Even if they don’t stay long, ‘people come into our lives for a reason’
After almost 30 years, my late son continues to make an impact
“Wicked” is the musical movie superstar of the moment. I loved “The Wizard of Oz” growing up, and while I haven’t seen the wildly popular adaptation on stage or screen, it’s impossible not to know at least some of the music.
Stephen Schwartz, composer of both the score and lyrics for “Wicked,” hit the bull’s-eye with “For Good,” a colossal hit:
“I’ve heard it said/ That people come into our lives for a reason/ Bringing something we must learn.”
They don’t always stay long.
Hello and goodbye to a simpler life
As 1995 wrapped up, our family moved to a rural setting in the North Carolina mountains. Primed to appreciate the stunning beauty and a simpler life, my husband, Randy, and I soon learned that our family of four would be expanding by one surprise bundle of joy!
That was certainly not the “simpler” life Randy and I had envisioned, but God surely knew what he was doing. Blessed with a beautiful baby boy on May 18, 1997, we adjusted handily, in awe that Jeffrey was so easy. We considered it a bonus for drawing newborn duty in our 40s.
Jeffrey’s quiet cry, tendency to fall asleep after nursing only briefly, and belly breathing had a name: SMA. I had taught children with orthopedic and multiple conditions but was unfamiliar with SMA. The thought of Jeffrey needing a wheelchair, while unexpected, didn’t scare me.
What terrified me was the prognosis. According to the pediatric neurologist, we’d be saying goodbye to Jeffrey long before preschool. The tears gushed before I could fully comprehend what his words actually meant.
I had no clue what God was thinking, but I did have a question for him: “Why give us a beautiful, unplanned baby, only to take him away?”
It would take a few months for me to grasp the why.
“… people come into our lives for a reason/ Bringing something we must learn.”
Jeffrey brought that something. He just didn’t have much time to share it.
A few lessons from Jeffrey and SMA
Our brief active SMA duty was only the beginning of a journey unlike any other. This chapter changed our lives — my life — in ways only an assignment of devastation could.
I pulled out all the stops, learning to pray like never before because, well, I hadn’t needed to save anyone before. When SMA’s insidious nature ramped up its game, I did likewise, praying initially for anything to save Jeffrey, and later for his comfort. I prayed for stamina, good health, and trust in God’s plan for me (as Jeffrey’s mama and nurse) and the rest of the family. My prayers were answered.
Despite plenty of chilling episodes in the brief active portion of our assignment, Randy and I remained relatively upright as we attempted to maintain some semblance of a routine for our older children, Matthew and Katie. Granted, we were rattled plenty of times, but reminding myself that God, not I, was in ultimate charge was a game changer.
I learned to appreciate people appearing at just the right time. They included the nurse who wrapped me in a comforting embrace after Jeffrey’s third episode of respiratory arrest, our extraordinary hospice nurse, and the funeral home director who came for Jeffrey’s lifeless body with compassion and a blanket in hand.
Thanks to then Families of SMA message boards, I connected immediately with fellow SMA families, reaping emotional fortitude and forming lasting bonds, along with finding a new best friend in the mix. Fellow teachers and even a favorite student from my days at what was then the Brockman School cheered me on with cards, calls, and visits.
And our families? They certainly didn’t disappoint. Without hesitation, they stepped up to the challenge in one way or several.
I learned to notice signs only after Jeffrey’s death. I cannot imagine life without them now.
Jeffrey brought something to many in his short life.
“Who can say if I’ve been changed for the better?/ But because I knew you/ I have been changed for good.”
The ease of bonding between ‘special’ families
Our sweet, joyful Jeffrey in the summer of 1997. (Photo by Helen Baldwin)
Sometimes people experience effortless, instant compatibility in a relationship. One such instant bond exists among families facing daunting situations. I enjoyed a rapport with most of my students’ parents or caregiving grandparents. However, it was Jeffrey and SMA years later that provided me with genuine empathy for my students’ families. Because of Jeffrey, I’ve clicked immediately with others whose children faced different kinds of life-altering assignments and with those who have lost children.
Jeffrey’s influence remains evident in different ways.
“You’ll be with me/ Like a handprint on my heart.”
A clip from “America’s Got Talent” just so happened to appear one day in my search for something totally unrelated. Two moms, brought together by unfortunate circumstances — one losing her child and helping the other in the process — also shared an uncanny coincidence in their respective journeys.
Sweet Jeffrey graciously came into our lives for a reason. What a blessing.
“I know I’m who I am today/ Because I knew you.”
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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