Most of the last three months has been good, relatively speaking. Compared to where Hope was several months ago, the last couple of months have been good. In fact, there was a period of time when we all agreed that she was the best we've seen in more than a year. She was social and interactive (relatively speaking, but still...), she was playful, she laughed, she often genuinely seemed to be enjoying herself. Friends kept telling us that they couldn't believe how good she looked. In fact, there are some people in our lives who had never seen her look like that, and didn't know she had that in her. I think sometimes people just assume that by nature, she's quiet, not very social, not very talkative. They don't understand that that's not her nature, and that's why we describe her as not herself when she's like that. Anyway, she has been quite animated lately. Life is never easy, she's never her old self, and all the things I mentioned in my last post apply to our lives, even in the best of times. Those "best of times" sure are sweet, though. It's the closest we get to normal, whatever that means, and it's the closest we get to having our old Hope back.
In the last few weeks or so, we've been faced with the fact that she's slipping again. She's not at a low point right now; if you had last seen her several months ago, you'd still think she looks better now than she did then. Compared to how she's been the last couple of months, though, she's definitely going downhill. She always needs significant time alone, but when she's at her best, she enjoys being out and about for a few hours at a time. Right now, she can still tolerate being around people, but it's getting harder. She's less likely to enjoy herself, and becomes annoyed pretty quickly. (Though at this point, she's still able to put on her polite face, and her irritation isn't visible.) As she slides down that ugly hill, she will be less and less able to interact. Eventually, she gets to a point where she does almost nothing but sit motionless and expressionless, all day every day. She will respond if spoken to, but does not initiate conversation. She will be a hollow shell of herself. We're not there, and I'm so thankful for that. It is hard to know that's where we're headed though.
The things we can actually see and evaluate most clearly, more than the social things I described above, are the cognitive symptoms. Even when Hope is at her best, she has problems with executive function, working memory, motor planning issues, etc. At her highest points, though, she is relatively functional. As she starts to slip, we see these things become bigger and bigger. One recent example of this is the fact that twice in the last week or so, she walked away from a sink with the water still running. It simply didn't occur to her that she should've turned it off. Another example happened last Friday, as she answered a phone call by turning on the phone and simply holding it to her ear. After several long seconds, I said, "Say something!" Afterward, I asked her why she didn't say anything when she answered. She looked at me like that was a stupid question and said, "I was waiting for him to say something. He called us." I asked her how he was supposed to know she'd answered, and she said she didn't understand what I meant. I said, "When you answer the phone, you say 'hello.' That's how they know you've answered." She just stared at me, blankly, and finally said, "Oh. Yeah..." This child is 14 years old. It's not like she's never answered a call before. It's not like she hasn't been picking up play phones and saying "hello" since she was two. This time, though, the association between those things in her brain just weren't there. A few days ago, I realized that the back of her hair was matted into a baseball sized mass, which I assume was developing underneath for a while, and I didn't notice it until it was large enough that it couldn't be covered by a layer of hair over it. I haven't been brushing her hair recently, because she'd been doing a good job, but I guess we're back to that again.
As for the all-important positive symptoms, I can't say if there's been an increase. She's still not talking about that. For four months now, she's denied having any hallucinations. With her history, we know that's unlikely to be true. She is still sticking to I'm not hearing or seeing anything, and I wouldn't tell you if I was. She knows how to play this game. She knows what hospital admission criteria are. She's tired of hospitalizations, and she knows what to say to avoid them. Is there a chance she's telling us the truth? Perhaps. Given her history, the severity of her symptoms, her resistance to antipsychotics, etc., it's not likely. We would love to believe that she's telling us the truth, though. We hope for the best case, but follow all procedures for the worst case, so that we can keep everyone safe.
If we're Facebook friends, you may have seen an article I shared a few days ago. It was written by a woman whose son has schizophrenia. If you didn't see it, and you'd like to check it out, you can find it here: http://www.usatoday.com/story/news/nation/2014/11/16/schizophrenia-mental-illness-treatment/18647395/. When I posted, I shared a paragraph that really resounded with me. Despite her relative good fortune, Laura says she can never move forward because her son never stops dying. "Twice a year, right in front of me, he disappears into psychosis, and there is very little left of who he is. Then medicine resurrects him for a few months, I have much of my child back, then he dies again." I don't know how to explain it to someone who hasn't lived it, but this is how we feel. I hesitate to use the word "death," because I don't want to minimize the pain of any parent who has ever lost a child. Please understand that I use that word because I can't find another way to describe the pain and anguish of watching your child cease to be who she once was. I do not use it lightly, though, and I don't mean to suggest that I know your pain.
Whatever word you use, whether it be death or loss or something else, it is painful to watch someone you love slip away. Much like a person with dementia or Alzheimer's disease, our Hope loses herself when her illness is at its worst. As the quote above mentioned, it happens over and over. Schizophrenia cycles, and while we cherish the times when she's at least recognizable as some form of our Hope, we always know that we're going to lose her again. There is some comfort in knowing that we'll probably get her back, in time. This is not assured, though. With repeated psychotic breaks, people often decline over time, and they don't always return to as high a level of functioning as the last time. On top of that, there is the constant fear that one day we'll lose her altogether. The suicide rate in schizophrenia is frighteningly high, and she has attempted before. We worry that she'll just get tired of it all, and decide she's done. Even if we get to keep her here on this earth for a very long time, and even if she cycles back around to a better place again in a few months, it is still hard to watch her go downhill.
For right now, we are trying to soak up what is still a pretty decent version of our little girl. It is hard every day, though. I've always liked the saying, "It doesn't matter if the glass is half full or half empty. Be grateful that you have a glass, and there is something in it." I try to live that way. It is so, so hard, though, to be grateful that there's something in your glass while watching it slowly drain away. How do you not focus on that decrease? I do enjoy the time I spend with my girl now. It's not always easy. She's not always pleasant. She often resists being around others, so it can be hard to spend time with her. But there are times, and I soak up those times. It hurts, though. When she smiles a real, genuine smile, my heart leaps. But then it sinks with worry about how much longer it'll be before it's gone again. My hopes are built on little things now. We're only a week from Thanksgiving. Hopefully, she'll still be herself enough to enjoy visiting with extended family. What about Christmas? It doesn't seem likely that she'll decline slowly enough to still be functional by then. It's also not realistic to think that she'll be on the upswing by then, either. There's a good chance that Christmas will pass with her in a pretty flat state. I hate to think of that. I love the Christmas season, and I love doing it with my family. I want to bake cookies, and watch movies, and look at Christmas lights, and shop, and wrap, and commit random acts of kindness... the list goes on and on. It all feels so weird when we have to do it as a family of three plus one, rather than a family of four. I don't want to make it sound like she's ever excluded, but sometimes she's just not present, even when she's there. It feels sort of like the three of us are carrying around one of those life-size cardboard cutouts. Or like we're living some kind of weird Weekend at Bernie's story. We try to make things feel as normal as possible. We try to teach our son that it is possible to choose joy and to enjoy experiences even when everyone isn't participating. We try to remind ourselves of that fact. It's sad, though. So many times, in so many ways, loving someone with schizophrenia is just really sad.
I don't want to write a novel, but I want to touch on one more thing. People often ask how they can pray for us, and there's something specific right now besides just Hope's health. (Though that is, of course, always the big thing.) We're faced with really bad news for this coming year's health insurance situation. Our plan will no longer be carried, and we'll be forced to switch to a plan that covers a much smaller number of providers. We have two different options, and each covers a major hospital network in our area, where our old plan accepted both networks. No matter what we do, we'll lose at least one member of Hope's current team. It'll probably end up being the therapist that we love. We'll also be in a situation where only one local psych hospital is in network, and that's scary. When a hospitalization is necessary, they start a bed search, and you end up wherever they find a bed first. There is no choice in this matter, so we very well could end up with out of network hospitalizations. Either of these new plans, with drastically reduced numbers of providers, is still going to mean a huge increase in monthly premiums. I don't mind talking numbers here, since insurance is no longer personalized and people are all charged the same based on age, gender, and location. Last year, we paid a little over $1,200 a month. This year, that same plan cost us a little over $1,500 a month. The new one will be $1,879. Yes, you read that right. In order for us to get the coverage we need for our very special girl, we will be paying nearly nineteen hundred dollars a month, for four people, for premiums alone. This is before copays, before coinsurance, before non covered expenses, and this is a plan with drastically reduced numbers of providers, and the forced loss of a loved and trusted therapist. On top of all of that, we got a letter in the mail today saying that Hope's psychiatrist has to contact them and basically convince them that she has to be on the particular med that she's on, or they won't cover it in 2016. The whole thing is a train wreck. The state of our current insurance system is a wreck. I'm not one of those who blames the Affordable Care Act, the president, or whomever else people are blaming these days. The ACA did some great things. It was an attempt to fix a badly broken system, but the system is still rather broken. I have no interest in politics whatsoever, but have been dipping my toes into the world of advocating for policy change, because people all over this country are going without needed care, or facing financial ruin in order to get the care. Change happens slowly, though. In the meantime, we have to manage to pay astronomical costs for Hope's care. It's stressful. It's stress on top of stress.
I hate to feel like I'm always a bringer of negativity. I want to leave people with hope. There is always good to be found, if you look for it. Since we're so close to Thanksgiving, I want to tell you just a few of the countless things for which I am thankful. I am thankful that we were able to have a period of relative stability. I am thankful that our Hope has been at home for nearly 5 1/2 months straight -- the longest period between hospitalizations since the onset of her illness. I'm thankful that, despite the stress over costs, we've never had to decline any treatment, therapy, or med that we thought might be helpful. I'm thankful for blessings that far exceed what a large majority of the world's population can even dream. I'm thankful for a husband who works hard. I'm thankful for a daughter who shows me every day what strength is. I'm thankful for a son whose tender heart makes me a better person, and whose laughter fills my heart up. I am thankful for extended family, and for friends, many of whom are at least as close as family. I am thankful for you, wherever you are right now, spending time reading about my little family, and hopefully taking something away from our story. More than anything I am thankful for the oceans of grace that my Savior lavishly pours out on me. And on my hardest days, when I am completely torn apart by my daughter's brokenness, and when I fear that her days on this earth will never be easy or fair or comfortable, I am thankful for the knowledge that someday she will be made whole again.
I hope you have a wonderful Thanksgiving holiday. The kids and I will be heading to my hometown to spend some time with extended family. Unfortunately, my hardworking hubby will not be able to join us, but the way I see it, that just means we'll have to turkey all over again when we get back! We've canceled appointments for a week, and gotten permission from psychiatrist and pharmacist to get a little longer supply of meds than we usually get -- you know, just the regular things families do before they travel -- and we're looking forward to seeing some of our very favorite folks.
