When Mama Gets Sick

I don't get seriously sick a lot.  I better knock on wood when saying that, as that is what I used to say about Janey.  This winter hasn't been an easy one health-wise, and last week it was my turn.  Starting about last Sunday night, I had a fever that got progressively worse, lots of coughing and all out body aches.  On Wednesday I finally gave in and went to the doctor (thank you, Maryellen, for getting me there, literally and figuratively!) and a chest x-ray showed I had pneumonia.  The doctor was quite sure I also had the flu, but because of my probable Sjogren's Syndrome, he wasn't able to get a swab for that.  Either way, I was pretty ill.  He gave me antibiotics and said to stay home and stay resting for at least 5 days, although I'd probably be tired and recovering well past that.

Today's been 5 days, and I do feel much, much better.  Still very tired, and doing any little thing makes me need to take a nap, but so much better that is makes it almost worth being sick, to remember how good well feels.

The big, huge thank you here goes to Tony, for taking over all of my Janey duties.  Being sick in bed with a child like Janey in the house is not easy.  Last Monday, before we realized how sick I was, I got Janey off the bus, around 3, and took care of her until 4:30 when Tony got home.  That hour and a half was about enough to do me in.  It made me realize what a house of cards we live in.  Janey needs full time supervision, every second, still now, even though it's easier than it was a few years ago.  But with me barely able to move, she made a wreck of the kitchen getting some of her favorite unconventional snacks---things like ketchup and romano cheese and duck sauce.  She came off the bus wet, which isn't common, so I changed her, which took almost all I had.  Then within a few minutes she was wet again---another change.  Then she had a toileting accident of the other kind---lots of cleaning up.  I felt like I was going to collapse, and I did, when Tony got home.

The rest of the week, Tony just took over.  He got her on the bus in the morning, which involves dressing her, giving her medication, brushing her hair and teeth, getting her something to eat (they have breakfast at school, but we always feed her at home too as she doesn't eat well at school), making sure her backpack is set, waiting for the bus with her---all that while he was getting ready for work himself.  Then he came home early each day to get her back off the bus, took care of all her afternoon and evening needs, made supper for her and us...did it all.

My thought all week was how much I admire single parents of kids like Janey.  I won't say what I've sworn never to say---"I don't know how you do it"---but I will say you are incredible for doing it.  And that I hope you get support, and I wish I had millions of dollars to help you, or at least time to give you respite.  Parenting kids like Janey is at least a two person job.

How did Janey take my illness?  Quite well, actually.  One thing that was kind of neat is I got a little of the Daddy treatment.  Seeing me, after Tony got her off the bus and fed her and so on, seemed like a huge treat for her.  I haven't really gotten that in the past.  She came into the bedroom and had a huge smile on her face, and gave me a big, big hug.  She was excited when I could haul myself over to snuggle with her on her bed.  She was actually a sweetheart all week.  If it had been a tougher week for her, as so many weeks are...well, I'm glad it wasn't.

I've got to sort out in my mind some realizations from this week.  Mostly, I have to think about how easily everything could fall apart.  If either Tony or I started to become more disabled from the health issues we already have, it's hard to picture how we would be able to take care of Janey.  And the truth is, we will, at some point.  Even without our on-going health issues, we are getting older.  But as we've found so often, there's not a lot out there to help.  We are grateful, as we always are, for her school.  Tony couldn't have worked at all last week without school.  I think next year I have to bite the bullet and find some kind of afterschool that works, if possible.  And we have to start looking for that needle in a haystack, perhaps---some way to get Janey more care when she is an adult and we are...older too.

For now, I'm just happy to be on the mend.  I will be glad when this winter is over!

Night Note

It's about 1:30 in the morning.  Janey is awake.  Not an uncommon story.  Some nights, she sleeps, some nights, she doesn't.  Nothing much seems to determine which.  When she doesn't, of course we don't.  Of all the things that are hard about raising Janey, the sleep, or lack thereof, is one of the hardest.

What to say about Janey's sleep?  I can't be too profound, because my eyes keep closing.  I can say it's one of the hugest reasons I am glad I am married, because we can trade off in the night.  If I were a single parent, I have no idea how I'd even live.  If you know a single parent with an autistic child that doesn't sleep, do anything in your power to help them.  If you ARE a single parent with an autistic child that doesn't sleep, I wish I could help you.

Why does Janey sleep so poorly sometimes?  I don't know.  I can say until she was about seven or so, it wasn't as tough.  Sleep was one of the easier areas with her.  But something changed in the last few years.  Maybe she is more aware of the world around her, and when she wakes in the night, she wants to interact with that world.  Maybe it has to do with lights.  Janey turns on all the lights in the house when she wakes up.  When William was home, she woke him up every night by doing this, and I've been startled many times by lights suddenly going on.  Maybe it's her lack of being toilet trained---when her pull-up is wet, it wakes her up.  But most likely, it's just a part of whatever in her brain is different.

Not much seems to work with the sleep.  We have started giving her melatonin, after finally finding a kind that dissolved (we have to dissolve all her medication in water), but I can't say as it's done a thing.  The medication she takes at nighttime makes most kids sleepy, and it might help her get to sleep initially, which is not her problem, but it doesn't keep her asleep in the night.  Reasoning with her works as well in the night as it does in the daytime, which is to say not at all.  We can't leave her alone to play when she's asleep, any more than we can ever leave her alone for a second when she is awake.  As much as I wish there was a solution that would work, I don't think there is.

At least tonight she is happy.  When she is awake in the night and screaming, that is pure, pure torture.  Tonight, she happily asks for things---TV, snacks, books, songs.  Right now she is singing "Alloutte" at the top of her lungs, and saying hopefully to us "Want to sing that song called Allouette?"  Well, Janey, frankly, not right now.

Sometimes, during these middle of the night awake sessions, I wish there was no such thing as day or night---I wish that it wasn't conventional to be awake in the daytime, and I could just be up with Janey when she is up and sleep when she sleeps.  I do that, when I can, but in the real world, the days include obligations and work and driving Janey places and living a life.  But I guess this is living a life too---this is the life I've been given, and the life that Janey has, day or night.  And no matter how long the night is, eventually it's morning, and we start it all over again.

The storm and the screaming

We are in the middle of what the weather people keep reminding us is an historic storm here in the Boston area.  I was skeptical, but yes indeed, it's pretty bad looking out there, and they keep saying it's going to get a lot worse.  Driving has been banned, and it's a little cool looking at the major road we live on almost empty---like a tiny taste of living on a back road for just tonight.  I'm able to enjoy the view and the storm because Tony made it home.  He was away all week, and had to fly back into Boston today, which was a very, very iffy proposition.  He got an earlier flight than he planned, and made it home around 1 pm.  I was thrilled to see him.  Janey didn't have an extra bad week, but being a single parent even for a week of the three kids---it's more than I can do.  Or I shouldn't say that, because if I had to do it, I'd do it.  I'm being just like the "I don't know how you do it" people.  But I'm glad I don't have to do it.  It's very hard.  I don't get a break in the night when she wakes, I don't have some to ask to watch her for a while so I can rest or work, I don't have someone to laugh instead of cry with, I don't have a co-worker in the incredibly tough job that is Janey parenting.

Janey missed Tony.  It's hard to say how she feels, exactly, about him being gone, but I tried to prepare her, and then, throughout the week, remind her as I picked her up at school that he was "gone on an airplane trip, but Daddy will come back"  I made up a few songs, and repeated the basic message as much as I could---Daddy is gone for a while, but he will come back.  Today, when I knew he'd be home in just a few minutes, I told her "Guess who is coming home from their airplane trip?" and she said "Is it Daddy?"  I was thrilled with that.  I haven't heard her ask that kind of question before.

She was very happy to see Daddy, but within a few hours was screaming more than she had for a while.  I'm guessing it's a few things combined.  The weather is weird, and she must see that.  She was excited to the point of overexcited to be with Tony, and that can turn fairly quickly into overwhelmed screaming with her.  She also probably expected them to go out someplace right away, as they often do---an exciting trip to the store or something---and we are banned by law from going anyplace right now!  A little part of it might have had nothing to do with Tony.  She was playing for the first time in a while with the talking robot doll I got her for Christmas, and the doll, Serefina, says "If you're there, SAY SOMETHING!" which she kept repeating.  I asked her if that was scaring her, and told her we could put the doll away, and it might have been coincidence, but that seemed to calm her down.  I don't know if she totally gets that the doll isn't alive, and by coincidence, she's been watching Toy Story lately, which could possible put the idea of living toys in her head.  Who knows?  It's like a complex guessing game or mystery figuring out what is in her head, and one that has no answer key, so I never know for sure if I get it right.

We'll be riding out the storm for a few days here.  I hope we get through it without too much insanity.  I'm very thankful we're all together and warm and have enough food to last us.  Hope anyone else in the path of this winter monster does too!