Unexpected Blessings: May 2011

Thursday, May 19, 2011

Augusta is my Holland

There is a story I have to share. Since Augusta’s birth, a lot of people have asked me what it’s like to have a child with Down syndrome. And honestly, I don’t even know where to begin. Sometimes I talk about the medical issues. Other times I mention her therapy sessions. But the truth is, what I’ve learned about my daughter can’t be found on WebMD or in a pamphlet about Down syndrome. That’s when I came across this story. In the world of special needs, it’s a story that parents have read dozens of times. And if they’re like me, it’s a story that is especially touching. So here’s what it’s like to walk in my shoes.

“Welcome to Holland” by Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's 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 wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally 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 signed up for Italy! 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 out 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.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Having a child with special needs may not be what I planned, but I honestly believe sometimes God has a bigger plan for you. She is special in a way that can only be described as a miracle. The beauty of Holland – the windmills, the tulips, the Rembrandts – that’s our little Augusta. If anyone were to ask me why I fundraise, advocate, or rally for her, it’s because I want others to see the beauty I see...not just the Down syndrome.

Yes, our family life is different now. We have frequent doctor’s visits. We often travel 2-3 hours away to see doctors who specialize in Down syndrome. Therapists are in our home on a weekly basis. When we feed her, change her, or hold her, we are constantly aware of exercises we can do with her or special positions to put her in. We are starting to speak to her in sign language. We hold our breath waiting for blood results to come back that test for leukemia, celiac disease, and thyroid problems. Her future – where she will go to school, how kids will treat her, whether she’ll fall in love and get married – is never far from our mind. Those aren’t things we have to worry about with our son. The truth is, having a child with Down syndrome is different, but it’s certainly not the end of the world.

If anything, it’s just the beginning. Augusta has opened my eyes to so much. When I look at her, I see ability, not disability. Being upset about Augusta’s diagnosis isn’t productive. Yes, there are moments when I get sad or start to feel overwhelmed, but they’re few and far between. And they’re nothing compared to the moments we have every day – seeing her beautiful smile, listening to her giggle as Maverick pushes her in the swing, watching her sleep on Daddy’s chest, cuddling with her before bedtime, laughing at her as she blows raspberries with her rice cereal. It’s these moments that remind us that she is still our beautiful baby girl...just with an extra chromosome.

So yes, Augusta is my Holland. It’s not where I planned to go. It may not be Italy. In fact, it’s better. And I wouldn’t board a return-flight for anything.

Copyright © 2011 Kristan.