Sunday, March 29, 2015

Community, Neighborhood, Family

This past week we had a wonderful time with some of our "PWS family." It is frustrating that the reason I know so many people now all over the US and even in other countries is because of the common bond of having children with Prader-Willi Sydrome. However, the bond is sort of undeniable.

Imagine the chat's you have with other parents about everything from recipes to bedtimes to milestone to potty training. Now, imagine that you have no one in your community who's child operates like yours. Of course you still like to chat and you strive to include these conversations to keep up your needed connection to friends, but the conversations really don't apply. (and often make your heart hurt as you realize how far you have yet to go)

You have questions about PT, OT, ST and want to discuss AFO's vs SMO's. You wonder how to make decisions about things as basic as what and how much to feed your sweet child.

Add to that being told by the 'experts' in the beginning as your child was still just a sweet, quiet, sleepy infant that they would never be able to hang with typical kids and would struggle with a giant list of hard challenges. Then finding hope in new doctors and a group of friends who are fighting along with you to change that prediction. We cheer for each others children and we hurt with the families who's kids are struggling despite all they are doing. There is still much work to be done.

So our families - ones affected by PWS - become a tight knit community, just like a neighborhood of old and many like family. Well part of our neighborhood came to visit from Indiana. It was perfectly comfortable and wonderful to have them stay a couple days with us. How do we know them? Well, I met up with them once on our way to Chicago last summer so Ayden Jane could play at a playground and T and I could chat for an hour or so. Oh, and we met up at the conference last summer. Yep, of course the next step was to have the entire family stay a few days in our home. It sounds crazy!

We had a wonderful time. We went to the SC aquarium and the beach and the kids played like they had been cousins or something their whole lives. I think it was nice for them to to have friends around who live the same way around food. Who find almond milk and keto candies and coconut bars and nuts for snacks perfectly normal. Friends who are not phased by nightly shots or daily supplements. Other kids who automatically say "fix your legs" when little ones sit in W sit, who have the learned ability to safely play with siblings who's tone is low and body awareness sometimes non existent. No explanations necessary.

So nice for the parents to be able to just talk openly about our every day stuff. Share recipes and therapy ideas and milestones and challenges on common ground. Wonderful to be able to talk about research and medical stuff like it is typical dinner conversation.

It is certainly a unique neighborhood, but I'd say this is the best part of having a child with PWS. Gaining a whole new neighborhood that is filled with wonderful people you would have never met any other way; getting close enough to many of these PWS neighbors to truly feel like family.

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