Home Again

"Lights will guide you home, and ignite your bones, and I will try to fix you"          Fix You, Coldplay

Hope is home. Those are beautiful words, despite the fact that it's not all roses and sunshine over here. Keeping her at home is one of our very highest priorities, and the fact that we've once again gotten her back home is great news. 

My last post explained that we were concerned about whether or not we'd be able to increase Hope's med, because her levels had previously been so high. The first thing they did was check that level, and we were surprised and pleased to see that her numbers had fallen quite a bit. That offers a possible explanation for why we were seeing what we were. Her dose hadn't changed, but her body is metabolizing it differently so the actual serum levels in her blood dropped. We did some increases, and it seems that she has responded well. She is not completely symptom free. Since the onset of her illness, she has never been symptom free, and likely never will be. However, she does appear to be free of the dangerous symptoms.

I wish I could say things are just as easy as tweaking meds and going right back to our regular lives. Unfortunately, it is usually much messier than that. We do believe Hope to be much more stable than she was. There is always fear that she's hiding symptoms, though, because she has a long history of doing so. Even if she's being honest, there are additional fears and concerns. This time, she let herself get incredibly out of control before telling us that we needed to get her immediate help. She put everyone, including herself, at risk by not telling us until it got that bad. What happens when the symptoms push back in? They will. We saw how quickly her serum levels fell this time, and know that it's just a matter of time before it stops working again. If we could see symptoms and get her back to the hospital for another adjustment at the first sign, we'd feel more comfortable. Unfortunately, we only know what she tells us, and she has shown over and over that she will hide things from us. She got to the point where she genuinely believed that she would snap, and she was cutting herself from the pain, and she was planning to kill herself to resolve the situation. How long do we have before she's back to that place again, and do we have any reason to believe she'll tell us before she gets to that point? She says now that she will tell sooner next time, but when the voice comes back, history shows that its influence has tremendous weight. 

Honestly, we're scared. It isn't the first time we've brought her home feeling scared to do so. It probably won't be the last. But it doesn't get easier. We're scared, because as recently as a week ago, she was as suicidal as she's ever been. (Barring, of course, the time she actually attempted suicide.) A week ago, she wanted to kill herself, and now we're supposed to feel confident that she won't try? We're afraid, because if she were still suicidal, she could easily just say the meds are working so that she can get out of the hospital. We're afraid, because each time she lives through severe emotional pain, she has that much more reason to never want to feel that way again. (Statistics show that there is an increased suicide risk when a person has recently become stable, or in other words, newly in an "up" time. The misery of the low time is still fresh in the memory, and the person may decide that (s)he never wants to go through that again, and to take charge and "fix it" while (s)he is of sound mind to do so.) We're scared, because it's harder to prevent self harm than any other type of acting out. We thought our home was pretty safe before, but she broke a pencil sharpener to get the blade out of it and cut her wrist. So, now pencil sharpeners can be added to the list of things we keep in the locked closet. But that won't stop her from finding something else if she wants to badly enough. Honestly, it's scary to be responsible for keeping a person alive, when you know that at any point they may not want to be. She can sometimes verbalize why that's not the right answer, but she's not always herself. The concern is that she makes poor decisions when her brain is so clouded by other things that she can't think rationally.

Here's a confession. I don't wake her up in the morning. For two and a half years now, that task has fallen to my brave husband. He goes up in the morning, shuts off the alarm on her door, and opens it. I am afraid that one day, we will open the door and find that she has taken her life. I can't bear the thought of finding her like that, and while he presumably shares the same feeling, he performs that task every morning to save me from having to. This is our life.

Another factor here is that Hope is not our only child. (Since I don't write about him often, I'll remind you that the pseudonym I use for the little guy on this blog is Isaac.) Isaac is eleven years old, loves his sister, and also fears her. He's been dealing with all of this since she got sick when he was eight, and has known since then just how scary her symptoms can be. We would've preferred to talk in more generic terms, but she chose to tell him exactly what she was thinking, experiencing, and planning. Despite threats, plans, and voices telling her to do so, she has never actually been violent. We don't expect that she will just snap and attack someone out of anger. However, when she's most symptomatic (and we can't always tell when that is), she does sometimes feel a desire to hurt someone. It would be negligent to not be on guard. As I said above, we know what to expect from her when she's rational, but she's not always rational. We take precautions to keep him protected from her without drawing attention to it in a way that would reinforce his fear. We don't leave them home alone as you might expect of kids this age, we don't let them take walks alone together, we make sure she's in her room with her door alarmed before he goes to bed so that he's never that level of vulnerable. And while we don't believe that he's in serious danger, it's stressful that we have to think about it. It's even worse that he thinks about it. He doesn't go around constantly worried about being attacked at any moment, but he is afraid of her. If they argue, he'll sometimes stick himself to my side for a while and tell me that he just feels safer being where I am until she cools down. Sometimes, if she has had an especially rough day or if she goes to bed mad, he'll choose a sleepover in mom and dad's room out of fear that she could get to him before we could get to her. (We keep an extra twin size mattress in our room, and he's welcome to have a sleepover anytime.) I am not constantly worried for Isaac's safety; if I was, we simply wouldn't be able to have them live together. However, I do think about it, and more importantly, he thinks about it. I hate that he lives a life where he's sometimes afraid in his own home. Hope's illness has brought so much difficulty to his life, and it breaks my heart that he's ever afraid at home. 

Here's another confession. Bringing Hope home is not a matter of simple celebration. When we got the call that they were planning to discharge, Isaac was quiet. I asked how he felt about that, and he said he was conflicted. "I miss her when she's not home, but I don't feel as safe when she is." This is our life. 

For the sake of her safety and everyone's peace of mind, we talked about whether or not to consider residential treatment for a while. It wouldn't be permanent out of home placement, but it would give us more time to see if we believe that she's being honest about symptoms (and is therefore not too dangerous.) It would give us more time to see if she appears to be stable and rational, rather than having to just bring her here so soon after she was so suicidal, and hope she's not anymore. It's a horrible discussion. Do we pursue treatment that she would hate, would potentially expose her to all kinds of behavioral problems she hasn't seen before, and would force a separation that might damage our relationship with her and generally traumatize everyone? Or do we bring her home, worried that she could try to hurt someone, terrified that she'll try to kill herself and we'll have to live with knowing that we could've done something else to keep her safer, and -- best case scenario, even if everyone stays physically safe -- knowingly exposing everyone (including our precious son) to a constant stress that just eats away at you over time? 

Ultimately, we made the same decision we've made before. If there isn't clear, present danger, and a clear reason that she can't be at home, she should be at home. If she's never actually tried to hurt us, she probably won't. If she told us the last time she wanted to kill herself, we have reason to hope she'd tell again if she were feeling that way. Yes, there is stress. But there are no stress-free options in our life. Things are hard, things are stressful, things are exhausting, but those things exist in any of our options. Unless we have reason to believe that Isaac is in danger, or being seriously damaged by the situation, we have to keep her at home. On a side note, about Isaac being harmed by the situation... We have discussed other options. We have talked about whether or not we could serve everyone better by moving into two small homes or apartments. Hope would live in one, and Isaac in the other, and hubby and I would trade back and forth between the two, with one parent with each child at all times, but the whole family only spending time together sometimes. (If you've ever seen the special "Born Schizophrenic: January's Story," you'll recognize that as the arrangement they used to keep their other child safe.) We decided that at least the way things are now, he is not so upset by things that it would be an improvement. He'd be so sad that we weren't all living together that it would cause more stress than it would relieve. Unless things get worse, or we feel like she is actually a real threat to him, we're still best off all together. And so... at least right now... she's relatively stable, and she's home.

I'll quickly touch on how Hope is actually doing, symptomatically. She says she's not hearing the voice, not feeling homicidal, and not feeling suicidal. She always has some auditory and visual hallucinations, even at her best, but she says those have decreased from where they were. It makes sense that they would, knowing that her clozaril level had dropped, and is now higher again. Those things are not going to go away, though. In the couple of days since she's been home, she's had just two things that were really strange. One day, she said that everything around her looked somehow surreal, like she was watching it on TV. She couldn't explain how things looked "off," just that they definitely were. The next day, she freaked out because there was a lump in her neck that wasn't there before. It was her Adam's apple. I explained exactly what it is, that it's larger in males but present in everyone, and assured her that it has always been there. She insisted that it absolutely has not, or else she would've noticed. She panicked, and I couldn't get her to calm down, stop crying, stop grabbing at her neck. I finally had to drive her to my brother's house (luckily, I have a nearby family member who is a doctor) so he could examine her and tell her that it's exactly what I was telling her. She has never done anything like that before. I couldn't tell if she was worried it was a growth of some type, if she was paranoid that it was a device or something, or who knows what. It was weird, and definitely not pleasant, but neither the surreal appearance of her surroundings or the freak out over her Adam's apple are the type of things that would lead to hospitalization. These are just the things that comprise our daily life. Otherwise, she's mostly quiet and withdrawn, with periods of agitation, and periods of relative normalcy. The quiet and withdrawn piece of that could be in part due to a large med increase, as this med does have a strong sedating effect. Only time will tell how she actually seems to be doing after this big bump.

I love every one of you who has followed along with our story. I know that our life is messy, and that it takes a lot to come into it and choose to stay. I do understand why some people have pretty much disappeared. I am thankful for those who have stayed through the changes. And I am unspeakably grateful to those who came into our lives when they were already crazy, and chose to stay anyway. So many of you mean so much to me. I love that a special group of kids made a big picture with drawings and words of encouragement that I was able to take to her in the hospital. I love that the idea to do so came from one of Isaac's friends, which is sweetness you might not expect from a boy that age. On that subject, I love that Isaac has the very best friends in the world. I love the friend of mine who always asks how I am, and if I try to give an answer about Hope, she'll tell me that she'll get to that in a minute, but that she asked about me. I love the friend who I don't even know all that well yet, but who cried when she listened to me talk about the decision we were trying to make about bringing Hope home or considering residential treatment. I love the friends who always text to find out how things are going, because I can be really bad at getting outside my own head and reaching out to others. I love the friends who remember to talk to me about themselves and what's going on with their lives, because sometimes I just get so tired of talking about my stuff, and I just want to be a regular person. I love Hope's youth leaders, who are so good to her, and are such good influences on her. I love the friend who started as a leader from one of the kids' activities, and became one of the most beloved people in my kids lives, and one of the few non-family people in the world Hope genuinely trusts and loves. I love the sweet girls who include Hope in activities and seem dedicated to being her friends even during the times when she doesn't reciprocate very well. I am thankful for people I know well, and people I barely know, who have reached out just to say that they're thinking of us or praying for us. I am thankful beyond words for so many of you, for so many reasons. Please know that not a single act of kindness has gone unnoticed or unappreciated, and please know that we are as much here for any one of you as you have been for us. 

Dark Times

"...at times she was strange and dangerous. But mostly she was sweet and scared and harmless."          Harry Potter and the Deathly Hallows, J.K. Rowling

Let's all agree to skip the part where I admit I'm a bad blogger, and apologize for the time it's been since my last update. I am a bad blogger. And it has been a long time. But I'm here now, and so are you, so let's get started.

Hope is in the hospital again. That's where we are right now. If you'll give me a bit of your time, I'll back up and go through where we've been in recent months, and how we got here.

When I last updated, it was November. We were concerned that Hope was starting to slide back toward being more symptomatic and less stable. That did happen, but she didn't dip as low as we had feared. She didn't go completely flat, she remained at least somewhat functional, and there was nothing serious enough to warrant a hospitalization.

The time since then has been pretty good. She has been the most stable since the onset of her illness. She has continued to have auditory and visual hallucinations pretty much daily, but they've been mostly mild and fleeting, and she's able to live with them. There has been an increased difficulty discerning the difference between what's real and what's not. This also happens almost daily, and sometimes multiple times a day. She'll distinctly remember things happening that never happened, or have no recollection of things that did happen, but it's been in ways that are minor enough that she could live with it. I mean, she wouldn't be able to take care of herself, but she's been stable enough to be safely at home with us. She has also developed some odd fears of things that she wasn't previously afraid of. Again, though, that's manageable. Overall, things really have been good. Not easy... not what anyone else might consider "normal..." but quite good for Hope. Socially, and in public, she's been doing so well that friends just go on and on about how great it is to see her looking this way. 

We're always waiting for the other shoe to drop. It always will. Her illness is far too severe to just coast along forever. And while we always know it can happen at any time, it still catches us off guard sometimes. After ten months out of the hospital (her longest stretch, by far!), we are suddenly right back in the chaos and fear that is often our reality.

We just found out last night that the voice has been back for a few weeks. Random, isolated hallucinations don't threaten anyone's safety, but the one she calls "the voice" is a very different story. If you're not familiar with this symptom, you're welcome to back up and read older entries. (Short version: It's an auditory hallucination that she sort of sees as a separate entity. It gives homicidal commands. Most of her hospitalizations have been because of this voice, which tells her to kill.) She had a hard time bringing herself to tell us it was back, so she's been dealing with it for a couple of weeks on her own. She reached the point where she no longer felt in control or safe, though. From there, the only option was to go to the hospital.

So, here's where our sweet girl is right now. The voice is back. It's telling her to kill. Sometimes that sounds like a good idea. Sometimes it horrifies her. This is a good thing, because in the past, she hasn't really been horrified by it. It tells her she should do it, her brain registers it as something that sounds fun/exciting/amusing, and she doesn't feel any guilt about it. Right now, she's having periods of time where it feels fun or exciting, but then she's hit with guilt, and feels horrified and disgusted that she would have that thought. She feels afraid that she is eventually going to snap and hurt someone, and the voice tells her over and over that she will. This has caused her to become suicidal, as she feels like the only way to ensure that she'll never hurt someone is to kill herself. She cut herself -- not deeply, but probably ten or so cuts all lined up along her wrist -- and then wore a thick bracelet and long sleeves to try to cover it. She wasn't making an attempt on her life; the voice told her to do it, that it would help, that it would let out some of the pain, and so she did. She has a prior suicide attempt, though, and the cutting is therefore very concerning. She says that her brain has been so overwhelmed with the fighting over these two seemingly inevitable outcomes, and she is in so, so much pain. She's exhausted. She's scared. While it is better that she feels guilt and concern over the homicidal thoughts (because that's a normal human reaction, and she hasn't really felt that way in the past), it is so hard to watch her suffer. Last night, she sobbed until she couldn't breathe, and said she's just so tired of having to live like this. There isn't anything I can do to make her stop hurting, and that is the most helpless feeling of all.

Hope's big fear right now, besides the dueling urges to hurt herself or someone else, is that she won't get out of the hospital. She's not so worried about being in the hospital for a few weeks; she's been though that so many times before. She is worried that we won't be able to fix it this time, and that she'll end up in a residential facility. I want, more than anything, to reassure her that it won't come to that, but I'm worried about it myself. All I could tell her was that we'd do whatever it takes to keep her safe, but would fight as hard as possible to get her home as soon as we can. She knows that she was very, very close to residential treatment last spring/summer, and thinks we'll end up at that answer again. The truth is that it's a possibility. We're in a really bad place right now. If you've followed our story for very long, you know that she's med resistant, and has responded only to high doses of the one med they can use in med-resistant schizophrenia. Nothing else has had any effect on her symptoms at all. Well, we are probably at the very ceiling on this med. Multiple doctors were unwilling to go to even the point where we are now. We found one that would, and it made all the difference for her. She was finally free of the voice, which is pretty much the difference between being able to be out of the hospital or needing to be inside. The last time her clozaril level was drawn (that shows the level that's actually in her blood), it was at the very top of the acceptable range. We were so relieved that it worked, because there was really not much else to be done if it didn't. Well, now here we are. It's no longer working. Our best hope is to increase it, because there aren't many other places you can go after this med, but we don't know if it can be increased. They've already ordered tests to check her level. The best case scenario is that we find that her levels are lower than last time. She's on the same dose, so the amount in her blood should be the same, right? But she's a teenager, and that means changing hormones and body chemistry. It's possible that she's metabolizing it differently than before, making the level in her blood lower than it was, and giving us room to increase her dose. There's no guarantee that would work, but we would hope that a little bump would get her back across that threshold. If we can't increase, or if we do, but it has stopped working for her altogether, things get sticky. We would start stacking meds, hoping that we could find a combo that works. Some of the meds we'd try are ones she's tried before and not responded to, but there is always a chance that stacked with the clozaril, it might do something helpful. The scary thing here is that some people are just resistant, and sometimes nothing helps. When that happens, they move on to just teaching the person to live the symptoms that they can't get rid of. In her case, because her symptoms are dangerous, it's not so easy to just teach her to ignore them or manage them. We would end up faced with the very real possibility that she would have to be indefinitely in a secure facility. That would break our hearts. The worst thing is that she knows the situation, and she's terrified. Of course, no one is telling her that we might be at the point where nothing is going to help, but she is educated on her illness, and knows that some people are resistant. She also knows that when we've been unable to get her symptoms under control in the past, she's had to be hospitalized, and that we've come very close to longer term placement. She walked into the hospital last night, literally shaking and crying, afraid that she wouldn't get out again. She has lost control of her brain, and is scared of completely losing control of her life. 

Please, please pray for our girl. She's so tormented right now. When I visited her tonight, she spent some of the time conversing like normal, and some of the time sobbing, rocking, holding her head in her hands, and pleading for it to just stop. I would try to reassure her that we're not out of options, that we can still try x, y, and z... and she was telling me that the voice was talking over me, arguing, saying that I don't know what I'm talking about, that nothing can fix it, that it's hopeless, that she (Hope) doesn't really want them to get rid of her (the voice) anyway. She just curled up and held her head in both hands and cried. I can't tell you what it feels like to watch your child suffer that way. She says she feels like she's being ripped apart from the inside. And, despite the fact that our circumstances are very different, I rather feel like I'm being ripped apart as I watch her.

We want all the answers. We want to know how this will play out. Unfortunately, all we can do is take things one small step at a time. Here are our steps:

- Step one is that we're hoping for a bed to open up soon. There are no beds available, so she's in a secure observation unit (a holding area, really), rather than on the regular adolescent unit. Beds are in short supply statewide right now, and we expect it to be days before any movement happens. Meanwhile, she's crammed in a small waiting area with twenty other kids. Eight of them slept in a hallway on mattresses on the floor. (Within the secured area, with staff watching them. So she's safe; it's just a crappy situation.) There is always a shortage of adolescent beds, and certain times of the year, they're just overflowing. The end of the year, with schools pushing testing and stuff, is one of those times. Anyway, we're hoping that a bed will open up at the facility where she is, and that she won't have to be transferred to another place, which can happen if a bed opens up somewhere else first.

- Step two is hoping that when she does get into an actual unit, we have a doctor who is  both knowledgeable and willing to try whatever it takes. She is an anomaly. The admitting doctor told me last night that honestly, he's seen very few people as ill as she is, and never anyone near her age. We know this. We hear it all the time. Unfortunately, it means that no one knows what to do with her. What is the standard of care for a 14 year old female with med resistant schizophrenia and the type and severity of symptoms that she has? There is no standard of care, because it doesn't happen! We were talking last night about possibly needing to think outside the box, and then someone sort of joked, "Who are we kidding... There is no box." We need to get the right doctor. Doctors who are familiar with schizophrenia don't see kids, and doctors who see kids don't see schizophrenia, and no one ever knows what to do with our unique girl. I told her last night that in a world of horses, she's a unicorn.

- Step three is getting an idea of where her clozaril level is right now, so that we'll know if we can increase that med. 

- Step four is to either increase the clozaril or start the process of stacking meds to see if she responds to any combo. 

- Step five is to try to get her home as soon as we can safely do so.

Throughout all of these steps, we will pray, cling to hope, lean on each other, and pray some more. I remind myself that there is always hope. There are several reasons that I chose Hope as my sweet daughter's pseudonym for this blog, but one is simply to remind me that hope is ever-present. We hope and pray for the best in this situation, as always. 

Hanging On

"Hope is the thing with feathers that perches in the soul, and sings the tune without the words, and never stops at all"          Emily Dickinson

Where do I begin after such a long time? I apologize for not updating for nearly three months. I want our story to be told, and I do believe that it's helpful for it to be out there, but I procrastinate terribly sometimes. It's not always easy to share, and sometimes I put it off until my guilt manages to outweigh my hesitance. I'm trying, though. I'm committed to keeping the conversation about mental health going. Forgive me when my side of the conversation lapses a bit. 

Most of the last three months has been good, relatively speaking. Compared to where Hope was several months ago, the last couple of months have been good. In fact, there was a period of time when we all agreed that she was the best we've seen in more than a year. She was social and interactive (relatively speaking, but still...), she was playful, she laughed, she often genuinely seemed to be enjoying herself. Friends kept telling us that they couldn't believe how good she looked. In fact, there are some people in our lives who had never seen her look like that, and didn't know she had that in her. I think sometimes people just assume that by nature, she's quiet, not very social, not very talkative. They don't understand that that's not her nature, and that's why we describe her as not herself when she's like that. Anyway, she has been quite animated lately. Life is never easy, she's never her old self, and all the things I mentioned in my last post apply to our lives, even in the best of times. Those "best of times" sure are sweet, though. It's the closest we get to normal, whatever that means, and it's the closest we get to having our old Hope back.

In the last few weeks or so, we've been faced with the fact that she's slipping again. She's not at a low point right now; if you had last seen her several months ago, you'd still think she looks better now than she did then. Compared to how she's been the last couple of months, though, she's definitely going downhill. She always needs significant time alone, but when she's at her best, she enjoys being out and about for a few hours at a time. Right now, she can still tolerate being around people, but it's getting harder. She's less likely to enjoy herself, and becomes annoyed pretty quickly. (Though at this point, she's still able to put on her polite face, and her irritation isn't visible.) As she slides down that ugly hill, she will be less and less able to interact. Eventually, she gets to a point where she does almost nothing but sit motionless and expressionless, all day every day. She will respond if spoken to, but does not initiate conversation. She will be a hollow shell of herself. We're not there, and I'm so thankful for that. It is hard to know that's where we're headed though.

The things we can actually see and evaluate most clearly, more than the social things I described above, are the cognitive symptoms. Even when Hope is at her best, she has problems with executive function, working memory, motor planning issues, etc. At her highest points, though, she is relatively functional. As she starts to slip, we see these things become bigger and bigger. One recent example of this is the fact that twice in the last week or so, she walked away from a sink with the water still running. It simply didn't occur to her that she should've turned it off. Another example happened last Friday, as she answered a phone call by turning on the phone and simply holding it to her ear. After several long seconds, I said, "Say something!" Afterward, I asked her why she didn't say anything when she answered. She looked at me like that was a stupid question and said, "I was waiting for him to say something. He called us." I asked her how he was supposed to know she'd answered, and she said she didn't understand what I meant. I said, "When you answer the phone, you say 'hello.' That's how they know you've answered." She just stared at me, blankly, and finally said, "Oh. Yeah..." This child is 14 years old. It's not like she's never answered a call before. It's not like she hasn't been picking up play phones and saying "hello" since she was two. This time, though, the association between those things in her brain just weren't there. A few days ago, I realized that the back of her hair was matted into a baseball sized mass, which I assume was developing underneath for a while, and I didn't notice it until it was large enough that it couldn't be covered by a layer of hair over it. I haven't been brushing her hair recently, because she'd been doing a good job, but I guess we're back to that again. 

As for the all-important positive symptoms, I can't say if there's been an increase. She's still not talking about that. For four months now, she's denied having any hallucinations. With her history, we know that's unlikely to be true. She is still sticking to I'm not hearing or seeing anything, and I wouldn't tell you if I was. She knows how to play this game. She knows what hospital admission criteria are. She's tired of hospitalizations, and she knows what to say to avoid them. Is there a chance she's telling us the truth? Perhaps. Given her history, the severity of her symptoms, her resistance to antipsychotics, etc., it's not likely. We would love to believe that she's telling us the truth, though. We hope for the best case, but follow all procedures for the worst case, so that we can keep everyone safe. 

If we're Facebook friends, you may have seen an article I shared a few days ago. It was written by a woman whose son has schizophrenia. If you didn't see it, and you'd like to check it out, you can find it here: http://www.usatoday.com/story/news/nation/2014/11/16/schizophrenia-mental-illness-treatment/18647395/. When I posted, I shared a paragraph that really resounded with me. Despite her relative good fortune, Laura says she can never move forward because her son never stops dying. "Twice a year, right in front of me, he disappears into psychosis, and there is very little left of who he is. Then medicine resurrects him for a few months, I have much of my child back, then he dies again." I don't know how to explain it to someone who hasn't lived it, but this is how we feel. I hesitate to use the word "death," because I don't want to minimize the pain of any parent who has ever lost a child. Please understand that I use that word because I can't find another way to describe the pain and anguish of watching your child cease to be who she once was. I do not use it lightly, though, and I don't mean to suggest that I know your pain.

Whatever word you use, whether it be death or loss or something else, it is painful to watch someone you love slip away. Much like a person with dementia or Alzheimer's disease, our Hope loses herself when her illness is at its worst. As the quote above mentioned, it happens over and over. Schizophrenia cycles, and while we cherish the times when she's at least recognizable as some form of our Hope, we always know that we're going to lose her again. There is some comfort in knowing that we'll probably get her back, in time. This is not assured, though. With repeated psychotic breaks, people often decline over time, and they don't always return to as high a level of functioning as the last time. On top of that, there is the constant fear that one day we'll lose her altogether. The suicide rate in schizophrenia is frighteningly high, and she has attempted before. We worry that she'll just get tired of it all, and decide she's done. Even if we get to keep her here on this earth for a very long time, and even if she cycles back around to a better place again in a few months, it is still hard to watch her go downhill. 

For right now, we are trying to soak up what is still a pretty decent version of our little girl. It is hard every day, though. I've always liked the saying, "It doesn't matter if the glass is half full or half empty. Be grateful that you have a glass, and there is something in it." I try to live that way. It is so, so hard, though, to be grateful that there's something in your glass while watching it slowly drain away. How do you not focus on that decrease? I do enjoy the time I spend with my girl now. It's not always easy. She's not always pleasant. She often resists being around others, so it can be hard to spend time with her. But there are times, and I soak up those times. It hurts, though. When she smiles a real, genuine smile, my heart leaps. But then it sinks with worry about how much longer it'll be before it's gone again. My hopes are built on little things now. We're only a week from Thanksgiving. Hopefully, she'll still be herself enough to enjoy visiting with extended family. What about Christmas? It doesn't seem likely that she'll decline slowly enough to still be functional by then. It's also not realistic to think that she'll be on the upswing by then, either. There's a good chance that Christmas will pass with her in a pretty flat state. I hate to think of that. I love the Christmas season, and I love doing it with my family. I want to bake cookies, and watch movies, and look at Christmas lights, and shop, and wrap, and commit random acts of kindness... the list goes on and on. It all feels so weird when we have to do it as a family of three plus one, rather than a family of four. I don't want to make it sound like she's ever excluded, but sometimes she's just not present, even when she's there. It feels sort of like the three of us are carrying around one of those life-size cardboard cutouts. Or like we're living some kind of weird Weekend at Bernie's story. We try to make things feel as normal as possible. We try to teach our son that it is possible to choose joy and to enjoy experiences even when everyone isn't participating. We try to remind ourselves of that fact. It's sad, though. So many times, in so many ways, loving someone with schizophrenia is just really sad.

I don't want to write a novel, but I want to touch on one more thing. People often ask how they can pray for us, and there's something specific right now besides just Hope's health. (Though that is, of course, always the big thing.) We're faced with really bad news for this coming year's health insurance situation. Our plan will no longer be carried, and we'll be forced to switch to a plan that covers a much smaller number of providers. We have two different options, and each covers a major hospital network in our area, where our old plan accepted both networks. No matter what we do, we'll lose at least one member of Hope's current team. It'll probably end up being the therapist that we love. We'll also be in a situation where only one local psych hospital is in network, and that's scary. When a hospitalization is necessary, they start a bed search, and you end up wherever they find a bed first. There is no choice in this matter, so we very well could end up with out of network hospitalizations. Either of these new plans, with drastically reduced numbers of providers, is still going to mean a huge increase in monthly premiums. I don't mind talking numbers here, since insurance is no longer personalized and people are all charged the same based on age, gender, and location. Last year, we paid a little over $1,200 a month. This year, that same plan cost us a little over $1,500 a month. The new one will be $1,879. Yes, you read that right. In order for us to get the coverage we need for our very special girl, we will be paying nearly nineteen hundred dollars a month, for four people, for premiums alone. This is before copays, before coinsurance, before non covered expenses, and this is a plan with drastically reduced numbers of providers, and the forced loss of a loved and trusted therapist. On top of all of that, we got a letter in the mail today saying that Hope's psychiatrist has to contact them and basically convince them that she has to be on the particular med that she's on, or they won't cover it in 2016. The whole thing is a train wreck. The state of our current insurance system is a wreck. I'm not one of those who blames the Affordable Care Act, the president, or whomever else people are blaming these days. The ACA did some great things. It was an attempt to fix a badly broken system, but the system is still rather broken. I have no interest in politics whatsoever, but have been dipping my toes into the world of advocating for policy change, because people all over this country are going without needed care, or facing financial ruin in order to get the care. Change happens slowly, though. In the meantime, we have to manage to pay astronomical costs for Hope's care. It's stressful. It's stress on top of stress. 

I hate to feel like I'm always a bringer of negativity. I want to leave people with hope. There is always good to be found, if you look for it. Since we're so close to Thanksgiving, I want to tell you just a few of the countless things for which I am thankful. I am thankful that we were able to have a period of relative stability. I am thankful that our Hope has been at home for nearly 5 1/2 months straight -- the longest period between hospitalizations since the onset of her illness. I'm thankful that, despite the stress over costs, we've never had to decline any treatment, therapy, or med that we thought might be helpful. I'm thankful for blessings that far exceed what a large majority of the world's population can even dream. I'm thankful for a husband who works hard. I'm thankful for a daughter who shows me every day what strength is. I'm thankful for a son whose tender heart makes me a better person, and whose laughter fills my heart up. I am thankful for extended family, and for friends, many of whom are at least as close as family. I am thankful for you, wherever you are right now, spending time reading about my little family, and hopefully taking something away from our story. More than anything I am thankful for the oceans of grace that my Savior lavishly pours out on me. And on my hardest days, when I am completely torn apart by my daughter's brokenness, and when I fear that her days on this earth will never be easy or fair or comfortable, I am thankful for the knowledge that someday she will be made whole again. 

I hope you have a wonderful Thanksgiving holiday. The kids and I will be heading to my hometown to spend some time with extended family. Unfortunately, my hardworking hubby will not be able to join us, but the way I see it, that just means we'll have to turkey all over again when we get back! We've canceled appointments for a week, and gotten permission from psychiatrist and pharmacist to get a little longer supply of meds than we usually get -- you know, just the regular things families do before they travel -- and we're looking forward to seeing some of our very favorite folks. 

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