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.
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.
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.
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.
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.
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.”
Apparently driving your cargo bike to the farmer’s market two times a week for organic milk in glass bottles will not help you avoid being called into the 3rd grade teacher’s office to talk about how your 8-year-old is starting puberty.
Remember those ridiculously leaky silicone lids for the metal bottles that we used so that our precious babies would never touch yucky hormone-wrecking plastic? Ha ha ha.
I want a do-over. I want to trade in my anti-plastic sanctimony for a couple more minutes with my little kid. I want to give little 3-year-old Frida a bowl haircut instead of a smooth bob.
I know that this Christmas is hard with all of us in COVID lockdown, but I am so glad to have Frida and Max get to have all this time together. I’m worried that next year she’ll have grown out of playing with him, but right now she’s his very best friend. They sleep in the same bed on the weekends, whispering until they fall asleep. They wake up with plans and stories. She spends hours helping him read his first book. Their in-jokes and dance routines are too sweet for words right now, even if she wants time to herself in the afternoon to read her books about puberty.
As usual, parenting comes with largely-unfounded-but-crushing guilt and largely-unfounded-but-joyful pride. She’s growing into such a neat person, just faster than I thought.
They really do, and I am trying to figure out how I can help change our societal structure to show that. Board work, voting, re-educating myself on the language I use, the implicit bias I carry, the images and stories I share with my kids, lots of thinking and lots of reading.
When Max was hurting in the hospital recently, trying to fix symptoms of an unfixable syndrome, there were times that it felt like I couldn’t handle the sadness and the worry. It occurred to me as I was feeling sorry for myself and my boy that I was being ridiculously self-indulgent: he was getting the best care in the world for his particular condition, I have lots of love and support from family and friends, we weren’t worried about how to pay for it (German healthcare, hurrah,) or what to eat or where to stay. The most striking thing, though, was the luxury of being hurt by an unpreventable accident. There are so many moms in so many hospitals who are watching their kids deal with preventable injury: by poorly trained or poorly selected police, by the callousness and implicit racial bias of doctors, by social systems that don’t value black and brown lives enough to ensure that they have enough care, even enough food. It is absolutely enraging that, in a world where there are lots of good things, we are trained to think that some people deserve so much more than other people.
I’m rethinking the car I drive, the brands I wear, the food I eat, the way I spend my time, and, most of all, how acceptable it is to not talk about social injustice. The short story: not acceptable at all, not anymore. I am embarrassed by how much time I’ve spent just luxuriating in the benefits of being a white person in an inherently racist, capitalist society.
One blog post down, one world to go!
Word of the day: Hochbettverbot. As in, “Max, das reicht! Jetzt hast du Hochbettverbot!” (“Max, enough! Effective immediately, you are barred from the top bunk!”) Best delivered loudly from the top bunk in your most imperious big sister voice.
We are quarantining at home until we receive word that our COVID test results are negative. Max had a cough yesterday and, with heart surgery coming up at the end of the month, we went to the doctor to make sure it wasn’t anything that would benefit from immediate treatment. We (Max and I) ended up getting tested for COVID since we both had light symptoms. The doctor thinks that we have some other simple virus, but tested just in case. Anyone who is tested for COVID must quarantine until they have the (negative) test results, so here we are. Frida’s home with us because she would have been tested if she were with us (she’s had a cough and headache and runny nose.) It’s tricky, though: both kids are energetic and keeping them home when they’re almost perfectly healthy seems silly (they’re doing backwards somersaults right now), but if they are infectious they would almost certainly spread it to their school classmates, teachers, and after-school program team. Especially with cases rising so quickly in Munich that schools are likely to close again soon, it doesn’t seem worth the risk. This is how we control the virus, right? Have symptoms–>get tested–>limit contact until test results are back. When this doesn’t happen, the virus is spread. When it does happen, the virus is controlled. Easy peasy, and we’re doing home haircuts and holiday prep in addition to schoolwork at home, so it counts as a win! (As long as it ends in the next 48 hours…)
Frida, now 8, checks out cookbooks from the library and writes grocery lists. “We need marshmallows!” she shouts triumphantly. She knows she’s won. My capitulation pays off, though: she really can manage a meal by herself, and today she made fresh tomato sauce and (packaged) noodles for the family.
Cooking with kids is such a beautiful way to share stories and build on traditions. Today, I watched my daughter start her pasta sauce just the way I’ve taught her: by looking in the fridge for the right sized pan and cleaning out its week-old polenta.