I had every intention of starting heart week off by giving my tips for advocating for your child--strategies I've used, methods of persuasion where you don't look like a raving lunatic, but an engaged, well-informed member of the team. Yah, that was my plan.
I can't do it. This heart week has been hard for me. I can't put my finger on it, but it has been much, much harder.
Apparently, my emotional baggage is greater this year. Each story I read makes my heart hurt a little more. Each time I post something on FB, a friend comments and I realize just how many people I know who have lost their child to CHD. I counted--about one out of every ten of my heart friends has lost a child to the demon that is CHD. While I fight most days for CHD awareness so that someday it won't be one in ten, right now, it is scary and sad and emotionally overwhelming.***
Children whose stories I have followed for years are very, very sick. My heart breaks for their families. I want to do something or say something, but there is nothing. I've been on this road long enough. I've seen miracles happen and kids get better against the odds, but I also know, many times, there is nothing.
All of these awareness stories are touching my heart so much this year. Perhaps it's because CHD is all encompassing in my life still. CHD won't leave us alone.
I've read so many stories of kids having their "fix" and going one to two years between cardiac appointments and then finding all is good at the check up. I want that! There are many kids who don't take any medicines after their fix. I want that! There are kids who aren't reminded daily that they were born with a broken heart. I want that!
Here we are, four years in, "fixed" and "revised", and still presented with constant reminders that CHD controls our lives. Each morning, for the last couple of weeks, I wake a sleeping DQ, too tired to get up (despite 11.5+ hours of sleep) and face swollen. She has not been my happy girl. And later, each morning, her fingers tips and lips turn dark blue, almost black. I know, she is getting worse, but I can't articulate it. It petrifies me.
I have longed for the day when DQ can just be a regular girl. I mean, I treat her the same as I do TRex. I send her to school. I punish her and let her scream and cry at me (in her room) for 45 minutes if she doesn't behave. I let her play until she tires, but when it comes down to it, DQ tires out after a couple of minutes of running. And no matter how "normal" we make taking 10 medicines a day, DQ still takes 10 medicines a day. We can't escape it.
And while I don't want my daughter to be defined by her CHDs, it is hard to escape. I can't pretend nothing happened. Frankly, DQ isn't fixed. She won't be fixed and she will always have limitations. Since she tends to ignore her limitations to her detriment, we have to remind her. She will dance, run, and play until she is coughing. We've been told not to let her do that. How can you tell an almost 4 year old "you have to stop playing now" without an explanation? Not possible! And I'm not going to lie to DQ. So when she asks "why?", I have to tell her "your heart and lungs can't handle it, we don't want you to start coughing."
So, this heart week has been hard. I read so many wonderful stories of odds being overcome and it makes me so proud of these mighty warriors. But it also makes me sad and a little jealous because of where we still sit. Then I read the heart wrenching stories of loss and I fear the worst. But I'm so grateful for these strong women sharing their warrior-angels to help the greater good. And I feel guilty and sad and happy and grateful that my child survived and she is living life to the fullest.
At the core of it all though, the CHD Awareness stories leave me sad. Every story this year is making me sad. So, please forgive me for not doing as much for CHD Awareness as I would like. And please see Stefenie's blog, where she is strong enough to tell the heart stories, to spread awareness, and link to others who are stronger than me.
*** I know several years ago, the odds were one of ten CHD babies would not make it to their first birthday. I've heard that statistic has changed for the better through research. I don't know the new statistic. I just know my personal experience. Please understand that the odds are not 1 out of 10 babies die from all CHDs, but my heart friends tend to have children with complex CHD or complications from their CHD, which is not as easy to survive.