“Once she was born I was never not afraid,” said writer Joan Didion about her daughter.
Children make me nervous. All of them, and they always have. Even my own.
One, out of all of the children in the world, terrifies me. She strikes a physical fear reaction in my body. Because of her, I now know what an actual, real nervous breakdown is and am prescribed medicine to prevent it.
Of course I worry about her brothers, but just not to this extent. And when I think about that, I do wonder why. The best explanation I can come up with is she is our worst-case scenario.
Ellie has always been the one who was set to fail. When I was pregnant with her, in those first few weeks before we knew anything about her, I was given facts about this “rainbow baby” pregnancy. I was told the statistics about my health and the baby’s health post-miscarriage. I was warned not to get too attached and was given pills to take through the first trimester to keep my womb as comfortable as possible so that maybe the baby would want to stay.
Once we made it past that point, I cried tears of joy when I learned this baby would be a healthy girl at the October anatomy ultrasound, but that didn’t last long. My husband and I found ourselves on Christmas Eve googling complications while I was on bedrest after an emergency hospital visit. Soon we would learn that this baby would, in fact, be born with Down syndrome and critical heart defects, and her first breaths, if she even made it that far, would be the beginning of an uphill battle. Truly any parent’s nightmare.
Having a medically complex kid has always been about balancing risk. My husband and I have a crash-course level of medical expertise, and it always shakes out to a conversation with the actual professionals about which option exposes her to the most danger – or always trying to outrun that worst-case scenario.
At this time last week, we were checking our daughter in to the children’s hospital for a heart surgery that we had been putting off for nearly three years. This surgery to remove a sub aortic obstruction, a piece of tissue that is so very tiny and rare, had been chasing after us like the boogey man, always lurking in the back of our minds. It forced us to talk and think about our own daughter objectively using only statistics and research, as if her loving, rambunctious heart wasn’t beating right against ours when we hugged her close.
The medical professionals ran tests and looked at scans of her heart, using those to make the quarterly decision: Is it worse to kick this can a little further down the road or to cut her heart open once again? Which will kill her first?
My husband and I gave her hugs and kisses and each whispered to her that we would love her forever before she was wheeled out towards the operating room. Ben and I just stood there when she left and looked at each other, unable to make sense of what we should be doing in that moment. (There is no right way, by the way.)
We had been prepped for years about the bad outcomes and worst-case scenarios and knew that in this moment, regardless of what happened over the next few hours, our lives were about to change.
The nurse came into the waiting room after about two hours of us being away from Ellie. She excitedly told us that the surgeon was finished and that it had wrapped up a lot quicker than everyone had expected.
The surgeon followed a few minutes later and was very pleased to tell us about how well things went and how quickly he was able to get in and get out, keeping her on heart and lung bypass for less than 30 minutes, which would set her up to succeed in recovery.
He explained that the one cut he made instantly improved her heart function, something that we had been told before surgery would absolutely not happen. This surgery, when the doctors weighed the risks, was performed in an effort to try to preserve the current heart function – as poor as it was – in order to stave off a surely catastrophic cardiac event and give us more time with our little girl.
A cardiologist came by once Ellie was in recovery in ICU and told us the results of the post-surgery echocardiogram, which were better than we could have ever imagined. “She is the talk of the town,” he said. “Everyone in the hospital is talking about that little girl with pigtails in the CVICU.”
“Lucky,” “blessed,” “planned for so much worse,” “unbelievable,” “better than we expected,” “perfect” and “best-case scenario” were just some of the words used by medical professionals to describe my Ellie.
My baby girl. This one.
The one who has always had the odds stacked against her.
The one who I am so often told “won’t” or “can’t” or “shouldn’t.”
The one who has forced me to work so hard every day for over four years to pull myself out of the world’s glass-half empty expectations of special needs and disability and medical fragility.
There is a whole department of (mostly) sane, rational people who are degreed and hold vast experience and great knowledge who fill the Heart Institute at Arkansas Children’s Hospital and will vouch for her.
She is perfect. A best-case scenario, even.
She’s been trying to tell us all along. Watch out because now she’s got the heart to really prove it.
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