Neither of My Children Are Typical

We've suspected since Teddy was 5 months old, that there was something different about him. His genetic diagnosis with CDG-PIGN in 2015 confirmed what we already knew ... that Teddy wasn't a typical child. 

As the years have progressed, though, it's become crystal clear that neither of our children are typical. Although they both share many of the traits of other children, such as a desire to play, laugh and have fun, there's defining qualities that set each apart from their peers. For Teddy, his genetic diagnosis is the defining difference. For AJ, I'm honestly not sure if it's who he is or who he became because Teddy is his brother. I think AJ is inherently a sweet, considerate and sensitive child. But I know that living with Teddy has also shaped him already into an even more compassionate, thoughtful person. 

All siblings get on each others' nerves and fight in their own ways, and our boys are no different. Teddy wakes up some mornings determined to live up to his birthday shirt of shenanigator (one who instigates shenanigans) with AJ as his primary target. There may be headbutts and tears on those days. Yet, when AJ and I spent some time reflecting about what we're most grateful for during the pandemic, the thing he was most grateful for was having Teddy as a playmate and brother.

AJ recently decided he was going to read this entire blog, which has prompted some questions because I certainly didn't write this blog with children as the intended readers, much less AJ, at least not at this age. But he loves reading the stories of our life, so I've encouraged him to pose the tough questions to me instead of the childcare provider at least. One of those questions centered around diagnosis day, when I shared the tremendous guilt we felt that AJ would never have a typical brother. He couldn't understand why that was a bad thing, so I asked if there weren't times that he maybe wished his brother didn't have CDG? He answered immediately, no, that Teddy is the best brother in the world and that he loves Teddy. 

See, that's one of the amazing thing about AJ. Although there's things about Teddy he wishes were different, such as Teddy giving him some personal space, not being aggressive toward him or the ability for Teddy to talk, he loves Teddy as he is. 

Then there's mornings like this morning that make up for so many of the fights. I was trying to get through a few work e-mails since both boys remarkably slept past 6:30 a.m. I heard Teddy stirring in his room, but I continued working since he wasn't unhappy. I heard AJ wake up, but he never came in to say good morning, so I continued working while keeping an ear on Teddy's room. When I wrapped up a few of the e-mails, I headed to Teddy's room and had already started to open the door when I saw this note:

Handwriting is still a work in progress. 

As I cracked open the door, I saw a poopy diaper already bagged up on the bed, ready for the garbage can. AJ had assisted Teddy in putting on his shorts (although they still ended up with both legs through a single hole). He had plans to get Teddy ready for the day, read him stories and let me "sleep in" until 7:45. Seriously, what other kid does that? What other kid is willing to change his 7-year-old brother's poopy diaper? Without being asked? 

So, my realization today was that neither of my boys are typical. And I'm all the more blessed because of that. 

Sidenote: When Teddy was diagnosed with CDG-PIGN, I quickly realized the word normal could be hurtful. If I compared Teddy to other children and used the word normal to describe other children, that implied that Teddy abnormal and sounded like he was inferior to the others. So I settled on the word typical to describe other children who didn't have a genetic disorder like Teddy.