Thursday, June 19, 2014

I don't even have a title for this one...

A couple of weeks ago, I requested a perinatal hospice kit from Sufficient Grace Ministries, and asked to be a part of their Facebook support group.  From the infant death group I was referred to a carrying to term group, and it was there, after I introduced myself, that one of the admin from a group dedicated specifically to continuing pregnancies with LBWC contacted me and invited me to join her group.  (The admin is Sarah Marie, of She Brings Joy and also the informational page LimbBodyWallComplex.net; both of which I have linked here.)

It's a small group, but still larger than I expected.  I suppose it makes sense, though.  If there were 3,952,937 births in 2012, then there were perhaps 282 - 395 babies born with LBWC that year (though it's a rough estimate, since I don't know how stillbirths are worked into the birth rate, or whether they are at all).

The good news, of course, is that I have found a community of people who know exactly what I am going through.  Every one of us is dealing or has dealt with the exact same thing.  I can ask them the questions I couldn't ask anywhere else, and know they will have a good answer.  I was able to read back through old posts and get a better idea of how long people carry (one carried to 36 weeks and another to 38, though earlier births by far are still the norm).  I was able, through photos and replies, to know I can make the baby something to wear; his/her omphalocele shouldn't prevent clothing.

The bad news isn't really bad news.  It just is.  Sharing the journey means sharing the entire journey, and there is simply no happy ending to be had.

This was brought home again yesterday, when one of the members (who seemed to be the only one other than me still pregnant) posted pictures of her little angel.

I actually added her blog just a few days ago.  She has posted about her tiny one here, photos and all.  I am heart-broken for her.  The baby is beautiful, and tiny, and in another world she would be taking him/her home, but not this one.

She knows how I will feel; I will know how she feels.  It's a broken sisterhood, but I am thankful for it all the same.

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