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.

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.

 

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.

Babies

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

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.