People say that what you don’t know won’t hurt you. I disagree. For a long time, fear of the unknown loomed over us as we struggled to define how our daughter Rachael’s learning disabilities would affect her future. At a tearful parent conference years ago, the admissions director at The Crossroads School in Paoli handed me the poem “Welcome to Holland,” written by the mother of a child with autism. As much as it speaks to parents of kids with disabilities, it’s a profound reminder that life rarely turns out exactly as we’ve imagined: We get Holland when we’re expecting Italy.
Most of us latch onto our vision of the perfect child within minutes of witnessing the transformation of that single blue line into a plus sign. The weight of that word and the possibility of anything less evades us, as does life’s recurring lesson: Expectations are unfailingly fated to twists and turns.
Our plane veered off course toward Holland just under 15 years ago, when a doctor diagnosed Rachael, our firstborn, with a language-based learning disorder at age 3. Exactly what this meant would be revealed over time, but the issue was word retrieval, a deficit that marred her ability to form complete sentences or expand her vocabulary. This would later evolve into expressive language and comprehension issues, difficulties reading and a plenitude of other cognitive impediments—all further complicated by a severe onset of scoliosis. (She now sports a titanium rod—and the best posture in town.)
Ironically, Rachael started tying her own shoes around the same time she was diagnosed with her disorder. It would be the first of many intermittent and surprising accomplishments that kept us tethered to an optimistic mindset. What other parents took for granted—memorizing colors and phone numbers, counting to 100—filled us with hope.
Parent-teacher confer-ences, however, were like negotiating a minefield. Getting comfortable in Holland wasn’t easy. Neither was navigating a child who couldn’t adequately express herself, and who had a front-row seat to all of her siblings’ achievements.
Eventually, reality coerced us into understanding our daughter’s limitations on a deeper level—without any expectation that she’d miraculously grow out of them. Seeing her as she was, rather than who we’d hoped her to be, was a freeing experience.
Having a big family proved to be a gift to everyone. We quickly gleaned the distinction between small problems and big ones—something our five kids’ teachers appreciated immensely, as we were never the ones calling to complain about the schools’ curricula. My father’s theory that some kids are meant to stay close to home also helped to change my perspective. It comforted me knowing that I might not have a completely empty nest.
I also began to relish the fact that she wasn’t doing typical teenage things (developing a penchant for fashion and slamming her bedroom door notwithstanding). Driving was one of them. When her 16th birthday came, Dad knew just what to do: He rented a bright yellow Hummer to chauffeur her around in. She acted like she’d won the keys to Abercrombie & Fitch.
It took about a week for Rachael’s emotions to swing the other way. She knew, as we did, that she might never have the freedom to drive. She’ll be reminded of this four more times as her younger siblings take their turns behind the wheel.
Just a few weeks ago, Rachael turned 18. If she was like her peers, she’d be graduating high school and we’d have spent the past six months touring college campuses, proofreading essays and stockpiling every penny for tuition. She would be facing a future filled with opportunities to be whatever, and whomever, she wants to be.
Instead of looking ahead, we’ll be looking behind at how far Rachael has come and savoring the extra time we have with her. And in doing so, we’ll also get a glimpse of what’s yet to come. Because the beauty of the unknown—once you get past the fear—is that anything can happen.
Dawn E. Warden is Main Line Today’s associate editor.