where we are and where we will be

sometimes we go to dark places so we can see light differently. so we can notice that we need very little to see.  that a small candle goes very far.  that things are even prettier in that shadowy flickering light.  but none of us want to be in darkness. 

sometimes in dark spots we are in places to hear things differently too.  we listen more when sight is diminished.  we pay attention in a new way.  and somehow in these times, other people respond to their still small voices and bless us with a flame or a word.

yesterday my friend said that she wished i could just allow myself to let go of working for a while.  now that we have rose, and as we settle everyone in to school in the fall, and zoe being zoe.  she wanted to encourage me to be in this season, to accept it as a mothering place and not obsess about when i can get back to 'reach out' clinic and when i should start teaching, and how i can get the 'action for  the needy' clinic up and going in luweero. 


i heard her. 

kind of. 

but that is my stress reliever.  figuring out my work life stuff, distracts me for the day to day challenges of still having to guide zoe through washing her hair, or helping people to the potty. it gives me a mental 'out' - it puts an end in sight.



then i had last night with zoe and when i was debriefing on the phone with mike, i realized that i was making some big assumptions again, i was beginning to expand my expectations.  i was putting too many eggs in my ambrosoli basket.  i could see that part of why i was so irritated with zoe and her outburst during bedtime last night, was because it was threatening my plans.  it was waving that flag "don't forget i have challenges!"  it was calling me to remember that learning differences don't go away when people stop homeschooling.  that her getting into school for next year is not any sort of a guarantee that she'll stay in school next year. i could see that i was mentally beginning to go about my life as if suddenly things were 'normal'.  but they are not normal and they won't ever be normal- at least not what i thought normal would be.


in the conversation i heard myself blurt out,  "but what if next year, i'm back at work full-time and she can't handle school?  what if the rug gets pulled out from under us again?  how am i supposed to get on with my life, with zoe?"


oops.


but my life is with zoe.  intricately woven with zoe- on the days that i like it, and the days when i don't.  this fact will not change no matter what i think or try or where school happens.  this is my life. it will be my life probably forever.


and in that dark space, i thought about what my friend said about being in this season.  and i realized that this season is much longer than having a 2 or 3 year old again.  this season is having a child with special needs.  in fact this isn't just a season- this is my new normal.


today i had daydreams about being back on the wards of moffit long hospital in san francisco.  the weird thing was they were good day dreams.  i have never missed residency, but i was thinking fondly about early morning rounds and reading ekgs and making plans, and discussing the case with the team, and speaking with the patient and family.  i was remembering and longing for feeling in control of my life- or someone elses life- or really anything- because life with zoe can feel so out of my control.


i pulled out the book that i'd read years ago- dana buchman's 'a special education'.  it's a memoir about a self-proclaimed type A, new york fashion designer with a daughter who has zoe-esque learning differences.  it was time to re-read it. again.  it was time to remember that other people have been here and survived, even thrived.  that when her daughter was 9 and 10, 11, and 12 dana buchman had similar fears and doubts and moments of utter inability to understand the mind of her child.


then i opened an email from my dad with an attached short article by joni eareckson tada- a quadriplegic and of the big advocates for people and families of people with special needs.  he wrote that it might be helpful as i raise zoe.  he listened to that still small voice.  he took the time to send it.  he was right. 


joni wrote about how God uses people who are weak, or suffering, or afflicted, to accomplish great things- to move mountains- to be leaders.  the bible is full of examples- the old and new testaments.  God picks people who stutter to give speeches, shepherds to become kings, an old man and woman to birth a nation.  Jesus picks people in the low brow professions to be in his posse, people with shady pasts to hang out with him.  but we see through the glass dimly.  we don't see that most people actually don't have it completely together.  that we are all broken.  that God turns broken into even better than new. 

i have not idea what zoe will do, or really what i, with my challenges, will do, or when i will do them.  we are part of a giant puzzle trying to do our small piece to make things fit together.  we get so mad when they don't fit.  sometimes we need to wait.  sometimes longer than we wanted. sometimes we feel like we are stuck in that movie 'ground hog day'- reliving the same frustrations again, and again, but we're not.  we are slowly learning, growing, moving, being shaped and pushed into a better version- into more whole than before.  even zoe.  even me.


so i sit with those two bits of light given by a friend and a father. 
'be in your life.'
'know that God loves broken- uses broken- enables the differently-abled."


words of hope.  light in darkness.
accept it. embrace your life.
hold it- because it is full.  life is full.  and there is goodness.