What does it take to graduate with a Ph.D in How to Find the Silver Lining? Being able to “see the positive” in a life just charging at you like Mongol hordes is not enough to result in a diploma. But how I, and parents like me, who have a child with disabilities, have been able to muster enough wherewithal to manage those hordes of confusion and challenge, and come out somewhat whole, might be enough to earn that diploma.
Giving birth to a child with a disability, it was as if I jumped out of life’s hot air balloon into open space with no net. And so I fought, clawed and wove my own net of support for my daughter, with years of special schools, tutors, hobbies, outings, guidance. So much care. My daughter, Sophie, born with Down Syndrome, was flourishing. Her speech was clear, she could read, write, sing, run, tell bad jokes. In short, she was perfect. The silver lining was blinding.
But recently Sophie has become lost in a haze of her own confusion and disconnection. Forgetting where she was, talking to herself, withdrawn. And not snapping out of it, no matter what. Sophie has been diagnosed with early onset dementia. So how could I possibly find anything positive against this backdrop of loss?
The silver lining is my daughter’s 24/7 caregivers; Kat, Annie, Jessica, Sami and Christina. They bring her lessons, music and conversation. They cook and shop for her, they dance with her, give her sponge baths and hugs, they comb her hair, help her dress. They take delight in Sophie’s successes, they make sure she is warm and safe and engaged. And they set me free to be Sophie’s mom and not her nurse.
To earn the Ph.D in How to Find the Silver Lining, you have to be capable, intrepid, your upper lip stiff, your chin forward, your heart able to heal magically. The degree is offered at the University of What the Hell is Next.
And it has become my most valuable possession.
With a Perspective, I’m Jolie Kanat.
Jolie Kanat is executive director of a supported living services agency in Marin. She’s the mother of three, including her daughter Sophie, now 32.