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.

The start of the next part

Since I last wrote, a big change took place in our lives.  Tony retired from work, 30 years to the day after starting federal employment.  He is 56, so this is a fairly early retirement.  Having him retire early was a huge decision, mostly for financial reasons, but it was the right decision, I am quite certain.

On the day Tony retired, a thought kept running through my head---"The hardest part is over now".  That's where the title of this post comes from.  Of course, I knocked on wood, and of course I know that there are still going to be many tough parts of life.  But from now on, there are two of us to care for Janey.

The smile of a man 5 minutes into retirement!

About a week after Tony retired, I looked at him and realized he truly looked about 10 years younger than he had for the past few years.  Mothers get all the glory and sympathy often in this special needs parenting game, but it's hard to overstate all Tony has done over the years.  Especially the past few years, he was working a job that was extremely stressful.  He woke very early every morning, helped me get Janey off to school, went to work all day, came home, took over with Janey usually, took her for car rides and made her supper, then had to go to bed when she did so he could get up and do it all over again.  He often went days without any time to himself, save maybe his time on the train.  He did all this while dealing with a serious health condition (severe type 2 diabetes---he's been insulin dependent for many years).  Tony's brother lives upstairs from us and is increasingly disabled from the complications of diabetes also, and Tony helps him a lot too.  When Janey didn't sleep, often Tony didn't sleep, and there were so many days I simply didn't even know how he got through the day.

Financially, retiring this early is not going to be a piece of cake, but that isn't something we find nearly as important as our health and happiness.  As long as we can eat, have health care and have a roof over our heads, the rest is gravy.

I've often thought of how in cartoons, characters run off cliffs, but keep going along just fine until they realize they have gone off the cliff.  That's how a lot of our life the past few years has felt.  Not everything is within the scope of what I write about here, but suffice to say we've been running on fumes a lot of the time.  Despite Janey being our joy, our delight, despite her being far happier than she was during some darker years for her, the demands of special needs parenting are always there.  That is something it can be hard to explain to those who haven't lived the life, and can be seen as a complaint, as something I shouldn't mention because I should only emphasize the joy.  But I want to speak the truth here, and the truth is that it's hard.  It's very hard.  It's very hard having a child that will never, ever care for herself, that needs supervision that realistically only we as parents can safely provide when she is not in school, 24 hour, 7 day a week supervision, and that this will be forever.  I know my dying thought will be of Janey, of her happiness and safety.

And so we start the next part.  The next part has been good, so far.  It's the little things that are the most surprisingly special.  On the 2nd day Tony was home, after Janey went to school, after a long night when she didn't sleep well, we went back to sleep after she got on the bus.  We slept in until 10.  We woke up astonished.  It was the first time ever we have slept in together.  Ever.  Last night, we stayed up to see our beloved Red Sox win the World Series.  We didn't have to think for one minute that we should be getting to sleep.  We knew we could rest a bit today.  Those kind of moments are worth the change in income.  They are the kind of special small things I think our new life will include a lot of. 

And most importantly than anything, it's wonderful to see the joy having Tony home gives Janey.  Afternoons when she got off the bus were always a very tough time.  Now, Daddy greets her, and right away cooks her whatever she wants to eat.  Together, they blissfully eat things I wouldn't touch---fried eggplant, steamed greens, tuna salad---and Janey dances around with happiness. 

Here's to you, Tony.  We made it to the next part.

The power of what we do and don't talk about

Yesterday was our 26th wedding anniversary.  As happens on days like that, Tony and I were reflecting on our past, and especially on my pregnancy with my first child, William. 

Then in the early 90s even more than now, it seemed like pregnancy complications were something not to be talked about.  It was the heyday of "What to Expect When You're Expecting", a book that seemed determined to let you know that everything you were experiencing was just fine, perfectly normal.  There were a few small pages only about what can actually go wrong, and they were presented as something you probably didn't even need to know about, something you certainly shouldn't dwell on.  And so when my pregnancy felt different than what I read about or saw around me, I figured I was just being paranoid. 

I wasn't, and William was born at 7 months by emergency C-section because my pre-eclampsia had progressed to life-threatening levels.  It turned out, in my family anyway, that wasn't that uncommon.  On my father's side in particular, pre-eclampsia turned up often, with the strongest example being my great-grandmother, who died of eclampsia, seizures, a few days after my grandmother was born.  A few months after William's birth, the TV series ER had an episode called "Love's Labor Lost", in which a mother dies from complications of pre-eclampsia.  I wish I'd seen it sooner, although it was the hardest thing to watch I've ever seen.

A scene from ER's "Love's Labor Lost"

Of course, there are reasons we don't talk about everything in our lives publicly.  There is much in all our lives, including mine, that we don't share.  The reasons are many, and sharing or not is a choice we have a right to make, and sometimes an obligation to make.

However, at times, sharing can be life saving, or soul saving.  My life, and William's, were in the balance around the time of his birth.  I wish I had known what I know now about how suddenly and drastically pregnancy can take a turn.  And when it comes to my life with Janey---if I hadn't found the people I have, through this blog, mainly, I don't know if I would be here today.  There were days, and nights, that were only survivable by knowing that others had lived this life and gone on to a place of calm, even happiness.  And what keeps me writing today is those letters I've gotten from others with girls like Janey telling me how knowing they weren't alone kept them going.

Something I try to always keep in mind, though, is that there is much we don't know about the lives of others.  We don't always know what others are struggling with, what health issues or family issues or any other issues are affecting their lives.  There are many things we don't share, or aren't ready to share.  There are many times we are the ones depending on others who ARE ready, who DO share, whose stories we cling to as we struggle with what we ourselves are not yet, or ever, sharing.  Help comes in many forms---both in how we give and how we get help.

I want to thank those who have made me know I'm not alone, over the years---both those who shared their life experiences and those who didn't, but used them to become comforters and helpers of others.  May none of us ever feel truly alone.

Sickness and good news

Tony keeping Janey entertained as we wait for the orthopedist

First, the good news!  We took Janey to her appointment with the orthopedics department at Mass General.  They said she does have scoliosis, but it's mild enough that we can just wait and see for now.  They said more than a 10% degree of curve means you have it, but it's only at 25% that they start doing bracing.  She's at 12-15% right now.  So we go back in 3 months, and hopefully, things will stay as they are or get better.

Janey was out sick on Monday and Tuesday from school.  She had a cough and cold, nothing severe, but enough to keep her home.  She rarely gets sick.  Of course, she had the Big Sick with the burst appendix last spring, but her staying home for a little sick day has hardly ever happened.  She was in a pretty good mood, and we had a couple of quiet days at home (except for the appointment!)  By Tuesday afternoon, she felt a lot better and was restless.  It seemed like one of the first times I've seen Janey bored, although she doesn't have the words to say that.  But she kept coming up with ideas---"go outside to see Daddy!"  "go for a walk!"  "take a shower!"  She wanted to see Daddy when it was hours from the time he comes home, but we did take a little walk in the bizarrely warm December weather, and she had two showers.

Today was back to school, but the bus never showed up.  Tony had told the driver she'd be out until Wednesday, and the driver said "Okay, see you Wednesday", but somehow, no-one showed up today.  We've had a great driver this year, so we were surprised.  Janey was not happy.  She kept saying "Want to go on the bus?  Want to go on the bus?"  Finally I came inside and checked the GPS tracking, and saw the bus was at her school.  I had already tried calling the hotline for buses, and h ad been on hold for about half an hour, so I called the school, but was told I'd just have to call the hotline.  I then called her teacher, and asked if somehow a message could go to the driver that we hoped tomorrow he'd pick her up.  I called the hotline again, and this time got someone, who said basically "Oh,  yeah, they didn't get her.  I don't know why"  Very helpful.  So I drove her to school, although now the illness had hit me and I had been up most of the night with a sore throat.  Complain, complain, I know!  Janey did well with the change of routine, and it was nice to get to see her teacher and an administrator of her program I've known for a long time who had been out on maternity leave.

I asked on the Facebook group page about other girls with autism and sickness.  It seemed like a mix---some girls get sick a fair amount, but others are like Janey and rarely get sick.  The ones that rarely get sick seem to have a very high pain tolerance, as I think Janey does.  I've seen that pattern with a lot I've read about autism---either a child is sick all the time or hardly ever sick.  I think personally it has to do with autoimmune issues, which is my working theory as to what probably caused Janey's autism.  I think she has an autoimmune system on high alert all the time, so much so that minor illnesses never see the light of day, and that at some point, this affected her brain.  But I am no doctor, and I don't believe in any one cause of autism.  I think that's the case in Janey's particular situation because our family is riddled with autoimmune disorders.  Almost everyone on either side of the family has at least one---diabetes, asthma, Raynaud's Disease, thyroid cancer ---and I have been suspected of having several---Sjogren's Syndrome and early stage scleroderma, in addition to whatever stopped my thyroid from working.  So Janey would come by it naturally.

In speaking of sickness, I do worry about what would happen if I ever became chronically ill, from an autoimmune syndrome or something else.  I don't think I will, but if I did, or if Tony's diabetes became worse...that's a scary thought.  Janey has no understanding of anyone else's illness.  She counts on us being healthy and able to help her.  It's part of a house of cards situation.  If either of us weren't able to care for her, I just don't know how it would work out.  We deal with that worry by just hoping it doesn't happen.  When Janey gets off the bus in a little bit, my sore throat and low fever and aches just need to go to the background.  There's no other choice.  And of course, somewhere in my mind is always the thought that someday, Tony and I will be gone.  That is the black hole of thought, where I just can't go.  What happens then?  To keep living our daily life, we have to put aside some thoughts and just keep on keeping on.

So---I'm off to have some tea and Motrin and await my sweetheart's arrival home.

Thoughts after a long and strange vacation week

Winter vacation week is over, and for Janey, it went quite well.  This is the vacation that is often the stuff of nightmares, being situated in the middle of winter with little to do outside the house, but this time, Tony took the whole week off, William was home from college, and Janey got a huge amount of attention from them and from Freddy, and overall, she was happy.  We noticed by the end of the week, she was talking more than usual, something I've noticed happens after she is around us 24/7 for a while.  She showed also a new behavior---getting very mad over specific things.  She certainly has gotten mad and upset PLENTY before, but this mad was different.  For example, at one point Freddy and I were watching a Star Trek The Next Generation episode, and Janey wanted to watch Kipper "on the big TV"  Tony offered it on the computer, but she didn't like that idea, and she threw a fit, screaming "I WANT KIPPER!  ON THE BIG TV!  ON THE BLACK TV!"  She stomped her feet and overturned a toy box.  We didn't give in, but were able to talk her down much more easily than times when we had no idea what she was upset about!  It looked like a 2 year old tantrum, and it was actually quite nice to see, in a way.

The big event of the vacation, for me, was a horrible medical test.  A little back story...About 18 months ago, my doctor ordered a bunch of blood tests.  This was because at several points, I've had quite abnormal liver tests (with normal tests between the abnormal ones).  I'm quite sure something happened to my liver both when pregnant with William (because of severe preeclampsia) and when I had a terrible reaction to Aldomet when pregnant with Janey.  But to assure I was okay, the doctor wanted more testing done.  This turned up some weird results, the biggest of which was a marker for scleroderma, a marker that is almost always accurate.  This led to seeing a rheumatologist, which in turn led to seeing about a million other specialists, which lead to about a million other tests.  As is usually the case with me, I got some bizarre results, but overall, nothing definitively wrong.  I was diagnosed with an "undifferentiated connective tissue disorder" and "possible Sjogren's syndrome" and "maybe future Scleroderma"  All of which means little.  However, in the course of all this, at some point it was noted I get short of breath a lot.  I had written this off as being out of shape, but the pulmonologist wanted me to see a specialist in pulmonary hypertension.  I did, and that doctor said I needed a right heart catherization with a combined exercise test.  I balked at this, but he said I was "the strongest possible candidate for the test he's ever seen".  An in office test showed I probably had PH---which is a very scary and usually fatal diagnosis.  So---I agreed to the test.

To end the suspense, the test was perfectly normal.  I am fine.  However, the test itself was HELL.  I was told it's usually no worse than a dentist's visit.  Well, if that is the case, the dentists must be like the one in "Little Shop of Horrors", the sadist dentist played by Steve Martin.  It turned out that I have arteries that don't like things poked into them.  In trying to get a port into my left wrist, the first doctor failed, the second doctor failed, the third big gun doctor they called in failed.  So after 75 minutes and FIFTEEN attempts, they switched to the right wrist.  At the same time, they were working on getting a probe into my heart through my neck.  This took about 7 attempts, a broken wire, a few "Oh s**t"s from the doctor, questions about whether I've had heart surgery (no, I haven't), etc.

I came home from the test feeling awful, and I kept feeling worse all week.  Eventually, by Saturday, although I had vowed to never visit a doctor again, it was pretty obvious even to me my wrists were infected.  I had a fever, and they had spreading redness.  So another doctor's visit, and only some quick talking on my part let me "try" having antibiotics instead of going back to the hospital.  They seem to be working, and hopefully, it's all over but the huge bills I'm sure I will get.

So that's a long story that in the end is fine.  The other thing I heard about on Saturday doesn't have any happy ending.  A dear friend's nephew was killed in a car crash last Friday, driving to work, seat belt on, slipped on snowy unsalted roads into the path of a truck.  He was 20 years old, married with a daughter, and a son on the way.  Gone in a random, horrible flash.  I didn't know the nephew at all, but that's not the point.  It was the ultimate and saddest example of random I can think of.  Nobody was doing anything wrong, but still---things happen.  Tragic things.

My mind has been working on all of this, and of course there is no neat conclusion.  But my thoughts have been along these lines---We try all our lives to control outcomes, to predict problems, to make sure we are healthy and safe.  And we can't.  The tests were all well meant for me, but they were not really any use, and in fact they caused me some harm.  The man killed was doing all the things a young husband and father should do, but he still was killed.

How does this relate to Janey?  Well, it made me think that the future is far from assured for any of us.  And for Janey, the present is what she really has.  She doesn't, as far as I can tell, anticipate the future.  She lives in the now.  And when I am making decisions about her future, I am going to use how it will affect her Nows.  I don't mean I will not do the basic things we all need to do for health and safety, but I am not going to make big changes in her life in hope of some vague future benefit.  She adores the school she is in now---I will leave her at that school.  She was very unhappy last year at summer school---I am not sending her this year.  We will work on giving her happiness.  We can't predict the future.  We can't prevent, in any big way, the events the future has in store for us.  I will try to not dread the future, Janey's future or mine.  I will work on every day we are given being the best day it can be.  I know I'll be tested in this, and I know I won't live up to that goal, but I am going to try.

Completely weird and out of the blue

Every once in a long time, Janey comes out with something that we have no idea where she got. It doesn't happen a lot, and when it does, it's so odd and out of the blue it doesn't seem real. Today was one of those times. Janey was being a little fussy in the kitchen, next to Tony, and I was in the next room. All of a sudden, she yelled out "I don't want to die!" As we were recovering from that, she said "I don't want Mama to die!" We stood there staring at her, stunned.

I can't remember talking about death in front of her. I don't think she has seen any TV or videos that address death. I had no idea it was a concept she had any, any idea about.

We immediately reassured her, of course. "You aren't going to die. Mama isn't going to die. Daddy and William and Freddy aren't going to die". She stayed on the subject a while, saying "I don't want Freddy to die! I am NOT going to die" I took her to see sleeping Freddy, and awake William, to see they were alive and well. She seems okay now, and hasn't said anything more.

But why? I do remember that both boys had a period of time around when they were eight that they worried about me dying. They said if they were at school and anyone came to the classroom and told something privately to the teacher, they were sure the teacher was being told I was dead. That was a little tough to deal with, but they got over it, and I think maybe it's something that around 8 becomes a worry. But Janey is in no way developmentally eight. She rarely says complete original sentences like that at all. If she does, we can usually figure out where they came from, and they are reworkings of sentences she has heard. But this? Unless there is some very odd stuff being taught at school I'm not aware of, which I seriously doubt, she has not heard much about death.

It's this kind of thing that makes autism so mysterious and hard to figure out. It's these weird little oddities of Janey that keep us guessing. I think I have her figured out, her abilities and moods and worries, and then I find I don't.

So I'll just keep reassuring her that none of us are dying soon. And I'll keep trying to figure out my little girl.