Kolleen, my daughter with Down syndrome, experienced her first international travel soon after her 30th birthday when we took a family trip to Paris. She was further out of her comfort zone than ever before, yet early on, she adopted the motto, “I got this.” Those three words, repeated frequently, helped to raise her self-esteem while lowering her frustrations. With help, she wound up conquering many challenges, like climbing the many stairs in Metro stations “Oh, no, not this again,” she’d deadpan comically, discovering the vast amount of unusual sights in museums, making it to the very top of the Eiffel Tower, hearing an unfamiliar language spoken constantly, and generally speaking, experiencing the overall newness in each day.
When we returned home, she remained super proud of herself for her accomplishments, but like many people with disabilities, Kolleen’s a big fan of routine and she welcomed its reappearance. I assumed the trip to Paris would remain the pinnacle of her vacations. I assumed she’d never want to repeat an exhausting journey like that.
One day she told me she wanted to go to Italy. At first, I laughed and teased that Paris had spoiled her. Another international trip was more involved than she realized. But for two years, she persisted in her request to go to Italy, so when a deal for cheap fares to Rome came to my attention, I jumped on it impulsively and bought two tickets. We would have a great Mother-Daughter adventure, just the two of us!
Now, let’s back up to when Kolleen was born. I became a mother in 1986, long before the internet and standardized prenatal testing. I was in my early 20s and very healthy; my pregnancy hummed along as if it had read the textbook. There was no reason for testing because there was no reason to suspect my child wouldn’t be healthy and typical. While I didn’t have trouble accepting the diagnosis of Down syndrome, I was ill-prepared for the task of raising a child with disabilities, and little information was available at the local library.
I scrambled to learn what I needed to know and finally connected with the local Down syndrome support group. We attended our first group-sponsored event when Kolleen was just a few months old. The guest speaker that evening was someone I’d never heard of, a nationally-known television writer named Emily Perl Kingsley. I listened carefully as she read to us a new essay she was working on. She called it, “Welcome to Holland.” It was many years before I realized what terrific luck I had. Emily Perl Kingsley herself taught me how to approach my unexpected new life as mother to a child with Down syndrome.
It took me months to process the detailed information about my newborn’s immediate medical needs, and it took a while before I truly understood that she is perfect, exactly as she is. But I got there. I learned to let go of Italy. I learned to appreciate the tulips, windmills, and Rembrandts of Holland instead.
And now, all these years later, I had to laugh: Little Miss Holland and I were taking that trip to Italy.
I understood the success of this venture was solely my responsibility, so I began to read and plan. And plan. And plan. The language, the maps, the money, the accommodations, the transportation, the many details… In addition to her happiness, ensuring Kolleen’s safety and comfort during a week in a foreign country was paramount. So much to learn, so many decisions to make, and I had to learn and decide everything before we left.
I was soon overwhelmed. I was stressed. What had I taken on? I was way out of my comfort zone.
So this is what it may be like, I realized suddenly. This is what I imagine it is like to live in Kolleen’s world, navigating the unknown, the often unfamiliar, sensing the importance and feeling anxious about the outcome. I wondered if I was experiencing the kind of challenges she experiences daily. My fresh understanding was humbling.
The truth is, even in her 30s, Kolleen’s still teaching me life lessons. In this case, the lesson was to ask for help. I took a few deep breaths, poured a glass of red wine, looked again through the travel guide, and called Rosemary, another of my young adult daughters. Would she like to join her sister and me on this trip?
We never did make a completely solid plan. Once in Italy, the three of us adopted a Roman attitude and allowed the days to unfold at their own delightful pace. We often chose to wander serendipitously, conquering challenges, stopping for a gelato or wine or… whatever.
We got this.
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