EDIT 9/14/11 – First thing:  I see a lot of search engine terms for things like “CDH stories” and “CDH blogs” for people who have landed on this story.  It makes me sad because I know exactly where most of these people are – they are just finding out that their unborn child has a congenital diaphragmatic hernia, and they are hoping to find some good outcomes to soothe their nerves.  I was so hoping that one day, when all of this was over, Benjamin’s story would be able to provide you with that hesitant sense of relief that the “good” stories gave me in the very beginning. 

This is not a “good” story.  Benjamin is still here, alive and inside of me…but there are severe, underlying, irreversible, chromosomal conditions that will inevitably prevent this from being a “good” story.  It’s much worse than a cautionary tale; it’s a true and very sad story.  And as Benjamin’s parents, trust me – nobody wants to hope for things to be different than expected more than we do.  Trust me.  It’s just…not the case here.  It’s not *just* a severe CDH.

I still hope, however, that this can help you with the decisions you may or may not have to make as parents, depending on your son or daughter’s specific situation.  All I can do to help you at this point is tell you to be thorough, trust your instincts, and find a doctor (from the beginning) that you fully trust and love.  If you do all of these things, you will be as sure as we are that there was nothing more we could have done.

We are all still here, I am still pregnant, and Benjamin is still kicking – but only at night.  We had appointments at CHOP yesterday to check the fluid, talk about plans, meet with the psychologist, etc.  Fluid is up (slightly), but my body is no more ready for induction than it was a week ago.  They would have given me the option but…why would we want to hurry up and get to what will always be the worst possible moment in our lives?  And he is still moving, still kicking.  He’s comfortable and I love knowing that he’s there and okay.

I’m reading an incredible book that the genetic doctor gave me yesterday.  Dr. K met us for the first time when she walked in the delivery room, canceled the induction, and gave us the most devastating news in this whole process:  that his chromosomal abnormality changed absolutely everything when it came to treatment options.

Surprisingly, after that, I really like Dr. K.  She seems to be hurting over this too.  I don’t think it’s in her nature to say, “There’s nothing we can do.”  And yet…there it is.

Back to the book.  It’s called An Exact Replica of a Figment of My Imagination by Elizabeth McCracken.  I was up very late last night reading it and identifying with her story.  It’s a little bit different; her child passed away in utero at ~41 weeks.  There was no indication that anything was wrong.  It was an umbilical cord accident.  But still, she had an entire pregnancy thinking that all was fine, she was making the right steps…and then something totally and completely out of her control changed everything.  I’m not exactly recommending this book in general because obviously, it doesn’t have a happy ending.  It’s not a feel-good book.  For me, it’s like reading a book that I haven’t written, but almost could have.

She did go on to have another child, but she battles with a dilemma I’ve already been worrying about:  How will I respond, from now on, when somebody asks if I have any children?  It’s always the second question when having your nails done:  1) You have boyfriend?  2) You have children?  And it’s not just in those situations.  As a woman, it’s like the mandatory starting point for small talk.

How do I answer?  Do I say no, and deny to them and to myself that Benjamin ever happened?  Or will I say yes and risk them asking how old he is?  Then explain the circumstances, which cannot be summarized, and make them regret asking such an innocent, seemingly safe question?

Another thing that Dr. K helped us with was identifying what makes this type of grieving feel so different.  Right now, we are grieving as individuals, as spouses, and as parents – which is a brand new role for us.  It’s compounded by the fact that this is a strange pre-grieving stage.  Once “everything happens,” which is the only way we can think to refer to…what’s happening…we will be starting that “layered grieving” process over again – but it will no longer be pre-grieving.  This is just the practice round.

And the “Announcement”…

In preparation for what is sure to be a very long and painful process, we have decided to move back to Arizona in late October/early November.  The truth is, Charlottesville will always be the place Benjamin is supposed to be, but isn’t.  There were so many places we couldn’t wait to take him, seasons we couldn’t wait to watch him experience.  And even the author of the book I’m reading was living in Paris when she and her husband lost their son.  She said that France was ruined for them, and they would never, ever go back.  She related with an Italian woman who had lost her son to SIDS in Massachussetts, and she said she realized that all of America had been ruined for her.  It’s just the fallout of losing your baby.  It’s just a part of the whole package.

It’s not an irrational decision.  It’s not even that we are running away from this.  In fact, we are running to a fantastic support system…which can only bring good things.

Speaking of support systems, you all have been amazingly supportive.  As strange as it may sound, it’s comforting to know that others are hurting for Benjamin with us.  Because he is truly our whole world, it feels like the whole world should stop and grieve for him.  So, thank you for doing that with us.  Along with all the other things I can’t explain, I can’t tell you how much it helps.

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