More than words

Marching On

For those days we felt like a mistake,
Those times when love’s what you hate,
Somehow,
We keep marching on.

For those nights when I couldn’t be there,
I’ve made it harder to know that you know,
That somehow,
We’ll keep moving on.

There’s so many wars we fought,
There’s so many things we’re not,
But with what we have,
I promise you that,
We’re marching on,
(We’re marching on)
(We’re marching on).

For all of the plans we’ve made,
There isn’t a flag I’d wave,
Don’t care if we bend,
I’d sink us to swim,
We’re marching on,
(We’re marching on)
(We’re marching on).

For those doubts that swirl all around us,
For those lives that tear at the seams,
We know,
We’re not what we’ve seen,

For this dance we’ll move with each other.
There ain’t no other step than one foot,
Right in front of the other.

There’s so many wars we fought,
There’s so many things we’re not,
But with what we have,
I promise you that,
We’re marching on,
(We’re marching on)
(We’re marching on).

For all of the plans we’ve made,
There isn’t a flag I’d wave,
Don’t care if we bend,
I’d sink us to swim,
We’re marching on,
(We’re marching on)
(We’re marching on).

Right, right, right, right left right,
Right, right, right, right left right,
Right, right,
We’re marching on.

We’ll have the days we break,
And we’ll have the scars to prove it,
We’ll have the bonds that we save,
But we’ll have the heart not to lose it.

For all of the times we’ve stopped,
For all of the things I’m not.

We put one foot in front of the other,
We move like we ain’t got no other,
We go when we go,
We’re marching on.

There’s so many wars we fought,
There’s so many things we’re not,
But with what we have,
I promise you that,
We’re marching on,
(We’re marching on)
(We’re marching on).

Right, right, right, right left right,
Right, right, right, left, right,
Right, right,
We’re marching on.

Right, right, right, right left right,
Right, right, right, left, right,
Right, right,
We’re marching on.

OneRepublic – Marchin On

I put OneRepublic’s latest album, Waking Up, on my Zune a couple of weeks ago, but I hadn’t yet had a chance to listen to it.  Usually with the girls in the car, we just listen to the Zune Billboard Channel, and lately we’ve been grooving to Jason Derulo, Jay Sean and Kesha.  Oh, and one very guilty pleasure – David Guetta.  I know it’s a terrible song to play around pre-teens, but I just love the beat.  Anyway, in our journeys from home to school, school to swim, swim to home, that’s about all that is played.  But if I’m in the car alone, I’ll put my Zune on shuffle and see what it gives me.  Oftentimes, it is like a message, like my own personal soundtrack.  Yesterday, on my way to pick up Brenna from school, knowing that I was going to have to tell her about our decision, this was the first song to come up.  I sobbed as the song washed over me.  The words were straight out of our lives.  For many years, people have said to me, “How do you do it?  You are so strong, how do you get through the day?”  To which I respond that I don’t have a choice but to put one foot in front of the other.  But beyond that, that which got me listening in the first place, the verses about doubts, about letting each other down, about all the things that we’re not, oh it spoke to me, to our family, as if they’d been here, witnessing everything that we’d been through in the past six months, in the past fourteen years.

If you have found yourself here because of Dr. Phil’s show, thank you for taking the time to get to know us better.  Please start at the beginning of the blog, May 2005.  It is not the beginning of our story, because it began long before that – it really began the moment Brenna was born, almost fourteen years ago.  But technology finally gave me a place to write my feelings down, and for this part of the story, please begin there.  At the very least, go back to August of this year – we taped the Dr. Phil episode in August, which seems like a lifetime ago.  Before Brenna developed disturbing new symptoms, before her psychosis took over.  When we taped that episode, residential was the furthest thought from our minds.  We truly believed that even if it was rocky, we would be able to get through it together as a family.

Please know that we have tried everything.  Though I don’t write about it here, the girls were tested extensively for food allergies when Ailish was two due to her severe eczema.  At the time, we discovered that Ailish was allergic to all *but* ten foods, and she was on an extremely restricted diet for three years.  We all were, actually – no one in the house ate wheat, rice, soy, dairy, most fruits and vegetables, or a lot of meats.  We went back to old grains like spelt, kamut, and millet, and everything was made from scratch – no processed meals were allowed.  Though it did a great deal to clear up the girls’ skin issues, behaviorally, it did not make a difference.  Brenna actually became much worse during that time, and Ailish’s anxiety was still off the charts – probably even more so at that point because of her fear of foods.  When she was five, we tested again, and though she had some allergies, nothing except for nuts came up strongly, (she still has strong environmental allergies to trees, weeds and grasses), and the doctor and I both felt it would be better for her to have food back in her life so that she could interact with her classmates and have a more “normal” existence.  Putting those foods back into our lives did not seem to affect them physically or emotionally, but it did help a lot with what we were able to eat, and the places we were able to go.  However, I can say without a doubt that the girls do tolerate gluten, that they aren’t affected by the foods they eat – I truly wish it were that simple.

Please also know that as far as discipline goes, we have tried everything.  I am known among my friends for being strict, for being consistent, for following through on every consequence I threaten.  When Brenna was young, we read every disciplinary book we could get our hands on.  The only one that helped at all was "The Explosive Child," which gave us tools to decide what things were truly important.  We've learned, however, that there is nothing, not motivation nor punishment, that motivates Brenna.  We saw it time and again in residential as well.  They would strip her room, thinking she would behave better in order to earn her things back, and she would never even try to regain them.  They would put her in the quiet room for solitary, and she'd stay there all day long.  She told them she liked it, do it again.  It doesn't matter to her - you can take away the TV, phone, computer, books, clothes, all of it - she truly doesn't care.  If Brenna wants to do something, she'll do it.  If not, there isn't anything that's going to change her mind.  I still follow through on my consequences - I need to do that, if only for Kieran and Ailish's sake, as they watch us struggle to deal with her.  But for Brenna, no - it doesn't work that way.

After a lot of very difficult thought, and a very long and difficult week, one in which Brenna begged us to take her back to the hospital because she couldn’t take it, we have made our decision, and we will be placing her back in residential.  She will be going to a new place.  I would like to believe that it is everything the brochure claims it to be – I know enough now to know that until she’s there, until she encounters difficulties and we see how the staff handles it, we really don’t have a clue what it will be like.  It is in Denver, so the one advantage is that we are already familiar with the area, that I really like the area, and I know how to get around it.

It’s funny, because I knew this was coming.  We’ve known since Brenna’s IEP that this was going to happen, and I worried that no one would accept her because of her issues.  It felt like we were in limbo, waiting for anyone to give us a definitive answer.  Now that we have it, the finality of it carries a huge weight.  As I shopped for groceries yesterday, and instinctively grabbed snacks that only she likes – dried apricots, dried cranberries, chocolate chip granola bars – I remembered with a jolt that we would only need a week’s supply.  I stood there, crying in the aisle.

Kieran stayed home from school yesterday, and heard my conversation with the admissions director, so she knew before Brenna or Ailish did about what was happening.  She cried and asked me why it had to be like this.  She cried that we couldn't possibly have Christmas if we were going to be separated again.  I asked her, if Brenna were in a wheelchair, would we all have to be in a wheelchair to feel like we cared about her?  We couldn't give up on living just because Brenna couldn't be with us.  She nodded.  I don't think either one of us were convinced.  Earlier in the week, she said it hurt so bad to open her heart and believe that her sisters will be nice to her when they are having a good day, only to have them turn and be so cruel to her just a day (or even hours) later.  I understood that –I have struggled with those same emotions more times than I care to think about.

All week long, Brad and I have struggled with this decision.  In her good moments, we think, are we being too hasty? Maybe another medication would help, maybe she just needs time to settle down, maybe we can try this or that.  Maybe we don’t have to spend another holiday apart.  And then, over seemingly nothing, she’ll start growling.  She’ll break something.  She’ll scream at her sisters to get away.  She’ll text me, begging to go to the hospital.  Or I’ll discover more of the stress that her sisters are under.  Like Ailish, who had a wonderful holiday concert but had a complete meltdown afterwards.  Why?  Because we complimented her, because we brought her flowers, because we tried to take her out for a celebratory dinner.  She said she was a screw-up, that we didn’t see how many mistakes she’d made, that she was going to flunk out of English (in which she currently has an A – she has straight A’s, actually), that she was going to fail like Brenna was, that she would fall apart, and why couldn’t we see that?  Like Kieran, who couldn’t go to school yesterday because her friend wasn’t going to be there, and her friend was the only one who understood why she cried through recess and lunch.  She cries through recess and lunch.  She locks herself in the bathroom here and cries.  She wraps herself around me at night and cries.  No matter what little things might change in the next week, I know we only have one option, and that is for Brenna to not be here, and it breaks my heart.

It’s so strange to switch from “everyday” mode to thinking of her on a “home pass” mode.  Rather than worry about chores not done, I’m thinking comfort foods.  I’m trying to think if there’s anything I could make for her before she leaves, any last home dishes she might crave.  Last night, partially because Brad has a bad cold/cough (flu?) and partially for Brenna, I made chicken and ducklings (which is how Ailish pronounced it when she was 2, and it has just stuck.)  Last week, Brenna helped me make homemade meatballs, one of her favorite things to cook.  In the past week,  I have made pot roast and fried chicken, two more favorites.  I’m trying to fit all of those things in there, things she can hang onto on bad days, things I can hang onto, knowing that I tried to make her last week a good one.

Brenna was nonplussed by the news.  She just said okay and went back to her computer, playing vfk with Ailish and her friends.  She ran around the house happily, telling Ailish to meet her in this room or that.  Brad tried to talk to her about it later, and she was again unemotional.  It wasn’t until this morning, when I played the OneRepublic song for her for the first time, that she broke down.  She put it on her playlist.  It was a very cold and rainy day here yesterday, and colder still this morning, though the sun was shining.  In the distance, we could see the mountains covered in snow.  As we commented on them, Brenna said quietly, “There’s a lot of snow in Colorado.”  I think it’s all just sinking in.

One of the questions I get asked quite a bit is why do I put this all out there.  Why do I have this blog, why did I agree to put our family on Dr. Phil, what is the point?  Long ago, I stopped looking for the great answer.  I used to think there was one – I used to think that there had to be a pill, a therapeutic method, a place, a solution that would fix this, that would give my girls a shot at beating back the illnesses they face every day.  I thought if I just fought hard enough, I would find the solutions.  The older they get, the more I realize that it’s an ongoing process, and there is no easy fix.  There is no permanent answer.  Just when you think maybe you’ve found the right combination, they grow, their bodies change, they get out of sync again.  New pressures face them, new things set them off.  And sometimes, as in Brenna’s case, new disorders rear their ugly heads.  I thought I knew just about everything there was to know about the girls’ disorders, but Brenna has shown me in the last three months how very little I know.  She confessed last week that she’s had these voices for years, but she could fight them off before.  She hadn’t told us because she didn’t want to scare us, but now they are so big and so ugly that she can’t fight them off anymore.  It hurts so much that she thought she had to carry this on her own.  So my point, in writing, in going public, is to say to those who are suffering that you aren’t alone.  There are other families out there in the same situation, fighting every step of the way.   To those who believe that our kids can be cured with diet or religion or discipline, I believe that each of those has some merits, but it isn’t the answer.  It doesn’t fix the problem.  Without them, it might make things worse, but what my girls have is a physical disability – it just happens that we can’t “see” it.  I just want people to understand that, more than anything.  They would behave, they would do what they’re asked if they could, and at times, they can be amazingly funny, brilliant, cooperative, loving girls.  But when the demons come out, when the moods turn dark, they aren’t responsible for that.  My girls would do anything not to have these disorders, would give anything just to feel “normal.”  We do the best we can with what we’ve been given.  That’s all we can do at the end of the day.

We put one foot in front of the other,
We move like we ain’t got no other,
We go when we go,
We’re marching on.

Long Weekend

It wasn’t long ago that I wrote about my love for cooking the Thanksgiving meal.  Though they are not the recipes of my childhood, I have been using the same turkey and gravy recipe for most of my adult life.  Thanksgiving is my favorite meal to make of the whole year, and, back in June, when I envisioned our family back together again, I was looking forward to that day more than any other.  Being able to cook for my family, being able to see all five of us around the table.

When we picked Brenna up on the eve of Thanksgiving, I was really hoping she would be able to keep it together for the next day.  I knew she wasn’t stable.  I knew the meds were not right, but we didn’t get a choice in the matter – it was the insurance company’s decision.  At the time, I thought all for the best – either way, having her home or in the hospital, would make it a different Thanksgiving.

As soon as I woke up, I got to work.  I made the cranberry sauce in peaceful silence, and prepped the second batch of cranberries for Ailish’s favorite cranberry salad, which is a call back to my own childhood.  Cranberries, crushed pineapple, marshmallows and Cool Whip.  It’s a big favorite around here!  Somewhere in the midst of trying to proof the yeast to make dinner rolls, girls started moving around, coming downstairs to say good morning, take their meds, have a little breakfast.  As I prepped the turkey (which is my least favorite part of the meal – separating the skin from the meat just sends chills down my spine, but it is so important to do to get the herbs and orange zest and butter into the meat), the girls asked what they could do to help.  I wanted to get the dining room table freed from my paperwork disaster and down to the front room, so we could have a nice, proper meal.  The girls asked if we could use the good china, absolutely.  Kieran and I dug through my decorations to find the Thanksgiving candles and placemats.  Brad and I carried the table down to the front room.  Brenna offered to make place cards – I thought that was a great job for her.  While she worked on that, Ailish scrubbed potatoes.  I began to think that maybe it would be a good day after all.  The turkey and stuffing baked, the potatoes were whipped up into a heavenly mixture of cream cheese, butter, heavy whipping cream and starch, and the gravy was the best I ever made.  But somewhere in that last hour of cooking, the world tipped over a bit.  Kieran was trying to find a place to put her glass at her spot, and she moved her place card by an inch.  Literally an inch.  That was enough to send Brenna over the edge.  She stomped upstairs to me and said she was angry.  I said okay, we could fix it, but apparently, we couldn’t.  She stormed further upstairs, and Brad tried to calm her down, but she ended up in the girls’ bathroom, screaming at the top of her lungs, kicking and punching the door.  Of course – this all began just as I pulled the turkey out of the oven.  Ailish and Kieran were starving, so I asked Brad if he could carve it up so we could at least try to sit down and eat a little. 

 
It was difficult with the screaming and pounding going on.  I didn’t want this to be the way we “celebrated.”  I told them that I was so proud of everything they had accomplished that year.  This was Ailish’s first Thanksgiving at home in four years, and she had come so far from even a year ago.  I wanted her to know how thankful I was for her being home.  And for Kieran, I was so proud of her accomplishments in swim and at school.  But truly, it was hard for us to hear each other with the noise in the background.  Everyone murmured that it tasted good, but we’d all lost the heart for it.  We finished up and began the task of cleaning up the food.  I was exhausted, but under the circumstances, I knew the girls would need direction to keep going on putting food away and getting dishes done.  Just as we had put the last container in the fridge, Brenna appeared in the kitchen.  I don’t even remember what I said to her – I was trying to be as neutral as possible, but she launched a tirade of expletives at me.  This was new.  I wasn’t shocked by the words themselves.  I have a potty mouth, although I don’t use those particular words unless I am extremely angry.  It was the venom with which she spat them at me.  The look in her eyes.  Ailish and Kieran scurried to me, as if they could hide under my invisible apron.  I told her I was sorry she felt that way, and she dropped one more f-bomb followed by “YOU!” and stormed back upstairs.  She came back downstairs to tell me she was going to kill herself.  I didn’t even know what I was supposed to say.  She stormed back to her room and threw open the window and started pounding on the screen.  I sent Ailish and Kieran down to the garage (so they wouldn’t see anything, just in case, God forbid) while Brad literally wrestled with Brenna to make her stop.  We spent the rest of the night in separate quarters.  Brad and Brenna upstairs; Ailish, Kieran and I downstairs.  The girls asked me if we could please not put the tree up the next day, as is our usual tradition, because they didn’t want Brenna to have a meltdown and ruin it.  I sadly agreed.

Ailish had asked me if we could go out for the Black Friday sales, like we’d done in Colorado the year before.  Even though she didn’t want anything for Christmas (she’d gotten the laptop for her birthday/Christmas present), and even though Kieran didn’t want to celebrate it at all, Ailish said it was her favorite part of Thanksgiving, to go out with me.  I didn’t really want to go, but I wanted to give her one happy memory, so I woke at 3:00, and she sprung out of bed as she promised she would.  We spent the majority of our purchases on stuff for Brenna – a new suitcase, new shaver (she can’t use razors in residential), shirts and sweaters, boots for the snow.  I did get Ailish a new pair of boots, and bought a new blanket for Brad.  It wasn’t Christmas shopping as much as essentials – but I did really enjoy my time with Miss A.  She was losing steam, so I took her home, and she crawled back into bed.  I couldn’t go back to sleep.  I ended up going to Kohl’s for just one more thing, and ended up standing in line for an hour, but at least it was peaceful.  It was more than I could say for what was going on in the house.  By the time I returned, there were battle lines drawn.  I decided to bring out a craft to keep everyone occupied and hopefully restore some peace.  Two Januarys ago, I found Advent boxes on clearance at Target. These were by Memories, and had precut papers, rub-ons, buttons, flowers, and brads, and they are so pretty.  I had found three, and thought they’d be great so the girls could each have their own box.  The girls ooh’ed and ahh’ed when I brought them out. 

 
While Kieran and Ailish got right to work, Brenna was frustrated.  She wanted things to be perfect, even though I explained that imperfections were the whole point.  That did not soothe her at all.  She stomped upstairs.  While the other two worked on theirs until they were finished that afternoon, Brenna repeated this same scenario several times throughout the weekend.  By this morning, there were still 8 boxes to complete.  I told her she didn’t have to finish – that it was supposed to be fun.  Part of me wonders if she won’t finish because she knows she won’t be here through Christmas, but I don’t know if she’s able to think that far ahead.  Her brain is so muddy right now, I would be hard pressed to second guess any of her thoughts.  Still, the weekend generally went like this.  Brad and Brenna stayed in our bedroom.  Brenna was set up on her laptop, and only came out to grab food and go back to the room.  In her forays outward, she would find some reason to scream or growl at one or the other (or both) of her sisters.  I would intervene.  She would yell at me.  Stomp back to her room.  Ailish and Kieran played Mario Kart most of the time, save for the times when I took Kieran to swim laps at the aquatic center.  We just discovered on Saturday that Kieran was entered to swim a 500 yard race at her next meet, so she needs to be as prepared as possible.  She’s been running laps at the school, working out with her medicine ball, and pushing Ailish around in the laundry basket (which is the funniest workout there is!), and trying to swim as much as she can in her off days.  Part is pure determination, the other part is escaping the tension at home.  I am happy to help with both of her efforts. 

 
 

My other tentative goal this weekend was to get a good picture of the girls.  I wanted it for the holiday card, but I also wanted it for Brad’s parents, who had asked for a recent picture of the three of them together.  I didn’t know how much longer we would have before Brenna went back in, before she goes to residential, so I wanted to try to get it during the days when Kieran didn’t have swim during the golden hour, when the light is just right.  My first try, on Friday, ended with another fit from Brenna.  I took some pics of Ailish and Kieran together, but it was pointless.  I wasn’t going to photoshop Brenna into it. 

 

Saturday, I thought I would try again, and we managed to pull it off.  It was 20 of the most anxious moments, because every time I told the girls to readjust, Brenna became annoyed that her sisters were touching her, or she’d make weird faces and I’d try to correct her, which would irritate her to no end.  I did manage to get a few that were technically useful.  Everyone has a smile.  Everyone is sitting together. 

 

I know to someone who doesn't know her well that these look fine.  But they remind me of the photos I took just before Ailish left, in October 2006.  Ailish just didn’t look healthy then, and I couldn’t see it until we’d gone round the bend and she’d come back to a point of stability.  She really didn’t look good for a couple of years there, and that’s where Brenna is now.  She just looks sick, and it makes me sad to even process the photos.

The whole weekend was so filled with anxiety – we all worried that at any second, Brenna would go off, and we’d be back in the hospital again, or worse, Brenna would hurt someone.  Kieran took to sleeping in our bed again, because she was worried that Brenna was going to hurt Ailish while she slept, and Kieran’s is the first bed in the room, so she’d have to go through Kieran to get to Ailish.  This is just not a way to live.  None of it.  It was exhausting for everyone.

It was a relief to get everyone out the door to school today, even if doing so requires the balance of a highwire act.  I worry about tonight, when Brad will be working late, and I will have to manage the three of them on my own.  I worry that this will be the night she loses it again.  I found out yesterday that she’s getting her decisions from the dogs again, that they are communicating with her, so that’s not a good sign.  I would love to get us through this period before she goes to residential without another hospitalization, but I’m not sure that’s possible.  Ailish is extremely anxious that Brenna will ruin her choir concert on Wednesday, but she doesn’t want Brad to stay home with Brenna, because she doesn’t want him to miss the concert.  We can’t leave Brenna alone by herself because that’s when the spirits take over.  That’s when she’s most at risk to harm herself.  Kieran doesn’t want Brenna at her swim meet, because we’ll have to get up early, and she doesn’t want Brenna to throw a fit when she needs to focus.  But we can’t leave Brenna with Ailish because that’s when Brenna attacks her.  This could not be a worse week for her to be at her most unstable.  I want to make clear, I’m not mad at her.  None of us are.  We’re mad at this disease.  We are mad at the spirits, although I realize that if we believe in them, we’re delusional also.  We know they aren’t real, but whatever is causing her to hear them, to feel them, we are furious at that.  We are all very angry that there is not a single thing we can do right now.

Over the past several weeks, many people have reached out to us.  We had invitations for Thanksgiving.  Family dinners I would have loved to have attended.  Trips to hang out with friends we haven’t seen in awhile during the long break.  Playdates.  Offers to get coffee, get lunch, get a break.  But leaving the house is very difficult right now.  Even being home is difficult – my dear friend Lisa brought us one of her amazing homemade apple pies on Thanksgiving, and I couldn’t even invite her in because Brenna was at that moment in the midst of her screaming fit.  I am very uncertain of what will set Brenna off, how she will react, what might happen, so it leaves us in a very difficult place.  We look like we are being anti-social, when the truth is, we’re just barely hanging on.  I don’t know what this week will bring – I am very worried about the potential minefield it presents, but I am just going to strap my armor on and try to hang on.  If we can come through the other side with little impact damage, it will be a success.  That’s a very big if.

I hate it when I'm right

My mom used to have a running joke with us kids.  If we had a small disagreement with her, say over the name of the star in an old movie, or whether we all had the flu on Christmas of 1978 or 1979, and we proved her wrong, she’d say, “You’re right!  You’re right!  I hate it when you’re right!”  It was just her funny little way of conceding defeat, and we’d laugh about it.  I spent most of my life enjoying being right, much to the detriment of my social development.  Teacher’s pet, always finished with my tests first (and, ugh, I regret to say I smiled happily as I skipped up to the front of the class with my completed work – honestly, it’s a wonder I didn’t get beat up more than I did), happy to share the news with anyone nearby that I had straight A’s.  I was a pretty annoying kid, I must say.  Precocious was the word adults used.  It took me many years to realize that precocious has a double meaning.  I unsettled people with my “rightness,” with the way I spoke like a 30-year-old at the age of 8.  I remember telling my brother he was uncouth for burping in front of guests, and everyone’s jaws dropped.  I was so pleased with myself.  I didn’t realize until later that I may have been more irritating than entertaining.  As the years have gone on, it is not nearly as important to me that everyone know that I am right.  Of course, in many areas I want to be right, but only for my own peace of mind.  I have realized there’s a great difference between being right and being righteous, and I try to stay on one side of that very squarely.

Still, there are times when I hate being right.  Because discovering I’m right is a confirmation of my worst fears.  I do tend to think darkly, and I tend to have to run a dark scenario all the way through to the end.  Ever since we’ve had kids, and I’ve worried about Brad’s safety because he is late getting home from work, or I know he’s changing a flat tire on a busy freeway, or that he’s 90 miles away at work on a rainy day, I have to run through the whole scenario in my head – how I would handle telling the girls about his death, how I would handle our finances, what kind of funeral he would want.  It’s not wishful thinking, believe me!  It’s just, somewhere inside, I need to know that I would be capable of handling the worst news possible.  What I hadn’t realized, though, was that losing Brad may not be the worst news possible.  Once you have children, and once you realize your child may be ill, there are far far worse scenarios that can run through your head.

It’s been almost three years since Brenna first left for residential.  We checked her in on December 12.  My dad died just an hour after I said goodbye to B.  Our family has been in the throes of some sort of trauma since October 2006, all in the hopes that it would lead to a better future for both girls.  We believed, when we first sent them away, that we were doing the right thing, as horrible and unnatural as it felt.  We believed that it was somewhat like chemotherapy.  Going through it would be incredibly difficult, but the end result, a healthier child, one with a future, was worth the pain.  Three years later, we are much wiser.  We have learned a great deal about good residentials.  We’ve learned more than we ever wanted to learn about bad residentials.  We’ve learned about the costs – both real and hidden – of sending our daughters away.  We’ve seen some benefits, particularly with Ailish, but in a strange way, visiting Brenna was one of the best experiences I will ever remember about our relationship.  Visiting Brenna after months without seeing each other is like a holiday.  For the most part, she is pleasant, funny, talkative, and happy.  As long as we had planned activities, and she got to eat where she wanted, when she wanted, it was the most fun I’ve ever had with her.  I loved exploring Texas with her.  Loved our time in Boulder, in Denver, in Castle Rock.  I told her once, after a particularly good day, how hard it was to only have good experiences on visits.  It made me want to take her home, but I knew she’d never behave the same way once she got here, to the real world, and had chores and homework and responsibilities.  She would nod and say she understood that.

When Brenna came home in June, though we didn’t have the homework, we did have the stress of her sisters, and the responsibilities of a chore chart, and she did so well with it.  We had been under some pressure from her staff to think about the possibility of bringing her home – something I had been against.  Of course I wanted her home, but I didn’t think she could maintain her stability.  After two weeks of family happiness, I wanted so badly to believe I was wrong.  I started to yearn for things I had made my heart shut off years before – family outings, family holidays, a full car, a full table at dinner.  Knowing that when I went to sleep at night, all three girls were safe in my house.  Knowing that our family was together.  Getting to go to high school football games, just to hang with my girl.  Getting back to the real world.  My heart began to believe in those things, and, coupled with the guilt I felt from resisting her coming home, we decided to give it a try.

She’s been home for five months now, and I would say the last two have been some of the darkest days of our entire family history.  It’s not just hospitalizations – I’m somewhat numb to many aspects of it, save for the last experience with intake.  No, it’s not that.  It’s that this new aspect is so scary.  The sounds she makes as she fights with her inner demons are terrifying.  Knowing that she’s so scared of this thing inside of her, that she’s oftentimes helpless to stop them, is, I’m guessing like watching your child fight cancer, knowing that the cancer is so much more aggressive than the medications.  Knowing that the medications have their own awful side effects, but there are few options for survival.  Wondering if such thing as quality of life is even a possibility.  But there’s a whole other aspect – because Brenna does want to hurt us when the spirits have their say, and I do have a duty to protect Kieran and Ailish and the dogs from her.  I should not allow my children to grow up in an abusive household.  They shouldn’t have to walk on eggshells, ready at a moment’s notice to scoop up the dogs and race to our room, locking the door behind them.  This shouldn’t be their reality.

The hospital experience this time has been a good one.  Despite the first night’s issues, Brenna really likes the staff and program better at this hospital, which is wonderful.  The doctor is amazing – he sees her every single day, including weekends, and he has called me each day to check in.  He doesn’t talk down to me, and no one wasted a single moment trying to figure out if I had somehow caused this situation.  The kindest thing the doctor said was the first day I met him.  As he walked away after saying goodbye to me, he turned to the nurse and said, “That poor girl has been sick her whole life.”  I started to cry when I heard it – in part because it is so sadly true, but also because he was so kind.  He got it.

Unfortunately, even with the kindest care, we are still struggling to find a solution.  Brenna is not responding well to any of the atypical antipsychotics.  She’s run the gamut now, and all cause tremors, weight gain, and now we’re dealing with “fogginess.”  She forgets what she was going to say mid-sentence.  She struggles to find the right words.  She doesn’t understand us sometimes when we talk to her.  It is so difficult to watch her struggle, knowing how bright she is underneath all of that.  Even worse, we know we’ve run out of options.  The mood stabilizers will do just that – they will help to control her mood swings.  They won’t completely control them; nothing ever has.  But they will help.  But without an antipsychotic, the voices have free reign.  Even knowing this, our insurance company is giving her the boot tomorrow.  They don’t want her there over the Thanksgiving weekend.  I would love to have her home for Thanksgiving – it would be the first Thanksgiving all five of us were together since 2005 – I just don’t think she’s going to make it through the weekend.  At least I know where we can go, but it is just horrible to have to go through the whole thing over and over again.

Yesterday was Brenna’s IEP meeting.  I knew what was coming, or at least I was pretty sure I knew.  First, the team went over her IQ scores, describing with astonishment just how bright she is.  She has a noticeable difference in processing speed, which I’ve known since she was 5.  They also all agreed that she was so pretty, so tiny, so young compared to their other students.  It’s actually worse to hear all this.  Because I know there is a “but” on the end of it.  I know what her gifts are.  I know she has tremendous gifts.  Yet I know that her mental illness is negating all of them right now.  After the “but” came the recommendation for residential.  It was a “no brainer,” which in some ways, I appreciated, because there wouldn’t be any argument.  But still, having it all laid out there in black and white, just how untenable things were, I felt ashamed.  I couldn’t look the team in the eyes.  Somehow, somewhere, I should have been able to save her.  I know I did everything I could this time around – I had fought to get her into a more challenging school, then, once I realized just how much she had missed during her years in residential, I brought her home to teach her myself, and fought every day to get her schoolwork done.  When she had her first breakdown from the spirits, I put her back into school, hoping in the short term, it would keep her mind occupied for part of the day, and in the long term, the district would be able to help.  Maybe I failed her somewhere before.  Maybe the first time around, I should have done something else.  Maybe years before that, I should have fought harder.  I think I tried the best I could under the circumstances I was given, but still, I second guess myself.   I guess I’ll never know.  I feel tremendous guilt for having to resort to this.  But there truly is no other option.

When I saw her last night, I told her the outcome of the meeting.  She cried, and I cried, and I apologized to her, but she said no, I shouldn’t apologize.  She was the one who was sorry.  I said for what?  For being sick?  There are no apologies necessary.  I made it clear we were not sending her away – we are sending her to get help.  I hope more than anything that she does get the help she needs this time around.

Brad asked me last night why it hurt so bad this time compared to last time.  Was he forgetting how bad it hurt, or was it truly worse?  I said no, even though the first time around was anguishing to the point that it took my breath away, this time around, it is worse.  We know too much about residential now.  We know enough to know that this may not do any good at all.  There are no other acceptable alternatives right now.  I have to think of her sisters, and I have to think of her own safety.

We’ll hopefully hear from the potential placements next week.  At this point, I’m just going through the motions, concentrating on what needs to be done.  Trying to ignore the Christmas music playing in every store, trying to ignore the possibility that she will spend Christmas without us.  When she’s safely placed, I will give myself those five minutes to cry.  But for now, I just have to keep moving.  I was right.  She wasn’t ready.  I hate it when I’m right.

Not okay

Sounds and smells have long been associated with memories.  I can remember as a child watching the MASH episode where Hawkeye reacted strongly to a smell, I think it was mold or mildew on a soldier’s uniform, and it turned out he was suppressing a long lost horrible memory.  He found and dealt with this trauma through the help of the Army psychiatrist.  It was a very powerful episode to me for some reason.

I have very strong associations with smells.  Cinnamon rolls and a waft of my mom’s favorite perfume bring me instantly back to her – being a child, hugging her hard, trying to take it all in.  Another food that reminds me of her is chicken curry – not the curry of Indian or Thai fare, although that is quite good, but the curry that Betty Crocker’s chefs conjured up back in 1960.  It is sweet and savory, with toppings so varied and disparate that it seems impossible you could put them all together in one dish and have something tasty – hard boiled eggs, sweet and dill pickles, bacon, tomatoes, pineapple, and coconut.  I think my mom used to have nuts and maybe olives out for this dish as well, but we don’t put those out now.  It is one of my favorite childhood dishes of all, and one the girls have come to love as well.  It’s a lot of work to make this dish – the best kind of chicken to use is a whole one, simmered until the meat falls off the bone.  The toppings are an all day affair – boiling and dicing the eggs, frying and chopping the bacon, chopping up the rest of them.  And yet, it is so worth it when it all comes together.

On Monday, I bought a whole chicken.  I wasn’t sure what I was going to do with it.  I knew I would simmer it down, but I didn’t know if I should make a chicken pot pie or curry.  Chicken pot pie didn’t excite the girls nearly as much, and I knew Brad would pick curry any day of the year, but there was one problem.  I was really worried about Brenna’s mood.  She had thrown at least one fit every single day since she’d been home from UCLA.  I knew she could become a threat to us at any moment.  And I can tell you almost every single time what we had been eating (or what we were supposed to eat) the nights the girls were hospitalized, or when they had the traumatic event that brought us to hospitalization.  Der Weinerschnitzel, where Ailish first told me she wanted to die.  Kieran’s birthday party lunch.  Fresh squeezed lemonade when Brenna ran away, and was hospitalized for the first time.  Crock pot roast beef, which I was sure had cooked out and burned our house down by the time we got home in the middle of the night, when Ailish was hospitalized again.  Chicken Cordon Bleu, which I was making the night that Ailish tried to kill Kieran.  Each of these, though I don’t avoid entirely, hold bitter memories.  And I was worried about taking something so wonderful as chicken curry and possibly ruining its specialness, taking away all of the good memories I have, if Brenna were to be hospitalized Monday night.  Still, I went forward.  I simmered the chicken while the girls were at school and stripped the meat off the carcass.  I put it in the fridge.  There was still time to switch to pot pie.  I made sure I had ingredients for both.  I picked up the girls from school and dropped Kieran off for swim.  Brenna, Ailish and I went to Sams Club, and we had a very pleasant outing.  No bickering between the two of them, no irritation from Brenna.  Once we picked Kieran up from swim and arrived home, the girls smelled chicken and begged me to tell them what I was planning to make.  It was decision time.  Brenna had a good day at school.  She seemed like she was okay.  So I teased them, saying I didn’t know, I was going to need a lot of help chopping things up.  They were giddy at the news that it was curry.  They excitedly helped chop the pickles and tomatoes, peeled the eggs, chopped up the bacon, and strained the pineapple.  I held my breath, hoping there wouldn’t be any excitement to torpedo the night.

It was such a good dinner – everything came together perfectly.  The girls mmm’ed in stereo as they ate up every bit in their bowls.  Brad arrived before we put it all away, and he enjoyed his own bowl.  Everyone thanked me for making it as they got ready for bed, and I breathed a sigh of relief that we made it through this night without anything major.

We had to make it through the next night, though.  The next night would definitely be leftover night, and curry leftovers are actually better than the curry the first time.  There were some moments on Tuesday – Brenna growled, she flashed those eyes, but shook them off.  She had times of irritation, times when she stomped her feet.  But she didn’t fall apart completely.  We made it through one more night, though it was shakier that time.

I was beginning to wonder if maybe the meds, though I didn’t like their side effects and didn’t think we had the right combination, maybe they were actually working.  I picked B up from school today, and she said she had had a great day.  There was a new girl in her class, a smart girl, and Brenna was excited to have someone to talk to in the classroom.  She actually said more than three sentences, which was an occasion.  We picked Kieran and Ailish up from school, dropped Kieran off at swim, and then we headed to the grocery store.  I was thinking chicken breasts with some vegetables, but Ailish said she wanted fish.  Brenna, who normally does not like fish, said as long as it was halibut, she would be okay.  Ailish wanted salmon, so I bought a pack of each.  I decided to make a salmon marinade and just bake the halibut, and then I would roast some vegetables to go along with it.  I had red potatoes, snap peas, carrots, mushrooms and cauliflower, so I thought I would make a foil packet, the foil packet we loved grilled during the summer, but I would roast it in the oven.  Though this dish was not steeped in tradition, it was a taste of those dinners we had enjoyed so much during the summer.  One bite, and I can recall sitting on the patio, the sky indigo blue, the temperature perfect, and all of us around the table.  Such a good memory.  I put the vegetables in just as the phone rang.  While I was on the phone, Ailish and Brenna got into it, and Brenna became frustrated over her computer not working properly.  I put the fish in, and hoped to distract them with new clothes.  Earlier today, I had gone to Macy’s for their one day sale.  They had puffer coats for girls and Juniors for 14.99, which was pretty amazing.  I was looking mostly for Brenna, because I knew she’d need a heavy jacket for our trip to D.C. at the end of the month.  But I knew that Kieran and Ailish needed new coats too, or at the very least, they’d really like new ones, and at that price, it was easy to do that for them.  I had also gone to Target after Macy’s and found some warmer clothes on sale for Brenna.  I was excited to show them the clothes, and thought maybe it would bring a lighter feeling to the house.  But instead of happiness, Brenna almost immediately became angry, as soon as I brought the coats out of the bags.  I had gotten five coats, thinking I would return two, but this price was only available until 1:00 p.m. today, and I wanted to give them enough variety that they would all be happy with what they got.  Brenna wanted none of them.  Ailish and Kieran chose a coat for themselves, but B just became angrier and angrier.  She threw the coats on the ground and started screaming at me.  She hated me, I wasn’t her mom, she didn’t know who I was, she didn’t want me to be nice to her, she didn’t want me to love her, she didn’t want to be “here.”  When I asked where “here” was, she didn’t know.  She just screamed “ANYWHERE!”  I walked away, and she became even more violent.  She was laying across the couch, kicking as hard as she could on the arm of the couch.  Finally, I had to get her legs held down so she didn’t kick anymore.  That was when she began screaming, saying the spirits were in her, they were getting her, they were fighting in her head right at that moment.  The spirits made her say all those horrible things, she said.  The spirits wanted her to hurt someone, and she would hurt anyone near her.  Duncan came running to comfort her, and she begged us to get the dogs out.  Begged us to leave her alone because she would hurt anyone who came near her.  We left her in the front room where I tried to figure out what to do.  Somewhere in all of that, I managed to get the fish and the vegetables out of the oven.  They sat on top of the stove, looking forlorn at that point.  Kieran had heated up some leftover homemade mac and cheese from Sunday night.  She didn’t want fish or curry.  The macaroni didn’t hold any memories.  Ailish waited at the table, not quite sure what to do.  I could tell she was hungry, but she didn’t want to be in the way.  I asked if she was ready to eat.  She quietly, almost apologetically, said yes.  I fixed her plate while I listened for Brenna.  By this point, she was moaning on the couch.

I put in a call to UCLA.  At least they called me back, but the response, “No beds,” was not what I needed to hear.  I called the County Psychiatric Emergency Team.  They told me they had no teams available, but they could call the Sheriff for me.  I said no, I didn’t want to get the Sheriff involved.  He was very insistent that they would only send out a deputy trained in mental health issues, but I had been down this road too many times.  I told him no, I thought it would only make things worse.  He gave me ten minutes, said he was going to call back then, and if I hadn’t found a bed, he was going to call 911.  I called hospital after hospital.  The one cruel moment, when I discovered one hospital had a bed, but no longer took our insurance.  I was left to stare at our insurance company’s list of psychiatric hospitals, unable to tell whether they had adolescent units or not.  I decided to call our therapist and see if she could help me decipher which ones were adolescent.  She asked if I had tried a hospital only 10 miles from us.  I didn’t know they had an adolescent ward.  Last I heard, their ward had been closed due to budgetary concerns.  She said she thought it had reopened.  She told me to give it a shot and call her back.  I called and asked if they had an adolescent psychiatric unit, and, in lieu of an answer, was immediately transferred.   I asked the nurse who answered if they had any beds available.  She asked who I was.  I said a parent.  She answered that she wasn’t at liberty to discuss their bed availability.  It was so frustrating.  I called our therapist back.  She said she would give it a try and see if they would tell her if there were an available bed.  Ten minutes later, she called back – they were holding a bed, we just had to go through the ER.  By this point, Brad had just arrived at home.  I apologized to him for overcooking the fish, but he said it was fine.  I had had a couple of bites of vegetables, but I was more concerned about B.  After two hours, she came up and said she was hungry, so I made her a plate, and she sat down and quietly ate it.  I knew the worst was over, but I still couldn’t imagine keeping her at home after everything she said about the voices.  I didn’t know when they were going to take over again.

We packed up her things, and she and I drove to the hospital.  Though their facilities are nowhere near as glamorous as UCLA, they have been quick and kind.  We are only two hours in, and she has already been cleared by the physician, cleared for the admission, and we are just waiting for someone to take us to her bed.  I have a feeling it won’t be a 90 minute wait, like it was at UCLA.  Yes, the psych nurse who approved her admission was odd.  She was hard of hearing, which is really at odds with a depressed child who needs to provide details about the spirits that are trying to get her.  She wouldn’t let me speak for Brenna, yet she couldn’t really hear what Brenna was saying.  When Brenna said she heard voices, she asked her to describe what they said.  She did her best to explain, and then said the spirits were all around her.   So the nurse argued with her.  “’Voices’ and ‘all around you’ are two different things.  Which is it?”  Hey, how about both?  She also argued with Brenna about something else, but now I’m blanking.  I knew I should have written it down immediately, but I figured the nurse would get suspicious if I started typing mid-interview.

It’s quiet here in the ER right now, which I know I’m not supposed to ever say.  But it is.  Brenna is asleep on the gurney.  The elderly woman who shares our room and has a broken hip has fallen to sleep, a brief respite from the pain.  Even with the bright lights, all of the patients in this area have dozed off.  I find a sense of peace here too.  I know (or at least I hope I know) that she will be safe here.  I don’t know if she will get the help she needs, but at this point, we know that UCLA has given it their best shot, and yet, here we are.  More importantly, I know that it is peaceful at home right now.  That even though they will struggle to stay awake until I get home, her sisters sleep tonight for the first time in almost a week, knowing that tomorrow will be peaceful.  It is sad.  It is difficult to comprehend.  But it is true.

As I write this, it is now tomorrow.  2:30 a.m.  I just got home from admitting Brenna.  Honestly, I was doing okay with it until we got upstairs, got to the ward.  She was doing okay with it too.  But then, we were faced with a whole new set of rules, and it didn’t sit well with either of us.  No Zune.  Brenna was pretty bummed about that.  No colored pencils.  That’s her main form of expression.  No stuffed animal.  Her apple dog was packed in her suitcase.  Apple has been her dog since she was 2.  It hurt a lot that they didn’t let her keep him.  The last straw came when they said no blankets.  She had been wrapped up in her quilt the whole night.  That was it for her.  She began sobbing.  I did too.  They relented and said she could keep it tonight, let the day staff deal with it.  I hope they let her keep it.  I hope they understand it’s the only source of comfort she has.  I was stunned when they said they needed to do a strip search.  They asked me to come in the room, but I didn’t want to be a part of taking away her dignity.  I stood in the room, but I stared off in the distance, not wanting to be a part of this, wishing I could take away all of this madness.  For the first time in a very very long time, I lied to her tonight.  I don’t lie to my girls.  Ever.  But I did tonight.  As I hugged her goodbye, and she clung to me, I whispered over and over, “It’s okay, it’s okay.  It will be okay.”  That was a lie, and I’m pretty sure we both knew it.  It’s not okay.  Definitely not okay.

The waiting is the hardest part

11/12/09

11 days.  It’s been 11 days since I’ve really written.  It is 11 days until Brenna’s psychiatry appointment.  It, as I just learned seconds ago, is 11 days until Brenna’s IEP meeting.  One number that is different – 20.  That’s how many days Brenna has been at UCLA.  If only I felt like any real progress had been made, I would be happy to welcome her home, but she has made it well known to us and to the staff there that she won’t be able to control herself at home and she will hurt us.  That’s the truly scary part.  If only the new medication wasn’t causing really troubling side effects, such as whole body tremors, tics, and rapid weight gain, as well as putting her in a mixed state.  That’s the truly sad part.

I haven’t been quiet because I’ve had nothing to say – quite the opposite.  There has been so much to say that when I sit down to type it all out, I’m rendered mute.  Just living the last 11 days has been exhausting – reliving it is painful.  I think this has been the darkest period for our family as a whole in a very long time – probably the darkest since Ailish’s first hospitalization six years ago.  But even darker now, as the girls are older, they understand more, and we are older, and have a much deeper understanding of how few options there are, how little possibility there is for a “full” recovery.  We’ve all been hanging on by our fingernails.  Kieran has immersed herself even further in swim (good for her!); Ailish, after battling the flu for a week, has become newly obsessed in her pursuits to be a beautiful actress (yes, she’s always been interested in these areas, but it has reached a fever pitch); Brad and I, we just do our best to make it through the days and then retreat to our corners – him to World of Warcraft, I head for Farmville on Facebook.  Sounds so stupid, so unproductive.  There are plenty of things I could be doing – housework, reading, writing, photography processing – so many things, and yet, by the end of the day, my brain is numb.  I can’t think any longer.  So I retreat to a world I can control.  A stupid silly world that is precise – wait 24 hours, harvest some crops, repeat.  I nag at myself the entire time – go do some laundry, clean off your desk, write today’s events down – yet Farmville soothes me in a way that nothing else does at the moment.  Even the dogs are subdued.  They are in full guarding mode – they sit near us wherever we are, their eyes searching for some command, or some reassurance.  The general feeling that has settled upon the house is one of unrest, of trauma.  We all sleep fitfully.  Brad and I haven’t gotten a whole night’s sleep in weeks.  Kieran has been sleeping with us - even though any immediate threat is gone, she does so for comfort.  But she hasn’t been falling asleep until well after 11:00 each night.  Ailish’s body was so out of whack from the flu that she is still struggling to find a rhythm.  I guess it’s fitting because Brenna has not slept more than five hours in several days.  When she first got to the hospital, it was difficult for her to sleep more than 2-3 hours.  Then she hit a lower mood, and was sleeping 12-13 hours.  Now she’s mixed, and it hasn’t been good. 

Kieran has struggled emotionally this time.  Every day she tells me she started crying for “no good reason” at random times.  We saw her therapist last Friday, and she was able to give Kieran words for her emotions.  It’s much harder now that she’s older, because she gets it on a level she never did before.  But as Dr. Kathi was saying, when someone dies, we grieve, and grief, though it’s an uneven process, it is easier to process if there is closure.  However, if we continually grieve for a person over and over again – if our hearts have hope that this person is back, only to be crushed as they leave us again – it is difficult to ever fully recover from that kind of grief.  It resonated completely with me, especially at this time of year.  My mom’s birthday is November 14.  As complicated as our relationship was, I still miss her, and when we get closer to her birthday, to holidays, to the anniversary of our death, the pain flares up, but it is a pain that comes after one loss.  But Brenna’s loss is so much more painful.  We grieve her absence, grieve for the loss of what we thought she was or what she could have been, and then, just when we have come to some sort of peace with it, she is back.  Glimmers of hope come alive, we begin to cautiously make plans.  Cautiously open up the wounds, still painful to the touch.  Things go along well for awhile, and we let ourselves believe that there may be a chance after all.  We begin to trust.  Once we’ve opened ourselves up to love again, something happens – a shift in mood, a meltdown, an outburst, a violent attack – and we are left to staunch the bleeding, to pick up the pieces again.  It is a very difficult way to live.  Thankfully, Kieran does have swim to at least help in some ways.  She had a great meet last weekend, knocking some astounding amounts of time off of several races, and bringing her oh so close to qualifying times for the Winter Championship in December.  Swim is good, it is her lifeblood, but it’s not quite enough.

Ailish, poor Ailish.  On the 2^nd, after dropping Kieran off at swim, I took Ailish to get some new shoes, and I realized she had a short cough.  I thought she was having asthma issues – this is the time of year when she’s most likely to get them.  After Kieran was done with swim, we dropped her off at home and I took Ailish to Urgent Care.  I just thought we were there for a breathing treatment, but it turns out, she had a fever, and the doctor felt she had the flu.  Ugh.  The worst word I could have possibly heard at that moment.  My mind began racing with thoughts of whether we had already caught it from her but hadn’t seen any symptoms yet, what kind of flu was it, was Kieran going to be sick that night?  The doctor offered a Tamiflu prescription, and given the fact that we didn’t know what we were dealing with, and Ailish is so phobic of vomit, we opted to take it, in hopes that it would help stave off the worst of the flu and give her a bit of a break.  We got out of Urgent Care with minutes to spare before our Target pharmacy closed, but I really wanted to get the prescription from there, so we raced over.  We got there with just five minutes left, and I asked if she could fill it.  One problem – the insurance company would not authorize the pill form for her, so she had to call the insurance company, then call Urgent Care to get a new prescription for a liquid form, then actually make the compound.  When all was said and done, our little prescription made her stay 45 minutes past closing time, and I felt so bad, but I was also extremely grateful.   I just wanted to get the medication in her, and hope that we had helped her.  Unfortunately, that night after taking the medication, she threw up.  She was quite traumatized, but I have to say, she handled it completely on her own.  She gathered up her sheets and blanket (which went straight to the trash) and cleaned everything up by herself.  I didn’t even realize she had thrown up until after the fact.  I was really proud of her for reacting so calmly.  We decided to give the Tamiflu a break and see if it was the drug or the illness that caused the nausea.  As days dragged on, we realized that it was definitely the medicine that caused the issue, but it took a full six days for her fever to break and for her to feel human again.  I just felt so bad for her, because I knew she was stressing about the school that she was missing, she was worried about spreading her germs to the rest of the family, but she was also feeling a little ostracized because I wouldn’t let her out of her room without covering her hands in disinfectant wipes, and even then, she could only leave for short visits.  It was not a good week for her.  Thankfully, her best friend was down with it as well, so they could at least chat and empathize with each other.

I was really worried that Kieran was going to get the flu, especially when she had a big meet coming up that weekend.  Thankfully, somehow by using up an entire year’s worth of antibacterial products in one week, she made it through untouched by the virus.  Early Saturday morning, we said goodbye to a still (mildly by that point, but still) feverish Ailish and headed for Kieran’s meet.  Miss K had a good day, even with her nemesis, Freestyle, giving her fits.  It’s a paradox to me how much she loves the most complicated strokes, but the most straightforward one makes her the most nervous.  Once she’d finished her races, we headed back towards home, stopping for wings along the way.  We talked to Brenna on the phone for a bit, and things seemed to be the same there.  She wasn’t talking about the channels or spirits as much, but the new medications were causing some difficult side effects.  She said she still felt “mixed up,” and still was scared to come home because she was afraid she would hurt us.  We decided not to visit that night, but we told her we would try to come and see her the next day.

That afternoon, I had a photo shoot scheduled, one of the only shoots I have done this year.  This is a friend of the family, so not any real pressure, but of course, it would help to remember to bring the camera battery when you go on a shoot, especially when you are dealing with the quickly setting autumn sun.  But no, since I had taken so many photos at the meet, I had put the battery on the charger, and though I told myself three times not to forget it, that was exactly what I did, and I didn’t remember until I was nearly to the site of the shoot.  Embarrassed, I raced back home and grabbed my battery (and my phone, also on its charger) and raced back to the shoot.  I know we lost some light, undeniably, but hopefully between my flash and my reflector, I captured some good photos for them.

The next morning, we awoke early again for day two of Kieran’s meet.   Ailish was finally out of the woods, and fever-free, but she was not too excited about the idea of getting up at 5:30, so we let her have one more day of rest while we cheered Kieran on.  She had another great day, and inched ever closer to the coveted December Championship invitational.  She is 1.82 seconds off an invitation on her backstroke, so she is highly motivated to get it over one of her next two meets.  She also conquered the 200 Individual Medley, which literally had her hyperventilating before the race.  She was so scared, she was shaking – 2 laps of each stroke, and even though she is really good at medleys, for some reason, she psyches herself out.  One of her teammates, an 11-year-old, told her she’d never swum that race, so that had Kieran in a tizzy.  “And *eleven* year old has never done this, why does he want me to do it?!”  I was really nervous – I thought she’d just stop in the middle of the race, but no, once she got in, she did an awesome job.  She’s several seconds off a December invitation for that race, but with 200 yards to do it in, I think she might actually get there at the next meet!

After we packed up, we headed with Grammapoppa to celebrate Gramma’s birthday with some pizza at Toppers.  We then went back to their house for a bit to see their renovations, Gramma’s birthday present (a new washer and dryer, which I think is a really good present, actually!  Shows what an adult I am now!), and try to recruit Grandpa into Farmville.  We knew we were going to see Brenna at the hospital that night, so we said our goodbyes and headed back home. 

That night, Brad and I both went to the hospital.  We were both exhausted – I was quite sunburned from the meet, and neither of us had gotten much sleep over the weekend.  But we knew Brenna was anxious to see us, and we wanted to show our support.  Still, it was a very frustrating visit again.  Her notebook, the one that was previously lost and made it unable for her to do her Algebra homework, had resurfaced.  While she was in the bathroom, I noticed it on the shelf, and decided to flip through it to see if she had homework I could turn in.  As she came out of the bathroom and saw me, she nearly yanked the notebook out of my hand.  I knew at that point that there was something to hide.  I started asking questions, and she instantly got the lying look on her face.  Her eyes darkened.  Her mouth set.  I started to look through it, and I could see she was getting angrier and angrier, but so was I.  As I said before, lying is the worst thing to do to me, and that has been clear from the beginning.  We started trying to delve deeper, and we got as far as an issue with a boy, something to do with her friend and a boy, it was all tangled up and she wasn’t about to give us the full details.  Again, we left on bad terms that night, and I resolved to call the doctor and the social worker the next day to try to get to the bottom of it. 

Ailish finally went back to school the next day, which was a good, but stressful, thing.  During her week at home, she had poured all of her anxious energy into her appearance, and by Monday, though she was scared to death of the homework that was waiting for her, she looked really nice!  She had laid out many outfits during the weekend, and she had learned that brushing her hair was soothing, so I thought she was definitely ready to go.  Last minute anxiety, though, almost made us late for her first day back.  I know she is struggling with that balance – I can see it in her.  She wants so badly to stay in that world, in the “normal” world, but the stress of just staying on the wheel is sometimes overwhelming.  I am hoping she can maintain it.  It’s not enough just to survive that world, she wants straight A’s, she wants to be popular, she aspires to be part of the Student Body council next year, to be in Show Choir or Cheer in high school, and I want that for her too, but I also hope she scales back her expectations enough that if she misses the mark by just a bit, she doesn’t fall off completely.  That’s a really difficult balance for her to find.

On Monday, my conversations with the doctor and the social worker were turning to discharge talk.  I asked Brenna if she thought she was ready.  No.  She was scared.  The spirits were still outside, waiting for her, and she was scared they were going to make her kill someone, or that she would hurt us because she couldn’t control herself when she was angry.  The doctor said Brenna seemed to be doing well, that she was responding well to the new medications, yet another thing I disagreed with.  I didn’t think she was stable.  She was at one point manicky, then depressed, then irritable, and she described herself as all mixed up.  There were also troubling side effects, like tremors – not just in her hands, but her whole body seemed to be shivering.  She had some muscle tics as well, and, though she can certainly stand to gain a few pounds, she has had a very noticeable amount of weight gain.  I wanted them to change her meds, but they held fast that they thought they were on the right track.  I knew it was coming, and I just hoped it wouldn’t be Wednesday because I didn’t want to have her home on the holiday.  The first full day at home surrounded by her sisters seemed like a recipe for disaster.  But no, they set it for today. 

I have spent the entire day on the phone – with the doctor, whom I asked point blank if this were her daughter, would she feel safe bringing her home?  She deflected it by saying Brenna deserved a chance.  I said she didn’t answer my question.  If this were her daughter, would she feel safe bringing her home?  “Well, your insurance ran out on the 6^th.  If you would like to talk to our financial department, we can keep her if you are willing to work out a payment arrangement.”  The daily hospital fee is astronomical.  We’ve exhausted every bit of savings we have in trying to find the right treatment for the girls, in visiting them at their residential placements, in working to get them the education and the care that they need.  No, we couldn’t do that.  Unfortunately, they had appealed twice, they’d been denied twice, so there’s really nothing else they could do.  This conversation was the first that I’d heard Blue Cross denied them.  Had I known, I would have been working the phones myself.    Just for my own peace of mind, I decided to call Blue Cross.  An hour and four phone calls later, I was not any closer to having Brenna stay in the hospital, though I had learned a few things.  First, that after two appeals, my only recourse was to file a 30-day grievance.  I tried to explain the situation, that she said she was going to hurt us if she came home, and Blue Cross told me they had never heard that from the doctors, that it had never been in her notes.  I left a message for the supervisor at Blue Cross and moved on, at the agent’s suggestion, to the California State Department of Managed Health.  I explained the situation there, and they told me they couldn’t even take my complaint until the 30 day grievance had been filed and answered, and that their response would take at least five days, and that would only be if I could convince them to make it a priority case.  I asked, so I’d have to wait five weeks and hope my daughter didn’t hurt us by them?  Yes, ma’am.  Brenna called at 3:45 to tell me she’d just had a meltdown after not being able to get her luggage early.  She said no one tried to stop her from kicking the wall or throwing or tearing up things, and this time, they didn’t offer her any medications to calm down.  I knew why – if they gave her medications, they would have to record it in her file, and I knew this was not what they wanted.  Just as they didn’t record how each night, she stayed up until 3 or 4, and woke up just a few hours later, or that some mornings, she didn’t get up until the morning was gone.  If they wrote it down, there would have been a clear record of just how unstable she was.  At 4:30, I got a call from the Blue Cross manager.  He said if a doctor was willing to file an appeal at that moment using those words, that she would hurt us when she came home, he would consider it.  I knew no one at the hospital was going to help.  I asked him if I picked her up and then brought her right back to the hospital, what would happen?  He said that was a separate incident, and they would consider that back at square one.  It just makes no sense.  I sighed and said thank you before I hung up.

When I got home, I discovered that Brad was on the phone with one of the heads of the psychiatric department.  He deflected our concerns about the medications, describing in great detail why these were not side effects to be concerned about.  He said he wished there were more he could do, but with the insurance no longer willing to pay, and we weren’t able to pay, they had no choice.  He wished us the best of luck.  Hmm.

11/14/09

I thought I had already lived a week of epic proportions, but the past two days have felt super sized, to be sure.  Thursday night, after picking Kieran up from swim and dropping her off at home, I drove down to UCLA to get Brenna.   It should have been a happy moment, but I was dreading it.  If I felt like she was stabilized, I would be happy.  If I felt like she was on the right medication combination, I would be happy.  But none of that was true.  I knew we were setting her up for failure, and setting us up for another painful chapter in our family history.

As we waited for the nurse to check with the doctor about discharge medications, Brenna said, “Mama, I promise I am going to try really hard this time.  I am going to be good.  I promise!”  I told her I appreciated that.  I knew in my heart it wasn’t about promises.

I glanced at the discharge summary, and was dismayed by the list of possible diagnoses.  Rule-Out Intermittent Explosive Disorder, Rule-Out Reactive Attachment Disorder, Rule-Out Depression with Psychotic Features, Psychosis Not Otherwise Specified, Rule-Out Expressive Language Disorder.  They had had 20 days to test her, and if you combine the previous stay, 29 days.  One month to run every test that one of the “best” hospitals in the West could run, and all we had were a bunch of vague ideas.  They’d even taken away the one that we are pretty certain of – Bipolar Disorder.  Wow.

We drove home in silence.  My mind was racing with all the possibilities, wondering how long we’d make it, wondering if I was wrong, if I should just give this the benefit of the doubt, if I should just give it time.  We were getting ready to exit the freeway, and I looked back at Brenna.  I thought she fell asleep, but no, she just sat staring.  I wondered what was going on in her head, but I knew better than to ask.  I was positive I would get an “I don’t know,” or “nothing” in response.

The dogs gave her a very hearty, very excited welcome home.  Brad gave her a big hug.  Her sisters were more reserved, but still said hi.  They had both already told me separately that they were worried about her coming home.  They had not had good visits with her this time around.   They had been fighting themselves all week, I think because of the general anxiety that Brenna’s impending homecoming was causing, but they were more scared of her than each other.  Brenna seemed oblivious to their reactions, though.

After taking her bags upstairs, she headed for the kitchen, where she prepared and ate snack after snack.  We kept suggesting vegetables or fruit, or perhaps some sugar-free jello.  My fear is that if she gains a truly significant amount of weight, she is going to go back to her starvation diet she went through over a six-month period last year and early this year.  I just don’t want to go back to that. 

In the midst of Brenna’s homecoming, Ailish brought me, with a puzzled look, a clump of blond hair she’d found in the bathroom.  There’s only one blond in this house, and it was obvious this hair wasn’t just cut – it was pulled.  I asked Kieran what it was.  “I pull my hair when I am stressed.  It feels good,” she said so matter of factly, as those words sank like a knife into my heart.  No.  No no no.  I wouldn’t have it.  I wouldn’t let her get sucked into this too.  I wouldn’t allow her to go down that dark road.  I begged her to tell me when she was that stressed, to tell someone.  Write it down, scream it out, do anything else but hurt herself.  This was my worst nightmare.

Brenna was quite happy, though, getting settled in.  It was 10:00, and we were trying to get everyone into bed.  Brenna picked up my old laptop to take upstairs.  I said no, it was too late, we weren’t going to have that, plus we’d been trying to keep the computers all downstairs anyway.  That was it – she lost it.  We were standing in the dining room, which has morphed into my de facto office.  The dining room table was covered in paperwork, which I had at least sorted into piles.  Girl Scouts, school stuff, bills, paperwork related to each girl, and incoming mail.  She began throwing everything she could get her hands on.  I took away my camera, camera bag, external drive, scissors, stapler, anything that had value or could be used as a weapon.  She threw pens, paper, ripped up a box, destroyed what she could get her hands on.  She began beating the file cabinet, then beating the table.  Finally, when it seemed like she would actually break something, we stepped in and held her while she screamed about the spirits.  I gave her Seroquel, hoping it would calm her down.  We held her and waited.  She screamed about how she lied to us, how she didn’t want to be here, how the spirits were coming for her.  We waited.  The Seroquel was not helping.  As instructed, I tried to give her some more.  She told me her pills were poisoned, that she wasn’t going to take it.  I tried every tactic I could think of to get her to take it.  Finally, I walked away.  She slumped on the floor, holding on to the base of the office chair with everything she had.  She screamed and moaned for the next hour.  I would have taken her back, I would have, but it was 11:00 p.m., and I just didn’t have it in me to make that drive and wait for 6-8 hours for her admission.  Finally, the moaning stopped.  She stood up, asked for the meds, and went to bed.  I was worried about the next day, because she had to be up early for school.  I feared the worst, but actually, she hopped out of bed without incident.  I think I should give up on expectations.

I was exhausted.  We had all been awake late the night before because of Brenna’s meltdown, and once I had gotten all of the girls into bed, I tossed and turned until well after midnight.  I woke at 3:00 a.m. because Duncan, with his nervous stomach, had had a major accident right underneath the bed.  Once I had cleaned that up, I couldn’t fall back to sleep, so I had only gotten about three hours.  I felt like the walking dead, but I just kept putting one foot in front of the other – get my labs done, get the new prescriptions filled, keep moving.

Kieran had her Friday minimum day, so I picked her up and she had lunch at home before her private swim lesson.  Then we had to get Brenna from school.  I hold my breath a little bit before she arrives, because we don’t know what kind of day she’s had, but when she reached the car, she had a smile on her face.  So far so good.  We picked Ailish up, and then went home for a few minutes before I had to drop Kieran off at swim.  I made Brenna come with me because I knew things were still too up in the air. 

Last night was like walking a tightwire.  Brenna was clearly agitated, and all of it was directed at Ailish.  We came *so close* to a violent meltdown, but we kept pulling Ailish out of the room.  Again, I would have taken her back last night, but I was too exhausted.  I was prepared to do it if she completely melted down, but as long as I could keep it from reaching that point, I was willing to do it.  This requires that I be in the room with her at all times, which is where I am right now.  Our sunny family room, just off the kitchen, currently has both dogs asleep, Duncan at Ailish’s feet, Reilly on the couch, just a few feet away from me.  There is the rhythmic drumming of the dishwasher.  The clicks of the keyboard from Ailish’s, Brenna’s, and my laptops.  Brenna has had coffee, two bowls of cereal and a slice of pizza.  Yet, every once in awhile, Ailish will remark about Farmville, about something she’s seen on a website, and Brenna will look up and glare, or make an angry comment back at her.  There is a sharp undercurrent of tension.  We all sit quietly, waiting for the next explosion.

I imagine it will come soon.  The dining room is still a disaster, and although it may not be the wisest thing I have ever said as a parent, when she was throwing those things around, I told her she would clean it up.  She screamed back at me, “NEVER!” but I said it, and now it needs to happen.  I am waiting until after I drop Kieran off at her Aqua Mentors group.  She has been looking forward to it for weeks, and I don’t want a meltdown to spoil it.  

We are stuck here, waiting for IEP meetings and doctor’s appointments, waiting for disaster, at the mercy of everyone else.  I am not a person who likes to put my destiny in others’ hands.  It is a particularly painful place to be, for me, and for everyone else in the family.

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.