Most people swear by their doctors. Specialists are even more revered. I needed both for my daughter and looked long and hard for the best of the best. It has been an indescribable journey to places in the heart and states of mind impossible to ever fully convey, with an extensive cast of characters in and out of the medical profession. One small conclusion? To this day I still maintain that every doctor should spend some time with their patients in their homes. Imagine what my daughter's neurologist could have learned from watching her have seizures, slurred speech, memory loss, and coordination weaknesses, with nothing but tactile memory to reassure her that she belonged where she was and not somewhere else.
Sometimes having the very best doctors just isn't enough.
When my four year old daughter developed an unusual seizure disorder we immediately began searching for the best doctors we could find.
The initial diagnosis, or lack of one, came from a renowned neurologist: Christine was not epileptic. Her seizures were non-convulsive. None of the standard seizure medications worked. She would simply pass out and stop breathing. All we could do was sit there and watch her turn blue and be as limp as a rag doll while we waited for that all-encompassing big breath that came after agonizing seconds.
This went on day after day, night after night, sometimes ten or twenty times a day. A good day was around fifteen and bad days ran fifty plus -- for the next eleven years.
It wasn't a disease, it was a condition. It might or might not last. It definitely was causing brain damage, motor skill damage, speech delay and memory loss. Imagine looking into your daughter's face and having her look back at you not knowing exactly who you are or where she was or why she was lying on the floor, day after day after day.
Sometimes even the best of doctors can be wrong beyond belief.
Standard seizure medications did not stop the seizures. Combinations of stronger seizure medications were prescribed, all toxic and with myriad side effects.
Christine was lost and confused most of the time. Many of the medicines left her little better than a zombie. She never complained, rarely cried, spoke very little, moved even less. And still the seizures continued. By age eight we were advised by two specialists to institutionalize her.
This was when I decided to take control and follow my instincts. No one knows Christine better than I do. I know exactly what she can and cannot understand. I simply capitalized on this information.
After each appointment with the neurologist I began spending more and more time with Christine, repeating all the hand and eye examinations the neurologist generally began each session with. I taught her how to walk on tip-toes, to walk backwards, stand on one leg and then the other, sip through a straw and lastly to jump. I created more and more games just to keep us all doing and thinking but most of all to keep Christine's fund of knowledge from slipping further away.
In my mind, the more I could teach her to do the better she would be. I had no idea where I was going with this and I certainly did not have any particular goals in mind, I simply wanted Christine to be able to understand and accomplish everyday things. I did not look to the future -- I simply stayed focused on today, right now, this minute.
The specialists told me I was wrong, it was pointless, and I should give up and consign my only daughter to the sterile hallways of some faceless institution. I ignored them, I defied them, I refused to surrender.
Sometimes the best of doctors have very limited imaginations.
Christine will be thirty this year. Our family has survived...damaged but together still. She lives in a wonderful group home over an hour away. She has kept her job at the local college's dish room for over two years. She's an avid reader and loves to write stories. She currently has five published books (each about 25 pages) with original art. She can cross stitch, crochet, and bead. She's a whiz at 500 piece jigsaw puzzles. Her abilities are simple but her imagination is huge. She may require twenty-four-hour supervision, but every year she matures by inches. She will forever live in a world where she wears a sneaker on one foot and a high heel on the other, but at least she has a life and not an institutional identity.
I've learned many tricks and a few huge truths along the way. I remind myself of them often in order to keep my depression at bay and my emotions under control:
False hopes are more dangerous than your worst fears.
Expectations can kill you.
Don't wish for anything.
There's no going back except in your memories...and most importantly:
It takes a lifetime to sort things out.
This is not a world for the disabled. My daughter is mentally challenged. She is at the mercy of a number of poorly constructed, limited or outdated programs, but I've become a fierce advocate for her and can go toe to toe with the best of doctors and specialists. I learned long ago that sometimes even the best of doctors are not enough -- but I am.
This is the final paragraph of my daughter Christine's first book, The Story of My Prince and Me:
In honor of their love for each other being so strong and true Christine and Vincent decided three months later to renew their wedding vows and this time Christine was dressed in golden yellow like any princess would who would one day be a queen. Vincent wore a orange and brown suit since any prince who would be king one day would be allowed to wear and after they had a long kiss and were married a second time in the presence of God Christine and Vincent knew they were the most devoted husband and wife there had been in years. Their passion together and their story was only at the beginning. Their story still had many chapters to it that had not yet been told but hopefully would one day be written in the stars. To be continued...