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Friday, October 17, 2014

Ups and downs

A few years ago, T and I watched a ridiculously cheesy TV show called Forever Eden.  The premise of the show was pairing off single people and seeing how long they could stay at a luxurious resort.  To announce a twist or competition, the hostess would place a huge fake apple on the contestants' bed and remind the audience that the apple could bring good...or EEEEEEEVIL.  I feel like we have had an enormous apple placed on our bed this week, and with it, we have had both the good and the bad.

Monday's surgery went well overall.  It started later than expected, so it was a long day of waiting for everyone.  When the surgeon came out to talk to me, she delivered two kinds of news: the tumor had all been removed but she thought the cancer had spread to the bladder.  Thankfully, we found out the next day that the cancer had not spread any further than they originally thought.  The bladder was perforated, but the explanation was that the radiation had caused the tumor to stick to the bladder and the perforation happened when the tumor was removed.  Score one for good news!!

I stayed in the city on Monday night so I could get to the hospital bright and early Tuesday morning.  It was great to see T, but it was also really weird.  He had a morphine pump, and by God, he was not afraid to use it.  The meds made him flat and expressionless, and if you know T, you know that's not his normal state.  He was in quite a bit of pain, but it was controlled by the meds.  I stayed that afternoon, but I went home later that day to be with the kids.  No matter where I was, my heart was always split in half between Northwestern and home.  

The next day was fantastic.  As soon as I got the kids off to school, I headed into the hospital.  T was up and alert.  His morphine pump was gone, but he had more energy to walk around and be out of bed.  He joked around and talked, and I was thrilled to have my T back.  He shaved, and I helped him wash his hair.  He was even allowed some soft food, although after about four bites, his appetite was gone. When I left that afternoon, I was confident that his recovery was going well and he was on track to come home Friday.

Thursday wasn't so great.  My brother and I drove in to visit, but we ended up only staying fifteen minutes.  T had been nauseous and vomiting all night, so he hadn't gotten any sleep.  He was sitting up in a chair when we got there, but he was obviously fading fast.  He was too exhausted to have anyone around, even me.  He texted me later in the day to let me know that he had still been vomiting, and the docs had decided he needed an NG tube.   The tube was supposed to remove whatever was in T's stomach; apparently his bowels weren't "awake" after surgery and that was causing his nausea.  His nurse assured me that this was all completely normal after anesthesia, but what is normal to her sure seemed completely wrong to me.  The only good news of that day was that T's catheter was finally removed. 

My dad and I arrived at the hospital this morning, Friday, to find a wan and weary T.  The vomiting had continued during the night and into the morning.  At one point, the NG tube started to choke T, and the nurse had to remove it.   Unfortunately, it had to go back in.  Two different people tried to re-insert the tube with no luck.  When the third person came in to try again, T told me to vamoose because he didn't want me in the room while it was going down.  He was so run-down that having people in the room wasn't going to do him any good, so my visit was cut short once again.  There was one bright moment, though, when I saw my guy's true self.  I told him I wished I could stay longer, he told me that I tend to get annoying after ten minutes, fifteen minutes tops.  That's the Trevor I know and love. 

I know that things will get better, and I know that all of this is only temporary.  Even knowing those truths doesn't stop me from feeling completely helpless.  I want to DO something to help him, to fix him, to bring him home.  I also know that the most important thing is that the cancer is out; I'm just selfish enough to want the cancer gone AND for T to be comfortable.  I want him to feel good, and I want him to come home.  The week of good and eeeeeevil continues, and I just hope it comes to an end with more good than anything else. 

Thursday, October 2, 2014

Moments

It is one of those perfect fall days: sunny but crisp.  Someone in the neighborhood is burning leaves, and the slightly acrid smell in the air is comforting.  The kids are outside after dinner, and their screams of laughter echo throughout the gloaming.  Those are some of the happiest sounds I have ever heard, and I'm trying to imprint them into my memory.

My mom and I visited a friend a couple of days ago.  We met the year I was student teaching at a small Catholic high school in Indianapolis.  I ended up teaching at that same school for four years, and our friendship grew and cemented.  We're sort of an odd couple: there is a big age difference, we don't have a great deal in common at the core, and we have lead extremely different lives.  And yet, of all the amazing people I met those four years, he is the one I see the most often, the one who has been most consistent in my ever-changing world.

Jim isn't the friend who will bring a pint of ice cream and a DVD when I'm feeling sad.  Quite the contrary.  When I had to move out of my house in Indianapolis rather abruptly because my first husband decided that being married to me wasn't his thing, Jim brought boxes and helped me pack.  I remember crying while I packed my broken life, and he kept telling me to quit crying because it wasn't helping me get anything done.  "Oh, stop it.  You're fine and this is all going to be fine.  Now, where do you want all these books?  You know you have way too many books, don't you?"  And he was right.  Well, one can never have too many books, of course, but I was fine after that mind-numbing heartbreak.  I AM fine.

We travelled together, had meals together, had drinks together, laughed together.  Every time I moved, which was oddly quite often, he came to help put my new places into working order.  He became friends with my whole family, my new (much better) husband, and eventually my children.  He even visited my parents in Valpo when I was still living in Lexington.  We didn't see each other as often as we used to, but we talked on the phone and were always in each other's thoughts.

The phone rang a few months ago as I was making dinner.  The kids were asking for the umpteenth time what I was making, T was in the living room chatting with his parents, and I was frazzled.  Normally I ignore the phone when I'm busy, but I glanced at the caller ID.  I saw the name and number of a friend of Jim's and I went cold.  She told me that there had been an accident, and Jim was in the hospital with what the doctors thought was a stroke.  The next few weeks were agonizing as I made call after call to try to get information.  After a month in the hospital and one measly week in a rehab center, he ended up at his niece's house a little south of Indianapolis.

My mom and I made the trek to see him, and I carried the warning in my head that he was suffering from expressive aphasia.  Logically I knew that he would be different, but the tiny Pollyanna in my head assured me that Those People were wrong.  Physically, he didn't seem much different although he was unshaven, a sight that I had never seen in twenty years.  He knew who we were straightaway and gave us both hugs, but I could immediately see the effects of the stroke.  He claimed he didn't know we were coming to visit, that people had been lying to him.  He couldn't easily find his words, he went off on tangents that we couldn't understand, and he just looked...old.  There were some things that seemed decently fresh in his mind, things about 1995 when a bunch of us starting teaching and hanging out together every free moment outside of school.  He somewhat remembered travelling with me and how much fun we have always had together.  He didn't remember where he was staying or why my mom was there or even his own beloved cat.  Every once in a while, there were glimpses of my old, very funny, very smart friend, but they were few and far between. I tried to stay sunny and happy and positive, but inside, my heart was breaking.

I had a lot of time to think on the three hour drive home.  My mom and I went over and over the conversations, trying to dissect them and find the old Jim.  It all made me tired.  I mean, bone-tired-weary-to-the-core-curl-up-in-bed-on-a-rainy-day-taking-care-of-a-sick-kid-in-the-middle-of-the-night kind of tired.  It's impossible for me not to worry about my friend.  I know he is getting good care with people who truly care about him in every way, but that doesn't stop me from draining my own emotional reserves on his behalf.

And I want this to all mean something.  That's why I am trying so hard to embrace the small things in life and enjoy living as much as I can.  That's why I want to memorize the sounds of the kids' laughter and their weird comments and their beautiful smiles.  Jim obviously isn't gone from this mortal coil, but he's not completely here, either.  So I'm trying to embrace life and enjoy every moment.  Trying.  But that's so much easier said than done sometimes.  I can't always find the joy in every given moment. When I am in the middle of telling Lottie to focus on her homework for the twentieth time while Dallas drones on and on about dinosaurs and the clock is telling me that I should have started dinner already and both kids are hungry but not for what I'm cooking and the phone is ringing and my eye is twitching,  I can't channel my inner-Zen and think about how much I will miss this all when the kids are grown and gone.  Instead, I try to get through the minute by minute drama so I can eventually snuggle with freshly shampooed heads and find a sweet spot of time when no one is fighting or crying or arguing or pouting or hungry or hurt or angry or tired. And I think about Jim and think I should really work hard at finding those great moments because the future is so uncertain and fragile, but I know Jim would think that was a bunch of schmaltzy hooey and tell me to just keep on keepin' on.

So I'm raising my kids the best way I know how; I'm constantly thinking about T's upcoming surgery; I am pretending that the surgery isn't happening; I'm having dreams that end with me waking confused and bleary; I'm attempting to oversee a new deck project at our house; I'm reading books; I'm being a friend, a daughter, a mother, a sister; I'm smiling when I can and crying when I can't; I'm drinking too much coffee; I'm riding my bike; I'm trying not to think too much; I'm over-thinking everything; I want to be left alone; I want to be surrounded by friends; I'm taking one breath at a time.  I'm going to keep going because that's what Jim is doing, and that's what I can do, too.  For now, that's enough.

Tuesday, September 23, 2014

Of sleepovers and sprouting

We have all been marching along with the new school schedule this year where both kids get on the bus at the same time and come home at the same time.  I like that I don't have to get in the car to drive Dal to school, but sometimes trying to get both kids ready at the same time in the morning is maddening.  There is always the rush of getting dressed, brushing teeth, double-checking backpacks, and trying to stay clean.  We seem to be getting into a pretty decent groove, so hopefully that will continue.

Along with the new school year comes new teachers and new friends.  Both kids are absolutely nutso about their teachers, and they're both usually enthusiastic about going to school every morning.  This last week was exceptionally long for Lottie, though.  Monday night, I was at a meeting at the school when I ran into the mother of one of Lottie's pals.  Lottie and the girl are in different classes this year, but they still play together during recess.  The mom asked for my phone number so she could text me information about the girl's birthday party that was going to be on Saturday.  A sleepover birthday party.  The sleepover part was optional, but anyone who knows Lottie knows that she is all about keeping a party going for as long as possible.  I made the mistake of telling Lottie about the invitation before I had received a text from the mom.  Rookie error, right?  The rest of the week, I was peppered with questions about the party, whether or not I had heard from the mom, and if I thought Lottie could just show up at the party.  Saturday morning dawned with no word about the party and a 7-year old crying over breakfast.  I cried, too, because I felt like I had somehow let her down, and I wished I had never mentioned the party in the first place.  We planned a fun day of playing outside, a special dessert, and a family movie night; I could tell, however, that her mind was on the party most of the day. 

The sky began to darken around 2:30 that afternoon, and I called the kids inside.  I was in the middle of making the chocolate dessert that I knew my little sweet-toothed girl would love when I heard the chime of a text message on my phone.  I picked up the phone in between separating eggs to see a text from the mom inviting Lottie to the party...the party that started in twenty minutes.   All at once, I was angry, excited, irritated, incredulous, and frazzled.  I hadn't bothered to get a gift because I thought Lottie had been forgotten.  Lottie was sweaty and filthy from playing outside all day.  A serious thunderstorm was headed our way.  I could think of a million reasons why she shouldn't go and only one reason why she should.  Even though I wanted to erase the message, I knew I should let her go to the party.  After a quick whispered conference with T, I told Lottie what was up.  I know it sounds completely hokey, but the sun shone out of her eyes.  She hadn't been left out, and she was going to her first slumber party.  She ran upstairs to take a quick shower while T packed an overnight bag for her.  I tore downstairs to find and wrap a suitable birthday present from the box of surplus gifts I keep in the basement.  Before she left, I held her face in my hands and told her that if anything felt off or she just didn't want to stay, she could call us any time of the night to pick her up.  She hugged me tightly, kissed her brother, and skipped out to the car with her dad.  About two minutes after they left, the tornado sirens blared, and I wanted to run out in the street and call them both back home. 

I spent that evening with T and Dallas, and although it was cool --and totally weird, too--to be able to focus on just one kid, my head was with Lottie.  I wondered if she was getting along with the other kids at the party.  I wondered if the threatening skies and the heavy rains were scaring her.  I worried that she wanted to come home but was too afraid to say so.  Would she sleep well?  Would she sleep at all?  (And before all you other parents chime in with the "you-have-no-idea-wait-until-she's-a-teenager" stuff,  just don't.  It's never helpful and it diminishes what I am feeling now.  Not cool.)

Of course, in the end, Lottie had a fantastic time at the party.  She ended up staying with the birthday girl for most of the next morning while T and I paced around the house wondering when she would finally come home.  She seemed exactly the same but also a little older, a little more grown up.  It was her first night staying with anyone who wasn't family, and she loved it.  I was thrilled that her first sleepover had been a success, but if I am being totally honest, I was a little sad, too.  I realized that the first slumber party was just the beginning of many firsts that T and I wouldn't be a part of. Spending the night at someone's house doesn't mean that she's ready for her own apartment, of course, but it's the start of a whole new world for her.  She is starting to realize that there is so much more to life than just our home and our family.  My job as a parent is to give her those experiences and encourage her growth in every way; I just didn't know that it would all start so soon.  Teaching her new things will continue to be my job, but now a new part of my job is making sure that home is where she will always have a soft place to fall. 

Not too long after reading time Sunday evening, I noticed that I hadn't heard a peep out of Lottie's room in a while.  I went to check on her, and I found her fast asleep with her Lamby in her arms.  I took a minute to drink in her quiet, sleeping face before I called T in to see how quickly she had passed out.  I'm willing to embrace her newfound slice of autonomy as long as I can still tuck her in most nights for as long as she lets me.  

Wednesday, September 10, 2014

Questions or concerns

We met with Trevor's surgeon yesterday at Northwestern and set a date for the surgery.  October 13 is the big day, so this is really happening.

I like the surgeon a lot: she's funny and an absolute straight-shooter.  She tells it like it is, and she doesn't sugarcoat anything.  She described the pre-op routine, the surgery itself, and what would happen post-op.  T and I spent that discussion time asking a few questions and nodding our heads like bobble dolls.  At the end of the spiel, the doctor asked us if we had any other questions or concerns.

Did I have any concerns?

I mean, duh.

You know how in the movies there is a montage of life events that pass through someone's mind as that person faces danger?  That happened to me, except instead of past events, all I could see was the future.    I saw the next fifty years of our lives race before my eyes in the period of about five seconds.  So many happy times were there, flying by at light speed.  T was in every thought I had, so it wasn't like I was picturing life without him.  On the contrary, I was picturing our future together, both as a family and as a couple.

What I wanted to tell the doctor was that there are always concerns.  Always.  When someone is having a serious surgery, it's always a concern.  Any time there is anaesthesia or blood, there is a concern.  Any time my husband is going to be lying on a table for four to six hours, there are going to be concerns.

What I wanted to tell her was that she was going to be taking care of the man who makes me laugh every single day, of the father of my children, of the smartest guy I know, of my best friend, of the love of my life.  I wanted to tell her that she was in charge of getting every bit of that tumor out.  I wanted to tell her to get a good night's sleep and have a healthy breakfast that morning.  I wanted her to know that although I have the utmost confidence in her training and abilities, I will still be pacing in the waiting room, drinking cup after cup of coffee, and trying not to bite my nails until she comes out to tell me that my husband is okay.  I wanted to tell her that although she isn't a cardiologist, my heart will be in her hands.

But I didn't.  Instead, Trevor and I looked at each other, shook our heads that we had no other questions and concerns, and went to lunch.  For that moment, that was enough.

Saturday, September 6, 2014

2,190 days

My baby,

Today you are six years old.  I know I say it every year, but once again, I have no idea where the time has gone.  It seems like only yesterday when the doctor put you in my arms, and I thought, "A boy?  I have no idea what to do with a boy!"  Despite my concerns, I think you have turned out pretty darn well so far.  It's hard to believe that you are the same chunk-a-bunk baby who basically slept for the first twenty-four hours of your life, making everyone but me concerned that you would never wake up to eat.  Once you did wake up and start eating, you basically never stopped.



You have done so many things in the last year.  You finished pre-school at the Montessori Academy of Valparaiso, and you truly thrived there.  I will always be grateful for the wonderful program and amazing staff who helped guide you through the last two years.  Because of everything you learned there, you were more than ready to enter Kindergarten this year at Flint Lake.  I love that you and Lottie are at the same school, on the same schedule, and riding the same bus.  I thought you might be nervous about riding the bus to school, but you hopped on the first day like a boss and you haven't looked back again.  You're on the twenty-seventh list of sight words already, so I am eager to see what happens when you have mastered all of the lists.  Perhaps you will start reading Camus next.



Your interests are varied as usual as you begin your sixth year.  There has been a surprising dinosaur renaissance which prompted you to tell me that your school has a "fairly decent selection of dinosaur" books.  You still enjoy Star Wars, Teenage Mutant Ninja Turtles, and anything that involves any type of weapon.  Sometimes I worry about your love of "shooting" but then I remember that you love to sit down with a good book just as much.  Everything in moderation, my love.  Scatological humor is still number one here as well.  When you're feeling especially naughty, you talk about poop or butts because you know it annoys me.  I have a feeling that annoying me thing will continue for the rest of my life.




You're a funny kid because you're very literal, and things are pretty black and white for you.  You and Lottie are about as different as siblings could be: that makes it very hard for Dad and me to ever know exactly what to do or how to do it.  I think you're breaking out of your shell a bit, though, and enjoying new things with an ease that you didn't have before.  You have really enjoyed your tae kwan do class, and I hope it's something you continue to practice.  I love that you're in class with other kids but the work itself is individual.


One of the most exciting things in the last year is that you outgrew your egg allergy.  A whole new world of food has opened up to you now.  Some of the things you have been really excited to try, but eggs themselves, whether hard-boiled or scrambled, are not your favorites yet.  Maybe someday.  You're naturally a little wary of trying things with eggs in them: after all, you spent the first five years of your life being told to stay away from eggs.  However, you're slowly starting to accept that you can try new things without the fear of getting sick.

You enjoy doing things by yourself like reading or playing with Legos®, but you hate to be alone.  You want someone nearby at all times but that person should really not talk to you unless you desire interaction.  Total paradox.  I think it's great that you're so good at entertaining yourself, though.  That is a quality that will serve you well throughout your life.   But don't ever be afraid to get out of your comfort zone and open yourself up to others; I'm sure you'll find plenty of people who share similar interests.  After all, you're an amazing guy with a lot to share with the world.



*I love that you still love to snuggle with me before bed every night.
*I love that you are such a great brother.
*I love the way you are kind to Mimi and PopPop's dog, Sally, and help us take care of her and how you constantly tell Judy that she's the best cat in the world
*I love how you sometimes chill out on the living room couch and stare at the trees out of the window
*I love the way you laugh with your entire body
*I love the way you have started to create your own things with Legos instead of just following the building directions
*I love your bone-dry sense of humor
*I love how excited you are when we get a new catalog in the mail, especially if the catalog has anything to do with Halloween
*I love your freckled nose and your gorgeous, long-lashed blue eyes


Dad and I are proud of beyond compare.  In my wildest dreams, I cannot even begin to imagine all of the wonderful things life has in store for you.  Promise me that you will always stay sweet, forever love to read, and never ever change who you are inside.

You are always my best, best boy,
Mom








Wednesday, September 3, 2014

Shrink, shrank, shrunk

Today was Trevor's first CT scan post-chemoradiation, and the first time he has been back to NMH since chemoradiation ended.   He had the pleasure of downing some lovely banana flavored barium concoction, waiting for an hour, then being scanned for five minutes.  We had a quick lunch together then met with the medical oncologist.

The news was great: the tumor has gotten smaller and nothing has spread.  YAY doesn't even begin to describe how happy we were.  Things are progressing as they should, and it looks as though surgery will be scheduled for sometime within the next four weeks.  He'll have a month of recovery time post-surgery, and then he'll do a second round of chemo for about four and a half months.  He won't have to go into NMH every day like he did for the first round, so that is already a big improvement.  Plus, think how awesome it would be if he could keep the hospital gown and dress like an escaped mental hospital patient for Halloween!  Right?

Having a better idea of when the surgery will happen has been, I think, a relief to both of us.   The last month of normalcy in our lives has been fantastic, but we both know it is just a holding pattern until the next step in the plan to kick this cancer's booty.   We are trying to enjoy spending time together, spending time with the kids, and doing typical family activities.  In the back of our minds, though, we know it's only a matter of time before it will all come to a screeching halt yet again.  It's difficult to live with the mentality that we need to get a certain amount of things done "before." First we wanted to do things before chemoradiation, and now we want to fit in as much as we can before surgery.   Sometimes it feels like we're living at a far more frenetic pace than we were pre-cancer, and we really should be slowing down to enjoy the quiet, unexpected moments.  

I'm trying to take the time each day to stop and be mindful of  the small things that make a life a life: Trevor making me laugh until I cry in the middle of a quiet exam room, Dallas holding my hand as we snuggle at night, Lottie's enormous, beautiful blue eyes watching me as we read _Harry Potter and the Chamber of Secrets_ together.  These are the things that truly have meaning, and these are the things I need to learn to appreciate.   If this stupid, horrible, ruthless cancer has taught me anything so far, it's that all I really need to be happy can usually be found within my reach.   If that doesn't make me one damn lucky gal, I don't know what does.   Well, that and a big lottery win.   I could make the Mega-Millions have a great deal of meaning if given the chance.  

Saturday, August 16, 2014

He is the eggman, goo goo goo joob

For the first time in five years, Dallas is now one of the zillions of people in the world who can enjoy an omelet, a fritatta, a custard, or a lovely quiche.  The boy still can't have any dairy, but he is no longer allergic to eggs.

About a month ago, I took Dal in for a check-up with his allergist.  He hadn't been tested for his allergies for a few years as his doctor didn't see the point of putting Dal through unnecessary testing.  However, he did recommend that Dal be re-tested before beginning public school, and like the dutiful momma I am, I took him in.  I was anxious because the first test was a blood test, and children are typically not great when it comes to having someone stick a needle into their arm to draw bodily fluid.  I tried to stay very calm as we walked into the lab, and I promised the boy a trip to Target for a new toy if he could get through the needle stick without struggling or freaking out.  Before the nurse even got to us, I was sweating like I was standing in the Sahara Desert with no umbrella or water.  Turns out I could have saved all of my worry (and a jaunt to Target) because Dallas was fantastic.  He didn't move a muscle when the needle went it, and he even looked at the blood coming out and said, "That is SO awesome."

The blood test surprisingly came out negative for the egg allergy, so we moved on to the next step: the skin test.  The nurse made teeny scratches on Dal's arm and then dropped a bit of various proteins on the scratches to see if he would react to them.  A enormous hive popped up right away on the spot where the cow's milk protein had been placed, so we knew the dairy allergy was sticking around.  But once again, the scratch test was negative for the egg protein.   We quickly ran out that day to get an egg from a local convenience store.  The nurse did a fresh food challenge which involved putting actual egg white and egg yolk onto Dal's skin to see if it would react.  He passed that test with flying colors, and we made an appointment for the next step: the food challenge.  Dun dun DUUUUUUN!

Unfortunately, our first appointment was cancelled due to an emergency with the doctor.  Doh.  We rescheduled and went in yesterday, Friday.  Dallas couldn't have any sort of antihistamine for three days prior to the challenge, and he couldn't eat for two hours prior, either.  The appointment was in the Crown Point office (ugh) at 9:00 AM, so I woke Dal up at 6 that morning to shove some food into his face before it was too late.  (For those of you who know Dallas well, you understand the terror I felt knowing that he couldn't really eat the entire morning.  When he doesn't eat, he's like a combination of Godzilla, Denis Leary, and Bobcat Goldthwait.  It's ugly, really ugly.) The challenge went like this: Dal ate a teeny piece of hard boiled egg, was monitored for twenty minutes, then ate another teeny piece of egg.  Picture that for three and a half hours, and you have the gist of the challenge.  Dal complained that the egg was rubbery, but he willingly sent every piece down the hatch with no protests at all.  By 12:45 PM, we had confirmation that Dallas had outgrown his egg allergy.  Not only was he free to eat eggs, but he has to eat something with egg in it every day for the next two weeks.   Somehow I don't think he's going to be asking me to hard boil any eggs for him the near future, though.  He got his fill of those yesterday.

I made angel food cupcakes for him today, and it was a totally surreal experience to bake with eggs again.  I mean, everything I have made in the last five years has been egg- and dairy-free because I couldn't stand to ever have Dal feel left out of anything.  Separating the eggs for the cupcakes felt wrong, like I still thought I was going to essentially poison the kid by setting the cupcake in front of him.  Understandably, he's a little hesitant to eat anything with egg: we have spent the last five years telling him not to touch eggs and anything with eggs in it, and now we are basically forcing him to eat the incredible, edible egg.  Dallas is a by-the-book kind of kid, so this will take some time for him to get used to.  But in the meantime, I get to rediscover recipes that I have put away for years and try out some new ones as well.  The nurse said that outgrowing this allergy would make my life easier as far as food preparation, and I guess she is right.  Checking labels is no big deal, and cooking without the allergens is truly second nature now.   I'm just happy that a new world of food to explore has opened up to my best boy.