Friday, March 04, 2011

"Words of Wisdom"

SMA kids, aka SMArtys as I like to call them, are inspirational...


SMA kids are
They teach us
Every day,
Leading like
Bright stars,

Yesterday I shared Rebecca's Poem.
Today I'd like to share another...

Kevin is Ethel's Son.
He has SMA,
But he is not limited by this disease:
Instead he is limited by - and this is my perception - he is limited by us and how we, the world, see people with disabilities and special needs...
Kevin, please forgive me if this is not what you meant... poetry can be so, so subjective..)

Ethel is a leading light in the SMA World as is Lucy, her partner in crime, over at The Suite Life of Lucy and Ethel, where they share stories, have some fun, spread the word about SMA and other genetic conditions, and "are determined to help squelch the wrath of SMA".

So... Over to Kevin:

Weighted down by my limitations
Freedom captivates my heart.
Invokes its spirit into the deepest corners of my being;
But I am limited.
The four wheels that confine do not limit me,
Nor the muscle weakness I’ve always known.
What limits me is a world blind to its surroundings."

"Freedom captivates my heart."

My favourite line... it's something that I hope for... 

I hope and pray that Kevin, Eilidh and other children with disabilities and special needs will experience "freedom (that) captivates (their) heart(s)" and that we, the global world around them, accepts them for who they are: that we see them first and foremost, their beauty and their brilliance; that we learn from their strength and grace; and that we do not remain "blind to (our) surroundings".

We need to learn from our children, for they will teach us, not only about themselves, but about ourselves and about life, too. 

A life that is different from the norm (what is normal anyway?) but no less special or wild and free. 

Imagine that...

Thank you, Kevin: hold on to that freedom within you and never let it go, for it is so much a part of you and who you are...

1 comment:

Ethel said...

You hit the nail on the head! Kevin does not think of himself as disabled. His ability to put others at ease allow him to continue reaching for the stars - and that's what he does. I well remember being where you are in the SMA journey. The year was 1995 and SMA had rocked our world. As time went on, I learned to take things one day at a time and let Kevin lead the way. He's 17 now and still showing us how life should be lived.

Keep the faith. Our kids are worth it.