It’s been awhile. Instead of catching up on all that’s gone on, I am just going to jump into today.

A few weeks ago I met with a photographer to go over the images she took of our family. Somehow 4 years had gone by and I wanted updated pictures of the family to hang. I am a fairly decisive person so going through the poses didn’t take long. There was a picture of Chloe playing her cello that I loved and a great picture of Jared and Claire.

Then I was stopped in my tracks. There was one picture that Claire looked amazing in, but I didn’t love any of the rest of us. I wouldn’t hang this in the house. That’s when the thought hit me like a ton of bricks.

What if she dies soon, this would be great for her funeral. But I didn’t want to buy an image just to keep on the hard drive should we come to that place in time.

I mean. Who even thinks that?

I do.

I try not to. But sometimes I just can’t stop the thoughts. Seizures and Rett Syndrome are no joke. We make light of it and spend a lot of time at Disneyland and post pictures of her smiling, because she brings an amazing light to the world. When seizures hit we pause for as long as it takes and those can be some very scary times that are hard to shake.

I am going to keep shaking them.

That’s actually why I am sharing this with you. Maybe you have these thoughts about your child and you needed to hear that you aren’t alone. Maybe you just love Claire and her smile makes your day.

Anyway, I am not saving the picture any longer. I am sharing it with you, but I wanted you to know the whole story, just in case you saw it and thought, that looks like a happy family. Don’t worry, we are a crazy sort of normal family.

Photo credit to Sharisse Rowan