Since she died and even before, Tuesdays are my hardest day of the week.  It is the one day of the week that the triplets are in their homeschooling enrichment program.  A day that I am without children to keep me distracted.  Today was pretty hard, I have been feeling pretty terrible since Rachel died and I forced myself to take a 3-mile walk to distract myself during what I will call “lunch”.

I only started to feel better after the kids came home.

I’m pushing through.  Next week is their last Tuesday at school before the summer. Todd and I are taking them sandwiches and will be joining the school’s “last day” picnic. I can’t believe next week will mean they head into 5th, 6th, and 8th grade.  It’s crazy how time flies. Rachel, if not for Batten Disease, would be going into her senior year next year.  Is that even possible?

Rachel, if not for Batten Disease, would be going into her senior year next year.  Is that even possible?

Is that even possible?

Still waiting on the necklaces to arrive via UPS.

As a distraction, my mind has been thinking of tiny houses and yurts. I love the yurt pictured at the top of this post.

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 I can’t seem to part with her.  I’m a very pragmatic person but I guess the Mum in me has beat out the pragmatic side of me because I still can’t bring myself to let her ashes go.  I have gone on amazon and looked at urn necklaces and have purchased two of them.  They’re quite inexpensive, in comparison to how much an urn costs at a funeral home.  I think Julie would like one also and I think she is old enough to carry it around with her, emotionally.  She has had to live through this right along side me.

Here are the two necklaces that I have found and purchased so far (pics from amazon.com):

Tree of Life

(I think Julie will like this one):

Butterfly

I like this one.  When she was definitely dying I told her many times that it was ok to fly away like a butterfly. My friend, Anna, was right there with me and has a new butterfly tattoo in Rachel’s memory.  If this butterfly necklace does not suck I will get one for Anna also.  Friends like her don’t come around very often.

Well.  What do you think?

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, Utah planned for several months now and we leave on the 22nd.  If I could get the money back (VRBO), I probably would.  It doesn’t feel like the right time to be on a vacation and I am not looking forward to it.  I kind of just want to stay on the couch for forever.

When we get home it will be May and Rachel’s birthday was May 18th.  My friend started a memorial fund for Rachel through Go Fund Me.  I think, once the kids are really ready to talk about it, we’ll do something on her birthday.  I just have to figure out WHAT. I think the WHEN is her birthday.

This still doesn’t feel real.

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

London and Boston, age 10.

It is definitely my favorite time of year, when both of my boys are the same age.  It lasts 10 days every year and I nearly forgot to take a picture of it.  Here are the boys, age 10…. <3

I like the seeds we planted.  I like the broccoli and carrots. My favorite thing was getting nachos on Wednesdays with Ms. Diana. My favorite classes are library and art. I like painting in art.  We have fun in school.

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 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.

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.

rachelb2

Uncle Clive feeding Rachel his homemade apple pie.

Rachel with twin cooked lobsters on her shoulders. Her shirt was a gift from her granny and it says "Keep calm and eat lobster."

Rachel with twin cooked lobsters on her shoulders. Her shirt was a gift from her granny and it says “Keep calm and eat lobster.”

Rachel with her OLDest cousin, Sarah!

Rachel with her OLDest cousin, Sarah!

Rachel with Granny and cousin Haley.

Rachel with Granny and cousin Haley.

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.

Rachel with her awesome bus monitor, Sandra (from Brazil). <3

Rachel with her awesome bus monitor, Sandra (from Brazil). <3

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 trying to mail her books on tape for the blind

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.

debt graphic

I’m up to my eyes in debt since my x ran off to find himself. It literally makes me want to die and I don’t know what to do. I’ve spent the last year living off of credit cards just to support my family. It makes me feel sick on the daily and I lose a lot of sleep over this every week.

Ready to live on cash and need to find a way to start chipping away at this mountain before it crushes me. Where do I begin?

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.

Sweet Sixteen.  I keep seeing that sentiment in cards and online messages.  For Rachel, it was a very good birthday.  She woke up to gifts and cards from all over the world, hot muffins.  Lunch at school came with pizza delivered by me, Todd, Julie and London.  Dinner was more pizza and cake and we invited her father to join us.  More presents, more cards and the phone calls came rolling in.

For me, her Mom, it was a bittersweet birthday.  She was supposed to get her driver’s license.  Being able to drive was a HUGE deal for me and I look forward to all of my kids driving and putting together their first car.  Rachel will never have the life she deserves and her birthday is hard for me.  I put on my brave face as much as I could but especially while she was around.

Here are pictures from May 18, 2016, her “Sweet” Sixteenth Birthday:

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