Last night my son Brendan Bjorn had a massive seizure. It won’t be the last seizure. And I know that, quite frankly, because he made it through this one. He’s still with us this morning. That is the cold, hard truth we face on a daily basis. That is the life with a fragile angel who has a life limiting illness and intractable epilepsy. This seizure wasn’t “The One” that we all dread. It didn’t take him. But the odds are high that one day, THAT ONE, will.
Last night I watched my son’s innocent, stiff, beautiful body convulse out of control. I stood by his side, holding him, touching him, stroking his hair, while I could do nothing else except attempt to comfort him by telling him “I’m right here, Brendan, hang on buddy, Mommy is right here.” My partner watched on, keeping an eye on his watch while he counted down the time at my request.
One minute. Two minutes. Three minutes.
And by the way, 30 seconds of watching your precious child having a grand mal seizure feels like a lifetime. Three minutes is utterly torturous. Not breathing…turning blue…arms and legs and head and eyes all convulsing in a cruel rhythm.
Three minutes is the red zone for my son. That’s the time limit for going without a rescue med, specifically diazepam. It is to stop the brain activity causing the seizure. It is to basically knock him out so he can rest. It can also slow or stop respirations, and that is always a risk, especially when he’s not breathing during the seizure.
At this point, having been on the seizure part of this journey with Brendan since he was 3 years old, I handle them like a pro (or so I’d like to think): I remain calm, comfort him, keep him safe, monitor his O2 sat rate and heart rate, prepare the rescue med, administer the rescue med…then watch and wait.
After a seizure as violent as the one he had last night, the body trembles and shakes for some time, as if shivering from the cold though it isn’t cold. I held him in my arms as best I could leaning over his bed. Finally, he fell asleep. The shaking stopped. His O2 sat came back into the high 90s after being in the 70s during the seizure. He was OK. For now, he was OK.
I double checked everything. Triple checked. And then I said goodnight to him. Oh yes, and I also took his photo. It’s the one you see here below. I always do. Why is that? Because I never know if it will be the last one I get to take of him alive. That is also the cold, hard truth of it.
I went to bed, now well after midnight. And while I could take some solace in knowing the seizure monitor on his bed works – because that is what alerted me to him seizing in the first place – and that I have an audio/video monitor at my bedside, still I know those are not fool-proof ways of keeping him safe, keeping him alive. Exhausted, I resigned myself that there was nothing more I could do, and I went to bed.
And then it all hits, as it always does. My emotions, free to be felt after being set aside during the seizure to allow me to do what I need to in order to save my son. The tears came uncontrollable and from a place in my soul that aches endlessly. Endlessly because while this wasn’t the seizure that took him, I know exactly just how close it was…and that it will one day happen again – another massive seizure where all I can do is wait, watch, comfort, time it, administer the rescue med, and hope that it isn’t “the one” this next time.
And that is what we do, all of us on this particular path. With each episode like last night’s was for my Brendan Bjorn, we parents lose a part of ourselves as reality smacks us hard across the face and rips at our heart where we are most vulnerable: the place where the love for our children lies.
Today, it is another day. He still sleeps, his body completely worn out from the trauma of last night and the medication that had to be given to stop that trauma still having affect. He sleeps, my loving angel sleeps, and I continue to wait and watch over him, because it won’t be the last one.