Tag: batten disease

The triplets are taking a bike class at a recent Rec center all week. I didn’t know it was there, about 2 blocks from where Rachel was in school. I have to drive past it 20 times this week. She isn’t inside in a classroom, waiting for donuts or me to bring her something. She isn’t anywhere. My mind still lives in escape mode, that she is alive, she will just be back later. Passing buildings where she might be existing inside and return from “later” tears open my mind’s game and rips me back into reality. The worst feeling I’ve ever felt. I hate this life. The only escape is sleep and alcohol.

It’s amazing and terrifying the difference a year makes. 2017 2016 is at the top. Another Batten family sent us free tickets again this year and the boys were so excited to go.  I am very grateful for kind gestures like these and swallow my grief so the boys can attend without pain or grief themselves.  Thank you Kristine! <3

It’s easier said than done.  Having your child die. For years I could speak about having a terminally ill child quite easily as I had clearly removed myself from what that really meant.  I sit here next to a box of ashes that holds the true meaning of “terminally ill” and I am frozen. After she was diagnosed with Juvenile Batten Disease I set out on many road trips to take her and my other 3 kids places, while we could.  Making the most of life, making loads of awesome memories.  On every road trip, as the kids were listening to books on tapes or watching a movie, my mind would always wander and I would think long and hard about what I wanted to do to celebrate her life when the time came. My rule, without question, was to spread her ashes within 48 hours. I have had her ashes for a week. They sit next to me while I work, sit in my lap while I stare at the wall from the couch and they either lay next to me in bed or on the table next to where I sleep. 48 hours is long since gone and(read the rest)

It’s crazy.  A positive pregnancy test turns into an ultrasound with a fetus.  Soon followed by kicks then a screaming baby.  Hopes and dreams for the future.  Milestones met.  First words, walking, running.  Getting into everything. Difficult times in school.  ADD. Autism.  Encopresis. Blindness Batten Disease Every possible hope and dream. My child.  Erased.  Literally turned into ashes.

Apparently, death is a big business, I kind of already knew this as my sister in law died when Rachel was only a few months old.  Rachel’s body will be cremated on the 19th and her ashes ready a week after.  I’m not sure what the kids and I want to do to celebrate her life.  Maybe something just us, maybe go back to Hull. It is a pretty emotional time.  To be honest I went to get the mail today and found a condolences card.  I thought to myself about those t-shirts you can buy for your friends on vacation that say something like “My Mum went to London and all I got was this lousy t-shirt.”  That turned into my kid just died and all I got was a card.  I just want my kid back.  Healthy. The loss is barely just touching me, I can’t process that she has died and probably won’t be able to until after I have her ashes back. The loss is barely just touching me, I can’t process that she has died and probably won’t be able to until after I have her ashes back.  We have had a vacation to Moab(read the rest)

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!

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

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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