Against the backdrop of the bright yellow walls, the doctor hit the metal tuning fork against her palm, holding it up with the precision of a concert pianist. Gently, she touched it to the area where his bone is visible under the skin at the wrist.
“How about here?”, she watched his face as she asked the question again.
“Nope,” he answered confidently, despite the way everyone in the room stared at him rather incredulously.
“Chase, are you messing around? Now is the time to be serious.” I couldn’t help wanting to slip into a place that controlled the outcomes. It felt safer.
The tuning fork touched again and again and the room grew more quiet as the Chase’s voice responded in the negative each time. And by the end of the exam, he had felt the vibration in only two places… his shoulder, and his jaw.
“We’ve always known there were diminished reflexes,” the doctor explained as she pocketed the tuning fork. The smile she always has for Chase was also pocketed, her face the face medical providers almost always wear when it’s time to talk about hard things.
The truth is that proof of Chase’s advancing neuropathy hardly comes as a surprise. Every parent who has a child like Chase has to – before the start of treatment – sign their lives away on pieces of information like “may cause neuropathy”.
I remember sitting in his hospital room the first time a chemo infused, as instructed by his staff, checking repeatedly for tingling in his fingers and toes – a sign that the then brand-new-to-him-chemo would have been causing instant and irreversible neuropathy.
He seemed to escape the instant and irreversible at the time.
But he didn’t really escape at all.
And dear ones, he was so proud of himself for passing the test without feeling the tuning fork on his arms and legs.
“It’s because I’m a tough guy, Mom.”
I didn’t have the heart to tell my beautifully tough guy that he was supposed to feel it.
We signed our lives away knowing these things could happen, but the truth is that sometimes watching them unfold in a room, watching the doctors repeat the tests and gauge every reaction feels like we’re seeing damage for the very first time ever. It feels like a slap across the face and an indrawn breath and a sharp reminder that nothing is ever really going to be okay ever again.
Sitting in the lounge area overlooking the lake and the sunrise, I pick up my phone with a deep breath, pulling up the advent reading for the day because “why not?” What else is there to do in the early morning wait at a children’s hospital the week before Christmas?
“Sing for joy, O heavens, and exult, O earth; break forth, O mountains, into singing! For the Lord has comforted his people and will have compassion on his afflicted.” [Isaiah 49:13
I do not want to sing for joy. I can’t see joy right now.
Across the open park square far below, the rising sun paints the lake bright and hits the glass face of an apartment building, projecting rays of light into the blue shade of the space I sit.
How I long for the comfort and compassion promised in that Isaiah advent verse! Hospital days like this one leave me feeling like a desert. My eyes ache and I feel hollowed out.
But there is a drop… not a flood, but a single drop: the gentle reminder sitting on the open Bible app on my phone that Jesus came for us in compassion.
I take a breath into this knowing in my head, and still grieving in my heart. It’s a duality of space like knowing Chase is damaged, and feeling the weight of that damage like brand new.
There are no surprises here…
Chase is not okay.
“…and will have compassion on his afflicted.”
How can those two coexist? …the pain and compassion. Wouldn’t compassion in this scenario automatically mean cessation of pain?
I don’t think that’s always how God works, dear ones. Sometimes…truly…more often than not… the hard thing; the grief, isn’t erased. You know this and probably feel the truth of it daily just like I do. There are ever so many life things that don’t and won’t leave us completely until we see his face. It isn’t abandonment. It isn’t carelessness or forgetfulness or because he doesn’t love us. It’s because he’s doing something in our pain that we can’t see yet.
I believe this with my whole heart. And real talk… it still hurts, doesn’t it?
But in compassion, he sits with us in our pain. The antidote isn’t erasure of the pain (though with my whole heart and soul, I wish it was)… it’s presence.
Emmanuel… God with us.
We are not alone.
Even when we can’t see.
Even when there seem to be no answers.
Even when the old hurts feel like they’re unfolding for the very first time.
He is with us.
Moment by moment.
