Discontent in the Heartland

Lately there has been discontent in the Heartland.  I coined the term Heartland in my book as a catchall for we heart moms, heart warriors, survivors, bereft parents, and extended family and supporters.

Some things of a bad nature have been afoot at the CircleK in the Heartland including:

  1. A woman faking CHD to scam money.
  2. Another person using pictures of a CHD baby (not theirs, this child has died) to scam people into thinking they can get this child a transplant.
  3. Some moms telling other moms they’re not “real” heart moms because their kids died – I can’t tell you how sick that makes me.
  4. Adult CHDers who don’t like Heart Parents, and Heart Parents who don’t like Adult CHDers (and I want to put them all in a time out because we’re on the same damned team already).
  5. and finally . . . three sad morning newscasters in Tennessee who laughed about a donor heart falling on the ground.

Frankly, I think that #5 on its own wasn’t that big of a deal because we expect an awful lot of people who really don’t know the first thing about CHD.  However, I also think it was the tip of the iceberg in a world full of hurt.  So, I’m going to share what I wrote on the newscasters’ wall and hope and pray the healing begins soon.

Hi, I’m not mad at you. I know why you laughed because you don’t know or why the heart moms are mad. I’ll tell you a secret, they’re not mad at YOU.

This is why they’re mad.

They’re mad because when they call the local paper to get coverage about a fundraiser they’re trying to do to save lives of babies, the lady in the newsroom tells them, “If we did a story about every mom with a sick kid, we couldn’t run any ‘real’ news,” even though the story is really about a mom trying to help other kids in their community, not her own kid.

They’re mad because their kids born with malformed hearts through no fault of anyone are lumped in with people literally who smoked or ate their hearts out. They are mad because the one organization on the planet that is supposed to help them (the American Heart Association) uses up their sad stories and gives back less than a penny on the dollar to help their kids. They spend it on fat kids and old people . . . please use fat kids and old people in your advertising if you’re not going to help kids born with heart defects. It’s a bait and switch.

They’re mad because you can’t “see” how sick their kids are unless they strip off their shirts and you see scars that no child should endure. They’re mad because heart defects receive less funding than pediatric cancer even though heart defects happen five times more often. They’re mad because autism gets more press even though heart defects are just as common as autism, yet CHD kills more children under 15 than any other disease . . . not just in the USA, but in Africa and India and China. . . everywhere because it’s the equal opportunity child killer.

They’re mad because the young lady of 28 who got that heart was darned near geriatric in a world where 8,000 of their babies die in America every year and thousands more older children are lost. They’re mad because the world seems to think that a transplant is a cure, but it’s really just another very rare disease.

They’re mad because when the press VERY rarely does an article they often get it very wrong. When these stories show up in TV shows, they tune in and accept the errors in fiction just because for a glimmer they feel recognized.

They’re mad because people infiltrate their community pretending to be sick or pretending to have sick kids to scam money out of them. They’re mad because they sometimes go bankrupt on medical bills. They’re mad because it’s not remotely uncommon to find families who can’t afford headstones for their children amongst them. It happens all the time.

They’re mad because people say “Get over it,” but the only way this ends is in death – the death of a mother or the death of her child. There is no other way, and this is literally a lifelong stalemate. They’re mad because unless their children die, they’re not allowed to grieve, even as they’ve lost so very much.

Mostly, they’re mad because they spend every day of their lives fighting an invisible disease and praying that maybe, just maybe they’ll  NOT outlive their children. But the only time their pain registers in the press is when something like a tipped over cooler gets caught on tape.

They’re not mad at you – they’re mad at the world, and really if you lived with that much unacknowledged pain for years on end, it might make you a little angry too.

So, maybe instead of being sorry that their feelings were hurt or hurt yourselves that their anger was misdirected at you, you might offer to do some stories about Congenital Heart Defects during Heart Month in February. You might show how many thousands and thousands of children just in your very own state with your very excellent Children’s Hospital are saved each year, and what this community of angry mama bears is doing to make things better. Interview your surgeons and doctors. Interview the family of the woman who got that heart and don’t ask them about the cooler or the transplant, ask them about the pain of 28 years on a tight rope between the hope for their baby girls’ life and the fear of her early death.

It’s just a thought from a thoughtful person who knows a thing or two about being a heart mom.

Peace and love,
Amanda Rose Adams
www.amandaroseadams.com

http://www.facebook.com/pages/Heart-Warriors-A-Family-Faces-Congenital-Heart-Disease/137146163036780


22 thoughts on “Discontent in the Heartland

  1. Bravo Amanda! You have such a wonderful way with words! Thank you for speaking so elegantly for the CHD community. xxxooo

  2. Yes yes yes…tell them…I agree..we have the right to be mad for our babies! Madeline has tetralogy of fallow w pulmonary atresia
    And she’s 22 months and hell yew I have the right to be pissed..
    She didn’t ask for this nor did I drink, do drugs or cause this to happen..print that and help with the cause! Don’t be a hater-help make a difference!!! Don’t add to the chaos for us heart families!

  3. That was beautifully written Amanda. You hit every Heart mamma point on the nail. My four year old has HLHS and you’re right I am mad at the world, because no one should have to endure what I have seen the children of the cardiac floors endure.

  4. Thank you. Thank you for saying what I am so often afraid to say or voice. Thank you for having a better voice than some of the rest of us. Thank you, from the bottom of my (broken) heart over my son’s broken heart.

  5. I am on that tightrope and it has been a tremendous strain. That people really do not acknowledge the pain of this is hard and it has taken a toll. I am overjoyed at the fact that my son is 22 now and has survived so long with a single ventricle. My own heart is weighed down with the losses of my friends children which I take with me always. The faces of these heart warriors that were lost so early will never fade from my memory. I can retell the experience of loving and losing them all. Their parents are always in my thoughts and my prayers.
    We celebrate my son’s long and very hard victory to be here, and yet we face a very uncertain future. His physical condition limits work choices, his stroke limits academic pursuits.
    Thank you for your essay. It really speaks to what the mothers and fathers experience.

  6. Again, this is totally awesome and right on!!! BRAVO for standing up and speaking the truth…folks need to hear loud and clear why we feel the way we do…Us heart families needed this!!!!

  7. Loved. every. word!! I am a CHD girl and my girlie had a heart transplant. It’s nice to “meet” you. I linked over from another heart mommies blog who blogged about this post. Great Blog!

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