I kept thinking that once I knew for sure what was happening, it would be less overwhelming, and then I could say “Hey, here’s the story, I’ve finally unclenched long enough to tell you.” I could sit down and figure out what to tell, how to tell it, and then I could assure you that everything was going to be okay and not to worry.
That was a good idea, I guess. I mean, it would’ve been, if it had worked.
It doesn’t work because I don’t know if everything is going to be okay. A rather large portion of my brain is convinced that nothing is ever going to be okay ever again, but even if I manage to turn down the volume on my fears, the fact remains that I don’t know. We don’t know.
Once upon a time I believed that if I loved the stuffing out of my kids and worked only part time… or stopped working entirely… or worked from home… to better afford me the time and space to pack their lunches and do their laundry and tell them to put their stuff away and remind them that I love them beyond measure, the road might be a little bumpy, but it would be okay. I would be a good mother and they would be happy and healthy.
That was a good idea.
What we knew, the first time Chickadee got sick, was that she seemed unable to shake off a recent strep infection. The first round of antibiotics did nothing at all; the second took care of the sore throat, but she never really got better. Her rash—lately solved with the Magic Medicine—busted out again, even though it was winter and winter is usually rash-free. She was tired. Irritable. Dizzy. Feverish on and off. And… weird. There should be a medical word for that (maybe there is?), but all I can tell you is that she was decidedly unwell, but she was also… not quite herself, otherwise. She had trouble sleeping. She was picky about food in ways she hadn’t been before, then refused to eat certain things, then refused to eat at all… because she thought the food was making her sick.
Her behavior was erratic, and so was her health, and things went from weird to worse and that’s how she ended up in the hospital, the first time. No one knew quite what to make of what was happening, but the doctor thought she might have PANDAS. As there’s no standard for diagnosis, really, and no universally agreed-upon standard of treatment, anyway, we were treated to the joy of being bounced from doctor to doctor while they poked and prodded and reached no conclusions. But another antibiotic seemed to resolve the purely-medical stuff, finally, and we were sent home to deal with everything else on an outpatient basis.
By the time they sent her home, Chickadee was convinced the doctors were useless, nothing was fixable, she would always feel awful and always be sick. The doctors assured us she was fine and it would just take some time.
We focused on getting her to eat. It was pretty much a full time job; once you’ve gotten out of the habit of eating regularly it’s hard to find your way back, particularly if you still think food is the thing making you sick.
Things got a little better. She went back to school. We continued to see the cadre of doctors weekly, and they poked and prodded and weighed her and told her to keep up the good work. She put on some weight. She smiled again. She stopped having panic attacks every time she had to eat. I started to unclench.
And then she got sick again. Again, we got the autoimmune-blah-blah-blah speech about how she clearly has some sort of autoimmune dysfunction, they’re not sure what it is, as long as these catastrophic things don’t happen, probably it will resolve on its own, we can run some more tests, this may just be how she is. Probably it’s just a virus and nothing to worry about.
Except that while I was trying to convince myself I was overreacting, she started cutting herself. So we hid all the sharp things and consulted her team and they suggested a different hospital, skilled in dealing with “these sorts of things,” and we brought her there for her second hospitalization. We brought all her medical records, all of the tests and transcripts and information about PANDAS and asked them to please do a comprehensive review of EVERYTHING, because no one had ever really decided if it was PANDAS, and clearly something more was going on than garden-variety adolescent angst. I mean, come on, a couple of months ago she’d been fine. Then she got sick. Then she got sicker.
During the second hospitalization, she started telling us she was hearing things. Also she gave up the shy, scared, “I don’t belong here” routine in favor of befriending the kids who were repeaters—they taught her how to get around rules, how to find things to hurt yourself with, and what to say to get them to let you out. “All I had to do was tell them that I realized hurting myself was really wrong, and I now have the coping skills to avoid those sorts of negative thoughts,” she told me, making air quotes around “negative thoughts” and rolling her eyes.
She went back to school. We went to family therapy and discussed the unbreakable house rules and why they’re important. On a good day, she’d appear to be getting it. On a bad day… she would shriek at us. Stomp around. Throw things. “Accidentally” trip her brother on the stairs. “Borrow” things that weren’t hers. “Forget” she wasn’t supposed to do this or that, or that she was grounded. One minute she would cling to me, and the next she would tell me to leave her alone and flatly state that “people make up love to make themselves feel better about things.”
Her friends had been so worried when she was gone, and displayed, I thought, a tremendous amount of compassion and acceptance for young teenagers. They welcomed her back with open arms, but after the second hospitalization she withdrew from them, telling me they didn’t really care about her, and kids were whispering about her at school. She turned down invitations to hang out. She told me they just felt sorry for her.
We had a complete neuropsych evaluation, and it concluded she was depressed, obviously, and also that she had Asperger’s. Huh.
Getting her through to the end of the school year felt like an endless slog through shark-infested waters. We tiptoed through everything, never knowing what might set her off. We also discovered that she was reporting rather interesting versions of events to her friends—including following a violent meltdown she had here with rushing to tell everyone that I’d attacked her for no reason and she was scared. Have you ever found yourself wondering if DFCS is going to show up on your door and take you away? That was a super few days.
We spent a lot of time with her psychiatrist and therapist. She got strep again; got worse; did antibiotics and got better; got worse again, even with the strep gone. I asked her psychiatrist about PANDAS again. “I don’t think we can conclude a connection at this point.”
With the pressure of school off, she could rest and relax and recoup and next fall would be a fresh start.
But she got sick again (headaches, dizziness, other amorphous physical symptoms) and then started having trouble sleeping again and then the “I can’t eat that”s were back. We discovered she had been playing rather fast and loose with actually taking her meds, which might explain some of her symptoms.
We were already researching residential facilities the morning she walked into my office, helped herself to a pair of scissors while I was in the shower, and sliced up her leg from knee to ankle. I was rinsing the shampoo out of my hair when she ran screaming into the bathroom, bleeding all over the place, begging me not to send her away, fix it, stop it, make the voices stop, I love you Mommy don’t send me away, I hate you, you never loved me, I don’t care what you do, I hate you.
I’d love to tell you I’m awesome in a crisis because I’m cool-headed like that, but the truth is that I was awesome in this particular crisis because I think I’d known it was coming. We hadn’t moved quickly enough, maybe because I’d still hoped things would get better somehow. And by this time I’ve bandaged her up quite a few times.
I got her cleaned up, I finished my shower, we called her psychiatrist, we took her back to the acute care hospital. We spent the next few days on the phone with the insurance company and the residential center. Finally, there was good news and bad news: The good news was that the center finally had a bed; the bad news was that our insurance would not pay for it.
We transfered her, anyway. On her first day there, she wrote me an eloquent letter about how much she loves me, how she realizes that I am only doing my best to take care of her, but she has realized the error of her ways and is ready to come home and live by the house rules. She will behave and not harm herself and she will eat balanced meals and be kind to her brother and respectful to Otto. Leaving her there in the hospital would be a grievous error and only prove to her her very worst fear, that I don’t love her at all and do not care about her happiness.
She read me this letter over the phone. The silence hung between us when she finished.
“Well, Mommy, say something!” she finally said, still in that fake-bright voice she’d used to read it aloud, the same tone of voice that had me gripping the phone so hard it was digging into my palm.
“Baby,” I said to her, tears rolling down my cheeks, but trying to keep my voice steady. “You know you can’t come home yet.”
“NOOOOOOOOOOOOOOOOOOOOOO!!!!!!” she wailed, pure anguish. “NO NO NO NO YOU DON’T SAY NO. SAY YES.”
“I love you, sweetheart,” I said. “I love you so much. I love you too much to let you keep hurting yourself. I’m sorry. You have to stay.”
“Fine. I hate you. Don’t bother calling.” She’d been wailing, but it snapped off like a switch, for this. I wasn’t surprised by that, either.
“I love you enough to let you hate me,” I said.
She hung up.
The first week was a lot of assessment and getting settled and meeting doctors and being observed by practitioners who you just have to hope have seen it all before. Chickadee has run hot and cold with us, all the way from shrieking, “YOU DON’T TALK! YOU! SHUT! UP!!” at Otto during family therapy to days on end of venom suddenly interrupted by a tackle of a hug and a whispered “Love you, Mama.” In-between, we’ve had periods of apparent normalcy and a day spent convinced that a dying boy was trapped on her unit and she had to find him. One nurse told me she’d had some “positive peer interaction” helping another girl settle down on the day after she’d melted down shrieking about how the nutritionist was trying to poison her by sneaking meat into the vegetarian food.
We don’t know how long she’ll be hospitalized. This kind of illness doesn’t lend itself well to the modern American HMO treat-n-turf model, unfortunately. We had a treatment meeting today in which it was concluded we’d meet again in 30 days. Before we left, I turned to the medical director and said, “There isn’t a single person at this table who thinks she’s going to be stable enough for release in a month, is there? This is just the protocol, to meet each month?” He hemmed and hawed a little. “There is much work to be done,” he conceded.
I seriously considered how to talk about this without talking about it. How could I gloss over the times I look in her eyes and don’t see anyone in there looking back at me? How could I accept and acknowledge that despite my best efforts, despite three parents who love her more than just about anything, despite being brilliant and accomplished and beautiful and funny and sweet, it appears my oldest child is suffering from acute mental illness? Maybe I could just say that—Chickadee is suffering from acute mental illness—and not share the details. Maybe that would be kinder, all around.
In the end, I realized I don’t know how to do that. I have never been more terrified in my life than I’ve been this past week. Along with a diagnosis (oh, yeah, not Asperger’s, though she did a nice job of snowing the first doctor) and continued hospitalization, my child has just won some lovely bonus prizes, like that she is now 400 times more likely to kill herself than someone without her diagnosis. Should I not say that? Should I pretend she’s having “a few problems” and that I don’t wake up in the middle of the night to cry for everything she’s lost, we’ve lost, we stand to lose still?
I have hung on the kindness of both strangers and friends who’ve survived this or a similar path. If someone else needs me to be the one who says, “Us, too,” then I want to be able to do that. And yeah, it’s a little selfish. I’m afraid if I don’t, I might stop believing this isn’t the end of this story. Hope is a precious commodity right now.
To add another layer of fun and games, it appears that my ex’s health insurance may provide some coverage which our policy does not. But the only way to switch insurance is to enact a custody change. What this means, moving forward, is still unclear. We have never worked better as a cohesive parenting team than we’re doing right now, all of us—unimaginable crisis for the win!—so it’s not as though giving up custody means something final and awful. But. Giving up custody. For now. For her. It makes sense. It is also traumatic, and leaves a lot of things up in the air for later. Assuming we get to later.
Logically, I know we are doing everything we can. I know this is not anyone’s fault. Emotionally, lord, I am inside-out and upside-down. I should’ve prevented this. Or fixed it once it happened. I am so angry, all the time, about EVERYTHING. I miss my girl. I miss her so, so much. I miss believing that this stuff happened only to other families or abused children. I miss before.
This is probably the longest entry I’ve ever written here, and really maybe I should’ve led with that, or said only that: I miss before.