Confessions of a frustrated heart mom

In a few weeks, one of my favorite heart mom friends will be packing up, heading onto a plane and flying to Boston so her son can have surgery one more time. He will need a repair on a valve that was just repaired not too long ago. I know there is a misconception out there that surgery can cure congenital heart disease. This is a prime example of how wrong that is.

I have a confession. When I see the St. Jude ads on the television, I get angry. I get angry for my friends who have to spend so much to stay in Boston to receive the care their children need. I get pissed that in spite of the hundreds of deaths that happen on a regular basis from CHD, it’s cancer that everyone seems to know about. What about that mom who is saying goodbye to her son right now? Any disease that takes children away is terrible. All of them, not just cancer. When I see those ads I want to scream. At least those parents can have their children go to that hospital for free. There is no such hospital like that for cardiac families who outnumber cancer patient families by the hundreds. It sucks. It sucks that diseases have popularity contests and that the same one seems to be on top every time. Cancer “wins” with funding. It “wins” with an entire hospital. And it when it comes to awareness, more people think of cancer than any other disease out there.  I am not saying a sick child with a terrible disease is winning because I know it isn’t. I know way too many people who have lost children to cancer as well. Thank God there are places for them where they can be treated. Thank God some can be cured. I am saying  I want a place for my daughter too. I want celebrities to go on TV and say “CHDs kill hundreds of children every year and a fraction of money raised goes towards research on how to improve these childrens’ lives.”

Surgery has not cured Izzie. It has not allowed her to be able to run as fast as her sister. It has not allowed her to not turn purple when she is outside for longer than 10 minutes. It has allowed her to live, thrive and be with us, which is a miracle that I thank God for every day. However, I will always be looking over my shoulder to see if the monster is right behind me. Someday I would love not to worry about what could happen. I like to pretend I don’t care or that I try to live my life as if she were a normal child but I can’t. A cough is never just a cough, I have seen too many children all of sudden have to be admitted unexpectedly and a cold still terrifies me.

I find those posts that are supposed to spread awareness about a fatal illness like cancer insulting. I don’t want to see them. I will never repost them either. Don’t you dare tell me that I have never witnessed someone suffering from a fatal disease. I watched my daughter carried away to surgery three times. I have seen her scream her heart out without making a sound because a tube was down her throat. Those awareness posts make me crazy. I know how much people suffer from diseases like cancer. I may not say it but I know what Izzie has is considered fatal. She qualifies for Make-A-Wish because of this. Only 75% of children with HLHS make it to five years old. There is a reason for that. Because CHDs kill children as much as cancer does.

Here’s a question: Do you know how much families suffer with congenital heart disease???  Do you know what it is like to have every hope extinguished one by one? Do you know what it is like to wait for another family to lose their child so yours can live? Do you know what it is like to know how important it is for your child to gain weight because it is key to their survival yet they continually lose because their heart is working too hard? Have you ever heard me say something as ridiculous as “You probably don’t care and won’t repost this because you haven’t been touched by someone who has CHDs?”

Everyone knows someone who has had cancer. Not everyone knows someone who has had open heart surgery three times before they are three years old. When you understand what it feels like to stand for 12 hours trying to comfort your child who is terrified of every nurse that walks into a room while attached to tons of tubes and wires and who has not slept at all, then talk to me.

And trust me when I say that St. Jude has plenty to fund their operations. Plenty. Thankfully some of their experimental treatments can open doors for cardiac patients. Then I don’t feel so bad seeing the gold medalist snow boarder who was born with a CHD (Tetralogy of Fallot) advocate for them. I wish that children could be allowed to be children and not have to endure the hardships that sick ones do. I wish to God that this family who has fought so hard for their son didn’t have to say goodbye to him today.  But they do, please keep them in your prayers. They are one of many in the Heartland that will not have a merry christmas.

Thank you for reading.

One thought on “Confessions of a frustrated heart mom

  1. Hugs! As we approach Genevieve’s surgery, we have found that she is not immune to the marketing. We told her that she is in very good hands that the team at Boston is among the top in the world and she wanted to know why we were not going to St. Jude because at 7, she does not yet undestand that they specialize in cancer. Just that in her mind, they are the best.

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