spinal muscular atrophy writer

Liz B.

Mom

A beacon of light

I can still see his cerulean eyes sparkling with excitement, “Tur-tal! A-gan Mama! A-gan!” beseeching me for the hundredth time that hour to press the button on his singing toe-tapping turtle. I was unaware that the turtle’s words, “Crazy ‘bout you baby,” foreshadowed the days ahead.

05/2018

Our life was on track to happily ever after until a trip to the neurologist with our 9-month-old, Skylar, blew our predictable world to bits, the trajectory sending explosive waves rippling through our entire family.

Skylar was an amazing baby. He had an infectious smile and astonishing verbal skills that attracted attention. What he didn't have was the ability to sit up on his own.

After 5 minutes with the neurologist and a simple blood test, our beautiful baby boy was now a textbook case of spinal muscular atrophy (SMA). My husband and I, both recessive carriers of the genes, were absolutely blindsided. Not only were we facing a disease with no known cure, but even if Skylar survived he would be severely disabled, requiring an endless sea of mobility and respiratory devices.

By Skylar’s first birthday, our house was a menagerie of mobility equipment, from floor sitters and play tables to wheelchairs and standers. By age 2, Skylar was saying words like, “pulse oximeter” and “cough-a-lator.”

Around age 3, Skylar had racked up frequent hospital stays with life-threatening pneumonia. But he was not held back by a slow recovery. Skylar came home in his first motorized wheelchair, smashing into walls and having the time of his life as any 3-year-old with a driver’s license would do.

Skylar took life in stride. As his support team grew, his spirit never diminished. He spent 3 hours a day receiving respiratory therapy, 2 hours getting nutrition through his feeding tube, and another hour consuming enough prescriptions to keep any drugstore in business. Skylar’s days were filled to the max, as were mine trying to stay on top of his care while balancing a sense of normalcy in our family.

His positive attitude was an inspiration to those around him. He attended private school with his older brother and was quick to make friends. He excelled in language arts and math and was always included in whatever sports his peers were playing.

With bravery and persistence, we had pieced together a new happily ever after. Until it suddenly fell apart. Without warning, Skylar became an angel. He was only 7 years old.

That was almost 7 years ago and my grief is still alive. The complexity of my emotions makes it difficult to find the right place to hold it. Children with SMA are smart and vibrant with huge personalities stuck in weak bodies.

When I look back, I can still see Skylar’s brave smile radiating like a beacon for my aching soul. The memory of his smile is the light I follow. It fills me with hope. Skylar experienced more love and deep friendship in his 7 years than most do in a lifetime. I will forever treasure my blue-eyed angel who was crazy about life and changed mine forever.

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