A few weeks before Beckett was diagnosed in utero, I wrote something in a spontaneous moment of creativity.  I have often scribbled a fleeting thought down for expansion later.  It was short, just a sentence.  But what I wrote was “everyone wants to be the hero in their story.”

I have thought back on that small string of words often.  The irony is not missed by me.  I wrote about craving heroics and my wish was shortly thereafter granted.  But of course, as so often is the case in many great tales about heroes, it was not the mission I wanted to take up.  We want to be heroes, yes.  But heroes fulfilling beautiful destinies, not tragic ones.  Fighting for the life of your child is as ugly as heroics get.  Worse yet, that your child has to be the actual fighter.  Parents of medically complex children frequently discuss how heroic their children are.  There is a variety of words that are used constantly when describing them.  Warriors.  Champions.  Brave.  Strong.  Always battling and always waging a war for survival.  For knowledge and for science and for life itself.  There are heroes among us, and often times they are children.

Our family recently visited a popular southern California theme park.  Our surviving child is four and we threw ourselves in to the opportunity to bask in the sunlight and boundless fun for a week.  I grew up visiting California frequently, and was excited to steep my own offspring in a few days of discovering this kind of vacation charm.  The trip was filled with joy and laughter and good times.  We enjoyed being together as a family after so many lost days, and casual happiness after the least casual year of our lives.  As we rounded out one of our evenings, we settled in to watch a beautiful light show on the water.  In the heat of the day, as we bustled from location to location with our big kid, it was easy to push away feelings of sadness.  But under the moon, surrounded by colors and sound meant to take me to enchanting places, I was struck dumb with grief.  Where once I was a girl filled with notions of whimsical fantasies and all of the bewitching wonder they possess, I am now a woman who cannot be captivated by a beautiful fairytale.  I cannot be told that all dreams can come true and that all things are possible.  My deepest of desires is to have a complete family and a complete heart.  And that cannot be.

I wept as I leaned against the wrought iron fence between myself and the show.  Not because of how moved I was by the presentation, but for the person I can never be again.  I can’t be carried off in to fantastical “what if’s” the way I could be every time before.  Pieces of me died with my son.  And I don’t mean evolved or changed.  I mean that they died, and they are gone now.  I don’t realize they are gone until I expect them to come out of me and instead I find darkness.  I ended up looking away from the manufactured production happening in front of me and cast my eyes to the stars instead.  Something real and strangely more tangible in my grief than what was happening a few feet away.  Beckett isn’t in fairytales.  But he could be in the stars.

It wasn’t all heartbreak.  My daughter was lit up from the inside out watching the water.  She sang.  She swayed in her fathers arms.  She exclaimed excitedly at the things she recognized and enjoyed.  She laughed and hugged us both and kissed her daddy when the princesses kissed their princes.  All of the magic typically surrounding a family in that environment was still bestowed upon her.  Her parents were crying as we both compulsively found our thoughts in a land of sorrow, but she paid us no attention.  She was experiencing the magic.  I am a logical being, and I have no basis in that logic for the following feelings.  But as I watched her, I pleaded that the universe would at least grant me this.  If you left no earthly magic for my son, please fill my daughters life with it.   My foolhardy hope now is that fate will find it fitting to give this child everything it wouldn’t give to my other.  Let the suffering end with my husband and I.  Let her always believe in fairytales.

Magic is going to be muted for me now.  I discovered that in a theme park filled with sparkles and sunshine.  I can’t have a fairytale, but I can be a hero.  We all have a story, and everyone wants to be the hero in theirs.  I am learning how to be mine.  I cannot live an existence for Beckett.  All I can do is live my best life.  And love him so damn much.