My boy is changing
Before my eyes
What once I felt
As smooth soft skin
And tender limbs
Has transformed
To rough patches
And wiry black sprouts
And the songs have been replaced
With aggression
And anger
As his behaviors flare with indecision.

The Wiggles have left the stage
Their brightly colored spectrum dissolved
And “yummy, yummy” is no more
Metallica takes the place
Of innocence
And pulsating passion ensues
And explodes upon the environment
As joints ache
And bodies moan
Beneath the weight of the exchange
And the curtain rises
To display the headliner.

And yes, it is supposed to be like this
But no, it’s not supposed be like this.
My boy thought dead before his first breath
Now erupting with exhalation.

The constant

Some –
Should not have a front row seat
To the metamorphosis
That occurs
But sometimes
Some –
Don’t get to choose.

My boy,
My beloved child
Has challenges
Beyond his control
Or mine
And he’s incognizant
of the fact
That I am
A high roller
Money baller
Ticket holder
To the show
That first began
Within my womb.

Every change
Viewed up close
Center stage
While the soloist rages
Against the backdrop
of a mural
Splashed with red & yellow, black & white
They are precious in his sight
Left by those who came before
A symbol of life & love & pain.

And I whisper to the usher
“Any availability elsewhere?”
I consider sneaking away
To the nose bleed section
Where the big screen replaces
Intimate reality
And where I would no longer be privy
To the drops of sweat
Or peach fuzz
Or manic defiance.

I would move
If I could.
But I can’t.
So I continue to cheer his advances
And his wins
And his changing appearance
And his powerful masculinity.

I accept his body banging
And celebrate his flapping fingers
Swaying to the chaos
Of a private concert
For one.

I will embrace
The raging thirst
For growth
And transformation
For change equals
And breath
For me
And for him.

And yes, it is supposed to be like this
And no, it’s not supposed to be like this.


It Shouldn’t Have to Reach a Point of Desperation.

It shouldn’t have to reach a point of desperation.

That’s how my state generally determines when an individual will get bumped to the top of the list for assisted living.

Not an ideal scenario.

I recently heard that an available spot was immediately filled by a young man whose mother was diagnosed with cancer, and the father was unable to care for him.

Why does it take the diagnosis of cancer, death, or reaching the age where you physically can no longer care for your child before long term options are offered?

When we allow it to reach this point of desperation, the disabled individual not only has to process the traumatic events surrounding their frantic placement, but they also have to acclimate to a new environment, new surroundings, new people, and new schedules in the middle of an already traumatic occurrence.

Wouldn’t it be much more beneficial for the family to have these options before they are operating from a place of desperation?

Wouldn’t it be better for the disabled individual to be able to process the new surroundings with the loving encouragement from his or her family who visit & help make the transition as smooth as possible?

But this can’t occur if we ask families to operate from a place of desperation.

This can’t occur if the family is preoccupied as they address a life or death situation.

This doesn’t occur, and it’s a crying shame.

Families need options before the point of desperation.

Families need support.

Families need to know that there’s hope.

Just Keep Livin.