“Daddy?”, she whispered from her place of refuge between him and me in the bed, “Will you hold my hand?”
The familiar rustling of his weighted blanket moving. Her contented sigh as his hand enveloped her own. Lightning flashed again, bright blue illuminating their faces for a moment before the darkness returned and thunder shook the house. I laid still, listening to him calm her fears with his knowledge about the things the sky does to make its own light without the sun.
“Have you ever seen a spark in the night when your soft blanket rubs together? That’s what lightning is, except it’s huge! And because light travels faster than sound, we see it before we hear it.”
They went on this way for a long while, him explaining every nuance of the way a storm works, her nuzzling closer to him with each lightning strike and howl of wind. The storm raged on, and she did the thing children do when they are secure in the care of someone they are certain loves them; She fell into peaceful slumber.
These two have a unique bond. She is the one who climbed into bed beside him in the days immediately following his first brain surgery, holding an assortment of objects in her hands she would use to help him re-learn to speak. I used to stand in the doorway and watch the two of them. She would hold up a banana, “Daddy, what’s this?” He would stare at it a long while, then say, “Buhjamaloobahna” or whatever gibberish word would come tumbling out; and, she would laugh. He would smile confusedly, not able to understand why she was laughing, but delighting in the springtime melody of her giggle, nonetheless.
She was 5 years old, then. She is 9, now. She still elicits the same perplexed smile from him every day. She still holds up a banana to him, too, sometimes-a playful salute to what was and an acknowledgement of where he now is.
In the coming weeks, we will begin a series of pre-operative appointments with Jesse. He will, Lord willing, have a surgery in August to place electrodes in his brain to allow for extensive seizure monitoring and brain mapping that will help answer some questions we have about the origins of his seizures and his functionality. This process takes no less than a week and a half. He will be mostly contained to a bed for the duration. His seizure meds will be removed. And then? We’ll see. When the process is done, we will either be facing more brain surgeries, either for tumor removal or for seizure treatment…or a life with medications that are, at best, mood altering for Jesse. I’m not sure whether we are more concerned about the potential of another craniotomy or of being faced with no treatment options beyond medications.
New surgeries and new medications mean new complications. They mean taking steps back in hopes of taking steps forward. They mean a lot more rehabilitative work for Jesse’s already overly-taxed brain and body. But, they also mean a lot more moments with his daughter, taking her hand in his to give security to her fear. They mean a lot more laughs over bananas and a thousand other objects and instances from years now behind us. They mean more moments of lying quietly awake in a midnight storm, listening to his voice speak truth and calm into her fears, lulling her to sleep with the assurance of his presence. I will never grow tired of seeing him love her well, never stop praising Jesus for gracing us with the time we’ve had.
Thank you all for your patience in our silence about this. I know it is difficult to not know what is going on with someone you care about. Sometimes, it is hard to explain what’s going on because the subject matter is vast and complex. Sometimes, we don’t have any information to give. Sometimes, I’m just too tired to put it all into comprehensible words. This time, it’s been a little bit of all of it. As always, we are grateful to each one of you for coming alongside us, for reaching out, for praying us through-especially in the times when we go silent.