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.