Tag: rachel

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.

I’ve been busting my ass this past month.  Trying to bring myself back into the land of the living.  Therapy, a physical, multiple medication appointments to slow my racing mind.  I’m redoing our website for Geek Media in line with coming back from England.  Headed to England in a week and a half.

I signed up to start a 500 hour, comprehensive, Yoga Teacher Training as I want to teach yoga classes for grief and healing.  

Rachel died 188 days ago.  6 months without her, it feels like she died yesterday.  People think that losing a child gets easier with time and I can say after 6 months it seems to be getting harder.  I know I’ll never be “right” with her death.  This trip to England should have been organized by Rachel, not taken in her memory.

London and Boston had their birthdays and my kiddos are now Forever 16, 13, 12 and 11.  

I have been offered a part time job at amazon at night sorting packages for delivery.  I’m actually looking forward to it despite the low wage.  An excuse to get out of the house in a 1 million square foot facility, 4 minutes from home… I’ll be hitting my step goals for sure.

My thoughts are all over the place but I wanted to put them on paper. I’m trying to decide if I want to bring back my fundraising for Batten Disease.  No one I know in Denver, now, knew Rachel. Could I get people interested?  I finally started meeting people just in the last week out here. I had friends before she died here but everyone has pretty much disappeared.  Anna hasn’t left me, and I know she never will, but we have a bit more distance between our houses.

I imagine its frustrating for those who haven’t been through losing a child because they want you back to the way you were, the person you were.  The thing I enjoyed the most before she died terrifies me (4 wheeling).  Be kind to myself is what I keep on hearing.  Self care is another big phrase that gets spoken.  I’m not even sure what self care is.  I get sleep, I drink water and eat healthy and exercise but I think there is more to self care than just that. I have the rest of my life to figure it out.

I am definitely hoping to hold some kind of memorial for Rachel next year around her birthday in Massachusetts.

To fundraise for Batten Disease.  That is the question…?

The featured image in this blog is me and my youngest in a yoga class in Denver.

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.

One of Rachel’s favorite movies. Rachel became a vegan before she died, perhaps you can try a vegan meal in her honor.

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, 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.

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.

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 with her audiobooks for the blind

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. Continue reading “2016 is here and so are we” »

Rachel decided it was time.  She was ready to hold “Rosie” the Tarantula that lives at the Butterfly Pavilion in Westminster, Colorado. They have dozens of Rosies to swap in and out throughout a typical day and this Rosie was presumed to be about 10 years old.   Continue reading “Rachel conquers her fear of Spiders!” »

I put my three younger children into public school for the last 7 weeks of school as I have been taking a “Nursing Assistant” course for Rachel.  Both school and the course ended on the same day and I’m catching up on work.  I need to apply for and pass the state exam, hopefully I will get an appointment quickly. Continue reading “School is out for the summer” »

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