Today I made a bunch of healthcare calls, updated shared calendar appointments, got a refund for college books and ordered 10 meds from two different pharmacies. Just wanted to give a shout-out to my friends who are extreme parenting/guardian-ing… what did you do today?
It’s hard to keep the balls up in the air, right? If you are doing it too, you know. In the coming years, I hope I get enough right so my kids know that I had their back, helped them become their own advocates and gave them the best chance to live the best life they can. Sometimes I’m “on it” and then there are times I am winging it with nothing but sheer adrenaline, Google and the correct emails of doctors.
We’ve been over here getting used to the idea of the impending next organ transplants (discussions abound about next steps) – 2 kidneys, 1 liver – into 2 humans. Kidney function for each of the kids is around 27% and as you know, more is better. One of them has been referred for transplant evaluation and the other one will be referred around the 20% function mark. To add another dimension, one is right at the age they start transitioning from the children’s hospital to the adult hospital transplant program, so that adds its own layer of issues, but mostly, it is watching and waiting.
It’s a lot, I know. Even when I’m not doing so great with it all, I am doing enough. Maybe you need to hear this today… if you’re in any of these same waters in which I swim, you’re doing great too. Even when you aren’t doing great – for whatever reason – you’re doing enough, and that is incredible. I’d say tomorrow will be another day, but for some of us, things might feel the same tomorrow for you, too. May tomorrow be kinder to you and the human/s you are helping and may they someday appreciate the tireless efforts you make on their behalf. Even if they don’t, please know, I do. I think you are amazing.
My pastor had a whole sermon about that word -“breathe”. Write the word on the back of my hand when I need to remember to Breathe.