These Ankle-Foot Orthosises are Made for Walking

Louie took his first independent steps yesterday. It was in physical therapy and it was all for the mailbox. I can't quit you mailbox! Anyway, the therapist said not only did he take steps, he did it four or five times and went the distance of 20 feet or so. I was only able to get him to take a few steps at home, no 20-foot stretches, but still, he did it! Definitely awkward, he holds his left hand up in the air as though he is still holding someone's hand and with each step you think he's going to fall.

Walking has been one of the big ones for me. One of the delays that has brought the most sadness. If I stop and think about it, I realize this is probably my sadness, not Louie's. He doesn't know what he's missing out on. But I do. The park, the playground at school, outdoor birthday parties with water games. Of course, he can go to all of these but he can't really play, let go, be a kid. Last summer on vacation we were down at the hotel's lovely pool...there were fountains to to play in; children shrieking and splashing through the water, little chubby one-year-olds walking about. And there sat Louie in his tropical fish sun hat and swim diaper at the edge of the pool. It was one of those startling moments that, ironically, sitting 100 yards from the beach I felt as though I were 10,000 feet above sea level. An altitude where the air felt thin and I couldn't catch my breath. We told the waitress to make our food to go and I let the moment get the best of me as I cried behind my sunglasses. It was startling because I thought I was beyond all of that; all of those comparisons to typical kids, all of that grief about the child I thought I was going to have but who turned out to be someone completely different. Now I've come to realize that there will always be those moments where I revisit the hurt. Knock, knock, it's me again. Can you please mend my broken heart?

The parents of children with special needs walk a fine line between realism and hope. I've given up the soccer games, the idea of Louie driving and on many of the expectations parents usually have of their children. Often people say, "Well, you don't know...he might play soccer. You're being so negative!" It does seem that way, doesn't it? And they may be right. He could very well play soccer. But that's what I mean about the paradox between hope and real life. Maybe it's just some defense mechanism triggered when one parents a child with special needs. It seems negative to those on the outside, but to us, it's our suit of armor. And we need it for all the battles we fight as we advocate for our children and of course, the battles we fight within.

Our pediatrician's daughter passed away from complications of Rett syndrome. He recently said that one of the many things he misses about his daughter is how she made them a better family - a little more empathetic, a little more caring and sensitive and a lot more compassionate. I've heard it said that life does indeed break us at times, but when we heal, we heal stronger where the break occurred. I find comfort in that.

When the therapist called yesterday to say "Oh by the way, your son can walk" I had a hard time holding it together. Sitting in my car, in the grocery store parking lot, I fell apart, fell piece by piece into the sweetest joy and it felt so good. While it never doesn't hurt, I believe it is we, the parents, who carry this burden of pain because our expectations won't be fulfilled. But, the kids, while they sometimes have to endure physical pain and health issues, I believe they are happy. Happy to push buttons on the microwave, to spin a wheel, to hear their favorite song. Happy to be alive.

Your joy is your sorrow unmasked...
The deeper that sorrow carves into your being,
the more joy you can contain.
- Kahlil Gibran

Louie, keep on walking. Whatever your reason may be...the mailbox, the vacuum; it doesn't matter. Because you've got parties to attend, playgrounds to play on, slides to go down and fountains to jump in. The miles lie before you and the road is yours to walk. Stand tall, my boy.