Painfully numb


I know. It’s an oxymoron to be painfully numb. I understand that. But what you, the gentle reader who doesn’t walk on this journey, might not understand is that parents like me can be experiencing fear, exhaustion, heartache, and a wide range of other very heavy emotions, yet we can simultaneously feel quite numb.

Perhaps it is our mind’s self-defense mechanism attempting to keep us from having that always-too-close of a nervous breakdown.

Perhaps it is our body’s way of allowing us to continue physically caring for our child with serious medical needs and life-limiting illness.

And perhaps, just perhaps, it is our soul’s innate response to protect itself from irreparable damage.

Whatever it is, we continue on despite being, or maybe because of being, painfully numb.

Early this morning, on what happens to be the first day of International Epilepsy Awareness Month (November), I watched my first born son, Brendan Bjorn, have a 10 minute seizure while laying in his bed sleeping. His seizure monitor didn’t alarm because this wasn’t a full body tonic/clonic seizure. This one was “just” his face and head. But because I never fully sleep, I heard an unfamiliar rhythmic sound as his mouth convulsed, making his lips smack together every few seconds. He was grey. He was blueish. His breathing was laboured, off the normal pattern. Checked O2 and it was good. Monitored the clock and before I knew it, his 3 minute rescue medication mark had come. Buccolam (Midazolam) administered. Nothing happened. 4 minutes…5 minutes…6 minutes…O2 is still good, heart rate ok…7 minutes…8 minutes…and finally, finally, his seizure begins to slow down…9 minutes…nearly back to baseline…and then he passed out asleep from the medication which tells his tragically damaged, beautiful brain to stop…rest now, angel…

I stood there at his bedside watching, waiting, monitoring. It was 5am. After about 15 minutes I laid down on the other bed in the room…still watching, listening…and I was painfully numb.

I am still painfully numb.

We had 3 nights of respite and were only home yesterday. He had a large seizure while at the hospice two days ago, followed by a number of very short seizures since. And then this one early this morning. I sit here now at my laptop watching him on the video monitor. I am always watching. I am always listening. For this is what we do, parents on this journey. We are always on high alert, on guard, ready for life to change any second because we know all too well that life damn well can…and does.

Is it no wonder our mind, body and soul try to protect us?




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