When Eon was born, I received numerous copies of the essay, "Welcome to Holland." Although, I didn't agree with everything in it at the time, I thought it was a good enough analogy for what we were experiencing. I've since learned that some of my fellow moms in the Down syndrome community really loathe that essay and some really love it.
My friend, Patti, recently wrote a blog post about her response to it and where she is now, that made me think about it some more.
Now that I am more than two years into this journey, I feel like I lived in Holland for a little over a year. During that time, I ate, breathed, and slept Down syndrome. I read journal articles, joined support groups, blogged and read blogs, connected with other mommies, and advocated until I was blue in the face. Anything related to Down syndrome was worth my time.
If Holland is the analogy, then I learned the language, wore wooden shoes, and ate dutch food. I did feel like I was navigating the back roads of a foreign land.
Eon is now 2 years and almost 3 months-old. I feel like we emigrated back to Indiana. I enjoyed my time in Holland. I learned so much and connected with some amazing people who will always be part of our lives. I brought home useful and beautiful souvenirs. I still know the language and occasionally cook dutch food and wear my wooden shoes.
But I don't live there, anymore.
Down syndrome is a part of our lives and always will be, but it is no longer front and center. It is not the defining part of who we are.
Eon's needs fit with the needs of the other kids. He needs his juice thickened to prevent aspiration, Ellie needs to take her ADHD medication, Ben needs a schedule to plan for his day, Zak needs reminders to flush the toilet, etc. Everyone's needs are special to them and, because they're my kids, they're special to me.
Eon is a kid with Down syndrome. He is also one of the Lakes' kids. I finally see him as more of the latter, than the former.
I love Holland, but there is just no place like home!
*Back Home Again, In Indiana is our state song, most famously sung by Jim Neighbors (of Gomer Pyle fame) before each Indy 500 Race.