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down syndrome love my broYes.  I sure do.

We are the “bookends” in our family; Michael and I.  I’m the oldest of seven at 51… Mike’s the youngest at 27.  Michael was born about a year after I got married.  I grew up in St. Louis, but had moved to Kansas City after college, so the two of us never actually had a chance to “grow up together”.  But there is now good news.  Really good news for me.  My mom, dad and Michael are moving to Kansas City.  To say that I am excited does not even begin to touch the surface of what I am feeling. Just typing that fills my eyes with tears. There is just so much time to make up for… and I absolutely cannot wait!!!

Late night munchies...Mike Mom Dad Formal night

Mike loves dessertdown syndrome nuff said

Mike in headphonesMike dancing

Poem: “Welcome to Holland” by Emily Perl Kingsley

November 12, 2008

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 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…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 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.

And so Mom, Dad and Michael; we are all moving on to a fresh new chapter. Your big move to Kansas City.  It may not be Italy, or even Holland; but I can tell you it’s gonna be great.  Because I love you, and that’s enough.  And so a song for you, “Mike the Singer”… from someone who loves you very, very much.  xo

“He Ain’t Heavy; He’s My Brother”

My face may be different But my feelings the same I laugh and I cry And I take pride in my gains I was sent here among you To teach you to love As God in the heavens Looks down from above To Him I’m no different His love knows no bounds It’s those here among you In cities and towns That judge me by standards That man has imparted But this family I’ve chosen Will help me get started For I’m one of the children So special and few That came here to learn The same lessons as you That love is acceptance It must come from the heart We all have the same purpose Though not the same start The Lord gave me life To live and embrace And I’ll do it as you do But at my own pace

Down syndrome, also known as trisomy 21, is a chromosomal condition caused by the presence of all or part of a third copy of chromosome 21.  That is why today, March 21 (3/21) is designated as World Down Syndrome Day.

Links: National Association For Down Syndrome / Special Olympics

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