Monday, December 2, 2013

Why our loss was not like a miscarriage

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One of the things that difficult for me shortly after our baby was diagnosed prenatally with Pentalogy of Cantrell was the way that people would immediately bring up their miscarriage.

Until last week, we had not had a miscarriage.  When I saw my baby on the ultrasound screen, he was wiggling and waving.  His heart was going 155 beats per minute.  He was very much alive, but something was very wrong with his anatomy.

I simply couldn't handle the comparison of my living, thriving baby to a baby lost without warning.  Neither situation is necessarily easier, but they are definitely different.  I knew this wasn't the same because a few weeks before I had experienced a threatened miscarriage.  I knew that fear and I knew that if I had lost my baby I would have cried out at the injustice of losing a baby for seemingly no reason at all.

As it turned out, we knew there was a very obvious reason for our baby to not live and when he did pass away, we weren't angry and confused.  We knew the reason he couldn't have lived and it was easier to accept for us.

But in the meantime, before the loss, I was staring down the 6 month timeline of carrying to term.  Picturing buying bigger pants and maternity shirts and having well-meaning parents at work ask me if it was a boy or a girl.  I was picturing asking a friend to take pictures of our baby after birth, having a funeral, and saying goodbye only hours or days after birth.

We often want to make a connection with someone experiencing something hard because we want to help; we want to get down beside them in their huddled position on the ground and say, I have been there too, I understand.  But sometimes we haven't.  And sometimes all we have is, I am so very sorry.  And saying that we don't know what to say is better than anything else.

Some of the best, most comforting things that were said to me came from my boss.  I can't even remember what she said entirely, but I felt better after talking to her.  She told me I wasn't crazy for spending an hour that day working on my baby registry.  She told me that no matter what happened, I was still a mom.  She told me that I wasn't crazy to risk my health for my baby because mothers do anything for their children.  She told me to enjoy being pregnant.

The day of the diagnosis I asked Brice if he thought it was wrong to pray for a miscarriage.  He told me he thought we should pray for a safe outcome.  I did find myself at first wishing for a miscarriage.  And then that night not wishing for it because I wanted to hold my baby.  I wasn't sure what I wanted other than to go back in time to the day before when I thought everything would be fine.

And when I did see that there wasn't a heartbeat?  I held onto the Rosary beads--the ones I had hung from the door that would be his nursery, that I planned to let him play with, that we had used to pray our daily Rosary for the miracle of his healing--and I smiled at the screen and thought that he was cute.  And I was relieved because I worried he would be in pain as he grew and after he was born (if he was).  It wasn't the way another mother feels when she sees no heartbeat.  It was different for us to see no heartbeat because we already knew that our time with him would be short.

I feel guilty for feeling some relief--how much of my relief was for him and how much was for me?

I actually didn't cry that night, or the next morning.  We had already grieved for two weeks at that point.  It wasn't until the next night after a day of extremely unhelpful medical personnel that I lost it.  And I'm not sure over what.  My frustration with people that day somewhat.  Partly because of the loss.  Partly because of the way my whole world was forever changed in these last few weeks and now it was all supposed to be over and go back to normal.

Yes, it was a pregnancy loss.  But I'm not sure I'll ever feel as though I entirely fit into the "miscarriage" box.

4 comments:

  1. I'm sorry if I ever said anything to that effect. I try to focus on the fact that every pregnancy loss is different - even if the circumstances were exactly the same (which is very rare), the feelings are always unique to each parent. The medical world tends to label pregnancy loss before 20 weeks (or I've sometimes before 26 weeks) as miscarriage, and I think you're right in that they lump together some very obvious separate groups. Some people have warning like you did, and some don't (but maybe some of them that don't would if they had early enough ultrasounds?). I'm sure the people who compared it to miscarriage (again, sorry if I was one of them) don't mean any harm and I too was kind of hurt by many women saying that their really early miscarriages marked only by a later and heavier than usual period, were similar to mine, even though I had six weeks of knowing I was pregnant and planning for it, etc. But I'm starting to realize that there is a great bond between women who have lost a child (at any age, including many years after birth) and that I can now see past the differences to the same pain of missing a child. And I can relate better to women that had a "miscarriage" in any situation than I can to someone who hasn't at all, if that makes sense? You might find it easier to handle the comparisons once it's not so raw. (What I can't stand and probably never will be able to though is people saying, "I know what you must be feeling because of X" with X being something other than losing a child - the possibility of losing a child is not the same as actually losing one and you don't actually know those emotions until it happens, even though you imagined what you would feel like, or losing a grandmother, or infertility [while also a difficult cross, it's not the same, and I would never suggest to someone that was suffering infertility that I remotely understood the feelings what they were going through.])

    I don't think there is much of a voice for women in your situation (I've read many books with women telling their pregnancy loss stories and I didn't really come across any) and it's so great that you are speaking out. Your posts have been really powerful.

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    1. Oh no, Mandi--you never said anything that made me think you thought we were just another miscarriage. I actually thought you were being careful of it. I understand that people had the best intentions and I made sure to not hold what people said against them. I figured their hearts were in the right place. Not everyone was brave enough to say anything in the first place, or they just felt it better not to, so I figured anyone sitting with me or trying to comfort me should be given credit for that.

      I also think you're very right about the bond between mothers who have lost. I definitely feel like you and I connect on something very real, and the same with anyone else with a similar story.

      Thanks for reading :-)

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  2. you can fit into any box you wish, or none at all. labels and boxes are helpful in that they explain things for people who may be confused, or need the connection of others like them. In other cases, they serve to divide. You are writing about this pregnancy and child so eloquently, though, that it must be (and I hope it is) therapeutic for you. Sending continued prayers.

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