Carrying On

"The story of my life: I take her home, I drive all night to keep her warm, and time is frozen." One Direction, Story of My Life

Man, would my kids hate that I used a One Direction quote; and one from a love song, at that. That one line just fits, though. They'll forgive me. 

Hope is home again. She was discharged on Monday, which was our best-case scenario. Med changes always require at least 4 - 5 days of observation, to see what effect the new med or new dose will have. When she finally transferred to a psych facility late Tuesday night, we knew that she'd be there through the weekend, at the very best. The fact that she's home now means that it was fairly easy to stabilize her this time. We are so, so thankful for the prayers that we know were covering her, and all of us.

So, let's start with good news. I've talked about the possibility of longer-term hospitalization, and was worried that this situation would lead to pressure to move that direction. Thankfully, that's not the case at this point. Three crisis hospitalizations in seven months is a lot, and in some cases that would warrant longer placement. In Hope's current situation, though, it doesn't necessarily mean that she's in a really bad place right now. She has actually been trending in the right direction, and making progress overall. It seems that she just needed a medication adjustment. Her previous dose of her antipsychotic was just not holding against her symptoms, and needed to be increased. She is responding well to that increase so far, and hopefully that will get us back on track. As long as we are able to keep her safe and stable, the plan is for her to be at home. She wants to be here, and we all believe that it is what's best for her. 

The not-so-great news is that she has more symptoms than we knew. We were well aware of the presence of psychosis. We knew that there were thoughts and impulses that are not in line with reality, or with her own personality. However, she has always denied having additional psychotic symptoms. As I mentioned in my last update, she finally admitted having a recurrent auditory hallucination. In addition, she has told of several more since my last update. There is at least one recurrent visual hallucination, as well as at least one more recurrent voice. There have also been at least a few isolated incidents, and at least two other recurrent voices that she used to hear, but no longer does. It feels like such a blow to hear of these additional symptoms, and to be honest, I'm struggling quite a bit right now. The more I learn about the depth of her illness, the harder it is to imagine a positive outcome for her. What I'm hearing from her care team, though, is that this isn't really different than where we already were with her. It's psychosis. It's just additional manifestations of something we already knew about. It is apparently common to see multiple manifestations. In fact, her therapist went so far as to say that she always wondered a little if she was holding something back, because she was a little surprised that she didn't have any hallucinations, given the level of her other symptoms. So, as scary and bizarre as it seems when you hear the specifics of it, she isn't necessarily significantly worse off than we already thought. We can't know how her illness will progress, especially because she is still very young for any of this. However, she is not in the territory of schizophrenia or schizoaffective disorder, or any of those things that my mind jumped to. That's what I'm hearing from the professionals, anyway. As a parent, it's really hard not to worry about things that sound so alarming.

I am, once again, humbled by this amazing girl of mine. I am so proud of the strength it takes for her to be honest with us about all of the things that are going on inside her. We are completely at her mercy, because we have no way of knowing what's going on in her mind, of course. We know only what she chooses to tell us. Honestly, she doesn't want to tell us anything. She's doing what is right, even though it doesn't feel right to her, based only on her trust in us. She is an amazing kid, and so, so strong. The doctor in her first hospitalization told us that he was truly amazed that despite the level of disturbance she's living with, she has never tried to hurt anyone, or acted out in any way. He said then that what we're looking at is "just a plain ol' good kid" with a serious illness. The doctor said the same thing at discharge this time, as did the social worker assigned to her case. Independently from each other, in separate meetings, they told me that she's a great kid. I've been hearing that her whole life, but it never gets old, especially right now. Obviously, most kids they see, and most kids with mental illness, have behavioral concerns. Those kids are no less amazing/beautiful/strong/smart/worthy than mine; all are broken, and all are struggling with things that no child should ever have to. However, it is still soothing to my heart to hear people praise Hope for being so helpful, respectful, hardworking, intelligent, well-spoken, and communicative. She has been dealt an incredibly tough hand, and she plays it with such strength and grace. I am amazed by her every day.

Where we are right now is pretty much where we were before this hospitalization. More worried, thanks to the additional symptoms? Sure. More worn down from the never-ending roller coaster that is life with a serious mental illness? Absolutely. Feeling battered and broken, and scrambling to regain footing? Unfortunately, yes. Essentially, though, we're where we already were. We manage her symptoms, and do our best to keep her stable. She takes meds. She sees her therapist (which we've stepped up in frequency, for now), and her psychiatrist. We do our best to be very watchful of her moods/actions/interactions/body language/activity level/sleep patterns/etc., while at the same time trying not to over-scrutinize every single thing she does or says, or keep her from being able to have and express a normal range of emotions. Post-hospitalization, we go back to our "regular" life, and do the best we can to be a normal family, living in abnormal circumstances. It's almost summer, and there is life to be lived, and fun to be had. Medical bills have probably ruled out a summer vacation, but there is sun and water, friends and family, amusement park season passes, and Hope has a birthday coming up. It is our job to give our children the best childhood we can, so we march on. We are carried by your prayers, held up by your kind words and support, and always, always grateful for your love.