The Nightmares Return

20 months old - April 2010

With toys in her hands and a love of music ~ 20 months old – April 2010

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.


  1. No words…just sending love and prayers.

  2. *Hugs.* Carrie, if any parents could do everything possible for their child, it was you and Robert. I so look up to the both of you. Even now you both seem tireless in your love and dedication and effort for Hannah. It may not stop the nightmares, but please know that you really did do everything possible. You did. Hannah was lucky to have you as parents. Just as I know you were lucky to have her as a daughter. XOXO