Wednesday, May 03, 2006

Disconnected

I always felt somewhat disconnected from people my age. In grade school, while the other girls played with Barbies, I played Little League baseball with the boys. In middle school, when the other girls talked about the weddings they'd have, the men they'd marry, I thought about finding a career. In high school, while the other girls put on makeup and dressed to impress the boys, I was mortified by the superficial. I ignored them and reread "Siddhartha."

But now as the mother of a child with disabilities, I feel the most disconnected from my peers that I've ever felt. Other mothers complain about "chasing" their 2-year-olds around, how tiring it is. But I cherish every step my son takes, and I would chase him forever.

Jordan was born with both hips and one knee dislocated and with clubfeet. Looking at his feet and legs in the beginning, it seemed impossible that he would ever walk. Doctors told us different things, most not so positive. As I lay in the recovery room after the c-section, one doctor told me Jordan may have a chromosomal disorder and would "be mentally retarded, have heart problems, and die before age 1."

But it turned out to not be so serious. He got the first casts on his feet when he was only 9 days old. Then at 2 weeks old, he started physical therapy two times a week. The casts were changed every week, then every 2 weeks. He had three orthopedic surgeries (plus two other ones!), each one more painful than the previous one for me, harder to watch as he grew older and more aware of what was going on, until he was able to break my heart by saying, "Boo boo hurts." Then braces—first starting all the way from his toes up to his hips, with this metal band that went around his waist like a belt, all to help him stand. A night, he wears the braces with the metal bar between his feet. This is to help keep his feet in position so they don’t revert to the positions they were in before surgery.

Then of course there has been the physical therapy. A lot of stretching, pushing him to stand up, pushing him to take tiny steps, many times moving his legs for him one by one until he got the feel of how his legs move. Even so he got the feel of his own legs and feet. They've been in plastic, metal, and fiberglass for so long, most of his life, that the feeling of just his bare legs must be strange to him. He loves putting on lotion himself at night. He could do it for hours at a time if you let him. He smiles so much as he rubs the lotion through his fingers and across his legs and feet, lined with more surgical scars than anyone of any age should have to have.

But he is also so happy. He lives his life to the fullest. He danced before he walked, and not just any dancing, but the throwing yourself around kind, the laughing hysterically kind. And at 21 months old, he seems to know that he has already done great things. Just 2 weeks ago, he took his first steps on his own. Some people may think it doesn't "count" because he uses braces and a walker, but to me, it's the most beautiful and amazing thing in the world watching him walk through the grass with the other kids.

So the other mothers can have their complaints. I will stick with the appreciation of every baby step, knowing that taking just one step at a time can get you everywhere you need to go.


1 comment:

Eli's Mom said...

I commend you for staying so positive when lesser mothers would have crumbled. Your little man appears to be happy and healthy, and it doens't look like he's slowing down anytime soon!

My son also has clubfeet. We are currently treating him with the Ponseti method; he's in the DBB approx. 20/7 right now. I felt disconnected from my peers when we first found out about Eli's feet also....noone around me was going through the same thing. I was able to find support and friendship online in the support groups on Yahoo.