A Forever Caregiver








You celebrate the beating heart
And I cry when I see the bulging head.

You are wheeled out draped in flowers & balloons
And I sit vigil as the beeping continues through the night

You cheer the stumbling steps
And I drive to another therapy appointment

You wave goodbye at the bus stop
And I sit through a meeting of “nevers”

You buy beer for the BIG game
And I buy a new TV to replace the smashed one.

You punish the backtalk
And I longingly wish for words

You order IKEA for a dorm room
And I order a bigger size adult brief

You sign papers for a lake house
And I sign papers for an adult foster care home

You pay for a wedding
And I pay for 24/7 care.

You set up a will
And I set up a trust

Your neck is squeezed tightly
And I feel the bristle of rejection

You wine and dine with friends
And I intersect calls from case managers

You cradle a grand baby
And I vet a new roommate

You travel the world
And I continue to hold my vigil.

Your days are long & your years are short
But my days are long & so are my years.

We both are “mom”
But I am a forever caregiver.

Just keep livin ❤️

I Refuse to Hide Anymore.

I refuse to hide anymore.

And I know it’s really hard and exhausting and at times, still very isolating (because truth be told, our kids aren’t exactly a welcome invitation for social interaction, right?)
But – we’ve been brave lately. We’ve come way out of our comfort zone with a child with profound disabilities, and we refuse to hide away in our home – even if it’s hard; even if it causes us discomfort; even if it causes others discomfort too.

We went to a school picnic last night, and we sat on the outskirts of the event because, well, Luke was pretty much “ALL DONE!” when we arrived & we ate food and a few brave souls ventured up to our table and said “hello.”

We exposed ourselves. We exposed our life. We entered into an uncomfortable situation & we did it because it’s time for the world to see families like mine. It’s time for all of us to come out of hiding because it’s time to get the resources and support we need and that only happens when people see us.

Please come out of hiding with me. The world needs our stories.
Just keep livin.

Face your storm.

I was recently told that instead of running away from danger, Bison turn to face the storm & this admission struck a nerve.
Bison turn to face a storm?
Surely that goes against every instinct in their bodies, right?
As people, we tend to run.
Run from conflict.
Accept the status quo.
Accept what the media broadcasts or our caseworker tells us or what the world wants us to believe – true or not.
“There’s no hope.”
“There aren’t any funds.”
“Your situation will never change.”
And we walk away, defeated, with our tail between our legs.
But –
What if,
As we walked away, we paused.
& we prayed.
& we beseeched the heavens for courage
And then –
Instead of running, we slowly turned around.
We turned to face our tormentor
Turned to face our problem
Turned to face our addiction
Turned to face our doubt
Turned to face the gigantic hurdle that separates our child from the services that he or she desperately needs & instead turned towards hope?
Can you even imagine what a movement like this would look like?
What a movement like this could accomplish?
What a movement like this could do for those who need something to live for?
Turn around dear friends.
Turn & face your hell.
Look your storm straight in the eyes and dare her to make a move.
And then quiet your nerves & begin walking, step by step, towards the faint ray of hope you see in the distance.
If enough of us resemble the Bison, we will change the world ❤️
Just keep livin

Assume competence versus accepting limitations.


Assume competence versus accepting limitations.

It’s a fine line, isn’t it?

My son has –
profound autism
ID – intellectual disability
Low muscle tone
Tethered spinal cord
Chiari malformation
Limited vision

I would not assume that he is capable of running a marathon. I also would not assume that I’m capable of running a marathon, lol. I accept the limitations within his physical capacities, but it’s a bit trickier with an ID limitation.

The “experts” state he’s at about an 18 month old level, but I don’t believe that Luke’s intelligence can be quantified in typical terms. There are 18 month old children who are capable of comprehending ideas and concepts that Luke is unable to comprehend.

For example,
Every single morning as I dress him for the day, I’ll start to slip a fresh, clean shirt over his head (red today), & he’ll abruptly stop me, exert his autonomy & say –
“Change it.”
He wants a different shirt.
Or so he says.
I walk over to the closest, grab another shirt, & he allows me to slip it over his head except –
I don’t get a different shirt. I simply walk over to the closet & bring back the exact same shirt that he initially didn’t want – or did he?
That’s where ID seems to be present. It has nothing to do with autonomy or wanting a different shirt in this scenario. There’s something in Luke’s mind that has to simply say “change it” every morning. He doesn’t even mean change it!

I think sometimes as caregivers we do assume so much competence that we forget to accept some limitations & in failing to accept these limitations, we are in essence, failing to accept who these individuals truly are – beautiful image bearers of their Creator exactly as they are.

It’s a fine line, isn’t it?

Just keep livin.