When The Calling is Hard

It feels like a thousand years since I’ve written here, but the things I have to say cannot be contained in an Instagram post, so I find myself here again. Writing is how I process, so I suppose this post is more for me than anyone else, but I believe we find ourselves in others’ stories and share so that we won't feel so alone. We hope, just maybe, to find out that while someone else may not have the same story as we do, they are asking the same human questions. I guess that’s why I’m showing up here.

I have four boys; my oldest and youngest were born with rare diseases. It’s part of my life, not all of my life. I’ve never wanted my writing or posts to only revolve around this part of my life because we are so much more than an identity of our illnesses. The world has a hard time with nuance, so it defaults us to some tag that makes it easy for it to classify us. I’ve fought against that by keeping much of Bodey’s story to myself. It could feel like another tragedy in the making, and I don't want to star in that show. And I loathe pity more than anything. Being Bodey’s mom is undoubtedly a massive part of my life, but there’s so much more to me that I want people to see. But I’m wondering if perhaps this time I want to do it differently and share some parts more openly, not to chronicle the gory details, but to share how I’m growing in the process.

I’ve been doing some research for a project and learned this is a thing called the civilian-military divide.  This article suggests this is how it’s defined: “the attitude prevailing on the civilian side of the civil-military divide can be summarized: although we don’t know you, rest assured that we admire you–now please go away.” I’ve reflected that a similar unspoken divide exists between “typical” families and those of us with disabled or sick kids. We are admired, but few want to know what its’ like, much less come along for the ride. So many amazing families and kids hiding in plain sight, but that’s another topic for another day.

Bodey, my handsome nearly eight-year-old, has rare muscular dystrophy called Muscle Eye Brain Disease. It’s a constellation of awful challenges; inability to walk or talk or use his hands usefully, horrible vision with a risk of blindness, seizures, and neurological impairment that makes all of it worse. It’s something you would not wish on your worst enemy. It’s not well researched, horribly underfunded, and not well understood. It’s true that if I had millions of dollars to put toward this disease, people would pay attention. Money talks, and you know the other part of the statement, and it’s accurate as ever in rare diseases. Despite all of this, he is so much more than his diagnosis. He’s funny and loves to cause trouble; he’s smart (he knows everything we are saying); he loves his family, loves music, and is super social.

This week we took Bodey to his retinal specialist because I had concerns about his vision. I was trying to tell myself it wasn’t true, but my intuition screamed at me; he could not see well. He had an eye procedure in early August, and ever since then, things have been off. We learned that the retina in his left eye is partially detached (no attached retina = no vision, and once you lose your retina, you can’t buy one on a shelf somewhere). The back of his right eye is filled with blood, and the doctor cannot see the back of that eye. At best, his vision is low, and we do not know where this will go.

People in public will comment on how beautiful his eyes are; little do they know that his beautiful eyes don’t see well. It’s like a cruel joke leveraged by the most malevolent being. I’ve wrestled through many questions about God and faith and have fallen into a beautiful place of belief, but this is hard. It’s impossible not to ask questions when faced with tough things.

It’s human nature for us to make bargains. I did it with Ethan. There were things I told God, “Don’t make him go through that.” Like I’ll walk anyplace but there…and they all came to pass. We walked in all those places. I guess I’m not a very good learner because my bargain was over eyesight this time – you can take the other stuff, but not that. Not his ability to see our faces, not that.

But I find myself here once again. In this place, I have begged not to be. But this time, it’s a bit different because I know there is another side to it all. I know all about facing my fears, walking right up to them, and staring them down. I know that we will adapt and learn to adjust to whatever comes. I also know that it’s essential to give ourselves time to mourn. And that’s where I find myself today—mourning my son’s circumstances and how they affect him and my family—grieving our future and present. I’m fighting back jealousy when I look at other families. I find myself bargaining for alternatives. As if I have any control at all.

This is a challenging life assignment. It’s not one I would concoct in my brain if I could. But it’s my assignment, nonetheless. Earth is a school, and I’m a student. I know that goodness comes from broken places. I know wisdom arises from the depths, and I know that this adventure I’m on takes me to unknown places and sits me beside incredible people. But today is hard, and I wish I could change it all. Once again, I am humbled by life. I bow my head to what is and ask for grace for what is to come. I trust a story I cannot see. Somehow this last statement feels more apropos than ever.

Last night I chatted with my friend Bridgett who has faithfully walked with me through my entire story, and she matter-of-factly said to me, “okay, let's just take the next step.” She didn’t project good or bad; she injected hope and honesty. And that’s what we do. We take the next step. We put our faces right up in the mess of it all. We don’t look away or pretend it’s not as bad as it is, fantasize about how good things will be, or catastrophize how bad they will be. We are here now. We ask for grace for the moment. We stay rooted in the present. We know our strength, our adversary, and our ability to weather and rise.

I know the holiness that exists in presence. In sitting at the crossroads of hope and despair. I have found myself here so many times. It’s a beautiful and hard space to sit; still, here I am.

I told Bodey yesterday that even if he could not see physically, we’d learn to see with our third eye, our spiritual eyes, that always see clearly. And that is faith. The faith that I somehow try to hold onto. And so, we continue moving forward.

Once again. God, give us grace for this next leg of our journey.