This is what happens – so many days are so “ordinary” that you have nothing to say, or you get so caught up in the busy-ness that there is no time. And then one or two or three earth-shattering things happen, and you don’t know how to devote enough time or space to address them. It’s almost impossible to do – but I will try. First, we start with minutiae, because that’s what got me into this mess…
Hmm…the days, they just run on and on, in that way that summer days do. Except for us, they aren’t the same as for most families. They aren’t the same way as that one perfect summer I remember and hold dear – the one with many trips up to Santa Barbara, the soundtrack of Black Eyed Peas playing as we ate Farmer’s Market strawberries and played on the beach. That summer is one I will forever hold close to me, like a home movie I forgot to take, yet I can replay nearly every moment in my mind whenever I need to go back to a happy place.
This summer has been one of the busiest I can remember in a lot of ways, punctuated by swim meets and swim practice. The days started early – 5:45 on the weekdays to gather up all of the kids and get them across town and in the water by 7:00. On non-meet Saturdays, we had to be up at 4:15. No, that’s not a typo. It made for very early nights, a whole new concept during the summer, but not entirely a bad thing. While the kids practiced during the week, I worked out at the gym. Because of the timing of taking them, and the increasing temperatures, it just made more sense to take my exercise indoors, so I caught up on the Kardashians and Next Top Model while I worked out on the elliptical. (That wasn’t entirely my choice – there are only six channels available at the gym, two are sports, two are news, and the other two are Bravo and E – I don’t really find the news all that inspiring to work out to, and sports recaps aren’t that thrilling either, so shallow reality series it was! Some days, when I really didn’t feel like working out, it helped to be distracted by the notion that Kim’s butt really was fake)
Once practice was over and the kids had been returned to their homes, Kieran and I would hang out at home. If it were one of her double practice days, she would have no choice but to rest, a fact that irritated her to no end, but that was the way it was. If it was just a single practice day, we had a bit more flexibility. We might run errands or grab lunch at our favorite place, The Habit. Then we found a new place to stop by, a bakery just opened nearby, The Poached Pair. They make a new menu every day, full of wonderful goodies like scones, cookies, biscotti and cupcakes. I love that the cookies are small, so I can have just one for a taste of goodness, but not go crazy with it. The cupcakes are amazing, especially the frosting, which is not an overly sugary layer like so many frostings are. Kieran stalked the menu every morning to see what the offerings were, begging me to take her again.
When we weren’t in swim practice mode, we were in swim meet mode. We had an amazing meet in Santa Barbara on 4th of July weekend. Where last year’s meet was cold and foggy, this year’s meet was absolutely perfect – sunny and in the 70’s the whole time. Just the week before, we had gone up to Santa Barbara for Kieran’s first open water swim. She and several of her teammates had signed up for a 1K swim on a Wednesday night. When we left home, it was 100. When we got to Santa Barbara, it was 70, and the clouds were rolling in. By the time they started the race, it was 68 outside, and the water temperature was reportedly 10 degrees less. Everyone lined up on the beach, and the adults in their wet suits looked stunned as they surveyed these kids, especially the little ones (Kieran and two or three others looked comparatively much smaller than anyone else about to embark on this adventure) in just their swimsuits and caps and goggles. Two of the women in wet suits told Kieran and her teammate that it was okay to stop at any time, that they just had to signal to the lifeguard and they could get a ride back to shore. But I knew Kieran, and I knew she wasn’t about to give up, no matter what happened out there. Actually that was the part that scared me. Fran Crippen’s death weighed heavily on my mind as I took pictures of the kids and waited for them to race out into the ocean. That and the fact that 10 years ago, just a few thousand yards away, we had dipped Kieran’s feet into this same ocean. We had called it her Pacific christening. Funny the paths life takes, isn’t it? So then they were off, and with a leap, she was suddenly in the surf, and I was grateful that she had a white cap on, which made it easier for me to pick her out in the pack. The route of the 1K race was to swim out for some distance, then swim along the shoreline, then swim back towards the shore, then swim along the coast again. It sounded reasonable at the time until I realized that I could barely make her out, even with my camera zoomed out to 300m. I felt sick to my stomach, especially because I could see she was bobbing up and down at times, not moving forward, but just bobbing in place. I didn’t know if she was struggling or if something was wrong. I only knew that at that point, there was absolutely nothing I could do to help, I just had to trust that if she got into trouble, someone would see it and help her. After what seemed like an eternity, she finally got close enough that I realized what she was doing – to catch her breath, she would stop and do the breast stroke, which, at a long distance, in the ocean, looks a lot like bobbing. She would do a few strokes of breast stroke, then continue on with freestyle. Finally, there she was, emerging from the ocean, looking positively purple. Someone behind me said incredulously, “What is that kid doing swimming this?!” She looked pretty proud of herself! All in all, she may have been the last of her club to finish, but she did finish 16th out of 55 women, which is pretty amazing, considering. She’s looking forward to her next open water swim in September in La Jolla. It’s much shorter, which she finds irritating :), but it will be in warmer waters, so that’s a good thing!
From that meet, we went on to a meet two weeks later at a pool Kieran absolutely hates. It’s one of the newest pools available to our swim committee, and it’s absolutely gorgeous to look at. However, the kids do not enjoy swimming in it. It’s an infinity pool, which means there is no gutter, no edge, and it feels completely different to swim in, especially on the turns. It also has extremely high blocks for starting, so high that it can be disorienting when you go down for the start. So this pool would of course be the perfect pool for the last chance qualification meet, right? I should not have been surprised that Kieran added on her races, but I was disappointed for her because her first two races were the ones where she was closest to getting Jr. Olympics times. Her last race was the 100 back, which was not one where I expected much, back has been her nemesis all season, but I was thinking she might drop some in it. I watched her go out on the first 50, but I was working and someone asked me a question, so I didn’t see her again until close to the finish. I saw she’d added two seconds, but I was still trying to print out the results from the 50 meter events and I was busy at work when she appeared next to me, crying, with her towel up to her face. I thought she was just coming to cry about adding on all four events, and I did not have the patience to deal with that at that moment, but then she pulled her towel down and I realized what the real issue was – there was a small gash on her forehead but a much larger goose egg was forming. “What happened?!” Before I could get more out of her, her coach ushered her away for ice while I grabbed an incident form to fill out. I can’t think of things more fun than filling out a head injury incident form on your own child, but at least I know all of the information! So the infinity pool, with its weird edges, lack of gutter, and the difference in feeling, all combined to make it hard for her to know when to turn, and she turned way too late. She smacked her forehead on the wall. Two officials saw it, and then were shocked that she actually made it all the way to the finish. So she only added two seconds and didn’t even get dq’ed. That was pretty amazing, actually.
Thankfully, LeAnn could take her home right away. My initial plan was just to have her rest and take ibuprofen and put ice on it. But then I realized it was July 16. July 16 has not traditionally been a good day for us. That was the day I broke my ankle. It was the day I realized our bank account had been hacked. And I did not want it to be the day that she had a brain bleed and we didn’t realize it. So I called Brad and made him promise to take her to urgent care. She had x-rays to make sure she didn’t have a fractured skull, and though they wanted to stitch her forehead, she declined, not wanting it to keep her out of the pool. She said the scar would match the one on her eyelid. Final diagnosis, mild concussion. Of course, her first question? I can still swim tomorrow, right? The answer was yes, and yes, she did :)
After that, I was consumed by our big Junior Olympics meet. Since Kieran missed her qualifying times, she was able to help out in hospitality and at the snack bar, but she did get to swim a couple of time trials and swim on the relays. It was a five day meet, and the prep beforehand began five days before that, so my world became very small for about ten days there.
I finally emerged from the meet on Sunday afternoon, but there was still one day left of swim practice. When I started the car that morning for the car pool, it sounded kind of funny, so rather than go to the gym, I decided to take it straight to the mechanic. Thankfully another mom was handling pick up, so after I dropped off, I just jogged home. I was really hoping that it wouldn’t be something major wrong with the car, but of course, I’d just gotten paid for a huge meet, so it was the perfect time for something horrible to go wrong. I got a call a few hours later – the starting part was just the battery, no big deal. But had I heard a clicking noise when I turned? Yes… here we go. That was the axle, and the block. The whole rack and pinion system needed to be replaced. All in all, including one new tire which I also knew I needed, nearly $2000. Sigh… I agreed to the repairs as long as they could have the car ready in time for me to take Kieran to the surgery center the next day, because she was having her adenoids removed and her sinus cavity ablation the next morning. We picked the car up just as the place was closing that night.
It was a fitful night of sleep with Kieran, but finally it was morning and time to get ready to go. The three of us arrived as instructed, two hours before her scheduled surgery time, but for the most part, we sat in the waiting room until just a few minutes before her surgery was supposed to start. Still, I really liked the staff, and the way they dealt with Kieran. She was really scared of the IV, so they didn’t start it until she was out, which was nice. And they put a special root beer scent (her choice) on the mask. We thought it was going to take quite awhile, but it was just under an hour when they called us back to see her. She had a really hard time coming out of the anesthesia – not sick, but very dizzy and disoriented. They also said when she first came out, she was swimming, and she nearly gave the anesthesiologist a bloody nose! We brought her home and kept her stocked up on popsicles. She asked for soup and then angel hair pasta, so I thought she was doing pretty well, but by the morning of day two, she was feeling like a truck ran over her. This was going to be a few days before she would be herself again. We’re still not there yet, and we’ve gone through almost two boxes of popsicles, but she’s getting there.
So…that sums up this life here, that “tidy” little world we’ve been living in. There are two other worlds that have been not so tidy. Where to begin.
We had Brenna’s IEP on the 20th. This was supposed to be a continuation of her last IEP, and we were supposed to discuss whether to move her from her current placement. The placement and DMH seemed to be in agreement that they would only consider it if she would be moved to a step down facility. That idea seemed outrageous to me, especially considering she’d been suicidal twice that week. I understand that she may have gotten all she can out of their program, but I don’t see the point of sending her to a lower level program if she really hasn’t progressed to that yet. It was a very difficult conversation. And just when we’d realized that we weren’t going to get anywhere with this, the Director of Special Education started a line of questioning that stopped us cold. See, he hadn’t seen her file in a few years, and when he did, he realized she was missing a lot of pertinent information – transcripts, a transition plan, some really important stuff. So he asked how many credits she had. Everyone in the room was pretty stunned by the answer. Just to give a little reminder – Brenna is 15.5 right now. When she left for placement, she had just completed the first semester of her freshman year, and she had gotten two D- (I argued to the teacher at the time that he should have failed her on both of those classes if he felt that strongly, but he said, in his experience, “Kids like these don’t come back and get their diplomas.”) I complained, but this all fell on deaf ears. My biggest concern through all of this was that Brenna wouldn’t get a diploma at all. So. Imagine our great shock when they told us she only needs 30 more credits to graduate. Huh? This took some time to sink in. This was not counting the eight she would earn by the end of this summer’s semester, so really, she only needs 22. She would easily have this by June of 2012, if not sooner. Then, the Director asked if she’d taken the CAHSEE, the high school exit exam required by the State of California. Yes, she had, in March. Um…no one mentioned that to us either. But here’s the part that had not completely sunk in yet, because my first thought was relief that she would actually have a diploma, no matter how incomplete that diploma is. As much as I want to give Brenna credit, I also know that their standards for class are not the same as if she’d been attending high school here, no matter how much they might say otherwise. So my relief gave way to terror as I looked at the big smile on the face of the DMH caseworker and she said, “You do understand that once she has her diploma, all AB3632 services will be terminated, right?” I’m sorry, come again? So she’ll be a 16 year old high school graduate with no services, and basically no services available to her until she turns 18 and can go back into the DMH system as an adult. Back up the truck. Terror. Abject terror is what I felt. So then the Director says to the team, “I don’t see a transition plan in here.” And I chimed in, “Yes, I have been asking for that at the last two meetings.” And her residential team replied, “Well, we just thought we’d do it at her annual meeting in November, right before she turns 16.” Sure, if she still had another 18 months to transition, that sounds like a fine plan, but since she’ll only have seven more months, that does not sound like a good idea to me. She can’t just graduate on credits – she has to have life skills, she has to be able to get up in the morning, she has to be able to deal with a boss wanting her to do things she doesn’t want to do, she has to know how to ride a bus on her own, how to handle the everyday-ness of life. And when we get a call just a few days ago saying they had to restrain her because in a screaming fit of rage she broke the water fountain, all because she didn’t like the food they served that night, the whole idea of having her home for 18 months without a plan is very scary. My wonderful friend Lisa is on the case, though – if anyone can figure out a way to help, it’s her, and I’m hoping we can at least get a good transition plan that will help prepare Brenna for such a huge step.
As for Ailish, my Ailish who turned 14 on the 22nd. Her birthday is bittersweet, it always is, whether she’s home or away. When she’s home, I always worry she’ll crash because it’s not enough. But of course I miss not being able to celebrate with her. And I’m always thinking about the terrible anniversary of her first hospitalization just three days after her 6th birthday. But the good thing was that Brad was able to fly out for the weekend and celebrate her birthday with her. They spent time in Galveston and exploring the NASA Space Center (Ailish doesn’t want to admit it, but she thought it was pretty cool :) and all in all, it was really good that they had that time to be together. I think the hardest part for us is to see Ailish on the surface doing so well there, and yet we know that at some level, this is all a part of the front she puts on in placement. She has so much as said to us and to her therapist that this is what she does – she wants to be the good girl there, and this is what is expected, so this is what she does. But how can we translate that to home? We’ve already said how can we motivate you to wake up in the morning? She doesn’t know. “Why should I get out of bed if I don’t want to? What’s the point? What’s the point of going to school anyway?” When we mention that we have tried to give her positive reinforcement, she says no no no, she hates that! Yes, we know. We know all too well unfortunately. We ask how can we keep her from hoarding food in her room, we can’t replicate placement, there is no way to keep our kitchen in a separate building. She just becomes more frustrated. I am too. I am not angry with her, I’m frustrated with the disorder. I’m frustrated that she has to have such a high level of structure to be able to function without overwhelming anxiety. I’m frustrated that she wants a quick fix for all of it. I don’t think there are quick fixes for any of this. I think the only fix is for her to actually feel things, to actually have negative emotions and explore them with her staff in that safe environment, but she doesn't feel like she can because she thinks she has to be "the good girl." I’m frustrated that this seems to be a Groundhog Day version of mental illness, and it is exhausting.
Oh, and yes, our 20/20 story re-aired on Ailish’s birthday, which had an extra tinge of sadness, because so many of her successes were in the original story. I know a lot of that was edited this time, which made me feel a little better, but still, I remember all of that time that they filmed it – her choir performances, her junior high dances, she was so happy that year. I don’t know, it could have very well been the front that she later claimed it was, but she looked happy to me. One thing that I did find amazing was how many “real world” people saw it this time – the outpouring of support from people around us has been really wonderful. From the grocery store cashier to people in our swim club, it’s been really humbling and touching to know that others care so much. We really do appreciate all of the support – it means more than you’ll ever know.
On a global scale, two things happened recently which saddened me greatly. First, Amy Winehouse’s death, which of course did not come as a shock, but it still hit me hard. I’ve never been one of those people to worship stars, but when I hear about those who are struggling, and the ways that the media illuminates their struggles for their own profits, it bothers me a great deal. Actually, I still remember when Kurt Cobain died, I remember exactly where I was standing, in my office in downtown L.A., when I heard. I was in disbelief, so sad that his illness had overtaken him. I didn’t know at the time just how deeply that illness would touch me later. And this is what bothers me about Amy’s death – people are so quick to write her off as an addict. Ah, she was just a two-bit addict, she didn’t get help, it’s her fault. There is more to that story. In so many cases, addiction is just a symptom, it’s not the disease (which it is in its own right). I know I’m not a doctor, but by many accounts, Amy displayed all of the symptoms of someone with bipolar disorder, and her addictions were just her attempts to self medicate. She was incredibly talented, as are so many people with this disease, and it saddens me greatly that she wasn’t able to get the help she needed before it was too late.
This second story does not just sadden me, it horrifies me. It is exactly what I fear most as I look down the barrel of Brenna’s impending adulthood. Last month, not far from our home, Kelly Thomas, a homeless 37-year-old man with schizophrenia, was sitting on a bench, minding his own business, and was brutally beaten by several police officers while a crowd of people screamed at them to stop. Five days later, he was taken off life support and died. The story of Kelly’s life – of his family’s attempts to set him up in adult housing and keep him employed, of his issues with going off his meds when he felt good, of their fears of him dying of exposure in the streets – it made me cry. Then the video of the eyewitness accounts, which the bus driver was so smart to record, it made me physically ill. I know how Brenna would react if she were not on meds and several officers appeared, wanting to search through her belongings. I know she would respond by trying to get away. And that those officers just kept beating him, they kept using the taser gun, kept smashing his face against the sidewalk, it is sickening. On the Youtube page, someone commented that their friend in law enforcement says they’ve been told to say, “Stop resisting!” when they are beating someone, just in case there are witnesses around. That rings so true because that’s what Ailish said the residential workers screamed at Brenna while they were beating her, even though she wasn’t resisting at all. And the really scary thing about all of this, the part that brings this story right to the center of my heart? When Brenna was talking about suicide last week, she said to me, “I want to die, but I’m not suicidal. I couldn’t actually kill myself, I just want someone else to do it for me.” And all I could think was, that’s just suicide by cop. This is why sleep does not come easy.
Back to our up to the moment reality, Brad is in Colorado right now with Brenna and the rest of his extended family for a family reunion. When we originally planned this 18 months ago, this was supposed to be the first time that all of us, all of the kids were together in the same place. Unfortunately with Ailish so recently placed in Texas, she wouldn’t be able to be there. And then we purposely finagled everyone’s schedule to make the family reunion this week to accommodate Kieran’s swim schedule, but then the only day the doctor could do Kieran’s surgery before school started was the 2nd, which meant she wouldn’t be able to go to the reunion either. So it’s Brad and Brenna representing for us, and at least she can catch up with her cousins and enjoy the mountain air in Breckenridge.
I know I shouldn’t get too stuck on the future, because if I think about it too much, I just might not get out of bed at all, but honestly sometimes, and particularly now, with the possibility of the future being less than a year away, it’s really not the future anymore, and it scares me to death. Knowing that there’s a world out there that is unsympathetic to her issues, that there are people out there in uniform, empowered with weapons, who feel they can hurt her just because she’s disheveled or mumbling to herself or doesn’t act “right,” or just knowing that we have to find a way to give her a life worth living, something to want to fight for, that’s the part that weighs heavily on my heart.
I suppose it’s no wonder that some days it's the blanket of the little things that get me through the day. I know I can’t stay there forever, but some days I have to go there, just to get a little air.
