If I had been handed a crystal ball nineteen years ago when our daughter was born, I would have expected to see her heading to college in the Fall of 2020 – gearing up for a sports season, excited to get back to friends and classes, parties – maybe a love interest.
These many Octobers later, life is different than I would have imagined. I know I’m not the only parent wrestling with altered expectations this month – but I’ve had a head start in the I wasn’t prepared for this department.
Our daughter has a condition that impacts her cognitive and motor development
Two years after her birth, our daughter was diagnosed with a rare genetic condition which impacts cognitive and motor development. At the time, my father, trying to wrap his head around the scale of the situation, wondered if she’d ever be able to walk down to the corner by herself and buy a cup of coffee. I had no idea. It sounded basic enough a task. I hoped she would.
Back then I would have been crushed by the answer I know today. But at the time the not knowing enabled me to hope, got me from one stepping stone to the next and allowed me to appreciate a life I never envisioned. Today, the answer, while no less disappointing, is just the way it is. It’s just the way Erin is.
One of the anthems of the special needs community is an essay by Emily Perl Kingsley called Welcome to Holland, in which a mother compares raising a child with a disability to a traveller who has long planned a trip to Italy only to discover there’s been a change in flight plan and she has arrived in Holland.
It’s nothing what she expected – ‘no Coliseum, no Michelangelo, no Tuscany’ – but gradually the traveler sees that Holland has its own attractions and rewards: tulips, Rembrandts, windmills.
I’ve found grace in unexpected places
While I haven’t always bought into or identified with the rosy spin of that parable, my life with Erin has allowed me to find moments of grace and gratitude in the most unexpected of places.
Though she can not venture to the corner or anywhere alone, Erin loves walking with me, her dad, her care-givers – and her service dog, Pablo. She loves learning about the world and marvels at the mundane. “Look at the trees,” she implores from the back seat every day. Unlike the rest of us she is rarely in a hurry and always takes time to engage. “What’s your name? I like your red shirt,” she said to an older gentleman, refilling a shelf in Stop ‘N Shop the other day.
Our daughter’s quality of life is not defined by her ability or lack thereof to get a cup of coffee on her own. While, sure, it would be great if she could, this is not an activity from which Erin would derive joy. And joy is an intrinsic part of Erin’s life and our life with Erin.
Maybe something good will come of all this
Remote and hybrid learning, cancelled sports seasons and mandatory mask wearing has caused a lot of parents (myself included) to lament this year’s unexpected trip to Holland and to believe that life is forever altered for our children. There is no denying that. But maybe we are denying our kids and ourselves something with all our hand wringing at the unplanned and uncharted. Maybe it won’t be all bad. Let’s not push hope and a rosy spin or two entirely out of the picture.
Erin has three younger brothers who started school this week – backpacks, water bottles, masks and commentary at the ready: “It’s not going to be the same. It’s going to be so different. It’s not the way school is supposed to be.”
I can’t argue. It’s unusual. It’s uncomfortable. It’s not the way school – or life – is supposed to be. Refraining from the annoying mom reminders that there are no guarantees, I can only hope that maybe they and we will discover some unexpected joy in a time and place we were not supposed to be.
