The test results have come back, and sweet little Aubrey does indeed have Down's Syndrome. On Sunday I told my Relief Society Secretary that they thought my new niece had either Down's or Turner's Syndrome. She has a little brother with Down's Syndrome, and works extensively with the Special Olympics. This was her reaction:
"CONGRATULATIONS!!! Oh that is so exciting! If I don't get one on my own, I plan on adopting a child with disabilities!"
How wonderful would it be if we all reacted that way to news of a baby with disabilities? A world where we realize that Heavenly Father sent them this way, and that they are still perfect, just in a different way. After all, what is normal?
Karl & Liz have been amazing through it all. On Liz's blog she wrote: "Sometimes our lives don't always go the direction we originally saw it going, but that doesn't mean the road we end up taking won't be just as fulfilling and satisfying as we had first planned."
We are so excited to have this tiny child in our family. She is a miracle. She is a darling sweetheart. She is perfect.
On the door of the NICU there is the following essay. I have thought it so profound since the first time I read it:
Welcome to Holland
By Emily Perl Kingsley
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.
I for one am very excited for this journey to Holland. I love this little girl, and feel very blessed to be her aunt!
6 comments:
I've always loved that essay. And yes, Holland is every bit as beautiful as Italy, in its own way. Congratulations on a beautiful new niece!
That's a beautiful essay and a beautiful perspective. Congrats on your beautiful niece. She's lucky to have SUCH great parents and SUCH a great extended family.
Ever since we first knew that there was something different about her, your post title has been my constant thought-- she is just a different kind of perfect, but absolutely perfect none the less.
So i have to tell you. The DS rep from the valley came in to chat with me this morning and she gave me a copy of that poem. She said the lady who wrote it was a mother of a down's syndrome child and that she lives here in Utah. She said that the mother actually wrote a second part to that story and gave me a copy of it as well. I haven't read it yet but I'm excited to.
Thanks for all the love and support you have given us! We couldn't do it alone.
That is a beautiful story. I think we will love our ride with little Aubrey!
She is beautiful. I too think a 'congratulations' should be in order. I (as you know) absolutely love people with disabilities and would consider myself lucky to be entrusted with someone that special.
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