Last Day of Autumn…

Winter does not officially begin until tomorrow.  All this cold weather has been a tease, a come hither look from Mother Nature.  My bones and joints don’t appreciate it, but there it is…unless we move to a tropical climate, this is now the story of my life.

The first seven days of Christmas have been a success.  We have enjoyed the quiet pace, the relaxed mood, the adding tracks to the set-up in the Christmas village inside the tent…and trees…and assorted Lego concoctions that give interest and texture to the whole shebang.  J is happy.  Every time I bring another thing to put in there, he cranes his neck and, from the safe perch of his couch, gives instructions on what to do next.  Passenger cars have been added to the train, a rather large tree sits in the middle with lights rising up from the base and getting lost in the “sky.”  Five minutes sitting on the floor looking at all we have put in there are guaranteed to make you happy…

On Thursday, the 22nd, we will make the pilgrimage to the movies.  Our schedule for the week is thrown off because of Christmas Eve and Christmas Day.  J gets his Saturday and Sunday outings on Thursday and Friday.  We adjust to make his life more balanced, and hope that this is enough.

We think what we’re doing is working.  The meltdowns and SIB have dissolved into near-nothingness.  If he’s upset or anxious, the reason for his mood is easier to determine.  It is also easier to correct.  At five a.m. I hear him get up, go to the bathroom, and then stop at the hallway closet to get fresh bandaids.  He changes them himself.  No muss, no fuss.  J is, once more, in a place where he can exert some control, and this makes everyone happier…

Our fine-tuning of his diet is sort of working.  You don’t gain weight in one day, and you don’t lose it in one day either.  We are running, on average, about 2 miles with the Wii, and we are doing calisthenics that are helping improve J’s balance.  Still can’t get him to lay flat and not complain, but I respect this difficulty and work around it.  Some of his workout looks like those public television workouts for elderly people who have mobility issues, but a mom’s gotta do what a mom’s gotta do.  It is better to do a bit than to not do anything at all.  That’s the idea I’m latching on to, anyway.

Today I am hoping to do some baking.  I say hoping because I keep putting it off.  My hands, see, are not what they used to be.  The doctor has chosen fibromyalgia as my malady, but we are not sure that this is correct.  The idea of lupus was thrown out the window because I am no longer a woman of child-bearing age.  We wonder why not one doctor has X-rayed my hands to see if, perhaps, there’s some sort of arthritic thing going on.  Of course, no matter what I say -and I say plenty- no specialist that has dedicated years and hundreds of thousands of dollars to getting trained to be eagle-eyed for such things will acquiesce when a person with merely a M.A. in Liberal Arts says “are you sure there’s nothing wrong my hands????”  I work around the quirks, but it’s not easy: I can no longer make hollandaise sauce (because the hands “go” in mid-stir and so does the sauce. I can no longer embroider, color, sketch, or play the piano.

OK, I never could play the piano, but if I had been able to, I would not be able to do it any longer.

So my “hope” that I will get to make some baked good is in the incipient stages. I am waiting for the time when my hands are at their best…and this, fingers crossed, will coincide with J’s desire to make biscotti.  We’ll see.

The only thing troubling J right now is his tummy.  He is not sick, but he is not digesting well.  Yesterday I had to explain the concept of “constipation” to him; this is something I’ve done before but didn’t seem to click at the time.  I think now he’s getting it.  He has stated he is uncomfortable, and has accepted the remedies I’m offering.  I’ve explained he has to be patient because, sadly, these things don’t work immediately.  I explained that cheese doesn’t help, and he was not particularly amused by this information.  I explained that water helps…he understands this, and is making sure he drinks enough.  In the meantime, we wait, and he tells me (which is better than being angry and yelling, or hitting himself) if he is going to the bathroom.  I told him that, because he’s having trouble, I will follow closely, and wait to hear if he needs my help.  We are both mortified, but we are willing to work together to solve his issue.

I was thinking about the weirdness of our home life as I sat in the hallway this morning.  I was pondering why people who haven’t seen J in over fifteen years cannot fast-forward that last image they remember and accept the one I describe for them, or the one they see in pictures.  When I say “I cannot talk right now, J is in the bath” they imagine a child of four, sitting hip deep in bubbles.  No one thinks of the adult with hair all over his body, hands the size of holiday hams, deep voice and imposing physique.  I am not bathing a child, I tell them…I am bathing an adult.  It doesn’t quite sink in for the most part.

Of course, this is small potatoes compared to the bigger problems of the whole of mankind.  This problem, in fact, we can manage better because the anxiety and SIB are under better control than they used to be…

And so we move on to Actual Official Winter, and roll gently (over a bumpy road) to 2017…

 

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