Deja Vu

"I'm tired, I'm worn, my heart is heavy from the work it takes to keep on breathing"          Tenth Avenue North, Worn

Many of you who read here are already aware that Hope is headed into her third hospitalization in seven months. I know that everyone is eager for details, and worried about our sweet girl. My thoughts are scattered and disjointed, and I am so, so worn. This blog exists as a way to spread information to those who love our girl, though, as well as to be a resource for anyone who is forced to walk a similar path. So, in that spirit, I'm going to do the best I can with an update. Please forgive me if it sounds detached and robotic, or emotional and ugly. I'm stuck on emotional roulette right now.

After months of decrease in violent/homicidal thoughts, the last couple of weeks have seen an increase in these thoughts and impulses. We were unaware of this until a few days ago, at which time she felt like she was at about a seven on a scale of one to ten. She hates the idea of spending time in the hospital, but admitted that she felt that she may be a safety risk if we tried to get through the weekend and wait for her psychiatrist appointment on Tuesday. We feel like we could have handled her at home, with increased supervision, but we also know that if she ever says she's feeling dangerous, it is the right move to take her straight to the ER. She needs to know that we trust her on that, and that we take her seriously. 

Besides the increase in homicidal thoughts and impulses, we are looking at an additional very serious symptom. It's actually not new, but our knowledge of it is new. Hope is known for being honest about her illness, even when it's ugly, but she's been hiding something important. She has denied having visual or auditory hallucinations, but admitted on Friday that she does hear a voice. Sometimes she'll hear it a few days in a row, and sometimes not for weeks at a time, with no discernible pattern. She feels bad that she never told, but did so because she doesn't want to lose it. The voice told her that if she ever told anyone, it would go away. I can't imagine how a person wouldn't such an alarming thing to go away, but she doesn't. It is, in some way, comforting to her. She says she doesn't feel afraid/angry/sad/anxious when it's there. The way she describes it, though, it is a negative presence. It tells her that it won't make her kill anyone, but it will drive her crazy until she chooses to do so herself. It makes fun of her when she cries. It sounds horrible, but for some reason, she doesn't want to lose it. She has hidden this symptom, so that we couldn't take it from her. 

I am so proud of my strong girl for telling us about this... thing. She has such powerful impulses to stay sick. She knows that she's sick, and she knows that her brain isn't functioning properly, but she doesn't want to change it. Despite the fact that they go against everything that is okay in the world, and even against her own personality and nature, she does find the homicidal thoughts pleasing and amusing. She doesn't know why they strike her brain that way, but it's the reason she fought getting well for so long. However, she has finally been working hard in therapy, and trying to get healthy, even though it means losing parts of herself that feel pleasant within her mind. She's basically going on nothing but love for us, and trust in us that it's the right thing to do, despite it not feeling right to her. The voice is a similar thing, I guess. She likes it. She doesn't want to lose it. She has spent many months shielding it from us, so that she could keep it. But somehow, she found a moment when she was strong enough to break through and tell us about it. It is another step toward healing, and I am so, so proud of her for being strong enough to take that step. 

Unfortunately, this voice also tells us that she's sicker than we knew. We believed that her psychosis was limited to the homicidal thoughts, but now know that it includes a voice that she experiences as being someone other than herself. She does understand that it has to be coming from her own brain, and that it's a part of her illness, but the way she experiences it is as someone completely separate from her. I don't know what it means going forward, or how it will change her treatment. She already takes an antipsychotic, and perhaps something as simple as an adjustment to that med will help. I have so little experience with any of this that I just don't know yet how big of a deal this is. I also don't know if we'll be looking at a hospitalization of a week or two, like her others, or if we're going to end up looking at something longer-term. I can easily imagine them saying that it's just another manifestation of psychosis that we already knew existed, working to get her down from the higher homicidal place where she currently is, and then sending her home. I can just as easily imagine them saying that three crisis hospitalizations in seven months warrant a longer-term placement for more intensive treatment. I pray that I'll be able to trust their decisions and do what is best for her, because everything in me would want to fight a longer separation from my baby girl.

Let's get back to specifics of where we are now. We took Hope to the ER on Friday evening. Before her first hospitalization, we knew nothing of the commitment process, and were surprised at how long and exhausting it can be. We thought that getting through the hours in the ER, history, physical exams, psych consults, etc. would be the long part. At the end of all of that, if they recommend committing the patient, you move on, right? Nope. That's the beginning of the waiting. Once they've decided that someone should be committed, they start contacting facilities, looking for an open bed. If the patient is an adolescent, beds are hard to come by. There are too few facilities, and they're always full. In our state, there are only ten facilities that can accommodate a twelve year old. We were shocked to find out that it can take days to get in somewhere. Until then, you wait in the ER. They can't let a patient who is awaiting psych transfer go home, because they have to keep eyes on her at all times until transfer. They can't put her elsewhere in the hospital, because she's not actually being admitted to that hospital. You're stuck in the ER, and there's nothing you can do about it. You wait, and wait, and wait, hoping that some hospital somewhere has some discharges that day, and that your child is chosen for one of those precious spots. It is now Monday evening, and Hope has been in the ER since Friday evening. If anything were to happen today, it would have been earlier (because discharges are done early in the day,) so we are heading into a fourth night in this limbo. We're taking turns keeping one parent with her, and one with the little guy. Dad has been the hospital parent most of the time she's been there, because in a stressful situation, little man needs Mom so badly, while Hope is okay with either of us sitting with her. We don't actually have to be there at all; she has a sitter. (All patients awaiting psych commitment are assigned a sitter to keep eyes on them at all times.) But how could you leave your child sitting in the ER alone, for hours or days at a time? So, we do what we need to do, and we keep someone by her side. This is how we spent our weekend, our Mother's Day, our anniversary. Hospitalization is hard. Having our girl gone is hard. But I think that these endless ER stays are the most exhausting part of the process. 

If you feel led to pray for us, please pray for patience, for peace, and always for healing. Please pray for the doctors to make sound decisions, and for Hope to respond well to treatment. We appreciate the prayers, and the words of support and comfort far more than my feeble, fumbling words can express.