It Could Have Been Worse

Sometimes I  do this thought exercise where I imagine how much worse things could have gone for Owen and us. It’s like a really messed up Dayenu, except instead of “it would have been enough,” it would read “it would have been worse.” If Owen had surgery but died by himself on the operating table, it would have been worse. If Owen had not breathed at all or never opened his eyes, it would have been worse. If Owen’s birth had been filled with chaos, it would have been worse. If I hadn’t gotten out of my bed in time to see Owen pink and full of life, it would have been worse. If I only ever saw my Owen knowing that he was definitely going to die, it would have been worse.

Zach’s always telling me not to quantify our suffering as if there are easier or harder ways to lose your child, but it helps in a way. It reminds me that I do have things to be thankful for. I know other mothers whose babies died, and I know that I am lucky to have seen Owen’s big brown eyes. I know so many things that could have happened and didn’t, that I know to be grateful for what good fortune we did have. The math doesn’t always work out though. Sometimes I think: What if Owen had lived for a few years and then died? What if he reached an age where he understood what was happening to him, but we couldn’t save him anymore? What if we had had to tell him he was going to die? I don’t really know how to feel about that. I obviously wanted to know my son, but I am very glad that I did not have to explain concepts like death to him…especially since it’s too overwhelming for me to fully grasp. I know of parents who have had to do this. Perhaps they think if their child had died at birth, it would have been worse. Then again, maybe we, all of us bereaved empty-armed parents, are just lucky in our own ways. There’s probably always a trade-off.

I would rather have Owen here than not, but still, I am so, so glad that I’m not sitting by a CICU bed right now. Often when I was pregnant, I felt that if we could just help Owen through the first weeks to months, then it would all be okay. I’m starting to realize that that is not the case. I know we would have spent the rest of his childhood wondering if he could defy the odds anymore. Every cough would have been a crisis. We would have been completely broke all the time, and I would have not returned to work for many years. I would have given it all–money, my career, the sureness of knowing what was going to happen to my son–to love and care for Owen, but I am still happy for what I’ve got. I’m not really sure what to make of that. If the impossible happened, and I was in the hospital with my baby right now, I’m sure I would choose it. But I’m so relieved I didn’t have to.

I do agree with Zach that there’s no point in putting a measure on this kind of pain. The only outcome is a scale that reminds me that, while we’ve been woefully unfortunate in this area of life, there are so many other ways in which our life could be tragic. When I remember that, I’m both grateful for how very good most of our life is and also terrified of what else I can lose. I never would have considered life to be so fragile before, but now that I know differently, I’m trying to learn to live as infinitely as I can in each passing moment.

It Happened

I’ve been dreading patients’ questions about my baby the whole time I’ve been back at work. It’s pretty common that patients ask me about my personal life, which I can understand because I am aware of the most intimate details of their lives. I figured it would happen with one of the teen patients I see. Because they have regular, frequent appointments and I am the only nurse many of them have seen, they tend to feel comfortable asking me very personal questions (again, also probably because we talk very openly about things that are very personal for them). I was surprised today when it happened with a regular, adult reproductive health patient. I had seen her last year for her annual exam, but I wasn’t pregnant at the time. She had asked then if I had any children, to which I jokingly responded that my animals were the closest thing I had to kids. At this year’s annual, I was talking to her about preconception health and her plan for kids when she said “You don’t have any kids if I remember correctly, right?” Gah. I froze. It would have been really easy to say no. I don’t have kids. But I did have a baby, and I didn’t want him to go unrecognized. I knew telling the truth would risk making her ill at ease for a visit that is already uncomfortable for most women, but there was no way I was going to be able to pretend that I hadn’t experienced the greatest joy and greatest tragedy of my life. I told her I had a son who died as an infant, but no, I didn’t have any other children. It actually wasn’t all that awkward! She was slightly taken aback but simply told me she was sorry. I thanked her, and we got back to her visit.

I’m glad that milestone of bereaved parenthood is over. It wasn’t exactly the situation I was dreading-someone asking about my baby or talking to me about new motherhood, but it’s good preparation. I’m sure it will happen again, and I hope that it will go as well. I’m happy that the first time happened with someone who knew the right things to say and reacted remarkably well.

Forward steps, everyday.

Work

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.

Inaugural Blog Post

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.