Something wasn't right.
A reflection on years of systemic medical negligence and my boy's resilience in the face of it all.
It was immediate.
Something in me knew. What that was I didn't dare examine too closely because it felt dark, ancient, and cruel. But it knew. Something wasn’t right about my son.
It was his heart that alarmed the nurses first. It was slowing they said, I needed to push. So, I did.
Then it was his breathing. But it was me who noticed it first. Quick, rapid, shallow. Struggling. They took him then. Pulled from my arms crying. And so, I did, too.
It was fluid in his lungs. Could be an infection, could be from being birthed too rapidly, they didn’t know. We had a choice. Start IV antibiotics while we wait to get the fluid analyzed or trust he was fine and get the fluid analyzed. We chose the former. He tried to stop them.
The crying never stopped. Long after the splint holding the IV in place was removed, long after the lung fluid came back as being perfectly fine, and even longer after they had to heel prick him twenty times in the heels trying to get blood that wouldn’t swell. My cries matched his. Heart beating and wrenching in time with his screams. And then we were released and forced to enter our life together before we had a second to take a full breath.
Sleep was non-existent. Feeding hurt for both of us. But there was no help and no alternative. Just the reassurance that “babies are sometimes colicky,” and “Moms are sometimes blue.” We knew better. But I didn’t know that yet.
He was inexplicably different than the others. He was simply more. More of everything. More crying but also more smiles, more inconsolable but also more empathetic. More than anything anyone knew how to help us with.
The car was the worst. It overwhelmed us both. Him, hating the seat, the restraint, the distance from me—I can’t imagine why. Me hating my ineptitude, my ignorance, my self—I can’t imagine why. The car was everything we hated. Confined but separated, stuck but shoved forward.
The inability to be separate broke me. And in some ways broke him as well, because he could feel that from me. Him wanting more, me giving all I had, and it still not being enough. Ever.
Resentment, guilt, anger, disappointment, fear, and sorrow—all woven together by a distant but unbreakable tie of love. To survive, I needed the distance from it. For the world was failing us and telling us it was normal. Pushing us to be resilient in a losing battle that would never have ended if I hadn’t said stop.
Only one of us could be whole, and I chose him. I gave everything to him. Coaxed him into every moment, every milestone. And oh how brilliant he shined when he reached so many of them. But it came at the cost, a debt that would come due in months and years to come that I never realized I agreed to.
The glasses helped. But not nearly as much as we were told they would. In someways it helped him detach. But it also presented even more uncertainty and chaos to his mind for analysis and overwhelm. We tried normal again. Normal failed.
