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.