Archives for October 2012

The Empty Cemetery

Hannah … her area stripped ….

Yesterday I went to visit Hannah at the cemetery.  I still go about once a week (unless there is heavy rain because it gets muddy).   I like to make sure her area is clean, her flower arrangements and holiday/seasonal decorations look good … you know, my sweet Hannah is always one of the prettiest decorated plots there.

This is the only new thing I get to do for Hannah now.   I enjoy picking out the decorations, the flowers… working on what would look best and still represent my sweet girl.  There are no other care decisions I get to make for Hannah anymore…except for this one.

As I rounded the corner into the cemetery which leads to the adult side, I saw only grass and headstones.  No color, none of the sporadic decorations I usually see.

Then as I got to the children’s area, I saw the same thing.  What was always a bright, colorful, and full of love and decorations for the children area was only grass, markers, and vases turned upside-down into themselves.   I felt my heart plummet to the ground.

Children’s area of the cemetery…empty

Hannah’s area, which I had just decorated for Halloween a couple of weeks early, was completely empty.  Gone were the new flowers, new decor, even her old rod iron pinwheel that we kept for the past few months.

See, the thing is, it is partly my fault.  I read the signs they post saying that they were going to do a cleanup (which they do on occasion) and that things needed to be removed by October 15th.  But usually those signs follow the rules that anything that is located INSIDE the vase will be okay.

I just ASSUMED that the same rules applied that they have all year.  You know what happens when you assume …

I called the cemetery this morning.  I learned that this is a yearly cleanup and maintenance, and that nothing can be put back on the grounds until October 22nd.  Everything that was picked up was tossed in the garbage.  Hannah’s beautiful new decorations were unceremoniously tossed in the trash like everything else.

This bothers me more than it probably should.

Ladybug costume & DNR

The only picture I have from Halloween 2009 – and Hannah wasn’t the happiest of campers in it!

The kids wanted to break out the Halloween decorations today.   It had always been a big thing when we lived in Texas, and the kids love to do up the front of the house.

I had absolutely no interest.

While going through the boxes in the garage, Abby found one of Hannah’s old costumes.  It was the ladybug costume she wore when she was about 15 months old.   Hannah and Abby were matching ladybugs that year — and Abby was so proud of that!

She brought the costume into the house to show me, prefacing it with “this is going to probably make you happy but also cry.”  Does my daughter know me or what?  Sure enough, seeing that tiny little costume just hit me in the heart.

I remember her wearing it.  I remember that year being disappointed because I only got one picture of her in the costume and she was with all the kids.  I can’t remember anything else about that Halloween with her.

Since she brought the costume in, I just haven’t been able to shake off this sadness.   I’ve been awake and teary-eyed all night since Robert went to sleep.  I can’t sleep.

Then I looked at my blog from last year.  Something I seem to do more lately now that we are getting closer to the date I am dreading so much…

October 14th … the hardest decision we have ever had to make in our lives.   The decision to stop fighting for my sweet daughter’s life, to accept that we were going to lose her sooner than later.

It was the day that my husband and I realized our baby girl was going to die, and that there was nothing left we could do to save her.

 

Hannah is making her mark!

The Little Miss Hannah Foundation was awarded the Genzyme Patient Advocacy Leader 2012 Award for our school-involved World Rare Disease Day program! We were only one of 9 organizations world-wide to receive this honor along with a grant to help us expand our program.

ethan_speaker We are very proud to receive this award for our Little Miss Hannah’s Jeans for Genes Day school awareness program.   It has been a labor of love, and it could not have been as successful as it has become without the help of Ms. Maggiore, Principal of Vanderburg Elementary School, the Vanderburg PTA, the Global Genes Project, and Cure 4 the Kids.

student-16For the past two years, we have celebrated World Rare Disease Day by working with Vanderburg Elementary School in Henderson, Nevada, to increase childhood rare disease awareness.  Special focus is given to those conditions that are life-limiting. Hannah’s disease is also explained and her life provided as an example of how children with rare disease must live each day.

Our program designed for February 22, 2013, has confirmed the participation of three Henderson schools this year – Vanderburg, Lamping, and Barlett Elementary Schools.   With this grant award from Genzyme, we will be able to increase the number of schools to 10 Nevada schools this year!

 From the PAL Awards website:  “Proposals were reviewed on an expanded list of criteria, so in a sense it was even more challenging this year. Patient organizations met that challenge by bringing forth their best creative ideas, strategic thinking and approaches to sustainability. “