The month of November kicked off eventfully in 1997 in the wee hours of the morning when our electricity went out. Jeffrey, our 5 ½-month-old baby with spinal muscular atrophy (SMA), relied on blow-by oxygen and an oxygenator for comfort, and the power outage rendered both useless. I needed to rouse my husband, Randy, who was upstairs, without waking Jeffrey, who was dozing in my lap, or our daughter, Katie, who was asleep on the couch a few feet away.
That was easier said than done. I called for Randy as loudly as I dared, but only Katie heard me. Not fully awake and trying to orient herself from an unfamiliar sleeping spot, she fumbled around in the dark as I tried to explain what had happened.
Our son Matthew, also sleeping upstairs, heard the oxygenator’s alarm beeping. Thinking it was the fire alarm, he hurried down the stairs so quickly that he slid half the distance and bonked his head on the landing.
Randy finally came to and joined the hoopla. He managed to round up flashlights, candles, and matches so we could see enough to get the portable oxygen tank going.
In the faint light, I spied Jeffrey’s face. Besides looking eerily ashen as he had during the three episodes of respiratory arrest a month before, he was limp and not breathing. As his eyes rolled back, I pondered in horror that perhaps this was it. I thought for an instant that maybe God had provided the darkness so we wouldn’t see Jeffrey’s departure. But I’d already seen plenty, and I decided that surely this wasn’t the way our journey was ending. We were all together as we’d wanted, but hadn’t we also included in our prayers a request for a peaceful flight for Jeffrey?
While Randy called the electric company, Matthew struggled to keep the oxygen tubing close to Jeffrey’s nose. Katie attempted to keep the flashlight steady as I gave Jeffrey morphine and suctioned. I didn’t think to appreciate the battery enabling the suction machine to function.
Thanks to our collective efforts — and a few more from his guardian angels — Jeffrey began breathing again. The rest of us were left drained, but the day had just begun.
And so had the end.
That day eventually transitioned into the second day of the month, with morphine and suctioning leading the way. What little remained of Jeffrey’s sucking and swallowing muscles had vanished, so I squirted milk and water into his mouth in an attempt to keep it from becoming uncomfortably dry. He threw a curve ball into the mix when he awoke alert and nursed easily before requiring more morphine and suctioning.
He did not look good.
On the third day of a November that already seemed a month long, red blotches appeared and disappeared. Jeffrey needed more morphine than the schedule allowed. Our hospice nurse would have to bump it up — again.
The going-away gown that my sister-in-law, Jaymie, had made arrived that morning. The gown and accompanying pillow were simply exquisite. Katie squealed when she saw the gown, thinking how beautiful her American Girl doll would look wearing it. She sobbed when she learned it was for her baby brother.
In “The Jeffrey Journey,” my book about our baby’s time with us, I wrote:
“At noon, Jeffrey needed morphine. An hour later, he needed morphine again and suctioning, and a monumental turning point occurred: He clamped his lips shut for both the morphine and suctioning, pleading with his dark chocolate eyes for permission to be excused. That signaled the absolute end of my composure, as he had just provided proof enough that he was ready to exit this madness. I managed to get two more morphine doses into his mouth during the afternoon despite his lack of cooperation, but the thought that he was wanting out was simply unbearable.
“This assignment would not be over a moment too soon.”
The morphine and suctioning marathon never eased up. At 10:43 p.m. on Nov. 4, Matthew and Katie slept, and Randy updated his mother from the phone upstairs. Jeffrey was perched on a pillow in my lap in the chair that held myriad memories of his brief stay. I looked into his soulful eyes and realized that while I had prayed, and at times even begged God to take him, I hadn’t thought to give our little warrior permission to leave.
I mustered whatever I had left and reminded Jeffrey that we loved him more than we could comprehend, and that we would never forget him. I told him that he could go, and that we would be OK. Somehow.
Two breaths later, Jeffrey’s eyes said thank you, and he was free.
Free from the clutches of SMA, that is — never from our hearts.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.