Twenty

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Today we celebrate Benjamin. Somehow 20 years have slipped by. I swear his birthday has hit me harder than my own post 5 – 0 birthdays.

Since he was diagnosed at four and a half months old, we’ve lived every day conscious of, and in awe of his strength and fragility. We know his life expectancy is uncertain. We also know Benjamin is happy, has a strong will to survive, and that we have very little control over the matter.

So we celebrate Benjamin. Every. Day. By sharing the books and music and TV shows he loves. By looking his eyes and sharing his laughter. Today we will also celebrate with lots of cake and presents. Next month we’ll celebrate again with family. I’ve decided there’s no reason not to celebrate at every possible opportunity.

Over the past few months, I’ve watched an unsettling number of parents in our lissencephaly world bury their children. Their strength and grief are incredible to witness. So for them, I celebrate Benjamin because he’s with me.

Enjoy some pictures of Benjamin’s life.

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Happy 20th birthday my beautiful, beautiful boy. Mama loves you!

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The Rumpus

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Benjamin Christmas 2018

 

Many of you know that I’ve been working on a memoir for years. Today, I’m honored to have an essay up on The Rumpus that speaks to the heart and soul of the memoir. Please take a look at Death, Doorways, and Dance and feel free to share.

Thank you.

 

Joanne