Saturday, August 31, 2013

The gooey center

I realize that when I give updates on Tourette’s related stuff, it sounds pretty doom and gloom. Let me be very clear. It ain’t that dire. If Tourette’s is the hard outer shell, the rest of our lives is the ooey, gooey delicious center that is always worth the trouble.

We are a ridiculously happy family, and TS shit really only takes up a tiny portion of our lives. Yes, it’s always there in our face, and it adds challenges on a daily basis. Despite this, or maybe even in tiny part because of this, we are as close as 3 people can be. We are a team, and not one person in this family feels they ever have to face anything alone. 

We are fortunate enough to live in a place of incredible beauty and opportunity. Perrin is learning through life near one of the most fascinating cities in the country. He and I are privileged enough to go to the museums in Chicago frequently, and I get to see the excitement on his face every time he stands inside a vortex, watches the sun pop out in 3D, touches a stingray, gets to pretend to drive a real submarine, and jumps in the waves in Lake Michigan.

Summer 2013 029

Summer 2013 021

Spring 2013 021

We got to take an adventurous vacation this summer where Perrin and I rode horses for the first time

Summer 2013 011

Relax in the lake and let all the worries of the real world wash away as we spend time together as a family

Summer 2013 085

Summer 2013 081 - Copy

Perrin has the best group of friends a kid could have who love and accept him. We belong to the coolest homeschool group ever. We have a community where we fit even when we don’t fit. The bubble doesn’t exist anymore.

I have these guys. The absolute raddest group of ragamuffins a girl could ask for. They make my life unimaginably fun, and they’ve never been embarrassed to be seen in public with any of us. Tics, tattoos, old lady glasses, full on meltdowns. Nothing is too much for them to handle. At least so far :)

Summer 2013 038

We have a family that understands and supports us. Who will always be there if we need  anything. No matter what.

And above all, we have this


Summer 2013 017

When many marriages struggle to stay strong with the added pressure of raising a child with special needs, John and I have never wavered in our disgusting love and devotion to each other. I have a true partner, who comes home from work early because he knows I’m falling apart, who encourages me to go out with my friends or fly to Austin for a sister weekend. Who still brings me flowers, chocolate, and the booze I like just because he thinks I’m awesome.

So, really, when you get right down to it, Tourette’s is the blip on our radar that is annoying but not catastrophic. There is no impending emergency. Our child is happy, healthy, and amazing. We are all in this together.  Is there really anything else that matters?

No comments:

Post a Comment