Stress

 We've all seen the articles.  They are all over women's magazines, wellness websites, those flyers in doctor's offices.  Stress is harmful to your health.  But hey, here's some ways to reduce your stress!  I'm looking at one now, filled with gems like deep breathing, practicing yoga, taking a bath, reducing your caffeine intake, learning to say no, and, of course, practicing mindfulness.  Okay.  Yeah.  After I'm done laughing, I feel like crying, the kind of crying that comes from being completely unseen by those who are not familiar with the world of severe special needs.

Let's go over a day with Janey.  We'll start with the morning routine.  We wake her up (that is, assuming she's ever slept, which is a big if).  We determine if the bed needs a complete change, and if she needs a shower due to...you know.  We determine her mood---is she screaming and biting herself?  Or manically laughing?  All this affects how long it will take to get her dressed and ready.  Because---we have to be out there soon waiting for a school bus that might or might not show up within a range of time that is up to an hour either way.  But I'm sure a little caffeine reduction and some good old deep breathing is what the situation calls for.

Then---the "easy" part of the day.  Janey is at school.  Now, we only have to hurry and do all the things that are impossible to do while caring for her---bills, housework, shopping, and oftentimes, sleeping.  In there someplace, we need to do long term planning.  Janey is 17.  There's a lot to be done before she turns 18, and we need to get on that---NOW.  By the time we can draw a breath, the bus is heading home.  We haven't gotten in a bath, or any mindfulness---shoot!  We have gotten in a lot of mind-full-of-stress-ness, though---the worry that never quite leaves us every time Janey isn't within our sight. We love and trust her teachers and aides and therapists, but we don't know how her day is going.  Is she having a tough day?  Has someone else having a bad day of their own yelled at her?  Is she confused, scared, bored, overwhelmed?  Is she safe?  The stress of having a child who doesn't communicate much at all with us---that base level of stress, even on the easiest day, is never, ever gone.

And now, Janey is home.  We are happy to see her.  We hope she is happy to see us.  Some days, she gets off the bus with smiles.  Other days, with screams.  We check if her notebook is written in.  Did she have a tough day?  Did she sleep all day at school after a sleepless night?  Did she have a lot of "energy" (read that as manic energy, pacing and repeating phrases and laughing randomly)?  We hang on every word written, desperate for a glimpse of her life away from us.  

The afternoon and evening.  Janey, even in the best of moods, makes constant demands---"Want to go for a car ride?  Want a shower time?  Want tuna?  Want salami?  Want cheese?  Want Buzz Lightyear?" and the non-specific but highly insistent "I NEED HELP!"  Sometimes, we try the stress reduction technique of learning to say no.  Any no, even after minutes and hours and days of yesses, is met with a scream, some arm biting, stomping.  As we deep breath our heads off, Janey repeats the demand that caused the no, every minute for hours.  The things she asks for, I know, are things to relieve her own stress, stress which I am quite sure is as pervasive and severe as ours.  The warm water of the shower, the music and movement in the car, the videos repeated over and over---she needs stress relief too, and she doesn't know, isn't able to know, how that stress relief works on us---how stressful it is to be her parent, to want to do anything on earth to help her, even as we are falling apart.

Then---bedtime.  Or not.  These days, a night where Janey falls asleep at a reasonable hour and stays asleep all night happens probably 1 out of 3 nights.  The other nights---another 1 out of 3 feature short sleep, with her falling asleep easily but waking at 1 or 2 am to never go back to sleep, or her finally falling asleep at midnight or 1.  The remaining third---no sleep nights.  No sleep at all.  None.  That was last night.  And when Janey doesn't sleep, ain't nobody sleeping.  She constantly wakes us, either by asking for the same things as daytime---"Salami!  Shower!" or by screaming, or by turning on the TV or one of the devices she has, loud and endless..."It's fun to act like animals!  Fancy Nancy! Little Einsteins! Forky! Three Little Kittens!" ... the tunes that play on constant repeat, in my mind even when they are not actually being blasted.

And then it's morning, and it all starts again.

Janey is the love of our lives.  She is amazing, fascinating, beautiful.  And it is not her fault, in any way at all, that the stress of caring for her is...there is so much I want to say here and I won't. And I won't do what I am hugely prone to do, what I am sure many of you are prone to do, to minimize, to worry that speaking the truth of the stress is somehow wrong, to pretend that I'm fine.  I wouldn't do that because I know I'm not alone here, that others are living this life, and that one of the hugest stressors is feeling alone in your struggles.  You aren't.  I'm not.  And with that, I'm having another cup of coffee---today, as every day, is not the day to reduce my caffeine.

Impossible things happen every day

 As I write this, it's nearly 11 pm, and Janey is wide awake.  Not an uncommon thing, to be sure, and I'm pretty sure she's not going to sleep at all tonight.  We've learned to tell, over the years, if it's going to be a sleeping night or not.  

What I've been thinking about a lot over this past month is how Janey's kind of sleep issues just are not much addressed in any kind of sleep advice I've ever read.  And I think that's because sleep experts, or parenting experts, or autism experts, unless they have a child themselves with Janey's kind of sleep problems, just don't believe us as parents.  

And it's not just sleep, I've realized over the years.  I don't think the experts believe how much the wrong food can affect Janey.  I don't think they believe that she can know so many words but be able to express herself verbally in such a limited way.  I don't think they believe that it is impossible to fully toilet train her.  I don't think they believe she can show physical illness in the ways she can.  I don't think they believe the extremes.  

Or if they do, they don't know what to do with the kind of extremes we as parents deal with.  It's easier to just discount what we are telling them and dealing with than to accept there might be areas they aren't up to helping with.

With the sleep---Janey can and has literally gone 3 nights with a total of 4 hours of sleep.  Not per night---TOTAL over the three days and three nights.  And she can still function---in fact, can still be jumping up and down and giddy on day three.  This happened over Christmas break, and it's happened before.  Before the break, we saw the other extreme---a two week period where Janey slept pretty much all day and night.  She came home from school and went to sleep, she woke up enough to sleepily go to school, she slept off and on there, she came home from school, ate a lot, and went to sleep again.  We tried near the end of these 2 weeks to talk to her pediatrician, to see her, but before that was possible (with the COVID surge, sleep issues are a low priority), the spell was over.  It was like she decided to catch up on all the lost sleep of many months, and once she did, she went back to little sleep.

With words and speech---I don't think any speech expert has ever really gotten what I've tried to explain about Janey.  She has the words, in her head.  But she can't access them easily.  One of the only ways I know she DOES have the words is the rare time I've caught her in exactly the right mood to do flash cards.  I ask her if she wants to, and if she does, she will name things that amaze me.  Recently, she identified a swan, broccoli, a lime, a skyscraper, a slug, a person crocheting---all within about a minute, all words I've never once heard her say before.  But the advice I've gotten or read to encourage speech never addresses how to help her retrieve the words she knows.

And toilet training---that's enough to set me off on a rant.  How is it that Janey has at several points been fully trained, only to lose the skill?  How is it that most of the time, she is trained at school but not at home?  Why does she often need what I'll call a severe change in the night, when she's been asleep?  You can write a hundred expert books of advice about motivation, about routine---those aren't the issues here.  Believe me, if expert advice worked for Janey in that area, we'd have been done with this particular problem many years ago.

The example of Janey not lining up with what is said to be possible that most haunts me---Janey motionless in bed in the hospital.  A doctor shaking the bed.  Janey doesn't move or make a sound, and the doctor says, almost with a chuckle, "well, she certainly doesn't have peritonitis!"  But she did, as a result of an appendix that at that point had been ruptured for two days, and would be ruptured another day before finally, she had life saving emergency surgery.  But someone with peritonitis CAN'T keep from screaming and moving when their bed is shaken.  They just CAN'T---unless they do, as Janey did.

My fellow autism parents are reading this with their own lists in mind of the "impossible" things their beloved kids do or don't do, I'm sure.  I'm preaching to the choir.  But why is it so very hard to get believed?  Is it because it's easier to give advice based on what you think is true, not what some crazed parents is telling you is true?

This is why I try very hard to not discount what others might think, in all areas of life, to be impossible, insane, foolish.  I know what it's like to be awake night after night caring for a child that can't possibly not be sleeping, to be astonished by the words my minimally verbal child is saying with ease, to have a critically ill child not being treated promptly because she is reacting in an impossible way.  Listen to parents, especially when they are speaking for children that are impossibly complex.  I love you, my incredible Janey.

Except for sleep...

 When people ask us lately how things are going for Janey, we usually answer that things are going quite well, except for sleep.  That's a big "except for"!

When Janey was younger, sleep was one of her lesser issues.  She actually slept pretty well.  There would be a tough night (or what we thought back then was a tough night) now and then, and once in a long while a very tough, almost no sleep night, but for the most part, she slept fairly normally.  This changed probably three or four years ago.

Now, it's a fairly common event for Janey to not sleep at all.  All night, not a wink.  No moments of drowsing off, no hour of restless sleep, no nothing.  Just no sleep.

It's also quite common for Janey to sleep amazingly little for nights on end.  A recent weekend, she slept 5 hours over the course of three nights.  

On the other end of things, sometimes Janey sleeps for a very long time---12 or 13 hours.  This isn't always after a sleepless night, as you'd think, but during a whole series of nights when her sleep is better.  Often there will be a night of normal sleep, a long night of sleep and then another night of normal sleep---and then...usually the sleepless nights start again.  But even that pattern isn't a regular pattern. Often, there is no pattern at all.

There's also little pattern to how Janey does after not sleeping.  Sometimes we get reports from school that she's very sleepy, and even that they had to let her sleep a lot of the day.  Or if she's home, we see that---times when she's just going to sleep all day even though we don't want her to, because you would think it would lead to another sleepless night.  But it doesn't always---sometimes she sleeps all day and then all night.  Other times, she is perfectly fine after not sleeping---as lively and happy as the day is long, and it's pretty long for us as parents, those days.

As you can see, there is little consistency to Janey's sleep.  This is hard on us, and I'm sure even harder on her.  I can't imagine how it feels to just not be tired at a time when you know people want to sleep, and even more how it would be if there isn't much you can do to entertain yourself

When Janey doesn't sleep, either Tony or I don't sleep, or we try not to.  Sometimes it's impossible not to drift off for a minute, and usually, Janey is okay when we do that.  She is not an eloper---she never tries to leave the house.  She usually spends her long awake nights playing with her devises, watching the same videos over and over, including the dreaded Finger Family, the video that must have been designed as torture for parents.  The biggest problem is when she decides to have a snack. Chips wind up all over the house, stepped on into little pieces, ice cream is left out and melts onto her bed, soda is spilled all over the floor. 

After years of not getting her period for some reason we (and doctors) never figured out, Janey seems to be getting it more regularly now, and I'm sure those cycles have a part in the sleeping and not sleeping, although we can't quite match them up with any part of a cycle.  Another factor is what Janey eats.  I've often talked about how chocolate can keep her up for days, and most everyone knows not to give her chocolate.  However, Tony and I are probably to blame for one recent awful stretch of sleepless nights, because we let her have regular coffee for a few days VERY first thing in the morning, thinking that would be okay.  She loves coffee---we all love coffee---and she is 17, certainly old enough to have coffee with the rest of us.  But from now on, she will have her own "special" coffee, decaf.

I don't see the sleep problem getting better any time soon.  We have tried the medications her pediatrician has said are okay to try, and they make little difference.  We have tried long walks during the day in addition to making sure she gets a lot of other exercise, we have tried routines, we have tried strict bedtimes, we've tried most everything we can think of.  When Janey is determined not to sleep, she isn't going to sleep (and when she is determined TO sleep, she is going to sleep).  Luckily, since Tony has retired, we can usually get a nap during the day if we need to, trading off if Janey is home.  

From what I've heard from all of you out there, Janey's sleep issues are far from unique.  I wonder if this is a problem more with girls with autism than with boys, due to hormones or just the different nature of autism in girls?  Although I wish all of you could have a good night's sleep every night, it does often help thinking of others out there awake like we are, others who live for that first cup of (non-special, fully caffeinated) coffee.  All of us in this club we probably didn't intend to join but now are lifetime members of, the club of those who care for and love a girl or woman with autism---let's raise a cup of coffee to our perplexing, fascinating and often sleepless girls.

Why does success have to mean progress?

 Facebook lately gives me some memories to browse every day.  I've been on the site for 12 years now, and it's fun to look back at what was on my mind four, seven, nine or more years ago to the day.  Yesterday, it dealt up something cute Janey said 12 years ago, when she was 5..."Don't put your fingers in ice cream!  That's NOT funny!" which I reported I didn't know the origin of.  I had a chuckle, but then started to think about how such random and funny utterances come up now and then from Janey, and that I'd still be surprised and happy to hear her say something like that today, all these years later.  She hasn't progressed in her speech.  She ebbs and flows, but her talking doesn't get better or worse much as the years go by.

For a minute, thinking about her lack of speech progress depressed me.  She's had so many years of school, of speech therapy, of ABA, of just hearing us talk to her.  Why hasn't her talking gotten better?  Why hasn't she made any progress?

And then I started to think---why is the only measure of success with kids like Janey that they progress?  Why are IEP goals always about reaching the next level?  Why do people (us included) hang on cool things she says to see if they are heralding a new era of talking?  Why does the fact that Janey stays steady with most skills not make us happy? 

Progress, it strikes me, is how we separate groups of kids with autism.  All kids diagnosed as being on the spectrum start out behind in some area.   But the ones we call "high functioning" or "mild" are the ones that learn new skills, that come close to climbing up to the norm, that get with the program quite literally.  Those like Janey, who mostly have a steady state, are by the very fact that they are the opposite of these successes considered failures.  Not that anyone would say that, not that it's what we think as parents, but if you look at measurable progress and there is none---what else would it be called?

What if that wasn't how we measured kids like Janey?  What if her occasional bursts of speech, her momentary shows of understanding we didn't know she had, were just seen as part of her autism?  What if we didn't hang onto the idea that she should be progressing?  What would we use instead to measure success?  What would be our goal?

Happiness.  Pleasure in daily routines.  Connections to others.  Just being herself, and having herself accepted as a meaningful member of society.  That's another way to measure success.

If I use that as my yardstick, I think Janey is a success.  She is happy much more of the time than she is sad.  She enjoys her daily routine---the bus ride, school, coming home to a meal made by Tony, watching her familiar movies, taking a car ride, jumping up and down, running in the driveway.  She has connections to many people---more than I do, probably.  She is loved at school and home, she has fans out in the community---she's a bit of a celebrity at the grocery store.  She is herself, always.  As for being accepted---well, we accept her, her school accepts her, our neighbors accept her.  Wider society---that's still a work in progress, the kind of progress I'm talking about here, and one that isn't her job but the job of said wider society.

I'm asked every year at her IEP meeting what my vision is for Janey.  If I were totally honest at these meetings, I'd say just one thing---happiness.  Let her be happy.  Give her reason to be happy.  Put supports in place so she is happy for all of her life.  That's success.

Struggling a bit

The last three or four days have been tough ones for Janey, and for me.  She's been crying a great deal, more than in ages.  We had decided to take her to the doctor today if she wasn't better, not because she seems sick but just because it's so hard for her to tell us if she is sick or if something hurts, but today is a big improvement, so we are waiting on the doctor (doctor's visits being hellish when she's not happy).

We really don't know what's up with Janey.  Our best guess is boredom.  Summer school is over and regular school doesn't start until September 9th.  Janey doesn't like there not to be school.  She enjoyed summer school a lot, from all indications.  She likes activity and movement and going places and doing things.  Tony is doing his level best to take her for a lot of car rides, which is what she asks for day and night between tears, but the second we are home from one car ride, she starts crying for another one.  The car has over 100,000 miles and is showing signs of starting to be unreliable, using a lot of oil, but besides that, constantly being on a car ride is just not a realistic way to live.     (Picture is Janey on a better mood day)

Even before this recent crying time started, I was feeling pretty depressed, more so than in probably years.  Like Janey's crying, I'm not sure why.  Nothing in particular had changed. I think some of it, also like Janey, was feeling let down after a great time.  I went for almost a week to see my sister-in-autism-parenting, Michelle, and her family.  It was a great trip, even with a 17 hour train ride out and another back (I don't fly!).  I relaxed so much!  It was great being with Michelle and her family---partly because I think only another autism family totally gets the life, and partly because of how much I love Michelle and all of her family, how much fun they are to be with.  Coming home was hard.  Not that I don't love my family more than anything, but returning to regular life after a really great break isn't easy.

Janey turned 17 last week.  It was a good birthday, one of the first times I felt like she kind of got the birthday thing.  She readily said she was 17 when asked, she requested it be cake time and blew out her candles with glee, she loved us singing to her---it was a very nice day.  Her birthday, as most of you know, is extra special because it's also her brother Freddy's birthday.  He turned 24.

Even with the birthday being a good day, birthdays are another thing that sometimes hits me hard.  As Michelle and I talked a lot about, once your child is pretty much no longer a child but an adult, it's time to accept certain things just are the way they are.  I am working to accept Janey will never be fully toilet trained.  She will never talk in a way that is truly communicative.  She will never learn to read.  She will never be able to be unsupervised.  She will remain much as she is---functioning at a toddler to preschool level for life.  May the future prove me wrong about any of this---I'd love to be wrong.  But I am not wrong. 

I try very hard not to let myself get depressed or in a self-pity spiral.  This isn't out of some feeling that I have to deny my feelings, or some Pollyannaish delusion.  It's for a couple other reasons.  One is that knowing myself, I do better if distracted.  Letting myself go to dark places feeds on itself.  If I make myself stay busy and chipper and active, I feel better.  The other reason is that if I give in to depression, stay in bed all day, feel unable to do things, there's still Janey.  Someone still needs to care for her.  And Tony and I are the only ones that are available for the job, so any time I don't feel up to it, it's Tony's job. My mood and depression affects others, by putting an undue burden on Tony and leaving Janey with just one caregiver.  The conventional wisdom which says all that stuff about having to care for yourself first, having to put on your oxygen mask before your child's---well, that ignores reality.  Lots of things sound great in theory, but theory doesn't do much when faced with a screaming, crying daughter.

And so---what do we do?  We do what all of you do.  We get by.  We wait eagerly for school to start.  We take Janey for as many rides as we can.  We comfort her as best as we are able.  We trade off sleep, we trade off eating, we trade off moments to recover.  

I can't give in to depression, but I can admit to it.  It's a tough life.  It's tough for Janey, and it's tough for us.  Love to all of you out there living a similar life.

 

The summer so far

 Janey started summer school today.  I'd like to tell you how it went, but I really have no idea.  She went off on the bus happily, and came home in a fairly good mood, but the time in-between is one of those black holes we as parents of kids like Janey face.  There was no note in her backpack.  I don't know who her teacher is.  I know where the school is (it's not her regular school, as all high school students with special needs go to summer school in one place) but that's about all.  If I don't find out more tomorrow, we will make some calls, but it's a tribute to my general faith in the Boston Public Schools that we are sending her at all, I think.  Of course, we asked Janey about her day, but that has not once in her 13 years going to school yielded any information.

The summer up to this point?  Average, I'd say---not that each day was an average day, but it hasn't been an especially good or bad summer.  We've had some very hot days and some weirdly cool days---the 4th of July featured the same high temperature as last Christmas did---and we've had a good deal of rain.  We've taken Janey for a lot of car rides, but as so often happens in the summer, I don't feel like we've done enough else.  We've played in the driveway a good deal, which mostly means Janey runs around holding her iPhone and listening to YouTube videos.  She has watched "Toy Store 4" probably 100 times.  She's eaten lots and lots of food, luckily, mostly very healthy food, which is why she is able to eat from dawn until dusk and beyond without severe weight gain.

Sleep has been a problem.  As Janey gets older, it's one area that is more of a problem than it used to be.  Just tonight, she's been awake, asleep, awake, asleep and now awake, all since 7 pm, and it's 11:30 now.  There have been lots of nights without any sleep at all, on a couple occasions, two nights in a row.  To us, it seems impossible.  I truly just don't know how she can do it, without napping during the days.  Other times, less commonly, she'll sleep most of the day and most of the night.  Her sleep just doesn't seem to have the pattern that most everyone else's sleep has.  And that would be fine, except we really can't sleep when she isn't sleeping.  We can catnap, but she wakes us up often and we never sleep deeply, as we really need to keep an eye on her.  We are thankful she's isn't in any way an eloper.  Our house has a front and a back hall with doors, so kind of an airlock, but I'd say in all her years she's only ever gone into the halls even without us once or twice.  So we don't worry about her escaping, but more about her dumping food around or having toileting issues or tossing bowls onto the ground for fun (a recent new hobby)

Janey did have a filling done under general anesthesia last week, which went very well.  She was happy and cheerful even going to the dentist, which to me spoke to how bored I worry she is at home.  I feel guilty over this boredom, but it is so very hard to get her interested in anything new.  I think I'd go out of my mind watching the same movie over and over, or taking car rides to nowhere for hours, or listening to the same music over and over while running up and down a driveway.  But when I try very hard to introduce a new move, or when we try to take her for walks around the neighborhood, or to play some new driveway game, or just to shake things up a bit, she is not at all interested.  Maybe it's us, because she certainly seemed to enjoy going to the dentist and to school.  But still, I feel a huge amount of guilt over her limited range of entertainment.  I know I've written about this before, but it's on my mind so much.

Janey will be 17 next month.  That shakes me up.  When I was 17, I left for college.  17 was the start of my adult life.  For Janey, 17 will probably be much like 16, or 15, or 5.  Does that matter to her?  Is there any way I can find out?  Is Janey happy with her life?  Does she think about what her life is, what she wishes it was, what it can or can't be?  Is it enough that most of the time now, Janey is fairly content, or is there more that we should do?  Does she long for more?  There are so many things I don't know about Janey, although our lives are intertwined so closely.  How I wish I could ask her so many things---starting with the little things, like how school was today, and leading to the big things.  Until I can, if I ever can, I feel a huge weight of obligation to make the right decisions, to provide the right enrichment, to protect her when needed, give her freedom in the little ways I can, to make her life meaningful.  I hope I can do even in a small part what she deserves.

The Question

 A few weeks ago, I had my 5th bout of diverticulitis in 3 years, and this time, went to the emergency room, as it had been only 3 weeks since the last bout (and only about a week since finishing antibiotics for that bout).  To my surprise, I wound up being admitted.  I've never spent a night in a hospital for my own illness except for being born and having my three kids.  It was eye-opening!  I don't know if any other mother of a child with special needs has had the silly fantasy I've had, of a couple days rest in a hospital bed, guilt-free because you don't WANT to be there, but HAVE to be there.  At some of the toughest moments of parenting, I've thought about how I could lay there, get food delivered to my bed, read, relax and not feel like I was being a bad mother being away from Janey.  Well, as I imagine most anyone who has actually spent sick time in a hospital knows, that was a pretty deluded fantasy.  I was in a double room, slept not at all due to a roommate who was having a lot of night issues which involved pain and screaming and yelling at nurses.  I couldn't eat at all, due to my illness. I didn't read a bit, due to being anxious and also having a coffee withdrawal migraine that just about did me, and I felt guilty being away even under the circumstances.  I stayed two nights, and was very happy to come home when I did, on heavy antibiotics and with an appointment to discuss possible surgery for my diagnosis, smoldering diverticulitis, a rare form of diverticulitis that never really goes away despite treatment, except if you just cut out the sections that have it.

I'm okay for now, but what looking  back hits me the hardest about the whole experience is the question I was asked by a doctor as I was being admitted.  I should have seen it coming---I know it's something they ask, but I didn't.  After going over my medical history, medications, stuff like, the doctor said "Now I'm going to ask you something else.  If something unforeseen and tragic were to happen, and you were dying, would you want everything done to keep you alive?"

I was thrown for a loop for a minute.  I just didn't know what to say.  After thinking a bit, I started on a long, rambling speech about how of course if I were brain dead and had no hope of conscious life again, or if I were going to need life support forever....those kind of provisos.  But she said (and I don't think this lady had the greatest bedside manner) "We are asking it more like a yes or no question".  And so I said, before I thought about it more, "Yes!  Revive me!  I have a 16 year old daughter with severe autism and I have to live forever!"  She answered "That sounds very reasonable", probably taken aback by my lack of basic knowledge of the inevitability of death.

And of course, in the moment, I meant it.  I've thought, as we all have, about how someday my children will hopefully outlive me.  But to think of it concretely, as a question like that, not that it was probably going to come up from that hospital visit, but thinking of it as something that COULD happen---wow.  It's a scary, scary thought.  

It was interesting how Janey reacted to my being in the hospital.  I've gone away for close to a week at a time before, to visit my parents in Maine, and I plan to go again this June, but those times, I prepared Janey well in advance.  I talked to her a lot about when I would be leaving and when I would come back.  This time, she came home from school on a Monday and I wasn't there.  She knew I was in the hospital, and I think she probably related that to when she herself was in the hospital, for something far more serious.  I think she was scared, although she really couldn't express that.  When I got home, she clung to me for a few days---something she almost never does.  I talked to her about what happened, reassured her I felt better, told her I didn't think I'd have to go back to the hospital soon but that if I did, I'd be home again after that soon---all that.  But with Janey, we never really know what she understands.  

Lately, we've noticed Janey is quicker to burst into tears over things.  Sometimes we have no idea what is up, but often, it's when she overhears us talking about anything even slightly upsetting.  I don't know if she reads our tones or understands or words or a combination of both, but she certainly is affected by what is said around her more and more.  She gets over this tears pretty quickly, and that kind of emotional up and downs is certainly something not foreign to any teenage girl, but unlike most of those girls, it's very hard for her to understand degrees of seriousness, to be reassured by reason and facts.  She lives in the present.  Even telling her we'll give her a car ride in a few hours or that school will be back after a vacation is more than I think she really can grasp.  We explain and reassure anyway, because we really don't know exactly what she does get, but it breaks my heart to think of her scared by her lack of understanding.

Before I was admitted, while I was in the emergency room, there was a woman a few beds down.  I never saw her, as there were curtains up, but I certainly heard her.  She screamed almost non-stop, for four hours.  At first I wasn't sure she was verbal, but then at a few points she stopped to ask for specific painkillers, and from the nurse's not quiet talk outside my curtain, I gathered she was seeking drugs.  But there was more going on than that, and I heard a nurse talking to a supervisor at her group home.  I don't know her story, of course, but of course, I thought of Janey.  I thought of her in pain, being brought to a hospital unable to communicate.  There didn't seem to be a lot of sympathy or caring for that woman, which I guess I can get---her screaming was pretty loud, and she was doing other things like making herself throw up and lashing out.  But still---I drew parallels, ones that might not be there, to Janey, to those who for so many reasons are not in the mainstream of society, who can't advocate effectively for themselves, who will always be dependent on others.  And that certainly added to the kick in the heart that I felt a few hours later when asked about my own mortality.  I have to live forever.  Janey, I wish I could.