Progress is being made, but it feels like I’m walking through waist-high molasses much of the time. I can see what needs to be done, and I’m aware that I’m moving forward, but it feels like it’s taking for-fucking-ever, and nothing really seems to change.
I wake up tired each day, whether I’ve slept 6 hours or 8, and wonder if I’ll be able to accomplish anything of substance. Will I be able to motivate my daughter to get up and do anything? Anything at all? A bath, maybe? Empty the dishwasher? Get dressed? Sometimes I can tell right away that there’s not much point to prodding her, she’s just going to dig in her heels, and keep her ass planted in her chair.
This is not at all where I thought I’d be at this stage of my life. Of course, it’s not where I thought my daughter would be, either. None of us could foresee the shitstorm that epilepsy would unleash on our lives, how it would completely turn our lives inside out, and put a giant question mark on our entire family’s future.
Now that she’s 22, and we have a president who wants to gut insurance protections, and eliminate the ACA, we’ve gone forward with applying for Medicaid for our daughter. Our plan had been to keep her on our employer funded plan as long as possible, but we feel our hand has been forced, and we can’t take the chance that Rachel could be uninsured. So, she was approved for medicaid, which will be her secondary insurance, until/unless she losed other coverage, and then it becomes primary. That is, IF our esteemed leader doesn’t manage to gut the Medicaid program to the point that the state coverage is damaged.
Once again, it’s two steps forward, one step back. We try to do the right thing. We don’t want our daughter to be a drain on the taxpayers of our state, or our nation, but her well-being comes first. We continue to do what we can to help her move forward, hoping that someday she’ll able to care for herself, but trying to prepare the world around her for a future that includes Rachel needing state support and services. I can’t even imagine what would happen to her if her father and I were no longer here. We have family who would take her in, but they haven’t had direct care of her, so have no idea what it takes to keep all her appointments, meds, doctors, insurances, etc. straight.
I would love to have an income, but needing to be with Rachel all the time makes that almost impossible. I do sell on ebay and Bonanza, but it’s spotty, and I don’t always have the time to manage that as efficiently as I would need to, in order to actually make money at it. I also applied for the part time phone support job at Amazon, but after having the application accepted a couple of months ago, I haven’t heard anything else. I do wonder if I’d actually be able to manage more than a few hours a week at that, anyway, but it’s nice to dream.
Hell, I’d love to be able to go shopping by myself, when I want to, even in the middle of the week, without having to worry about leaving Rachel at home, which we can’t do for more than a quick trip to the neighborhood grocery, nevermind leaving her long enough for me to go clothes shopping. I have to save my shopping trips for the weekend, when the crowds are the worst, and even then I make the trip as short as possible, so I can get back home, and quietly resent my life. It sucks.
I wish I could laugh about all this stuff, but it’s just too immediate, and too huge. I miss the days when Rachel was still in school, and we felt like we had all kinds of time to help her become more independent. Now it’s starting to feel like she’ll never be able to live away from us, and we’ll all be stagnant together…forever.
So, that’s my uplifting thought pattern for today. I used to be such an optimist. Life is slowly, but steadily, beating that out of me. I miss that old me. I even put down the crochet projects I’d been enjoying so much. It might be time to just go pick it up again.