In the whirlwind that has been my life, I have thought about how and if I would write about it. I have a difficult time saying the words. I seem to have avoided writing so I didn't have to file it.
But I am trying to face my fears. Beyond crazy albino frogs.
Kath, who will be 15 months old tomorrow, was diagnosed almost three weeks ago (Friday) with CP. I have a very tough time saying the real words. The abbreviation seems a little easier to deal with it.
I knew something was 'up.' I knew she wasn't behaving how she should for each of her months, from 8 months on. But it took some observations, marking time, and her yearly physical until the 'ball started to roll.' I told the doctor what I saw happening--or not happening- with Kath. She wasn't concerned but said she learned to trust her parents and sent us for an evaluation with Early Intervention. A month later Kath was evaluated with a delay-at 13 months she was at an 8-10 month olds development. She began PT in Jan. Improvements showed quickly. At the follow-up the doctor said she should see the neurologist. We waited for the appointment, but was called one Tuesday for a Wed appointment. At that appointment I heard scary words like autism and CP. An MRI was to be scheduled. Supposedly in two-three months. It turned out to be that Friday. The results came back with 'extensive abnormalities' in her left side, less folds in her brain impacting her movement and language. Cerebral Palsy.
For reasons we will never know, she was denied oxygen during her second trimester and suffered a stroke. That caused the damage.
We swam in bewilderment. I swam in guilt--what was going on during that time? Did I do something? She was supposed to be safe in me. I am supposed to be the one person --ok dad too- who can safeguard my children, but especially pre-term. I grieved feeling a loss of possiblities for Kath's future. Friends, loves, children.
I felt that surely everyone could see, somehow, that I was marked--no, that she was marked. That we were limping along trying to come to wrap our brains around this new child. My body actually ached like I was in some kind of accident, one that causes a sudden seizure of muscles and tightness for days afterward.
Then the next day she began running a fever. 104. She continued to fever until Thursday. She had an ear infection. A regular old ear infection. Not some strange side effect of a disease unknown.
I began to study my foe and understand it better. Disabilty, not disease. She wouldn't get worse. I began to lick my wounds. I avoided everyone. Phone calls to the house were people looking for me to console them. I did not have the energy. I was dealing with it all, plus a girl whose fever wouldn't go below 102 even on Tylenol.
The more I read, the more I tettered between feeling calmer and freaking out. Lack of sleep may have helped on the latter.
Then Sue--our PT--came over. Even though Kath was too sick for PT she knew we had questions. She said the magic words. She said 'minor case.' Since she knew Kath on a different level than our neurologist, I jumped at her words. Hell of a lot better than "extensive abnormalities."
On that Friday, some of the healing of my soul actually began but I didn't recognize it at the time. Chris sent me a list of people with CP who have lead incredible lives. Nick, after blasting God, told me it was no one's fault. Then an outpouring of love through emails of quiet support. A strong husband who took the front line barrage of frantic calls. Then Sue's magic words. An EEG that hasn't elicited a phone call telling us to be prepared for seizures or other issues. An incredible growth spurt of activity from Kath herself.
I am able to breath. I am able to push back some of my fears and try to start getting back to normal. I realize I have the same little girl, who just happens to have CP.
However, when she falls asleep in my arms, exhausted after having worked so hard to stack blocks or make her tight limbs move where she desires to go, I hold her. I don't lay her down in her crib. I hold her and I wonder, what made the oxygen go back on. I know I won't know. But I have stopped -for now- wondering what made it shut off. Now I am amazed and awed, what made it come back on?
We could be looking at a much different scenerio, if it hadn't.
I can't say 'by the grace of god' because that would seem to suggest that others didn't pray as much or weren't as worthy or whatever. But it has made me look on God more and try to refigure it out again. Especially when my three year old has suddenly started taling about God and Jesus and Mary!
Anyway, I am taking one breath at a time. I am holding onto each moment as long as I can. And I am breathing again.