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.
Jonel and Andy
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.
And we still have to clean the house and find the lost library book and fix the flat tire on someone’s bike. Oh, and the grocery. That’s normal too except with the extra bonus of this being Miami and it takes 20 minutes to drive 1.5 miles in traffic and then when you get there you can’t find a parking spot and the girls starting fighting over who gets to push the cart. And then you get inside and there is NO room to even move that cart because everywhere you go in Miami there are 150% more people in any given space than there should be. And the kids are so wide-eyed at all the 6 inch heels and dreads and makeup and nails and dogs in purses and leopard print spandex that they won’t let go of the cart and so I’m totally STUCK between the mangoes and the avocados. Wait, is that normal?
Suffice it to say, we move through each day with laughter, frustration, impatience and love, just like you. Yes, we may have moments of raw fear, deep fatigue, mounting panic and utter sadness. That’s part of our normal, but not all of it. And we make sure to embrace the normal wherever we find it. Here’s hoping you do too.
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!
It was a lovely fall weekend, and we enjoyed every minute. Andy and the kids spontaneously decided to build a “tree fort” and we enjoyed the sweet company of my Aunt and Uncle (my mom’s sister) who were visiting from the east coast. Iris and Elsa really love spending time with their family, and these two made us laugh and smile and feel full of love all weekend long. I so love Wisconsin, but I know that there is a hole in our life in the shape of that big Italian family out east. It’s so good to see them when we can. Thank you for coming our way Barb and Mike. We love you!
Summer is so gorgeous. Sometimes I think I love the mornings most, with the fresh dew sparkling in the morning light, the flowers in full bloom by 5:30, the air full of bird song, the otherwise quiet cool. But then sometimes I think I love the evenings best when the moisture descends into the valleys and the shadows make everything green in a new way. Sometimes I think I couldn’t love this place more. And then I do. We are so lucky.
We spent a weekend in the Twin Cities recently with friends and family. An annual retreat for us to city and poolside. Always such a pleasure and always so good to come home to this lush country.
Andy built a new screen door for us this week out of butternut boards he had milled from a tree that came down in my dad’s neighborhood. It turned out really lovely.
Tuesday we head to Mayo again for two days of testing and discussion. Maybe we’ll decide what’s next, maybe we won’t. It really couldn’t be more unknown right now.
And then maybe best of all, when Nina and Poppy headed home for Minneapolis they left little Phinn behind so he can try out being a farm dog. The girls are smitten. Aside from chasing the cats he is doing great, and even though he’s not big and floppy (and I’ll eventually need one of those), I have to say I’m warming up to him. 
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