Myotonic Dystrophy Foundation Annual Conference 2016

Right now I’m sitting alone in the Chicago O’Hare airport. In a few hours, I’ll be in Washington DC checking into my hotel which is hosting the 2016 Myotonic Dystrophy Foundation Annual Conference.

I’ve never been to an MDF conference before, and to tell you the truth, I’m not really sure to know what to expect from my emotions. I’m going on invitation from the MDF program director, Paul Formaker, who invited me to share my book, From My Mother (, with the conference.

The prospect of meeting in person people I’ve grown to care about through Facebook myotonic dystrophy support groups is exciting, but also intimidating. Learning more about myotonic dystrophy and current research intrigues me, but I’m afraid so much of what I was told when I was young and my brother was alive will feel out of date or wrong. I want to share my story with families like mine, but there is a part of me that fears what a woman like my mother might feel in reading a story at least partially about her death.

I’ve lain awake at night lately thinking about these next few days, trying to role play how some of the conversations might go. What will it be like to shake hands with a woman affected by the exact same rare disease as my mother? Will I cry if I see a boy like my brother? What would I say to another adult sibling like me? How do I get to know someone who read my life story before meeting me? When we go as a group to Capitol Hill, will I want to talk or just listen?

With all the questions, I have very few answers. I will probably cry at some point, hopefully in private. I don’t think I’ve been in the same room as a woman with myotonic muscular dystrophy since my mother passed five years ago. September has been a hard month for me over the years. The weather changes, routine changes, and memories flood in.

When I was 16, my brother passed away at age 13 on September 23rd, 2002. When I was 25, my mother passed away at age 51 on September 20th, 2011. Her funeral service was on the same day my brother died – the anniversary of which is eight days away.

I don’t think I show much of what I feel anymore, but I feel it, and sometimes I write about it. I’ve never really learned how to contain those pangs of loss, or to control the stray thoughts. I feel it every year; I feel it in the quiet moments, when I’m alone, when no one will notice, when the thoughts in my head are louder than the noise around me.

My dad and I visited the gravesite of my mother and brother Monday. I left flowers and said a prayer. Then I went to share the story of From My Mother with the Minneapolis PEO, a group of women who prayed for me on my journey. That prayer helped immensely. I thought “This is where I’m meant to be. I can do this. I can be brave enough.”

That feeling lasted through the first airport, while my dad was still next to me. And I still feel kind of brave, but I’d be lying if I said I wasn’t afraid.

Some moments are bigger than our conscious brain can comprehend. “Life changing” is a hard word when you have two children and a mortgage. I’m not necessarily looking for life changing. If I was I might be in Chicago permanently. A few months ago I showed my husband a job posting with the Muscular Dystrophy Association looking for a social media director for their national branch in Chicago. I spoke to someone on the phone about it and daydreamed, but ultimately decided not to apply. I like the life I have and it just wasn’t the right time to join the urban jungle with my 10 month old daughter and 5 year old son. I don’t need life changing, at least not in logistics. But I do think this expereince will be transformational.

I already know I’ll come back a different person, and God willing, after this, I won’t have to decide what’s next so much as submit to what’s next and do my best to follow the call.

I’m okay with having fear inside me today. Fear comes when we are standing at the edge of something transformational. While this fear is a bit uncomfortable, it’s not unwelcome. This conference, this weekend of opportunity to interact with people I care so much about from a Facebook profile or shared family experiences, this is one of those tender moments in life where vulnerability is preferable – necessary.

I’ll blog more as I go, but for now, I’m going to embrace the uncomfortable edge of being so close to something I was meant for and make sure I’m ready for my next flight!

I’ll be in DC soon!


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