I’m writing this on June 29, the 13th anniversary of my father’s death.
Remembering Dad today is impossible without including Jeffrey in my thoughts. Following his death, our family was reassured by one sign in particular that he had wasted no time in reuniting with his grandson. As my mother looked out of the window on her first night alone, two lights of unequal size, side by side, flashed on and off simultaneously several times. Curious to know if it might be a sign, she asked, “Is that you?” Only the larger of the lights came on. A few mind-boggling seconds later, the smaller one joined in.
We welcomed Jeffrey two weeks ahead of schedule in mid-May 1997. Expanding our family may not have been on the to-do list for Randy and me, but Jeffrey was a delight from the beginning. He basked in the adoration of his immediate and extended family. “Nana” and “Papa” were at a slight disadvantage, unable to leave the lodge they owned and operated for long periods, so if they needed to coo or to have a grandchildren fix, we obliged and went to them.
Just as our new routine was feeling comfortable, Jeffrey was diagnosed with SMA.
My brother Paul, who is a doctor, examined Jeffrey briefly on July 13 (Paul’s birthday). When he returned home that night, he searched the internet until he landed on the likely culprit for Jeffrey’s abdominal breathing, dull-sounding lung, and lack of reflexes: spinal muscular atrophy. Unbeknownst to me at the time, Paul broke the news to our folks. I’ve tried to imagine that conversation, and I’m thankful that Paul was up to the task.
My folks reacted to our new life-changing assignment in slightly different ways. Mom came to the house almost daily to hold and amuse Jeffrey while I made a mad dash to the bathroom, cleaned the suction machine, paid bills, tended to our other children, etc. The only prognosis an SMA type 1 diagnosis offered back then was an early death. It was excruciating for her to watch her child prepare for her grandson’s death, but she held herself together impressively, comforted by Jeffrey’s obvious contentment with his spot in our family and making the most of whatever time he had here.
My father continued to do whatever he could to help. Bringing food and running errands were easier for him, as he found it difficult to see Jeffrey and not worry that he was in pain. Regardless of my telling him that pain wasn’t an issue (outside medical intrusion, anyway), he popped over almost daily to see for himself. He showed up once to change a lightbulb and to peek in at Jeffrey through the window. He also wanted to be sure that the rest of us — primarily his first-born daughter — were holding up OK as well.
My folks sold the lodge and cabins and moved into their new house half a mile down the road from us in the fall of 2005. Eager to finally retire and enjoy the simple life in the mountains of North Carolina, we were all snapped back to reality with the discovery of pesky “masses” in my dad a mere three months after they moved in. Dad’s health took a nosedive despite assorted alternative treatments, which had begun immediately. My folks hadn’t unpacked more than the essentials.
During his 5 1/2-month earthly stay, Jeffrey radiated joy, contentment, resilience, courage, love, and trust. He often seemed to be looking beyond me, listening to someone or something on a different plane. Meanwhile, Papa had 73 more years to make an impact, and he used those years wisely — working and laughing hard, keeping his word, and striving to make someone else’s life a little easier in some way.
Jeffrey donned his wings late at night. Hours later, when we glanced achingly into the crystal clear night sky for a sign, we spied a twinkling light. Incredulous at the impeccable timing, we beamed — it was the perfect sign of Jeffrey’s arrival in heaven.
Almost nine years later, Dad took his final breath. In a state of numbness, Mom sat outside on the deck in the warm afternoon sun with her two granddaughters while the rest of us tended to matters inside. Since it was too early in the day for a twinkling star, I wasn’t surprised to learn that a white butterfly had been hovering around her. It wouldn’t be the last time, either.
But first, the two bright lights, beaming together. What a magnificent comfort it was to picture Jeffrey and his Papa in each other’s arms again, working together to watch over us.
Two bright lights, indeed.
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.
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