Face the Pain

When you’re sitting in a small, white room where the couch is too small and there aren’t enough chairs, faith takes on a whole new meaning. Despite the strife looming in that room, I could feel faith. Faith has a feeling.  I could touch it.  Faith had His arms wrapped around me.  The doctor told us that 35% of these babies don’t make it.  We were going with the 65%!  I tearfully said, “Doc, we believe in a higher being.  My son’s in there fighting. If he’s fighting, then we’re out here fighting for him.”

That night Lisa and I sat with William. He held our hands.  He opened his eyes and looked at us. Not sure who’s eyes were wider ours or William’s.  Has faith ever widened your eyes?

Just when I thought there was nothing else the doctor could say to me that would not offend or upset me, he asked, “What do you want to do?”  To me, that question was cruel on many levels.  Maybe it was not the question. Maybe it was how he prefaced it….

“Sure, your son made it this far and I did not expect him to be here this morning, but now he has a grade IV brain bleed in both sides of his brain.”  (Grade IV brain bleed is the worst possible….cerebral palsy is certain) The doctor continued on, “On top of this he, is on 3 blood pressure medications, has a collapsed lung, has blood coming out of his stomach, has acid in his blood, has jaundice, and is unable to breathe on his own.  Your son is likely to be in a wheelchair for the rest of his life. He will probably be blind, will have to be fed and will not be able to care for himself. That is IF he makes it.  I have seen a number of these cases.  35% of these babies do not make it.  Now we are talking quality of life.  Is this the life you want for your son? WHAT DO YOU WANT TO DO?” (He walked out to give us time to think about it)

This was it.  This was the day.  This was THE worst day of my life.  That room!  I hated that room!  That room is where we had the prenatal consult.  In the prenatal consult we met to discuss my son’s fate; the doctor, the head nurse, my mom, dad, Lisa, and me.  Life changing.  Not an easy topic.  In spite of the group setting I had a very lonely feeling.  There is something about a person wearing a long white (pure white) doctor’s coat with a Dr. So and So monogrammed on their chest.  The words that came out of his mouth were real!  They were scathing.  I mean they felt alive.  Like they had more life in them than William!  There was a part of me that thought, “What if he’s right?”  I actually visualized my son slumped over in a wheelchair, blind while I fed him. Yet, I could not give up on my son. I’m his father.  I’m his dad.  I refused!

Despite William’s uphill battle, life went on.  My day started at 430am and still does.  I opened our gym before 6am, went to visit with William around 7am for about an hour, returned to the gym and closed at 8pm, went back to visit with William until 11pm, went home hoping to sleep without hearing from the hospital.  That in itself was a challenge.  Even if the phone never rang my sleepless nights seemed to be routine.  This went on for 92 days. Some days were better than others, of course.  Either way, I got to see my boy!  I guess everyday was a good day.  Perspective. I often wished I were he or that he were me.  I would have done anything to trade places with my son.  He was barely 2 pounds but his shoes were much harder to fill. They were way bigger than mine.  I was up for the challenge. Our favorite nurse, Debbie, told us to keep a journal.  She said to write in it every day and one day we would appreciate looking back at it.  Today is one of those days. Regardless of the storm our family was going through, I was able to write down some encouraging words in our journal.

What I wrote two days after William was born, September 13, 2006

When the doctor told us that he did not expect William to survive through the week, I hurt to my soul. It was debilitating. Did it feel like the doctor punched me in my stomach? Getting kicked in the stomach by a horse is more like it. I thought, “How can he say something like that? How can he be so heartless?” The problem was this stuff was real. I mean it was real, yet I still couldn’t wrap my head around it. I couldn’t process the information. I was angry, hurt, and offended that he even said it. Why? Because my son was down the hall fighting for his life, literally! It was not that I thought my son was going to die. It was the possibility. That is what scared me. William had a number of obstacles in front of him. At first, he just had bleeding in the right side of his brain. A day later the bleeding was in both sides. He also had a collapsed lung, high blood pressure, his blood sugar was through the roof, and he was unable to breathe on his own. He was on 100% oxygen! Uphill battle? There’s no feeling like helplessness. I just wanted to do something for him…anything! Nothing like looking down at your child, who can fit in the palm of your hand, eyes covered in gauze because their underdeveloped, who’s laying inside of a container the size and shape of a cookie sheet wrapped in saran wrap with steam being blown over him (along with a heat lamp) to keep him warm.