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.
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.
I haven’t blogged in forever and I owe myself an apology. I need this blog. For posterity’s sake (my memory is shot) and to get my feelings out. Feelings. I sound like such a bitch. Feelings. FML.
I texted my landlord in December to see if she had any larger homes for rent and within a few weeks I was starting to move my kids and all of our crap to a new home in Northeast Denver. Continue reading “2016 is here and so are we” »
Rachel decided it was time. She was ready to hold “Rosie” the Tarantula that lives at the Butterfly Pavilion in Westminster, Colorado. They have dozens of Rosies to swap in and out throughout a typical day and this Rosie was presumed to be about 10 years old. Continue reading “Rachel conquers her fear of Spiders!” »
I put my three younger children into public school for the last 7 weeks of school as I have been taking a “Nursing Assistant” course for Rachel. Both school and the course ended on the same day and I’m catching up on work. I need to apply for and pass the state exam, hopefully I will get an appointment quickly. Continue reading “School is out for the summer” »
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.” »