Isn't it funny how the best ideas always come to you when you are in the shower? Its the best most awesomest place to get that light bulb of thought to turn on. This was me yesterday.
I was thinking about this post I had read the other day on Facebook, a blog about overcoming a crisis, and how you may not be still in the exact crisis, but you are still "burnt" from that crisis. ( I will post the link below) It was extraordinarily profound. I didn't even have words for it. But my soul, my mind wanted so bad to make sense out of it. How can this blog post connect to the world of CHD? How can this post speak to us as parents, caregivers and loved ones of children affected by CHD?
Collaborate and listen, here we go.
We are firefighters. Us parents, and caregivers of children with CHD are firefighters. We put out little fires every single day. Every single dose of lisinopril, lasix, aspirin, warfarin, we are putting out a little fire that could rage into a full grown wildfire if it attended to immediately. Every single time we drive to the insane amounts of doctors appointments, IEP meetings, we are putting out fires. Its no wonder we are still burnt! Our child may not be in the gigantic risk zone of say an interstage HLHSer, but we still are burning from that moment, that crisis. We are firefighters.
Think about what a stressful job being a firefighter is. Alarms going off in the middle of the night for a call waking you up out of a sound sleep. For some of us that alarm is the sound of the feeding pump going off, or the sound of the pulse ox. We live in a constant state of alarmedness. I know thats not a word, but that is what it is!
Sometimes, the fire we currently fight is bigger than the little fires of everyday. Our child is inpatient, post Fontan, or post Glenn. Or post Rastelli, or Norwood. Or post full repair for ToF. Or they have just had a heart transplant. At that point, we are in the crisis. We are deep in the wildfire of our childs fight for life.
Sometimes when we are deep in that fire fight, we breathe in the smoke, and it burns our lungs. But we go on, we have to. Its our child. But that burnt taste in our mouth perpetually lingers. It never goes away. It gets easier to deal with, but the damage is already done.
So yeah, we are like firefighters. We battle fires everyday. And it takes its toll. I see your dark circles. You see mine. We can look at each other and not say a word and just know what the other feels.
So suit up Heart Moms and Dads. We got this. Put your respirator on and get ready to put out those fires. I've got 5 syringes of meds to administer right now, so here I go!
To read the blog post about crisis, and remaining "burnt" follow this link below....