I said it to her pediatrician when she was just a few weeks old. He laughed at me, told me she was fine.
I said it in the emergency room when her chest and throat were retracting with her rapid breath. They gave her meds, watched her for a few days, sent her home with me.
I said it to her new pediatrician. She looked more closely, waited, told me to sleep-train her.
I said it again when everything failed, when she wouldn’t eat solid food, wouldn’t sleep through the night, couldn’t make it through a cold without hospitalization. And finally, finally, someone found the something. When they did, nobody said, “oops.” They fixed her congenital heart defect, the source of every problem.
I was right, but it didn’t matter.
When my little girl still couldn’t eat enough to grow, I asked if it had anything to do with the tangle of artery in her chest a doctor had fixed years before. The first GI doctor said, “no.”
When they started treating her eating issues with a strange diet and invasive procedures, I asked again if the problems were anywhere near the spot where her aorta had compressed her esophagus. The second GI doctor said, “no.”
When her symptoms and the cells they found in her esophagus didn’t match, I asked again: any chance it has anything to do with her double aortic arch? The third GI doctor said, “what double aortic arch?”
When we went back to the doctor who fixed her aorta the first time, no other doctors ever came to me and said “oops.”
I was right, but it didn’t matter.
The helplessness that comes from being ignored and dismissed is nearly indescribable. There is no redemption in having been right about such things, whether they are about one’s own children or about the size of a crowd or the impact of pre-vetted refugee immigration or the effect of limiting contraceptive availability for our nation’s poor. Like I did in every doctor’s office for years, people can share truths until their breath runs ragged and their voices disappear into crackling pleas for help, and even if the truth becomes accepted fact, there will be no redemption felt from the attempts that failed. Only the end — justice, healing, hope — will matter, not the statements or songs that failed to move power to reason, whether that power is my daughter’s doctor or the legislators set with determining the fate of her health care.
A recent study by the Journal of the American Heart Association explored the incidence of PTSD in the parents of children with congenital heart defects (you can read the full study here). It’s still unclear, the study notes, whether the parents of these children have increased or decreased mental health several years after their children undergo surgeries. In my case, I think there are ways in which it has improved my ability to bounce back after a crisis and ways in which it has diminished my ability to think past the crisis.
In fact, my self-care comes in those two forms: public bravery and private collapse. I’m prepared to soldier through — prepare meals, comfort those who suffer — and also to hold my wilder emotional releases for moments of solitude. When I see the facts before me and receive conflicting messages from the media, angry people online, or my family, I fight back in public and I cry in my husband’s arms. I march in the streets and then lay awake at night, my heart pounding, remembering my history of saying but what if and the world’s answer of no.
I’m feeling the effects of having been right and inconsequential. I feel the negative-weight of my not-mattering. What I saw in my daughter’s retracting chest and in her strange way of swallowing was real even if I was the only one who saw it that way.
What happens to people in my country is real even if our government won’t see it. I hope that thousands of people whose stories don’t matter individually — whose truths don’t matter individually — add up to a larger message that we all, in actuality, do matter.
A reality denied is still real. Past the anger that makes me shake in the night, I will fight to defend it.
This has been a Finish the Sentence Friday post hosted by Kristi from Finding Ninee. Tonight’s sentence is “When it comes to self care…”