Her liver is outside her body

Today I found myself doing a strange thing.

Every Tuesday I go to a baby and mommy barre class.  It has been really great for me to get out of the house and exercise instead of going to a doctor’s appointment.  It has really uplifted my mood and slowly and steadily I am starting to get stronger after a sedentary pregnancy and a tough month post partum with Isabelle in the hospital.

But I digress.

In barre class today Isabelle decided to be awake after 6 weeks of sleeping through the class.  It was the first time any of the ladies in the class, all who I don’t know, have seen Isabelle.  Of course this resulted in a lot of cooing and interest.  Mummies of babies love other babies.  I started chatting with a couple of the mommies and I blurted out “her liver is outside her body”.  No actually I first mentioned that Izzy is really underweight and then I told them about the liver.  Credit to those mommies who didn’t flinch but I’m not sure why I felt the need to do that.  “Hi how are you? Cute baby” “her liver is outside her body”.  What’s wrong with me? I don’t know why I feel the need to explain, since the omph now is flat enough that it is hardly hardly noticeable under clothes.

  I’m looking fine aren’t I mummy? Mochi thinks so.

Anyway as I look back I think maybe I almost always talk about Isabelle that way.  I am not sure how healthy this is.  Little Izzy is more than her omph, I know that, I see that.  But for some reason to others that’s how I introduce her.  “Hi this is Isabelle, her liver is outside her body”.  Does this mean I am somehow enjoying the attention of Izzy’s condition? Or is it because day in and day out we take care of her condition? One of my earliest posts was about how I worried that I wouldn’t be able to see past Izzy’s omphalocele.  I think all in all I have done a fairly good job, but I’m not doing that good of a job when it comes to meeting new people, or even with our friends.

This for sure is something I need to work on.  Right now Izzy is too young to hear my blubbering “her liver is outside her body!” And hopefully after her surgery I won’t blurt “hi this is Isabelle, her liver used to be outside her body.  Want to see her scar?” I also want to be able to find a good balance between helping Isabelle be confidant and proud of her unique body but also not so that it defines who she is.  I don’t really want her to introduce herself the way I introduce her.  “Hi I’m Isabelle! Look at my scar!” Hopefully I won’t be a bad influence in that sense.  Lots of months and years to practice yet.  

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4 thoughts on “Her liver is outside her body”

  1. Jess: be easy on yourself! Of course you talk about th omph a lot. It’s a big part of your life right now. I can only imagine the appointments you go to, the special care it takes to care for Isabelle right now and the unknowns around her upcoming surgery. It affects you daily and all of you daily. It won’t always be this way but right now it is. I’d encourage you to give your pelf permission to talk about what you need to talk about with friends and strangers. It’s also nice to know you aren’t alone on your journey. There is a lot to process. Share what you need to right now. It’s ok. I’ve seen you: you are an awesome mom and you see far more than the omph in Isabelle. Take good care
    Tara

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  2. Hi. I’m 20 weeks along with my O baby boy in Montreal and I love your blog. It’s such a source of comfort. I can’t help telling everyone who finds out about my pregnancy about the O. I can tell it’s made a lot of people uncomfortable. Not sure why I feel the need to do this. I think you’re doing a phenomenal job with your beautiful girls. I hope I do half as well as you.

    Tina

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  3. While it’s not quite the same thing, I used to do that with Harper’s hemangioma when she was younger. It’s like it was easier for me to call attention to it first rather than to have someone ask, or worse, ask in a rude way (the “omigod, what happened?!” was a personal favorite). You and Mark have dealt with this whole situation in such a graceful manner, I know you will continue to do so post surgery too!

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