While in the Emergency Department with Rob and Gavin last week I had the chance to speak with one of Gavin’s treating physicians while Gavin was having his MRI. Without meaning to, I stunned him into an uncomfortable silence. I don’t think his years of medical training had prepared him for the unexpected turn our conversation was about to take.
I suppose I’m getting ahead of myself here. Allow me to begin at the beginning…
The nurses had come with their cheerful smiles and funny t-shirts with “:)” printed on the front and “Akron Children’s Hospital” on the back to take Gavin by wheelchair for his MRI and Rob along for the ride. This was an MRI which would be a major determining factor in what we would do next, where we would go next, which tests would they run, next. A minilevel in the game known as “Gavin’s Minefield of Fragile Health.”
As I stood there, blindly staring and not really seeing any of the shows while I channel surfed between vulgar cartoons on the Cartoon Network, reruns of episodes of my favorite “Mommy shows” that I hadn’t seen yet or good old fashioned “trash television”, Gavin’s Emergency Department Resident came into the room to discuss what was happening so far.
So we did. We talked. We discussed. He asked questions. I answered. I recited Gavin’s incredibly complex medical history for him at will in an attempt to fill in any holes, any inconsistencies, any issues that may be hiding around the corner waiting to trip us up. Round and round and round we went no closer to an answer or the end than when we began, until he made one fateful statement passing on information.
“Mrs. Gorski, I’ve talked to Dr. Moo…Mode…”
“Yes, Dr. Moodley. He would like you to follow up with Dr. Brown (Dr. Brown is Gavin’s epilepsy/neuro at Akron Kids.) regarding all of the films he’s had today. Then he would like you to be sure to keep your appointment with him in September. And he would like you to also continue trying to get Gavin an appointment at John’s Hopkins…”
It was at that point that I started to ramble. I wasn’t venting. It wasn’t exactly word vomit. But I had been in the Emergency Department for nearly 6 hours. I hadn’t eaten. I needed to pee. I was nauseous and I had a horrible migraine without my medications. I was beyond exhausted and approaching complete overload very quickly.
And so, I started to speak…
“Doctor, I don’t suppose you have any idea what that’s like, do you? You have a child, things are going well when the questions arise. So you take him to his pediatrician. Who sends you to a specialist. Who tells you “I don’t know but Akron Children’s Hospital might” and so you go. To doctor after doctor. Specialist after specialist. Things are moving along until you run out of doctors and options and once again you hear, “We’re out of ideas but the Cleveland Clinic might have an idea where else to start” and so you go, again. To doctor after doctor. Specialist after specialist. Until the Cleveland Clinic tells you “I’m sorry but we’re doing all we can for him here. You should try John’s Hopkins perhaps they can help.”
Do you have any idea what that’s like? To go from your pediatrician to Akron Children’s Hospital, then the Cleveland Clinic and now you may or may not be able to find answers at John’s Hopkins. No, I don’t suppose you do and that’s okay. There’s no reason that you should. But damn if it doesn’t hurt, a lot.”
The doctor stood there for a few moments in stunned silence, looking at me looking at the ground. We never did speak again that day. A nurse came in looking for Gavin who had left long ago and the doctor slipped quietly out of the room while the nurse and I were discussing what was in Gavin’s future over the next few hours.
I can’t help but wonder what that doctor thought of me and Rob with our medically fragile 13 year old. Will he take the time to look and consider families and how deeply we are effected by everything that happens to and for our children in the future? I’d like to think so. Realistically, it doesn’t matter.
While I am sorry I made him uncomfortable. I’m not sorry that I shared that piece of our story, that piece of myself with him. They’ll never know if no one ever does.
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