Sunday, August 9, 2015

What color are you painting the nursery?

How did you respond to questions about your baby, while you were pregnant?

I have been asked this question when talking about carrying Joan to term knowing that she had a life-limiting condition.  My answer was, "I avoided it as much as possible."  

Inevitably well-meaning acquaintances and strangers – in the grocery store, public restrooms, etc.  see you pregnant and ask questions.

When are you due?
Is it a boy or a girl?
What color are you painting the nursery? 

And my personal favorite...
Are you excited?

For a mom carrying to term with a life-limiting diagnosis for her unborn child these questions are often difficult, to say the least. For me, this was one of the most difficult parts. Repeatedly explaining that our baby would be born with profound challenges and slim odds of survival was like reliving the devastating news each time. While we were still processing the tragic reality ourselves.

So I tried to avoid these exchanges as much as possible, or answer as briefly and vaguely as possible and escape quickly.

How do you tell well-meaning people that your baby is not expected to survive? That you are not setting up a nursery. That excitement is not the predominant emotion that you are feeling. Instead you are experiencing tremendous grief, anxiety, and a myriad of mixed emotions. While trying to embrace the precious short time with your baby.

So if the person was a stranger or someone I was not likely to see again I didn't tell them. I pretended that I was having a "normal" pregnancy. I even lied sometimes. I didn't tell them that my baby would likely not come home with us. I found that if I did I would usually get one of two reactions.

A look of horror. Pity. Awkward discomfort. To which I would become the comforter, trying to make the situation less unpleasant. This reaction was usually followed by unhelpful, insensitive comments.  The worst of which being some form of, Why didn't you terminate?

Or I would get responses attempting optimism such as, Maybe the doctors and tests are wrong. Can't they do surgery and save the baby? Hope and pray for a miracle. Somehow it'll turn out okay.

An important part the carrying to term experience is accepting that your child may not survive to birth or ever leave the hospital. And embracing a different kind of hope. Hope to meet and hold your baby. To create memories during the pregnancy and any possible time after. So these latter comments are not helpful.

Wouldn't it be wonderful if parents like us could openly share their experience with others, even strangers, without fear of insensitive reactions? That people would respond with compassion, understanding and awareness that sometimes babies don't survive. Because parents need and deserve compassionate support.

If you carried to term with a life-limiting diagnosis, what was your experience when answering questions about your baby during the pregnancy?