Max Laughs Too Loud

I learned German to shame the people who shush us in restaurants. “Wir sind frisch von Krankenhaus,” I say, “lass uns unsere Freude haben.” My accent is as perfect as I can manage, Hochdeutsch, slow and deliberate, and I maintain eye contact way past the point of their discomfort. “We are fresh from the hospital. Let us have our happiness.” My joy is precious and if you try to steal it I will cut you as deeply as I can without my kids noticing.

We made it 8 months without a hospital visit, the longest stretch yet. This time it was something that could be classed as an accident: a playground stumble, a tumble, a bonk on the head. But you don’t hear the words brain bleed without getting a little bit desperate for the good times, even if he probably doesn’t have one and you probably won’t have to rush back for a too-late brain surgery because you tried to take him home for monitoring instead of staying at the hospital like they told you to.

We’re out of the woods now, recovering, drinking kale smoothies for breakfast and planning our afternoon treats. I know that Max is more likely to have these incidents because of his macrocephaly and poor motor control, and I make myself remember that he’s also more likely to have these because he has friends to roughhouse with and a school to go to and can get up enough speed to fall down hard.

I’ll do my yoga, I’ll get my sleep, I’ll talk to my loved ones and feed myself well and I’ll glory in the moment. If you’re a casual bystander who thinks you need to make my kids fit your expectations of how children should express their pleasure in public, though, I might bite you in the fucking face.

HOBA UN WFP INKA

You know that birthday-morning feeling when you know you’re special and you know that soon you’re going to get presents and eat cake? All of that sugar and love and maybe champagne to look forward to, and not yet any of the stickiness or disappointment or guilt? That’s how I feel in this magical window between signing a contract for an absolutely kick-ass new job and actually starting the work. It’s a full-time gig, and it’s going to knock our household schedule for a loop. I haven’t worked in an office in more than a decade, and my office self-image of the hot young thing is about to get a brutal reckoning. This job will make me more sedentary, and more stressed; I worry that this might make me less outwardly loving to my kids, less healthy, less resilient. It could be awful, and it could be absolutely fantastic.

Starting Tuesday, I’m going to work for the United Nations. I’m going to work for the section that takes great ideas and makes them a reality: the Innovation Accelerator. Cutting-edge at the U.N., can you believe it?! The Accelerator is part of the World Food Programme, and I am so excited to meet my colleagues I could go vegan*.

Betsy Rosenbaum

Head of Business Operations

United Nationas World Food Programme Innovation Accelerator

*this isn’t really an expression, but it feels to me like my new comrades might have some really exciting ideas about how best to impact the world’s future and I am here for them! (My family’s sustainably, humanely raised pork being the obvious exception, along with game that someone I know shot. And bugs I inhale during bike rides, I guess?)

Truth in Advertising

Imagine a family where the parents worry they might be failing at life, the daughter just faked her mom’s signature on a note home from school to avoid getting in trouble, and the son has life-threatening heart problems.

Ready? Here they are!

Life’s not perfect but it’s pretty damn good.

The Tart, Today

Enough drama, let’s talk about food!

You are someone who can make a meringue. The trick is to come up with a plan for it after it’s cooked. Dry and hard? It’s a cookie! It’s crumbles to put on top of a fruit compote! It’s the top layer of an elegant parfait! Or did it turn out sticky? No, it’s marshmallowy! Stack it with some berries and cream and it’s a pavlova! Too sticky to stack? Dollop it with lemon curd, stick it in the freezer, and slice it into something gorgeous! This combination of enthusiasm and creativity, along with wilful ignorance of rules related to tradition and language, is why I’m such a hit in Germany. Also, my sarcasm.

God, I miss winking and people who wink.

If you live in Munich and you want a perfect tart, you go to the French bakery on the corner and you buy one. If you live in Western Colorado and you want a perfect tart, you carefully assemble ingredients, painstakingly follow instructions, and end up with a really gorgeous tart. If you used to live in Western Colorado and now live in Munich, you can’t possibly compete with the local bakery and are thus free to make an imperfect tart! Hurrah! Throw some nuts in the food processor, then some butter, sugar and salt, pour the flour in straight from the bag, add cream cheese if you think you remember that in a recipe from 10 years ago, give it a whizz, and dump it out right onto the Silpat on the baking sheet. Give it a quick mix with your hands, roll it out, plop some fruit on, fold the edges over, sprinkle on some sugar, and bake it (at the temp the oven automatically turns on to) until it smells great. If you’re nervous about the texture, eat it while it’s hot with some ice cream or yogurt. If it looks like the bottom got cooked through, let it cool until it’s sliceable. You can let the kids fold up the edges and put it in the oven and watch it bubble up and when you eat it together you are so proud of yourselves! It is yours, this tart that you made with your wisdom and patience and forgiveness and care, and there will never be another one exactly like it: the things we know right now, the fruit that is ripe today, the kids who are home from school and willing, they all change.

I have a little happiness hiccup every time I think about how I might feel when I reflect back on the memories of excited kids peeking into the oven window at our once-in-a-lifetime tart. At best, I’ll miss them after they’ve left the house. At worst, well, it will be the worst. Either way, it won’t ever be like this again and, even though we just ate that tart yesterday, I miss it already.

Wondering, Wanderung

At some point in the future, I’m going to look back and wonder if I did all that I could to help Max. The tricky thing is that helping him sometimes means taking him sledding, too far away from the heart hospital to make it back in time, and staying too long and playing too hard and feeling like a real family again.

Screaming with laughter through chattering teeth is one of the best things about being alive, being human, being a Rosenbaum.

My sister says that you don’t have to go camping very often to be a family who camps. Going sledding a few times means that we are a family who has fun, a family that enjoys nature, a family that can talk about maybe going next weekend if the snow is still deep.

When Max has a heart episode, it will likely be in the morning (as his previous night’s meds are wearing off), likely at home, likely with at least a few spaces available in the ER, likely with me present and ready with my overnight bag and deep breathing techniques for when they start the IV. I’ll probably be healthy enough to stay with him in the hospital; Tobias and Frida will likely be allowed an occasional visit. Max has a good chance of living through emergency surgery. The chances are slim of him having The Big One in those few moments per month that we’re sledding. The chances are slim that it will happen while I have a light cold that keeps me out of the cardiology ward, or that it will happen when Frida is minding him on the playground while I run to the bakery for snacks.

With all of this balancing, though, at some point things are going to fall. When they do, we have to remember why we made the choices we made: we could wrap Max in a blanket and put him in a box for safekeeping, but he’ll spend eons that way after he dies and this is the only time we can take him sledding.

Also, I’m 4 years late for a mammogram

You know that feeling when you get back from your son’s emergency cardiology appointment and give your 9-year-old daughter a really hard time for not getting her homework done while you were gone, forgetting that she’d offered to pack snacks for the appointment in case you had to go to the ER and she’d been waiting the whole time to see if her brother was ok?

Or when you are an angry feminist, outraged about the incredibly unequal division of household labor during the pandemic but you STILL MAKE YOUR HUSBAND’S VACCINE APPOINTMENT FOR HIM?

I’m having those feelings, sure, but the guilt and the anger are really at their best when they’re layered over a sucking sense of dread and futility.

All of the eye patches I put on Max won’t make his heart work better. All of the strategic planning meetings I run won’t give us another medicine to try before this one stops working*. The growth hormone I give him to help him get stronger might be making the heart issue worse. The time I spend in the waiting room at his occupational therapist’s office isn’t making any memories I’ll cherish after he’s gone.

I know I’m doing the best I can, but I still don’t think I’m doing it right.

*maybe I’ll look back on this post 10 years from now and Max will be 18 and we’ll all be fine, but today I just found out that his last-chance medicine isn’t working so well anymore, and we can’t up the dosage, and the only reason I’m not rending my garments and cursing the gods is that I don’t want to waste a single moment in case this is the best time we get.

TK

When Max walks in to his audiology appointment on Monday, he’ll be wearing a mask and an eye patch and glasses. He’ll be loaded up with two different heart medications and a shot of growth hormone. Poor little guy, more machine than man, dragged from specialist to specialist. But he’ll also be wearing suspenders and a bow tie because it’s a big day and he’s a kid who likes to look sharp. He’ll be carrying his new first grader’s magazine, and he’ll pore over it with all the joy of a brand-new reader. He’ll be humming something complicated from Wohlfahrt’s 60 Violin Etüden because that’s what Frida’s practicing right now, and he sits outside her room when she practices and sings along with her playing, even if it’s scales. He’ll have ideas for places to go afterwards, for treats to eat, for things to notice and questions to ask and jokes to make.

Society’s investment in Max is absolutely absurd and absolutely wonderful. Thank you, thank you, thank you.

How much is too much?

Despite writing about me me me on this joint for years, I am shockingly unaware of my own thoughts and feelings. Last week, when I looked in the trash can and saw a recyclable yogurt container that I threw away the day before, I knew that I was feeling a bit hopeless about the future. If a glimpse at my phone record shows that I haven’t called anyone but doctors in 3 days, I realize I’m putting off sharing bad news with my loved ones.

Good news, then, as I review this week’s purchases:

An inadvisable amount of chicory, fresh sauerkraut, lots of leafy greens, and some new vitamins. I must want to feel healthy and alive!

A new book, a subscription to a literary magazine, an upgrade to my website’s hosting services. It’s as though I intend to be smart and creative all at once!

Potted bulbs. Oh, the newness! The growth! The beauty! The great hope that comes with blooming flowers!

Tickets for Brass Band Yoga at the Hofbrauhaus in Munich in May. I might be a little manic. That’s a helluvalotta hope right there.

Still, better to be filled with hope, art, and wonder than to burn the world down one yogurt cup at a time.

May your Friday be filled with small joys and the time to notice them. May your disappointments be met with placidity rather than anger. I joke about the far-fetched nature of my ridiculous plans, but damn it feels good to be hopeful.

Oh, Max

We’re having some concerns with Max’s heart lately: the walls are getting too thick too quickly, and he has a new type of tachycardia that his rescue medicine won’t work for. Rather than send that train of thought into a tunnel of darkness, let’s think of this:

Max is fairly committed to being a robot. He has me press a button on his cheek to open his mouth to eat, and enter a code on his chest to get him to unfreeze or to change into pyjamas. He issues terse instructions and narrates the goings-on at the playground in a deep little robot voice. This morning, as we were getting ready to brush teeth, Max the robot crawled into my lap and said, “Out of battery. Need to go to docking station.” Then he snuggled right in and I tried not to let my leaky eyes cause any rust or electrical damage.

I don’t know how long his little life will last, but oh boy is it a good one.

Who am I?

New town, new year; it’s time to reflect! I try hard to do the right thing, and sometimes I wonder if I’m kind of a supercilious asshole. Let’s cut me down to size, shall we?

I am a feminist, and an armpit-hair feminist at that, but I’m also the kind of feminist who has had 10 electrolysis treatments make sure that my body hair isn’t too off-putting. Yes, electrolysis hurt. Yes, I’m embarrassed that I couldn’t just confidently rock my natural state. Yes, I would do it again. I still make a statement every time I raise my arm, it’s just not quite so stinky. My leg hair is long, and subtle. My bikini line is… more human than humanoid.

***

When I walk into the sun-filled kitchen to find my young son singing along to Emmylou Harris*, I just watch and listen and cry as silently as possible. “If I needed you, would you come to me? Would you come to me for to ease my pain?” My throat hurts just typing the words.

***

I’m halfway through a 30-day yoga program and it is wonderful! I’m stretchy, my posture’s improved, and it’s only now dawning on me that, at the end of this thing, I’m not going to magically have 22-year-old knees. If I can’t undo the damage of 2 C-sections, 4 knee surgeries, and 10 years of side-sleeping with 30 days of yoga, it’s permanent. Turns out my favourite feeling might not be flexibility, but rather hope.

*he sings the Emmylou part of the Emmylou/Don Williams version. He thinks that Dolly Parton is, and I quote, “Wow! Fancy.”