When a nod to life’s most important work happens years later
A musical legacy, a book, and SMA converge in this series of unexpected events
My late mother, an accomplished pianist named JoAnn Derden, used to perform double-piano concerts with her sister, who insisted that the music — intricate, demanding classics — be memorized. Mom begrudgingly obliged.
When those stressful days ended, Mom enjoyed improvising and playing two-piano music with me — no memorization necessary, not even during performances.
Mom’s two concert grand pianos were eventually replaced with two digital grand pianos. What a new world they opened! With the mere push of a button or a simple key maneuver, we could instantly put ourselves on stage, accompanied by an orchestra! We sounded like pros as we covered old favorites: Broadway, standards, Streisand, and much more.
We even composed some songs. We had a great time with our newfound productivity, and when professional keyboards were added later, we were on a roll.
In my column, I’ve often mentioned my optimistic nature. Though it’s not always easy in the midst of devastation, it’s crucial for my mental and emotional health to appreciate what’s positive in life — or to track it down, if necessary. I was recently reminded that such appreciation can spring forth at any time.
‘Dreams’ and ‘The Jeffrey Journey’
My husband, Randy, and I consulted with a pediatric neurologist for our baby, Jeffrey. While we knew something wasn’t right, the diagnosis of SMA type 1 came from left field. Like most newly diagnosed SMA families in 1997, we were clueless.
As horrific as the neurologist’s description of SMA sounded, it was a mere blip compared with the prognosis: probable death by age 4 (which the genetics counselor revised the next day to age 2).
Mom wasted no time preparing a collection of original songs on a cassette for her final grandchild. Jeffrey loved them until he snagged his wings at 5 1/2 months old. “Dreams for Jeffrey” later became Mom’s first commercially duplicated CD of her original music.
“Dreams” accompanied the first edition of “The Jeffrey Journey,” a book I wrote about our abbreviated SMA assignment. The response to the book and the CD was favorable from both inside and outside the SMA community.
My father’s death, my mother’s awakening
Life stayed full. Randy coached high school football, and our children, Matthew and Katie, entered high school and college. The health of my father, Elton, began declining shortly after he and Mom moved into a house down the road from us. In a few short months, Dad’s earthly time ended, and Mom was hurled into solo mode.
Her return to the keyboard produced the CD “Grief: Loss and Recovery,” a heartfelt masterpiece unlike anything she’d done before. As was typical for her, she wrote nothing down.
Those who heard the music raved about it. An artist friend said she painted while listening to “Grief,” as it was the only CD she never tired of hearing.
Here is “Until We Meet Again,” from 2009’s “Grief: Loss and Recovery”:
With “Grief” under her belt, Mom’s confidence led to the CD “The Story of Noah’s Ark.” With the addition of a few special effects expertly placed by my brother, Paul, “Noah” is as much of a showpiece as “Grief.”
Here is “Prologue,” from 2010’s “The Story of Noah’s Ark”:
“Noah” received a glowing response from the same folks who raved about “Grief,” but Mom was disappointed that she couldn’t seem to find a broader audience for either one. I’m confident there’s an audience for both and that we’ll find it some day.
Appreciating positive feedback years later
A few members of BioNews, the parent company of SMA News Today, formed an informal book club. I’m not a participant, so imagine my surprise and delight to learn that the club had chosen “The Jeffrey Journey” as September’s book selection! The plan was to find a meeting time when I could join the discussion.
Before the Google Meet date, a woman who had received Mom’s “Grief” and “Noah” CDs from a mutual friend sent a note. She heaped praise on “Grief” and insisted it should be a movie soundtrack. The next day, a mutual friend texted that she was having all her art students paint to “Noah.” She likewise deemed it suitable as a movie score.
I cannot explain in words how buoyant my heart feels hearing glowing comments about Mom’s music almost 15 years later. I greatly miss being able to play together, but I know that Mom, who passed away in early 2022, is delighted that her music is still making an impact. I hope she’s equally optimistic that it will reach more folks in due time.
Meanwhile, the book chat was so much fun! It was a small group: Halsey Blocher, who has SMA and is the lead of my group of columnists; Marisa Wexler, who writes about SMA and more for the science side of BioNews; and Marisa’s mom, Susie. Not only was it a delight to “meet” the three women, it was extremely encouraging to receive such positive feedback about the book from all of them, 20 years after it first came out.
Fifteen years, 20 years — it’s never too late for a little appreciation to boost the soul.
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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