Friendship

As parents, we want our children to thrive physically, emotionally and socially. We want them to be accepted and embraced for the wonderful, quirky little humans they are. We want them to have friends, good friends.

Over the last two years, I've had the pleasure of watching AJ thrive in middle school with an incredible friend group. He's found his tribe of friends who share common interest, laugh hard together, definitely fit together in their own wonderfully weird way and have each other's backs. It's been such a joy to get to know these boys and to see AJ have the friendships he's developed. And, boy, is he a good friend, thoughtful, kind and empathetic.

With Teddy, it's always a bit of a mystery what happens outside the realm of our supervision. We know he's had playdates with our friend's kids and that he's a social boy who believes everyone is his friend. He's had two friends from the bus and school through the years who have done play dates, and he's certainly enjoyed those. But this last year has been incredibly special in terms of friendship.

At his after-school programming, he became friends with another younger boy. Since I don't do after-programming pickup most days, I was quite confused at the library when all of the sudden a woman asked me if Teddy was Teddy. I said yes, and she told her son that Teddy was at the library. This little boy screamed Teddy's name, ran across the library and scooped him into a hug all the while Teddy was grinning and excited to see him. I told the lady I needed a bit of help, and she clarified her son and Teddy were friends from this programming. It was just cool to see that relationship.

The other relationship that has blossomed into a full-on bromance is Teddy and his friend Mikey. What started as classmates and friends at school has evolved into all sorts of play dates this summer, playing baseball on the same team, shared dinners and all sorts of fun. No matter how much time these two spend together, it is never enough! Mikey is constantly asking what Teddy is doing, when he'll see Teddy and if Teddy can come play. And Teddy is always searching for more of Mikey, asking in his own way to include him in activities and literally bouncing up and down with joy to see him every time. 

Baseball besties made this season even more fun!

It was interesting hearing from Mike's parents about their introduction to Teddy. They said Mikey constantly talked about Teddy, how much fun they had at school, how they sit together, and nonstop chatter about Teddy. But they never got details exactly on what they did together or what they talked about, so they weren't quite sure what to expect. They reached out to us through a letter sent home on the bus with Teddy how they've heard all about Teddy and would we like to get together. I was so tempted to be sassy and say we'd never heard a word about Mikey but figured that wasn't a good way to start a friendship. You can imagine that when they learned Teddy is non-speaking that clarified for them why they never heard what the boys discussed. 

I'm so glad they reached out because the two boys are such a joy to watch together, and they make each other so darn happy. Mikey talks enough for both of them, but they understand each other with Teddy's signs and gestures and simply get along. 

For a child like Teddy, it's incredibly cool to see this type of friendship develop. I'm here for all the best friend moments! (No, really, I still have to supervise Teddy. But dang, this is mostly joyful to supervise.)

Happy Belated Birthday!

Two weeks ago we celebrated Teddy's 12th birthday. While 12 may not seem like a milestone, every birthday for Teddy feels like a milestone because of the medical literature that existed when we got his diagnosis when he was 2.5 years old.

At that time, there was so little known about his disorder (at the time called Multiple Congenital Anomalies-Hypotonia Seizures Syndrome 1, now known as PIGN-CDG) that Google returned less than 10 results. And tucked into those results was the life expectancy of 3 years.    

Imagine reading that when your child is only 6 months away from turning 3, wondering why he has this invisible expiration date that you didn't know existed, contemplating how your relatively healthy child could be dead in months. 

Needless to say, the medical literature was wrong. While his disorder does unfortunately take away far too many of our children far too early from complications from seizures, respiratory illnesses and a world that is too hard for those sweet ones with medically fragile bodies, others are surviving and thriving well into their 30s and likely beyond. Given that this disorder was only discovered in 2011 and that there's so few known cases, that's why we aren't aware of older individuals, not because they don't exist.

So that's why birthdays feel monumental. At times they feel challenging because it's hard to know what to get Teddy some years. Other years it's a reminder of another year of age, yet developmentally not being where his peers are. We never know quite what emotions will arise with birthdays. 

But this was a sweet year, a day filled with a bunch of family and friends. A day spent playing with all his people, loving that more than any of his gifts, though he did great opening his gifts. A year with lots of ice cream gift cards, so he and his best friend can keep visiting Baskin Robbins like it's going out of style. 

Oh, and there was dancing and a giant dinosaur balloon to ride ... until it died. But it's probably an OK thing that it died because Teddy was about to make all the adults ride it. 

Birthday boy with his toys.