Just sad.

So this article was published last week. Ever since I've read it, I've felt nothing but guilt and sadness. Trying to not beat myself up. Trying to be okay with our decision. Knowing that this situation wouldn't have happened to me in March, even if I had went with a second opinion. I have to remember I was offered a second opinion to ensure they were reading the ultrasound right. Not to see what else could be done. The diagnosis for us was fatal. But it stings. And then I think, "Jennifer. Stop being so shitty. Start being happy for this couple. Stop being jealous that she got to go to John Hopkins and tried an experimental procedure. Just STOP IT!"  .....and then I do. ....and then it slowly starts up again.

Here's the article: Baby Survives Potters Sequence

*Note-I should add that I hate that they're calling it Potter's Sequence. The baby's condition was Bilateral Renal Agenesis (BRA). That is what she is surviving. Potter's Sequence is an old term that's used to describe the physical appearance of babies that have low amniotic fluid (Oligohydramnios). In this situation I would say it's probably more accurate to assume that this baby did not have Oligohydramnios, and therefore did not have Potters Sequence (or at least they reversed it), as the mother was getting the faux fluid. But it is a crazy scientific development that this baby is surviving BRA outside the womb. I don't know. I'm not a doctor. 

Anyway, James has his renal ultrasound this week to find out if he has 2 kidneys or 1. This will solidify what our chances of recurrence are, depending on how many his has cooking up urine.

When does this nightmare end? I guess it doesn't. Because I haven't woken up in 4 and 1/2 months.

I need another word for sad.

I feel like I've just  been walking through the grief-haze for the last week. That haze where you can't remember 3 seconds ago what you said or what you were doing. But somehow you're still semi-functioning. I think I owe it all to Lorazepam. Well...probably not all of it.

Yesterday was another terrible day for me. I had to leave work. This is the 2nd day this week I haven't been able to keep it together. I am so profoundly sad. The depth of it is infinite. It's as though there's an empty hole going straight through my chest that is filling with sadness. But instead of the hole opening up to the other side into my back, it never makes it there. It just grows deeper somehow. And there's no relief. I feel as though it's going to fill my entire body and soon I'll be drowning in it. A deep, dark sadness.

I feel like maybe if I say, "I miss her" over and over again to you, that you'll understand how much I do miss her.I miss her, I miss her, I miss her, I miss her, I miss her....is it easier to understand now? Probably not, but I don't know how else to describe what I am feeling for my child. For Astrid. That's where this empty hole in my chest is coming from . Because I don't have her to hold and love, I'm not complete. There's a movie coming out that spotlights child loss and it's called Return to Zero. There tagline is 3-1=0. That equation seems so right for this situation.

The quietness in the house is haunting me. It's so still this morning just like the still sadness inside me. I miss Astrid so incredibly much. If you could only know how much I long to hold her in my arms just one more time. Even if it wasn't forever...just once more.

Me vs You

I'm back. I need to stay back too. This is where I belong. I can't keep all these thoughts to myself. I want them written down for others to stumble upon. I want them written down so I don't forget my pain.

I've been sitting here with an aching heart this morning. We're less than two weeks away from Astrid's due date. That date is haunting me this month. I'm sitting here with this cloud of grief around me, wondering what it would have been like had everything gone according to plan. Would I have been miserable and ready to just have the baby already? Would I have been elated just waiting to meet my child? Would the nursery have come together as planned? What would the rest of my pregnancy been like? My heart just breaks right now because I was supposed to know the answers to all of those questions. Instead I know the answers to questions like: What if something goes terribly wrong with this pregnancy? What if my baby has a condition that's incompatible with life?

My reality now is a pill that's almost impossible to swallow.

I should probably update those of you that pop in here to read and check in on us. We found out that Astrid did not have any type of syndrome associated with the bilateral renal agenesis. She was a healthy normal baby, except she had no kidneys and no bladder. The geneticist said they have about 1500 births in their hospital a year and they see this happen once every 3 to 4 years. We won the shittiest lottery in the world. The next step is to find out if James has both of his kidneys. If he has both kidneys, there is a 4-9% chance we'll experience this again. If he has one, there is a 10-15% chance it will happen again. Although I'm relieved that there is no syndrome associated with her condition, the rest of the information provides little comfort.

Some other things that have occured to me as of late are the differences between myself and those around me. Before I rant about this next part, please know that when I say "you", I'm not referring to the other baby-loss mamas that might be reading this. My rant starts now:

Me: It's only been 4 months.
You: 4 months is an eternity ago.

You: You must not be grieving. I saw you smile and laugh yesterday
Me: Don't let smiles and moments of happiness fool you. You can't see my heart.

Me: I think about my baby every. single. day.
You: You don't even remember that I was pregnant.

You: If you're having a hard time now, it must mean you're going backwards.
Me: When I'm having a hard time it's because I don't have the strength to go on ignoring my pain. Part of having a hard time and letting myself feel my grief and pain means that I'm healing.

I just have this feeling that my friends that don't know loss and don't know grief are thinking that I'm milking this. I just want to scream some times, "I HELD MY DEAD BABY IN MY ARMS. CAN YOU EVEN IMAGINE WHAT THAT'S LIKE????" But to them, it shouldn't be that hard...it's not like I knew this baby. It's not like the baby took a breath. It's not like the baby ever loved me back.

....Yet, maybe it's not what they're thinking. Maybe it's just what I assume they're thinking. Maybe it's what I'm subconsciously thinking? Maybe deep down I'm being hard on me and think I should be over this. Maybe this isn't Me vs. You. Maybe this is Me vs. Me.

I'm so sad. This is so hard. I miss her.

Astrid's Birth Announcement

Our photographer made a birth announcement for us. I just saw it at 12:30am. Now I can't sleep. Love her and miss her...

Sunset

I realized that in my absence that I completely forgot to post the beautiful sunset photo of Astrid that was drawn and photographed by Carly Marie at The Seashore of Remembrance. Here it is..

Mother's Day

The week leading up to Mother's Day was a rough one. So many reminders of what I don't get to be and don't get to do. It's strange how some days I can listen to people talk about their kids, and I'm not phased. Other days, it's torture. Last week was all torture. There were some things that helped though. Flowers from my in-laws. A rose bush from my parents. A sweet baby kitten from my step-daughter. These things just said to me that these people loved me, they thought of me, they acknowledged my pain. The day itself though was good, as I had the healing powers of tiny kitten feet running throughout the house distracting me.

Coworkers that were pregnant continue to be pregnant--as they should be. As I see their baby-bumps growing, I wonder what I would have looked like. If I would be glowing as they are. I wonder if I would have been filling out my maternity clothes that I had bought. I see them in their bliss and feel like I'm suffocating. I feel like that feeling may never go away. And it feels horrible to have that kind of feeling because of someone else's happiness.

It's interesting to me though who was willing to recognize that Mother's Day was going to be so difficult, who wouldn't acknowledge it at all, and who didn't even think of  it. Of course my parents did. They are grieving for me and for themselves through this process, so it only makes sense that they knew this would be tough. Though I do wonder if they know that every mother's day without Astrid is going to be difficult, not just this first one. My surprise acknowledgement came from a guy that used to work on my team that became a friend. He sent me the following in a text message that afternoon:
"I don't mean this to make you any sadder than you may already be. But happy mothers day. You are a great mom to [step-daughter] I can tell. And you help some of us out too. So thank you."
I was shocked. And felt so at peace reading it. There's so much fear that saying something is going to make us grieving mom's sad. And yes, I may tear up when it's acknowledged, but it's not because things are being made worse. It's not because I forgot that my baby died, and you just reminded me of it. I tear up because you might be one of the few people in my life who isn't afraid to say something.

Mother's Day Flowers

Rose Bush

Meet: 7 of 9! Or just "Seven" for short. It's a Star Trek thing.

And another thing...

I want to put a fucking sign around my neck that just simply says, "She has a name..."
No one wants to acknowledge that I gave birth to a baby. At 21 weeks. And she's no longer alive. I held her. I loved her. I gave her a name. I didn't just "lose a pregnancy." I didn't have a miscarriage. I had a baby. I had a daughter. She has a name.