And Another Thing

Hope has had some stomach issues since coming home. Almost every time she eats, she goes straight to the bathroom for a while. She says her stomach seems to be really sensitive, and hurts fairly often, especially after eating. Side effects of all types are possible with new meds, and most pass within a few weeks, so we figured that as long as it's bearable, we'll wait it out for a while. 

A few days ago, Dad heard her throwing up. He said something sympathetic about her stomach bothering her again, and she denied it. He said that he could hear her throwing up, and she insisted that she wasn't. That's when it clicked that we had been overlooking a problem right under our noses. 

I didn't give Hope a chance to deny it. I just said to her, "Tell me about the throwing up." She looked away, and simply said, "I'm sorry." She says it started partway through her latest hospital stay. According to her, it isn't that she's unhappy with her body, but she was concerned that she soon could be. The antipsychotic she's currently taking, and the one she was on for about six weeks before switching, cause weight gain. It happens in a pretty large number of people, and it can be a significant amount of weight. (Around 40% of people gain more than 7% of their starting body weight, often very quickly. About 7% of people will gain more than 15% of their body weight.) It's the biggest downside to these meds, as it can lead to other health problems. It's all a matter of risks vs benefits, though, and she is definitely in a situation where it's worth it to take the chance. She knows of this side effect, and has been counseled about healthy diet, staying active, etc. It seems that, rather than follow that advice, she came up with her own way of controlling it.

I can't believe that we managed to overlook this. She's a twelve year old girl with a psychiatric illness. She just came from a place where she was with other adolescent girls with psychiatric illnesses, which is exactly the population where eating disorders live. If she hadn't already thought of purging, she absolutely would have come across it there. She came home running to the bathroom after every meal, and I believed her when she complained that her stomach had been bothering her. I feel like we should have caught it right away. I'm trying to give myself some grace, though, and just focus on the good. We caught it just four days after she got home, and within a couple weeks of the onset. It wasn't long enough to cause any physical damage, and hopefully wasn't long enough to become really ingrained in her. 

For now, we're preventing it with supervision. She is no longer allowed to close the bathroom door -- it has to be left open enough for us to hear that she's not purging. I didn't want to take that from her, because it feels like a violation of privacy, but that's where we are right now. It's necessary, not only from the standpoint of it being unhealthy to throw up her food, but also because she takes meds. We need to know that her body is receiving all of the medication she's prescribed. 

I feel okay about where we are right now, I guess. We talked again about recognizing when she's hungry (because the meds often make her think she is), how to choose healthy snacks when she needs to snack, and how important it is to stay active, even on meds that decrease her overall energy level. She has been showing effort in eating healthfully -- asking my opinion about snack choices, and asking about portions at meals. She said that she plans to start running again, like back in the spring, when she was training for a 5k. It seems like she's trying to learn how to handle this all in an appropriate way, and I'm proud of her for that. She's never really had to worry about this stuff before. We've talked about health and nutrition, of course, but she seems to have a naturally light appetite and naturally high metabolism. Having to fight for what has always come natural to her is just another thing that this illness has thrown at her, and I'm proud that she's showing effort in managing it.

For those of you who are praying for our girl, please add her physical health to your prayers. She appears to be physically healthy, so it's easy to overlook that as a concern. The meds she's taking can add significant weight, increase things like diabetes and elevated cholesterol, weaken bones, decrease white blood cells, etc. We need to pray that she doesn't harm her own body, but also that she sees as few side effects as possible from the meds that she needs to save her life. Your prayers mean the world to us, and we know that they are helping. 

Home

We brought our girl home a few days ago. I apologize for not updating sooner, but I've been pretty sick for almost the last week. (I currently have a very painful, swollen throat, with lovely white patches. Eew.) I had to take the little man and drive to Hospitaltown so we could be near Hope, and I had to get through her discharge and return home, and manage all that goes along with that. Anything that wasn't necessary, though, had to be backburnered, while I tried to juggle illness and daily life. 

Hope has been home for three days, and overall, it is going well. Her mood has been pretty stable. There have been some down times, and those times can be very low, but there have also been more ups than we've seen in a while. I don't know if one of her new meds is starting to make a difference, or if we're seeing a high from being home after almost two weeks away. Time will tell.

There are some things that are currently looking good. As I mentioned, she seems fairly stable the last few days. When she did have a really rough patch a couple of nights ago, she asked if we could go for a drive. This is huge, because she finds it very hard to ask for help, and letting me know that she needed a change of scenery to try to break her mood is a good step. Another positive is that she was able to feel better after a couple of hours, rather than having to just hold on and hope the morning brought a better mood. She has been hugging us, rather than just standing stiffly if we try to hug her, she has initiated some random hugs, and she has been saying that she loves us when we say it to her first. It's been probably six months since she stopped hugging or saying she loves us, and it is so nice to have that back again. I don't know if she's feeling somewhat better, or if she's just happy to be home, but either way, it's a good thing. Lastly, we have been pleased to see her enjoying some activities that she used to enjoy. For a couple of months, she often couldn't read, watch TV or movies, play video games, craft/build/create, etc. She wasn't saying that directly, but she would try an activity, and then quit after a couple of minutes, because she clearly just couldn't enjoy it. We may be the only parents in the world who celebrate video games and TV watching, but we have been pleased to see that she is doing those things, and seems to be finding some enjoyment in them. I understand, of course, that this list of "good things" are based on only a few days of observation. We may just be seeing a few good days in a row. We still celebrate the good, though, and hope that we are seeing the beginning of an upward trend. Even if not, we are happy to have good days with her.

Of course, there are still things that don't look so good. In the long-term, there is the uncertainty of such a serious mental illness. Especially given the early onset, and especially because of the psychosis, we don't know what the future looks like for her. Because the onset is recent, we don't even know that we've seen the whole thing yet. We may still be looking at the tip of the iceberg. In the present, and more immediate future, though, we're looking a few other tough things. One is the fact that her age may make maintenance difficult. The huge hormone changes that happen during puberty and menopause make those times especially difficult to control. It can be difficult to nail down a medication (or med combo) that works, when a person's body chemistry isn't stable. The other big, bad, ugly thing that makes her situation difficult and scary is that she isn't necessarily trying to get better. She feels like this is who she is. She understands that this type of mental illness has an organic cause, and is something that is technically "wrong" in her body, but she still insists that it's who she is, and shouldn't be fought. She says it's not fair to compare it to a physical illness, which of course should be fought, because a mental illness is all about who you are, how you think, how your mind works. It's one thing to say that a person's kidneys don't work right, or that their thyroid is malfunctioning, but it's a very different thing to say that a person's brain/personality/sense of self is wrong. When we tell her that it's not normal to want to hurt someone just for the fun of doing it, she hears us saying that it's not okay to be who she is. Despite all of our efforts to find a way to make her understand that these thoughts and impulses are not her, that they're what is stopping her from being her true self, she is still not in agreement. We are telling her, of course, that no one is saying she's bad or passing judgment on her. But she says that if we tell her that medication is supposed to take away parts of what she's currently feeling or thinking, then we're saying that Hope is not okay, and that only Hope-on-meds is okay. The meds are helping with the violent thoughts themselves, but not her view of them. She estimates that those particular, violent thoughts are present in her mind less than half of the time right now. This is down from being a constant presence. However, if you ask her, she still says that the meds are suppressing a part of who she is, rather than embracing that they're helping her. She has never been non-compliant with her meds (and we do watch her take them), but she says that if she were an adult or able to decide for herself, she might choose not to take them. It is very difficult to help a person who is not trying to get better, and it is terrifying to think of what the future looks like if she doesn't change her current view. I pray that medication and therapy will begin to change the way she thinks enough that eventually she will come around to seeing the help as something to embrace. Thinking of what is down the road if she continues to feel the way she does is just too much to take, so we'll continue to take it one day at at time.

I wanted to write a balanced update, but I don't want this to end on a negative note. As always, we have hope. And, most importantly, we still have Hope. I don't know what tomorrow will bring, but I know that today was a good day. Her mood was mostly mellow, and all well within the normal range of emotions that the average person sees in a day's time. Maybe one of her new meds is going to be more effective than the last ones, and we're seeing the beginning of that. Maybe not, and we're just seeing a couple of pretty good days. Right now, I'm just going to celebrate the good days. I wasn't three hours away from my child today, with just a ten minute phone call. I didn't spend my day in a hotel room, waiting for the hour and a half I could see her. I spent the whole day with her, at home, where she belongs. Not only that, but I saw her smile, and didn't once have the helpless feeling of watching her struggle with unbearable pain. Right now, that is enough. 

Thanksgiving, and Giving Thanks

We got to spend some time with our girl yesterday. It was a busy day, trying to fit it all in, but we were not willing to spend a holiday without seeing her, nor were we willing to take the holiday altogether from the little guy. Thankfully, my amazing sister-in-law took over last minute Thanksgiving cooking/hosting duties. We left home at 7:30, and drove three hours to Hospitaltown. Visiting hours started at 11:00, and we planned to spend three hours there with her. Then, we hopped back in the car to drive the three hours back home, arriving at my brother's house a little before 5:00, where dinner was ready and waiting.

Yesterday's visit can only be described as bipolar. When we got there, Hope's unit was having gym time, and we were able to join them there. She was in a good mood, and it was so nice for our kids to just be able to play together. Their smiles were priceless. Families were able to have lunch with the patients, so we did share a holiday meal. The food was rather institutional, but they tried. There was turkey, mashed potatoes, stuffing, candied sweet potatoes, even pumpkin pie. The food was clearly instant/prepackaged, and honestly, not at all good, but it was her holiday meal, and I was so happy to be able to share it with her. (I'm pretty sure she only ate some potatoes and pie, but she was also happy to devour a York peppermint patty that we may have smuggled in.) After lunch, we went to a visitation room, where we played a few games of Uno. She started to seem sort of spaced out during the second game. She wasn't really following the conversation, she was mostly just staring, and you could read on her face that she was struggling to stay engaged. After the third game, she said she didn't really want to play another one. It was clear that her mood had gotten away from her, and slipped into something she couldn't shake. I asked if there was anything specific bothering her, or anything she wanted to talk about, and she said that as usual, it wasn't anything she could explain, and wasn't triggered by anything. It just happens, and she's sort of helpless against it. These are the times when, if she were at home, she would go to her room, or say she's feeling tired, or sit in front of the TV (because if you appear to be watching, no one tries to talk to you.) Sitting there with us, there was just nothing she could do to hide it, and we all sat there not knowing what to do. I asked if she was ready for us to go, though we hadn't planned to leave for another half an hour, and she said she was. It wasn't personal, of course; she just couldn't be "on" any longer. She cried throughout those last few minutes, which is not something she often does publicly. She gave us all hugs that lingered longer than usual, and then gave another round of hugs. And then we left. It was the hardest visit we've had yet, and leaving her like that left me completely broken. 

I was able to talk to her briefly last night. They can have a little phone time each evening. On weekdays, that time falls during visitation, but if they don't have visitors, they can have a call. On weekends and holidays, the phone time is still at the same time in the evening, even though visitation time is earlier. Those are bonus days, because it's possible for us to see her, and then also talk to her later. Calls are limited to ten minutes, but our time is all very precious right now. She said she didn't feel any better than she had earlier, and she sounded so small, and so sad. I asked if these worst-case moods usually passed in a few hours, and she said no, it's just that she usually wakes up the next day feeling somewhat better. Better is a relative term these days; it may mean only that her pain is at a level where she can still function. In the best of times, though, she is able to laugh, and find some enjoyment in life. The sadness is there underneath, but at least there are times when there is happiness along with it.

I don't know if I breathed between leaving her yesterday and talking to her tonight. When she called tonight, she sounded relaxed. She joked about the bad food there, and about what she wanted to have when she gets out. She asked about the dog and the cat. (As an aside, we used to have two cats. One died earlier this month, as if that's what my kids needed. You know what they say... when it rains, it pours.) After yesterday's visit finished on such a bad note, and last night's phone call was the same, I was so relieved to hear her sounding like herself tonight. 

And now for the "giving thanks" part of Thanksgiving. 

- I am so, so thankful that our girl is still here with us. We could have lost her. Just the fact that she is here is such a blessing. If I had absolutely nothing else for which to be thankful, that would be enough.

- I am thankful for the outpouring of support we've received in the last few days. After keeping this struggle to ourselves and a very select few for months, we finally decided that a light needed to be shined on it, that our girl needed the prayers and support of others, and that we needed to be out there for others to find. The reception has been amazing. We've gotten so much encouragement and support, so many prayers, so many kind words. We have heard from so many people, many of whom we have known for years, about struggles we never knew they'd faced. It is overwhelming, and brings tears to my eyes just thinking of how many people love our girl.

- I am thankful that we are able to get Hope the help she needs. I know that my last post complained of being woefully under-insured for mental health, but at least we are able to get her the care she needs. We live in a country where we have access to great care. We live in a time when there is education about it, and no shame in seeking help. We may be racking up medical debt at a mind-blowing rate right now, but there is nothing more important than the fact that she is getting help.

- I am thankful for my beautiful family. Things may not look the way that I imagined they would be, but I truly do have the most amazing little family. I am blessed beyond belief.

- I am thankful that even when I don't understand what is happening, or what the plan is for our lives, I know who does. The Creator of the entire universe loves my little family, and is holding us in His hands. He will carry us through this.

I assure you that this is not all there is to be thankful for. I don't want to drone on forever, but I could. ;)  No matter what circumstances you find yourself in, there is always so much to be thankful for. Don't get me wrong, I am not always mature enough to see it that way. I have my share of "it's not fair" and "why me" tantrums. Fortunately, His grace and His mercy are endless, and He holds and comforts me until my eyes are clear enough to see the goodness all around me once again. 

I hope that your Thanksgiving was a good one, spent with those you love. I hope your life is filled with things for which you are thankful. If you're reading this blog, I want you to know that I am also thankful for you, and your concern for my sweet Hope. 

How We Got Here...

It is so hard to go back now, and tell the story from where we started. So much has happened in the last three months. I'll do my best to tell the backstory, so those of you who are following along know how we arrived at where we are now.

"Hope" was a normal, healthy, child. To me, she was spectacular in a million ways, but from the outside, she was really just quite a normal child. No significant medical history, no trauma, no behavioral issues. She was known for being easygoing, caring, sort of a mother-hen type, but with a funny, sarcastic edge. Earlier this year, as she neared and then turned twelve years old, we saw her start to change a little. She was a little quieter, liked to be alone a bit more often, changed how she dressed and how she wore her hair -- normal things for kids her age. No reason for alarm.

The world changed on a Sunday morning in late August. We were awakened in the middle of the night by sheriff deputies, who had found Hope out walking, a few blocks from home. They assumed she was just another kid who was acting out, sneaking out at night. They told us that we should talk to her about safety, etc., and they left. We were reeling from the shock of our child -- the one who had never been in a single moment of trouble in her life -- sneaking out in the middle of the night. We started to launch into a speech about how dangerous and reckless it was to go out at night alone, and she stopped us. She started crying, and confessed that for a couple of months, she had been having very strong, graphic homicidal thoughts. That was the moment when the world shattered.

Our days were suddenly filled with trying to understand and manage this... thing... whatever it was. We started by lining up appointments to get her evaluated. We adjusted our lives so that someone had eyes on her at all times. We locked up anything and everything in our home that could be used as a weapon. (She was telling us that she couldn't promise not to act on these impulses. In the absence of her being able to control them, we had to be in control, every moment of every day.) She never tried to hurt anyone, but she had made plans, which showed us that it was a very serious threat. 

In the beginning, we hoped this was a behavioral issue, rather than an organic one. We hoped that it could be blamed on some combination of her age, her hormones, her insomnia. Maybe it was a rather extreme manifestation of a control issue, or maybe she wasn't as easygoing as we thought her whole life, but had just been stuffing feelings instead, and it had finally caught up. As we got deeper into the problem, met with more doctors, had some psychological testing done, it became clear that this was not a behavioral problem, and that there would be no easy solution. 

In early October, six weeks from when we first learned of the problem, Hope was admitted to a psychiatric facility. There had been no improvement in the months since the onset, and the doctor was concerned about just being able to keep everyone safe. (This was the first visit with a psychiatrist. We had been seeing a therapist, but the waiting list to see a psychiatrist is maddeningly long, even in a serious situation. The psych thought she should have been committed in the beginning, but the therapist hadn't taken it as seriously, because she never actually tried to hurt anyone.) I won't go into too many details of her hospitalization, as I'm just trying to give a synopsis of the situation. Basically, there was psych testing, therapy, group therapy, meds were started, etc. Visiting is allowed for only an hour and a half each day, which is a very little time to be able to see your child in the midst of such an awful situation. There aren't many facilities in the state with pediatric/adolescent units, and we had to go with wherever there was a bed available, which meant she was three hours from home. We spent days in a hotel there, then a couple of days at home, and then back again to get her. She was away for six days. It felt like forever. 

She came out of the hospital with a diagnosis. Bipolar Disorder, mixed type. It's a tricky diagnosis, as children usually don't exhibit the classic manic and depressed episodes that adults do. Children often present with mixed episodes, which means features of both mania and depression presenting within the same day. To be honest, we don't know for certain that the diagnosis is correct. Some of the doctors she has seen are leaning more toward severe depression with psychotic features. Either way, it is a serious, lifelong diagnosis. Either way, we are looking at a psychotic disorder, which is rare at her age. Psychotic disorders usually emerge in early adulthood. An early diagnosis usually means a more severe case. Only time will tell exactly what her illness, and her life, will look like.

Post-hospitalization, we continued with weekly sessions with a therapist, seeing her psychiatrist every three weeks, meds, and continued close supervision. We waited, and hoped for the meds to make a difference. Like everything in her case, it wasn't that easy. The antipsychotic seemed to have very slightly lessened the frequency of the violent intrusive thoughts. The antidepressant might have made the very smallest dent in the depression. Really, though, it was far too little.

We found out last week that Hope has strong suicidal thoughts, and has made an attempt to end her life. She has been so honest in all of this, even when the truth has been really ugly, but she never told any of us about feeling suicidal. She has been asked countless times, but has always insisted that the thoughts were only homicidal. I don't know if she saw the suicidal thoughts as weak, or what exactly her reason was, but for some reason, she never told us that she felt that way. She finally opened up, and told her psychiatrist what she was going through. She is in so much emotional pain that she just doesn't want to be alive anymore. She can't imagine living like this forever. Unbeknownst to anyone, she made a suicide attempt a couple of weeks ago. She tried to hang herself, but didn't choose a strong enough implement, and it failed. There are no words to describe how it feels to know that, but I'm just going to try to plod on with the facts here, and not muddy this already-long update with my messy emotions. She did it during the daytime. She did it with her bedroom door open, because she does not have door-closing permission in our current situation. She did it right in the midst of what we believed to be strict supervision. Everything in our home that could possibly be used as a weapon is locked up, we never give her more than brief periods of time alone in her room (and even then, the door must be open), and she still managed an attempt on her life.

I guess I should address how it could happen that we didn't know that, or how we didn't know any of this. Any of you who know us are aware that we are a close-knit family, and that we spend a lot of time together. We couldn't possibly overlook something so serious, right? The mind-blowing thing is that she has never stopped seeming like herself. She is occasionally more withdrawn, or a little more edgy, but for the most part, she is exactly as she has always been. Many people in her life have no idea about any of this. The people who do know are just blown away. It can't possibly be true. She seems so normal. I can't explain how she keeps it up. She just says that she's not comfortable showing people what's going on underneath. It makes it so, so hard to judge how she's doing from one day to the next. Fortunately, she has been pretty honest when asked directly. Still, we can't trust anything in this situation. We have to proceed as if we were in a worst-case scenario, because at any point, we could be, and we would never know it.

Anyway, back to the story. From the session last week where she told the psych about the suicidal impulses and attempt, we went right back into another hospitalization. Once again, there were no nearby facilities with any room, but the hospital that she was in last month had room for her. She is three hours away again, but is in a familiar setting, and is being overseen by the same psychiatrist. Dad wasn't able to take the time to go out of town this time, so Mom and Baby Bro headed there for a few days. We spent a few days in a hotel there, visiting her for the short time each day that we were allowed, and came home yesterday. We will go to Hospitaltown very early on Thursday, spend a few hours of Thanksgiving with her, and then make the three hour drive right back home again to have Thanksgiving dinner with some extended family. I don't know yet what happens after that. We will be near her as much as we can manage, but it logistically and financially difficult to spend long periods of time away from home.

I guess I've done the best I can with how we got here, at least without turning this into a novel-length entry. So, where are we now? The Hospitaltown psychiatrist is saying that he expects her to be there for a minimum of another week or two. We hope to bring her home when he finally does discharge her, but depending on what her state is at that point, they have told us we may have to consider a longer-term placement somewhere. We are willing to rearrange our lives in whatever way necessary to watch her all the time, and keep her safe at home. We are, thankfully, in a unique position to be able to do that, since Dad works from home. He is willing to work overnight, so he can watch her at night, and I can watch her during the day. Still, no safety plan is enough for them to release her, until she is saying that she has some ability to control herself. She wants to come home, but she is being honest, and saying that she can't promise that she won't hurt herself if she got the chance. Just today, we switched antipsychotics, since the other one wasn't working for her. We also added a mood stabilizer, and will keep the same antidepressant. She is working on therapy and coping skills, but since this is clearly an organic problem, we are going to have to find medication that works for her. I hate that. I've never been one to throw meds at a problem, and I especially don't like to give them to my children. These are serious drugs, and each comes with its own set of side effects and complications. We simply have no choice, though. Currently, we are fighting just to keep her alive.

I will try to keep this blog updated. I know how badly people want to keep up with how she's doing, and we simply can't call a big list of people every time something happens. Some days, it's all we can do to keep putting one foot in front of the other. I will do my best to post important updates here, though. In the meantime, please pray. Your prayers and support mean so much to us. Pray that we are able to find meds that work, and an effective strategy for long-term management. Pray for sweet Baby Bro, who has found himself in the midst of a situation no child should experience. Pray for financial provision. (Our insurance plan has awful mental health benefits, which ran out almost immediately. Our new plan, which starts the first of the year, will be better. For now, everything is out of pocket.) Pray for Hope's friends and family, who are heartbroken, and struggling along with her. Most of all, pray for our sweet Hope. I can't imagine anything scarier or more overwhelming than being a little girl who is suddenly hit with the onset of a very scary illness, where your own mind turns against you. Pray that our Hope finds some hope, and some peace, in the midst of this storm.