More than words

I didn't forget

Before anyone thinks I've pushed Brenna into a failure corner, I haven't.  Brenna is not a failure.  Brenna is acutely ill right now, and though I think I've become pretty good at dealing with bipolar disorder, this is a whole new level of illness that I was woefully unprepared for.  I have been fortunate enough to meet people who have been or are there right now, and they have been really helpful, but I think this has just opened up a whole new stage of grief for us.  My hope back in June was that we would bring Brenna home and we would all move closer to the "real" world.  While my vision of high school was not the cheerleading squad or the in crowd, somehow, stupidly I admit, I had hoped she would find her niche and make a go of it.  I never in a million years expected that we would be so far left of center at this point.  It's not her fault.  I know that.  It's the happenstance of puberty hitting at this precise critical moment, at a time when she was still trying to find her way, and all of it snowballed into where we are today.  I have not given up on her.  I just need to step back for a few days.  I need to figure out how I can help her in the best way without sacrificing the other four people in this family.  I have given up everything else - I stepped away from Girl Scouts almost completely (I am working on completely); I volunteer from home for Kieran's school (that's a required 8 hours/month); and, I found a low stress volunteer job for swim.  I have done what I can from here to conserve energy.  I just need to find a way to help her, but for the moment, I think maybe the best thing is to give us both a little space. 

However, this post is not really about Brenna.  I have received notes and comments since last night that I need to find some positive things to focus on.  And I do have some very important successes.

Ailish's transformation in junior high has been nothing short of amazing.  I was *so* terrified of junior high for her.  I just imagined her as the 4th grader who literally shooed everyone away from her, the one sitting in the back of her room, scratching her hands, the one who had huge meltdowns over the easiest of homework.  4th grade was the last real reference I had, and I was very worried for this new experience.  But she amazes me every day.  She looks so adorable - she works on each outfit until it is just right.  She is completely self assured, and thinks nothing of the junior high nonsense that reduced me to tears.  She is a very tough soul, and none of that fazes her.  She has friends, including such a good one, such a close one, they are little (literally) soul mates!  She got straight A's last quarter, even with homework every night, and, though she began the year with one mainstream class, and even that scared me, she is now in three mainstream classes, working to be in all six mainstream by the end of the year.  She has blossomed...in junior high!  I didn't even know that was possible, and I'm not talking about for her, I'm talking about for anyone! I am so thrilled for her, thrilled beyond words.  Every day, she does her homework without being asked.  She looks forward to school - even if it takes a stick of dynamite to wake her up :)  I am proud of her in so many ways.

Kieran loves school for the first time ever.  She wakes up eager to get there.  She loves her teacher, loves that she is learning things, she has just really found a good fit for her.  It is such a relief to know when I pick her up, I won't get the glum face.  Though she still isn't all that good at telling me what happened that day :), she does say she had great days, and that's all that matters.  At swim, she is working so hard.  90 minutes a day, five days a week.  I could never work out the way she does!  Swim is everything to her - she says when she gets in the water, she only thinks about the water, so it is her respite, and I am so grateful that she has it.  She works so hard at it, never complains, and is so focused.  I hate the word pride, because I think it implies that I had something to do with it, but, for lack of a better word, I am so proud of her.  And, as Ailish says, a little jealous.  We both wish we had that one singular goal that would block out everything else!

There are things to be grateful for, there are things to celebrate.  I think we all feel guilty for feeling good about anything right now, because Brenna is in such a bad space.  But it's important to remember this, because every victory is a step in the right direction.  I didn't forget, I just didn't want to stick Brenna "over there" while we are "over here."  It's a tough predicament, for everyone.

Little Earthquakes

November.  It is usually one of my favorite months.  In Southern California, November brings the first signs of cooler weather for us.  Normally, October is brutally hot here, with the Santa Anas not only bringing fire danger but unbearably high temperatures at a time when those of us who once lived in areas with seasons are expecting something much different.  I’ve lived in the Los Angeles area for 17 years, and I still expect something different every fall.  One of these days, you would think I’d learn.  But no, October is usually the worst month of all, so November brings with it a wonderful respite.  We can pull the long sleeves out, dust off our jackets, and prepare for the holidays ahead.  And November has what is normally my very favorite holiday – Thanksgiving.  I love Thanksgiving for many reasons.  One, it is a chance to bring the family together without any gift expectations.  Two, it involves hours of laborious cooking, and I *love* cooking the Thanksgiving dinner.  If anyone wants to bring dessert, I am down with that, because pie crusts and I do not get along, but the turkey and I, we get along very well.  Some butter sautéed with orange peel, fresh sage, thyme and rosemary, then slathered all over the bird in between the skin and the meat, and then the most wonderful gravy ever – gravy so good, my father-in-law once sat down and ate it with a spoon – gravy that makes me dance around the kitchen each time I taste it, gravy that takes almost as long to make as the turkey itself, yes, I love preparing that meal.  But as Brad and I were driving down to UCLA yesterday, we were talking about the holidays.  Before we’d left, we talked to the girls about when they would get ready for the night’s trick or treating, and neither one of them were all that enthused about going out.  Kieran had had a Halloween parade and party at school the day before, and Ailish had gone to school in her costume, participating in a costume contest, and then went to a Halloween party at school that night.  They were both a little Halloween’ed out.  We coaxed them into the idea, though.   But I also knew their apathy towards Halloween had less to do with the fact that they’d already celebrated than it did with the fact that we were all dreading the holidays.  This was supposed to be the first time in four years that we were all together for the holidays.  All of us trick or treating.  All of us sitting down together at the Thanksgiving feast.  All of us at home, in one place, for Christmas.  That didn’t happen for Halloween, and the girls (and we) expressed a guilty relief that that was the case.  They were very worried that if Brenna wasn’t in a good place, it would ruin their chances at having any part of Halloween.  But I made sure that even if we had to be involved with Brenna’s situation, the girls would not be affected.  Now that Halloween is over, and we look ahead to Thanksgiving and Christmas, I told Brad yesterday that I haven’t been in the mood to celebrate for years.  I thought it was because the five of us were not together.  I thought that once we were all together again, we would be able to celebrate.  But I’m not feeling it, and neither is anyone else.  I want to bring it back – I don’t want the girls to be denied good holiday memories.  But even Kieran, when asked what she wants for Christmas, says, very seriously, nothing.  “I don’t play with anything anymore.  I don’t need anything.  I really don’t want anything.”  Ailish already got her Christmas present, as it was wrapped into her birthday to pay for her laptop.  And Brenna, well, Brenna wanted a laptop or a camera, but if she is going back to residential, she won’t be able to have either of those, so we’re stumped on what to get her.  As for Brad and I – we haven’t celebrated Christmas for each other in years.  It took enough energy to muster up the spirit for the girls.  By the time we get to us, we just shrug and say maybe next year.  It has been very difficult to go through the motions over the past three years.  Our normal tradition of putting the tree up on the day after Thanksgiving has not been possible because we have been traveling to see the girls on Thanksgiving.  So we put it off until the next weekend, which seems like no big deal, but the whole ritual is something we’ve been doing since we’ve been together, and when you mess with 15-year-old traditions, even if it’s just a small delay, it is like a little earthquake.  It may not cause a great deal of damage, but tiny cracks form in the foundation.  As far as the tree itself, we haven’t used “our” tree since the girls left.  I couldn’t bear to up their ornaments if they weren’t here to do it themselves.  Instead, we got a slightly smaller tree and use a theme – decorations in aqua, red and white.  The girls were looking forward to our tree again, but now I’m not sure if we’ll be able to use it.  Another little earthquake.  Every year, we spend one whole day making sugar cookies, and everyone gets their own set to decorate.  It’s one of my favorite traditions.  And every year, the Friday that the girls get out of school, we go out to dinner that night, and then go look at lights.  We finish with hot cocoa at Starbucks.  Will we be able to do either of these things?  It seems much more uncertain now.  The cracks multiply.  I told Brad yesterday, we should do something to bring the spirit back.  But he replied, “Holidays are a way to mark the days in times of peace.  When things are going well, it becomes boring if we don’t have something to celebrate every now and then.  But we are not in times of peace.  We are in a crisis.”  I knew what he meant.  “We have nothing to celebrate,” I said sadly.  “Exactly.” We rode in silence the rest of the way to UCLA.

It’s been a rough week for Brenna.  Every day, as they decreased the meds she was on when she was admitted, she said the spirits were getting closer and closer to her, and the channels in her head were getting louder.  She was listening to music constantly to keep the channels quiet.  Tuesday night, when the girls and I went to see her, she was limping.  She said she had gotten really angry because a girl was mean to her.  The staff had to clear the day room, and she kicked the door for so long and so angrily that her foot was swollen and discolored.  The staff finally got her to take a medication to calm her down.  This had happened about an hour before we arrived.  Ailish and Kieran were irritating Brenna to no end, even though they really weren’t doing anything wrong.  They would move, and she would glare at them.  On my way out, I asked a nurse if Brenna had been looked at, and he said they were going to X-ray it in the morning.  I asked another nurse what Brenna had been given to calm her down.  Seroquel.  Okay.  I said good night.  Two hours after I got home, I got a call from a different nurse, telling me Brenna had been very angry that night.  I thought she was talking about another episode, but no, she was telling me about the one that had occurred five hours before.  She said she had been taken for x-rays, they would know in the morning if it was broken or not.  I was just so surprised that no one realized I had been there, I had seen it myself, and had even asked two different staff members about it.  Kind of scary.

The next day, Brad and I went down together.  Her foot was not broken, just soft tissue damage.  She was in a wheelchair.  She described to us in great detail what her spirits were like, and she said every time she got angry, the spirits broke through another level to get closer to her.  I didn’t know what to say to her.  I wanted to help her, but I had no idea what I could do to help.  I just listened.  It was also difficult because I was not feeling well.  I was getting another gall bladder attack.  For lunch that day, I had grabbed a pulled pork sandwich from the restaurant next to Kieran’s school, and after eating about a third of it, my stomach started to hurt, so I stopped.  But the damage was already done.  My stomach was hurting so much that I laid down on the way to the hospital, but I figured it would pass soon.  By the time we were in Brenna’s room visiting, the pain under my ribs and through my shoulder blades was coming in waves.  I was hoping to just ride it out, but soon the pain was like stabbing through my chest.  I knew it wasn’t really chest pain, it was more gall bladder pain, but I could barely speak.  Brenna’s time was up, and on the way down to the parking garage, I called Sandy just to make sure my pain felt like her gall bladder pain.  She said yes, but that I should just go ahead go to the emergency room while I was down there, since my own medical group had done their ultrasound and said it wasn’t my gallbladder.  We figured maybe it was like the car – it had to be “making the noise” when we went in to be able to properly diagnose it.  Sandy said she would look out for Ailish and Kieran, who were at home for this visit, since Brenna had not been happy with them the day before.

We checked into the ER, and though I listed gallbladder pain on the form, the triage nurse needed to get all of my history.  When I told her about my clotting disorders, and my previous blood clot, she asked if I had ever had a pulmonary embolism before.  No, I had not.  She said they would want to check that out before they went straight to gallbladder.  I said okay.  But first, we had to go back out to the waiting room.  The pain was so intense.  Brad tried talking to me, but I could barely speak.  It was such a hot, searing pain.  After about an hour, the nurse asked if I would be willing to sit in the hallway – I said sure.  I figured they would put me on an EKG and do a blood draw to check my Coumadin level and run a D-Dimer test, to see if there was a clot present.  Standard procedure when medical staff is dealing with someone like me is to run those tests, because a clot, especially one in my heart or lungs, trumps everything else that could be going on.  Considering this was my third time in this ER in a month, I was pretty familiar with the way things worked.  When Brenna was in the first time, when we were lucky enough to have a room, she was checked by a nurse four times.  When we were in the hallway the second time with her, a nurse came by immediately, told us she was our nurse, and she’d be back to check vitals, which she did, twice.  This time, a nurse glanced at me.  Then another nurse glanced at me.  I sat, still feeling the immense burning in my chest, under my ribs and through my shoulder blades.  After about 90 minutes, a doctor came by.  She said she wanted to get an ultrasound ordered for me, but you know, it’s night time, so it will be awhile.  I said I was just going to go.  She said no, I really should stay and at least be checked out.  She said a nurse was coming by “soon” to draw my blood.  We sat some more.  I was trying to gauge my pain.  The waves seemed to be lessening, like a lightning storm passing by.  I counted between the waves, just as I would while waiting for the thunder to roll.  After another 45 minutes with no nurse, there was a trauma call.  We were right outside the trauma rooms, so I got to watch the med students all giddily file in, catching up with each other about the work they were doing, excitedly waiting for news of the kind of trauma they were receiving.  It was a gun shot wound, and they were so excited.  Would they get to see a chest tube?  Oh, there were spray wounds – this would be good.  Then they learned the patient was just shot in the leg.  “Ohhhh,” they groaned.  “It’s not even critical.”  Still, they stayed to watch.  I knew by this point that there was no point in staying – I just waited for the right moment to bolt.  Obviously, since I am still alive to write this 4 days later, it was not a pulmonary embolism, but still, it was quite a wake-up call to me.  I am not fond of our local hospital.  They are not a trauma center, and I have been frustrated by the care I’ve received there before.  The only time I got my own room was when I arrived unconscious, and even then, once I regained consciousness, I had to fight to be admitted.  Still, every single time I’ve gone in since my DVT, they have been so cautious about it.  They make sure, even if the wait is long, that they take care of the important stuff quickly.  I don’t even make it out of the triage room without an EKG being run.  My blood is drawn the second I make it to the hallway.  This is UCLA we are talking about here – ranked number 3 in the United States, and best in the West for 20 consecutive years, and if I had been throwing a clot, I would have been dead in that hallway and no one would have noticed.  Considering the nightmare ER visit we’d had just a week before, it has certainly shaken my belief in the state of the care they give, but at least now I know their mismanagement of patients is not just limited to the psychiatric ones.

In car news, sometime during the week, I heard from Toyota.  They had replaced the transmission, gave it a test drive, and it still wasn’t working properly.  They had to order a whole new transmission and wait for it to come in.  Wow, when my curse works, it works really well!  The girls were happy with the rental, though, so they were thrilled!

Thursday morning, I woke up and got the girls going for school.  I took my shower, and when I came downstairs, I found Kieran sitting at the kitchen table, staring glumly into space.  “What’s up?”  “I’m just sad.”  “Why?”  “Well, I know this is the last day we could possibly see the Halloween stuff at Disneyland, and we have gone every year, and we were supposed to go, but then this stuff happened with Brenna, and I’m just sad we’re going to miss it.”  Ugh, just stick the knife in and *twist*!  I looked at the calendar.  It was empty, save for swim practice.  But she had a lesson and practice the next day.  If this was the most important thing about the holiday for Kieran and Ailish, I was going to make it happen.  I told the girls to hurry and get their stuff together, we were heading for the happiest place on Earth.  I made several caveats on the way down.  I didn’t know how crowded it was going to be, and I wasn’t going to rent a scooter, so we weren’t going to be able to stay all day.  We were just going to hit the most important rides.  They were just grateful to be going at all, so they happily agreed.  We hit all the big ones – California Screamin’, Midway Mania and Tower of Terror at California Adventure.  Then we went to Disneyland, where first up, we went to Space Mountain, which had a ghost theme for the holiday.  I was expecting more of a kid version of a ghost theme, but as soon as it started, I could tell this would be much scarier.  I suppose under normal circumstances, I would have just thought it was a little spooky, but the ghosts on the ride looked so much like the spirits Brenna described to us.  I understand, in very graphic terms, what had been haunting Brenna, and it made me so sad for her.  I could understand why this would be so difficult to deal with, especially if she felt like they wanted to make her into a bad person.  Kieran closed her eyes through the whole ride – I don’t know if she was just scared, or if she felt it too.  Ailish was unimpressed.  From there, we stumbled out into the bright light, and Kieran asked if we could sit for a minute.  Since her eyes were closed, she was very dizzy after the ride.  We decided we needed a lighter ride, so we headed to Alice in Wonderland.  After that, we hit Big Thunder Mountain and the Haunted Mansion, which is my favorite ride during the holidays.  The Tim Burton treatment is awesome, but it had an extra eeriness to it, considering what we’d been through with Brenna that week.  I wanted to go after Mansion, but Ailish begged for one more ride – Splash Mountain.  Ugh, okay.  With all of the rides crossed off, we made our way back to the parking lot, four hours after we started.  Not bad!  For lunch, I surprised them with Sonic.  There are only two Sonics even close to Los Angeles, so it was such a treat – probably more for me than them because I love the Cherry Limeades so much!  On the way home, we got stuck in the infamous I-5 traffic, so we didn’t make it back until after 5:00.  It was quite an unexpected day, but I was really grateful that I was able to give the girls the tradition that meant the most to them.

 

Friday was the big Halloween day at school for both girls.  They woke up early and dressed as quickly as they would on their first day of school.  I got to see Kieran in her Halloween parade, and then after picking her up on her minimum day, we had lunch at home before we went to her private swim lesson.  Ailish had to stay costume-ready after school since she had her big dance that night.  While I was at Kieran’s swim practice, I started to get another gall bladder attack, so as soon as she was finished, I went home and laid in bed for the night.  I thought about going to our ER, but then thought better of it on the Friday night before Halloween.  One thing I know for sure – the attack will be back, and unfortunately there will probably be many opportunities for me to go in and have the thing scanned.  Unbeknownst to us until far too late, Brenna’s Halloween was also on Friday.  I had bought her a mad hatter hat and taken it down the day before, but I was waiting to take her the jacket until Saturday.  The staff took the kids Trick or Treating through the hospital on Friday, and didn’t do anything on Saturday, so we missed the whole thing.

Saturday morning, I went to our swim club’s meet, but this time, it was not to take pictures of Kieran.  Because she’s in the higher group, Kieran wasn’t allowed to swim in this meet, but the club president wanted me to take pictures at the meet.  It was very strange to be there and not have a huge emotional stake in it.  I can’t remember a meet where I wasn’t just as tense as Kieran was.  But it was cool to see it from the other side as well.  After the meet was over, I came home in time to grab a bite to eat, and then we ran over to get my car and turn in the rental before we had to leave for visiting hours.

Yes, my car was finally finished.  After the second transmission was installed, they kept it another night to make sure it still ran well the next day.  I about died when I saw the final bill - $7300 – and thanked my lucky stars that it was still covered under warranty.  I mean, it should be, considering it is not even three years old!  But with my luck, I need to be very grateful!  Once you add in the rental fee - $300 for 8 days, Toyota had to fork out a pretty penny but thankfully she is running really well now, and I am just going to hope that it continues that way for quite awhile!

So, once we were back in the car, Brad and I made the long drive down to UCLA, which is when we had our holiday conversation.  It’s so sad to me, it just seems like every bit of desire I have to celebrate anything is gone.  We kept waiting to celebrate until everything was back to normal again, but I guess that’s just it – there never will be a “normal” again, and somehow, each year, we keep adding new layers of pain, new reasons why we need to wait, why we can’t celebrate.  I get the decorations out, I go through the motions, but it just seems like a shell.  There really is no meaning to any of it.  I think it’s why I find scrapbooking so difficult now too.  Scrapbooking the past is painful because it is going back to a way of life we don’t have anymore.  Scrapbooking the present is equally painful because we are in such survival mode, all of us.  I think back to previous years when I would take hundreds of pictures each month.  Now, unless it is an event, be it holiday, outing, or swim meet, I don’t ever bring out the camera.  We’re all just hunkered down, waiting for the storm to pass.  I’m not sure it ever will.

We arrived at UCLA to find Brenna’s room a disaster.  She had clean clothes in a clumped up pile on her shelves.  Trash and dirty clothes were strewn on the ground.  It looked familiar in a sense that her room at home looks like this, but it also looked particularly jarring against the hospital background.  I asked to take her Algebra homework home with me so I could turn it into her teacher.  He had sent me an email on Monday asking if he could send her some homework, so I made a special trip to the school on Tuesday to pick up her textbook and assignments.  I asked Brenna all week how the homework was coming, and she said it was all pretty easy, that she had covered some of the same material in her homeschool, that she was working on it.  So I wasn’t prepared for the familiar look on her face when I asked for the homework.  First, she tried to tell me she lost her notebook.  But I could see right through it.  She had lied about the whole thing.  Becoming angrier and angrier, she said she couldn’t understand any of it.  But when we opened up the book and found the assignment to be the properties of 0, asking questions like “3-0 = “ I knew that she hadn’t even opened the book.  Clearly.  There are many things that I have learned to tolerate that other parents couldn’t handle.  It doesn’t faze me when she tells me she hates me.  Doesn’t bother me when she says I’m not her mother.  It really doesn’t upset me when she hits me or in some other way attempts to hurt me.  I’ve learned to count to 10 when I see her room is a total disaster, and I ask myself, if it’s so important to me, why don’t I pick it up?  Many many things I have learned to put in “Basket C,” learned to overlook in the name of helping her.  But lying?  Nope.  It’s non-negotiable.  It’s “Basket A,” no question.  She knows this.  All of the girls do.  No matter how bad things are, if I know the truth, I can help.  If I know what I’m dealing with, I can work with it.  But lie to me, and we are through.  I told Brenna I would not tolerate this lying.  She said fine.  Leave.  So I did.  I took the textbook with me, because I wasn’t about to pay for the book after she destroyed it.  I guess this just goes back to the “spinning our wheels,” part that just kills me.  It is *so* frustrating to try to help someone who really doesn’t want to be helped.

We got home and tried to focus on Ailish and Kieran.  They got dressed, and we headed out for trick or treating.  They both looked so pretty, and still so innocent.  It was hard this year to make sure they had anything available to them that didn't cross the line - it seems like there are so many costumes designed to be revealing, even for young kids to wear!  Trick or treating amongst teenagers talking on cell phones *while* trick or treating or wearing extremely revealing outfits, the girls got a lot of compliments about how beautiful they looked!

 

 

Brenna is in a tough spot at the moment.  She has been put on a new medication, which could help with the hallucinations.  I have heard from others it could also make her homicidal, suicidal, more depressed, or put her in a mixed state.  She is in a mixed state now, although I don’t know if the drugs could work that quickly.  I have no idea when she’ll be home, or for how long.  There’s just no saying how long the insurance company will allow her to be there, or how long she’ll make it before she has another violent meltdown.  I hope that she can be home long enough to get the school testing done, because at this point, her hospitalization is the main hold-up for the IEP process. 

There are parts of me that hurt so much for Brenna.  I know she doesn’t want to be in this place – the emotional one, not so much the physical.  I honestly don’t think Brenna cares all that much where she is physically.  But the emotional one must be difficult.  I can only imagine how scary it must be to feel that you are being pursued by demons.  But there’s another part of me that is angry with her.  There are parts of my own health that I cannot control, and even if they aren’t demons, they are unbelievably frustrating.  I have no idea when I wake up if this is going to be a day filled with pain, if I’ll be hit by a Lupus flare, or a migraine, or another gall bladder attack.  There are some things I can do to try to manage these issues, but some parts of it are completely out of my control.  I just have to give myself a little space, try to live with it as best I can.  But whatever I can control, I work really hard to do so.  I refuse to give in and let my body win.  I refuse to give in and let this sad feeling take over.  Even if I can’t quite muster the joy for the season, I can still take delight in smaller things – in celebrating Ailish’s huge victories in Junior High, in giving Kieran props for all she’s done in swimming, in very small comforts like pumpkin spice coffee, egg nog French toast, Sonic cherry limeades, cooler days that let me bake, which I love to do.  I do everything I can within my limitations to make this a life with purpose.  I feel like Brenna’s given up already.  Some of it, I know, is because of her disorders, but they are a tangled mess of disorders, as the doctors have told me repeatedly in the last month.  I get that, but I think there’s still a point where the disorders stop and there is that part of her that really just doesn’t want to put out the effort.  There’s nothing here for her, and even if she isn’t suicidal, she is certainly bent on making sure her life has no meaning.  Some days, I can drag her, kicking and screaming, to the help that she needs.  Others, I just can’t do it.  I can’t keep working harder than she does.  For this moment, it’s up to her.  She has to decide she wants to try – when she does, I’ll be here, waiting.

Roll With It

I’ve been dreading writing this.  But here we go.

Sunday, we did get to the pumpkin patch.  This is the same farm we’ve been going to since Brenna was a toddler, so it has a sentimental attachment.  However, over the years, it went from being family-owned to University-owned, and even with the local Rotary club taking over, it has suffered immensely.  The pumpkins were scarce and covered in blemishes, the corn maze was a trampled mess, and the trebuchet wasn’t nearly as exciting as we’d hoped, because most of the pumpkins refused to be demolished, even after being hurtled hundreds of feet.  Getting there had been exhausting, mostly due to Brenna refusing to do the simplest of chores before we left, so the destination did not really deliver considering the effort it took to get there. 

 
 

Still, since we were so close to Grammapoppa’s, we decided to stop by for a visit.  There, the girls told them all about their Halloween costume ideas, which got Gramma thinking.  Ailish wants to be a Southern Belle, and though the dress in the package was perfect, she wasn’t too fond of the hat.  Gramma had the perfect hat, and the perfect gloves, to go with the dress.  They just happened to be the same hat and gloves she wore to our wedding!  With those pulled out, it was time to bring out costume jewelry, other hats from Gramma’s days working at the Chicago Tribune, and oh so many fun memories.  The girls had such a blast.  Things like this are not possible with me – I kept very little of my jewelry from the 80’s, and I wear next to no jewelry now, so this was like a fantasy moment for them.  I guess Kieran makes Gramma pull her jewelry out every time she visits, and she likes to hear her tell the stories about wearing them over and over again.  It’s memories like this that make me so happy we live near enough for the girls to visit with Grammapoppa regularly. 

 

It was nearing dinner, and Brad still had work to catch up on since we had that whole Friday car incident, so we piled back into the car for the drive home.

Monday, we had Brenna’s appointment with her psychiatrist.  I had been in contact with him, sending him e-mails about Brenna’s combative behavior, and he had added Seroquel, another anti-psychotic, to the mix.  It was a tight fit Monday afternoon, because it was at 4:40, and about 10 miles from our house.  10 miles of stop and go traffic at that time in the afternoon.  I just hoped I would make it back over the hill in time to pick Kieran up from swim.  Unfortunately, the dr. was running behind, so we didn’t actually get in to see him until after 5:00.  I knew we weren’t going to make it in time to pick her up.  We were 10 minutes late, but Kieran didn’t mind – she hung with her friends.  Funny how I worry and fret over so many things, but the kids barely notice!

On Monday, I had also called our home school district to find out how we could handle an IEP for Brenna involving the Department of Mental Health.  The district person called on Tuesday to tell me that Brenna had to be re-enrolled at her high school so that she could have the IEP.  Reluctantly, I realized that was the only way we could get the help we needed, and I pulled her from the home school program L.  Tuesday, Brenna and I went back to her high school and re-enrolled her.  She would start school again on Wednesday.

Tuesday night, we had a family session with Ailish’s therapist.  Ailish and Kieran were kind, but honest, when they tried to explain to Brenna how difficult things had been recently.  Brenna became enraged.  Her eyes glazed over with a murderous glare.  I honestly believe if the therapist hadn’t been there, Brenna would have lunged across the room and attacked us.  I could feel that we were feeding into her paranoid delusions, because I was on the couch, and Kieran and Ailish were clinging to me as they spoke to her, while she sat across the room in a chair by herself.  But I couldn’t push the girls away – they were so scared of her in that moment, and so was I.  The therapist tried to talk Brenna out of her moment, but she would not be swayed.  She swore up and down that we all hated her, that everyone hated her, that she was all alone in this world.  It was not an easy session, by any means.  I was even more concerned because we were supposed to meet up with Sandy at Sams Club as soon as the session was over.  Brenna was not speaking to us – she was a glowering ball of fury, but she was completely silent.  It was a very uneasy ride.  But within minutes of seeing Sandy, she turned giddy, pretending to be a spy.  We wandered through the store, trying to pick up items for the ceremony, and an hour later, we’d made our purchases and said goodbye.  I had managed to communicate with Sandy just how scared I was without the girls realizing it.  As soon as Sandy was out of our sight range, Brenna turned furious again.  I texted Ailish and Kieran during the ride home, telling them they had to go along with whatever I said because I was afraid for us.  The ride home was so tense, so filled with this ball of anger sitting in the darkness.  Once we arrived home, I was so scared.  I was afraid she was going to lose it, just like she did the last time, but Brad wasn’t home this time.  He was still two hours away.  Kieran and Ailish huddled together in our bed while Brenna went to her room.  She sat in the darkness, with the light of the computer monitor illuminating her face, and glared in the direction of our room.  I had not been that scared for us in a long time.  At least she took her meds.  While the three of us were holed up in our room, I asked the girls if they were scared of Brenna.  Kieran said she was terrified.  Ailish shrugged and said she wasn’t.  I asked why not.  She shrugged, and said, “I guess it’s like that book, ‘The Outsiders.’  Once you’ve been to jail, nothing scares you.  You’ve seen it all.  I could take her.”  Wow.  Underneath that petite little thing is such a strong girl.  Finally, Brad made it home, and I could relax enough to let Kieran and Ailish go to bed in their rooms.

The next morning, I took Brenna to school 30 minutes early, as the registrar had instructed me to do.  Still, they didn’t have her schedule ready (and I knew it would be the exact same schedule she’d had before), and wouldn’t be able to handle it until after 8:00, so Brenna and I had to wait it out at Starbucks and Office Depot.  I took her in 15 minutes after school began, and what do you know, it was the same schedule.  Thankfully, Brad was able to take both Kieran and Ailish to school, because if he hadn’t, they would have definitely been late.  I got home with enough time to tackle the IEP request and a few chores before Ailish had to be picked up because she had a minimum day.  After picking her up, we went with Sandy to the Italian place to order food for Kieran’s troop’s bridging ceremony on Saturday.  Standing in the deli made us hungry, but we didn’t want to have Italian since we were going to eat so much of it on the weekend.   Instead, we decided to hit our favorite Chinese place, Mandarin Wong.  I knew Ailish was anxious about this choice.  She is terrified of nuts, and, to be fair, Chinese places are notorious for using peanut oil or including nuts in their dishes.  But I promised her I would ask, and reminded her there was soup and rice and other things I was sure she could eat.  I could tell she was very nervous.   I asked the waiter if they used peanut oil – he said no.  I asked if there were nuts in the appetizers, no.  Nuts in the soup?  No.  Nuts in chicken lo mein?  No.  She took a deep breath and said okay, we could order that.  When the food came, she was very apprehensive.  She still refused to eat the appetizers, but at least she ate the soup, and when the lo mein came, she first picked at it, then when she realized she could still breathe, she realized how good it was and ate it up.  I was really proud of her – it sounds so simple, eating lunch, but facing her fears was so huge.  She even said later that she wanted to go to Mandarin Wong for her birthday!  Success!

Wednesday night, while I was out with Sandy trying to gather up more bridging ceremony supplies, Ailish told Brad that she had to reveal a secret about Brenna.  Brenna had told her that Reilly was communicating with her, and that she helped her make decisions.  She sat up all night, talking to Reilly, checking in with her about what she needed to do the next day.  But she didn’t want Ailish to tell us about this because she couldn’t trust us.  Wow.  It seemed like we’d gone from just tantrums to full blown delusions.  While Brad was home receiving this information, Sandy and I were discovering that my car was making all sorts of new noises, none of them good.

Thursday morning, we got a taste of just how hectic our days would be.  Brenna needed to be at her school by 8:01 a.m., and she was relatively close to Kieran’s school.  Kieran and Ailish both start school at 8:45, but Ailish’s school is hindered by traffic for most of the morning, due to being at the dead end of a road that has an elementary school, a junior high, and a high school within a quarter mile.  Did I mention the planners must have been brilliant to do that?  Anyway, we got Brenna dropped off just in time, then dropped Kieran off a few minutes earlier than usual, and then I got to Ailish’s school a little too early – the traffic was still pretty heavy.  Amazing what five minutes can do.  Still, I got all three girls dropped off, and then had Brad follow me to the mechanic.  By the time we got back, there was very little time before I had to pick Brenna and Ailish up – they both had minimum days.  I did have a few minutes to call UCLA.  I was very concerned about her new delusion.  If she couldn’t trust us, that meant we were the enemy.  That scared me – a lot.  I left a message with the previous doctor that handled her case, and I also called the direct admit line, and left a message with them.  It felt kind of silly, calling when she was in school, probably having a good day, but I just felt like we were headed for disaster.  Brenna was in a great mood when I picked her up.  We went straight from her school to pick up Ailish, and then went back home to have lunch.  Everything seemed to be going well, until I got the call from the mechanic.  There was definitely a problem with the transmission.  Thankfully, it was covered by my power train warranty, but it had to be taken to the Toyota dealership to take care of it.  We figured it would only be a half hour to pick up the car and drop it off at Toyota, so we asked the girls to stay in their respective areas and we’d be back shortly.  By the time we got to Toyota, Ailish had called.  Brenna went after her, trying to bite her.  Ailish had fought back, hitting Brenna on the arms, because by that point, Brenna was straddling her.  I told Ailish to go to our room and lock the door, but Brenna had followed her in.  I had Ailish put me on speaker phone, then asked Brenna to leave the room, but she refused.  I told Ailish to go to the bathroom and lock herself in.  I couldn’t believe we were in this situation.  In the meantime, Brad was out with the Toyota mechanic, on a test drive so he could show the mechanic what noises we were talking about.  I was so frustrated.  I needed to be at home, but instead, I was instructing Ailish how to take care of herself while I waited for Brad to get back.  While I waited for him, I left two more messages at UCLA.  We raced home to rescue Ailish, but she was really nonchalant about the whole thing.  I had to pick up Kieran and drop her off at swim, so Brad stayed behind with the other two.  The whole time I was taking Miss K to swim, I was thinking about Brenna, and what to do.  I left two more messages while Kieran was at swim.  Finally, right after I got Kieran home, I made contact with someone at UCLA, who said there was a bed available, so we decided to take her down.  This time, I left Brad behind with Ailish and Kieran.  There was no point in bringing both of us – Brenna was willing to go, and I didn’t want the girls to be thrown off on a school night.  Brenna and I made it to UCLA at 6:55 p.m.  We checked in, and she spoke to the triage nurse.  When the nurse asked if she was planning to hurt us, she said, in a flat tone, “Maybe.”  The nurse made quick notes and advised us that we were not allowed to leave the emergency room.  Brenna was being, “detained.”  Two hours later, I decided to give Brenna her medications.  It was nearing her regular bedtime, and I didn’t want her to get out of control.  As the medications began to take effect, she curled up on the floor of the ER in front of the TV and fell asleep.

30 minutes after that, a nurse came out and asked if we would be willing to be examined in the hallway, because they knew she had a bed with her name on it, but they didn’t have any exam rooms available to treat her.  I said fine, I just wanted to get her expedited.  I woke her up, and we stumbled to a gurney.  There were three of us in the hallway – Brenna, and two other psych consults, two adults.  We waited for hours while the regular doctor examined us, and then the psych consult finally arrived.  I was irritated because he consulted first with the two adults, which easily took an hour.  I supposed I would have spoken up, but Brenna was completely out by this point, and I had my computer, so I was just in a waiting game.  The doctor explained to both of the adults that he wasn’t sure there would be beds for them, but he was going to try to get them.  He put them both on 5150 holds – the abbreviation for the mandatory 72 hour hold when someone is a danger to themselves or others.  But they still didn’t have any beds.  My frustration was growing, because I knew that Brenna had a bed.  She was all set, all he needed to do was clear her for admission.   But the hours dragged on.  He didn’t even begin to examine her until after midnight, more than four hours after we had arrived.  He asked her if she felt like harming anyone, and she was completely drugged up, so she just moaned.  I don’t know what he took that for, but rather than committing her 5150, he said she could only be voluntarily committed.  This should not be such a distinction, but unfortunately, when it comes to our insurance company, it is.  They are much more willing to pay for a mandatory hold than a voluntary one.  The doctor was extremely condescending to me, but I did my best to make it through his interview.  He agreed to admit her, and left “for a few minutes” to write up his orders.   We didn’t get anyone to move us up to her room until after 2:30 – nearly 8 hours after we had arrived.  The nurse upstairs was very nice.  She said they knew Brenna was there from early on the evening, and they kept calling downstairs to find out where she was.   This was so frustrating to me – how nice it would have been to skip all those hours, or to maybe do a direct admit during business hours had we been able to get ahold of anyone during the 9-5 day.  All in all, I made 10 phone calls to UCLA that day, and no one called me back.  It wasn’t until after business hours, after 5:00, that I reached a human, and I was able to secure a bed.  I learned from the nurse that they had *four* beds available.  We could have come in so much earlier.  Although I was glad she was safe, it was frustrating on so many levels.

Friday morning, Brad let me sleep while he took the girls to school.  I didn’t quite sleep in enough before the Toyota dealership called.  The rep called, and in primetime game show fashion, told me the news about my car.  “So we dropped the pan.”  “Yes?”  “And there was a lot of metal in it.”  “Okay?”  “Which means you need a new transmission.”  “And?”  “It will be covered by Toyota.  So you’ll get a rental car.”  Crikey, we could have said that with far fewer pauses!

Brad took me to get my car rental, which incidentally happened to be my exact same car, same color, just three years newer.  It took long enough that I needed to pick up Kieran from her minimum day soon after. 

I did get a chance to talk to Brenna’s new doctor, and she seemed willing to entertain the idea that these were some pretty psychotic things going on in Brenna’s life.  This was good news because I learned in the ER that Brenna’s only information from her last admission was that she had Intermittent Explosive Disorder, which I didn’t agree with at all.  The new psych. was more willing to look into everything that had occurred in the time that Brenna had been out of the hospital.  Her first recommendation was to stop the Seroquel, which she called a very expensive sleeping pill.  I will meet with her on Tuesday, so hopefully that will be a productive meeting.  Let’s just say I’m cautiously optimistic.

Ailish had her psychiatric appointment on Friday evening, which was difficult, because Kieran needed to get to her Girl Scout meeting, and I needed to be there to help her.  We were practicing for the bridging ceremony, so this was a crucial meeting.  I’ve also been trying to extricate myself from the troop, and I was hoping this would be my last meeting as a leader.  Ailish’s appointment went well, and we tried to quickly make our way back home, but that was easier said than done given the rush hour traffic.  Brad picked Kieran up from swim, and then dropped her off at the Girl Scout meeting before he drove to UCLA to see Brenna.  I made it back just in time to get to the Girl Scout meeting.  We practiced our lines, and had them down perfectly, but it occurred to me during our last checklist check that I didn’t have the final confirmation and access code for the location where we were planning to bridge.  I tried to make several contacts, but couldn’t get anyone to respond.

The next morning, I woke up with a horrible headache.  I scrambled to try to come up with a solution for the bridging ceremony, but with no one contacting me, and no other possibilities for a ceremony, we were forced to cancel.  I was so frustrated with the whole situation.  But I was also not feeling all that great, so I took most of the day to rest.  That night, Brad and I left Kieran and Ailish at home to visit Brenna at UCLA.  She seemed okay, although she did reveal to us that the therapy dog that had visited that day was communicating with her.  I don’t even know what to say when she says those things.   She seems quite earnest about it, so I know I’m not supposed to laugh, but it’s so hard to go along with her on that ride. 

Today, we had Kieran’s swim banquet, which is a yearly event to commemorate the swimmers’ accomplishments.  We had decided long before that we would just go with Kieran – the plan was to leave Brenna and Ailish at home, and then during the last week, I was more and more concerned about leaving them alone.  I had considered getting a sitter to make sure nothing happened between Brenna and Ailish.  With Brenna at UCLA, Ailish was fine at home.  It was interesting to compare Kieran’s score (which is compiled by calculating the number of races times the place the swimmer achieved in that race) to the other girls in her age group.  Considering the group she was in last year, she did really well.  I was happy that we were able to give her that time to focus on her.

Tonight, as I’m up well past my bedtime, I’m not sure what’s keeping me up.  It should prove to be another interesting week, but that seems so stupid to say.  I am wondering if Brenna will be home for Halloween, if the doctor will be able to stabilize her, if we will be able to come up with a better solution for her.  Also, how Ailish will do at her Halloween dance, how Kieran will do this week at her swim lesson, when my car will ever get repaired and if I will be able to trust it again…so many things going through my mind.  I don’t know how the week will go.  It’s a waste of time to even ponder it – I should know by now that as soon as I have expectations, they will change, so I should know by now to just roll with it.  I’m going to try at least.

Spinning our wheels

To say it has been an eventful week would be redundant, but it truly has.  I’m backing up to Monday, though, where it all begins.

Kieran woke up with a bad headache on Monday, so I decided to keep her home from school.  While she slept, I had to run a few errands, so I was at the grocery store when I got the first call from UCLA.  The med back-up doctor was concerned about Brenna’s erratic heart rate and some “tics” she had, such as tongue chewing and the restlessness in her feet.  She said she felt Brenna would benefit by a reduction, or complete elimination, of her Abilify, which is her anti-psychotic.  I was a little dumbstruck.  She was admitted because of a psychotic episode, in what world did it make sense to not have an anti-psychotic?  I told her that was fine, but that I would not allow her to be discharged without a replacement medication.  I then asked if our insurance was going along with this, because I couldn’t imagine, after 9 days, that they would be too happy that they would want to change her medication now.  She said they were talking to them, and that she’d get back to me.  I got off the phone, and I felt like I’d been punched.  It was a complete surprise that this was their answer to the problem.  I was also concerned that this was just a maneuver to get the insurance company to extend Brenna’s authorization.  If they were adjusting medications, and she was potentially unstable, maybe they’d be more willing to cover it.

Just three hours later, I received another call from UCLA, Brenna’s therapist this time.  Apparently, the insurance was no longer willing to pay, so we needed to come and get her as soon as possible.  I expected this call to come eventually – it always does.  It was just, coming so soon after this new plan, it was quite a surprise.  I asked, what would happen to the Abilify then?  “Oh no, we’ll just keep her on the dosage she’s on.  We wouldn’t want to take her off at this point.”  No, indeed, we wouldn’t.

When I told Kieran Brenna was coming home, she was nonplussed.  This may have been due to her illness, but still, she just seemed rather unaffected either way.  When I told Ailish after school, however, she was quite upset.  I was not expecting such a strong reaction.

Brad picked Brenna up on his way home from work.  By the time I had heard the news, I had a chicken soup simmering, and a sick girl at home, so I really wasn’t able to rush down and get her.  She was happy to see her dogs.  We sat down to a nice dinner, all five of us, and that was a good thing. (As an aside, I happened to look up the side effects for Abilify.  It listed only one of the side effects that the doctor seemed concerned about; however, when I looked up Depakote, the mood stabilizer that was just increased for her, every single side effect was listed.  Hmm…)

By Tuesday, Kieran felt well enough to go back to school, even though she still had a headache.  Brad went into work early, so I dropped Kieran, then Ailish off and returned home to Brenna, who was still sleeping.  She spent the day trying to get caught up on schoolwork.  We worked until the afternoon, when it was time to pick up the girls, then drop Kieran off at swim.  Once we picked Kieran up, she asked us to drop her back at home to wait for Brad to get home from work, and then Brenna, Ailish and I went to a support group meeting.  Usually, I leave everyone at home, but I knew that Brenna and Ailish could not be alone together, but when I tried to just take Brenna, Ailish wanted to come along as well.  Thankfully, a few more kids were there, so the girls got a chance to spend time with other girls with similar issues.  For Brenna, it was a lightbulb moment.  The girl she clicked with, immediately, has paranoid schizophrenia.  The two of them bonded almost instantly, and as they shared the things that scared them, the things that angered them, the things that challenged them most, it all fit together.  Brenna was so excited to tell me about it later – not just because she found someone who completely got her, but that she felt like there was a word for the way she felt.  Even with a bipolar disorder diagnosis, she still didn’t feel quite like she fit into a world.  It was very interesting, and even though it’s not a formal diagnosis, it does put several things into perspective.  She can’t be alone because she’s convinced that someone is after her.  She is constantly anxious about what she says because she is afraid she’s going to say the wrong thing and everyone is going to hate her, she thinks everyone is looking at and laughing at her at all times.  It was very enlightening to hear all of this.

Thursday afternoon, she had a chance to have a playdate with her new friend, and again, it was wonderful to see her click with someone so well.  She and Ailish had such a great time, and I honestly thought we were having a really good day.  Until dinner.  There were plenty of leftovers , and I was exhausted, so I had told the girls they were on their own for dinner.  Brenna chose to make queso dip (velveeta and salsa) for the second time that day, and Brad objected to that.  He asked her if she could eat something more healthful.   For whatever reason, that completely set her off.  An innocent comment turned into more than two hours of restraining her.  Brad and I took turns as we became more and more exhausted.  Her sisters were terrified.  The dogs were barking.  She was screaming.  It was just an awful scene.  I still couldn’t grasp how such a good day could turn so bad so quickly.  Eventually she calmed down enough to go to bed, but we were spent.

Friday morning, I was looking forward to Brenna’s first therapy session with the doctor we’d had so long ago.  I was hoping she could help Brenna sort everything out.  The session seemed to go well enough, and we were scheduled to be back in the same office for Kieran at 1:00.  After the session, I took Brenna with me to run a couple of errands.  We stopped at Marshall’s, where I bought her two new pair of jeans and a peacoat to go with her Mad Hatter hat.  I wanted to get a coat she’d be willing to wear after Halloween as well.  We went back home so that Brenna could get a few school tasks done before we had our busy afternoon.  We picked Kieran up at 12:30, and then I thought we’d make a quick stop at Wendy’s before we went to therapy.  From therapy, we had to go straight to Kieran’s private swim lesson.  From the swim lesson, we needed to pick Ailish up from school, and then get Kieran back to swim practice.   Busy afternoon was an understatement.  We first parked, but then walked in to see that there was a huge line from the high school lunch crowd.  I thought okay, it will be easier to go through the drive-thru.  I went around to go into the drive-thru line, and then I started to have car trouble.  At first, I thought I had pulled in wrong and we were up against a curb.  It resisted when I put the gas on, and then suddenly it jerked forward.  I put the car in reverse and it did the same thing. Ack!  I only have one phobia, and it’s car failure.  I was scared to death if I drove another foot, I was going to ruin my transmission forever.  Don’t panic don’t panic don’t panic.  All the while I’m repeating this to myself, Kieran and Brenna are having a running conversation about what they’re having for lunch.  I called my roadside assistance, who told me it would be an hour before a tow truck would get to us (ACK!), then we went in and ordered, even though I had absolutely no interest in lunch whatsoever.  I ran over to Starbucks so I could log on and try to see if I could rent a car.  I had way too many places to be to not have a car.  I couldn’t make a reservation for anything with less than a two hour window, so I was still in quite a pickle.  It was Alysha’s birthday, so Sandy was out of the area shopping with her.  Brad was at the office.  I called him, and he said he was on his way, but on a good traffic day (ha!), it would be at least an hour before he was in the area.  What to do, what to do.  I called Sandy, apologizing profusely, and asked if maybe her mom could at least get Kieran to her swim lesson?  She said Mark was home, so we called him and he was happy to help us with rides.  The tow truck showed up only 45 minutes after I called, so that was good.  He started up the car and gave it a spin around the parking lot – of course, it was in perfect condition.  He said maybe I just needed a 30,000 mile transmission flush.  He offered to drive behind us as we made our way to the automotive place, so if I broke down somehow, he would be there to tow us.  We made our way six miles across the valley to the mechanic without incident.  I dropped the car off, and Mark came to get us so we could get Kieran to swim.  In the meantime, I texted Ailish and asked her if her friend’s mom could take her home.  Brad had already encountered one major accident, and was way behind, so I knew we weren’t going to make it to her in time.  Mark picked us up, and dropped us off at the college.  Kieran at least made it to her swim lesson – the highest priority of the day.  I had to go through a lot to arrange that, and I didn’t want to mess that up.  Brenna and I set up shop, figuring we’d have to wait out the whole lesson, the hour in between the lesson and practice, and then practice itself.  Thankfully, Brad arrived at the college around 3:30, more than 2.5 hours after he left his office.  His drive home included the bad wreck with the CHP cruiser, a panel truck that burned to the ground and a semi with two completely blown tires, their steel-belted wreckage strewn all over the freeway.  Yeah, it was a good drive home.  We took Brenna and Brad home, then Kieran and I headed back to swim practice.  Just after it got underway, I got a call from the mechanic.  They ran it through several tests, gave it a good drive, and still couldn’t find anything wrong.  I felt stupid for having put everyone through such an ordeal, but still, if I hadn’t, I guarantee they’d be rebuilding our transmission right now!  I dropped by the house, picked Brad up, and then he drove me to pick up my van.  When I asked the mechanic how much, he told me no charge.  I was stunned.  Seriously?  They spent three hours on my car.  I was more than willing to pay for it.  He said no, they’d checked out the transmission and fluid thoroughly, and there was nothing wrong – it wouldn’t be right to charge me.  So for those out there in my area, R&S Automotive is awesome.  I will be going back there again – just hopefully not soon!

By the time Kieran and I got home from swim last night, I was exhausted and ready for bed.  The Dodgers had already won, and I had another killer headache (which I’d been battling for several days).  I made chicken fried steak and mashed potatoes.  The five of us sat down for dinner, and then once it was done, I headed for bed, while Brad directed the girls on clean up.  Apparently, this time, it was that he requested Brenna get the recycling.  She took a plastic bag and shredded it to bits, screaming and stomping her feet all the way.  I just didn’t have the heart to argue with her.  I guess Ailish didn’t either, because she took the recycling out without us asking.  I would have told her no, had I seen it, because I don’t want Brenna to ever think that throwing a fit gets her out of her chores.

This morning, Brad took Brenna out to run an errand as soon as she woke up.  He thought she could use being out of the house more than anyone else.  They ran an odd assortment of fax machine, printers and computer monitor to the e-waste facility, then they had breakfast at McDonald’s.  Ailish and Kieran had a leisurely breakfast and played on the computer.  I told them as soon as Brenna got back, we were going to pull for chores again.  I thought maybe all of this angst had to do with the fact that nothing was structured, and even though we normally pulled for chores on Sunday, there were a lot of Saturday chores, and we would be better off if those chores were delegated properly.

As soon as they got back, we sat down, and even pulling the chores, Brenna was irritable.  She didn’t even get the majority of the “bad” ones, although she did get dishes all week.  Not a great chore, but it wasn’t bathrooms.  Still, she wasn’t happy that at that very moment, the dishwasher was full of clean dishes, and the sink was full of dirty ones.  While she angrily unloaded, she screamed at her sisters.  Somehow this ended with Brenna in her room, screaming at us that we hated her, that she didn’t want to be here (although I have no idea what “here” means), and then she destroyed everything she could in her path.  She tore apart storage containers, magazines, books, punched the wall, and did her best to destroy a wooden chair in her room.  She got one arm of the chair off, and used the stump of it to carve deep grooves into the seat.  The whole meltdown took another three hours.  Eventually, she calmed down, but by then, I sent Brad to take care of it. I just couldn’t deal with another moment of it.  He has made her, step by step, clean her room.  I say step by step because she kept coming in our room, saying she was done, and yet, only one small part of her room would be clean.  I just kept sending Brad back to tell her what to do next.  Tomorrow, we had semi-planned a trip to the pumpkin patch in the afternoon, but both Kieran and Ailish asked me separately if we could go without taking Brenna.  They are just so worried about her having a meltdown and ruining their outing.  The whole point of this trip was to do something that we haven’t been able to do as a family in three years, and yet, it most likely will be a nightmare if we try again.

This week has been an incredibly long, incredibly frustrating one.  Today is also the three-year anniversary of Ailish’s entry into residential.  It’s a reminder of how far she’s come, and she really has come so far.  Starting Monday, she’s going to be in a mainstream English class, which means she’ll be 50% mainstreamed.  Hopefully next, she’ll be able to mainstream into P.E.  We’ll see how it goes with Math and Science, those are the last two core classes she has to conquer.  I am *so* thrilled for her, so happy that she is able to enjoy junior high.  It has been such a huge accomplishment for her.  Still, three years later, I see how Brenna has essentially gone nowhere.  I would say she’s been spinning her wheels, but it’s not really accurate.  Everyone around her – from Brad and I to all of the medical and mental health professionals she’s come into contact over the last three years – we’ve been the ones spinning our wheels while she doesn’t change.  She is unable to learn from past experiences.  That is not my opinion – that is the opinion of the very first person to evaluate her, and it has been echoed over and over again since then.  How hard do we fight for someone who doesn’t want us to fight for her?  How hard do we work for someone who refuses to work with us?  I don’t know what the answer is – I only know that we can’t continue on as we have.  Maybe new medications will help, or a new school, or, ugh, a new placement.  I don’t know what the answer is, I only know that *this* is not working, and the whole house is suffering with her.  I just wish I had the slightest inkling of what would help.

Two Worlds

10/8

Day 6.  It has been a long, draining week.  Each day seems to take a week to get through – I think mostly because everything is so compartmentalized.  I have my regular day, a day that involves dropping Kieran off at school, trying to get a few chores done, making phone calls, etc.  Then I pick girls up from school, take Kieran to swim, take Ailish home.  Normally after swim, we would head home, make dinner, settle in for the night.  This week, as the day has stretched into evening, instead we think of Brenna.   Whether we’ve made the trek down to UCLA, as the girls and I did on Tuesday, or I did myself on Wednesday, or we know that someone else is visiting, like Brad did on Monday, or Grammapoppa did tonight, she is never far from our minds.  How quickly we became accustomed to her presence here, and how much we miss her already.

For the most part, Brenna is enjoying her stay.  There is a lot of art therapy, so she’s enjoyed the opportunity to make new creations, whether ceramics, metal work, or sewing.  She loves the food, and has enjoyed the tours of the campus.  It has been a very nice break for her in many ways.  She was in a good mood when Kieran, Ailish and I went to visit Tuesday night.  But within just a few minutes, she became annoyed by her sisters.  I reminded her that this was what real life looked like, and she wasn’t pleased.  It’s hard, because a part of me wants her to have a nice facility.  So many of the places we’ve seen over the years are quite sad – run down, literally beaten up by all of the destructive behaviors that have gone on within their walls, and lacking any sense of compassion for the patients.  I have always said the childrens psychiatric ward should look just as nice as the regular pediatric ward.  With UCLA’s new facility, I am getting that wish.  The rooms are beautiful.  The food is good.  The staff has been unfailingly polite and kind.  They allow the girls more freedom than I’ve ever seen before – no one searches my purse, they let her have her Zune, they let her have her toiletries without keeping them locked up, it is pretty amazing.  She has all kinds of art therapy opportunities – she’s sewn a pillow, did an etching in metal and attached it to a wood block, made a coil pot, and made a good deal of drawings.  It’s very peaceful and restorative.  And it’s a good thing.  However, there’s that nagging feeling I have that Brenna would be perfectly happy with the idea that she would just stay there forever.  With no real attachments except to the dogs, I worry that she might find this very comfortable.  Of course, it isn’t her call – it’s not even the doctors’ call.  The only determination of how long she’ll stay is how long the insurance company will pay.  But we’ll get back to that.

10/11

Wednesday night, with Brad working from home, I went to see Brenna alone.  The girls were happy for the break, and I think Brenna was too.  We chatted about nothing, and watched the Dodgers play the Cardinals for the NLDS championship via my phone.  Not quite as exciting as watching it on TV, but it had a special importance.  Three years before, nearly to the day, Brenna and I were at Dodger Stadium when the Mets swept us out of the playoffs.  She was there with me as I cried – not for the Dodgers so much as the idea that I had to stop preoccupying myself with baseball and start thinking seriously about the deterioration of our family.  We are quickly coming up on the anniversary of Ailish’s admittance to residential – October 17, and it is a sobering reminder of where we’ve been as a family and how much further we have to go.

 

Thursday, I had a meeting with Brenna’s team.  Brad had to stay home again because the afternoon timing of the meeting meant someone had to be around to get girls from school.  Sandy, thankfully, picked Kieran up and dropped her off at swim, but Ailish needed to be taken care of, so Brad worked from home so he could take care of Miss A.  I didn’t hold a great deal of hope about this meeting – I long ago learned that neither of the girls’ diagnoses are black and white, neither are simple to treat or understand – but I was hoping to hear more about a plan for discharging her.  I was quite surprised, though, when I discovered this was just a meeting to gather background information.  Couldn’t this have been done over the phone?  I was more than willing to give them every bit of background information they wanted, but I had never heard from Brenna’s therapist, and I was irritated that they would insist I drive all that way just to give them background info.  More insulting, I think, was that they spent the majority of their time asking about *my* history, not Brenna’s.  Even if I had had the most horrible, abusive life (which I didn’t), it has nothing to do with the fact that Brenna is dealing with mental illness, and not just one, but two or three or maybe even more.  Yet, the “team,” which consisted not of an actual medical doctor but just the therapist and the social worker, spent a good majority of our hour together focusing on me, and I just couldn’t understand it.  What was the point, exactly?  Finally, the social worker asked me what we were expecting from this hospital stay.  I said honestly, I wasn’t expecting a whole lot.  I just wanted some containment, possibly a medication adjustment, but I didn’t hold out any hopes for lasting changes.  The two of them breathed a huge sigh of relief.  The social worker finally spoke.  “I’m so glad you said that, because we just aren’t sure what we’re going to be able to do from our standpoint.”  Wow.  Now *that*, I was not expecting.  At 3:00 on the dot, the social worker sighed and said we needed to conclude our meeting, that our resident had to be off and working with her other cases.  The social worker said it would be really nice if Brad could be a part of the meeting.  I replied that yes, it would be nice, but given the hour of the meeting, there was no way he could be there and have our other two daughters taken care of.  They said how about Tuesday, 10:30?  I said sure, but I didn’t think Brenna would be in the hospital that long.  To which the social worker replied, yes, that was true, there may be a point when she will call me and tell me Brenna needs to be picked up from the hospital.  I knew that already, I was just surprised by their general message.  I was so grateful that this wasn’t my first time on this ride – if I had been, I think it would have been crushing.  There was no sense of help or hope whatsoever.  It was basically a wasted afternoon, save for the few moments I did get to spend with Brenna after the meeting.  I made my way back home, and was happy I got back in time to pick Kieran up from swim.

Since I had been down there earlier in the day, Brad asked his parents if they could visit Brenna that night, and they were happy to oblige.  It’s nice to have others who are willing to visit her – I never want her to feel alone, although I did notice out of all the girls on her ward, there are only two who receive regular visitors.  It’s just really hard sometimes to navigate the traffic, to mentally compartmentalize our days into two halves – there’s the “regular life” half that includes school and swim and errands, and there’s the “hospital life” half, which means we eat dinner on the run and make our way through the traffic, frantic that we won’t get there in time.  It’s exhausting, not just from a physical standpoint (which, in and of itself, is a challenge, because I’ve been fighting off a Lupus flare and cluster headaches since that first sleepless night on the 2^nd/3^rd), but from an emotional standpoint as well.  To go back and forth between these two worlds is jarring.  Not to mention, it is difficult under any circumstances to get Brenna to be talkative, to engage with us, but under a pressured situation where we have one hour to visit, her one word answers can be particularly frustrating.  So it was wonderful that her grandparents were able to make the visit, and we could spend some time at home, trying to keep our family life alive.

Friday was a very busy day.  I had Kieran’s early day, so I had to pick her up at 12:30, and from there, we had errands to run and things to do until it was time to pick up Ailish.  Once we dropped Kieran off, I had to take Ailish to the mall to buy new long sleeved shirts.  Our fall has come early this year, much to my happy surprise.  I’m almost afraid to say that, for fear it will awaken the Santa Ana winds and ruin it.  But both Kieran and Ailish needed new clothes for the cooler weather, and while I could take care of Kieran’s earlier in the week, Ailish had too much homework, and I wasn’t able to get to it until Friday afternoon.  I was worried it might take us hours to shop for her, and I only had 90 minutes before Kieran’s swim ended and we had to head for her Girl Scout meeting, but Ailish was amazingly decisive.  We walked into Macy’s, and she pointed out four shirts.  She didn’t want to try them on, she didn’t want to mess with it, she was just ready to make the purchase.  Wow!  We still had time for pretzels!  We got some cinnamon ones, and then I dropped her off at home before picking Kieran up from swim and racing over to the next stop.

Thankfully, since I had to be at Girl Scouts, Brad was able to visit Brenna after work Friday night.  He got home just a few minutes after we did.  We had to get Kieran ready for her swim meet the next day.  5:00 a.m. was going to come very quickly, and we had to have everything prepared.  I hardboiled some eggs for her, and tried to get her snacks together before we headed off to bed.

At 5:00 a.m. the next day, I woke up, got us moving, and the three of us were on the road by 6:00.  Ailish was spending the day at home, which was good for Kieran, because she has been worried about Ailish being at her meets, being jealous if she does well.  I was a bit worried about Miss A being alone for that long, but she was insistent that she would be fine.  I knew for at least the first several hours that she would be sleeping, and that was a good thing.  Kieran’s meet went okay – she took an astounding 41 seconds off her 100 yard medley time, but she was disqualified on her turn from breast to back.  It was disappointing, but knowing what she is capable of is heartening.  She has not only a 100 IM at her next meet, but also a 200 IM, so we are looking forward to the next one.  She swam three more races – 50 free, 50 breast and 100 back, and did pretty well.  She took half a second off her free time, established a good time with her 100 back, and matched her 50 breast time.  Still, it wasn’t an easy meet – it was cloudy and cold, and we were all worn down by the week.  After her last race, we packed up and drove towards UCLA, stopping for a Cuban lunch in Encino.  It is the best Cuban restaurant in Los Angeles, and yet, it doesn’t begin to touch Denny’s Latin Café in Key Largo.  And *I* make a better café con leche!  From lunch, we headed to Brenna’s visiting hours.  The four of us had a nice visit, but Brenna was itching to get out. 

A new nurse introduced herself to us as her primary nurse.  I had never heard the term, which she found surprising.  Honestly, I hadn’t heard from anyone at UCLA, save for the one short phone call with the med back up doctor and the social worker who set up the earlier meeting.  We sat down with the nurse, and I tried to plead my case that Brenna was not going to get anything more from this hospital stay, that we only expected her to be contained until the episode passed, we weren’t expecting more from it.  But then she completely surprised me by saying that she got Brenna’s whole deal, that Brenna seemed very skilled at giving evaluators the information they wanted without revealing anything about the real her – wow.  It was mind-blowing.  I appreciated that someone was able to see through the veil, however, I wasn’t sure how much good it was going to do at this point.  The fact is, Brenna doesn’t learn from these experiences.  Long ago, a doctor told me she couldn’t, but I didn’t believe him at the time.  I think I’m finally realizing that it’s true.  It’s not intentional, it’s just the way it is, but it makes treating her all the more frustrating.  The nurse went on to say that the team would meet on Monday and make a decision then about how much longer they planned to keep her.  I’ll just stop here and reiterate – we’ve spoken to one nurse once, a brief (less than 5 minute) conversation with a med back-up doctor who stressed she was only available for medication questions, and a meeting with the social worker and therapist that mostly focused on me.  In 8 days, this is all we’ve gotten.  Can you imagine what kind of communication we would have received had she been in the hospital for any other physical crisis?  Frustration does not begin to cover it.

After visiting hours, we headed home.  Kieran fell asleep on the way, which was understandable, but at dinner, she barely ate.  By the time she went to bed, she said her head hurt, but my head had been hurting for a week, so I didn’t think a whole lot about it.  I was focused on getting her towels washed and dried, everything back in its place for day two of the meet.  When the alarm went off this morning, I went in to wake Kieran, only to discover she was very warm.  I took her temperature and found it was 102.  Yikes!  I gave her Tylenol and Motrin and tried to go back to sleep, but I was worried about the meet.  Her coach hadn’t been there the day before, and I didn’t want her to miss the opportunity to swim at a meet for him for the first time this year.  Plus, I was thinking about the timing slot we had committed to – what if we didn’t show up for that?  And, yes, I am well aware this is stupid, but I was thinking about the food tickets I had bought the day before, the extra ones that I hadn’t yet used.  In the light of day, I’m well aware that it was 1.50 that would have been wasted, but when one is lying in bed in the darkness, trying not to consider whether her child has swine flu or something even more sinister, these are the stupid things she thinks about.

After an hour, I got up to check on Kieran.  The fever was gone.  I asked her if she felt up to swimming just a race or two.  She said yes.  We really should have left right then, but I thought if we were 10 minutes late, it would be okay.  I woke Brad, and we scrambled to get everything together quickly.  Kieran slept on the way there, and once we arrived, I told the coach supervising warm-ups (her regular coach had had a blow-out on the way there, and hadn’t arrived yet) that she wasn’t feeling well, so she let Kieran wait until the last 10 minutes to do any warm ups.  Kieran wasn’t warm, and she said she felt okay, so it seemed like a good idea for us to come.  Her first race, 50 back, was the race where she has the best chance of getting a time good enough for a December Championship invitation.  She is 1.3 off the invite time.  She looked flat – it wasn’t a great race.  Not horrible.  She only added .3 seconds, so not an awful showing, but still, she just looked half there.  I bundled her up and waited for the next race, which was not that far in the distance.   Next up, 100 yard freestyle.  While again, it wasn’t a terrible time, she looked flat.  I knew it wasn’t a good idea for her times to be there, but she also hadn’t told her main coach that she was swimming sick.  By the time she got out of the water after her second race, I knew she was most likely not going back in.  She went back to the coaching area and explained to her coach that she had a fever, and she didn’t want to let him down.  He told her she was allowed to skip meets for a fever or stomach bug, but not a cold.  Hey, at least we now know what the rules are!  Still, we were all disappointed on the drive home.  We did what we had set out to do, for the most part.  We fulfilled our timing commitment, and she had proven to her coach that she was committed, but still, her next meet isn’t until the first week of November, and it’s such a bummer that of all the weekends, she had to get sick on this one.

Once we got home, we had less than an hour before we had to head to UCLA.  Brad and I went together, leaving Kieran and Ailish here.  Ailish played nurse maid, making Kieran toast and making sure she took her medications when she needed to.  I told her she had to make sure Kieran didn’t leave the couch, and Ailish took that charge seriously.

Our visit with Brenna was another awkward one, but at least we were there together.  She said again that she wanted to go home.  We said again it was not up to us, it was up to the doctors, and we would not hear from them at least until tomorrow.  We spent the last half hour playing two rousing rounds of Yahtzee, in which Brenna beat us soundly.  When the clock ran out on our visit, we quietly, exhaustedly, made our way back home.  I mentioned to Brad on the drive home that it felt like we lived a week in a day.  He said no, we lived a month in a week.  I agree – it had been a rough one.  In addition to the upheaval of hospitalizations and the physical ailments we dealt with, Brad had a blowout on Tuesday on the way to a meeting, and had to change his tire on a very busy transition ramp from one freeway to the next.  Before he could drive home that night, he had to get his tire replaced.  There were other minor tragedies, none earth shattering, but all making for a generally life-sapping week.

So, to recap – there were good things, including the Dodgers sweep of the Cardinals, which was awesome to watch last night.  The puppies were finally groomed this week, and their moods greatly improved because of it.  Kieran and Ailish both look spiffy in their new fall clothes, and Kieran, thanks to her two inch growth spurt, acquired both a new practice suit and a new competition suit this week.  But the low points – they have continually weighed on us this week.  It’s like carrying a large backpack – at the beginning, it’s okay, you feel strong, and you are confident you can carry it as long as you need to.  But as time wears on, first your shoulders start to hurt, then you feel it in your back, and then all of the little things, the stitches on the straps, the fabric, the snaps, they all begin to dig in until you can’t possibly carry it anymore.  Somehow, that’s how this week has felt.  I’m still walking, we’re still carrying it.  But the burden of juggling these two worlds, it’s gotten awfully heavy.  As much as Brenna needed the break, we need her back here.  I don’t want to leave her behind while we carry on as usual.  Our life is on hold right now, and it will remain that way until she comes back.  We are at the mercy of others on this, and that’s not a feeling I enjoy.

In search of a compass

Today, Jani’s story was featured on Oprah.  I know that Michael and Susan are doing everything they can for Jani and Bodhi, and though I haven’t yet seen it (Pacific time), I am hopeful that it will continue to spread the word that these children are afflicted with a terrible disease, and that they would never behave this way if they had a choice.  That’s what struck me so much about Brenna on Friday – she truly didn’t want to be violent, and begged us to take her to the hospital to keep us safe.  Ailish thanked her for that later, for being brave enough to have us remove her rather than take the risk of hurting anyone.  That is a huge step.    

For a good deal of time, I have felt like, even if I wasn’t sure exactly where we were going, that I at least felt comfortable with the road.  I knew the landmarks, knew where to turn around, knew when we were getting off track.  But with this recent development, and the weeks leading up to it, I suddenly feel like I’ve been dropped in the middle of nowhere, with no map, no guide, no idea of which direction to turn.  It seems like every offramp leads to a dead end.  I am completely lost, and I have no idea how to find our way back.

I suppose this could all be traced back to June, honestly.  We began to make choices that did not sit well with the staff in charge of Brenna’s case.  I don’t regret those choices at all.  I am still glad that we brought her home, because we had no idea at that time how much she’s missed in regards to school, and to life, for that matter, but still, that set into motion the withdrawal of support from the DMH and the District.  We fought throughout the summer to get an IEP done, fought to get the “right” school placement (looking back, that makes me laugh, because there really isn’t a “right” one within our district boundaries), fought to get her subject material that would challenge and educate her.  We wanted our brilliantly gifted but terribly tormented daughter to be taught at grade level.  We wanted her to have every opportunity at the end of high school that any other graduate has.  We don’t expect that she’ll score a 4.8 GPA by the end – we just don’t want all of the doors slammed shut before she even begins.  Apparently, this is too much to ask for.

Our second alienating choice was to withdraw her from the district altogether.  After three weeks in her school’s SED program, it was quite clear that education was the last thing on their minds.  Containment would best describe the program.  After a lot of thought, and I’ll admit, I was up against the wall of a registration deadline, we decided to pull Brenna from the public school and try homeschooling her with a virtual online program.  Again – not something I regret, because I didn’t realize until then just how much Brenna had missed in the past three years.  If I had not been there to supervise her schooling, I don’t think there would have been any way for me to witness it, to know just how much she lacked.  It has nothing to do with intelligence – she is clearly quite intelligent.  She just missed *so* much.  The biggest problem was that we were up against this four-year timeline.  Four years to get her out of high school, and to do that, you have to take these required classes.  If you needed to take a step backwards, that was going to throw everything out of whack.  We were up against a rigid timeline of how things needed to go to be able to graduate from high school.

Somewhere along there, I began to wonder if it wouldn’t be possible to take a step backwards and place her back in 8^th grade.  She had accelerated from 1^st – 2^nd, again, not a decision I regret.  In that moment, with the information we had at that time, it was the best thing to do for her.  She was years ahead of her class, even after she’d been moved to 2^nd grade, and it seemed the best possible way to keep her occupied and out of trouble.  I still believe to this day that she would be advanced had she received the proper education she needed during the last three years.  If, after a meltdown that caused her to miss class, someone were to have sat down with her and gone over her homework, making sure she understood it, making sure she finished it, she would have gotten the material she needed.  If, after realizing she was struggling with a subject, any efforts had been made to make sure she stayed with it, she would be okay.  I realize those are the kinds of things parents do.  I realize that it may seem like my responsibility.  But from more than 1,000 miles away, with no idea that she was falling behind so dramatically, I had no idea that this was happening.  When the parents are not available to help, and don’t realize that their child needs help (because, believe me, if I had known, I would have worked out a way to help her over the phone if I had to), then the staff need to take that responsibility.  If they ask me to hand over my child for 100% of their days, for years at a time, then I expect my child to come back better, not worse for the experience.  So, it happened.  She fell behind.  And here we are.  So I thought the most appropriate, least restrictive (and I hate that phrase, because in special ed terms, for the school, it usually translates to least expensive, but it’s actually an appropriate usage of the term here) option would be to put her back in 8^th grade, give her a year to catch up before she’s under the tremendous pressure of high school, give her a second chance to succeed.  After Brenna’s hospitalization, with the IEP looming, I asked the special ed coordinator if this was an option.  She said it would be a good option, but she would have to check with the special ed director. 

Monday, I called to check in and make sure the IEP was postponed, and also to see about whether we could move Brenna back.  With a sympathetic sigh, she said no, the director would not allow it.  To my chagrin, I began to cry.  I really try hard not to – I try to keep it together when I’m talking to people handling the girls’ cases, but sometimes, it’s just so frustrating.  It makes perfect sense.  Why is this not possible?  Where is the rule that governs this?  Would they say the same thing if a child missed a significant portion of school due to cancer treatment?  I finally gave up and said goodbye to her.  I gave myself a five-minute window to cry my eyes out, then dried my tears and tried to figure out the next step.  I called Sandy and told her about the conversation.  She did have a brilliant plan, I have to say.  Try re-enrolling her in another online program as an 8^th grader.  Brenna’s transcripts from residential are technically incorrect.  They list her grades for 6^th and 7^th grade, when it should be 7^th and 8^th, so I could probably slip it past an admissions person.  Do I say up front what the situation is?  I am not sure what I should do.  We could limp along with the program she’s in, but that would be exactly that – limping, and I’m not sure how long she’ll be able to keep up when she doesn’t have the fundamentals to support her.

I know it seems silly – why is this so important?  Why, when it seems like we are fighting for her life, why does school even matter?  Because that’s just it.  We are fighting for her *life*.  Her life should have every option still available to her.  Not because we expect her to go to an Ivy League, or even a 4-year college for that matter, but that she have the options to choose from, that she have every opportunity to pursue her dreams.   Why does that matter?  First, obviously, because I want Brenna to be able to feel successful, to be able to achieve some level of normalcy, whatever level that is possible for her.  Secondly, if Brenna does feel successful and does feel fulfilled in a job, she will be much more likely to do well, to stay even keeled, to keep herself together.  I expect her to have a job and have a life because if I don’t, I’m expecting her to be institutionalized or jailed (which, really, in this day and age, is the same thing.  The institutions are gone, all that’s left are the jails).  I want her to feel like she can still do anything she wants, I don’t want her to feel like there are already limits placed on her capabilities.  It was easy for me, when she was in grade school and light years ahead of her classmates, to not worry about the school part.  But now, when we are staring straight down the barrel of life heading towards us, the reality of the grown up world just four years away, it really changes my perspective.

We are in day 3 of Brenna’s stay at UCLA.  I spoke to a “Med back up” doctor yesterday, but she informed me she wasn’t the one to talk to about Brenna’s case, she just took care of the meds.  They increased her Depakote, so we’ll see if that helps.  The resident, who was supposed to call me yesterday, still hasn’t called.  The social worker called me about a meeting on Thursday afternoon.  We’ll see how that goes.  I used to get hopeful about those kinds of meetings, but I have to say, I don’t hold out much hope for their effectiveness anymore.

In all of these years of struggle, usually I’m steady.  Usually I hold things together, stay the course.  But somehow, between the hospitalization, the IEP conversation, and the realization that we have to do something drastic, and do it quickly, to salvage Brenna’s chances at a future, I have really been thrown for a loop.  I’m trying to find my compass again, hoping it leads me in the right direction.

Square Two

10/2/09 (or wait, is it 10/3 now?  I guess, just barely, it is)

I’m writing from UCLA’s Emergency Room waiting room.  Not exactly the way I thought this week would end, but life sure does have a way of throwing in some surprises, doesn’t it?

Yet another eventful week has gone by – I had my own medical issues, beginning with a very painful ultrasound of my gall bladder, what I think was a gall stone attack, but then I found out finally 9 days later (the tech told me it would be 2-3 business days, but I don’t know if it got misplaced or what, it took several calls to finally have it read) that my results were negative.  Um, okay.  Back to square one.

As for the girls – wow, it’s been interesting.  I kept having a sixth sense of impending doom, knowing that someone was headed for a meltdown, but I was completely surprised by which girl it turned out to be. 

Kieran had her moments.  While she loves school, and lives and breathes for swim, there were a lot of issues with her sisters.  There were off and on moments with Brenna, but she and Ailish were struggling the most.  It all came to a head when Kieran came to me before school one day and said she just didn’t have a good feeling.  I asked why?  She explained that Ailish threatened to throw rocks at her, and that she didn’t feel safe.   I was trying to put all this together when she then told me that she thought she should quit swim.  I was stunned.  Why?  Because, she said, every time she succeeded at something, Ailish hated her more.  My heart just hurt for her.  I told her absolutely not, she would keep swimming, and she would worry about herself, not about anyone else’s happiness.  There was no way I was going to let her give up on swim for someone else.  I got her off to school and resolved to try to figure out a way to help her.  It was such a difficult day.  I was filled with such a hatred of, of what?  I couldn’t hate Ailish.  I love Ailish.  I hated what made Ailish do such things, what made her believe that Kieran was the root of all evil.  There is nothing worse than feeling like you must protect one child from another – it’s just not natural.  I was driving around that day, running errands, getting my labs drawn, getting groceries, but all the while, I was fighting back tears, trying to figure out how to fix this.  We could give Kieran her own space, but without a locking door, she was no more safe from them (and probably, in some ways, less, if she were downstairs and out of earshot at times).  There was only one solution that seemed to make sense.  I needed to clear out the scrapbook supplies from our bedroom and see if we could set up an area for Kieran.  That was my plan for this weekend – to get that done.  I had come to a solution, but it wasn’t really a satisfying one – not because I mind Kieran in our room so terribly much, but just that we had to take such drastic measures.  No one could understand this outside of our family, but we are left with very few options.

As for Ailish, who still doesn’t quite understand what the whole deal with Kieran is, I still have seen signs recently that she was starting to lose it a bit.  Nothing huge, but we had been dealing with the medication issue, with her missing several days in a row.  She swore up and down it was not intentional, but intentional or not, losing that many days in a row could cause pretty drastic mood swings.  I started to see some of the paranoia creep back in, more of the backtalk she exhibited last year before the big incident.  I know some of this can be attributed to adolescence, but I can never tell what’s minor “growing pains” and what’s something much more serious.  This was where my impending sense of doom came in – I was just so worried about leaving the two of them anywhere alone.

The usual obligations of Girl Scouts and swim filled up much of my week.  There was also school for Brenna, which seemed to finally be hitting its flow.  She struggled to get through a written essay, but with the help of my friend Lisa, she did get it written, and, for a first draft, did an excellent job.  Although there were some hiccups along the way, mostly just trying to keep her focused because she was “up” for most of the week, I felt like we were doing the right thing, and that the home school program was meeting both of her needs – keeping her educated while not stressing her out too much.

Today, today was a day where I could have used some danger music.  I am always wishing I could have my own soundtrack so that the danger music would warn me when things were getting a little dicey.  No such luck.  It started out well enough, if not extremely busy.  Kieran had her Friday minimum day, and then we grabbed her lunch and got her in to see our therapist, which was so great.  She hasn’t seen her in quite awhile, and I know she has so much to talk about, so it was important for Kieran to have that.  From therapy, we went to her first private swim lesson with her coach.  Another thing she needed, to have that time to get one on one instruction, and another diversion for her.  From there, we got Ailish from school, then dropped Kieran back off for swim practice.  I went home with Ailish, then brought both Brenna and Ailish back to swim with me to get Kieran, as we had to drop Ailish off at a Girl Scout IP Workshop.  Her workshop ran for two hours, so I decided the three of us should grab dinner while we waited.  We went to a little Italian place, and though the food wasn’t spectacular, we all had a great time, joking around and talking.  Afterwards, we still had a little time, so we ran to Wal-Mart to pick up a few things.  Brenna was intent on getting Velveeta so she could make queso, and we had a good time searching for it.  Velveeta is always in the strangest places, so we had a good laugh about the aisle where we found it.  We went from the store back to the school to pick Ailish up.  On the way there, we listened to the first inning of the Dodgers-Rockies game, and I knew from there that we weren’t going to win, so we shut that off once we got to the school, and we chatted for a few minutes before it was time to get her.  I told the girls to stay in the car while I walked the 50 yards to school.  Looking back, Brenna did say, “Stay here?  Can’t we come in?”  But I had brushed her off with a wave.  I would only be gone a second.  I didn’t realize that Ailish was going to be detained for longer than most of the other attendees while her leader chatted with her troop.  Kieran sent me a text, so I called jokingly to ask if everything was okay.  She said, “NO!” but I still didn’t quite get it.  I told Kieran to come inside and I would deal with the two of them when I was done.  So Kieran ran in, but she didn’t say anything.  It was only a couple of minutes before we were done – I distinctly remember looking at the clock when we pulled out – 8:09.  I asked them, quite irritably, what in the world was going on?  Kieran said she began humming a song that was playing on her Zune and Brenna just “flipped out.”  I was really upset with Brenna, but Ailish was quite excited to tell us about her Space IP, so the conversation was quickly diverted.  Brenna texted me that she couldn’t be alone – she was freaking out.  Brad called at that point to say he was still stuck in traffic, so I had Ailish tell him about her IP adventure.  I never got the chance to respond to Brenna’s text.  That danger music would have really come in handy.

Once we got home, I dealt with unloading the car and then realized that the dogs really needed to go out, so I took them out myself, since Kieran, who had the dog chore, needed to get her bag loaded up for her swim meet tomorrow.  I was gone for several minutes because Duncan was quite selective about where he went potty tonight, so when I got back, I asked if Brenna and Ailish had taken their meds.  Ailish moved towards her meds and said she didn’t know about Brenna.  I called upstairs to Brenna, no answer.  Again I called.  Again, no answer.  I asked the girls if they knew where she was.  They went upstairs, but then came down to say they didn’t know.  I went up to her room and found her curled up tightly in a ball.  I still didn’t get it.  I told her she needed to take her meds.  She spat back a defiant NO!  I went downstairs, got her meds together and a glass of water and headed back to her room, certain that I would be able to get her to take her meds.  She was in a snit, and I wasn’t about to let that get in the way of her taking care of her medications.  I ordered her to take them.  She screamed NO!  I tried to force her to take her Depakote – she spit it out, and it hit the floor.  I turned off the light and walked out, hoping that she would calm down a little and I could talk her into it.  Five feet out the door and I hear a loud bang.  I turned to see her hitting the wall with her room fan with all her might.  Somewhere at that point, I got it.  We were in full meltdown mode.  I was so busy looking for Ailish to collapse, it hadn’t occurred to me that Brenna was on the verge.  It took every ounce of strength I had to pry the fan out of her hands.  While I tried to put it away from her reach, she began kicking the wall, full bore.  I wedged myself between her and the wall, so she began kicking at the foot of her bunk bed, shaking the entire thing.  I held her legs down, she reached up and grabbed the straps holding the bunkboard pieces above her, and she began tugging on it.  I used one leg to keep her legs as still as I could, while I used an arm to hold down her arms.  I called Brad again and thankfully, he was nearly home.  Brenna was screaming at me with full force – I was not her mother, I was never her mother, she didn’t know who I was.  She hated me, she hated everyone.  I just kept telling her okay.  I didn’t know how else to respond.  At one point, the dogs came in to comfort her (it is amazing how much they understand and react to – they know the sounds, and they will do everything they can to help), and she screamed as loudly as she could, begging us, “GET THEM OUT!  GET THEM OUT!  I WILL HURT THEM!”  Then she screamed that they were coming, THEY WERE COMING!  We said who?  THEM, THEY ARE COMING TO GET ME!  She screamed and sobbed.  After several minutes, she began talking about wanting to go to the hospital, feeling like if she wasn’t put somewhere, she would hurt someone.  She said she didn’t feel safe being at home.  Once Brad arrived, I had him take over the restraints while I began calling around.  I called the County Emergency Response Team.  I was told all of their teams were out on calls, so I should call my insurance company.  I called UCLA and left a message – they said a nurse would call me back and let me know if there was a bed.  I called my insurance company and found that they have absolutely no humans available after 5 p.m. or on weekends.  I went back to check on Brenna.  She and Brad had gotten to a point where she was at least less violent.  I asked, did she still feel like the hospital was the best answer?  She cried yes, yes, yes.  Then she began sobbing about how sorry she was for what she had said.  I told her I understood, I knew it wasn’t her saying those things.  It was okay.  But she was inconsolable.  She couldn’t forgive herself.  I began searching my insurance company’s directory, looking for any “nearby” pediatric psychiatric hospitals (the closest ones are at least 34 miles away from home).  After an hour, I called UCLA again.  I left another message.  I called Las Encinas.  No beds.  As I cried, the intake person gave me the names and numbers of a few more hospitals to try.  I called them.  No beds.  While I made calls, the girls got Brenna packed.  It was at once so ordinary and yet so heartbreaking – sisters working together to pack Brenna up for the hospital.  Kieran got Brenna’s suitcase.  Brenna and Brad got some clothes together for her.  Ailish had the wonderful idea to get some pictures together for her.  Kieran gathered up some things she thought Brenna would need – a deck of cards, the beloved Blink game, Kieran’s prized turtle she was awarded for winning her heat at a meet in the spring, one of her First Place ribbons, and a note where she asks Brenna to please not forget her.  Thankfully, I didn’t see any of her treasures until later – I might have just completely fallen apart if I had.  Finally, I got a call back from the UCLA nurse.  She said they did have a bed, but that they couldn’t hold it for me, and we would have to just drive to the emergency room to see if the bed was still available when we got here.  Without any other choice, we decided we had to take the chance.  Sandy offered to have them come over, and then she offered to come over and pick them up, which, again, just proves even further that she is my superhero.  The three of us began the long journey to UCLA.  Brenna was completely silent in the car.  Brad was talking about some new type of surfacing the state was planning to use on the freeways.  I heard him but I wasn’t listening.  I was stuck in a conversation in my head.   I just kept saying to myself, “How did we get here again?  How did I not see this coming?”  I just couldn’t wrap my head around it. 

It took some time after we got off the 405 to wind our way through the streets of Westwood.  It was a party night, all of the greek houses were overflowing with partiers, so we had to be extra careful not to hit anyone stumbling out.  We made our way to the emergency room, only to find that the emergency room we had taken Ailish to was no longer there – a lot had changed in six years.  Back out into the fray we went, and finally found the new emergency room.  The bright lobby had only a few patients.  I thought maybe this might be a quick admission.  We signed in about 10:45 p.m.

It is now 2:49 a.m., and we are in an exam room, which is good.  At least we have control over the TV channels.  Brenna has been examined twice by nurses, the medical doctor, and the psychiatric resident.  Her belongings were duly noted, documented, and signed for.  We went over all the sordid details twice, and I was quite worried that, as calm as she was, they weren’t going to admit her.  I was ready to plead, she was only calm because she knew she was going to the hospital.  She responded to everything without affect, without any bit of emotion whatsoever.  Thankfully, I didn’t have to plead.  At 2:58, the resident came back to give us the admission paperwork.  Now, we wait for the nurse to come down and get us to settle her in.  Past experience tells me we may have a good hour or more ahead of us before we leave.  And then we begin our treks to UCLA once again.  It’s like a replay of a bad dream, one I had hoped to never see again.

We will pick up the pieces and quite possibly go home only to retrieve Kieran and take her to her meet.  We have to be up at 6:00, and given the hourlong drive home, it’s quite possible we will have less than an hour before we need to be up and moving for her meet.  It makes the whole sleep thing not really worth it.  I feel worst for Kieran, who wants so badly to impress her coach at her first meet since moving up to Gold, and yet I have no idea how much, if any, sleep she’s gotten tonight.  I pray that she was able to settle in and get some kind of rest.  I hope that she can put this behind her and just swim tomorrow.  She says when she gets in the water, all she thinks about is the water, and that’s what I’m hoping for.

10/4/09

I had planned to post this sometime yesterday, but as it turned out, we didn’t have much time after picking Kieran and Ailish up from Sandy’s before we had to be at Kieran’s meet.  We did not get Brenna settled into her room until 4:30, which meant we got to Sandy’s just before 5:30.  By the time we got home and Kieran and Brad collapsed into bed, I realized Ailish was seriously out of sorts.  She had only gotten a few hours of sleep at Sandy’s, and she was alternately worried that she had somehow caused Brenna’s episode (because it all started when we went to pick Ailish up from her Girl Scout event), then she was talking about the hospital, I don’t know whether she was worried about visiting or worried about ending up there, she was just talking in a free-flowing stream, and I could almost feel the anxiety swirling around her.  I knew I wasn’t going to able to sleep in the little bit of time we had, so I just let her ramble.  I knew she needed to let it loose or it was just going to build up inside of her.

I gave Kieran as long as I could before I woke her up.  So we would miss getting a good spot to set up chairs, and maybe she’d have to wait in line to check in.  The extra 30 minutes of sleep was worth all of that.  I kept thinking about the last thing Brenna said to me as I said goodbye to her.  As I hugged her, she said she was sorry, and I said no, she had absolutely nothing to be sorry about.  The nurse told her she was very brave to ask for help before she hurt someone.  I appreciated his words in that moment.  She needed to hear that from someone other than us.  So many of the admitting nurses we’ve met over the years have been almost cruel to the girls as they come in.  It’s scary enough to be strapped to an ambulance stretcher, or exhausting enough after 6-8 hours in an emergency room, to have a nurse almost angry at you – and angry at what?  They weren’t there, fighting the battle, whatever it was that took us to the decision to hospitalize them.  The only thing I can think is that a new admit is a lot of paperwork, it’s labor-intensive, and they are irritated with them for interrupting their night.  I just think the last thing the girls need at that moment is someone who looks like they disapprove.  The nurse we had this time around was very kind, he was very compassionate, and, exhausted as I was, I appreciated that.  As we hugged, Brenna looked up and said, “Please tell Kieran I’m sorry I ruined her meet.”  I told her not to worry, she would be okay.

It took a long time to wake Kieran, and for a moment, I thought, what was the point?  She would probably have an awful day, and I didn’t want that to be the start of her season.  But I had also committed to a volunteer job during the meet, and I didn’t want to let them down.  We would deal with however her races turned out.  I decided after Brad didn’t respond to let him sleep for awhile.  Kieran and I gathered up our stuff and made our way to the pool.  Once there, I was very happy to have a job that wouldn’t let me sit down.  I didn’t think I could make it if I sat for any period of time.  However, my body was screaming.  I knew the lack of sleep was affecting my other ailments, and my joints were aching terribly.  Still, I was grateful for something to keep me busy.

Brad arrived just before the meet began, and I was grateful to have him.  I wanted her to feel supported, but I could only step away briefly to watch her race, and couldn’t be there fully for her.  It was finally time for her first race, and I’m not sure who was more nervous – me or her.  I knew this race would color the entire rest of the day.  50 back, two laps of backstroke.  It’s her favorite stroke.  I just hoped the exhaustion wouldn’t affect her.  She hopped in, the buzzer sounded, and she was off.  41 seconds later, she had taken nearly 10 seconds off her old time and won her heat.  I was so thrilled for her!  That’s when I finally breathed – I knew she would be okay.  She was happy because the heat prize was a package of cookies, and then I got to see firsthand as I was posting her results that she placed 1^st in her age group.  As I was taping it up to the wall, Brenna’s words came to mind, and tears welled up.  I made myself stop – I was so exhausted, I was afraid I would never stop crying if I let myself start right then.  I gave Kieran a huge hug, told her the news and went back to work.  Kieran’s two other races – 50 breast and 50 free, both went just as well.  She took 9 seconds off her freestyle time and set a great time for her 50 breast – the first time she’d ever swum that race in short course.  There were lots of cookies, one set that she put aside for Brenna, which made me both proud of her and a little heartbroken.

We got home from the meet at 12:30 and needed to be on the road at 1:00 to get to Brenna for visiting hours.  At first, we thought everyone would go, and then Ailish worried about crowding Brenna too much.  Brad was exhausted and falling asleep every time he didn’t have someone actively talking to him.  I decided Kieran and I would go for the long visit, 2-4, and they could come down for the short visit, 7-8.  I was so irritated when we hit traffic.  I didn’t have time for traffic.  We got to the ward around 2:15, and I apologized to Brenna, but she didn’t even realize it was time for us to visit, so she was fine.  She loved her room, which is so much nicer than any room we’ve ever seen.  She has her own bathroom, her own TV, a lovely view of Westwood.  Her walls are painted a serene blue.  The mattress is even nice.   She said she felt good.  “Good enough to come home?”  “No!” she said quickly.  “This is keeping me, it’s keeping you, safe,” she said, matter of factly.  Wow.  I’ll admit, her bed was too comfortable.  All I wanted to do was sleep, but I knew that wasn’t  doable.  The three of us ended up playing some rousing rounds of Blink.  Brenna and Kieran were laughing hysterically at each other, and I realized this was the exact sound I had heard at dinner, less than 24 hours before.  “How did we get here?” I asked out loud, and Brenna stopped and looked at me.  “Really, B, how did we go from this kind of laughter at the restaurant to being here?  What happened?  Do you remember a moment when it just broke?”  Brenna looked at me, at a loss for words.  “I don’t know,” she said softly.  “I guess it had been building.”  “But was there a moment you can remember?”  “You left me alone in the car!” she said, her voice rising.  “They were coming to get me!”  “Who?”  “The people.”  Ahh.  Okay.  There was a moment, but it could have happened anywhere.

After the visit, we had lunch/dinner with Cinnamon, Becca’s mom.  Cinnamon is near the end of this particular UCLA journey, we are at the beginning.  I love Cinnamon – we have the same very dark sense of humor about all of this.  Becca is an absolutely beautiful girl.  On the one day I saw her, at Jani’s party, she was having a great time, and got along well with the girls.  But Becca is haunted by a similar idea – that the man is coming for her.  Becca has been inpatient at UCLA every single month this year but one.  Cinnamon lives maybe a bit further out than we do, and the thought of going through all of that is exhausting, and yet, I know I would do the same thing if I had to.  Cinnamon gave me lots of tips on parking and navigating the maze of buildings at the new hospital campus.  I appreciated all of the information – how nice it would be if every parent had someone who had been there before to tell them how to make their lives easier in a time of crisis.  It was time for the next visit, and Brad and Ailish joined us with some items Brenna had asked for from home.  Ailish had seen the list and, on her own, packed the bag for Brenna.  She told Brad she would know better what Brenna needed.  She did a great job, and I was proud of her for being so compassionate.  We had a good visit, playing Blink, then card games, and then charades.  I was grateful to have them there.  Sometimes those visits can be so intense, staring at each other for an hour, and everyone was willing to play, so the time passed quickly.  Brenna was sad to see us go, but we reminded her, we would be back for the two visits the next day.

We split up and made our separate ways home.  Kieran and I put on Black Eyed Peas on Max Volume and sang our hearts out all the way home so we wouldn’t fall asleep.  We crawled into bed and watched the Dodgers *finally* win the Division Championship and then I was out.  Kieran fell asleep in the 8^th.  This morning, I will make pancakes, Sunday tradition, and once she wakes up, I will help Ailish with her homework.  Her anxieties about her homework came spilling out the night before as I tried to say goodnight.  I knew she was troubled by something, and I had just assumed it was Brenna’s situation, but it was her homework that was bothering her, so I promised to help today.  She said she knows she shouldn’t let the anxiety control everything, but she couldn’t help it.  I understood.  Ailish is also quite sad that Kieran isn't going to share a room with her anymore.  I explained, as gently as I could, did she understand why?  No, she didn't.  "Because you threatened to hurt her again."  "Well, sometimes my anger comes out, and I can't hurt the dogs, they can't fight back.  They are helpless."  "But Ailish, Kieran doesn't want to hurt you."  "I know THAT!  I don't want to hurt her.  But I have to hurt something when the anger comes out, and she's all I have."  Wow.  How do you resolve that?  They love each other, they want to be sisters, and yet Ailish can't help but go after her when she's angry, and Kieran, obviously, can't help but be scared of her *all* of the time because she doesn't know when that anger is going to come spilling through.  What am I supposed to do with that?  Wow.  It was honest, it was as open as Ailish has been in so long, and yet I have no clue how to help them. 

I just want to take a brief second to thank everyone who has written me in the last couple of weeks.  I will respond – I have put them all in a separate folder to respond to.  I know that her hospitalization just happened, but it was honestly something I felt building for weeks, and I just haven’t been able to be on the computer as much as I wanted to.  I just want you to know I appreciate your words so much, and that I haven’t forgotten them.

This whole week brings me back to something Ailish said the other day.  She was talking about residential, and whether it did her or Brenna any good.  “Not really,” she said.  “All it did was bring us back to, well, square two.”  This morning, I completely understand.  Square one is the beginning.  We’re not at the beginning.  We’ve been through hell and back, only to find out the things we’d fought so hard to win were not victories after all, that the services we’d fought for would actually do more harm than good sometimes, and that now, we are left with very few options.  If Ailish meant square two is worse than square one, I would definitely have to agree.

Untitled

I tried to come up with a title, but there is just *so* much packed into this one post, there's not a pithy phrase that could encompass all of it.  Really, this should be much longer, and spread out over two or three posts, but as time was scarce this week, this is as good as it could get.

So.   It was a very long week.  I will try to back up, but the details are a little blurry.  I did my headless chicken dance on the 15^th, running around, trying to take care of last minute details at home, like stocking the fridge and making sure the girls had everything they needed, while simultaneously prepping for my class, packing, and trying to gear myself up for the trip.  It wasn’t that I was nervous about teaching – I love teaching.  Love that emotional boost I get when I can tell my students understand my point.  I love that I can get them past the guilt and onto their love of scrapbooking, the reason they began in the first place.  No, my anxiety had nothing to do with the class – it was more about what I was leaving behind.

I was leaving at such a fragile time.  Brenna was coming off of her manic episode, and she was still trying to figure out her online classes.  Ailish and Kieran seemed to be in good places, but the delicate dance of getting them both to school on time and then picked up and Kieran dropped off to swim was something that I had barely gotten accustomed to – I felt so bad for leaving Brad in the thick of it.  It didn’t help that all three girls (and the dogs) begged me not to go.  Okay, the dogs weren’t as vocal as the girls, but Reilly’s sad eyes as she sat on top of my suitcase made it very clear how she felt about the whole thing.  Brad played the supportive role, but I knew he didn’t really want me to go either.  I felt awful as I kissed each girl goodbye in the darkness on Wednesday morning, but I dutifully made my way down to LAX and boarded my flight to Minneapolis.  The flight itself was fine, and once we landed, and I had picked up my rental car, I eagerly made my way to my hotel.  I wanted to stretch out on the bed, open up my computer and start writing. 

Once I was safely ensconced in my room, I plugged in my laptop and prepared to get started.  There was just one problem – my Internet connection was not working.  I tried several different ways, but it would not find the connection to the hotel.  I decided to restart and see if that helped things.  After several minutes, it became apparent that there would be no restart.  Trying to fight my rising panic, I decided that I needed to take a break and grab some food.  I hadn’t eaten for 12 hours, and I was sure my headache had more to do with a lack of nourishment than a computer emergency. I mean, the computer was only 11 days old – it couldn’t be that it was dead already, right?  Somehow I thought if I left it alone to pout for awhile, it would be ready to come back out and play when I got back from linner. (It was 4:00 p.m. – my lunch, Minnesota dinner).  But alas, when I came back from eating, I found that my computer was still not in the mood, and that’s when I hit the panic button.

Without having a computer to do my searching for me, I was more grateful than ever for my phone’s navigational service, because I was able to find the nearest Sams Club and call them to see if they would be willing to exchange it.  It was a gamble, because I didn’t have my receipt, and I had to call Brad and have him give me the numbers off the receipt to be able to pull it up.  They were willing to exchange it, but once I got there and made the return, I realized that they only had one of my computer model left, and it was the display model.  No, not going to take a risk on one that’s been poked at several hundred times.  The store clerk was very nice and looked up availability at the other area stores.  He sighed, and said, “There is one store that has three of them, but it’s *really* far away.”  I’m thinking an hour?  Two hours?  “How far?”  “It’s about 25 minutes, ma’am.”  Ah.  See, in L.A., 25 minutes is like living right next door.  It actually takes 25 minutes to get across my little suburb, so that was nothing.   However, there was the small matter of time, and the fact that I did not have much of it before the store closed.  So I got back in my car, thanked my phone navigational system again, and made my way to Fridley.  With about five minutes to spare, I made my purchase, but I was not going to breathe again until I got it into the room and turned on.  To my great relief, it did turn on.  Yes, I lost what little data I had compiled in 11 days – photos of Kieran’s first day of school (with the exception of those I had put on here), photos of our trip to Disneyland (ditto), and some documents I had just started trying to put together again after the loss of the Mac, but the important part was I had a computer again, and I could get on with teaching my class and writing.  After that, I was exhausted.  I fell asleep early.

The next day, I spent a good part of the day writing in my room.  I talked Kieran through getting ready for school, wished Ailish a good day, and then tried to help Brenna with some issues she was having with her math class.  I can tell this is going to be a huge struggle this year, and unfortunately, there’s not much we can do to change it.  If we switch to a lower level class, it will not count towards a high school education, but she’s really behind on the basic elements of Algebra, so we need to get her caught up.  It is not that she isn’t capable of learning this, it’s just that she wasn’t given enough exposure for it to sink in.  Yet another costly side effect of residential.  I have a feeling these consequences will continue to come out of the woodwork as the years wear on.  Compounding Brenna’s issues with math, she does not think in resourceful ways.  She doesn’t have the capability to say, “That didn’t work for me.  What should I do next?”  Or to take a multi-step problem, whether it’s math or doing the dishes, and break it down into simple tasks she can check off one by one.  It is a *huge* disability, and frustrating to all of us, her included, when we forget that she truly cannot do it, no matter how smart she is.  We went back and forth on the phone all morning trying to figure it out, and Brenna became more and more frustrated.

Thursday night, I had a vendor reception to attend, so after my brief tour through the mall (as brief as is possible through the Mall of America!),  I headed to the reception to pick up my packet.  Just as I entered, the phone rang.  Brenna was completely melted down over the dishes.  Brad was trying to work out a compromise but Brenna wasn’t listening.  The call came from Kieran, who was terrified, because as she came home from swim, Brenna lunged at her, growling with her eyes dark with rage.  I called Sandy (my heroine yet again!), and she was able to run over and grab Kieran, so at least she wasn’t in the middle of the mess.  Still, I felt horrible.  Once I got back to the hotel room, I tried to figure out what I could do from where I was, and I realized it wasn’t much.  After more than two hours, Brenna finally calmed down, but Kieran didn’t go home until well after bedtime.  She wanted to be sure she didn’t have to see Brenna again that night.

The next day, Brad called to tell me that Ailish had not taken her meds in two days, even though she said she had.  I couldn’t tell if it was intentional or forgetfulness, but two days with absolutely no meds is dangerous, so I asked Brad if he could take her morning dosage to her at school.  I felt bad for him – it seemed like he couldn’t catch a break.  Every morning, Ailish forgot something important that he had to bring back to school, and the girls were really testing the limits when it came to their chores, something they are all usually pretty consistent about doing when I’m around.  When I asked her later that night why she didn’t take her meds, she summed it up perfectly:  “None of us are the same when you’re not around.  Everything gets turned upside down.”  Oh, the guilt.  I was almost positive she wasn’t trying to guilt me on purpose, but boy, did it pack its punch.  Message received.  We won’t be experimenting with long absences again.

Friday, I taught my first class.  It went really well, and everybody was excited by the wonderful prizes that Cropper Hopper gives away.  The hour flew by, and then it was time for me to head to the ballpark.  I was checking out the Metrodome, current (but not for long) home of the Minnesota Twins.  It gave me a chance to think about something else for a little while, even if my mind was never too far from the girls and what was going on at home.

Friday night, they had a visitor, which helped a great deal.  I think it gave all of the girls something to focus on, and they were able to hang out together, eating pizza, playing Rock Band, it was a lot of fun for them, and I am pretty sure a relief for Brad that they weren’t fighting amongst themselves the whole time.  I was so grateful that they all could have that reprieve.

Saturday, I wrote up until it was time to get to my class.  Once I got to the mall, I stopped for lunch at Noodles & Co., one of the things I miss the most about Colorado.  Then I taught my class, which went great, said goodbye to everyone, and then headed back to the hotel.  I wished more than anything I could have gone straight from class to the airport, but my flight wasn’t scheduled to leave until the next night, and it would cost me $169 to change flights.  I decided to wait it out until the next day, when it would only cost me $50 to fly standby on an earlier flight.  That night was the hardest – which didn’t make much sense.  The worst of the situation at home was over, and the girls were all in a good mood on Saturday.  They even told me not to worry, not to spend the money to switch flights, they would be okay if I didn’t get out until my scheduled flight, the last flight of the night.  But still, there’s always that specter hanging over things.  I’ve seen far too many ordinary days turn horrific in a matter of moments, over the tiniest of things.   It’s not that I thought Brad couldn’t handle it, but really, in every crisis situation, it’s been me at the forefront.  Oftentimes, it’s been me alone, and he catches up as soon as he can.  How many times have I stepped down from an ambulance with him waiting there for me?  How many phone calls have I made, asking him where he was on the freeway, how far was he from home, yet knowing it would be hours before he could get here?  It’s not a fault of his – his job is, quite frankly, to have a job.  My job is to take care of the girls.  We made that agreement at the beginning, and we both understood that.  Parenting vows, the vows we never say publicly, but know deep in our hearts are more binding than a marriage vow ever could be, they ask a lot of the expectant parents pledging them.  For better for worse, for richer for poorer, in sickness and in health, ‘til death do us part.  Think about that in the context of your child, a child you don’t yet know, but love fiercely already.  If everything goes well, parenting is an often thankless but ultimately rewarding job.  If you encounter difficulties, those vows suddenly take on a more urgent, more serious meaning.  Both of us are doing our parts to uphold those vows.  But my absence left a gap, and this having been the first time I left Brad with all three girls at once since 2006, I didn’t realize how big of a gap it would leave.

I did make it onto an earlier flight, and I was so happy to touch down in Los Angeles while the sun was still up.  It took two more hours to get home, but I was home in time to help make dinner.  The girls thanked me for dinner, but really, it was so comforting to be there, to be able to provide that for them as soon as I got them, to sit around the table together and reconnect.  It was a gift.

My week is looking pretty wicked – as much as I’d love to be snuggled up at home watching series premieres every night, instead I have some sort of meeting every night this week.  Three of them are Girl Scout related.  Tonight is Kieran’s Back to School night, so that should be fun.  I know she’s really looking forward to my seeing what she’s done in her classroom.  She’s finally content at school, and for that, I am *so* happy.   I just want every other place in her life to be a place where she can feel positive.  I know that our situation here is so stressful for her, and between swim and school, I want those to be the places that she can feel good about herself and her life.

Last night, as I’m sure many of you know, Fox11 news ran a story about our family.  I didn’t expect going public to be a difficult thing.  I’ve been talking about the girls on my blog for years, so honestly I didn’t see a difference.   Before we allowed any cameras in, we asked the girls if they would be willing to share their stories, and we told them if they ever felt uncomfortable or wanted us to stop, we absolutely would.  All three girls were more than willing to share.  I think we all feel a sense that if more people understood what we were up against, maybe more would be done to help fight these disorders, or at the very least, my girls wouldn’t feel so alone, so on the fringe of things.  The interesting thing about the process, though, was realizing how little Brenna or Ailish remember about their behaviors – whether it happened years ago or last night – if their behaviors occurred during a rage, a manic episode, or a mixed state, they don’t remember any of it.  When they talk about what happened, even when they talk about residential, they have somehow detached themselves from it, and I can totally understand why.  To protect themselves, they had to take a step away from it.  But Brad and Kieran and I, we were the ones who lived it, all of it, and can’t forget what happened.  It was very difficult to talk about it, and Brad and I found ourselves more depressed about the situation than we had been in years – this, at a time when our family is finally together again.  As for Kieran, she finally broke one night – she said it’s just too hard to go back in time.  I totally respect that.  I think in many ways, Kieran’s (and Brad and mine, at times) situation is the same as one who loves someone with Alzheimers or dementia.  It is frustrating for the patient, to be sure, but for the loved ones around them, it is particularly heartbreaking because we’ve seen them in moments of health, and we know what they can be capable of.  We realize that none of the violence is intentional, and yet it doesn’t make it hurt any less – in many ways, it makes it hurt more.  So parts of talking about it were difficult, and then we got the notification of when it would air.  Suddenly I realized there were many people in our worlds who might not realize the severity of our situation.  It’s not something that comes up in polite conversation in the school yard, at the office, at Girl Scout meetings, etc.  I hoped that no one would be offended, but offended isn’t even the right word.  I didn’t want our family to be judged, to be thought of as dangerous.  Overwhelmingly, though, my friends have reached out to me with positive encouragement.  I just hope we can continue to spread the word that mental illness should never be fought by one person, one family.  It’s going to take an army to conquer these demons, and we need all the soldiers we can get.

Roller Coasters (real and metaphorical)

9/6

Today was a good day.  It was a difficult day, not emotionally so much as physically.  We had promised the girls that if they did what needed to be done today, tomorrow would be very special.  We plan to go to Disneyland tomorrow, which is exciting enough for Ailish and Kieran, but for Brenna, it is especially important – she hasn’t been there since 2005.  It’s a big deal!

What was so important about today?  We needed the house clean.  We needed Kieran to be situated, wherever that was.  We had talked about moving her to a room downstairs, but that made her seem so remote from the rest of us at bedtime, and it made the house seem so cut off, with one of the rooms we depended on for family time turned into a private space.  Plus, Brenna had a total moment when Kieran moved her stuff out.  I don’t know if it had to do with her guilt about it (Brenna beat Kieran with a pair of shoes, which caused Kieran to not want anything to do with her, especially not sharing a space with her), or the fact that she felt lonely, but it really affected her.   Though I understood Kieran’s reasoning that she needed to be alone, I also was trying to satisfy the family goal to keep the downstairs area for all family use, and to keep Kieran together with the rest of us upstairs.  This was a tough sell, and I understood that.  It was so hard for me to tell her no.  So many times in my life as a child, I had to sacrifice my own needs for the greater good, and I still resent that to this day, so I knew the territory where I was heading, but on the other hand, we are the parents, and Kieran didn’t get to decide these major renovations.  Finally, I came up with a solution – work it out, or Brenna and Ailish would be sharing a room.  That scared all of them!  Ailish offered to let Kieran be with her, then took it back, then offered again.  They began the long and arduous work of combining their spaces.

Today, while Brad and I worked to clean the space downstairs – he did the lion’s share of the work in the kitchen, deep cleaning all of the appliances and counters, while I attacked the overloaded space on my desk – the girls worked on their rooms.  Kieran and Ailish had quite a job ahead of them.  I heard so much yelling and furniture moving.  I thought several times of stepping in, but ultimately, I decided to let them keep going.  If I had heard any violence, I would have stepped in immediately, but this was one of those times when I thought it was best to stay out of it, let them work it out.  It was so hard to not be in the middle of it, though.  But they did – they worked it out.  Ailish and Kieran have now assembled their space in a way that pleases both of them.  No, this doesn’t mean it’s permanent – nothing is permanent around here – but it does mean that I think they both learned an important lesson about compromise today.  I hope.

In the meantime, I must mention that I am typing from my new PC laptop, an amazing low-priced HP laptop we picked up at Sams Club yesterday.  Did I want to buy a new computer right now?  Absolutely not, but if I had to do it, I’m so glad I found this one for the price I did.  It is truly a wonder!  Brad was nice enough to accompany me to the Mac store on Saturday.  I’m so glad he did – I don’t know what I would have done without him.  Basically, it took less than five minutes for the “genius” to determine that the hard drive was irretrievably broken, and of course, yes, it was all my fault.  They would not cover anything.  It would be $1300 to repair.  As soon as the genius starting talking about my fault, I walked out.  I just couldn’t take it anymore.  It sounds so stupid now, so ridiculous, why was I so upset?  I sat bawling in the middle of the mall, wondering why this upset me so much.  I was just so tired.  I was so tired of fighting.  And I was so tired of trying to do the right thing – it seems that every time we’ve tried to research, to spend extra so we could get quality (i.e. the Honda Odyssey, the couch, the computer), it always seemed to blow up in our faces.  It is so frustrating, and on its own, it’s irritating, but when you add it to everything else, it’s just too much sometimes.  I was so glad Brad was with me through all of this – I don’t think I could have dealt with the Apple Genius (which I consider an oxymoron) nor could I have driven home in the state that I was, but we made a plan and decided to pick up the girls before we headed to Sams Club to check out computers.  There, we found this gorgeous specimen, a PC with a HUGE screen, fast processing, and lots of memory, for less than a quarter of what the Mac was 21 months ago, and less than half of the repair cost!  I was excited, but still, I was frustrated that I had to spend anything.  There was no denying it, though, once we got home, how good this computer was going to be.  While I worked at loading my new computer with programs, Brad looked it up, and found that we could get a new hard drive and a new disc drive (which failed more than 6 months ago) for the Mac for less than $200.  Yes, that’s what I said.  A better hard drive and a better disc drive for more than a $1000 less than Mac quoted us.  If we install it ourselves, however, we’ll be voiding the warranty.  Ha!  I want to take a moment, though,  and give a shout out to Mozy.  I installed Mozy several months ago, and after the initial long back up, they’ve come in and backed me up every day, for 4.95/month.  I checked Mozy and they have every single document I had on my Mac, including the pictures I loaded on Wednesday and hadn’t yet backed up to my external drive.   We still have some issues with the differences in platform, which I hope to work out on Tuesday, but still, to know they are all safe (they will send everything to me on DVD if necessary) means the world to me!  My external drive only backs up in Mac versions, so this will be huge when I’m trying to convert everything back to Windows!  So I’m happy to be home in my Windows world – truth be told, I’ve missed it!  And now with Vista, there’s so much to learn.  We are still planning to get the drives for the Mac – Brenna needs a new laptop, and this is easily the cheapest way to go – but I will never have a Mac again.  I know there are Mac lovers out there, but I’m definitely not one of them!

9/9/09

I just love that number, I had to type out the year too :)  So, backing up to Monday, we did make it to the happiest place on Earth, or I should say, the busiest place on Earth!  We first made our way to California Adventure, which was really uncrowded and gave us false hope for the rest of the place.  I don’t know why CA is not busy – they easily have the best rides of the whole place – but, still, we had fun. 

We rode California Screamin’ twice, the Midway twice, Soarin’ over California twice, and Ailish and Kieran rode Tower of Terror twice, though they had to switch off parents, and we convinced Brenna to ride it once.  As for Disneyland, our luck was not as good.  Space Mountain, the only ride I wanted, was hopelessly crowded, even with the “go to the front of the line” pass that Ailish gets us.  We never did make it on there.  I finally got so frustrated with Disneyland that I went out to Downtown Disney while Brad took the girls on a few rides.  They only made it onto a few of them.  It’s okay, we’ll be back in a few weeks for the Halloween reveal.

9/13

Wow, it’s so hard to believe another week has passed.  It’s been such a busy one, with the start of both Brenna and Kieran’s school.  It was quite a whirlwind!

Tuesday, after dropping Ailish off, I tried to take Brenna to a “First Day of School” park day for her online school program.  Unfortunately, we had to drive past her old high school to get there.  I looked over at her as we drove by, and she shed the smallest tear.  She hates to cry, so any show of emotion is huge for her.  I asked her why she was crying – she herself had said several times how much she hated her high school  classes.  She couldn’t explain it, but I managed to extract that she was missing the friend she had made.  I told her I would do everything I could to help her maintain this friendship, and offered that maybe she’d like to get together with her friend soon.  The park turned out to be a wash, as the high school teachers were not there, so we headed back home to see what we could do to get her started.  We were in much the same situation as we’d been with the regular high school – since we’d started the registration process so late, nothing was quite lined up right on the first day of school.  She did her best to work through the classes she could.  I also had to keep Kieran occupied, as her disappointment over the one day delay of her new school was nearly too much to bear.  She was a little placated by “Meet the Teacher Night,” which we had rushed to make after her swim practice ended.  She was excited by her new classroom and found it hard to get to sleep that night.  I think I was just as excited, because I barely slept!

The next day finally arrived, and, though I discovered that it is not possible to take both Kieran and Ailish to school myself (since both schools start at exactly the same time, and the traffic to Ailish’s school makes it impossible to drop her off early), both girls were on their way.  Kieran was quite excited to get started, even if she was mortified that I had to take pictures of her before I would let her go inside!

Once I got home, it was time to start Brenna’s schooling in earnest.  It is much more complicated than we had anticipated.  I think it’s just all of the starting, onboarding is the word they use, and the web rooms she needs to be in at certain times, that make things really complicated, but the promise is that after the first three weeks, she’ll have much more flexibility.  I hope so, I think.  On the one hand, it will be good not to be tied to the computer for eight hours straight, but on the other, I like that someone else is setting the schedule and it’s not me having to tell her what to do.  I want to avoid as much school-related conflict as I can.

Kieran loved her first day of school - she said she wanted to live at school, which I'm not sure says as much about school as it does about our home life right now, but I am *so* glad that she's happy!  Even though teddy still accompanies her to school, I know that we did the right thing, and I can just feel this will be a good year.

Wednesday night was our first experience with Kieran’s swim schedule and how it will pair with school.  It doesn’t pair well with all of the pick-ups at once, but thankfully Ailish’s friend’s mom is willing to drop her off at home.  That way I can pick Kieran up, have her change in the car, and drive her straight to swim.  Thank goodness she doesn’t have homework!  I think it was around Wednesday night that we began to notice Brenna’s mood shifting.  Usually she’s more to a depressed kind of state, but she began to get more giddy on Wednesday.  She was giggling for no reason, bursting out in song, dancing around the room.  I was afraid the next few days were going to get more and more interesting.

Thursday was a busy day because I was trying to prep for my first Girl Scout Leader Meeting of the year while simultaneously trying to keep Brenna on task on the computer.  I felt so out of whack – I couldn’t keep my focus on anything for long, and I hate prepping for something feeling as if I’m always playing catch up.  Not a good way to start the year.   In the midst of the day, Brenna had her physical, which brought some good news.  She has gained 26(!) pounds since January, and grew four inches in the last year.  I was so happy to hear that.  She’s still low on the percentile for both height and weight, but knowing where we came from just 8 months ago, I’m thrilled at the progress she’s made.  The downside for her was that she had to get a shot and a blood draw, but really that was an upside, because she needed to pay off her debt to us and earn enough money for a movie ticket to go with her friend on Saturday, so it all worked out in the end.  Once the appointment was over, I had to race her home so I could get on the pickup track again.  I was essentially taking Kieran to swim, then dropping her off at home, grabbing my Girl Scout stuff, and racing to the meeting place.  Brenna seemed somewhat calm, so I told all three girls to do their best to stay away from each other and hopefully, since he did not have a meeting that night, Brad would be home soon.  Unfortunately, though, just as the meeting got underway, my cell phone rang.  This would be fine if I weren’t the one actually running the meeting!  I asked Sandy, sitting next to me, if she could answer it as it was from Brenna.  After several moments of conversation, Sandy came back and said she needed to go to my house as there was a crisis.  I didn’t know what to do.  I knew I should have dropped everything and run to the house myself, but I was standing there in front of all of these women, and even though I know now that rationally they could have done the meeting without me, I froze in that moment.  Sandy took off, and I did my best to rush through the information I had to give, all the while checking my phone for updates and to see how long she’d been gone.  After a half hour, I excused myself and started for home, just as Sandy pulled up.  Thankfully, there was no violence involved – it was an argument between Ailish and Kieran, and Brenna overreacted, but that’s okay, it was understandable.  More than anything, though, it made me realize just how fragile Kieran is right now.  She’s really hurting, still trying to adjust from being the only kid in the house to having to share a room with Ailish, having to share every bit of space with two sisters she can’t trust – it’s just a lot to put on a 9-year-old.  Since she acts like she’s 35 most of the time, I forget just how young she really is.  And on the other side of that, I have to continually remind myself that leaving all of three of them at home is pretty much a recipe for disaster.  I can leave one or two, and as long as they don’t answer the door or cook anything, they will be fine, but three of them together is just asking for trouble.  Somehow I can’t seem to make my brain remember that even though Brenna is nearly 14, and Ailish is 12, they really aren’t as functional in that realm as their ages make them out to be.  They can do okay, but if there’s the slightest bit of crisis, they panic, and that’s a problem.  Sigh. 

Honestly, I just don’t know what I’d do without Sandy.  I thanked her profusely, but that just doesn’t seem like enough.  She drops everything to help, and I always feel so bad, but she just jokes about it, gets me laughing, and we move on.  Without getting too sappy or gooey, because I know how much she would hate that, I am forever grateful that she came into my life.

Friday was another insane day.  I needed to get prepped for Kieran’s troop’s first meeting of the year.  I also need to get adjusted to the idea that every Friday will be a minimum day for her.  It’s a nice break for her, considering the breakneck speed at which she has to transition from school to swim every day, but when I forget, and I look at the clock and realize I have 8 minutes to get to her school, I travel at my own breakneck speed!  We had a lot to do that day, capped off with running straight from swim to Girl Scouts.  I am quickly getting the sense that something has to give, and I know what that something is, but I made a commitment to stick it out until July 1, so this year is just going to be a particularly crazy one.  I still believe in scouting – I believe in all of the good things it can do for girls.  But when we’re trying to fit it in amongst our lives, and I’m trying to ration out what is important enough to warrant my energy and attention, there may not be enough left for one more thing.  I don’t know – it’s something I’m pondering.  I don’t like that I have to ponder it.  I love my girls in my troop and want them to have every opportunity, but sometimes it’s just more than I can handle on my own.  Sandy, yet again, has been amazing, co-leading with me, and Alysha is so cool to the girls, I know she is their favorite leader.  But I still don’t know – it might come down to decision time sooner or later.

Friday night, Brenna was up for most of the night.  On my check-ins with her, I did my best to keep her calm, coax her to bed, but she said she couldn’t sleep, couldn’t be still, couldn’t stop thinking.  I dozed throughout the night, but it was not an easy sleep.  I woke up Saturday morning feeling awful.  Between the lack of sleep and an apparent virus I caught, I knew I wasn’t going to be able to make the Girl Scout Task Force meeting I was supposed to attend.  I went back to sleep for several more hours, hoping that the girls would sleep in also.  Ailish was up early, though, as she had plans to go to the mall with her friend.  I got myself together and took her to her friend’s house, then went home and crawled back into bed.  Brenna was up and raring to go, excited about the movies and sleepover she would be having that night.  By this point, Kieran was bummed out that she didn’t have anyone to hang with, so she tried to call her friend, but could only leave a message.  I then got a call that Ailish would not be able to go to the mall with her friend – could I take them when I took Brenna to the movies?  Within a few hours, I had three girls with three friends all at the mall.  As excited as I was for them to have friends, especially for Brenna and Ailish, I was not feeling well at all, so it was a struggle to keep up with everyone.  Thankfully, Ailish and her friend could wander a bit with their cell phone tethers attached.  And Kieran and her friend had only two goals in mind – spend an hour in Claire’s and spend the rest of their money at the candy store.  By the time we got home and got dinner made, I did my best to crawl into bed while Brad helped the girls (including Brenna’s friend) serve up dinner.  They all played rousing rounds of Rock Band until it was bedtime.  Things were going really well, from everything that I could tell, but I could never fully relax.  Every noise I heard, I couldn’t be sure if it was a good noise or the start of an argument between sisters.  I didn’t know if Ailish would let go of her disappointment about not being able to have her friend over on the same night, or if she’d try to retaliate in some way during the night.  And Kieran, just being her boisterous self, I didn’t want her to find herself in trouble with Brenna or cause Brenna to melt down in front of her friend.  As much as the night itself was an accomplishment, and as much fun as they had, I was very anxious throughout the night and the next day.  Though I was feeling better Sunday morning, and I was able to make pancakes for everyone, I was still exhausted.  Thankfully, Ailish was able to meet back up with her friend, and Kieran got to have a playdate at her friend’s house, so the house was pretty much left empty for Brenna and her friend.  Finally, at around 4:00 p.m., we called it a day.  By dinner time last night, everyone had returned to the roost.  Brad made cheeseburgers, and back to bed I went. 

By today, Brenna had lost all aspects of the mania.  She was completely depressed, devoid of emotion.  Even though everything had gone well.  I don’t know if it’s the natural swing or if she’s just sad that all of that anticipation is over.  I encouraged her to make another date with her friend for a movie or something, but I don’t think they’ve worked it out yet.  It’s just so hard to see her in this state.  I suppose it’s better than an aggressive, angry state, but the depression is so painful to see.  I want to help her so badly, and yet I can’t get in.  She's swung back around to a more animated state tonight, thank goodness, but we'll see what tomorrow brings for us.

This week will be an interesting one for all of us.  I am leaving Wednesday morning for Minneapolis to teach for Cropper Hopper at ScrapFest.  I am excited to have another opportunity to teach, yet with everything going on with the girls – Brenna still getting used to her new home school routine, Kieran still getting used to her new school routine, and Ailish still needing attention, I hope that the week goes well.  I won’t be home until late Sunday night, so it’s a long stretch.  I’m hoping to use the downtime in between classes and vendor gatherings to work on the book.  If I am unable to run around like a headless chicken, maybe just maybe, I’ll be able to get my thoughts together!  I’m pretty sure I’ll still have the cell phone tether firmly attached.  I’m just going to wish for smooth sailing.  Pretty please...

Butterfly

I had a post completely done.  I used to write my posts straight on Typepad, but I learned through the years that sometimes posts would just disappear when I went to hit send, or my internet connection would die and I wouldn't get it back, etc.  So for a long time now, I've written my posts first on my computer, then cut and pasted when I was completely done.  I know Typepad has made many improvements, including auto save, which is awesome, but I like having a back up now of my posts, that they are in two different places, in case one happens to get lost.  But back to my point - my post was done.  It was six pages long in Pages, and I was just waiting to process a few photos to add to the post to illustrate a few of the points I made along the way.  It was beautiful, and eloquent, and truly, one of the best posts I have written in awhile.  So why isn't it here?  Because my Mac died, taking that post, and the photos I just uploaded (because I hadn't done my Time Machine backup yet) with it.  Before we get into a Mac vs. PC debate, I have to say, we are a PC family.  I got a Mac because I did a lot of research and found over and over again that Mac's were far superior in processing speed when it came to photos.  I'm not sure I'd agree with that - I never saw a noticeable increase in speed, and my Mac has had issues nearly from the get-go, and I haven't been able to get Apple to honor their Apple Care agreement, so it's been frustrating.  However, I paid significantly more for my Mac than I would have for a PC, so I'm trying to get every penny I can out of it.  Not to mention, with oh, I don't know, braces and water heaters and the ever expanding feet of the girls, there are more immediate needs in the family.  My favorite part about this recent experience is that I called the Apple Store near me to see if they had the number for my Apple Care agreement so I could make the appointment online.  I couldn't find my number and I was having a moment.  He pulled up the number, but wouldn't give it to me.  So I asked if I could make an appointment.  He told me normally they don't do that - you have to make the appointment online.  But I can't make an appointment without the apple care agreement number.  Finally, he offered, "Just this one time," to make an appointment for the genius bar.  For Saturday.  Ugh.  I'm sure it will be a problem not covered by the Apple Care agreement, and then I don't know what I will do.  I do know I will never buy a Mac again, and no one can convince me otherwise.  I know y'all love your Macs, and I appreciate what they could be, but you know what they say, once bitten twice shy.

I am going to try to reconstruct what I wrote, but I'm positive it's not going to be as eloquent as the first go round.

The point was that we've learned many things over the last two weeks about Brenna and Ailish's school programs.  During Back to School Night at Junior High, we got to visit each of Ailish's classes and learn more about her program.  We could see why Ailish complained about some of the classes being too easy, and we resolved to contact the case handler to see if we could get her mainstreamed into her stronger classes.  She is doing so well in Junior High, she is really loving it, and I want her to have every opportunity to experience it in a mainstream environment that she can.  It's been so amazing to watch her blossom.  She went to her first Junior High dance, and as we were driving there, just the two of us, she said, "Mama?  Did you ever think I would get here?"  It was just 12 months ago that we were reeling from the last major psychotic episode, from attacking Kieran, from checking her in to her third residential placement.  Did I think she would be where she is today?  Not one bit.  I said, "Honestly, no, honey, I wasn't sure it would happen."  "It's pretty cool, huh?"  I think that was the understatement of the year.  It's more than cool - it's a triumph, an absolute victory.  There's that little voice inside my head that says don't get too carried away, the very nature of their issues is that it's relapsing and remitting, so things will always be day to day, but *because* of that very reason, I'm going to savor every second of the good stuff.

As for Brenna, unfortunately, it's a different story.  Last week, I got Brenna's report from her state exams.  In grade school, no matter how many missed assignments she had, Brenna always scored off the charts in every subject.  Now that we're dealing with junior high subjects, and she's up against something she has to learn, her deficits are starting to come through.  She still scored very high on Language Arts and Social Studies; however, Algebra scored Below Basic, and Science was so low, we didn't even realize there was a science score on there until we'd looked at the results several times.  Without wanting her to feel bad, because we know this is not about intelligence, it's about not being exposed to the subject material, we asked her what she thought was the problem.  Algebra and Biology were the two classes she missed the most due to not getting up in the morning, and the ensuing time spent in the Intervention Unit.  She was given the homework but refused to do it. (Yes, that part is her fault, but I can understand that it would be difficult to do if this is new to her, she's not used to having to try to understand something because everything has always come so easily to her, and when faced with an obstacle, Brenna's tactic has always been to just shut down.)  So she missed HUGE chunks of the material, which put her far down on the scale.  Now remember, we fought to get her placed in the regular ed high school, but then we were shocked to learn that her classes would be at a "basic" level which would not qualify her for a 4-year-college.  We figured okay, what choice did we have?  But then when we began to hear reports from her about how her days were going - like the fact that she did 5 minutes of work and then sat for 50; that she was allowed to text, listen to music, and sleep during class; that though I paid $50 for her P.E. uniform, she wasn't required to dress out.  No, for P.E., she was allowed to sleep.  I guess their only goal with these kids is to get them to pass the California State High School Exit Exam, something that was instituted a few years ago to ensure that every student who received a diploma actually deserved it, but the test is rudimentary at best, and that is just not enough for me.  I didn't know what to do.  How much could I fight with the school district to get her placed in mainstream classes?  Her records were a mess, she was more than likely going to start out behind in two or three classes, and who knows how that would look in the classroom, if she'd keep it together, or if she would act out, not to mention the homework requirements.  I weighed my options.  I knew that Kieran's home school program had a high school component.  If you look at it from far away, it is the perfect situation.  She can sleep in and work on her schedule.  She can take a break if she gets overwhelmed.  She can work at her pace, and she doesn't have any leftover busywork to take home.  And we eliminate the social aspect that stresses her out.  However, there's a big if.  If she decides to do the work.  If she decides to listen to me.  If she wants to succeed, because honestly, I could drag her there, but I cannot work harder than she does.  Big big ifs.  I went back and forth over several days. I knew that I could be committed to it, but I didn't know about her.  And the worst part was, we were backed up against a deadline.  If we didn't get her enrolled and started by the 8th, we would have to wait another semester before we could switch.  That was actually the final straw for me - I knew if we waited that semester, Brenna would be even further behind, and have even less of a chance to succeed.  For days, I wondered if Brad and I were in denial, or if Brenna was caught in the system where everyone else had given up on her, and we were the only ones who believed in her enough to do something drastic.  It's not that we think she's Ivy League-bound, but to limit her options so severely just seems like it's punitive.  How is she supposed to succeed when the only options available to her are fast food?  For such a bright girl, it seems to me that she would become so frustrated, she might turn to a path of bad choices, and I couldn't forgive myself if I didn't at least try to give her every opportunity.  So I did it - I enrolled her in the homeschool program.  I withdrew her from the high school.  Her last day there is today.  She starts her homeschool program on Tuesday.  It should prove to be an interesting journey, but my best hope is that she gets a chance to recover and regroup, she can catch up on what she needs to continue on with upper level courses, and she can spring ahead in the subjects where she is most advanced.  I'm hoping too that we can repair our relationship a bit at the same time.  Those are my goals - we'll see if we get there.  I know she wants to do this, but when we're stuck in the moment, I'm not sure if that's going to happen.

We got good news about Kieran last week - finally!  She was accepted into the charter school, and we are so thrilled.  Funny, though, because it really took her some time to adjust to the idea.  We'd been working so hard to build up homeschooling that it was hard to let that go, but especially with Brenna home, Kieran needs her own space to grow and learn and feel comfortable.  Kieran also started swim again this week, woo hoo!  After three weeks of vacation, which were preceded by two weeks sidelined by injury and illness, she was downright cranky!  She is in a much harder level now, and I was a bit worried about her, but she has done really well.  I am so thrilled that she was able to be with the coach she's with, because she really respects him, and I know she's going to thrive.

We were able to get Ailish mainstreamed into a history class, which started today.  We told her that we didn't want to stress her out, but that, having seen Brenna's situation, it was more important than ever that she work her way out of any special ed classes and hopefully be completely mainstreamed by the time she reaches high school.  It still angers and saddens me that the school would see these kids who are "special ed" and think they are stupid.  They are everything but stupid.  And the labels that we fought so hard to get so we could receive services, now they are albatrosses, things we need to prove can be shrugged off, so that they can have any possibility of a future.  I hope that Ailish can keep it together and thrive through all of the changes - it is so important, and I hate that in 7th grade, her whole life depends on how she does, but it really, truly does.

Last weekend, to get out of the smoke and heat, we decided to take a family trip up to Santa Barbara for the day.  It was still quite hot there, it even reached 101, but it wasn't nearly as smoky or as hot as it was here, so it was a relief.  While we were there, we went to the Natural History Museum to see the Butterflies Alive exhibit.  I love this exhibit.  I love seeing the diversity in colors and patterns, things we never get to see here, as Monarchs are the only ones we get to see during their migration to and from Mexico.  The girls all wanted a butterfly to land on them.  They got themselves into different positions, holding their finger outstretched in front of them, trying to telepathically woo a butterfly to come and visit.  It was there that I realized Brenna is my butterfly.  She is beautiful, she has gone through so many life-changing events, she goes from subject to subject quickly and without direction, and she's not something I truly understand.  Just when I think I've gotten a hold on understanding her, she flutters away again.  It's who she is.  Somehow I just have to channel that image of a butterfly whenever I'm getting frustrated with her.  I need to remember that she would control it if she could.  She would calm down if she could.  Not that I'm relieving her of all responsibility, but more that I have to always remember, she's not doing it to me, she is just doing it.  Just like those butterflies, they weren't ignoring the girls on purpose, they just had their own agenda, even if they weren't even sure what that agenda was. (see where my beautiful photos would have illustrated the point?)

I think that was the essence of the post.  There were some details about my latest medical saga, but that's not important.  We are embarking on a new journey here, and that's the most important part.  I'm going to get myself in the right position and pray the butterfly decides to join me.