I’m not sad, I’m not mad, I’m just recalibrating.

I’m not sad, I’m not mad, I’m just recalibrating.

Walking through the halls of Seattle Children’s Hospital felt achingly familiar, a routine that is simply a part of our family's lives. Loch sat in his wheelchair while I pushed, he was bored and unstimulated. After checking in for his third appointment of the week, I settled among other caregivers. We all have different stories, but are bonded by the feelings of desperation that we have all at one point experienced. Loch asked to go to the fish tank, and I nodded. His John Wayne gait is unsteady and unbalanced. He looks out of control, but only deceives onlookers. Both he and I know just how in control his is.

After about fifty steps, he reached the tank and sidestepped out of my sight. I fought the maternal urge to run over, trusting he wouldn’t wander. Every few minutes, I caught a distorted glimpse of him through the tank’s glass. The fish tank was a constant fixture of our visits here as is the blue bench that sits beside it. He always remembers the fish tank, I cannot forget the blue bench.

On January 31, 2021, in the heart of the pandemic, Lochlan and I sat the

re waiting for emergency brain surgery. Alone because he couldn't have any more visitors. On that day, I didn’t arrive at the hospital knowing he’d leave with new hardware implanted in his brain’s ventricles. Just as I didn’t expect to deliver one-pound twin boys at 24 weeks or learn that, statistically, they would have disabilities. I hadn’t planned for heart surgery, brain surgeries, or countless evaluations where I’d be told how far behind my children were developmentally. In motherhood, there are many things that we can plan for. In medical motherhood, the only plan we have is to expect our plan to change.

Today proves no different. Lochlan’s name is called, and we head back to meet the therapists and neurosurgeon. He walks, and I push his wheelchair, listening as they explain a possible spinal surgery that might ease his body’s tightness. I anticipated a straightforward answer—a green light or a red one. But the response was layered, "this surgery might help," is how I understood it. The surgery would also require intense rehabilitation and a month as an inpatient. Low risk, the neurosurgeon reassures me, especially compared to the operations he handles daily. Yet for me, the stakes feel anything but low. I leave the hospital without a solution, only a decision weighing heavily on me for Lochlan’s future. I wish his 20-year-old self could make it for me, but neither he at seven nor I can truly know if the juice is worth the squeeze.

My emotional triggers and post traumatic response run high as we head home that evening. The adrenaline sustains me until bedtime, but I know the crash is coming, as it always does after medical news. I’ll feel the ache, the exhaustion. I feel the gratitude for all we have, I feel the grief for all we did not choose. . I loathe that when most families are trying to juggle soccer practice, we are trying to juggle therapy and neurosurgery appointments.

As the days pass, clarity emerges, an understanding I hadn’t yet grasped. I found a word that captures why medical motherhood is uniquely challenging: recalibration. It’s not difficult because of the medical challenges alone or because I wish my son were different. I don't. I'm not sad. I'm not mad. I'm just recalibrating and hold my breath until I have to rebalibrate again.

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3 comments

My heart hurts for you. You will get through this. You are strong. Prayers for you 🙏😇❤️

Paula

You are the strongest warrior I have ever met!! Know that you have unlimited love and support always.

Merrie

I just love you ❤️

Jeanine Sbisa

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