The "D" words

In every conversation with hospice or counselors or other parents, one phrase that keeps reappearing is "we don't talk about death."

And that's true. Even typing this blog, I find myself hesitating as I type words like death, dead, dying, died. When talking or emailing, I tend to use euphemisms, like "Haper's passing" or "We lost her" as if we've lost track of her at the mall or beach, and she'll turn up any moment.

But baby death is eerily like pregnancy or the newborn stage, where you're reduced to thinking of everything in days or weeks. Yet, unlike making or raising a baby, with Harper's life, there will be no progress - she will always only have 17 days. Death, on the other hand, progresses.

How many days has it been?, a mother - who runs a support group on infant loss - asked me this morning. Nine days, I told her, without hesitation. It will be four weeks on Thursday since she was born and nine days since she died.

It gets better, she told me.

The only thing worse than the sadness is the guilt when you don't feel sad. And the obsessive behavior used to distract from both the guilt and the sadness.

In the past couple days, there have been moments of actual happiness. We've begun planning a trip to Disney, and I found myself excited for the first time about a future plan. But then I remember the only reason we can do this trip - Lou has a conference and Shea and I will be joining him - is because our little heart baby isn't here (we weren't sure we'd be able to take her, when I was pregnant, since the heart condition may have made travel difficult).

Then the wave of guilt hits.

Shouldn't I be sad in every moment? Where is the line in which you're not a horrible person because you're going about your everyday activities, you're laughing or planning for the future, you're enjoying life again, you're not thinking about your baby who has died? When is that OK?

Eight days? Nine days? Three weeks? Three years?

Is it OK that I felt happiness on day eight? That seems too soon.

Today I am back to sad. In some strange way, that feels better. Sad seems normal. Sad seems right. As much as I hate the uncontrollable crying, the bursting into tears at a kind note or an NPR story on dying rhinos (yes, I actually did that, the rhino was crying and the sound made me weep), it feels like what you should do when your baby dies. Waking up after a night of nightmares and not wanting to get out of bed, which was the start of my morning, fits my pre-conceived notions of a grieving mother.

Enjoying a hike outside with my dog feels wrong.

Normal life seems so abnormal now.

To distract myself, I obsess. I turn my brain off and make myself busy. I organize. I clean. I plan.I research.

Basement playroom = nearly done. Appointments with counselors and my trainer = booked. Obsessive exercise = natch.

Reams of research on how soon you can get pregnant again after a c-section = saved and printed.

Still, I avoid the chores directly related to Harper's death. Cleaning up from sitting shiva. Putting away baby clothes. Figuring out where to put the bassinet. Writing out thank you notes.

"Are you OK?", Lou asks all the time, giving me hugs.

Stop asking me that, I tell him. It's a question I can't answer.