This is not a gift.

This is not a gift
The thrashing, slashing
high pitched screams
The inability
To regulate
The nightmarish dreams

This is not a gift
The sensory seeking
And constant smears
The messes
And elopement
Amidst many jeers

This is not a gift
The anxiety to a hilt
The flapping hands
And banging head
The thoughts laced constantly
With guilt

This is not a gift
The non verbal guessing game
A game we play
Because we must
But frustrating
all the same.

This is not a gift
The hours making calls
The sleepless nights
And haunting tales
The writing
on the walls

This is not a gift
Fighting tooth & nail
For every damn
experience
That might just help
My kid prevail

This is not a gift
The dollars always spent
on lifesaving meds
and tall safety beds
Which often deter
Paying rent
This is not a gift
Caregiver fight or flight
The isolation
And heart palpitations
The harrowing screams
Through the night.

This is not a gift
Constant PTSD
The tears
And desperate pleas
For anyone
To please see me.

This is not a gift
This version of the ‘bow
The red & yellow
Black & blue
The constant stress
And woe.

This part is not a gift
But other parts
They sure are great
Like patience learned
& kindness too
Towards those who are different
Than me & than you.

And the breakthrough moments
That make us smile
Those moments
achieved
When we walk
The extra mile.

And when he cups my face
And softly sings to me
And waves his head
So gently
To the sweet, sweet
Melody

The wins
That come with pain
They make it more worthwhile
But truth be told
And tell the truth
I will not spread beguile

This life is hard
For me & him
The loses piled high
We hold on tight
To faith & hope
Until the day we die.

Hope that those
Who follow us
Will learn & love
And prosper
Because we used
our time to teach
And never lost
Our luster

Luke’s Uncertain Future.

Yesterday I enjoyed a lovely conversation with a mama of a 20 year old total care daughter. As we chatted, I was quickly reminded that my Luke will be turning 17 this summer & as of yet, we don’t have a long term plan. Sure, I have aspirations & dreams but nothing cemented in stone.
So instead of being a sane individual & prepping for a move, or writing a book I’m under contract for, or launching a current book (or non-profit work or being present for my 8 children), I spent the day obsessively researching how to become a Medicaid provider & start a residential facility.

Of course I did.

I looked at vacant land, at huge pole barn kits that could be sectioned off into living quarters, duplexes, cheap commercial properties that my handy husband could renovate, & then I began to crunch numbers which only resulted in disappointing results. It’s a HEFTY price tag to have your loved one cared for 24/7 (try $20,000+ a month for ONE caregiver).
My point is this. As many of you prepare to launch your high school graduates off; full of anticipation & hope over a world of possibilities (& I’m doing this as well with my two oldest), there are those of us freaking out about the future of our unique kiddos.

In fact, I believe most of my grief with Luke has nothing to do with his diagnosis but much more to do with the uncertainty of his future & ours. If someone would say to me, “ At 22 years old he will move into this amazing residential facility where he will be well loved & cared for.” That would work! But no one says this to parents like me. We don’t hold our breath for admittance to college at 18 years old. We don’t hold our breath for admittance to anything!

No, we hold our breath that there will be an opening somewhere that provides peace to our souls before our child turns 40 or before we die. Whatever comes first.
We live for years in fear over what the future holds for us & for our children & me being me, I’m sick of the fear & in true Jessica fashion decided to take the bull by the horns & try to control the situation (which may or may not work – we shall see).

It is what it is.

But please, remember us.

In the middle of the big hoopla’s & parties & ceremonies to celebrate the typical ones, remember those of us who aren’t in a major celebratory mood or have much whoop de do going on because there aren’t any options for our grown kiddos.

And you know what, then do something for families like ours. As we show up to celebrate your kids, advocate for our children. Vote for change. Donate to the organizations making a difference in your community. Our societies are only as healthy as our caregivers and that includes caregivers of the typical & caregivers of those like Luke.

Just keep livin.

It Is Well With My Soul.

Over the past year I’ve witnessed the demise of many leaders; often pinnacles of faith who have fallen from grace, men and women who most assuredly began their careers with the noblest of intentions. Individuals who, through the passage of time, became enamored with self and blinded by fame & fortune; who lost perspective on their place within humanity because of a choice to turn from that still small voice.

I believe we each have the innate potential to fall far from grace; to perceive ourselves as better than we ought to. I know I do. Under different circumstances I could really embrace how special I think I am, hold on tightly to the perception that I’ve gotten this life thing figured out real good, lean into pride and her enticing offers & allow her to nibble away at my soul as she has with others who have climbed the ladder of success.

I think about all of this as I prepare to release a book and a documentary into the world.

Two creations that could potentially cast a pretty bright light on my life.

Perhaps.

I’m a first born, “me do it” Enneagram one who thrives on accomplishments and making a difference & these attributes are typically celebrated by society with lots of accolades and praise, & yes, this recognition is nice. I am human. It’s nice to be acknowledged for your achievements & even nicer still to have people perceive you as a good person; a person making positive strides in the steps of humanity; a respectful person with character. Of course it’s nice.

I’ve worked diligently & finished projects which might push me a little bit out of the shadows of anonymity & possibly into a world for which I am unprepared & yet –

I will continue to rise every morning
And diaper my 16 year old son
(which is as humility building as it gets some days)
And help him get dressed
And pour his juice into a sippy cup
And put socks upon his feet
And lace up his sneakers
And assist him to the car
And gently close the door but not until he says in his sweet sing song way –
“Bye! Have a good day!”
And I turn and walk away
With a smile on my face.
This is our routine
Me and my Luke
Every single day.

These monotonous actions serve as a reminder as they did with the apostle Paul – a prickly thorn that breathes humility into my swelling soul & deflates any pride that may try to sneak in; crushing it in an instant as my boy demands yet another round of –

“Paddy cake, paddy cake, bakers man, bake me a cake as fast as you can.”

And as his smile reaches for the stars, I lean into the understanding that he and I are created in the image of our Maker, one not better than the other, simply different with unique purposes & gifts, & the only attribute that makes us great is dutifully reacting in joyful obedience to the hard & holy tasks we’ve been called to accomplish.

Each staying faithful to the race we must run.

This uncomfortable road, this thorn of special needs & autism, this aching joy which serves as a gift – a gift that calls me to daily lay down my life & continuously keeps my head from ballooning & serves as a constant jab reminding me of who I am and who I am not by stripping away any pretenses. This gift which prepares a table before me in the presence of fame & fortune & pride; where Luke & I dine with the Shepherd feasting on humility & special needs & gulping down goblets of grace.

It is well with my soul.
It is well with Luke’s soul.
And that is enough.

Just keep livin

To My Son, I’m Sorry.

To my son with profound autism,

I’m sorry I didn’t try medication sooner.

I’m sorry that I was more concerned with side effects than possibilities.

I’m sorry you lived in an anxious mess of a mind for years because of my pride.

I’m sorry I assumed the worst and how it would affect you.

I’m sorry I hindered your abilities because of my inability to broaden my horizons.

I’m sorry I limited your communication when medication would have clarified your needs.

I’m sorry I restricted you from your siblings because the aggression, without meds, made you dangerous.

I’m sorry I sighed in resignation and helplessness over the thought of raising you forever when all you needed was a little help.

I’m sorry it took a global pandemic and a total shut down of the world as we knew it to set aside my pride & request something, anything, out of desperation.

I’m sorry for the years of progress I may have stolen from you because I was sure that medication would do more harm than good.

Son, I’m not suggesting that medication is always the answer or even your long term solution, but it has enabled your best life right here, right now & for that, I’m thankful.

From this day forward, I vow to be more open minded. I vow to continue learning & growing & expanding my ability to consider other possibilities & I vow to assume the best. I vow to never stop fighting for you.

I love you Lucas Aaron.

Mom ❤️

This was a difficult post to write & even more difficult to put out into the world, but I know there is a caregiver somewhere who needs to read these words. They need permission to look at options.