Dedicated to the EXTRAORDINARY MOMS and DADS and PARENTS out there,
You held me in your arms, oh mother mine
When I was a mere wrinkled newborn babe
You gazed at me with love and joy
Just as all young mothers do.
I walked my first step and said my first word
With pride, you watched my every move
You expected me to walk the predictable path
Just as all young mothers do.
You watched me slip and slide away
Wondering why I didn't do what other kids do
I stopped making eye contact with you
And stopped the spoken words too
A well of sadness entered your eyes
The smile not always in place
Perplexed and puzzled
Do I know this child of mine at all?
But, you rolled up your sleeves
You never gave up on me
You took the other fork on the road
The one without the map
You struggled and searched for solutions
You fought endless battles for me
You put your fists up and took a stance
And you never gave up on me
Lost in the desert of sadness
You changed your perception of things
You summoned new strength and courage
From the unfathomable deep
You changed your whole life for me
And, you never gave up on me
You coaxed every small victory out of me
Pride overflowed from your eyes
Steps of this extraordinary child
Of quite the extraordinary mom
You do the job of a dozen people
And you never gave up on me
Exhausting is the journey you're on
Exhilarating only some of the time
I am not the typical child you thought you'd raise
New challenges lie in the path every day
To the extraordinary mom who holds my hand
And who never gave up on me.
I wrote this poem sometime during high school. But I feel it is still so relevant even today. This poem is dedicated to all those wonderful and amazing moms and dads and parents out there who did not give up on their disabled child. Thank you for your dedication and fortitude, in rolling up your sleeves and taking on the world for us, without even knowing how to go about it.
I think back to the story of the frog who climbed to the top of the well amidst discouragement from the crowd that the task was impossible; turns out the frog was deaf so had not heard the discouragement, so made it all the way to the top.
This is what parents of the children seen as having more challenging disabilities face every day. From the get go, they are nudged to tone down expectations of their children, not to expect much. Lady Liberty did not hold up her torch of the American Dream for that child.
Over the years, I have seen many of my peers disappear one by one into the void of the system (out of sight and out of mind of society), as the once eager and enthusiastic parents reach a state of burnout and exhaustion, with this constant barragement of discouragement and lack of support. Other adult peers who have aged out of the special education system are sitting at home with their aging parents as adult day programs want “easy to manage” adults (sheep!!), even as there is a dearth of support systems for the ones with “behaviors.” It is like a battle for the classroom placements and supports during the school district years, starting all over again in adulthood for many.
Thank you to all the extra-ordinary parents out there, for your support and embrace, when the world seems to abandon us at every new stage, not just when we were children but as adults and possibly even when we are middle aged. For many with more significant disabilities, our parents and siblings are likely the only family we will ever have. I wonder who will be there as this lifelong pillar, when we are senior citizens ourselves, where we are not just battling aging issues but also the nature of our disability may mean that not all of us reach a level where we are able to take care of ourselves and have to depend on the largesse of paid staff for a decent quality of life.
Parents, Yours is truly a dedication of a lifetime. Thank you.
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