The merry go round that is my life seems to be spinning faster these days. John moved to Denver on Friday and is staying with us for 10 days. It is pretty interesting to have him in my home after so many months apart and so many bad feelings between us. This is for the kids and hopefully we will be able to be somewhat nice to each other for them.
The boys are super close and Julie has been struggling with feeling left out. She has a sister but not the sister she needs and its hard for a child (10 years old) to deal with the emotions surrounding watching your sister die. Some kids are remarkable with special needs kids but I can only imagine how hard it is for Julie. She is such a huge help with getting Rachel in and out of the wheelchair van. Julie does this for me and it is her biggest contribution in helping with Rachel. I tell her everyday “I don’t know what I would do without you” and that statement is very true.
Rachel is very much getting worse. She is in a good routine between her Teacher Jane at school, with 2 paraprofessional’s named Sam, her bus monitor (Casey) and respite at Megan’s Place with Bryan and Kristin. Tonight when we picked her up at respite she was noticeably neurologically affected by her disease, more than normal. Her drooling was excessive despite the transdermal scopalamine patches she has to reduce her saliva secretions, her walking was only somewhat weight bearing and she kept falling forward and back with no trunk control. I got her into bed and she nearly threw her pills up because she was unable to swallow. We pushed through and she is sleeping soundly.
Life is moving along. It is a living nightmare but I feel that I am making the most of it. Some days I want to crawl in a hole and die but how can you not feel like that (sometimes) when helplessly watching your child succumb to the most brutal neurological disease. Just for a day I wish I could have my Rachel back. Just one day as a normal 14 year old. Just one fucking day. The work to take care of her is substantial but it is the front row seat of a slow death that is the absolute worst.
I get jealous of the people who believe in God and have that comfort but it is not a possibility for me. Science is my “religion” and tonight I hate science.