Where are the tulips and windmills?

The first story we heard about raising a child with special needs starts like this:

"When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your plans. The coliseum. The Michelangelo David. The gondolas in Venice. You learn some handy Italian phrases. It's all very exciting.

Sleeping sisters

After months of eager anticipation, the day arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland."

"Holland?!?" you say, "What do you mean "Holland"??? I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. (To read more: http://www.ndsccenter.org/resources/package1.php)"


Lizzie's 1st smile (12-19-2011)



We heard this story from the hospital nurses, psychiatrists, friends and family. They all mean well but - come on - Holland? That's a bit of a stretch. We didn't land in the country of tulips and windmills. But we are traveling to an unexpected place, and I was relieved this weekend when I met other Down Syndrome parents who felt just like me.



Our family (all four of us) attended our first Down Syndrome Network of Oregon (DSNO) event on Sunday night. It was a holiday party at the home of the Network founder. As we turned down the driveway, we wondered - "should we do this?? Are we ready? Is Maddi ready?" Then came the strength part - that deep sense of faith that will carry us through these coming years.

As the wide oak doors swung open, we saw couples and kids grinning ear-to-ear - partying just like anyone else. Yet at that moment, everyone stopped to welcome us as if we were celebrities. We were the new kids, the ones with the new Down Syndrome baby. We got hugs and kisses, Elizabeth was swept away by the DSNO founder (who has a severe case of baby-snuggles), and immediately we were embraced by empathetic parents.

We love our children; we are enthusiastic about this journey; and we are terrified about the challenges ahead.



Lizzie's first therapy teaching me 
to hold her to build neck strength



We spent several hours meeting parents of DS kids ranging in age from 5 months to 12 years old. We asked about their development, about their siblings (who were all there), and talked about the moment doctors told us our newborns had DS. To be honest, I'm a little freaked out. Most of the kiddos wear glasses and have severe speech difficulties. I'd be lying if I didn't share this - I never had those struggles and I'm going to need to learn how to support Elizabeth when she has those struggles. And isn't it always true that it is harder to see your kids struggle than struggle yourself. My goodness - that is a tall order!

I'm not in Italy and it's not Holland either. But the truth in this tale is that I need new guidebooks. I need to learn how to address Elizabeth's sleepiness - she is so sleepy that she doesn't even tell us when she is hungry.


Lizzie practicing tummy time -
the most valuable way to strengthen
her muscles at this stage


Her muscles have "low tone," which means we have to work extra hard on tummy time. Fortunately, she is much more complicit than big sis Maddi.

At only a month old, we don't where Elizabeth is on the spectrum but we know she has Downs. We don't know a lot else right now, except that there's a supportive community and our newest daughter is helping us learn in ways only your own kids can.