→ BATTEN DISEASE

cheap $20 urn for rachelI have decided to spread Rachel’s ashes in England.  It is a place she always wanted to go but wasn’t able to visit. I have plenty of family there and I feel confident in my decision to put her cremated remains to rest.  I can’t believe I am going to leave her on another continent but its all the more reason to return as soon as I am financially able.

I had to purchase a real urn so Norwegian Airlines will let me bring her and I’ll bring her death certificate just in case. I’ll donate the urn or chuck it when I’m done.  Trying to find a place to spread her ashes, legally, and pick a few nice words to say. It will be my kids, partner and my parents. I have to find a place to spread her ashes.  Any suggestions in London, Weymouth or Cardiff, let me know.

These are three poems I found:

She is gone – By David Harkins

You can shed tears that she is gone
or you can smile because she has lived.

You can close your eyes and pray that she’ll come back
or you can open your eyes and see all she’s left.

Your heart can be empty because you can’t see her
or you can be full of the love you shared.

You can turn your back on tomorrow and live yesterday
or you can be happy for tomorrow because of yesterday.

You can remember her and only that she’s gone
or you can cherish her memory and let it live on.

You can cry and close your mind, be empty and turn your back
or you can do what she’d want: smile, open your eyes, love and go on.

Loving Memories (Your Gentle Face) – Author Unkown
Your gentle face and patient smile
With sadness we recall,
You had a kindly word for each
And died beloved by all.
The voice is mute and stilled the heart
That loved us well and true,
Ah, bitter was the trial to part
From one so good as you.
You are not forgotten Rachel
Nor will you ever be,
As long as life and memory last
We will remember thee.
We miss you now, our hearts are sore,
As time goes by we miss you more.
Your loving smile, your gentle face,
No one can fill your empty place.

Remember Me – Author Unknown
To the living, I am gone
To the sorrowful, I will never return
To the angry, I was cheated
But to the happy, I am at peace
And to the faithful, I have never left
I cannot speak, but I can listen
I cannot be seen, but I can be heard
So as you stand upon the shore
Gazing at the beautiful sea, remember me
As you look in awe at a mighty forest
And in its grand majesty, remember me
Remember me in your hearts,
In your thoughts, and the memories of the
Times we loved, the times we cried,
the battle we fought and the times we laughed
For if you always think of me,
I will never have gone.

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.

Hello.  We haven’t talked in quite some time

I know

I haven’t been the best

Of moms, hello, I’ve been traveling in the desert of my mind

And I

Haven’t found a drop

Of life

I haven’t found a drop

Of you, I haven’t found a drop

I haven’t found a drop

Of water

Water

I try desperately to run through the sand

As I hold the water in the palm of my hand

‘Cause it’s all that I have and it’s all that I need and

The waves of the water mean nothing to me

But I try my best and all that I can

To hold tightly onto what’s left in my hand

But no matter how, how tightly I will strain

The sand will slow me down and the water will drain

I’m just being dramatic, in fact, I’m only at it again

As an addict with a pen, who’s addicted to the wind

As it blows me back and forth, mindless, spineless, and pretend

Of course I’ll be here again, see you tomorrow, but it’s the end of today

End of my ways as a walking denial

My trial was filed as a crazy suicidal head case

But you specialize in dying, you hear me screaming “daughter

And I’m lying here just crying, so wash me with your water

Water

Hello

I haven’t talked in quite some time

I know

I haven’t been the best

Of moms, hello, I’ve been traveling in the desert of my mind

And I

I haven’t found a drop

Of life

I haven’t found a drop

Of you

I haven’t found a drop

I haven’t found a drop

Of water

begin again after child dies

It has been ten weeks since Rachel died and it has been pretty rough. So easy to fall apart and just sit with the grief.  Living with the grief can easily kill a person.  It’s not just the fact that she is dead, I’m only now starting to deal with the disease and what it did to her.  The disease took away so much from her over 10 years and I was too busy being a Mom to process the disease.  Being a Mom without Rachel takes up way less time now so being sad and thinking about things, being left with my own thoughts, can bring me to the edge.

I’ve been struggling with good days and bad. I’ve stopped talking to just about everyone I know.  Left with my own thoughts.

The Colorado summer sun arrived and my ability to continue walking and get my steps in got really hard last week.  So… I joined Planet Fitness and have been going there everyday since.  I have tried tanning twice and my white parts are red.  I don’t think tanning is for me.

Last week I gave myself 14 days.  If I couldn’t make a noticeable improvement within myself, I would call a therapist.  I would rather LIVE my LIFE than have to talk to someone who just won’t get what I’ve been through.  So here I am, killing it. Mostly. #betterthanagriefgroup

The kids are keeping up with their fitbit steps and are starting to visit the library (solo) on a daily basis so I can get some work done.  Boston is in Boston for several days.  Next weekend London is spending his first weekend with his father and I am taking Julie camping so we can help our friends build their tiny home.

The featured picture in this post is to announce that the kids and I are saving up to fly to London this fall. Norwegian is drastically discounting Denver to Gatwick direct and we’re all working towards saving up.  London!!!! It is something Rachel wanted to do but wasn’t in the cards with finances, divorce, timing and her decline.

I was at a Memorial Day BBQ this weekend and found myself with other parents who both have children the same age as Rachel was (should be). All of our children should be starting their senior year and living through all of the milestones that this year of life has to offer. College tours, homecoming, prom, senior pics, graduation.  The other parents knew that my daughter had recently died and yet they found it fitting to complain about having to pay for senior pics, cap and gown fees. Money, from what I can gather, is not an issue. Parents just complaining about the added expenses of their children, their healthy children, moving to the next stage in life.

I burst into tears, behind my sunglasses and looked away, toward the field we were sitting next to.  Wishing I had my daughter back, healthy.  Knowing she’s not coming back, wishing the ground would swallow me whole.

If you know someone who should have a child around the same age as yours, please try and be careful with them. We’re sore.  Sensitive. Broken hearted. We’d do anything to not be wearing the shoes of a grieving parent. Well, anything except trade with you because we don’t want you to know how bad this feels.

Tomorrow night will mark seven weeks since my oldest child died. This has been a hard seven weeks, and even longer eight years of her disease taking over, slowly killing her. The kids and I are doing alright, some days are better than others. I find that it is hitting Boston the hardest but he has always been sensitive like that. I love them all so much.

An unfortunate and unexpected side effect of such a tremendous and profound loss of my daughter has been involuntary urination in my sleep. I have urinated in my sleep three times since she died. Last night was, by far, the worst. I was soaked. I don’t know what is causing it. I am totally sober, getting in plenty of water and nutritious foods and walking several thousand steps every day for my health. This catastrophe happened three hours after I went to bed, and I went to the bathroom right before I went to bed.

So fucking embarrassing. I decided to blog about it because I figured there is somebody else out there who is going through something really hard and maybe, just maybe they’ll Google search this and find me. And know that they are not alone.

Unfortunately, I pretty much want to sleep on the lawn until this goes away.  I don’t know what the deal is, I’m not having tangible nightmares most nights. I do take a pill to sleep but that is totally normal for a mom who has just  lost a child.

And now, because I feel like Susie bedwetter, I can’t look my boyfriend in the eyes. FML.

This is not better than a grief group. Although my group says this is normal. 

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.

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

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.

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