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Twinkle, twinkle little bat……


When I was first diagnosed with LQTS, my family found the stories on the C.A.R.E Foundation website.  One in particular- “How to live to be 102 with Long QT”- made an impact on me and my family.  Reading a story of someone who lived a long full life with this diagnosis was exactly the message we needed at that moment in time.

At some point, I wrote down my story.   I thought it could perhaps help someone else, the way that story of living to 102 with LQTS had helped me.

As I began sharing my story, my mom asked me “Are you sure you want this to be such a big part of your life?”  She wasn’t discouraging it, just making me think as mothers do.
I replied simply: “This is a part of my life.  I can’t change that.  If it helps one person, it’s worth it.”

So I shared my story, on the C.A.R.E website and in patient communities on Facebook.
“I’m planning on living to 107” became my catchphrase.

Why 107?  I can’t say for sure, but I think it was because I’d read that story of a woman who lived to 102 with Long QT.  I had short term memory loss, getting much better by this point, but still a little off.   So 107 it was.

I later connected  with the woman who wrote that story.  She had posted in a LQTS group on Facebook about her grandma who lived to be 102, and I realized “that’s who wrote that story!”  I told her why I said I was going to live to be 107.   We decided her grandma wouldn’t have minded that I remembered wrong.

The C.A.R.E Foundation no longer exists, but my story is now on the SADS website: Upon Waking

All these years later, I can honestly say that I’ve never regretted being public with my patient story (and I’ve been pretty darn public).
Sometimes I forget why I felt such a need to share my experience.   Other times I remember.

One day last month, I remembered.  I connected with a local family, a 9 year old girl who survived an out of hospital SCA and her mom.

When I said “if it helps one person, it’s worth it” to my mother all those years ago, a moment I don’t actually remember, I was right.
I have helped one person, over and over and over.  One person in particular, I helped over and over and over.
That person was me.  Hopefully, I helped a few others along the way.

Last month, as I hung upside down like a bat next to this amazing survivor girl,  I wasn’t sure who was most helped by this meeting.  Was it Sofia?   Was it her mom, Shawna?    Was it me?   Or was it all of us?

Does it matter?   Nah.
What mattered was this moment.
What mattered was that I woke up on this morning and took the train to meet Shawna and Sofia.
One morning, long ago, I didn’t wake up.
One day, not as long ago, Sofia ran playing tag and dropped to the grass.
This day, I woke up to a text from Shawna saying “Want to meet for lunch at 12:30?”
This day, I ran across the grass doing cartwheels with the amazing Sofia.
This day, there was no CPR or ambulances or helicopters or hypothermia comas.
This day, there was no waiting to see if we would survive neurologically intact.
This day, we were some people in a park, laughing and hanging upside down like bats.

Well, Shawna wasn’t.  Somebody had to take the picture. : )