Just a quick reflection of this past celebratory weekend……
If you’ve read my previous posts, you know that Derek and I are somewhat decent at deciphering Greyson’s vocal stims. For example, “Uh-DUHHHHHH” means he’s really mad and you should leave him alone and “dig-dig” is typically something funny (it’s turned into more of a “tig-tig” for tickles now). The only stim that we have not figured out is “dig-a-lay-lay”. We did ask how he felt about his birthday on Saturday, which he replied “dig-a-lay-lay”, so hopefully it means something good? HA HA. He’s trying so so so hard to communicate, especially when he is extremely excited or passionate about something.
This past weekend, we celebrated Greyson’s 4 year-old birthday by having two separate family parties. We did it this way due to COVID-19 and not having a large group of family members together. Saturday, his actual birthday, was celebrated with my family, where Greyson had a “Toy Story” themed party. We had only immediate family members (again because of COVID) and it was small, but Greyson had a blast! Greyson woke up on Saturday and was extremely excited. I think he knew that something was up, especially since Roslynn was screaming “Happy Birthday, baby G!” all morning. Once I began decorating with the Toy Story decor, his face lit up immediately. It wasn’t as fun as the Bounce Kraze party we had last birthday, but it was more intimate and it was nice that everyone could talk and hang out.
Greyson’s favorite part of the day was the balloons. We had a few dozen balloons for him, and he was so excited once Derek brought them into the house. The next 8 hours basically consisted of him wrapping himself up in the balloons and playing with them rather than the toys he received as gifts.
Our birthday celebration continued into Sunday, with Derek’s immediate family, who planned a fun picnic outside for Greyson. Greyson was able to play on his swing set and run around outside, despite the heat and humidity. We had a blast playing and running around, which is his favorite activity. G’s seizures are typically triggered by heat/sun/humidity, but because we discovered this last summer, we were able to spot his warning signs (starting to foam at the mouth and slow down physically), preventing a seizure. I’m starting to think that maybe Greyson even realizes his limitations, because every time he gets overheated, he requests to be picked up and carried inside for water…which he would have never done last summer.
As of today, we are officially at 1,007 days since we began seeking a diagnosis and/or explanation into Greyson’s medical issues. This feels like a lifetime, and we aren’t even close to the finish line. I used to believe that we would have an answer after seeing a few specialists, but it seems like the more specialists we see, the more problems the doctors discover. My personal goal for this year is to stop obsessing over the idea that we will get an answer. This doesn’t mean I am giving up on finding one, but I am slowly coming to the realization that we may never really know all of the answers, and I can’t let it consume me. That’s just something I’m working on accepting.