The lag in blog posts lately have been mostly due to a busy birthday/guest season around here, but I must admit, I have also been struggling a bit. I feel as though I am a (fairly) emotionally stable person when it comes to Eden's health status, but unfortunately there are some weeks that I completely fall apart. Last week was one of those weeks... within 36 hours, 3 kids from the CCF (Children's Cardiomyopathy Foundation - a.k.a. my support group) listserve died. Obviously, one of these kids dying is too many, and three was more than my heart could take. All three circumstances were different, but due to Cardiomyopathy. All three could have been or still could be Eden. All three caused me to stop in my tracks, give thanks for everything I've got, and I've honestly had trouble starting up again.
I have paused to try and figure out what is going on with me... (am I just feeling sorry for myself?)... and what I should be doing about it. I have talked to friends (thanks Nicole!). I have talked to Drs. (thanks Dr. Rubin!). I have even prayed (thanks God!). And more than just giving thanks for EVERY FREAKIN' SECOND that I have with Eden, I have decided to start fighting, I mean giving, back. What this will look like, I have not yet figured out. My goal is to actively support the community that has done so much for our family with the hopes that one more person fighting this ugly thing we call Cardiomyopathy might actually be what it takes to reach a cure.
I honestly don't know why it took me this long to figure out that I need to be doing more... better late than never, I guess.
Speaking of being late... here are some more pictures of how Eden celebrated her 5th birthday.
Making star shaped brownies for her preschool class (the night before).
Eating breakfast (Mickey Mouse pancakes) with her presents.
Blowing out the candles at her school party.
Playing with new toys and loving every second of HER day.
1 comment:
I am in - you're not alone in this fight!
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