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.
I've never been to Holland :) So glad you came back!! LOVE YA!!
ReplyDeleteso glad you found our blog... we live in fishers now but are moving to carmel in about 2 1/2 weeks! i loved reading about your family and eon... he sounds like he is such a 2 year old right now just like whitney (she is a much "sassier" 2 year old than anne ever was!!!) glad you are feeling "back home again in indiana" now! i totally feel the same way - although there are times that i feel like i am back in holland but definitely spending most of my time in indiana (which, by the way, WHY do we live in indiana???!!! if we could cut 6 weeks of winter off i would like it a lot better, how about you???!!!) :)
ReplyDeleteI wish I could get there Tara. We lost so much when we got the diagnosis. The poem still resonates with me, because I never ever thought I'd be kicking around in America and here we are, almost three years now. I also lived and breathed Down syndrome and that is definitely less, definitely more kid then kid with Ds, but every day I wake up here is a reminder that we aren't in Central Asia, aren't doing what if felt like we were made to do...
ReplyDeleteHowever, if you want to move again, come to CO. I sure could use a kindred spirit. :) Love you.
Oh Tara, this is quite possibly the most beautiful post I have ever read. THIS described what I am feeling right now...I still feel like I am in Holland...But one day, when I am ready I want to go home. Thank you so much for posting this :)
ReplyDeleteBeautifully said :) Sophia has always had a lot of other "stuff" going on that honestly I never really felt like Down syndrome took a front seat in our lives and I'm kind of glad about that, but also feel like there is so much more I need to know. Overall, I just see Sophia as my little girl and everything about her, even her "special needs", are just so normal to me that I forget not all kids have feeding tubes or therapies or a cardiologist :)
ReplyDeleteI love this post! I never really identified with going to Holland. There have been days I'm there, but they have always been few and far between. Ds is always a part of things for us, but it's never THE thing.
ReplyDeleteI LOVE your take on Holland, Tara- it's beautifully put. Oh! And somehow I missed that you're expecting again- Congratulations!!! :)
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