Keep Calm and Carry On

"Hope is being able to see that there is light, despite all of the darkness.”     Desmond Tutu

“So, how is she doing?” That’s the big question of our lives these days. Honestly, the reason I haven’t updated yet is because it’s a hard question to answer. The very shortest version is that she’s better than she was, but she is still not well. If you have some time to spend with me, I’ll give you the fuller version.

Hope was in the hospital for 15 days. We knew hospitalization was coming this time, but it was still chaotic, at least in the beginning. We thought they'd work out a plan for starting the new med, let us know the details, and we'd just head on over and check her in. What actually happened is that when we met with her psychiatrist, she determined that Hope more than met all criteria for an immediate crisis hospitalization. (Really, she never should have been discharged while as symptomatic as she was at the end of her previous hospitalization. We knew this when they discharged her, but that doctor was the single one we've seen in all of this who we felt did not care for Hope properly. That's a different story for another day, though.) On this day, we were supposed to see her regular psychiatrist for the first time since the specialist appointment, and discuss treatment going forward. What happened, though, is that she sent us straight from her office to the ER. There was no prior working out of details, no guarantee that the hospital folks would do what we wanted them to do... we just had to get there and hope they'd agree to help with what the specialist recommended. If not, it would have been a fight to get them to let her go, after they'd already determined that she was dangerous and needed to be committed, so that we could take her somewhere else.

Enter Dr. S. He took good care of Hope, and we liked him, though he wasn't exactly warm and fuzzy. He was bluntly honest with us and was very grim about Hope's illness, symptoms, and prognosis. He was alarmed at a particular manifestation of her psychosis. It's rare that it takes this form, and when it does, the person usually feels guilt and distress over it. She does not have those expected feelings, and is shockingly casual about some really disturbing stuff. He was alarmed at how loose her grasp on reality was, and at the length of time she’d been delusional without it breaking. He said that, quite frankly, if there were ever a case for a person to be institutionalized (which they just almost never do anymore), it would be Hope. He wouldn’t even discuss the topic of discharge until we could see whether she would show any response to this med. While all of that sounds bad, it told us that he understood the situation. If he hadn’t been alarmed, we would have felt that he didn’t have a proper grasp on things. Anyway, Dr. S. agreed to start the new med that the specialist and Hope’s psychiatrist agreed was needed. He wasn’t very familiar with it, so he spent time researching it. He knew that the staff wasn’t familiar with it (as she was in a child/teen unit, and it’s rarely used in this population), so he made sure they were educated. He had a pharmacist sit in on treatment team meetings during Hope's stay, so that they could get her input on things, and so that the entire care team would understand how to monitor her, what to look for, etc. I believe he was just the right doctor for us in this situation, and I am thankful that things went the way they did. 

Hope’s most serious symptoms have responded to the Clozapine. This is amazing news, as it was our last-hope medication after the failure of others. It is worth pausing for a moment to give thanks for the fact that her psychotic symptoms are much better than they were. She reports that she is currently not hearing any voices. (It’s important to keep in mind that she hasn’t always reported symptoms accurately, and has hidden things so that we couldn’t take away symptoms that she didn’t want to lose. However, we can only take her word for the things we can’t see.) There has been a significant decrease in the violent ideation. She also no longer believes that she’s stuck in a dream. Those three big things are the ones that we most needed to respond to this med, so that she would be safe enough to not require long-term hospitalization. In this way, the Clozapine has been a smashing success, and literally a lifesaver.

Why, then, am I unable to just say that she’s doing great? Unfortunately, it’s not that simple. There are many other ways in which she’s still not well. Despite the above, Hope is still psychotic, meaning that her grasp on reality is “off.” She can hold a coherent conversation, and look relatively “normal” on the outside, but if you go deeper, she has beliefs about the world that are simply not in line with reality. She is still afraid of being harmed by a particular type of inanimate object. She believes that all people believe the same things she does, and that the rest of us just suppress certain thoughts and desires due to societal pressure. (I’m not going to go into specific detail right now, but it is way outside the “normal” human experience.)

In addition to psychosis, a positive symptom, Hope still has a slew of negative and cognitive symptoms, though some have improved to varying degrees. (If you’re not familiar with the categories of symptoms, see my previous post or do a quick search on schizophrenia.) She does not have the extreme flat affect that she had a month ago, but she does have a blunted affect. She is still quite withdrawn. Not only does she not have a desire to be around people, she actually struggles with having to do so, and becomes agitated easily. (She has even stopped the one thing she had still been able to find some satisfaction in – volunteering at an animal rescue. The last time she tried, she stayed only ten minutes before calling me to come and get her, because she just couldn’t stand to be around all those people. In the weeks since, she just hasn't gone back.) She is oblivious to hygiene and personal care, and we have to make sure she takes care of herself. (We’re even on the verge of a shorter hair cut, because she keeps letting it get matted, and I have to brush it and take care of it.) She has no ability to start or maintain any activity whatsoever, and doesn’t find much happiness is anything. She still feels like her head is foggy, like she can’t concentrate on things like she used to, and we still have to allow her to do school work in small bursts that she can tolerate. Her thoughts still process completely differently than they did before all of this, and her vision is still “off” in a way that makes everything look sort of surreal. She forgets things easily, she doesn’t notice things around her (she’ll knock something over as she walks by, and it doesn’t even register, or something will happen that everyone else reacts to, and she’ll just be sitting there, oblivious), she does things that don’t make logical sense (last night, at dinner, she hollowed out a dinner roll and put soup inside, and then seemed surprised when she bit into it and soup went everywhere.) She is definitely not her old self, in really any way at all. One of the most frustrating changes is that she's irritable, easily agitated, and frequently snaps at people. Hope has always had a laid-back personality, and it is just not like her to be so unpleasant. Several people have commented that she is a teenager now, and I won't discount the possibility that it could be a part of it. However, she physically matured very early, so it's not like being hormonal is a new thing for her. And yes, she's also under a great deal of stress, with such a serious diagnosis and so many changes to deal with. I'm sure that's a factor as well. It's probably a combination of the illness, the teenagerness, and the life situation. I don't fault her for it, but it sure is difficult.

Despite all of that, there have been some improvements. In addition to the improvement in psychotic symptoms that I already mentioned, some of her other symptoms are less severe than they were. I mentioned that she doesn’t find much happiness or pleasure in things. That’s true, but not on the same scale it was. She had been mostly sitting around, just staring, for hours on end. Now she often plays video games or watches gamers on YouTube. It’s not as good as interacting with people, or getting physical activity, but we allow more than we would if she were healthy, because at least she’s not just in her own head all the time. She had been very, very quiet, and is now talking more than she was. She even initiates conversation sometimes, instead of only responding. It’s still not back to normal, but it’s something. And, hey, at this point, I don’t even know what normal is. The biggest thing to me is that she sometimes smiles or laughs. There was a period of time where she didn’t really, except for an occasional awkward forced smile. There are times now when she laughs or chimes into a conversation with a sarcastic joke or remark, and I’m like, “Hey, there she is. I know that girl.” She does have some good days, or at least parts of days. “Good” is relative, of course. She’s still a heartbreakingly different version of herself. I try hard not to focus on that, though. When my mind wants to focus on how sick she still is, I try to make myself remember how much better she is than she was just a month ago.

This is long already, but I wanted to also give you all an update on how she’s doing physically. She is tolerating the Clozapine really well. She’s on weekly blood draws for at least the next six months, after which point they’ll be able to space out a little more. She’s had various cardiac tests, and will repeat those in a few months. So far, her white blood cells look good and her heart looks good, and those are the big things. There are minor side effects, but she’s been on various antipsychotics for more than a year, so we’re no stranger to those. In all, it’s going very well.

I would love to leave you with more than an unsettled half-update, but that’s where we are. We don’t know if more time on this med will result in more improvement. It’s not uncommon to continue to see increased effect over the first few months. On the other hand, the onset pattern of schizophrenia is that it tends to worsen for a few years after the first break. She’s not even a year and a half in, so there’s a good chance we haven’t seen the worst of it. (That’s a scary thought, given that she’s one of the sickest patients who most of her care providers have ever seen.) Then again, most people don’t get treatment that’s this aggressive this early, and we hope that could mean we’ve headed off some of that. I can't tell you what we're looking at long-term. I've said before, and you all know already, that her prognosis is poor. The specifics of her illness don't give a very hopeful long-term picture. We're doing all we can, though. We're setting her up with every possible resource for success. Her therapist always reminds me that in any set of data, there are the outliers, and we're planning for her to be the outlier. It's all we can do. We have the realistic knowledge that even in her best, most stable times, she may not be able to be independent or care for herself, at least without significant support. On the other hand, if there's anything we can do to increase the possibility of her living the most normal life possible, we're all over it. 

I say it all the time, but we appreciate every prayer, every kind word, every bit of support from the people in our lives. We have essentially lost our child to this horrible illness, and now spend our time, our resources, our lives caring for what feels like just a strange, hollow shell of her, all while mourning the person she was and would have been. There are no words to describe the toll on us, or what a struggle life is right now. Knowing that she is loved, that our family is loved, is priceless. 

Pull Up a Chair

Get comfy, friends, this is going to be a long one. Since I’ve been such a cruddy blogger, many things have changed since my last update. We’ve had a couple more hospitalizations, a changing diagnosis, and a generally rough few months. I know that some of you have been waiting to hear how this week’s visit to a specialty clinic went, but most of you don’t know how we got to where we are now, so I’ll try to do a recap of the months since I last posted. I apologize for the length, but I’m going to try to give as complete a picture as possible, and not rely on myself to come back with the rest of the story later.

After Hope’s May hospitalization, we had a couple of months of relative stability. I am so thankful for that time we had to catch our breath. We never fully relax, and are always watching for the next big thing, but for a couple of months, we were as relaxed as we’ve been since this all started.

By mid-August, we were starting to see some breakthrough psychosis. There were a couple of visual hallucinations. Then she developed an intense fear of a particular type of toy. She had intentionally broken one at some point in the past (just humorously, at the time), because she didn’t like them. Suddenly, she became convinced that because she’d done that, they were all mad at her, and were going to take revenge. She could recognize that those types of thoughts don’t make logical sense, but it didn’t lesson the fear.

In early September, Hope had a huge break. She woke up one morning feeling like she was still dreaming. You know the feeling, right? You dream that you woke up, but you know you’re actually still dreaming. She was convinced that’s what was happening to her, but the problem is that minutes turned into hours, and then days. No matter what she did, she just couldn’t wake up. As time went on, she became increasingly afraid she’d be stuck in a dream forever. She didn’t tell us any of this until it had persisted for a week. (By her logic, we couldn’t be expected to help, we’re just the dream versions of ourselves, not real people. Eventually, though, she decided that if her subconscious had any ideas, they might come through the people who help her in real life. It makes weird sense, I suppose.) By the time she told us, she was completely panicked. The very first thing we always do is assess safety. She was unable to assure us that she wouldn’t try to hurt herself. She was not suicidal, and didn’t want to hurt herself in real life, but she was at risk of doing extreme things to try to make herself wake up. If pinching herself didn’t work, maybe she just needed to do something bigger. What stops a person who is 100% sure she’s dreaming from throwing herself out a window to jolt herself out of the dream? Because we feared for her safety, our only choice was to head to the hospital.

Let me stop for a moment and explain this dream delusion, because it is important stuff. You might wonder what would make a person suddenly become convinced that she’s dreaming. It was the result of some new symptoms. Her vision was “off.” She describes it as blurry, but not in a visually blurry way, in a surreal way. Her thoughts were processing incorrectly. She has always thought in pictures. I don’t think that way, so that’s a foreign concept to me, but she describes it as images or videos in her mind. That’s how all of her thoughts and experiences have processed, all her life. Suddenly, there were no pictures, only words, like someone transcribing the thoughts. Her mind also felt sluggish, like things were slower and more difficult than usual. In addition to the weird vision and incorrectly processing thoughts, she felt in some way separated from everyone else. Somehow, she wasn’t fully here with us. Taken all together, it’s not so hard to see how her mind interpreted all of these surreal experiences as a dream. Most of us would quickly move on and determine that something else must be wrong with us, after not waking up relatively quickly. Unfortunately, her mind is not healthy, and she was not able to move on to the idea of something being medically wrong. Delusions are not rational, and all of the logic in the world can’t shake them.

Now, what does all of that mean? Where did that odd collection of symptoms come from in the first place? Well, unfortunately, this puts us into the territory of schizophrenia. We were told in the very beginning that they were only guessing on diagnosis, and we would just have to see how her illness unfolds over time. They guessed it was bipolar with psychosis, then removed the bipolar diagnosis because she didn’t have the mood instability to warrant it, and called it just a psychotic disorder - nos (not otherwise specified) for a while. By this point, though, she had developed undeniable schizophrenia. In schizophrenia, symptoms are classified as positive, negative, and cognitive. Basically, positive symptoms are things that are not present in a healthy person (hallucinations, delusions, thought disorders, movement disorders); negative symptoms are disruptions of normal emotions or behaviors (flat affect, decreased pleasure in life, inability to begin or sustain activities, withdrawal from others); and cognitive symptoms are just what they sound like (poor executive functioning, inability to focus or concentrate, poor working memory.) Hope has everything I just listed, except movement disorder. The characteristics of her “dream” world – weird vision, sluggish and incorrectly processing thoughts, feeling of separation from people – are all part of this illness.

Let’s go back to the September hospitalization. We believed that they would change meds until they fixed the problem. In the past, we have controlled psychosis with meds. Sure, it takes time to find one that works sometimes, and even if you do, it might only work for a while. And sure it might only lessen the symptoms, not eliminate them altogether. But, in our experience, you can at least make things significantly better by just finding the right meds. They did tweak her meds there, but that did not fix or change anything. In fact, it was in this hospitalization that we learned, for the first time, that they might not be able to fix it. You see, our prior experience was with only positive symptoms. We learned at this time that while positive symptoms often respond relatively well to meds, negative and cognitive symptoms do not respond well. We were suddenly faced with the fact that we might not be able to get Hope back to who she was before. I am trying to stay unemotional and factual, so I can relay all of this information to you, but I can’t let that last statement pass without telling you that this is perhaps the most difficult thing I’ve ever faced… and we have faced an awful lot. While we arrived at the hospital fully expecting them to do something to fix her, we took her home unchanged. Being delusional isn’t a reason to be hospitalized. The only reason they can keep a person, really, is if the person is a danger to self or others. She assured them that she wouldn’t try to hurt herself, despite being agitated about being stuck in a dream, and they sent her home.

Once these new categories of symptoms developed, and we were faced with the fact that Hope has schizophrenia, we went looking for experts. Childhood onset schizophrenia is rare, and is something her regular psychiatrist and therapist have seen only a few times between them. They were both very supportive of us having her seen by someone with more experience. We found that a large university in our state has a specialty schizophrenia clinic. They only manage care of patients 16 and up, but were willing to do a consultation to help us confirm diagnosis, recommend a treatment plan, and advise her regular care providers on how to proceed. We counted down the days, hanging our hope on the fact that if anyone could help, it would be these people.

While we waited, Hope’s mental health took another hit. Despite being on a combination of meds that included her highest ever dose of an antipsychotic, she had a breakthrough of all previous psychotic symptoms. The voice returned. The intrusive thoughts returned. The visual hallucinations returned. And, keep in mind, all of this is on top of the symptoms I described above.

In early October, we had to do another hospitalization. (Hospitalization number five in just under a year, if you’re keeping count.) Only two and a half weeks after her last discharge, they readmitted her for safety concerns. Once again, they could do nothing but determine that she was stable enough not to be a safety concern, and send her home. It was three days – her shortest hospitalization ever – and she was the sickest she’s ever been. This time, though, they didn’t try to do anything. Med changes hadn’t helped last time, and they had no reason to believe that they would this time. We were only a week and a half away from the specialist appointment that everyone was so eagerly awaiting. So, they told us to watch her closely, and hang on until we could get to the experts.

That brings me, finally, to this big appointment that everyone in Hope’s world has been waiting for. It went well, in that we were happy with the doctor, and we got some direction. The doctor is an expert in this narrow field, and by far the most educated person on this topic that we’ve seen. Where most psychiatrists see schizophrenia only occasionally, her life’s work is research and treatment of it. She was able to confirm that Hope does in fact have childhood onset schizophrenia, and not an easy case – not only because of the early onset, but also the number of breaks, severity of symptoms, and resistance to meds. We expected her to say, “Oh, that med isn’t working; let’s try this one next.” She did not say that. Instead, she told us that the regularly available meds in the same class are likely not going to work. She has already shown resistance to more than one of them. She is on such a high dose of her current antipsychotic that her blood work is showing hormone levels being pushed triple the high end of normal, and it’s doing nothing for her. If we tried another one, it likely wouldn’t work at all. If it did, it wouldn’t be for long. Also, there’s a good reason not to try things that are unlikely to work… because the longer psychosis remains, the less likely it is to respond in the future.

She did have a recommendation, and she recommended it very, very strongly. There is one med that is used for med-resistant schizophrenia, and it is basically our only option at this point. I don’t usually share specifics of what meds Hope is taking here, but there is nothing else like this, and therefore no reason to be vague about it. It’s called Clozapine (close-uh-peen). The good news is that many people who don’t respond to other meds do respond to this one. It is a big step, though, and not one we take lightly. Clozapine is something that can’t even be prescribed by any doctor or filled at any pharmacy; both must be part of a special registry. Patients are also part of a special registry. A variety of tests must be performed before beginning treatment. Starting the med must be done in-patient, to properly monitor for some serious side-effects. The dose is started very small, and increased a little at a time, depending on how well it is tolerated. Once they reach the proper dose, we can take her home. However, she will have to have weekly blood draws for six months. If all is well, after six months she can go to having her blood drawn only every other week. If that goes well, after another six months she can switch to a monthly blood test. That will continue for as long as she’s on Clozapine. (That means either forever, or until they’ve found a cure. Unfortunately, with her resistance to other types of meds, it’s not like there will come a point where we can go back to something lesser. The good news is that this med has been around a long time, and they know that people can stay on it for decades.) Once we’ve started, we just stay on top of the monitoring, and stay crazy militant about med compliance and consistency. It has an extremely short half-life, and missing a single dose can cause rebound psychosis, which she told us can be many times more intense than anything you’ve ever experienced before. Mostly, we just hope that Hope is in the percentage of people that respond to Clozapine after everything else has failed.

What we need most from friends and family is support and compassion. I know there will be some people who read this and question whether or not we’re making the right decision with this med. Please, understand that we’re doing the only thing we know to do at this point, and that the decision was not taken lightly. If the above description of the seriousness of this med scares you, I promise you that as Hope’s parents, we are at least as scared as you are. The one thing that scares me more, though, is losing her. If she remains the way she is now, the chances that we lose her are very high. Schizophrenia is very serious, and childhood onset suggests a severe course of illness. Her illness has already shown to be very severe, and we don’t know if we’ve seen the worst of it. She’s med resistant already. Her first suicide attempt was at age 12. She believes herself to be in a dream, meaning that her actions don’t have real world consequences; and her voice has told her that killing herself will wake her up, and put her back into her real life. Everything about her situation is alarming. We don’t want to lose her. Not only do we not want to lose her, we desperately hope to regain as much as possible of what we’ve already lost of her. This medication is our best hope, and starting it as soon as possible gives us the best chances. We don’t have a start date yet, as there are a number of details to work out, but I will try to update when we know.

People sometimes ask how they can support us through rough times, and as always, we ask that you pray. If we cross your mind, feel free to let us know – those calls/messages/texts mean a lot to us. Also, please just give us some grace. We are not the best versions of ourselves right now. We do our best to keep daily life looking as normal as possible, for the kids’ sake. You still see me at all the same places, and doing all the same things, as always. I fear that I seem ridiculously moody, though. One day, I’ll smile and chat and make small talk, and the next day I probably look unfriendly and unwelcoming. If you ever feel like I’ve blown you off, or I hurt your feelings, please accept my apology. The same goes for Hope. She’s still involved in her regular extracurricular activities, but they take all she’s got. Interacting with people right now takes an extreme amount of concentration and energy. She tries to look like her old self as much as possible. This is an incredible effort, if you consider that she feels flat and withdrawn, she has to concentrate hard to stay engaged in a world she feels separated from, has to fake emotions because she has very few right now, has to use energy she doesn’t have just to spend a couple of hours out of the house – and on top of that, she’s sometimes fighting to ignore voices and intrusive thoughts. If you see her out and about, she is, quite literally, giving you everything she has. Please remember that.

I’m sorry this is so, so long. If you’ve managed to stick with me for this long, thank you. Knowing how many people love our girl, and are praying for her and thinking about her, is such a gift to us. The presence of each and every one of you in our life is a gift to us. Much love to all!

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. 

Yin and Yang

"So, this is my life, And I want you to know that I am both happy and sad at the same time, and I'm still trying to figure out how that could be."          Stephen Chbosky, The Perks of Being a Wallflower

Many apologies for letting this blog sit here without an update for as long as it has. I intend to update more frequently. Sometimes, I even gather thoughts and halfway compose posts in my mind when I'm just sitting somewhere. Honestly, though, I don't always have the emotional energy to try to put words to our experiences. I suppose the only thing I can say is that I'm sorry, and I'll try to do better. I know that people care -- I can see page views, so I know people check this blog; and I get messages/texts/etc. from people saying they came here looking for an update and didn't find one. Your love, concern, and support mean so much to me. I'm going to try to blog more frequently, and please feel free to poke me if it's been a while.

Our current situation is difficult to put to words. I can only tell you that Hope is doing well, and yet that she is unwell. Both are true. Both exist, not even alternating, but at the exact same time. 

Right now, I could honestly tell you that life is good. Hope and a friend are playing a video game in the next room, and I can hear the laughter and lighthearted conversations that signal a normal day in the life of a happy, healthy 12 year old. Right now, life has many of these moments. Hope is stable, for the most part. Daily life is pretty relaxed, and her range of emotions and experiences are well within the range of normal. Her meds are doing a great job of stabilizing her mood, and she describes herself as happy, or at least neutral, most of the time. I enjoy each and every one of these beautifully ordinary moments.

I could also, in complete honesty, tell you that things are not okay with Hope. While she feels okay on the surface, the psychosis is still present. Psychosis often comes and goes, but her psychotic thoughts have remained, unchanged, for approximately nine to ten months. This is quite concerning to her care team. The good news is that, probably because of the meds, she doesn't have the graphic, violent intrusive thoughts nearly as often as she did. She estimates that it happens every other day or so, for well under an hour at a time. (If you remember, in the beginning, it was all day every day. No matter what else was going on, those thoughts were always there.) However, the thoughts are the same. The frequency has decreased, but the intensity has not, and the way that she perceives them has not changed. She is not upset or scared by these thoughts, and does not feel guilt about them. She knows they're caused by her illness, but she considers these thoughts to be completely a part of herself, even though they are at odds with her personality and everything else about her.

Basically, everyone is very pleased with how well Hope's current meds have stabilized her mood, and how comfortable she is right now in her life. (And really, I can't overstate the importance of that. Within the last six months, this girl has been hospitalized twice, for a total of 18 days, for feeling homicidal and/or suicidal. Now, she describes herself as either happy or neutral most of the time. I can't say enough how big that is.) Nobody on her care team believes that she is currently dangerous. (We're not stupid, and we continue to be watchful and cautious. She has had these thoughts/desires for many months now, and never acted aggressively toward anyone. However, we know that she did at least make a plan to at one point. She believed that she could hurt someone at that point. She still believes that she likely could have done it back then, though even she says that she's pretty sure she couldn't hurt anyone now. Right now, we believe that's true.) The other side of this, though, is that we are in a last-ditch-effort situation with her therapy, with the very real possibility of needing to move on to a residential facility if no changes are seen in the near future. That would be heartbreaking, and honestly, I can't even process that right now. Hopefully, I won't need to.

Right now, we need to see some specific things with her therapy. I'll post about that another time, since I don't have time to get into it right now, and I want to get this posted. The important stuff here is that we are nearing the end of outpatient therapy, if we don't see some of the things we need to see. The next step is residential placement. We're not talking crisis hospitalization, like she's been through before. We're talking about longer-term placement. (Residential is a minimum 30 day placement, though it's often longer.) If that was going to be the best thing for Hope, we would do it. We'll do anything for her. I pray that it doesn't become necessary, though. 

I'll come back soon with more specifics. In the meantime, we appreciate all prayers. Please join us in celebrating the mostly ordinary days we're currently experiencing, and pray for progress and healing in the areas that are still very concerning. Blessings to you all! <3

Beautiful Boy

"And she loved a little boy very, very much -- even  more than she loved herself."     Shel Silverstein, The Giving Tree. 

I said in my last post that I'd write soon about my boy. So much revolves around Hope these days, but there is another who holds half of my heart, and who is affected by all of this. So far, I've referred to him only with phrases like "the little guy" or "baby bro," but I've decided to call him Isaac. This is not his name, just as Hope is not my daughter's name. (The internet is such a big place, and I feel safer not using their real names.) Isaac means laughter, and my little man still has so much laughter. He brings so much joy to all of us. <3

Isaac is nine years old, with light brown hair and blue eyes, and a light dusting of freckles across the tops of his cheeks. He is sensitive and thoughtful, funny and playful, and is the sweetest boy I've ever known. He is great with animals and little kids, and while he's shy around new kids, he will talk the ear off of any adult who cares to chat. He loves sports -- watching them, playing them, learning about history and statistics. He loves to cook, helps with dinner every night, and can make a few simple meals alone. He likes video games, swimming, roller coasters, comedy shows and movies, the Game Show Network (that one cracks me up,) and hanging out with his friends. 

Looking at the last five months through the eyes of my baby is heartbreaking. Home was stable and loving, and life was easy. He had an older sister who loved him fiercely, and with whom he had an amazing relationship. They've always been close, they don't fight or bicker like some sibling sets, and they have always really enjoyed each other. Then she started becoming distant. She wasn't mean to him, but would say she needed space much more often than ever before. She rarely wanted to play with him, would ask him to leave if he came in her room. His feelings were hurt by this change. Then the whole world fell apart. He woke up one morning to parents who had been up nearly all night, dealing with a crisis. We certainly couldn't pretend that nothing was going on, and so he was given a simple explanation about Hope having some very serious thoughts and impulses. All of a sudden, life is weird and scary. We're locking up household items that could be used for harm, signaling that she is potentially dangerous. We're making calls, making appointments, talking things over with relatives who are in medical and psych fields. We tried to keep things calm on the exterior, but he knew there was a lot going on. Hope didn't help things by being totally honest with him. She said that she didn't feel comfortable lying, and so she told him exactly what kind of thoughts she was having. She told him that she had gone out that night with the intention of finding someone to kill. (She has never actually attempted to harm anyone, and some members of her care team believe that she wouldn't have -- that leaving the house with that intent was, in itself, the escalation she needed. However, she firmly believed at that time that she could do it. The point, as far as this update goes, is that she told her baby brother that she was going to.) She told him that she had considered killing her dad and me before going out, but didn't because she couldn't do that to him. She assured him that she could never hurt him; she told us all in the early months that he was the only person she considered completely safe. But when he asked her to promise not to hurt or try to kill mom or dad, she said she would try, for his sake, but couldn't promise it. Imagine hearing all of that at eight years old. He became afraid of her. (She said that was the worst thing of all -- seeing how he looked at her with fear.) He became afraid for us -- that he would lose his dad and/or me. He became worried that she would someday attack someone and end up in prison, or dead. He started worrying that something like this could happen to him; after all, she had been completely "normal" before, and we had no signs that she would someday be ill. He mourned the sister he had always known and loved, and had to figure out how to accept, and learn to feel comfortable with this new person. He learned about mental illness, and saw it first-hand. He visited his beloved sister in a psychiatric hospital, and also saw other kids there who were ill in many ways. (We saw a few "incidents," and were once ushered quickly out of the unit when a child was throwing chairs and assaulting staff.) His life was disrupted by two hospitalizations, long drives back and forth, hotel stays, uncertainty. Life is far from the simple thing it once was.

Isaac has always been a bit more anxious than other kids. He needed time to warm up to new people and situations, and worried about things that some kids may never think about. It was all within the realm of normal, though. Sure, his anxiety was on the higher end of normal, but he was never unable to function, or crippled by it. It was simply a quirk of his. We just recognized that we would need to be sure that he was given plenty of tools for coping, so that it wasn't a huge factor in his life. 

With all of the recent changes in his life, Isaac's anxiety has become a beast. He can no longer be away from me. I can't leave the house without him, even just to run a quick errand. He is petrified that I won't come home. We've talked about how rare things like car accidents are, and how unlikely a fatal accident is, but he knows that they do happen sometimes, and he just can't bear the thought of losing me. (A friend from our old town lost his dad in a car accident back in the fall. This was a man Isaac knew, a really great guy, and it just proves his point that it could happen to anyone at any time.) In his mind, I am the thing that is most stable and most needed in his life, and he can't bear the thought of getting through all of this without me. He has concerns about losing his dad as well, but not to the same degree. He is also excessively concerned about his health. Every cough, sore throat, or stuffy nose could be a sign of something serious. Every unexplained bump or bruise could signal an alarming condition. We talk through these things, and he knows it's just his anxiety, but anxiety is a very difficult beast to tame. 

Right now, we are working on coping skills. We are not jumping to meds at this point; that would be a last resort. Isaac does great at communicating when he's feeling anxious, which gives us the chance to help him use his tools for dealing with it. Those thoughts come back over and over, so it's not like we're dealing with them to a point of resolution, but we are getting through each "flare-up," one at a time. He is sometimes choosing to challenge his anxiety by letting me go out for an hour or so without him. This is done on his terms, never forced on him, and I am so proud of him for it. Our goal right now is for him to be ready to attend two hour rehearsals by the time his theater group starts back up with rehearsals for the spring production. "Old Isaac" did things like this with no problem, but that seems like a huge goal at this point. 

This is a long, depressing post, so I'd like to leave you with the good things. This sweet boy of mine is happy. Clearly he's not relaxed and happy all the time, but he is joyful a remarkable amount of the time. He deals with panicky moments, but in between, he is himself. He laughs, he plays, he brings a lightness to everything. He is refreshingly open, which is so essential in us being able to talk him through difficult things. He has expressed negative thoughts (like "I know this sounds awful, but this is my life, too, and I feel like it's not fair how much it affects me.") I am as thankful for these as I am for the positivity, because it means that he isn't stuffing feelings, and he is feeling and expressing a proper spectrum of emotions. He says beautifully comforting things, too. (One day he said, "I was so scared and confused by all of this at first, and kinda mad too, but then I realized that even if I don't understand, God has a plan. Now I feel better about it.") He is a strong guy, stronger than I ever knew. I am so thankful for the laughter that he brings to all of us. 

I would very much appreciate prayers for my sweet Isaac. Please pray for comfort for his heart and peace for his mind. Please pray that his fear and insecurity will be replaced by feelings of safety and confidence. Pray that these trials will be used for good in his life, and are helping to shape the man he is meant to be.