I'm not sure what woke me up. Perhaps it was my son's odd breathing. That rrrrrrrrrrapa rrrrrrrrrrrrapa, like a notched stick in a preschool music class.
I turned on the light and Mack looked at me with fear in his huge blue eyes. He was a skinny little 3-year-old who could never get enough calories no matter how much Pediasure I bought.
I saw his flexible chest cave in with each breath instead of puffing outward — much like it had in the ICU after he and his twin were born 10 weeks too early.
Loud, seal-like barking cough.
OK, croup, I thought. I know croup. Get inside a bathroom with a hot shower on. No, get outside to fresh, cold air.
This is wrong, my mama brain cried. Get help.
I woke up my husband. We debated briefly but my mind was already racing towards the emergency room. My husband would drive, and I would hold Mack in the back with the window down, and the December air would blow on his face, and we would pray that his breathing would improve, and that we wouldn't need the emergency room by the time we got there.
I rushed around to grab a couple things for the trip. It was then I finally remembered: Mack's identical twin lay on the top bunk, eyes open but still.
Jasper, a very active 3-year-old boy, was never still. Not even in his sleep.
"Jasper, honey, are you OK?"
No response. Just staring at the wall, laying on his tummy.
"Jasper." I laid my hand on his pajamaed back, jostled him gently. "Jasper."
And then he said, in his tiny toddler voice, so softly, but so clear, like a note that breaks a rock in half:
"I don't want my brudder to die."
Shadow of a life?'
Children like mine have always reminded me of the story of Icarus, the legendary boy who flew too close to the sun and plummeted to his death in the sea. Restored to life by modern medicine, our children seem to flutter back and forth across the valley of death. They float in and out of the hospital, always too close to the sun.
Especially in winter, I frequently log into Facebook and someone in my local community or in one of our large groups is announcing the death of their little one. It is a reality that those around us, living their typical American lives, don't know exists. Medical mothers are in an unseen war with death, casualties mounting up left and right, as we duck and dodge.
The callous among us — and I painfully admit that I used to be one of them — believe that a disabled life is a shadow of a life, a life not worth living. So, what does it matter if they die?
Echoes of this are heard in reports of COVID-19 deaths, which frequently include whether the deceased had pre-existing conditions.
Let me tell you what I've seen: The devastation when a child dies is not lessened by the existence or "pre-existence" of conditions.
First visit; not the last
When we got to the emergency room, I carried Mack in my arms to the triage nurse.
This would end up being the first time that I brought my medical problem to a professional and they reacted with the sort of urgency and alarm that I had always seen on TV but never, ever experienced in real life. The nurse took one look at Mack's labored breathing and began running toward a treatment room. In a daze, I followed, still unsure I had permission to let go of the calm-reasonable-person-who-should-be-listened-to-because-this-is-a-genuine-emergency persona. He turned back to see what was taking me so long and barked: "RUN!"
So I did.
Mack got a breathing treatment and stabilized over the next couple hours. He would go on to visit the hospital again for another bout of croup the next winter and would probably have needed to go several more times — including a couple of weeks ago — if we hadn't learned several techniques to improve his breathing and mucous management when he gets sick. These were for the regular colds and flus that no one used to think much about.
As the delta variant rages outside, my family, like many others with medically fragile children, has gone back to hiding in our house.
We cannot catch anything now.
There is nowhere to run to.
Shasta Kearns Moore is a former Portland Tribune reporter and currently publishes MedicalMotherhood.com, a weekly newsletter for those raising kids with disabilities. A longer version of this essay ran on MedicalMotherhood.com on Aug. 15. Her children's names have been changed in this story.
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