So right after I hit send on my last post, I got an email that my favorite Urgent Care doctor, pretty much the only Urgent Care doctor I trusted, had lost his wife and daughter in a horrible car accident the day before. His 5-year-old was critically injured, and his toddler was hospitalized as well. I was in shock. I remember him showing me baby pictures of the daughter he lost, years ago, when the girls were frequent fliers in Urgent Care. For a few years there, we were in there once a week with ear infections, UTIs and bronchitis. We joked that he was our primary doctor, because he was the one we saw weekly! He saw me for my DVT and told me to get to the ER as quickly as possible. I just saw him last month for my latest UTI, and we joked that it had been a long time since I’d been in there. I just can’t imagine the agony he is going through right now. I debated for a long time about whether to get a card - I wanted him to know that he had an impact on our lives, and how sorry I was for this tragically sudden loss, but I heard this information from the “inside,” as a friend of mine is married to our girls’ pediatrician. I didn’t want him to think it was weird that a patient knew about his private life.
Eventually, I decided to get the card - I had no idea Hallmark had cards for “sudden loss,” but I’m glad they did - the other cards just didn’t do justice. I dropped the card off at Urgent Care, and the receptionist gave me a bit of a strange look, but she promised to make sure it got to him. In the end, I decided it was worth it to let him know that he meant something to us, although I’m not sure any words right now would be a comfort.
Thursday, Brad took Kieran to swim so that we could get to the allergist. The doctor was absolutely slack-jawed at the improvement in Ailish’s eczema. I am too! He prescribed Clobetasol, which is a very strong steroid cream, and only to be used with really bad cases. But honestly, it works overnight. It is amazing how quickly we saw an improvement, and we just don’t use it unless Ailish’s skin gets really bad, and then we’re back to clear again. It was pretty funny to watch him - he said he was being very unprofessional, but he just couldn’t get over how clear her skin was. He said she made his week, which made her giggle. I was pretty impressed, too - we have tried an incredible assortment of creams through the years, without success, but this was the first one that truly made a dramatic difference. After the appointment, back to swim we went. Right as we walked up, Brenna called me on my cell. She was begging to come home for a visit. I know this sounds horribly cruel. I am well aware of what I must sound like - but she was just here in January, that’s only three months ago, and every single thing she promised did not happen. Now we have the added stress (for Brenna and for us) of Ailish in the house, and her promises mean absolutely nothing because she is powerless against Ailish’s manipulation. She promised, over and over again, that things would be different this time, but I tried to explain to her, at 13, things have much bigger implications. If she hurts one of us, she can be arrested, and I will not bail her out of juvenile hall. I’m trying to make her understand that she is not coming to a stable house - we are still trying to deal with Ailish’s presence, and now is not a good time for a “stress test.” But she was adamant that she could do this. I ended with a, “I’ll see what I can do.” I knew we were having therapy the next day, so I figured we’d talk about it more then. I looked at flights for June, but I’m just not ready to commit yet. Brenna’s DMH case worker will be out there next week, and she assured me that Brenna has to prove to us with more than a month of good behavior that she’s ready for a home pass, so I hope she’s able to assess the situation objectively. It makes me so angry when Brenna says things like, “Everyone here is telling me I just need to see home,” because I just think she’s been so manipulated by the staff. They want her out, so they are moving her through her paces, and she has no idea. Still, I ended the conversation feeling absolutely monstrous. How could a mother say, “You can’t come home,” to her own child? But I know it’s for many reasons - first and foremost, I don’t think it would be helpful for her to try her newfound stability (if that’s what it is, and it isn’t just a facade), on an unstable situation. Secondly, I am not in a place where I feel like I can handle all three of them at once. 90% of the time, Brad is working, which leaves me alone with the three of them. The last time I was with the three of them was May 2007, and it ended with me sobbing in the Wal-Mart parking lot in Texas.
After the phone call, I went inside the swim complex and told Brad about it, and he agreed that this is just really bad timing, and that Brenna was being manipulated into believing this was the best thing at this time. He left with Ailish, while I stayed, waiting for Kieran to finish up her practice.
That night, the girls were trying to prepare for “College Day,” the next day at school. Since we don’t have a steady supply of college shirts, the girls decided to wear their Canyons t-shirts, which are both a college and the aquatics club where Kieran swims. Ailish has a shirt, one we bought for Brenna originally to cheer Kieran on. Ailish couldn’t find the shirt, and she was convinced Kieran had it, although I was downstairs and had no idea this was going on. I could hear Ailish arguing with Brad, I could hear a lot of drawers being slammed, but I didn’t realize until 30 minutes later exactly what the argument was. The t-shirt was in the dryer, it had been the whole time - something Ailish would have known had she done her chore that day. But there you go. She didn’t admit her mistake, wouldn’t acknowledge anything. And that’s just as much the issue as anything else. Kieran ended up so frustrated, she climbed into our bed, buried her head and went to sleep. She didn’t want to be anywhere near Ailish’s room.
Friday was Ailish’s IEP at her Junior High School. Ailish is up right now - she is looking forward to Junior High because it will give her a chance to meet lots of new people. Me, not so much. I hoped she was so up that she didn’t see my panicked expressed upon witnessing the crowd of scantily dressed kids in the quad. (She was - she didn’t even notice). Once we got into the IEP itself, we were informed in a round about way that all the services that had been provided by our elementary district were pretty much being stripped. Homework was a required part of Junior High, transportation would not be provided, and she would be integrating for one class, which was an exploratory, but she would not get to choose her elective - it rotated every quarter. The schedule was mind-boggling. Though I understood the idea of 90 minute blocks of class, giving the students a chance to cover more classwork in a longer period of time, I did not understand why they had to rotate the classes. One day, the classes go 1, 3, 5. The next day, 2, 4, 6. The next day, 3, 5, 1. The next, 4, 6, 2. And so on. It’s hard enough to change classes, but to change schedules every single day? I thought this was a recipe for disaster. Given the fact that every single classroom had to have the schedule posted on its window, and four kids checked in with our teacher during the IEP, this was not something the kids could master easily, even in the best of situations. Thankfully, Ailish qualifies for adaptive P.E., so there is still a safety net in that regard, but the rest of it, yeah, I liken it to tying her to the railroad track. Just like the first round of IEP’s in her elementary school, we have to wait for her to crash before we get any more help. Since she was there with us (she’d been invited), I didn’t voice any of this, but boy, did I feel it. I realized, having taken away so many of the accommodations, that she could have done well at the charter school, but then again, I want Kieran to have a place completely separated from Ailish’s world. But trying to juggle their schedules is going to be tough. They both need to be at school and be picked up at the same time, and their schools are more than 10 miles from each other. Thankfully Ailish starts weeks before Kieran does, so we’ll have a chance to get her settled before we start juggling, but my mind is swirling. So no, for Ailish, she’s not disappointed, but that’s only because she doesn’t know any better. I won’t tell her for now - I couldn’t live with the months of anxiety.
Friday afternoon, Brad and I had therapy with Brenna and her new therapist. Again, we went over the issue of her coming home. Again, we listed the reasons why we thought this was a bad idea. Again, the two of them volleyed back why it was okay. I described the issue with the whole Ailish/shirt thing. I asked her what she would have done if Ailish had accused her of stealing. She said she would just ask Ailish to go through her drawers if she didn’t believe her. Ha! We did a bit of role play, and Brenna admitted that she would not react well to Ailish accusing her of stealing and continuing to up the ante until Brenna exploded. If it brought Kieran to the brink of losing it, I know exactly what kind of reaction it would get out of Brenna. The therapist asked me if I thought one of the girls (hmmm...wonder which one?) could be away at a relative’s house during the time Brenna visited. We might be able to work something out, but how does that reflect Brenna’s true progress if she’s not forced to confront the issues? But I don’t want her to confront it because I know that she’s not ready, and the consequences of that could be traumatic to everyone involved. It’s quite a Catch 22 - one that I think could be solved if we just slowed down, waited a little bit longer, but with the push coming from staff, Brenna thinks she “needs” to visit as soon as possible. It’s very frustrating. I am just going to wait until the caseworker calls me and gives me her assessment.
Saturday, Brad was nice enough to take the girls out for the day - they went to the original Tommy’s burger in Los Angeles, and then headed to Galco’s Soda Pop Stop, which is a very cool L.A. institution. We lived near there for nine years, and we never made it there, but I’m glad the girls were able to explore and pick out their own cool sodas. After that, he took them to the cemetery, which I wasn’t sure would go over well, but he wanted to show them his great-aunt’s headstone, which I thought was nice. For me, of course, the most wonderful part was the hours of silence. Of course to get to that silence took a lot of work - I told the girls they had to have their chores done before they left. Kieran pulled a lot of daily chores that week - walk the dogs daily, dishes daily, that sort of thing. Ailish pulled more of the big things, like vacuuming the stairs and cleaning the bathrooms. Some of those chores were supposed to be done on Friday, but Ailish hadn’t done it, so they had stacked up on Saturday. Kieran was finished in less than an hour, and even cleaned up her room. Ailish, instead, chose to complain loudly as she moved through her chores ever so slowly. She was getting more and more angry at Kieran (because it was unfair, even though chores are purely luck of the draw), so I decided to run Kieran to Marshall’s to look for new practice suits. Hers are reaching the point of sagginess from wearing out, and I wasn’t willing to spend $20-$40 on each suit. Marshall’s had the perfect suits, for $14.99. They had two suits I was willing to buy for 9.99, but Kieran wanted the $14.99 ones, so she was perfectly willing to pony up $10 to cover the difference. We came back from Marshall’s and very carefully explained that Kieran paid for part of it. Ailish will immediately take that as an unfair advantage if she thinks Kieran has something that she needs. With Kieran out of the house, Ailish seemed to speed up, so it only took another 45 minutes to pick out her outfit for going out. I don’t think my words convey the level of frustration, not just from me but from Brad, from Kieran, from the whole house, when Ailish blocks an outing like this. She knew she had all the power, and she was going to use it to her full advantage. Brad was hoping to get on the road by 10:00. It was 12:30 when they left, and even then, she didn’t do two of her chores - I finally decided it wasn’t worth it to punish everyone else. But even neglecting the chores, she deliberately took so much time picking clothing. And the more we comment, the slower she goes. She knows very well we can’t say, “If you aren’t down here by _____, we are leaving.” Most of the time, we are all leaving together, or we’re going to school, or something similar where leaving her behind is not an option. And if Brad had said fine, he’d just take Kieran, Ailish would use that against him (and Kieran) in a heartbeat. We would never live that down. We are all, in a sense, hostages to her plans. I’ve stopped talking about time in the mornings. Even though Kieran gets up on her own at 6:00, just to have alone time, and is fully ready for school by 7:30, Ailish hasn’t even gotten out of the shower by then. She finally comes down the stairs at 7:45, when we’re supposed to be leaving. She carefully, slowly, eats breakfast, takes her meds. Lately, we’ve been lucky to get out at 7:55. Kieran and I silently watch the clock, hoping that they won’t be tardy. It just frustrates me completely that she can still wield this kind of control.
Saturday, I also had the opportunity to help someone whose 7-year-old daughter was suicidal. She was an acquaintance of a friend, and I was happy to take the call. I walked her through the different hospitals, whom to contact, what to say, how to handle the admissions people and the insurance people, and offered to be a continuing resource if she needed it. All of us who are in the thick of it just keep saying, “There has got to be a better way! No parent should have to go through this alone!” We will get there - finishing my book is an important part of it. I’m now in the process of typing in my handwritten pages. That gets us to May 2005, which is when I started this blog. From the blog entries, I can reconstruct a lot of those years. I am, slowly but surely, making progress. But the book has nothing to do with me, or with money, or any of that. I just want there to be an open conversation about this - with Oprah, with the Today show, with whomever will listen. I want them to understand that these kids are really, truly ill, and that they and their parents need more support than ever. This is *everyone’s* problem, because without treatment, many of these children will end up in the justice system, a system we all pay for. A huge percentage of those incarcerated are mentally ill, and many of them commit crimes just to get the medical treatment. There’s the human toll as well. I don’t want my children responsible for hurting anyone else, and I can’t stop them by myself. This problem is so much bigger than we are.
Yesterday morning, I had my quarterly rheumatology appointment. We go over my latest round of blood tests, see if there are any med changes, etc. One thing, since at my last appointment, it seemed like all of my antibodies were “lying low,” (those things can fluctuate wildly from month to month), I decided on my own to stop taking the steroids. I figured I’d see how I did and go from there. My hands hurt more, my knee hurts, and if I spend any time in the sun, I’m done for the rest of the day, but I haven’t had the extreme exhaustion I’ve felt when I am having a flare. The bonus of going off the meds? I’ve lost 20 pounds without trying. Of course, I know those same 20 pounds will come back if I have to go back on them, but it’s nice to have my old clothes back for awhile. There are other bonuses, like not having calcium leeching out of my bones, but you know, those are unseen :) The one surprise was that the only blood test of concern was one relating to my kidney function. I just laughed - what else could I do? I told him the whole story, and he just shook his head. He asked me to follow up with my new primary when I see her, although I am just not sure where else she can send me on this road.
I just want to thank you all for your notes and comments. I know I sounded pretty rough last week, and honestly, most of this week was rough as well. But I think I’m beginning to find some footing again. The rest of the week is super busy, including Ailish’s Junior High Orientation tomorrow night, so hopefully that will move us through the week quickly. Kieran has a meet this weekend, which will prove to be tricky, I’m sure, with Ailish. Ailish’s Greek Festival is Friday, so maybe, coming off her high of a successful Aphrodite performance, she’ll feel strong enough to not need to be the victim. That’s the best I can hope for.
I hope you do get the book finished soon. I totally agree with you that we need to treat mental illness in children when they are younger so that we don't end up paying for them in prison, which costs so much more.
How in the world will you handle homework?
Posted by: Kim | April 28, 2009 at 03:59 PM
I frequently pop back and forth during my day and I wanted to say something. After reading the last comment that you deleted, maybe you should consider making this blog private and inviting readers to it.
Posted by: Kim | April 29, 2009 at 09:00 AM
Hi Kim,
I have considered that from time to time, but I don't want to exclude people who are struggling with this in their own lives, people who just email me to say thank you for writing about something they are afraid to talk about. I do try to write responsibly, to not name names or be too specific. I took that comment down because I believe it needed to be handled privately. I'm fine with rebuttal, but this was not the place for that specific one.
Posted by: Jen | April 29, 2009 at 10:58 AM
Fair enough. :)
Posted by: Kim | April 29, 2009 at 06:46 PM
Why the heck did I not know about that soda place in the 27 years I lived and grew up out there??? I LOVE soda. My favorite place in all of Disneyworld is the Coca Cola store at Epcot because you can get free soda from around the world!!! I am definitely checking that out on my next visit.
I hope you finish your book, soon, too. I have learned a lot from reading your blog.
Posted by: Robyn :) | May 04, 2009 at 05:13 PM