Tag: batten disease

It’s been 11 months to the day that Rachel went away. Well, closer to a year now that I let this blog post slip away and stay in draft mode. I’ve been talking a lot with the kids and having conversations in my mind about what I am doing with my life. What kind of Mom I am.

When Rachel was alive but getting worse because of Batten Disease, it became more difficult to leave the house. I was able to get her out of the house but it was really hard to accomplish and we could only go out for very short periods of time towards the end because of the bathroom and she couldn’t bear her own weight long enough to safely transfer from her wheelchair to the toilet. She didn’t really want to go many places because it was hard on her and loud.

In private moments away from Rachel (when she was in school) I would talk to the kids about what we would do when she was gone. It was a shit conversation to have with them. Knowing that their sick sister was holding them back from living life, knowing that I would one day be without my daughter. But I promised them that one day we would be able to go and DO THINGS. We are coming up on a year and I’ve started to fufill that promise.

It isn’t an easy task to get over the mental block of depression and anxiety that I seem to be left with. I shower, get dressed, have clients, a part time job and I take pretty good care of my kids. But something about getting dressed and LEAVING the house for reasons other than working at Amazon or buying food is really hard. I wish I knew why. This is the house where my daughter died. I hate it here and I definitely feel better once I am gone.

I’ve called this last (almost) year “The Gap Year.” A gap year is often how you describe the year after high school or college that young people take to find themselves before taking the next step of college, graduate school or getting a real job. In my case I need to get a real life. I don’t want to leave my dead daughter behind in this process and maybe that’s why I have been tied to this house. Before she got really “sick” and affected by Batten Disease we used to go places, take road trips, visit amusement parks and go to the movies. (Movies with a lot of dialogue so she could follow along).

I’ve started a small list of things I want to do and places I want to take the kids to see. But the gap year isn’t over yet and the weather still mostly sucks. If you have any suggestions for things to do this summer, please comment below.

It has been 347 days since she died. It is so hard to believe.

The featured image is the kids on St. Patrick’s day. Green sprite.

Last night was a disaster.

I work at an Amazon warehouse about 28 hours a week at night / on the weekends. Lots of deaf people work there and in order to help the deaf and the hearing communicate, Amazon periodically offers (optional) basic sign language classes.

I went to my first class last night. The teacher and interpreter come in, both awesome and friendly.

What are the odds that the teacher’s name is Rachel, the same name as my dead daughter? I fought back tears the whole class, tried everything I could think of to hold it together. Seeing her sign the letters for R a c h e l repeatedly, knowing my daughter could never have learned to sign because she went blind. It was too much.

I am so upset that I couldn’t control my emotions, in public, for the first time since she died.

I am angry that my grief is public and I feel exposed.

My grief life and my fake work life have intersected. I want to quit.

I tried to cry it out in a bathroom stall but had to stop in order to clock in to start my shift. Standing in the time clock line, dozens of people saw me crying. Another grieving Mom dragged me into the bathroom and waited with me while I ugly cried. I stayed after the class and worked my shift.

I DESPISE how I feel when I cry in public. 3 more classes to go…

This is how I like to remember her…

The picture with 2 of her siblings (the little one wasn’t born yet) also features my brother, Clive.




Something I want to write down to remember, to put into words…

When Rachel died, a small part of me felt relief.  For me.  For her.  Some people who have a child die after a very long illness don’t feel this way and some won’t admit to feeling this way. But I felt a small piece of relief when she died.  I feel incredibly guilty for this feeling.  My daughter died after suffering for a long time.  It wasn’t, usually, painful for her.  But emotionally, she missed out on several good years of life.  Batten Disease robbed her of her sight, her ability to walk, function normally, her friends and her childhood.

It got harder and harder to take care of her.  Listening to her talking incessantly.  The diapers that followed.  She couldn’t leave the house, she didn’t really want to leave the house.  It was really hard on her.  Hard on me. Hard on her siblings.

There was definitely a strain on our relationship that grew more obvious to me as she got more affected by Batten Disease, as more of her brain cells died.  I am sure that part of my feeling of relief comes from the strain on our relationship.

This is the part I really want to write down:

When I look at Julie and see how smart and awesome she is and reflect on my relationship with Julie (and her brothers) it makes me realize how much this disease really robbed me of.  What it robbed Rachel of.

When I think of what it would be like to have a healthy, nearly 18 year old daughter, it brings me to my knees.

What would it be like?  It’s a daydream I try not to have very often because it’s a reality I will never know.

One that I would do anything to have.

I miss her so much.

Rachel Eileen

Rachel Eileen, Age 5.

I forgot it was picture day at Homeschool Enrichment and I’m on a budget so I didn’t buy any packages. I took these of the kids, quickly, as we were headed into school. The bottom picture is Rachel from a few years ago while we were waiting for the bus.

Julie

London

Boston

Rachel : 2014 or 2015

My cousin Zoe and her fiancé Glen went to Bushy Park in England to visit the tree where I spread most of Rachel’s ashes. This was over last weekend. Thank you for sharing guys.

Juvenile Batten disease is a fatal, genetic disorder of the central nervous system that begins in childhood. Early symptoms of this disorder appear between the ages of 5 and 10 years, when parents or physicians may notice a previously normal child has begun to develop vision problems or seizures. In some cases the early signs are subtle, taking the form of personality and behavior changes, slow learning, clumsiness, or stumbling. Over time, affected children suffer cognitive impairment, worsening seizures, and progressive loss of vision, motor skills and the abilities to eat and initiate elimination.

Eventually, children with Batten disease become blind, bedridden, and demented. Batten disease is fatal by late teens or early twenties.

This was 2004 when she was 4. She was perfect.

I did keep about a soda can’s worth of “her” because I couldn’t let go and I want some for necklaces in the future or to plant a tree with when I buy a house again.

Julie, London, Boston, my Auntie Alison and her daughter – Cousin Zoe we’re all there. I found a beautiful tree in one of London’sRoyal parks called Bushy Park.

Todd and my parents had not flown to England when we spread the ashes but Todd took this picture when he did arrive.

I miss her so much.

It has been 139 days since my daughter died and I still haven’t been able to write her obituary.  I don’t want anyone else to write it or any offers of help, it’s something I feel I must do on my own. 139 days feels like a grain of sand on a very large beach.  Like no time has passed.  Like it was yesterday.  It still surprises me how much harder it gets with the more time that passes.

I need a road trip.  Maybe that will give me some inspiration to write a tribute to my daughter, one that she really deserves.

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 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.

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.

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!

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