From time to time, you guys inquire after how Grace is doing with our constant, far-flung travels. Although we like to spend as much time in each country as we can, in less than two years we’ve been to 19 countries. So how has Grace done?
We started our travels with a Grace that was overweight and struggling with dementia and Alzheimer’s. At one point, she went completely catatonic: she would lie and defecate in bed all day and we had to force feed her. It was a scary time. We are thankful for the wonderful people who helped her (and us) through the years: top-notch medical doctors and specialists, school teachers, Special Olympics friends and leaders, social workers, and Community Workforce staff. But in her condition, we were told that a nursing home was the only option left.
That, ultimately, necessitated our decision to pack up and get her moving. As you can read in this post, our main goals for Grace while traveling were to simply get her out walking everyday, have her brain stimulated by new sights, smells, and noises, and to have her interacting with other travelers and locals.
Traveling has accomplished all these things. Grace has lost around 40 pounds just from carrying her own backpack and, without a car, from having to walk everywhere. She has also probably hiked more than most Down syndrome people!
She has made friends and met Down syndrome people of various nationalities: Spanish, Taiwanese, and Indian Malaysian. While in Turkey, locals treated Grace like a queen by helping her on and off buses, cleaning her mouth or shirt when she was eating, giving her free meals, or a kiss on the cheek.
Thalia from Singapore gave Grace a coloring book for Christmas, RV from the Philippines/Canada got a playlist together of Christian music for Grace to listen to, Keith colored, gave flowers to, and talked with Grace every morning at the Jerusalem Hostel, a Bedouin Jordanian gave Grace a free meal, the guys working at our guesthouse in the Maldives gave Grace colored pencils. Our three Spanish friends, Elena, Virginia, and Maria, kept her pace while traveling with us for a month.
Countless people have shown Grace kindness and love, the two things she responds to most. Between all the stimulation she has received from new environments and care from those she meets, Grace has improved greatly. She has done amazingly with figuring new places out, with getting on and off shaky boats, with eating all kinds of food (even ones she never used to eat at home!), and is, very importantly, sometimes talking more!
Her brain goes through some kind of cycle, so at times she does better than others. I had a nightmare week with Grace in Bangkok, Thailand where she became very obstinate. For example, when it was time for us to get off the BTS (like a skytrain/metro), Grace didn’t want to get up and threw a fit, yelling and throwing herself across the seats. We missed our stop, but I was able to get Grace through the BTS doors just before they closed on the next stop. The next day, after doing some grocery shopping, we had to go up a flight of stairs from the store to the sidewalk. Grace didn’t want to go up them. A Thai police officer had to take one arm, and I the other, to carry her up.
One time in the south of Spain, we had to catch an early bus to start our journey to Morocco. We were walking from our hostel to the bus station at around 5 in the morning. Grace decided she didn’t want to carry her backpack anymore, so she threw herself down on the street and yelled! Another time, Grace got sick on an Airasia flight. She threw up all over the place several times and again in the airport. And sometimes she doesn’t tell us she needs to go to the bathroom and just goes in her pants.
It still takes incredible effort to care for a person who can’t shower or take care of themselves in any way. (That’s why my mom and I work together.) But we would be caring for her in the US anyway, so why not do it in environments where she’s getting a better life?
We are very grateful God lead us to this out-of-the-box solution for Grace. It’s not all easy or perfect, but we’ve been absolutely amazed to see how God has worked it out for good. 🙂
Thank you all for asking about Grace and staying in touch!