For some reason, this past week, as we watched Teddy wander through the room, I asked my husband if there was a ever a time he believed Teddy would never walk. And he said yes, there was a period of time when he didn't believe Teddy would ever walk independently.
There were so many days at physical therapy that I just wanted to hear his therapist say, "Oh, I've seen kids with these tone issues, and he'll be able to walk independently just fine." Instead, I heard things like, "Our goal is to help Teddy learn how to use his gait trainer, so he can safely navigate his classroom when he gets to the school setting."
Still, there was one defining moment for me, and I don't recall exactly what it was ... It may have been as simple as Teddy cruising along furniture or walking holding one or two of our hands. I remember becoming confident that although it may take time, Teddy would learn to walk independently.
Now, as I watch him confidently wander around the house, never watching where he's going and moving with the grace of a drunk monkey, I'm in awe that we ever doubted he could walk. When I watch him pop up unassisted in the middle of the room, it still makes me smile because it's something he couldn't do a month and a half ago.
As I enjoy these accomplishments for him (and let's be honest ... for the long-term future of our backs and bodies as Teddy's parents), part of me wonders if speech could be the same way. The first babbling sounds we heard from Teddy were last April, right around Easter, and sounds from him have been sporadic since. He goes through periods where he is more vocal, but his babbling hasn't really progressed. School is working with Teddy to use buttons to ask for more snack or milk. We know of other children with the same diagnosis who use assistive technology to help them communicate. We know of some who use some sign language, and we have made half-hearted efforts with Teddy with signs. We also know of some children with Teddy's diagnosis who can speak at least some words.
Part of me wonders if one day I'll look back and think to myself that I was so silly for doubting Teddy could learn to speak actual words.
Then again, part of me fears that day will never come.
This is our family's journey with the rare PIGN genetic disorder Multiple Congenital Anomalies-Hypotonia-Seizures Syndrome 1. When our son was diagnosed in November 2015, we were told he was the 15th documented case in the world. We've discovered more affected individuals since, but it's still an extremely rare and unknown condition since its discovery in 2011. Our hope is to create awareness of the disorder and foster a sense of community among those affected by the disorder.
No comments:
Post a Comment