About seven hours after our son David was born, we learned that he has Down syndrome. We received a packet of information for parents in our situation, including the famous essay by Emily Perl Kingsley, “Welcome to Holland.”
The gist of her composition is that entering the world of special-needs parenting can feel like landing in Holland when you were headed for Italy. It’s slower and not as glamorous, but it has a beauty all its own.
Her essay has been a good metaphor for me as I continue to learn about “Holland.” I’d extend the metaphor to suggest that a trip to Italy (i.e. parenting a typically-developing child) includes a guide book made up of “ages and stages,” growth charts, and plentiful advice from experienced parents. Parenting in Holland, however, is like traveling without the guide book, partly because every child with special needs is special in his or her own particular way, and partly because these parents and their children are fewer and farther between. This is not to say that resources don’t exist; but honestly, they haven’t been a great help as we try to learn what David’s strengths and challenges are and how to address them.
So—what’s a day like with David?
It’s trying to be patient with an almost-ten-year-old who isn’t yet potty-trained. It’s trying to understand what he is saying (his speech is intelligible about 50% of the time). It’s being awakened in the middle of the night to change his diaper.
It’s being elated when, at the age of 8 ½ , he receives his first invitation to a birthday party. It’s trips to occupational and speech therapy, filling out paperwork for special services, getting his orthotics resized, listening to him sing his favorite VBS songs over and over (and over!), wrangling with him to floss and brush his teeth, hearing the soundtrack to “Toy Story” as he watches it for the thousandth time, watching him play with our little dog, wondering where he hid the phone (and hoping he didn’t dial 911 again!), and cleaning up after him.
But it is ever so much more.
It is marveling at his teachers, therapists, and care-givers, who personify all of what’s right about the human race. It is melting as he hugs a complete stranger and seeing the joy that spreads over the unsuspecting person’s face. It is hearing him pray in the middle of the living room and joining in when he asks me. It is wondering what goes on in his mind when he is daydreaming or sleeping or staring out the car window. It is finding Barney in the clothes hamper. It is finding the phone right next to Barney.
It is meditating on his name—David, which means “beloved,” and realizing that we gave him exactly the right name. It is growing in the conviction that God’s ways are not our ways, and that David was created exactly as God desired him to be. It is longing for heaven when we will know as we are known, and when we will know David as God knows him.
P.S. If you have another minute, read Maureen’s post: “How to be a good friend to so a family with a Special Needs Child” –it’s full of great ideas & encouragement!