I Know.

As a caregiver to a child with intense and profound special needs, I know that my voice is relevant in this space because of my experiences.

I know that I sigh deeply when people who have no experience with autism offer suggestions on behavior modification.

I know that I want to throttle well meaning folks when they say to “hire help” when there is very little help to be hired or the available help comes at a hefty price tag that a family of ten can not easily afford.

I know that I want to scream when people suggest that we “take him with us – he’ll be fine” knowing he won’t be fine and will instead holler “ALL DONE!” until we agree to leave.

I know that it broke my heart as we tried different medications to thwart the aggressive behavior that resulted after the abrupt ending to Luke’s school year.

I know that it drives me bonkers when my experience with Luke is compared to raising a toddler. No, it’s not the same. A two year old kicking and screaming – kind of cute. A fifteen year old violently thrashing and screaming, not so cute.

I know that my heart often races as passive guilt is heaped upon my already heavy shoulders when we decline an invitation because of finances or weariness or just plain lack of giddy up.

I know that the gossip whispered about time spent away from my children – frequent getaways in order to be a somewhat sane mother who is able to do this exhausting endeavor day after day, hurts.

I know that I could weep every time I think about Luke’s future, my future, – fearful of what opportunities or resources await or don’t await us after 18.

I know what it’s like to be a caregiver of a teenage son with profound and complex and difficult needs. I know that my voice matters. My vulnerability matters. My experience matters as I speak into this space.

I hope and pray that my voice will be a part of many voices that will create change that is desperately needed in America.

However –

I do not know what it’s like to be black and so I will quiet my voice, quiet my judgmental thoughts, quiet my preconceived ideas and opinions, and I will listen. I will listen to the voices of wisdom who can teach me. I will listen to their experiences and their stories, and I will learn.

This is know.

To learn more about how you can help caregivers please visit www.thelucasproject.org

A Resurrection Only Occurs After A Death.

When Ryan and I met in 2010 we were in a season of death with the passing of our spouses, & this death included a burial of lifelong dreams and expectations.

The next few years we enjoyed a resurrection as our lives merged and birthed new realities: our marriage & family, a simple life in rural America, the birth of a book, a teaching career, a non profit & another child. Lots of growth & beauty.

We now find ourselves back in a season of decay; broken bodies over the past year: Ryan’s, mine, and Luke’s; broken ideals and dreams as we restructure & determine how we’ll proceed, lots of unanswered questions and concerns & the burial of systems that no longer serve us emotionally or spiritually, and we wait because we know. We know because we’ve been here before – this is familiar soil, deep & dark & rich soil where we’ve been planted and now we await our reemergence into the light.

We wait for our resurrection.

And we are confident that it will arrive in due time because that’s how life works.

Everything remains in motion; a continuous movement of death and resurrection, waves upon waves washing away the brokenness and moving what remains to the shore – natural disasters and coronavirus and despair not excluded – it’s all involved, collectively and individually; ashes to beauty and back to ashes again, circular movements until the maestro sweeps his baton for the last time & bows his head in holy reverence, that moment when his beloved creation leans into the finality & releases a labored breath – bursting through the birth canal into an everlasting resurrection.

And until then?

We just keep livin.

WHAT HAPPENS?

I spent an intense morning with Luke at the eye doctor. Honestly, we’ve been frequenting doctor’s offices most days. Yesterday was PT for Ryan my husband, today, eye doctor for Luke, tomorrow and Friday PT for Ryan, Saturday, family doctor for a new wheelchair for Luke…

This is life for special needs families.

I made this appointment months ago – before Ryan had committed to his new surgery date in Feb – before when the original date was Jan 6 but then Luke was still in PICU & so we rearranged our schedules.

Today – 8:30 a.m. Feb 25, 2020. 5 days post op for Luke’s father who usually joins me on these exhausting excursions because it’s hard. But Ryan couldn’t join today with his arm in a brace, and I bribed my oldest daughter Mya to help. Bribed her with the promise of Starbucks. She agreed because that’s the kind of person she is. A lover of people and a lover of hot chocolate.

At 15 years old, Luke hates almost everything out of his ordinary – “GO TO SCHOOL!” was heard loud and clear – repeatedly- during our time spent in the serene waiting room added with the ants in his pants which resulted in a loud “GO WALK!” to the cacophony of chaos as mothers quickly shielded their children from his outstretched, unstable movements which threatened to grab or lick or stumble headfirst into their small toddler’s bosom.

What happens?

I asked myself – my blood pressure rising and heart palpitations quickening with each high pitched scream as Mya and I stared at each other with helpless looks as we tried to wrangle our big man child back into his stroller.

What happens when he becomes too big, and I can no longer physically restrain him?

What happens when he can’t go out in public because he might cause harm to another person?

What happens when my mental stability is hinging on instability?

What happens when his iPad isn’t interesting to him anymore?

What happens if he needs a diaper change and there’s nowhere to change him?

We were able to calm his anxious soul today quite by accident. The nurse played classical music from a contraption with green blinking lights (price tag probably $5000) to get an idea of vision capacity. He loved it and relaxed. I asked if we could keep playing the song on repeat for the remainder of the visit. She agreed & patted his knee “it’s ok buddy, it’ll be ok.” She was looking at me.

It’s okay is what happens. Mercy happens. Compassion happens. Occasionally someone really sees us – that’s what happens. Hot chocolate and strong coffee happens.

Moment by moment as we “just keep livin”

That’s what happens.

A Glimpse – I Choose Hard.

“You and Ryan seem so calm”

A phrase I often heard when Luke was in PICU for almost 4 weeks this past December and into January.  We probably appeared calm because we’ve experienced the worst case scenario. Someone died on our watch in 2010. We’ve waded through the depths of hell and survived; not only survived, but found immense joy on the other side of our grief but that’s not the only reason.

What most people can’t understand is how difficult normal Luke is at 15 years old. Baseline Luke is hard. The restlessness, constant high-pitched screams, puberty, incontinence, the inability to verbalize what he wants or even understand what he desires makes it exhausting to raise this unique individual, but we do it. We go through the motions and thank God for giving us a child who has taught us numerous lessons through his fragile life. But it’s still hard.

As Luke lay quietly sedated in PICU, I was given a glimpse, A glimpse much like Nicholas Cage experienced in the beloved movie, Family Man. A 25 day glimpse of a different life.  Not a life in ICU with beeping machines and lifesaving equipment; instead, a life at home; away from the beeping machines; a life I returned to after Ryan relieved me at the hospital; a life with the other kids. A life where I awoke to the rising of the sun and not to my 15 year old screaming over the baby monitor. A life where I had the freedom to run to the grocery store for milk and not worry about who would stay with Luke; a life where I didn’t have to constantly decipher what my non-verbal child wanted, and a life void of diapers and wheel chairs and walls smeared with food from wherever he ate his last meal.

An easier life. A life of peace or more peace than I was used to. A life of occasional silence. A life without Luke.

Struggle has a way of forcing beauty to the surface. The pink cactus, planted in a dry parched land – sinking its roots deeply into the brittle soil; willing its way to the surface – beyond the menacing thorns the bright pink petals unfold in majestic glory as the soul reaches for the sun.

The hard, holy treasures of life. Dull glittering nuggets that contain what really matters – unearthed through trauma and agonizing moans and breaths that can’t be released and heartache that brings a mama to her knees as she begs God to intervene and heal her son.

I wrestled with the Almighty for days as Luke lay in ICU. Weeping, moaning, begging – my thoughts scary, laced with guilt There’s peace, it’s quiet; my heart isn’t racing, I slept all night…

In the garden, beside the cords and tubes and beeping machines, sweat dripping from my brow, pleading –

Father, grant me the strength to endure the hard, screaming, physically, emotionally, and spiritually draining cup you have asked of me to drink.  Please spare my son. I choose him. I choose the difficult path you have called of me.  I choose life. Give me grace and strength to walk the road. Crucify every desire for prideful control. May I serve the least of these in your kingdom, and may I serve them joyfully.  Yet not my will, but yours be done. Luke 22

This is my road, my journey, and this is the way I must walk. I choose the narrow, parched path where only the pink petals bloom; the path lined with thorns and littered with dull and dirty nuggets – nuggets masking a priceless treasure beneath the smut and the grim and the walls smeared with food. I choose hard and holy.  I choose Luke again and again and again.

Just keep livin.