“No one is normal. It only looks that way from across the street.”
This is a quote from the HBO/MAX show called DTF St. Louis. I found it to be dark, but funny, and pretty engaging. I’ll spare you the full plot review because that isn’t the focus of this plot.
The point is that all of us have an idea of what normal should look like. The moment you spend some time in someone else’s house, work with the general public, or work in a helping profession, that illusions is shattered. It happens as you grow up and begin to date too….my father once told me that if I wanted to peek into the future, look at your partner’s mother because that is what she’s going to turn into.
Wrong and right. Not cut and dried, not exactly. Just like a definition of normal.
The first decade of my life can be considered ‘normal’ by people around me: I had a warm place to live, clothing, food, and toys. I had friends, went to school, and had no visits to any health professional that raised any red flags.
As my readers know, I was born with muscular dystrophy. I always tell the story the same way….my childhood was completely normal. No symptoms and then, as I entered 6th grade in September of 1984, something changed. I walked to and from school with a small group of kids from my neighborhood. On that early September morning, I noticed that I was fatigued walking down the hill to my elementary school. I had a backpack on and my shoulders hurt. Aching and burning hurt. These adjectives applied to my calves as well.
As I write this, I can see it and remember it as clearly as I know the sky is blue. Something was different. Something was wrong.
My telling of the story is also wrong.
Recently, my wife and I (mostly my wife), spent A LOT of time digitizing all kinds of old media that no one should care about outside of our relatives. Old pictures, VHS tapes and, because I am OLD, silent super 8mm movies from my childhood. As we poured through the digitized footage I had all kinds of ‘oh shit’ moments. What I had uncovered was evidence of my muscle disease from shortly after birth.
My parents did not always bust out the movie camera. It was not like today. The thing wasn’t too small or too light and my father didn’t carry it around all that often. When he did, the home movies are what you would expect; people waving (there was no sound), people clowning around and people moving. Doing ‘normal’ things like riding a tricycle, hitting a baseball, walking, climbing, reaching for things, swimming, etc.
I combed through all of it and made edits. I was so excited by what I found that I didn’t even put all of the clips in chronological order. I’m close, but not exact…..close enough for jazz, as they say.
Want to see what was dismissed as me being a ‘cautious boy’?? Look at how I have just convinced you to watch a few minutes of Moeschen Home Movies. You’re welcome. I know that you are curious. You are wondering if I was a cute baby. You are about to click the link and watch what symptoms look like even though no one could have possibly known that something major was coming.
How could anyone? It was simply normal.
Stay awesome, stay safe, and stay tuned. I’m still cute.
Moeschen! 
My son was “normal” and diagnosed with LGMD2E at 13 too. Videos from his childhood have tiny clues too, and as a Mum, I was chasing something that felt a bit off since he was about 6. I’d really like to be able to read the milestones in the last couple of slides. Could you post them as separate images?