Breaking into a Smile.

Osteogenesis Imperfecta (OI) aka: ‘Brittle Bones’ may cause bones to break, but it doesn’t break the spirit of those who have it…in fact, it creates smiles.

50 Years.

That’s how long it took to meet another person who shared my condition. 50 years with a sense of isolation. 50 years of wondering if there was anyone else…(and just for the record, I’m 50!).

And so it happened today, with close to 100 people in attendance at the OI Family Day hosted by the amazing Sick Kids Hospital in Toronto Canada.

Truly wonderful kids, adults, and families all gathered together to learn, share information, and simply give each other loving support.

Here are some of the words that I’d use to describe what I witnessed at today’s information-sharing OI Family Day:

• Smiles
• Bravery
• Pain
• Smiles
• Uncertainty
• Curiosity
• Questions
• Smiles
• Respect
• Calmness
• Wisdom
• Smiles
• Discussions
• Caring
• Love
• Smiles
• Knowledge
• Concern
• Tears
• Advice
• Smiles
• Hope

Oh! Did I mention smiles?

Yes, I did.

But not just because it was a common sight throughout the day, but because it’s a common theme for anyone with OI.

Why is that? How can it be that people with this condition are more often than not, seen with a smile?

Why We Smile

Well, I don’t actually know for sure, but I have my theories. One theory is that OI instils a huge sense of gratitude. Grateful that right at this moment, we are OK. Grateful that right at this moment, we don’t have a broken bone or injury.

Although we know it may happen in the future, we are grateful that right now, all is well.

OI teaches us to live in the moment. It teaches us to appreciate the moment a little deeper because we know that in the future there’s the possibility of a fall, then the crack, then the searing pain…

Breaking a bone isn’t scary, we can deal with that. It’s the fear of breaking a bone that can be scary, but we just refuse to play the victim and let it scare us.

So anytime it hasn’t happened, we are joyful and happy and as a result, we smile…we are in the moment.

Catch us shortly after a break or injury and the smile probably won’t be seen.

Like all people, we are living the moment, and that moment just happens to not be a great one!

But it’s short-lived, the break is over, healing is happening and again we are filled with gratitude. Our smile is back.

“OI teaches us to live in the moment”

My Greatest Fear

I’m lucky because I’m ‘Type 1, very mild and have only broken about 15 bones in my 53 years. Others are not so fortunate and they are the true smiling heroes I write about today.

But my greatest fear earlier in life was that I would pass it on to my children. Not much was known about OI in the 70s and 80s so I never gave it much thought or time…none of us did. We were all too busy living in the moment.

But one day 25 years ago, I was at my home in Yokohama Japan and after an internet search on the subject encouraged by my sister, I discovered there is a 50% chance that I’d pass on my OI gene….OMG…no more OI!

I sat there at the computer feeling numbed and not knowing really how to process this new information.

After about 30 minutes of sitting virtually motionless, my fiancé came home from work. With her being the ever-stable and positive one, I was determined to be calm about it all and perhaps not even mention it…but one look at her face when she came through the door and I lost it.

Like everyone, I’ve cried many times in my life… but I’ve never really ‘wept’ until that point.

So as I hugged her, I just wept. I wept with disappointment, I wept with uncertainty, I wept for the pain of my future child. I just wept.. and I still hadn’t even got out a word, so she was having to deal with this and had no idea of why, but simply and quietly held me tight in unconditional loving support as I went through the emotions.

When I finally settled enough to talk through my continued tears, I told her what I had just learned. I told her that there is a 50% chance I’ll pass it on and therefore “I don’t want to have children”…

And what happened next changed everything…

She took a step back, put her hands firmly on the sides of my shoulders, looked straight into my eyes, and said calmly and confidently,

“Martin, look at you. Look at what you have been through in your life as a child, and look at the man that you have grown into and become. Do you really want to deprive our child of the chance to do the same”?

Well… as my fiancé, if there was ever any tiny sliver of doubt in the back of my mind that she may not be ‘the one’, then that sliver had just been blown out of mental existence.

The Happy Ending:

The hug resumed, the weeping tempered to a relieved and loving cry, reduced into a sniffle, and then finally vanished and morphed into a smile (the OI effect again!?).

We got married as planned, she got pregnant as planned, and our son Noah was born.

Although this resulted in him receiving my ‘feared 50%’, he also received a gift that only a few have… the ‘OI Smile’. And that is something both he and I proudly share together with you all.

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