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.

When Rachel was little she loved a boy who had cancer. She was a sweet soul who only saw the boy for the boy, she did not see the affects of cancer on his body. After having cancer for a long time, he died as a result of having Neuroblastoma.

It is no secret that I didn’t put myself or Rachel’s brothers and sister through having a funeral for Rachel.

Instead, in March, I am going to shave my head (for the second time since 2006) in honor of Rachel’s friend, Nathan and all kids who have survived cancer, who died as a result of cancer or who are currently fighting cancer.

St. Baldrick’s raises money for pediatric cancer research and they hold fundraisers all over the United States, where folks raise money through donations and then shave their heads.

I am shaving my head on March 16, 2018 and am asking for donations. For Rachel. For Rachel’s friend, Nathan. For any child you know who has or has had cancer.

Please follow and donate to the tax deductible St. Baldrick’s fundraiser by clicking on this link.

I shave my head back in 2006 for St. Baldrick’s. This featured image on this post is me and Rachel as I was pregnant with her youngest sibling, Boston. My hair was growing back in.

Please donate. Please share. Pediatric Cancer is such a underfunded and curable cluster of diseases.

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.

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.

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


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



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:


I knew she was going to die but it never really sunk in until she did.

Life is so short.

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