If there were any doubts that our world has turned a little topsy turvy, just look at this last week’s news reports – earthquake in Virginia, followed by a devastating hurricane/tropical storm that hit the Northeast, and not really the coastal Northeast, but inland – that’s where the damage was the worst. My heart hurts as I look at the damage caused by the swollen rivers, and all of the destruction from the tornadoes and storm surge in North Carolina. I know this is not exactly new for the coastal states, but still, for something of that force to reach those most northern states, and that far inland, something is definitely not right. Then today, we’ve been rocked by our own quakes. Nothing serious, but the epicenter is just five miles from our house, so I definitely felt the largest, and have felt several of the aftershocks (so far, there have been ten quakes in all). Earthquakes have always been unsettling to me (no pun intended), just because of the unexpected nature of them. Not that hurricanes and tornadoes are less destructive, but at least you have a moment to get yourself evacuated. Here, we always say we don’t know where to put an earthquake survival kit because we live in a multi-story home, and we have no idea which level we’d be on or which level might collapse, so it’s a little tough to plan for it. I don’t know – there is just something really unnerving about being so powerless against a force so large. There’s a metaphor there about mental illness, how large it is, and the unpredictability of it, all of that, yes. Of course as I look at the weather center maps and see another tropical storm forming in the gulf, directly affecting Ailish, I have new fears, fears I hate to have when I’m 1500 miles away and there’s nothing I can do. But lately I’ve become familiar with being afraid of things I can do little about.
There are many conversations that I have had with people over the years since the girls’ initial diagnosis that have gone something like this:
Concerned person: But what will happen when they become adults?
Me: I don’t know. If I think too far ahead, I don’t want to get out of bed, so I try to just take things one day at a time.
This worked for me. Obviously, for parents of healthy children, you want to plan for the future – save for college, think about possible options, prepare them by teaching them how to drive, how to handle their finances, how to navigate the waters of living in the real world. But for me, other than trying to secure services for the girls before they turn 18, because they will be unable to do so themselves and, due to privacy laws, I may not be able to do it for them at that point, I haven’t been able to think much beyond that. In part, I admit it’s denial. But the other part is just the sheer weight of it all, the fear of what’s ahead – it just stops me in my tracks. So I tell myself to save that worry for another day, no sense in wasting anxiety over something I have no control over, something that is so far away.
But it’s not. Not anymore. And that fact was brought home to us quite abruptly at Brenna’s last IEP. I know I mentioned it before, but I say it again because it has had such an effect on all of us that it’s pretty much been the only thing any of us have thought about ever since. And thinking about it has been absolutely terrifying and paralyzing, all at once. It’s like this – I wake up, I do what needs to be done, like thank goodness Kieran has school now (which I will talk about in just a bit), so I get her off to school and then I go to the gym or I take the dogs for a walk, start a load of laundry, put the dishes away, attend to a swim issue if needed, and then, if there’s nothing else that is immediate, the thoughts about Brenna, the worries about how she’s going to handle this situation, they just creep in and render me utterly useless for pretty much the rest of the day. Until it’s time to get Kieran again, and take her to swim, and then we’re back to nighttime, which is kind of its own nightmare. Because the worst part about it is that Brad and I can see where this will most likely go – I mean, honestly, aside from the psychosis improvement (which is *huge*, I’m not saying it isn’t), the behaviors that led to her psychotic break, the issues we had that were constant sources of conflict and stress between not just us and her, but her sisters and her, society and her, all of those are still there. So Brad and I see that if she comes home, if we somehow manage to get her a job or she enrolls at the community college, the stress of one of those could very well send her over the edge again, and we might lose her completely. And here on the flip side, we have the staff telling her she’s an amazing kid (which she is), that she’s so smart (which she is), and that she’s totally ready to come home and be successful (which she is not). So who are the bad guys here? I know exactly what it looks like. And I know if she’s getting that constant message from the people around her that she must be feeling pretty abandoned by her parents right now, or at least that we don’t have a whole lot of faith in her. And that’s not it at all. We don’t have faith in her illness. We don’t have faith that her facility has properly prepared her for the world waiting for her. And we certainly don’t have faith that this world is going to be kind, gentle or understanding to her issues. So right now, I am getting some small sense of the debilitating anxiety that Ailish feels, because the anxiety of this impending situation has been really hard for me to handle. People always tell me how strong I am, and I always shrug it off. I don’t feel strong, I just do what needs to be done. And before, though it may have been hard, it may have been heartbreaking, or stressful, or exhausting, it was manageable. But this situation, and Brenna herself, who is as tall as I am now, and almost weighs as much as I do, this is not easily manageable anymore. And I honestly don’t know what we’ll do.
So we spent a good deal of time on the phone with my friend Lisa and her employer, a special education attorney, talking about the options we might have. We need to figure out the best way to get Brenna what she needs, but also to help her feel like she’s making progress, getting closer to home, release, success. Even though it looks on paper like she has all these credits, there are significant gaps, and that’s a major concern. And there’s the tremendously significant gap of the age she would be at graduation, 16.5, and the age where she would be eligible for services again, 18. Then there’s the issue that she did not pass the math portion of the California High School Exit Exam, and they can’t just waive that fact and give her a diploma without our permission. But we would not have known any of this without talking to them. That’s the really scary part – the whole team has been talking to us like this was all a foregone conclusion, Brenna would be coming home in May without a doubt. And until this week, we believed them. We thought we had no say in the matter, and there was nothing we could do aside from insisting that certain things be a part of her transition plan. I know of other parents out there who have had to deal with this system without having the benefit of an experienced attorney or advocate, who have had to accept the diploma with no questions asked, because the system makes you feel like asking questions is wrong, like saying, “Can we slow down for one second here?” is akin to saying, “I don’t want my child.” I absolutely want my child. I just happen to want my child to be safe, to be completely educated as much as she can be before she’s given a high school diploma, and I want her to be prepared as possible for the responsibility of living in the adult world. Of course we will be there to help her navigate, but if there are expectations that she act like an adult, she needs to know what those are and be prepared to rise to them as best she can. These are the challenges we are facing. So we still aren’t really sure how all of this is going to turn out. We have her annual IEP coming up in November, and I imagine a lot of this will be discussed then, but we may meet sooner if something comes up. I feel somewhat better after talking to Lisa, but it still hangs over me, because I know that regardless of whether it’s this May or next, it really doesn’t make all that much difference. Brenna’s adulthood is coming, and it’s coming fast, and I am completely unprepared for it. And *that* is the thing that haunts me. Because there is really nothing I can do to prepare for it. I can research here and there, but until she is here, we won’t know what specific services are available, we won’t know how she responds to taking one college course or two, we won’t know if there’s a group home she might be able to live in, or if she’ll live with us, or if we try that and things start to go bad, will we have to look for an apartment for one of us to live with her so that we can keep Kieran and Ailish (if she is back) safe? As much as we never wanted to do anything like that, these are the kind of options we have to put out there and mull over, because I can’t just think, “We’ll cross that bridge when we get there,” anymore. And just like the first time a psychiatrist broached the subject of residential with me, and I recoiled in horror at the thought of being separated from Ailish, that she would have to leave our home to get treatment, sometimes we have to do once unthinkable things in the best interests of our children. All of our children. I fully realize that some of this anxiety is useless – I don’t like to worry about things that are out of my control, and I don’t like to waste hours of sleepless nights over things that may or may not happen, but I feel like there is just so much about to happen, and I have to prepare somehow at least mentally for every possibility – even though I’m not really sure there is such a way to do that. Yes, you’ve all seen it now. I’m not nearly as strong as you think I am. I am officially having a moment. This has broken me in a way. And I sincerely wish I had a swim meet or two to distract me.
In the meantime…Kieran is well into her first two weeks of school, and to my greatest happiness and amazement, she loves it. She loves every bit of it.
I was not a fan of junior high – that is kind of putting it mildly, but we’ll just say I survived it. And I was concerned for her on a lot of levels. She was going to a huge school, knowing next to no one, switching from the charter school philosophy to homework-heavy, achievement-heavy traditional school, and having to juggle all of that with her swim schedule. Not to mention, we’ve had to work on her social skills over the last few years, because her anger and sadness over her sisters has definitely created some walls and some defense mechanisms when it comes to dealing with other people. So I had really been holding my breath, hoping that this was going to go well. Goodness knows, she was anticipating it with a lot of excitement – she bugged me about school supplies from the very first back to school ad that came out in July (well, actually she started the second she got out of school in June, but I told her I wouldn’t shop until the ads came out!) and she was doggedly relentless until the last supply was bought. We just went to her Back to School night to meet her teachers and see her classes, and I realized that this was really our first “real” experience with any of this. It was a bittersweet moment. But then we were swept up into the class descriptions, and as each teacher described the amount of homework they would be assigning, I realized that Kieran was right when she said she got the much-rumored “heavy homework” team. They cautioned us to be sure to check our child’s backpack and planner, make sure they were staying on top of things, log in to our account to check their test scores, assignment grades, etc., because the kids will say they turned things in and it was the teacher’s fault that it wasn’t graded. We had to leave a bit early to pick Kieran up from swim, but I told her later what the teachers had said. She just looked at me like I was a fool. “Mom. Mom. I will sit with you as you go through my electronic file. You know I have 100% in my classes. Let’s go look.” And she was right. And I can tell by going through her binders, she is so meticulous about her work, and honestly she’s going to have to be to stay on top of everything and swim at the same time. She has about an hour after school to do homework, but after swim, she has just enough time to eat before she should be asleep, and then she has maybe a little bit of time during a class called advisory where she could get some homework done. It is going to take a lot of focus and organization on her part to manage it. But I don’t doubt that she will. One other surprise – well, really, it’s not a surprise given who she is, but to my jr. high self, it’s a surprise – how much she loves P.E. They are on a block schedule, so she only takes P.E. every other day. Man, she *loves* her P.E. days! It’s just the brightest part of my day to pick her up from school, and she’s so happy right now. She really is confident and ready to take it all on, and she’s feeling healthy, and I’m so so thankful for that.
And here’s just a little thing to share – normally, I wouldn’t share this photo, but I am pretty sure it’s out there in the archives. These are anniversary photos – one from 2010, one from this year. I hate looking at the 2010 one, obviously, but that’s an 86 pound difference for me and a 35-40 pound difference for Brad (he’s not sure where he started). Pretty amazing!
One thing I’ve started doing over the last couple of weeks, and really it just started because Reilly was so restless one day that I thought fine, we’ll go on a walk, a real one, pulling and barking be damned. So I saddled up the dogs and off we went on my regular three mile loop. The first half mile, as expected, she pulled and barked and whined. After about a mile, they settled in. Well, actually, by then, Duncan was ready to call it a day, but he tried to keep up. By mile two, Reilly was panting and looking for the car. By 2.5 miles, she was sitting in the grass at stoplights. We saw another dog, and all she could manage was a halfhearted growl. By the time we got home, both of them collapsed on the floor for the rest of the day. I had done it. And it was good. The next morning, I went out for a jog, and as I got to the light where I decide whether to turn on a 5 mile course or a 3 mile course, I decided for the 5 mile. Then as I was running, I thought, you know, I should make this a little longer and see if I could actually do a 10K. Once I’d gotten home, absolutely exhausted, but thrilled that I could indeed run 6.5 miles, three of those at my best pace, I planned to spend the rest of the day on the couch. But then Kieran said, “Uh, mom? The dogs woke me up because they were crying at the door, and they cried the whole time you were gone.” Ruh roh. Seriously? Today? So then Kieran says let’s walk them together – okay, she’ll go with me. But she has a specific place in mind. She wants to go to the donut shop. I have no idea exactly how far the shop is, but I guess we’ll find out! As it turned out, round trip, it was 4.5 miles, so we completely exhausted the dogs again, and I did a new record of 11 miles in one day. And then I didn’t move for several days after that! Once I could walk without wincing, I did take the dogs out again, and we’ve done it several times since. Last night, we even took a walk with Brad, and the dogs loved being out there in the dark. I think it’s been really good for them – they don’t necessarily have to go every day, but maybe 3-4 times a week is good to get all of that Terrier energy out, and it gives me another way to exercise, and they are certainly not boring exercise companions! I know, Cesar, you were right all along. Exercise, discipline, affection, I know, I know!
As for Ailish, she is doing well. She is being the model client, which sounds really good, but this is the same pattern she always follows. She is so anxious about breaking the rules that she can’t act out. She looks so well behaved that they move her through the program. She never really addresses the underlying issues, and when she comes home, it all falls apart again. So we’ve been trying to get her to really think about what it might look like when she comes home, the issues that trigger her anxiety, her depression, and her OCD behaviors. It’s not an easy thing to do, because she is so happy, and once we bring these things up, it gets her so upset, but it has to be done to get her to think realistically about how it will be once she comes home. Her IEP is in November as well, and I fear that they will say she’s doing so well that she no longer needs such a restrictive environment, but I think that they’ve only begun to scratch the surface. As I’ve always said, I of course want them to come home, but I want them to come home and stay home. I want them to be home and be able to manage the stresses of real life – not that they have to be perfect, just that they are able to function and get through the day without meltdowns, or just to be able to get up and make it to school each day. That’s a really important part of this. So November is looking to be a big month around here. That and I’ll be running a big swim meet. Yup, no biggie. Actually, I’m grateful for that swim meet – in many ways, it will probably keep me from obsessing about the IEP’s too much.
So I don’t quite know what to say – on the one hand, I am so thrilled with Kieran’s grand new adventure in junior high, and how well she’s adapted to that. I’m enjoying my new exercise regime with the dogs, and glad that they are responding, like, well, Cesar said they would. Yeah, I know I know. I just wasn’t ready to hear the message or go on three mile hikes at that point. Now I’d love to get Reilly up to a jog, but I’m not sure how Duncan would feel about being left at home.
And yes, I know what this does – I see it even as I write it. This inevitably puts this in the position of saying look at all of the wonderful things that are happening with my golden child (the sun) while my other two children, the storms, struggle over here. If you hadn’t thought it yet, or you were ready to tear me apart, I’m just here to say don’t think I haven’t already done it about a thousand times during these hours of thought and worry and heartache. But here it is, in black and white, the truth that I come back to, and the thing that makes me keep going. None of these girls asked for their situations. We do the best we can with what we have. I believe that each of them in their own way are doing the best they can with what they have. But they have all been given different situations. For Kieran, it’s not simple. She’s not carefree. She’s driven by a force more powerful than I think the majority of her classmates or teammates can understand – she’s driven by the guilt of feeling the need to carry the ambitions of not just herself but her sisters as well. That doesn’t come from us, as we’ve always told her just be happy, just do your thing, but she has a drive that I have never seen in anyone so young. And I am not going to ignore or downplay her successes just because her sisters struggle. I don’t rub it in their faces, but it’s also not fair to her to ignore it. She deserves everything she has because she works incredibly hard to get it. What success she gets is entirely her own. I may be happy for her, but I don’t own it. And I feel the guilt constantly of trying to juggle the needs of the three, knowing that two need me desperately, but this other one, she needs me just as much, *for very different reasons.* And I’m not going to ignore her just because she’d survive if I did. To the contrary – I feel a deep need to protect her so that she can continue in her pursuit of those things that are so important to her. And Brenna and Ailish, they do have their moments of sunshine, which I celebrate wholeheartedly - I just have to plan for both sides of the equation.
Gratitude:
Whew – this is going to be a doozy, but I’m going to try!
- That Kieran’s surgery seems to have been a big success. She’s breathing much better and getting used to how that feels during swim and other exercise. She’s almost inhaler free, and that’s awesome!
- That the earthquakes today are just baby quakes – let’s hope they weren’t pre-quakes!
- Pumpkin Spice Coffee is back in my house. YES!
- Amazing friends who provide such incredible resources. Truly – I am so grateful for that. They bring me back from the edge so many times!
- That this journey of fitness has now brought me to a new relationship with my dogs, and I don’t mean that in some trite or stupid way. They had really gotten out of hand recently, and become a major discipline issue, and I was the one most irritated by them. These walks have not just tired them out and made them easier to handle, but it’s made us a team again, and I’m really grateful for that.
So I have few answers at the moment, just a lot of worry. I do my best to do something productive each day, to do something active, and to be grateful for the good things. But those hours of thought, I guess in many ways they are a lot like hurricane preparations, aren't they? We know that storms will hit, we just don't know exactly when, where, or how powerful they will be. And then sometimes, rather than a hurricane, sometimes out of nowhere, we get the jolting of an earthquake to shatter our relative calm. Ah yes, cross another career off my list - I would never have been a good weather girl either. I just don't have the stomach for it.
