Balance is one of those things that Pagans often talk about in terms that suggest it's a place you go, rather than a constantly changing state.
One of the things that most special needs parents eventually learn is that balance is an ever-shifting point of reference. It's something you strive for, but rarely something you actually achieve, because in a minute or two, a piece of eqipment will alarm, or your child will have a melt-down, or some therapist or doctor will call and change your carefully crafted schedule of appointments for this week, as if it means nothing to you.
It's often hard to remember, but we have to remember to factor our own needs into the balance equation. While we can ignore them in the short term....there are long term consequences to not taking care of ourselves. We get grumpy, short(er) tempered, and we're not at the top of our game.
And believe me, when you're coordinating 7 nurses, 3 therapists from one agency, 3 more therapists and a teacher from school, a pediatrician, and 5 specialists just for your child (not to mention anything you might need to do like work or your own health issues)....being on top of your game is a necessity.
What I've learned recently: if you want to have time for yourself, you have to plan it, and make it happen. And you can't plan it and then do the dishes....that's just not good self-care.
We're trying to work out how to get away for a weekend, or even part of a weekend. It means asking for help from friends and family, and scrimping nursing hours, but it looks like in March we might manage it.
I, personally, have realized that giving up my dreams of being an artist and business owner a couple years ago, while necessary at the time, was not a good long term self-care strategy. It's too hard to balance without a little something for myself.
So...I'm photographing jewelry and other art objects. I'm opening an etsy shop. Maybe things will sell, maybe they won't, but it's an inexpensive way to get my stuff out there. I've updated a couple of my old websites, and closed down the rest. And I'm making stuff again, which has always been a great source of peace for me.