stay or go

One of the hardest things for me with Lexi's disability is the isolation that comes with her fragility. It is hard to take her out in public. Over the years she has pooped and puked, screamed and convulsed in front of others. She has choked and almost always sounds like she isn't able to breathe very well. It's probably not surprising that once Lexi turned 3 or so, strangers stopped really knowing how to handle this.

We get a lot of stares and awkward comments. It feels like we are always on display. When Lexi was a baby I went to a Cerebral Palsy conference and one of the speakers talked about the difficulties of taking your kids with CP out and about when they are older. It was a lesson on the extra work involved to get out the door and how to be prepared for anything. The conclusion was that it's worth it in the end because the child loves it.

That's where it's different for us with Lexi. She is miserable more often than not when we take her places. She has anxiety and likes most to be home with her heated blanket and cozy chair. She has physical pain and can only tolerate her wheelchair for so long. It's very difficult to enjoy outings knowing she is uncomfortable.

Even though she has so many bad days at home it feels more manageable because all her equipment is here and we don't have people watching us. We still try to have family outings because it's hard for me to accept an existence for her that is only home and doctors appointments even if that's easiest for her. These are not often and rarely fun for me and Daniel but the boys seem oblivious to the stress so that is good. By oblivious I mean that they still act our and are their normal selves. They don't cut us any slack because Lexi is throwing up or turning blue. I think that's healthy but it's also overwhelming.

This is my favorite picture of Lexi. We went as a family to the tulip festival. Chase was a baby and having a rough day so he cried a lot. It was not wheelchair accessible which meant Lexi was getting bounced all over the place. She was pretty cranky about half the time. We went there for the pictures so we set her in front of the flowers and Daniel gave her some big kisses and I happened to catch this magic moment. There were a few other good ones and about 20 others that I deleted that showed the reality of how unhappy she was. But this one is perfect because in it I see the most beautiful little girl who knows she is loved.