Reflecting on our SMA assignment and lessons from Dr. Seuss
'You’ll miss the best things if you keep your eyes shut'
Written by |
March seems to stretch to infinity, but one bright spot is the promise of spring. It’s also National Reading Month, in honor of Dr. Seuss’ birthday.
Our daughter-in-law, Jill, is a literacy specialist at our elementary school. She’s always involved with school projects, voluntarily or otherwise. During a recent student reading event, I saw the Dr. Seuss tribute she helped set up in the school’s lobby.
The exhibit promptly unleashed Dr. Seuss quotes.
“Today you are you! That is truer than true! There is no one alive who is you-er than you!” (“Happy Birthday to You!”)
“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” (“The Lorax”)
And, from “Oh, the Places You’ll Go!,” what has become the quintessential graduation send-off: “You’re off to great places, Today is your day! Your mountain is waiting, So… get on your way!”
As a beginning reader, I adored Dr. Seuss, but the real fun was reading to my students, our children, and our grandchildren. The ridiculous, catchy rhymes and heartfelt messages — believe in yourself, hang in there, take care of the planet! — have left an indelible impact.
A quote from “I Can Read with My Eyes Shut!” packed a surprising punch: “You’ll miss the best things if you keep your eyes shut.”
He was right.
Excitement, optimism … and devastation
In the middle of May 1997, our family gleefully welcomed Jeffrey, a surprise addition and baby brother to Matthew, then 10, and Katie, then 7. Matthew was playing baseball, and my husband, Randy, was establishing a new business during an unplanned coaching hiatus, but we sailed along otherwise, enjoying the easiest newborn around.
Eight weeks after Jeffrey’s arrival, Randy asked my physician brother, Paul, to examine Jeffrey’s abdominal breathing. Paul somberly explained that Jeffrey had a dull-sounding lung and no reflexes.
In a bit of irony, Jeffrey was scheduled for a well-baby check the following day. Unbeknownst to us, Paul determined the probable diagnosis and alerted the pediatrician to his findings. She then contacted several pediatric neurologists. The first to respond agreed to see us that afternoon.
Off to Brenner Children’s Hospital we went. (“Oh, the places you’ll go …”) Randy and I waited with Jeffrey for five excruciating hours as medical students streamed into the room to assess the tiny new patient. My optimistic self confidently banked on my past experience teaching kindergarteners with various disabilities to handle whatever Jeffrey would need.
The neurologist arrived that evening. He picked Jeffrey up, holding him in prone (tummy) and supine (back) positions, checking for reflexes. There were none. He also checked for tongue fasciculations. They were present.
Five minutes later, the neurologist gave his findings a name, albeit an unofficial one until confirmed via testing. He believed Jeffrey had a severe case of the most severe form of spinal muscular atrophy (SMA), SMA type 1.
Before we could regroup sufficiently to ask questions, he obliterated the rest of our props. He explained that the motor neurons in the spinal cord and brain stem, which send signals to the muscles, are affected, and that the muscles responsible for controlling movement, sucking, swallowing, and breathing would eventually stop functioning. There was no treatment and certainly no cure.
Jeffrey probably would not see his fourth birthday.
What???
If only I could shut my eyes and pretend I’d just had a nightmare.
Choosing strength over destruction in our SMA assignment
There’s another quote commonly attributed to Dr. Seuss: “When something bad happens, you have three choices. You can either let it define you, let it destroy you, or you can let it strengthen you.”
Jeffrey’s big sis, Katie, especially loved reading to her favorite baby brother. (Photo by Helen Baldwin)
With the support of our incredible family and friends, online connections to other SMA families, and an increasingly firm belief in the power of faith and prayer, we clawed our way out of the pit of devastation and scrambled to prove the neurologist wrong. We experimented with a few unorthodox treatments in the name of desperation and staunch determination to leave no stone unturned.
On a crystal clear night, a mere 114 days later, Jeffrey snagged his wings and took flight to the perfect place. If my eyes had been shut, I would have missed the twinkling star that kicked off my awareness of signs.
This year marks Jeffrey’s 29th birthday, diagnosis day, and “angel” anniversary. It’s difficult to comprehend that so much time has already passed. Likewise, it’s impossible to comprehend life without SMA. I’ve met extraordinary families, grown closer to God, and witnessed comforting signs. I know that Jeffrey is free and happy.
Kevin Schaefer, fellow SMA News Today columnist (and more!), is the son of the best friend with whom I connected solely because of SMA. Kevin wrote, “All of us say that it’s a club none of us volunteered for, but it’s one we can’t imagine our lives without.”
Somehow, I think Dr. Seuss would approve.
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.
Leave a comment
Fill in the required fields to post. Your email address will not be published.