Hope has been home for three days, and overall, it is going well. Her mood has been pretty stable. There have been some down times, and those times can be very low, but there have also been more ups than we've seen in a while. I don't know if one of her new meds is starting to make a difference, or if we're seeing a high from being home after almost two weeks away. Time will tell.
There are some things that are currently looking good. As I mentioned, she seems fairly stable the last few days. When she did have a really rough patch a couple of nights ago, she asked if we could go for a drive. This is huge, because she finds it very hard to ask for help, and letting me know that she needed a change of scenery to try to break her mood is a good step. Another positive is that she was able to feel better after a couple of hours, rather than having to just hold on and hope the morning brought a better mood. She has been hugging us, rather than just standing stiffly if we try to hug her, she has initiated some random hugs, and she has been saying that she loves us when we say it to her first. It's been probably six months since she stopped hugging or saying she loves us, and it is so nice to have that back again. I don't know if she's feeling somewhat better, or if she's just happy to be home, but either way, it's a good thing. Lastly, we have been pleased to see her enjoying some activities that she used to enjoy. For a couple of months, she often couldn't read, watch TV or movies, play video games, craft/build/create, etc. She wasn't saying that directly, but she would try an activity, and then quit after a couple of minutes, because she clearly just couldn't enjoy it. We may be the only parents in the world who celebrate video games and TV watching, but we have been pleased to see that she is doing those things, and seems to be finding some enjoyment in them. I understand, of course, that this list of "good things" are based on only a few days of observation. We may just be seeing a few good days in a row. We still celebrate the good, though, and hope that we are seeing the beginning of an upward trend. Even if not, we are happy to have good days with her.
Of course, there are still things that don't look so good. In the long-term, there is the uncertainty of such a serious mental illness. Especially given the early onset, and especially because of the psychosis, we don't know what the future looks like for her. Because the onset is recent, we don't even know that we've seen the whole thing yet. We may still be looking at the tip of the iceberg. In the present, and more immediate future, though, we're looking a few other tough things. One is the fact that her age may make maintenance difficult. The huge hormone changes that happen during puberty and menopause make those times especially difficult to control. It can be difficult to nail down a medication (or med combo) that works, when a person's body chemistry isn't stable. The other big, bad, ugly thing that makes her situation difficult and scary is that she isn't necessarily trying to get better. She feels like this is who she is. She understands that this type of mental illness has an organic cause, and is something that is technically "wrong" in her body, but she still insists that it's who she is, and shouldn't be fought. She says it's not fair to compare it to a physical illness, which of course should be fought, because a mental illness is all about who you are, how you think, how your mind works. It's one thing to say that a person's kidneys don't work right, or that their thyroid is malfunctioning, but it's a very different thing to say that a person's brain/personality/sense of self is wrong. When we tell her that it's not normal to want to hurt someone just for the fun of doing it, she hears us saying that it's not okay to be who she is. Despite all of our efforts to find a way to make her understand that these thoughts and impulses are not her, that they're what is stopping her from being her true self, she is still not in agreement. We are telling her, of course, that no one is saying she's bad or passing judgment on her. But she says that if we tell her that medication is supposed to take away parts of what she's currently feeling or thinking, then we're saying that Hope is not okay, and that only Hope-on-meds is okay. The meds are helping with the violent thoughts themselves, but not her view of them. She estimates that those particular, violent thoughts are present in her mind less than half of the time right now. This is down from being a constant presence. However, if you ask her, she still says that the meds are suppressing a part of who she is, rather than embracing that they're helping her. She has never been non-compliant with her meds (and we do watch her take them), but she says that if she were an adult or able to decide for herself, she might choose not to take them. It is very difficult to help a person who is not trying to get better, and it is terrifying to think of what the future looks like if she doesn't change her current view. I pray that medication and therapy will begin to change the way she thinks enough that eventually she will come around to seeing the help as something to embrace. Thinking of what is down the road if she continues to feel the way she does is just too much to take, so we'll continue to take it one day at at time.
I wanted to write a balanced update, but I don't want this to end on a negative note. As always, we have hope. And, most importantly, we still have Hope. I don't know what tomorrow will bring, but I know that today was a good day. Her mood was mostly mellow, and all well within the normal range of emotions that the average person sees in a day's time. Maybe one of her new meds is going to be more effective than the last ones, and we're seeing the beginning of that. Maybe not, and we're just seeing a couple of pretty good days. Right now, I'm just going to celebrate the good days. I wasn't three hours away from my child today, with just a ten minute phone call. I didn't spend my day in a hotel room, waiting for the hour and a half I could see her. I spent the whole day with her, at home, where she belongs. Not only that, but I saw her smile, and didn't once have the helpless feeling of watching her struggle with unbearable pain. Right now, that is enough.
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