Two Years

"Some days the memories still knock the wind out of me."

Two years ago today, my family spent the day at my son's first football scrimmage. We chatted with the parents around us, we cheered, we laughed, we soaked up some sun and fresh air. Sure, we had a newly twelve year old who had been pretty moody lately, and chose to sit under a tree away from the crowds, but hey, moodiness comes with that age, right? You roll your eyes and move on. We were happy. Life was beautiful. We had no idea that that very night, our life would change forever. We had no idea that that day was the last one we'd ever spend so carefree. If you know our story at all, you know that we didn't discover Hope's illness in a gradual or gentle way. What she had been living with for a while could no longer be contained, controlled, or hidden, and it exploded. Everything was ripped out from under us in a moment. We didn't fully understand what was happening, but we knew that life would never be the same.

Today, I grieve for that family. I'm sad for what happened to them. To us. I am hurt and angry and bitter. Some days I feel hope. Some days I feel sadness. Some days I don't feel much of anything at all. But today, everything in me is a screaming, thrashing, raging mess of pain and anger. And underneath that, there is a sadness so deep and dark that it threatens to swallow me. I wanted the world to know what our life is like, right? I promised to tell this story, because it needs to be told. Well, sometimes it feels like this. It's so raw and ugly and painful that I don't want to shine a light on it. I want to hold it all together, and show hope and positivity, and inspire others to feel those things, too. The truth, though, is that some days, I can't find that anywhere in me. Some days it's all I can do to keep putting one foot in front of the other, because the world is still moving, and somehow, I must keep moving as well. 

My life now is very different than the life of that woman from two years ago. There are psychiatrist appointments (at least monthly), therapy appointments (at least weekly), weekly blood draws, and weekly med pick ups. There are phone calls a few times a month to the psychiatrist's office, weekly calls to the pharmacy, and regular check-ins with Hope's case manager at Magellan (the contractor that BCBS uses for mental health stuff.) There are currently at least several weekly calls, emails, forms, record releases, etc. for the current attempt at getting Hope in with a specialist at a large university research hospital. (Before that, there was a similar song and dance for partial hospitalization, and before that, the attempt at residential. If it's not one thing, it's always another.) There are regular visits to Hope's pediatrician who helps manage and monitor the physical effects of the high risk meds. There is always, always at least one insurance or billing issue at any given time. (When you have as many things as we do, you are bound to see some mistakes. We've seen things as weird as bills accidentally put in hubby's name because they switched the patient and policyholder information, and a whole slew of ordinary things like bills being denied because they used the wrong code, or because they said outpatient when they were actually inpatient, or because they sent the claim to the wrong address.) When this happens, it's on us to make the calls to the provider and to the insurance company to find out where the mistake is and have that person fix it and resubmit, and it always takes weeks of follow-up calls. We have seen a schizophrenia specialist to help us determine a treatment plan, neurologists to check for physical causes for symptoms, cardiologists to watch for damage from high risk meds. We have support group meetings for families of individuals with mental illness. We have meetings and activities for my son's support group of children with ill siblings. Life is full of appointments, phone calls, emails, etc. 

Besides managing those things, my ordinary daily life is spent managing this illness. Schizophrenia used to be called dementia praecox, which means premature dementia. Because schizophrenia is unfamiliar to many people, I think many don't understand that beyond the hallucinations and delusions there is a debilitating illness that looks like dementia. I assess Hope's mood and functionality constantly. I baby-step her through her day, because she doesn't remember to do things for herself, and when she does remember, she doesn't have the oomph to make herself get up and do them. I have made charts and lists of things like self care and household chores. I repeatedly remind her to look at those things, because she won't without prompting. Then I go through each item individually, because even if she says she's done everything on the list, chances are she skipped over some things. Without my intervention, her hair becomes completely matted underneath, because if she does brush it, she only gets the top part. I'll find that she doesn't know where her toothbrush is, and then discover that it was never unpacked after her last trip to the hospital, and that she hasn't brushed in two weeks. I remind her that you have to think about the weather when you get dressed, because even if you love that shirt, it's not weather-appropriate to wear a long-sleeved thermal when it's 95 degrees. I'll point out that if she wants to wear short and a tank top, she might want to do some shaving. She leaves a trail of messes wherever she goes, because anything she touches is just left lying where she used it. I tell her that she has to come back into the kitchen and close cabinets after getting a snack, or close up the bread that she used and then left open on the counter. I tell her to pick up the nail polish that she used and forgot to close, which has now dried up. I check the stove if she uses it, because she doesn't always remember to turn it off. I peek into her bathroom to make sure the toilet is flushed, because it usually isn't. I remind her to put her seatbelt on, which she only occasionally remembers on her own. I remind her to close her door when she gets out of the van, because sometimes she just gets out and walks away. 

All of these things have to not only be done for her, but they have to be done in a way that preserves as much dignity as possible. She's 14 years old, and even if there are many ways in which we have to treat her as if she's 4, she should not be made to feel that way. It's a delicate balance, because she has special needs, but she does not have any intellectual or developmental delays. It's not like she has the cognitive capacity of a young child and wouldn't mind being treated like one. She is very much a teenager, but she's one who happens to be unable to function like others. We have to manage that while keeping her dignity intact. We may need to tweak or decline plans that would keep us out too late, because her sleep must be carefully guarded. We don't embarrass her by giving that as a reason, though. Her motor/planning skills are impaired, and it causes her to spill or drop things more often than others do. It would be condescending to tell her she's not allowed to use a regular glass, but it's kind of fun to let her pick out a fun Tervis or lidded cup. (I happen to carry a Tervis almost all the time myself.) She can't be left alone, but it would be embarrassing for her to have a babysitter at an age where other girls are babysitting. So hubby and I almost never go out together, and only leave her occasionally with our one local relative, because hanging with family is not being babysat and doesn't seem weird. If we're around other people, and I've asked her to do something that she has clearly forgotten, I'll prompt as casually as possible. ("Oh, I'm glad you didn't grab my purse from the van yet, because I also need you to get the such-and-such while you're there.") 

As you can see, caring for Hope is a 24/7 job. But, of course, that's not all there is. Adding all of this to our life didn't make everything else go away. I still have to do all of the things that everyone does -- I cook and clean and shop and manage our home and lives. Hope isn't my only child, I have two, both of whom I homeschool. School takes hours of our day, plus additional prep time and such for me. Baby boy plays sports, takes music lessons, acts in a theatre group, takes classes, belongs to clubs, and spends time with friends. Baby girl doesn't do as much socially, but does participate in youth activities at church and is the stage manager for the kids' theatre group. Our family volunteers. Hubby works 50 hours a week. I work as much as I can, though sometimes that amounts to only a few hours a month, depending on how our month has been. (I do computer-based work from home, and have the flexibility to work as much as or as little as I want. Our ideal would be for me to not work at all, but the medical bills never stop coming.) When I have spare time (as if!), I research, I read, I educate myself. 

Two years ago, my life was mine. Now, schizophrenia has taken over. In every moment, it is there. Over time, we have learned that it's possible to smile again. There are moments of happiness. They aren't the same as the carefree happiness we knew before, though. I posted the other day on FB that I had the best day. We went to a concert of one of the little one's favorite Christian bands, and he had so much fun, and smiled so big, and worshipped so sweetly. It was a great night. What I didn't mention was that Hope mostly sat there, arms crossed, looking annoyed, and then fell asleep. (Seriously. At a live concert. Asleep in her chair.) Even when we're happy, we aren't happy the way we were before. It will never be like that again. Our child has a severe illness for which there is no cure. At best, she will be "functional," which means maybe holding a part time job and maybe living alone, but with support. She will always need care. We will always worry. She has been both homicidal and suicidal, and I don't think I will ever take another breath without those fears somewhere in my mind. Even if she someday achieves stability that so far has seemed out of reach for her particular case, she will still not be "normal." We will never stop fearing for her. (And honestly, to some extent, we will never stop fearing her.) I am heartbroken for this life that is ours, and grieved for the one we used to have. I am angry at what each of the four of us has lost, and at what we must each bear. 

Life is just hard sometimes. And while I want to leave you with some lovely, flowery words, I don't have any today. I am just a mess of angst. This is life, too, though. This is real. This is raw. This is honest. Maybe sometimes we just need to see each other's ugly mess, so we can all be okay with the same in ourselves. 

Ever the Same

"She says nothing at all, but simply stares upward into the dark sky and watches, with sad eyes, the slow dance of the infinite stars."          Stardust, Neil Gaiman

Sigh. Where do I start? She’s slipping, folks. Over the past month, there has been a clear, undeniable decline in our Hope.

It’s been almost six weeks since my last update, and things are not as good as we'd hoped. Within weeks of returning home, Hope started having occasional hallucinations. It wasn’t big things. There was a visual hallucination one day, and then she started having auditory hallucinations a few times a week. Needless to say, we were disheartened. However, we know that some people respond only partially to antipsychotics, and will experience some psychosis even during their best times. That’s better than not responding at all, which is where we were for a year and a half, so we tried to hold on to the positive. At least there was some response. At least “the voice” wasn’t back, just some random, harmless hallucinations. We were cautious and watchful, though. It seemed that if she were going to experience any hallucinations, it would be the one that has always been the strongest and most stubborn. We expected that if any psychosis were to push through the meds, that voice would lead the charge. Her therapist agreed that it seemed strange, and we all tried to get her to admit that perhaps she was more symptomatic than she was telling. She denied. We observed. That’s all we could do.

The reason we focus so much on this one symptom, “the voice,” is that it’s the scariest. Because of the things it says to her, and because of the strength of its influence on her, she is unstable and potentially dangerous when it is present. When our last round of med increases seemed to finally stop it, when she cried and cried like a person who was genuinely grieving, that was the biggest moment in her illness to date. This one symptom makes the difference between her being safely outpatient or needing a higher level of care. We’re in a difficult place right now, though. She’s telling us that she’s not hearing it, but also saying that if she did, she wouldn't tell us. She bluntly says that she will never risk us taking it away again, and that she would lie if it came back. We have no way of knowing where we are. Maybe she’s not hearing it now. Maybe she is and always was. Maybe it did go away briefly when we thought it did, but quickly pushed back in as soon as her body adjusted to the new dose. We (her parents and her therapist) see indications that she may be responding to stimulus that we can’t see or hear. A couple of times, I've pushed pretty hard for her to just be honest with us, and she has even gotten teary and looked like she was thinking of saying something. She never does, though. Usually, she sits in stony silence when we try to discuss it. She knows that admitting to this symptom would likely mean hospitalization, at least for a while, and more importantly to her, she knows that we would do all we could to take it away. So, when we can get her to say anything at all, she says it’s not there. She continues to deny. We continue to observe. This is our dance.

Over the past month, we have seen an undeniable shift in Hope. It’s not just a matter of psychosis, or whether or not she’s hearing the voice. It’s an all-around decline. Schizophrenia is an illness of remission and relapse, so these declines are par for the course. We are always prepared for things to get worse again, because they always do, and they always will. Even Hope’s most stable periods are quite shaky, so we don’t get very high highs, but there is still a world of difference between those times and the lows. And the lows are hard, even though we expect them. At first, we hope it’s just a bad day. Then we hope it’s just a bad few days. Maybe she’s extra tired. Maybe it’s hormones. Maybe she’s not feeling well. Before we know it, though, it’s undeniable. Over the last few weeks, the change has been pretty dramatic. She’s become more withdrawn, more difficult to engage, more easily agitated when we try to engage her. It’s very difficult to get her to take care of herself, to complete household chores, to complete school work. (She will be schooling through the summer in order to complete this grade.) She looks vacant much of the time. She will sometimes just sit and stare for hours. She doesn’t initiate conversation, and responds as briefly as possible when addressed. She sits in her bedroom or our family room, declines our invitations to join the rest of the family, and leaves the room if we try to join her. I make her attend activities and get out of the house, but she strongly prefers not to, and usually isn't very pleasant while we're out. This is the most flat she’s been since last fall, and it’s just really hard to watch.

For privacy reasons, I don’t post pictures on this blog. I don’t even use her real name, I certainly don’t want to plaster her face all over the internet. I'll put a few pics on Facebook, though. If you're friends with hubby or me, you can take a look at what we're seeing. I don’t want to seem like I’m exploiting her in any way, but I really want people to understand what she’s going through, what this illness does. She holds together as well as she possibly can in public. She has gotten very good at appearing to be “normal.” She works with her therapist on appropriate social behavior. Besides that, she just doesn’t want to stand out (she’s 14, after all!) and she also isn’t willing to show weakness by allowing anyone to see her looking wounded. Because she does her best to hide symptoms, it’s not uncommon for people to tell me that they don’t think she looks unwell. I know that most people aren’t questioning my version of events, they’re just processing what they’re seeing. Sometimes, the phrasing even shows that they're complimenting her ability to be strong. Sometimes, though, the phrasing seems skeptical. People will tell me that she looks like a regular teen, or that all teens display the things she does. Those statements hurt me, because I feel like the person assumes I’m blowing this all up in my head. Perhaps that’s not at all what they mean, but it feels that way. I can assure you that we have far too many experts involved in her care to mistake typical teenage behavior for a severe mental illness. Beyond my own hurt over these statements, I want people to be aware that you can’t always see mental illness. It is so common, when there is a crime or a suicide, for people to say, “I had no idea. (S)he seemed so normal/happy/healthy/just like everyone else.” Many people with mental illnesses are masters at putting on a “happy” mask in public. Hope is very good at this. It is usually only those closest to her that see her unmasked. To those who know her really well, though, it’s quite visible, even when she’s putting on a pretty good show. It’s heartbreaking to watch her go through so much, just to blend in and keep her vulnerabilities protected. It’s even harder to watch her go through all of that, and then hear people tell us that she looks fine, and that we just need to let her be a teenager. 

The current state of things here is that Hope is in a partial hospitalization program. The program is the same as inpatient, except that she’s home evenings and weekends. Each day, she does school, several group therapies, individual therapy, and is seen by a psychiatrist. We don’t know that this will change anything for her, but her outpatient therapist thought we needed to try something more than outpatient, due to the significant decline we're seeing. We don’t have anything to lose. Basically, what were doing is twofold: 1) She is getting significantly more therapy there than what she has in a week’s time on the outside. 2) She’s being seen by a really good psychiatrist. The therapy may or may not do anything for her. Her willingness to participate varies. This is a good therapist, though, who knows her outpatient therapist personally, and who really gets Hope. Just maybe, with all the time she’ll be spending with her, she’ll get her to open up about some things we think she’s hiding. The psychiatrist is a huge thing, too. He’s one of the best we’ve personally encountered. He has treated her before and is familiar with her case, as this partial hospitalization program is related to an inpatient program where she has been. He trained at a really well-known program, under an adolescent psychosis specialist who we have been trying to get in with. He knows his stuff. He’s also consulting this specialist on Hope’s case to get her opinion on what else we can do with her meds at this point. We don’t know that she will come out of this treatment any better than she was, but we will at least be confident that we’ve tried all of the right things for her.

Basically, all of this is a really long-winded way of saying that things aren’t great here, that we’re not sure how to fix them, but that we’re doing all we can. It’s not good, but it could be worse. It has been worse. It may get worse. We’ll take it as it comes. I'm sorry I don't have better news. It actually makes me really sad to give bad news, because I know that so many people are rooting for our girl. This is real, though. When I decided that I needed to keep a blog and talk openly about life with mental illness, I decided that I would be as real and honest as possible at all times. I don't have nearly as much good news to share as I would like, but that is often the reality for families who have an ill member. Please, go out today and find a way to show love to someone you know who is struggling. It may make all the difference in their ability to make it through the day. 

I'll try to update again soon, especially if there is any change in our circumstances, for better or for worse. Much love to all. <3

And Finally, Some Good News

Rejoice in hope, be patient in tribulation, be constant in prayer.          Romans 12:12 (ESV)

Our life these days never ceases to surprise us. The one thing we know is to always expect the unexpected, and somehow, we're still caught off guard. Every once in a while, though, that's not a bad thing.

Early last week, and after the fourth increase in her antipsychotic, Hope stopped hallucinating. If you're at all familiar with our story, your first question is probably how we know that she's telling the truth this time, right? Well, she went from being her usual, coolly removed self to being a sobbing, emotional wreck. In the past, when she's told us that she's not hearing the voice, she's said it casually. This time, she completely melted down. She (who shows emotion very infrequently these days) cried for three days. She panicked. She said she's not ready for the voice to be gone, and that she doesn't know what to do without it. We were worried that if meds ever did start to work for her, we wouldn't know how to believe that she's telling the truth, but boy, was it clear! It has now been 9 days since her last auditory hallucination, and 8 days since her last visual hallucination. She also reports that she no longer feels homicidal.

I can't even believe that I am writing these words, after such a long battle to get to this point, but our girl appears to be psychosis free for the first time in almost two years. I still can't quite grasp that. (Side note: When I say psychosis-free, I guess I really mean hallucination free. Delusions are also psychosis, and we don't actually know where she is right now, as far as grasp on reality, or whether or not she holds appropriate beliefs about the world in general. It hasn't been the primary focus of our efforts, as it simply isn't the most important right now.)

Once this change happened, we had to start reevaluating what that means for her current placement. Residential treatment was recommended because her providers believed that outpatient wasn't a high enough level of care with the symptoms she had. With a change in those symptoms, we had to rethink that. Residential is essential in some cases, but should be used with caution. The kids there have severe behavioral concerns. Many have histories of violence, sexual acting out, drug and/or alcohol use, etc. When you're looking at placement of a kid like Hope, who doesn't have any of the above, you really have to carefully weigh the positives against the potential harm. We had arrived at the point where pretty much all of the providers in her world believed that it was necessary. However, if she is, in fact, hallucination free, is it still necessary? After talking it out with her team at the hospital, and her outpatient team, we determined that she didn't need to be thrown into that situation at this point. We would risk her being either traumatized or hardened by it, neither of which are good for her. We would've done it as a last resort, if she were too dangerous to be anywhere else, but she really does seem to be responding to this med, and therefore not too dangerous to be at home. 

On Sunday, the day before her 14th birthday, we brought our Hope home. She was only away for two weeks, which we've been through before, but this time seemed so much longer. It wasn't just a two week hospitalization; it has been a two month process. She was inpatient for two weeks, then at home but with us working hard on figuring out residential placement for a month, then inpatient again for another two weeks. It has been two months since we were able to just be, and since we were last able to picture our summer happening as a family of four. 

Not to negate all of the happiness above, but life is not all butterflies and sunshine. Our child still has a very serious illness. We rejoice that at least in this moment, she is med stable, but what exactly does that mean? Antipsychotics control psychosis, which is just one component of schizophrenia. There are many other challenges and deficits that remain. Even if Hope does continue to show response to meds, we are faced with at least some of the following symptoms of schizophrenia: executive functioning deficits; deficits in working memory, and organizing thoughts; impaired motor skills; emotional flatness or lack of expressiveness; an inability to start or follow through with activities; speech that is brief and lacks content; a lack of pleasure or interest in life; difficulties with social cues and relationships; neglect of self care... the list goes on and on, and the ones I listed are just the ones we've already encountered in Hope. 

Honestly, even our best-case-scenario for Hope means that life will never be easy. We want to aim high, and help her achieve all that she can, but we know that our goals for her will be different than what we dreamed of before she was sick. All of our goals now are for her to achieve the most normal life she can, knowing that it still won't be "normal." Most individuals with schizophrenia require some form of daily support. It's not realistic to believe that she'll be able to completely manage her own life, but we can do our best to give her all the skills and support she will need to eventually live independently -- with support to manage things, but maybe at least in her own place. Less than 15% of people with schizophrenia are employed. We can give her all of the resources and training necessary to support her working at least part time, though. We know that working provides a person with a sense of worth, connects him or her to the community, and provides life with a sense of purpose. Some of the things that we (her family and her therapist) will work very hard on are: teaching life and self-care skills, so that she has the best chance of some level of independence; educating about the need for medication compliance, so that we lessen the risk of noncompliance in the future, which is one of our biggest long-term worries; teaching social skills, providing ample opportunities to practice these skills, and realistically, forcing interaction, because she pretty much always chooses not to interact when she has an option; educating about the pitfalls of drug and/or alcohol abuse, which is obviously always a bad thing, but is especially common in those with mental illness; watching for signs of increased suicide risk, as different studies show that 20 - 40% of people with schizophrenia attempt suicide, and around 10% succeed (this is especially scary for us, as Hope has already attempted once.) Life will never be easy for Hope, and this means that life will never be easy for us. Sometimes, I'm exhausted by that thought. Then I remind myself that if the only options are working hard every day to support her, or living life without her, it's really a very easy choice. 

As far as where we are at this moment, I suppose we're just trying to get our bearings. This is the first time we've seen Hope hallucination-free in almost two years. She hasn't just gone back to how she was two years ago, though, because her illness is still so all-encompassing. We don't know how long she'll be stable, what will happen when the psychosis inevitably returns (will she be honest and let us know right away? will another quick tweak get it back under control? could she become very dangerous before we have any idea that it's happening?), and how we handle it when it does. We're trying to put together treatment plans for many other things that we just couldn't focus on when her psychosis was the top priority for so long. We're adjusting to having her back at home, which is what we wanted, but at the same time, is not always easy.

At this moment in time, we have a child who is very, very depressed. She is grieving the loss of the voice that was her companion for a long time. While we understand that this voice was a result of a brain malfunction, she experienced it as a separate person, and was really the most important person in her life. Now that it's gone, Hope doesn't know what to do with herself. Her grief has turned from frequent crying to a deep, quiet depression. We understand that she must go through the same grief process that accompanies any loss. Meanwhile, we're watching very carefully for med compliance (she has stated that she knows she could fix it if she'd just stop taking the meds, and she has been noncompliant in the past by both checking meds and by purging after taking them) and watching for any signs that she may harm herself (again, she's tried it in the past, and she is incredibly depressed and hopeless at the moment.) She moves very little, speaks very little, and when pushed to do either, she's not very pleasant. She's not engaging much right now, but occasionally something will distract her enough to get her briefly out of her shell. We're thankful for those times, and hope that they will become more and more frequent as she works through her grief. 

We would appreciate prayers for: continued stability and further healing; our sweet boy, who is still struggling with his anxiety; our stamina, as this race seems endless, and sometimes we are so tired; financial provision, as this has been such an expensive year already; a peaceful home, as life with Hope can be stressful sometimes, and we didn't expect her home so soon, and while we're happy for that, it is an unexpected adjustment for her parents and sibling. Most of all, we want to thank you all for your faithful thoughts and prayers. While there is a long road ahead, and our days are still hard, we know that what we've just experienced is a huge, huge deal, and there just aren't enough words to thank all of you who are with us on this ride. Much love to you all!

Hoping for Daylight

"Even the darkest night will end and the sun will rise."          Victor Hugo, Les Miserables

I'm sorry I didn't get back sooner to tell you all how things went last week. I know that while many of you get information other ways, there are some for whom this blog is the main source of information about our family, and I try to keep up for that reason.

Last Monday, Hope was admitted into a facility a few hours from home that has both acute and residential treatment programs. As I said in my last post, she is not stable enough to be admitted directly to a residential program, but we knew that she'd meet criteria for immediate admission into the acute facility. I'll explain what the team in the acute unit is currently doing for her, and then we'll talk about what happens next. (Spoiler alert: We don't actually know at this point.)

Right now, Hope is in a secure, acute facility. That's the highest level of psychiatric hospitalization, and is reserved for individuals who are currently too unstable to be anywhere else. Because of her active psychosis, and daily homicidal ideation, Hope always meets criteria to be at this level. Several people have asked why -- if she is like this all the time -- hospitalization is so pressing now, and is being pursued harder than in the past, when we've sometimes gone months between hospitalizations. The answer is that we thought she was more stable then. We've only known since early April that none of the meds have worked at all, and that she was being dishonest about that. Since we discovered just how on-the-edge she's really living, there has been huge pressure to either find a way to stabilize her, or keep her somewhere more secure for now. Her outpatient providers just don't feel like outpatient is enough for her right now.

The good news is that the doctor who is currently treating her is doing what neither the doctor in the last hospital nor her outpatient psychiatrist would do. He is increasing her Clozapine. If you've been with us long enough to know about this med, you know that it's our best chance. If multiple other antipsychotics fail to help, the best thing you can do is try this med; a percentage of people who have not responded to anything else will respond to this. We started Clozapine seven months ago, have increased several times, and it has not affected Hope's psychosis so far. When two doctors told us that they personally wouldn't go any higher, we were crushed. Of course we don't want to just throw high doses of intense meds at our child! But what else are we to do? We know that if this doesn't work, the chances that anything else will are incredibly low. (This is because the meds in this class are all similar enough that if multiple ones have failed, there is very, very little chance that any of the others would work.) Clozapine is the best option, period. We also know that the official info on this med says that we can go a fair amount higher, so we're not asking for anything outrageous or unsafe. The hesitation by some doctors is her age. However, she is not yet at the max adolescent dose, so we're not trying to get them to do anything that isn't supported by the official info on this med. All we wanted was for someone to be willing to push on up toward the higher end of the range and see if she might respond. Is there a chance that she's in the 10 - 20% of people who don't respond to any meds, or respond only minimally? Yes. That's not only possible, but looking increasingly likely. Are we willing to say that at this point? Absolutely not! Meds are the one and only way to control psychosis. You can't talk someone out of a psychotic state any more than you could talk them out of diabetes; their bodies are malfunctioning in a way that only medication can help. Meds won't necessarily affect symptoms other than psychosis, and most people with schizophrenia are still quite impaired even if they're psychosis free, but controlling psychosis would give our girl a much better quality of life, and would greatly reduce her need for hospitalization. If we hit the point where we can't go any higher on her Clozapine, we'll essentially be giving up on meds. We won't say that, of course. We'll try everything on the market, on the crazy chance that against all odds, one of them happens to work for her. But we know that this is our best hope. That's why it has been such a big deal, and why we're so thankful that the doctor who is currently treating her has been willing to increase it. The bad news in all of this is that we've already done two increases, and she's still showing no effect. The good news is that we're still trying, and still hopeful. 

We don't know how long Hope will be in this acute unit. We're doing all we can to stabilize her. Despite the fact that we've never actually managed that before, it is of course the point of acute hospitalization. We hope that we'll hit the point where the med she's taking is at the right dose for her, and her psychosis breaks for the first time in almost two years. (Now, the fact that she's lied about it before makes it tricky, and I don't know how we'll decide whether or not to believe her if she says it's working. We'll cross that bridge when we get there, though, because right now she's being honest with us about the fact that it's not working.) It is also possible that we won't reach that point, and that we eventually get to where the doctors have tried everything they know to do with her meds, and they simply can't keep her forever. Where do we go from there?

Whether or not Hope has achieved more stability, she'll need to move on from the acute unit within at least the next couple of weeks. The average length of stay there is six to fifteen days, and she's already been there for six. I don't know what will happen, but there are basically three options for where a person could go after discharge:
- Home. This would be an option if she's stable enough to be safe at home with just outpatient treatment. Conversely, we could end up bringing her home even if she's still unstable, but acute can't justify having her there any longer, and a residential program won't accept her. It's so messed up that a person could be denied admission to a residential program because they're too sick, but end up at home by default, which is even lower security. 
- Residential treatment. If she has responded to meds, this type of program could help her learn to live as normally as possible with her remaining symptoms. Even if meds work, they'll only knock out the psychosis, and a person still needs to learn how to function as well as they can with a slew of other difficulties. The highly structured nature and frequent therapy of a residential program could be beneficial. Even if meds don't work, her therapist believes that residential treatment would still be beneficial. However, it would depend on the program's willingness to take her despite her ongoing symptoms, and whether or not they think they could do anything to help her.
- State hospital. This is the one thing we almost never discuss, and we would not go into it quietly. I'm throwing it out here as one of the things that could, in theory, happen to a person upon discharge from an acute facility, but I'm not ready to talk about it for us personally. I have mentioned here, on occasion, that the type of place that could serve a very ill person are the so-called "institutions" that barely exist anymore. Several mental health professionals who have treated Hope have brought up this option, at least in a "have you ever thought about this?" way. Basically, state hospitals are longer term but still high security, which is (in theory) how you bridge that tricky gap between "acute isn't long enough" and "residential isn't secure enough." Just this week, Hope's current hospital therapist asked if we'd ever talked about that option. The answer is that we are not looking at that option. State hospitals serve a purpose. I'm glad that there are still some in operation. Some people are either too dangerous to be in the community without risking harm to the general public, or too vulnerable to be in the community without being easy targets to be victimized in any number of ways. These places are not the horrible asylums that we think of when we hear state hospital, and they're not places where you just park someone for life and drive away. (They are never to be considered someone's residence, and they are always supposed to be actively working toward moving the person into the least restrictive setting.) Anyway, back to our specific situation. Hope is a minor who has parents who supervise her at all times. We believe this makes her neither dangerous enough to need to be kept out of the community or vulnerable enough to need to be sheltered from the community. 

The short version, not that I ever manage the short version of anything, is that we don't know what happens next. We know that we want Hope to be at home with us. We know that professionals whose opinions we value and trust have told us that she needs something more than that right now. We know that we are willing to do anything if we have good reason to believe that it will change her life for the better in the long run. As is so often the case in our lives, right now we can only take one small step at a time, and see how things play out.

I like to try to give specific prayer requests, and suggestions for how to help us. I hope you all understand that I'm not asking for or expecting anything from anyone. I like to include this information for those who ask, and also because I think it could potentially be helpful to apply to other situations, should you happen to know anyone else whose family shares any of our struggles. 

Prayer requests:
- Peace and comfort for all of us.
- Guidance - That we would know what decisions to make, and that her treatment team would know how to best help her.
- Healing. Whether it be through med response or the healing that we do believe is possible, please pray for Hope to be healed.
- Patience, as we struggle with being apart, with not knowing what's going to happen, with our interactions with each other.
- Please continue to pray for our baby boy, as his anxiety continues to be at a high level. We try to keep things as calm and normal as possible for him, but he's ten years old, and he fully knows and understands everything that's happening in our life. That has to be difficult, and during some periods of time, he has struggled with anxiety. Please pray for his peace.

How you can help:
- Local folks: Help me keep my sweet boy busy while his sister is away. He used to occasionally comment that he felt bad for a friend of his who is an only child. That sounded like the loneliest thing to him. Since Hope became sick, things have changed a lot, and they don't interact as much as they used to. He still loves her like crazy, though, and I know it's hard when she's away. All of our regular school-year activities have stopped for the summer, our days are less full (at least with fun stuff) and I don't want him to feel sad or lonely. If you have kids who are friends with mine, help me keep play dates and such on his calendar. Just also try to keep in mind that I'm pretty busy sometimes, too, and that I'm not trying to avoid you if it takes a few tries to figure out a time we can get together.
- Tell me what's going on with you. I love that people ask about Hope, but I also want to hear about you! I don't want to talk all the time. I don't want to feel like my conversations and friendships are one-sided. I'm uncomfortable with feeling like I'm taking more than I'm giving in any situation. Tell me what's up with you -- the good things, the bad things, the mundane things. Please don't think that just because there's big stuff in my life that I don't care about yours!
- Send cards. Our girl's 14th birthday is in eight days. We can't say for sure (goodness knows our life is nothing if not unpredictable!) but there's a good chance she won't be home. There are very few things she's allowed to have in the hospital, but she can have cards, letters, and pictures. I thought it would be really cool to be able to shower her with cards for her birthday, since there is so little else I can do. This is a time-sensitive request, though. They probably need to be in the mail within the next couple of days, since her birthday is Monday, and we'd need to have them by Saturday. You don't have to say anything profound (in fact, she appreciates humor more than mushiness anyway), just the gesture would be appreciated. If you're interested in sending a birthday card, message one of us for our address.

I guess that's it for now. I'll try to be back again soon. Hopefully, we'll have things more settled in the near future, and know where we're headed from here. I hope you're all well, and enjoying the start of summer!

Curveballs

"This is my family. I found it, all on my own. It's little, and broken, but still good. Yeah, still good."          Lilo & Stitch


Well, as I said in my last post, our life moves very fast sometimes. Our family definitely has more than our fair share of chaos, but we ride it out together, and we're thankful for those of you who are willingly along for the ride.

We finally got word that all paperwork had been received, and that they were ready to schedule Hope's admission. I packed up all of the personal effects on the provided list, gathered all of the various documents and things we would need at admission, lined up dog sitters, and booked a hotel for a couple of nights so we wouldn't have to drive there or back on admission day. On Thursday, we made the five hour drive, checked into the hotel, let her choose a restaurant for dinner, spent some time in the hotel pool, and tried to come to terms with the fact that we were just hours from starting our longest (both time and distance) separation ever. On Friday morning, full of nerves and dread, we went to the facility.

On arrival, we met with the admissions director, and she explained the process. First, she said, Hope would need to be evaluated by a psychiatrist. As I mentioned in my last post, they can't ask our insurance company for approval until they've conducted their own evaluation, because they have to present that assessment to them. We spent over an hour in what should've been a fairly brief psych evaluation, and knew almost immediately that it wasn't going well. The doctor pretty much told us so, but took it to her boss for discussion anyway. Apparently, he agreed.

In the end, we were told that they couldn't admit her. The person who received all of our records, accepted her, and scheduled her admission was the admissions director. She knew that Hope met multiple points of their exclusionary criteria, but still thought they could help her. A psychiatrist had never reviewed her files, and wouldn't have let us get as far as we did. They told us the same thing everyone tells us; she needs treatment, but they can't help her there. They said she was very close to the point where they would've had to call someone to transport her to an emergency facility, but they didn't want to do that with us so far from home, and accepted our promises that we would do that if we thought we needed to. Because we have done that on eight different occasions, they trusted that we would, and that we could determine where that line is. The psychiatrist told us that we should continue to pursue getting her into some type of long-term treatment, but admitted that she didn't know of any programs that would be both long term and secure enough. (As I said in my last update, acute programs are secure, but short term. Residential programs are long term but less secure.) We discussed the fact that "institutional" hospitals barely exist anymore. She said that she doesn't actually know of any, but that there have to still be some somewhere, and that we should keep looking for something like that. *sigh* Thanks for the help, doc.

As far as their program, they gave us several reasons they couldn't accept her:
- They couldn't risk the safety of their other kids by having her there. They have plenty of kids who act out aggressively and have a history of fighting, but that's different than a person who looks you in the eye and calmly states that she's entertained homicidal thoughts as recently as that very day (every day, in fact), and that the reason she wants to kill someone is just because it sounds like fun. In a place with extremely high security, you know that someone couldn't really hurt someone else even if they tried, but that brings us to the next point...
-  Their facility is not secure enough for someone like her. They think she needs to be somewhere that's "hardware secure," and while these kids are supervised, the program is very outdoorsy, and therefore not secure enough. They live in cabins that are more like home or summer camp than a psych facility. The doctor mentioned that kids at this facility could potentially get their hands on things that you can't in a locked hospital ward, like kitchen tools or utensils, scissors, or things like rocks and sticks. 
- Even if security wasn't an issue, they didn't think they could help her. They said while their program does treat mental illness, they mostly have kids with behavioral problems and/or milder illnesses. (Because, well, pretty much all illnesses you see in young people are milder than hers.) They give kids some counseling, some meds if necessary, some structure and responsibility, and help them learn respect, better coping skills, help them heal from trauma or fractured families, help them work through negative self-images, etc. You know, things that troubled teenagers might face. They are not prepared to handle someone who is, in their words, as "chronically mentally ill" as our child is. She is a whole different level of patient, and they couldn't see how they might be able to do anything that would affect her life in the few months they might have her. This is the problem we've found everywhere she's ever been treated. They are used to dealing with adolescent problems, and that's not what she has. The people who would know what to do with schizophrenia, especially med-resistant schizophrenia with especially persistent psychosis, work in adult hospitals. She is years from being able to be treated in that type of setting.

It was an incredibly frustrating experience. We did everything right. We were totally up front about her illness, so they'd know exactly what they were getting, and could determine ahead of time whether or not they might be able to help her. We sent a huge file full of things like intake and discharge summaries from all of her hospitalizations and letters from her therapist and psychiatrist. Right there, in black and white, was as clear a picture as we could paint for them. Yet somehow, they still seemed surprised by the severity of her illness. Honestly, it was a huge blunder on their part. The admissions director was apologetic, and I was sad for her, because she looked like she felt awful. She took full responsibility for making us get to that point, only to be turned away. I think she really wanted to be able to help this child that no one else can/will help, and I guess she really thought that they could. I wasn't angry at anyone, but I felt pretty crushed to have been turned away.

In the end, this was a resource-sucking dead end. We spent time on this lead. The process took weeks, during which we stopped looking for other options, because they had already accepted her, and we were just trying to get through the long process. I gave so much time to phone calls, emails, faxes, forms, gathering everything they needed, driving to facilities to sign release forms, because it would be faster than waiting for mail and they wouldn't accept fax. We also spent two days away from home, including ten hours of drive time. We spent money on this lead. I purchased things she ended up not needing, because the nature of their program meant that their packing list was very specific. We spent on gas for a road trip, two nights at a hotel, and two days of meals out. We spent on getting them everything they wanted in order to consider her. (For example, we had to pay for things like non-insurance-billable phone calls with her providers, letters that took them time to write, fees for copying records because that was the fastest way for us to get them.) We spent emotional energy on this lead. That resource is just so scarce right now.

I guess I've gone on long enough about the failed hospitalization, though. The burning question is "what happens now?" We drove away from that hospital without a clue. We'd been told that she needed residential treatment, but this place was literally the only residential facility we'd been able to find that would even consider her. Do we keep looking, and if so, where? Do we consider going back into acute hospitalization, and if so, what is that going to accomplish? The admissions director at the failed hospital, along with the gentleman who works for their parent company and had put us in touch with them in the first place, said they'd try to help us find other options. This man's advice, now that we'd been turned away from our only residential hope, was to look specifically at facilities that had both acute and residential programs. An acute hospitalization isn't enough to do anything, and residential programs are all going to tell us that she has to be stabilized before they'll take her. But what about getting her into a place where the acute folks could try to stabilize her, and even if they couldn't, they'd be familiar enough with her case to vouch for her with the residential side of their own facility? Rather than just discharging her with a recommendation for residential treatment, maybe they could help get her into residential. The man I referenced above sent her file to another hospital that's owned by the same company that just rejected us, and this hospital has both types of treatment on the same campus, which we think increases our chances of success. However, it's about 1,150 miles from here, which means either 18 hours by car, or burdensome airfare and car rental. Even if they accept us, which they haven't, that's not a great option. If they were specialists there who actually had significant experience with childhood schizophrenia, we'd do it in a heartbeat. It doesn't appear that they'd be any better at it than any other random psych hospital, though. This hospital was really only recommended because it happens to be owned by the same company, and that's not enough reason for us to pursue something that far away.

What now then? I spoke to Hope's therapist on Friday, and we discussed the idea of looking at facilities with both types of treatment programs. She agreed that that would be our best bet right now. Hope meets all criteria for hospitalization. (She always does, actually. We keep her at home as much as we can, but at any moment, we could take her to any hospital, and they'd keep her.) Any acute facility should be easily willing to admit her, we just haven't wanted to do that again yet. However, if we're looking for a place that could admit her into an acute unit, and then perhaps move her toward a residential program in the same hospital, it's worth doing. At this point, we have no other prospects for getting her into residential treatment. On Friday afternoon, immediately following our rejection from the other program and a quick phone call with her therapist, I called the place that the therapist and I agreed should be our next move. They have licensed clinicians who take calls and help families decide whether treatment there would be appropriate. I spoke to a very nice woman, told her exactly what our situation was, what had been recommended, and about the situation we had just been through. She said that, given Hope's current situation, she would probably not be a good candidate for their residential program, but certainly would be for acute treatment. I was open about the fact that I called them specifically because I hoped that they could bridge the two better than just taking her to any random acute facility, and asked if she thought that was a possibility, and she agreed that it sounded like a good move for us. Does that mean that any of it will work like we hope? Absolutely not. It only means that one person in that hospital understands our situation and thinks they might be able to help us. What else is there to do at this point, though?

Tomorrow, Hope and I will head to this new hospital for a scheduled evaluation. We have packed everything she would need if she were to be admitted, because there is a very good chance that she will be. If they keep her, she'll be a little under three hours from us. We won't be able to visit her daily, like we've done when she's been in hospitals close to home. We won't stay in a hotel near her, like we've done when she's been in an acute hospital a few hours away. Our finances have simply taken too much of a beating to allow that. We have been mentally preparing for a residential stay, though. We knew we would only be allowed to visit so often, and that the distance between us would only allow us to visit so often. Even though this will be an acute stay, we'll just have to treat it the same.  Once she transitions to residential, if she is able to transition to residential, we'll figure out how that all looks. 

It's a difficult situation, and I'm really sad about it this time. I'm never happy about it, of course, but this feels really stressful. Maybe it's just the quick change in plans. There will only be three days between the expected admission to one hospital, and the likely admission to a different one. This plan feels a lot less settled than that one, because it's not the last stop -- it's designed to be a shorter stay, and we'll be working to manage this step while figuring out the next step. I had processed her being in a residential facility, and come to some kind of peace with not being able to see her as often, because I knew that she'd be doing outdoorsy things and would be generally happier than if she were locked up somewhere. Now we're looking at her being in a locked facility, in an acute program that would allow daily visits, and we (the parents who are always, always there, looking around at the kids without visitors and wondering how a parent could just not be there) will only be doing phone calls, because our year has just been too expensive to be able to pick up and stay near her this time. I feel guilty that she'll be in a different setting than she'd expected, and I feel guilty that I won't be there as much as I'd want. I feel unsettled in the fact that I know less about this hospital. We researched it some, before we found the other one, but didn't spend as much time on it. I've already asked about a tour, and they said they'd be happy to let me tour the facility. Still, I just feel so much more conflicted about this move than the one we thought we were making. I know I can't always make decisions on how I feel, though. I'm never going to feel good about putting my child in a psychiatric facility. I hope that seeing the facility tomorrow will help me feel a little better, but I have a feeling that if she's admitted, I'll be a wreck when I have to drive home and leave her there. 

I wish this update was more settled, or more coherent. I feel like I'm probably rambling, and saying way too many words but still not making sense. I really wanted to post an update today, because I know that people love our girl, and want to know what's going on with her. I feel so scattered and broken, though, and simultaneously empty and full-to-bursting with too many emotions. Forgive me for the mess of a post. 

I will do my best to update again very soon, and hopefully be able to give you all a better idea of what this round of treatment will look like. If you're a praying person, we would appreciate prayers as we navigate all of this. <3