How I dealt with family and friends

Let me start by saying that my name is Azariah, and I lost my daughter Ariel Elisabeth to anencephaly in 1972, many years ago. She lived about 4 hours and was born at full term. Immediately after her death, I was pregnant again, and lost her little sister too early in 1972. This was to a miscarriage, but the baby was delivered whole and was missing the top of the head. I named her Catherine Angelica.

The world was a different place then, and there was no internet, no easy access to information. Babies with anencephaly were referred to by doctors as "monsters," the very real medical term. Mothers were often encouraged to not see these babies when born. Most mothers who knew in advance sought out to end the pregnancy which in most areas was allowed "for the sake of the mother's mental health." It was strongly encouraged.

Unfortunately, real offers of help from family and friends can be misinterpreted and gravely misunderstood. I know now that most people mean well and want to help. Few and far between are those who really want to hurt you. My own family wanted me to understand that if I ended my pregnancy early (at 16 weeks with my daughter Ariel Elisabeth), they would think that the right thing to do. They did not want me to be hurt by carrying a baby who would certainly die either during my pregnancy or shortly after birth.

They truly wanted to help.

They offered to keep me at the family home, to pay for my support and all medical bills though, no matter what I decided. I misunderstood what they offered and turned away from them completely because I was so very angry that my daughter would most certainly die. I guess, looking back, that I blamed them for even suggesting that I end the pregnancy. All this has been resolved in time. We are a most close family now. But back then all I had to carry me and give me strength to go on with the pregnancy was sheer anger.

I wish my parents and family would have persisted in trying to get in touch with me, no matter what. Guess they didn't know what to do, what to say, and they themselves were overwhelmed by my fury. I also turned all friendships away.

The help that was supportive came from my temple. The members did concrete, objective things. Food was prepared and dropped off with no expectation that I entertain those who came by. Offers were made to clean my living place as I had no energy to do so.

My Rabbi was of much help as he never told me "platitudes" or "cliches" such as "It's God's plan." He listened and reflected back my hurt.

So the people from Temple became my family, became my friends. My Rabbi did the most. He helped with much of the funeral arrangments, went with me to purchase the gravesite.

These are things I wish my parents and sisters and brothers had helped with, but I was too stubborn. I did find the very best of support to be in true listening without giving advice, in concrete and practical help also. And especially so the support given when I expressed my deep anger at God (now resolved). I said, "Rabbi, I hate God. Why is God going to kill my baby?" He reflected back my feelings, didn't tell me I was wrong, etc. "You hate God because you think God wants to kill your baby. No loving God wants to kill little babies. God suffers with you. He knows you are angry at Him. That is okay right now. He understands."

After my daughters were gone, I got back in touch with my family. This time things were oh so much different. They listened and if I was crying, that was okay, no need to rush me off into a back room. My mother started a beautiful gardening project at Ariel's gravesite. This continues even today when she is almost 80 years old.

Over the years, so much support was given. The best is that Ariel isn't forgotten, she is mentioned at holidays, Mother's Days, and both Catherine and Ariel are mentioned. My grown sons are active in doing things of real help like distributing pamphlets from the Centers for Disease Control on the importance of folic acid and the nature of neural tube defects. They participate in fund-raisers to promote research. They encouraged me to do my best to be of any help I can to others, not just the receiver of support. And that's what I aim to do.

Advice for others? Be there and keep trying to be there even if you're turned away. Listen, listen, listen. And be prepared to listen not just during but afterwards. Don't forget that baby's date of loss. Remember and acknowledge it. Don't be afraid to put up photos of the baby. It's a comfort.

Help in whatever way you can and remember that the loss of a child isn't something a parent gets over easily. It may take years. And even then, it's still in the background somewhere. Never forget.

And don't get angry if the parent gets angry at you. They aren't, not really. You're just an easy target.

Don't tell them what to think, feel, or believe. Not the time for doctrine or dogma. And remember that baby in the years to come. Show you remember. It will mean the world to that mother and father.

Azariah
mom to Ariel and Catherine

Last updated March 29, 2019