Archives for February 2013

I was never a huge Disney fan growing up.  Disneyland was fun every once in a while, but I never really understood the “magic” of Disney until Hannah.   She seemed to embrace Mickey and Minnie when she was less than a year old and never wavered from that love of Disney magic.

Today, on Valentine’s Day, my hubby got me a Mickey and Minnie love-themed gift, which is very special to me (especially since we don’t exchange gifts on Vday).  To say I love this is such a dramatic understatement.   It is just perfect.

I’ve been hit by the Disney magic.

Every time I see something Mickey or Minnie related, I wish I could get it.  I find myself gravitating towards all the cute little trinkets, wishing I could purchase them all.  I have a few of the M & M pins that the kids were given as gifts for our Make-A-Wish trip.  I see all the various Mickey and Minnie stuffed animals that Hannah had collected in her life sitting just 10 feet away from my desk.

Hannah was buried with her favorite Minnie Mouse stuff doll.

I want to be surrounded by Mickey and Minnie.   It reminds me of Hannah, the happy version of Hannah who lit up so big when she met Mickey in person.   The Hannah that would sit and watch the Mickey Mouse Clubhouse with her big eyes and huge smile for episodes on end.

My Hannah, who was so exhausted one night but wouldn’t go to sleep, who found her Mickey Mouse and wouldn’t let him go.

I love Mickey and Minnie Mouse.

For the last few years, Genzyme (the company that makes Cerezyme) has had a team run in the Boston Marathon.   Each runner pairs up with a Genzyme patient to help raise awareness for rare diseases.   Hannah was matched with Mandy in 2010 and Kristin in 2011.

When I got the call last week that Hannah was chosen to be matched with a runner this year, I was overwhelmed.  It means so much to me that even though she has been gone for more than a year that her impact in the world of Gaucher’s Disease is still just as strong.

Lisa V, we will be cheering you and your flower skirt on (and we can’t wait for pictures!).

These past few weeks have been really hard.

When Addy passed away a few weeks ago, it brought back so many memories, feelings. She was one of Hannah’s two soul sisters, families I met around the same time Hannah was diagnosed, all around the same age.  Olivia passed 3 months to the day after Hannah did.  Addy held on for over a year.  She was 4 years old. It put me in a funk.

Rare disease advocacy is front and center in my life now.   Not only with our growing Little Miss Hannah Foundation, but also working for a very prominent rare disease awareness organization.   It has been very exciting but also very stressful with World Rare Disease day coming up for both organizations.

Then I found out Sunday that we lost Katie, a beautiful little girl diagnosed with Gaucher’s type 2.  I knew she wasn’t doing well, but she was only 9 months old.   When I got the news, I was stunned.   Completely shell-shocked and heartbroken.   I just didn’t expect to lose her so young.

Then last night, I had my first nightmare in at least a few months.   Woke up at 2:00 am, panicked.   I couldn’t even stay in bed so I went to my desk and just started working so I could try and get it off my mind.  Forced myself to go to sleep almost 2 hours later.

It was so vivid, so real.   It was like reliving Hannah’s death again, but it just seemed so much more desperate.   It brought back all those feelings of failure, that I couldn’t save her.    That I didn’t do enough for her.  That I wasn’t enough for her, that she deserved more.

Here I am again, trying to get ready to go to sleep.   But I don’t want to because I’m afraid of another nightmare, afraid to lose Hannah all over again and relive that intense pain I felt last night.