Ain't It Fun
Remember I said that I'd get back to my son's chronic illness... Get ready for the best and LEAST sexy parenting post you've ever read. Also, if you've never heard this Paramore song, go download it now. You're welcome.
It's never a dull moment in the life of parents, and when you add in a chronic illness (particularly those hidden ones friend, amirite?) you get a fantastic mixture of that good old working parent guilt, anxiety and the joy and stress of being an emotional support blanket for your child who has whatever pain or discomfort comes with their illness. That last one may or may not last for a while, and depending on the child you may never get to do it. It's an honor to be a child's rock (and of course when all you want to do is curl up in a ball and sleep for a few years can be stressful too). We are living through a bit of a golden age of support groups and disease marketing (my own description) where we can make rare illness and hidden illnesses more visible. That's a whole post, I won't do it justice here. But to say, the things you deal with daily may be easier with a community to lean on. It doesn't mean it's easy in the US to deal with financial and career pressures. From my understanding, a few places or communities in the world get it right and as my sage Tina Fey so aptly puts it, "I want to go there."
Focusing on your child and their needs can be a scrambled game of staying positive but realistic, what ANTICIPATED days off can you plan for, and how many sick or "vacation" days can you take (or work through) before having to have some hard talks with your employer. And that is 100% privilege talking right there because too many of us do not have the luxury of working and having paid time off or have to base our ability to work on their needs so maybe you're living near poverty levels because you can't work or have to be one of the many families depending on public assistance. In this case I say take every damn cent you can from any program you can get it from. Government support and subsidies are there for a reason and YOU SHOULD USE THEM! Call me a socialist or a bleeding heart, but you can't call yourself a civilized nation if you starve or bankrupt your vulnerable populations. I'll wear that badge proudly all day, every day. Burnout, while I am very thankful it is getting it's day in the sun with COVID, is a constant. Mental and physical exhaustion will take it's toll in many ways. Mysterious stomach issues you never noticed before, insomnia, a short fuse, or difficulty in wanting to do anything the second you have a chance to. Friday night becomes a GLORIOUS time for us to sleep and just relax, I've made my bed my sanctuary. So the idea of "self-care" while it sounds fun is an added pressure for those of us that care constantly to just make it all better for ourselves. Resilience is also a great marketing ploy, but isn't always possible. Breaking down and rebuilding is where you eat my friends. Eventually if you don't reach out or have a support system, just like that perimenopausal skin, you lose your elasticity.
Do NOT mistake this post for therapy. When they say you have to do the work, you have to do the fucking work. But if you get a glimpse into a new world, or perhaps you can relate, I've met my goal.
-Til the last drop, N
