Why I’m dedicated to providing support to others in the SMA community
It’s been almost four months since my husband, Randy, and I made a hasty run to Charleston, South Carolina. Our mission was to adopt a dog our daughter, Katie, had found at a nearby rescue. This frequent mama dog named Ellie piqued the spark missing since the loss of our last two dogs.
Ellie’s story seemed simple enough. She arrived at the rescue with puppies. When her puppies were adopted, she seemed resigned to help foster the next incoming litter.
With puppies in perpetual motion all over her, Ellie didn’t acknowledge our presence in any way. She showed no interest in the sweet talk, gentle rubs, and promises of a wonderful life. The foster mom said Ellie didn’t walk on a leash, so she’d have to be carried to the car for the ride home … or anywhere. She carried Ellie to the car, placed her in a crate, and wished us well.
Ellie didn’t make a peep on the long ride home. I may have seen a tiny glimmer of hope in her eyes that she knew she was going to a good place. Or maybe I just wanted to think she knew.
In essence, Ellie was almost totally shut down. Alas, on the 10th day, she rose on her own from the safety of her cozy bed to go outside on the leash willingly. It was a gigantic accomplishment!
Enter Poppy, a dog we adopted from the same rescue on May 1. We had high hopes for her being a substantial positive influence on Ellie. This perky new sister hasn’t disappointed.
Three days after her arrival, Poppy had worked herself up to snuggling right next to Ellie. She has since unwittingly inspired Ellie to turn so many corners that I’m dizzy. Ellie hops into the car for rides without prompting and walks happily with Poppy and me on our property. She now sprints with Poppy toward Randy, who waits at the house, when we reach the last, longest stretch of our walks. Ellie has waited until Poppy is also unleashed so they can run together, as if showing appreciation for the support Poppy effortlessly provides.
Almost 29 years ago, I learned to appreciate support myself.
An indescribable diagnosis
On July 14, 1997, Randy and I consulted a pediatric neurologist. Our 8-week-old baby, Jeffrey, had demonstrated some alarming signs, including persistent abdominal breathing, a dull-sounding lung, and no reflexes. We were anxious to find out what was going on and how to fix it.
The neurologist revealed the likely culprit: a severe case of the deadliest form of spinal muscular atrophy (SMA), a genetic, progressive, neuromuscular disease. The muscles for movement, swallowing, sucking, and breathing would eventually stop functioning. There was no fix-it plan.
According to statistics at the time, we didn’t have much time to find a way to outwit SMA. Consequently, our first order of business was to get hooked up to the internet.
A message board run by what was then called Families of SMA (now Cure SMA) changed everything. Once I started reading, the oppressive hopelessness of our SMA assignment eased a little. Families who had already lost children and those currently in battle contributed to the board. They posted with clarity and unconditional support for fellow warriors, especially those who were new to SMA. I introduced myself and was in awe at the prompt responses exuding encouragement, understanding, and compassion.
What I gleaned from the plethora of messages was hope, something generally held captive by the medical field in 1997 with respect to SMA. I could hope that maybe Jeffrey would defy the odds and see more birthdays than expected. Or even if he didn’t make it to two years as projected, I had hope — assurance, even — that the rest of us would not only remain upright, but continue providing the same support that was boosting me.
My desire to provide support
From left, Ellie and Poppy, our newly adopted dogs, sprint side by side in utter joy. (Photo by Helen Baldwin)
Jeffrey’s earthly stint lasted just under six months. The grief that we didn’t beat SMA was trumped by relief that SMA could no longer wreak its insidious destruction on our sweet baby. We’re confident he’s in the perfect place.
For years after our SMA assignment ended, I provided as much support as possible for families newly diagnosed with type 1. With the current mind-boggling treatment options for SMA, however, I’m at a loss when it comes to offering support for new inductees to the SMA family. A reliable source told me years ago that new SMA families privy to miraculous treatment don’t really want to hear from the old families who had no hope, much less treatment options. Back then, crises and deaths were a constant, especially for children with type 1.
At the risk of sounding a bit morbid, I thrive on providing support in situations involving serious issues, such as the death of a child, as well as those with incredible signs of hope. Thanks to this column, I’ve been able to do just that on several occasions.
Thankfully, no one has asked me to sprint.
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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