Giving Thanks Beyond the (Frozen) Turkey: Friends Through SMA
Finding art and bonding through our rare disease community
Last year, my brother and I plotted to round up our respective families for Thanksgiving. It was a daunting effort. Our family branches are scattered over three states, and, as usual, work schedules conflicted.
Alas, thanks to some angel intervention and alignment of enough stars, we managed to come together. In the comfort of her own apartment down the road from us, “Nana” (aka Mom) met the youngest additions to the family and enjoyed seeing — as much as her failing vision allowed, anyway — how the others had grown.
It would be the last such gathering; Mom’s death came three months later. I was even more thankful this year for that thrown-together get-together.
This Thanksgiving, the downsized crowd consisted of Randy (my husband), our two adult children, our two grandchildren, and a granddog. Despite our missing Mom’s wit and presence, there was an abundance of hearty laughter and so much food that my stretch pants begged for mercy.
Besides the rare treat of having our family together, I was thankful no one cared that the $6 sale turkey was still frozen Thanksgiving morning, forcing Randy into Plan “Eye of Round Roast.” We’re an easy group.
There’s something good about SMA? You bet.
Life was going well in 1997 when our third baby, Jeffrey, was diagnosed with SMA. Our active assignment, brief but intense, ended before our sweet surprise baby turned 6 months old.
Thanksgiving came 23 days later. If it’d been left up to me, it could have slipped right on past without a speck of fanfare, but after the day ended, I was thankful it hadn’t. There was a palpable sense of loss then, too, but it’s hard to stay down with an incredible family. And we reminded ourselves that Jeffrey was in the perfect place, healthy.
In pondering the purpose of such a devastating life chapter, we appreciated watching prayer and faith at work. My optimistic self, however, insisted that something else good must be part of it.
My optimistic self was right.
It was the people I met.
A reconnection, courtesy of a paintbrush
“The Jeffrey Journey,” my book about our SMA assignment, includes a special dedication for those living with SMA and those who have passed on. Over the years, I’ve kept in touch with some of the families and remained close to a few, but I’ve lost contact with most.
In early September, I was drawn to a Facebook post from Art by SheilaE showcasing a painted sea turtle. I knew right off that it was Sheila Eichele. Sheila’s son Skylar has SMA. I knew his name from the book’s dedication, but had lost touch with Sheila. I was stunned by her gorgeous work and vowed to contact her.
When I learned Sheila did custom work, I sent her a few family photos, including this one.
In a few days, Sheila shared the finished product.
Thrilled with the remarkable likeness, prompt work, and reasonable fees, I wanted to learn more about the story of Sheila’s art.
Sheila started painting when she was 4. With the exception of a couple of beloved art teachers, she had no formal training in any medium. (She said she’s done just about everything but blow glass.)
Some rough life patches compelled Sheila to put painting on hold at one point. When she resumed 21 years later, she didn’t skip a beat.
Skylar, almost 18, enjoys art himself. Despite his vast limitations from SMA, Sheila said that if you pay close enough attention, you can feel the gesture in Sky’s hand suggesting the way he wants to go with the painting, and she helps him get there.
There are no nurses assisting Sheila, who is Sky’s full-time caregiver. “So I get pretty busy.” That’s a bit of an understatement. And still she paints.
Sheila particularly loves painting in black and white. Sometimes she works from photos, sometimes “right out of my head.” Atop her list of favorite subjects are elephants, but judging by her work, you’d think all her subjects ranked at the top.
It’s obvious that Sheila loves and appreciates both her knack for creating and recreating and her ability to share that with Skylar and others.
She wrote, “… anything god [sic] has created I want to capture. So I’ve got a lot left to paint.”
Thank goodness for that. Sheila’s painted land life, sea life, big critters, tiny critters, flying critters, and so much more. Every piece I’ve seen has been stunning, but besides the paintings of my family, my favorite may be the octopus.
SMA may not be responsible for Sheila’s God-given gift, but the daunting assignment obviously hasn’t squelched it, either. If our own family hadn’t been hurled into the world of SMA, I would’ve missed out on this artist’s extraordinary talent and friendship.
And that’s one glimmer of good from SMA.
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.