Thursday, May 30, 2013

PWS Awareness Day #30: Reflection - Part II

Yesterday was the past, today is the present.

Our days revolve around food. Always thinking ahead about when Dean will need to eat, when food might pop up at school, home, or social gatherings, trying to stick to the low-carb, medium-protein, high-fat diet that is so helpful for people with PWS. With the other two boys, I'll admit letting an extra sweet or the 49th carb serving of the day to slide because, whatever, they're boys, it's not horrible for them, life isn't perfect all the time. But for Dean? There's not much room for sliding. We recently figured out that reducing his whole gluten-free waffle at breakfast to half a waffle (even while keeping the rest of breakfast the same) makes the difference between Dean seeming like you stuffed a giant cotton ball between his ears and him having a sparkle in his eyes that says all circuits are up and running in his brain. Whodathunkit?

I used to love food. I mean, I had serious issues with food for many years, but for the most part, I love it. I'm Italian and eating is a way of life. But with all the planning that goes into the PWS way of life, I'm wishing more each day that people were just like snakes who had to be fed only every other week. And Dean hasn't even hit the hunger stage yet...

The medical issues, when Dean is not sick, are pretty commonplace. Each new one is a wave that crests over your head and knocks you down before you even knew what happened. But then you come to the surface, assess the situation, and respond. Sometimes the "new normal" becomes so much the case that we forget that others aren't living in the same universe.

When Dean is sick, it's frightening. Respiratory issues can set in and with people with PWS not always presenting the same way as typical people do with the same illness (sometimes they are almost completely asymptomatic until it's BAD), it's hard to know what's really going on. We have a whole regimen that gets set in motion when Dean gets sick.

And then there's the good stuff. While almost everything Dean does is harder than for others his age, the victories are all the sweeter. I posted yesterday about how Dean finally was able to tell me "I love you" after 4 years. The moment had a weight to it beyond the "aww" when I first heard Cole or Emmett say it at a much younger age. I'll remember that it was May 29, 2013.

It may take a village to raise a child, but it takes a village just to keep a child with PWS *alive.* Truly. We are beyond thankful (and amazed!) at how many family members, friends, therapists, doctors, and teachers we have in Dean's corner. And our corner. Dean has two awesome brothers who only see him as Dean and adjust to his needs without even being asked to (when they're not just acting like brothers and are all clobbering each other :)). I've learned that asking for help is not a sign of weakness, moving at a slower pace is often healthy and necessary, and that there's no use holding a grudge. Although I hate PWS, I am so thankful for our boy who walks an uphill battle every day with a dimple-filled smile on his face. He puts up with so much crap and rarely feels sorry for himself. He gets mad just like anyone else, and then in a moment's notice, he's over it; grudge is forgotten. More people to hug, more books to read, more things to learn, more life to live. Thank you, Deano.

1 comment:

Janet Gulley said...

Absolutely perfect. (Just like Deano)