Monday, April 15, 2019

Day 8. Year 2019

     I think I see a trend here. Weekends have been really hard for me to post. Sorry! Sometimes I find it hard to create a balance. Ok, most of the time I find it hard to create a balance, I find myself more often than not on a teeter-totter, at one extreme or the other. It's darn hard to get that thing right in the middle, ever. I find that to be true with my kids too. Especially when one kid has such extreme and unique needs. This past weekend my teeter was most definitely focused on Ally. She had a final fitting and stage practice Friday night for her first go at modeling in a fashion show and walking the runway. Saturday was the fashion show near Newport News, followed by an early birthday dinner at Kobe, and yesterday was Ally's 14th birthday. So, we all revolved around Ally this weekend. Joe came home from college to celebrate with her too.

     Time and attention are two things that are very hard to balance. Kids have special events that require more time and attention at very specific times in their lives. So you jump into that and focus on that. Not many kids want to willingly share the spotlight for their special occasions, but there has to be some give and take all of the time. And for the most part, my kids give and take rather well. Joe's graduation - was about Joe. Vicki's 16th birthday- was about Vicki. Ally's Confirmation was about Ally. Joe's Eagle Scout Ceremony... Ally's NJHS induction.... you get the picture. One of the hardest things though is that for Vicki, a lot of the "special occasions" revolve around medical stuff. It stinks for both Vicki and the rest of the family. We try really hard to have other types of celebrations for Vicki, but the last few years have been very hard.

     That damn autism is a spoiled brat. It constantly thinks the world revolves around it. That all of the time and attention needs to be focused on it. Vicki's home 48 hour EEG - was about autism. Vicki's upcoming MRI - about autism. Vicki's GI cleanout - damn you autism and related conditions. Vicki's sleep study - enough already autism. We freakin' see you. Stop hogging the spotlight. Stop stealing the whole teeter-totter. Just stop it. I just want to put autism in a time out. But there is no time out from autism.

     If you look at the pictures I post though, you may think, hey, I don't see autism in the picture. Everyone looks so happy. Look at everything they can do together. It doesn't seem that hard. But, believe me, it's there. I sometimes liken autism to a chameleon. Sometimes it blends in so well to the surrounding, you almost don't even see it. And we work really hard at that. We want you to see Vicki, not autism. The amount of behind the scenes works that it takes to get autism to blend in is absolutely mind-boggling to me. It overwhelms me. I can't imagine how it overwhelms Vicki.

     I'm going to cheat a little bit... and call this post done. I will write in more detail later about some of the ways autism was able to blend in this weekend with the help of so many people. I will also write about how it was not able to blend in at all. It's one of the hardest balancing acts we've ever had to do. But I believe as a family, we do ok. Actually, more than ok. Everyone gets their moments. And we all hold onto one another to balance. Sure, we fall off. But we dust ourselves off and get right back on. Much love to you all. xoxo

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