Thirty years ago this week, I became the mother of a special needs child when our daughter Elizabeth was born. She came to this earth with a variety of disabilities that added up to “severe.” That had not been in my plan for the neat little life I wanted to live and it rocked me to the core.
In an attempt to be helpful and comforting, people shared with me the “Welcome to Holland” story by Emily Perl Kingsley. In it, Kingsley likens becoming a mom to a child with special needs to planning a trip to Italy and winding up in Holland. Instead of the Coliseum and gondolas, you get tulips and Rembrandts.
Or, they shared the Erma Bombeck essay on how God chooses mothers of special children, singling out women who laugh, who do not have too much patience so they don’t “drown in a sea of self-pity and despair” and who have just the right amount of selfishness. Ouch. And when they said things like “God must think you are special parents to give you a special child,” all I could think was that I did not want to be special. I wanted to be normal! (Clearly, I gave up on that fantasy a long time ago.)
The truth is that over time, those types of stories lost their sting and became sweet as our family adjusted to a new reality (hello, Holland). Elizabeth and her labels inspired us to adopt children with their own labels. At one point, our kids collectively had more labels than letters in the alphabet — and yet they were (and are) all kids who need love.
The problem with the “Welcome to Holland” story is that it leaves out big chunks of reality. Holland isn’t just tulips and windmills and Rembrandts. (And Italy isn’t just the Coliseum and gondolas, for that matter.) Sometimes you get lost and stuck in a seedy part of town, or the weather is crappy, or people can shun and mock you or your child. You discover some things, like pickled herring, are just gross and that even when you do find the beauty, it doesn’t negate the hard things. You just get used to living with hard things.
As parents of children with special needs know, you adapt to your new reality and it becomes normal to you. So normal that you sometimes forget that dealing with feeding tubes and wheelchairs and endless doctor visits and surgeries and teenagers in diapers and IEP meetings (Individualized Education Plans) by the score isn’t commonplace.
Every once in a while, though, the darker side of Holland smacks you upside the head. You can’t find babysitters so you can go Christmas shopping because G-tubes are scary. Social isolation sets in and often gets worse as your child gets older. You can’t get respite from the Division of Services for People with Disabilities because your family is holding it together a little too well. (Elizabeth died on the DSPD waiting list, after being on it for years but at least we weren’t told, like a friend of mine, that if my husband and I were getting divorced, or on the verge of losing our home, we’d be more likely to qualify.)
Politicians speak of cutting services that keep your child alive and advocates for smaller government tell you to turn to your community for support — as if your neighborhood or church group will be able to hold enough bake sales to cover costs for your ventilator-dependent child. Neighbors suggest that your child with significant mental illness but who looks “normal” would be fine if you just prayed harder and had more faith. You live in constant fear that the latest illness/surgery/set of seizures will be the one your child won’t pull through — and one day, you’ll be right.
And you’re tired. So, so tired.
This Christmas season, might I suggest that we find ways to reach out to parents of children with extra challenges? Parents of special needs children need neither pity nor a pedestal. Go for practical. Can you babysit so they can Christmas shop by themselves? Or go to dinner on your dime — what a novel concept! Or maybe you can wrap presents with them or bring dinner one night. Ask questions about how to best engage with their child and then do it. Bring a care basket for Mom — chocolate, a Hallmark Christmas movie and warm socks or bath bombs, candles and a fluffy towel, then hold down the fort while she takes a break. Do something with the siblings.
Or maybe just sit and talk and find out more about them and their child(ren). A nifty conversation starter might just be to ask them what they think about Kingsley’s “Welcome to Holland” piece. I’m sure they’ve heard it.
Holly Richardson, a regular contributor to The Salt Lake Tribune, has been to Italy and Holland and finds them both to be lovely places, both literally and figuratively.