A Holy Shift

I descended the stairs, immediately irritated by what was awaiting me with each scream originating from my 15-year-old son. Great, I muttered as the uninvited stench rose to greet my nose. Luke, my son with profound special needs, required yet another diaper change – a chore that was becoming increasingly able to grate my very last nerve over the past few weeks as his father recovered from shoulder surgery – a recovery period that did not allow for diaper changes.

I opened the door slightly and held my breath. The third of the day so far. My least favorite job in the whole world.

I did what was necessary – cleaned my big 15-year-old man child, and as I prepared to leave, he reached for my face, met my eyes and sang in his sweet jumbled way,

Oh God you are my God, and I will ever praise you.

Continue reading “A Holy Shift”

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.

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.

 

 

 

 

See Me Too – A Caregiver’s Plea

Dear mama with normal children,

Normal? Typical?
What’s politically correct you might wonder?
As do I and –
What is normal anyway?
Honestly, I’m not sure because I’m tired.
And I don’t spend my free time on political jargon
And I definitely don’t sleep well
And most of my waking hours I’m caring for someone else
Or finding resources that will hopefully make our life a little bit easier someday.
Someday – a day that feels more and more like a unicorn lately.
You see, I’m a special needs mama to a 15 year old son.
And no, it’s not politically correct to call myself that
Because I am more than just special needs
Or so they say
But am I?
Because a pretty high percentage of my life revolves around my child and what we can or can’t do because of his limitations.
I often see you and your beautiful typical functioning children out and about in the world, and I’m envious.
Yes, I said that out loud.
And I’m not supposed to say those words because I have my miracle baby.
The child the experts said would never live
So there’s always guilt attached
To my envy. Continue reading “See Me Too – A Caregiver’s Plea”