It's not a perfect system, and although I didn't expect my house to become instantly organized or anything, it would have been nice. But it's kind of better than I expected, which certainly counts as a bonus. I withdrew Emily from our beloved Elementary school last week, after a meeting that was originally intended to set up a 504 plan. But than kind of plan supposes your child will actually be IN school, whereas Emily hasn't been to a complete week of school since before Christmas break, and hasn't been to any school at all in I'm not sure how many weeks. My newest mantra is, "This isn't the reality we wanted, but it is the reality we've been handed, so we're going to rock it." And rock it we have.
It's too late in the year to officially enroll Em in the same homeschool as Sasha, but I did have budget left so I managed to order some stuff for her for the end of the year and the summer, since Sasha will have to do some school over summer. These kids have three awake modes: Play, Learn, and Feel Crappy. You can combine the fist two, but the last one trumps all. Since they spend so much time in FC mode, we have to sneak Learning in whenever possible, summer be damned. And if I can get a jump on second and fifth grade, so be it. The plan is to homeschool Em next year as well, barring a miracle of course. The problem with neurologist appointments and trying new levels of new medications is that you have to wait forever to see if they're going to work. And lately, they don't. And suddenly six months have passed and you're not any better. In fact, you're worse. Shoot.
Which brings up one of the main problems with our lifestyle. Aside from dealing with daily pain and illness, how in the world are we supposed to find enough routine to function? I've been wrestling with that one for months now and am just barely starting to figure it out, thanks to Emily officially homeschooling, and my own head being just slightly better enough to think. It means having all your alternate plans ready at any given moment. It's having primary, secondary, tertiary goals, and being completely fine with dumping them all to take care of disaster/s, and then jumping back in to some combination of those goals again if by chance one, both, or all three of you start feeling decent, good, or amazing. Many times a day, every day, without breaks or vacations. And it's not nearly as easy as it sounds.
All your alternate plans for all your goal levels take energy and effort of course. And switching between them also takes energy, as does explaining what happened and why to your kids who are in various states of fits and exhaustion. This lifestyle leaves little time for anything else but breathing and coping. We don't see friends or leave the house much and we have to be ok with that right now. It's not the reality we wanted, but it is the reality we've been handed, so we're going to rock it.
Now that we've embracing homeschool for both kids, we're having more nice moments. I don't have to call Em's school every damn day and have the same sad conversation, or worry about picking up work. And now that I'm officially her teacher, she has to do what I tell her mathematically, mua ha ha...I can't complain tho, because she's into math, reading, and science so I'm not sure what more I could ask for in a student. It's still a struggle due to fatigue, but I'm sufficiently used to struggle. I mean, we're still figuring a lot out, and I didn't get to all the things I wanted to today, but I have learned you can't stress about it. I'm not always going to have a migraine and neither is she, and on the better days we'll do more. Plus I'm learning how to sneak things in, how to make it easy to shove knowledge into their heads and what works for us.
I guess to be completely honest, I have felt a lot more supported lately. A big stressor has elsewhere been lifted. The girls' dad got his head out of his anal region several months ago. He sacked up, parted ways with his heinous she-bag of a baby-momma, got a second job and is almost out of debt, and is even in counseling voluntarily for the first time in his life. He is hellbent on getting his family back and I am not inclined to stop his pursuit. Our friendship has always been intact, and he is addressing every other concern I always had. And I am raking him over the coals about our wretched piece of crap marriage, make no mistake. But certainly there is room for redemption, and he is showing shocking signs of growth and maturity. Shocking. So, this would be new, because everything we had before was garbage. But best of all, he is investing in the girls' lives, and being extremely helpful when he comes to visit. (Like I said, shocking.) I am stuck between too tired to be terribly excited and "For f***'s sake, FINALLY!!!!!" We have a big fancy date coming up, pictures to follow.
So...yeah. Sasha continues to have near-constant face rash, but it's lesser as long as I don't give her compounded corn-free Naproxen which is hell on steroids in a bottle for whatever reason. And we don't have a follow-up until the end of next month so we're kind of just hanging with everybody's garbage stomachs and rashes and pains and occasional huge accidents and bouts of vomit. But we did just explore the molecular structures of both caffeine and ibuprofen, so that was fun. And the girls' dad is participating in their lives and in my life, pretty much like never before. He will accompany us to our next UCSF appointment. Oh, he also introduced mom and I to our new favorite beverage, hard root beer. His reputation around here is improving.
No comments:
Post a Comment