Mari's Midnight Garden

I know I’ve gotten lax about blogging again lately, and I’d promised myself that I wouldn’t do that. But I wonder after being at this for eight years if I’ve just not finally fizzled out? Then again, I’ve never been a ‘personal blogger’ and don’t really want to be. I know people who put everything on their blogs. I just can’t do that.

Granted I’ve blogged quite a bit about Thomas’ kidney disease and surgery and stuff, but I’ve not blogged everything about it. Since I got my ADHD preliminary diagnosis in June, I started blogging a little bit about that, but I’ve not blogged everything about it, either. Some things are just intensely personal, and I just can’t put that stuff out there. Other people can and often to, but they’re not me.

That being said, that in a nutshell is probably why I’ve not been blogging lately.

Since Thomas moved in with us in June of last year, our lives have changed and have become full of challenges. I haven’t and won’t be blogging about everything involved with that, either. Until the beginning of this Summer, I didn’t have the time or the energy to engage in my normal daily routine. I did what I was able and kept up with Thomas; that’s all I could do. Also by then, my therapist and I agreed that my depression had spiraled into the need of medication and that I needed more help than she could give me. I’ve blogged a bit about that, but yet again I won’t be blogging about everything about it. What passes between me and my therapist stays between us. And unlike how some people are so willing to do, I won’t be talking about my therapist by name here, either. Some people do; that’s their right.

This may sound really mean and hateful and ranty. But my private life is private, and I intend to do what I can to keep it that way. People who post absolutely everything, I’m sure they still have bits and pieces of their private lives that they’d never dream of blogging about.

Now. I said all of that because I want to say this.

Having Thomas here has never meant to be a permanent living arrangement. The plan and goal from before he moved in was to get him into assisted living housing just as soon as possible. This has proven a lot more difficult than I ever imagined it could be. It’s slow going. But as of May he was put on the SCL waiting list as “urgent need”, backdated to March. Honestly, though, his chances of getting housing will be greater if I can push him onto the “emergency need” list, which I’m fighting tooth and nail to do. It’s involved bunches of visits in various medical offices and the endless collection of copious paperwork.

I mentioned the following on Twitter a couple of weeks ago and was met with tons of negative feedback that I just didn’t want or need. Like anything else in my life – more negativity received than understanding. Which is another reason I’ve put off writing this particular blog post. I was all fired up after the exchange to write it but had a migraine and didn’t feel like writing about it just then.

Like I said above, the plan has always been to get Thomas into assisted living housing. But it’s become clear over the last year that he also needs a guardian – and he more than proved that over this Summer. I’ve been keeping detailed records of his behavior and other things to back this up. So I’ve been gathering up even more paperwork and more endless appointments – including the petition I need to apply for guardianship. Luckily, about 95% of this paperwork overlaps, so I only have to make/collect copies.

This is what people on my Twitter feed were upset about. That I’m considering state guardianship for Thomas. A lot of people said, “That is such a difficult decision,” and became appalled when I said in return, “No, it’s not.” Then went off in a huff and didn’t give me any chance to explain.

See, I’m a Gwyddon, and I live in this place called Reality where some other people don’t seem to reside. They want everything all tied up in neat, pretty packages with neat, pretty bows, rainbows, and happy endings. Well, real life doesn’t work that way, and I prefer to be in it with my eyes wide open. And part of that is doing what’s best for Thomas and Tayler. And I always have.

I went through this same crap four years ago when I started testing to give Thomas a kidney. People couldn’t believe that I’d “do something like that” to myself, that I’d endanger my life and my health for my child. Just thinking about it gives me a headache. I mean, really. This is my child. If his left arm fell off, I’d give him mine. Isn’t that how it’s supposed to work? I was shocked and appalled when Thomas’ nephrologist told me that I’d be shocked if I knew the number of parents who never consider donating an organ to save their child’s life.

What’s best for Thomas in this current circumstance is a state guardian and assisted living – and I’m trying to acquire these for him. I don’t want or need this responsibility, for one thing. My mental and physical health have nosedived since this time last year; I can’t keep doing this. Besides, if I’m not healthy, I’m of no use to anyone else. Thomas doesn’t need or require twenty-four hour care, but he does require care during his waking hours for a host of reasons.

Because of his chronic nephritis*, he’s mildly mentally retarded – although I’m trying to get him retested; when he tested in high school, he tested in with an IQ of 69; when I had him tested last year, he tested in at 72. He also has Explosive Mood Disorder and is bipolar and has slight ADHD. (*he received a transplant because he had what they call “end stage renal failure”)

Thomas is unable and unwilling to take care of himself.

He will take his medication when he’s supposed to (he’s on eight different medications, by the way), but any responsibility for himself other than that, he refuses. He fights tooth and nail about taking a shower and putting on clean clothes. It’s been over a month now that he’s done his laundry and had clean clothes (because I no longer do his laundry for him). He refuses to clean up after himself (and doesn’t understand why Preston and I won’t hire a ‘maid’). He has no interest in ordering / picking up any of his medications. He has no idea how to make or keep his various medical appointments or when they are or why he’s going. He can’t manage his own finances; and while he owns a car and has a driver’s license, I feel he shouldn’t be driving at all.

And on and on. This isn’t even the tip of the iceberg, to use a timeworn cliché.

So, no. Making the decision for housing and state guardianship wasn’t hard. This is what Thomas needs. I can’t provide these things for him. I can’t keep up with him. He needs way more than I can give him on a daily basis. So I’m busting my ass getting the information together so we and the courts can find someone who can.