My speech from this year’s NDF gala

I am so thankful for all the people who tirelessly dedicated themselves to making this year’s NDF gala yet another successful event. You can click on the link below to watch my speech…

My speech from this year’s NDF gala 2014

Reflections from an airport. (Be forewarned, there are a…

Sometimes I like to wait until I’ve more fully processed my thoughts and feelings about something before writing a blog post. And other times, I blog about something to more fully understand how I feel and where I stand on something. This is one of those times.

Yesterday I spent an entire day from 9am to 6:30pm sitting in a small lecture hall (which appeared to have been cryogenically frozen since 1979) at Beuth Hochschelu für Technik Berlin aka the University of Applied Sciences. I was there for the GNE Myopathy (the new name for HIBM) Consortium. Virtually every scientist/researcher who is working directly on HIBM or indirectly on neuromuscular diseases, gene therapies or metabolic treatments was there.

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Berlin

I am in Berlin. Yes, Berlin, Germany. If you read my last post, then I know you already know this. But I’m still taking it in. And though I have carved out this specific time in front of my laptop for gala speech-writing, I can’t seem to focus on it. So instead (and since this is why I started blogging in the first place), I’m going write about the space I’m in right now.

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Hank and Me

Never in my life did I think I’d find myself hanging out with Hank. He was simply not my type. I saw no reason to ever have to get close to someone like him. We just didn’t have a connection.

A couple of years ago, it seemed that everywhere I went, I saw Hank. I rebuffed his advances at first, but he kept pursuing me. Usually, that kind of perseverance is a turn on, but not this time. Personally, I didn’t find him very attractive and I felt like he’d never be able to keep up with my fast-paced life. If anything, he would interfere with it. Plus, he’s just kind of annoying. He requires a lot of attention, always needing to hold hands, always fearful of getting left behind somewhere. Not to mention, he’s totally socially awkward. He doesn’t know what to say when he walks into a room of new people. He’s only ever come out with me a few times, but he’s always so self-conscious. I try to tell him he has nothing to be embarrassed or ashamed of, but he’s still quite shy.

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Quick follow-up/Love is Everything

I’m not usually one to blog two days in a row, so I will try keep this short and to the point…

The profoundly therapeutic effect of the kind of love and compassion that comes pouring in after a blog post is one that never ceases to amaze me. My reality from last night to today hasn’t changed, yet my emotional state feels so much more calm, regulated and at peace. Less fearful. More hopeful. Less alone.

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Preparing for Landing

The other day, I  picked up my older son from school and tripped and fell on the way back to the parked car. It happens sometimes.  As we waited at a stop sign  on our way home, I saw one of the dad’s from his kindergarten class 3  years ago walking in front of us.  I knew he had had a stroke a few years back. He walked with a limp and for the first time, I saw him crossing  the street using two canes. As I stared at him through the windshield, I decided, somewhat spontaneously, that there was no better time to broach the subject of  a cane with my son than at that moment. “Oh look, X’s dad has two canes. Maybe I’ll get one like his,” I said. And then waited. Right away he responded, “You’re going to get a cane, mommy? That looks weird! That would be weird. I don’t think you should get one.” Of course, I validated his feelings with a simple, “Yes, you’re right. It would look different.” He went on to ask why I needed one. I explained that I didn’t necessarily need one, but that as different and as “strange”  as it would be to use one, I’d rather be safe than actually risk getting hurt. And so we left it at that. And that was satisfactory to him.

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