uncomfortable beauty

My favorite sermon on disability and parenting is by Greg Lucas. His son has profound autism. We share a similar theology and world view. And so, I connect deeply to Greg's raw honesty and one line in particular has played intermittently in my mind over the years.

There is nothing comfortable about disability.

The truth of that simple statement resonates in my heart frequently as we bump against Trevor's particular color of uncomfortable. I'm speaking primary about his intellectual disability, though his medical needs also add complex and messy layers to life.

There is nothing comfortable about Trevor's disability and education.

There is nothing comfortable about Trevor's disability and attempting to maintain a social life.

There is nothing comfortable about Trevor's disability and trying to help him build friendships.

There is nothing comfortable about Trevor's disability and parenting his siblings or building our marriage. 

There is nothing comfortable about Trevor's disability and what should be simply day-by-day life.

And there is certainly nothing comfortable about Trevor's disability and our walk of faith. 

Some time ago, of his own choice, Trevor decided he loves Jesus.

Then, a few months later, after watching a SuperBook episode involving baptism, he began expressing and interest to do the same.

Yesterday, in spite of Jonathan and my own sense of discomfort...

Our uncomfortable thoughts included...

"Does he really understand?"
"What if he has a seizure while he's out there?"
"What if he freaks out because the water is too cold or he feels something slimy and has a complete meltdown and we need to carry him away in the middle of this thing?"
"What if a seizure steals this memory from him and it's like it never happened for him?" 

And all the uncomfortable "what-ifs" that flood the hearts and minds of parents who love a child with profound disability, on any number of stretching occasions. Yesterday, in spite of our discomfort, as Toby put it...

My eyes tears up watching him get baptized.


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!