Butterfly release

Most years I promise I have quiet birthdays with my family. This year and last year were notable exceptions. On the eve of the 50th anniversary of my terrestrial debut, I wanted to share what I did last year...

I wanted to do something special to celebrate my birthday last year with those closest to me. After a lot of thought, I decided to do a mass release of monarch butterflies into the sky. Why butterflies? Well, butterflies, particularly monarchs, have become a symbol to people with FOP, the rare disease that I have. Butterflies go through cycles of changes. They must adapt to new circumstances. They are symbols of hope and new beginnings.

There is a Native American legend about the release of butterflies. If anyone desires a wish to come true, it is necessary to capture a butterfly and whisper that wish to it. Since a butterfly can make no sound, the butterfly cannot reveal the wish to anyone but the Great Spirit who hears and sees all. In return for giving the beautiful butterfly its freedom and releasing it to the sky, the Great Spirit always grants the wish.

I love thinking of the butterfly in these terms, and I chose to wish for two things that mattered the most to me. I hope these wishes come true with all of my heart. As you watch this video, I invite you do the same, just as if you had been here in person to share the experience with me. 

I also had a second reason for doing a butterfly release, especially last year. I normally don’t think about the fact that I have a 50% chance of living past 41 and I’m currently 49. I prefer instead to live in the spirit of this quote from Frederick Buechner: “One life on this earth is all that we get. Whether it is enough or not enough, and the obvious conclusion would seem to be that at the very least we are fools if we do not live it as bravely and beautifully was we can.” But mortality feels a bit closer this year, as I’ve known three people with my disease who recently died who were much younger than I am, was well as a good friend who was near my own age. So while most people probably don’t celebrate 49 as anything special and instead celebrate the momentous number of 50, I’m choosing to cherish 49, and every year hereafter, knowing that nothing is guaranteed in life. I’m choosing to celebrate those we have loved who are no longer with us for touching our lives. I’m choosing to celebrate butterflies.
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“A butterfly lights beside us like a sunbeam.
And for a brief moment its glory and beauty
Belong in our world.
But then it flies on again.
And though we wish it could have stayed,
We feel so blessed to have seen it.”
—author unknown