Rejoice in hope, be patient in tribulation, be constant in prayer. Romans 12:12 (ESV)
Our life these days never ceases to surprise us. The one thing we know is to always expect the unexpected, and somehow, we're still caught off guard. Every once in a while, though, that's not a bad thing.
Early last week, and after the fourth increase in her antipsychotic, Hope stopped hallucinating. If you're at all familiar with our story, your first question is probably how we know that she's telling the truth this time, right? Well, she went from being her usual, coolly removed self to being a sobbing, emotional wreck. In the past, when she's told us that she's not hearing the voice, she's said it casually. This time, she completely melted down. She (who shows emotion very infrequently these days) cried for three days. She panicked. She said she's not ready for the voice to be gone, and that she doesn't know what to do without it. We were worried that if meds ever did start to work for her, we wouldn't know how to believe that she's telling the truth, but boy, was it clear! It has now been 9 days since her last auditory hallucination, and 8 days since her last visual hallucination. She also reports that she no longer feels homicidal.
I can't even believe that I am writing these words, after such a long battle to get to this point, but our girl appears to be psychosis free for the first time in almost two years. I still can't quite grasp that. (Side note: When I say psychosis-free, I guess I really mean hallucination free. Delusions are also psychosis, and we don't actually know where she is right now, as far as grasp on reality, or whether or not she holds appropriate beliefs about the world in general. It hasn't been the primary focus of our efforts, as it simply isn't the most important right now.)
Once this change happened, we had to start reevaluating what that means for her current placement. Residential treatment was recommended because her providers believed that outpatient wasn't a high enough level of care with the symptoms she had. With a change in those symptoms, we had to rethink that. Residential is essential in some cases, but should be used with caution. The kids there have severe behavioral concerns. Many have histories of violence, sexual acting out, drug and/or alcohol use, etc. When you're looking at placement of a kid like Hope, who doesn't have any of the above, you really have to carefully weigh the positives against the potential harm. We had arrived at the point where pretty much all of the providers in her world believed that it was necessary. However, if she is, in fact, hallucination free, is it still necessary? After talking it out with her team at the hospital, and her outpatient team, we determined that she didn't need to be thrown into that situation at this point. We would risk her being either traumatized or hardened by it, neither of which are good for her. We would've done it as a last resort, if she were too dangerous to be anywhere else, but she really does seem to be responding to this med, and therefore not too dangerous to be at home.
On Sunday, the day before her 14th birthday, we brought our Hope home. She was only away for two weeks, which we've been through before, but this time seemed so much longer. It wasn't just a two week hospitalization; it has been a two month process. She was inpatient for two weeks, then at home but with us working hard on figuring out residential placement for a month, then inpatient again for another two weeks. It has been two months since we were able to just be, and since we were last able to picture our summer happening as a family of four.
Not to negate all of the happiness above, but life is not all butterflies and sunshine. Our child still has a very serious illness. We rejoice that at least in this moment, she is med stable, but what exactly does that mean? Antipsychotics control psychosis, which is just one component of schizophrenia. There are many other challenges and deficits that remain. Even if Hope does continue to show response to meds, we are faced with at least some of the following symptoms of schizophrenia: executive functioning deficits; deficits in working memory, and organizing thoughts; impaired motor skills; emotional flatness or lack of expressiveness; an inability to start or follow through with activities; speech that is brief and lacks content; a lack of pleasure or interest in life; difficulties with social cues and relationships; neglect of self care... the list goes on and on, and the ones I listed are just the ones we've already encountered in Hope.
Honestly, even our best-case-scenario for Hope means that life will never be easy. We want to aim high, and help her achieve all that she can, but we know that our goals for her will be different than what we dreamed of before she was sick. All of our goals now are for her to achieve the most normal life she can, knowing that it still won't be "normal." Most individuals with schizophrenia require some form of daily support. It's not realistic to believe that she'll be able to completely manage her own life, but we can do our best to give her all the skills and support she will need to eventually live independently -- with support to manage things, but maybe at least in her own place. Less than 15% of people with schizophrenia are employed. We can give her all of the resources and training necessary to support her working at least part time, though. We know that working provides a person with a sense of worth, connects him or her to the community, and provides life with a sense of purpose. Some of the things that we (her family and her therapist) will work very hard on are: teaching life and self-care skills, so that she has the best chance of some level of independence; educating about the need for medication compliance, so that we lessen the risk of noncompliance in the future, which is one of our biggest long-term worries; teaching social skills, providing ample opportunities to practice these skills, and realistically, forcing interaction, because she pretty much always chooses not to interact when she has an option; educating about the pitfalls of drug and/or alcohol abuse, which is obviously always a bad thing, but is especially common in those with mental illness; watching for signs of increased suicide risk, as different studies show that 20 - 40% of people with schizophrenia attempt suicide, and around 10% succeed (this is especially scary for us, as Hope has already attempted once.) Life will never be easy for Hope, and this means that life will never be easy for us. Sometimes, I'm exhausted by that thought. Then I remind myself that if the only options are working hard every day to support her, or living life without her, it's really a very easy choice.
As far as where we are at this moment, I suppose we're just trying to get our bearings. This is the first time we've seen Hope hallucination-free in almost two years. She hasn't just gone back to how she was two years ago, though, because her illness is still so all-encompassing. We don't know how long she'll be stable, what will happen when the psychosis inevitably returns (will she be honest and let us know right away? will another quick tweak get it back under control? could she become very dangerous before we have any idea that it's happening?), and how we handle it when it does. We're trying to put together treatment plans for many other things that we just couldn't focus on when her psychosis was the top priority for so long. We're adjusting to having her back at home, which is what we wanted, but at the same time, is not always easy.
At this moment in time, we have a child who is very, very depressed. She is grieving the loss of the voice that was her companion for a long time. While we understand that this voice was a result of a brain malfunction, she experienced it as a separate person, and was really the most important person in her life. Now that it's gone, Hope doesn't know what to do with herself. Her grief has turned from frequent crying to a deep, quiet depression. We understand that she must go through the same grief process that accompanies any loss. Meanwhile, we're watching very carefully for med compliance (she has stated that she knows she could fix it if she'd just stop taking the meds, and she has been noncompliant in the past by both checking meds and by purging after taking them) and watching for any signs that she may harm herself (again, she's tried it in the past, and she is incredibly depressed and hopeless at the moment.) She moves very little, speaks very little, and when pushed to do either, she's not very pleasant. She's not engaging much right now, but occasionally something will distract her enough to get her briefly out of her shell. We're thankful for those times, and hope that they will become more and more frequent as she works through her grief.
We would appreciate prayers for: continued stability and further healing; our sweet boy, who is still struggling with his anxiety; our stamina, as this race seems endless, and sometimes we are so tired; financial provision, as this has been such an expensive year already; a peaceful home, as life with Hope can be stressful sometimes, and we didn't expect her home so soon, and while we're happy for that, it is an unexpected adjustment for her parents and sibling. Most of all, we want to thank you all for your faithful thoughts and prayers. While there is a long road ahead, and our days are still hard, we know that what we've just experienced is a huge, huge deal, and there just aren't enough words to thank all of you who are with us on this ride. Much love to you all!
