reconnecting the circuits

spring in february is fantastic.  my yard is covered in daffodils, the trees are really budding, i'm spending most of my day outside on a porch- loving it. if only i could move my bed outside- i would sleep there- right there under the moon.

we had a good day.  a day of peace.  zoe came down stairs dressed instead of in her pajamas - without being woken up- without clothes spread out the night before, without being reminded.  it might be a first.  when she arrived downstairs i was on the phone - raising my still hoarse voice with a broken system at work- trying to get something ordered and pushed through the bureaucracy- for one of my patients - the one with ALS.

i had gone to his appointment with the ALS clinic on friday- to make sure he was getting what he needs- that things weren't falling through the cracks.  it was long and hot and he looked much worse than 3 weeks ago when i last saw him.  now he can't hold up his head- his arms are stiffer- he can't lay down without feeling like he's suffocating.  he looks like he's aged 15 years in the past 6 months.  looking at him, you'd not think he understands everything- perfectly- which he does.  he is literally trapped in a body that can't communicate. he has no speech.  he can't eat. he's losing his ability to write.  he's beginning to lose his ability to breath on his own.  it's really hard to see.  i know he needs me to talk to him as i would anyone- and i do.  he needs to feel like a 59 year old man- not a preschooler- which is how he is often treated.  we had to make plans- to get him some breathing assistance- to get him to be able to sleep at night.  i can't imagine the frustration he lives with.


zoe waited patiently for me to finish the call and got herself some cereal- asking all about the patient and what caused ALS.  after rocking through math she wanted to play a frisbee game on the wii.  she plays this maybe once a week (ie: it's not new) and she's pretty good at it.  and the weirdest thing happened and i had this incredible insight into her life.  in this game you move your arm as if you're throwing a frisbee and hold down two buttons which you then release when you want to let the frisbee fly.  right away she starts calling to me, telling me it's broken- the frisbee won't release.  but it will when i do it- so i realize that she's not letting go of the buttons and i remind her.  i'm really surprised that she has forgotten this.  well, this goes on and on.  she can't get the message from her brain to her hands- they just won't do it.  i was baffled.  i can't imagine how frustrating that would be.  so we broke it down into steps.  we just held the remote and held the buttons together and then released them- over and over and over again.  then we moved our arms like we were throwing the frisbee- over and over- then we put it together- practicing moving your arm and letting go of the buttons together- again, and again- then we started the game and put it all together- it worked!

the good thing was she was in a good place mentally.  she wasn't upset about getting help- she wasn't mad that she couldn't do it.  if she had been it would have been a full on disaster.  and, our plan worked- once her brain reset the motor process needed- she played for half an hour and did well.

i'm sure this happens all the time.  it must be why her copy work is so hard for her sometimes- why her she struggles to get things opened- or buttoned- or tied.  even if she knows the steps- the motor neuron connections aren't always functioning properly.  and what if that's similar to what happens in her brain when she has a meltdown- she knows she shouldn't react a certain way- but she just can't get her voice and her face to do what she wants.  i don't know.  but she handles it with more grace than i would. i can't imagine the frustration she lives with.

when i was her age my dad decided it would great for me to learn tennis.  a sport you can play for life- he said.  our neighbors had a court so he could teach me.  after a few lessons they nicknamed me McEnroe.  i had such high expectations for myself.  i knew where i wanted the ball to go and i couldn't get it there sometimes and i would throw my racket in frustration.  so how would i handle dealing with zoe's issues?  definitely poorly. 

what was kind of funny in the whole thing was she kept saying, "mom- i don't know why i can't just let it go! i know i need to let go- but i just can't do it!" it sounds like me. why can't i just let it go! 

i might not struggle with the her motor planning difficulties- but i do struggle with behavior planning difficulties.  i struggle with knowing how i want to act and then not doing it.  how i want to be and not be- and doing the opposite.  and i get so frustrated with my inability to put it into action!  so i'll try to remember this- that in many ways i do get her.  and i'll try to be more gentle with her, with me. 

breath deep- the outside air- where ever you are.