don't close your eyes

a few summers ago when i was beginning to wrap my mind around the changes that were happening in our family, when i was contemplating home schooling zoe, when i was spending my days overwhelmed by her overwhelm, i heard her belt out from the way way back of our car the words to the switchfoot song that was playing on the cd player,  

"this is your life, are you who you want to be! 
this is your life, is it everything you dreamed that it would be when the world was  younger, 
and you had everything to lose.

don't close your eyes
don't close your eyes..."

at the time, it was a moment of glory for me.  she may have had no idea what those words meant, she may have just liked the tune- but i interpreted it in full- as if she were asking herself the question- as if she had insight and motivation and the possibility of influencing her own life.

today we were in the car again, listening to this switchfoot song.  zoe said, "what do they mean 'don't close your eyes?'"  and i realized she hadn't grasped the depth of meaning back then- or even now.  now in another season when i fear her giving up- her stubbornness taking over-  when i feel her closing her eyes. 

the last month has been hard- lots of change- loss and gain- resulting in regression- steps backwards- returning to places i was glad we'd left.  this last month, we've spent a lot of time talking with zoe about her role in her own life.  about choice- that she has one.  about empowerment- that she can do things.  about her life being her very own, and about growing up, and decisions the good ones and the bad ones.  because she is growing up and it is her life.

she has this way of acting helpless and then wanting assistance and refusing it- or worse, accepting it but then regretting it and becoming furious. i'm sure it's all a symbol of her internal conflict about growing up- wanting to be independent and fearing independence, on top of an already conflicted self image, on top of trying to process her legitimate challenges, and trying to identify which to try to overcome and which to accept as who she is. so lately she gives up- gives in- doesn't try. the cobweb of it all is messy and sticky and not neatly spun and it's easy for me to become entangled - it's easy to become ensnared.

i've been trying to be calm.  to be a patient, listening mom- instead of the path of least resistance raving mad mom.  i've been trying to remember that her spin-y web is even more tangled for her- that it is harder to be her in this, that this needs to be supported through and not screamed away.  i've been trying to remember that she'll get there- we'll get there again. 

stories help because everyone likes stories.  we've recalled helen keller - who overcame great challenge- who had to chose- who made herself who she wanted to be with what she had- who opened her eyes- even thought they were blind. 

then yesterday i saw on facebook that my first friend ever- my original bff- just won a prestigious medical teaching award from Tufts University school of medicine.  and i remembered her story. 

erica was an amazing student, an avid reader- always hard working and naturally smart.  she was also incredibly kind and fun and sweet and thoughtful.  when she was zoe's age she got very sick and nearly died.  she experienced a miracle. she had a level of sickness that most people do not ever recover from- they never regain the cognitive ability they had before becoming sick.  for months after she regained consciousness she struggled to regain control of her body and her mind.  she did physical and occupational therapy- she work to walk again, and to see again, and mostly, to remember.  the coma she was in had stolen her short term memory- she could remember all of us- but not what we told her the minute before, not if we'd visited the day before.  it was hard and tiring and frustrating, but true to her character- she never gave up.  never.  she never uttered a discouraging word, she never said 'poor poor me', she never took her life- the life re-given her- for granted.

it took not just days, or weeks, or months- but years for her memory to return.  and it didn't just show up one day- every correctly firing neuron fired because of her blood, sweat and tears.  at first she learned to compensate- to lead the conversation in a way that would give her clues to what had happened or been discussed before. then she learned that writing everything down was essential- and that repetition was her friend and so she posted note cards everywhere.  she knew that she needed her memory to be sharp and focused and reliable- because she'd decided to become a doctor.  over the years i watched those note cards displaced around her house change.  at first beside her toothbrush was the krebs cycle, then the aminoglycosides, then the pathophysiology of kidney failure.  over and over- she'd read, she'd prepare, and over time- she began to remember.  slowly the cards began to fall off her walls, as the information she'd diligently and repetitively put into her mind, began to stick. her heart, her being, was meant to be a doctor.  she is exactly the doctor i want to care for me- smart, kind, loyal, hard working- and someone who knows first hand what it's like to make the choice to believe in yourself- and to do the work of recovery. she didn't close her eyes, or give up.  she knew exactly who she wanted to be- she knew exactly who's life she was living. she is a hero. she is my hero. 

i don't expect or want zoe to become a doctor.  i don't even care if she goes to college. but i do want her to believe in herself- to love who she is- and to try. i want her to overcome things- even if they are small things- because that builds confidence.  i want her to put up her own 'reminder notes', to care enough to retrain her brain- i want her to sing loudly from the back seat that this is her life- i want her to be who she wants to be.  i want her to never give up- to never close her eyes.