Our life is not typical, not by a long shot. We don’t always live in America. We don’t always live in Afghanistan though either. We are followers of Jesus from the west, living among devout Muslims in Central Asia. Both the Rocky Mountains and the Hindu Kush are visible from our living room windows.
We have three kids and one of them has an extra chromosome.
It can get confusing at times living in two places at once. Sometimes I rummage in my kitchen for ten minutes before I remember that I do indeed have a pastry blender, but it’s in Asia.
But some things are constant, no matter what continent we live on. In honor of World Down Syndrome Day (3/21 for the third chromosome on the 21st) here are some things we have because we have Jack Jack.
1) We have a team. Speech therapist, special ed teachers and aides, and a kindergarten teacher named Miss Bliss (could there be a more perfect name for a kindergarten teacher??) who spend their days thinking of ways to help Jack Jack learn and communicate the very best he can.
And we can take them with us! Our speech therapist has offered to do sessions over Skype, our special ed teacher posts schooling ideas to a Pinterest board and my Facebook friends lend support for potty training and the very best iPad apps for reading. Every where we go we have a team of people cheering Jack Jack on.
2) We have family. In the States we are surrounded by grandparents, aunts, uncles and cousins and a church family that will blow your socks off. They know we are weird and don’t laugh if I announce that the tap water here is safe to drink. They give Jack Jack every opportunity to be a part of their lives and to join them in what they are doing. Our friend Wayne knows that if Jack Jack is coming over, he’d better be ready to feed the horse and check the chicken house for eggs because Jack Jack comes ready to work.
In Afghanistan we have foreigner friends who become aunties and uncles to my kids. Friends who enthusiastically come for a showing of Frozen, or an Elmo themed birthday party because we if we are going to be crazy enough to live in Afghanistan, then we’d better stick together and have fun! We have Afghan friends who say “how can I help?” and old grandmothers who stuff him with sweets and tea and pinch his cheeks like every other kid on the street.
3) We have our little routines and rituals. Stuffed animals that have more miles on them then most cars, criss-cross oceans and make whatever bed we are sleeping in safe and familiar. We bake sugar cookies for Christmas in a Muslim country and have a picnic for Naw Roz (Persian New Year) in America. For Jack Jack our routines are especially important to help him understand and navigate his world. We get up and get started with our day at a certain time, home school or public, eat dinner together as a family every night and a Bible and bedtime story with Grandma on Skype or with mom on the cushions on the floor. All the kids are flexible and easy-going so we don’t have melt downs if something is skipped or out-of-order, but we can see how having a few things pinned down in the day makes it smoother for everyone.
Our lives probably look different then yours, but if you are here as a new mom with a new diagnosis, I hope you can see that it’s because choices we’ve made to live cross-culturally, and very few because of Down syndrome.
Happy World Down syndrome Day! Happy Naw Roz too. We’ve a lot to celebrate with spring equinox and a little boy and his whole tribe that we get to be a part of, thanks to that third chromosome.