It is not good, but it is well

Several years (and a battery of tests that nearly killed me) ago, I was diagnosed with a string of autonomic nervous system disorders. After months of attempting to regulate my heart rate and blood pressure with medications, which resulted in more near death experiences of allergic reactions and other side effects, my cardiologist recommended I,... Continue Reading →

About all of that seizure testing we did…

I woke you up two nights ago, accidentally. I tripped in the darkness coming out of the bathtub and into the door frame. You startled and your body went rigid with seizure, caused by abrupt awake-ness from the dream taunting you into unrest. Your eyes opened unnaturally wide, your right pupil hyper-dilated, encompassing the blue... Continue Reading →

Before brain cancer stole him away

He was dying the day a butterfly alighted on his shoulder and stayed for several minutes. He was dying as he twirled his small daughter around on the dance floor during the reception of a beloved unbiological sister (a term my family uses to describe two of our siblings the good Lord gave us through... Continue Reading →

Four Years of Brain Cancer

I am not what some would call, an ambitious person. The things I have done in this life I have done simply because they were the next thing which presented itself to me that needed doing. I am ambling about, sometimes forward, often pausing to look left and right until I am dizzy, when I... Continue Reading →

She and him

“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... Continue Reading →

Sorrow-wrecking, Hallelujah words

I snapped this picture moments after Jesse sat upright in the ER and scooted to the end of the bed in an attempt to stand, feisty from the medications he was given to stop the seizures. I stared at it awhile, perplexed by the vibrant colors of the photograph. That’s when I realized it’s a... Continue Reading →

What we do and don’t know

 I took his battered hand in mine as we walked from hospital to parking garage this afternoon. He’s unsteady on his feet. Still heavily medicated. Staying on high doses of nausea meds from a stomach that hasn’t balanced out from the trauma of two days ago. But he’s gaining ground. He’s regained his dexterity, playing... Continue Reading →

The shredded remains

I walked into the laundry room this morning with a Walmart bag of Jesse’s sweat drenched, vomit covered clothing to give them a thorough washing. I remember seeing a ragged edge on his shirt when I scooped it from the hospital floor last night and shoved it into the crinkly plastic. As I pulled the... Continue Reading →

What a week…

  For those of you who follow our story on social media, the next few blog posts will be things you have likely already seen on facebook or instagram. I realize that many of you only follow our story through this blog, though, and want to give everyone the most up-to-date information on Jesse. I... Continue Reading →

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