freedom behind the boundary

the other day zoe was perched on her bed, in the nicest and largest room in the house that is now her own bedroom.  the one separated from the rest of us- by the living room and kitchen. she had just lost her computer for watching youtube homemade videos of kids playing LPSs (littlest pet shop pets).  i just find homemade videos online creepy- or potentially creepy or at least difficult to closely monitor, so that's my rule. and i've told her a thousand times- no youtube homemade videos!

this was her response
"ugghhh mom! i have NO FREEDOM!!!"

as if.

as if i hadn't just given her her own room.

as if i hadn't spent the last two hours picking through large baskets filled with silly bands and hair elastics and miniscule lego pieces and tires of small toy cars and felt-board characters and coins. sorting which parts of things should be kept, because they will be requested at some point soon (moms always know which random broken items have become treasures), and which can be thrown or given away.

as if i hadn't then lugged everything into the new room and found places for all the random treasures.  that is true love.  that was done FOR YOUR FREEDOM!! i wanted to yell back.

but.

you are almost 13.  i'm annoying.
you couldn't resist watching the videos.  you don't like consequences. you don't like punishments.
i don't get you- you say.  you're right. i often don't get you.
but girly- i'm trying to give you some freedom.  and space. and independence.
i want so badly for you to know these things- to be your own- to separate- to make your own choices- ones that won't hurt you. 

freedom: the power or right to act, speak, or think as one wants without hindrance or restraint. (google def.)

is there such a thing? without hindrance? with out any restraint?

i don't think so.

i grew up with a brother and a sister and i understood my freedom in the context of my family.  i heard my mom clarifying the definition of freedom a lot - "your freedom ends where his nose begins".  it was really in the safety of the boundary that we found our freedom.  when the venn diagrams of our lives overlap- the rules of freedom change in that shaded area.


boundary- something that indicates the farthest limit of an area. (google def)
boundary- the edges, the clarity, the perimeter, what hems us in behind and before, the limit that creates the space for full freedom and also gives safety- protection- care.

with out the rules, the edges, the limits, we can become unwound. overwhelmed. unfocused. 
today i read psalm 16- "the boundary lines have fallen for me in pleasant places".  i love this. that they are there- those boundary lines- because they provide direction and guidance and i need to be hemmed in.  i choose containment- because i trust the one who sets my boundary. 

the thing is, sometimes those lines aren't pleasant, they feel constricting and we feel claustrophobic and stuck and they are leading us straight up a high mountain pass.  sometimes we feel tired and we long for a giant open space- a flat field.  but we don't live on those hard trails forever. we do come to places where the stones roll back and the fences spread out and we can shed our packs and our heavy shoes and we can dance barefoot- and in that dancing our freedom explodes.  as we feel the grass under our feet, we can look back and see what we learned along the way- that now we are able to dance out of a deeper level of graditude, with more passion than we ever had before- that He who lead us up that winding road- has turned our brokenness to fullness- our wailing into our dancing- our bondage into freedom.

i want this for my children.  i want them to understand where their freedom lies.  i want them to live life fully- to embrace guidance but to make their own choices- to transition to the natural consequences of their decisions.  i want them to be prepared. to have the word in their heart- to know the one who guides them-to accept that boundaries are good, to trust them, to learn to set them for themselves sometimes.  to act and think and speak in ways that bring freedom to many, not just themselves. 

and oh, i so badly want them to dance.

3 months with rosie

this is our second family picture since rose joined us, 3 months ago today.  it seems like a lot longer. in a good way.  now she's met some of the grandparents.  she has her own room.  she eats pizza and nutella, but still loves rice and beans.  she goes to sunday school with the big kids, she knows all the objects in her ABC book- she likes to say "mom- come 'eah" and "i'm comin'!" in this sweet little almost boston accent- that cracks us up. 

bascially we can't imagine our life with out her.

we are kind of in love.

complicated or not- we love her- another little beastly ham.

good apples

“Life will break you. Nobody can protect you from that, and living alone won't either, for solitude will also break you with its yearning. You have to love. You have to feel. It is the reason you are here on earth. You are here to risk your heart. You are here to be swallowed up. And when it happens that you are broken, or betrayed, or left, or hurt, or death brushes near, let yourself sit by an apple tree and listen to the apples falling all around you in heaps, wasting their sweetness. Tell yourself you tasted as many as you could.”
― Louise Erdrich, The Painted Drum LP


we said goodbye to my parents today after a 3 week visit.
it was hard!
they are good apples.
they are full of sweetness.

  

















they were here during important times. our trip to karamoja, and my loss of a friend they knew as well. time with grandchildren they helped raise, and a new one they were just meeting- all loved just the same.

they were good at living life with us. eating toast for breakfast and doing dinner dishes and having endless conversations with zoe about her kindergarten nemesis.  they read books and played cards and "littlest pet shop pets".  they did clinic with me, walked the campus and admired the library, sat in traffic and did the grocery shopping with me.  they shared stories that were funny and stories that made us cry, and think and learn, and be inspired.  they listened well and commented supportively- when they could have said a whole lot of things about our crazy. and when things were crazy and four kids were whining at once or smacking each other, they didn't criticize or roll their eyes.  instead they winked and told us they now have a better understanding of how to pray for us.

we were sad to say goodbye, but so very thankful that saying goodbye is hard and not easy.  thankful that we'll miss them so much, that we have them, that they're not so far away, that we'll see them in 4 months. thankful for the love.

reframe it with out a frame

it's only tuesday but if feels like it could be friday. i think it's just one of those timeless weeks.  those weeks when schedule and dates and time is replaced by the ticking of fans, the awareness of our tires on the road, the feeling of the cool air on our arms - when again, the cards have been shuffled and our emotional response to life has surpassed our intellectual response to it.  when our right brain takes over as our left brain is befuddled.  yes- that is what this week is.

there has been exposure.  goodbyes, with out getting to say goodbye. processing. which always leads to more processing- because once the left brain is allowed to rest- lots of things move to the front- and our senses enliven and we begin to feel more, to pay attention differently, to pause, to breath, to remember.

sometimes in these timeless times i indulge the sadness.

when i arrived home on saturday after that long day , i told zoe that my friend had died. she gave me a big hug and told me that i should go and watch some sad parts of movies to "feel better".  i think she meant to "feel", to access my emotions- so then i might feel better.  i get this and i'm glad she does now too.  and i did this sort of- not by watching sad movies, but by reading other peoples lives and connecting over things that are similar and hard- so that the timelessness and the exposure feel less alone.

whenever i indulge and process, i inevitably end up re-grieving some of the past harder seasons in life- and often land on feeling very sorry for myself for the hardness of the never-passing-ness of a season.  life with a child with special needs.

in my indulgence and processing i read two beautiful stories about children and down syndrome. the first was about a woman who had been told during her pregnancy that her son had down syndrome and when he was born- he did not.  the second story was about a woman who had been expecting a "normal" daughter, and when the baby was born, she had down syndrome.  both stories were about the shock of not having what your were expecting.  not getting what you'd planned for, and the disappointment that comes with that- the grieving of not having "normal" and the grieving of not having the child with the syndrome.  it was fascinating to read them and see the similarities in the process given the extreme opposite of the outcome.  but they were both grieving the loss of what they'd expected and prepared for.  and both were able to embrace their new babies and love them as they are.

talking about loss and grief is complicated- because while it's universal- it's also competitive.  it can unite us or divide us. we can feel totally alone, misunderstood, that we are holding the shortest end of the stick, that everyone else has it better- or we can feel unworthy of pity, guilty for grieving because it could always be worse, someone else is really suffering- so who are we to complain?  mostly we vacillate between the two or worse, feel both types of negative feelings at the same time.

i say that because- i've sometimes been envious of people who have children with down syndrome. that was in a whisper voice- as i don't want to upset or offend or confuse- let me try to explain.

in having and raising and teaching and living with zoe, i've so often longed for clarity.  i've longed for a diagnostic code, a chromosome that i could blame things on (so i could stop blaming myself). i've wished for an understanding of how, and what to do now, and a large body of literature and studies and known-ness about what could or would or should happen with my child.  i've longed for a large support network- a community of kids who share at least some known similarities.  i've longed for a way to put edges on our life together, a way to package it- to make some sense of it for myself and everyone else.

i've even longed for the sweetness, and joy and caring that the children i've known who have down syndrome exude. and i've longed for life with out the anxiety and depression and obsessiveness that can come with having only 2 copies of chromosome 21- but some non-genetic, non-imagable brain differences that make navigating and managing life, very difficult.  i've even longed for a visual cue that she is different. a way that people would know ahead of time- to tread lightly- to be gentle.  but mostly so that when i look at her, i would remember that she is different and special and that it will take her longer and that more is required of me.  because i look at her and i forget.  and i hate that i forget because my forgetting hurts her.

i've longed for it to stop unfolding so i can catch up with processing it.  i've wished that i could stop being duped.  that i could have avoided the years of denial- the seasons when my mind worked so hard to convince my heart that things were normal and fine.  that i hadn't missed those years when my heart could have been working on teaching my mind that there is nothing so great about 'normal', and what is normal anyway- and that neither have anything to do with being "fine". 

being "fine" is about the response of both of the women in those other stories- being fine is what i strive for and need to create space for in my days and my minutes.  being fine is in thanking God for life as it is.  thanking God for the child you've been given no matter how many chromosomes it has, no matter what it's brain looks like.

being "fine" comes with thanking God for the mystery of zoe- for the constant unknownness- for the opportunity to live an unexpected life.  it comes with being thankful for the gift of not being bound by a frame.

instead of being "fine"- we parents of kids with special needs- whether they wear their special on the outside or not,  have volumes written about them or not, are neatly categorized or not- we have the chance to be way more than fine.  if we can let ourselves, if we can sit with the mystery, we get growth and depth and a perspective that is transformational.  we get real real.  we get the raw, bare, truth of what it means to be human- in all the child-like mess of it- the simple beauty and the ugly of it.  we get adventure and change.  we get 'new york super fudge chunk' instead of vanilla.  we get a rainbow.

and our kids?  they do too.  if we can remember that maybe we won the lottery even though we never bought a ticket.  if we can live in the LOVE that we have for them, instead of the whys and what ifs, and buts.

after i finished reading those stories on line, zoe came in from brushing her teeth.

"mom can we watch 'mirror, mirror'?"

 it was 9 pm and i was tired, but.

"yes! lets watch a movie! that is a great idea."

i looked at her as we sat on the couch together, ready to pop i loved her so much. i answered all her questions about the confusing parts of the movie. and i rubbed her arm as she tried hard to resist flapping her hands during the exciting parts.

it was a moment when i remembered.  when i was so thankful for this whack, flavorful adventure, and that this was the girl on it with me.

in parallel

yesterday was so long and there was so much there, and i was so tired and had so much to say, but no idea where to begin- that when we finally reached home, i kissed the kids who were still awake- ate too much peanut butter with too many chocolate chips, drank milk tea and tried to watch 'pride and prejudice' (chosen so that i could be totally removed to another place and time).

but right after that great exchange between mr. darcy and elizabeth bennet,

mr. darcy: So what do you recommend to encourage affection?
ms. bennet: Dancing. Even if one's partner is barely tolerable. 

i fell asleep. 

yesterday my dad and i spent the day in the village in luweero.  it was a long day at the clinic, after a long drive to get there, with too many people in the car, and a long drive back.  but really, there is nothing in the physicality of the drive or the talking through a translator to the 60 patients we saw, it's in the constant reminder of the state of affairs.  it's the problem solving of how to remove so many barriers, all day, with almost each case- that gets exhausting.  it's feeling like you're not able to do anything for people.  it's like being a doctor during early 19th century england when mr. darcy was falling in love with elizabeth bennet.

but we are not in the early 19th century. and i trained to be a doctor in big cities in america, in places where we did not just do anything, but everything for our patients.  where one life- really mattered.  where it was hard to not see the idea of death as a failure.  where deaths in the hospital are the rarity not the norm.  where hospitals don't turn away really sick people.  where the individual trumps the group- where saving a life- trumps time and cost and inconvenience.

but this is africa. this was a rural village.  this was a child in a family, in a tribe- not the same idea as we have of an individual.  and this was a sick child.  a sick child just diagnosed a few minutes before with HIV.  a child with deep festering sores all over him- armpits draining pus- neck and back denuded- all of them covered in flies- flies that wouldn't leave. this child was sick and tired and whimpering and hot and floppy.  he needed to go to the hospital- to start HIV meds, to get a correct diagnosis of the skin lesions and IV treatment for his infection, some hydration, some wound care.

we told the family that because there was no pediatrics in the local hospital,  we would refer him to mulago, the national referral hospital in kampala. dhundhundhun. yikes.  they were not thrilled. 

they have no money- how will they get there? how will they pay for the treatment?  they dig for yams everyday.  i'm sure they wondered why we were so worried about a 2 year old AIDS baby in a village? this is life.  life has death.  things happen. we usually have no control. 

we looked at their somewhat blank and seemingly over accepting faces of the cards they'd been dealt. 'but your baby could die soon!' we said.

i'm sure they knew that.  i'm sure they were surprised that we used the word could and not will.

after they agreed, i called a wonderful professor of pediatric HIV who works there and she told me how to get him seen.  i wrote the referral- gave money for transport- told them we'd follow up and help get them what they needed at the hospital.  we sent them off- it was the best we could do.  but.  i had a dark feeling in me- that things wouldn't work out- that i knew better- that they knew better.  that we all knew that the system doesn't work as it should or could.

at the end of clinic as we packed things and people in my car i became aware of a massive swarm of flies in the back seat. there was the child, in his moms arms- everyone now covered in flies. 

there had been confusion- they would need help navigating the big city hospital- so we opened the windows drove down the 25 km dirt road to meet the next car that had people who spoke lugandan and could take them. but i gave it a 50-50 chance that they'd actually go.

when we finally got into a town where i could access internet service on the phone- i found out my friend, who had been sick and in the hospital back home, had passed.  i knew she was dying- i knew she had end-stage cancer.  i had been thinking about her constantly.  it was not a surprise, it was in fact a relief that she'd gone comfortably,  but i just wanted to be alone, to drive and cry-(about a lot of things). not in a car with flies and people speaking loudly in another language.  i didn't want to think about that child's gross wounds and the hopelessness of the healthcare here, or the absurdity of how some people are surrounded by cleanliness and pain meds and beautiful music at the end - and others can't pay for a crowed taxi to attempt to get their kid life saving care.  i wanted to think about my friend and her life, and our memories, and the unfairness of her death at 41- after everything had been done. but how could i when i was riding in my own car, with the unfairness of likely death at 2- from something treatable??

that night i slept hard, but woke a few times with the peace of my friend smiling at me, reassuring me that she is now well, alternating with the disruption of that inner voice saying "you shouldn't have sent them to mulago".  i know better than to listen to most things in the middle of the night- but i trusted the first and feared the second were true. 

and i was awoken with a phone call from on of our workers saying mulago had brushed them off- not admitted him- the boy was given a prescription for an ointment.

an ointment.

in the places i've trained in and worked at in america this would be: admission, infectious disease consult, blood cultures, wound culture or biopsy, TB test, CD4 count, CBC, electrolytes, likely initiation of antiretrovirals, rehydration, IV broad spectrum antibiotics.  the parents would be told that the baby would likely be okay- that we'd figure it out- that a doctor would be there all night, nurses would be there all night.  the child would be fed, put into a safe, comfortable and clean bed. gloves would be used, needles would be thrown away in an osha approved needle waste container, hands would be washed, universal precautions would be taken. communication would happen. 

it's just hard.  death, no matter when, or how, or why.
it's hard to be far away from a friends dying.  hard to practice medicine in a place where death is accepted when it seems it shouldn't be.  it was hard to practice medicine in a place where death wasn't accepted when it seemed it should have been.  unstoppable cancer.  treatable infections.  western top end city hospitals.  small villages in africa with no real access to care. 

is it unfair? yes.  did both things break my heart. absolutely. do both things break God's heart?  i'm sure they do.

what is our response?

do we shut it down?  pack it up? close off? become bitter? sarcastic? resentful? angry at the God who gave us life in the first place? so angry that we don't believe in God's existence? we can.

or we can choose to cry, and miss her, and support her family, and pray for them, and each other. 

we can apologize for sending the baby all the way to a hospital that turned them away-and thank them for trusting us- hope they trust us again- get them the best medicines we can give as an outpatient, clean the wounds ourselves, and pray for them.  we can pray for encouragement in the midst of discouraging times and in discouraging places.  we can pray for the strength to try, to do our best, to tell the people we love that we love them- often- because who knows what our days hold.  we can pray for the courage to go back to the village, to work in a broken system, to slowly chip away at improving it. 

we can remember our best days, learn from our bad days, hold on to our laughter but also our tears- and thank God for all of it.  yes.  all of it.  thank God that it breaks her heart too.  and we can do our best to love each other.

finding and accepting

week one of summer vacation has come to an end.  seven more to go.  i feel kind of terrible that i just said that- but it points to my, of course, lack of planning.

i try.  i try to be that mom. the mom with the schedule- the already researched art projects, the every thursday swimming afternoon, planned meals, always a plethora of healthy snacks.

but.  i have to admit, i'm just not that mom. i'm the other mom.  the one with a list of summer ideas scribbled on the white board, along side of other things i'm afraid i'll forget if i don't write them down like "buy new whiteboard markers" because i can barely see my list.

summer vacation, with out the schedule of school, shines a nasty light on my other-mom-ness.  it brings it screamingly out into the open for all of us to experience- and suffer the consequences of.  every morning begins with this comment from the peanut gallery:  "mooommmmm, what are we going to do today?" 

me: "umm, i don't know but maybe i can have a cup of coffee first."
them: "it says on the board, horseback riding today"
me: "no it doesn't- that's just a list, it's just things we could do sometime."
them: "no mom, it's fifth down on the list and today is friday, so we should be doing it today."
me: "it's not a schedule! it's suggestions!"
them: "but we haven't done anything yet!"
me: "summer is a long time. if we do that list this week- we'll be all done! we need to stretch it out."

but i looked at their little bored, desperate eyes and thought of my day at home with them- batting each other with whatever stick they could find, the revolving kitchen door in search of food every 15 minutes, and thought maybe today would be a good day to ride because today had started off badly for me.

i didn't want to get up because i was afraid to check my email and hear bad news about my very sick friend. i wanted to hole up under the covers and just not have to deal- because "not having anything to do" seemed like a pretty pathetic complaint compared to me losing a dear friend on the other side of the world.  today i didn't really feel like being a mom and having to plan and entertain, i just wanted wanted to be taken care of.

i don't think i even realized how deeply i was carrying the sadness of this far away potential loss until i snapped at the ugandan version of a metermaid for asking me to pay (what mike pointed out was 8 cents) for leaving my car for 2 minutes to go to a bank machine.  i literally argued by the side of the road and did the math- explaining that i really owed him only 10 ugandan shillings, not the 200 he claimed.  he refused my crazy 1/2 penny offering and i drove away-having to explain to the four kids why he wasn't a jerk for asking for money- that actually i was. oops.

the stable was great- the three older kids rode- rosie was too scared to even pet the horses- but it was a good time.

but then we went for lunch at a local ugandan roadside place- and it was more of the meter maid scene. 
i was having a rough time. things that shouldn't have set me off, did set me off.  instead of listening to my inner voice, i ignored her.  i chose the paths of most resistance- i actually asked them how it's possible to run out chapatis? not a good moment.

i surely set the tone for that meal- no surprise it didn't go so smoothly.

but what i found so amazing was that i'd started that day asking God to walk with me.  even though i got out of bed cautiously, i'd read my bible, i'd prayed, i'd asked God to hold those i love and to help me through this day.  so just imagine if i hadn't? it would have been a full disaster!

the night before i'd read something, from somewhere about a jesuit priest who was writing about our constant search for Gods' will in our life- and how we need to realize that Gods will for our lives is found in what happens to us every day.  the here and now of our days is the living will of God.  so it's what we do with our moments- the ones in front of us- that matter.  not our big plans, our grand ideas, the exciting stuff.  God's will is there too, but mostly it's hiding in the conversations with meter-maids and waitresses who run out of chapatis.

doh.

reflection is so good, and humbling and hopefully realigning- and often, for me, embarrassing- but that's okay.

i'm off to bed. tomorrow i get to return to luweero - to our mobile village clinic- to hopefully allow the will of God to be in the doctoring small places. to let the day be what it will be. and to keep accepting it when i get home to four small children who wonder what on earth we'll do tomorrow.

listen

i love this picture taken by my dear old lisa coris- friend for life- travel-mate, creative soul and good listener!

there is a reason why God gave us two ears and only one mouth.
we should listen twice as much as we speak.
i'm. so. bad. at. this.
there is so much we should listen to, so much we can learn.
we should hear what people are saying.  we should listen for what is behind their words.

we should listen to those we are guiding- as we guide.
the small ones who we raise- have big things to say. things that need to be heard.

we should listen to our inner voice- the one we love to ignore.  that one that guides us, knows us, knows the right path.  we should listen to that still small voice that wants so badly to help us be still and know, that wants our peace and joy. 

we should listen to our world around us, intentionally.  we should remember to stop, and listen.  listen to the rooster outside in my yard clucking like he's gone mad.  to the sound of bats tinkering around in my porch roof.   to the monkeys jump from one tree- the silence as they fly through the air- then the loud swoosh as they land in the next tree. or just the sound of quiet- like the picture, just the wind.

listen to the quiet of the house now, and soft breathing of my children and the night frogs and the distant town.