Max, sweet boy that he is, asked if I needed coffee this morning. “Probably, but we’ve got to go.” We had an early doctor’s appointment, a 3-hour blood draw at the endocrinologist. I heard him muttering “probably” to himself as I got our shoes on and hustled him into the cargo bike for the 15-minute ride to the medical complex.

An hour later, he’d been given a whopping dose of growth hormone and half a bag of saline in exchange for the first 4 vials of blood. The IV failed during the second round of blood draws, and, after 3 horrifying attempts at restarting an IV, they called it quits and rescheduled us for next month.

My role in this is to prep him for the appointment: no food, lots of water, bring toys, wear comforting clothes, tell him over and over what’s going to happen (it will hurt for a few minutes when they put the needle in,) and what we’ll do afterwards (eat meatballs!)

And to be there during the appointment: count to 20 to let him know what’s coming and when, hold his sweat-slick body down, hard, so that his thrashing doesnt make the needle slide past the vein.

To murmur soothingly that it will be over soon, and to forget that it won’t, really, ever.

We’ve done the best we can today, and we’ll do the best we can next time. It will work, probably.

In the meantime, I don’t yell at the nurses (it’s not their fault,) or at Max (it’s not his fault,) but I do want to yell.

As ever, the frustrating thing is not so much that I have to do things that are painful and hard, but that I have to hear myself say things like “I need time for self care.” So annoying!

I don’t want a fucking pedicure! I want to not want a fucking pedicure!

But actually if there’s a mani pedi salon that includes massage and will let me just screamshout FUUUUUCCCCKKKK! the whole time, sign me up! Sounds healing.

In the meantime, I’m yelling it onto the internet:

Goddamn this goddamned genetic flub!

Fuck fighting about me time!

Stupid tiny needles that aren’t small enough? I hate you!

Fuck cotton balls! Fuck you, cartoon bandaids!

Bullshit waits in the waiting room? Fuck yyyooouuuu!

Expired insurance cards cluttering up my wallet? Get stuffed!

Oh, you already are stuffed? Ha ha, ok thanks for that.

Now I’m laughing. Whew, I feel better.

Thanks.

Sometimes his life is like this…

and sometimes he gets to ride on Frida’s magic flying stick! He loves it! All told, he has a good life.