Seventeen years ago, SMA provided us with another date to remember when our sweet Jeffrey took his last earthly breath. The day had been memorable otherwise, too, with an unplanned visit from my incredible sister-in-law, Jaymie, and my niece, Bethany, for what would be their final visit to see our little guy. It was Bethany’s 9th birthday (happy birthday, Bethany!), and she’d been a devoted cousin. I thought she’d had to play hooky to make the trip, but I was informed it was Election Day. That was the first I’d heard of it (I’m well aware of this one, tho!). Thankfully, my mother (who had come over daily to help however she could) was there to prepare Jaymie and Bethany for what had become the norm for Jeffrey over the past few days - suctioning, morphine, suctioning, morphine, repeat, repeat, repeat. When Bethany spied her precious baby cousin’s shockingly frail, failing body, she retreated to the safety of the computer room, where Katie joined her when she returned home from school. I don’t know that they said a word; Katie adored Bethany, and just sitting beside her was likely sufficient. The fantastic school crew who had taken such good care of our family brought dinner and grocery coupons. At some point that day, life balanced out somehow with the birth of Ethan Och (whose mom, Stephenie, became a friend) and another niece’s baby, Tori (happy 17th birthday to both!). That night was Brownies night for Katie, and I beefed up the prayers that Randy would make it back home with our Brownie before Jeffrey donned his wings. What had begun as bargaining prayers to God to keep Jeffrey here had shifted over 3-1/2 months into begging prayers to free him from the relentless and increasingly ineffective morphine/suctioning/morphine - when all of us were at home alone, please. That prayer was answered. At 10:43 that night, with Matthew and Katie conked out in odd places and Randy upstairs on the phone with his mother, whose steady prayers came from many miles away, Jeffrey took his last breath... just two breaths after I thought to tell him it was okay to go, that we would be fine. Eventually. Seventeen years. I still have ‘moments’ on occasion, but the blessings from our assignment have been plentiful and profound. I have the comfort of knowing that Jeffrey has been in the perfect place, and the thought of him with his beloved, equally-joyous Papa always brings a smile (the signs from both over the years have been quite awesome!). Our family, always pretty remarkable in my opinion, has grown and continues to impress me in myriad ways. And the unexpected bonus has been getting to meet some absolutely extraordinary folks in the SMA family. Hurled together because of a destructive disease at least 99.9% previously knew nothing about, they regroup from the diagnosis, dust off their boots, and rise to the occasion with tenacity, expertise, support, and genuine love and respect for each other. There have been far too many new SMA angels to count since we first heard ‘spinal muscular atrophy,’ but the research, including trials(!), is extremely encouraging after 17 years. No telling what ‘18’ will bring. Thinking even more about our happy little guy and so many others on this beautiful, sunny day....
Posted on: Tue, 04 Nov 2014 13:39:25 +0000
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