Tag: rachel

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.

Rachel's Birthday

Tomorrow would be Rachel’s 17th birthday if she were alive.  It is going to be a really hard day for me.  I’ve posted an event on facebook asking folks to do something special for her birthday.  Try veganism, eat a cake, donate to a food pantry or animal shelter.  Something.  Here is a link to the event on facebook: https://www.facebook.com/events/116765288898308 I knew she was going to die but it never really sunk in until she did. Life is so short.

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)

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.

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.

Rachel Vontungeln 15

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.

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