Be Still and Know

 it's the last day of my very lovely vacation and i just read a beautifully written 'perspective' piece in the new england journal of medicine. the author Grace Yi, has just finished her intern year, full of trauma, death, sorrow, grief, and overwhelm with little room for processing and she goes on a week long buddist silent retreat prior to starting her next year of medical training. she wrestles with the concept that pain is inevitable but suffering is not- that suffering comes from wanting the world to be something other than what it is, from not accepting that some things don't work out, children do die, people who are mean win, things are often unfair. for the author, seeing all of the pain with eyes wide open, she hopes, expands her capacity for caring well for others, for tapping into our shared humanity, and ultimately feeling more alive and united. the silence of the retreat is broken when they are asked to share their mantras, the woman near her who had lost her husband recently said, 'it's now like this'.

i was reading james this week, and annie dillards 'holy the firm' and trying to be quiet and be out of doors - in the green and by the sea and closer to God. i've been trying to sit with sad feelings of a strange stage of life that seems surprisingly scattered with losses- aging, dying parents, children moving out of the house. big shifts in family culture come with those things maybe especially when when the family was rarely defined with a consistent address and only by the 6 of us who often found ourselves in the same room of whatever house we were living in- doing our life together, in very close proximity. so i've been sitting with this.

august is the month we are now in. the month that will mark the 1 year anniversary of my dad dying. the month of my 32 wedding anniversary. the month my 3rd born will go off to college for the first time- leaving us with one at home- we've gone from 6 to 3. poor rose. 

i'm sitting with the anticipated silences. the awaited spaces at tables. the known longings. it's hard. it's now like this. and will be and will continue to be as we will lose more parents, as rose will get ready and leave the nest too. 

for most of my life i've avoided sitting with these things. i've filled up my days with anything that could distract me- we are getting ready to do a home renovation project, that would be the ideal candidate for occupying control, order, to do listing, busyness, obsessiveness. so intentionally on this vacation, i didn't do any of that - i read and walked and ate good food and had good conversations and wrote letters to my kids at camp. i paused and let tears come when they wanted to and talked to girlfriends who are saying goodbye to their babies too. feeling the feelings is hard when the feelings aren't just happy- but i'm learning. 

i'm learning and it's like this now.

today it was -4 degrees when i left for work. somehow it's still beautiful. there is snow on the ground. the house is warm and so was my office and the light going and coming from work was calm and holding- a closed sky. 

i just returned from 3 days away in newport, RI with mike. one day of decompressing, the body lets go of the stress of it all. one day of being, just being in the moments, walking the ocean trail between the sea and the mansions built a century ago, preferring the view of the waves and rocks. listening to the wind, the pull of the tide on rock and sand. crawling up boulders, past different shades of lichen, far from my typical days. then one day of opening up, dreaming, sharing, remembering older versions of selves. talking about how to hold that, bring it back, keep it in our days. 

so good.

i read an article by tish harrison the day i got back about change in hard times, impossible circumstances, it was also about bearing. it was called 'go slow and repair things'. i've been in a season of hard things at work in a job that i care desperately about. i care so much about it that it wakes me in the middle of the night most nights and i do the best thing i can do, i pray. i pray for people by name. i work with people with disabilities, and with people who care for people with disabilities, who also require care because the job is hard. and in my patients i see my daughter. i hear her voice, her struggle to be understood, her frustration, her hypersensitivity to the world around her, her overwhelm. and i see someones brother, son, sister, aunt. 

i am by nature, a sprinter. my life has been trying to teach me long distance running over and over for decades there is no sprinting in autism.  i like pushing hard and overcoming. i like moving fast and winning. i don't like pain. enduring. pacing. i want to get it over with. but what i'm realizing, again, is that many things require time, long-suffering, going actually slowly, and repair. 

the article was about how we often want big moves, powerful changes to bring about things, quick fixes that get the job done, but so often the actual right moves are slow repairs- small scale shifts, gentle nudges, one person, (or turtle) at a time. we each do our part, or we make what seems like a slight adjustment, we have a conversation, we invite someone, show kindness, respond differently, find the third way. eventually that is how change happens. 

initially i was thinking about this in terms of work- and it's very applicable. but then i began to think about it personally too. what if i held on to day 3 of my trip by going slow and repairing the abandoning of self that can happen.  what if i made small shifts to find those old versions of myself that painted and did collage and wrote? what if i dreamed? what if i looked at the lichen colors and climbed more rocks? 

3 days away gave that space to see more broadly. to remember. to reconnect. to slow down. to look at what might need repair.

 i'm looking out over snowy roof tops in newport RI. it's the end of January, cold as can be and the light is a somber whiny afternoon light, pretty but yellowed, muted. 

it's the end of january and i never sent Christmas cards,  i just now made the new years photo calendar that i make for the grandparents ever year. i delayed because there is one less grandparent. i didn't send the cards because how do you say in a short summary card that you lost someone who was a part of you? it seemed too much. so i didn't send the cards, and in the calendar my dad's photo is the only picture in May- his birth month. i never imagined shutterfly would play a role in my grieving process. 

but maybe it's not just losing my dad that kept me quiet this year, from sending out the end of the year card. maybe it's the kids all being grown or near grown and having their own selves to speak from. how can i wrap them up in where they are studying or what sport team they play on. i see their big beautiful selves as so layered and unique and their own, that i don't dare speak for them or try to sum them up quickly. really what comes to mind is awe. how these four people are my absolute favorites, i can't put it into words and maybe i shouldn't. and maybe i don't know where i'd begin to sum up any of it.

this is a strange season in life. i'm past the middle of my own and straddling the generations. i still have kids at home but am losing them as they become adults which is the whole point after all. my parents are having needs and then i'm losing them in death which is to be expected. yet somehow, i wasn't expecting this season of loss in my 50's. 

the thing is it's not all bad. but i'm finding that i need to adjust to a new normal.  a new way of being with my older parents and help them as they experience decline and loss. a new way of being with my kids as they leave home and become adults outside of my home starting their own lives, adventures, separate and appropriately independent. it's so exciting and i'm so overwhelmed with gratitude. 

and i'm left with with a season of looking at me differently. who am i when i'm not the mom of kids at home? what shift in identity is that? what opportunities are waiting? what newness? what is waiting to be birthed? 

the light has gone and a quiet calm has settled over the bald trees and roofs. i watched as the amber faded to rose and then this blue- dusty grey. the lights are coming on in the houses, soon a star will be seen. i think i will send a new year card- maybe this year, no words, only pictures, this year, they will tell their own story.

 i've been watching my father's decline for a few years. a man who i have turned to for advice in so many areas of medicine and life, has been slowly slipping away. i don't recall the exact moment when i realized that i was now the senior doctor in the family, no longer he. the cross taper had happened, he was calling me for advice. it was slightly unsettling at first. this was the man whose footsteps i had literally followed in as we rushed down the basement halls of Massachusetts General Hospital, following the stripped lines on the tiled floor to the Baker and White buildings as he was on-call as a surgical resident. this was the man whose bedside manner i'd observed over and over again as he comforted anxious patients awaiting surgery or recovering, who greeted everyone en route with the same level of respect whether they were sweeping the floor or his supervisor. this was the man who was always impeccably dressed and prepared, white coat pressed, hair combed, who read the chart before entering each room and had a note card for each patient in his breast pocket with updated data written with a gold plated fountain pen. 

my dad was of the generation of physicians where the history of present illness and the physical exam were the keys to diagnosis. the labs and imaging were supportive evidence- yes, essential, but a truly good diagnostician, as my father was, knows which questions to ask, and how to push on the body and listen to it's reply to know what is wrong. he was of the generation when a resident really was residing at the hospital- he was on call every other night on his general surgery rotations. this was how he learned to hear and know illness, to respect the body's working and timing and how rapidly things can fall apart. as the science progressed over the years, i believe the art of medicine has had a hard time keeping a float. my dad was a man of both.

in march, during his 3rd hospitalization in 4 months, i flew down to be with him and he told me he was done. he didn't want to come back to the hospital, the next time he got sick, we was ready to die at home. i did the typical things, like made sure he was oriented and fully alert and understood what he was saying. i reviewed several scenarios and their outcomes and how he would likely recover from many things after a relatively short stay in the hospital. he was clearly understanding and he was clear in his wishes as well. during that stay, at a top rated hospital, he saw 4 different nurse practitioners in 4 days.  i don't believe he ever saw a doctor once he reached the floor. people were nice, but causal, not introducing themselves, often not knowing what meds he was on, misspeaking about his diagnosis and data. if anything they talked down to him like a little old man, no one asked about him, so no one knew he was a brilliant surgeon who had changed the way breast cancer is treated, who ran international clinical trials, who ran a dept of surgery, who treated everyone he met with kindness and equality and respect. in those 4 days he never received a shower or a bed bath, he didn't get a his sheets changed or bed straightened and he waited long to get assistance to go to the bathroom. this man who had spent his life committed to caring for others when they were sick, was not given that courtesy when  he now, at 83, was sick. i couldn't help but wonder if that was why he decided he was done? is this what has become of medicine?

'kris i know that i don't want to come back here and then end up at rehab for a month and then back and that revolving door- i want to go be with Jesus the next time i get sick.' 

'ok dad, then i think you should be on hospice so you can get the care and support you'll need.'

'i agree' he said. 

he left that stay, as predicted discharged to a rehab for a month where he was fairly miserable and in the meantime, we arranged for him and my mother to move from independent living to assisted living, with in their current community so they'd have more help, and we set him up with hospice. 

in may he turned 84. in june my mom turned 80. they adjusted to life in assisted living with more supports then they thought they needed, rejecting much of what was offered. my dad continued to lose weight. he became quieter, didn't call as much and sometimes his answers to questions or his comments were just slightly off- his dementia was worsening. 

i began to feel like large parts of him were already gone. how do you grieve someone who is still here?

but i realized, it felt familiar.

zoe.

this bittersweet longing. this feeling of being out in a scented meadow at sunset, where you want to hold on to the warmth of the day for a bit longer, to the light, but something also feels very sad, lonely, off.

i adore zoe, i cherish her, who she is. and i also grieve the 24 year old who she is not. all the milestones that she has missed- i have grieved them while loving the girl she is fully. both and.

so i am acquainted somehow with this strange type of grief, it's a guilty grief. 

but now, my dad is gone. and we are left to fully grieve. 

he waited until his 60th wedding anniversary- a true gentleman. he celebrated and had a dinner out with my mom and aunt and uncle and my sister and her family and then next morning, he didn't open his eyes, he barely spoke, he didn't get up, he didn't eat. he was done. he wasn't in pain. but he was dying. 

i got on a plane and over the next 72 hours i watched as the life slowly left him. it's a strange thing watching someone die. the spirit almost hovering, lingering. it felt liminal. we sang and cried and we prayed. we told him how much we loved him and how much he meant to us, how he had impact. my mom retold stories about their travels, their first date and what a wonderful life they had had together. we told him he had finished well and was free to go, that we would be okay. we cried some more and we told him we were there with him. zoe called and sang him a song from cinderella. she called about 20 times asking "is he dead yet?" in the blunt way that only she can. and we waited. 

it was a terrible kind of waiting. we held the tension of two opposites - wanting him to go to his heavenly father and not wanting to completely lose my father. an impossible situation. knowing that to end his dying, will mean our complete  earthly loss of him. trusting we will see him again. missing him already.

and in the one moment when no one was in the room, we heard one last gasp, rushed to his side and he slipped away. the spirit left. there were 4 of us. our leader was gone. the waft of slightly turned lily's and roses from their 60th wedding anniversary bouquet still filled the apartment. it was 3:30 on a sunday. 

once again, my father has gone before me. death i suppose feels less unknown, less scary, and we will gather together to create our new normals as people do. losing a parent is like losing a part of yourself. they were a part of you before you even existed, i am flesh of his flesh. a part that shaped me, formed me, gave me life and poured themselves into me, teaching, directing, correcting, nudging, asking me to pause, questioning, giving a thumbs up, years and years of investment in who i am, is now gone. i am left with myself and my memory of his words to me, his stories, to carry on his legacy. 

we will gather next month to memorialize him. for now, i sit in thanks for the blessing of my dad.

 how many times have i packed up and left here? how many times have i said 'goodbye'?

each time leaving a bit of myself behind. i wonder what the ratio is now? how much of me is where. 

when i am in uganda, i feel like i make sense in a way that doesn't make sense, and yet after 1 week, it's time to go home. 

all the reasons we left 2 and a half years ago are calling to us from across the ocean. my dad is in the hospital, zoe missing us, jude comes home for his winter break next week and bryn and rose need to get back to school. and on the list goes, but what a week it was.

we spent the first night in our old home in mukono on campus sleeping in our old rooms, waking to the sounds of the most familiar birdsongs. 

the next two nights were a lakeside camping reunion with our group of close friends who shared life with us in kampala for years.

then mike when north to gulu for 3 nights of master planning work and the kids and i stayed in kampala. i taught a class at the medical school and met with my old colleagues. each night we shared dinner with a different family friend. we went downtown to the marketplace and bought fabric. we went to our old food market and saw the people we know and who know us in a way that we still don't have in the US. the kids went to school and spent time with their friends after school - reconnection is a blessing and a reminder of how hard life as a TCK is. 

then yesterday we visited with roses birth parents. a beautiful emotional exhausting morning that i wouldn't trade for the world. then a hair cut at my favorite place, followed by dinner with friends at an ethiopian restaurant we love. a dusty walk home in the warm night on roads we've walked for years to sleep under nets with the sounds of loudly chirping frogs.

tonight we fly.

it's hot and green, dusty and familiar and i suppose it always will be. oh uganda how we love you. 

 i revisited a dark season this week by accident. 

memory is remarkable. only a sliver will land us somewhere far away and long ago. i'm surprised i'm surprised actually- i should have seen it coming, but i think i assumed that because i was at work, because i was in my place of profession, wearing different hats then "mom", i would be safe from revisiting the trauma. that my role would serve as a boundary and would give enough distance to keep me from identifying, from imagining, from remembering her in those rudolf fleece pajama pants being tranasported to a locked autism crisis unit. 

but there i was on a locked crisis unit with a young person with autism in crisis and it all came flooding back. all the complex emotions. 

i remember zoe's pacing, her agitation, confusion, fear and her repetitive statement, "there must be a terrible mistake, this must be a terrible mistake." for how else could we be here? how else could things have ended up like this- with no other options but to fly across the world just the two of us, the rest of the family back in uganda, to try to find some help, some medications, some supports to calm her brain, her nervous system, her emotions. 

zoe means life in greek. and zoe is so full of life. there are so many things she loves, and so many parts of her person that i love. she is so much more than how she appears. she can seem simple and rote, but there is so much inside of her. she remembers the names of everyone who means something to her - the workers at trader joes from when she was 4, kevin who fitted her eyeglasses a few years ago, the names of everyone's pets. she can differentiate the different riffs from a disney movie and tell you which scene it's from if you hum it. she is direct to a fault and will tell you if you have wronged someone even if it was 20 years ago, and she will expect you to apologize. she loves to be tickled and she loves to tell jokes. she is a victim of her own "sticky thoughts" and tries not to let them get the best of her. she hates vacuums and loud sounds and babies crying and can't stand jeans or tags or tight things touching her. she makes me laugh and she has made me cry and i stand baffled by her often, trying to understand the inner-workings of her mind, but she is a light where ever she goes and she makes my world bigger.

as i read through this persons chart as one of his doctors, i saw his years of struggle, his diagnoses, and his humanity. all the things he says, what he likes to do, and eat,  and what he loves. the picture grew of this person, who like my daughter was a few years ago, is now, in crisis.  as i read, i knew that right on the other side of the wall from my office, he was having a version of zoe's rudolf fleece pants moment. he was trying to process, in whatever way that could be for him, that he was now in the crisis unit and that has to be scary. new people, new place, new everything and for people with autism especially, that's very threatening. 

i remember when zoe and i first arrived at the psych ER and we landed in a yellow locked windowless room, she instantly calmed down while i felt totally ramped up. i hated that room, i felt like i was being punished, no windows and locked. but for her it felt safe and devoid of stimuli. calming. no threats. just me and her and a mattress on the floor. secure. i was fascinated and i remember in that moment realizing that i didn't know what was best for her, i was too close to her, i was thinking as if it were me. i had to try my best to see things from her perspective.

when we got to the autism crisis unit and she was pacing in her fleece pants behind another locked door, a door i couldn't pass through, i was sure this had gone too far. i remember changing my mind after that locked door shut behind her. i ramped up. i panicked. i found the staff and told them i didn't think i could do this, maybe there had in fact been a terrible mistake, maybe i should take her home. the staff calmly asked if i thought i could handle her at home? did i think that was the best thing for her? i said "no" and "no". then, he said, you have made the right choice and you should leave her here with us. she'll be okay. i wept the whole 45 minute drive home in the dark on those wet windy new england roads and i cried out to God. i told him he had better have her in His hands. that this better be the right thing. that He better keep her safe. they weren't really threats, there were just groans of desperation.

when i got home i took a shower and got in bed and i called the unit and asked to speak with zoe- i was so afraid. afraid she'd be furious with me. afraid she'd beg me to come get her. afraid she'd be catatonic. the staff answered, "oh hey, zoe's doing great. 'zoe your mom's on the phone!"

  "hey mom. we are watching a movie. yeah, i'm fine."

i didn't think i had anymore tears, but i did. tears of such deep gratitude. she felt safe- again. after feeling so out of control with herself and her world for so long, being on that unit, locked and with other kids in crisis, actually felt safe for her. thank you God.

back in my office, we met with his parents and our team. his parents have been on a long journey, one that i know and share parts of. i could feel their love and their hope for their son. i know those feelings so well. i have sat in those meetings and been the one on zoom being asked the questions, entrusting my child to specialists and carers and hoping and praying that they will care enough about my girl to care for her as closely as possible to how i do, but knowing it can't be the same. as i listened to my team, i was reminded  that part of this transition for him is learning the boundaries so he feels safe. reminding me of zoe, and how she felt secure when she was removed from her typical life when life became too much. knowing that this unit is a place for him to get the help and support he needs to be able to live his best life. to get to his light, to make his world bigger. 

yes i revisited the dark season, but i was reminded of the light.

 and just like that there are two left. 

what a strange thing, raising children. they leave and it's kind of wonderfully awful and awfully wonderful. it's the goal after all to help them become independent individuals but just when they do and they go through all that teenage drama - stretching and pushing against you and pulling into themselves- they come out lovely and promptly pack up their things and leave you. 

it has been a strange summer. jude was away at camp in a leadership development program and so he was sort of already gone, but as the time time grew closer for us to pick him up, do laundry and pack up for college and drive him half way across the country, i found myself crazed. i was running around with his suit in my car, trying to find a dry-cleaner. i was worried he didn't have enough underwear, i was 'nesting' for his leaving. i think i needed a second maternity leave to prepare for his going- legit- it's actually harder in some ways then preparing for his intial worldly arrival.

i'm still in illinois, i haven't even gotten to the absence. we just said goodbye. 

in reflecting on this man-child, all 6 foot 9 inches of him, i see all the stages of jude. he wasn't little for very long and in some ways he was born an old soul. as a child  he was always kind and generous and very clear in what he wanted- he is not complicated and doesn't make things complicated. if he was upset, he was either hungry, tired or occasionally afraid, usually of something new. 

i released him long ago. it wasn't in a bargaining way with God, it was done freely with a deep knowing that he was his own, and he was of God and that i was just entrusted to do my best with him and painful as it was, it was a great gift for all my children. in his infancy, when we found out he had a brain tumor that was inoperable, there was nothing to do but pray and we did. it was a prayer for healing and it was a prayer of release. i had asked for 5 years to get pregnant and i finally had, a prayer answered, and just like hannah in the bible, i was going to acknowledge that my baby belonged to God- no matter what. and God gave us the grace to experience his full healing and also to keep ourselves from a sense of ownership over him and really over any of our kids. 

they are themselves, not extensions of us, not to fulfill things we failed to, not to represent us. they are themselves and hopefully very different from us. 

today i thought i would cry but i didn't. i love this kid (all my kids) more than anything on this earth, but i'm not sad, i'm so happy. he is right where he wants to be. there will be challenges, and there will be support and growth. he's got this.i'm so proud of who jude is, of the kind of man he is becoming. i will miss him for sure and i look forward to his next trip home and to hear about his world that now spins on with out me in it- what a beautiful thing!