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.