First, thank you to everyone who has reached out to us.  It’s so appreciated – please know that…even if I don’t manage to respond right away.  And those who don’t know what to say…we understand that.  We don’t really know what to say back.  It is impossible to put this feeling into words.

I believe I left off at the part where the induction had been canceled.  A few people have asked why, and I actually have an answer for this.  If my body isn’t ready to deliver and we try to force delivery, it has a higher chance of resulting in a c-section.  Things being as they are, the hospital’s priority is whatever is best for me – and a c-section isn’t it.  They would only move to c-section if I was in danger.

EDIT 9/9/11:  Even if they were willing to induce me, and even though the wait is excruciating…the sooner I deliver him, the sooner his life will be over.  I’m cherishing every single kick (of which there have been many today) because it means he’s still alive.  Labor will come when he is ready, and I’m okay with that.

In the last day and a half, we have said and felt things that nobody can ever really plan for.  There has always been more hope than despair when it came to Ben’s situation.  Even as the picture got bigger and bigger and the medical outlook got worse and worse, there was very little planning for “if Benjamin doesn’t make it.”

It’s human nature to hope.  Even pessimists hope when it comes to life or death of a child.  And I know all about the hope that everyone is feeling because we’ve already walked through that stage.  We’ve been there for the past four weeks.

I can tell you that there is no possibility that the circumstances here are going to magically change.  I can tell you that we don’t really know if we’re going to have an hour, ten minutes, or even one second with our son, alive.  The chromosomal abnormality is the underlying cause for his life-threatening hernia, and ironically, the chromosomal abnormality is exactly the thing that disqualifies him from the procedure needed in order to keep him alive.  And, yes, we could demand that they do the surgeries anyway, but it would be so that he could have more surgeries…and more pain…and then more surgeries.  All for a heart that might beat for a month full of surgeries and pain.  It is no longer a matter of whether or not he can take a breath; it’s can he breathe long enough for the rest of his body to fail?

My hope was that this blog would provide some insight to another parent facing something similar so that they could get ready.  But now I know why a resource like that didn’t exist for me:  It is impossible to tell somebody what it feels like to wait for your baby to be born while waiting for him to die.  These are two life-changing moments and they completely contradict each other and will happen in rapid succession.  It is IMPOSSIBLE to prepare yourself for it, because until you have doctors surrounding the bed where you thought you were going to deliver your baby telling you all the reasons why that child won’t make it, you still have hope.

All I can do to explain what we’re going through is tell you what we’ve been doing and what I’ve been thinking about.  So here goes.

I started looking for an urn last night.  On the website, I had to enter two things in order to narrow my search:  Is it for a person or animal, and how much does that person or animal weigh?  I checked the “Person” box and entered a heartbreaking “5” for the number of pounds.  And that is rounding up, everyone.  (His weight is low because of the chromosomal abnormality.)  It’s so low that the website offered me urns for cat remains, just in case I’d made a mistake.

We looked for an outfit small enough for him because we wanted him to have something to wear.  It’s hard to walk into a baby clothes section right now…even harder to sift through the selection and look for the elusive “premie” size.  And then not find anything and have to find another store.  Then still not find anything, open up the diaper bag that I packed with clothes for him, and determine if the one newborn sleeper I brought is small enough.  I think it is.  And it’s my favorite sleeper that we bought for him.

My appetite is nonexistent, but I’m eating because I know I should.  I’m showering because I know I should.  When we’re at a store, I feel like everybody is looking at us and knows what we’re facing.  But then people are so rude and I’m reminded that nobody else knows.  And because they don’t know, they also don’t care.

I’m afraid of what’s on the other side of all of this.  I’m terrified of the holidays this year, and the years after.  He’s going to be missing from our lives completely, after nine months of imagining the man he would have become.

My faith has been completely rocked and I’m not sure where the pieces are going to land just yet.  Some people become closer to God when things like this happen, some remain the same, some distance themselves, and some lose faith altogether.  I will say that this isn’t bringing me closer to God.  He is the only one who could have stopped this from happening to Benjamin and to us, but didn’t.  I don’t know yet if that anger will subside.

I’ve already decided that I can no longer pursue teaching as a profession because I know I will always be looking for Benjamin, and the year that he will have been eight or nine will be especially heartbreaking.  I don’t know yet what else to do; I’ve wanted to teach since I was ten years old and have never given anything else much thought.

I find myself wishing that we hadn’t chosen such a common name for him.  Or that we hadn’t so closely associated dandelion puffs with him.  Or that I didn’t crave apples and hot wings so much during the pregnancy.  These things will be constant reminders, but hopefully one day it will be easier to handle.

As far as what Eddie is going through right now, I don’t feel like it’s my place to share…and again, I don’t think it can be put into words.  I will say that he and I have both smiled and laughed today, but it catches us off guard and there is a heaviness to his smile that I, again, can’t describe.  When I find that I’m laughing about something, I think…is this okay?  Am I allowed to do this right now?  And I know that if Benjamin could vote one way or the other, he’d say yes – go ahead and laugh.

The biggest part of what we are going through has to do with our heartbreak for Benjamin, the childhood we were so ready to give him, and the life he’ll never have.  I cannot go into more detail about this part of the situation because honestly, it hurts too much right now.  It hurts to think about it, let alone talk and/or type about it.

The next frequently asked question is…where are we?  We are staying in a hotel in Philadelphia close to the hospital.  Waiting for the time to come.

And the biggest concern seems to be:  Is anything happening and I’m just not in the loop?  We’re not keeping things a secret, so please know that when something happens – I promise you, you will know.  Until then, we are waiting – just like you.

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