It’s not whether you win or lose. It’s whether you know you’re playing the game…

Yesterday morning things went well.  Throughout the day we were on a fairly even keel.  At dinnertime the nearly-herculean feat of getting J to eat without his wrist brace on was repeated after a successful morning attempt.

The meltdown came three minutes and 42 seconds before bedtime.

I kid you not.  Why would I kid you?  We had the usual “it’s time to take my bath and I’m going to hit myself to show that I still can,” and that was brief, mild and mainly in-name-only.  At a little past ten P.M., when we were getting ready to stand up and help him pack his stuff to migrate upstairs for the night, we heard the loud pounding.

Saturday had been iffy, but I expected that because we ran out the door early and without eating so we could go to the lab for J’s blood work.  He was pretty good.  He was, as is to be expected, anxious, but he cooperated.  The only problem we had is the same problem we ALWAYS have…J doesn’t know how to keep his arm straight.

A side note: what J has received in terms of PT has been minimal.  Rolling a ball, catching a ball, things like that.  If you are a Physical Therapist and feel offended about how trivial I make that sound, please understand that I’m not saying your profession didn’t do enough; what I am saying is that you are all overworked, over-booked, under-funded, and pressed for time.  When J did get Physical Therapy it was for half an hour a week, and I’m pretty convinced that 25 minutes of that half hour were expended in helping him relax because, sadly, my son doesn’t like to lay flat on his back and anything that involves that is prologue to grappling with the Gorgon.

I work on that at home when we’re exercising.  J does jumping jacks with his arms bent at the elbows.  He also doesn’t know how to stand up with his knees straight…not locked, straight.  And he leans to the left.  Not politically…he just leans to the left.  His shoes are more worn on the left side of the left shoe than anywhere else.

So getting blood is not always easy.  The lab technician who worked with him on Saturday is very good (she’s drawn my blood before,) and she was very kind and patient with J.  Hoping that she’d be there working on a cold and dreary November morning was why I decided we should drive a little farther.

The lab results came back that evening, and only one number worries us because (yes, we googled it) the number could reflect hypothyroidism or that he’s had seizures.  We are hoping that the doctor will get in touch with us before the Thanksgiving holiday, but we doubt it.  I called a cousin who is a very experienced doctor (oh, shut up…you would have, too, if you had one,) and he said that the number could reflect both things, but that we won’t know more until they do either a CAT Scan or an MRI.  He said to talk to our doctor, and to let him know what he says.  When it comes to bedside manner, and being the voice of reason, our cousin is amazing; he is trustworthy, kind, smart, no-nonsense, and will be professional throughout the medical questions portion of the call…then we’ll go back to the normal behavior of people who talk about baseball, family, weather, etc.

So our concerns were addressed with sufficient clarity to prevent us from hyperventilating all weekend.  We remained concerned but calm, and we have a list of questions for the e-mail Dada is sending the doctor today.  We are, however, in what we call “productive worrying.”  Panic lasted a very short time because J doesn’t need panic; J needs productive, proactive behavior.

Yesterday the weather wasn’t as nice as we wished, and J wanted to stay home.  He was good, as I said, eating without his wrist brace.  He was good with cleaning his room and changing his sheets.  He was OK during his bath-time, and pleasant all afternoon.  In the evening he engaged in some sock sorting and folding, and then he played hoops pitching them into the laundry basket placed across the room.

It was those 3 minutes and 42 seconds before bedtime when he completely forgot, or chose to forgo, asking for help with his bandaids.  And he lost his patience very quickly when we didn’t immediately make them materialize out of thin air.

My last words to him last night were “we’re going to work on patience and asking for help tomorrow, and I love you.”

This morning he woke up happy.  I saw his fairy lights on, and went into his room to find him sitting with a pleasant smile on his face.  I asked him if he wanted bandaids, and he said he did.  So we did the bandaids early, and -after removing his brace- I said “if you need to do something to soothe any anxiety, just try to not overdo it.”  He helped me unpack each strip, and then handed them in the order he wants them applied.  Right before finishing the whole ritual I said “last call…now’s the time!”  He looked at me, and then he hit his head…not hard.  He actually seemed to be counting how many times he was tapping it, and it wasn’t the uncontrolled, vicious hitting of a few days ago…it was more like he needs to do this to calm himself.  Little by little (and this is a matter of seconds, not minutes,) he decreased the force he was using, and it ended up being touching his hand to the spot he usually hits.

After that he sat happily in his bedroom until 9:30, and then he calmly got his snacks from the garage, grabbed his yogurt for breakfast and sat in the TV room watching Chip n Dale Rescue Rangers…

And then came the screech…

Or the screeching wail…

I was nearby, thank goodness, because if I’d had to navigate stairs I might have fallen and broken a hip.

You hear a screech and you assume “shit, he’s hurt!”  So you run.  And bounce.  And push things out of the way.

I opened the door to find him sitting placidly on the couch, and smiling.  Nothing.  Nothing was wrong. I asked.  I checked.  I patted him like Sarah Connor pats John Connor to make sure he’s fine when she is rescued from the mental hospital.  I asked with the Proloquo.


And I feel like this:


Happy Monday, everyone…sigh…




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