Bad Words

Momma always said, "If you don't have something nice to say, don't say anything at all." I guess I should just keep my mouth shut all of the time then. I think Cerebral Palsy is a bad word... a very bad word. And all the little words that come with it...Spastic, Quadrapeligic, AFO, Bathchair, Activity Chair, Walker, Gaittrainer, Stander, Vest, Speech Therapy, Physical Therapy, Occupational Therapy, Play Therapy, Handicapped accessable Van, Handicapped Accessable Bathroom, Creepster Crawler, corrected vision, possible wheelchair...
We had our followup appointment last week (see Great Appointment post). I was being really upbeat when I posted the results. But let me be honest. It stinks. You know, Kelly started having her epilepsy problem last summer. That is when her development started to slow down. At the time the therapists and doctors said that she was probably just behind due to prematurity, then she was further behind because of the West Syndrome. All of these things, I could fix. I could change. Give her a pill, take her to therapy, say a prayer. I could do just what a parent is intended to do...take care of and fix the boo boo. Now, after this last appointment, they are confirming once again what they have hinted at since January, that Kelly has Cerebral Palsy. I know, I know that it does not go away. I guess that some small part of my soul just hoped and prayed that when we went in this time to see the doctor, he would say, "Wow, Golly Gee (in German of course), I made a mistake. Kelly is just fine, she is just still developmentally behind. She does not have this bad thing called Cerebral Palsy that has no cure. She will not be disabled and picked on by other humans. She will be a perfectly normal twin to her sister Sabrina. She will walk and she will run and she will play hide and seek and she will win." But, the doctor did not say that. And I am having to deal with the fact he will never say that. Kelly cannot be rid of Cerebral Palsy (bad word, bad, bad word) ever.
Now, she had made improvements. But I cannot cure my baby. A pill and a bandaid will not heal this wound. That makes me feel I have failed as a Mom.
I was in that hospital bed for 10 weeks, on my back, with my butt high up in the air, speaking a foreign language, watching crappy television, separated from my still baby daughter Katja (10 mos old at the time). Why, could it not have turned out okay?
Believe me, I am grateful that we do not have as many problems as other preemature children. I know we are lucky. I just want Kelly to be completely lucky. I want her to be completely normal. I do not want to have to add the word Cerebral Palsy to my daily vocabulary. It has taken over our lives. I live and breathe handicapped equipment and therapy appointments. Those are the only band-aids I have. Well, that is why they call blogging therapy. I got that out of my system. I do not feel better but at least I got that out in the open. I have to go and get the children up from their nap. Duty calls!!