When Being Right Doesn’t Matter, or Does

itmattersSomething was wrong with my baby daughter.

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.

 

march

 


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…”

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11 thoughts on “When Being Right Doesn’t Matter, or Does

  1. It makes me SO ANGRY that we know something is wrong as a parent and the doctors don’t listen. I had that with my son, too. I’m glad you got answers and also super glad that you’re fighting for the right to defend our rights.

  2. I had to stamp my feet and yell a lot to prove that it was not “simply a speech delay” blah blah blah. Why do we have to fight so hard to be heard!! xxx

    • Why? Because the prevailing opinion among people in power is that unless they’ve experienced it themselves, it isn’t real. That goes for our medical problems and our larger societal problems. Infuriating!

      How is your child now?

  3. I could talk about how modern medicine all day. We had a similar experience, though not nearly as difficult, with my son’s reactive airways. They were treating the symptoms, not finding the cause. It was beyond frustrating, as I held him when he couldn’t breath. We must always advocate but it is exhausting to be a warrior against the giants all the time. Hang in there!

  4. Two sentences struck me in this piece: “There is no redemption in having been right about such things…” and “A reality denied is still real.” While I can’t speak to your personal experiences as a mother speaking up for her child, I can relate to your thoughts as they pertain to our country. Why are our leaders so focused on being right instead of doing what is right and good for our citizens?

    I will keep fighting too.

  5. I have always said that “We know our children better than any doctor can!”. We may not know all the technical terms and we may not have the training, but we know our children and we know when something isn’t right. I know that they never said “Oops” or told you that you were right, but the fact that you kept taking her back and fighting, is proof that you know her better than those doctors.

    • Thanks, Echo — I feel very confident that I know my daughter better than a doctor could, but I still need to rely on doctors who understand the human body better than I can. We all do — so frustrating!

  6. […] on freedom and confusing conflicts everywhere I turn. Truth is under attack there just as it was when I fought for Sammi’s care. Out of the mess tangling over and over itself in the news, however, came a surprise rallying cry […]

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