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The Stories I Tell Myself

February is Rare Disease month. I don’t currently have any big plans to write about rare disease this year (although that could change) but it’s part of our lives. Our oldest son has a rare disease called Isovaleric Acidemia. It almost killed him when he was born and we were unaware that IVA existed. He carries those repercussions in his body to this day and he will his entire life.

{The short version of IVA is that your body has a defective, though present, enzyme that should function when breaking down protein, specifically the essential amino acid leucine (essential means it’s in all protein). Because the enzyme doesn’t function, instead of leucine being broken down and continuing to be metabolized, it gets stuck and produces isovaleric acid and ammonia. IVA is managed by a low-protein diet and a medical formula, among other differing things.}

This pandemic has been especially trying for him. He is not more likely to get sick but being sick is more complicated for him. We have ended up in the emergency room to get fluids over a stomach bug more than a few times. A fever of 100.4 slashes his daily protein intake because your body breaks down your own protein when you have a fever. We pay for AirEvac because our local hospital won’t admit him and/also because he needs more specialized care at a children’s hospital when he is sick.

Since being sick is much more complicated for him, we have taken extensive quarantine measures during the pandemic. We’re homeschooling. We see only a small handful of people. My husband has been working from home. We’ve done it outside, or masked, or on zoom, or not at all. While I’m grateful for all the good our family has still been experiencing, it’s been a long year.

In a virtual appointment a few weeks ago, his metabolic doctor stated that they are hoping to have a vaccine for ages 12-18 in the third or fourth quarter of this year. My heart sank, even though the news was not unanticipated, because it’s already been a long year and it looks as if little will change. He won’t even be 12 when the vaccine releases.

As a mother and a woman, there is always two sides of the story. The side where I’m dealing with myself and the side where I’m dealing with my family. I’ve learned that to care for my family well, I cannot skip caring for myself. And even though the year often feels like a long repeat of Groundhog’s Day, I’ve been leaning into a few other stories.

Joseph, yes, the one from Genesis, has been a close friend to me. Not because he (rather stupidly, if you ask me) kept telling his brothers about dreams where everyone bowed down to him. And not because he becomes second-in-command in Egypt years later either. It’s Joseph in prison that lingers in my mind. I don’t think I’m in prison, don’t get me wrong. But I am restricted. My world has grown small, through no fault of my own, and I get to choose a response.

My imagination, my love for stories, allows me to sit and wonder how often Joseph was despondent in prison. Lying on his bed (cot? pallet? flea-infested blanket?) questioning why God forgot him. Screaming curses at his brothers or Potiphar’s wife. But however often he found himself there, he didn’t stay there. Even in Potiphar’s house, the Lord was with Joseph. Joseph responded to that knowledge with his life; that’s why he fled from Potiphar’s wife. And when Joseph finds himself in prison, that same song is whispered, “But the Lord was with Joseph” (Genesis 39:21-23).

Because the Lord was with Joseph, he ran the whole prison. He was responsible for what was entrusted to his care. That’s as far as I can take the comparison since I’ve not started interpreting dreams but the story sticks. Will I be responsible for what is entrusted to my care even if this isn’t my first choice of circumstances?

My other option is to scorn it and that’s easy to do. This work is tiny. Its scope is small. No one sees it. This doesn’t change the world. But doesn’t it? None of us actually change the entire world; we change the world for someone. There are someones right here. I get to decide how I will use these days. Will I be forged into someone that resembles Jesus more by the work of the Spirit and my participation or will I waste this because it wasn’t what I wanted?

This is a common theme in the story of God’s people. Moses in the desert. Hannah waiting on a child. So often we are given tiny glimpses of days but these people lived whole lives, becoming someone, living in fellowship with God. Huldah. Micah. Amos. Deborah. Elizabeth. Phoebe. Barnabas. I am not alone here. There’s a great cloud of witnesses, whispering their similar stories, urging me on.

None of this means ignoring reality. Recognizing the weight of my own life and its difficulties is what allows me to truly be present with others in their grief. Sharing my own pain with friends releases me from some of that burden. I am a get-the-help-you-need kind of woman, not a pretend-everything-is-ok person. And yet, I find myself in a story, at a crossroads.

These decisions have implications for more than my own life. As a mom, as a writer, as someone who shows up on Instagram occasionally, I help shape the world for the people around me. I’m reminded of a Shel Silverstein poem that says,

“Sandra’s seen a leprechaun,
Eddie touched a troll,
Laurie danced with witches once,
Charlie found some goblins’ gold.
Donald heard a mermaid sing,
Susy spied an elf,
But all the magic I have known
I’ve had to make myself.”

I get to make “magic” with these days. I’m the one who goes tramping outside in the snow with my boys and builds tents in the living room. We read cuddled under blankets and swing from playing MarioKart to cleaning up the house. We play music and watch good movies. We read books about fascinating people and traipse into nature as often as possible. I show up on the internet with metaphors and stories hoping we can relearn how to see the world. I relentlessly insist that God is here, present, in all these daily movings and we can carry our joys and sorrows together.

However long until it’s safe for Micah to move back into the world, I want the tenacity to remember a story so that I can truly live, and hopefully in that also remind others what life is.






Photo by Stephanie Harvey on Unsplash

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