Exhausted

"I've been traveling in the desert of my mind. And I haven't found a drop of life. I haven't found a drop of you. I haven't found a drop... I haven't found a drop of water."          Addict With a Pen, Twenty One Pilots


Those of you who know us in real life know that our sweet girl just spent another nine days in the hospital. I know people come here for details, so here we go. It's been a long time since my last update, so I'll take you through the happenings since last summer, and then tell about the current situation. Settle in, friends, this may take a while. Also, I'd like to state up-front that I will be touching on self-harm and suicide. If these topics may be triggering for you, please skip this post. <3 

The last time I updated, Hope was undergoing ECT. Having exhausted med options, we were looking for anything that might help, and it was worth a try. We ended up doing 20 treatments (well above the six to twelve average course) and didn't see much benefit, if any. ECT works best for depression, and we do think there may have been a little effect on that. We didn't expect it to help psychosis or anything else, and it didn't. 

For really the entire time since that last discharge, things have been unstable. We've had to talk frequently about whether or not it's time to go to the hospital. The self-harm has continued; the longest stretches without cutting have been just a few weeks. We're not talking about a few cuts on the wrist, either. She often makes hundreds of cuts at a time, covering entire sections of her body. As dramatic as that sounds, we've been dealing with it on an outpatient basis. What might send someone else to the hospital, or what might have taken us there earlier in her illness, may not mean the hospital for Hope. We strive to keep her at home as much as possible, and that means saving hospitalizations for only when we're fearful for her life. Cutting is a terrible coping skill, but not life-threatening. Still, we've had to talk many times over the last number of months about the hospital, as she's struggled with suicidal ideation as well. More on that in a bit. 

In mid-November, we found out that my husband's contract job would be ending soon. (While I have pseudonyms for the kids on this blog, I've never named the two of us. For purposes of this story, we're just mom and dad, so from here on when I say Dad, you'll know I mean Hope's dad, not mine.) For the last five years, Dad has been working as an independent contractor for a large corporation, but the functions he performs are being brought in-house, which means his contract is ending. The one positive is that it wasn't an immediate end; the hours decrease over several months, giving some time to find something new. Still, it has been an incredibly stressful situation. From the time he was informed of the coming change, he had just two weeks before the first reduction in hours. We were heading toward a very slow time for everything, including hiring, as we approached Thanksgiving, Christmas, New Years. That stretch of holidays is a really bad time to be looking for a new job. Meanwhile, our life is very expensive. Health insurance premiums alone were just under $2,000 a month through the end of 2017, and $2,500 a month now. (That's just the premium, of course. Monthly costs for copays, coinsurance, prescriptions, etc. are on top of that, and we're now at the beginning of the year, so deductibles are reset.) It's a huge financial burden in any situation, and even more stressful when you're looking at shrinking hours and unsure what comes next. 

Dad has been killing it when it comes to searching for new jobs while still working the old one. He's had essentially no downtime in months, spending hours each evening looking for and applying to jobs, talking to recruiters and potential employers, interviewing, etc. Despite the slow time of year, there has consistently been movement. The odds aren't in your favor for any given job, though. They see so many resumes for each position (one recruiter said it's over a hundred per listing in our area in his field,) and even if you get to the point of being interviewed, there's always a good chance that someone else has experience or skills that more closely match what they're looking for. For the job he was most interested in so far, with a huge company that's known for having great benefits, he got through three rounds of interviews -- the third round was just him and one other person -- and they ultimately chose the other candidate. We were both, honestly, pretty crushed. It happens. It was great that he got that far. But man, did it feel horrible to hear that they'd gone the other direction. 

Meanwhile, right at the end of December, Dad got a job offer. I don't want to sound bratty or ungrateful; we are very thankful for it. Some of the details are less than ideal, though. He's not excited about the specific duties of the job (he's a CPA with a master's degree and a part of it is essentially bookkeeping,) it's a very small company with nowhere to go from this position, and the pay is not great. Our biggest concern is always health insurance, and while the company does have benefits, the health insurance will be expensive to use, with a higher deductible, copays, etc. than our current plan. Additionally, this employer does a 90-day probationary period, and health insurance won't kick in until after 90 days. That means that despite a much lower salary than Dad's previous job, we'll still have the expense of paying our current, very expensive private plan for the next three months. We'll be way in the hole, pulling thousands of dollars from savings each month. We'll also be paying a ton out of pocket because of the new year and new deductible, and then when we get on the employer plan, we'll have a brand new (and high) deductible, and continue to pay pretty much everything out of pocket. *sigh* So yeah... there's a lot about this job that isn't ideal. We hoped another offer would come before he had to accept or start this one, but that didn't happen, and we couldn't turn down an offer. Dad started his new job a couple weeks ago. He still has the contract job, with its decreasing hours, on the side. We can't afford for him not to work out the entire time available to him, so he's working a pretty exhausting schedule right now. Hours will get lower over time, though, and he'll be totally done by the end of March. That will mean a more relaxed schedule, but it'll also mean that our monthly income won't cover our expenses. Obviously, he continues to pursue other opportunities. No one wants to be the guy who only stayed at a job for a short time, but he had to accept the offer, and he also has to keep looking for something that's better suited to our needs. We continue to hope that the right thing comes along soon. 

I'm still doing some freelance stuff on the side, mostly editing, but also occasional research projects. The amount I work varies widely. In December, I did exactly one small project. So far in January, I haven't had a week when I worked fewer than 25 hours. Honestly, that's more hours than ideal. My life is structured around being a full-time parent, which means I should have plenty of time to be involved in every activity under the sun, and I am. There's no way to disengage from any of it, because I'm not just a regular volunteer anywhere, I'm on the board of this, or I'm coach or manager of that. I wouldn't want to give up any of it anyway. I love it, and while it is tiring sometimes, staying engaged is good for me. When life is "normal," I can balance all of these engagements with taking care of the family, all of Hope's appointments and needs, and working on the side. When things are as stressful as they've been the last few months, and especially right now, it's hard to work the number of hours I currently am. I'm really thankful for freelance opportunities, though. I can work when I can fit it in, and not have to miss anything else. And realistically, next month will be slower, and then I'll be frustrated not to have much work... while simultaneously enjoying the slightly slower schedule, because life keeps me busy enough already. 

Enough about family updates, though. Let's talk about Hope. You're here to find out how she's doing, and the answer is that she's been really struggling. Aside from the continuing, and extreme, self-harm, she has expressed for a long time that she often wishes she were dead. We've avoided the hospital only because what she's saying is passive. She's not saying she wants to, or plans to, kill herself. She's saying that she wishes she would die because her life is so painful that she doesn't want to have to keep living it. She has insisted, though, that she wouldn't actually try to kill herself, mostly because she's scared to die. With all of the safety measures we have in place, and with her insistence that she doesn't intend to make an attempt on her life, we've kept her at home. There have been frequent conversations about the hospital, and even a couple times where her psychiatrist said she felt most comfortable going that way but trusted that I'd know if it was time and let me make the decision. So what pushed us over the edge now?

Hope told us that she was terrified that she was going to kill herself. She doesn't want to but feels like it's inevitable. There are several factors at play. The voice has been urging suicide more frequently, and she says she doesn't know how to not do what the voice tells her; she often does what it says even if she doesn't want to. She can't explain why, but she feels powerless against it. She said she's resisted so far, but is afraid that she won't be able to for much longer. On top of that, she's been feeling less afraid of dying, and more indifferent about it. She doesn't always feel indifferent, though. She is at least sometimes connected enough to recognize that she's sometimes feeling indifferent, and sees that that indifference would make her more likely to do it. While fear of death has kept her safe in the past, the only thing that has stopped her recently is thinking about what it would do to the people who love her. Sometimes she's pretty disconnected from her emotions and rational thoughts, though, and that alone may not always stop her. * Here's where it gets a little more detailed, and you may want to go ahead and skip the rest of the paragraph if you're worried that it may trigger or upset you. * The most alarming thing is that she took a few steps toward carrying out a plan. She made a noose. She figured out where she could hang it. She put it there and tested whether or not it would hold her weight. (This was why her previous attempt failed.) She measured to make sure her feet wouldn't be able to touch the ground when she did it. Basically, she did everything she needed to do, stopping only before the actual act. There aren't words to express how all of that feels, and I'm not sure I'm ready to even try to get into it, so I'm just going to move on with facts here. Suffice it to say that this news is heartbreaking and terrifying. She still had the noose; she'd resisted using it so far, but kept it. 

Obviously, the detailed plans and even steps she carried out alarmed us. When she told us that this had been going on, she was sobbing and begging me to help her, because she was terrified. We went straight to the hospital. As you know if you've followed us for long, we've exhausted med options, and even tried ECT. Her case is severe, as very early onset schizophrenia tends to be, and she doesn't respond well to treatment. We're fortunate that a majority of her 14 hospital stays have been in the same hospital, and the staff knows her well. She's treated well there, and we don't have to go through the huge backlog of history to figure out what to do next. However, everyone agrees at this point that there's not much we can do beyond keeping her safe and hoping the break/change of pace helps her move into a better place, at least for a while. She has never been stable for long, and she may never be. Things will always get bad again. But if we can ride out the worst times, we can hope for periods of relative stability before we're at a crisis point again. Ultimately, her best support system is at home (at least she has that; it's sadly not true for everyone) and the best thing we can do for her is to keep her at home as much as possible. There are always hard conversations about whether or not we have to consider keeping her safe by using a longer-term hospital, but we always arrive at the decision that she would be beyond miserable like that and that we have to give her the quality of life she desires and deserves. You can protect your kids by never letting them do anything, but you also have to let them live and have experiences that make an enriched and fulfilled life. Her case is a really extreme version of the same struggle all parents go through -- we make decisions where her life is literally at stake if we choose wrong -- but like everyone else, we're doing the best we can. 

We leave this inpatient stay feeling happy to have her home, and also scared. I've been transparent before about my fear of losing her. Many of you know that Dad opens her door in the morning to spare me having to do so, because we feel fear/uneasiness every single morning until we see that she's okay. Many of you know the statistic that one in ten individuals with schizophrenia dies by suicide. Bringing her home today brought mixed feelings, as is often the case. There is a painful emptiness when she's not here, but it's hard to have to spend all day every day assessing how she looks and managing everything that comes with her illness, and it's hard to wonder all the time if you're making the right decision. Still, I'd choose her a million times over. I'd rather walk through every difficult moment with her than ever have to know a moment without her. 

As for how Hope is right now, it wasn't a great evening. She is usually giddy when she's discharged, but it's only a short time before everything else pushes that feeling away. She commented on the drive home that the world seems really overwhelming after she's been in the hospital. There are so many sights and sounds at once. She sometimes struggles to process it all anyway, and this is definitely true after coming from a stay in a place where everything is so quiet and uniform and under-stimulating. She was sad and quiet this evening, and if this is how she feels in the honeymoon period of being newly home, I expect she'll continue to struggle. It's not that we expected big changes, considering that all we did in the hospital was increase the dose of one med that we don't think is helping at all anyway, but we held out some hope that spending a little time there would somehow reset her perspective a little. 

If you're looking for specific prayer requests, or wondering how you can support her or hold space for her, here are some thoughts. One of her heaviest burdens is that her self-esteem is so low. It's so hard to be a teen girl in the best of circumstances, and when you add in that her rare and extreme illness makes her feel so broken and so different, and then pile on top of it that her auditory hallucinations tell her horrible insulting things about her all day long, it's just so much. Please pray that she somehow learns to see how precious and incredible she is, and help us to remember to focus on reminding her rather than feeling frustrated at the ways in which her illness makes things difficult. Please pray that we are able to properly assess safety concerns, and act appropriately to keep her safe. Please pray for provision, that a more suitable job/benefits situation comes along soon. Please pray for these exhausted, overwhelmed parents. Please pray for the little brother who endures so much. (She loves him more than anything, and told her hospital therapist that the hardest thing for her is knowing how much it all must hurt him. She says that she'd find it agonizing to see him do things like make cuts all over his body, or have to fear losing him, and she imagines he must feel that way as well. Honestly, it is hard for him. And it skyrockets anxiety issues for him, and makes him struggle in ways he shouldn't have to. But none of it is her fault, and she never asked to have to struggle this way either.) 

Lastly, I just want to thank all of our family and friends who continue to love her so perfectly. She expressed to me that she doesn't understand why she feels the way she does when she is fully aware that she has the absolute best support system in the world. She knows that so many people struggle alone, and while she sometimes feels alone, she does know that she is incredibly loved and that if she'd just reach out, there is always, always someone there for her. I wish I could express how deeply touched I am by every single word of encouragement and every kind gesture. My heart overflows with gratitude. 

Patience

"The strongest of all warriors are these two -- Time and Patience."          War and Peace, Leo Tolstoy

I've been getting a lot of questions about how treatments are going, and how Hope is doing. I don't have a clear answer, but I decided I might as well update with what I do have. Real life isn't always neat and tidy with easy answers, but you're welcome to wait with us in this moment of not knowing how things are going. 

Hope was discharged after her third treatment, and we've continued it outpatient. Today, she had number thirteen. We don't yet have a stopping point figured out. In my last post, I said that the average course of treatment is six to twelve, but I didn't really know what to expect. Now we know that she isn't responding quickly, and the doctor told us that with her symptoms we should expect closer to twenty for her. 

I know what you all want to know. But is it working for her? Is she getting better or not? That's the part where I can't give you a clear answer. For most of the month we've been doing this, we've been saying that no, it's not working. In the last few days, I've thought that she seems somewhat more energetic and maybe a little brighter overall. Much of the time, I think she looks the same, but there are patches of better mood. I can't say if it's starting to work, but I'm starting to think that it might be. It's been hard, honestly, to watch weeks go by without any relief for her, but we're still hopeful that she just needs a higher number of treatments and that ECT will still be successful.

The overall picture of the three weeks since discharge isn't a pretty one. There have been three episodes of pretty severe self harm with the most recent being five days ago. We've been very much on the verge of hospitalization again; her therapist and psychiatrist were in support of readmission after the last episode, and I said that I'd like to give these treatments and a new med (I'll write about that below) a little more of a chance before taking that route again. They both agreed to let me make the final decision, because we don't believe that she is currently suicidal, but we all know that another severe self harm episode will mean the hospital. Not only that, but it may mean a PRTF instead of an acute stay, which means she'd be there longer. We're trying so hard to avoid that. 

She's physically tolerating treatments very well. Here are all of the categories you might be wondering about:

- Pain -  She had a headache and mild muscle aches after the first treatment, but has had no pain at all after any of the others. Being so young and healthy, her body is taking it all in stride. The only uncomfortable parts of the process are the injection of the numbing agent they give before they start her IV, and the burn of the anesthesia as it goes in through her IV. Both of those are brief and manageable. 

- Anesthesia - She'd never had anesthesia before this, but it has gone well. One time she wouldn't stop breathing, and they had to give additional meds. After that, they just increased the amount she's getting, because she'd probably begun to build up a bit of tolerance. She's on the longer side as far as how long it takes her to wake up and be functional, but she's been consistent. 

- ECT - Her brain is producing nice seizures that look just like they want; only once did she have one that didn't last the minimum twenty seconds. In that case, they just do another one right then and there. 

- Memory - We are seeing some memory impairment. Hope already has a poor memory, with schizophrenia's cognitive effects being similar to dementia. We're comparing to her baseline, though, not a typical 16 year old. She does a memory test once a week so they can compare, and we keep an eye on how she's doing functionally. She is disoriented when she wakes after treatments, as expected, and then over the course of the next hour or two, that mostly clears. We are seeing some incidents of her not remembering conversations, places we've been, things we've done in the last few weeks. For example, she's been participating in a photography workshop, and she has taken pictures of things that she can't remembers seeing or doing, and only knows for sure that she did because there's photographic evidence. None of this is concerning enough to stop treatments, and she should return to her baseline within a few months. She says it's just annoying, not distressing, to be unable to recall things. 

We've done one more thing to try to help Hope stay safe. I know I've said before that we've pretty much exhausted med options, but we've actually started a new med. This one isn't a psych med, but it may help her. Naltrexone is a medication that is used in drug and alcohol addiction, but there are some studies and a fair amount of anecdotal evidence that it can help with self harm. To strip it down to the "for Dummies" version, self harm causes your brain to reward you with happy chemicals. This drug stops your brain from responding that way. Hopefully, it will decrease her desire to cut. If she does cut, it is supposed to take away the feeling she's used to getting from it, therefore making it less desirable to do it again. Naltrexone will not address any other problems, make her feel better or happier, or decrease any of her symptoms. It's job is simply to keep her physically safer. She only started taking it a week ago, and since we eased her onto it, today is actually the first day she's had a full dose. We don't know yet if it will help, but we're hopeful.

I guess that's where we are with everything right now. We don't know if the ECT will make her feel happier, but we hope so. We don't know if the new med will make her safer, but we hope so. All we can do is be patient, and keep on hoping for a positive outcome. 

We love all of you, hope you're having a great summer, and hope your holiday weekend is a good one!

A New Hope (Any Star Wars fans out there?)

"Take calculated risks. That is quite different from being rash."          General George Patton


Tomorrow brings a new possibility for our Hope. We've spent the last several years watching med after med fail to improve things for her. She simply doesn't respond well. We haven't tried every med that exists, but have sampled some from each class of antipsychotics, mood stabilizers, and antidepressants. Her failure to respond to any of them means that she's not likely to respond to others in the same class. We've arrived at the point where there is unanimous agreement from her outpatient psychiatrist, her current inpatient psychiatrist (who is the adolescent department head at that hospital), a hospital chief of psychiatry, and the team of psychiatrists from the brain stimulation service. Our best bet for response and improvement for Hope is electroconvulsive therapy. I've tried to answer what I thought might be your questions below.

Whaaaat?
Hearing that we're doing ECT may make you nervous. That's okay. I'm going to ask that all who love her take a few moments to research it, because I think it'll put your mind at ease. The horror movie image you might have of a person strapped to a table, convulsing in a way that looks terrifying is outdated. Yes, it used to look like that. Even then, it was sometimes the best option they had for people, and could be very effective. The way it's done now is under general anesthesia. They are still using electric current to induce a seizure, but because the body is paralyzed, you don't see the convulsions of the past. These convulsions often made people feel like they'd been hit by a truck, because their muscles clenched so aggressively that they were very sore afterward, and there were even instances of bones broken from it. None of this will be Hope's experience. It's actually considered a low risk procedure, so much so that it's sometimes used during pregnancy when meds could harm the baby or in older adults who can't tolerate med side effects. Hope has been evaluated not only by multiple psychiatrists to determine that this is be best course of action for her, but has also had physical tests done to ensure that she can handle it.

Why?
ECT is used most often for depression. It is often more effective than meds, and response is faster. It can sort of reset the brain when it is stuck in a bad funk. (Yeah, this is apparently my oh-so-technical medical knowledge.) It can also be used in treatment resistant schizophrenia. It won't change negative or cognitive symptoms, but can have an effect on positive symptoms, such as hallucinations and delusions. We do not expect it to fully eliminate these things, but we do hope for a decrease. At the moment, these things are not the biggest threat to Hope's safety. The severe depression, self harm, and suicidal ideation are her biggest threats. It's not possible to untangle all of this from her schizophrenia, because her overall situation contributes to her hopelessness and depression, and the voice that says such awful things to her contributes to her hopelessness and depression. So yeah, they're all tangled together. But the ECT can help. And, to be honest, nothing else is expected to right now.

When?
We start tomorrow morning. Treatment is usually six to twelve sessions. It'll be three days a week for probably two to four weeks.

How does this work?
Here's what it will look like, to the best of my understanding. Hope will be transported from the hospital where she is to the hospital that does ECT. I will meet her there. They'll do a quick physical exam, start an IV, etc. She'll be taken into the room, where she'll only be for about fifteen minutes. She'll be anesthetized, and they'll put a blood pressure cuff on one ankle, to prevent the sedative from entering that foot. That's done so that when she's seizing, the one foot actually isn't paralyzed and they have another way to watch the seizure. Her brain will be stimulated for a total of six seconds, but in short pulses. They'll be watching EEG brain activity and also the one foot to monitor the seizure. The seizure needs to last at least twenty seconds to be effective, and they're usually thirty seconds to a little over a minute. If her brain happened to "get stuck" and kept seizing, they'd give a med to stop it at 100 seconds. Over the next 30 - 45 minutes, she'll wake up and become reoriented. She will likely be confused at first, but that's not a shock considering that she's just had a seizure and just been anesthetized. There may be some lingering confusion and/or memory loss, but these things will resolve. The main things we expect are manageable -- headache, sore jaw from clenching, sore muscles (not from the seizing like in the old days, but actually from the muscle relaxer that causes a chemical dump in the muscles.) They'll take her back to her hospital, allow her some extra rest, and then have her go about the rest of her day as she's able.

When can she come home?
She does not have to be inpatient for the whole course. We will start inpatient, and hopefully finish as outpatient. Right now, the earliest possibility is next Thursday. The inpatient doctor wants to watch her through three treatments, so Friday, Monday, Wednesday, and if she's doing pretty well, he could discharge her on Thursday. That also happens to be her birthday. I'd love to get her home then, and am even hoping he might consider doing a late discharge on Wednesday evening so that she can wake up here on her birthday. If not, the social worker already said we'd plan to put her on the schedule as the earliest discharge on Thursday. Of course none of this is certain, but that is our earliest possibility, because we know he wants to watch her through at least three treatments.

What are the risks?
We expect some headaches and possible muscle aches. We expect confusion and memory loss. That is usually fully resolved within two weeks, although there is a small possibility of it lingering for up to about six months. There is a chance of seizures between treatments, and this is slightly increased for Hope, because her clozaril can induce seizures. The main risks are just the ones that come with general anesthesia. She has never been anesthetized, so we don't know how she'll react, but after the first time, we'll have a better understanding. These risks are very small, and present in any procedure that requires anesthesia.

Will it work?
There's a 60 - 70% chance that there will be noticeable improvement. Those are pretty good odds!

But isn't she just a baby?
Yes. She is. She's also very sick. I'm not going to pretend that this is just a mundane thing they do to kids all the time. Hope's case, in all ways, is incredibly rare and unique, though. The doctor from the brain stimulation team said she hasn't seen it done on a fifteen year old, but has seen some sixteen year olds. The head of adolescent psych at the largest psych unit in the city says that unit has done it twice in the decade and a half he's been there, both times on kids older than Hope. It will be a first for most of the staff at that hospital, but the doctor from the brain stimulation team came into their team meeting and discussed it with them, so everyone does know how to take care of her and what to watch for. When we started clozaril (when she was just thirteen), a pharmacist came and did the same thing, because that was also not known to most staff on the adolescent unit. So yeah, it's not common. But there are studies on it, there have been official guidelines on how to use it in adolescents since 2004, and there's a lot of experience in using it on adults. Hope is young, but she's 5'5" and 130. Hope is young, but she's physically very healthy. Hope is young, but she has a long history of severe illness and med resistance. ECT is actually so low risk and can be so life-changing -- literally life-saving -- that many doctors think it should be considered more often than it is.

Is Hope okay with this?
She is. We wouldn't consider it if she had any hesitation. Actually, they wouldn't do it against her will anyway. Legally, we have to consent, but they also require her assent. She is somewhat nervous about it, as you'd expect with any procedure, but she's hopeful. She knows that meds aren't giving much hope at this point, and says that if this might make her less miserable, it is absolutely worth trying. She knows that her doctor uncle thinks it's a good idea, and she knows that her psychiatrist (who is typically very conservative) thinks it's a good idea. No one in the medical field that we've talked to have had any qualms at all. It's just the regular people who don't understand it and think of it's decades-old past who seem worried.

What we need from all of you is to keep Hope in your thoughts and prayers. It's safe, but will still have some physical side effects, and will sometimes be painful. (I mean, really, who ever wants to get an IV? Even that, which will be done with each treatment, is enough to cause some anxiety.) What we don't need from friends and family right now is doubt, stories about things you've heard might go wrong, pleas to change our minds, etc. We don't anticipate that level of pushback, but I'd be lying if I said I wasn't worried what other people are going to think or say. We've done the research. We've gotten much more than second opinions, and we're comfortable moving forward. There are risks, but if we're being frank here, the risk of her taking her own life at this point is much higher than the risk of ECT harming her. Please keep our baby in your prayers and thoughts, especially in the early morning hours of Monday, Wednesday, and Friday in the coming weeks. Maybe also send up a prayer for the nervous parents, and even an extra little one for the not-a-morning-person mama who will need leave home at 5:15 some mornings. ;) We're all a little nervous about tomorrow morning, as we would be with any procedure, but I think that once we've gotten that first one out of the way, it'll be a lower-anxiety experience.

I'll do my best to post a quick update here tomorrow to let you all know how it went. Love and HOPE to all.

In Our Shoes

"By the light of the moon, she rubs her eyes, sits down on the bed and starts to cry. And there's something less about her. And I don't know what I'm supposed to do, so I sit down and I cry too, but don't let her see."          Her Diamonds, Rob Thomas


Let me walk you through the last couple days. *Self harm is discussed below, so if this may be upsetting or triggering to you, please skip this post.* Some background info is that Hope began cutting about six weeks ago. Cutting itself isn't a reason for hospitalization; it's a very poor coping skill, but not considered life threatening unless the person is also suicidal. Hope was in the hospital for a few days last month because she was suicidal, but she seemed to level out, and they felt safe enough to let her come home. She has continued to cut, though we thought it was getting better. It wasn't. Read on to see where we are now. I'll take you through the last two days, starting with Monday afternoon. I'm really stretching myself here, because I'm going to walk you through the facts (plain font) and also my thoughts and emotions (italicized) as we walk through a crisis.


It's Monday afternoon. We're walking out of the therapist's office. Hope told him that she's been cutting places on her body we can't see, and that she has the blade from a pencil sharpener hidden somewhere. She agrees to give me the blade, to show me the places she's cut so I can make sure nothing looks infected or needs attention, and we again go over plans for how to deal with the desire to cut. As we get to the car, I ask her to show me her wounds. She lifts her shirt...
Oh, nonono. Don't react, mama. Don't react. She can't handle her own pain, she doesn't need to feel responsible for yours. Take a breath. You can do this. If there is still air left in the world, find a way to get some into your lungs.

"Okay," I say. "We need to go back in." We walk into the therapist's office and ask to talk to him again. She's sobbing. She lifts her shirt and shows him what I've just seen. Hundreds of cuts. Literally hundreds. They start just below her bra and end somewhere past the waistband of her low-rise shorts. Most of them are an inch or two in length, and organized in rows. The ones on the sides of her hips are longer and deeper. And then, worst of all, there are words.
Oh, my sweet girl. My heart. How? How is there such pain inside that you could cover your body in these wounds? Words... cut into skin... cutting into my heart... "Kill Me." "I Hate Myself." Baby girl, how? How do you live with pain this deep, and how do you hide it so well? How will I ever close my eyes again without seeing this image? Wait... are you kidding me? How am I thinking of myself, of my pain, when she is hurting this way. Breathe. Focus.

We're driving to the hospital. Therapist and I agree that's the only move we can make from here. Hope stares out the window. I reach over and pat her leg or rub her arm occasionally, but she doesn't speak. I don't trouble her with either inane chatter or deep conversation. I know she doesn't want either right now, and I'm thankful that I don't have to try to make my voice sound steady.
Don't let her see you cry. She can't bear feeling like she hurt you on top of the load she's already carrying. Thank goodness for sunglasses. Thank goodness she's tuned out enough to not notice when I reach up to wipe tears away before they slide out of my sunglass fortress. I must keep my body still and stoic; the thousands of emotions breaking me apart from the inside will just have to infuse these tears and slide quietly out. It's all I can afford right now. 

We check in to the ER at the psychiatric hospital. I give an overview of the problem, fill out some papers, and sit in the waiting room. Meanwhile, they've taken her from me. They'll search her, take her clothes, put her into scrubs, and put her into a locked, secure waiting area.
Right now they're making her take her clothes off. Someone will stare at her and write down every mark on her body. I hate this. I mean, I get it. They have to be sure she doesn't have anything she could use to harm herself or anyone else, and they have to document any injuries she had when she got to the hospital. She's been through this many times, and accepts it as part of the process. I know she's feeling ashamed this time, though. The cutting makes her feel deep shame, and right now, strangers are staring at her wounded body. 

The nurse takes me to a room to get a more complete report of what's going on. I'm thankful that she's someone we know. Repeated visits have made us familiar with some of the staff. Hope's sweetness (it shines through her no matter the situation) and my habit of talking to everyone I see (I do it even when I'm hurting, because I feel like it's my job to make sure I use every moment to spread kindness because you never know how someone's day has been) has endeared us to the staff, and at least the ones we know are good to us. I'm so thankful for those little things. The nurse, "S," has also spoken to Hope, and I'm glad she had a familiar face on her side of things.

Now that we've both spoken to a nurse, they let me join Hope in the locked part of the building. They pull her from the small waiting room where she's been sitting with a dozen other kids and a couple of psych techs. There are some chairs in the hall outside the room, and that's where they usually put parents when they come in, but right now there is no one in one of the tiny day rooms on the hall, and our nurse let us sit in there instead.
Thank you, S. I'm glad you were here today. The sea is stormy and the night is dark, and I'm being tossed around, unable to get my bearings. I needed a familiar face to ground me.

We wait. Hospital time passes excruciatingly slowly. There's no clock in the room, just three chairs that fold out into beds when necessary, and just enough room for all three to be folded out at once. Hope doesn't have much to say, so mostly we just sit. Occasionally, someone familiar breaks up our endless waiting. A nurse we know brings water for me and apple juice for Hope, and spends fifteen minutes or so catching up. Later, psych tech "E" brings a snack basket around. She stops in our room before continuing on to where the other kids are next door. Tonight, the snack basket choices are peanut butter crackers, small bags of chips, half turkey sandwiches, and juice. E says "I brought you an apple," and reaches into her pocket, retrieving a shiny red delicious, wrapped in plastic. Another small, kind gesture for the girl everyone loves. Later, a psych tech strolling down the hall stops in the doorway and bellows "Hoooope!" She smiles, bounces out of her chair and over to the doorway. "Hey, Mr. C."
How nice to see a real smile for a moment. But how messed up is our life that we're familiar to this many people at the psych hospital? She greets this man like you might greet a favorite teacher. How is this our life?

It's late Monday evening. It's been four hours. Finally, a doctor. She's not someone we know, but she is kind and thorough. She says that they don't admit for cutting, but that she's very worried about the rapid escalation and the voiced desire to be dead, and that Hope does need to stay.
That's disappointing. That's a relief. Did I really just have those two thoughts simultaneously? I hate when she's away, and I know she hates being in the hospital, but at least they can keep her safe while we figure out what to do. What the hell are we going to do?

I have to go. The decision has been made, and it's not visiting hours, so it's time for me to leave. Without her. While they've decided to keep her, they don't actually have any beds available on the unit, so she'll wait in observation. Sort of. Even the observation unit is full right now, so for now she'll be on the ER side. The observation unit is brightly painted, carpeted, has a chalkboard wall, a tv, board games, water and ice that the kids can get themselves, board games, art supplies, etc. The ER observation area is a narrow room with chairs lining each side, a tv at one end, and the internal wall is mostly window, so you can watch staff walk by but not much else. Two techs sit at the end of the room, and around a dozen kids sit in the chairs. (Regular chairs. The ones in observation are the kind that turn into beds, so they're pretty comfy. Not here in the ER.) They have a game cabinet as well, but there are just a few games with missing pieces, and a single new-and-still-intact game of Uno. The kids who don't behave well stay in this area for as long as they're waiting. Hope is appropriate for the other observation unit, and is put on the list for it, but it could be a couple days before she even moves over there, let alone get into the actual unit upstairs. At least for tonight, she's in the ER. There are a few small rooms on that hall that have chairs that fold into beds. Some kids will sleep there, but there are currently more kids than space, so some will sleep on mattresses on the floor in the hallway. They turn off the lights in the little rooms, but they have to leave hallway lights on. If she's stuck on a hallway mattress, there will be lights and movement all night long.
How is this my life? How is it that I'm driving away, leaving my child in a psych hospital with cuts all over her body, hoping she'll make it through this battle alive, and hoping that she'll at least not sleep on a floor under fluorescent lights tonight? This is not what I dreamed her life would be.

I'm driving home. Finally, I cry. I weep from the depths of my soul, for her pain, for mine, for all who love her and hurt along with her.
Okay, mama. Pity party over. You're almost home, and baby boy needs you. Find a reassuring smile to give him. We'll process emotions later. We'll remind him later that it's okay to cry, that it's okay to feel your feelings, that of course we're sad that Hope is in the hospital. It's okay to let him see that you have feelings, but not in this moment. When you hit the door, you've got to have a reassuring smile for him.

Tuesday morning. Before my eyes are open, it hits me like a punch in the gut. Hope is in the hospital again. She wants to die. The image of her wounded body hits me again.
This is too much. I can't bear it. I know, I know, it's not about me. It's crappy of my to think of my feelings, but I'm so tired. I can't do this. Not again. 

I keep the day looking as normal as possible, especially for the little guy. Psych hospitalization is not like a hospital stay for any physical reason. I can't spend my day sitting by her side. I can visit for an hour and a half this evening. A social worker will call me at some point today to let me know how today's evaluation with the doctor goes, but there's not much else I can do on my end. Some days there are phone calls with the hospital, phone calls to the insurance company, meetings at the hospital, but today there is just surviving until I can see her. I make a dinner that the guys can put in the oven later, because visiting and the commute on both sides will take me out for most of the evening. I go through the motions of cooking, cleaning, and pretending to be a functional human.
I can't move, because I'm paralyzed by the weight of the entire world. I can't be still, because I'm churning with all the emotions there ever were. I am pain and numbness. Is this what she feels like? No, I can't even imagine what she feels like. At my very worst, I've never experienced what she lives with. I ache with her pain. 

It's Tuesday evening. Finally, I see her. She cries through half of the visit. She tells me what she thought of the doctor she saw that day, what she ate at meal times, what type of group therapy they did that afternoon. I tell her what I talked about when I spoke to the social worker, what med changes the doctor suggested, and that I agreed with those proposed changes. We exchange small talk when she feels like talking, and I hold her when she can only cry.
My sweet girl. I'm so sorry you're hurting. I know you want to go home. I want to take you home. They won't discharge you right now, but even if they would, I'd be so scared to take you. I don't know how to keep you safe. I'm so, so scared about how I'll keep you safe. 

"It's Mental Health Awareness Month, you know. I'm thinking I should update my blog at least once this month. Are you okay with me writing about where you are right now, and why?" She says that's okay with her. I ask if there's anything she would like to tell anyone who reads my blog. She thinks and finally says that the only thing she wishes is that people understood how it feels to be her. "But," she practically whispers, "no one can understand that."
I wish I could, my baby. I wish I could walk in your shoes, so you could have mine. And if you can't have mine, I wish I could at least spend a few moments in yours so that I could understand. Maybe then you wouldn't feel so alone. 

Now it is Wednesday. The day has passed much like yesterday. The days blur together in these times. There is hospital and not hospital. I fake it for my girl's sake at the hospital, and I fake it for my boy's sake at home. But, man, does my car see the worst of me. I sob, I scream, I rage.

We don't know what to do. We're making a couple small changes to Hope's meds, but they're not really expected to fix things. There are no med changes at this point that will fix what's going on. And she doesn't just need to work through something -- a trauma or tragedy or event -- and then she'll be able to move on. And she doesn't just need to learn some coping skills. She could teach a class on them. She knows a ton of other things she could or should do when she feels like cutting or feels suicidal, but in the moment she can't do any of them. There's nothing they can do that's going to make her significantly better or safer in the coming days or weeks. We believe that eventually she'll begin to feel better. Whatever we do, she'll probably start to come out of this eventually. I don't have anything to base that belief on, really, except that she hasn't always felt that way, and surely she won't always, right? Some of her symptoms are constant, but every major crisis we've faced has eventually passed. So I guess I hope that if nothing else, keeping her safe in the hospital while some amount of time passes will get her closer to being on the other side of this.

We're scared. We're very, very scared. I wish I had better news, or some positive, encouraging words. Not today, friends. Today, I'm just a terrified mama, desperately hoping to hold on to my baby girl.
Hold on, my precious one. Please stay. I know it hurts, but I promise we'll be right here beside you. I'm so afraid that you're slipping away, and I don't know how to keep you safe. I know it's not easy. I know it's not fair. I won't tell you lies, and I won't promise that it will ever be easy for you, but there is still so much beauty in living. There is so much beauty in you. How can I make you understand either of those truths? I need you. The world needs you. Please stay.

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!