Carrying On

"The story of my life: I take her home, I drive all night to keep her warm, and time is frozen." One Direction, Story of My Life

Man, would my kids hate that I used a One Direction quote; and one from a love song, at that. That one line just fits, though. They'll forgive me. 

Hope is home again. She was discharged on Monday, which was our best-case scenario. Med changes always require at least 4 - 5 days of observation, to see what effect the new med or new dose will have. When she finally transferred to a psych facility late Tuesday night, we knew that she'd be there through the weekend, at the very best. The fact that she's home now means that it was fairly easy to stabilize her this time. We are so, so thankful for the prayers that we know were covering her, and all of us.

So, let's start with good news. I've talked about the possibility of longer-term hospitalization, and was worried that this situation would lead to pressure to move that direction. Thankfully, that's not the case at this point. Three crisis hospitalizations in seven months is a lot, and in some cases that would warrant longer placement. In Hope's current situation, though, it doesn't necessarily mean that she's in a really bad place right now. She has actually been trending in the right direction, and making progress overall. It seems that she just needed a medication adjustment. Her previous dose of her antipsychotic was just not holding against her symptoms, and needed to be increased. She is responding well to that increase so far, and hopefully that will get us back on track. As long as we are able to keep her safe and stable, the plan is for her to be at home. She wants to be here, and we all believe that it is what's best for her. 

The not-so-great news is that she has more symptoms than we knew. We were well aware of the presence of psychosis. We knew that there were thoughts and impulses that are not in line with reality, or with her own personality. However, she has always denied having additional psychotic symptoms. As I mentioned in my last update, she finally admitted having a recurrent auditory hallucination. In addition, she has told of several more since my last update. There is at least one recurrent visual hallucination, as well as at least one more recurrent voice. There have also been at least a few isolated incidents, and at least two other recurrent voices that she used to hear, but no longer does. It feels like such a blow to hear of these additional symptoms, and to be honest, I'm struggling quite a bit right now. The more I learn about the depth of her illness, the harder it is to imagine a positive outcome for her. What I'm hearing from her care team, though, is that this isn't really different than where we already were with her. It's psychosis. It's just additional manifestations of something we already knew about. It is apparently common to see multiple manifestations. In fact, her therapist went so far as to say that she always wondered a little if she was holding something back, because she was a little surprised that she didn't have any hallucinations, given the level of her other symptoms. So, as scary and bizarre as it seems when you hear the specifics of it, she isn't necessarily significantly worse off than we already thought. We can't know how her illness will progress, especially because she is still very young for any of this. However, she is not in the territory of schizophrenia or schizoaffective disorder, or any of those things that my mind jumped to. That's what I'm hearing from the professionals, anyway. As a parent, it's really hard not to worry about things that sound so alarming.

I am, once again, humbled by this amazing girl of mine. I am so proud of the strength it takes for her to be honest with us about all of the things that are going on inside her. We are completely at her mercy, because we have no way of knowing what's going on in her mind, of course. We know only what she chooses to tell us. Honestly, she doesn't want to tell us anything. She's doing what is right, even though it doesn't feel right to her, based only on her trust in us. She is an amazing kid, and so, so strong. The doctor in her first hospitalization told us that he was truly amazed that despite the level of disturbance she's living with, she has never tried to hurt anyone, or acted out in any way. He said then that what we're looking at is "just a plain ol' good kid" with a serious illness. The doctor said the same thing at discharge this time, as did the social worker assigned to her case. Independently from each other, in separate meetings, they told me that she's a great kid. I've been hearing that her whole life, but it never gets old, especially right now. Obviously, most kids they see, and most kids with mental illness, have behavioral concerns. Those kids are no less amazing/beautiful/strong/smart/worthy than mine; all are broken, and all are struggling with things that no child should ever have to. However, it is still soothing to my heart to hear people praise Hope for being so helpful, respectful, hardworking, intelligent, well-spoken, and communicative. She has been dealt an incredibly tough hand, and she plays it with such strength and grace. I am amazed by her every day.

Where we are right now is pretty much where we were before this hospitalization. More worried, thanks to the additional symptoms? Sure. More worn down from the never-ending roller coaster that is life with a serious mental illness? Absolutely. Feeling battered and broken, and scrambling to regain footing? Unfortunately, yes. Essentially, though, we're where we already were. We manage her symptoms, and do our best to keep her stable. She takes meds. She sees her therapist (which we've stepped up in frequency, for now), and her psychiatrist. We do our best to be very watchful of her moods/actions/interactions/body language/activity level/sleep patterns/etc., while at the same time trying not to over-scrutinize every single thing she does or says, or keep her from being able to have and express a normal range of emotions. Post-hospitalization, we go back to our "regular" life, and do the best we can to be a normal family, living in abnormal circumstances. It's almost summer, and there is life to be lived, and fun to be had. Medical bills have probably ruled out a summer vacation, but there is sun and water, friends and family, amusement park season passes, and Hope has a birthday coming up. It is our job to give our children the best childhood we can, so we march on. We are carried by your prayers, held up by your kind words and support, and always, always grateful for your love.

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.