We are the Stow Family and this is our story. Our lives are blessed by Love, Joy and Hope. Follow our sometimes interesting stories on loving our two boys, exploring parenthood, and celebrating a little extra - two parents, two boys and an extra chromosome!

Friday, March 19, 2010

World Down Syndrome Day 21.03.10

So here we are - our second World Down Syndrome Day, and yet it feels like Down syndrome has been a part of our lives for much longer (like an old friend).

We know it by heart, I sometimes feel.

And then again, it just isn't the big heavy cloud floating over our lives that we thought it would be. It keeps itself very politely in the background, never overbearing, never overwhelming. Every now and again we pay it some attention - like when Malakai has therapy or we consciously make a decision to 'work on his fine motor skills', for example.

Every now again I actually catch myself remembering that Malakai has Down syndrome - how odd? We just don't allow it permeate every aspect of our lives. Our little boy is our little boy, like any other amazing, beautiful, precious child.

So, what I'm trying to say is this:

As a person who may have a prenatal diagnosis or to parents who have had a child recently with Down syndrome, it is all a matter of choice. You can choose to focus and run your life around the diagnosis, or you can choose to let your little one just be. Be gorgeous. Be loved. Be amazing. Be perfect.

At first it may be scary, but that feeling passes very quickly (quicker than you'd ever believe I tell you!). When you're over it you'll realise that your baby, just like any other, is super soft and smells so beautiful, that your baby loves cuddles and adores your attention. You'll find that your baby will develop a little personality and they'll bring such joy into your life.

And then! Let me tell you! When your baby starts to sit, crawl, walk, and eventually attends his first day at creche - well, nothing beats that feeling!

I believed once that it would take more... more effort, more love, more time to raise a child with Down syndrome. Well, I can't speak for anyone else, but my honest experience is that that is just not true. I have not spent more of anything (time, love, effort) on Malakai - no more than I would have should he have a typical number of chromosomes.

I believed once that it would be really hard... hard work, hard to cope, hard to accept. Well, I can't speak for anyone else, but my honest experience is that that is just not true. I never found anything to do with Malakai (and his extra chromosome) hard. It's just hard to not want to eat him up!

I believed once that I wanted to go to Italy... for the sports cars, the flashy clothes and the trendy shops. Well, I can't speak for anyone else, but my honest experience is that that is just not true. Holland has been the most welcoming place, filled with warmth, sincerity, and purpose. I just love the tulips, the windmills and the art.

So this is my rather haphazard post for World Down Syndrome Day - if anyone's been able to actually follow my train of thought...

I love my son so much it hurts. I look at him and I see it all - peace, determination, sincerity, joy, love, adoration, beauty and perfection.

plain. and. simple.


時尚 said...
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Lianna said...

This is a BEAUTIFUL post and I think it reflects much of what parents, like us, feel for our children with a little extra.

Big hugs!

Cheri said...

Hi Loren....I wanted to let you know I just gave you a "Sunshine Award" on my blog in honor of World Down Syndrome Day. I love reading your blog and love that you write from your heart! I've loved watching Malakai grow... I think I first started following you when he was just a little, little guy ;). Thank you for sharing your beautiful family with us!

Elriza Paul said...

My friend, you never cease to amaze me. All I can say is HEAR HEAR, and I think it's wise words for ANY parent to live by. Loving what is and being able to cherish every moment once you realise that "what is" is perfect...always!