“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.