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.