Emily's Story
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If you're a friend...

If you're investigating this site on behalf of a friend, I want to thank you. You're doing the most important thing a friend can do for a mother in one of the worst situations imaginable. I'm sure the parents appreciate your taking the time to do some internet investigation. I know that several of my friends went web-hunting for sites on anencephaly, and one even wrote to reassure me that there was nothing scary on certain pages.

There's so little a friend can do in these circumstances. You can't take away the pain. You can't offer an easy way out. By being a friend, you're going to have to suffer right through the baby's pregnancy and death along with the parents. But I found the magic was, those friends who accepted that they couldn't make it any easier did make it easier just by virtue of being there. They listened. They offered practical help. They looked out for my needs.

Nothing on this site is for-parents-only or for-grandparents-only. Look through everything. Absorb whatever information you can and be on-hand to help the parents make the difficult visits, the heart-rending shopping trips, and so on. Even once you've determined that there's "nothing scary" here, you may want to look over the issues the parents will face or are facing in order to prepare yourself for what will come.

If you're here because you don't know what to do, I know what I wanted from my friends, and I know that most of them gave it to me. I wanted them to follow my cues and talk about Emily with the same freedom I did. I wanted them to laugh at my "gallows-humor" even if they weren't sure it was entirely polite to laugh. (Well, I wasn't sure it was entirely okay to joke around... We have no etiquette for death in America.) I wanted them to check up on me from time to time, and then when they knew I was going to the hospital, I wanted them to call for information and not mind when I didn't feel up to talking to them.

Afterward, I wanted their presence at the funeral. I wanted sympathy cards. I wanted them to tell me what reminded them of my daughter. I wanted them to listen. I wanted them to ask about her photographs and I wanted them to come to the gravesite with me. And I very much appreciated the meals some of them brought. I know the food tasted even better because it meant someone cared that I was eating three meals a day. It was a tangible way of saying I still mattered to someone.

But what to do? All the nebulous "If there's anything I can do" meant very little to me, personally. In the middle of chaos, I found it impossible to find something for the well-wishers to do. Take the reins and offer something specific. The best idea I've ever heard is sending the family a gift certificate to their favorite pizza place that delivers, or one of those carry-out services that delivers from multiple restaurants that don't deliver. If you're at a distance, a gift that memorializes the baby without being too "useful" might be a good idea. I trembled at the thought of getting outfits Emily would never wear, but I appreciated the picture frame, the memory box with Emily's name, the journal, the hand-made baby blanket, and the stuffed animal which my friends and family sent. I've heard of other moms who really appreciated mother-and-child necklaces (either for wearing or saving), candles, "care packages" of non-perishable foods, silly gifts that had nothing to do with grieving, grief books, journals, and long "dear baby" letters meant for the memory book. There's a "memorial tear" necklace which I think is very beautiful, available from Leaflet Missal Company for anywhere from $10 to $90 (product numbers 08897, 06604 or 07590). And no, they haven't underwritten this site. :-)

After the baby's death, cards on the monthly anniversaries are much appreciated by many moms who feel everyone else has forgotten. I was surprised by how many people called on Emily's one-year anniversary, some without ever saying why.

If you don't know what to say, still say something. Anything is better than nothing. Even if you don't know how to feel, the parents in trouble still need to know they have supportive friends who care about them and who won't vanish when they're in need. The formula, at its simplest, is:
a) I'm very, very sorry to hear about [specific mention of the bad thing that happened, lets the person know you aren't ashamed of it. Telling the person what it is won't make them hurt. It's not as if they forgot and you're reminding them.]
b) I'm praying for you/I'm thinking about you [depending on personal religious beliefs.]
That's shorthand for "Well crud, I have no idea what to say."

Your words don't have to be poetic or pain-relieving. You're not going to win a pulitzer prize for your message. We received a number of confused (and confusing) emails after we spread word of the diagnosis. They were all heartfelt, though, and I appreciated that a lot more than the folks who tried to be eloquent or to lift us out of our pain. Don't worry about saying the "wrong" thing. The only wrong thing is silence.

When we honestly ask ourselves which persons in our lives mean the most to us, we often find that it is those who, instead of giving much advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a gentle and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not-curing, not-healing and face with us the reality of our powerlessness, that is the friend who cares."

-Henri J.M. Nouwen, "Out of Solitude" (as quoted in Pregnancy After A Loss)

Thanks again for visiting.

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