The Sounds of Silence: Sometimes Deafening, Sometimes Golden

BARK! BARK! WOOF! WOOF!

The guest staying in our rental cabin had come down to the house. Our dogs, Honey and Maple, were banished to the kitchen until our guest returned to her car after a brief visit. I sat down to get back to work.

BARK! BARK! WOOF! WOOF!

I had barely touched the keyboard when our four-legged alarms started up again. Thinking the cabin guest was simply pulling out of the driveway, I ignored the commotion until my eye caught a friend standing at our front door. Rex creates signs, birdhouses, and more from all kinds of scraps. He had driven up the mountain to see what treasures he could salvage as he helped Randy, my husband, demolish a ramshackle shed.

(Cue my slightly premature “Hallelujah!” for the day I reclaim our house from the stacks and piles of bee- and honey-related “stuff” after it’s moved to the future honey workshop.)

I steered Rex toward Randy and “The Project” and returned to the keyboard. The computer sits in front of a window close to the action.

POW! POW! POW! BUZZZ! BUZZZ! BUZZZ!

Thankfully, the closed window substantially muffled the destruction derby outside. Doubly thankfully, it didn’t take long before I quit noticing it completely.

Honey and Maple were finally snoozing, and I could think.

Ahhh … silence.

***

Parents (and grandparents!) of newborns anticipate a lot of crying with the territory, but even seasoned pros can be jarred by the amount and intensity. Crying jags usually signal that all is pretty normal, if not sane. While the attempt to calm relentless squalls is exhausting and nerve-wracking, I silently celebrated those squalls when caring for our grandchildren, Clara and James, in their early days and months.

***

Our first baby, Matthew, was a voracious nurser and quite vocal in expressing that he wanted or needed something. I was 32 and naïvely presumed I could read his mind. I was his mama, after all! I presumed that if he’d had a nap, cuddling, or a diaper change, his hearty wailing meant he was famished. It took a long while before I determined that his wails sometimes meant his belly was stuffed to the gills and beyond.

Three years later, our daughter, Katie, wasted no time demonstrating that her lungs could shatter glass.

Our ears survived those early noisy times. We had two healthy children, and we were grateful.

***

Learning that our family would expand in the spring of 1997 was a mind-boggling surprise in all ways, but we were ready for the big day. Jeffrey arrived two weeks early and instantly made a name for himself with his quiet nature. He only whimpered or cried with a whisper, no matter what he needed. Hungry? Sleepy? In need of a diaper change? He never fussed.

We noted his faint coughs and sneezes, appreciative that God had blessed us with such an unbelievably easy, calm baby. I had wondered how our aging ears would handle the typical newborn crying jags.

Alas, there were no typical newborn crying jags. Jeffrey wasn’t a typical newborn.

***

Spinal muscular atrophy spun our world upside down and inside out two months after Jeffrey’s birth. His cries and coughs, already weakened, would only get weaker. Ditto for his sucking and swallowing.

And breathing.

SMA dictated that we procure a suction machine, which we put into use shortly after the diagnosis. Our attempt to utilize a BiPAP machine didn’t go as planned, warranting the addition of an oxygenator and blow-by oxygen. And morphine.

The sounds spewed by the medical machines filled my head, replacing baby coos and crying — well, other than my own, anyway.

WHIRR! WHIRR! GRRRR! GRRRR! GURGLE! GURGLE!

The saving grace was the collection of little songs my mother wrote for Jeffrey upon learning his earthly stay would likely be brief. “Dreams for Jeffrey” was soothing for Jeffrey and me, and it helped balance out the surreal racket of the machines signaling his impending death. I played the cassette tape repeatedly until I feared it would snap in two.

I needn’t have worried.

***

After Jeffrey’s final breath at 5 and a half months, Randy turned off the oxygenator and blow-by oxygen for the first time in a month. I turned off the cassette player and unplugged the suction machine.

No machines, no Jeffrey, no comforting little songs. The only sound was Randy’s incredible efforts to make a few requisite phone calls.

The silence was, as they say, deafening.

***

We are blessed that Jeffrey’s resting spot is on top of the little mountain on our property. Over the years, it has become a sanctuary, where I can sit and ponder and hear nothing but birds, if that. I can talk to Jeffrey, God, and myself, or I can just be still.

Clara and James test their lung power frequently. I love that they can, but that silence on the mountain?

Pure gold.

***

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, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.