A Long December

It's been a long December and there's reason to believe maybe this year will be better than the last. I can't remember all the times I tried to tell myself to hold on to these moments as they pass.          A Long December, Counting Crows

It's been six months since this terrible blogger last updated. There haven't been any really major developments or events, and it has now been six months since Hope's last hospitalization. Not all of it has been easy, but there hasn't been anything that warrants hospital admission. In our world, this is something to celebrate.

The rest of the summer passed with Hope pretty much the same as in my last update. She wasn't at the height of functionality, but it wasn't the worst of times. Something she kept asking to do when she was in the hospital this summer was to visit the amusement park as soon as she got out. However, we discovered that she's no longer really able to ride roller coasters, which has been something she's loved since she was seven years old and tall enough to ride one for the first time. She tried a couple of her old favorites, and melted down attempting it. She screamed and cried, struggled frantically to get out, and baby brother had to hold her hand all the way through. (There are no words for the sweetness of that boy.) She cried as she talked about how she just keeps losing things she used to love, and my heart broke at the truth of that statement. 

The fall passed similarly to the summer. The highlight of fall was a trip to Orlando where we spent a few days visiting some Disney parks, and then a few days visiting family. This is the biggest thing we've attempted since Hope became ill. We've done beach trips, but that's just a four hour car trip and then a vacation of relaxation. Orlando is farther, and Disney is more intense, and we were a little worried about how it would go. There were moments of fun, and moments that were hard. The first park day was a mix of fun and stressful for Hope. On the second park day, she was so flat and disconnected that she wasn't even able to follow as we walked or notice that we were moving forward in lines without us getting her attention and telling her that she needed to step forward. We rented a wheelchair for her, so we could keep her safely with us. It was hard, this visual reminder that she's not okay. It was good for her, though. It gave her a bubble of personal space, it took away the need for her to stay engaged, pay attention, focus on everything around her, etc. After a while, in this low-stress little bubble, she perked up. She continued to ride in the chair all day, but would get out for rides/attractions. She did end up participating in the fun stuff that day, and that's the important thing. She didn't interact much with family when we visited, but it was still nice to be with loved ones, and they do show her love no matter her current state. <3

Symptomatically, Hope is doing similarly to my last update. I broke down a number of different categories and symptoms there, so I won't do it again here. She's doing relatively well socially, in that she is taking one class that she really enjoys, and has grown close to a new friend over the last few months. She still only engages for maybe a few hours a day, and feels drained by the effort. She can't always manage it, either. One day last week, some family friends that she really likes spent a few hours here, and despite being in the same room as us, she was unable to engage at all beyond saying hello and answering a direct question. Most of the time, though, she can enjoy things and people for a little while at a time, at least a few days a week. For her, this is success. Our biggest daily battles continue to be just keeping her functional. She doesn't do well at caring for herself, her belongings, her surroundings, or keeping up with the things she's supposed to do. When she completes tasks/chores, they're done sloppily and/or improperly. There may be aspects of laziness or teenager-ness in it, but there's also genuine inability to see details or remember the proper way to do things. The fact that she's always half disengaged from the real world means she sort of crashes around the house, banging into things, knocking things over, dropping things, making messes. When she's in a good place, she's able to joke about it. We call her a wrecking ball, or joke that she looks like the alien guy in Men in Black who is wearing a human body for the first time and not using it very well. (No haters, please. She uses humor to deal with her situation, and it's easier to say these things in a way that's amusing than for her to be angry that her brain and body don't work very well together.) She breaks things often enough that we have a broken glass protocol that we've gotten really good at. We've also learned to do things like check the stove every time we walk through the kitchen. (It's not even enough to do so after she's cooked something. One day, she was going to make herself some lunch, put a pan on the stove and turned it on, and then got distracted by something else and left it without ever even cooking anything.) 

School continues to be one of her biggest struggles. Her brain just doesn't always process information very well. Sometimes, simply following conversation is hard. There have been times when she's asked me to repeat something more than once, and then finally said, "I hear you, but I don't understand what you're saying." Imagine, then, if following simple conversation is hard, how hard it must be to take in and use new information. Shortly before our holiday break, there was a day when she couldn't figure out what she was supposed to be doing in math. I was trying to explain it to her, but she couldn't understand at all. I realized that she had done the same thing the day before, so I said, "Okay, let's go back and look at what you did here. See, you did such-and-such, and then you did this thingy, and then you whatevered." (That may not be the exact process, but it was something like that. ;) ) She couldn't understand the thing from yesterday. Imagine that. She was doing it one day, and the next day she couldn't understand what the process was supposed to look like. She asked if she could step away from it for a while, and then she just cried. "I just hate that my stupid brain won't do this. Isaac can do it with no problem and he's twelve! Why can't my fifteen year old brain understand a simple concept?" (It was a review concept, and yes, her twelve year old brother does fine with it.) I wish I could say this frustrating incident was an isolated one, but it happens frequently to her. School is a constant struggle. We've spent the last few years trying to figure out if there's a better way to do things for her, but her entire care team has come up with nothing better. No manner or method or setting can change the fact that her brain is tricky, that it isn't always very good at remembering things or using skills, that its ability to do so varies which means that you can't even plan things out to her abilities because said abilities change, and that the only thing you can count on from her is a constantly shifting playing field. We keep working through it the best we can. We take breaks when she gets to the point where she simply can't handle it, and we push through when she can. I am able to remind myself that education isn't the most important thing for her -- that her health and safety are -- but I am not willing to just give up, either. I don't want to send her the message that she doesn't have to learn like other kids, because she isn't like them or doesn't have the same future as them. I want her to learn the things she needs to and while higher education may not be in her future, I want her to be able to pursue it if she so desires. So I walk the fine and ever-shifting line between "education is important and the key to good things and self esteem" and "education isn't everything and she needs to be healthy and not melting down because of school stress." 

Hope's psychotic symptoms have remained pretty steady. It was hard at first to admit that we'd gone as far as we could with antipsychotics, and that barring new med breakthroughs or miraculous healing she was likely never going to be free of daily hallucinations. She is coping with it pretty well. Keep in mind that we only ever had control over them for a relatively short time, and that for most of her illness she's been dealing with them as a part of her daily life, so that wasn't new for her. The new was just the acceptance that it is going to be this way, where we had previously been trying everything we could to see if we could make the hallucinations stop. The voice continues to be the most irritating symptom. It has all but stopped the violent commands of Hope's earlier illness, though. It mostly focuses on criticizing her and saying mean things to her and about her. It's hard enough for many people to hold onto any self esteem with a critical inner monologue, but imagine if it wasn't just critical thoughts, but what sounds like an actual voice that you experience as being someone totally different than yourself who just criticizes everything you do. As if her illness doesn't already make her feel different, and as if her brain's refusal to functional normally doesn't already make her feel stupid, she has to live with a voice criticizing her, telling her what a freak she is, telling her how stupid she is, telling her how unattractive she is, and on and on and on. I know the voice isn't a real, separate entity, and yet somehow I still find myself hating it. Lately, Hope's had some visual hallucinations that are even more vivid and intense than usual, and she's been afraid. Three nights ago, she was up very late because she was just too scared to sleep, and finally fell asleep in the living room with Dad sleeping on the couch so she wouldn't be alone and afraid if she woke up. The last two nights, she's slept in her room, but with the door open and someone sleeping in the living room nearby. Her usual sleeping arrangement is in her room with the door closed, and an alarm on the door so we can hear if she opens it. Even if we didn't have this safety plan in place, though, she would prefer for her door to be closed and for there to be absolutely no light or sound. That means it's a very far deviation for her to want the door open, some light coming in, the sounds of people nearby, and then someone sleeping fairly nearby. She's very, very afraid, and especially at night. There's nothing we can do but reassure her and make her feel as safe as we can. And, of course, be on high alert because we're leaving her door alarm off. It's hard to get proper rest that way, but what choice do we have? 

Despite all the hard, life is still beautiful. Too many people with our daughter's illness choose not to keep living. She has made that choice before, and thankfully failed in her attempt. When the days are hard and I feel exhausted, I remind myself that she is here. That, in itself, is a blessing. If we can keep fighting for her, keep her living and breathing and learning and loving, help her find happiness and peace, then we are succeeding, even if it doesn't always feel like it. And when I think of even the possibility of her choosing not to live, the possibility of this world without her light, I am reminded that I would rather live days of stress and difficulty than live a single one without her.

I hope your holiday season has been full of love and laughter and all things good. I pray that the coming year brings blessings to all of you. I hope that each of you know that you are loved and cherished and appreciated beyond words. 

Broken and Beautiful

“You are imperfect, permanently and inevitably flawed. And you are beautiful.”          Amy Bloom

Hope is home. I'll lead with that, because it is the most important thing there is to say. If you want to pull up a chair and stay a while, I'll fill in the rest of the details.

The big takeaway from this hospitalization is that she's now showing clozaril resistance. Basically, the last chance antipsychotic med is not working for her, and there's nowhere to go from there. We can stack up other meds and hope to get some increase in stability, but realistically, we can't get rid of her psychosis. She will continue to hallucinate. She will continue to have delusions. She will struggle beyond what she would have to if she were more med responsive. Her illness is very severe, and was never going to be easy, but we've so hoped that we could get as much help as possible with at least controlling or minimizing the positive symptoms. I hate that this sounds like we're taking a defeated stance, but clinically speaking, there isn't a lot to be done from here. When speaking to the doctor, I asked him, "So, we're going to try adding a mood stabilizer, but that isn't expected get rid of the psychosis, right? Is there anything left that we can do for the actual psychosis?" He replied with this less-than-optimistic statement: "Well, there's a lot of research being done right now, and we're understanding more about it all the time. I genuinely believe that in the next ten years, there will be more options." Maybe in the next decade. Yeah... Thanks, buddy. We were aware of this already. The schizophrenia specialist that we saw before we started this med told us that there isn't much after it. We had asked her as well what happens if it doesn't work. If you've been with us for that long, you may remember that she said some people are just med resistant, and have to learn to live with their symptoms. This subset of patients tend to have a much poorer outcome. We so hoped that this wouldn't be the case for our Hope. It would be like telling a person suffering from any other chronic, major health concern that medicine is not an option for them... That their only choice is to ride out the pain and difficulty, and live as much as they can in the circumstances. To be clear, we're not cutting out the clozaril. We can't say that it isn't doing anything, because we don't know what she'd look like without it. We don't know that she isn't responding at all; it may be that she's only partially responding. It is absolutely worth sticking with it, it's just no longer expected to do as much as we'd hoped.

Despite the gloom and doom sound of the paragraph above, we are not done trying to fight this beast. We are aware that there isn't an easy answer at this point, but we will continue to do all we can. She takes four different supplements that some studies have shown can be helpful for some people. None of them are the answer to our problems, but it's worth doing anything that even could make her a little more comfortable. For those who follow here because of schizophrenia in their own lives or those of their loved ones, I'll let you know exactly what we're doing. Hope takes fish oil, hemp oil, a vitamin b complex, and a zinc/magnesium/b6 combo. (All supplements should be discussed with providers. They should also be thoroughly researched to ensure that you're buying something as high quality as you can afford. Some fish oil, for example, can contain high levels of mercury or may have been processed using a carcinogen. Research until you understand the different ways that supplements can be processed, which type is ideal for your specific situation, look for things that are cold pressed, organic, etc.) The other big thing that happened in this hospitalization is that we added lithium. Lithium is very effective for treating things like bipolar disorder, and not necessarily shown to be effective in schizophrenia. However, it is a powerful mood stabilizer, and some patients show some benefit from that. Symptoms are exacerbated by stress, and if a person's mood can be kept as level as possible, they can be as comfortable as possible, and maybe even experience a decrease in symptoms. It's not a magic wand, and may not even result in any change for Hope, but it's worth a try. 

The lithium trial has not been without bumps. Here's where we are right now. Hope has been on lithium for almost three weeks. We don't think we see any benefit so far. We do see some side effects. On the more minor side of things, we have sedation and tremors. Sedation is manageable. Tremors are only a big deal if they affect large muscles, and what we are seeing is that her hands shake -- an acceptable side effect. On the more serious side, we're seeing tachycardia (fast heart rate.) It has increased to the point that it's more than just borderline, and outside the range of where we can leave it long term. On the day before she was discharged, the nurses were concerned enough that they called in the medical doctor to see her. (Psychiatrists are MDs, of course, but they don't deal with physical health. They call in a doctor for that when needed.) He ordered an EKG to see what's going on. The good news is that it's not doing anything other than running too fast (so, sinus tach, in medical terms.) The bad news is that it's running too high to be okay that way long term. We are working in conjunction with her pediatrician and psychiatrist to figure out what to do about this. Her body may adjust some, but it has been long enough now that we would expect it to have done so already if it was going to. There are three options for us bringing it down -- decreasing the med, stopping the med, or adding an additional med. If we don't think the lithium is doing anything for her, the obvious answer is to stop it. In addition to the side effects above, it can throw off your body in multiple ways, and do damage to some systems when used long term. There's always a risk/benefit analysis with meds, and for some people, it's worth it. It really is an incredible med, and literally makes the difference between life and death for some people. Still, it's only worth using if you're seeing improvement with it. If we were seeing improvement, and wanted to continue the lithium, we would have two options. We could either decrease the dose until the undesirable symptoms resolve, or add a med to control said symptoms. Decreasing it could push it outside the therapeutic range, and adding another med is... well, adding another med. We hate to do that if we don't have to. No decisions are being made until next week. By then, we hope to have a clear idea of whether or not it's worth continuing.

Symptomatically, Hope is better than when she went in, but not well. She was at one of her worst points ever, with the paranoid delusion that she was dying, and was suffering so badly. That delusion has pretty much resolved. (On its own, before any med changes. Most delusions will eventually resolve; only a small number become permanent.) She has continued to struggle with some panic and paranoia, both about her health, and about something happening to me. It has been much less frequent, though. For lack of a better way to organize my thoughts, I'm just going to list what she's going through now. That sounds clearer and easier than a wordy paragraph.
* hallucinations - She is hearing the voice. At this point, it isn't really giving commands, as it usually does. Most of the time, it's taunting her. We'll never get rid of it. No meds or therapy will ever help her. Life is hell, and it always will be. Her life will be pain and misery forever. She experiences other hallucinations as well, but none as bothersome as the voice. 
* delusions - She still believes things to be true that don't make any sense. Sometimes she recognizes that they're a result of her illness, and sometimes she thinks that she just understands things on a different level than the rest of us.
* anxiety - She worries that something will happen to her, or to me. She fears for her health, and worries about accidents. Some of her fears are irrational, like the car tipping over when you go around a corner. Sometimes her anxiety is not about anything specific, and just happens. It's most often when she's overwhelmed, though. On Sunday night, we went out to dinner for Father's Day. She got panicky halfway through the meal, couldn't settle down, and we ended up just having to box up our meals and leave. 
* cognitive difficulty - She can't easily follow what's going on around her, and becomes confused easily. You can have a surface conversation with her, but she describes that those interactions are tiring, and she can't sustain it for too long. It varies some from day to day, but sometimes she can't follow simple tv programs or books. She describes that sometimes her brain feels totally blank, like it's not thinking anything at all, and other times, she can't focus on one thing because she can't not hear everything around, and tune out the unnecessary information.
* memory impairment - She can't always recall things that happened, even earlier that day. She struggles to complete requested tasks, especially if you ask her to do more than one step at once. 
* motor/planning issues - She always struggles with spilling things, dropping things, walking into doorways, etc. She has a hard time with the things that a healthy brain does in the background without us even noticing, such as understanding where our bodies are in space, how much force to use to pick something up, how to position just right to go through a doorway. Right now, she's having extra difficulty. For example, walking down the steps is hard and she moves slowly and sometimes still stumbles. She says that she's looking down and understands now this foot needs to move down to that step, but still finds it hard to coordinate just right. It's not really a physical issue, it's an issue with the way her brain processes what's happening around her and how to do what she wants it to do.
* social interaction - She struggles to interact. Part of this is probably attributable to some of the things I mentioned above. If she has to focus hard to understand, and feels somehow removed from the rest of the world, I can imagine that it would be hard to interact, and would just feel less stressful to be alone. This is a hard one to balance, though. She gets stressed by too much interaction, but feels sad when she doesn't feel that she has people in her life. We have to figure out how to give her enough social interaction to feel loved and supported, but not so much that it stresses her. 
* general functionality - I don't even know how else to label this. She isn't taking good care of herself, her hygiene, her chores, etc. without significant prompting. She does things like walk away from the refrigerator or microwave without closing them, showing the inability to properly complete the basic steps of things she's done thousands of times before. These things become particularly bothersome when it comes to things like cooking. She'll want to make something simple for herself, but will forget to turn off the stove. Or she'll be asked to help make dinner, but break all food safety rules (leaving refrigerated foods out, touching raw chicken and then touching everything else in the kitchen, etc.) 

These are all things that have been present in Hope's life since she became ill, though they aren't always as bad as they are now. Schizophrenia cycles, and in her better times, these things are milder and more manageable. In times like this, it feels like so much time and energy is spent just managing her illness. I know that even unmedicated schizophrenia cycles, and therefore it will improve again eventually. However, I don't know what things will look like now that she's not responding to the clozaril. It never helped the negative symptoms anyway, but it did help the hallucinations, and that's a big deal. Now, we just have to see how it all plays out. It's a pretty helpless feeling, really. We hope that with the right support, and with counseling aimed at coping with psychosis, and with hard work on her part and ours, we'll be able to keep her functional and at home.

Home. That's something that was up in the air this time. I kept saying that we couldn't make the decision yet. Obviously, we decided to bring her home. Pretty much every member of her care team felt some unease about either decision. It's hard to bring her home so unstable. On the other hand, it's hard to send her into a residential facility without a clear understanding of what exactly it's supposed to do for her. It's not like they could fix things if they had more time, and it's not like she's just learning how to behave better or control her anger like so many of the kids there. She doesn't deserve to be away from home long term just because her body won't respond to meds. At least not without giving her a fair shot. We don't know how she'll do at home. We don't know what it'll be like for her to try to move forward with her new circumstances. We felt like she deserved the chance to try it. There is a possibility that she will be unable to be safe at home. The possibility exists that she will struggle so badly that our only choice will be to try something more secure than outpatient care. How could we not bring her home and let her try, though? Unless we've got a really good reason to believe that she or others can't be safe, she belongs at home. 

I have been blown away once again by the support that friends, family, and strangers have shown our family. I want to thank every single person who has shown us kindness, in any of a thousand different ways. I try to express that gratitude. If I have ever failed to do so, please know that it is felt. I am frequently brought to tears by both simple and grand gestures of kindness. You guys are incredible. I hate, beyond words, that our circumstances have put us too often into the helpee category, when I'm much more comfortable in the helper category. There's this part of me that wants to crawl out of my skin every time anyone goes to any trouble for me. But if I can sit through that feeling for a moment, I am hit by the most incredible gratitude. If the experience of parenting this exceptional child has taught me one thing, it is that people are infinitely more beautiful than I can even describe with words. I love you all so very much. 

Friendship

Those of you who love my girl will just melt at today's story. Let me start with a little background. For the last couple years, Hope has struggled with the whole realm of friendship. We moved halfway across the country four years ago. Hope made some friends, but initially, they were mostly just people she knew. She would see certain people at the activities they had in common, and maybe even hang out with them a time or two outside that. She had just a few that become closer than that, and most of her time was spent with just one best friend. Then, less than a year after settling in here, and before developing a rich, deep pool of friends, she got sick. The friends she didn't know that well gradually feel away as she withdrew, dropped those shared activities, etc. One close friend moved away. Then there was a big, irreparable falling out with the best friend. Hope was essentially alone.

Now, I don't want to downplay the fact that there have been some sweet girls in Hope's life. There is a group of girls who have included her in outings and activities. There are some great girls in her youth group at church who support her, pray for her, treat her kindly. There are some girls who always go out of their way to speak to her, even when she's not very reciprocal. In spite of these things, she has felt alone. She'll say that she doesn't have any friends. Sometimes she'll say she hates teen girls and all the stupid drama they too often bring, or that she'll never let herself get burned again. Sometimes, though, she'll open up and admit that she feels lonely, that she's jealous of her little brother's active social life, jealous of the girls around her who all seem to have at least someone. She'll acknowledge that yes, there are people in her life, but has felt like it's their moms who make sure she's included. She'll say that they're nice to her on those occasions when she sees them, but she doesn't feel connected outside of those times. No one calls or texts her. There's no one she reaches out to when she sees something funny, or has a hard day. 

Teen girls should have their girls. Guys come and go, parents are parents, but the one steady thing should be your girls. She doesn't have that. And I don't blame the girls around her. She's not always easy to crack. She's not always comfortable around people, she feels like she's so different that she doesn't know how to fit in or that people can't just like her for who she is. After the falling out with the former best friend, there's now no one in her life who knew her before she was sick. And the girls who are there, who have been so good to her even as she is, are very special to me. She's not easy to befriend, though. She goes through periods of time where she's so withdrawn and find it difficult to be with people. The girls who have continued to be friendly with her have accepted that she's sometimes funny and engaging, and other times she'll say hello and retreat as quickly as possible, which I'd imagine feels like rejection if you don't know how hard it sometimes is for her to interact. Being friends with someone as ill as Hope realistically means that you may shoulder more of the friendship balance. I don't want to suggest that she only takes and can give nothing. She is incredibly loyal and kindhearted, and those she loves, she lives fiercely. When she's in her more stable times, she's quick witted and fun to be around. I also think she's inspirational to many. Being friends with her is definitely not a one sided endeavor, but I also realize that it has its challenges.

One of the girls who is dearest to my heart is Amity. (As always, this is not her real name. I've chosen to call her Amity here, because that means friendship.) Amity is the only friend who has visited Hlope in a hospital. She reads this blog (with her parents' permission) and understands exactly what's going on with Hope. And she has never ceased in her support or love of our sweet girl. Those invitations to participate in group outings I mentioned? They always come from Amity or her mom. (Her mama is one of my favorites! But this is Amity's story.) When she learned of the current hospitalization, and especially that there was conversation about residential being a possibility, she was shaken. Her sweet mama offered to bring some girls on a road trip to visit Hope. Unfortunately, she's in a facility that allows minors only if they're siblings. So, she did what she could do. She wrote a letter. I'm sharing here, with your permission. I'll warn you, though, if any piece of your heart is with Hope, this will make you cry. These are the words of a beautiful 15 year old girl:

[Hope],

     I wish that I could be wherever you are right now and give you a hug. So pretend I'm there, I've wrapped my arms around you and am holding you tightly. I won't let go.

     I know that I don't understand what you're going through. There is no way I, or anyone, ever could. But I wish there was someone for you that did. I don't want you to ever feel alone.

     You are so strong, I hope you realize that. You've been through more on these past couple of years than most experience in a thousand lifetimes. I know that it gets bad, but you always come out on top. You always win. Everyday you win.

     If you are able to write back or something like that, please do. I want to hear from you. I want to know how you are doing. 

     I hope you know that you can tell me anything. And I mean anything. You've been one of my good friends since [activity], and nothing will ever change that. I don't understand what you're going through, but I try to get as close as I can.

     Every Wednesday, I have [church activity.] We have a thirty minute small group with our age and gender each night. At the end, before we pray, my leader asks for prayer requests. I always ask to pray for my friend, Hope. (My small group girls have been hearing about you since 2013.) Most of the times, I get really teary and choked up. Getting me to cry in public, if you weren't aware, is a nearly impossible task. 

     You have inspired me in so many ways. I am honored to call you my friend. It's always more fun when you come to [activity.] I feel like I can be more real with you than anyone else, and I hope you feel that way too. I enjoy talking about [interest] and hearing your insights on various topics. 

     I will write again soon, I promise. I'm sorry this is really the only thing I can do for you. If I could visit, I would. I wish I could do more.

     It's Never Too Late. [This is a song Hope likes.]

Love, 

Amity

Are you sobbing? Is your heart so overflowing with the love that this sweet girl expresses so eloquently? Want to hear who rose reacted that way? Hope did. This is the girl who thinks she has no friends. This is the girl who thinks that people are nice to her because they're decent people, but don't care about her personally. She wept. Like, uncontrolled sobbing. I asked if she was sad and she said no, just really happy. When she calmed down enough to explain, she said that she knew her family loved her, and that we have some really great (adult) friends who do, too, but that she hasn't felt loved by a friend in such a long time, and never since she was sick. The girl who has spent two years lonely felt the love of a friend, and her heart just overflowed in the most beautifully heartbreaking way I've ever seen. She wrote back right away, and is looking forward to seeing Amity as soon as she is able to go home.

There are few things in the world as powerful as friendship and acceptance. Honestly, these things have been offered to her all along, but she didn't recognize them. She was too wounded to believe that kindness was just plain kindness, not pity or some interaction that someone's mom was orchestrating. Her illness made her feel so insecure and broken that she was sure she couldn't be loved or accepted by peers in any way other than maybe some pity invitations. And because one girl chose to pour her heart out, because of one simple letter, her view of herself and the world has changed. 

We've loved Hope forever. Many of you love her. She appreciates all of it, and recognizes how lucky she is to have the support system she has. The only thing she has felt is missing is friends her age, and that's something I couldn't give her. My heart is so full of gratitude for the girl who changed the game for Hope simply by saying I'm here, I have been here, and I will be here. Please take a lesson from Amity and tell someone how you feel. Don't assume they know, don't assume they don't need to have it spelled out for them. Tell them. It may have more impact than you could possibly have imagined.

P.S. I'm posting from my phone. It doesn't like the browser I'm using. I can't even scroll back up to see more than what's currently on my screen, so no checking for typos or rereading for clarity. Please  excuse any typos, the odd font, the fact that I can't get back up to add a quote to the top, etc. I'm working with what I've got! 

Overwhelmed

"When my heart is overwhelmed, lead me to the rock that is higher than I."          Psalm 61:2

Hope is still in the hospital. After a five day stay in the city where she is, I arrived home last night, will spend today taking care of some things, and will head back there again tomorrow. I'll try to walk you through the events of the last week, and update you on where we are now. I'll just take you through how our week played out, day by day.

Monday, May 30 -- Hope transfers to new facility. (I had posted that she was transferring Sunday night, but transport fell through and she ended up going Monday morning.) I wrap up things I need to do at home, and make plans to go to her on Tuesday. I speak to her hospital social worker, who I really like. I also get to speak to one of two doctors who will treat her while she's there. He seems knowledgeable (as much as anyone ever is in our unique situation) and comfortable making a treatment plan. He wants to increase her current med, clozaril, if possible, and if that isn't possible or doesn't work, he wants to add a new med. Her care team has talked about this med before, and already agreed before he ever mentioned it that it would probably be a good next move. It is physically hard on the body, and shouldn't be used until you get to the point where you need to, but when you get to that point, it can be a really beneficial med. Doctor orders labs to check her current clozaril level. This will tell us whether or not we can increase it.

On Tuesday, May 31, I wrote this update on Facebook: "Tonight's visit was the hardest I've had with my girl. Eleven hospitalizations in thirty-one months -- countless visits -- and this was the single hardest one. She cried the entire time, and jumped up and walked around in a panic probably four or five times in the one hour visit. She cries a lot now. She is absolutely terrified all the time. She had such a bad panic attack last night that they had to give her something to try to calm her down, which they've never had to do before. [...insert some stuff about specific staff complaints, etc. that isn't all that relevant to the overall update...] She's terrified, she's miserable, she knows (in her mind) she's dying in a strange hospital surrounded by strangers, and there isn't a thing I can do. I know she's in the only place she can get help; there's nothing we can do to fix her outside the hospital. So basically, it all just stinks. Oh, and [Isaac] cried through part of visitation, because it is just so painful to see her like that. Praying that relief for her comes soon!" 

That update pretty much says it all. It was a pretty traumatic visit, and the little guy was so very shaken after watching her cry in terror for an hour. That night, they increase Hope's security level to "close obs." This is not the very highest level, because there is also a one-to-one option where a staff member has to be within arms' reach of the resident all the time. It does mean, though, that she' never allowed to be alone. Most of the day, they're all in a group (eating meals, doing therapies, having recreation times, etc.) or with a staff member (being seen by the doctor, taking meds with a nurse, doing therapy with a social worker). During the times when they are alone, though, (using the restroom, taking a shower, sleeping) Hope has a staff member with her. I'm thankful that they're taking the extra measures to make sure she's safe. Isaac says that he will never, as long as he lives, forget the way she looked. I am heartbroken for both of them.

Wednesday, June 1 -- Still no changes to meds, as clozaril level has not come back. Impatiently waiting. Visitation goes better than the night before. Her day is not significantly better overall, but she is in a calmer state of mind at the particular time we see her, and states that she did spend less of the day feeling terrified. She is sad, and is sometimes still very afraid that she's dying, but she is not at the level of constant panic that she had been. No changes to meds or anything, so this is either just a random calmer day, or the delusion is starting to lift on its own, after about a month of the worst misery she's ever experienced. I pray that it's the latter.

Thursday, June 2 -- Visit is similar to the night before, and fairly pleasant. Hope states that she is definitely feeling less afraid. She's still scared when she thinks about it, but it's not a constant fear, and she is spending more time with it not even in her mind. Clozaril level still hasn't come back. That test always takes a while. All other tests are in, though. She looks good -- blood counts are normal, liver, kidney, thyroid functions are normal, sugars and cholesterol are normal, etc. All of the things that would tell us that her body is struggling with the meds are looking okay, so the doctor says he intends to go ahead and raise her clozaril, even though the test hasn't come back.

Friday, June 3 -- I said this on Facebook (minus a couple typos from my mobile posting): "Tonight's update is not good. [Hope's] clozaril level finally came back (that test tends to take forever!), and her level is, in the doctor's words, "dangerously high." Not only can they not increase, she was pushed up so high in her last hospitalization that they are now decreasing. She wasn't responding at as high as they can go, so our only choice now is to try stacking meds to see if a combination might help. We're adding another med, and while it's our best choice from where we are, it's one that's hard on the body, and not something we wanted to have to do. She is frustrated, and cried the entire visit, and had to be talked down from panic (over the same physical symptoms that we don't think are actually physical) several times. New med starts tonight, and she will remain on constant supervision protocol."

That was a hard day. In fact, "hard day" is an extreme understatement, but I don't have words for it. She had actually had a pretty good day. The fear/delusion/paranoia that she's dying has definitely faded. Most delusions do break on their own, that this one may have pretty much run its course. She couldn't remember if she had even thought about it that day, until the point where she was sobbing, which led to her throat feeling all constricted again, and then that led to panic. However, once she got this news, she was a mess. To her, the heartbreak was over the amount of time she might need to remain in the hospital. She knew that her clozaril could be increased every three days, and that it usually only took a couple of increases to help. Once that option was taken away, she saw it as a suddenly indefinite time period that she just couldn't bear. She cried so hard that she was gagging and gasping, and feeling unable to swallow, and panicking. Such a horrible cycle. She says she can't bear being there any longer, and she just wants to come home. She says she can't bear this illness anymore, that it's not fair and she can't keep living like this. She doesn't want to have to just wait endlessly and hope that some med fixes it eventually. It is more than she can bear right now.

For us, the bad news is less about the time she'll be there. It makes us sad that it might extend her stay some, but that's not the big, soul-crushing news here. The real problem is that the clozaril is no longer working, even at -- beyond, really -- the highest dose possible. When a person with schizophrenia is "treatment resistant" or "treatment refractory" (meaning that they don't respond to traditional antipsychotics) the next move is to the "gold standard" drug clozaril, which works for many. When that doesn't work, the person is considered a "clozapine nonresponder" or "superrefactory" patient. There is no organized plan from that point. There are other ways to augment the clozaril; they can add another antipsychotic, a mood stabilizer, an SSRI, a glycerinergic drug, or ECT. As I was reading in a study this morning, though: "The evidence favoring one augmentation strategy over another is lacking; overall, adjunctive therapy is associated with only modest clinical improvement." (Quote from Schizophrenia Bulletin, 27(4):615-628, 2001) So, yeah... There are still things to try, but none offer significant hope. What we're doing now is adding a mood stabilizer. Because she has failed to respond to another mood stabilizer, we're going straight to lithium at this point. Lithium is hard on the body, and honestly, there is a good chance of it causing health problems down the road. When you get to where we are, though, you don't have many options. We need to keep her alive and as stable as possible now, or we won't even get her to "down the road." We have to hope that it helps. If it does, we accept the risks for now, and hope for the best, or hope that she won't need it long term, or hope that something new comes down the pipeline before it has caused damage. It's not pretty, but we're running out of options. If it works, the lithium would be expected to improve mood stability. This is a good thing, because it could make her happier and more functional. However, it does not solve our biggest problems. It is not an antipsychotic, and is not expected to help her hallucinations. There is some argument that an overall more stable mood could affect that some, because things like stress and extreme moods can exacerbate symptoms, but we don't expect significant improvement on that front. And while it would be helpful if it makes it feel any better in any way, it is not a real answer to the constant psychosis and debilitating hallucinations.

Saturday, June 4 -- Visitation is two hours instead of one on the weekend. Today's is mostly good. Her mood is much better than last night, as she's had some time to adjust to the situation. She's sometimes sad, but not crying or inconsolable. She says she's pretty aware at this point that she's not dying, and isn't so worried about it. This trend has become better over the last few days, and is fantastic news, as we may be pretty much through that delusion. I have to keep reminding myself how nice it is that's she's not constantly afraid. I'm so torn up about the other news that it's hard to focus on what's happening in front of me, which is my girl, mostly relaxed, playing a card game with her little brother. 

Sunday, June 5 -- Hope cries through the entire two hours. She's tired of being here, and wants to go home. She wishes she at least had some idea of when she might go home, so she could at least count down and look forward to it. As it is, all she can do is wait in some awful purgatory. She is tired of being sick, being out of control of it all, and just being an unwilling passenger in this awful ride that she can't get off of. She isn't always clingy, but in this visit, she snuggles up next to me, I wrap my arms around her, she puts her head on my chest, and she cries for an entire visit. Isaac cries, too. She is so very sad that we're going back home for two days. I tell her that we have to go back, because there are some things I need to do, but that we'll only stay one day. It it almost physically painful to leave her there like that and drive away. Isaac is feeling defeated and broken, and says he just doesn't understand why this is all happening to her. I don't know what to tell him except that there is no reason. We live in a fallen world. People get sick. They didn't do anything to deserve it, but it happens. It's not a very satisfying answer, but it's the only answer I have.

Today, I am doing some various paperwork, medical and insurance stuff, household stuff, etc. I'm washing and repacking everything from our trip, so that we'll be ready to leave again in the morning. Today will be the only day Hope doesn't have someone there for visitation, and we will have just a ten minute phone call with her. 

On our first round, we spent just one day in a hotel. Some friends have a vacation house about 40 minutes from the hospital where Hope is, and they offered to come down there and host us. We were able to spend four of the five days with friends, which was a huge blessing. We kept Isaac busy, and made sure he could do things he enjoys. This time, we will be in a hotel. Fortunately, though, we have a friend who grew up in that city, and can suggest things to do. On our first day there, she recommended a museum that Isaac ended up really enjoying. (And on top of that, when we got there, we were told that she had called ahead and paid for our admission!) We will keep as busy as we can during the day, and see our girl in the evening. This is our life.

This update is so, so long, but I want to touch on a couple more things. First, I want to thank everyone who has contributed to the YouCaring page that our friend set up for us. It has raised $890. Hotels in beach towns in the summer are costly, even if we're willing to go farther out of the city, and are only looking for something clean and in a safe location, and all of the things that go along with it (gas, meals, etc.) add up quickly. That $890 takes a big chunk out of our out of our costs, though. I can promise all of you that everything donated is going to this specific cause only. If it were to suddenly start growing again, and somehow managed to surpass the costs we're incurring for travel and accommodations, it would go only to Hope's hospital bills. I just want you all to know that we're grateful, and that we would not betray your kindness by using your donated funds for anything other than our girl's care and the expenses associated with it. Thank you to those who have donated, including some donors who chose to remain anonymous and at least one whose name we don't recognize, and were therefore unable to thank personally. 

My last post mentioned the possibility of residential treatment, and I wanted to address that as well. It's still on the table. With the probability that we won't be able to affect her hallucinations at all, we're in a pinch. When meds fail, they start using heavy therapy to teach a person how to function with the symptoms, because they have been unable to get rid of the symptoms. For her, this will be very hard, because of the nature of her hallucinations. When she was hospitalized this time, it was partly due to the extreme distress over the paranoia/delusion that she was dying, and that is better now. But if you remember, just a month before, she was hospitalized only because the voice was making her so incredibly miserable that she was on the verge of killing herself, because she saw it as the only way to keep everyone safe. If we can't affect the hallucinations at this point, she will have to somehow cope with the voice. We don't know how that will go. So far, it has never gone well, but we've been fortunate that so far, we've always found some way to help for at least some period of time. Now we have to decide if we can take her home with really strict supervision, and see how it goes, or if we'll need to put her into a residential facility for a while, both to provide her with more frequent therapy and more intense support, and to keep her at a higher level of supervision while we see how she copes. Taking her home is terrifying, and will be incredibly stressful. Even considering longer placement is heartbreaking, and will just crush her. Please pray that we are somehow able to make this decision, and have some peace about it in whatever direction we choose to go.

Lastly, I wanted to ask for prayers for this Wednesday, specifically. We always covet prayers, but Wednesday is Hope's birthday. Last year, we were afraid that she'd be in the hospital on her birthday, but I got them to discharge her the day before. This year, there is virtually no chance at all that she'll be out on her birthday. She'll spent it there. We can't have any extra visitation that day. We can't bring her a special treat of any kind. It will be a very hard day for her. If you can help pray her through that day, I would very much appreciate it. <3

Movement

"Hands, put your empty hands in mine. And scars, show me all the scars you hide. And hey, if your wings are broken, please take mine so yours can open, too. 'Cause I'm gonna stand by you."          Stand by You, Rachel Platten

I might shake the very foundation of the universe if I post two days in a row, as bad as I usually am at keeping up with things. I wanted to update on what has happened since yesterday, though, because there has been at least some movement. 

On Friday, I had been in touch with another facility. It's the job of the hospital's bed search team to find a bed for Hope somewhere in the state, but sometimes it's beneficial to help them along a little. The hospital I contacted has three locations in the state, and she has been in one of them before. Last spring, when we were looking to get her through an acute facility and into a PRTF (residential) one, we used this hospital. They have both types, and we thought it would be the easiest way to make that transition if we needed to. As it turns out, we were able to stabilize her enough not to need the PRTF, and she discharged to home instead. However, knowing that it's a strong possibility again this time, it made sense to reach out to them again. Their admissions department knew that they had one female discharging that day at the one location (a couple hours from home; this is where she was last year.) She was willing to hold that bed for Hope, if they could get the hospital where she was waiting to send them a referral. I worked on that throughout the day, along with a social worker and a nurse at the hospital who helped me keep pressure on them, but the bed search team was too slow in putting her referral packet together. That bed was filled by someone else, and we would have to wait. However, I also discussed PRTF with the admissions dept at the other hospital, and got the ball rolling on that. The application and most associated paperwork was completed, faxed back to them, and passed on to the PRTF director there. The only thing they still need will come from Hope's outpatient providers, hopefully early next week. 

Today, a bed opened up at another location of this hospital group. It wasn't the location in our city, or the city a couple of hours away; it's the third location, about three and a half hours from us. However, it is still with the hospital group that we wanted. It's a good hospital, from the feedback we've heard through a couple of people we know with connections to staff there. When Hope has been a couple of hours from home, I've gone back and forth, spending a few days in a hotel, and then a day or two at home, and back again. I can do meetings at the hospital, and I can visit my girl for a few days at a time, and then I can come home for a little bit to do what I need to do here before heading back again. This is trickier. Three and a half hours is not an easy drive. Hospitals understand that when a person is transferred far from home, family can't always come, and they're willing to do most things by phone, with at least one or two family meetings in person. However, I just can't leave my child that far from home, with no one nearby, no one to come during visiting hours, and just a ten minute phone call home each day. I want to be there. I want to be able to do hospital meetings in person, and see her when I can (even if that's only an hour a day in a psych ward), and for her to know that no matter what, we'll do anything in the world to just be there for and with her. 

Financially, this stinks. It is way too far to drive back and forth, so it means staying there for some period of time. Hotel, gas, food, etc. adds up fast, and especially when it's piling on top of a big stack of hospital bills. This just isn't the time for thinking about those things, though. You do what you have to do, and think about that later. Yes, it adds up quickly. This is even truer in a beach town in the summer, when hotel rates shoot up. But what choice do we have? She needs help, and this is the best place to get it right now.

Enter the world's best friends. I shared on FB that Hope would be transferring to *insert city here* and that it was a less than ideal situation, financially speaking. Within minutes, a couple of people said that they knew people in that area, and would ask if they had any insider tips on where to stay. Within another hour or two, there were a number more friends who said they'd ask people in that area. I had replies on my post, private messages, and texts telling me to try this, or check out this link, or contact this person. So far, we haven't gotten any solid leads on anything that would be better than just booking ourselves online, but I know there are still people out there working on it. And honestly, even if nothing comes of it, I am so touched by the effort.

While all of this was going on, I got this from a sweet friend:I know you would never, ever, ever want this. but I want to start a YouCaring donations page for you guys. So many people love you and want to help, and this is a tangible way for them to help. You will need it for gas cards and restaurant gift cards and things like that. But I won't do it if you don't want me to, so just say yes or no when you get a second. <3 to all of you. She's right that the idea made me uncomfortable. Touched, but uncomfortable. We've made it through ten previous hospitalizations, four of them out of town, and have managed to make it work. But then I started really thinking it through. It does add up so quickly. There are bills coming in from last month's hospitalization, and bills from this one will follow soon behind. Yes, we've been fortunate enough that we've always done whatever is best for Hope at the time, and never had to decline or alter treatment because of cost. On the other hand, we started talking/thinking/worrying about how much this was all going to cost before even hanging up from the call where they told us they'd found a bed. Like it or not, the financial side of this is a stressor. And so, I accepted the offer from the friend to set up a YouCaring page. Several people have donated already, and it just blows my mind. I don't personally know three of the five who have donated, they're people who know about us through friends or family. How big must the hearts of these sweet strangers be, to give their own resources to help us out? I am definitely still uncomfortable in this position, but also so much in awe of it. I can't even wrap my mind around all of the ways in which we've been shown kindness through our sharing of Hope's struggle. 

Our current plan looks something like this: Hope is in transit now. Transfer between psych facilities happens by sheriff. (That was so hard the first time, knowing that she was in the back of a cruiser. If they have only her, she'll ride unrestricted in the back of the car or van. If they are transporting more than one person at a time, they cuff them to be sure everyone is safe. That breaks my heart, and I pray that it was just her this time.) She should arrive there around 10:00 tonight, and the facility (with whom I've already spoken) will call to let me know that she has arrived. We will probably not head there tomorrow. I have many things I need to do in order to be ready to be out of town, including getting some additional info for the PRTF folks and the insurance folks. The hospital won't need us, as they never schedule meetings or anything on the first day there, and especially because it's the Monday of a long weekend. And Hope knows we won't be there to visit on Monday, that we'll just talk by phone that day, and that we'll be there Tuesday. On Tuesday, the little guy and I will head to where our girl is. We'll stay in a hotel there, and try to find parks and things to keep my extrovert occupied for the huge chunks of time we can't be at the hospital. (Most psych hospitals only allow an hour of visitation each day. It makes sense when you consider that they're supposed to be focusing on themselves, and that some families are not good influences and would hinder treatment. But it honestly just really stinks.) We'll plan to be there until Sunday. Isaac has an event that he's really looking forward to on Monday, and being gone from home for more than that at once gets difficult anyway. So, we'll come home Sunday spend Monday and maybe even Tuesday here, and go back again at least by Wednesday (which is Hope's 15th birthday.) I don't know how long this stay will last. The average stay is seven to ten days, though she's spent as much as three weeks in the hospital before. We'll plan to spend most of our time there, with just a day or two at home each week, for as long as she's there. 

I don't know what happens next. The best case scenario is that she's quickly stabilized with a quick tweak or two of her meds. We'd be a little hesitant to believe that everything is all better even if she looks more stable, considering how quickly her meds failed again after the last adjustment. But you never know, and we might try bringing her home if she looks absolutely great. There is also a chance that she'll go into a residential treatment facility after this acute hospitalization, especially if we're unable to get a response to the things we're able to try while she's there. If she doesn't look so perfectly healthy that home is the obvious choice, or so incredibly unwell that PRTF is the obvious choice, then we'll have to make a hard decision. This decision will ultimately be ours, but will be made with input from her entire care team. We would appreciate prayers for guidance for all of us.

Thank you all for everything. I have no words for how touched my heart is by all of the response we continue to get to our girl's story. None of us ever asked to live this struggle, but I am at least thankful for the incredible glimpse at the very best in humanity that we've seen through it. <3

Unwell

"But I'm not crazy, I'm just a little unwell. I know right now you can't tell. But stay a while and maybe then you'll see a different side of me. I'm not crazy, I'm just a little impaired. I know right now you don't care. But soon enough you're gonna think of me, and how I used to be." Unwell, Matchbox Twenty

So...Hospital. Again. Here's the story...

We were at a restaurant last Saturday night, celebrating the finish of the kids’ spring play. Suddenly, Hope stood up with a panicked look on her face, and said, “I can’t swallow!” She is usually very controlled in public, but she was clearly so panicked that she didn’t consider the fact that she was jumping up and down, pacing, and talking loudly. She kept saying that she couldn’t swallow. She was breathing, because she was talking. She was picking up her drink and clearly drinking it. She had already finished eating and wasn't trying to eat anything when it started. But she kept saying that she couldn’t swallow. (She did acknowledge that she could swallow her drink, but that she couldn’t swallow otherwise.) Fortunately, we were out with some extended family, including an MD and an RN. The doc took her outside to try to calm her down and get to the root of the problem. I gave them a few minutes and then followed.

I learned that since shortly after her last discharge, Hope has been living with constant terror because she knows she’s dying. Not eventually. Not soon. Like, now. She sits around all day thinking of nothing else. This day will be her last. She will not wake to see another. She’s not certain of the method or exact timing, but it will be very, very soon. She understands that most people don’t know in advance when they’ll die, but says that because her brain works differently (sees and hears things others’ can’t) hers is able to tell. It is her body, and it knows it’s about to die. There is no amount of rationalization that can convince her otherwise, because unfortunately, you can’t reason a person out of a delusion.

Back to the scene at the restaurant. She was sobbing, pacing, and unable to calm down. She knew for certain that she was dying. She’d known it was coming, and this was how it was going to happen. We hurriedly took her home. When she got out of the car, she sat down in the driveway, held her head in her hands and sobbed with a depth of grief and terror that broke our hearts. Then she lay back on the driveway, and just screamed. Her dad and I spoke as reassuringly as we could to her as we stood helplessly by. She wasn’t calm enough to go inside, so I offered to walk with her. We walked up and down our street in the dark, just breathing, for a long time. She cried and cried, and as wave after wave of terror came over her, the cries would turn into panicked wails. Eventually, I convinced her to come inside and try just sitting quietly. She continued to cry, and we continued to reassure her that everything was okay. We told her that even though she didn't think she could, she was, in fact, swallowing. We told her that even if she couldn’t, it wouldn’t be a life or death situation; that there are people who are alive and well without being able to swallow. We assured her that it wasn't a physical problem and that her brain could do even things as strange as telling her she can’t swallow when in fact she can, and compared it to things like other hallucinations and delusions and phantom pains in amputated limbs. We said all of the things that might help a person come to a better understanding of the situation, if the person’s brain worked properly and was able to reality test things in an appropriate way. It didn’t matter. To her, none of that evidence is stronger than the fact that her body knows it’s dying. Eventually, she started saying that she was exhausted but too afraid to go to bed. We brought a mattress into the living room where she could fall asleep supervised, and promised that either mom or dad would sleep on the couch.

The constant terror of dying continued, along with periods of insistence that she can’t swallow. She spent the next few days crying off and on, and sitting around looking miserable the rest of the time. I took her to see her pediatrician on Wednesday, not because we thought there was anything wrong, but just to be sure that we’ve explored everything. It's still the right thing to do when your child complains of a very distressing physical symptom. The pediatrician saw nothing, but did order a modified barium swallow study just to be sure. That may be done sometime down the road, but this hospitalization happened first. The visit with the doctor actually did make her feel somewhat better, because there isn’t any kind of growth or anything like she imagined, but she has continued to believe that she’s dying. She says that maybe that’s not how it’s going to happen, but it is still going to happen. She is so convinced that this is just reality, just something she knows to be true, that when I used the word delusion to describe it to the doctor, she snapped, "Stop calling it that! That's not what it is!" 

Meanwhile… On Monday (two days after the swallowing thing started, two days before the ped. visit) we were driving back from her regular blood draw. She was reclined a little in her seat, eyes vacant, mouth hanging open, just looking spaced out. Suddenly, she bolted upright and said, “Mom! The voice is talking!”

Yep. The voice. It’s back, and she’s hearing it often. This is less than a month since we last increased her clozapine, and by a pretty decent amount. So… now we’re looking at not only a major delusion, but also frequent and harmful hallucinations. Oh, and constant terror. The voice is mostly taunting her about dying. It tells her that she is, that only the two of them know the truth, that it’s going to happen soon. It argues with everything we say when we try to reassure her that things really are okay. It also sometimes tells her that she has to kill someone, and that she needs to do it soon, because she doesn’t have much longer herself. She says she has no desire to do that, but it's still hard to hear it. She was miserable already, and now the voice is making it so much worse. 

My poor girl is describing this as the very worst thing she has ever experienced. She says that it's worse than when she's been suicidal. When she's suicidal, she says, she's not afraid. There is nothing in the world worse than being scared all the time. She says that sometimes she thinks that if her death is going to happen soon anyway, maybe she should just do it so she can be in control. She says she's not suicidal, because she doesn't want to die. And she also says that it's more like an intrusive thought than suicidal ideation, and she wouldn't really do it. Still, you can't just not worry about statements like "sometimes I think I should just do it." 

In addition to the delusions, hallucinations, and fear, she is very detached. She usually isn't able to express what it feels like in the moment; only in her better times can she sometimes describe what it's like in her worse times. However, a few days ago, she told me that she was feeling disconnected. She said that despite the fact that she'd been sitting there watching tv for hours, she had no idea what was going on. "Things are moving and people are talking, but I don't know what's actually happening unless I focus really hard." I asked if she was having a hard time understanding what I was saying when I was talking to her, because sometimes she wasn't responding very much. She said, "Yes. Well, I can understand what we're talking about, because I'm talking to you now. But I have to work really hard to hold the thoughts together." She also described, "It feels like when you're really lost in thought, only I'm not thinking." Earlier that day, she had spilled a drink, and then just sat there and looked at it until I told her to get up and get something to clean it up. When we were talking about how disconnected she was, she said, "Like, when I spilled my water earlier, I knew that I spilled it and that it needed to be cleaned up. But my body just didn't move. I don't know why." It was both interesting and heartbreaking to hear her describe how she was feeling, and that she was aware that she was pretty lost. 

I spoke to her psychiatrist on Wednesday. She said that she thought we needed to go to the hospital. She wasn't insisting that we absolutely go at that moment, but strongly encouraged us to consider it. I said that it was so hard, because it had been less than month since discharge, because her birthday was two weeks away. She said she understood, as a mom, what I was saying, but that she just didn't think there was any way she'd make it another two weeks. She pointed out that historically she decompensates very quickly. We discussed that it has been such a short time since her last increase that it's really bad news for it to not be working already. She said that not only is hospitalization going to be necessary, but we might need to revisit the idea of residential treatment in order to really be able to give this mess the time and care it needs. (Acute is designed for 1 - 2 weeks, residential is more like 3 - 12 months.) I asked if she thought it was okay for us to have a little more time to just watch carefully and decide exactly what to do, and she said that was okay, but asked us to have a very low threshold for what more we need to see before we take her. On Thursday, Hope had an appointment with her therapist. We caught him up on everything, and he said that he strongly agreed with Dr T. He said that he thought the hospital was the only option at that point, and offered to walk us from his office over to the emergency department in the same building. From there, we knew that her symptoms were too serious for them to even consider not keeping her.

Here's the current situation: She is in the ED's adolescent observation unit, waiting for a bed to open up. As always, she could end up inpatient in this facility, or in another one, if they find a bed somewhere else first. No changes were made to her meds, because the attending in the emergency department said that he didn't feel comfortable with it. He sees adults, and just didn't want to touch this situation. (An adolescent (which he doesn't typically see)... on a high risk med (that isn't even working at this point)... in an incredibly unstable state... I don't understand why he wouldn't want in on a piece of that fun.) We hope for her to get a bed somewhere soon, so they can start working on fixing things. One thing the ED doc did do at my request is order a clozaril level, so when she does get in we'll know if there's any room to increase it. I'm feeling a little pessimistic about med stuff, because even if they do increase it, how long will it help? We did a sizable increase less than a month ago, and look at her now. And if we don't increase it, or if it doesn't help, we have to start the process of stacking meds and hoping we can find a successful combination. It doesn't look good right now. We'll hope for the best, though. There is always a chance that she'll respond to an increase or added med, and then get a longer period of stability out of it than she did this time. Meanwhile, because we know that it may be harder this time, we have already started the process for admission to a residential facility. We just submitted the paperwork yesterday, so we don't have approval from either the facility or our insurance company yet. Honestly, we're still hoping that we won't need to go that route. We had to get the process started in case we do, though. If we get it approved and have to turn down a bed because she's doing well, I'll be happy to have needlessly sacrificed the hours I spent on the process.

As for how Hope herself is currently doing, I don't have great news. She hasn't improved at all, of course, because we haven't made any med changes. There is a chance that even without med changes, she'd cycle back to a better place eventually, but we're talking months, not days. Right now, she's miserable. She's terrified. She's very sick and self aware enough to know it. The day she was admitted, she kept crying and ranting that it's not fair that so many of the kids there are choosing things like bad behavior and substance use, and she can't choose anything. They're not doing what they should do to get better and get/stay out of there, and she would do any amount of work in the world if only she could affect her situation. That was so hard, because it's true that we're all at the mercy of this ugly beast. In some way, though, I was pleased to see her fury at the situation because somehow that's easier than when she's just heartbroken. The last two days, she has looked detached and broken. I take a card game with me every time I visit, and we play, but she doesn't say much except to answer direct questions. I asked today, as I always do, how her symptoms are, and she looked down and quietly said, "The same." I asked if she's hearing the voice as often and if it's saying the same things and she said yes to both. I asked if she still thinks she's dying and still feels really scared, and her eyes filled with tears as she said, "All the time." I pointed out that she's in a hospital, and asked if it makes her feel any safer to know that there are medical professionals all around her. "Well, in a way, maybe I think that they might have a better chance of getting me back when it happens. But if they can't help, then it happens here instead of at home. I'm not at home with you guys, and I just die in some random hospital."  Oh, my heart. What do you even say to that? My understanding that she is okay, and not in danger of dying, doesn't even stand up to hearing her describe how scared she is and how sad she is that she's probably just going to die in a random hospital when all she wants is to be at home. 

For those of you who are praying people, we sure would appreciate the prayers for our baby girl. For both of our babies, really. The little guy jolted awake from a nightmare that Hope had a bow and arrow and was shooting everyone but him, and was afraid to go back to sleep. He struggles with her illness, too, and I really appreciate how many of you tell me that you keep him in your prayers as well. Right now, though, Hope is struggling far beyond what most of us will ever experience, and we would love if you would all help us cover her in love and prayers. I've told her that when she is at her worst, and her brain can't quite tell what's real and keep itself straight, we will hold the truth for her and keep on taking care of her until she's well enough to rejoin us in the fight. And fight we will! We are working hard to get her back to the best version of herself that she's able to be, and as quickly as possible. 

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.