Wednesday, August 2, 2017

poignant memories

He had a seizure this morning that required pulling over on the highway enroute to VBS.



Bristel was in the back of the van with him, on the verge of hysterics, crying, "Mom, he doesn't know me! He doesn't know I'm here! I don't know what to do!"



Thank God Tobin was with me. Trevor had guilt tripped his big brother into coming as his helper today. I saw him out of the corner of my eye; with a maturity beyond his years, he was reaching for the Diastat.



I was trying to stay calm and clinical. There wasn't a great option for pulling over, but I had to stop, and now. He had already been seizing for over a minute. Seeing how narrow the emergency lane was I began calculating how I would climb over the middle console and what we'd need to do to get his body in position to administer the rescue meds.



Relief washed over us when we could see the seizure relenting before the 3 minute marker; before meds became necessary. As the seizure's grip weakened, he came back to us and was able to articulate that it was almost over. When it was completely finished he told us so and how he knew because, "me not shaking anymore." Ironic, that he shakes during his seizure, the rest of us after. I think he was a little annoyed when we asked him a dozen times if he was okay.



Every time he has a seizure, we feel the Grim Reaper in the room with us. We brush up against his mortality and walk with death daily. You might know that *one* person who has lived a long life in spite of seizures, but trust me when I say that is not the norm. I am not being dramatic. The bigger the seizure, the warmer the breath of Death on our necks.



Unlike the rest of us, Trevor didn't seem phased aside from his typical post-ictal yawning. He just asked for his iPad and binky and said, "Ok". As if to say, "Get over it, people. Let's move!" I know Toby and I were secretly hoping he wouldn't want to attend VBS. No such luck. This child is incredibly resilient.



He still wanted to go.






This picture was taken during the Bible story time and is especially poignant for me. Trevor can't follow long, wordy lessons. While all the other children listened along, he quietly grabbed a hymnal and flipped through it. I noticed at one point he'd paused and was looking my way. His eyes were sparkling. His finger pointing. He was showing me that he'd found a hymn he knows. Then another. And another. Each time he read words he knew brought him a little more joy. It was precious.



I sat beside him, hugging him with my eyes and heart, and weeping inside because each seizure brings us closer to moving forward with completing his hemispherectomy. This picture and that moment are poignant for me because I know that if we are forced into this decision he will lose all the reading skills we've worked so hard to gain. This moment will be a sweet memory of what was. I know that perhaps, with much therapy and work, he might regain some of these skills, but it doesn't make the perceived loss less painful. This decision is not easier the second time around. Indeed, I'm finding it much harder and heavier.



But then I feel my knees shake again when I remember being pulled on the side of the road this morning...







 

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