Birthdays & Beginnings
The uncertainty of the future requires trust in God's plans.
Observing the slow shift from winter into spring is therapeutic. I enjoyed time outside recently with my mother–in-law. We made a point to just sit in the sun for a while. With delight, she pointed to the crocuses popping their heads out of the soil in the gardens around her long-term care home.
May marks another birthday in our home, this time for Rachel. Turning 17 looks much different for Rachel than for our older children. Instead of preparing for a final year of high school in anticipation of future study, travel or work, Rachel is hoping to remain in high school until she turns 21. Beyond that, we don’t have a solid plan.
Mixed feelings
Birthdays for Rachel and Janneke invoke conflicted emotions for me as their mom. I’m happy to celebrate, but I’m also increasingly anxious about supporting the girls into the future. I am also reminded of the trauma we experienced in the birthing room with both Rachel and Janneke’s arrivals. Though we knew there were some concerns with Rachel before she was born, we held firmly to a few threads of optimism. When she baffled the medical teams with her anomalies, we harnessed adrenaline we didn’t know we had and determined to figure out a new way forward.
In the years that have passed, there have been several scary moments when we wondered if we were saying goodbye. Yet Rachel seemed to rally each time, bringing us along for the roller coaster ride of everything-is-ok to everything-is-not-ok to everything-is-ok. Her smile is magnetic and her furrowed brow promotes such character!
Her 17th birthday comes with even more mixed feelings, as it marks the last year of receiving paediatric services. When Rachel turns 18, she will transition from the paediatric service world to whatever services may be available for adults with developmental disabilities. Funding we’ve relied on all of her life for respite support will halt on her 18th birthday, and we will have to apply (and sit on a waitlist) for funding for adults. Changes and losses will be felt, specific to other services we’ve accessed.
“Change never happens at the pace we think it should. It happens over years of people joining together, strategizing, sharing, and pulling all the levers they possibly can. Gradually, excruciatingly slowly, things start to happen, and then suddenly, seemingly out of the blue, something will tip.”
― Judith Heumann
Fierce trust
I’m grateful for the collaborative work of family partners with researchers and service providers to provide some direction with this impending change. Yet there remains a deficit in our province of resources and information for parents, caregivers and young adults when it comes to transitioning with a developmental disability from childhood into adulthood. There is no smooth transition. We will celebrate Rachel’s birthday and hold that tension of our apprehension and fear with our persistent hope. We will likely spend it outside in the garden, watching it grow and green up.
