that started haunting me. I would wake up crying for Kaleb, I
would pray for the Lord to let everything be all right, but in my gut I knew things would never
be the same for us or Kaleb.
Being an over the road truck driver, over the years I had made contacts with different people.
I had always told people about Kaleb and the miracle God had given us. One lady lived in
Longveiw, TX. She had a base C.B. radio in her home, she goes by the handle blue waters.
The first time I spoke with her was about three months before Kaleb's last surgery. Early one
morning, before sunrise I heard her come over the radio and break the silence of the highway
and the night. She was saying Jesus loves you and he cares about our life. I reached for the
mike and began talking to this stranger in the night. We only talked for a few minutes before
I was losing my signal with her. I promised to talk with her on my way back through Texas in a
couple of days. We started a friendship over the radio, every couple of days when passing by
I would call her name and she would come back and talk to me. We talked about my life on
the road, my grown children and we talked alot about Kaleb. I told her one day about my
fears and the next procedure for Kaleb. I asked her to pray about it and let me know if the
Lord showed her anything. We said our goodbyes and I drove on into the night. I spent many
hours behind the wheel crying and praying about Kaleb. I would get up in the afternoon and
get up front and express my fears with my husband while riding down the road. He would
always tell me everything would be alright. Then about a week later going through Longveiw, I
called out for "Blue Waters", she came back to me and ask me to find a place to pull over
that she needed to talk to me. I pulled into a little truck stop that we stopped at a lot that
had some good country cooking. My husband went in to get some food and I went back on
the radio to talk to my friend.
She started telling me she had ask her pastor and church to pray for Kaleb, then she said
that a few days earlier while at church the pastor had told her to tell me that sometimes
Gods will is not what we have been praying for. She told me that she had not had a good
feeling when she prayed for Kaleb. I suddenly had heard all I wanted to hear. I was polite and
told her to continue to pray for all of us and told her I would talk to her later.
I sat in the truck telling myself I could not listen to someone who did not know Kaleb or me!
My husband came back, we ate our supper as I told him what she had said. Then I told him
that I just could not accept that God was going to allow something to happen to Kaleb since
he had brought him so far since birth. I also kept telling myself this was the last surgery! I
had to believe that everything would be like the other surgeries, Kaleb would be alright. But in
my heart I knew that was not true. I even told my daughter that things were not going to be
like all the other times. She ask me if I thought that Kaleb was going to die. I told her I did
not think he was going to die but that life as we knew it would not be the same.
I continued to pray about my fears and held out hope that I was just so afraid of losing
Kaleb, that's why I felt this way I convinced myself. I started saying almost daily that everything
was going to go well... I hoped.
On one of Kalebs last trips with us on the truck instead of going to California, we had a load
with one drop in Portland Or. and another drop in Seattle, WA. Kaleb loved to be on the
truck, he would make his Papa pay him for his "working" while on the road. He called the
purple peterbuilt truck our house. He had toys in the closet and all his drinks and snacks in
the refrigerator. He would climb on the bed when he was tired of being up front or playing
and turn on the T.V. to watch his favorite programs. His Papa would find a place for Kaleb to
get out of the truck and play with his remote control truck or ride his tricycle for about an
hour a day. He's played in just about every state from S.C. to the west coast. He loved being
on the road a lot more than we ever did. He would get so upset when I would tell him he
had to go and see his mother and little brother and then he could come back to work. He
would get so mad at me, he would say "Not see moma, go to work with Nena and Papa." We
would have to leave him crying to make him stay home and rest. He loved that old truck so
much when we would take our time off he would still make his Papa go sit in the truck in the
yard so he could get up in it and play. I do not regret taking Kaleb so much on the road
cause in his short life he has been everywhere and saw most everything. He at three years
old was learning as we went through a state. He has seen the deserts with the tall cactus
standing tall as most men, he has seen the most beautiful mountains, the oceans and all the
famous rivers this country has. He saw the wild life in all the different areas. He saw the sun
set and rise on some of the most beautiful landscapes that most people only see on T.V. So
if Kaleb never wakes up fully again I know he did not spend his life locked inside like most
sick children. He loved life, he saw beauty in the simple things that we as adults sometimes
forget to take time to enjoy.
He would see a Toys-R-Us or a Chuckie-Cheese on the side of the interstate and we would
have to stop for a short while for him to just be a kid! He was such a joy to me and his
Papa. We spent so much time enjoying life with Kaleb in three years. We put him before
making money or anything else that is not important.
I was driving through the mountains in Wyoming, it was about midnight on the east coast, but
the sun was just setting where we were at. I had not been talking to Kaleb for miles. He was
sitting over in the passengers seat, binky in his mouth, blanket in his hand and a sipping cup
propped on the arm rest. He could barely hold his little eyes open. Our routine was for him to
fall asleep then I would pull over on the side of the interstate and put him to bed with his
Papa and get back to driving till sunrise.
We reached the top of a mountain and Kaleb sat up in the seat and replied " heaven! Nena "
It shocked me so bad I at first was speechless. I looked at him now on the edge of the seat
pointing to the most beautiful valley below, the setting sun was sending bright beams of light
over the farmers fields. I composed myself and said " Kaleb, have you ever seen heaven? " his
reply only stunned me more. Pointing again he said while still looking ahead " that's heaven !" I
pulled that truck over so fast that I was sure I had shifted our load. I popped the air brakes
and called for my husband to get up! Kaleb by now was looking at me. When Papa stuck his
head out of the sleeper I told Kaleb to tell his Pa what THAT was. He again said that's
heaven. We sat in silence for a moment. Then I ask him again "have you seen heaven
Kaleb?" and once again only more assertive "That's Heaven!" pointing again to the valley below.
As I put the truck back into the flow of traffic I knew in my heart that this baby had seen
heaven. I never questioned Kaleb about it again. When he drifted off to sleep, his Papa and
me discussed how sure Kaleb had been about heaven. When darkness fell and they were
both in the bed I thanked the Lord for letting Kaleb share that with me.
Then a couple of weeks later he was with his mother. He got up one morning, went and
crawled in her lap and told her "Jesus called me." She asked him how Jesus called him and
he replied "On the phone" she then asked Kaleb "well what did he say?" and Kaleb said " him
wants me to come see him, me told him me will!"
My daughter called me very upset she asked me what that would mean, was Kaleb going to
die? I was very upset to hear what Kaleb had said. I told her I did not think he was going to
die but that it was not going to go like the other surgeries had gone. I told her to start
praying for God to protect Kaleb. And that if it was not Gods will for Kaleb to have this
surgery, that God would show us.
I spent days thinking of the things that Kaleb was saying. I prayed most all night while driving,
I would wake myself up during the day in that truck sleeper, praying out loud. I cried alot
when it was just me, and God going down that interstate in the darkness.
But I never felt any better inside about Kaleb and June 9th was coming too fast.
Psalm 31:24
Be of good courage, and he shall strengthen your heart, all ye that hope in the Lord.
CHAPTER SEVEN
" I Love You , Too ! "
The last few day's before Kaleb's heart surgery he began to tell all of us over and over I
Love You, Too. It was as if he heard us telling him I love you, and would respond. I am so
thank-full now for all the times he said that to me, I would give anything to just hear his little
voice again.
The night before the surgery, we went shopping for some new toy's and book's for Kaleb while
he was recovering. When we were back at the motel, Kaleb did not want to open his new
toy's, he only wanted to play with his bubbles. His Papa and him made bubbles out on the
balcony, that floated down to the pool below. He was very solemn that night. He just wanted
to be held. When we got ready for bed, he snuggled down between me and his Papa. He
said his little bed time prayer... Now I lay me down to sleep, if I should dream before I wake I
pray in heaven to awake... He then sat up between me and his Papa and like he was telling a
secret he proclaimed " Me going to heaven, Nena!" I was so shocked, I with a stern voice told
him "No you are not." his reply "Yes me are!" I again told him he was not. He started to cry,
I told him he could go to heaven when I did. He said "But me want to see Jesus!" I told him
that in the morning when the Doctors were "fixing" his heart he could go play with the Angels
but that he had to tell Jesus that he could not stay! I finally was able to convince him that
would be okay. He soon fell asleep cuddled up beside me. I was up most of the night, praying
for God to protect Kaleb, and that if it was not God's will for Kaleb to have this surgery for
him to show me. Now I realize he was showing me, I just did not want to see it. Kaleb was
and is a very loved child. Me and his Grandfather have spent his little life trying to ensure that
he knew how much we loved him. We know he loves us, he made sure he told us enough
before this happened. He knew it would be a very long time before we heard "Me love you
too!" We both miss him now very much, some days are very hard. But we still love him
enough to never give up on God. He is still our "special boy!"
Matthew 11:28
Come unto me, all ye that labour and are heavy laden, and I will give you rest.
CHAPTER EIGHT
JUNE 9 , 1998
AND THE STORMS AHEAD
We slept late that morning, Kaleb was to be the first surgery of the day.
It was almost seven before I woke up and started the rush to the hospital. Kaleb was still half
asleep as we were dressing him to leave. I decided to not put his new shoes on that he had
gotten the night before. We took him in his sock feet. We had preregistered the day before
so we would go straight up to the floor.
When we got to the hospital, Kaleb told me again, "Me not like Charleston" He only knew
pain there. I told him this was the last time he would ever have to come back. I told him the
Dr.s needed to fix his heart. He told me "Not right now me not ready!" I told him we were
already late and we had to let them get started. The Dr.s were already down in the operating
room when we got there. The nurse had to call down and see if they still were going to take
him first since we were already so late.
The nurse hung up the phone and said he was still going first. They did his check in and
gave him medicine to make him sleepy. He was sitting in my lap. His Papa was sitting beside
us, he was lost in his thoughts, Kaleb looked over at his Pa and said again" Me love you, too
Pa" his Papa did not hear him and he sat up and said it again. I had to get his Papas
attention so he could tell him the third time. Papa said" I love you too baby." Then Kaleb
looked behind himself at his mother sitting in the corner, he said "My moma pretty, Nena" I
said yes she is Kaleb. By now he was getting sleepy, he layed over on my shoulder and had
the sweetest smile come on his face, almost like he was catching his breath in amazement
he said " This Nena, Papa and Kalebs house" now he was having trouble keeping his eyes
open, But he was still looking at the ceiling and smiling. Another minute or so passed then he
was in a deep sleep. I did something that day I had never done before, I went and placed
Kaleb in his mothers lap. She and I had so many disagreements in the last three years. She
at times would get angry because me and Kaleb were so bonded. Like I told her on so many
times, he nor I were to blame. He felt safe with me. He was the center of my life. She had
on many occasions hurt me deeply by taking Kaleb away from me. He would be upset and
crying. It was a bad situation.
I placed him in her lap and told her that I was not placing him on the operating table this
time. I in all the other surgeries had done that. I told her it was her place, she was his
mother. I really tried to let her take the lead with Kaleb.
They came and we followed them down the way to the operating room. Me and his Papa
kissed him and stood outside the door while she laid him on the table. Then the three of us
with tear filled eyes walked away. It was about eight-thirty by then We were told they would
update us and that Kaleb should be out in about five to six hours. I suddenly became so
tired, I told my daughter that since her father and stepmother was there that I was going back
to the motel to lay down and for her to call me when she got an update. Again, something I
had never done before. I had always paced the floors when Kaleb was in any type of
procedure. It is hard to explain how I felt that day. I knew in my heart that things were not
going to be good. Me and Keith barely spoke all day. Back at the motel I tried to rest, but
my mind was so restless. At around noon, I had Keith to call Angel, she should have heard
something by then. She had not heard anything. Then I did become worried, what was going
on that the nurse had not even phoned up to say "Everything is going good" that's the way
it had always went. But this was not like then, I knew.
By two I had to return to the hospital, I could not stay away any longer. I watched the
clock. NOT knowing was so hard. Now I was praying almost continuously to myself. My heart
was pounding in my throat. Finally the Dr. came to the waiting area and called us to the hall.
We all gathered around him waiting to hear it went fine. He leaned back on the wall and then
said we ran into some problems when we got inside the heart, all we can do is hope he
lives! My ears began ringing those words, I do not even know what he said after that. I stood
there eyes on him but I could not hear anything. When he finished I remember saying Thank-
you, and turned and walked around a corner and began crying. Keith and I standing there
holding on so tight. We had loved and cherished this child, I kept saying God just can't take
him now. I don't know how long we stood there before I thought about my daughter. I went to
the restroom where I had seen her go. Her stepmother was telling her that she needed to ask
God to forgive her so she could ask God to spare Kalebs life. Well, I looked at my daughter
in the eyes and told her that we needed to go before the Lord for Kalebs life. I told Angel
that we all had to stand together, everyone that Kaleb loved had to love him enough to
believe as one. Then I told her we needed to go see him. I could not believe it. I had held a
happy little boy that morning, who from appearance looked so healthy.
We went back to the waiting area and let them call back to the I.C.U. and let them know we
wanted to see him. They said they were still working with him and that they would come get
us when they were done.
After about ten minutes Dr. Lisa Routen came out. She had been Kaleb's Dr. since he was a
newborn. She said that only one of us could go back, so Angel was going. After they started
down the hall the Dr. came running back and called for me. Angel was leaning against the
wall outside the unit. She was crying, the Dr. had told her how bad Kaleb looked trying to
prepare her, Angel had told her she needed me to go back with her.
Kaleb looked worse than I had ever seen him before. We were not back there but a couple of
minutes when Kaleb went into cardiac arrest. They told us to leave as they were trying to
revive him. We was returning to tell the others what had happened. My husband was in the
hall, when I told him he ran through the doors to the I.C.U., I turned to my daughter and we
started praying as I held her. In a few minutes the doors opened and Kaleb was being
wheeled back to surgery. He was out about forty-five minutes. My husband came out with tear
filled eyes and told me he had to see him and tell him he loved him. I just said I know.
Back at the waiting area, we were greeted by what turned out to be the first chaplain to pray
with us. We were removed from the main waiting room and placed in a small private room.
We all held hands and prayed for God to spare this child's life. After we prayed I realized my
first husband had been holding my present husbands hand during the prayer . When we were
alone again I mentioned this to him and he said with a grin I"ll do anything it takes for my
baby boy. I guess any of us would have.
It was time to go and call our families and let them know what was happening. My mother told
me she was on her way to Charleston as soon as we hung up the phone. I had to make
sure my sons knew. Before Kaleb came out of surgery everyone started coming in.
The Dr. came from this procedure like the first, he said all we can do is “Hope” he lives.
Again another chaplain came and prayed with us. Then we were told that Kalebs lung
preasure had gotten to a dangerously high level, we could let them try an experimental carbon
monoxide treatment to lower it or he would die in a few hours of lung failure. We went for
treatment. They said he still would not make it through the night. That was the first of many
nights I walked the halls outside the I.C.U. Everyone started taking turns going to sleep, but I
felt that I had to stay near Kaleb to give him the strength to hold on. I rebuked satan not
only from Kaleb but from everyone in that hospital who was being attack. I was fighting a
spiritual battle for Kaleb.
After Kaleb had stabilized we were allowed to go back and see him. He had swelled so much
after the second surgery. He looked like my oldest son at his age. I told my husband I just
could not bear to look at him. I did not go back in to see him for several hours. My husband
would go back every hour on the hour for about five minutes to check on him. That first night
we had the chaplain sent to us three times. Then a Dr. would follow with more bad news. But
I just had to believe that God was going to spare Kalebs life.
Time stood still, lifes problems no longer mattered, all my energy was believing that by faith
Kaleb would make it. I had put so much faith in the Dr., more than ever before and look
where we were at now. I knew who was to be our saviour.
Kaleb had four chest tubes instead of the two that is normally used after heart surgery. ( these
are to drain the excess fluid from around the heart)
The Dr.s said they had never seen a patient drain so much fluid not even an adult. On June
12, Kaleb was taken back to the operating room for another heart cath. to see why he had so
much fluid. They still had no answers, they could not understand were all the fluid was coming
from. Later that night his urine turned black. The Dr. told us that Kaleb had liver failure. His
only advice to us again was all we can do is hope he lives. I went back to see him and I
prayed for God to heal that liver. And the Lord gave me a peace.
By the next morning they had packed Kaleb in ice, his fever was 105 and it would not break.
Then I started praying for the fever. From the 13th thru the 19th, Kaleb would start doing a
little better then he would become even worse. On June the 20th the chaplain arrived before
the Dr. again. The Dr. came and told us that Kalebs lungs had hardened, when we asked
what could be done he informed us they could do nothing, he did not qualify for a transplant
because his heart was so weak. Again we were told he would die shortly from lung failure. I
had to hold onto Gods hand and believe. He was my only option.
Later that afternoon my youngest son and my daughter saw what appeared to be a very bad
bruise on Kalebs stomach. They asked the nurse about it and she said that sometimes after a
heart cath. the patient will bruise. And not to be alarmed. Kaleb still was draining massive
amounts of fluid from around his heart, his lungs were getting worse, his liver was to be
tested because it was failing.
The Dr. had told us on the night of June 9, that if Kaleb made it and stabilized, if he saw
this procedure was not working for Kaleb he would take it down. Now because of all that went
wrong he was having to try and justify taking it down, but in the same breath said Kaleb
would not live with this procedure.
I really had to pray for God to help me hold on. It was like taking your car to the shop for
an oil change and the oil leaking out and them saying "well, I don't know if we can justify
refilling the oil." and you know the motor will lock down without the oil. Well, I had taken a
little boy in who seemed so full of life and everything that could go wrong had, and then
having a Dr. tell you he could not justify saving his life. I was angry at them, angry at myself
for not stopping the surgery and feeling like everyone had let Kaleb down. We were suppose
to take care and protect him, the medical professionals were suppose to make him better not
give up on him! I had to get off by myself and ask the Lord to take all the anger from me. I
knew that satin would destroy me if I held on to all of that. I gave it all to God. Kaleb loved
life and people to much for me to become a bitter person. The Lord spoke to me with that
soft, tender voice and said for me to tell that Dr. about Kaleb! Tell him about the things he
had said in recent months about heaven and seeing Jesus. My back was against the wall, I
knew God was the only one who could turn this all around. I started praying for him to touch
the hearts and minds of the Dr.s and let them see that he was in control of Kaleb.
By Monday June 22, I knew Kaleb was getting weak. I demanded to see the surgeon. I was
told he was in the operating room all day. I told them to tell him we would expect to see him
when he came out. We waited all day, about seven that night he came to talk with us.
Again he had us in the hall and then told us that he did not think Kaleb would live through
the surgery. I felt like he had given up on Kaleb! So I let him finish talking and then with a
very calm voice I said " Well Dr. Bradley, I don't want you to ever forget Kaleb Ivey. He was
a very loved child, he loved life, he was happy, he has been all over the United States in a
Peterbuilt, he was a little truck driver, he was a very good big brother, he would cry to watch
Benny Hinn on T.V., he called it Jesus. He told me the night before this surgery that he
wanted to go to heaven and see “Jesus." That's when he looked up from the floor where he
had been staring and said "when did he tell you that?" I repeated the night before his
surgery, I went on to tell him about Kaleb telling me that's Heaven. Then I told him I hoped
he understands that he was not in control of Kaleb we were all there because God had
allowed it to happen. I told him that even without this surgery if its Gods will Kaleb will not die.
By this time he looked up and wiped a tear from his eye, and told us he was sorry. We all
walked away, I told my daughter that now no matter what happens he would remember that
little blonde haired boy. We went back to the Ronald McDonald house and was waiting for
shifts to change at the hospital so we could go back and see about Kaleb. I was sitting on
the upstairs porch when the Lord brought to mind Abraham. He loved his son, he trusted in
God enough to take his son to be sacrificed. Suddenly I knew how he must have felt. That
was no longer a story in the Bible it was real now. I prayed and then the Lord told me it
would look bad but to hold on to him.
I told everyone what the Lord had just given me and told them that something else was going
to happen, and not to become afraid. We had to trust the Lord. Then me and my husband
went back to the hospital. We were a little early so we had to wait a few minutes before we
could go back. As we entered the area where Kaleb was the nurse said the Dr. had been
looking for us. She asked me to get my daughter and she would page the Dr. I sent my
husband to get Angel and I went to Kalebs bed. All of a sudden it sounded as if he was
passing gas but blood was oozing from everywhere. The needles in his arms was backing out
with blood. It was within a minute or so dripping in the floor. I looked at the nurse across the
bed and from her face I knew this was bad. She called the Dr. who told her nothing could be
done. She told me he would not make it but a couple of hours, but the Dr. had said if he
does live until morning he would take the surgery down.
Then I heard over the speaker my daughter asking to come back, I said please lets cover him
up she can't see him like this. She told them to wait a moment and she placed a towel
across Kaleb and wiped off his face. She then wiped the blood off the floor and went over
the speaker and told them they could come back. Another nurse was in a corner on the
phone with the Dr., as soon as Angel came in they sat her down in the corner and handed
her the phone. My husband had came by my side and I was telling him what had just
happened then I saw the chaplain enter the room. I knew the bad news was coming next.
Angel hung up the phone and said Dr. Bradley said if Kaleb made it thru the night he would
put Kalebs heart back like it was when he entered the hospital on June 9th. She then looked
at the chaplain , then at me with a confused look. I pulled back the towel and she saw the
blood. She started to cry and I told her Kaleb deserved for us to remain strong for him. The
chaplain said a prayer and left us by the bed. I had a hold of Kalebs hand. I put my face
close to his and I told him how very special he was. I told him that "everybody loves Kaleb"
and ask him if he knew how much he was loved, for the first time in weeks he shook his little
head yes, he was trying so hard to open his eyes but he just could not. Then the nurse
asked us to please step out so they could clean Kaleb up.
We all went outside with such a heavy burden. The child we loved, had stood over praying for
a miracle was going to leave us. I told everyone that if God was going to take Kaleb we had
to show him as much love as we could until the last second of his life. We would not cry
over him, we would sing, and tell him over and over how blessed we had been to have him in
our lives. We would give him back to the Lord with Thanksgivings. We would have plenty of
time for tears later. We did discuss giving any of his organs to the donor program to help
another child, that's what Kaleb would have wanted we all agreed. We discussed his funeral,
that it would not be a day of mourning but a day of rejoicing for Kaleb.
We stood over him all night, we sang Amazing Grace, told him if he wanted to go to heaven
and be with Jesus that was alright and that we would meet him in the morning. We stroked his
little head and kissed him and prayed over him that Gods will be done. Up until now I was
praying God just let me keep him, I do not care if I have to push, pull or carry him. Now I
realized how selfish I had been. Kaleb had a personal relationship with the Lord. We had
borrowed him for a little while. And I was then ready to accept Gods will. Keith on the other
hand, broke down this time. We went out at 4:00 am so the nurse could work on Kaleb. She
had told us it would be about an hour before we could come back in. I never will forget the
pain in the cry of the man I love. He had been so quite that night. Now he was on my
shoulder sobbing like his heart was broken for the last time. He was trembling so he was
shaking my whole body, and he kept repeating “ I can't help him this time.” Kaleb when ever he
had been afraid or hurt would run and grab onto his Papa's legs and say "help Kaleb Pa!"
And the sad thing was we all felt that helpless. When we had all had a good cry, we had the
strength to go back in. My mother came over to me and said " Pam, Gods not going to take
Kaleb." I wanted to believe her but in my heart I felt like those were the final hours.
We went back into the I.C.U and as we turned the corner to where Kaleb was I could not
believe my eyes, Kaleb was pink! Only an hour ago he was bluish gray, now he was almost a
rose color. I looked at everyone and said "he is going to be alright!" At last we had found a
ray of hope again. God's always just in time, when you think you can not take anymore. And
that night had been the bottom for us all.
The day was no shorter, we waited all morning for Kaleb to go to surgery. The Doctor came
and talked to us at 12:45pm. The swelling and bruising that Kaleb had was a adverse reation
to the blood thinner Heparin. We were told that the only lab in the United States that tested
for this was in Wisconsin. This would take about a week to confirm. We were told he had
massive clotting in the stomach cavity. It was so bad that the blood flow had been restricted to
his left leg. That was why it had swollen so bad and turned black. We then were told that they
would air lift his blood to the lab and try and get a rush put on the test. Then he started
talking about the surgery. He explained that Kaleb was in very critical condition and he may die
on the table, we all decided that we had to at least give him this chance. With this heart
procedure he had no chance, if he survived the surgery he would have a chance. They then
took Kaleb to the operating room. By then the family was all back in the waiting area. We
prayed all day for the Lord to be with Kaleb thru this surgery. The Lord laid it on my heart to
start praying for the other little children there. So I went and prayed with a couple of mothers
for their children. God had given me a peace about Kaleb, I knew in my heart that he was
going to come out of the O.R.
It was a very long day, then at 9:00pm they called us on the waiting room phone to say that
we were to go to the I.C.U. hallway and the Dr. would be out to talk with us after he had
Kaleb back on the floor. We all gathered, this time I counted the crowd, fifteen people who
loved this child was there. From his baby brother to his great uncle. I was thankful for the
support that was being given to Kaleb.
Then I saw him, a chaplain coming down the hall. I turned to my husband and told him I could
not take much more. My heart was sinking again. Ever time we saw the chaplain before
receiving the bad news. What was it going to be now!
By the time the swinging doors opened and the Dr. came out I was ready for the worst. He
started by saying that he had taken down the heart surgery that he had done on the 9th.
Kaleb was very weak, but he had made it thru the surgery. Then he said he had gotten as
much of the clots as he could from his stomach cavity. But he still had alot of clots that he
could not get. He then said that when he got into Kalebs heart he had a clot in the artery
heading into the heart. He had been able to get that one. Then he said that Kaleb had major
problems in all areas. When I asked him what he meant, he said well " his heart, kidneys, liver,
bowels, just his whole body!"
I had been praying so hard, I knew God had touched Kaleb, I would not except that the Lord
had not touched him. I then asked him well what about his lung's, he had not mentioned his
lungs. He said "Amazingly they are better!" My response was yes you said it “ Amazingly”. And
I said thank you Lord!
Then all of the family went back to the waiting area, most everyone was leaving to go home,
so I asked them to all gather around in a circle before they left so we could thank the Lord
for keeping Kaleb safe during the surgery. We all held hands and gave thanks to the Lord.
Me and Keith made our bed for the night on a sofa in the waiting room and laid down for
what little rest we could get. I talked to the Lord most of that night. We would take turns
going to see Kaleb every hour. I felt that by day light the worst would be behind us. For
some reason, the nights were always the toughest. By morning Kaleb had regained some
strength, he was still critical, but he looked better.
From June the 24th Kaleb seemed to be getting stronger. On June the 26th, Keith had to go
back home to go to work. (We had not worked since June the 5th) I decided to go home for
the week-end and come back on Monday morning. We both needed to unwind a little. Kaleb
was getting stronger and I felt like everything would be fine until I came back.
On June the 27th the phone call came from my daughter. Kaleb had suffered a stroke. The
neurologists had said more than likely during the last heart surgery. It affected his right side. I
was so upset, I was crying and asking God how much more was he going to allow satin to do
to this child! I felt as if I was in a very bad nightmare. I a person who for years had been in
control of my life, who did not depend on anyone, was suddenly unable to make things better.
I finally accepted the stroke and told my husband that we would just work with Kaleb until we
got him back! I told him it may take us a long time but we would not stop until Kaleb was
back.
The next morning I went back to Charleston to be with Kaleb. By now they were letting him
wake up. He was not being as heavily sedated. When I went to his bed his little eyes looked
into mine, he looked so afraid. He began to cry, all I could do was put my face to his and
hum to him, he went back to sleep and I left the room to be alone for a moment. I cried out
to the Lord and begged him to please take the fear from this child. I could not take him
crying like his little heart was broken. Then I thanked him for keeping Kaleb safe. I knew that
when the Lord said “that's enough” that satin would not be able to attack Kaleb again. I prayed
for a swift end to this battle.
For the next few days Kaleb was very confused, when his eyes would open he would cry. It
would take a long time to sing him back to sleep. Then on July the 3rd Kaleb opened his
eyes and smiled, his great-uncle Phil had came to visit. Phil had started going to church and
had gotten saved. He became a great prayer warrior. He had stood with me in believing that
Kaleb would go home from the hospital.
July the 12th was the best day Kaleb had had since we checked him in the hospital in June.
We could hold his attention for about thirty minutes before he would start to cry. We would
then sing him to sleep and wait on him to wake up again. When he would wake up he knew
us and we would read to him and sing and play peek a boo with him until he would become
confused again. That night during shift change we waited. When the time came that we could
be with Kaleb, they told us it would be about fifteen minutes. Then when they allowed us to go
back, Kaleb was being put back to bed. I was shocked, we had been told we could not hold
this child because of the danger of a clot dislodging. I asked the lady where he had been and
she said she had taken Kaleb down to the play room and exercised the upper half of his
body. I asked her who had approved that, she just said he had been approved for therapy. I
assumed that it must have been an indication that Kaleb was improving faster than we had
expected.
We spent time again playing with him and again waited until he was ready to go back to
sleep. When he began to cry we hushed him off to sleep and left the hospital about midnight.
When we were back at the Ronald McDonald house me and my husband had spent the next
hour or so talking about the progress that we could see in Kaleb. At around two in the
morning we called and checked on Kaleb and then turned in for the night. I could not go to
sleep I had the need to pray for Kaleb, for some reason I started praying for protection. Then
at 3:15am the phone began to ring... I awoke Keith and he answered, he gave the phone to
Angel. I knew already in my heart that something once again was very wrong, I had my shoes
on by the time she hung up the phone. Then she said something bad had happened to
Kaleb, that they were working on him and that we would be told shortly. I do not remember
anything about our dash to the hospital, I came back to my self when we were getting on the
elevator. It felt like an eternity before those doors opened on the floor where Kaleb was at. As
we headed from the elevators the nurse met us in the hallway. She was shaking and crying
and saying I am so sorry over and over. I finally got her to start telling us what happened. Her
name was Randie, she had been one of Kalebs nurses when he was five days old, she had
grown to love Kaleb over the years. She told us she was going to take us to a room to await
word from the Dr.s. When she got us to the room she said that another nurse was working
with Kaleb that night. That she was working in the adult I.C.U. that night. And that she had
seen them wheeling Kaleb thru, on the way to the cat scan. That's when she called us. They
had told her that Kaleb had suddenly sat up in bed, having a whole body spasm. That then
the nurse realized that something had gone wrong. Then I looked up and saw the Chaplain
coming in the room, I looked at my daughter and said "Well, praise the Lord, this means that
nothing else is going to happen to Kaleb!" By now all three of them was looking at me like I
was crazy, here we were awaiting word on whether Kaleb was even alive and I was praising
the Lord. Then I explained that this was the seventh time the Chaplain had been sent to us,
and that is God's number! In my heart I knew that we were going to win the battle. Then
about six O'clock the doctor came to tell us that Kaleb had a massive stroke. He had what
they described as a star burst of blood clots hitting the brain on both sides. He explained that
from the looks of the first test, it had done major damage. And that the next 72 hours if he
made it would tell. He explained that had we as adults been walking around and had the same
stroke we would have been dead before we hit the floor. He said they would do tests on
Kaleb through out the day but it may be a couple of days before they could tell us exactly
how he had been affected. We again began the wait. I prayed over and over for God to touch
that little brain, to repair the damage. By 9:00 am that morning the old flesh had came in, I
told my husband and daughter that I was going to the hospital administrator, I had alot of
questions that I needed to be answered. I was not going to wait until Kaleb was gone and
wonder for the rest of my life! Once in the office, I told them that I demanded a meeting
ASAP with nurse managers, doctors and anyone else who had over seen Kalebs care. I was
told that it would be afternoon before such a meeting could be arranged. I told them I would
be there, I had no where else to go, Kaleb now responded to nothing. He was like a dead
child laying there. I felt as if my world had ended that morning, I was angry with everyone, I
was mad at myself for letting Kaleb come here, God had tried to warn me. Now I had truly
lost my Kaleb! Why had God let this happen, I had been faithful, or had I? I had been telling
God since June the 9th that I would take Kaleb anyway I could get him. I had prayed over
and over that if God would let him live that I would except him in any condition. What had I
done? I had asked the Lord to try me! I had opened the door to all of this. Like satan had
done when Job was so faithful he had gotten permission from the Lord to test what I was
praying. Suddenly I remembered that I had told the Lord that no matter what happened with
Kaleb I was going to serve him. And I could just hear satin in his pettion to the Lord, "See if
she will serve you now!" I had to once again get off by myself and ask the Lord to forgive
me for being angry, I thanked him for all the blessings he had given to me, I prayed for Kaleb
and then said Father your will be done, I don't care what the out come of this situation I am
going to serve you! I asked him to take the pain, anger and to give me peace. I asked him
to use me to draw people to him. I felt better in an instant. I had my assurance back. I knew
who was in control, not me, not satin but an awesome God, the creator of everything. The
man who held it all in the palm of his hand. I knew he was with me. I knew that I could face
whatever would come. Later that afternoon I had my meeting with the staff, everyone except
Kalebs heart surgeon. The following is a list of question I asked that day. If I had not prayed
and received that peace, there's no telling how that meeting would have ended. Because I
demanded that as soon as Kaleb was stabilized I wanted him out of Charleston. I had lost
trust. Everything that could have went wrong had.
1. For what reason was the heart procedure changed when Kaleb had the surgery on June
9th? (A different procedure had been performed that day than the one we were told)
2. Why was the take down procedure delayed for two weeks?
3. Why did they wait two days after the bruising and swelling was found that Kaleb was
checked for blood clots?
4. If it is known that a heparin reation can continue to clot the blood why has Kaleb been
taken off the other blood thinner? (Orgaran - before having a INR >2.0, Kaleb’s was 1.76 the
day it was discontinued) 5. What extent of brain damage is
there believed to be?
6. What in the medical opinion should we be concerned with at this point?
7. Who approved Kaleb being taken down to work the upper part of his body the night before?
If we could not even hold him why was that acceptable? (We had been told it would be to
risky to take him down for a MRI, they wanted to be sure the clots were not going to dislodge)
All of my question were unanswered because they had to be answered by Kalebs primary
(admitting) Dr. Who was his surgeon. The only one not there. So before ending our meeting I
left word that I would be at the hospital again when he came out of surgery. And that I
demanded answers that day! Later that night when he came up from surgery I was waiting
outside the I.C.U. for him. I pulled the list of questions from my pocket and started asking. I
was satisfied with all his answers. When I got to the one about Kaleb being taken and
exercised, he stopped me, he said that he should have never been taken out of bed and that
he would find out who had ok'ed it. We never found out who or why he was taken from bed
but at this point what purpose would it have served anyway. I never asked him about it again.
I knew that my attention was to stay in prayer for Kaleb, not getting angry over something that
was already done.
July the 14th was when word started coming in on the first test. Kaleb had a massive stroke
and that it was unclear how much damage had occurred. They kept saying extremely
damaged. They did another M.R.I. that day and made an appointment at 2:00 the 15th to let
us know the results. It broke my heart to look at Kaleb, I still kissed his little nose, but inside
my heart was broken. He would not move when they came by in the morning to test him for
response. They had to put him on a special mattress to keep him warm, he could not even
control his temperature. His little head swelled to twice its size, they had to cover his eyes
because they swelled so big his eyes would not shut. He had a large knot at the base of the
neck, they said it appeared to be from the brain stem starting to detach its self from the brain.
(Thank God they were wrong) The whole situation looked grim, but I did not look at the bad, I
kept looking at Kaleb, I knew I could not give up on God or Kaleb. God had kept him, I knew
he still was. July the 15th was my daughters birthday, we all waited on the meeting about
Kaleb. I prayed so hard for everything to be alright and if not to please give me the strength
to stand. We were visiting with Kaleb when the nurse came and told us the doctors were
ready to talk with us.
CHAPTER NINE
BRAIN DEAD ... MAN GAVE US “ NO “ HOPE
They took us to a break room in the back of the I.C.U., when the doctors arrived you could
tell by the faces this would not be good news. They began by saying the whole brain had
been destroyed, the only reason they could not sign the death certificate was because the
heart was still beating on its on. But that as the swelling continued to go down that the brain
stem would finish detaching itself from the brain and that when this occurred that his heart
would stop. His heart doctor spoke up at this point and said that the heart had been
weakened by the stroke so it may stop before this happened. Then the words came that made
me cold to the bone, they explained that he was going to die anyway so we needed to make
a decision on how to go ahead and let him die. They said we had a couple of options, we
could take him off of the breathing machine and he would die, or we could no code him and
they would keep him comfortable but not render any medical treatment, or we could stop his
feeds and he would starve to death. I was in shock, I was looking at their faces, they were
talking about "killing" a child and showing no remorse. My daughter decided to no code him
until Saturday, and then they could cut the machine off! So the 18th day of July it was
suppose to end. I left that meeting numb, I walked my daughter back to the room everyone we
passed going back could tell that something was very wrong. I got Angel back into bed, she
was crying and I went to the upstairs porch to speak with my heavenly Father, I was so cold
in the summer heat. Once alone I broke down and was begging God to help me. To please
take this pain from me, to please turn things around for Kaleb. I was about calmed down when
the mail arrived that day. The girl that worked at the house brought me an envelope filled with
cards from family members for Kaleb. God had waited to let them be delivered because he
knew I would need them at that moment. As soon as I opened the cards I made up my mind
to pull myself together and go visit with Kaleb and read him his cards and hang them on his
wall. It was not over until the Lord said it was over and satin was not winning. I went back
with an assurance again to see Kaleb! God was my strength and refuge in time of need, not
medical personal. I went back to Kaleb and the nurses looked at me with such pity on their
faces, I became even more determined to be strong. I had witnessed to about every nurse
and doctor in this place, if I lose it now they won't see God in me. They would assume that it
was all real but where is "her God" now.
I went into Kalebs room and began talking to him as if he were alright. I read him all his new
cards and told him how he was a very special little boy that so many people loved. Then I
began to hang his cards on the wall with the rest. Then a nurse came in the room to tell me
how very sorry she was. She had tears in her eyes and I told her not to cry that God still
had control of Kaleb and that I was sure his will would be done. I told how grateful I was to
have been blessed by God with Kaleb. And she said you are so strong, I came in here to
comfort you and your comforting me! I told her I was human, I am not strong, only by the
grace of God do I appear to be in control. I admitted to her that I was afraid of losing Kaleb
but to serve the Lord I have to trust in him, even in the mist of this tragedy. She left the
room shaking her head. I began to rub Kaleb down in lotion, he had alot of muscle spasms
(posturing) from the brain damage. I stayed with Kaleb for hours singing and praying for him.
He still was showing no response. I went back over and told Angel she needed to get up and
go see Kaleb, she told me she was not going back to the hospital that day. I then had to
inform everyone what the doctor had said. I told them that Angel was going to let them cut off
the machines on that Saturday. I could hear myself saying the words but I just did not feel it. I
began praying for him to let Kaleb show his mother in some way that this was not suppose to
happen. For God to give her a sign. I knew I did not have the energy to fight her on this.
Most of the family had already given up on Kaleb. So I knew I did not have much support in
my desires to let him live.
Then I over heard my daughter telling people if they wanted to see Kaleb they had better
come down because Saturday the doctor was taking him off the machine. My heart was being
torn from my body, the child that Keith and I had wrapped our world around. He was the joy
of our lives. Now it was like the count down to his death. I had to spend as much time with
him as possible. I had to talk with him about heaven and Jesus. I did not want him to be
afraid if he were to be taken. Then I started to remember that people who have near death
experience talk of a loved one coming to get them. Who would come for Kaleb, no one that
he knew had ever passed away! The Lord gave me a peace about that also. I now believe
that a very beautiful Angel would have helped Kaleb to the other side. I have felt the presence
of Angels around him since he was a baby. I know in my heart that Jesus would have held
him in his arms.
Since Kaleb was a no code now I felt I needed to be by his side. I did not just want a
phone call if he was leaving. I was hoping and praying for a miracle. And I was not going to
give up until the Lord took him. I was weak from fasting, lack of sleep and the preasure that I
had been under for weeks. I felt as if the world had pushed me to the side and left me in
the twilight zone. Now I understand that the Lord put me in a place to prepare me for the
battle that would be ahead. He was training me, to stand, to believe in him in all situations. I
was worn, but he was making me strong.
One of the mothers of another heart baby had became close to us during our ordeal, her
name was Sonja. Her son was named Caleb, he was in very critical condition also. We prayed
together, prayed for each others babies and helped each other make it through the bad days.
She had her church praying also for our Kaleb. I think about her family alot now. She was
such a tender hearted person. She was in the battle of her life also and yet she stood with
us and watched over our child also. If for some reason they would not let us back to see
Kaleb, Sonja would come out from visiting her son and tell us what she had observed about
Kaleb. I asked about her son on a recent visit to the doctor and was told that her Caleb is
doing so well. They said he was a beautiful blonde haired little boy. I thanked God for that
praise report on Caleb Kennedy. Both of these little boys had family praying for a miracle. And
the Lord has cared for both of them. These little boys were medically given no hope, and
they both went home.
That Thursday was a very hard day. I still visited with Kaleb and went on with my prayers for
a miracle. I was still waiting and believing in God for a sign to be given to my daughter to
not allow the machines to be cut off. I lost all track of time that day. I had been given the
opinion of many nurses that day about letting Kaleb go. I was told if I loved him I would want
him to go to heaven. I responded that I did want Kaleb to go to heaven but only if God was
the one who took him! Then I was informed that Kaleb could not die on the machines. I stood
my ground there also, I told them that I had seen God take alot of children right there in that
I.C.U. in the last three years. And that when God gets ready for Kaleb he would take him no
matter what machine they put him on.
I was so tired of defending my Father. I knew that somewhere in their hearts they had to know
who was really in charge. One nurse came in and made the comment that "he is going to die
anyway!" and my anger came out. I told her that they would not use the word dead or die in
Kalebs room, that he would not hear that spoken over him. I would not allow that to be
spoken into existence. She informed me that she did not candy coat a medical situation. And
that I should understand how serious Kalebs brain damage was. I told her that I did understand
what they were saying, but I knew the man who made that brain and he was able to turn this
around. She shook her head and started for the door. As she was leaving I asked her to
please respect my beliefs in the future and not use those words in that room. She never
responded, she just left the room. By now everyone was looking at me with concern. I now
know that they were concerned about my mental stability. But I was stable in the Lord. During
shift change that evening I went and talked to my daughter. I told her how I had been praying
for God to give her a sign. And I then told her that I knew in my heart that she was going
to receive it.
After shift change, I went back to Kaleb's side. I read him a story and then talked to him
about fun things we had done together. I told him again how much joy he had brought into my
life. I told him I was a better person because of him and his love for life. I sat by his bed just
looking at him. I asked myself over and over if I was wrong to be holding on so tight to this
little boy, was I being selfish to want him to stay ? But I knew in my heart that it was not time,
I prayed for God to show me if I was suppose to let Kaleb go.
Around 1:00 am the Dr. came into the room, I was rubbing Kaleb with lotion and singing to
him. The Dr. did not speak a word at first, I told Kaleb that Dr. Bradley was there to see him.
When I looked up the Dr. looked from Kaleb to me and with tear filled eyes said " I'm so sorry"
I was shocked to see him so upset. He in the last few weeks had shown little emotion. Then
suddenly a peace came over me, the Lord told me to tell him I did not blame him. But at first
I was hesitant. I DID blame him... or was I just hurting inside? I felt the tears well up in my
eyes. I silently asked God to forgive me. I looked back at the Dr. who by now had started
looking toward the t.v., I took a deep breath and then began saying what the Lord had told
me to say. I told him that I could not blame him, that if I started blaming people I would
become a very bitter person and that I would not be able to take care of Kaleb. I told him that
I believe that before we are placed on this earth that God knows all things that we will go
through. And I know that this only happened to Kaleb because God had allowed it to. And
that I had seen to many children having the same procedure that had been fine. And that if he
blamed himself he would not be able to help other families because this would destroy him. I
told him that when I left Charleston that I would need all my strength to care for this child that
we cherished. And that we either live our lives with hope or in desperation, and I refuse to live
it as a desperate person. I would care for Kaleb and wait on the Lord to have his will. I also
told him of how Kaleb loved life and people, and if I become angry and bitter that would not
be right if I truly love Kaleb. I have to do it for him. I owe Kaleb that. I told him that as soon
as Kaleb was able I wanted to take him home, if he is going to die I want him at home so we
can hold him, I had not held this child since June the 9th I explained. I want him with his
family and to know how loved he is. I want to crawl in the bed with him and hold him and
smell his fragrance, I want to make him feel secure again if only for a little while. I want God
to heal him I cried, I want him to wrap his little arms around my neck and say "My love you,
Nena."
By now the Dr. and I both were in tears. I told him that God was still in charge and that we
would have to see what his business was. I smiled at him then and asked him don't you have
children and he answered yes and I told him to go home then and hug them real tight, thank
God for what you have and spend more time with them cause the sad fact is if I could go
back and give back twice the amount of money back to have spent just one more week with
Kaleb instead of working I would do it in a second. I told him he was a great Dr. but that he
needed to remember that God was still in control of life and death. He rubbed Kaleb's arm
and told me he would check on us later. I went back to talking to Kaleb. I knew in my heart
that Kaleb would have approved of what I had said to the Dr. But more important God did also.
About then was when I remembered what day it was. It was my birthday. At first I thought well
is this not going to be a great day ? Then I pushed away the thought of the bad and told
Kaleb that it was my birthday and that we would have to do something really special in the
morning . I then kissed him and went to rest for a few hours.
When I was back at the room I prayed for God to give me the answer, to let me know that I
was doing the right thing. When I finished praying I just opened the bible and started reading...
Luke chap. 8 v. 5 But that on the good ground are they, which in an honest and good heart,
having heard the word, keep it, and bring forth fruit with patience. Now my heart leaped in my
chest. I knew, I knew that I was standing where God wanted me to be. I thanked him and
knew in my heart that Kaleb was going to show a sign of improvement. As I was laying in the
dark there praising God, all of a sudden it was like I had drifted off to sleep, but I was still
awake. I could still hear Ray Boltz singing the Anchor holds {I listened to that all the time when
things looked the worst} I can not describe the way I felt, but I was up above thousands of
people and then I looked down and saw Kaleb in front of the crowd. I knew at that moment
that Kaleb was going to be a strong testimony of what the Lord had done during this time of
hopelessness. I now knew in my heart that I was not being selfish, nor was I fixing to have a
nervous break down. The devil was using this situation to make me doubt what my Lord could
or would do. I began to worship the Lord even more, I thanked him for showing me the "rest
of this story." I had a restfilled night for the first night in a long time.
When I got up that morning I did not feel the urge to rush to the hospital, I had a peace
about things then. I knew that God had shown me that no matter what it looked like he was
taking care of Kaleb. I started playing my praise music and fellowshiping with my King. I have
thanked him everyday since then for this valley . I am honored that he loves me so much to
place me here to learn to stand on my feet and stand firm. I did not go to the hospital that
day until afternoon.
That day was my birthday, I went to the hospital and told Kaleb what a great day it was I told
him that Jesus was going to make him better, something I still tell him everyday. I kept saying
that no matter what the devil throws at us Gods already won the battle. We are going home
Kaleb, together I whispered. My daughter came to see Kaleb later that day, she was sitting on
one side of the bed and I was on the other side rubbing Kaleb's little arms and legs. I started
telling her again how God is going to show you he is still in charge. Then I leaned over and
told Kaleb that he had to show his moma that he was going to be alright. I just kept rubbing
him and praying silently to the Lord. The devil kept bringing before me the fact that tomorrow
she's going to let them cut off the machines. And I just kept rebuking him from this situation
and from our lives. Angel had layed her head on the bed by Kaleb's arm, still holding his
hand. Suddenly she looked up at me with tears in her eyes and said "Moma, he just squeezed
my finger," I said oh he did not! She said yes he did moma. I went to the foot of the bed
and lifted up his foot and told her that they had just ran the probe up his foot and he still
had not responded. As I was speaking I took my nail and went up his little foot but praise
God this time he curled his toes upward. I started crying and took the other foot and received
the same response. I told Angel through tears to go get the nurse, I said I knew God was
going to give you a sign, you can not disconnect the machines now. When she left the room I
realized that I was as shocked as she was. This was also a test on my faith. When the nurse
came into the room and saw what Kaleb was doing she said well that's not a good sign, he
should curl the toes downward not up. That's a sign of extreme brain damage. I said well I
must have brain damage too because I have always curled my toes up when someone tickles
my foot. And I told her this was the sign from God I had asked for. I was like a child just
filled to the brim with happiness. And I am going to tell you, that was the greatest birthday
present I have ever received. I knew Kaleb was still in there! I bet I kissed him a hundred
times before shift change that day. I was telling him "See Kaleb, Nena told you that you would
be alright. I told you that Jesus was taking care of you!" When it came time to leave my walk
was even lighter. I felt like the new day had began. I was so thankful that I could not stop
singing and humming Thank You, Lord.
But later that night, the family started arriving in for the next day. I know it was wrong but I
am human, I kept thinking about the fact that these people only knew Kaleb from birthdays,
Christmas and a few other visits a year. They did not know his favorite color was red, they did
not hear him tell the three pig story with all the excitement in his tender voice. They did not
know that when Papa, Nena and Kaleb went to the waffle house on Sat. mornings that he had
to have butter, waffle syrup and strawberry jelly on his waffles or that he had to have coffee
made just like mine in a real coffee cup to drink. They had not wrapped their world around
this child yet they were ready to let him go. ( Do not get me wrong, I know everyone loved
Kaleb!, it was just at that moment I did not want to hear what they thought was best.) I
became so angry listening to everyone talk about what was best for Kaleb and "us". I finally
had the opportunity late that Friday night to speak with Angel alone, I asked what she was
planning on doing in the morning? I was shocked when she said that everyone was already
here and Kaleb will never be Kaleb again. She said everyone was telling her how much care
he would need if he lived. And he would be a vegetable from now on and that was not fair to
Kaleb. Then with tears streaming down my face I told her that if she went thru with cutting off
the machine the next day that I would not be there to watch. I told her that it would take me
a very long time to forgive her if I ever could. She knew how that child loved me and his
Papa and she knew how we loved by him. Then she said that she had another child to raise
too. And she loved Kaleb but she did not think that she could take care of him. Then I told
her that me and his Papa would take care of him, she could come and see him anytime, and
that I would never put any demands on her. I loved her she was my child but I could not
approve of what she was going to do.
I prayed for God to please deal with her and show her the right thing to do.
Day light came too soon the next morning. I had cried and prayed until I felt numb. I was so
very tired. But I knew that I had to remain faithful. My husband came in early that morning, he
had worked all night then driven the three and a half hours to get there. I was glad that his
sister Lisa and her husband David had followed him down the highway that morning. He like
me let Angel know that what she was thinking about doing was not pleasing to him either.
Angel agreed to not turn off the machines, Keith and I would take care of him so that she
could raise Joshua. I knew that day that this battle would be long and very
hard. Soon we were on the walk across the street to tell the
Doctors to take the no code off of Kaleb. One of the nurses came into the room, Angel took
him to the side to let him know that she had decided to let Kaleb live. I was talking to my
sister-n-law, when he left the room I noticed Angel was crying. I asked her what was wrong?
She told me that he had said she was making a big mistake, that "He is going to die
anyway." When I came to myself I was standing at the nurses station. I told him to not give
us his opinions when told of our wishes. And to never speak the word die or dying in my
grandsons room again. He said he was sorry but he had read Kalebs test results, "he is brain
dead" and all your family is doing is prolonging his death. I told him that we did not control
life or death, only God knows when any of us are going to die. But after everything we had
been through, we did not need everyone trying to go against our religious beliefs. We had
came to Charleston with a highly intelligent, happy little boy and look where we were now. All
because we put our trust in a man. Everyone was upset that Angel had changed her mind,
they also voiced their concerns over the quality of life he would have. I have to say that both
my sons and my daughter-n-law accepted that Kaleb should go home even if to die. That day
there was no joy or happiness over getting my way, I knew that there were no real winners or
losers we all loved Kaleb. We just had different opinions on what was the best thing for him
now.
CHAPTER TEN
WALKING BY FAITH...
That next day I decided to go home with my husband to make plans on how to get Kaleb
home, where to take him to, and to prepare myself for what I knew would be the hardest job
of my life. I prayed and asked God to give me the strength it was going to take to stand for
what I believed was right. I asked him daily to comfort me and lead my steps and my tongue.
It was the hardest thing for me to get control of. When I would become angry I wanted to
blow off my anger on everyone. I gave the Lord my rage over the circumstance, I started to
listen more than talk. I let my spirit lead my responses. It was very hard, some times I wanted
to scream "No, you don't understand and you can not imagine what I'm feeling" because I was
having feelings of hurt beyond anything I could have ever tried to prepare myself for. But I
would take a deep breath and reply with a smile, I'm just trusting God, when he is ready for
Kaleb I accept his will. I always tried to say something to give God the glory no matter how
bad it was looking. I knew in my heart that if I kept my eyes on God that Kaleb would make it
home.
II Timothy Chapter 2
Thou therefore, my son, be strong in the grace that is in Jesus Christ.
And the things that thou hast heard of me among many witnesses, the same commit thou to
faithful men, who shall be able to teach others also.
Thou therefore endure hardness, as a good soldier of Jesus Christ. We as Christians like
being in the boat until God calls us out. Alot of people look at the dark, deep water instead
of keeping our eyes on the Lord. When we face that water, we have a decision to make, we
can either keep our eyes on Jesus or we can look at what the devil has put in front of us
and just give up. I know in my heart if I had ever looked at Kaleb, and saw all the things
that the medical professionals were telling me I would have given up. But, I kept my eyes on
God. I kept repeating his word, he says he will honor his word and God does not lie. So
when they said there was no hope, I went to my Father and I let him give me strenth, faith,
and hope that I knew he alone could provide.
When you feel like it is the end theres no way out, look to the Lord, he is our problem
solver. All you have to do is have faith and hold onto his big hand when you think your
going under! Watch him move for you too.
CHAPTER
ELEVEN
COMING HOME.....
On July 31st Kaleb underwent another operation to insert a trach in his neck so he could
come home on a breathing machine and a tube was placed in his stomach for us to feed him
through.
On August 6th, Kaleb was flown from Charleston to Greenville children's hospital to get ready
to come home. We were working on getting a mobile home making it handicap accessible and
set up for Kaleb. We were told that in one month we had to have everything ready and have
passed a training program to prove we could meet all his daily needs. We would go see Kaleb
in the mornings, go through two to four hours of training and then we would come home and
my husband would sleep about two hours and have to go to work all night, while I worked in
the house preparing it.
If God had not been with us we would have never been able to meet the demands placed on
our lives. Kaleb then started to run a fever, he had a foul smell coming from around his trac
hole. After a test we were told that he had a staph infection called “Mersa” and that they
could give him ten days of strong antibiotics but it could kill Kaleb. We went for treatment. It
is under control but he will always be a carrier now. It can flare up at anytime. Just something
else to pray about!
My mother-n-law and father-n-law went out of their way to help us get a home ready for Kaleb.
We had to get an electrician in to place a new breaker in Kalebs room for his breathing
machine. Keiths father had a man from his job donate his services to meet that need. We had
to have a heating and air conditioning man come in to service the unit. We had to wash all
the walls down with a disinfectant to prevent breathing problems, we had to rip the carpet up in
Kalebs room and put down tile so he would not get a lung infection. My youngest son and his
wife purchased the new tile to replace the carpet. My oldest son bought the ceiling fan and
Winnie the Pooh decorations for the wall. My father and stepmother put up mirrored closet
doors. My husbands grandmother gave us money to help get everything ready. . My brother-n-
law came and helped widen the doors so Kalebs wheelchair could pass through. My husband ,
brother-n-law, youngest son and ex-husband built the wheelchair ramp on one of the hottest
Saturdays that August. Churches from all our family members sent all the items we needed to
take care of Kaleb. (three dozen white washcloths, white towels, white tee-shirts split up the
back for Kaleb to wear.) and the long list of things we would need daily to care for Kaleb. A
man who wanted to remain anonymous sent five sets of sheets to fit Kalebs hospital bed. In
the latest children's print. Our community as a whole helped make it possible to bring Kaleb
home. Kalebs Meme Ivey supplied him with diapers, great-aunts and uncles gave to meet his
needs. I have never seen things come together so wonderfully. God had truly blessed Kaleb
and us. If it had not been for everything that everyone did we may not have been able to
care for him. I spent the nights alone praying for God to bless our home and to touch
everyone that came into contact with Kaleb or us. I asked him to use this situation to allow us
and others to glorify him. I told him that if one soul was saved by them seeing or hearing
about Kaleb I would be able to accept what we had been through.
I had some very low points before bringing Kaleb home. The devil tried to fight me by telling me I
was wasting my time that Kaleb would not live to come home and that if he did come home the Doctors
would be right he would not live long outside the sterile environment. One night while alone I had been
listening to one of my southern gospel tapes and talking to the Lord, I had been hanging pictures of
Kaleb on his bedroom wall when all of a sudden all the pain and hurt for what I had lost came rushing in.
That was one of the first times. I yelled out at God, yes yelled. I was crying so hard I could hardly
breathe, I looked to the heavens and said "God if Kaleb does not live your going to have to help me to
over come my anger. You are what I was raised to believe in all my life and if Kaleb dies you are going to
have to help me understand why!" I now know that had God taken Kaleb he would have prepared me
before he did. So as you can see the battle has raged not only with Kaleb but with me and my husband.
On September 8th, Kaleb came home by ambulance. When I saw it pull up and I saw my husband get out
of the back, I ran to Kalebs room and started crying, this is not the way it was suppose to be. He was
suppose to come home like all the other times, better. I wiped my eyes and said I thank you anyway
Lord. I over the last three years have said that anytime things have gotten bad. Then we started the
twenty-four hour a day care of Kaleb. We have had alot of sleepless nights, days when you do not even
get to eat a meal until after midnight. I have went days without getting to take a bath. At first we had my
sister-n-law, my daughter , my husband and myself taking shifts to care for Kaleb. Then In February my
mother moved in with me to help also. And to tell you the truth I was too hard on all of them. I at first
would become angry if anyone was five minutes late with a feeding, medicine or turning him. I would
make the comment that if I had to take care of him alone everyday to do it right I was willing to do what
ever it took. I would keep him alive by myself if I had to. Well in July everyone but my husband quit
coming to help me. I would go for days with little or no sleep. I finally said it’s ok if Kaleb is a little late with
his bath that is alright. If I go to sleep and he is a little late with a meal that's ok. He was getting feed
every three hours, it was not like he was being starved. I decided that the laundry may pile up, I would
wash it when I could. And I started cleaning my house on the week-ends when my husband was off from
work. Some days we may eat soup and sandwiches, and some nights Kaleb may require less attention
and we get to unwind and spend a few moments together. I do not worry about the little things as much
anymore. Kaleb now sleeps at night from midnight until about five am. It is easier now. When I see him
smile it makes it all worth it. When he turns his head toward me when I'm talking to him to look me in the
eye, holds his head up by himself and just last night he started sucking his "binky" again. I give all the
glory to God, people say Kalebs alive because of me and my husband and he is lucky to have us. I
always tell them how wrong they are. We are lucky to have Kaleb, all we have done is continue to love
him, God has blessed the three of us with each other. We praise him for everything he does for us
everyday.
We have been blessed to have had so many people of God praying daily for Kaleb and us, all the
churches, the people on my mother-n-laws mail route, Roosevelt Kimbell, Charles Hostetler, Also our
friend who has been there since Kaleb was born who has stood with us believing for a miracle Martha
Smith a.k.a. Ms.Martha, I love you like a sister. You have always been there for me, just in time alot of
times. Ms. Martha went to be with Jesus 7-06. Thanks also to Pastor Richard and his church for their
prayers. To Dixie at Eckerds and everyone there that calls Kaleb the "Eckerd Baby". Thanks to the
prayer group that came shortly after we brought Kaleb home from the hospital from Restoration Church,
Arthor,Betty,Tammy,Mike,Teresa,Y'all showed Kaleb such love that night. Each of you taking turns
holding and rocking him while you sang to him. Most people who see a child like Kaleb will then back off
but the love you showed was so appreciated.
And Kalebs family who has loved him. His mother, brother, sister, stepfather, Papa Ken, Memaw Brenda,
Papa Mac and Granny Joyce,Granny Terri,Aunt Ashleigh, Aunt Jen, Meme Ivey, Aunt Linda, Aunt
Deana, Nanny and Papa Buddy, Aunt Lisa and Uncle David, Granny Garrett, Angie and David Bishop,
Brian Garrett, The Lyman Post Office. And to my mother who has always been here for me, even when I
was not so nice. I love you. Chris and Angie who have came every Sunday after church to help bathe
Kaleb in the tub. And also Uncle Chris for all the hair cuts. To my brother David I love you too, brother.
Also to my father and stepmother, for everything yall have done over the years to help us care for Kaleb.
The handicapped van that gave me and Kaleb a way to go again. And the opportunity to have Kaleb in a
home with room to meet his needs. That now sits less than a mile from his resting place. I love you.
And last to my husband, where do you find the words to thank someone for all you have done. For
putting up with me on the bad days, for loving Kaleb the way you always have, for giving up life as we
knew it to work and sit home to care for Kaleb. For going hungry when Kaleb needed something extra
that week. For all the sleepless days and nights, for holding me when I felt like I could not go on. I love
you and Thank God that he put you and your family in my life.
Also it is only fair to Thank everyone at G&P Trucking, TNT Trucking and Poly-Deck for being so
understanding when Keith had to miss work to be with Kaleb.
And to my heavenly Father I give you all the honor and praise. I do thank you for this valley, I love you
Lord. I pray that this will go forth and be used to glorify you. And to you where ever you are today, if the
battle in your life is raging, if man tells you there is no hope, if your at the end of your rope hold on to the
Lord. Call on his name and watch your mountain move. I pray today for you to have a peace come over
you right now in the name of Jesus. I pray for God to bless and meet all your needs. And satin I bind you
and rebuke you and cast you away from Gods property in the name of Jesus. I plead the blood of Jesus
Christ our Savior over this life.Amen.
To Phil, we miss you and think of you often. Knowing you, made us all better people. See you again one
day. Rest now on your mountain....Born:7-4-63, Called Home: 8-27-99 “Ain’t Nothing But a Thang!”
Your way of telling people not to worry!
I also want to Thank God for those that were a part of Kalebs care in the end. Barbara Roehl PT, Kalebs
favorite person. Linda Remick OT, who made it possible for Kaleb to color again. And our dear Natalia
Mushini RN, who Monday-Friday rendered care with love and compassion. The three of you will forever
remain a part of me. Jack and Joey Stribbling. Pastor Bobby Inman, Thanks to these and all of you!
December 5th, 2005 Update:
Kaleb recieved his MIRACLE as an early CHRISTmas present. He has now went to “see Jesus”. Kaleb
passed peacefully @ 10:07am. We miss him more than words can express. I tell him everyday “ I will
meet you in the morning, Baby”. I am now longing for home even more. Below is what we had in Kaleb’s
Notice.
MY FIRST CHRISTMAS IN HEAVEN...
I see the countless Christmas Trees, around the world below.
The tiny lights like heavens stars, reflecting on the snow.
The sight is so spectacular, please wipe away that tear.
For I am spending Christmas, with Jesus Christ this year!
I hear the many Christmas songs, the people hold so dear.
But the sounds of music can’t compare, with the Christmas Choir up here.
I have no words to tell you, the joy their voices bring.
For it is beyond description, to hear the Angels sing.
I know how much you miss me; I see the pain inside your heart.
But I am not so far away, we really aren’t apart.
So be happy for me dear one, you know I hold you dear.
And be glad I’m spending Christmas, with Jesus Christ this year.
I send you each a special gift, from my Heavenly home above...
I send you each the memory of my undying love.
After all love is the gift more precious than pure love.
It was always most important, in the stories Jesus told!
Please, love and keep each other, as my father says to do.
For I can’t count the blessing or love he has for you.
So have a Merry Christmas and wipe away that tear...
Remember I’m spending Christmas with Jesus Christ this year!
This completes this story, the one of an Amazing little boy.
One that Jesus loved so very much, he came and took him home.
Kaleb did serve “His” purpose by coming to this place. My life will never be the same. Because God
allowed me to hold one of his Angels, one he chose to come here and spread his unconditional love. I
Thank God everyday for the honor of having Kaleb for almost eleven years. I did see so many amazing
miracles with our Kaleb. God always had his will. As of this writing I must say I still at times wonder “why”
this was Gods will, as Kaleb fought so hard to live. He suffered the pain that I should have endured,
cause he was but an innocent child. But I know that all things work for the good. This is what the Bible
says about Gods plan. I know that I will see Kaleb one day very soon... that brings me comfort. When this
life passes away and I finish this race, I will look upon Gods face and after seeing Jesus, my Kaleb I will
again embrace!
Pamela Gregg
Kaleb’s Nena
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