Day Six: Books

I read a lot; I always have. It’s surprising to me that I haven’t read more babyloss books, but it has never felt quite right. Before Owen was born, I considered reading Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life by Amy Kuebelbeck. It tells the story of parents who chose to carry their pregnancy to term after finding out prenatally that their son had hypoplastic left heart syndrome. I put it in my Amazon cart a few days after we got Owen’s probable HLHS diagnosis, but I couldn’t bring myself to actually go through with the purchase. Kuebelbeck and her husband chose comfort care for Gabriel, and even though Zach and I were heavily leaning toward choosing comfort measures only for Owen, I couldn’t bring myself to purchase a book in preparation. It felt like giving up. Kuebelbeck also wrote A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life is Expected to Be Brief. That book is still sitting in my Amazon cart as well.

I did read a lot of books when I was pregnant, but they were mostly mystery novels and detective stories. I read all of Gillian Flynn’s books, and even though I found them grizzly and just a little too harsh for my taste, they were a fine alternative to contemplating the choice to let my son die.

I’ve mentioned before that I sometimes feel guilty we didn’t demand every possible medical intervention for Owen. To clarify, this is not rational guilt. When I am missing him the most (and this was especially true for the early days), I would think, if we had just demanded surgery, he’d be here now. But I know that even if we had demanded surgery and he was here now, he wouldn’t have had very long with us. Objectively, I know that Owen was too severely affected to live, and forcing long-term ventilation and respiration where there were no lungs would have been painful–more painful than I could accept choosing for Owen. Still, modern medicine tells us to fix, treat, cure. We technically chose the opposite, although I don’t see it that way. To me, we did heal Owen. We chose comfort and love, and then death protected him from any pain. To me, we took on all of this grief so Owen could live peacefully.

loving and letting go

Loving and Letting Go: For parents who decided to turn away from aggressive medical intervention for their critically ill newborn

I ordered this book a few months after Owen died. It, like the others, sat in my cart on-line for weeks before I finally bought it. It was hard for me to conceive of myself as someone who turned away from medical intervention. It’s the only baby loss book I own, but I’m content that it’s the only one I need for now. Maybe someday I’ll read the others, but today I’m satisfied to belong to a group of parents who took on lots and lots of pain so their babies didn’t have to.

Day Four: Now

I had sort of a difficult time choosing my photo for today. One, I don’t have very many pictures of myself since losing Owen. I didn’t like being the subject of any while I was losing the weight I gained while pregnant, and since then, there haven’t been very many opportunities. Most of the pictures I have are selfies I took with the cats…not exactly fitting. I asked Zach if he had taken any, and I found one that I knew was perfect for this particular challenge.

peacock hat

I wrote yesterday about how I was afraid when we first decided to carry Owen to term. I thought if he died, we’d never be happy again. I had read some frightening statistics about the difficulties couples face after losing a child, not to mention the individual struggle. This picture reminds me that my fears have not come true. Zach and I are still together, perhaps stronger in some ways than we were before. More to the point, I’m happy. We’re happy.

In the early days of grief, I would have never imagined this was possible. I knew that we were changed irrevocably and life could never be the same. Lately though, I’ve realized that, yes, we are irrevocably changed and life won’t ever be the same, but that doesn’t preclude joy. The first several months of grieving were (are) brutal. It’s a slow process of learning how to be so very sad while simultaneously leaving the house without breaking down. Using such an overwhelming amount of energy just to get out of bed and dressed means there’s not much attention left to be paid toward happiness. For a long time, simply breathing required so much strength. I couldn’t figure out how we’d ever genuinely laugh again. But now? I’ve learned to integrate my grief and Owen’s memory into my day. It’s not always seamless and required a lot of practice, but someday I’m sure I’ll do it almost effortlessly. I’m already able to belly laugh without regret. I’ve learned that feeling delighted with life doesn’t mean I’ve forgotten him or disrespected him. Loving him and being his mother allows me to feel everything more deeply, including joy. Owen died, but he also lived. I will always find joy in that. I will always find joy.

 

 

Edited to add: A selfie with one of the cats because cute.

cat selfie

Day Three: Before

llamas and me

Who was I before this experience? Before losing Owen, I took a lot of delight in the everyday stuff, and I liked to quest for adventure. Even though life was busy, I did a pretty good job at taking a breath and enjoying the present moment wherever I was. I tried to find the wonder in things around me. For context, this photo was taken the day Zach and I went went with some friends to help shear some alpacas. Admittedly an odd activity for people who don’t routinely engage in animal husbandry, but I had a grand time. I had never seen an alpaca before–interesting creatures, those guys. I was fascinated. Being so carefree and able to make fun wherever I found it is something I loved about myself.

When Zach and I were weighing our options after receiving Owen’s tentative diagnosis, I remember thinking that if we chose to carry the pregnancy to term and he died, we would never be happy again. Aside from his death, that was my biggest fear. I was worried that I would lose the ability to be delighted. I thought life would become the period before Owen when we were able to laugh easily, and then the after-Owen time, when we would be over-burdened by death and missing him. If you had asked me if that fear came true a few months ago, I probably would have said yes. I’m not sure that’s the case now, fortunately. Returning to a joyful state is very much like waking up. I’m groggy and slow to find joy these days, but it’s there. I’m confident that I will fully reawaken someday.

 

 

Day Two: Heart

Owen heart

I took this in August when I was photographing my Baby Loss Before and After and ended up not using it, which I felt sad about because I wanted to show off Owen’s heart. What a perfect opportunity!

Soon after Owen died, I got this heart made by A Heart to Hold. It was made in honor of another lost son and gifted to us, and it weighs 7 pounds, 14 ounces–Owen’s birth weight. I love holding it, especially when I am feeling particularly empty-armed.

Today’s prompt was also inspired by E.E. Cummings poem “i carry your heart with me.” I (attempted) to read this Owen’s memorial service so it is especially near to my heart. Owen is gone from this world, but I carry him every day in my heart and in my mind. I am honored to do it but desperately sad that I must.

Day One: Sunrise

sunrise

“The sun reached out his hand to me and touched my face. And so my healing began.” –Marjorie Pizer

October is Pregnancy and Infant Loss Awareness Month. I was vaguely aware of this prior to losing Owen since I worked in a NICU and talked to a handful of moms there who participated in various events. Now it’s my turn, I guess. I’ve decided to participate in the CarlyMarie Capture Your Grief Photo Challenge.  Hopefully I’ll be able to keep up. I’m already behind by one day, so let’s just pretend I posted this yesterday!

My sunrise photo isn’t quite sunrise. I took it at my clinic after being at work for about an hour, but it’s a wonderful image of the sun coming through a really beautiful tree outside of my window so I’m going with it. Plus, I’m not a get up at sunrise kind of girl.

Sunrise is a time that is dear to me though. When Owen was dying, we were wheeled out of the the NICU (he was in my arms) and into a Labor & Delivery room with a wonderful view outside. The sun was rising over the hospital, and I was so happy that Owen got to experience sunlight. I haven’t been up at sunrise since that time. For the first month after he died, I would set my alarm for 3:08 am (the time of his birth) and go sit with his ashes and meditate on his life, but I never really felt compelled to reawaken at the time of his death. Because I associate Owen’s death with sunrise, I always feel like he is here with me a little more when I feel the sun warming my skin.

Taking Up Space

I was on the way to a doctor’s appointment when I stopped into a local coffee shop to pick up an iced coffee to sip on the way.

The lady in front of me in line seemed to have already finished her order. She had her coffee, but she was still chatting with the barista. They were looking at some pictures on his phone, and that’s when I realized. This is the guy I had heard about from Zach. He and his wife had a baby a few weeks after Owen was born/died. I knew about him because he was proudly showing his brand new son’s pictures off the first week Zach went back to work. Zach had stopped in for coffee to help him get through those first few rough, rough days. What awful timing for both new dads, I had thought at the time. So anyway, now here he was again, showing off his son, and here I was, just wanting my coffee. Another barista came out from the back and noticed me, finally, and called from behind the counter to ask what I wanted. I placed my order, and the chit-chatters finally dispersed so the proud dad could ring up my order. I paid, tipped, and was happy to be getting on my way. I wasn’t running late, but I wasn’t early either, so I was feeling a little pressure to get moving.

I was about to turn away. I was about to be able to avoid this interaction entirely, when all of a sudden, “Wait! I certainly can’t deprive you of pictures of my amazing four month old son!”

In another world, where I’m comfortable allowing myself and my grief to take up some space, I told this man that my baby son died in April, and I’d really rather not look at photos of his son, aged only 2 weeks or so less than my own would have been.

In this world, I gave the briefest of glances at his phone, grimaced at him in an attempt to smile, and barely made it out of the shop before I couldn’t contain the tears anymore.

 

 

And still I left wondering how rude he thought I must have been for not gushing over his precious baby.

Talking About Owen, part 2

(Background: I started losing ridiculous amounts of hair unevenly around my head at the beginning of August. I wasn’t happy with the woman who cut my hair previously, so I tried someone new. Postpartum hair loss is a thing, I swear.)

 

Her: So…were you going for an asymmetrical look?

Me: Ah, no. It’s just, I had a baby, and now all my hair is falling out. But it isn’t falling out evenly, so the entire bottom layer on that side fell out, which means it’s like an inch shorter than the the other side. Also there’s a weird spot on the top. I know it looks ridiculous. I didn’t try to make it look that way, I really didn’t.

Her: No, no, it looks fine! I just wanted to know if that’s what you were going for so I’d know how to cut it.

**general hair chatter**

Her: So, how old is your baby?

Me: Um, actually, he passed away soon after he was born.

Her: *shoulder squeeze* I’m so sorry. What was his name?

Me: Owen. His name was Owen.

Baby Loss Before and After

I’m inspired by Meghan at Expecting the Unexpected today. Some of you may have seen the series of photos that seem to have gotten popular lately of women before and after having their babies. The first photo is usually a maternity photo with a big, pregnant belly, and the second photo is the same as the first, but re-staged with the baby where the belly was months prior. To most people, these pictures are adorable. Brutal honesty: I resent the hell out of these pictures. I don’t ever seek them out, but they pop up in my newsfeed on facebook or in random places around the internet from time to time. Sometimes I wonder if feeling bitter at these types of things is something I should work on, but that’s an issue for my therapist and future me to work on.

ANYWAY!

Meghan made her own set of before and after photos as a baby loss mama and issued a challenge of sorts for others to do the same. I had maternity photos taken while I was pregnant, but I was so darn excited about this that I used a cell phone picture Zach took during the Georgia snowpocalypse and recreated it when I got home from work last night, so forgive the cell phoney quality. I may recreate my maternity photos later on because I think it would be neat to have ones with Zach included, especially the ones where he’s holding Owen’s little dinosaur shoes on my belly.

29ish weeks pregnant

29ish weeks pregnant

Five months post Owen

Five months post Owen

Putting on my old maternity clothes was not as emotional as I thought it would be, but looking at that old picture was. During all of this snow, I remember talking to Owen about it–how fun snow in Georgia is, how it shuts the whole city down. I wrote his name in the snow and took a picture, thinking that if he lived I could show him he had gotten to enjoy the snow in-utero and if he died, well…I had proof that we had always included him, always loved him.

I loved recreating this picture. While I haven’t seen very many of the slide shows Meghan linked to on her blog yesterday, I had assumed that some of them included empty-armed mothers like us. Surely, there was some acknowledgement that there are women who carry their children but don’t bring them home. Apparently, there wasn’t, so here’s to us.

 

 

Finding Myself After Loss

Owen’s life brought me a lot a of joy. Carrying him and fretting over him was stressful and heartbreaking, but it also taught me a lot about mother/parenthood, and I know that I am a better person for having grown him, birthed him, and loved(ing) him.

However (and it’s a big however), being pregnant with a baby with multiple fetal anomalies (a phrase I hate but can’t escape from) is hands-down the most physically and emotionally taxing thing I’ve ever done in my life. I think the emotional heartache is obvious at this point, but the physical difficulty is something I wasn’t prepared for. I had polyhydramnios that gradually increased from my second trimester and reached it’s peak about 3 weeks before I delivered. My belly consistently measured about 3-5 weeks ahead of how far along I actually was throughout the second trimester. Then, at 30 weeks, I measured full term. I asked my midwives if we could just stop measuring at that point. I don’t know what I measured at 36 weeks, which was peak polyhdramnios time, and I don’t want to know. Extra fluid is consistent with an asphyxiating form of skeletal dysplasia (the chest is too small to allow the baby to process amniotic fluid), so every time I heard how far ahead I measured, all I could think about was Owen’s tiny chest and his inability to swallow fluid and how likely it was with each increasing centimeter that he was going to die.

Polyhydramnios can bring on a bunch of uncomfortable symptoms that make life in general pretty unpleasant. I was quite short of breath, which can happen in later pregnancy anyway but seemed compounded by my high fluid levels, and I often felt like I just couldn’t breathe very deeply or get enough air. I had AWFUL pain in my ribs. AWFUL. Sometimes Zach would find me on all fours on the floor because it was the only position that really brought any relief. My belly got all stretched out and shiny. Obviously, all pregnant bellies stretch, but my belly was pretty crazy at the end. At 30 weeks, I had no stretch marks, and then my belly had about 4 weeks worth of growth in 1 1/2. Bam. Stretch marks. My shiny, stretchy belly also got pretty itchy, and I didn’t find any relief from that until 2 weeks postpartum. The irony is that I was dreading stretch marks from the beginning of pregnancy, but when I got them I was relieved. Even though Owen died, my body will always carry the physical evidence of him.

All that is to say this: Owen’s pregnancy made my body and emotions a wreck. Beyond losing him, which is its own grief, and beyond pregnancy itself, which carries its own challenges in the best circumstances, pregnancy with Owen wreaked havoc on me. The constant physical discomfort unique to carrying a baby like him combined with the never-ending worry and life/death news laid waste to me. From 16 weeks on, my energy was directed toward my baby. Researching, talking to specialists, doing everything physically and emotionally in my power to support Owen consumed most of my time. This increased exponentially the further along I got, and at the end of pregnancy, I’m not sure I gave a single thought to my own needs. If you had asked how I felt, I doubt I would have acknowledged that the extra fluid was having any affect on me or that I was devastated with worry. That took energy too, putting up a front that this was okay, that I was ready, that I had everything under control. By the time Owen was born and died, I had lost myself.

In the weeks after losing Owen, we were in shock-panic-disaster mode. All at once, I had no energy because of my grief, but I also had all the energy I’d ever had, because my whole body said “something’s very wrong and you need to fix it!” People brought us food and visited us in shifts, and I really don’t have words for how overwhelmingly supported we were by literally everyone, from our friends and family (which, to be honest, I expected because we have awesome friends and family) to our medical providers (wonderful!) to complete strangers (a blessed surprise–we still don’t know who left a bunch of groceries and the kindest letter on our front porch, and people we had never even met participated in our meal train). I’ve written previously about how freely I moved in and out of my sadness during those first months without Owen. Similar to pregnancy, I devoted my time and energy to my grieving and making sure that Owen would always be remembered. I was reluctant to give it up. I was up one night with Zach, tearful and lost, and I told him that I wanted to move through this stage, but I was worried that if my days weren’t full of missing Owen that I would forget about him. I wasn’t ready to be anything but Owen’s mother. I wasn’t ready to go back to work or read a book or go for a massage or really anything that might make me feel like me.

I only wanted to be Owen’s mom, but I also deeply felt that I was losing the self I am outside of motherhood even more. I didn’t look like myself, with my hair unkempt and my body shaped differently than I was used to. I didn’t feel like myself either; I had no idea what was happening in the world or even with the people around me. I wanted to be (what I saw as) selfish and carve some space out in my life for myself, so I did. Vain as it may be, my lumpy body and extra 30+ pounds bothered me a lot*. I couldn’t fit into my clothes, and I felt awkward all the time. I had tried to get out of the house to make myself feel better, but my maternity clothes were too big, and my pre-baby clothes were too small. All I had were yoga pants and Zach’s t-shirts. I felt ungainly walking around Old Navy in a maternity dress, but the first time I put on jeans that really fit, I felt so good. I could go out to dinner! And the movies! And for walks! I had pants!

So that was the first step. Every day after that, I put on clothes that fit and straightened my hair. I put on mascara. I called my boss and told her I was coming back. I put some new books on my kindle. I didn’t forget Owen; I just started taking care of both of us. I went back to work, and it was a setback. Zach had started meditating to deal with his adjustment, so I gave it a shot, too. That was a little too much silent emotion for me, so I did yoga instead. I put my mat on our back patio and thanked the sun and the wind with my movements. It was fitting because I think about Owen when the wind blows gently and the sun shines down on me. I practiced self-compassion. I read books and ate more vegetables and listened to the news and tried to keep track of other peoples’ life events. It worked. I felt a little bit better week by week. I felt more like myself, which was odd because I had sort of forgotten what I was like. It was as if I was meeting an old friend after years of distance. I still remembered Owen as much as I had before. I still loved him. Taking care of myself didn’t negate his memory.

 

*This is specific to me. Some people are perfectly comfortable with their bodies a few weeks post-baby, and that is totally fine. But I wasn’t, I’m not, and I probably won’t be until I can fit back into my pre-pregnancy jeans. Maybe if I had my baby, I’d feel differently. I don’t have my baby, so I think I’m entitled to my jeans.

Universal Grief

I’m constantly surprised that the grief things I thought were unique to me are actually universal. That overwhelming feeling of guilt I had the first time I laughed after Owen died or let an entire afternoon pass without an intentional thought of him? Someone else has been there before. The uncomfortable dilemma of how to answer someone who, during the course of idle chit chat, asks if you have any children? Yep, that’s already happened to a bunch of other broken-hearted mamas.

I have a lot of guilt. I know that it’s irrational and (after some really intense conversations with our cardiologist and Dr. Krakow at the International Skeletal Dysplasia Registry) I know that we did absolutely, 100% the best possible thing we could for Owen in letting him go. He was always going to die. From the moment he was conceived to his first little kitten mewl to the time we withdrew interventions, his course had been decided. But I still have guilt, and I’m learning that that’s pretty universal too. I came across this essay at Still Standing a few weeks ago, and as soon as I read the title, I felt it. I am not alone. When I am torturing myself that I didn’t do more for my son, a great swell of other mothers rises beneath me and holds me up. They’ve all been there before.

A large number probably even know what it’s like to believe that you could have done the impossible. After Owen had died, when his body was still with us but he was gone, I had the strongest urge to breathe life into him–to just put my mouth to his and breathe. He had been so perfect and robust, aside from his tiny chest. I just knew it would save him. I knew the numbers of his illness: the sizes of the chambers of his heart, the gradient of his pulmonary pressure, the circumference of his chest. But, I couldn’t stop myself from thinking that I could give him life if I just wanted it enough, wished hard enough, loved him more, even though I wanted him intensely, wished for him with all of my being, and loved him ferociously.

There’re always the what-ifs in so many things in life, but they are especially present in baby loss. What if I hadn’t taken one dose of ibuprofen, with my provider’s approval, at 8 weeks pregnant? What if I had eaten more protein? What if I had laid on my left side more? I do know that ultimately no amount of left-side lying, protein eating, or medication avoiding could have saved Owen from faulty genetics, from a mutation laced in his cells. I know that I had a nearly perfect pregnancy, health-wise. Still, in the moments when missing him overwhelms every other thought, I wonder, why isn’t he here? There’s no science that answers this pain, and there’s no genetic test that soothes the loss of him, my perfect, beautiful baby son.