Hello, Dear Readers,
It’s end-of-project eve. Four years ago, Herr Husband and I took Das Big Boy into the Launch Pad, a non-medical room in the NICU–basically like a hotel room–into which parents can take their babies to practice having them at home. The medical staff are there if you summon them, but leave you alone otherwise. Now keep in mind, Das Big Boy was on oxygen when we took him home (and would be for another eight months during the day and almost a year at night), and had a naso-gastric feeding tube (a tube that ran from his nose to his stomach into which we put breast milk) that Herr Husband and I learned to insert OURSELVES (for weekly changes). Everyone, and I mean everyone, we speak to thinks this last part is insane: friends who are nurses, friends who are lay people, Das Big Boy’s doctors, everyone.
That night, I barely slept. Das Big Boy (all 8 lbs 2 oz of him) didn’t sleep great either. The first thing we did was put him down on the bed, lie down with him, and marvel. Keep in mind he had never been on a bed before. He had never left his pod in the NICU, except for a horrifying (and unnecessary) VCUG, where they shot dye into his urethra to check for kidney reflux that he didn’t have. We had held him in rocking chairs next to his crib, and he’d been in a swing or a bouncer near his crib (we brought in a huge selection of stuff to keep him entertained once he aged into real time (past his due date)). But he’d never been anywhere else. Laying him on that fake hotel room bed and lying down with him felt like a revelation: he was ours.
It was like Christmas eve, and the night before the first day of college, and the night before my wedding all in one. I had that bubble-blooded feeling of gleeful, terrifying anticipation. We were still trying to figure out if we could make nursing work at all (ultimately, I felt so pressured to get calories into him that I gave up. I sort of blame medical pressure to fatten him, but also my own anxiety. Don’t worry. I pumped for 19 months.) So we tried some of that. We fed him some bottles and gavaged him some tube feedings. We held him and sang to him and walked around with him (something else we’d never done before, and something I wouldn’t do with an untethered infant until Little Liebchen. I used to startle at other people’s range with their unplugged babies). At around five am, I gave him a bath while Herr Husband slept, to be sure I could handle it. We managed. We began to feel natural. A bit more like a family. He was ours.
One of my readers, Andrea at An Early Start, a micropreemie mama and awesome storyteller, asked me what my biggest surprise since leaving the NICU has been. Like so many of the monumental things in our lives, there’s a dichotomous collapse that happens with me and DBB’s preemiehood. It’s everything and it’s nothing. I can forget it entirely and be defined by it. I can be enveloped by its lessons to appreciate the fuck out of my kid, or I can barely stop myself from using the word fuck when yelling at my kid. It telescopes into being incredibly far away and short, or maybe it’s incredibly far away and long, and yet sometimes it was so recently and interminable, or just yesterday and the blink of an eye. Sometimes it was traumatizing and sometimes it just was what it was. Sometimes it changed me profoundly into a stronger, better human, and sometimes I’m still the same flawed person I’ve always been, toiling on.
On the issue of strength, I do have something to say. I always thought of myself as a wimp. Some of my closest friends voted me (out of six of us): least likely to survive a zombie apocalypse, fourth smartest, and fourth nicest (but also best looking!). I always thought I was a wimp, too. In the event of a zombie apocalypse, I figured I would either lay down and die or become the prostitute hanger-on for a group of stronger people. As it turns out, neither of those is an option for a NICU mom. So I did what you do. Which is just doing. (Not in the prostitute way). So much of strength is circumstance. Now I’m still not going to go do Frigid Infliction, like some of my crazy friends, but I know I can keep going. Not because I learned that I’m some special paragon of strength, or because this experience made me stronger, but because I’m a person, and that’s what people do.
If the NICU didn’t give me the gift of strength, it did give me the gift of perspective. The problem with the gift of perspective is you have to cultivate it, keep finding it every day, every moment. I have some tricks for that:
1) Surround yourself with friends who have perspective. The mamas I’ve brought into the inner circle (and the original inner circle members) help me with this. NOT by reminding me to have perspective, which is a colossally annoying thing to do to someone, but by talking stuff though and being good role models. And by making me laugh. And by not complaining a ton about small shit. Or, if they’re complaining about small shit, by being funny about it.
2) Take a break. I suck at this. Like, really. Das Big Boy and I both have to have the last word in an argument (remember how he’s four? I suck.) so in the moment it’s hard for me to take the space to clear my head. But it does work.
3) Think love. It was SO hard for me to imagine ever feeling mad at Das Big Boy when he was a NICU baby and when he first came home. Herr Husband and I actually used to fight over changing his diapers because there were days that was the only way we could have physical contact with him. It’s hard to imagine a person whose shit for which you used to clamor doing anything that doesn’t seem miraculous. As it turns out, he does. But going back to the deep love that I’ve always had for him can help me keep perspective on what matters (my children growing up feeling loved and safe and happy in their family and continuing to grow as humans), and what doesn’t (ice dams, or whether we worked on crayons and coloring enough today, or how many fruits and vegetables were consumed (in a smoothie, of course)).
4) Have fun. Fun is good for perspective. Jump on the bed. Drink wine with your girls (meaning your friends, not your children. With them, I just recommend drinking wine in their vicinity). Go on an adventure. Eat donuts.
So that’s my surprise. How everything has changed, and how nothing has. How I can both love being a mom, and find it so important and rewarding, but also so tiring and annoying. So I guess in a way, it’s a surprise, but it’s also stuff I could have figured all along. Hope that answers your question, Andrea. Perhaps a bit too philosophical and a bit short on actual surprises. You never know what you’re going to get here with the ‘Frau.
Ooh! Wait! One actual surprise is that I wish I could have been a doctor. I love this medicine stuff, you guys. Still. Like so much. But I’m too old and want to spend too much time with my kids to go to med school or nursing school or PA school. Also, I think I’m banned from more grad school (by Herr Husband. Not by schools. Schools generally like me). Oh well. Live and learn. A cliché and good advice for what to keep doing. Go forth, dear readers. Live. Learn. And love, too. That’s the best one.
Today is Das Big Boy’s due date, a fact that is remarkable only because it feels like forever ago that I started blogging every day, but it was on his birthday, which means the distance between his birthday and his due date was–a world of duh–rather long. Twelve weeks and two days, to be exact.
Due dates emit a forcefield in preemie land. To mix metaphors, they’re when the gun goes off (ok, young man, now you’re REALLY one, so start acting like it), so to speak. They’re also the date by which you feel you’re supposed to be able to bring your babe home. And in many, many cases, they are. I can remember a nurse saying in late November that she was sure we’d have our guy home by New Years. But New Years, my father-in-law’s birthday, MLK, and my birthday came and went without a take-home baby. I remember sobbing that if he wasn’t home by
Valentine’s Day, I didn’t know what I would do. Thankfully, he made it. But it was hard. The pre-due date time was bonus time with our guy. Sure, it was scary and depressing bonus time, but it was still time during which we got to know him, love him, hold him, bathe him, sing to him, and read to him. But the post-due date time was time he should have been with us, living his real baby life at home. Of course, plenty of preemie families don’t get to bring their babies home at all. So we were lucky. But also sad. But also lucky. And so on.
Once again, I told Das Big Boy about his due date this year. He wasn’t that impressed. I think unless I start offering a birthday gift, it’s just not going to be that interesting. He still conflates his NICU time with the time he and Little Liebchen were hospitalized with RSV. (“That’s when I watched Grover and Piño“).
And, to really remind you of the magic in the universe, this. Because four years ago, who would have thought we’d be celebrating something at once so simple and momentous today?
We had a wonderful Christmas as a family. Relaxing, bountiful, and fun. Santa, presents, and breakfast; frolicking outside, Gigi, Papa, Mimi and lunch; a family walk; dinner; Christmas movies, stories, and bed. Now boardgames and wine for the grown-ups.
Our five family Christmases in review:
Merry Christmas to all, and to all a good night.
Sweet dreams, sweet ballerinas.
I hate that my Ferguson post has to be short. You may hate that I’m writing one at all. So we’ll call it even.
A lot of things break my heart about the fact that an eighteen-year-old young man was killed by a police officer, and that said officer doesn’t even have to stand trial for his death.
But this is, for better for worse, mostly a mom blog. So I’m going to look at this as a mom. A mom whose heart broke for Trayvon Martin, for Eric Garner, for Tamir Rice, and of course for Michael Brown. And for so many more. And for their mothers.
Because here’s the thing. We all worry about our children. A lot. I may even worry about my son more than most (and it’s not a contest, but I can tell you that I worry more about him than I do about my full-term daughter. His start was scary, and I may never get over it.).
Of the five women with whom I became close while Das Big Boy was in the NICU, four were women of color. Two of those women have sons. I know they poured every ounce of worry and love into their sons just as I did into mine. I know they worry to this day. But they have a worry I don’t. Because their sons are black. And that’s an injustice that really, really pains me. They have to worry that some people may respond to their sons with fear or aggression just because they are black. And that sucks, because we moms, especially we preemie moms, have enough to worry about.
I’ve broken some laws in my day. I needn’t detail them here. But if you went to college with me, you know what I mean. And my sole brush with law enforcement illustrates perfectly the concept of white privilege, that unearned privilege that my children will inherit from me unless our world changes.
I was twenty-two, recently graduated from college. A friend from high school and another friend’s ex-boyfriend and I took a cab home from a Boston bar to a Wellesley street in an effort to find the first friend’s ex-boyfriend. My friend may have vomited in the cab. I may have offered, in the ultimate act of lady chivalry, to wear her pukey shirt so we could spread out the stink. We may have changed clothes in the street. Someone (wisely) called the police. Surprise! The police did not even chide us. They drove us home to our parents’ respective mansions with friendly banter the whole way. Not a word about keeping it down at 2 am, nary a suggestion to lay off the booze, not even an allusion to any puke stink. How do you think that would have gone down if we’d been three black young adults in Wellesley, (a town where for every 1000 residents, 110.3 black people are arrested while only 9.4 white people are arrested)? And that, people, is white privilege. It doesn’t mean that all white people are overtly racist (although some of them are). It means our social structures benefit white people.
So what can a mad white mom from the suburbs do? How do we raise children who will work for justice and equality, who will reject their privilege or extend it to everyone?
I don’t have big or great ideas. I have little ones. But I’m going to try them and hope they help. And I hope you’ll share your ideas for teaching our children as well.
1) Read children’s books with black protagonists. My community is pretty white. My son has one black classmate. My daughter thinks the African-American baby on the diaper box is Rudy (daughter of our friends the Huxtables, who are South and East Asian). But I’m a big believer in familiarity being possible through art, too, and in that familiarity building understanding. So I’m going to get my children five books for the holidays that feature black protagonists. When I’ve chosen them, I’ll share the titles.
2) Give money to an organization that advances racial and social justice. It’s holiday time, when we all pick our charities. I’m always nagging you to give to preemies and lungs and hearts. This year, I also gave to The Southern Poverty Law Center.
3) Start talking about race and justice with my children early. Earlier than may be comfortable. I heard on NPR once that the average age at which black families start discussing race with their children is three, whereas in white families it’s thirteen. Because for black children it’s a fact of life and experience, but for white children, it’s an external, even intellectual exercise. It’s why kids can describe black culture but not white culture. White privilege again. But clearly the hippie love stuff–we’re all the same, yada yada–that we white liberals (or me white liberal) have always been fond of doesn’t work so well. We need to have conversations about race from an earlier age. I’m going to research this one, too. But if you have ideas, let me know.
4. Don’t stay quiet. I’m not saying I plan to get in a flame war on Facebook or a throw down at Thanksgiving dinner. But I do have to say that most of the people responding to Ferguson with dismay on my FB feed last night were either a) people of color b) sociology graduate students/professors or c) superpolitical people (and I DON’T think this is a political issue). But I know more of us care. We can share our thoughts without getting into fights. I’m going to try to do so.
5. Put more love into the universe in general. This is a goal toward which I’m always striving. Be kinder. Less gossipy. More tolerant. More patient. I’m trying to teach this kindness and generosity to my children, too. I’ll write about those strategies on another day, because I don’t want to detract from today’s goal of doing something about racism, however small, in my own white suburban mom way, in my own white suburban family.
Peace. Really, I mean it. Peace.
Today is World Prematurity Day. Obviously, I’m acutely aware of prematurity, and chances are, if you follow this blog at all, you’re aware of prematurity, too.
I have to be honest. I always have a bit of a squeamish reaction to prematurity awareness. That’s because one of the main goals of the day is to reduce prematurity. Now obviously, I’m all for reducing, nay, eliminating, prematurity! But to suggest that it can be done feels like suggesting that Das Big Boy’s premature birth was somehow preventable if I had done something differently. Prematurity prevention often talks about getting mothers prenatal care, and of stopping pregnant women from smoking and/or using cocaine. I’m here to tell you that I had topflight prenatal care, and that I didn’t have so much as an Advil before I was admitted to the hospital with PPROM. I took my bedrest extremely seriously, both at home and in the hospital. I only ate pasteurized cheese. I didn’t touch soft serve or smoothies. Or penne a la vodka. I didn’t clean a litterbox between 2010 and 2014. I was ridiculously, overly careful. And I still had a preemie and a baby who I managed to get to 36 weeks and 3 days which felt like an elephantine effort for not only me, Herr Husband, and Das Big Boy, but also my parents and Nanny Sunshine, not to mention a cadre of talented medical personnel. So preventing prematurity isn’t always possible, no matter how hard we try. And sometimes suggesting that it is fires up that tiny voice that wonders if I could have done something differently.
That isn’t to say you shouldn’t love the March of Dimes and give them money in Das Big Boy’s honor. Please feel free! They’re the ones who helped get the surfactant developed which enabled him to breathe. They conducted the research into the betamethasone that grew him the paltry lungs he had at birth so he could survive. And they fund research into PPROM’s causes, and many other issues associated with prematurity that could have helped me, Das Big Boy, and our many preemie pals.
But rather than talking about preventing prematurity, I want to think about how we can respond to it. The doctors and the organizations like MoD have the medical research and stuff covered. So we can think about the personal responses. And this is really my advice for how to support anyone going though a stressful situation: preemie, sick kid, sick parent, illness, what-have-you:
Be present. Give presents.
Call to check in even if you think the person wants some space. Send texts. Emails. Leave voicemails. Don’t expect to hear back, but be there. If you talk to the person, listen. Offer empathy. Hope, but not false hope. Support. Tell the person how awesome they’re doing (but don’t say you don’t know how they do it. They don’t have a choice. They just do), and ask what you can do. We loved when people visited the NICU (as long as they were healthy!). Our people treated Das Big Boy like a person who mattered to them, which helped him feel like part of our lives even when he was stuck in the hospital. Finally, don’t hide from even the scariest or saddest situations. I know my friends who’ve lost children love the opportunity to talk about those children, to be reminded that they existed for everyone, not just for their families.
And send something, if you can. I’ve written about this before, but people sent us stuff for Das Big Boy even before we knew if he would survive until birth. That meant more than I can express to this day. That people believed in him enough to send him a little outfit (Thank you still, A and M!) still brings tears to my eyes. When something is so uncertain, tiny tangible things mean so much. It’s why we took multiple photos of him every day that he was in the NICU. It was, I think, our way of proving that he was there, that he existed.
Friends also sent stuff to support us and keep our spirits up. Cupcakes delivered to the NICU. Gift cards for grocery delivery. A couples massage. Having our team care for us enabled us to care for our little dude. And it reminded us that we were part of a larger world that loved us.
Prematurity isn’t all tragedy. We loved Das Big Boy more than we thought possible. We celebrated his milestones (His first ccs of breastmilk! The first time we held him! His attempts at nursing! When we had to change his incubator because he had such an explosive poop!). We held him, cuddled him, read to him, and sang to him for up to fourteen hours a day. We befriended our nurses, doctors, and staffers, and of course the other families (and we celebrated their babies’ milestones, too!). The NICU became our community. Our home.
And during our 114 days in the NICU, Herr Husband and I also had a lot of laughs. We wrote songs like “Could be Gas, Could be Sepsis” (ok, it was a whole musical called NICU, the Musical), perfected our imitations of some of the NICUs characters and acted out scenes with them, and played a weird version of “chuck, fuck, marry,” in which we had to select a staff member to hurl from the window, one to bring to Boston, and one to leave at CHONY. We imagined setting up nurses with our friends and decided whom we would want to go for a drink with or invite to a party. Even when you’re miserable, misery doesn’t define you. You be you.
The last thing I think we can all do for World Prematurity Day is something to thank the best humans on the planet, NICU nurses. If you’re a NICU parent, you can do something to thank those nurses. Send them a treat. Donate something to the NICU that they can share with their patients. Write them a letter with a picture of your kid. And if you’re not a NICU alum, and you want to do something, you can still donate something to your local NICU. Or to the next best people: teachers or therapists or doctors who work with NICU alums. Looking for a new charity? You can give money to the Center for Healthy Infant Lung Development (CHILD) Clinic, or the Home Oxygen Parent Exchange (HOPE) program, both at Children’s Hospital Boston. These are the places in which Dr. Larry Rhein works his magic, helping preemies learn to breathe, and even more sweetly, to play. The HOPE Program is Larry’s passion project, where babies who are on germ isolation can take a music class safely without worrying about the common colds that could send them to the hospital. And where their parents can make pals with other folks who’ve had this strange introduction to parenting: (blue babies, plugged in babies, boob-to-pump-to-pump-to-belly, etc.)
So Happy World Prematurity Day, or something like that. Thanks, as always, for following our journey. Prematurity doesn’t define it anymore, but I do appreciate the opportunity to remember and reflect. Thank you for giving me the opportunity to do so.
Wow, this blogging every day thing is difficult. Not as difficult as spending 114 days visiting your kid in the NICU, but still.
Something all parents know is that going off of daylight savings time sucks, because your kids just don’t give a shit. They’ll wake up extra early just to spite you. They’ll get whiny and cranky as the day wears on, then still refuse to go to bed even though seven is the new eight.
Some college friends and I had a brief Facebook comment chat about this subject last night. I lamented that what we once referred to as “the rage hour” had tragically been converted into the hour I am filled with rage because my children are awake. Now, after a mug of hot cider and rum in front a delightful fire that Herr Husband built (because oh yeah, it snowed here today), I am about to fall asleep while blogging. Das Big Boy, however, is playing elevator operator in his room, and has also unspooled an entire roll of easel paper and flung it about in some sort of giant TPing experiment in which he is both perp and victim. Except I’m the victim because we know who’s going to have to furl that crap.
So that’s all I really have to post. My outfit isn’t noteworthy because I didn’t leave the house today, which hasn’t happened in months and was quite pleasant (thanks, HH!). I do have one noteworthy photo of DBB from a birthday party he attended with his father. The photo is significant because he LOVED doing the zipline and because last year when he attempted it at a party at the same venue, he lacked the strength to hang onto the bar and enjoy the ride. Always fun to see the many little ways in which they’re growing up. Even if those ways don’t include relishing the extra hour of sleep daylight savings could afford them. Sigh.