Last week we started the project of tailoring our new home to our needs. There was lots of destruction. All the flooring was removed along with the fireplace and two of the bathrooms were gutted. Each day there was new decisions, paint, tile, fixtures. It was stressful but not in a “is my child going to breathe again” sort of way that I am used to. It was a fabulous escape for my mind. Saturday Claire had respit so Jared and I got to be at the new place together working on things. Even tired and overwhelmed we laughed and had fun. That night I got to take Chloe out to a concert, life felt so normal.
I didn’t have to be there during the hella long seizure that she had at respit or the one that she had that night. Jared bathed her and fed her on Sunday in an effort to let me breath and it was amazing. There was just one problem, I couldn’t hide forever, I had to go back to Rettland.
It was as I returned that I broke. I didn’t want to talk about the upcoming IEP and the silly restrictions that prevent what I think is best for Claire. After that wave washed over me I figured out that I would be up in an airplane in exactly 2 weeks, headed to Boston for the trial. Before then we have to move into our home, that at the moment doesn’t have a flooring, a working bathroom and also features what Chloe refers to as an “open house”, large holes in the floor that can be used to climb underneath.
As all the details swirled in my head I wished that I didn’t have to take Claire to Boston or renovate a house to make it accessible to her. I didn’t want to think about the IEP next week or the hours I had to spend driving her to therapy. I just wanted my typical little Claire and she was nowhere to be found. I doubted that any of this would help or was worth it. I wanted to quit.
But I couldn’t. Being enrolled in the trial means keeping her therapy consistent so we had to go and I am so glad we did. It was cool and cloudy and the smell of the dust in and the grass with just a few drops of rain was amazing. As we got there Claire lit up for the first time in 5 days. She was able to do work up on the horse that she hadn’t been able to do for a long time. I could see the wheels turning in her head as she focused when her pt asked her to drop her left shoulder, it was amazing. Afterward she beamed with joy and there it was, the why. The reminder of why I don’t leave Rettland for too long. I love it here. It’s not an easy place to live in and I am glad to have you here with me. Between the company and scenery there isn’t a better place to be.