Wednesday, May 2, 2012

A year ago today..... I became a heart mom,  a year ago today WE began the  fight,  I learned the words CHD, HLHS,  Infant mortality,  "your childs life expectancy" and that my unborn baby girl would be born with half heart and may not live to see her first birthday. Right then and there my life changed forever. A year ago today we found out our unborn daughter would be diagnosed with hypolastic left heart syndrome. Today has been a difficult day for me. I cant believe how long it has been already. I am proud to say my daughter that some said would never live has made it to almost 8 months old. Its amazing! We have been through ALOT, but today I was also faced with the realization that  we are SO not alone and we are quite" lucky" in fact, hard for me to say, but true.  There is a family that lost there baby yesterday due to  spinal muscular atrophy. She was just 5 and a half months old. They were told she would maybe live to be a year and a half. She didnt make it that long. She was GIVEN a" life expectancy"...of less than 2 years. I realize I dont know how long we will have with Ella but to know she would NOT live past 2 years old..... no matter what?!!?!!? These two parents are THE strongest parents I know! To bring a seemingly healthy baby into this world and later find out that  she will NOT live past 2 years old and continue on with life.... how do you handle that!!?? They did the most amazing things with her! they gave her a bucket list and really let her LIVE her life! I have always stood by the fact that I will never take a day forgranted with Ella, I will not shelter her even though some might think I should. I wont because the song "live like you were dying" rings in my ears on a daily basis.  Ella is not Dying, she is infact LIVING and living a great life EVERYDAY!! I do  live in fear everyday that Ella may not wake up in the morning, but I also have the hope and  proof that it is  possible for her, at least she has the chance!! If I knew it was not even a possibility for her to live  im not sure how I would do.... I guess you just DO IT just like I tell people who dont understand how we do it.... you just DO! 
Today has been a bit much. And my plan for this blog was to tell you all about our weekend at the American Heart Association Heart Ball, that plan has change I will tell that story later. This blog is for me to realize a few things. Life can always be worse. We are so lucky we STILL have our baby girl, and she still has a chance to survive. And as tough as our life now is for us, so many have it so much worse. I just pray that all of us that have it" so luck"y truly realize and remember how lucky we actually are.  <3

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