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 & me
A cacophony of hope.
And brain surgery at 3 days old
And again, a year later
And in 2009
And most recently, 2 years ago.

It all goes by so fast…

5 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.

It all goes by so fast…

The moves
One, two, three
Uprooted
Again
& again
& again
For resources
& services
& support
For you
And for us.

It all goes by so fast…

And here we are
6 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 in living
The years stretch on and on
Without an end
Because -
in the blink of an eye
I sobbed
Because -
You lived!
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...