hope and ok with not

i just had a moment.  a moment of despair.  of what the *&^%&#* is going on here?
was it the email i got with the negative feedback on our home for sale by the 20th house viewer?
was it the fact that i was on hold with jetblue because they messed up my flight for my medical missions training course - my online booking somehow booked me for a flight in and out in one day- instead of the week i need to be there.  was it that i know it was a computer glitch and i know i wouldn't have done that- but somehow this internet error will cost us another 200$?  super.
or was it that zoe had a meltdown at the park because she couldn't find her friend when playing hide-and-go seek, and i had to spend 15 minutes helping her regroup in the car in 90 degree weather- explaining again how important flexibility is in playing- how she needs to try to read the confused look on her friends faces- to not get so angry- to not storm off and shake her voice and her body- to try to calm her inner turmoil so she can engage in the world as she seems to want to.

was it that at the sandwich shop i needed to sit next to her- to remind her to not lick the jam off her gluten free wrap bread- to not use her fingers to lap up the jam on the plate- to just sit and eat her food, while her brothers need no prompting- no reminding.

or was it that after almost two weeks of single parenting, especially her- i'm just running on fumes- and i'm tired of needing to do so much for her- to wash her hair- to put the rubber bands on her braces- to fasten her bathing suit top- to tell her to stop laughing forcefully and flapping her arms during a movie- tired of having to remind her of what to do- the order in which to do it- to keep her on task- to keep her from being distracted- to help her calm down when she gets stuck on a thought.  i'm tired of the unpredictability of each moment- and of the exhaustion that comes from wondering if these moments are for forever- what are we to expect out of her future?  out of our future?

interesting that her name means 'life' - like hello, get used to it, this is your life.  it is what it is.

coming home to old friends and family i'm faced with seeing her differences more glaringly.  everyone else's kids - who are her age or  younger- are growing and maturing normally- becoming themselves- doing things independently- and i feel like we are stuck, straddling the age range from 3-12 in one child.  and it's isolating.  it's depressing.  it's an awakening- or a great big reality check. 

she's different.
she's special.
your life is not normal.
it never will be.

what do you do with that?  how do you live in it?  how do you create expectations or goals or even hopes and dreams for a child like zoe?  what is too much to hope for?  what is too little? and doesn't that devalue her? what kind of a parent hopes too little?

i need to continually find that balance between accepting and hoping-but with out waiting for what i'm hoping for to happen. hoping with out needing to ever get there.  it's the waiting and the needing that mess me up.

last night i was up late with my dear old friend of 15 years who we are staying with this week.  she asked me how i think zoe is doing- what we expect for her- what we think will happen with her.  and after a long day, in a long week,  sitting on her couch- i just let my guard down and said in full disclosure- i just don't know.  i don't know anything.  i don't know how i think she's doing because one minute i think she's 'better' and one minute i can't believe she's done something and the inconsistency makes me crazy.  i said 'i don't know' because it requires a comparison of some sort- 'better' than what?  'worse' than what?  i don't know what my expectations are- i don't know what my hopes are- i don't know what to expect.  i know what i'm afraid of- i know what i want for her.  but do i hope for that? 

and this is where the stillness comes in.

i'm sitting here, on hold with jetblue- hoping not to be one of those crying basket-cases on the phone- but feeling like this might be the moment that i fall to bits.  that this might be the moment that i let down my hair and explain to some random telephone strangers all the woes of my life.
...but i have no money to pay the difference! i'm leaving in a month to be a missionary in africa!
....but i have a child with special needs and my husband's been away and i'm worn down thin!
...but i'm really tired and i don't need this right now!

and a feeling of complete comfort washed over me- a feeling of stillness- that collected all my bits and stuck them tightly back together.  and i realized that 200$ is just not that big of a deal.  that it's ok to be tired.  that i am not consumed.  i am not in bits.  that there is hope- even if i don't know what it looks like or sounds like or how many times i need to wash hair. 

that i just have to live it- each inconsistent moment at a time-even stumbling and tripping and falling.  that there is no 'answer'.  that 'i don't know' is OK. 

burn out and recovery

i had a patient last friday, who i've written about before- he has ALS- a neurodegenerative disease.  he's getting worse, he is not able to do much for himself- really anything- because he's lost the use of his limbs.  on friday, his wife looked worse than he did.  she began to cry.  and she cried for most of the visit - which was over an hour.  she became the focus- because she has massive caregiver burn-out.  she is sleep deprived and exhausted.  she spends all day and night looking at a life she didn't sign up for- watching her husband slip further away from the man she married- and more into dependance.  she can't get away from the reality of their suffering.  and as she looks at him, feeds him, bathes him; she loves him, and she's also so angry- at his illness and the complete change in her life-his life-their lives.  she is in so deep, she can't separate herself out- she is terrified of leaving him- but she also wants a break-but that makes her feel guilty- because she can leave- but he can't- he's ultimately trapped- so the swirl of negative emotions gnaws at her- weighs her down. she can't see a way out. if she looks back she desperately misses her old life, if she looks forward, she sees his worsening and death and being alone.  the biggest clue, was that she'd started getting mad at him- snapping at him- and then being consumed by the guilt of that.  it's burn out.

i get it. not as dramatically.  i'm not dealing with a husband with a terminal illness.  but i get the day in, day out overwhelm of living a life you didn't think you would find yourself living.  of watching someone you love- suffer.  of facing it- literally- all day, and that snarl of emotions that follow.  of being lost in it.

today i feel withered.  it's such a good word, because it looks and sounds like it's meaning. still alive, but in need of revival.  crumpled over, pale, and kind of pathetic.  that's me.  when you're around a depressed person, you can tell because you start to become depressed- they kind of give it to you.  zoe does this to me- she gives me her yuck inside, her frustration and overwhelm.  i'm trying to stave it off- to maintain- to not wither.  i'm trying to remember what i need to do for self-preservation.
pray.
write.
breath.
pray again.
think about the big goals- the 30,000 foot view. let go of the little ones.
smile.  even though it's forced.
laugh. even if you can't think of something funny.

yesterday zoe watched the documentary 'the wild parrots of telegraph hill'.  it's about an odd, eccentric, homeless, jobless man, who feeds and observes a flock of parrots living in san francisco.  in caring for these birds, he begins to learn about relationships and love.   and in the end of the film- his two favorite parrots die- and he ends up moving in with some friends across the bay- and then falling in love with the documentary film maker.  so the lonely, unstably housed man, finds love and housing.  it's a nice story.  well zoe couldn't get past the death of the bird.  it was back to 'where the red fern grows'- she was so angry at me for having her watch such a sad movie.  so we went through the whole routine about allowing oneself to feel sad, to cry, and that to relate to characters is a good thing to do. but she'd missed the part about the lonely guy finding love- that the birds dying was an important step in him letting go, that it enabled him to move on- to find relationship with people.  that it's way more complex.  that you can have sorrow and joy.

and i'm trying to see this as good, and another step, but it feels like the movie 'ground hog day'- the same stuff again, and again. and i'm trying to remember that for her the complexities of emotions and relationships are really hard to grasp.  and i'm trying not to compare. and i'm trying to be in the moment, and not be scared of the future.

on friday, i told the wife that she needed a break.  that even though i wasn't her physician, i could tell she had big time burn out, and i was 'ordering' it for her, and for her husband.  he's on hospice, so they can have a respite week.  a chance for him to be cared for 24/7 in a nice home-like facility.  she can be there too, but  not have to do anything- she can sleep, or they can watch funny movies, and not have to feed him and change him- because for that week- someone can relieve her.  and maybe she can find herself again.  she's so burnt out, she might not do it.  she's so afraid to change her traumatic circumstance- like the  stockholm syndrome.

i get that too.  i almost didn't go to ethiopia because i was so afraid to leave, even though i was exhausted. thank God, mike new i needed to go and supported me in it.  he even used the right language- he told me i needed to go for my friend lisa, not for me.  he used care-giver burn out language.  "do it for someone else"- because the care-giver has forgotten how to care for themselves. sometimes you need to get out- get away- not think or talk about it, in order to remember yourself again.

sometimes you can't get away- and you just have to revive without leaving, without travel, and without escape.  and so you have to think of your favorite things....and when you can't even do that.....then you sing the song from the sound of music and remember maria's favorite things:

raindrops on roses and whiskers on kittens,
bright copper kettles and warm woolen mittens,
brown paper packages tied up with strings,
these are a few of my favorite things....

and then i don't feel so bad.