Monday, May 20, 2013

Blogging my Harper bean

The only thing worse than having to recount the details of Harper's death is doing so while suffering from a stomach virus. And yet, I dragged my dizzy, dehydrated self to the therapist today. After the long hunt to find her, cancelling the appointment didn't seem to be a very good option.

"What are you doing to cope?", she asked.

So I told her about the strategies. The exercise. The organizing. The hikes with Denver Dog. The Shea time. The planning of trips. The hopes for a new baby. And, of course, this blog.

This blog.

The evolution of this blog was nothing I expected. It began as a private exercise, an outlet for the fear and worry I was feeling during pregnancy, a place to virtually bang my head against a wall when every doctor's appointment yielded more bad news. A place to keep my sanity.

Then it became a tool for sharing news about Harper, for dealing with the overwhelming inquiries from our loved ones.

What is it now?

First and foremost, it is an act of pure selfishness on my part. Writing makes me feel better. It always has. I love writing for many of the same reasons I love reading; because written language captures emotions and experiences in ways that spoken word just cannot do. Beauty can be formed in sentences that would be lost when spoken aloud. When I'm feeling down or sick or lonely, I take comfort in the pages of a well-loved book, losing myself in it like a soft and fuzzy blanket. When I need to shut out the world around me, to take a break from the every day or a given moment, words come to my rescue. The gorgeous and heartfelt words written in the deluge of sympathy cards we received have helped me cry, in a therapeutic way, every day over the past few weeks.

Also in a selfish mien, if I write how I am feeling, if everyone I know is reading it, then I don't have to talk about it. (The antithesis of my son, whose favorite phrase is, "Let's talk about it.") It is the ultimate kryptonite to the instinctive question, "How are you?" I don't have to worry as much about breaking down into full out sobbing mode when talking to someone, because I've already done that over my keyboard.

But this blog has also become something more.

Something disconcerting, in some ways, because I now know there are a lot of you out there reading this. Friends. Family members. Loved ones. Strangers. More than 20,000 page views worth of you. I won't say that doesn't give me pause. These words have represented my raw emotions. You have all ridden right along with me through every agonizing and joyous and bewildering moment of Harper's birth, her life, her death, and our lives without her.

However, there is something freeing about that, too. I am much better now, in even just this past short month, at being honest about how I'm feeling, about being candid in conversation with those I love, about allowing myself to break down, even in public if need me, because I've learned that when you put yourself out there, when you let people know exactly the maelstrom your going through, they hug you back. They catch you. They keep you standing when all you really want to do is fall down in a heap.

More importantly, I strongly believe that Harper lives on thanks to this blog. So many people - some I know well, some I've never met - have written me to tell me how Harper's story has affected them. How they will always carry a peace of her and never forget her. How much they enjoyed meeting her and growing to love her through the lens of these words.

That means something to me. It means that all the time that I carried Harper within me, all of the anxiety and stress and sadness and terror, the 17 short days we had with her - none of that was wasted. Thanks to Harper, some of you will find yourselves stopping to hug your kids more. Or enjoy the moment in which you're living. Or spare a kind thought for a stranger. Or reconnect with your own friends and family. I know this, because I've already heard some of these stories. And it makes me so incredibly happy, in a tears streaming down my face kind of way, to know that my writing has helped give Harper's life such extraordinary meaning.

Today, once the sickness had taken its toll and I was lying about to miserable to do anything else, I read Emily Rapp's book, The Still Point in the Turning World, which is about her son, Ronan's life and death with Tay Sachs disease.

Reading a book about a baby dying of a rare genetic disorder two weeks after your own baby has died may seem like an odd choice of reading material.

But it's actually comforting to read about the experiences of another mom who has been through this. I found myself relating to so much of Emily Rapp's story - the surprise diagnosis despite all the genetic testing, the balance of wanting your child to live longer while also wanting to see a quick end to suffering, the agony of making hospice care decisions, the "wrongness" that you feel at the death of a baby, the community of strength you build from other mothers whose children have or had the same disease, the fierce determination that Every Single Moment of your baby's life be filled with love, even if you're not really sure he or she can actually see/hear/sense you. The driving need to write about it all, perhaps making more sense in her case, given she's a professional writer. Emily Rapp clearly also loves language - and the quotes and readings that are sprinkled throughout her book express what she's feeling - and what I'm feeling - in a way that is a truly amazing.

I may have read her book even had we not gone through the experience with Harper. But I don't think I would really have appreciated it the same way.

I think what she went through with her son, who seemed fine for the first months of his life and then steadily declined over two years, sounds so much harder than our journey with Harper, who we barely had time to get to know, whose diagnosis was clear from the first day. But, as Eli Wiesel has said, it is impossible to compare tragedies.

"It is so new," my therapist told me. "Time will help."

It doesn't feel new, I told her. I feel like I've been mourning Harper forever.

"In some ways you have," she said. "This was not an event of one month or two weeks. It was 9 months of stress and worry and bad news, followed by an intense month of unimaginable loss and heartache. It takes time to recover from that."

Going back and reading this blog, I realize there's wisdom there.

Lou unexpectedly had to work late, so I dragged myself out of bed a second time, to pick Shea up from school. He hopped out of the minivan and announced he wanted to water the flowers and, specifically, Harper's bushes.

"Thank you, Shea," I said to him, "It was very nice of you to offer to do that."

"I will water the bushes and they will grow and Harper will be happy," he informed me, smiling.

Can't argue with that.


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