I have gone through a lot of things in my life that added to my obsessive self-hatred, but not one of those things were ever greater or more traumatic than the belief that other people's opinions - real or imagined - mattered. I was wholly and hopelessly lost within my own tortured prison. But eighteen months ago I was handed the key to my cell, redemption and freedom were within my grasp. I turned the key and set the tumblers free in the lock. I gently pushed the door open and stepped into the light.
I'm sure you're asking how a few short months can change years of repetitive and brutal self-flagellating?
Eighteen months ago my youngest baby was born. Everything was normal until it wasn't; and I was surprised to discover that although my life had crumbled down around me, I hadn't. I was still standing - shocked, shaken, terrified - but somehow still upright.
When we had our second appointment with my son's cardiologist and he asked me what I remembered from the emergency visit, I responded, "Just that he has two holes in his heart. Two small Ventricular Septal Defects."
The doctor corrected me, "I'm sorry, but that's not entirely accurate. There's more holes than that. He has multiple Ventricular Septal Defects".
I was too stunned to speak and thoroughly confused. In the Emergency Room the doctor had drawn me a diagram; a diagram with two holes on it. Now he was telling me that the original diagnosis was wrong. I didn't think I had it in me to shoulder one more piece of bad news. These holes had caused my son's body to retain a pound of fluid and forced him into congestive heart failure. This damned defect had turned our entire world upside down...
My husband voiced the question that hung vulgarly in front of us, "How many holes does he have?"
The cardiologist cleared his throat and said, "Well it doesn't really matter to the diagnosis - the number doesn't change anything"
Of course it fucking matters, I thought.
"What I'm trying to say is that his prognosis doesn't change...it's actually hard to get a number in these kind of cases..."
The room grew still and I did my best to will away the dread. Finally the doctor answered, "There are so many holes that we simply can't count them".
I gasped as though he'd struck me.
In every person's life there is a before and an after. A pivotal turning point - an event so awful or awe inspiring - that it changes us. I'm lucky enough to know the exact moment when I became everything I thought I wasn't capable of.
I knew I had to be my son's voice - his advocate. I asked all the right questions and went toe to toe with doctors. I researched endlessly and read every medical journal I could get my hands on. I made contacts throughout the online community for "Heart Moms" and I never hesitated out of fear of judgement again. There were no stupid questions, no ridiculous assumptions, and no opinion that mattered to me that didn't come directly from a doctor's mouth.
For once in my life I believed that I was enough because I had to be. I stopped being scared of everything that didn't matter.That's not to say I wasn't terrified. I was. I feared losing my son, but to me that was the only fear that was valid anymore, the rest was just noise.
I ran myself ragged in those first few months - administering his medicine, counting his breaths per minute, attending weekly doctors appointments. I did whatever I had to in order to keep him alive; but it's what he did for me that's truly miraculous...
He made it so that I no longer have to pretend.
Preston, 18 mos.
All holes have grown over but two
His next cardiology appointment is in November.
The doctors say he should never need open heart surgery.
|Gabe - age 4, Preston - age 18 mos, Edie - age 3 (in June)|