In the week between knowing that Benjamin wasn’t going to make it and his passing, I read a lot about the grief that comes with losing your child.  I read that the pain doesn’t go away; you just get used to it.  Being in that weird place before losing him, that terrified me.  What an awful feeling to have by your side for the rest of your life.

I found that waiting for him to die was much worse than healing from his death.  I don’t know if that’s normal.  There are people who find out that their child won’t make it months before he or she is born, and we were cramming months worth of coming to terms with it inside of just over a week.  So maybe that’s what made it different.  I don’t really know.

Yesterday, I spoke with a woman who lost her daughter to CDH 12 years ago, here in Charlottesville.  Her twelfth birthday would be November 2nd.  I asked her what it felt like after 12 years have gone by, if she is where she thought she’d be emotionally and mentally.  She said that losing your child is like losing a limb.  It’s always missing, it’s always noticeable, but you still manage to function in other ways.  It becomes the new “normal.”

What I’m learning is that yes, it still hurts…but it’s the new “normal.”

The new “normal” is realizing, every morning when you wake up, that you’ve outlived your own child.

The new “normal” is knowing that every step you take, decision you make, and thing you do…you’re taking them, making them, doing it without him.

The new “normal” is getting a good night’s sleep, and feeling guilty because you should have been up all night with a baby.

The new “normal” is having the night he was was born play over and over again in your mind, and sometimes not being able to stop it from starting over again.  And sometimes it’s not just the good parts, such as him being alive.  Sometimes it’s watching the neonatologist search gently and thoroughly for a heartbeat, while my own heart is beating out of my chest waiting for him to confirm what I already know, but do not want to hear.  Sometimes it’s the look in my husband’s eyes as he’s walking out of the room to tell our family that he was born and is already gone, but he stops to look back at me one last time before this news is shared with anyone else.  His eyes were so blue and full of tears, and I don’t ever think I’ll be able to vocalize the conversation we had because there were no words.  The closest I can come is, “I love you.  I’m sorry.  Thank you for him.  This isn’t right.  This isn’t fair.  This is the way it is.  I hate that it’s this way.  This is the moment we’ve been agonizing over…this moment is here, we’re in it.  I love you, I love you, I love you…please let that be enough to take some of this pain away from you.”  He’s looking at me, and on one hand, I’m holding our beautiful, brave son.  On the other hand, it’s only his body I’m holding.  We are brand new, heartbroken parents.

The new “normal” is asking God why he didn’t stop this from happening, if He’s even there at all, and in the same breath begging Him to take good care of my son.  Because I have to believe that Benjamin is somewhere better than here.

The new “normal” is not knowing if and when I’ll find my way back to the relationship I used to have with God.  It’s not that I’m angry…  …okay, that’s a lie.  I am angry.  I feel betrayed by Him.  It’s not that I think He did this, but I He didn’t stop it, either.  And I want to know why.  And regardless of where my faith lands in the end, both of us will have some explaining to do when my time here is over.

The new “normal” (and this literally just happened, during the writing of this post) is having a stranger ask why we’ve been married so long, but don’t have any children. Having him push the issue, looking him in the eye, and saying, “We just lost our child.”  Being irritated that he pushed the issue, then realizing that it’s not his fault.  He wasn’t looking for that.  He wasn’t trying to make me cry.

The new “normal” is watching the leaves fall, the puffs from a dandelion blow by, the golden sky at sunset and wondering if it’s Benjamin trying to make his mom smile.  Have these things always been quite so beautiful?  Is it just me wanting some kind of proof that he’s with us in some way?

I’m sorry that this post isn’t uplifting and good in some way, even just a little bit.  It’s sad and frustrated, because that’s where I am today.  Tomorrow might be different; it might not.

The new “normal” is not knowing what kind of day tomorrow is going to be.