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A portal to grace
Pass it on
Pass it on
I'm reading
A portal to grace
Pass it on
Pass it on
I'm reading
A portal to grace
Pass it on
Pass it on
Articles
17 June 2019

A portal to grace

An excruciating decision becomes a moment of grace

This story originally ran in issue #59 of Dumbo Feather

Illustration by Carla McRae

I’m 37, pregnant and petrified. My husband and I have already had one miscarriage and don’t want to chance another. But my hormone levels have spiked and my doctor strongly recommends amniocentesis. Although it’s meant to be a safe procedure to detect genetic or chromosomal defects, amnio carries between one in 200 and one in 400 odds of causing miscarriage. It’s a less-than-one-percent risk, but to me it feels all too likely.

Six weeks earlier, when I saw and heard our child’s heartbeat in that first ultrasound, everything changed for me. Each little rapid, fluttering thump made me feel hazy and light-headed. My senses filled with an all-consuming, hearth-like glow. The doctor printed out baby’s first photo. I squeezed my husband’s hand so tightly I thought we might fuse.

Although I unwaveringly support women’s rights to make their own reproductive decisions, I knew, irrevocably, mine would be to keep any heart beating until my own stopped. As we wrestled with the amnio decision, Warren and I have the talk that countless parents have. “If something is ‘wrong,’ what will we do?” I’d had my moment and knew what I would do. But did he? With no hesitation, Warren says, “Our child is our child.” I still remember the look we shared.

We do amnio. Everything is fine.

Xavier is born and proclaimed healthy, but a day after he is having seizures and is rushed to NICU. In a flash, our lives go from imagined diaper after diaper, bottle after bottle, nap after nap, to unimaginable test after test, medication after medication, hospitalisation after hospitalisation. After two months, Xavier comes home to stay with a strong, beating heart. And Epilepsy. And Cerebral Palsy.

As he grows and the severity of his challenges manifest, we are often told by doctors, therapists, friends, even strangers what great parents we are. How brave we are. I don’t see it. Since when is loving your child and doing your best by him “brave”? If anyone had courage, it was Xavier—still not able to hold his head up, hold a toy, hold me. Taking medication twice a day that no one under two was ever meant to take. But they make 60 seizures a day dwindle to two, then none. Xavier is alive, fighting, growing and smiling. He is my hero in every way.

Even though his care is overwhelming, after a year of feeding, sleep and gastrointestinal issues on top of doctor’s visits and therapies, I do find what I feel is “courage.” The courage to have a second baby. Although we’d long agreed to having two kids, Warren didn’t realise how the scope of Xavier’s needs made me waver. He hadn’t for a moment.

When I get pregnant again, Warren is working, so I go to the first ultrasound alone. The doctor does not print out a photo. Instead she refers me for a 3D ultrasound and CVS (Chorionic Villus Sampling—the earlier, riskier version of amnio). She hopes what she sees turns out to be nothing on the more-accurate 3D, and wants our first photo to be a “happy” photo. We go and are met with all manner of paperwork: genetic arrays, state reporting, liability waivers. After almost two years with Xavier, we are pros at “distill your worst days and sign away your rights here, please” forms. Oddly, the odds don’t scare me anymore, as I’d learned first-hand I could beat odds one day then be blindsided the next. I just need to know what’s up with baby number two so I can decide what to do.

That’s when I get honest and acknowledge that the reality of raising a special needs child has pummelled my irrevocable “keep any heart beating” bravado to dust. The woman I did not think I was—one who could terminate a pregnancy—rises within and makes herself known.

Now, I understand courage in a new way. It’s not just rushing into a burning building or taking a bullet. It’s also being able to admit one’s limits. I could face potential censure from family, society, my husband. And definitely myself. I thought of friends who once faced similar circumstances. Not until my own “Sophie’s Choice” moment did I fully grasp the courage it took for them to choose not to have a child with catastrophic health issues. To possibly live a lifetime filled with guilt and regret, but to understand that’s better than being a martyr to idealised notions of right and wrong. Courage, I learned, does not guarantee positive outcomes, or end pain, anger or fear. But it does allow you to face difficult truths. Change your mind. Accept yourself where you are.

My unborn daughter, the tests showed, was fine. I was eternally grateful to be spared that decision, or to ever have to tell anyone about it. But today I see that courage can also be sharing a truth you don’t have to or want to share, but do anyway because it might help another discover their own. And it might make you come to terms with yours. Courage, in time, can be a portal to grace.

Lori Lakin Hutcherson

Lori Lakin Hutcherson is a screenwriter from Los Angeles, and the founder and editor-in-chief of Good Black News.

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