My Son Is Not A Burned-Down House

Amy Whipple Special Needs

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One July afternoon, I arrive for daycare pickup to find my two-year-old’s eyes rolled — seemingly stuck — up and to the right.

“Hey, buddy,” I say, stroking his cheek. “Are you in there?”

WD’s eyes slide back and he rocks a few times. His nurse reports 15 minutes of this and suggests calling the neurologist. But we’ve done this before, the previous spring, and I decide instead to drive us down the street to Children’s Hospital.

WD was born with schizencephaly — the result of a fetal stroke — which means he is missing part of his brain. Because of this, he has intractable epilepsy, cerebral palsy, is non-verbal, non-mobile, and exclusively tube fed.

The day I picked up WD from the hospital as a foster baby — he, just shy of eleven months — the nurses couldn’t stress enough the importance of a rigorous twelve-hour medication schedule. A few weeks after that, his neurosurgeon said, in no uncertain terms, that the seizures could kill him. A malfunctioning shunt could kill him. And though I always feel like I’m overreacting by taking him to the ER, I’m not.

In the ER, a nurse ushers us into a room. WD’s eyes are hard-locked, the whites dry-red. I place him on the gurney, and, as if given permission, his body electrifies with a tonic-clonic seizure.

The room fills with people. Nurses with lights and warming packs for WD’s whisper-thin veins that hide inside his sturdiness crowd around the gurney. Doctors assist the nurses, ordering which medicines to push if they ever find a vein that doesn’t immediately blow. Ordering tests to run for blood that won’t seem to come out.

Everyone is militaristically efficient and maternally assuring. They tell WD it will be over soon, to hang in there. They tell each other they think they’ve found a vein that might work.

A doctor asks that I stand off to the side. I count twelve other people in the room, each of them with no other purpose in that moment than to save my son. Someone asks if I’m okay. I say yes. I have to be.

Through the tangle of arms and hands, dry needles and sticky wires is WD. Three feet tall. Thirty-ish pounds. His lips sputtering. His face red, pulsing. His arms, his legs, his belly tight with muscles I didn’t know he had. His eyes, so, so far away.

Frustrated, they jam a needle of versed, a benzodiazepine, into his chubby thigh. He continues to seize.

Finally, they get a vein. They deliver ativan, another benzo. They flood his body with another seizure medication. His body settles, his eyes close. It has been 45 minutes, an hour. The room clears, his blood off to test. He goes to CT. X-ray.

Double-whammy: aspiration pneumonia and a failing shunt.

They admit him and schedule a shunt revision — a beautiful/concerning word to remind us that medicine is as much faithful art as it is science. A few days later, less than two weeks before Adoption Day, I roll him back out into the summer sun to the tune of $52,000.

We expect astronomical numbers from surgery. That kind of hospital stay nestles into the cost range of new cars, houses, college educations. However, I’m not in the market for new cars, houses, or college educations two or three times a year. I’m in the market of whatever it takes to keep my son alive.

There is much to be had from a conversation about inflated medical costs, but not right now. These are things that happened, that are happening, and have already been priced. When our elected officials threaten to upend Medicaid, they are threatening my son’s life. Full stop.

WD’s daily life is a medical life. Each month, he receives $508 in feeding supplies, $634 in medication, $7,500+ in daytime care during the work week, and $17,500+ in therapies. All told, it costs about $800 a day to be WD. No appointments, no equipment, no fallout from an otherwise ordinary oozing ear or runny nose. Just waking up each morning and going to bed each night costs $800.

We ask that children be born regardless of circumstance and be raised in good homes. They cannot be raised if, on the insistence of their birth, they are considered — in the words of Senator Toomey — burned-down houses. Children are not burned-down houses, and they cannot be raised if they are left to die.

Without proper care, their parents cannot know the hard-won, pure joy that is distilled in my favorite daycare bulletin board that proclaims, “I Can DO Great Things!” It’s crammed with pictures of our children in all their strengths and weaknesses, children who work around delays and scares, tubes and traches, chances and side effects. They can roll, walk, use a spoon, splash in water, sign words, laugh — a mighty accomplishment for each. And there’s my boy, his hand on top of a wooden knob. The sign next to it says, “WD can pull a puzzle piece out!”

It’s hard to look at your child and know there’s a price tag on his head. That there is a vast monetary cost for his giggles when I tickle his ribs, snuggling while reading books, his hand wrapped around my finger as I carry him down the stairs, his raised eyebrows when I walk into a room, the garbled vowels in the cadence of “I love you.” Harder still is to imagine the world without him.

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Amy Whipple

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