Our SMA assignment and the coming and going of ignorant bliss
A columnist describes the period around her late son's difficult diagnosis
I’ve often said that it’s probably a good thing we don’t have a crystal ball. While sometimes it might be beneficial to know what lies ahead, if I could choose a magical power, I’d opt for a wiggly nose like Samantha on “Bewitched.” That said, I can think of plenty of instances in which remaining in the dark is a godsend.
“Ignorant bliss” is what they call that darkness.
My husband, Randy, and I were momentarily and unwittingly protected in that very darkness with the early arrival of our third baby, Jeffrey. With a newborn, literally everything down the proverbial road is unforeseen. Consequently, I did what I’d done when our older children, Matthew, then 10, and Katie, then 7, were born: I prayed. I asked God for guidance, a healthy baby, and enough common sense (and perhaps a little luck) to get us through to Jeffrey’s adulthood and beyond. Given his mostly uneventful birth, it looked like we were off to another good start.
Our ignorant bliss would last eight weeks.
Alyssa Silva, a fellow columnist here at SMA News Today, recently described a trip to her aunt and uncle’s house at the beach. This beloved destination provides her with a place to regroup and recharge — in ignorant bliss — from at least a few of SMA’s myriad challenges. As she wrote, it’s the “closest thing I have to hitting pause for a while.”
If only I could’ve hit pause on July 14, 1997.
The ignorant bliss is about to end
Randy asked my physician brother, Paul, to examine Jeffrey during a visit on July 13, 1997. He was concerned about Jeffrey’s abdominal breathing, which was present at birth. None of the medical folks had shared that concern, though. Since I was still held captive by an odd fog that was present during the entire pregnancy, I subsequently considered Jeffrey’s breathing a nonissue.
That fog evaporated abruptly when I noted the somber expression on Paul’s face after Jeffrey’s exam. He’d found a dull-sounding lung and no reflexes. He explained that the pediatrician, whom we had planned to see the next day for a wellness check, would likely refer us to a pediatric neurologist.
In a stupor, I rocked Jeffrey the rest of the day. I panicked late that night as I jotted down notes about Jeffrey that had seemed insignificant before Paul’s exam. The next afternoon, July 14, Randy and I headed to Brenner Children’s Hospital for a consultation with a neurologist.
A tiny bit of optimism before it’s extinguished
My optimistic tendencies kicked into high gear. Suddenly, I understood my placement at Brockman School many years earlier, teaching kindergarteners with orthopedic and other serious conditions. During the 90-minute drive to the hospital, I remembered my delightful students whose challenges involved a wide range of issues with communication, mobility, motor skills, self-care, and sometimes cognition.
I didn’t consider my final year at Brockman, the one where my teaching necessarily shifted to skilled nursing. My duties that year involved feeding tubes, suction machines, and much more.
Actually, I should say that I didn’t consider my final year at Brockman until that evening, when the neurologist sat us down across from him. In a conversation that still seems surreal, we heard “Werdnig-Hoffmann,” “spinal muscular atrophy type 1,” and “they’re usually gone by age 4” in short order.
Blindsided, that evening and in the coming days, Randy and I were assuredly ignorant about the ramifications of an SMA diagnosis, but any bliss was history.
Losing a child with and without the help of ignorant bliss
Several years ago, I participated in a few panels with mothers who had lost children. The first year, one panelist shared the story of her baby who hadn’t been able to leave the hospital. Another panelist lost her 7-year-old-son Bryson when he inadvertently stepped into rushing floodwater.
Once Randy and I heard the prognosis for Jeffrey (which a genetics counselor had by then halved to two years), there was no escaping the fact that, barring a miracle, our sweet baby wouldn’t be with us long. While that knowledge hovered over us like stormy skies much of the time, I thanked God for the heads-up.
Meanwhile, in an unexpected revelation (to me, anyway), Bryson’s mom said she was genuinely thankful that her active young son had lived life to the fullest until the very end. I was floored at her stoic acceptance of her own assignment, as I’d had trouble merely introducing her after learning about Bryson. “Ignorant bliss” was an understatement for that mama.
Because God had chosen to ease us into saying goodbye to Jeffrey, I fully appreciated having him with us for his remaining 114 days. When his earthly stay ended in my lap late at night on Nov. 4, 1997, I also appreciated the fact — albeit in utter numbness — that our beautiful boy was safe and free from the clutches of SMA.
And that was without courtesy of ignorant bliss.
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.
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