If your loved one had cancer, what would you do? Or how about diabetes? Multiple sclerosis? Cerebral Palsy? I know what you would do-you would try to make your cause known. You would attend events pertaining to your loved one's disease. You would do walks or runs or silent auctions in hopes of raising money for the issue that had so deeply affected your life.
So it goes with Madi. It was not my choice to be thrust into the heart world. I didn't ask for an extensive knowledge of ejection fractions, catheters, ECMO and the like. But here I am. I believe that I should make the best of this situation that I can. To me that means that I have not only fully accepted my position as heart mom, I have embraced it.
If you follow my Facebook page at all (or even the CaringBridge site) you know that I am usually up to something. Whether that means organizing blood drives, fundraising for HeartWalk, assembling goody bags for kiddos in the hospital, or bringing donations of pop tabs, books and supplies to the Ronald McDonald House, I am on it. I firmly believe that it's important to give back. When you go through something like we did you learn very quickly about the importance of the kindess of strangers. It doesn't even have to be something big or expensive.. just to show you care is sometimes all it takes to turn someone's day around. For instance, when Madi was in her isolation unit at Mayo there was a volunteer that came around every Thursday and would give parents a hand massage. It may not sound like much but that half hour every Thursday went amazingly far at restoring my pschye.
So yes, I will "spam" my Facebook constantly with articles about kids with CHD, legislation to get better funding, requests for donations to specific causes, or even a signature on a petition. I have heard comment from some people saying that they think I do too much. That pretty soon people won't listen to me anymore because in essence I don't shut up so they have to shut me out. That comment not only stung but it kind of fueled my fire. Since when is trying to raise awareness "too much"? At what point would people recommend I walk away and refocus on something else? To me that's just nuts. I no longer am able to work outside of the home. This is not only something for me to do, but it's something I can feel good about.
Madi is one of the lucky ones. So far, she is progressing beautifully, and we have not really had any issues since she got out of the hospital. Not every parent of a child with a heart defect (or any disease for that matter) can say that they are lucky. So, we keep pushing. For better care, insurance benefits, and procedures. For more early intervention and research dollars. For a cure.
Since we haven't found that yet, our work is not done. And it won't be. Not on my watch anyway.
The way I see it? If you don't like what I say on my own Facebook page, don't read it. If you disagree with what I post, again, don't read it. If you think I do too much that's fine too. I don't need anyone's permission to rally for a cause that has effectively changed my life, and done devastating damage to other peoples' lives that I happen to care for very much.
If this post seems a little bit bitchy and defensive, that's cause it is. I never thought I would have to defend my position to anyone but here I am. Just the fact that I have to explain things is rather dumb if you ask me, but here I am-shouting to the rooftops that I am a crusader for heart health.
And no one will be able to shut me up. :)