Monday, February 4, 2013

Why I'm angry at heart month

Be warned: I'm mad.
It's February, which means that it's heart awareness month.  February 7th-14th is CHD Awareness Week.  We get busy in my household in February, hoping that we can spread awareness, pay forward the kindnesses given to our family, and maybe educate some people on what it's like to have a congenital heart defect sneak up on you and slap you in the face.
I post pictures of my children when they were in the hospital.  Post-surgical pics full of tubes and wires.  Photos of my children with ventilator tubes in their throats.  Feeding tubes down their nose.  Catheters.  You know why I do that?  So that people stop and take notice, and perhaps take a moment to educate themselves on the number one birth defect.  Also so that my girls can see that they are strong, and they have beaten the odds, and overcome some serious stuff.
On Facebook (and in "real life"), I have lost friends because they said they couldn't handle the pictures.  Or my posting of CHD facts.  Or when I repost fundraisers for people who have lost their children, so that they can get help paying for their child's funeral and/or headstone.  They tell me it's "sick", "wrong", "annoying", "too sad", "disturbing."  Do you think I LIKE the fact that my children have gone through this?  That I ENJOY thinking about my daughters being on life support, going through strokes and CPR?  Or that I take some kind of sick pleasure begging people to throw a few dollars at a fundraiser for a little boy who died in the same room that both of my kids "lived" in post transplant?  Believe me, it's no freakin cake walk.  I hate that my daughters have had to face this.  That any kid does.  Or any parent, for that matter.  The truth of the matter, though, is that without constant posting, people brush it aside.  Even with the CHD postings that my heart family and I flood Facebook with, I strongly suspect that most people have forgotten about it in the amount of time it takes them to scroll their mouse past a posting.
Would you ignore my posts if my children had cancer?
If they lost their hair?
If I was trying to raise money for pediatric cancer research, or for a child who lost their battle to cancer?
No.  You wouldn't.
You'd donate to fundraisers.  You'd come to our blood drives.  You'd look at pictures that showed a child's battle with cancer and remark about how strong they were, what a warrior they were.  You'd do whatever it took to help a local family pay for their child's headstone, without a single question about why it was so expensive or why they can't pay for it themselves.  You'd help deliver blankets, books, and toys to kids in the cancer ward at the hospital.  You wouldn't tell me to stop being so vocal about my child's illness, and you certainly wouldn't criticize my parenting for never, ever wanting to stop until there was a cure.
Is my child not as important?
Do heart kids not deserve a chance, too?
Isn't it worthwhile to allocate funds toward research to combat the number one killer of our children?
I give to pediatric cancer research.  I participate in fundraisers for kids with cancer.  I never think twice about it.  Because it's a child that's in pain, a family that's floundering in their difficulties.  I take no issue with the attention that cancer patients receive.  I just want the same for my own children.
I want to be able to post things about congenital heart defects and organ donation without people rolling their eyes, saying "There she goes again."  I want people to want to know more about CHDs and how they can help eradicate this monster.  I want my friends and family to support me and mine by supporting the efforts I try to make toward CHD awareness.  For them to never forget that CHDs do not discriminate.  That they take more lives than all childhood cancers combined.  That they are severely underfunded research-wise, and the healthcare costs for them reach into the billions every year.  Yes, billions.  With a b.  I want people to stop what they are doing when they see a picture of a heart baby, full of tubes, and think about the tremendous courage of the child and their family.  To reach out to them.  To pray for them.  To truly care about this fight that so many of us are in.
This is our world.  We live it every day.  Heart parents, like any other parents of a child with a serious medical condition, just want to be heard.  Really heard, and not just for one week out of the year.


  1. I would gladly donate to the blood drive, but I am several hundred miles away and I'm only 85 pounds. I wish I could donate blood but I don't qualify...I'm much more likely to need blood myself someday than ever be able to donate.

    I am an adult CHD (a very mild one, but I still face OHS, likely before I turn 30) and until last year when I was diagnosed, I was not aware of the scope of things 1/80-1/100 (depending on how things are calculated) not to mention children like your beautiful daughters who develop things like cardiomyopathy...WE NEED MORE AWARENESS!

  2. Iunderstand this too. Thank you for sharin Linsey. I pray some day all childhood illnesses are cured.

  3. I pray one day ALL childhood illness are cured, yet I feel it is VERY unfair to throw one, against the other. They are the same, yet different....

    A different illness, yet they are both killers...

    You would never find me promoting a cure for my child's cancer... and in the same sentence, bashing the fact that a CHD child may be getting more attention then mine...EVER!

    I get that you're promoting things for CHD, as I raise things for Leukemia/Childhood cancer, but be careful!

    1. Don't know why I couldnt post my name...but just so I don't get bashed for "hiding", this was posted by Shara

    2. Shara..
      I know where you're coming from, truly. But you have to know how much more difficult it is to get anything done for a kid w/a heart issue. I have BOMBARDED local media for the past 3.5 years regarding heart stuff.. not a peep back from most of them. I have personally heard, at least 35 times from people, "Well the girls are fine they had a transplant what do you need help for?" I think people fail to remember, that much like cancer, heart problems are a chronic and lifelong illness. They forget that the costs don't "go away" and brush it off like it's no big deal. This is my own personal experience with it. My own FAMILY has said-more times than I can count-that they are "tired" of my CHD postings. They admit that they ignore them, and don't find CHDs as important as pediatric cancer. It makes me sad, because if more people were aware, it would bring a lot more research to these diseases, and maybe someone else's kids won't have to go through what mine did. There was no "bashing" here whatsoever. I even invited you to participate with us for the blood drive, raising awareness for leukemia, but we got ignored. I don't know what more I can say or do to get the point across, but we ARE there for you guys, we DO give to cancer research, we DID donate money at your benefit. In other words, we support pediatric cancer research. We just want a fair shake, too. And for our families to stop telling us to "shut up" about CHDs.

  4. My granddaughter, Indigo, had a heart transplant at Mayo nearly a year ago, so I understand (at least partially) your frustration and anger. There is so much stress and fear when raising children with heart transplants. So many people have no understanding what it means to live with a heart transplant. How many times have I had to explain that a transplant is not a cure?

    I've been following the blog of a mother in Vancouver whose daughter had a heart transplant when she was just a few weeks old. On her blog she has stressed that there is a desperate need for research on heart transplants. There must be a way to make a transplant a cure. She wrote that Transplant Research Foundation is doing that work. Its phone number is 800-663-6189. The address is 555 W. 12 St. West Tower Vancouver, BC V5Z3X7 Canada. I know that there is cooperation between the US and Canada when it comes to heart transplants. In fact the baby from Vancouver who had a transplant received her heart from a baby in the US.

    I tried googling research in the US. There seems to be universities that are researching, but I didn't find a similar foundation.

  5. Just a disclaimer here: I have NEVER, nor will I EVER, say that there shouldn't be TONS of attention on pediatric cancer. NEVER EVER would I say that I wished that attention & awareness should be taken from the children with cancer. I just said that I wished that the heart families of the world got AS MUCH attention and money for research. That's all I ever said. It saddens me to think that someone would even for ONE SECOND think that I meant anything different. I just find it sad and disheartening (pardon the pun) that only a FRACTION of a penny of each dollar allocated for peds research goes to CHDs when they kill as many kids as all forms of pediatric cancer combined yearly. I hope that there comes a day when ALL childhood illnesses are cured, I just think it'd be nice if the heart kids of the world were thought about a bit more, too.