"Some days the memories still knock the wind out of me."
Two years ago today, my family spent the day at my son's first football scrimmage. We chatted with the parents around us, we cheered, we laughed, we soaked up some sun and fresh air. Sure, we had a newly twelve year old who had been pretty moody lately, and chose to sit under a tree away from the crowds, but hey, moodiness comes with that age, right? You roll your eyes and move on. We were happy. Life was beautiful. We had no idea that that very night, our life would change forever. We had no idea that that day was the last one we'd ever spend so carefree. If you know our story at all, you know that we didn't discover Hope's illness in a gradual or gentle way. What she had been living with for a while could no longer be contained, controlled, or hidden, and it exploded. Everything was ripped out from under us in a moment. We didn't fully understand what was happening, but we knew that life would never be the same.
Today, I grieve for that family. I'm sad for what happened to them. To us. I am hurt and angry and bitter. Some days I feel hope. Some days I feel sadness. Some days I don't feel much of anything at all. But today, everything in me is a screaming, thrashing, raging mess of pain and anger. And underneath that, there is a sadness so deep and dark that it threatens to swallow me. I wanted the world to know what our life is like, right? I promised to tell this story, because it needs to be told. Well, sometimes it feels like this. It's so raw and ugly and painful that I don't want to shine a light on it. I want to hold it all together, and show hope and positivity, and inspire others to feel those things, too. The truth, though, is that some days, I can't find that anywhere in me. Some days it's all I can do to keep putting one foot in front of the other, because the world is still moving, and somehow, I must keep moving as well.
My life now is very different than the life of that woman from two years ago. There are psychiatrist appointments (at least monthly), therapy appointments (at least weekly), weekly blood draws, and weekly med pick ups. There are phone calls a few times a month to the psychiatrist's office, weekly calls to the pharmacy, and regular check-ins with Hope's case manager at Magellan (the contractor that BCBS uses for mental health stuff.) There are currently at least several weekly calls, emails, forms, record releases, etc. for the current attempt at getting Hope in with a specialist at a large university research hospital. (Before that, there was a similar song and dance for partial hospitalization, and before that, the attempt at residential. If it's not one thing, it's always another.) There are regular visits to Hope's pediatrician who helps manage and monitor the physical effects of the high risk meds. There is always, always at least one insurance or billing issue at any given time. (When you have as many things as we do, you are bound to see some mistakes. We've seen things as weird as bills accidentally put in hubby's name because they switched the patient and policyholder information, and a whole slew of ordinary things like bills being denied because they used the wrong code, or because they said outpatient when they were actually inpatient, or because they sent the claim to the wrong address.) When this happens, it's on us to make the calls to the provider and to the insurance company to find out where the mistake is and have that person fix it and resubmit, and it always takes weeks of follow-up calls. We have seen a schizophrenia specialist to help us determine a treatment plan, neurologists to check for physical causes for symptoms, cardiologists to watch for damage from high risk meds. We have support group meetings for families of individuals with mental illness. We have meetings and activities for my son's support group of children with ill siblings. Life is full of appointments, phone calls, emails, etc.
Besides managing those things, my ordinary daily life is spent managing this illness. Schizophrenia used to be called dementia praecox, which means premature dementia. Because schizophrenia is unfamiliar to many people, I think many don't understand that beyond the hallucinations and delusions there is a debilitating illness that looks like dementia. I assess Hope's mood and functionality constantly. I baby-step her through her day, because she doesn't remember to do things for herself, and when she does remember, she doesn't have the oomph to make herself get up and do them. I have made charts and lists of things like self care and household chores. I repeatedly remind her to look at those things, because she won't without prompting. Then I go through each item individually, because even if she says she's done everything on the list, chances are she skipped over some things. Without my intervention, her hair becomes completely matted underneath, because if she does brush it, she only gets the top part. I'll find that she doesn't know where her toothbrush is, and then discover that it was never unpacked after her last trip to the hospital, and that she hasn't brushed in two weeks. I remind her that you have to think about the weather when you get dressed, because even if you love that shirt, it's not weather-appropriate to wear a long-sleeved thermal when it's 95 degrees. I'll point out that if she wants to wear short and a tank top, she might want to do some shaving. She leaves a trail of messes wherever she goes, because anything she touches is just left lying where she used it. I tell her that she has to come back into the kitchen and close cabinets after getting a snack, or close up the bread that she used and then left open on the counter. I tell her to pick up the nail polish that she used and forgot to close, which has now dried up. I check the stove if she uses it, because she doesn't always remember to turn it off. I peek into her bathroom to make sure the toilet is flushed, because it usually isn't. I remind her to put her seatbelt on, which she only occasionally remembers on her own. I remind her to close her door when she gets out of the van, because sometimes she just gets out and walks away.
All of these things have to not only be done for her, but they have to be done in a way that preserves as much dignity as possible. She's 14 years old, and even if there are many ways in which we have to treat her as if she's 4, she should not be made to feel that way. It's a delicate balance, because she has special needs, but she does not have any intellectual or developmental delays. It's not like she has the cognitive capacity of a young child and wouldn't mind being treated like one. She is very much a teenager, but she's one who happens to be unable to function like others. We have to manage that while keeping her dignity intact. We may need to tweak or decline plans that would keep us out too late, because her sleep must be carefully guarded. We don't embarrass her by giving that as a reason, though. Her motor/planning skills are impaired, and it causes her to spill or drop things more often than others do. It would be condescending to tell her she's not allowed to use a regular glass, but it's kind of fun to let her pick out a fun Tervis or lidded cup. (I happen to carry a Tervis almost all the time myself.) She can't be left alone, but it would be embarrassing for her to have a babysitter at an age where other girls are babysitting. So hubby and I almost never go out together, and only leave her occasionally with our one local relative, because hanging with family is not being babysat and doesn't seem weird. If we're around other people, and I've asked her to do something that she has clearly forgotten, I'll prompt as casually as possible. ("Oh, I'm glad you didn't grab my purse from the van yet, because I also need you to get the such-and-such while you're there.")
As you can see, caring for Hope is a 24/7 job. But, of course, that's not all there is. Adding all of this to our life didn't make everything else go away. I still have to do all of the things that everyone does -- I cook and clean and shop and manage our home and lives. Hope isn't my only child, I have two, both of whom I homeschool. School takes hours of our day, plus additional prep time and such for me. Baby boy plays sports, takes music lessons, acts in a theatre group, takes classes, belongs to clubs, and spends time with friends. Baby girl doesn't do as much socially, but does participate in youth activities at church and is the stage manager for the kids' theatre group. Our family volunteers. Hubby works 50 hours a week. I work as much as I can, though sometimes that amounts to only a few hours a month, depending on how our month has been. (I do computer-based work from home, and have the flexibility to work as much as or as little as I want. Our ideal would be for me to not work at all, but the medical bills never stop coming.) When I have spare time (as if!), I research, I read, I educate myself.
Two years ago, my life was mine. Now, schizophrenia has taken over. In every moment, it is there. Over time, we have learned that it's possible to smile again. There are moments of happiness. They aren't the same as the carefree happiness we knew before, though. I posted the other day on FB that I had the best day. We went to a concert of one of the little one's favorite Christian bands, and he had so much fun, and smiled so big, and worshipped so sweetly. It was a great night. What I didn't mention was that Hope mostly sat there, arms crossed, looking annoyed, and then fell asleep. (Seriously. At a live concert. Asleep in her chair.) Even when we're happy, we aren't happy the way we were before. It will never be like that again. Our child has a severe illness for which there is no cure. At best, she will be "functional," which means maybe holding a part time job and maybe living alone, but with support. She will always need care. We will always worry. She has been both homicidal and suicidal, and I don't think I will ever take another breath without those fears somewhere in my mind. Even if she someday achieves stability that so far has seemed out of reach for her particular case, she will still not be "normal." We will never stop fearing for her. (And honestly, to some extent, we will never stop fearing her.) I am heartbroken for this life that is ours, and grieved for the one we used to have. I am angry at what each of the four of us has lost, and at what we must each bear.
Life is just hard sometimes. And while I want to leave you with some lovely, flowery words, I don't have any today. I am just a mess of angst. This is life, too, though. This is real. This is raw. This is honest. Maybe sometimes we just need to see each other's ugly mess, so we can all be okay with the same in ourselves.
