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.
There is no easy way to say it. The CT scan didn’t bring good news. The large tumor in in Andy’s left lung has continued to grow. Because he had progression while on the medication he no longer qualifies for the trial that we have been doing here in Miami. We’ll meet with the doctor again this Friday to get final details and to see what advice she has for going forward.
What to do with this news? How are we? I’m not sure at all. Fumbling, angry, heartbroken. But not without hope. And this is where you come in. For some reason it’s hardest for us when it feels like people are feeling sorry for us or giving up. Please don’t. We aren’t. We aren’t feeling sorry for ourselves or giving up.
This morning we woke the kids up at 6:30 am and drove to the beach to watch the sunrise. It was fresh and wild and every color of hope you could imagine. Then we went out for coffee and pastries just like everything was wonderful. Because in that moment it was.
Despite our best efforts to expose them to so much more (or maybe because of? What’s wrong with a little Queen, Bob Marley, and Taj Mahal?), our girls are fully into pop music these days. And this song (in addition to being the Olympics theme song and played constantly during those 2 weeks) gets played on a continual loop in our house (and thus in my brain). I think it has become the soundtrack of our life here in Miami. Well that and Camila Cabello’s Havana because you can’t escape that song here!
And we tend to frame this road with cancer as a healing path and not a fight. It feels better that way, to us. But yet, sometimes there is no way around the fact that we need a “fight song” a “take back my life song” a “prove I’m alright song”. I guess this is it.
So, this week Andy’s test results came back and they were good. The MRI of his heart showed that the function is back to normal (indicating it was the drugs not the tumor causing a problem) and that the tumor itself has not yet invaded the heart tissue. His doctor has decided to put him back on the medications at a lower dose hoping that his heart can handle that. He’ll be watched closely. The MRI did not show us if the tumors in his lungs are continuing to shrink. For that we have to wait (again) for the next CT scan which is scheduled in a couple of weeks.
He is feeling tired in many ways. We all are. There isn’t a lot we can do about that, other than crank this little pop song and move forward. So onward.
There are two things we hear a lot:
1. You guys are so strong…I don’t know how you do it…You handle this with such grace. Etc.
and
2. It’s just not fair. This shouldn’t have happened to you.
To number one I want to say this: I truly believe you would do the same thing. We have no super powers. When you wake up the day after a doctor has said “you have cancer” and your life is forever changed, you have no choice but to eventually get out of bed. I mean you can only stay there surfing endlessly through Netflix movies for so many hours before the kids want to be fed or the cat litter stench becomes so overpowering you find yourself thinking about that more than cancer or your concerned friends come over and threaten some kind of energetic cleansing ceremony that you really don’t have energy for.
Until the moment someone is actually dying, there is stuff to do. Someone probably still has to work, and everyone needs to eat, and the toilet gets used (probably more often, if feeling scared scares sh*t out of you) and so needs extra cleaning, and there will be more appointments than you can ever imagine and all that driving will mean your car needs some kind of maintenance and if you have kids they’ll be needier than ever and at the end of the day there will be like 248 emails and texts to return. (For the record, in the moment I am actually dying, my to-do list will be wiped clean so as to not distract me from the task at hand, and don’t plan anything otherwise or I’ll haunt you forever.)
But seriously, you’ll get up and put food on the table (there is no shame in popcorn for dinner) and you’ll take the compost out when someone finally says “what the heck is that smell?”. You just will. You don’t really have a choice.
If there is any “secret” to our strength it might be this:
I think by nature we are both wired to, most often, default to hope and wonder, not depression and darkness. I know that’s not everyone’s story and we see our privileges clearly. We also don’t hesitate to employ drugs (think prozac) and therapy and any other support we can think of (massage, wine, exercise, chocolate, mindless movies etc.) You can do this too.
I also think we’ve made a conscious choice to proceed through the days (months, years) following that dreadful news with a kind of purpose. A purpose to keep loving each other and being as kind as we possibly can and to keep finding joy in each moment.
When your heartbreak comes, know that you will get up and put one foot in front of the other. Not every day, but enough.
Thank you for thinking we are strong. We are. And so are you.
Which leads me to number two, the “it’s not fair, and why aren’t you angry” sort of comment. Here’s the deal. 17 totally innocent kids just got shot in a school 42 miles from our home here in Florida and their families are grieving in a way no one should ever have to grieve. And everyday that we drive to the clinic we see sad, slumped bodies lying in dirty bedding under the overpass. People with their entire world packed up in a stolen shopping cart who have hopes and dreams and probably children, or at least parents, some where in the world. And we just read an amazing kids book (Refugee, check it out in the sidebar) that follows the based-on-true stories of three refugee children from Germany, Cuba and Syria. And these people live war, and starvation and terror every day for years on end and there is nothing they can do but try and run for their lives.
We aren’t angry about Andy’s cancer because everyone has something. Suffering is universal. Some people have to suffer their entire lives. Some of us never find love. Some of us can’t forgive our parents. Some of us work ourselves to death. Some of us die of starvation. Starvation!
This gives us some perspective. Andy has cancer and it’s terrible and scary and heartbreaking. But we still laugh with the kids and drink coffee in the morning and watch the parrots fly over in the beautiful blue Florida sky. We have resources enough to take them to rent rollerblades and eat McDonalds (ok, we have resources enough to feed them better than McDonalds, but what the hell, it was only once, I swear). We still see the kindness in others and feel really psyched when a stranger makes room for us to merge into the long line of traffic on the interstate on-ramp.
These things are important and worth noticing. They make up the beautiful moments of our days. In my opinion they are worth spending more time with than our little thoughts about why someone can’t put the butter knife in the sink instead of leaving it stuck to the counter, or who took up two freaking parking spaces in the completely crammed parking lot at Whole Foods. C’mon guys, let’s all settle down a little bit and remember: Be Kind. Everyone you meet is fighting a battle.
It may be cliche, overdone, and found on cute little signs sold at TJ Maxx. But still.
This week Andy got pulled off the trial drugs, again. He had an echocardiogram which showed a decrease in his heart function and since we aren’t sure if it’s the drugs causing that or the crazy tumor next to his heart, he had to stop taking them until further testing can determine what the heck is going on. Up, down, up, down… and we wait. In the meantime we plan to go check out some birds at Corkscrew Swamp Sanctuary and probably eat some junky food and look for cool shells on the beach. And if you look at us you won’t know that our hearts are breaking because we are still noticing all the beauty in the world and it makes us smile.
Yesterday while I was in the living room working, the kids called out that a package had arrived in the mail. It was long and slender with a return address of “The Goofballs at the Kickapoo Valley Reserve”. We were intrigued. When we opened it up we found a photo poster depicting the images above. There were some tears. Here’s the story as I know it.
On a January afternoon a couple of weeks ago, a bunch of our Kickapoo friends trekked out to one of our favorite places on earth to show our family some Kickapoo Love. They all wore red, they stomped hearts in the snow, they held up letters of love and they even found a guy with a drone to capture it all. I’m sure there was plenty of laughter and fun. Can’t you feel it? We sure can!
Even when the world seems dark and scary there are people out there holding up the light for you. Giving you strength and confidence to carry on. We feel the love from that little valley flowing like the river right here to the city of Miami. Filling us up, carrying us along. We miss you all and can’t wait to come home.
Cheers.
with photo credit to Jackie Yocum and Garick Olerud
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