Rare disease stole my life (and gave me a new one)

After having three children in three years,

I thought my life’s plan was pretty well outlined. And I was pretty happy about it (in between the diapers, screaming toddlers, and late night laundry).

My husband, my three boys (and maybe, just one more…), and I would grow up, laughing and running, teaching and learning. Living life.

The problem with that was – I wanted to live the life I expected.

Two years later, I was driving more than 90 miles an hour. Medians, guardrails, they flashed by me one after another. I didn’t really notice, other than the split second thought that if I ran into one, the pain would stop. The pain that was literally ripping my heart out of my chest.

My child was going to die. A rare disease called Hunter Syndrome would take his life. It might as well take mine.

The thought didn’t sprout legs and grow. I didn’t become best friends with Self Pity, but I did sit at her table quite often, lingering over a glass of woe is me and a heaping plate of hopelessness.

She was a bitter companion.

Sometimes other friends would join us, friends also affected by rare diseases and special needs, stolen hope and impending loss. With children normal one day, then dying the next.

We shared a commonality – our lives were stolen. The lives we thought we would have.

We didn’t necessarily agree about who had stolen it. Some thought God was the criminal. Others thought Fate. Still others thought it was the pesticides or the additives.

It didn’t really matter. Blame wouldn’t change it. But Self Pity was more than happy to talk about all the possibilities of whose fault it was.

But as we sat there, sometimes we’d glance at those milling about, not joining us at our buffet with Self Pity. Some had sat with us for a time and now had moved on.

They were different. Their personalities were different. Their lives were different.

Eventually, we outgrew the table. We had to intentionally extricate ourselves from conversations with Self Pity. We stood up. We looked at our new lives.

And decided to live them.

Yes, they looked different. They might have greater highs and deeper lows. But they were ours.

Part of this changed life was the joy and comfort I found in writing. I never considered myself a writer, but it’s funny how reflection happens over time.

I’ve been writing all my life. From “books” in middle school, to essays in high school, papers in college and briefs in law school, briefs and legal opinions as a law clerk, teaching legal writing as a lawyer, and writing music for my children and as part of momentous (both happy and traumatic) times in my life.

Except for the music, all that writing had been about someone else.

Case’s diagnosis in 2009 and his enrollment in the clinical trial in 2010 generated such emotions that I felt I would burst if I didn’t write about it. Much of it was just informative – how to get a wheelchair approved, what is a sensory diet, how was the trial going. Although I shared our story and my perspective, most of the very personal, emotionally raw words still sat in drafts, read only by me.

Maybe that’s how it should be, I’ve always thought.

But maybe not.

In the last year, I’ve acknowledged something that I feared to say before. Because when we say we love something, we are at the whim of it being stolen. When we say we want something, we are at the whim of our own illusion. When we declare a goal, we are subject to the fears of failure and criticism, accusations of exhibitionism and narcissism. I hate -isms.

So here we go.

I love to write. I love to blog. I love to write music. I love to create things that express the emotions I cannot otherwise express, and I hope, that reflect emotions others share but find difficulty expressing themselves.

I love to bring joy to others with what I write. Or bring tears because the reader can relate. Or laughter because our life might seem so incredibly ridiculous at times.

I once was a lawyer. Or at least my business card said so.

I’ll always be an advocate. My child needs it to be so.

But I’m now a writer too.

Maybe you’re saying, “But Melissa, I’ve thought you’ve been writing for the last five years?”

True.

But writing was always an adjunct to everything else. A legal writer. A rare disease writer.

Of course, all of that will still be part of my writing. And my advocacy work goes hand in hand.

But this new space is a platform for all of my writing. Whether it’s about my faith, Hunter Syndrome, writing about writing (so meta), or songwriting. You will find it here.

Maybe it will be too eclectic for some. Too boring for others. But I’m okay with that.

I hope that you will join me for the ride. God has already done, and will continue to do, crazy amazing in our lives.

And I just love to write about it.

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Share in the comments: Did a diagnosis or some other event dramatically change your life, your career, your goals?