when I would not

Some things you should know before reading the linked article:

There is a part of my heart that does not want to post this. It is too intimate. Too raw. To share it myself feels somehow cheap. Yet not to share feels feels like a breach of courage.

More than once I asked the reporter to find another family. Trevor's relapse has brought us to our knees and I'm so very weary. I'm weary of fighting. I'm weary of sharing our story for naught. Over the weekend Trevor had a seizure in the pool, which would last three minutes. When I close my eyes I still see his face plunging beneath the water as I tried to get to him. I still feel the panic of trying to lift his convulsing non-responsive body out of the water. I am soul weary with this battle. This battle which includes more than seizures, as if that alone were not enough. I just want to live and love my son in peace.

I know it's easier to look the other way and pretend these things don't exist. Yet, everywhere I turn, my line of sight is brimming with families like my own, thrust into a world filled with seizures and sorrow. I stand eleven years into this journey. My marrow burns with the knowledge that these families have a life time before them of finding the strength for advocacy as it relates to accessing treatment for their children. This knowledge compels me to speak when I would not.

Though images of our family fill the pages of this particular story, this is not a singular narrative. This is about every family navigating the horrors of catastrophic medical crisis. One day, that family may very well be your own.

Anatomy of a 97,000% drug price hike: One family's fight to save their son


when I'm 18

Peaceful morning swinging often lures the philosophical from Trevor. Earlier this week he was laying back, arms behind his head, while I gently pushed and chatted with him. Somehow as were talking the number 18 was mentioned.

He sighed, "I'm just thinking about me at 18."

"Oh? And what are you thinking?"

"Drive a car."

He craned his head to make eye contact and observed my facial expression, which was probably a mix of sad surprise.

He turned back around and continued, "Yeah, I'd love to drive a car when I'm 18."

At that precise moment we heard a rumble in the sky above.

After a pause he said, "Or an airplane."

What am I going to do with this boy? First a car? Now planes! It's the sweetest thing that he's grown very aware of his "special needs". In fact, if he likes a person, the first thing he wants to share with them is "my special needs". When we meet random strangers in our daily ventures and someone is especially kind, he'll often whisper to me, "I think they must know special needs". One day last week he found my Infantile Spasms Awareness shirt in the bathroom and wore it all day. I'm sure I'm only aware of a fraction of his feelings about his "special needs".

I swear he's a little bit magic. There is untold beauty in the way he embraces his diagnosis but doesn't let it become a barrier to his dreams.

Now, if he could just teach his mom how to do the same!


always with an eye towards the horizon

My heart has been an avalanche this year as Trevor's seizures have re-emerged. While I share my heart fairly openly, there are many layers of which I speak nary a word; some pain is meant to be private.

One source of shareable pain and frustration is the perpetual bumping up against those who cannot seem to grasp the staggering, impetuous nature that is chronic, catastrophic epilepsy. I tend to be good with the words, yet try as I might to apply the most bold, expressive language possible when describing Trevor's seizure disorder and how it impacts our lives every day, every moment, still, there are those who minimize or remain blind to our struggle. Some, even as they bear witness to his seizure disorder with their very own eyes.

Jonathan feels we own a bit of the blame for this. We live quietly and strive for peace "in spite of". In short, we do a damn good job of "holding it together" which allows room for misinterpretation by the undiscerning. They miss the tragedy of the seizure event and focus instead on how we carry on after it's over. We carry on because we have no choice. We carry on because he wants to live. I'll write that in poetry form some day - how so many of the choices we make, the way he inspires us to greater courage and tenacity than is our natural bent, flow from his desire to live. 

Trevor does not have "once in awhile" epilepsy. He has unrelenting, attack him daily, epilepsy. He needs a watchful eye on him, always. Every moment of every day. If we do not have a state-paid caregiver, that responsibility is relegated to his family; most frequently myself or Jonathan. 

He needs constant care because epilepsy is a treacherous, unpredictable villain. If epilepsy were polite enough to tell us when the next seizure will strike and how long it will hold him hostage, oh how different our lives would be. Still sorrow laden, because I have yet to encounter anything personally so tragically heartwrenching as watching him seize, but at least there would be a sense of control, of knowing. But epilepsy is not polite. I say again, epilepsy is treacherous and strikes whenever it pleases. 

This morning, for instance. Before I'd even finished my second cup of coffee, a three minute seizure ravaged him and shredded us. Sleep at least comes for him afterwards, allowing him space to recover. I'm not sure my own heart will ever recover this side of Eternity.

I try to convey the pain, in hopes of leading understanding by the nose. Over the course of the past eleven years, I am continuing to learn that you cannot force enlightenment on anyone. It's a matter of the heart. I only know One who can remold hearts.

There are those who intuitively understand, with whom our hearts may knit; there are those who will encounter the walls of protection we erect to shield our hearts from bitterness when met with ignorance. All the while, we will continue our pilgrimage living as fully, as faithfully, as possible, never without holding unspeakable sorrow in our marrow waiting for the day when all tears will be wiped dry. Always with an eye towards the Horizon.