It all goes by so fast . . . 

The in utero diagnosis.
The constant prayers.
Your frail body being lifted from the abyss, wailing for life.
You and me—a cacophony of hope.

And brain surgery at three days old.
And again, a year later.
And in 2009.
And most recently, two years ago.

It all goes by so fast . . . 

Five years of sleepless nights.
The studies.
The pokes.
The prods.
The wins.
And walking at 8!
And talking at 15!

And the lows . . . 
Aggression.
And screaming.
And meds.
And more brain surgeries.
But not for you.
Biopsy confirms.
Terminal.
Cancer.
A funeral planned.
And a wedding, too.

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It all goes by so fast . . . 

The moves: one, two, three.
Uprooted again.
And again,
And again.
For resources.
And services.
And support.

For you. And for us.

It all goes by so fast . . . 

And here we are, six months from your 18th birthday when you become a legal adult.

Except that’s not how it works for us.
I have papers that state otherwise.
Papers that tell the truth.
That you will need me forever.
Papers that grant me control.

And I have mixed feelings about this type of control.

“As long as you’re living, my baby you’ll be.”

A beautiful sentiment—for most.
But for us . . . it’s more literal. Isn’t it?

It all goes by so fast . . . 

We’ll make plans for your future soon.
Away from home.
And what that might involve and include for everyone.

We pray.
And yearn.

And most of all, we hope for a beautiful, thriving community.

For you.
And for us.
Someday.

It all goes by so fast . . . 

The days are long, and the years are short.
And that’s partially true.
My boy.
My son who defied every odd.
And lived.
And is living.
The years stretch on and on without an end.

Because in the blink of an eye,
I sobbed because you lived!

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And now, I sob again
Because I’m staring at this stack of papers—
Papers that state the clinical truth.
But not the whole truth.

Not the mom with her fingers crossed behind her back kind of truth
Not the heart truth.

Papers that simply state WHY—
Why I will forever be your person.
Your cheerleader.

Your caregiver.

It all goes by so fast . . .

The days are long, and the years are short.
Unless you are like me—a forever caregiver.

Then the days feel a bit longer than average.
And the years do, too.

But that’s OK.
Because I’m your person.
My Luke.
My forever boy.
And you’re mine, too.

It all goes by so fast.

Originally published on the author’s Facebook page