What Happened to Owen?

We got the results of our genetic testing several weeks ago. I’m not sure how much I’ve alluded to it here, but we had a full skeletal dysplasia panel completed with Owen’s cord blood. It took a full 3 months to get his results, and there was a chance that we wouldn’t get a result at all. Not all causative genes for SRPS or Ellis van Creveld have been found, so we had about a 60% shot at getting a meaningful result.

Owen had a mutation in the EVC2 gene, which means that he officially had Ellis van Creveld syndrome. This is what I had suspected during pregnancy, but since Owen was so severely affected at birth, I had started to think I was wrong, that he actually had one of the definitively lethal short rib polydactyly syndromes.

So what did EVC look like for Owen? He fit all the typical signs pretty closely: extra pinky fingers on each hand, short ribs, congenital heart defect, and short arms and legs. Except for the heart defect, which occurs in only about 50-60% of babies with EVC, his clinical presentation was fairly standard for an EVC baby. I’m still left to wonder why he was so severely affected. This was the diagnosis we had hoped for throughout pregnancy, but it didn’t bring us any hope in the end. (I want to be clear, though. For most babies with EVC, respiratory support at birth and surgery to correct any heart defects can lead to a happy, relatively healthy child. This disease is not lethal for 70% of babies, which is pretty significant.)

Most papers about EVC cite the heart defect as the main indicator of whether or not the baby will thrive. We found out that Owen had a form of hypoplastic left heart syndrome at around 33 weeks, which is one of the most complex heart defects to repair. There is no cure for HLHS. Parents with HLHS babies are given the option for comfort care or a series of surgeries that are considered palliative–the baby’s heart is essentially rebuilt so it can function with one ventricle, but there may be the need for a heart transplant as the child grows. Owen’s case wasn’t severe and even may have allowed for a repair with two functioning ventricles, but it was bad enough that we could be almost certain he would need open heart surgery at birth. I think it was probably around this time that it hit home for Zach and me that we wouldn’t be bringing our baby home for a long time if we got to bring him home at all. Our pediatric cardiologist, Dr. Videlefsky, was wonderful to us and so compassionate about Owen’s needs. I called him the day I got induced to let him know Owen would be here soon, and he assured me he would come whenever he was needed to evaluate Owen, which is no small feat since Owen was born at 3:08 am and Dr. V lives in Atlanta (about 1.5-2 hours away from us, depending on traffic). Owen cried some when he was born but needed lots of respiratory support. He did better than the NICU staff thought he would, so he was taken to the NICU to wait for Dr. V. During this time, his respiratory status was declining, and we knew that if we did not intubate him, he would die. I really, really did not want him to go through intubation if he wasn’t going to live anyway, so we tried some stop-gap measures until we knew if he would be a candidate for heart surgery.

As it turns out, Owen wasn’t a good candidate for heart surgery. His short ribs didn’t support the development of adequate lungs, so he wasn’t able to breathe well at all. It’s ironic that Owen’s heart, while not formed properly and not well-functioning, is not what took his life. When Dr. V did Owen’s echo, his pulmonary hypertension was so severe that he most likely would not have survived the surgery required to treat his heart defect, much less the recovery afterwards. His heart wasn’t really great either, but Dr. V thought a two-ventricle repair would have been possible if Owen’s lungs weren’t so tiny. He shared that he did not think it would be in Owen’s best interest to pursue surgery. Perhaps the biggest blessing in that moment is that I have never doubted Dr. V. I didn’t feel comfortable fully trusting any other doctor that evaluated Owen, but I trusted Dr. V.

We made a decision that I never wanted to make even though I had been preparing myself for it since 33 weeks. We stopped all interventions. We made Owen comfortable and rested him on my chest. He didn’t seem to be in any pain, and I thought at least I can give him this. He knows me, knows my voice, knows my heartbeat. I can’t keep him alive, but I can keep him loved.

That’s the why, medically, of Owen’s death, and I know we won’t ever have an answer to the greater Why (nor do I think there is one). It helps me to at least understand what physically took him from us. It has been hard for me since getting Owen’s official diagnosis. I spend a lot of time running the numbers: if only 50-60% of EVC babies have a heart defect, and only 30% of EVC babies die, how did this happen to us? Why weren’t we lucky enough to only pass on a mild form of debilitating disease to our son?

Zach and I have since undergone our own round of testing to confirm that Owen’s condition came from us, and we have both been confirmed to be heterozygous for a mutation in the EVC2 gene. That confirms that we carry EVC and passed it on to Owen, as I’ve referenced before. There is no effect of carrying EVC; it is only expressed when a person inherits 2 bad EVC genes.

Occasionally when people hear Owen’s condition was genetic, they start to ask about our family histories. Surely there were signs, they think. I’m sure the impetus for this is the fear that people could unknowingly pass a lethal disorder onto their children, but that can indeed happen. It happened to us. As far as Zach and I have been able to track, we have no family history of EVC. It seems that it has never been expressed before, which just means that our relatives who carry EVC produced offspring with non-carriers or got lucky and produced healthy offspring with another carrier. It’s rare to carry EVC and even rarer to mate with another carrier. The chances that Zach and I would both be carriers is 0.000004%, but now our chances of having a sick baby are 25%. How’s that for odds? It would actually be kind of romantic if it didn’t end with neonatal death. Statistics can shove it now as far as I’m concerned.

 

 

 

PSA: There was also no test available that could have told us we were carriers before I got pregnant. EVC is too rare to be covered by most prenatal genetic screenings. However, there are some options for testing that screen for more common genetic diseases like cystic fibrosis, Tay Sachs, spinal muscular atrophy, and others. Zach and I completed a genetic screening through Counsyl to ensure (as much as possible) that EVC is the only disorder we are at risk of passing to our babies. I suppose some people may balk at the idea of this kind of testing, but I would have felt so lucky to find out I was a carrier of a genetic disease via a lab report rather than being told my baby was going to die.

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.

 

 

Talking About Owen

Someone asked me how my baby was doing last week. Naturally, it got awkward. I don’t remember meeting this person while pregnant, but apparently she had been training with a coworker of mine and had spent a day at my old office back in December. We spoke for a few minutes back then but I can recall literally none of this interaction. It’s not surprising. In December, I was going back and forth between various specialists trying to get answers about what was wrong with my baby and whether it was lethal, debilitating, or only slightly disabling. To put it mildly, my mind was elsewhere. When I met this woman again yesterday, she kept trying to jog my memory. “You were about to leave for an appointment. It was a really busy day. It was just a few days before Christmas. You were wearing a red shirt.” Nope, sorry, I replied. I usually have a very good memory for names and faces, but I couldn’t remember her. I apologized and just asked her to remind me of her name and position. She did, and I thought we would proceed with our business. But no. Of course.

“So how’s your baby doing?” Very upbeat. It would have been uncomfortable enough if it were just the two of us, but we were in a group of people who also didn’t know I recently lost a son. I hesitated, knowing I was about to drop a bomb and she had no idea. I spoke very quickly, “he died very soon after he was born.” She apologized appropriately. I thanked her. I could feel everyone looking in my direction. Pity, curiosity, confusion–all of it directed right at me. What I really wanted to say was that I had a son whose name was Owen, that he lived for a few glorious hours and then he died, that he was magnificent, but what I did was direct my attention back to work. No one acted inappropriately, but I know talking about Owen usually makes other people uncomfortable, so I moved on quickly with what we were originally doing.

To make it clear, I love talking about Owen to almost anyone. Love it, love it, love it. I can tell you about his feisty personality, his chubby little cheeks, his brown (!) eyes, his fluffy hair, his extra pinky fingers…anything, really. Ask me anything. I will talk about my baby like any other mother. I don’t even mind talking about his death, although that’s a much more intimate conversation. At the same time, not everyone is prepared to receive the news of a dead baby. I’ve had to tell unsuspecting people that my baby died before–medical providers, other coworkers, patients (not often)–but it is usually one on one, and I am usually prepared for it. I have typically readied myself to do the hand-holding required (it’s okay, we knew he was sick, yes I’m fine/it’s fine/we’re all fine, and so on).

I had no reason to suspect that the coworker I mentioned above had any idea that I had ever been pregnant or had a baby, so I was completely taken aback. She was very nice, and she didn’t do anything wrong. There are just some days I don’t feel like carrying the burden of comforting someone else while I’m having to tell them something that pains me, so I was probably a little cold or standoffish. I felt bad at first, and then I felt irrationally angry. This woman did nothing inappropriate and said all the right things (aside from being a little insistent that I remember her), but just…it is not my responsibility to help anyone else deal with this or figure out what to say! I was anticipating the need to comfort her the moment she asked about my baby, so I got my hackles up preemptively and reacted before she even had a chance to show me how she would have really responded beyond “I’m sorry.”

That’s when I realized my anger is my fault. I have always assumed I bear the responsibility for comforting the other person in these conversations, and I resent it almost every time. I hate hearing myself say “It’s okay, we knew he was sick” because it is not okay at all ever. Sometimes I don’t talk about Owen when I want to because I’m worried it will make other people ill at ease, which truly sucks…but no one has ever asked me not to. I pretty much stopped referencing Owen on social media after he died because I didn’t want to be attention-grabby, which actually sounds kind of absurd now that I’ve typed it. So after today, no more. My baby died. And since I have to live that reality every day, I think I should get to live it as I want to, not in reaction to how (I think) other people perceive it.

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.

Let Me Introduce You To My Son

I’ve been writing Owen’s story. It has been slow-going because there’s grief to process with each paragraph. Some day I will post the whole thing, but until then, I’d like to share my beautiful boy with the world. Our pictures of Owen outnumber the minutes of his life, so there’s plenty to share.

My sweet, handsome, amazing son

DSC_3897

He was never alone, even in the anxiety-filled moments right after his birth.

Owen and Zach holding hands

Owen eyes

All of us

DSC_3925

Dr. Khurana, Owen’s neonatologist, was emphatic that Owen breathed easier when Zach was with him right after delivery. When Zach held his hand, Owen’s oxygen saturation went up, and he responded better to interventions. The first time I said Owen’s name, he opened his eyes and looked straight at me. He had the most beautiful brown eyes. For months before Owen was born, I slept with a small blanket. My intention was that if Owen had to leave me, he would have the blanket with my smell for comfort. Zach put it right next to his head when they went to the NICU. When I first arrived in the NICU, I called out to Owen. He let out a little cry and snuggled his little face into his mama blanket. When Zach and I talked to him, he was so much more restful and content. He knew us. It was wonderful.

When we knew that Owen would soon be leaving us, we dressed him in his train jammies and settled him onto my chest. We read a bedtime book, sang Happy Birthday, and thanked him so much for being with us. We told him how proud we were of him for fighting so hard and how glad we were to be his mama and daddy.

We loved him, loved him, loved him.

We love him.

Book time

Cuddling

family cuddles

That was Owen’s life: beautiful and love-filled, however short.

He was a tenacious little baby. He put the whole force of his body behind his cries. He joined our family with a wail and cuddled fiercly. Then, when he was ready to go, he left us with so much peace. I hope, one day far in the future, to meet death with the same grace my son did. I hope my life will be as full of love as his was.

family picture

Our beautiful Owen Jude.

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.

End of the Fourth Trimester

Owen would be three months old today. I thought about that this morning as I wrote 07/01/14 on a form for a patient. It wasn’t my first thought when I woke up this morning like it has been for his one and two month birthdays. I felt guilty when I realized that I hadn’t acknowledged his day upon awakening. (For clarification, he would also be 13 weeks old.)

Today was also my first day in a new position at work. I got a promotion, and I’m now working exclusively with teens and also supervising some other allied health professionals. It hasn’t escaped my notice that, on my dead baby’s 3 month birthday, I am doing something that I absolutely never would have had he lived. I’m happy about the new job. I love the work, and it’s closer to home. But I wanted to be getting back from maternity leave today, not advancing in my career. Hell, I would’ve been happy to be sitting in a hospital teaching Owen how to eat without a feeding tube today. I’m happy, I am, but what I wouldn’t give to be happy for so many other reasons.

I met Zach for lunch (another perk of my new job), and on the way back to my office I started bobbing my head to that happy Pharrell song. If you sat next to me at a red light, I wouldn’t look like a grieving mother.

I don’t know what to make of myself in this new (old) life. Sometimes I almost forget. Is that okay to say? Am I really allowed to put it on paper that sometimes I almost forget I had a baby and he died? I will absolutely never, ever forget Owen. But sometimes I forget how sad I am. Sometimes the grief sits so far beneath the surface that I can bob my head like a fool while I’m driving around town.

The Best Dad I Know

Owen and Zach

 

I am immensely lucky to be married to a man who held our family together with grace and courage at the same time it felt like we were losing everything. We only got to be parents in our physical universe for a mere 4.5 hours, but oh how privileged I am to have witnessed my husband become a father.  Zach is surely the best dad Owen could have ever wished for, and I couldn’t ask for a better partner to hold tight to, full of love and strength.

Happy (belated) Father’s Day to my most wonderful love.

 

9 weeks gone

Grief is uncomfortable.

For the first weeks without Owen, I was full of sadness. I both went to sleep crying and woke up crying, which I previously would not have thought possible. Zach had taken off work, and we spent a lot of time just talking about Owen and missing him. I freely gave myself to grief and just wept. It felt right to grieve that way. Owen deserved to be mourned. Toward the end of that time, we started venturing back into the world. It felt good to get out of the house and do things that used to make us happy, even if we weren’t able to fully enjoy anything yet. Relatively often, one of us would experience what we started calling “sad attacks” when we would be in the midst of a completely innocuous activity and suddenly become overwhelmed with grief. That I’d end up sobbing about 5 minutes into my daily shower was kind of a given for almost a month. I imagine it was a pretty typical experience. Meditating on Owen’s life and how special he was to us felt completely natural, but that understandably brought grief along with it.

Nothing felt wrong about being so sad for so long, but the overwhelming sadness started to wane eventually and gave way to a general melancholy that accompanied everything I did. Zach returned to work, and I was at home alone. In the past it would have been a chance to watch all the terrible reality TV and crimes dramas that I wanted, but I didn’t really know what to do with myself anymore. I wasn’t really keen on seeing anyone. I definitely didn’t feel comfortable being out of the house for very long, lest I lose my composure entirely in a public space. I slept a lot, read a bunch of books I’d been storing on my kindle, and started to think about what I was going to do for the foreseeable future since my plans for the next eighteen years were now a bust. It wasn’t actually as depressing as I’m sure it sounds. I’d been a little anxiety ball for the past 8 months so sleeping until noon felt pretty alright. And I did watch a lot of bad television.

Sometime around five weeks, anger started weaseling its way in. I hated feeling angry. It felt so wrong and disrespectful of Owen somehow to feel angry. The kicker was that I didn’t even have anyone or anything to be angry with. Who was I supposed to rage against? What happened to Owen felt like a kick in the teeth from the universe or a big cosmic joke, but what happened to us wasn’t some supernatural punishment for past sins, it was genetics, an autosomal recessive disorder. As much as Zach and I love each other, 25% of the time, our genes won’t work together. The statistics for Owen’s condition are astounding, something like 1/250,000 for the general population. But us? 1/4. Gah! I was so angry at our broken, mutated genes and the unfairness of it all. And so, so, so very sad that the genes we gave Owen took him from us. I didn’t know what to do with my anger, and I still don’t. I’ve gotten much more accommodating…I don’t fight it anymore, but I don’t feed it either. It’s supposed to be normal to be angry, so I just let it flow.

When I started back to work, I felt like I was having a new, ghost-like grief. During times that my mind was occupied with mundane, daily tasks (putting on scrubs for work, for instance), my breath would catch and my heart would break, and I just felt consumed with devastation that Owen wasn’t here. I would go stiff at the suddenness of it. But then as quickly as it came, it would pass without any residual effects.

I am content more often than anything else now, pleased to just be in whatever experience I am having. Oftentimes, I do still feel sad. The weird thing is, I’m also happy when I’m sad, and I’m starting to realize that’s the new normal. I’m not some kind of bereaved parent savant who just knows that this is the right way to move forward, but I feel like this is simply what happens when you lose a child. Everything in the world is tempered by the knowledge that someone who should be here, isn’t. That can only ever be sad, and so I’m both at the same time, all the time.

Owen would be 9 weeks old today.

I miss you and love you so much, my sweet, wonderful, beautiful baby boy.