Happy World Down Syndrome Day!

That's okay if you didn't get us a card, I don't think Hallmark makes one anyway. But my gift to you is a favorite short story that sums up the whole experience of all this pretty well.

The author of this story has a child with Down syndrome, but this is one of those stories that every mother with a special needs child receives at some point from someone. It's iconic and it's popular because it captures so perfectly the feeling and idea of this unique road you are put on. I know I read it quite often and I have given it out to a few people I know.

Welcome to Holland

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.

© 1987, by Emily Perl Kingsley. All rights reserved.

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I hope I can be viewed as a credible person to express this, but I can say that Down syndrome is not the end of the world. There are far worse things that can happen to your child. Losing a child before they are born or after would be much worse. Having a child diagnosed with a terminal illness that would take them at a very young age would be much worse. Having a child that grows up to do very bad, illegal, or otherwise hurtful things to themselves and others would - in my mind - be a much worse feeling. When the doctors first utter the words 'Down syndrome' it's like being kicked in the stomach - it hurts at very deep level. It's very normal for parents to go through a grieving process for the child they thought they were going to have. But the feeling doesn't last forever because you realize...you still have a child. He or she has always been your child and there is still hope for a happy future. You will love that child and even come to the point where you wouldn't change anything about them if you could.

When we see Grant now, we first see his sweet smile, easy-going personality, friendliness, and a little boy that loves to figure out how his toys work. We see or remember the Down syndrome second. I think many other parents would agree that initially it's all you think about, but then the happenings of life and loving take center stage and your child is...well, just your child. Grant having that extra chromosome is just part of who he is. We often joke now that he's the normal one and the rest of us are just chromosomal-deficient! If having that extra chromosome makes up the uniqueness that is Grant, we love it and accept it wholeheartedly and wouldn't change a single thing about him. Having Grant in our family is not something we've learned to endure or 'get through', it's something we thoroughly love and enjoy.

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Well, thanks for sticking it out this week - I know it was tons of reading, but I hope you got a little better glimpse into our life and experiences. If you know anyone that receives this diagnosis for their child, encourage them to seek out other parents actually raising these children and not to rely solely on those with no real-world experience with Down syndrome (cough...genetics "experts" or doctors...cough, cough) for the answers to their questions. No offense to the medical community - who of course do deserve my respect for their extensive education and knowledge on the body - but parents are the real experts.

Thank you for all your kind words as well - it was a treat to read them. I'll be flying home today - Tuesday is Grant's birthday and we're planning to get in a few fun hours at Disneyland to celebrate! (gotta use those yearly passes before it gets too close to Baby #2 time!)