This thing you call god

I'll be the first to admit that my relationship with god, or the idea of a god, has been pretty shaky since Cayden was born and died. But this morning's devastating news has pretty much solidified my feelings. Don't get me wrong, I was never the type to believe that god meddled in individual lives, never really prayed for specific things for me, but at one point I had some sense that there was a larger picture and perhaps this thing called god was in control. I've never done well with comments like, "God chose you to be Cayden's parents" or "God meant for this to happen" or "God has a plan for you". They're not comforting to me and they just don't jive with my experience.


What the hell am I talking about? I'm talking about this. Mirne and Craig just lost their third beautiful baby, Jet. Don't tell me there's a god, don't tell me this was meant to be. I am heartbroken for these wonderful people who are living in a hell I cannot fathom. I am crying for them and for Freyja, Kees, and Jet.


Please don't comment here. Instead, I wish you'd visit Mirne and Craig and tell them how sorry you are that they've lost three babies, how you wish this nightmare was just that. And I'm comfortable that others have different views of god, but I'm in no mood to hear them today.

Ezra Malik

This weekend I'm thinking deeply of my dear friend Sarah, her husband David, and their beautiful baby boy Ezra. Sarah has taught me so much on this journey and I am grateful each day to have her in my life. While I wish I could be with them as they unveil Ezra's headstone, I will say kaddish for their beautiful boy tomorrow and remember him always.

Buggy

Last night Scott told me that a ladybug landed on his leg while he was sitting on the couch. I'm taking this as a sign that it's time to finally announce that we are growing Cayden's little brother, affectionately known as Buggy.

Lev River

Tonight I'm thinking of Aliza and Arik and their beautiful baby boy, Lev River, who should be sticky and sweet and covered with his first birthday cake tonight. I wish he were with his parents in their arms, and I'm holding him close in my heart.

Hope

Tonight I'm remembering Hope. The 19th is her first birthday and since her mum and dad live in Australia, it's already the 19th there.

Hope's mum Sally has been an incredible support to me and while I wish we'd never met this way, I am so glad to have her as a dear friend. Much love to them as they miss their baby girl.

Love

Yesterday I visited a very special girl in a beautiful place and was reminded that all you need is love.

Perspective Shift

Last Friday I was watching the movie "Knocked Up", one of our favorites and frequently on HBO these days. This post is about one of the last scenes, in which the main character Alison is in labor, attempting a drug-free birth, when the baby starts having decelerations of the heart rate. The doctor thinks the cord may be wrapped around the neck and the following conversation transpires (I've edited, for the sake of brevity. Feel free to skip this part if you remember the movie.):

DR. KUNI: We’re good. The heartbeat’s stronger,but we’re not out of the woods. We need to get things going now. I think the cord is wrapped around the neck.

BEN: What?

DR. KUNI: So I’m going to give you some medicine, pop the bag and get things going, okay? I don’t want to leave the baby in there for long and we can give you some medicine for the pain.

ALISON: No, no, no, no. I don’t want the baby to be born all drugged out. It’s not my birth plan.

DR. KUNI: Now, things change. We don’t have time to debate this.

ALISON: What? No. But no, I’m not comfortable with that. I’m not.

BEN: No. Would you please just listen to her?

DR. KUNI: Fine. Do what you want to do. Should I leave? Do you want to be the doctor? Because I really don’t need to be here.

BEN: No. What we want is to take a second to talk about our options, okay? That’s all we want.

DR. KUNI: No. You mean you want to take a second to tell me how to do my job. My job is to get that baby out safely. Or I can go home! You just let me know. You be the doctor.

At this point, Ben and Dr. Kuni go into the hallway to talk.

BEN: Look, she’s just having a hard time because her and her doctor had a very specific birth plan. And they wanted it to be a very special experience.

DR. KUNI: Okay. if you want a special experience, go to a Jimmy Buffet concert. We have a new birth plan: Get the baby out safely.

They agree to start fresh and return to the room. After Dr. Kuni explains that he wants to break her water and give her some medicine to speed things up because he doesn't want to risk an infection, Alison replies: "Whatever. Do what you have to do." Dr. Kuni leaves and Alison says, " Oh my God. What a nightmare that guy is."


When I first saw this movie in the theater, I remember agreeing with Alison. I'd wanted a drug-free birth (I don't love the term 'natural' birth, but I mean the same thing), we'd interviewed a doula, and I cared a whole heck of a lot about my birth experience. I thought Dr. Kuni was an asshole and I chose to be seen at a women's clinic primarily staffed by midwives known for encouraging low intervention births.

When I saw the movie again last Friday, I nearly threw a glass at the television. This selfish bitch, whose baby is possibly in danger, throws a tantrum because her precious plan has changed focus from a "very special experience" to getting the baby out safely. How could she argue with getting her baby out safely? She calls the doctor whose sole concern is the safety of her child a "nightmare". She's worried about having a "drugged out" baby. How about worrying about having a dead baby?

This got me thinking about how I ever felt differently than I did last Friday and I think it comes down to this. Babies dying was not part of my schema when I first saw "Knocked Up". I assumed that 9 months = a healthy baby. I now know that is far from true. And it terrifies me. I don't really get jealous or sad when I see pregnant women these days, I'm scared as hell for them since I know that babies die. A lot of babies die for many different reasons. Too many babies. I bet that thought had never entered lovely Alison's mind. Afterall, it was only after I met so many mamas who had lost their babies that I actually looked up and discovered that my Mayo Clinic pregnancy guide had a brief section on stillbirth and neonatal loss. I'd skipped over that part, because, well, it couldn't happen to me, right?

The Weight on My Shoulders

S., a friend who knows grief and loss and healing, sent me the beautiful words below.

When you first begin healing, it is like you've been handed a huge boulder you must carry. The boulder is heavy, and it hurts to carry. You always feel burdened by it. It's always scratching you and hurting your hands and shoulders. Even when you're doing other things, that boulder is always on your mind; you can't just leave it at home. You're always thinking about it.

But, gradually, as you carry that boulder around, it erodes and becomes smaller. It becomes easier to carry, less burdensome. It's still painful and frustrating, but you can focus on other things too. The boulder keeps getting smaller and smaller, as time passes, you work through therapy, talk to other survivors, and tell your story.

Eventually the huge boulder is no bigger than a pebble. It will never go away, but at this size, you can put it your pocket. Every once in awhile you feel it, but the pain is manageable. It's still part of you, but it doesn't define you. You can take it out when you need to, to look at it and remember, but you can also keep it hidden from view. You've taken a huge, rocky boulder and turned into a small, smooth stone. You have reclaimed your life.

On this six month anniversary of Cayden's death, I've been thinking about these words. My grief is not a boulder, but neither is it a pebble. Oh, there are days when my back and shoulders are rubbed raw and bleed as I struggle to carry the boulder. I hate those days. Most days, though, it's a large and heavy rock. The kind of rock that makes your arms ache and that you can carry only for a few feet, before you must release it to the ground, for fear of dropping it and breaking a foot. I know by now that grief is a personal path, but I must admit that I'm curious to know when my grief will become something I can put in my pocket. That time feels so far away. Just like my boy.

How is it possible?

Cayden, six months ago today this was me and this was you. So excited to meet my Sprout for the first time, so worried about your early arrival, so thankful for your excellent care. It feels like yesterday and a lifetime ago. We love you and miss you little boy.

There will be an answer, let it be.

Berlin has completed Cayden’s genetic testing for Multiple Pterygium Syndrome and no mutations were found in any of the five genes tested. What does this mean? Best we can tell, Cayden did not have Multiple Pterygium Syndrome but most likely died from Pena-Shokeir. Pena-Shokeir is not a disease but a phenotype, a cluster of symptoms resulting from decreased movement in utero. There is no genetic test for Pena-Shokeir. Studies suggest that some cases are sporadic and are some are autosomal recessive; we will never know whether Cayden’s case was sporadic or recessive.

There is some relief in having closure with Cayden’s testing. All we can do now is hope that Cayden’s case was sporadic and that it’s something we’ll never have to worry about again, however naive that hope may be. But we also can't forget that, as Angie so perfectly put it, "the world is a random, chaotic shitstorm, and sometimes you get caught in the eye of it."