Babies

Posted in babies, babyloss by

There are a lot of babies in my life: people having babies, people trying to have babies, people losing babies. I’m 27, so it’s pretty much par for the course. When we lost Owen, I really thought I’d be just devastated to see other babies around his age, and while it has been hard, it hasn’t been awful*. I’m not sure why it doesn’t bother me very much, except that I don’t really see those babies as Owen. I feel very zen about the whole thing. Owen was born, he died, and there will never be another baby like him, so why get all up in arms about babies that are not Owen and whom I therefore do not want (For myself. I’m sure they’re completely pleasant babies, and I’m glad their mothers want them).

The exception to this is any baby I hear about who shares Owen’s birthday. I just want to tell them that that is my son’s birthday, and their offspring needs to get back in and re-emerge on another day. The fact that other babies were born and lived on Owen’s day is just not fair. Fortunately, it’s only happened once. Unfortunately, the mom was my patient and I had to talk to her pleasantly for the next hour, AND she had her baby with her.  Cue jealousy, anger, and resentment.

You know what does really bother me though? Pregnant ladies. OMG. I cannot handle a (visibly) pregnant lady at all. It really just sends me into a tailspin. My happiest times with Owen were while I was pregnant. All my memories of him and hope for him ended when he was out of my belly, so when I see another pregnant belly I’m just reminded of how much I lost. Ugh. When/if I am ever pregnant again, I’m not sure how I’ll feel about it. I mean, I know I’ll be paralyzed with fear for the first 15-20 weeks until we can be guaranteed that the baby doesn’t have SRPS, but after that I doubt I’ll relax. Right now it feels like I’ll just relive Owen’s pregnancy over again with each new milestone, so I’ll be celebrating and grieving all at the same time. But hey, I used to think seeing babies would give me a really hard time, and that hasn’t been so bad.

 

 

*It’s an unfortunate fact of grief that a lot of times good=not awful.

 

9 weeks gone

Posted in babyloss, genetics by

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.

Work

Posted in recovery, work by

I went back to work last week. I truly thought it would be an easy transition. I’d been on leave for 7 weeks, and I was getting kind of bored. People kept asking me how I felt about going back, and while I definitely wouldn’t have been okay 4 weeks after our loss, I thought 7 weeks was good. It certainly seemed like I should be fine enough to get through a work day by then.

My first day back was fine. My coworkers were all very welcoming and happy to see me, which was nice. It was good to know that I can’t just drop out of life without affecting other people. The week went really well, and it seemed like things were going to be  okay. I had worried that it would be hard to make it through a day living my life as normal without Owen, but it seemed to be working out. I left work on Friday feeling pretty optimistic…and then Saturday hit. I don’t know what happened, but I was irritable or sleeping all day. I fought with Zach about stupid things, and five minutes after getting annoyed about something, I couldn’t even remember what was bothering me. I was just mad without reason a lot of the day. Zach asked if I thought work had been harder than I thought it would be. I said no, but then I just started crying and didn’t stop for an hour. Clearly, the transition had not been as smooth as I thought.

When Zach went back to work, he told me in the first few weeks that it was hard to grieve and work at the same time. Pretty much, either one of those things takes up the majority of your emotional energy, so he could only do one. I thought I would be able to handle both because I had spent more time out of work, but I was quite wrong. Zach’s experience was true for me as well. Without any emotional energy to invest in remembering and loving Owen, I just bottled it all up and then exploded on the first day I didn’t have to devote to work. I was a wreck for the most of Saturday and the majority of Sunday morning. I was able to get myself together for socializing on Sunday and Monday (I was off for Memorial day), but it was hard because this new grief experience was so fresh. I’m back at work again this week, and I’m much more aware of how difficult it is. I spend my drive in the morning remembering Owen and storing up as much love as I can for the day, and then I spend my drive home grieving. It sounds awful, I’m sure, but it’s really not all that bad. It’s natural and right to miss Owen so much. I think a lot of my outburst on the weekend was related to not feeling any of those things, so I’m trying to find small moments in my work day where I can devote my energy to my son and my sadness.

One of my biggest concerns was seeing patients again. To give some ambiguous background (since this is the internet, and I’d like to keep my job), I do a lot of work with teenagers now, and I see the same kids on a fairly regular basis. A bunch of my patients had seen me when I was pregnant, and of course I didn’t tell them what was going on, so if we discussed my pregnancy at all, it was limited to questions about when I was due, what I was having, and if I was coming back after the baby was born. So, I was worried what I would say when I saw some of my more regular patients who had shown an interest in my pregnancy. I’ve been back a week, and I still haven’t seen anyone who remembers that I was pregnant. I imagine that as the summer progresses, I’m bound to see more kids who do remember and will be curious. When they ask about Owen, I still don’t know what I’ll say. Fortunately, they’re teenagers, and by nature they don’t really attend to the needs of anyone else. I imagine that if I do tell them that I had my baby and he died, they’ll feel bad for me for a moment and then we’ll move on. I don’t really know if I want to be that vulnerable with my patients, but I don’t know what else to say. I don’t want to lie about Owen. I’ll have to think about this, and maybe I’ll come up with something or maybe I’ll just say whatever feels right in the moment.

i carry your heart with me

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I couldn’t eulogize my son. I tried, I really did, but just the thought made me ugly-cry. Instead, I chose to read “i carry your heart with me” (which I also didn’t manage to read without ugly-crying). I don’t feel bad about not being able to pull myself together in time for the service, but I did have thoughts to share about Owen. This is what I would have said:

I never really thought I’d want a boy. Before I got pregnant, I wanted a girl. I knew I could just as easily have a boy, but I couldn’t imagine how I’d raise one*. In my first trimester, I worried that if we found out we were having a boy I’d be disappointed. I thought I’d spend the whole pregnancy coming to terms with not having a girl (ha! not even). At 13 weeks, Owen was very much not a girl, and I didn’t even care! Almost as soon as our sonographer told us we were having a boy, I was elated! I was also relieved. The worry that I’d be disappointed in my baby’s test results before he was even born were put to rest. I set about preparing for our baby boy with complete contentment. I truly never imagined there would be anything else to worry about–I was very healthy, my husband was very healthy, so surely our baby was going to be healthy.

When Owen’s arms and legs lagged behind the rest of him at 15 weeks, they told us he might have a form of dwarfism. Alright, that’s different, I thought. But I didn’t really care all that much. I just figured we’d adapt some things in our lives to fit a little person. I showed articles to Zach about little people doing everything average height people can do so he wouldn’t be worry. It never occurred to me skeletal dysplasia could be lethal. By the time we went into the ultrasound with our perinatologist, I was genuinely excited at the possibility that we might have a very unique little being on our hands. And…we did, but not in any way either of us ever imagined. For the first time in my pregnancy, I was disappointed that things were definitely not going as I had planned. We were scared, so we set about preparing as best we could for a potentially very sick baby who would perhaps die. All along the way though, we were looking forward to our son. Owen was maybe going to die, but first he was going to be born! We embraced him always.

That’s what I really want people to know about Owen. He was cherished and wanted. Even with all his uncertainties, we were never disappointed in him. His problems weren’t a surprise. We didn’t begrudgingly accept him. We knew he was different, and we wanted him just the same. We were excited to be his parents! We welcomed him into our family and into our hearts, and we are still so glad that he was here even though he had to leave too early.

 

 

*I’ve since done a total flip on this. Bring on the baby boys!

Everything Out of Love

Posted in babyloss, hard decisions by

From a very early time in Owen’s life, Zach and I made seemingly impossible decisions for him: Do we carry Owen to term? How far do we go with testing in utero? How far do we go with interventions at birth?

When do we stop trying to make Owen survive and instead let him die gently and in peace?

I found every. single. one. of these decisions agonizing, especially the last one. I would examine all of our options endlessly, even after we had already made a decision. I could not reconcile the idea that we were even having to make these choices. After what was probably the tenth time that I questioned Zach about the adequacy of our birth plan and preparation for Owen’s life (or death), he finally laid bare how he felt about it.  He explained “The way I see it, we just make every decision we can out of love for Owen, and that makes it the right decision.” From that point on, that’s how we made decisions. We asked ourselves what the most loving decision was, rather than the right one.

Looking back, this was perfect.  In situations like ours, there are many options. Very few of them are right or wrong. When Owen was born and the neonatologist asked if we wanted to put Owen on the ventilator, it was hard to say no.  Opting out of the ventilator was a movement towards a gentle death, and how could we make a decision that would cause Owen to die? But when we looked at the options, we didn’t feel that intubating Owen was the most loving decision since it wasn’t going to increase the quality of his life in the brief time we had with him.  Therefore, it wasn’t the best decision for him.

I struggle sometimes with guilt that we didn’t tell the doctors to do every medical intervention possible to try to keep Owen breathing, to keep him alive as long as possible no matter the cost. What if Owen had been born to another mother, one who would have insisted on intubating him, operating on his various heart defects? Would she have had an extra day with him? Maybe an extra week? But then, I remember: I am Owen’s mother. I would have done anything to save him. I would have given him my own lungs if I could, my own heart. There weren’t any medical interventions that would have given Owen a chance. What he truly needed was for us to love him enough to let him die in our arms, rather than in transport to another hospital or on the operating table.  That was the most loving thing for Owen. He went to sleep for the final time on my chest, hearing the same heartbeat that had given him life for so many months, listening to his father tell him how much we loved him.

Inaugural Blog Post

Posted in babyloss, recovery, short rib polydactyly syndrome by

So I decided to start blogging.

It’s sort of bittersweet, because I intended to blog if Owen lived. I thought it would be a nice way to share Owen’s story and allow family to keep up with what we going through, medically and otherwise. I thought I’d be posting pictures of Owen in the hospital, getting his first real bottle, recovering  from surgery, celebrating going home with all of his nurses who would obviously love him so much. I wanted to take him home, and I wanted to put it on the internet  so people could revel in our miracle baby.

Owen turned out to be a different kind of miracle. Aside from his tiny lungs and heart problems, he was completely perfect in every way. Even his extra little fingers were perfectly formed. He was beautiful, and he taught me how to love in a whole new way that makes my life richer and deeper. He made me a mother, he made me selfless, and he made me strong.

So anyway, I still decided to start blogging about Owen and our life after him. It’s just taken on a new tone entirely.

I wish our story was different, but I hope that sharing it can help families like ours. More details of Owen’s story and ours are available here and here.