Cabin fever for a year

 I woke up this morning and thought "Great---another day".  That's not a positive thought, and of course right away I told myself that I shouldn't feel that way, that just being alive and in a warm house and with food and health care and a family around me should be enough.  And it should, and I know that, but boy, is this endless pandemic making life with a teenager with autism tough.

Janey hasn't been happy.  School is complicated and off and on, but hopefully she'll be going more regularly soon.  However, this past week was vacation week.  Which did make us all laugh a bit, and brought up the inevitable line "vacation from what?"  In addition, it snowed off and on for days, never a blockbuster storm but enough so that to get out of the house required shoveling, and that any outdoor activities were not really possible.  Janey is bored.  She has had a life that's been incredibly limited for the past year.  We all have, but she has far less resources to keep herself happy and entertained.  She has no interest in toys, no hobbies, no ability to text friends or video chat or do crafts or cook or do just about anything that could keep a teenager happy when stuck inside the house for a year in a row.  We try, of course.  But even trying something as small as getting her to watch a different movie or TV show results in screaming, in arm biting, in anger. 

The list of what Janey likes to do at home is very, very limited.  She likes to eat, to watch a very small list of shows and movies on her iPad or on TV, she likes to have Tony take her for a car ride and she likes to snuggle on her bed.  Except for the endlessly repeated viewings of Toy Story 2 and 4, the activities require our help. 

Snuggling is a ritual---we have to stop whatever we are doing, go to her bed with her, watch as she puts a blanket over herself (getting her to do that on her own took months of work) and then lie down next to her.  We are supposed to stay there for about 30 seconds, then she has us get up.  About 5 minutes later, she gets up herself and it all gets repeated.  If we refuse to snuggle, she gets hysterical, screams, bites her arm, pulls our arms, cries...and it lasts however long we refuse.  If we refuse all day, it lasts all day.  Needless to say, we give in after a while.  It seems like a small thing, but it makes it impossible to do anything without constantly getting up and completing her ritual.  

Car rides---her favorite thing on earth.  Every morning, from the second she wakes up, she asks for a car ride.  She mixes thing up a little by asking sometimes for "clothes on" (whether her clothes are on or not) or "shoes on" or "jacket on".  We explain, as patiently as possible, why a car ride can't happen that very second.  Perhaps it's because it's 2 in the morning, or because the car is covered with a foot of snow, or because we just got back from a two hour car rides and we are exhausted.  No reason works, of course.  If she wants a car ride, she wants a car ride.  The car rides are rides to nowhere, rides around routes Tony has figured out over the years.  They listen to music, which depending on Janey's mood has to either be the same songs over and over or each song quickly advanced to the next song when she says "Music, please!"  In a pattern that you might notice, if we refuse, there is screaming, arm biting, hysteria---not always safe in the car.

Eating---Janey loves to eat.  Luckily, Tony loves to cook, and he's wonderful with her eating.  She eats a great variety of foods, mostly healthy. But her greatest love is salami.  She eats salami completely without a stop button.  We usually get her some good salami every day---we are trying to get only ones without a lot of additives or MSG or dyes or so on, and they are pricey.  But one salami pack never makes her happy, and much of the day is spent hearing her ask for salami, us telling her we are out of salami, her going to the fridge to rummage and see if we are lying about that (we aren't), her being angry there is no more salami...you get the picture.

And TV watching.  Janey used to watch more of a variety of shows, but this past year, she watches mostly Toy Story 2 or Toy Story 4.  We know them both by heart.  We are so tired of them we can barely take it.  Occasionally we can kind of force another show---sometimes Courage the Cowardly Dog, Penguins of Madagascar, Angelina Ballerina, Kipper, Coco---but those are being seen less and less.  If anyone monitors our Disney Plus viewing, they must be truly confused as to why anyone would need to watch Toy Story pretty much around the clock.

A pretty good movie, but boy, are we sick of it

We try hard to make Janey's life more interesting.  We try to dance with her, read to her, play toys with her, have her help us with things like snow shoveling or laundry or sweeping the floor.  We can, with much trial, get her to do these things for maybe two or three minutes.  Then she is done, and nothing on earth can make her do them longer.  

In normal times, we are able to mix things up.  There is school, there are car rides that actually go someplace, there is outdoors, even if she holds a device for watching her shows, there are stores we take her into, there are trips and there are visits and there is just regular life, or regular life pre-pandemic.  But the year of not being able to do these regular things has resulted in Janey doubling down on the things that feel safe and familiar and comforting to her.  I truly worry that it will take a very, very long time to get her back to where she was a year ago, if we ever, ever do.

The toll on Tony and me---the noble, long-suffering, perfect autism parent model I sometimes feel we are all expected to follow tells me that shouldn't matter.  But the truth is---we are not doing well.  We are really not doing well.  We are a mixture of bored and frustrated and tired and concerned and overwhelmed.  This feels endless, and at times, impossible.

Schools reopening, slowly, will be a help. The vaccine distribution, glacially slow and poorly done here in Massachusetts, will be a help if it ever gets going.  People doing whatever needs to be done to get this mess under control will be a help.  But I feel for the long term consequences.  I fear for all the Janeys in the world.  I fear that it will take many years to recover from this horrible year.  I am fighting my impulse to be hopeful and positive, to say I think some good will come of all this, to soften what I am really feeling, but I won't.  I will just say I hope you are all holding on, and healthy, and that you know you aren't alone.

Janey at 15

It's hard to believe Janey is 15.  Some ages seem like a jump to me of more than a year, and 15 is one of those.  It seems a lot older than 14.  14 still seems like part of childhood.  15 feels like definitely teenager-hood, and not that far from adulthood.  It doesn't seem possible.

So, who is Janey at 15?  By 15, I think you are who you are going to be, to a huge extent.  I can remember myself vividly at that age. It's the first age that feels like part of now, like years have gone by but in some basic way, I haven't aged beyond the person I was then.  I don't mean I haven't had a lot of life experiences, or learned a lot along the way, but my personality then is my personality now, to a large extent. 

When thinking about who Janey is, I both try and don't try to separate out the autism.  I can't and don't want to totally separate it.  It's a big part of who she is, and an important part.  But it's not ALL of who she is.  There is a lot of her that I am quite sure would be her no matter what.

Janey is a cool person.  She has strong likes and dislikes.  She likes music, but not just any music.  She loves British Invasion 60s music more than anything else.  She also likes most songs with a very strong beat---disco, some country, some dance type music.  She is not a fan of soft rock or slow songs or most of the country I like.  She likes some Broadway music, but not most.

She loves food, most of all what her father makes her.  They share a deep love for steamed vegetables (something I would not eat on a bet) and for eggplant and Chinese food and cherry tomatoes and raw onions.  She is the world's hugest salami fan.  She's a food snob.  Rarely does a bite of school lunches pass her lips.  Food needs to be fresh or freshly prepared or expensive!

Janey has gotten more into movies lately, particularly just a few movies.  She watches "Coco" and "The Emperor's New Groove" every day, broken up now and then by "Pocahontas" and "Home".  We are glad that a stage she had for a while of watching kids' YouTube videos and rapidly switching from one to another seems to have subsided, but it could come back.  Her favorite kids' TV show right now is "The Cat in the Hat Knows a Lot about That"

Car rides are still one of Janey's favorite things.  If she had her way, we'd spend most of our days driving about on a car ride.  She seems to love more than anything watching the world go by as she listens to music in the car.

Janey has a temper.  When she's told no about something she wants to do, she is extremely quick to anger, to scream.  More than she used to, though, she does get over it.  That doesn't mean she doesn't ask again, a few minutes later, and scream again if the answer is still no.

A sense of humor is one of the best things about Janey.  She loves to laugh with and at us.  She is so happy when we are all happy.  She rewards funny little songs and sayings with a huge smile and hug.

Sometimes I make myself step back and look at Janey from the perspective of an outsider, someone who doesn't yet know her well.  To that person, how would she look?  Well, most people do see her and know that she is not completely typical.  She does some things that look typically autistic, like flapping her arms.  Her speech is not generally in full sentences, unless she is scripting or using echolalia.  It's mostly requests..."Want a car ride?  Want salami?  Want cuddle?"  It's extremely rare she simply comments or states things.  She still bites her arm quite a bit, when angry or upset but also when very happy---it's a sign of strong emotions.  We hold her hand most of the time in public, not because she's a runner but because she is unpredictable.  She can sometimes poke people's stomachs or grab things that are dirty or unwise to grab or decide to take food out of someone's hand she feels should be hers.

Janey has grown up a lot over the years.  We can talk her down from more of her emotional crises, we can understand more of what she needs and wants, we can give her the tools to entertain herself, we can tell her to wait a few minutes (some of the time), we can even get her help with things like bringing us a needed item. 

If you had seen Janey at five or ten, you would probably be surprised at Janey now.  It is why I hope that those with girls like Janey who are younger than her keep up the faith.  My dear friend Michelle told me it would get easier, and she was right.  It did.  Either that, or we changed. 

I don't picture a "typical" Janey much.  A typical Janey would not be Janey.  It would be someone else.  I don't want Janey to be someone else.

But in saying that, I still feel fear.  I fear the world is not ready for Janey and her sisters and brothers in autism to become adults, to live in the wider world.  It's part of why I want the world to know Janey, to know her as a person, to understand that she exists and is as worthy of a life as anyone.  I worry, in my darkest moments, that the world will not embrace Janey, that the worst parts of the world will take advantage of her.  That is what keeps me up nights.  I want everyone to know the true Janey---not just the easy to talk about parts, but what she really needs to be a healthy, included person in the world.  It is why I talk for her.  I feel like I have to let the world know she is part of humankind, just as she is.  Not a sanitized version of her, not a technicolored dream version of her, not a doom and gloom and how tough a lot we have been dealt view of her, but the most accurate view of her possible.

Janey will start high school in 11 days.  I am scared.  I am scared about a long bus ride she will have to take to go to the great program we chose.  I am not scared of the time she's actually in classes, because the Boston schools have been very good to Janey.  I'm scared of the meanness that does exist in this world, of any moment in Janey's life when she is not being carefully watched, of her inability to tell us about her days, of her beauty and her innocence.  I love her so much.

Janey, thank you for being you.  We have been lucky to have these 15 year with you.  I hope we have many, many more together.

The Easter Bunny Hunt---A Story In Pictures

The quest begins.

 Those of you who have read this blog much mostly know we don't give Janey chocolate, because when we do, especially after noon, she doesn't sleep.  At all.  Whether it makes sense or not, it happens, and it's why I don't discount anyone's food issues or theories.  It doesn't seem like just a little chocolate could have that big an effect, but still, it does.  However, we make one exception.  There is nothing on earth Janey likes more than a chocolate bunny.  She often asks for them at random times, like the middle of the night in the middle of the summer.  So, for Easter, she gets a bunny.  We usually get it on Easter day, not to have it around the house ahead of times for her to find and eat at the wrong time.

Empty Rite-Aid bunny rack!

We set out this morning to get her the bunny.  The first place we went was the Rite-Aid.  It's where we get prescriptions, so we are there a lot.  The pharmacist said a big hi to Janey, and she smiled at him.  But...no bunnies!  The Easter area was completely empty of any chocolate rabbits.

Picking out salami

So we moved on, to the grocery store.  Janey and Tony often shop there together.  We picked up a few other things we need before we looked for bunnies.  High on the list, as always, was salami, Janey's hands-down favorite food.  Janey picked out some with Tony in the main salami area, and then ran off to a nearby auxiliary salami area to get another kind she wanted.  After we'd loaded up on salami, we got a few other things, and saw a worker who is always so sweet to Janey, and told her Happy Easter.  She has a grandson with autism, and it's always fun to have her talk to us.

Auxiliary Salami Area

Finally, we went to look for bunnies at the grocery store, but again, no bunnies at all!  It was like there was some huge run on bunnies!   Janey saw some Easter cakes that looked interesting near the cashier, but we resisted them.

No bunnies at the grocery store either!

Some interesting cakes

Salami choosing

 We went to the quickest line, and missed going to the line of a cashier who is yet another Janey fan, but we waved to her, and Janey gave her a smile.  Out by the car, Janey picked which salami to first try. 

We continued our quest at the Walgreens, and there, finally, we hit pay dirt.  We found bunnies!  Janey picked out the one she wanted---not the biggest one, but a smaller sweet little guy.  The cashier there didn't know Janey, but was so sweet to her, talking while realizing she probably wasn't getting a response.  She asked Janey to give her a high five, and Janey did.

The whole quest made me happy.  In our little part of Boston, where Tony has lived all his life, where Janey has lived since birth, we feel included.  Janey is part of the community.  She is valued and treated with kindness and respect.  What more could we ask?  Happy Easter to all of you who celebrate it, Happy Passover to those who celebrate it, and Happy Day to everyone!

Finally, bunnies!

Bunny time!

"I hate you, Mama!"

Yesterday after school, Janey got off the bus cheerfully, and I was determined to keep her that way.  We snuggled, I gave her each snack she asked for, a shower when she requested one, and then I put on the shows she wanted.  And changed the shows when she changed her mind after a second or two.  And again.  And again. And again.  Then the phone rang, a doctor's office wanting to set up an appointment, so I couldn't instantly change the show.  I managed to get the call done over Janey's increasingly loud requests.  Then I said "What show do you now?"  I do freely admit my voice had a hint of annoyance in it.  I wasn't yelling, I wasn't openly angry sounding, I don't think, but I didn't sound patient.

That was enough for Janey to get furious.  She screamed, bit her arm and spilled a bottle of soda on the floor.  I made her help me clean it, and then put on the show she wanted, which she instantly turned off, glaring at me.

Then she said her favorite new phrase.  For background, I'll say that one day when she was very angry and lashing out, I told her she needed to tell me how she was feeling in words, and I gave her a lot of example phrases---"I'm angry at you, Mama!  You made me very mad!  I don't like what you did!  You aren't listening to me!"  And then, because she learns through hearing phrases and I don't want to censor her, I added "I hate you, Mama!"

Well, she ignored all my other suggestions and went right for that last one.  Since then, she's been using it often.  Sunday night, she screamed it in fury so Tony could hear it a house away.  And yes, that is what she said yesterday.  "I HATE you, Mama!  I HATE YOU SO MUCH"

I was proud she added in that last part of the phrase herself, despite the sentiment.  I said "It's okay if you feel like you hate me right now.  I love you anyway.  Sometimes people do feel like they hate their mothers, and other times, they feel like they love them".  Just so she was clear where she stood at the moment, she said "feel like you HATE your mother!"

I have to admit---I kind of liked the idea that having an autistic, low verbal teenager might mean that I would escape some of the teenage drama.  It seemed like I had, at first.  But lately, I am reminded that in so many ways, Janey is like any other teenager.  She has times when I annoy her and anger her to the point she can barely take it.  I get that.  And I know how that might be even harder to deal with when you aren't able to fully communicate what you want all the time, and when you spend a lot more time with your mother than most girls your age.

We're seeing more signs of Janey growing up lately, and we are realizing more than ever how much she understands without being able to fully show her understanding.  In the last month, Tony and I have both noticed how much she monitors everything we say, especially actually when the conversation is not directed at her.  She is quite an eavesdropper.  We can be chatting away, and somehow say something about going someplace, and she is instantly next to us, saying "Shoes on!  Go for a car ride!"  Or we are talking about food, and she runs over and adds her two cents worth---"Go to the store.  I want salami"  or "Pizza!  I want pizza!"

It's hard, because much more than actual words, Janey picks up on tone and mood. Contrary to many beliefs about autism, Janey is better at sensing moods and tone of voice than anyone I know.  The slightest hint of argument or sadness or even when we take a serious tone in a conversation gets her very upset.  And the opposite works---if she's upset, we can sometimes make her happy by talking to each other in an upbeat way and laughing (but it has to be sincere laughter---she knows the difference)

It can be easy, even for parents like us with quite a few years now of autism parenting experience, to fall back on some of the silver lining thinking about autism, thinking things like "At least she's always be our little girl!  At least she's spared from adult worries!  At least she doesn't want to purposely make us upset!"  But thoughts like that aren't fair to Janey.  They make her less than---less than a full, complex person.  We need to always keep in mind Janey's age.  She is growing up.  She's going to be angry at us, sometimes.  She is growing in understanding, even if we don't always see the growth day by day.  We need to adjust our thinking, to treat her with respect, and yes, to teach her to treat others with respect.  It's not always going to be easy, but not much about this whole gig is. Nothing worth doing usually is.

Winter

When I was little, I used to feel upset when people would say February was their least favorite month, because my birthday was in February, and it somehow felt like a personal insult.  Well, I'm finally forced to admit I'm not too big on February myself.  I haven't written for a while.  I've been feeling blue, and winter feels long.

I am sure it's not politically correct to say so, that it's one of those things I'm not supposed to admit, but sometimes, the unchanging nature of life with Janey gets to me.  Her progress lately, if there is any, is very, very slow.  Sometimes it halts altogether, or moves backwards for a while.  With typically developing kids, the changes in their interests or hobbies or friends or activities can move at a pace so fast it's hard to keep up with.  With Janey, that isn't the case.  She watches the same videos, over and over and over, that she did five years ago.  She doesn't have friends.  She doesn't partake in any outside the home activities.  Every day feels a lot like the day before. And of course, much of that is on me.  I should somehow make her life more varied.  But I am not sure how.  It's not like there is a huge list of possible classes or lessons or clubs waiting for her to join, or friends calling to get together with her.  She goes to school and she comes home.

As people have said to me often, it's very possible Janey doesn't crave variety in her life the way others might.  She might be very content with things staying the same, and indeed I think that might be the case. But as this winter wears on, I'm feeling---I'm not sure.  Restless.  Worried.

In the background of all this is the tense feeling political news, the uneasy national mood.  It used to be that the internet provided much of what I needed to keep feeling connected to the outside world.  But lately, it's hard to get online without feeling bombarded with strident differing views of every topic.  I rethink every comment I might have---is this going to set someone off?  I think of myself as mainly apolitical.  What bothers me is not so much any actual players or issues in the political scene, but the tone of the whole debate.  It feels like a "gotcha" kind of game, like an argument that can only be won by being fierce, or angry, or hyper-alert.  And where does that leave someone like Janey?  Where is the caring for those not armed for such a battle?  I had a strange dream the other night, a dream we were somehow at war and Janey had been drafted to fight. I screamed out to whoever was in charge "What kind of world is it when you expect someone like Janey to be part of warfare?"  And that is it.  It feels like there is little place for those who are dependent on others, who can't get out and fight for their rights.

So...we keep on.  We do our best, all of us out there living this life, to give our kids the best life we can.  Janey will come home from school.  I'll ask her about her day, as I have so many hundreds of times.  She won't answer.  I'll try to get her to use the bathroom.  She won't.  I'll end up changing her clothes and her bedding.  She will ask for cheese, for chips, for salami.  I will have them or I won't, she will eat them or she will scream.  She will want a shower, and she will ask to get out of it when she really means she wants the water adjusted.  She will ask to watch Kipper, and then I'll put on the wrong episode and she'll scream.  She will ask for a car ride.  I'll tell her Daddy will be home soon and maybe they will take a ride. I will hug her and tell her I love her.  She will laugh and hug me back, and we will get through another day.  And that is how the years will go on.

Screaming

The scream.  It's incredibly loud, and incredibly sad.  It's a scream of despair, of extreme pain, of furious anger.  It will literally hurt your ears, wake you from a dead sleep, startle you into jumping.

Sometimes, it's in response to a request that can't be instantly filled.  Last night..."I want salami!"  I told Janey we were out of salami, and there it was, the scream.  Sometimes, it's during a video Janey has been watching happily for years.  Little Bear has the mildest of mild arguments with Cat?  Scream.  Sometimes, it's out of absolutely no-where we can see.

If the scream made Janey feel better, if the scream seemed to be an effective means of communication, if the scream was a sensory thing that let out steam---I would not try to find ways to stop it.  It would still restrict us from going places, it would still make it sound like Janey was being tortured, but I would accept it.  But the scream doesn't seem to help anyone, especially Janey.  It's almost always accompanied by arm biting---deep biting of Janey's right arm.  The arm has permanent bite marks.  Sometimes, after the biting, Janey says "My arm is hurty!" with tears in her eyes.  The biting, like the screaming, does not seem like a choice.  I am quite sure Janey doesn't want to scream, or to bite her arm.

What do I do about the screaming?  I don't know.  I have tried literally everything I can think of.  Nothing has worked.  We have tried ignoring, we have tried responding to what we can guess is the cause, we have tried a certain place in the house to go to scream, we have tried just hugging her when she screams, we have tried explaining calmly to her that we don't know why she is screaming and we would like her to tell us in words what is wrong.  Nothing seems to help.  When Janey is in a good mood, she doesn't scream.  When she's in a mildly upset mood, she screams at times.  When she is in one of her very, very bad moods, she screams most of the day.

I would do almost anything to help Janey feel better, to make her not need to scream and bite herself.  I would give her my voice, like The Little Mermaid movie she loves.  I would subtract twenty years from my life, as is said in "At This Moment", one of Janey's favorite songs.  I would give up everything I enjoy.  I would pretty much give my life.  That is how much I wish Janey was happier, how much I wish she didn't feel the despair that leads her to scream and to hurt herself.

When it comes to the scream, all the autism philosophies, all the methods of teaching, all the labels and interventions and behavior plans and ideas, all my sanity, they all go out the window.  All I can feel is sadness, sadness that my daughter I love more than anything is feeling the kind of pain that causes a scream like that, a self-injurious bite like that.  This is not something that can be sanitized, can be made part of anyone's agenda.  This is the horror of the child you love needing help you just can't give.  I'm sorry, Janey.

Bread and Salami

I read a book recently called "My Baby Rides the Short Bus".  It was a collection of essays about raising children with various special needs, although most of the kids had autism.  It triggered a lot of thinking for me, and went along with something that had been brewing in my head.

Going back a bit...In general, Janey has been much happier this week.  The medication seems to be helping, and I hope some of the new things I'm trying are helping too, like the positive reinforcement to the extreme.  Whatever it is, I am VERY happy about it.  But realistic, too.  She often has honeymoon periods on a new medication, or a new dose, or a new classroom, or anything new.  Eventually, her moods cycle around again.  But I have to enjoy right now while I can.

I wrote earlier about Tony trying to take Janey to the store and her freaking out and screaming and him having to leave with her.  When that happened, he was buying her some salami, her favorite food right now.  For the next few days, she asked for salami over and over and over, and I told her each time "We don't have any salami.  Remember at the store when you screamed?  We had to leave before we got salami.  Next time, when you don't scream, we will get salami"

A few days ago, Janey and I went to get William from work at Whole Foods.  We left a bit early, and I decided to try a quick shop with her.  She was excited.  First, she went to the area where the VERY expensive salami is, the kind I think they must fly over on its own plane from Italy every morning to justify the cost.  Luckily, that isn't the kind she likes best now.  We found the moderately extremely expensive salami aisle and got a few packs.  They are organic, uncured, no nitrates, that kind of stuff, but she just likes them because they really do taste great.  Then, we went to look for the bread she likes, a very long thin loaf with sesame seeds that is also very, very expensive (they don't call it Whole Paycheck for nothing)

When Janey spotted the bread, she dashed over to get it.  The look on her face was amazing.  It was pure joy.  She grabbed a loaf and put it in the carriage, and looked up at me with that look---the look that seems to say "Life is absolutely perfect!  I could not possibly be happier!"

Later, reflecting on that moment, I had a thought I've had a few times before.  I thought about how once in a while, Janey's autism gives us moments that we would not get with a typical kid, moments that are wonderful.  And then, because my default emotion is always guilt, I told myself "But what cost to her do those moments come at?  Should I really feel happy about moments like that when they come at the cost of so much to her?  Should I be overwhelmed with happiness that she can have pure joy over getting the bread she loves?"

And I decided---yes, I can feel happy about those moments.  They are part of Janey.  It isn't fake joy she feels.  It's real joy.  And her ability to feel joy like that is something that can only be a good thing.  The fact she isn't thinking at that moment the things most 10 year olds would be thinking,  thinking about how her mother is embarrassing her, or about what other treats she might get, or about all the many things I would have been thinking at age 10-- that doesn't matter. What matters is she has a chance to feel the moments of extreme happiness in life we all deserve.  And I rejoice in seeing her feel that happiness.

This comes back to the book I read in that I noticed that many of the most heartbreaking essays there were written by people whose kids are right at the edge of "typical", "normal" They were about kids desperate to fit in but never quite able to, kids struggling to do work at school they never quite can do, or struggling to make friends or socialize.  They were about children feeling left out and sad and feeling like they were not making the grade.

Of course, I wish so much it's hard to express that Janey was going to have a life closer to the typical life.  I wish she could learn to read, that she could get married some day, that she could have friends she could hang out with, that she could have all the things in life so many of us take for granted.  But she can't.  However, she doesn't seem to wish those things.  She isn't really at the point where she realizes what she doesn't have or won't have.  I don't know if she ever will.  Not that life balances things out---as we all learn as kids, life isn't fair.  But I am glad, in a way, she will be spared the heartbreak some of the children in the book felt.  And I am glad she can feel joy at times.  Especially after her terrifying health setback, I am so glad I was able to see that amazing smile and joy over a loaf of bread.  I will unabashedly, unapologetically treasure that moment.