The year that I was pregnant with Lucia- my first pregnancy- two children I knew died in completely separate incidents. First, a friend and coworker’s only child, a ten year old girl who was charismatic, smart and super caring, died in a car accident. Then my best friend’s second child, a beautiful baby boy, died of SIDS. They were different kinds of deaths, but what they had in common most in my mind was the suddenness, and the total injustice. Their parents in both cases were doing everything right. Ruby, the little girl, was wearing her seatbelt, in a car with both her parents, in the back seat. Neither her father’s caution in driving nor her seatbelt saved her. Likewise, Charlie’s parents could practically be poster children for doing all the things we know reduce the risk of SIDS- putting your baby to sleep on their back and all those other tips that I don’t even remember, but that they always did. And it didn’t matter. He still died, suddenly and unexplainably. Unfairly.
I got pregnant for the second time over the summer, and a month or two later another baby I knew died. (Is me being pregnant causing children’s deaths? Jeez, there’s some negative thinking….) It was the son of a really nice lady who, with her three sons, was renting a room from my mother-in-law. The lady had become a good friend of Paulina’s, often sharing meals and conversation as well as space. We had gone to visit and gotten to know her and her kids as well, including Chuy, her adorable, totally easy-going baby. He was sick part of the time we were visiting, with some kind of cold-like illness. Then he was sick off and on for a while. His mother took him to various doctors, and they gave him various medicines, and he seemed to get better, and then suddenly he was really, super sick and in the hospital. And they couldn’t help him by then.
Part of me can’t help but wonder if his death could have been prevented with better medical care. Certainly, Chuy’s mother did everything she could and used every resource and suggestion she had available. I absolutely don’t think it was her fault in any way, shape, or form, and I hope she doesn’t think that either, even in her darkest moments. Babies die in the U.S., too, despite some of the best medical advances out there. But how can you not question yourself, question all the events and circumstances, dwell on the what ifs and whys and why nots when life takes away someone you love that much, someone who’s not “supposed to” die until after you? How can I not imagine myself in Chuy’s mom’s place, with the same lack of options that I feel confident about when it comes to my child’s (and soon to be my children’s) health? Even while I do not believe it was her fault, I wonder if me finding more and possibly better options here could potentially prevent my child’s death in the future.
Mostly, though, through all of these deaths, I cried and mourned for the child and their parents, and I stubbornly refused to consciously think about the implications and possibilities for loss in my life. “It’s not gonna happen to you,” my best friend tried to reassure me, even in the midst of all her grief and sorrow. But I think you can only fool yourself into believing that if you think that you are somehow fundamentally different from the person experiencing loss, or if you find a way to blame them and can therefore convince yourself that it can’t happen to you because you won’t do x, y, or z. But of course I knew that it wasn’t their fault, and that I was no different, and that it could happen to me. It can. SIDS or a car wreck or cancer or a million billion other things. So I promised myself, I decided resolutely, in the aftermath of those two great losses during my first pregnancy, while inhaling and exhaling grief for what seemed like weeks on end, that I wouldn’t- couldn’t- let fear run my life. That instead I had to try to just be grateful for my child’s existence the days that she exists in my life.
So Lucia’s entire first year of life, no matter how exhausted and sleep-deprived-delusion and burnt out I felt, I thanked the universe profusely every time she woke up, even as I gritted my teeth and wondered how much sleep deprivation might kill me. She is no longer at risk for SIDS, but it doesn’t mean a kajillion other things can’t happen to her. I think that I am prepared, I think that I can deal with (some) bad things that might happen to her, but thinking about her dying from one of them, thinking of her not existing in my life, is so tremendously painful that occasionally I start to panic.
My angst and anxiety mostly only flare up when she’s having a health problem that’s not a normal cold, which thankfully is not very often. When it does happen, though, I get alternately angry and scared. I get angry imagining that if I lived in Louisville still, I would have the answers. I already had our perfect pediatrician there. When I needed a gynecologist, I told my friends what kinds of attitude/practice I was looking for, and they recommended me someone fabulous. My life was full of information and options to make informed choices about the health of myself and my child (and to recommend about the health of my partner). Here it’s just not.
I feel like I’m not being a good enough mother, because after a year in Puerto we still don’t have a doctor here that we can trust, that we have any confidence in. Lots of people, ourselves included, for convenience and price, go to the “pharmacy doctor”- a doctor who works in a pharmacy and sees patients on an acute basis. But pharmacy doctors have prescribed me an antibiotic that is dangerous during pregnancy even though I told them that I’m pregnant. They’ve given Lucia medicine that I’ve read isn’t used anymore for that kind of infection. For these and other reasons, I don’t think they’re a good option. But I don’t know what the good option is.
Many of our friends with kids go to the public health clinic, either because they’re happy enough with it or because they don’t have any other options economically. I was not happy enough with it, but neither were we impressed the one time we shelled out half a day’s pay for a pediatrician. Charging a lot doesn’t always mean they have qualities that you’re looking for. I also haven’t even bothered to sign her up on my insurance, because it’s a toss-up on them being more or less useless than most of these pharmacy doctors.
Thus, I feel like all health problems are on our shoulders, as parents practically acting as her doctor. I feel this immense stress that we have to figure it all out and advocate and push and prod for what we hope is the right kind of treatment. It’s a lot of pressure, to say the least. Not knowing where to go for health problems makes me feel ignorant and helpless and full of indecision. I am terrified that I’m going to make the wrong (uninformed) decision and it could be life or death.
I don’t think I realized just how badly I was handling the situation, emotionally, until the other night when I put myself into a panic imagining that Lucia was having an allergic reaction to a medicine we were giving her for a urinary tract infection. Her breathing seemed too labored, and I just felt like something else was wrong. She was getting worse instead of better, despite a couple doses of antibiotic she’d already taken. Her fever wasn’t going away even with fever reducer and cool compresses, and I just had a feeling that she needed a better doctor than the stupid pharmacy doctor we’d taken her to. Although she was sleeping, I wanted to take her to this expensive private 24 hour clinic right then and there. Conan wanted to wait until morning. I insisted. Well, to put it outright, I said, “I’m taking her whether you want to or not because if anything happens to her I’m going to kill myself.”
Whoa. Where did that come from? I had most definitely not been sitting around contemplating suicide because of her health problems, but I sounded eerily decided and sure of myself when I said it. Perhaps I was just trying to shock Conan into action? (I’m gonna go with that explanation, thanks.) I even kind of freaked myself out at that point, but I was too focused on getting her to what I hoped would be a better doctor to worry about it.
The doctor there certainly seemed more competent. She prescribed her a different antibiotic. We talked about allergic reactions (Lucia was not having one). I calmed down. Lucia’s fever went down a little more in the night air on the way there (she still had one, though). We couldn’t actually acquire the antibiotic until the next day, though, so yes, it probably really could have waited till morning (although points for my team, we probably waited less time at the clinic because it was late at night, and the price was the same). Days later, lab results showed that her infection was indeed resistant to the antibiotic that the pharmacy doctor had prescribed her, so I was right that it wasn’t helping.
By far the best things, for me, that came out of our nighttime trip to the doctor / my little panic attack were 1) knowing there is someplace decent to take her for emergencies, 2) calming myself down enough to get through the night, and 3) convincing myself to keep trying other doctors and pediatricians. I decided that even if we spend a whole month’s salary trying out doctors, I have to find a doctor that I feel is knowledgable and a good fit for my child. Even if we have to go to other towns to find it. I can’t take the pressure I’m putting on myself for her health. I can read lots of books and internet articles, I can take care of my kid in general and be a great advocate, but I’m not and I can’t be her doctor. If we have to go into debt to have a good doctor for her, it’ll still be worth it, better than late night panic attacks and suicide threats.*
Meanwhile, I’m trying to wrap my heart around this lack of control, still. Intellectually I know that my kid can have the perfect doctor, that I can “do everything right” and there’s still zero guarantee of her safety. Intellectually, I know that bad things happen to “good” and “bad” people alike, and that life isn’t some cheesy movie where things turn out fairly.
I know all this, but internalizing it emotionally, especially in the context of your child, is a horse of a different color. I mean, starting in pregnancy there’s such a fine, weird line of being totally responsible for them and yet still not being in control of what happens to them. Like you can wash their hands after they use the restroom and before they eat, and breastfeed, and give them only healthy food (for a while, anyway), but it doesn’t mean they won’t get sick. When you’re pregnant you can give up coffee and medium-rare steak and follow all the other rules, but it doesn’t guarantee you won’t have a miscarriage or a stillbirth. And then there are all the women who don’t follow the rules, to whatever extent (like my mom who smoked cigarettes throughout her pregnancy- gasp!), and who still have perfectly healthy babies. So what’s the point? Why even bother to act like it matters what we do, if it doesn’t give us the desired outcome?
Intellectually, I know that it’s a good idea to do the best you can because at least you’re more likely to keep your kids safe and healthy. But where do you draw the line? Up to what point can we pat ourselves on the back for having healthy kids and/or blame ourselves when our kids are not healthy, or when something bad happens to them? I mean, who are we kidding? I don’t even have all that much control over my own life and what happens to me, so how could I possibly really control what happens to my kid?
I don’t have the answers. I doubt you have answers, either, dear reader, parent extraordinaire though you may be. I don’t think there are real, solid answers. So before this new baby arrives and I stay up half the night watching him or her breathe, I’m trying to re-learn how to breathe myself. I’m trying to get more comfortable acknowledging my life in this gray, indefinite, uncertain universe. I’m not trying to prepare myself for the worst. I don’t think “the worst” will ever be anything but unbelievably, excruciatingly painful, and I don’t think having imagined it or practicing for it would make it any easier. I suspect it just makes us have more fear.
Instead I want to embrace my joy. I want to be able to nod at my fear, and let it go. Inhale it, and exhale it back out. I want to appreciate this great privilege (and great trial!) that is being a parent. I want to be able to emotionally internalize this knowledge that I don’t “deserve” this- be it a positive this or a negative this- any more or less than anyone else, that I can’t control what happens in life, period. Of course I want to strive to do my best, to be my best, as a person, as a parent, just because I want to. But I want to live knowing that I get to mess up and not be perfect and not do everything perfectly, and that it doesn’t make me more or less responsible for what happens. And when in doubt, I’ll try to keep breathing. Inhaling and exhaling, hopefully more joy and pleasure than guilt and fear. Breathing. And hope that my kids will, too.
*I’m pleased to report that we’ve since been to a pediatrician that we all feel good about- even Lucia felt comfortable in the doctor’s office for the first time ever! The doctor charges quite a bit more than these cheap (and crappy) pharmacy doctors, but she’s trilingual, and experienced, and nice, and totally, totally worth it for our piece of mind. Thank you, universe!
This was a really powerful read. Amazing work, my friend. I am not a parent but so many of these issues of control and health hit home for me. Living in another country is often and regularly a realization of lack of control. Vietnam was completely crazy and unreliable, but there was nothing to do but keep living each day and cross your fingers that the medicine was real, the food wasn’t too contaminated or that you wouldn’t be in a traffic accident. When I moved back to Korea I was relieved because the care is so much more reliable. However I have been struggling for months to get a doctor to respond appropriately to a health issue that won’t go away. I feel really frustrated and faced with a mouthy questioning westerner, I’m sure they do too. After hours and hours on google, and a couple months of attempted self care, I’m headed back to try and demand a different tactic. And this is just for me! If it were my child it would be so much more intense. I am sending you love, strength, faith, and health.
Yes, totally agree. Dealing with health stuff for myself has also been frustrating and I usually feel like the doctors HATE me and all my questioning. And I don’t feel like I’m getting quality care in general. Plus stuff like you say- hoping the foods not too contaminated, hoping the medicine is labeled correctly, etc. Totally relate. Good luck, lady! Sending you back the same love, strength, faith and health! We need it! Take care!
I love your comment about not preparing yourself for the “worst” because imagining it won’t make it any easier. I need to take that thought to heart.
Easier said than done, right? But it’s a good check-in for myself, when I start to feel panicky. Remembering that by worrying about that I’m not fully enjoying these beautiful fleeting moments that I do have right now.
Thanks for reading!!!