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.
It’s been difficult to write. It’s hard to come here with what is honest. These photos show some joy and normalcy in the storm. Please know these moments exist too.
In the past few weeks Elsa turned 9. She was supported and loved by so many people. Friends hosted her party, grandparents came, the sun shone and Andy was able to make it to celebrate with her for a couple of hours. She is a glorious girl whose light shines for us even in dark times. We rest in the fact that her spark will illuminate her own path as she grows through all that is beautiful and hard in this life.
And the last month has been full of dedicated play practice for our two. Daily they have gone to Viroqua with a kind and loving friend to put in hours on the stage readying for the big weekend, which is now. I have not seen a wink of it all aside from a few photos sent by friends. I hope to attend the final performance this afternoon to support these hardworking actors!
Andy and I stay home each day. Hours are filled with chores and naps and visits from many friends and family. As you might imagine some days (and nights) are harder than others. We work daily to manage Andy’s discomfort, to provide him restful spaces, to temper our grief by staying in each moment. Andy is on oxygen to help with his breathing, he takes pain medication around the clock, he struggles to eat well, and sleep well and often feels restless. He continues to receive immunotherapy treatment at Mayo, with a scan coming up again in a few weeks. We are unsure what that will bring. We have frequent and difficult conversations with each other, with the girls, with our parents and friends. These conversations bring clarity and relief and loads of sadness.
We have no idea how to do this. We fumble through with as much strength and grace as we can muster. Sometimes that looks like these photos and sometimes it looks like a gaping big hole of darkness. We are not alone though. Not by a long shot. Everyday we are surrounded by the love and support of this dearest community. There is always food in our fridge, someone to stay the night if we need, rides everywhere for the girls, lawn mowed, shoulders to cry on and plenty of moments of light and laughter too.
We’ve made a bed on the porch for Andy and he spends hours outdoors soaking in the beauty of this amazing life. Because, like every spring, the bobolinks and wrens fill the mornings with their persistent songs, the apples burst forth with blooms and bees and hummingbirds, and the fresh promise of nature’s renewal fills us with hope.
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.
Wishing you all a happy and healthy new year!
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.
For several years Andy has helped a friend harvest wild rice up north. Usually the girls and I hang out back at camp with kids and whoever is not ricing at the moment. Andy loves the labor, being on the water, knocking the rice in the boat and the satisfaction of seeing it all drying on tarps. He loves the community of ricers and learning the skill. We also love the sweet share of rice we get for the winter!
Last year we were in the depths of chemo and could not make the trip. This year we went without hesitation. Three days and nights of playing with friends, jumping in the water, sitting around the fire, catching leopard frogs by the tens, and falling asleep to the deep hooting of the barred owl, left us exhausted but ever so thankful.
Thankful for this community of caring friends, for the sweet clear waters of the north, for late night conversations around the fire and for the continual opportunity to celebrate being together.
Day one radiation done. They said it went perfectly. We take heart in the care-giving of our medical team and in Andy’s strength and ability to heal.
Leading up to treatment, we had several days of family and fun. Camping out in Grampy’s yard for his birthday celebration and plenty of great time with cousins, in the pool, playing ball, slumber partying on the floor at Bill and Mary’s.
Through it all there lingers a sense of something surreal. How everyday-ness carries on. We small talk, and eat cake and ice cream (well, some of us do), we ride our bikes, watch the fireworks explode in the sky, remind kids to bring in towels and hang up suits, we gas up the car, and answer the age old question “are we there yet?”. But underneath it all there is that weight that we haven’t quite grown used to. It surfaces for each of us differently, I think. For me, that lightening bolt of recognition, the literal zing that takes my breath away, when I remember as I watch Andy play ball with his brothers, that our family has cancer.
Iris told me the other day that she wants our family to be normal again. (She doesn’t know yet that we never really were). But I get it. Shit yeah, I get it. “Me too kiddo”, I think. But instead I ask her to remember the good things that have come to us in the last year and half. More time together as a family, closeness with our friends, gratitude for all that is good and beautiful in our lives. She’s not buying it. Not yet. I can only hope that one day she will.
What a place we find ourselves. Grappling with the yin and yang of this life. How beauty and laughter can exist right alongside loneliness and fear. Are our hearts big enough for it all? Huge concepts to tackle at anytime in our lives, much less at 9.
And so tonight I tuck them in with our every-night bedtime blessing. I hold them literally, and then silently in my heart as they fall asleep. And I pray that my own bumbling will show them a way that is somehow full of strength and hope. I pray that every day they can find a way to balance worry with joy, fear with love. I wish it for us all.
And then came Easter. Memories of last year crowded our minds. The Easter eve trip to the emergency room which started the tailspin of treatment that has been the last year.
But then to wake to this holiday with good health, with good news still so fresh, with hope and renewal singing as loudly as the spring peepers. The blessings do not go unnoticed. Not even for an hour.
After a meal with friends and family and the annual egg hunt we headed to the Kickapoo Reserve in search of the Whooping Crane that Andy had been lucky enough to see (if full view) the day before. We did find it, stalking in the weeds at the far edge of the pond. It was little more than a long white neck in the binoculars, but still there it was.
Against all odds, the rare and perfect symbol of tenacity, or hope or just plain awe.
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