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 ❤️

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
Scoliosis
Tethered spinal cord
Chiari malformation
Anxiety
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.

FREEDOM

FREEDOM 🇺🇸
It’s something we often take for granted until we lose it, right?
Freedom to work
Freedom to vote
Freedom to worship
Freedom to choose how many children we have (or don’t have)
Freedom to marry who we want
Freedom to change things when they’re not working
Freedom to pursue our dreams!
Freedom to rest
Freedom to grieve
Freedom to celebrate!
Freedom to move, if we so choose
Freedom to reach our highest potential!
Freedom to live & breathe & be ourselves in whatever capacity we desire.
BUT –
This freedom can be elusive for some –
Not entirely graspable –
Or palpable –
Or attainable.
Freedom for those of us with profoundly disabled children can look very different & not so “free.”
The inability to attend the local parade because of sights, sounds, & lack of adult changing tables.
The lack of job options that accommodate the demands of the caregiving life.
The hinderance to freedom to choose the firework show because of sensory overload.
The ache that we feel as we decline a cookout invite because of inaccessibility.
The inability to rest because of constant fight or flight.
The divide & conquer with hotdogs & s’mores in our own backyard because of strict, immovable routines.
The fear of moving to a new state because we’ll lose our waiver spot.
The lack of communal worship because there are few special needs ministries.
The inability to vacation because of elopement & meltdowns.
The void of play because parks don’t spend tax payer dollars on big kid options.
The isolation of home which sometimes feels like a prison because the world is not made for children like ours.
FREEDOM
It’s a gift that’s not guaranteed – not even in America.
Notice the families with needs.
Notice how your freedom might look differently than theirs.
Notice & then do.
Do something to help them feel a little more free.
Do something to invite them in
or show them that you care.
Create a special needs ministry.
Reserve spaces of quiet at the local parade.
Set aside your fear & learn.
Ask questions.
Advocate for adult changing tables in public restrooms.
Offer respite.
At the very least, offer a meal.
Recognize that your freedom is not their freedom & then in gratefulness, act accordingly.
Happy 4th of July 🇺🇸
God bless America
Just keep livin