Tag: team rachel

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.

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?

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

Almost a month ago I posted a request asking folks to send musical birthday cards for Rachel’s 15th birthday.  Our family has experienced the power of social media and the internet.  Last fall I posted a “Go Fund Me” seeking donations to help me purchase a wheelchair van as Batten Disease is taking Rachel’s ability to walk.  I was able to buy “Cartman” the low mileage wheelchair van at a very low price within a few weeks.  People are incredibly generous and kind. Continue reading “And the birthday cards for Rachel came flooding in” »

2012-12-18 17.00.45Hello folks. I just wanted to officially announce on Rachel’s website that we won’t be holding the race this year. Between Rachel’s worsening condition and our family dynamic changing I just don’t have the energy or time to invest in the race this year. My number one priority in life is to make sure all 4 of my children are taken care of to my best ability.

I know lots of people are bummed about this but in my heart I know its the right thing to do.

xoxoxo

– Kat

paintAn oldie but a goodie, dear friend Geri Calos has organized a night of painting and is donating $5 from each registration to Batten Disease Research!  Please consider signing up if you can, this is located at Sea Dog Brew Pub in Hull, Massachusetts! Click to register!

Team Rachel is thrilled to have secured our fourth sponsor with Goodwin Graphics, a very reputable and long-term business in Cohasset, MA.  They offer marketing solutions for small business!

Goodwin Graphics: http://cottonfeelsgood.com/

Today is my 33rd birthday so I imagine my Mom is once again thrilled that she is no longer pregnant with me (I am mostly joking lol).  I was born over 3 weeks late and weighed over 10 pounds so I really can’t blame her.  Thank  you Mom, aka Eileen, for giving me life and putting up with my crap, foul language and obnoxiousness all of these years.  🙂

I also want to thank my Mom for being the first to sign-up for Rachel’s road race which is in 2 months.  I can’t say I was outright nervous that no one had signed up because I know people are really busy with “back to school” whether it is their child or grandchild headed back in the next few weeks.  I guess my Mom had mental telepathy and for that I am so grateful.  We have one official walker!!!!

This week I am finalizing the Sponsor information for businesses who can give over and beyond the registration fee as well as walkers and runners who will ask their friends to donate on their behalf.  Plus the prizes and raffle items.  I have never done this before and got some really great ideas at the Batten Disease Golf Tournament I took John and the girls to yesterday.  They raised about $30,000!!!!  My goal is to raise $10,000 this year for our walk/run/raffle.

Have a great day today if you read this entry!!!

Photo: Rachel (6), Kat (?) and Julie (2.5).  Not really easily seen is London who was 8 days past his due date and born the next day.  We were at a pumpkin patch in Colorado.