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I always knew Peyton was different. From the moment he was born he just acted different and we reciprocated appropriately. Of course then we just thought it was because he was the youngest, we knew we were done having children; so that's why we held him a little longer, gave in a little easier, and coddled just a bit more. Looking back on it, I think we instinctively knew that he needed more from us.
We always knew he was developmentally delayed, but weren't too worried about it. He would catch up, just later than his siblings did, and later than other kids. When he was 15 months old he was diagnosed with "unspecified seizure disorder" and that would be blamed for much of his language delay. Our pediatrician suggested we do genetic testing to make sure we were treating everything correctly and it wasn't a part of bigger umbrella diagnosis. We thought he was overreacting and it was going to be a very expensive check mark on an already long list of things we've checked for Peyton, but since we trust our doctor, and since he only had a handful of words by 3 years old, we agreed.
So, we were not prepared to get this diagnosis or all of the information and appointments that came with it.
I've been bitter. I've been angry and sad. As mom's you are always looking to the future thinking about their first day of school, their first date, job, etc. We asked the geneticist 'what is his life going to look like? will he live on his own? will he ever even be in regular school?' and they couldn't answer because it is such a spectrum disorder. Jesse and I went to dinner alone after that appointment to process, to think out loud, and honestly to grieve a little. We said ok, they can't tell us what his life is going to look like and that sucks but the flip side is that they can't tell us what it WONT look like. No one can say to us that he WONT talk, that he WONT be able to do a million other things.
It is so easy to get caught up in the future planning, looking ahead to things. We all do it, it's natural, but you miss out on what's happening now. We have been forced to live in the present, to focus on NOW. He's healthy. He's happy. He told his sister to "stop it" the other day and she was so shocked that she actually stopped. We love little moments like that, and not just with Peyton. 22q has given us the gift of presence with our other 2 as well, and I think our whole family has benefited from that mindset. Jesse and I have always been pretty laid back, type B people, but living with something like this, as I'm sure other families can attest to, makes you just more relaxed about stuff. You realize those things that are easy to get upset about, are just not a huge deal in the scheme of things.
We grieved, we adjusted, we see our blessings and the gifts we've been given, and we're just living our best lives...With 22q. Peyton is now 4 and is making such incredible progress. It's an exciting time for sure!