Tag: Death

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.

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.

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. 

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.

The merry go round that is my life seems to be spinning faster these days. John moved to Denver on Friday and is staying with us for 10 days. It is pretty interesting to have him in my home after so many months apart and so many bad feelings between us. This is for the kids and hopefully we will be able to be somewhat nice to each other for them. Continue reading “December 8th, 2014” »

I took Rachel to her second appointment with her Pediatric Rheumatologist and he confirmed that she does have Lupus, also known as Systemic Lupus Erthymisomethingerother. How does a beautiful and innocent kid end up getting an early death sentence and Lupus? It’s total bullshit and rather than be angry this fine evening I would like to pose a question to those folks that still read my infrequently updated blog.

What do you live for?

Last year I spent many weeks living to cross off items on the bucket list, taking my kids to multiple states and experiencing all sorts of awesome things. Already this year I have driven my kids down to Florida and back and watched the miracle of Rachel and London learn how to swim. I have personally been living to make sure Rachel, Julie, London and Boston get to experience countless amazing days while Rachel can.

This year I want to continue this mission but maybe travel a little less (my new Jeep is not so good with gas mileage). Planning on sharpening our camping skills, maybe get a little sailboat. I’m looking for more adventuring ideas, things to enjoy, experience, to LIVE for.

So… What do you live for?

Took this picture of Rachel today. We clocked 100 miles with the Jeep’s top down today. It was 65 degrees in Massachusetts today!

This is a repost from Rachel’s Mom’s blog @ www.mrskatvon.com

Title: 847pm

When you get a call at nearly 9pm from the head of Neurology you have to kind of figure that it is going to be bad news.  Dr Darras called this evening to let me know that Rachel’s Juvenile Batten Disease test came back positive with the standard DNA presentation.

For those who are new to the road I have been traveling with Rachel, Batten Disease is 100% fatal.  There is no cure, no real treatment… from what I have read up on it within the last few weeks all they can do is treat the symptoms.  I will leave you to google “Juvenile Batten Disease” because while I am ok right now  (I was pretty sure that she had something neuro-degenerative) I will not let myself think of the future right now.

And to anyone who reads this please take heart in the fact that you can’t say the wrong thing to me.  I’d much rather you stick your foot into your mouth than ignore me because you couldn’t come up with the right words.

The next step:  MRI on Thursday which will give us a good baseline and comparison from her other MRI 16 months ago.

John will be home in a few minutes so I have to prepare myself to tell him…