When my husband and I began talking about having children two decades ago, like other young couples, we had an idea of what our kids would be like. Most likely they would have brown or black hair, brown or hazel eyes, amazing musical abilities, and might even be athletic. This was how we imagined them. And this entire time never once did we envision them as having disabilities. Instead, our children were beautiful, healthy and, well, normal.
Then reality hit. After a rough pregnancy we were faced with a “new normal”. Our first-born, the one we had been dreaming about, hoping and planning for, was not, in all honesty, what we’d expected. She had ten fingers and ten toes. She had two arms and two legs. She was absolutely beautiful. But, she couldn’t function like other children her age. She couldn’t roll over. She couldn’t sit up or stand. She couldn’t walk, run or jump. She couldn’t even talk, at first. She depended on us for her every need.
I wouldn’t say the roof caved in, or that the floor dropped. But it was a shock to learn that she had disabilities. As we listened to our friends with children share about first steps, learning how to ride a bike, brushing their own teeth for the first time, we realized just how new and different this normal was going to be for us. Our one saving grace was that she was our first-born, so we didn’t have much to compare this “new normal” to outside of what we’d seen with our nieces and nephews and heard from our friends. But I struggled with the guilt of feeling let down and, honestly, a bit envious.
A few years later, as my husband and I continued adjusting to our new normal, I was introduced to an amazing analogy on being the parent of a child with disabilities- A Trip to Holland. Written by Emily Perl Kingsley, the story compares this new normal to trip to Italy that you’d been planning for a long time. However, when the plane lands you find out your are in Holland. (http://www.our-kids.org/Archives/Holland.html)
For the first time I felt like someone knew what we were going through in our attempts to adjust to Dorothie’s challenges. It wasn’t horrible. It wasn’t disgusting. It was just not what we’d planned. We found new benchmarks to be proud of, such as using her pincer grasp, sitting straighter in her wheelchair, or forming words we could understand. These became our bragging rights. And brag we did! I thought I would melt the first time she said “I yah you” at age 4. It was a defining moment for her and us as it was her first sentence. We were so proud.
I love our family. I love our life together. It may not be easy. It may not even be the ideal. But it is who we are, and that is just perfect. Sure, we will need to endure hours and hours of Barney the Dinosaur, The Wiggles and The Fresh Beat Band well into our 70’s. And we will need to cut up her food, change her diapers, open doors, turn on electronics, brush her teeth, comb her hair. For us, it is normal. And it is a part of who we are as a family.
Looking back, we are nothing like we’d thought we’d be. But in retrospect, we are what we were meant to be. As wonderful as Italy would have been, Holland is a great place, and perfect for us. In fact, we didn’t lose paradise. We redefined it.