the beauty of loss

I share these photos because even in our heartbreak and loss we saw the beauty and we want you to as well.

The evening before Andy died there was a song circle outside our bedroom window.  Beautiful voices of friends and family helping Andy find his way.

And in the morning after he passed we lovingly prepared our cabin to hold his body for two days and our farm to receive visitors to say goodbye.  An around the clock vigil was set up with friends and family taking shifts sitting inside the cabin and also outside at a fire that continuously burned.

And then food arrived and tents to protect from the rain and so many children and friends.  In the midst of deep ache there was comfort in our surroundings.  The girls and I walked many times from cabin to fire to house and back again.  Always held.

And on the last morning the beautiful box that Andy’s dear friends had built arrived and we placed him in it with cedar and pine and so many beautiful flowers and small tokens of love.

And as the children sang and collected more flowers his body was carried up the hill behind our house to the place his dad and brothers had dug one shovelful at a time.

And beautiful words were said, and another song was sung, and we took turns tossing sacred earth into the hole. And we stood in a circle and looked inward at each other and recognized that Andy was now there in each of us, and we turned outward and looked beyond at the greatness of nature that is now Andy.  And then out of nowhere the fawn appeared. 

Our hearts have much healing ahead but please know that each and every one of you who has held and supported us will never be forgotten.  Your comfort is felt.  We love you so.

Andy

Dear Friends and Family,

Andy passed peacefully and quietly this morning right around 8am.  He loved the mornings so it was no surprise he chose that time.  He was surrounded by his girls and me, his parents and two very close friends.  It rained quietly all night and this morning was fresh and full of beautiful bird song.  It was a morning he would have loved.

There will be a gathering to say goodbye tomorrow, June 21st from 1pm-6pm here at our farm.  Friends and family can come to visit anytime during those hours. (S3873 County Hwy H, Hillsboro, WI). 

We will also have a celebration of Andy’s life Sunday, July 29th at the Kickapoo Valley Reserve.  More details to follow.

Thank you for all your love and support.  If desired memorials may be given to our family, per Andy’s wishes.

With so much love,  Jonel, Iris and Elsa

this new year

Christmas in Miami was different but delightful.  Elsa got the bow of her dreams (made by Andy), the Gorrill’s visited and it was so great to have family and we spent Christmas afternoon on the beach with new snorkel gear! Sadly, everyone left the day after Christmas and it was back to business with the start of the second drug in Andy’s chemo combo. 

Things did not go as we had hoped.  Andy started the new medicine on Wednesday and by Friday was feeling pretty fatigued, spacey and overall not well.  Saturday am found him weak, almost passing out, so I called 911 and tried to prep the already freaked out girls for the arrival of the EMT’s.  Iris, understandably, worried aloud about all the terrible things that could happen, while Elsa made herself a waffle and ate it (different kids, different coping).  Andy maintained consciousness (thank god) and the EMT’s arrived calmly and without sirens (thank you, guys).  They were big intimidating Cubanos who couldn’t have been sweeter and more kind.  One guy sat next to Iris and talked to her about how scary this was, how strong she is and gave her a fist bump on the way out the door.   Then we followed them and Andy to the emergency room.

When you move to Miami and your in-laws have gone home and the next friends haven’t arrived and you know no one, well, the kids get an intimate look at the inside of a big city emergency room. 

Andy’s vitals checked out normal at the ER, but some of his blood levels were off a bit and because he is on a clinical trial they have to monitor everything and the ER nurse looked at us kindly when we mentioned going home and said “don’t get your hopes up, honey”.  Sure enough, 2 nights and 3 days later we emerged, exhausted and worried but mostly the same as when we went in.  We don’t really know why Andy got so weak and woozy or why his blood levels (kidney function) aren’t where they are supposed to be, but we can only assume it’s the drugs causing some havoc. 

Andy is back home now and feeling still tired but not at all weak or woozy.  The girls watched more media than I’d ever be comfortable with under normal circumstances, but when your dad is in the hospital and HBO is running a Harry Potter movie marathon and the hospital has HBO, well screw screen limits (and also screw healthy eating and bedtime and changing your underware).  At one point when they weren’t glued to the tube I did debrief the chaos with them and I think they are ok.  Because what they witnessed was super scary but also empowering.  Because people were kind and competent and their mom held her shit together and so did their dad (of course) and actually so did they.   And now we know what it takes to call 911 and go to the hospital in an ambulance and spend 4 hours in the ER and then 3 days in the hospital in a crazy city with traffic and sky scrapers and palm trees and nothing familiar and no friends or family to help.  Dang, we rocked that thing.

In seriousness we are still freaked out.  We don’t know what any of this means.  If Andy’s body is revolting and not tolerating these drugs, he might not be able to stay on the study.  If it’s not the drugs and it’s the cancer causing problems, well that sucks even more.  We’ll be back at the clinic tomorrow for more testing and to talk with the study doctors and hopefully get some answers. 

And by the way, 2018…NOT FUNNY!  

Wishing you all a happy and healthy new year!

miami

We spent the last 3 days in Miami.  It was a whirlwind but we were able to meet Dr. Wilky and the team that will be Andy’s new set of docs as he enters this next stage of treatment.  It was an energizing experience for us.  Everyone was super friendly, we found the city fairly easy to navigate, we were blessed to crash with a childhood friend of mine whose hospitality was over the top, we got to stick our feet in the ocean and we found a safe and lovely place to rent (with so much gratitude to the incredible supporters of our on-line fundraiser).

At one point in the whirlwind Andy turned to me and said “I feel like we are in the right place” and that was all I needed to hear.  So onward.

We are back home now for a short time.  Time to pack, and secure our farm and animals, tie up loose ends, and try to remember all the tiny details that will make the relocation smooth for the girls.  People often ask us how they are doing with all this.  They are strong and resilient girls who are freaked out about leaving their beloved cozy home but who have a sense of adventure and love to explore new places.  Sometimes they can’t wait to go, sometimes they are in tears about leaving.  We feel the same.  It may be a bit of a bumpy ride for the next month until we find our Miami groove (I’m counting on there being one) but we’ve got our seat belts fastened and I know to secure my own oxygen mask before assisting others.  We are on our way.  Love to you all.

why we march

 “My Nonna stands with me.”

We went to Madison on Saturday (along with about 100,000 other people) to join the Women’s March. 

But I have to say, I waffled.  I waffled about taking my children.  I worried about protecting them.  Protecting them from words they don’t yet know, from ideas that haven’t yet occurred to them, from images that might be upsetting, from angry people on both sides of this issue.  They are smart, strong, independent girls and why should I let them think it could be otherwise? 

Because it still is.  Maybe not so much for them in this protected home and circle of family and friends, but they’ll go out in the world.  They already do.  They look at pictures in National Geographic and ask questions about little girls who have babies, they wonder aloud how it could be that the USA has never had a women president, they are super interested in reading about civil rights, and right now they don’t think it’s odd for a man to love a man or a women to love a women. They don’t know that calling someone “gay” can be an insult, but they do know that hearing their friends, who don’t know better, saying “you throw like a girl” can crush their hearts, even if they don’t know exactly why.

Andy and I want them to know that they come from a privileged place, and from that place they can help better the world for girls who don’t have the safety, the respect, the education that they have.  In this country or others.  We want them to know that it hasn’t always been this way, it might not always be this way (we are more concerned now than ever), and that standing up for yourself is important.  In class, in a dark street, in a relationship, in a job, in life.

So, I chucked my reservations about going and a few days prior to the March, we talked about protests, we looked at some pictures of historic marches, we talked about why people protest, where you can and where you can’t, and we made signs (they loved that part).  And then we went.  And I was so glad.  None of my fears came true.  The whole atmosphere was buoyant.  We were crammed shoulder to shoulder with thousands of other families, kids, parents, grandparents, students, of all colors and genders.  Everyone was kind, everyone was smiling, you could feel the solidarity pulsing through us.  The kids felt it too.  Out of the corner of my eye I saw Iris chanting along with:  “Show me what democracy looks like!  This is what democracy looks like!”  and she’s not a kid to jump in to performing unless it feels real.  They were dancing and holding their signs high and drinking it all in with wonder.  We felt part of something big and important.  Because it was.

And then we came home and the next day at lunch we talked about, “now what?”.  The girls want to continue to do things to help voice our discomfort with the current political environment.  They understand this is the world they are inheriting.  They want people to be kind and good.  They want to be respected, they want others to be respected, they want the nature they love to be protected.  And so we started:

If you are so inclined, we hope you will join us.  It’s only one small step, but I’ve always believed that each of us makes a difference.  And we are raising girls to do just that.  Check it out here: https://www.womensmarch.com/

year’s end

Some scenes from a happy holiday.  Old Lily kept us home from visiting the Cities (and we missed everyone) but she had enough spunk to open a gift (like always) on Christmas Eve-even if she was beat for days after that.  Many hours of quiet at home turned out to be just what everyone needed.  Some hikes, some snow play, and lots of knitting by the fire.  Time to reflect on a trying but also incredibly beautiful year.

This week we’ll enter the medical system again and Andy will endure tests that will tell us…. something.  It’s easy to tell ourselves stories about what the something will be, but if we’ve learned anything on this trip it’s been that the future is unknown no matter how much time we spend worrying about it.  And so, bit by bit, we try to spend less time worrying and more time being present in the wonder of what is right now.  Visiting with old friends, smiling as your neighbor comes by at just the right time to pull your car back onto your driveway, watching that old dog’s heart working hard as she sleeps by the fire, snapping the last piece into the jigsaw puzzle, and listening to the older one read to the younger one as they wake together in the too early morning.

2017.  May you be full of these moments. Common, everyday, beautiful moments.  For all.

the morning after

The morning after the election I took my camera outside to look for beauty.  It was everywhere.  It bolstered my spirits and helped me feel ready to answer the girl’s questions.

We scrapped spelling and math and for much of the morning I tried to answer their questions about “why?” and “how?”.  We watched a video about the electoral college and the popular vote.  For a long time we talked about why we still live in a world where a woman can work her whole life to become entirely qualified for a position and still lose out to a man who is not qualified at all.  (They can add “glass ceiling” to their vocabulary list now.)

We talked about how so many people; women, African Americans, Hispanics, Muslims, LGBT folk, to name a few, are feeling even more devalued then ever.  And I said, “it makes me want to work harder for equality” and Iris said, “it’s actually kind of exciting, it makes me want to work harder too.”  Thank goodness, because this is surely their work.

We talked about how we don’t always win and how we need to still walk out into the world with kindness and compassion.  We invoked Iris’ recent image of Dumbledore (Harry Potter reference) and how he “always tries to see the best in everyone”.

We watched Hillary’s concession speech and the girls were riveted feeling the power of her words aimed directly at them. “To all the little girls watching this, never doubt that you are valuable and powerful and deserving of every chance and opportunity in the world.”

And I think we left the morning feeling ready to walk out there.  Knowing that this life is a learning experience every step of the way.  And we felt the comfort of each other and of course the old dog snoozing in the sun.

spoon carving

Andy continues his love of spoon carving and last weekend at the Driftless Folk School spoon gathering, the girls got into it too.  It was sweet to watch.  Two days of carving, listening in as the adults talked (and talked) about carving, taking a break to play with friends and carving some more.  On the last afternoon the carvers gathered in a big circle, each with a spoon blank.  Everyone began carving a spoon and then every ten minutes they would pass it to the person to their left.  That went on for over an hour and then when they called “time” you passed once more and that was the spoon you got to keep.  Iris really enjoyed her part in that carving circle and ended up with the sweet heart spoon.  You can see it in the photo of the circle of spoons.

It felt like a great kick-off to the school year.  A weekend of eagerly leaning into learning something new. And now we are also playing math games, making fall art, reading, reading, reading and much more.  It’s so fun to school with these girls! 

The week ahead brings a birthday celebration (10!) and visits with family and friends.  We’ll soak up each moment just like we do these days of late summer sunshine.   Andy is feeling well and our hearts are positive.  His next scan comes soon too.  Amid the worry there is still so much love and joy that carry us along.

where to begin

In honesty, it’s been silent here on the blog for the last couple of weeks because I couldn’t pull myself together. I know you get it.  Andy’s upcoming post-treatment scans had me all tied up in fear, and grief and worry.  I was making my way through days in a fog of mental and emotional paralysis. Trying to breathe, trying to stay focused on positive intention. Mostly just feeling the tightness in my chest closing in.  Trying to find a way to be ok with the uncertainty, the possibility of more hardship to come.  It’s a tough place to be when you feel like you are “almost there”.  On this path there has been great strength and there has been plenty of falling to pieces.  

And then there was Andy.  I can only write of his experience from my intimate but outside perspective.  He has his own set of really hard things to deal with (understatement).  But you should know this:  he is strong of mind and body and dang, that meditation practice is something huge.  

So, yesterday.  Yesterday the scans came back clean.  Clean and clear.  How to take it all in?  How to begin?   It’s everything we’ve wanted and worked for.  We are there now on this path in the place we envisioned, and the path goes on and on and on.  But this moment now, we are there. And we are quietly rejoicing.

But here is hard and honest part.  I feel like if I meet you on the street or at the library or in the grocery I want you to know this: it’s difficult for us to feel total relief and celebration right now. We know we’ve accomplished a lot, truly we have, but we have been in this place before where all is well and we are “watching and waiting”, and then the bottom falls out. That feeling sticks with you.  It’s hard to shake.  The stats on Andy’s cancer are scary. They will be for a long time.  Unlike some other cancers, for sarcoma there is no time frame after which it is less likely to reoccur. It’s the truth. We all need to know it.  And the uncertainly of it all is maybe the hardest part to live with.  Scans every three months unless some symptom “pops up” in between. We’ve got no choice and we’ll find a way to move through our days bearing the uneasiness as gracefully as we can.  We’ve got some good ideas about how to do that.  And your understanding of where we are will just help.

And of course, we are still so surrounded by support, good medical care, our own love, and the amazing good fortune of living in this community of loving friends and family. Andy plans to work harder than ever at all he is doing to heal his body.  We know, from talking with other cancer survivors, that it’s easy to feel lost when you walk out of that docs office (the one who has been offering you TREATMENT for your cancer for so long) and they say to you…”good luck”.  It’s easy to feel like there is nothing more to do but wait.  But we know it’s not true.  There is so much to do.  So much to love, so much joy to notice in each day.  So much growing and becoming.  So much gratitude and discovery.  Nothing will ever be the same.

Where to begin?  Here.

enough

The past few days the kids have been sick. It’s been lots of laying on the couch, stories by the fire, trying to get her to drink tea and early to bed.  Andy and I haven’t gotten it so far, but we know how they feel.  Spent.

Someone recently, understanding us, likened it all again to a marathon.  You know the analogy:  run on adrenaline, don’t feel any pain and injuries during the race, find yourself hurting like hell on the other side of the finish line.

By no means are we at the “finish line”, I know that.  But still some arbitrary line has been drawn on the track.  The end of treatment.  And suddenly what seems like it could be a celebration instead feels like exhaustion and a year’s worth aches holding court in your body and mind.  I think the girls feel that too. 

While I sit with it and try to let it just be what it is, I watch Andy get his carving tools out again for the first time in 9 months and that feels like a little bit of salve for these bodies and minds that have been running long enough.