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.