Fly High Sweet Addison

Last night I learned that Jesus came and took Addison to heaven to make her heart whole again. Addison is just a few months older than Colin with HLHS. She had her Fontan this summer (the surgery Colin is to have next summer) and did well until last month when she went into heart failure suddenly. She was given a miracle when she received a heart transplant and was doing so well she was released out of the hospital into the Ronald McDonald house. But suddenly she came down with an infection last week and it went downhill from there. Her new heart was now in rejection. Saturday night she had a seizure and coded. It took them 3 hrs to get her back. She lost her fight yesterday.

My heart hurts so much for her family. We have been in touch for over 2 years now and I have got to watch this amazing girl grow up. When I found out last night, I cried, then I went up to Colin's room (he had been sleeping for about 2 hrs) and cuddled up with him and cried some more while holding my son. I cannot even describe the pain and sadness I feel for this family. For the mom who has always been a champion for her daughter and loves her so so much, for the dad that just lost daddy's little girl, and for the big sister who just lost her best friend. And of course for dear sweet Addison who won't see her 4th birthday next month. I was so excited to see pictures last week of how happy she was with her family after her transplant (big smiles on her beautiful face); she was given a new chance on life, just to be taken away. HLHS sucks.. plain and simple.

Of course this sparked the fear that lives deep down in me that I try to push down and never think of. When our children are diagnosed with HLHS, we just think.. If we can make it past these 3 surgeries. We know as parents and caregivers that their hearts are not fixed by any means (and can never be), but we get comfortable in the fact they completed all "required" surgeries. But this hits home so well that this disease, this defect, this syndrome, will be my son's battle his WHOLE life, not just past next summer! HLHS sucks.. plain and simple. That could be my son right now or in a year or in 10 years. I couldn't help but to look and him and beg and plead with GOD, please please don't ever take my son from me. Please let him always stay here with us for the next 70-80 years. It's just not fair. I wish I could run and hug her mother right now, but they live in Colorado. I held onto Colin so tight last night, he kept trying to swat me off in his sleep. I cried on the way to work this morning after reading the beautiful tributes that my fellow heart moms left on Addison's page. I didn't want to drop Colin or Katherine off at school this morning, I just wanted to lock us up in the house and cuddle all day. So I could protect the both of them, so that they could help in my pain of grieving.

HLHS sucks.. just plain and simple. Please pray for Addison's family in this darkest of hours. Addison has now joined so many other heart warriors; they are all in God's arms with perfect hearts now.  From her carepage.. "Let not your hearts be troubled. Believe in God; believe also in me. In my Father's house are many rooms. If it were not so, would I have told you that I go to prepare a place for you? And if I go prepare a place for you, I will come again and will take you to myself, that where I am you may be also" Fly high sweet angel, you will be missed greatly here on earth.