Shortly before Christmas, nine years ago this December, our four-month-old baby, Schuyler, was diagnosed with transverse myelitis. The sights, sounds, the confusion, chaos, questions and fear, the images of my once healthy, bouncy, baby boy lying motionless, supported by a ventilator are forever burned into my memory and etched on my heart.
My story is like so many others in that an unheard of diagnosis strikes out of nowhere, flipping a family’s world upside down, leaving them overwhelmed and afraid. And, if I’m honest, repeatedly placing us into a tailspin, months, even years after diagnosis after seemingly being on the right path. This is Myelife. My Hope.