Over the years I have donated money to various causes. I’ve run in all types of road races, walkathons and fund raising drives. Never in a million years did I ever think that I myself would be in the position of relying on a charity to provide hope for myself and my family. I never thought I would be the one to ask people for help, to donate what they could to a cause that would mean so much personally.
Fact: more babies die from CHDs than all pediatric cancers combined. When I first started participating on various heart pages on Facebook, I had no idea the impact this statistic would have on me. For months I was surrounded by mothers who were losing their children to all sorts of congenital heart disease, not just HLHS. Babies who were born with such promise only to lose the fight before it even began. Others would lose their fight when parents would least expect it. Even now when I see that one more family has lost their angel, it hits me in a way I can’t explain. I don’t want us to be next.
Then there is the hope that research provides, such as Dr. Emani and Dr. Del Nido’s latest work on rehabilitating the left ventricle of HLHS babies through a series of surgeries that will make it possible for them NOT to need a transplant. The day I called our cardiologist asking if there was a slight chance that Isabelle would qualify was not a good day. I was told that she doesn’t fit the mold for that particular treatment. She needs to have a partial ventricle which she does not. I also brought up the statistic that gripped my heart of only half of these children making it to adulthood. Long pause. Well, that is based on older data and there are new discoveries happening all the time…look how far the palliative treatments have come in just a decade…yes, I know.
So my hope for Isabelle really does hang on what discoveries research can bring. Research funded by organizations like The Children’s Heart Foundation. You can imagine how this feels- to be dependent on something that hasn’t been discovered yet to keep my child alive. I can tell you exactly how it feels- it sucks. It scares me to death. I hold her every chance I get, enjoy every moment with her. I admit it is morbid to think about the what ifs, but its hard not to when you live in this world of heart disease. It’s unpredictable, it chooses its victims randomly and it devastates families for reasons science is still figuring out.
Peoples’ reactions to our requests for help amaze me. Some in good ways, some not so good. I am speechless when I hear from people I sat next to in elementary school giving me support, even donating and pasting links on their pages. At the same time, it shocks me when people close to us do more for other causes.
I was out with some fellow runners at a breakfast a few months ago to get some feedback on possibly putting a road race together. Before I had the chance to throw the question out there, someone was talking about the road race she had put together for her school’s club. “The best part of this race is that it isn’t like all the other races out there for diseases and sick kids. It’s to raise money for our hygeinists club, something different.” I felt like the wind was knocked out of me. Sick kids? Oh, you mean like mine? After being quiet and listening to the plans for this glorious race unfold, I softly said “So I was thinking about putting a road race to raise money for my daughter’s heart condition. I suppose that would be a stupid thing?” Of course people back-pedaled from their previous stance of Anti-Sick Child race. For me, it was a moot point. I just wanted to leave. I haven’t had the heart to run with these people in a while, to be honest. That really upset me and I left that place hurt that my idea was considered so overdone and ridiculous. So you can imagine how I feel now when we are trying to get people to walk with us and only a handful of people have signed up.
I never thought diseases had a popularity contest. I didn’t know that cancer trumped heart disease or that MS counts more than an obscure heart defect. Or that putting on a road race for a dental club is more meaningful than helping someone get help for their loved one.
Thank you to all who have supported us this far and who have lifted my heart when I have my moments of panic- when I realize how precarious Isabelle’s life really is. When I feel like I can’t breathe at the thought of losing her. thank you for making me feel not alone in this, and in spite of distance or time since I have last seen you, you have reached out to me.
hopeinaheartshape 