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.