Patty, come sit down, we need to talk...
Exhausted from being up for the last 24 hours with my son
throwing up twice as much drink as I gave him,
I dragged myself over and plopped on my couch. I couldn't
understand what was going on... it had been such a nightmare
getting the medicine to stop the vomiting from the hospice
pharmacy... and when it finally came the nurse wasn't going to use it!
She told me there wasn't a reason to. NO... she had to rub
it onto his wrist. It was supposed to help keep him alive!
For the last five months I had done everything in my power to keep him alive.
It was just a week before that I felt God let me know he would live,
God had given me a peace after I finally let Michael go,
that he wasn't going to take him home, that Michael would live a long life.
I felt so sure of that after I had given my son back to Jesus.
"It's ok Michael, you can go see Jesus now, I know your suffering so much."
He shook his head "Your not ok mom, I'm worried about you."
Oh, my precious son... all his life he had worried about me,
He was 4 years old when I was 6 months pregnant.
I had stopped in at a friend's garage sale on the army base and
while I was looking around he and Charity, his older sister by a year,
went to play on the park equipment behind the house. I heard a short scream,
but one I new so well from the other times he had been hurt badly.
As I ran to the playground, I saw Michael on the ground in front of
a large metal slide. He wasn't crying, (Michael so rarely cried),
but as he sat up blood gushed from a head wound. He looked like
something from a horror movie. I went hysterical; Michael looks
at me and says, "Mommy are you ok?" This was Michael, all his
short life he "took" care of others, hardly ever caring about himself.
"You need to go set by your son, he has a short time left on this earth."
NO, rang through my head it can't be so! I curled up in a fetal position
as I sat next to two hospice nurses and a friend from church who had come
over to sit with Michael so I could get rest. Not my wonderful son,
he was so beautiful to me, why would God take him? God was supposed
to leave him here so he could continue his ministry here on earth.
He was supposed to be a youth minister working at the Youth Front camps
or a great chef showing the world the way to healthy but tasty foods.
He would be such an asset to this world. God could shine through him;
God could use him mightily.
For the next 12 hours I hardly left the side of my son's hospital
bed setup in our front room, rubbing his arm, telling him I loved
him so very much, smiling, reading out of the Bible, wetting his lips
with a sponge dipped in water. It was the hardest thing I have ever
done in my life. I watched my precious first born son slowly die, never
stopping my smile, lest he look up and see his mother sad on the last day of his life.
I'm here, I'm here....
Michael was screaming, I picked him up, he screamed, so I put him down, he screamed more.
Calling the doctor I took him in again, it was the third time this week. My dear little baby boy,
he only weighed 10 pounds and was 8 months old. he couldn't sit up by himself. The doctor at
Red Bridge clinic just told me that he needed more antibiotics. That was all he did,
give him antibiotics.
"He just has inner ear infections." "I think he needs tubes in his ears,"
"NO,"
the doctor told me, "I don't like to do that..."
My son was in so much pain he was only 3 pounds heavier than he was when he was born.
He cried every night! There was something seriously wrong with him!
Why couldn't the doctor see?
I came home exasperated, picked up a phonebook and flipped it open to ear doctors.
Closed my eyes and picked one. Called and got Michael in their next open appointment a month
later. God is so good, he gave me the best ear, nose, and throat doctor in the Kansas City aria.
Michael got his tonsils and adenoids pulled and (I am telling you the truth) the next day he sat up
by himself.
I'm here, I'm here....
but this time I can't help you. You are so little, I bet you don't weigh 60 pounds.
I can't stop you throwing up, I can't stop you dying. All the doctors in KC can't help you.
I can just give you more morphine, and wet your lips with water. The hospice people told me to
stop giving you liquids because you just throw it up, along with more of your precious body fluids.
Now I can't even see your beautiful blue eyes, all I see are the whites, I wish you could talk to me.
I want to hear your voice again. I know you hear me still. I love you, seems to be all I can say.
Everyone has left now, I slept for the first time in two days while my good friend and neighbor sat by you from 4am to 6am. But I am back by your side now, You recognized my voice... your eyebrows lifted.. you tried to speak. I took up the sponge and wet your lips.. I had forgot to tell her to do this.. your lips are so chapped and dry. You responded to it in just the smallest way, but the only way you could. Mitch has gone into another room... we are alone, you know this somehow...You make noises to get my attention...I look and see you open your eyes and try to raise your head... you are looking right in my eyes and you breath a loud breath... it is your last. You do not shut your eyes... they are still looking right into my eyes as I shout a cry of anguish into Heaven... my son is gone.
This is not the end of his story but the beginning, Michael was an incredible young man.
If you knew him I would love to get some stories of him from you. From dancing on the table tops of DownStage Cafe before Christian concerts... to skits preformed about him... to blessings in your life... from the comical to the serious. Please e-mail me these storys.
My Child has Neurofibromatosis