Deciding on a column topic isn’t always a simple matter. Sometimes, I’m shoved into a new direction with a thud. Other times, the nudge is light as a feather. In this case, it was a feather.
A gift of love
Many years ago my sister-in-law, Jaymie, made a beautiful stained glass hanging of a bluebird for my folks. We’d already suspected her talents might be endless, but this was particularly impressive.
Meanwhile, my mother, JoAnn, exercised one of her extraordinary gifts on the piano and keyboard. Besides a sharp wit and memory, Mom was blessed with uncanny musical genius. Our daughter, Katie, dubbed her the savant of the family.
Mom released the CD “Do Not Disturb” in 2013. She ended it with the song “Little Bird,” inspired by Jaymie’s stained glass. In a rare twist, she added lyrics. They are perfect.
“Little bird, do come to me —
Show me things I need to see,
And help me know how they should be;
You’ve seen the whole wide world!
“Tell me things I need to know —
Whisper close before you go
The secrets that you cherish so,
The wondrous wisdom in the pearls!
“I’ll tell you all you need to know —
I’ve heard the secrets coming from above.
Give a smile and lend a hand
And always walk with love.
“With God’s hands you’ll feel your way,
With His smile you’ll never stray,
And with His love you cannot fall,
And with His love you’ll know it all.
My “little bird” is Jeffrey, my late son who had SMA.
Family from the first
My cousin Jeff and his partner in life and music, Barbara, made their mark all over Fort Worth, Texas, and beyond. Their charm, wit, and talent as a musical duo earned them an impressive following.
A few years ago, the stars aligned, and my doctor/tech guru brother, Paul, captured Barbara singing “Little Bird” to Mom’s music. We were thrilled that the family branches had connected in a musical way and eagerly anticipated future collaborations!
Earlier this month, Barbara went into cardiac arrest and a coma. Eight days after soaking up the musical memories she and Jeff had made together, this songbird was apparently satisfied with the mark she was leaving and snagged her new set of wings.
Even though we weren’t around Barbara more than a handful of times over the years, she was family from the first hello. It was some time before she revealed a grasp of the loss we felt with Jeffrey. The last time I heard from Barbara was her comment on a recent column:
“I’m reminded, when I read things you have written, what a wonderful writer you are, how you capture in few words (more poet than essayist) the impact of the horror that washed over you all at diagnosis, but also the depths of despair at the outcomes ahead. I know well that horror, that dread, (in a completely different scenario of loss and grief), but I see, 40 years later, how that singular event, that life without my loved one, has shaped my existence, played out in the rest of my life, my choices. You bring to awareness how precious it all was, the moments with your angel, the ‘assignment’, the completion of the task, (the discovery who we are in the aftermath?), a wilderness of uncharted territory day to day, while you also rally and nurture the other children, be strong for the husband, the extended family, and slowly meet the ‘new you’. Thank for laying your soul on the table once again, an intricate specimen of tragedy and triumph. We take from it the bas relief of sorrow and joy in equal measure to keep us tempered, like steel in the fire. …”
A gentle reminder
Jeffrey is buried on top of our little mountain. I walk up as often as I can to visit and ponder whatever. On my latest walk up, and during my pondering time, “Little Bird” remained front and center.
Regrouping a bit on my trek back down the mountain and mulling over this column’s topic, I was “nudged” to look down on the trail.
And there it was.
But of course. Not just a feather — one with beautiful blue. And a small one at that.
Thank you, Little Bird. You were right. It’s good night, not goodbye.
JoAnn Derden, Composer/Barbara Taylor, Singer
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.