I spent a lot of time in the car yesterday driving. Driving to see the kids new school (which is on the other side of Denver) driving Rachel to respite (and back. Twice.) and running a bunch of errands.
When I got home from running my errands I found that my friend’s husband, who will probably kick my ass for not referring to him as my friend (which he totally is but we don’t admit it, or hug lol), had built Rachel this:
My parents, with the help of my brother, built something similar for Rachel back in Massachusetts so Rachel could enter my parents home. I never expressed my thanks because it’s too painful to realize that that is her future. Yes it is inevitable that she is completely losing the ability to walk but sometimes I just can’t face it.
So for what its worth: Thank youRead More
The weeks after the road race have been super busy for Rachel, me and her siblings. Rachel finished up her home schooling with several weeks of seeing Anneliese the awesome TVI (Teacher of the Visually Impaired) at our home and baking. Once school was out I loaded up the kids, pets and the Airstream and we drove out to Colorado. Rachel had a hard time over the 4 day journey as it was very disorienting for her but once we arrived she has been doing much better. I sent her IEP (education plan) to the school district here and they started her in summer school the Monday after we got here. She likes going to school as much as she ever has (says she hates it but has a good time when she is there). A huge difference for me was putting her on a big yellow school bus when I am used to putting her on a 13 passenger van.
I have been making her walk everywhere but I let her use the wheelchair to go to school with for her safety. Yesterday she went 4 wheeling which tired her out from having to keep her core balanced. She also went pee in the woods! This morning she slept in until nearly 10am so I know she had a work out. She is definitely losing her ability to walk but I am trying to fight it as much as possible. Soon I will let her sit (she wants to just about always) but for now, while I think its in her best interest she is stuck with me and walking.
Here are a few recent pictures:
I’m watching Rachel stuff herself a few feet from me with some pancake donut holes that you can buy at Trader Joes. It’s a Tuesday morning at 8:40 and my triplets (my other three children who are unaffected by this disease (I call them the triplets) are all at school. A little over a month ago I sent Rachel off to a new residential school and we lasted a month. They offer some amazing activities there for kids who have a wide range of disabilities and I highly recommend the place.
But the place just wasn’t for us.
She’s home for now while we figure out the next step. If the decision were hers she would return to the Middle School she was attending but we have to consider another option as well before she (hopefully) gets to return to her old school. She is sitting in her recliner under an electric blanket and listening to Sesame Street on Sprouts. Happy as a clam. I followed my gut and I’m happy about my decision to bring her home.
My favorite part about her being home? She is walking up and down the stairs and sleeping in her old bunk bed in her old room with her little sister, Julie.Read More
Its 10:51 on Monday night and I haven’t been able to shake how much I miss Rachel since I shipped her off on the van yesterday afternoon at 4:00pm. I pushed for her to go to this school (she has never wanted to leave home) and now I can’t stop missing her.
I have some big decisions to make. I have an appointment tomorrow with the Pediatrician on staff at her new school to go over the MOLST form. Grab a box of tissues and imagine filling it out for your formerly healthy baby girl:
I want to pick her up and bring her home. The last day has been the hardest since she left. I left a voicemail for school at 7:20 tonight for her to call me but no luck. I will definitely be bumping into her tomorrow. She drives me crazy but I love the shit out of her. I usually get upset and just want my healthy daughter back but the last 48 hours has kind of been me realizing that I will take any version of her because sooner rather than later there will be NO version of her to have back.
This disease is relentless.
Rachel’s new school is full of people just like me and just like you with feelings, hopes, laughs and tears. Young people who have been admitted to the school because they were born with (most) a disability or acquired one along the way like my Rachel. I know that some of the kids there will probably attend the school until age 22 and will transition into the mainstream world. I also know that due to privacy the staff is unable to divulge medical information to the other children about Rachel or her fate. When I am visiting, different kids will strike up a conversation and I have started to tell them things about Rachel. That she was totally normal and healthy, reminding them (especially the boys) that she is only 13, that she is blind.
Last night I told two of the other students that Rachel is terminal and the name of her disease (Batten Disease) so that they could read more about Rachel.
There is a boy at her school who is truly amazing. He can maneuver his iPad with his feet faster than I can with my fingers. He took a liking to Rachel over the summer when she was in summer camp at her new school and I have reminded him, specifically, that she is only 13 and a MINOR. :-) Last night at the theme dinner I told him about her disease and that she is terminal. I also told him about her website that you are reading right now.
I think its only fair that the kids who care about her know that the Rachel you see today is not the Rachel that will be in a few years (and not the Rachel that I knew when a few years ago). It is heartbreaking, but only fair to let the other students who are cognitively capable of grasping her disease know what is to come.
Reality sucks but I’d rather be a realist. Living an honest, pragmatic life has made living with this stupid disease much more bearable for me. The picture is from dinner last night. I had to threaten her to get a smile because she was so busy letting me stuff her face with mashed potatoes, gravy and chicken. <3Read More