inspired by ::one good thing::

view from ellie jane's PICU room . july 2010

so this post is really about my shop...well, not exactly...

this post is really about this idea i have about how to give in a one specific way this holiday season...and how one story inspired me...but there are some things that lead up to it all that i really want to tell you...so please read on:

jon and i have been trying to figure out how to give to others this holiday season as we sift through the bills from ellie's surgery and continued care, my surgery and ellie's birth, and millie's surgery that are stacked in a not so small pile on the kitchen counter. as i was thinking about this over the weekend, we received a few calls asking us to donate money to various children's charities. there is always a story that the caller begins to tell, and for the last few weeks, i find myself stopping them and saying something like, "actually, we kind of are one of those families right now, so we won't be able to give this year." i feel so odd saying it...as though it is some excuse...but then i realize that it simply is the truth.

this year, i have sat in a doctor's office, holding my five-week-old daughter while her doctor explained that we must leave for the PICU (pediatric intensive care unit). right now. and we cannot stop for anything from home. she will meet us there in 20 minutes. and then she will be using a defibrillator to try to get our daughter's heart, our five-week-old daughter's heart, to find its way back to sinus rhythm. and then it didn't work. and then the fog rolled in completely. except for my head. my head stayed out of the fog because my brain had to work in order to understand and make decisions and sign papers and hope...

and then we did it all over again when a surgeon cracked open her heart in order to repair it.

i keep thinking about the PICU. i keep thinking about how the fog rolls in when you are watching your child unconscious in a very small little bed hooked up to machines that you only knew about from watching er and grey's anatomy...i keep thinking about how the fog rolls in to provide you with a very clear path for moving forward. one breath. one decision. one moment. one prayer. (please.) repeat repeat repeat.  

i keep thinking about the woman in the restroom at seattle children's the day after ellie's surgery. i walked out of the stall and began washing my hands. she was putting on makeup. it was maybe 6 AM. she saw the badge that identified me as a parent. she was wearing one too. she wanted to tell me her story. honestly, i didn't want to listen. ellie's first hospitalization taught me not to look anyone in the eye and just walk to and from her room. i do not want to take on your story too was my unspoken wish. i cannot nurture you. i cannot be a sponge and be there for my family. i cannot help you. my daughter is not okay. please don't ask me one question. but here was this woman telling me that she printed out huge photos of her daughter and put them on the walls of her PICU room so that the doctors would see her as a person and not this unconscious teenage girl who had been flown in from alaska. "she is a real person who laughs and plays soccer," she told me. as i type this, i am right back there in that moment. trying to breathe (right now, i try to breathe) as this woman told me her story and then waited as i shared just a few sentences of ours. "only four months old?" she said. "yes." "i am so sorry," she said quietly as she reached out to hug me. me too. for you. for me. dear god why does this have to be the way it is for families. why. 

i keep thinking about the taste of the oatmeal cookies in the cafeteria. both children's hospitals ellie was in had them. they were the only thing that pushed me out of the fog for a minute and reminded me that i had senses. 

i keep thinking about the parents of children who are in the PICU right now. wondering if their child will live to see her first Christmas. wondering if they can make it through the next minute; knowing they must because this is their one job right now: get through the next minute and the one after that because they are their child's voice. i keep thinking about those parents who have been awake for hours...who don't have their toothbrush or clean clothes for tomorrow or someone to hug them. i keep thinking about those parents who are standing at their child's bedside hoping...praying...breathing through that fog.

*****

yesterday, this kind of perfect storm happened that brought me to this place where i am now writing this post. i was up early and watched the news while ellie was sleeping. i wanted to weep with each story of how we are hurting each other in this world. i decided to pound the words "seek peace" in metal that would become a necklace as my voice in the midst of that hurt. 

then i noticed a link to a blog post that a friend from high school had posted on facebook. i clicked. and i found myself reading about hudson. i found myself reading one woman's brave truth that she is writing as she walks the path of grief after her one-year-old daughter died earlier this year. and reading about hudson and her mama's wish that we do "one good thing" in honor of hudson's birthday this week deeply inspired me.

because here it is: i have dipped my toe in this world that this woman lives in. just dipped my toe in it as i watched the doctor use the defibrillator. as i waited for the pager to go off with updates throughout the surgery. as i stood outside sobbing when no one would explain why the surgery was taking hours longer than we had been told it would. as i take my daughter to the cardiologist each week. i have just dipped my toe in the world of the fear of the possibility that my child would die because her heart just couldn't do it anymore.

and reading mandy's beautiful words about hudson inspired me to have this idea:

instead of offering a discount in my shop this holiday season like i had originally planned, i am going to take 15% of the profits i make from items in the shop from today until the Solstice (December 21) and donate that amount to the PICU at Mary Bridge Children's Hospital. this is the hospital here in Tacoma where Ellie spent five days in July. 

and, instead of offering a free soul mantra necklace with purchase, i have put the "seek peace" necklace in the shop and will give all the profits made from that necklace to Mary Bridge. (i have enough supplies to make quite a few seek peace necklaces over these next few weeks.)

and when we donate the money later this month, i will let them know it is:

in honor of Hudson.

in honor of our friends whose children have died

in honor of the families we do and do not know who won't have one more day with their child

in honor of each day we have with Ellie Jane

*****

thanks for reading...i honestly didn't expect to write this much when i came to this blank screen earlier tonight. in some ways, all that i have written feels a bit dramatic. but this is our life. and instead of making this a shorter post or edit out the parts that seem like too much, i am going to let it be what it is. because as you read my words, you are helping me heal. because maybe someone who needs to know they aren't alone will read these words. because sharing our stories matters.

thank you for all the support you give me...give us...through your words and prayers and orders and emails and thoughts. thank you for seeing me.

just like that

this spot once held the beginnings of a steam-of-consciousness post. a post where i began to list in sentence form the reasons why the post would not be full of sparkles or something that would make you smile. how it would instead be full of truth and realness and sadness. there is so much i was going to say in that post.

but life kept interrupting. repeatedly. every few words. 

so in this moment, i come to this spot hours later and will say this instead:

millie, our other child who happens to be a golden retriever, almost died friday. just like that. the doctor was not sure she would survive the night. she then had emergency surgery saturday. and tonight, she is curled up beside jon's feet while he grades. just like that.

on friday afternoon, when ellie and i drove to the emergency vet clinic, a few minutes behind millie and jon, i explained why mama was crying. telling her that sometimes we cry when we are really afraid. explaining how mama loves millie very much and how she is my friend and how in my love for her, the thought of her dying made me scared and sad. and then i explained how millie has been my constant companion through some of the darkest days i have ever known. how she came into our lives in a very unexpected way and, just like that, she began to walk beside me through the deepest grief i have ever known; she began to walk beside us and taught us even more about love. i explained that this is what love is all about.

tonight, as i try to wrap my brain around having another patient who is healing in the house and now two notebooks full of feeding/medication schedules that sit side by side on the kitchen table, i find myself wishing upon wishing for a break from it all. wishing upon wishing for someone to walk through the front door and say, "i've got it right now girl. you can just rest for a while."

tonight as i type this, i take a break and turn to david whyte to try to remember the truth of what i know. his poem "the well of grief" does that for me. those words remind me of what i know about the truth of standing in this moment on my path. the truth of choosing to see all of it. the truth of living with my heart wide open.

tonight, i take a break for just a few minutes and turn up joshua radin as he sings into my ears and close my eyes and choose.

i choose.

i choose.

a bridge.

in a front yard in south carolina . march 2009

last night, i was thinking about how you asked your daughter to bring you the other picture. not the one sitting in your room from the mid-nineties; the one i love; the one where you two are sitting with your rounded middles, hats people in their seventies wear upon your heads, and the sun in your eyes as you look right at me as i snap. no. you wanted the other one. the one where you sit side by side on the cusp of a life together. the one where you look like movie stars to these eyes of mine that never knew you then. you wanted to look at the woman you fell in love with.

when your daughter would call daily to check in and ask what you had been up to, sometimes you would say, "oh i'm just talking to her again."

i think of you in that little room i never saw, the little room that became your whole life for your last few months. i think of you looking at that photo of her with her eyes a-twinkle with all that is to come. i think of you sharing words you never told her when you could have.

i hear you asking me to tell her how much you love her as though my saying it aloud on a day in april in 2005 before a small family grieving would make it more real. as though she would hear me when she couldn't perhaps wouldn't hear you.

i wonder about what photograph i will want next to me in a room that will be my last room. what photo will i want to talk to and sit in the quiet next to hoping for any whisper of a response.

*****

we are in the midst of this new bridge in the middle of spring. this bridge of a bit more than two weeks in length that walks from his death to hers. i think about this day five years ago when they said she was in the hospital but i shouldn't come just yet. even though the weekend i spent at my yoga training gifted me many insights then, the heart inside this chest wishes i could blink and find myself saying to my mother, "i think i will just move the ticket up to sunday. i am just going to go. i will meet you there." 

and i would rent a car at the little airport near their home and stop to get flowers and something to read aloud to her. and i would not worry about what i had packed or the training i was missing for a new freelance job or what was going to happen if she didn't make it or how annoyed she was going to be with me when i walked into her room. i would just drive to the hospital. i would just drive to the hospital and hold her hand. and she would still be breathing.

*****

i remember thinking spring was laughing at us as her outward flashy colors seemed to mock our grey, lost faces. but then i walked outside to the brick patio and remembered how much she loved this time of year. her favorite time, when mother nature unfurled her very best in the form of azaleas, dogwood, redbud, tulips, forsythia, and how the list goes on. when we drove to the funeral home, i looked out the window at all the colors arching toward the sun...knowing if she was here, she would not be able to stop herself from commenting on how they all seemed to bloom at once that year. 

and they did.

while my heart was breaking solidly in two, every shoot of green stood almost at attention in a way she would have loved.

and i am guessing, five years later, those reaching toward the sky blooms are doing it again in south carolina. although neither of them is there, although i am not there, to witness. spring is dancing with her arms outstretched toward all that is to come in the next minute, day, week.

*****

in my corner, spring continues her slower dance, each week unveiling a new bloom, a new bud, a new green shoot peeking out. and this quiet swaying brings another bridge toward the arrival of another soul who will change my life forever, break my heart, and mend it with every breath.

in this moment, how i wish you were here to witness all that is to come.

singing to remember.

 

south carolina spring . april 1, 2009

a year ago, when my grandfather died, i listened to alison krauss on my ipod on repeat throughout our trip to south carolina. something about her voice, the harmonizing, invites me to feel at home, invites me to feel safe.

the song "i'll fly away" makes me think of my grandfather now. i think about him saying his last words...drifting off to sleep while my mother and aunt sat beside him...and in the wee hours of the morning i believe he heard the sounds of the loons harmonizing as they called him home...

tonight, i found myself pulled to listen to alison krauss. i harmonized along with her and felt the space around my heart crack open just a bit so i could breathe a little easier on this day. as i sang so loud with my headphones on and my body moving to the music while working in the little room, i found myself remembering what i know to be true. and i found myself resting softly in this remembering.

the stories...

 

a new (whispered) soul mantra in my little shop

last sunday, a dear friend was visiting and we were talking about how much has changed for me during these last almost six years of living in the pacific northwest. she has known me since i was 14, and then we were colleagues in my job at the boarding school back in indiana. she knows that i was not my most happy, real self while in that job. she asked me about what changed when moving here.

being in a new place was a big piece as i tried to find my way...but part of this internal awakening came as i sifted through the grief that came into my life about nine months after we moved when my grandmother died on the heels of my first golden, Traveler, dying of cancer. my heart cracked open as it seemed to break in two when i found myself in a funeral home in south carolina facing the truth of this first walk into deep grief. last sunday, i said to my friend, "i learned what love really felt like in that moment." we talked about the relationship that i had with my grandmother and how she really did have such a challenge showing those she loved that she loved them, yet she found her way to show me. i know that her love shaped me so much as a person, yet i am saddened that, from my perspective...based on the stories shared with me, she did not often find her way to show this side of herself to others in her family.

i said something to my friend about now i find myself pulled to tell her story...to tell the stories of all the women who came before me. and, at this point at least, i don't mean the details of their stories...i don't mean the specifics of a family's journey. no. i mean that as i share my story...here, with my friends, at retreats, in my book, through the art i create...as i share my story i am telling their stories because they live in me. literally. they live within me. and as i walk in this life, i am the proof of their love...my mother's, my grandmother's, her mother's, and so on...i am the gift of the love they opened up to in their life...even if just for a moment. and i am here to tell their stories as i walk on this path.

today, this is what i know.

 

i heard your laughter today. it rang out inside me like a whisper from long ago. years now. the last time we talked has been almost half a decade ago. in this moment, i want to tell you all that has happened. i was so lost, searching my pockets constantly for a flashlight so i could find my way. and then, through that darkness, that grief, that fear, i suddenly looked up and saw all the lights around me. some were far far in the distance, but they stood there waiting. patiently. while i just kept going, even when i found myself back in the same place for a bit. i would tell you about how i one day realized that the lights were not only surrounding me with their guidance and truth and love, but that the light lived within me. within me. and i knew i would never again be alone. did you learn this truth when you were here? how i wish i could tell you. how i wish i could invite you to stand in your light and know. in this moment, i sit here with this truth within my heart while another light within me grows and twirls and beats each day, waiting. and when she arrives, i will teach her this truth. maybe i am already teaching her. i will teach her about the light within her. i will tell her about the light grief gifted me. i will teach her about the day i thought i was never going to find my way and then i looked up. i will tell her all that you teach me even now. even now when your laughter is...even now when you are...a memory.

a gift (found inside the missing and wishing)

backyard dogwood, south carolina . spring, 2009

for the first year, all i wanted was one more day, hour, breath, second. i just wanted to pick up the phone and hear her voice say, "hello" in that funny, "i'm so glad it's you" sort of way. as my brain tried to train itself to realize that i would never see her, hear her again, my cracked-open heart tried to remember to keep working.

this is a piece of what my first experience of the path of grief felt like.
the wishing. the missing.

*****

this march was the first time after her death and the last time that i would visit the home away from home that was my grandparents' home. trying to soak up everything while standing on another branch of the path of grief was difficult. i took a lot of photos, but i wish i would have taken more. i wish i would have written while sitting on the backporch. but when a family gathers for a funeral, there isn't much time to take it all in. and then, in the weeks that followed, the "settling of the estate" began. and as a grandchild, i did not have a role. which i understood intellectually...yet, this was my home away from home...a home filled with unconditional love that i had experienced...even if this might not have been the experience of everyone.

my mother would call and we would talk about "the list" of "stuff" and what we might want.

and as i would look at this list of "stuff," the feeling began again. i want one more minute. i just want to tell her all that i have learned. i want her to know this me, this me that grief has birthed. i want to ask her so many questions. i don't care about any of the stuff, i just want her. i just want her.

during this time, my mind kept turning around this phrase: all that they were became a list in a word document with a total at the end. all that they were. all that they were.

the missing became the drum of my heart yet again.

*****

weeks later, the boxes arrived at my mother's house. a lot of boxes. the journey she has been on to go through them...the journey that is not always about missing in the same way my journey is. a child's grief, so very different from a grandchild's or a friend's.

a few weeks ago, she sent two boxes full of some of the things from that house. being sick for several weeks, and some other things that have made life a bit fuller, made for the realization that i didn't quite have the energy to open the boxes. i didn't want to sift through the feelings again, and i didn't want to uncover new ones. i just walked around the boxes and stacked things on top of them.

*****

alone in the quiet saturday night, i found myself noticing those two white boxes and wondering. as i lifted out sewing supplies, linens, odds and ends, i began wishing i could ask her about the seven days-of-the-week embroidered towels and the odd beginnings to a pillow and the red "happy time" harmonica. 

the wishing. the missing.

in the second box, under a few other things, there was layer upon layer of bubble wrap around a box. as i began to unwrap it, the quiet mingled with the scent of her.

the jewelry box that had sat on her dresser for decades. the jewelry box that had sat there as she put on her makeup, sprayed her perfume, decided which pair of clip-on earrings to wear.

the jewelry box soaked up that perfume and makeup and pieces of a life; it soaked up the scents of that life, her life, and they settled in. as i opened that box, the scent swirled around me and i closed my eyes to remember.

the little girl visiting her favorite people and sleeping in that room. supposed to be napping, she peeks inside that box, lifts the lid of a compact, opens the bottle of perfume and breathes in deeply. the little girl sits on the stool in front of the dresser and looks in the mirror wondering what it might be like to be old enough to wear this perfume and use the pencils and brushes. the little girl who feels so at home in this room, who feels so loved in this room. the little girl who is the woman who remembers this love. this woman who takes a breath and deeply misses.

the jewelry box that was on a list that became part of a decision. the jewelry box that was wrapped up and put into a box and then another box now sits inside this home on another coast, part of another life. the jewelry box that became another step on the path as it became the gift of one more minute, one more second, one more breath.

the gift of one more breath.

(thank you)