In Limbo

"When enemies are at your door, I'll carry you away from war, if you need help, if you need help. Your hope dangling by a string, I'll share in your suffering, to make you well, to make you well."          Gone, Philip Phillips

Another month has passed with no change in symptoms, and little change in circumstances. I'll try to catch you all up on what has happened since I last updated. I'll warn you that this is going to be long. I don't update all that often, and our life moves very quickly sometimes. I figure it's better to tell more, though, and you can read as much as you like. I'm breaking this post down into sections, to make it a bit easier to follow.

Since my last update:

Baby girl spent two weeks in the hospital. Three changes were made to her meds, and she showed no response at all. The only thing that was different this time is that she stuck to her commitment to be honest with us about symptoms, and didn't just say that she was feeling better to try to get out. Every day, she reported that she felt exactly the same as the day before. It was disheartening to see that she wasn't responding to med changes, but at least we got honesty from her this time.

Her discharge was pretty abrupt, and illustrates how difficult it is to get any help in our current mental health system. The psychiatrist assigned to her in the hospital was one who had treated her before, and we were comfortable with him and confident in his skills. He was not anywhere near ready to talk about her release yet, as she still had the exact same symptoms that brought her there. He was off for two days on the weekend, and she was seen by another doctor who also didn't talk about discharging anytime soon. Then, on Monday morning, her regular doctor had a personal issue of some kind and wouldn't be able to come in for a few days. She was assigned to another doctor was called in to cover, and this doctor decided on the spot (after reading her chart, but before ever meeting her!) that she'd be discharged the next day. He reasoned that while she was still hallucinating, she was no longer as dangerous. She came in with command hallucinations; specifically, her voice was telling her to kill people. Once in the hospital, it stopped saying that very often, and mostly told her to do things like lie about the voice, say the meds are working, get them out of there, etc. When asked about it, she said that it always says those things when she's hospitalized, and when she gets out, it resumes its regular stuff. However, this doctor said that because she was having few homicidal command hallucinations, he couldn't justify keeping her there. Despite the fact that we knew she was no better, and that her symptoms would return to their usual state as soon as she was on the outside, she was discharged. Her regular psychiatrist didn't agree with that move, and told us that if we had any hesitation about taking her home, we could just head straight to any ER. She still met all criteria for immediate crisis hospitalization, and would've been admitted. We felt okay just taking her home and keeping her well-supervised while we worked out the next steps, though.

What do we do now?
What we did get from the hospital is a strong recommendation for residential treatment. We knew it was coming. Her outpatient psychiatrist and therapist had both told us that we had arrived at that place, and we weren't surprised for the hospital psychiatrists to say the same thing. We have been unable to stabilize her for almost two years and she can't just continue this way. We have to do something, and there aren't really any other options. Her eight hospitalizations over the last eighteen months have all been in acute facilities, and they've done nothing for her. We were told to pursue treatment at a residential facility, which is a place designed for stays of months rather than days or weeks. It's heartbreaking for us to have to think about her being away for longer, but everyone who treats her agrees that outpatient is not enough for her right now, and that we must do something else.

The process:
Pursuing residential treatment has been a stressful and exhausting experience, and we're still not there. First of all, we were told that private insurance rarely approves it. We dove in anyway, with no choice but to try. We quickly discovered that, for one reason or another, none of the few places in our immediate area would be possible for us, and that we'd have to expand our search and accept the possibility of her being farther away from home. I made calls to many places, talked to many people, and found dead end after dead end. However, there were a few people along the way who were able to tell me that while they couldn't help, they could give me contact info for another person or another facility. I've been so blessed by the people who have gone out of their way to try to help us, when it was really only their job to say that we weren't a right fit for them, and could've just moved on from there. There have been more than a few people along our way who have made phone calls, sent emails, done whatever networking they could do to try to help this unique kid.

What we discovered was that even if a facility looked good enough for us to consider and was in-network with our insurance, we still couldn't get them to consider her. We learned that on top of criteria that patients must meet for admission, places also have lists of exclusionary criteria. In other words, if you have anything on that list, they turn you away. Once we knew to ask about that right away, we discovered that there wasn't a single place we could find that didn't exclude active psychosis. See, residential facilities are designed for longer stays, but are actually a step down in security level. The proper procedure is to use an acute facility to stabilize the person, and then, if necessary, move on to a residential facility to provide the additional support or resources they need before going back to outpatient. An acute facility should be able to treat and stop psychosis, and after that point, you can use residential treatment. What happens, then, when a person has psychosis that won't respond to anything, has been through countless acute hospitalizations, and still has psychosis that hasn't changed in nearly two years? The acute facilities can't keep a person for very long; they're not designed for that. Residential facilities can help with many things, but something as serious as current psychosis isn't their thing. The type of places that people would've previously called institutions, that were real hospitals designed for long stays, are almost nonexistent now, as it is believed that most people do best in community-based treatment. There simply is no place for a person like Hope.

A possibility:
After what felt like an endless series of doors slammed in our faces, we finally found a possibility. Through a chain of networking contacts, we found a person who was high up enough in an organization that he was able to get someone to agree to take a look at Hope's case. She meets exclusionary criteria for this facility, but the clinical director could choose to make an exception, so we hung our hopes on that. We put together a huge file of clinical data; her therapist wrote a long, exhaustive letter, and had a phone consultation to make our case for why she needs this; we went through channels higher than the ones that would've normally stopped us at the initial admissions screening. To our great relief, they agreed to take her... conditionally, though. That's one huge hurdle that has been cleared, but there are more.

Where are we now?
Unfortunately, it's not a quick or easy process. There are multiple steps of paperwork and red tape to get through. Right now, we're paused at the step where they have to get permission from both states for her to get treatment out of state. This is something that not every state requires, but this facility is one that does, so our longest step is waiting for two state agencies to approve it. After we get clearance from both states, we'll be getting pretty close. Well, except that one of the largest hurdles yet is still to come. We still have to get insurance approval. Now, I thought going into this that the insurance step would come early. That made sense in my inexperienced mind. However, the only thing they do in the early steps is confirm that your insurance plan does have coverage for this type of hospitalization. Actually getting approval comes right at the end, because once they get pre-certification, they have to admit within 24 hours. That makes sense, because how can you be certain that a patient still needs it if you approved them weeks ago? So, while I understand why it has to happen that way, it's stressful. We have gone through weeks of trying to find placement, jumping through hoops in the placement process, etc., and we won't know until the very end if our insurance company will allow it. She is such a unique case, with such a rare and severe illness that we are hanging on to hope that she'll be approved. We have a case manager with the insurance company, and she has already made notes in her chart about residential treatment being suggested, and why it's considered necessary at this point, and we hope that her advocacy will help us when we get to the point of actually seeking the approval. After that, there is actually still one more hurdle. They've accepted her based on the clinical data they've received, communication with her therapist, etc., but they have never seen her. When we have everything else in place, we have to take her to the facility (about four hours away), and have her evaluated there. They can still say, after seeing her, that their program isn't right for her. That would be devastating, as we have no other options in sight. Acute facilities can't keep her long enough to help, residential facilities don't want her, and long-term facilities are few and far between, and not a step we want to take right now anyway. Right now, all our hopes are on getting her into this facility.

Why residential?
So, all of that explains the process, but just what are we trying to do for her, anyway? I've had a few people ask me what we hope a residential stay will do for her. That's hard to answer. Our biggest hope is still that she will respond to medication. That really is the only way to manage schizophrenia. Before antipsychotics existed, schizophrenia was debilitating, and those afflicted with it lived in institutions. Antipsychotics are the really the only way to manage the psychotic symptoms, and even with those under control, most individuals can't live completely independently, thanks to the other associated symptoms. If we can't even control the psychosis, though, things get much worse. If you've been following us for long, you know that she's proven to be med resistant, and that we've already moved to using the one med they can use in some cases of med resistant schizophrenia. Even with recent increases, that is doing nothing for her. We're not hopeless yet, though. If we get the right doctors on our side, we can still increase her dose further. Her current psychiatrist won't, and at least one of the psychiatrists we saw in the hospital wouldn't. Some still will, though. It's tough, because this med is used so rarely, and almost never in people her age. However, we have to be aggressive in our treatment, because her illness is so aggressive. The longer a person is left in psychosis, the less chance there is of it ever responding to anything. We need to push this med as high as we can before we give up on it working. We realize, though, that at this point, it may not work. If we can't get the psychosis under control, then we have to teach her to live the best she can with her symptoms. The frequent and intensive therapy, and structured setting, of a residential treatment program is a starting point for that. I guess the answer is that we don't know for sure what we hope to accomplish. All we know is that everyone who has treated her believes that she is no longer okay to be only outpatient right now. We've been doing the exact same thing with no success for some time now, and all we can do is try something different and hope it helps.

How long?
The other question I get often is, "How long will she be away?" I wish I had more answers for everyone, but we really don't know. This is all brand new to us; while it will be her ninth hospitalization, it is the first of this type. The average length of stay at this facility is three to six months. It could be shorter, especially if our insurance company isn't cooperative, if they determine that she's not progressing there or isn't right for their program after all, etc. It also could be longer than that estimate, potentially up to a year. I really don't expect that, because I can't imagine our insurance company allowing it. They'll require the hospital to justify her continued need every seven days, and I can't see them approving it for too long. There's really no way to say, though. Everything about this is foreign to us. All I can say is that I hope she's home soon, but more than that, I want her to be well, and we'll do anything we can to strive for that end.

Gratitude:
I can't begin to express how thankful I am for all of the amazing people in our lives. Countless people have used their time and energy networking with everyone they know that might be able to help us. There have been so many instances of "my old college roommate/cousin/former colleague/church friend is in this field" and "I know someone who knows someone who I think might have some connections to something psych related." Hope's therapist and psychiatrist have both spent their own time and energy trying to find a way to help her. This time around, some really amazing friends took it on themselves to coordinate assistance for us, knowing that we're not ever going to ask for help from anyone. Friends set up a meal train, and we've had a few meals a week delivered to our home, freeing time and energy to focus on other things. Some really cool guys my husband knows decided to chip in and buy a new toy for him and little man, just to add some extra fun and levity to our home. A friend contacted our church (where we have only attended for six months or so, and therefore only know a handful of people, and have only spoken to the pastor and youth pastor about Hope), and the church put out an email to leaders of life groups. These groups have prayed for us, brought meals, offered to do things like yard work to help us out. Friends have offered to run errands, take the little guy for a while, etc. One beautiful friend, who was there right after I got a call from the hospital about the discharge we knew was too early, just cried as I told her. Is there anything more beautiful than that type of raw, honest emotion? Honestly, we've just been blown away by how many people have stepped up and offered to help shoulder our burden this time around. I'll admit that it has often caused me to feel uncomfortable. I love to pitch in and help others out, but I am really uncomfortable being on the other end of that. I'm doing my best to just feel the gratitude and dismiss the discomfort, though. The world is full of so many amazing people with beautiful hearts, and I am so incredibly thankful for each person who has willingly stepped into our chaos and offered to stand with us. My heart may be awfully battered right now, but it is also so, so full.

Prayers:
People ask how they can pray for us. First of all, every prayer is appreciated. Knowing how many are carrying our family in their hearts and pleading on our behalf is humbling. For those of you who like to pray specifically, we ask first of all for healing. We know that science doesn't have a cure for schizophrenia, but we know that God is bigger than all of that. We don't know what the plan is for Hope's life, or for ours, but we pray that if it is in His will, that he will bring healing. We ask for guidance. It's hard to know what to do in such unfamiliar territory, and Hope's case is so unique that we can't really even find professionals who know what to do. No one on her care team has ever treated someone like her, and our family has never navigated these waters, so we live in constant uncertainty of what to do next. We ask for peace. We are exhausted, and still so far from anything that looks like rest. We ask for patience. Answers come slowly, and sometimes not at all, and it is so hard to just wait, when all we want is to know how this is all going to play out. We ask for prayers for our sweet boy, "Isaac" as he is known on this public blog. I don't talk much about him here, as he's not as comfortable with sharing as Hope is, but he has again been struggling. This is a hard life we're living, and while he sometimes seems to take it all in stride, he has been hit with some very difficult periods as well. We're in a hard time now, and ask that you keep him in your prayers. Lastly, as always, pray for peace and comfort for Hope. I can't imagine living just twelve normal, healthy years, and then having your mind turn on you. I can't imagine learning that you have a very serious illness that significantly decreases your chances of ever being able to care for yourself or live a normal life. I can't imagine being essentially a bystander to your own life, as you watch everything around you and inside you change, and finding yourself unable to change it and too detached to even care most of the time. As hard as it is to be us, I can't imagine how it feels to be her.

Thank you all, once again, for being a part of our story. It's a crazy life, and I would understand if people ran from the chaos. Some have, but more often, people have willingly stepped into the chaos. I am still blown away every time someone (especially those we've just met or don't know well) asks how they can love us, serve us, help shoulder our burdens. As I said before, our hearts are very full. <3

I'll try to update again as soon as we know anything newsworthy. We hope that there will be progress on the residential front within the next week or so, and when there is, I'll be sure to fill you in on the details. 

Upside Down

"She is made up of depths even the ocean couldn't fathom."

As many of you already know, Hope is in the hospital again. This is the second time since I last updated here. She was also hospitalized in late January, but it was just for a few days, and we thought it was just a brief hiccup. Right now, we are processing the fact that things are very different than we believed them to be. 

Have you ever seen a movie where you watch everything unfold, think you know what's happening, and then late in the movie, they throw something at you that tells you that nothing was what you thought? You have to think back and apply what you now know to everything you saw, and understand what happened now that everything is completely different than what you thought it was. That's where we are right now.

I've written before about different categories of symptoms -- positive, negative, and cognitive. I've explained that while negative and cognitive symptoms affect Hope's quality of life, and ability to care for herself, the thing that matters most is that we control her positive symptoms. Those are the things that can make her potentially dangerous, and those are the things that could force longer-term hospitalization. The good news is that positive symptoms are usually the ones that respond best to medication. If you look back at my most recent update, I said that the positive symptoms were responding well, and while it's not all we'd hoped for, it was the thing that mattered most. 

And now we arrive at the turn-everything-on-its-head moment that I told you was coming. Hope has just admitted to us that the voice she hears has never been gone, nor have the homicidal thoughts, though they vary in intensity. No medication, including the current one, has affected those hallucinations or psychotic symptoms at all. If you look back at her story, you'll see that we didn't know she heard any voices until nearly a year after the onset of her illness. If you remember, she said the reason she didn't tell us is because she didn't want it gone, and she knew we'd use meds to take it away. What we now know is that she immediately regretted telling us, because she really didn't want it to go. So, as soon as her meds were changed, she told us it was gone, and led us to believe that the meds were doing their job. She says she's always known that telling us is the right thing to do, even thought it doesn't feel right to her, and so she's always felt guilt about living a lie and hiding symptoms. That's why, a few months later, she told us that the voice and thoughts were back. She couldn't quite make herself tell us that they'd always been there, but we thought it had broken back through, and that we needed another med tweak to get it back under control. She's done that same routine, where she tells us it's back again, several times now. The guilt builds up and builds up until she eventually says she's hearing those things and having those thoughts again. This time, though, she fessed up to the fact that it's been a charade all along. For nearly two years, through half a dozen different medications and seven hospitalizations, this voice has been constant, and the homicidal thoughts, while varying in intensity, have been there.

Some of you may be wondering why this is such a big, catastrophic deal, rather than just the latest bump in our ride. Well, basically what has happened here is that we are becoming aware of the fact that we may not be able to fix this. She failed to respond to multiple atypical antipsychotics, and to combinations of those with mood stabilizers and antidepressants. Once she had failed multiple drugs, we were told that the chance of her responding to anything else in that class was very, very low, and that we had to make the move to the one thing they can use in med-resistant schizophrenia. We knew there was a chance she wouldn't respond to it, but more than half of people who have failed to respond to anything else do respond to Clozapine. We were cautiously optimistic. When she told us early on that the voice had completely disappeared, we were ecstatic! We had finally found something that would help our girl! When she told us a few months later that she was hearing it again, we just thought that we probably hadn't quite hit the right dose initially, and that it just needed to be tweaked. Sure enough, a quick adjustment was all it took for her to report that it was gone again. Except that we now know it was never gone. Even the last-chance drug that we were hanging all of our hopes on didn't work.

We're not done trying to help her with meds yet, but there are few options left. Going back to a regular atypical antipsychotic would be senseless. The options are to go higher on the Clozapine, or add another med in the hope that the combination would be better than the one alone. The admitting doctor we saw yesterday was not comfortable increasing the Clozapine any higher, and recommended adding a second med. That's as good an answer as any, and the med he recommended was one of the few that we might expect to be suggested, so that's what we're trying. This med happens to be one that she's taken before, and it didn't seem to help, so we know it's a long shot. But the way it interacts with the other one she's taking could be different than before. We know our chances of managing with meds are getting slimmer, but we always have hope.

I'm sure at least some of you are wondering what happens if the meds don't work. The specialist we saw last fall told us that some people just don't respond to meds. Sometimes, all they can do is take a person off of all meds, and because they can't eliminate the symptoms, they use therapy to teach the person to live with the symptoms. Even the most well-controlled schizophrenia is difficult to live with, and if you're a person who has to ride out uncontrolled schizophrenia, life is very hard. It's a disease of remission and relapse, and there would inevitably be some very hard times. With the severity of Hope's illness, it would be incredibly hard to just have to live that way. We've already seen cycles where she's gone completely flat and withdrawn, and been barely functional cognitively. If she is unable to be stabilized with meds, her life will be heartbreakingly hard. Unfortunately, it gets worse, though. Hope is a rare person whose voices are homicidal and who has homicidal ideation. If we have to teach her to live with her symptoms, it's not as simple as just teaching her to ignore a voice that narrates her actions, or to pay no attention to the two CIA guys that follow her around. She is now in her eighth hospitalization for being potentially dangerous. How can she ever live free, with a voice urging her to kill someone, and her brain telling her that it would, in fact, be fun to do so? She's never actually tried to harm someone, and maybe she never would, but it's a scary prospect. We've always known that our best bet is finding a way to make those symptoms go away with medication. Facing the fact that she just has to live with them would be crushing. I don't know what that might mean for her future.

I'd love to be able to let you all know what our plan is, but honestly, we don't have one. Her therapist believes that a longer-term hospitalization may be necessary. We're not talking forever, but a few weeks to a few months maybe. The case can be made that since she is sicker than we thought, more resistant than we thought, and less honest about her symptoms than we thought, we do need to do something bigger than we've done in the past. On the other hand, our insurance company can say that med changes and therapy can be done outpatient, and that she's not imminently dangerous enough to require in-patient. I mean, yes, her brain keeps telling her to kill someone. However, it's been saying that for a long time, and she hasn't harmed anyone. That may be a gamble they're willing to take. Right now, she's in the hospital. There is a possibility they'll say that despite this new information, she's not currently dangerous enough to need to be there, and send her home soon. There is also a possibility that they'll look at the bigger picture and decide that since we've never been able to get her stable, despite two years of our best efforts, and because she is telling them she's feeling homicidal, she needs to be in-patient somewhere for a bit. As strange as it sounds, those incredibly different outcomes are both quite possible. We're in a really uncomfortable limbo at the moment, as we wait for the doctors at the hospital to decide what to do. After they come up with a plan, we take that plan to her outpatient providers and decide if we agree, and if not, we regroup and figure out the best way to help her. 

I know this is very long already, but I want to address one more thing. I've mentioned quite a bit here about Hope's homicidal ideation, and that's not something I address very often. It's really, really hard to put that out there. While I want people to know what we're dealing with, and understand exactly why her illness is such a uniquely big deal, I don't want people to judge her. I don't want anyone to think less of her. Our Hope is an incredible person. Her heart is kind, but her brain is sick. These thoughts are not her own. I know that's hard to grasp, but it's true. A comparison that might make more sense is how a person with Tourette's might yell obscenities or racial slurs that they would never say otherwise. It's not proof of a closeted racist, it's proof that a malfunctioning brain is a very strange thing. Our sweet girl has a beautiful heart, but her own brain has turned against her and started telling her all kinds of strange things, one of which is how fun and amusing it would be to kill someone. It is important that people understand that she has never harmed anyone. It is important to me that people understand that they don't need to be afraid of her. No one who treats her is afraid that she's just going to publicly attack someone one of these days. Her thoughts of hurting someone are very specific, and she's been very clear that she would not just pounce on someone in public, where she'd be immediately stopped and apprehended. I promise you that I am not endangering you or your children if I bring her to a class or activity where you are, or if you see us at the mall. She is never left alone, even at 13 years old. She lives in a house where anything that could possibly be used for harm is kept in a locked closet. She sleeps in a bedroom with an alarm on the door, so she can't open it at night without alerting us. We spend every moment of every day thinking about and planning for her future, so that we can be sure that she, and those around her, are safe. Right now, though, we don't feel that there is any risk in letting her do the few well-supervised and well-structured things that she does. I wouldn't gamble with the possibility of her doing something I'd have to live the rest of my life with, and I promise you that if I thought she was unsafe to even interact in public, I'd keep her away. Please don't fear her. Please don't shun her. Her mind is doing so many very strange things, but her heart is good. Her life is a nightmare, and her illness is unfamiliar to most, but ultimately, she's just a 13 year old little girl. My heart is raw from discussing details that I know will make some of you recoil and some of you fearful, but I ask you to please try to tune your hearts to compassion, because that's what she needs most. 

As always, thank you all for the prayers, texts/calls/emails/messages, and offers of help. We appreciate each one more than you know. Sometimes it's hard to just keep breathing and moving forward, and we know your prayers are carrying us. Every kind word strengthens our battered hearts, and we are thankful for every single person who God has placed in our lives. 

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.