Man of Sorrows

When your child's health is in crisis, breathing alone requires more energy than you have to give.

Trevor's health is in crisis. 

He had a seizure this week that left us shaking and edgy. Hoping to God that we never see the like again. Praying the Diastat can stay hidden in the cabinet, not sitting there on the counter top taunting our hearts with it's horrible meaning. That prompted his neurologist to prescribe Ativan in addition to everything else. That has his neuro-surgeon emailing reminders his experience with radical brain surgery is heavy on the hope. That boils regrets to the surface, knowing we begged them to spare his motor strip when he was a toddler. Before words, so many beautiful words, and reading skills, and joy of free-limb movement, were known quantities and therefore grieve-ables when lost.

Dear God...

There were so many things I wanted to do this summer. Ghosts of plans undone in my day planner. Friends our hearts wanted to laugh and live beside. Zoo days, beaches, hikes...

all beyond overwhelming to contemplate. Because breathing is all I can do at the moment.

Disability impacts so much more than the body that bravely carries it daily.  Catastrophic epilepsy affects the entire family.  Every fiber of who we are and all the moments we live.  In ways, both direct and indirect, deep and small, it even effects those whose lives touch ours.

I don't always wax so somber in the morning. Lately, though, I fall asleep with a heavy aching in my marrow and wake to more of the same. A thought flitted through my heart the other day and it was this: people of faith, especially, have trouble processing our family. They're frightened by us, I think. Like our sorrow is catchy. That surely our grief speaks to a lack of faith or deep seated unbelief. Oh they've read the book of Job and think they understand. Until they meet a family like ours, whose lives are torn apart by deep, prolonged, grief. Smiles are far more comfortable than sorrows. Tears rained down my cheeks, dripping on to my knees, as I puddled on the cement floor of our basement. Surrounded by laundry and pain. My heart groaning, without words, because there is a pain which flows deeper than language.

It is in that space, I have learned, the peace that passes understanding dwells.

And in that moment, a still, small voice, whispered into my heart...

Jesus...Man of Sorrows...

Such comfort rich words. HE knows my pain.  He walked intimately with sorrow.  I am persuaded when Scripture says He looked out over Jerusalem and was moved, deeply, with compassion, that amongst those homes were families like ours. Living face-to-face with brokenness and clinging to faith. Their pain was not dismissed by Him. He was moved and wept.

Though it may flow counter-intuitively, my sorrow has deepened my Savior. He is more beautiful to me than ever. And the Hope of that which is to come is my heart's deepest longing.

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