A few weeks ago we went to our first meet-up for families and people in the area with Aleck’s condition, Arthrogryposis Multiplex Congenita. It was at this lovely handi-capable center in Burr Ridge with a petting zoo in the background. Unfortunately it started at noon and Aleck usually goes down for a nap at 12:30pm but we figured we had to go and we’d just leave when he got cranky, so we’d be there about an hour. Three hours later we pulled ourselves away from what turned out to be one of the best experiences we’ve had since Aleck’s diagnosis. I know I was definitely nervous about going. Last summer we chose not to go to the AMC convention despite its convenient location, Indianapolis, because we just weren’t ready. We weren’t ready to get a vision of what Aleck’s life could be like, we weren’t ready to see just how bad this condition can be for some people. We certainly weren’t ready to be in a room of 500 people similarly affected. We wanted to keep our vision for Aleck’s future clear and as optimistic as possible since despite his diagnosis his potential was and still is, limitless.
I had brought my camera to the meet-up thinking I would take pictures of some of the families and the kids just so that they’d have them to remember the event. Eventually I just handed the dead weight over to Craig so he could put it back in the car. I didn’t want to shoot. Not for a second. All I wanted to do was talk and interact with these other mothers and care givers who had gone through a similar process. I didn’t realize how excited and relieved I’d be to be surrounded by people like me, and how excited they were for the same reason. I ended up in deep conversations with at least 6 different families about their experiences, doctors, surgeries, therapies, etc, and then realized, once we left, how many things I didn’t ask about, didn’t talk about, didn’t share because there was just so much ground to cover.
Aleck found a few friends of his own there and it was so much fun to watch him interact. There was a 21 month old boy with casts on both of his legs, affected in his uppers and lowers, who was crawling around like a madman. His mom told me they have to keep him off the pavement because he’ll wear through his casts. He’s being serial casted to bend his legs and with two older siblings he’s got plenty of people to chase after in his household. We got him to sit still for a few minutes by playing with Aleck and his little toy balls on the floor of the center. It was so much fun to see the two boys interact and watch each other so carefully. Aleck isn’t anywhere near crawling but of course we hoped that he would be inspired by so much movement from a boy about his age. Either way it was so cool to see the two of them together.
And being the ladies’ man he is, Aleck picked up an older girl, 4 years old and just gorgeous, who couldn’t stop making silly faces at Aleck to get him to laugh. She was affected in her upper and lowers and used a walker to get around. There was this gold leaf headband in her hair that made her look like a little goddess. Her mom was only 20 when she was born and her parents aren’t married. They live hours away from their parents and the rest of their support team. Since I’m so thankful everyday that we live so close to family I can’t imagine being so far but also being so young with such a huge burden to bare. I couldn’t even keep track of all the surgeries and procedures her little girl had to get her to this place. Her mom just poured it all out to me in about fifteen seconds, clearly anxious to get her story off her chest and out in the world. There was a certain relief we all felt, being surrounded by our own kind, it was amazing. By the end of the event we were all begging to organize another meet-up sooner rather than later.
There were two boys there who were both in electronic wheelchairs, severely affected in their upper and lower body. One of them was having an absolute ball letting the other kids, and his older brothers, bury him in the sand. Instead of his nametag saying his name it said, “hotdog” and that about said it all. With spark and energy to spare he was the hit parade of the event. His mom was the one who organized the meet-up and she’d been trying to meet us for months. For some reason I was so scared to meet her and taken aback by how she was reaching out to us with such open arms. This feeling of panic shot through my entire system everytime I got a message from her and no matter how hard she tried I always found a good reason for her not to come visit us at the RIC, even though she works across the street. W e missed each other again when Aleck had his tonsils and aednoids removed as we were napping when she came to our room at Lurie. But then we finally met face to face at the Developemental Fair for children with special needs at Gordon Tech High School. Because we are both on the moms’ group on Facebook we recognized each other immediately, and after spending some time with her at the meet-up I’m embarrased by how much I pushed off this wonderful woman. Craig and I both loved her warm energy and she’s been fighting the good fight for 7 years now, working full time, and raising two other boys in the process. In her “free time” she’s been working on a documentary about AMC, driving across the country to interview people and families living and dealing with Arthrogryposis. She’s officially my hero.
The other boy had made his way out of his wheelchair as well and was crawling around the park on his knees, through the grass and mud. At about 12 years old it could be startling to see a boy his age crawl, but in this environment it was just normal activity for him. Craig and I loved watching him leave his chair behind, catching up with his friends, and playing just like a boy, getting all dirty as he hightailed it to see the animals across the way. Both of these boys were such a tangible visual of how people figure out how to make life work for them, in their way. He wasn’t just stuck in his chair sullenly watching the others play, but instead he was down there with them literally getting dirty. His parents just laughed about how independent he is, barely waiting for the car door to close, before finding his way to meet his friends, just like any other boy his age. It was just awesome to see.
In retrospect I wish I would have spoken to the older people who were there who were affected with AMC. It’s funny but it ended up being the caregivers, mothers, fathers, wives, sisters, who I ended up sharing stories with the most. I think I was afraid to ask the really personal questions from the twentysomething girl affected in both her upper and lower body but walking on her own, clearly able to take care of herself. I also didn’t talk to the woman in her late 30’s who was only affected in her lower body, who brought her own little infant to the gathering, instead I talked to her mom. And instead of talking to the man in his 40’s in the wheelchair, affected in all his extremities, I spoke with his wife who he had met on an online dating site. But we couldn’t help it, like searched out like, parents searched out other parents, we were all relieved to have all these people to talk to because during this afternoon we were no longer alone.