This just in:
An article popped up on my Facebook feed a few years back. The headline read: Study finds 80% of parents with medically fragile children have PTSD.
Um….OK. Yeah. No shit. (Pardon my language).
Seriously, though. Think of someone in your life, younger than you, someone you care for. Your own child, younger sibling, nephew, niece, cousin. Now picture them only days old, a tiny baby, depending on you for everything. Your job is to keep them safe – it's your only and most important job. Now imagine you have to hand them over to strangers who are going to cut and saw open their chest and stop their heart to fix it, or gerrymander it to work just a little bit longer. Just imagine it for a minute. I know it is scary, but just imagine it.
I know, I know, believe me, I know – you want to run the other way, just grab your precious little one and run for the hills, far from these monsters who want to do unspeakable violence in the name of medicine to this small body. But wait, here's the thing, if you do that, they will die. You do the math and listen to the experts and try so hard to be strong, to feel solid in your “choice,” but there really isn’t one. The only chance at life for your little love is to hand them over, and wait, helpless, as strangers do what they must. And pray. And try to forget every medical drama you ever saw, and try to pretend that doctors don't have lives, or cares, or drinking problems, or marital discord, nothing that could distract them from doing their very best. And cry.
And now, researchers have found that parenting a child who needs regular medical interventions can cause trauma...Yeah. it's even worse than it sounds. It's freaking horrible, to be honest. And, 9 years into our journey, I’m here to tell you, it doesn't get easier.
Now imagine that you have to do it again, and again, and each time, your little one is a little bit older, understands a little bit more, and will tell you no, will beg you to take them home, will cry that they don't want to, will promise to be good if you just take them home. I can't figure out why that might cause trauma, can you? Jesus! I'm surprised it's only 80%. Seriously.
Most heart parents are literally barely hanging on. We look strong on social media, we keep our outward world positive, for the sake of our children who are patients, and our children who are not. We put on our brave face, our grown up pants, and we take our kids to the hospital. We join groups with other parents going through the same thing. At least we know we are not alone - but this is a double-edged sword. Being not alone on this path means others have to experience it, too, and we would never wish this on anyone.
We hoist each other up. We lean heavily on the shoulders of those whose eyes tell us they know, they've been there. Our hearts soar with a smile or a laugh, or an even remotely normal moment. And we need a break, but trust no one to give it to us. Really, who would you trust to ensure your child doesn't die? Who would you trust to know exactly what shade of purple their nails can turn before it's time for medical attention?
Yes, I'm traumatized. Of course, I’m traumatized. I'm angry (at no one in particular). I'm tired. I'm frightened. I'm lonely. You see, humans are hard-wired for fight or flight, to handle life-threatening emergencies. The problem is, we're wired to handle sprinting from the enemy.
This here, congenital heart disease, it's a marathon, but you don’t want to reach the finish line.
Man, I wish I had stretched first!