Free shipping on all orders over $75🎄

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

RELATED: This is the Part of Special Needs Parenting No One Talks About

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.

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!

RELATED: I’m a Special Needs Mom and I Worry

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

So God Made a Mother book by Leslie Means

If you liked this, you'll love our new book, SO GOD MADE A MOTHER available now!

Order Now

Jess Ronne

I’m an author, teacher, wife, non-profit director, special needs advocate and mom of 8. A few years back, we traded in our Michigan snow shovels for humidity and sweet tea in the South & we’ve never looked back. You’ll often find me on social media chatting about faith, grief, food, simplicity, blended families, gardening, special needs, and everything else in between. 

So God Made Special Needs Parents

In: Child
So God Made Special Needs Parents

God knew all parents would love, honor and take care of their children. He knew they’d nurture them, fight for them and teach them all the things one needs to know about life. Yet, God knew there needed to be a particular kind of parents who would do all of these things and more for the special little bundles of joy He was about to send their way. So God made special needs parents. God knew there needed to be people to advocate for these amazing kiddos, to initiate the bridges to get them the services they’d need, to attend IEP meetings...

Keep Reading

Leaving the Nest is Not an Option for My Daughter

In: Kids, Motherhood
Mother, father, and teen daughter, color photo

The season I’ve been preparing for the past several years is here. This is the season my autistic daughter’s peers settle into their new college life or embark on some other momentous move towards independence. As I reflect on my first 17 months as a brand new mom, I remember forming close friendships with other new moms who I met in mommy-and-me groups, Little Gym classes, and various music classes for our pre-toddlers. We would seamlessly get together for weekly playgroups at rotating houses. We’d take our adorable babies to parks and out for lunch, chatting, laughing,  and snapping pictures...

Keep Reading

To My Son as You Approach Adulthood

In: Motherhood, Teen
Mother and son

I cannot believe how quickly the last 17 years have flown by. When I glance over at you, intently focused on the television screen with unshaven stubble presently on your face, I can vividly picture my adorable, chubby-cheeked toddler.  I remember every minute of each therapy session you tolerated multiple days a week like it was yesterday–always working extremely hard to overcome significant motor delays, never giving up on hitting those many milestones at your own pace. Your ability to invent creative solutions for mobility, like navigating around the room balanced on your head and feet in a tripod formation,...

Keep Reading