It wasn't until last week at Lydia's first feeding therapy appointment that anyone told me that we are trauma survivors. We are. I never thought about it. No one every asked me if I was doing okay. The focus is only on Lydia. Now as things are beginning to "normalize" a little bit I realize what we've been through in just 3.5 short years. We fought. She fought. We survived and we are changed.
After reading this article I realize where it shows in me. It shows when I am at the point of breaking down because I can't put anymore on my shoulders but I have to. It shows when our nursing agency asks me to contact senators to advocate for care. It shows when I'm asked to do anything extra because we're some sort of model household that will make "the system" look good. I respond with anger and spite because I don't understand why these people don't realize what I already have on my plate.
The medical professionals saving Lydia's life didn't get it. Some were better than others, but few of them lived through these things as a parent. They were empathetic and listened, would put a hand on your shoulder, but 9 times out of 10 their child didn't have open heart surgery, their child didn't eat through a tube, their child never had a trach. I get bitter and angry writing this, but somehow I believe it needs to be said.
We still face uncertainly with Lydia. Every year when it's time for a heart echo and ekg. Every year when it's time for the Neurological & Behavioral evaluation that could someday tell me she has beginning signs of schizophrenia. Shit.
From a post on July 29, 2015:
“Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning do to do afterward.” -Kurt Vonnegut
“To conquer frustration, one must remain intensely focused on the outcome, not the obstacles.” -T.F. Hodge
“And I got out of there without punching anyone, kicking anyone, or breaking down in tears. Some days the small victories are all you achieve.” -Molly Ringle
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