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.