It's been a long December and there's reason to believe maybe this year will be better than the last. I can't remember all the times I tried to tell myself to hold on to these moments as they pass. A Long December, Counting Crows
It's been six months since this terrible blogger last updated. There haven't been any really major developments or events, and it has now been six months since Hope's last hospitalization. Not all of it has been easy, but there hasn't been anything that warrants hospital admission. In our world, this is something to celebrate.
The rest of the summer passed with Hope pretty much the same as in my last update. She wasn't at the height of functionality, but it wasn't the worst of times. Something she kept asking to do when she was in the hospital this summer was to visit the amusement park as soon as she got out. However, we discovered that she's no longer really able to ride roller coasters, which has been something she's loved since she was seven years old and tall enough to ride one for the first time. She tried a couple of her old favorites, and melted down attempting it. She screamed and cried, struggled frantically to get out, and baby brother had to hold her hand all the way through. (There are no words for the sweetness of that boy.) She cried as she talked about how she just keeps losing things she used to love, and my heart broke at the truth of that statement.
The fall passed similarly to the summer. The highlight of fall was a trip to Orlando where we spent a few days visiting some Disney parks, and then a few days visiting family. This is the biggest thing we've attempted since Hope became ill. We've done beach trips, but that's just a four hour car trip and then a vacation of relaxation. Orlando is farther, and Disney is more intense, and we were a little worried about how it would go. There were moments of fun, and moments that were hard. The first park day was a mix of fun and stressful for Hope. On the second park day, she was so flat and disconnected that she wasn't even able to follow as we walked or notice that we were moving forward in lines without us getting her attention and telling her that she needed to step forward. We rented a wheelchair for her, so we could keep her safely with us. It was hard, this visual reminder that she's not okay. It was good for her, though. It gave her a bubble of personal space, it took away the need for her to stay engaged, pay attention, focus on everything around her, etc. After a while, in this low-stress little bubble, she perked up. She continued to ride in the chair all day, but would get out for rides/attractions. She did end up participating in the fun stuff that day, and that's the important thing. She didn't interact much with family when we visited, but it was still nice to be with loved ones, and they do show her love no matter her current state. <3
Symptomatically, Hope is doing similarly to my last update. I broke down a number of different categories and symptoms there, so I won't do it again here. She's doing relatively well socially, in that she is taking one class that she really enjoys, and has grown close to a new friend over the last few months. She still only engages for maybe a few hours a day, and feels drained by the effort. She can't always manage it, either. One day last week, some family friends that she really likes spent a few hours here, and despite being in the same room as us, she was unable to engage at all beyond saying hello and answering a direct question. Most of the time, though, she can enjoy things and people for a little while at a time, at least a few days a week. For her, this is success. Our biggest daily battles continue to be just keeping her functional. She doesn't do well at caring for herself, her belongings, her surroundings, or keeping up with the things she's supposed to do. When she completes tasks/chores, they're done sloppily and/or improperly. There may be aspects of laziness or teenager-ness in it, but there's also genuine inability to see details or remember the proper way to do things. The fact that she's always half disengaged from the real world means she sort of crashes around the house, banging into things, knocking things over, dropping things, making messes. When she's in a good place, she's able to joke about it. We call her a wrecking ball, or joke that she looks like the alien guy in Men in Black who is wearing a human body for the first time and not using it very well. (No haters, please. She uses humor to deal with her situation, and it's easier to say these things in a way that's amusing than for her to be angry that her brain and body don't work very well together.) She breaks things often enough that we have a broken glass protocol that we've gotten really good at. We've also learned to do things like check the stove every time we walk through the kitchen. (It's not even enough to do so after she's cooked something. One day, she was going to make herself some lunch, put a pan on the stove and turned it on, and then got distracted by something else and left it without ever even cooking anything.)
School continues to be one of her biggest struggles. Her brain just doesn't always process information very well. Sometimes, simply following conversation is hard. There have been times when she's asked me to repeat something more than once, and then finally said, "I hear you, but I don't understand what you're saying." Imagine, then, if following simple conversation is hard, how hard it must be to take in and use new information. Shortly before our holiday break, there was a day when she couldn't figure out what she was supposed to be doing in math. I was trying to explain it to her, but she couldn't understand at all. I realized that she had done the same thing the day before, so I said, "Okay, let's go back and look at what you did here. See, you did such-and-such, and then you did this thingy, and then you whatevered." (That may not be the exact process, but it was something like that. ;) ) She couldn't understand the thing from yesterday. Imagine that. She was doing it one day, and the next day she couldn't understand what the process was supposed to look like. She asked if she could step away from it for a while, and then she just cried. "I just hate that my stupid brain won't do this. Isaac can do it with no problem and he's twelve! Why can't my fifteen year old brain understand a simple concept?" (It was a review concept, and yes, her twelve year old brother does fine with it.) I wish I could say this frustrating incident was an isolated one, but it happens frequently to her. School is a constant struggle. We've spent the last few years trying to figure out if there's a better way to do things for her, but her entire care team has come up with nothing better. No manner or method or setting can change the fact that her brain is tricky, that it isn't always very good at remembering things or using skills, that its ability to do so varies which means that you can't even plan things out to her abilities because said abilities change, and that the only thing you can count on from her is a constantly shifting playing field. We keep working through it the best we can. We take breaks when she gets to the point where she simply can't handle it, and we push through when she can. I am able to remind myself that education isn't the most important thing for her -- that her health and safety are -- but I am not willing to just give up, either. I don't want to send her the message that she doesn't have to learn like other kids, because she isn't like them or doesn't have the same future as them. I want her to learn the things she needs to and while higher education may not be in her future, I want her to be able to pursue it if she so desires. So I walk the fine and ever-shifting line between "education is important and the key to good things and self esteem" and "education isn't everything and she needs to be healthy and not melting down because of school stress."
Hope's psychotic symptoms have remained pretty steady. It was hard at first to admit that we'd gone as far as we could with antipsychotics, and that barring new med breakthroughs or miraculous healing she was likely never going to be free of daily hallucinations. She is coping with it pretty well. Keep in mind that we only ever had control over them for a relatively short time, and that for most of her illness she's been dealing with them as a part of her daily life, so that wasn't new for her. The new was just the acceptance that it is going to be this way, where we had previously been trying everything we could to see if we could make the hallucinations stop. The voice continues to be the most irritating symptom. It has all but stopped the violent commands of Hope's earlier illness, though. It mostly focuses on criticizing her and saying mean things to her and about her. It's hard enough for many people to hold onto any self esteem with a critical inner monologue, but imagine if it wasn't just critical thoughts, but what sounds like an actual voice that you experience as being someone totally different than yourself who just criticizes everything you do. As if her illness doesn't already make her feel different, and as if her brain's refusal to functional normally doesn't already make her feel stupid, she has to live with a voice criticizing her, telling her what a freak she is, telling her how stupid she is, telling her how unattractive she is, and on and on and on. I know the voice isn't a real, separate entity, and yet somehow I still find myself hating it. Lately, Hope's had some visual hallucinations that are even more vivid and intense than usual, and she's been afraid. Three nights ago, she was up very late because she was just too scared to sleep, and finally fell asleep in the living room with Dad sleeping on the couch so she wouldn't be alone and afraid if she woke up. The last two nights, she's slept in her room, but with the door open and someone sleeping in the living room nearby. Her usual sleeping arrangement is in her room with the door closed, and an alarm on the door so we can hear if she opens it. Even if we didn't have this safety plan in place, though, she would prefer for her door to be closed and for there to be absolutely no light or sound. That means it's a very far deviation for her to want the door open, some light coming in, the sounds of people nearby, and then someone sleeping fairly nearby. She's very, very afraid, and especially at night. There's nothing we can do but reassure her and make her feel as safe as we can. And, of course, be on high alert because we're leaving her door alarm off. It's hard to get proper rest that way, but what choice do we have?
Despite all the hard, life is still beautiful. Too many people with our daughter's illness choose not to keep living. She has made that choice before, and thankfully failed in her attempt. When the days are hard and I feel exhausted, I remind myself that she is here. That, in itself, is a blessing. If we can keep fighting for her, keep her living and breathing and learning and loving, help her find happiness and peace, then we are succeeding, even if it doesn't always feel like it. And when I think of even the possibility of her choosing not to live, the possibility of this world without her light, I am reminded that I would rather live days of stress and difficulty than live a single one without her.
I hope your holiday season has been full of love and laughter and all things good. I pray that the coming year brings blessings to all of you. I hope that each of you know that you are loved and cherished and appreciated beyond words.
