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Friday, February 3, 2012

Poem & Reflection


Some days

All that I can see

Is every DISability

The little things

You cannot do:

Pull my hair,

Untie my shoe,

Say my name,

Rock the chair,

Look up and say

“Sky is blue”,

Draw a picture

With big red trees,

Run up to me,

Hug my knees,

Pick a flower

And hold it up,

Spill your milk

Out of the cup,

Throw your lunch

Against the wall,

Or even roll

A purple ball.

But then I look upon your face,

Trusting me in every place,

And then it’s clear

Just how lovely and how dear

Having you to love can be

And for a heartbeat,


I wrote this poem in the early 1990’s, most likely when Hillary was about 3 years old. She hasn’t changed much, she’s bigger, and we’re certain that she understands most of what’s said to her, but she has no way to really let us know. It’s ok, I’m used to it now, after all it’s been nearly 20 years. But every once in a while all I can see is what she is not able to do in relation to her peers. I don’t mean her peers who have no disability, but rather her peers who do have disabilities. Even among those peers, she is generally the most affected by an assortment of challenges. This is something I’ve been struggling with this week after spending last Sunday afternoon at a teen/adult Special Olympics bowling competition in which Hillary was competing.

This wasn’t my first time at this event; we were there last year as well. It’s one of the nice things about Hillary’s school program that they compete in the Special Olympics, and with a ball ramp and some assistance Hillary can participate as well. She used to participate in a league for children with disabilities until her bowling buddy and one of her first friends from infanthood, Francesca, passed away. We didn’t have the heart to find a new partner after that. Any how, when the opportunity presented itself we took advantage of it. Special Olympics is a happy time for the athletes and for the volunteers, they all seem to be enjoying themselves and the athletes are so proud of their accomplishments. Even as Hillary received a bronze medal, however, my stubborn heart refused to be lightened. My heart was hurting from the re-realization that among the minority that those with disabilities are, she is a minority. Most of the other participants can walk, and even of those who were also in wheelchairs, she was the only one who can’t talk, and to the casual observer seemed to be indifferent to those around her. I have to give the volunteers credit for at least trying to engage her, and the other participants tried to talk to her so it wasn’t that she was being ignored. Still my heart remained heavy.

One day I will be able to find the joy in this day. I will be able to see the happiness that escaped me then and eludes me now. First I must once again grieve the daughter as I dreamed her when she was born, and truly see the amazing one who is with me.


Matt D said...

My google feed searches out poems for me, and yours came up -- so I'm not sure about the background here other than what you wrote ...

But the poem was very poignant and meaningful.I mean, sometimes we appreciate the wrong things, and it takes someone special to teach us what we really ought to appreciate. At least that's what came through to me reading your poem. Thank you for it, and best of luck! :)

Kathi said...

Sue, this was beautiful... and has the energy of life and living in the words... I've found that life is definitely full of grieving and celebrating... sometimes all at the same time.. and over the same things.... Love your heart's sharing....