rachel with batten disease starting 10th grade in denver

Rachel started 10th grade this week and is having a great time. She has a new teacher named Ms. Nicole and 3 bus drivers and aids! She is doing great and enjoying being back to school and I am having a bit of a break and Rachel having a break from me. Her walking is quite impossible, watching her fall apart has been killing me.  It’s emotionally hard, physically hard on me and on Rachel but her appetite is great and is enjoying her movies and iCarly. She is dying to meet Miranda Cosgrove and Jimmy Fallon.  Any suggestions for making this happen would be great!

Cure in the Nick of Time
jeep lift

Look no further.  They exist and are made by a company called Access Unlimited in New York. Now I have to win the lottery or sell a kidney.  I don’t think organ sales are legal? Here is a link to the pdf quote I got to have this made for our Jeep to suit Rachel. $6500 Not being able to do the things we used to do and go the places we used to be able to go is taking its toll on me and the kids. We have the van which was generously donated by our friends, family and wonderful strangers through GoFundMe but it’s 20 years old and not reliable enough to go long distances. Does anyone out there have one of these? What do you think? www.accessunlimited.com

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Back to school is exhausting, for me (and maybe not all parents with kids like mine) because of the nature of having a child with a degenerative disease. Talking about loss of abilities that came about during the summer… knowing this is one less school year I will have with her. Meeting your child’s new teacher for the first time today, who seems really nice and watching her not being able to understand your child. Knowing you won’t be there while your kid tries to get the words out. Hoping they’ll call you to translate… Near tears because they won’t text you with pictures and questions they way the teacher last year did. Oh how I wish I could be one of you, feeling sad when you start taking your kid on college tours, taking them to get their driver’s license, sending them in a limo to prom. Wishing they would stop growing up so fast. Growing up is what you WANT. Trust me. At registration (TODAY) I learned Rachel’s school day now starts much later than last year and her shorter day was moved from Thursday to Tuesdays. Let’s not talk about me sobbing at registration when I met her new teacher because I have no idea how I am going to get Rachel on the bus and get my kids to and from school on Tuesdays mornings now that they have the same start times and are 30 minutes away.   I also learned (TODAY) that they changed their school uniform colors. Fuck school uniforms. She is wearing tie dyes and her lu la roe leggings (because they make diaper changes easy), I’m not coughing up the $$ for new uniforms. I also learned (TODAY) that Rachel can’t wear red or blue because they are gang colors??!? WTF!!!!!!!!!!!!! I don’t GAF!!!!!!!! I also learned (TODAY) that she can’t wear her sunglasses (which she literally sleeps in because she gets headaches without them) for safety reasons?  Yes, my blind daughter, who can’t hold a mother fucking soda with a straw to her mouth, without her wrists shaking uncontrollably, is a terrorist. Just waiting for her moment to sneak an explosive into school. Did I mention she LOVES school? Aside from Granny’s house, school is her favorite place. <3 Why do school rules have to be so fucking homogenized? Photo: I took her to get a Dr. Pepper and (vegan) French Fries. That is the soda she can’t hold without shaking. And that is the smile on her face from meeting her new teacher. I’m not sure who the bigger asshole is… today. Public school rules or Batten Disease.

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We just got back from 12 days in Boston surrounded by loads of people who love us.  Here are some pictures of family with Rachel.

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This one is for Janet and Joe.  Thank you for sending Rachel a gift card to Cheesecake Factory, she was so excited to take her Granny and Granddad.  Granddad took these pics and I am passing them along. <3

Rachel with her brother, Boston) and Ruby her bus driver.

I finally worked up the nerve (guts, balls) to ask Rachel’s bus driver and monitor to take a picture with Rachel. Out of total manipulation I asked them on Rachel’s birthday and was successful. Below are Rachel with Sandra; the bus monitor who is originally from Brazil. And Boston with Rachel and Ruby; Rachel’s bus driver who is trying to teach Rachel (and me) a little Spanish and apparently does the best Mickey Mouse impression.

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In many places here in Denver we have community mailboxes. I like to call them mailbox trees (Rachel is photographed near one of the trees near our house). Within these plastic boxes, (yellow and blue) are small USB books on tape provided to her by the library of Congress. Audio books. Books on tape. They come in the mail, for free, and this library has extensive content for all ages. So imagine how ironic it is that these books are mailed, for free, to blind people all over the United States, yet the “outgoing” slot is too small to fit them. Are blind people supposed to drive to the post office? Just a morning WTF moment.

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For Rachel’s Birthday, my mother requested a “Feel Better Friend” through their website and organization based in Olathe, Kansas.  Here is Rachel with her friend who was hand made to look like Rachel.  So cool! Rachel turned 16 last week was diagnosed in 2009 with Juvenile Batten Disease, a very rare and progression brain disease which has caused her blindness, cognitive and speech loss as well as worsening memory and swallowing issues.

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  I wanted to get pictures of her driver, Ruby and bus monitor, Sandra, but I didn’t have the nerve. Ruby is shy and I’ve been working on her since January to talk and it’s been working! It’s was probably torture for her, the beginning, but I believe I’m tolerated now. She’s sweet as pie and puts up with my crazy. smile emoticon. Her husband is a huge Red Sox fan so I knew she needed me as her friend. lol I promise to ask for their pictures before the end of the year. ?? And that school bus? It was brand sprawling new for Rachel to start school at the beginning of this year!!