→BATTEN DISEASE

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.

No matter how many years you have to prepare, you’ll never be ready to say goodbye to your child. She deserved a better, real, life. I tried to make the most out of the life she had. She was my #1 pain in the ass and the feeling of emptiness she has left in our lives is greater than I could have imagined. As we move forward the kids and I have to try and find ways to fill in the void a little at a time. Thank you to everyone who has supported me, Rachel and my children through this. It definitely takes a village to live through some of the shit that life puts out. I booked a handicap accessible house in MOAB a few months ago and tomorrow we leave, without her. It feels wrong to go on holiday but it’s non-refundable and the condo has a pool. Swimming and sun will be good for the kids, getting out of this house will be good for me. 🙁

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)

People say “passed on” or “passed” or “gone to heaven.”  I don’t know where she is now, I don’t think we get that information in this life. Hopefully she is somewhere and sighted and walking and healthy. She passed away at 11:03pm on Saturday, April 8th.  In my arms, her hand held by my friend Anna. I feel tremendous relief for Rachel from this disease and relief for myself and her brothers and sister.  Batten Disease is no way to live and I stuck with my choices of DNR and no feeding tube without any hesitation or regrets. I’ll miss you.  She was my personal pain in the ass and I loved the shit out of her even when we drove each other nuts (she was 16, after all). <3

Yesterday was quite the day for me. Emotional, happy, sad. My youngest child, my second son, turned 10. It’s my favorite time of year because it starts ten full days of both my boys being the same age. Irish twins… I signed my divorce papers and my divorce has been filed, again, finally. This time should be successful and in 92 days I should officially, legally be Kat Wasabi.  This divorce has been several years in the works, in the beginning I wanted to keep it together for the kids and realized how stupid that is. So fucking stupid.

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

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(read the rest)

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