My kids are one in a million. Oh, come on, everyone says that, right? Well, to be more literal, they are one in 35 million. There are 7 billion people on this planet. There are less than 200 documented cases of Warburg Micro Syndrome.
When the kids were young and we were traipsing from geneticist to geneticist, we were regularly told that their combination of anomalies was something new. To us, this was ridiculous. In the thousands of years prior to our existence, something like this had never, ever been seen before? As we lost faith in the field of genetics, we gained comfort in being the ‘only ones.’
It was kind of nice not having our life’s path ironed out. While I yearned for another mom to share our struggles and delights with, it was nice having an empty slate. We could write our own story, not bound by others who had gone before us. That’s what a diagnosis is, right? We quickly google other stories and photos and wrap ourselves into that story.
As time went on, science caught up to us. We were no longer the only ones. Little by little, through the advances in genetic testing, little ones from around the world began to pop up.
To this day, MaryEllen and Kevin are the oldest known people in the world with WMS. Their books are still being written, without interference from Google.
The other side of the coin though, is that we are the googled. Young families look to us as their road map of the years to come.
It is a dream come true for me to be helpful and inspiring to the new families who are living through the shock and grief that I know too well. I am also keenly aware of the responsibility this brings. I don’t ever want our book’s pages to become a part of theirs. To me, their slate is a precious gem that shall remain untarnished by our outside influence. I want to love and support, but at the same time, not frighten and discourage. It is a very thin line to walk. I take this role as the ‘oldest mom’ (HA!) seriously!
Maybe that’s how it was supposed to be. Living in uncharted territory showed me the gift that it is.
Every day prepares you for the next. Don’t look down the road when you have right now.
This is good advice for all of us.