
Benjamin was five months old
When his first therapist
Crossed our threshold
When your child has a disability
Strangers are given unusual access
If you’re lucky
These strangers become
Partners
If you’re even luckier
They become
Friends
Before Benjamin
I was taught
That when a child
Is diagnosed
Parents grieve over the loss
Of some preconceived
Version of their child
I was satisfied by this explanation
After Benjamin
This idea never felt
Quite right to me
It’s too simple
Recent events have more than reminded me
The human race
Believes in a hierarchy
That honors a narrow view of what is valued
And concludes
That it takes an exceptional process
Over many years
To accept a disabled child
This may be the greatest falsehood
I’ve experienced as a parent
My acceptance of Benjamin was never the issue
For the past twenty-one years
I have lived in a fluid state of grief
Because this world insists on a hierarchy
That devalues Benjamin
I have grieved because outside
Our family bubble
Benjamin is limited
As to where he is accepted
For most of his life
This central grief
Has been subdued
By the comfort
Of the loving cocoon
Created by Benjamin’s teachers and therapists
Over these past few months
I’ve grieved over the way COVID-19
Interrupted Benjamin’s progress
And stole his last moments in school
Where he was immersed
In the only absolute sense of belonging
He’s ever had outside of our home
I have felt the weight of knowing
My greatest task
Every day forward
Is to be sure Benjamin doesn’t feel the loss of his teachers and therapists
Especially because our efforts to give him a meaningful transition
Have been indefinitely halted
By a virus
We’ve yet to get a sturdy grasp on
Even though there is a frustrating amount of people
Who are privileged enough
To ignore science
Who not only think
But are comfortable enough to say
That only the most vulnerable
Need to confine themselves
And that people like Benjamin
Require more than they are personally willing
To be responsible for
Even though they act as if
The marginalized in our country
Are like a virus
That requires a host to live and thrive on
And therefore should not be considered a part of
We The People
Even though Covid-19
And our political condition
Have highlighted a lack of equity
I will choose to be grateful
For Benjamin’s continued health
For the love he has been so very fortunate to receive
From everyone invested in his life
For these past twenty-one years
I will choose to believe
There are more people out in the world
Waiting to embrace my son
And I will forever cherish
The transitions we’ve experienced
With Benjamin’s teachers and therapists
From strangers
To partners
To friends
My heartfelt thank you to everyone at Pillar High School
We miss you already
Thanks Joanne. And thanks to all Benjamin’s helpers.
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So beautifully said. Congrats!
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Thanks Ann!
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grandma thanks you for a wonderful job for all your work not just for BEN but for all the students at Pillar School
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Joanne: your words whether poetry or prose reveal your heart’s depths so others can grow. Another milestone for your family!
My blessings always, Lynn
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Thanks Lynn. Nice to hear from you. 🙂
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Such a beautiful tribute to our school. I am happy that I have had the opportunity to know Ben and you over the years. I hope that Ben will thrive in the future with his wonderful family to support him.
Bette
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We are so happy to know you Bette! xoxoxoxo
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Ben was always been such a bright light in our school. He will surely be missed. I pray he finds more loving people in his life to care for him as he moves on to the next chapter in his life. Hope you al stay safe!!
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Thanks Lori! xoxoxoxo
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