Saturday, June 20, 2015

How is Janey doing?

A lot of people have been asking me that question---how is Janey doing at home?  How is her recovery?

Well, it's slow but steady.  She is eating much better than she was, is drinking a good amount, her digestive system seems to be working well based on pullups, she doesn't seem to be in pain most of the time.  She hasn't had any fevers or signs of infection.  Those are all good things!

However, she is still what the surgeon told us to expect, "debilitated".  At the time, it struck me as an unusual word to use.  It sounded more severe than anything I pictured.  But it's actually a very accurate word.  Janey really is debilitated.  She still needs a huge amount of rest.  She spends a lot of the day lying down in bed.  She gets very tired after walking.  She walks hunched over most of the time.  She looks thin and pale.  She looks like what she is, someone who was seriously ill and in the hospital for a long time.

We are taking her out a little at a time.  This afternoon, we took her along when taking her brother William to work at Whole Foods, and took her in the store for a few minutes.  She usually likes Whole Foods a lot, but this time, she got extremely worn out quickly.  I wound up taking her back to the car while Tony checked out.  It's probably lucky that I've gotten used to getting stares over the years due to Janey's behavior, as we got stares.  Not because of her behavior, which was very quiet, but because of the careful and hunched way she was walking, and the fact we had to stop and rest a few times on the way to the car.  They are different kinds of stares than I am used to.  The behavior stares are more curious, more stealthy and sometimes a bit judgey.  These stares look concerned, unsettled.  I don't like either kind much, but I can understand these a bit.

Janey's behavior?  It is not back to normal, but there are shades of it.  She gets very upset when we tell her no, which we are not having to do a lot of---she isn't asking for much.  But when we have to say no, she screams quickly and loudly, intensely, and then it's over, like she knows she won't have the energy to cry for long.  She is biting her arm when she's upset, but she hasn't been aggressive to others at all lately, save one slap to my face a few days ago.  Mostly, she's like a tired version of her old self.  There is no jumping up and down, no running around, no climbing things to get what she wants.  She is watching a great deal of YouTube on her iPad, like in the hospital.

An interesting thing I've noticed is that Janey seems to appreciate little things I don't think she ever noticed much before.  When we first got home, and she was on her own bed, with her own blankets, she smiled the hugest smile you can imagine.  We were all gathered around, and it was a wonderful moment.  I can imagine that despite us trying to explain otherwise to her, she might have not been sure if she had permanently moved to the hospital, and she seemed thrilled that was not the case.  When she asks me to lie with her on the bed, and I do, she has been smiling at me with the sweetest, most loving smile I've ever seen.  She often wanted me to lie with her in the hospital, and there just wasn't room, and I think she loves it than now we can do that.

I can't imagine what has gone on in Janey's mind about this whole ordeal.  I've tried to explain it to her, and she can say "appendix", but I don't think she understands much at all.  To her, it must have felt like some odd kind of arbitrary torture at times.  I keep thinking of the times when she couldn't have anything by mouth, even water.  She would ask over and over and over "Water?  Water, please!  Water!" and we would have to say no.  It killed me to say no to that---one of the basic things a mother does for a child.  I am sure she had no idea why she suddenly had to be thirsty.  Then, when she wasn't drinking enough, we kept urging water on her, and she didn't want it.  She must have thought we'd gone some strange kind of crazy, or become suddenly cruel.  It is so hard to think about that.

I hope Janey is well enough to go to summer school when it starts.  I think she will be.  It's a slow road, though, and it's made harder by her autism.  I can't explain why she needs to try to stand up straight, or why her stomach might still feel weird, or why in fact any of the past month has happened.  But she is a strong girl, and I know there will be a day when this is completely behind us.  I am looking forward to that day.

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