This morning as I was preparing to watch Trevy’s K class perform their end of the year celebration, a memory swirled in uninvited. In my mind I was swept back nearly five years ago, when a young woman asked if she could meet with us. We invited her to our home where she proceeded to apologize for gossiping about us and then justify why she did. She was disappointed in Jonathan's leadership, see. So the gossip was of course warranted. I’m still not quite sure why she ever tagged the I’m sorry on there. Clearly, she wasn’t.
When we reminded her that just two months prior Trevor had survived having half his brain she removed...her response was...
It's been two months! Aren't you over it?
I'm not sharing this to beat up on her. Okay...so maybe a little. Wink.
But also, this morning as I was preparing my heart to watch Trevor perform his K celebration play - I knew that he would seize. Stress is a trigger for him. And standing in front of others is a stressor. I knew that the seizures would mostly be small and miss-able. A piece of me hoped that maybe the Holy Basil would do it’s thing and I’d be pleasantly surprised.
Yet as I sat in the audience...I did not miss them. I watched his body jerk and quiver. I observed his right arm and leg lose their coordination & purpose as the seizures clearly marked their territory in his head. I watched him lip smack and look lost. His sister leaned against my arm. So beautiful with her sun kissed glow and dripping sweetness. In a hushed whisper making sure I saw too. I nodded, weary and grieved that she has to feel this. Wordless heaviness. My heart clenched as he yawned. The seizures raging inside taking a toll on his little body. I watched him stare into the distance. Almost as if he was trying to remember his lines. Only he wasn't. He knows every word to every song. When the monster in his brain isn't warring against him. I have no idea what other parents witnessed. I'm sure they were only noticing their own children just as I was fixated on mine. To me, it was like watching an epic battle unfolding. The hero, an adorable amazing little boy. The villain – epilepsy. I saw that little boy smiling with joy when the fog lifted for a second of victory here and there and lost when the fog descended again. I felt my shoulders sagging as if the weight of his war was tangibly pressing down on me too. Indeed, it was. And I purposely pushed them back up and forced myself to smile big at him and sign I love you - in case he could see me through the fog. I wanted him to know that mommy was there with him. That he was NOT alone. And that I was cheering for him. And that I saw. I saw everything. I knew. I deeply believe he knows that. He may not understand it fully…but I believe he knows that I am his chief advocate. I willed my energy to vibrate off my heart into his. To infuse him with courage and love and hope and endurance. That he might feel and know to his very bones how proud I am of him.
This boy.
He IS a warrior. And he IS one of my heroes.
I had thought recently that had she had that same conversation with us now. That girls from five years ago. If she blasted us today rather than then…I thought…well maybe she'd have a point. A leg to stand on.
Today reminded me that nearly five years later...I'm still not "over it". Because I'll never get over him.
…danielle
Comments
Your post is so unique in that it really lets you inside the head of all of us, in a lot of moments we all share, that combination of dread and hope, of joy and sorrow that get mixed up as we sit next to other parents that will, and this isn't meant as an insult to them, can never know what it is like to feel what we do during what should be your typical event on a typical day at your typical, everyday average American whatever.
Lemme ask you something. I've often wondered if it happens to you, too. When you write something, and you want to emphasize it, you capitalize it, that's what we DO, yeah?
So, when you want to emphasize the word is, and you capitalize it, do you ever feel that sting when you capitalize it, even though it isn't actually the same words and you aren't referring to the same thing, and now you are dealing with a whole new set of epilepsy variables that suck, but you know that's what kind of started this whole roller coaster.
I'm almost afraid to ask the question, because I don't want to put it into your mind if it wasn't there before, and if I just did? I forever owe you. But it never leaves my head, and Bennett hasn't seized a day since the day after surgery but all his other issues sort of come from that one summer of the you know what's and the you know what, but the two words are still in there four years later, and their initials are still deeply burned into my head. Can't explain it.
Just wonderin'.
...d