You Have to Grieve Normal








You have to grieve normal
I advised as she cried
You have to grieve normal
Or you’ll feel like you’ve died

He’s not what you wanted?
She’s broken, you say?
He’s medically fragile
She can’t learn to play?

Rage, wail and sob
Shake your fist at the sky
Wrestle with the Almighty
And beg for a why!

Cry in the shower
Breathe through the fear
Don’t abandon yourself
And keep your loves near

Let company in
Lest misery take a toll
Eat food and sip wine
It’s good for the soul

Smile if you can
If you can’t, no big deal
They’ll be brighter days
Brighter days when you heal

These children are God’s lessons
I don’t say this in vain
These children will teach us
Through all of the pain

That life is much more
than pride, looks, or wealth
Life is joy, peace, & love
Kindness and health

So take a deep breath
You’ve got this, I swear
For the Almighty appointed you
A fierce mama bear ❤️

A Special Needs Mama

A special needs mama
Is weary in her soul
Day after day
Has taken its toll

Years of sleepless nights
Many thankless jobs
The constant demands
And heart wrenching sobs

The daily needs grind her
Almost to the bone
The exhaustion, the diapers,
all of the unknown

A son she prayed for
Who’s unruly and wild
A son she prayed for
Who’s misunderstood as a child

But wipe her tears she must
And get on with the day
For duty calls again
Duty – without pay.

The phone calls, the letters,
She’s desperate for a break
Why don’t they help?
She thinks, for goodness sake.

She’ll make them see
She’ll make them care
She’ll share her story
Cuz she’s a mama bear

A special needs mama possess a strength
To rise up and fight when others will shrink
A yell or a whisper, a plea or a shout
She’ll do whatever it takes to get past all the doubt

At first, barely a word
And then gaining in power
She’ll tell of her trials
Without nary a cower

She’ll advocate, scream,
pound her fist if she must
She’ll stare down the judge
leaving him in the dust.

Cuz that’s how change happens
With boldness and brawn
That’s how change happens
To usher in a new dawn

So raise your voice mama bears
Raise them loud and be bold
For change only comes
When we don’t do what we’re told.

just keep livin.

When He Outgrew Cute

When he outgrew cute
The looks changed from compassion to concerned
Towards him
And towards those who supported him.
And sometimes disgust
Overshadowed concern
As he stubbornly clung to his ways.

When he outgrew cute
The calls increased
Calls desperate for help
Desperate for summer options for a fifteen year old in diapers
Desperate for respite
Desperate for adaptive equipment
Desperate for anything that would assist a non verbal man child
Or anyone
And the voices were silent
Or they whispered –

When he outgrew cute
His movements were no longer celebrated
But instead feared
Violent head banging
Aggressive pulling
Dangerous optimism
With the strength of a man
And not that of a child.

When he outgrew cute
The damage began
Damage to walls
Damage to others
And damage to himself
And this damage
Wreaked havoc on more than just objects in his path.
It wreaked havoc on psyches as well.

When he outgrew cute
The walls caved in
And the house became a tomb
And the isolation suffocated those within
As they desperately yearned to belong
To something

When he outgrew cute
Milestones were no longer encouraged
And his future grew dim
And symptoms of PTSD set in
For those who loved him and had been
Rattled by his screams for years.

When he outgrew cute
Mood altering drugs were doled out like candy
One option after another
For him
And also –
Suggested for his caregivers.
Drugs to dull the pain
Drugs to pacify
Drugs to silence the demons

When he outgrew cute
She outgrew herself
As every ounce of strength was poured into him
And she got lost in the daily grind
Lost in the sleepless nights
And invisible behind the never ending tasks

When he outgrew cute
She outgrew silence
And she raised her voice
To join the cacophony for change
And her battle cry rose –
A better tomorrow!
For him
And for those who loved him.
Because when he outgrew cute
He outgrew society
And that’s simply not an option.
For anyone.

When he outgrew cute
She found the strength to move forward
To move towards advocacy
And move towards hope.
She found the strength
To keep going
And keep growing
And she found the strength
To just keep livin

Life of Luke – A Day in the Life of a Special Need’s Caretaker

Here it is. A day in the life of Luke or more specifically, a day in the life of a special need’s caretaker – yours truly.

Honestly, it’s kind of scary to put our life out there like this. It’s one thing to write the truth with the freedom of choosing words that paint the perception I want to offer, and it’s a whole other experience to actually show the truth – messy fingers, annoyance, and zero makeup. What if people don’t agree with how we’ve chosen to operate our lives with a special need’s child? What if they mock how we look? How I look?! Can I handle this? We shall see.

Most of what you will witness can speak for itself but some of the footage portrayed needs an additional explanation.

1. Luke’s official diagnosis is SXI – severe multiple impairments. Luke has a shunt because in theory he suffered a stroke in utero. Luke is extremely healthy. Luke continues to progress in every aspect of his life which is a blessing and a difficulty because he’s not very content most of the time.

2. You may notice a lack of sheets, pillows or blankets on his bed. This is a sensitivity issue for him. For some reason he only wants the big blue blanket.  If we put sheets or pillows or additional blankets in his bed, he will rip them off and get rid of them asap.  He usually wears a footie sleeper for warmth.

3. Luke’s wheelchair. Yes, Luke has a wheelchair.  No, he’s usually not super excited about sitting in it.  He won’t sit in it if we aren’t moving so putting him in his wheelchair to hang out with the family isn’t an option.  If we were to attempt this, Luke would begin violently thrashing his body back and forth – the chair moving as well – while offering a high pitched awful sounding scream.  This would continue until he either hurt himself or we removed him from the chair.

4. Luke rarely eats meals with us as you’ll notice in the video. His feeding chair doesn’t fit well in our smaller dining room and even if it did, we probably wouldn’t want Luke at the dinner table. Meal time is already intense with 8 kids. Luke was blessed with his mother’s long, thin, monkey arms. These arms are capable of reaching almost anything including all of the dinner plates and food. Luke also has a tendency to scream a lot – especially when hungry. So the grabbing and the screaming and the shuffling all of food out of the way, and the additional little voices lending to the grand cacophony of noise and chaos is just too much, and we made the decision, on behalf of our sanity, to feed Luke first followed by a bath, get him settled into his bed, and then eat dinner with the rest of the kids.

This documentary is just a mom with an Ipad portraying her child with profound special needs so obviously not a recipe for the most professional work of art you’ll ever see. I apologize for any sound issues, all the “ummmms”, and use of “ok and so” about 500 times. I apparently lack an extensive speaking vocabulary. FYI – I am very open to a professional invading our life if there’s a film maker who would like to tackle this project and give it a more polished (or brand new!) look. In the meantime YOU dear blog reader can help spread the word by liking, sharing, and commenting on this post. By engaging in some small way, you are helping special needs caretakers raise awareness which will in turn (eventually) lend to more support and resources for our families. You can also follow along on Luke’s journey by finding him on Instagram at Life of Luke or the whole family at jessplusthemess on Instagram and Facebook.

Finally, I am open to questions as long as they are respectful. The second anyone turns disrespectful towards me, my child, or anyone in my family, or come after me anonymously, I will cut you off. Period. I ain’t got no time for that. Enjoy and Just Keep Livin!