You know that relief you feel for a few moments when the house is quiet? When you lay down in bed and take in the darkness after a long day?

I rarely ever feel those moments. In the last eight years my body has re-wired itself to be a lot happier when Alexis is in my sight. It’s probably not healthy for either of us.

For those of you with typically developing kids, imagine not letting go of your child for the first five years of their life. Moving them, balancing them, feeding them, bathing them. That’s me. That’s Brandon. That is anyone with a child who has physical disabilities. Most every thought is a double-check for safety and needs that we will have to adapt to in whatever environment we are in. 

As Alexis gets older, we work to give her more independence. It’s a fine line between doing something by herself and her not getting hurt. Brandon and I worry not just about her getting injured, but her causing someone else to fall and get hurt. Everyday when we drop her off at school it is a mixed bag of emotions. I’m happy to have her do something normal. I’m sad she can’t do everything that her peers do. I’m glad to have the time to work. I feel like I should be doing more to help her. She’s in 3rd grade and this happens every day…that is how deep this runs.

So this week, while she is on spring break, it will cause more chaos around home and make it harder to work. However, it will be less stressful to know that she is close.

I have a lot of things I don’t like about brain injury, but this is a big one for me. I hate having to be so aware all of the time. I hate having to mentally make a choice to step away or turn around and then hear her fall. I hate that I can’t ever sit back and just watch her be her without having someone or something attached to her.

So, I just feel better when she is beside me.

 Read more about the terrible day that Alexis was shaken, the results of the trial and the incredible determination and bravery from her parents.