I Know Exactly How You Feel

My twins were born April 19, 2011, so they are four months old as I write this. They were born six weeks early and we spent three weeks in the NICU before we were able to come home. I think those were close to the hardest three weeks of my life. There have been a couple of other moments with my oldest son that were as hard, but those are stories for another day.

After the first week I felt pretty confident that they would survive.  But I still had to go home without my babies every night and that was heartbreaking.

I see-sawed between feeling completely absorbed in my babies, my fears, my sadness and then on the other hand feeling so lucky and grateful that we weren’t nearly as bad off as many of the other babies in the NICU, which in turn made me feel guilty about being so self-absorbed.

We survived those three weeks and the next three weeks, when I was paranoid about everything and unwilling to let even family members other than Grandma come over to see the boys. It was really stressful. I’m not sure stressful covers it, but we got through it.

Now the boys are growing and doing the things that babies of their adjusted age do. They are still very small even for their adjusted age, but they are perfectly formed little babies.

So I get really, really annoyed when people make comments to me that are probably well-meaning but are hurtful and invalidating to me.

“Oh, they were only 6 weeks early? That’s not bad for twins.”

It is bad. It is not good to have your baby born a month and a half early. We were very, very lucky that I was able to get steroid shots the week before and that the boys didn’t have breathing problems, so please don’t tell me it’s not a big deal for them to be six weeks early.

“At least you didn’t have them at X weeks.”

I’m very glad we were able to hold out until 34 weeks, but this isn’t a competition.

“Wow, they were 3.5 and 4 pounds when they were born? That’s a pretty good size for twins.”

Nope. It’s not. When we’re talking about weights in terms of a few pounds, a pound is a big deal. The average weight of a full term newborn is 7.5 pounds. Three and a half pounds is less than half of that. Four pounds is just over half of that. The average weight of a twin is 5.5 pounds. A 3.5 pound baby is is only 60% of the weight of an average twin, and remember that many twins are born early, so the average is low because it includes the micro-preemies. The average weight for a full term baby also includes micro-preemie weights, but there are far fewer of them. Our babies were in the category of premature, growth restricted, low birth weight, with my little guy on the cusp of very low birth weight. This puts them both at increased risk for all kinds of problems in the future. This especially true for my little Roland.

“They’re growing fine. They’re not that small.”

Yes they are. Again, it’s not a competition but it is a fact that they are very small for both their chronological and adjusted ages. Should I just agree with you and say, “oh, right, they aren’t small at all, my mistake”? I don’t get that. Are you trying to make me feel better? I’m ok with them being small. Small and healthy is just fine. I don’t know what the future holds though. Will they have developmental delays? Will they have physical problems that will emerge as they get older? I don’t know. I don’t focus on it, but it’s definitely in the back of my mind.

“I know exactly how you feel. My sister/friend/aunt had her baby at 24/28/32 weeks and he was only 1/3/4.5 pounds when he was born.”

No, actually, you don’t know how I feel. Unless you’ve been through this experience you really do not know what it’s like. And even though I know what it’s like to endure the stress and fear of having your babies in NICU, I do NOT know what it’s like to have them there for months, or to have to see your baby on a breathing machine, or have to deal with your tiny baby having multiple surgeries. I’m not going to pretend I do. I hope I can empathize somewhat, but I won’t claim that I know what it’s like.

People who say this are generally in one of two camps. The first is the person who is really trying to find something similar in their life experience that they can share with me and make a connection with me. I do appreciate that. I know it’s an expression of empathy.

For others, it seems to be some kind of one-upmanship game. My baby was born at 34 weeks, your friend’s was born at 28. My baby was 3.5 pounds, your sister’s was 2.8.  I’m not sure how to describe it because it’s late and my ability to write coherently is fading fast. But I definitely feel it when someone wants me to know that they had it worse and that I should feel lucky.

Well, I do feel lucky. I know I am very, very lucky that I got to come home with two apparently healthy, perfect little babies. I know and feel deeply in my heart for those who had and have much more difficult obstacles to overcome.

But please, please don’t invalidate what we went through. I know, oh Lord I KNOW it could have been so much worse and I am truly grateful for what we have. But let me grieve for what we lost too, even if it seems inconsequential to you.

That’s my story and I’m stickin’ to it.

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Posted on August 17, 2011, in A piece of my soul. Bookmark the permalink. 2 Comments.

  1. I couldn’t even imagine how terrifying that must have been. I think people just don’t understand what being sympathetic is…ya know instead of shoving the whole “Well it could have been worse” down our throats.
    For me it came when I was going through the worst of my diagnosis o bipolar disorder and I ha suicidal thoughts..I called a friend for help and she said “Well I’m depressed too. I think my hair is falling out. Gah that’s so depressing”…or “But you have such a wonderful family.”…like shut up. Why can’t people just be there for support without saying such silly things.

    • Truly they just don’t know better. I do try to be really understanding of people’s well-meaning if clumsy attempts to empathize. I am 100% certain I have fumbled, bumbled and mumbled entirely inappropriate things a few times in my life. 🙂 The ones that get to me are the weird comparison ones that seemed *designed* to make me feel shame for my own feelings. I am aware that this is my problem and not theirs. All that money spent in therapy has taught me that!

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