Thursday, April 30, 2009

Remember You're Unique, Just Like Everyone Else

My title is borrowed from an email my mom had forwarded to me. It was a list of zen teachings, which I found rather humorous, and the one that stuck to me was "Remember you're unique, just like everyone else". I think it's because I am relating it to much of the literature about Down syndrome for new parents, which is so much better these days than it was 10, 20 and more years ago. Sadly, many years ago, the message to new parents of babies with Down syndrome was "Put your baby in an institution and forget about him." Today, in most places, the message to new parents is "Congratulations! Take him home, get to know him and love him, as all babies deserve. You are about to embark on an amazing journey." To this day, advocates for Down syndrome continue efforts to replace outdated information that OB-Gyns and pediatricians may have. (Thank you!!)

When Bill and I had first found out that Matthew had Down syndrome, I remember how we were both overwhelmed with uncertainty and fear. It was our unpreparedness and the lack of knowledge about our new set of circumstances that caused our initial grief. How different would our lives be? How would society treat us? What was Matthew's future going to be like, what with the seemingly endless list of potential health issues that he would be predispositioned to because of Down syndrome?

That was less than 2 years ago, and today I see how having Matthew in our lives has opened many doors, opportunities and experiences. We still worry about Matthew's future, but what parent doesn't worry about their child/children's futures? My friend, Amy, emailed me recently and I love how she summed up everything she has read so far about babies with Down syndrome. She said,
"Abilities and issues vary so widely, just like for babies without DS, so the bottom line for us all is that we need to learn who our babies are as individuals – what a colossal challenge!"
Matthew has some of Bill's traits and some of mine, and even some of his grandparents'. He has Bill's hairstyle, my hair color, Bill's wide feet, my short fingers, Bill's face shape, my nose and eyes. He has our stubborn streak and silent determination. He looks like my dad when he's asleep. He has the simian crease on the palms of his hands, which is typical trait for people with Down syndrome, but Bill's dad has it too on both hands. (A simian crease is a single line that runs across the palm of the hand. People normally have three creases in their palms). Matthew is really more like other typical kids than unlike them. He will walk and talk, go to school, make friends, hold a job, and add richness to many people's lives. He is no different than you or I, yet he is a unique individual... just like everyone else.
The Creed of Babies with Down Syndrome
(Author unknown)
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


Chipper said...

Hey Ria, love the title! Great to see you've such a wonderful family. All the best!

Ria said...

Thanks for dropping by, Hap!

Anonymous said...

Wow Ria!
Considering you had just wowed me a couple of entries (actually most entries) ago, I honestly didn't expect to be "wowed" again so soon. And yet, here you are, wowing me. Thank you!!! Wow me at will- I love it!!!!
And I would add that Matthew has enriched my life & the lives of my children tremendously, and our world is bigger, and better, with him added to it. Just one more reason for us to love & appreciate him!

Ria said...

Kris, I will definitely post more "wow" entries. And I will continue to "wow" you in our scrabble games. haha!

Anonymous said...

Indeed WOW! I love the words "you are about to embark on an amazing journey". No doubt it will be a very enriching experience for both you and Bill as you journey with Matthew. He will, as you said, add richness to many people's lives!
Tita Tess