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Thursday, January 17, 2013

finding hope.



As few days ago a thought occurred to me as I walked through the parking lot of the hospital where Elliott has his open heart surgery. I had to stop there after work to pick up a refill on a few medications; after calling it in early in the morning and being told it would be ready in the afternoon, I had to sit in the waiting room for thirty minutes because it wasn't actually ready. I sat in that crowded room for a half an hour and played a game on my phone, cursing to myself that I could have been on my way home at that point to play with my little boy after a long day of work. Instead, I was losing precious time sitting on a gross, old chair. Likewise, he was spending another hour with someone other than me.

The hospital that Elliott had his surgery at is a world-renound teaching children's hospital where many students eargerly get their degrees in pediatric medicine. In fact, one of the hot shot pioneers of pediatric cardiac surgery made a name for himself at this hospital and performed Elliott's own cardiac surgery. It was a big deal to us to live within a 20 minute drive from this special place, but like any hospital, it's hospital-ness makes it a very unfavorable place to be. This hospital, one of the best, takes the best care of their patients, but it does not regard much for the care of the grief-stricken families of patients. Waiting rooms are dingy and small, checking in with the secretary to see your own child is a pain, the food in the cafeteria is kind of awful and there isn't even real, caffeinated coffee anywhere in plain sight, for goodness sakes. So finding myself in a crowded 50 square foot room waiting for medications that weren't available yet but should have been was yet another reason for me to find hatred in my heart for that place.

The hospital has always evoked a negative emotion inside me. It was such a huge shock to end up in the hospital the day I took an ambulance ride with my baby strapped to a gurney and since that day I've found myself hating the very essence of the hospital. So many terrible, awful things happened while we there (this day was the worst day of my life, watching a family go through a similar experience was quite frankly almost as bad) that it's almost impossible to ignore the bad taste in my mouth I get when I pull into the hospital parking lot.

And it occured to me walking back to my car after finally getting his medications that, in that zoo of a parking lot where cars stalk pedestrians walking back to their car and become like  vultures hungry for any morsel of a parking spot, that place will always be part of my life. Part of who we are as a CHD* family. Elliott will always make routine visits to the heart institute located in the same building. He'll see other specialists there too, likely for his entire life thanks to his DiGeorge syndrome (more on that in another post). The hospital pharmacy carries special medications that our local pharmacy doesn't, medications that could possibly be life-long. And yes, he'll be back there again to have more surgeries. Inevitably. I've have shed so many tears in that place and likely, happy tears or not, there I will shed more tears.

There's one thing about that hospital though; that place gave Elliott a fighting chance at life. What if we never found out about Elliott's heart defect? There's a chance he wouldn't be here today. Because of that hospital, Elliott's surgeon, he is alive and he is healthy.

I found out today on the Truncus Arteriosis Kids Facebook group that one of Elliott's TA friends had passed away at 7 months old. This really breaks my heart. A special little life this world will never get to know. That could have been my baby. And if I am being honest with myself, with you my readers, I'd say that it still could be my baby. Things happen. Life happens. Hard stuff happens. I am lucky enough that my baby is a little fighter with more determination than I'll ever possess, and for that I live with the recognition that my life is filled with so much more good than bad.

And so, that hospital, it's more than just a place where hard things happen. In a way, it's a beacon of hope. A place where good things happen. And while that place will hold so many memories that I'd like to forget, there has been so many good things that happened there I'll always remember. We are very lucky to be tied to that place, that hospital; That it is part of our special story.

*CHD: congenital heart disease

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