Wednesday, June 12, 2013

Going public

Dear Harper bean,

I think you may have been proud of your mommy today, bean. I talked about your in front of a crowded room of people, and boy, was it hard! Not the talking in front of a big group of people - I do that all the time - but sharing you with them without bursting into tears.

("I didn't know you were going to do that," a colleague said. Truthfully, I wasn't even sure I was going to do it until the moment it happened...)

Members of the audience, who were there to hear about the economic impact of the Human Genome Project and were probably a little startled to hear their MC utter the words "Eight weeks ago I gave birth to a beautiful baby girl we named Harper. Seventeen days later she died", told me afterwards that I was brave. But I don't think that's true. Talking about you isn't scary, it's a release - the difficulty is not in saying the words but in holding together my tenuous emotional control as I say them.

You will be happy to know, Harper, that your public debut was in a pretty classy venue at the U.S. Capitol, on a gorgeous day worthy of a Frank Capra movie set. Only the best for you, bean!

Besides, who am I to ask other parents and their children, patients and their families, to share their stories if I am unwilling to share mine? That would be a hypocrisy I couldn't live with. Although I admit to jealousy that other stories have happier endings.

I crave happy endings. Facebook is causing me tremendous, unintentional pain these days, little bean, because it is full of happy baby pictures, happy baby news, happy baby stories. But I also yearn for those, I can't look away, because I need that hope that happy endings still exist. That we'll get to be the ones someday posting those pictures again.

Today, I learned of another, new SLOS family whose newborn daughter looks a lot like you did, bean. And my heart ached and ached in empathy for their difficult journey. It seems like yesterday we were posting nearly identical pictures, it also feels like a lifetime ago.

Also today, a fellow SLOS mommy got to share the news she is pregnant with a healthy baby. Happiness and hope. Craving fulfilled.

Over a hundred more people, strangers in a room, know your name now, Harper. Happy eight week birthday, bean. I love you still. --Mommy

PS - My experience with you has heightened my passion and awareness on certain political issues. This bill makes me incredibly angry:




3 comments:

  1. You did an amazing job. I'm so glad Harper was able to help you make an impact on the world today. I'm right there with you on the agony and joy of FaceBook. I'm hoping for a rainbow for both of us.

    ReplyDelete
  2. This is the first time in a few weeks that I've checked in to see how things were going.

    As always, I was moved to tears. I know that you are blogging for yourself--to have an outlet for your overwhelming grief and to preserve Harper's memory.

    But you are also doing something for us--your readers. Life looks easy from the outside, and for most of us, it may be difficult at times, but it's manageable. You were dealt an impossible hand. (You once called it a shit sandwich. Fair enough.) And yet, somehow you are playing it.

    ReplyDelete
  3. Christine - I am so, so very sorry for your loss of little Joseph! Hopefully, it will be a year of rainbows.

    ReplyDelete