Almost a month ago I posted a request asking folks to send musical birthday cards for Rachel’s 15th birthday. Our family has experienced the power of social media and the internet. Last fall I posted a “Go Fund Me” seeking donations to help me purchase a wheelchair van as Batten Disease is taking Rachel’s ability to walk. I was able to buy “Cartman” the low mileage wheelchair van at a very low price within a few weeks. People are incredibly generous and kind. Continue reading “And the birthday cards for Rachel came flooding in” »
Not the best pictures (too many pictures to edit!!!!) but they’ll do! <3 Thank you so much to Sue for having us over yet again, being super generous and awesome and drinking margaritas with me at 10am. <3 Continue reading “Easter 2015” »
I am pretty sure this video was taken at summer school in 2010. Massachusetts Basksetball State Championship Coach and Special Education Teacher, Liz Londergan took the time to show my blind daughter Rachel how to shoot hoops and Rachel sunk one!
Last night Rachel and other students at Fletcher Miller School were honored by having their art featured in a show in the Corner Gallery at the Lakewood Cultural Center. I have a lot of respect for her art teacher, Jenni, as you really have to think outside of the box to teach a blind person to create art beyond finger paints, wikki sticks and tactile stickers. I’m really proud of both Rachel and her teacher and going to the show was a very sunny moment for me. I tried to take her picture with her art and her certificate but she, much like her mother, was a bit of a shit about it. LOL.
We also took a look (those of us that can see) at an artist, Chris Kreig, who had a really cool “BIG” exhibit, I put in a couple of his pieces with Julie posing at the bottom.
I’ve asked my kiddos to write today about what they are thankful for. This is a common theme in America in November that I think is total crap. Many of us are selfish and take life and health and love for granted throughout the year.
Boston and London realized last night that there are website statistics which compare their posts in views and comments. They asked me to assign them a topic which will hopefully get them the most post views so I had them jump on the “Thankful for” posts.
I was thankful earlier today for having the common sense to record this video on our make a wish trip back in 2009. Watching it feels like I am being split open and all of the happy is being shopped vac’d out of me but I’m glad to be able to see what my girl was like before this fucking disease activated inside of her.
She really enjoyed the long weekend visit with my Mom. I was sure that she was going to be nasty to me this week after my Mom left but I was pleasantly surprised (and wrong). Truthfully I think that is another sign of her cognitive loss. I knew the decline was coming, it is always coming and coming and coming. Her ability to walk is nearly non-existent but I was born to be somewhat of a “brick shithouse” so I have no problem maneuvering her. The order for a hoyer lift is in as well as a new air mattress and an inflatable bed bath for her hair. Continue reading “Rachel update” »
This year Rachel dressed up as a pirate, Julie was a midwife, London was Captain America and Boston Iron Man. We had a great day and was able to attend a few high school sponsored trick-or-treating events and also went to Rachel’s school for a halloween parade. Continue reading “Halloween 2014” »
Rachel is getting worse, much more difficult to physically manage and cognitively she can’t be held accountable for half of the things she does.
Continue reading “Rachel needs a wheelchair van” »
So my name is Kat (Kate) and I have four children. My oldest is Rachel. She is 14, blind, developmentally disabled and can’t eat, toilet, bathe or do very much on her own. She is unable to maintain her temperature on her own and is having a harder time walking and will yell multiple times throughout the day until you figure out what she wants to get her needs met. Continue reading “A long, hard, look in the mirror.” »
Taken August 2007. I miss this. This girl is still in my daughter but the disease is taking over. I took Rachel to see a primary care doctor here in Denver and she is willing to treat Rachel both as a person and a person with a neurological disorder. This is a big weight off of my shoulders. As she is still having breakthrough bleeding despite the pill and extra estrogen I decided to try her on the depo shot and so far so good. She weighed 186 at the doctor and I am still getting her in and out of the bath with minimal help from her. As long as I can physically care for her I am keeping her endlessly chatty, yelling, hungry, sometimes irritable self at home (which is still an airstream – so cool).
I hate what this disease is doing. I absolutely hate it. Taking her abilities and making it hard to do things as a single-parent family. I won’t give up but unfortunately, Batten Disease doesn’t give up, either. My arms hurt from my muscles ripping to grow larger as her muscles give out more and more each week. Being built like a brick shit house has its advantages that I never dreamed of.
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. Continue reading “Rachel update July 2014” »
My last post was about following my gut and taking Rachel out of her residential school, which I did. Tonight I will briefly write about the last few weeks and the immediate future. Continue reading “On that note” »
Rachel completed her first week at Massachusetts Hospital School. Tuesday was a long admission process and she stayed at school until Friday night. The school receives students (patients) on Sunday afternoon and sends the kids home on Friday afternoon. The activities they offer to their student population cannot be compared at any other facility that I have ever heard of (swimming, horseback riding, water sports, bowling, cooking, music, PT, OT, ST, TVI and the list goes on… WOW!). Over 90% of students are in wheelchairs and Rachel attended summer camp at the school.
The first week was hard on Rachel but Meredith and I visited her Thursday night for the monthly themed dinner (event) to check up on her and help her feel more grounded. As difficult as it was on her with her blindness and dementia, she did not get upset when I put her on the van today (Sunday) to return to school.
Rachel has a 1:1 person with her from the start of school until 9pm and it turns out that Gina (her 1:1 from public school) has been assigned to work with Rachel during the school week!! This made for a much easier transition on Rachel (and me).
This is not the best picture but I took it of her on Thursday night after I had tucked her into bed. She doesn’t have a roomate (yet) and is quite pleased that the TV in her room has Sprouts (her favorite channel).
Friends from all over the country wore their jeans to support Rachel for National Rare Disease Day. The idea is that you wear jeans to show support of rare genetic diseases because the disease is in our genes. I asked all of my friends and family (well, any of them on facebook) to tell at least 5 people about Batten Disease and my Rachel. Here are the ladies and gents who wore jeans for genes!
Me (Rachel’s Mom)
The Brightson Family