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.