It is a phrase my family has used countless times, to signify what comes in the “after” during those times in our lives that distinctly separate it from the “before”. I have written about this many times. Finding out you are carrying a child with a complex congenital heart defect is certainly a time when your life becomes completely different in a moment. And – I am finding – having your child go through a successful open heart surgery is another such moment.
For the first ten and a half months of Kiran’s life, I was on high alert. He was on a pulse ox at night measuring his oxygen saturations, I was counting respiration rates and watching retractions, I was worrying and fretting over every little thing….There were numerous trips to the ER in his first months of life. I got used to living this life of being on my toes. I had hospital bags packed in the closet, ready to go.
And now? I am trying to remember how to live outside of that constant panic. I am struggling with what it means to be a mom when my first ten months of doing so was so different than the now.
Kiran has a cold. He is stuffy. But he’s not retracting when he breathes, and his saturations are on point (Yes, I still pull the pulse ox out to spot check when I have a concern, even though all the doctors have said stop using it. Please.) A year ago, we were just coming home after a week in the hospital due to a cold. Granted, he was an unrepaired newborn at the time. Still, I am finding myself having to alter my thinking. Quiet the fight or flight response in me. Realize that he is medically stable and doing really well. Let him be a normal kid with a cold.
On the flip side of all of this, even as I am educating others about congenital heart disease being lifelong, I find myself in denial. I find myself wanting to believe that it’s just over now, that we made it to the light at the end of the tunnel. I know it’s not true. I know there may be times I will have to go back to being the on-her-toes mom. I know there will be other interventions, and there will always be more appointments. But sometimes, I just like to…pretend?…that he’s cured. That it’s over. That we made it through the darkness.
And I am certainly in denial about moving forward with other appointments for Kiran’s other medical issues. We drive to Iowa City tomorrow. Kiran will have his hearing checked early Friday morning. We will meet with a neonatologist to ensure we have all the services and specialists we need for him (since we moved cardiology to Iowa City, Dr. R. is wanting to make sure everything is covered for Kiran). And then we see the genetic eye doctor again. And – as terrified as I am – I am pretty sure we will be moving forward in setting up a brain MRI for Kiran. It’s time. If there are answers to our questions, we need to face them.
But I don’t want to.