Thursday, June 05, 2008

If I knew then...

When my son was some orthopedic issues, I thought I knew what it meant because I had just spent the last 5 weeks of my pregnancy with a broken ankle. I was miserable and not a “good patient.” I complained constantly, my arms hurt from hoisting myself up, and I was just downright miserable. Maybe some of it was because I was 9 months pregnant and walking on one leg on crutches, but who knows how I would have been otherwise.

On top of what I already “knew,” the doctors had dire predictions for Jordan. The first one said he might have trisomy 18, meaning “mental retardation, heart problems, and die before age 1.” We took him to so many specialists those first few months. How scary is it to take your newborn to a neurosurgeon? They said he would never walk, and he would be incontinent. He had some kind of growth on his brain. The cyst on his nose might be brain tissue coming down through his nose, and any kind of little cold might lead to meningitis. It went on and on. Waking up a few days a week to take him to more appointments, only to hear more horrible things that were going to happen to him.

I recently edited a book that prepares people for taking a nursing exam. The author stresses that giving “false hope” is unethical. Nurses shouldn’t say, “Everything will be okay” when it might not be. But is it also unethical to give only worst-case scenarios? That seems to be all doctors give these days. I understand they want to protect themselves from malpractice suits. But would it be so bad to give a little hope once in a while? Anyway, can hope ever be "false?"

I wish just one doctor or other “professional” would have told me that yes, your child may have some medical issues, but above anything else, he’s a KID. The doctor visits, the surgeries, the physical therapy and evaluations become just things you have to do, and your child grows up anyway, despite everything. It really hit me one day when he was about 1 year old, a quiet moment sitting at the table with him eating French fries. And I realized this is normal. This is just our life. The regular, everyday moments had finally surpassed all the medical stuff we had to do. He was growing up despite what everyone said. He was just a regular kid, with likes and dislikes, things that scare him and things that make him laugh. The doctors never tell you that your child will learn the alphabet, make friends, love movies, sing songs, play the drums, love cutting things out of magazines, and think he's a pirate. To them he is only a medical diagnosis. If I had known then what I know now, the start to our journey wouldn’t have been so difficult and frightening.