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.
It isn’t one that has felt the physical pain often associated with a TM diagnosis but one of a broken heart as the mom of a precious baby – a living, breathing part of my being. Life after Schuyler’s diagnosis has been a daunting roller coaster and 2016 in particular, seemed to have far more dips in the ride than before. 2016 has been marked with time away from school and family for a myriad of appointments and pain that no child should ever have to endure. It seems once we are on top of an issue resulting from the spinal cord injury, the TM left him with, another rears up with no down time in between, or we have to choose which issue will take precedence. Thoughtfully and carefully considered options for care haven’t gone quite as planned, resulting in disappointment, frazzled nerves, and feeling like we’re waiting for the next shoe to drop.
Despite the challenging year, we cling to hope. I vividly recall telling a physician as our inpatient rehabilitation stay was coming to an end, with my baby boy in my arms, unable to bounce and move as he did just several weeks before, now swollen and irritable from the steroids, that he couldn’t take away my hope. If he took away my hope, what would we have left? Hope was everything to me.
I still hold tightly on to hope and want my son to know and realize it, too. I find hope in my faith, even if it’s a fractured faith. I believe there is a greater force at work in Schuyler’s life, holding him and shaping him. I have hope in a young labrador retriever, being trained to support my son emotionally and physically. My hope is in the people and the community that are SRNA; the support groups of individuals, family members, and friends diagnosed with TM, the physicians willing and ready to learn from their peers and patients alike to help support this rare community. I have hope in new generations of physicians specifically training them to properly diagnose and care for those we love with TM. I have hope in their research and pursuit of answers. I believe in the programs dedicated to providing knowledge, resources, and support to newly diagnosed individuals and updating those living with the effects of these disorders for many years with the latest developments and what we’ve learned. Hope is found in the unique experience of camp, bringing children and families together, reassuring them they are not alone.
Hope remains regardless of where we are in the cycle of grief or life after the diagnosis. Hope will persist and help see this family through.
Rebecca Whitney
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