He brought it to me, tangled up in a pile of other discarded clothing. I saw the sleeve peeking out from beneath an outgrown child’s shirt, the happy, bright orchid standing out in contrast to the white and grey surrounding it. My soul choked on a memory I thought I had discarded alongside the purple shirt now in my husband’s arms. Somehow, the wrinkled fabric found its way back into my home, into my presence, and it was May again. Jesse’s sweaty, bloodied head is cradled in my arm. Our children are running toward me on the grassy expanse in front of where their daddy lay seizing, fear of the coming known etched into the smooth skin of their young faces. I am telling them God is good. He is still on His throne. I am hearing my voice say we have always known Daddy was going to die sooner than not. I am following an ambulance through the dark and rain, singing in broken voice to the fear inside me “What can take away my hallelujah?”. I am arguing with EMTs, sitting alone in an ER waiting room as medical personnel tell me Jesse is unresponsive to stimuli, that they have done what they can do. They are cleaning him up so I can see him before they put him on a ventilator so our children can spend time with him still breathing and warm. I am staring at the vacant bright blue eyes with amber rings of my love-struck youth, the ones once so full of vibrant life. I am taking his cold hand. Kissing his pale cheek. Watching the monitors blink out the weakened state of his fragile body.
The current day, living Jesse sees the expression of my face, and I tell him to throw the shirt away. He asks why. I tell him of its weight. He apologizes, and leaves with it. I sit on the couch, remembering every breath of life we have lived out since an hour and fifteen minutes of tonic-clonic seizures left Jesse physically breathless, nearly lifeless, and left me emotionally in the same place. Late last night, I picked up my phone and walked out to the small trash can Jesse keeps in his garage work area. I opened the lid and, as expected, the spring shirt I wore one May lay barely visible, having been carefully covered by other items. I pulled it out, clutched it in my hand, pressed the soft fabric briefly against my chest, then let it fall back atop the place it had been buried. I took the photo you see at the top of this post, shoved the shirt back into the depths, beneath a dozen fresher memories, and walked inside to Jesse’s dancing eyes looking inquisitively at me.
If you follow me on social media, you know a bit more about the wreckage of the last several months, though, even there, the words have been brief and broadly spaced. I have needed the safety of solitude to process and grieve and to simply survive the many changes and challenges we have been living out. But, I have been told rather firmly by the Lord that the time has come to start telling this story again, hesitant though I am to spend much time in this fleeting life focusing on the worst of our moments. I do not know what this will look like in this space, or in any space for that matter, but I suspect it will look like a lot of work, on my end. My intention is a simple one: I will tell the story of May to December, of Spring to Winter, in however many (or few) words it takes. You will see pictures and scribblings of writing I have done in no particular order. I am too prone to follow the way the wind blows to be too terribly orderly about this. Besides, our story is not a linear one, but a tangled thread, knotted up and stitched into the stories of a lot of you. I could not tell it in a stiff line anymore than I could make a simple pillowcase out of an intricate quilt. The story will be what it is, in the end, not a thing more or less than that. Why now?, you may be wondering. Well…
A friend stood at my kitchen island with me, recently. We were eating delicious cheese and laughing and talking about life, when she stopped speaking and stood up straight. She looked at me, tears pooling in her eyes.
“The world needs your words, friend.”
“How do you know that?”, I asked.
“Because I need them.”, she replied.
And I believed her.
So, here I am again, staring at an opened notebook full of my late night letter stringing, letting my fingers do the work of putting my memories into solid form on a computer keyboard. Of course, she is not the only one who has told me over the past several months (okay, years) that I need to tell my story-the whole thing. Many of you have told me the world needs my perspective written out in my words (Not because I am anything unique or exceptional, mind you. We all have a story to tell). I honestly don’t know why y’all say this to me, but I am grateful for your persistent pursuit of each new chapter in our lives. Writing is healing for me, more of a must than a want, and I am an expert avoider of it. It is, most often, the questions asked by one of you which force me to sit down and do what I know I need most to do in order to keep surviving this mayhem: Write it all down. For that, I thank you. I have needed YOUR words, your stories, your encouragement, your faithful reminding that God is who I know Him to be: the Good and Faithful King who sits, still and always, on His throne. More is to come, dearest, but for the moment, because I know the angst of a life in wait of what comes next, you can pray for two things:
-For me to faithfully get all of these stories out of my head and into printed form
-For a much needed FDA approval that is keeping us from accessing our only and last option for any kind of seizure control for Jesse (details on this part soon)
We love you all so.