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 watch

Dear Friends and Family,

This is the email I hoped never to write.  Yesterday Andy entered hospice here at home.  His decline since our return from Miami in April has been fairly swift.  He was able to take 3 rounds of immunotherapy treatment at Mayo, but the tumors in his lungs continued to grow.  Last week it was time to decide if he would try to pursue yet another treatment or work to minimize his discomfort and focus on each day.  The decision seemed clear and so we had a tearful phone call with his amazing oncologist who validated our desire to maximize quality of life from here on out. 

Andy is on supplemental oxygen and enough pain meds that he sleeps much of the day now (just in case you are a junkie you should know we’ve got armed guards and toothed dogs at the doors). His family and closest friends are here frequently.  The girls and I are never alone, which is good for now. 

The spring back here in Wisconsin was glorious and Andy’s wish to watch it unfold has been granted over and over.  From the daybed on our porch he was able to watch the warblers fly in, the bulbs push up from the ground and smell the sweetness of lilacs and locust buds wafting through the air.  The girls keep fresh flowers at his bedside, and I bring news from the gardens frequently.  He has had many beautiful and meaningful moments with those he loves.  Ten days ago, with his determined spirit, he took a canoe ride down his beloved Kickapoo River and though it tired him out greatly, there was not a moment of regret.  The sun shone on the sparkling water, the coolness of the bluffs touched our skin and the quiet of the valleys reached into our souls.  He smiled the entire way.

If you would like to reach out to Andy, I recommend you send a card, or write an email (to either of us) and I will be honored to read to him your words.  We ask that phone calls be kept to a minimum and of course no drop-in visits, please.  As Andy becomes less of this world and more of the next our circle tightens and my focus remains on him.  Thank you for supporting us on this path, as you have every step of the way.  

You all know and love this man, his gentle reach is far and wide.  Please hold his vibrancy and light in your hearts and minds, lift him up as he has done for us all.  His love is unending.

With so much love, 

Jonel and Andy

the love we left behind

It’s good to be home.  But it’s bittersweet in so many ways. There are many things we miss about Miami but first and foremost is the amazing community of homeschoolers that we were so lucky to fall in with.  Not long after we got to Miami we discovered the Global Field Academy and the families there welcomed us in with open arms.  Not just open arms, open hearts, open minds and lots of love.

The girls made friends for a lifetime.  Field trips and adventures, play dates and incredible new experiences.  Every moment bolstered their confidence and made us fall in love with our fellow humans again and again.  

It was fun to watch our country girls fall in so easily with these city kids and see these city kids completely embrace our country girls.  It was like they couldn’t get enough of each other. They showed us how to dance, we showed them how to knit. And when we left there were many tears (mine too) and promises to make visits again both here and there.  We truly intend to keep these friendships alive.

Thank you GFA for being our light in the storm, you don’t know how much it meant to us.  We miss you all.

you too are stronger than you think

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.

kickapoo love

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

Are We Still Normal?

Are we still normal?  I feel that question a lot.  It underlies the “How are you guys doing?” and “How is Andy feeling?”.  I’d want to know too, if I were you.  Our fragile human-ness wants things to be normal, even when they aren’t.  Normal is comforting and boring and easy to take for granted. Normal can go unnoticed until someone’s life explodes with things we all fear and then we really want to know: can there be normal in all that craziness?

So let me assure you.  We are still normal. 

 

I still drive Andy crazy when I cook (Disclaimer:  he’s the cook, I’m just the substitute) because I am a disaster in the kitchen.  Things eventually turn out tasting fine (mostly), but not before every pot is used, ingredients litter the counter (the lids now missing), something on the stove smells a little too hot, and the fridge door is standing open.  He calls me the kitchen spaz (even if that’s totally not PC) and I mostly don’t take offense.  Until one of the kids says:  “seriously, we are having this for dinner?”.  Sometimes then I lose my kitchen cool.

Andy still drives me crazy with his procrastination.  I mean seriously, an email that I could shoot off in about 30 seconds takes him 10 days to just get around to thinking about sending and that’s not even counting the agonizingly long time it takes him to actually write it.  And dude, just let me organize those appointments because I’m super efficient and I can stack them up in a way that doesn’t make us have to move the car 8 times and walk back and forth between buildings 45 times AND drive back in later in the day for the last one.  And yes, I can see you are annoyed and whispering “bossy pants” kind of under your breath. 

And the girls can never agree.  I think it’s a secret arrangement they have behind our backs. They probably lay in bed and practice it at night.  It must go something like this:  “If mom says, hey, do you guys want to stop off at the park on the way home…make sure one of us says YES (very enthusiastically) and the other of us says NO (in their most whiny voice).”  Or if dad says, “Even though it’s not Sunday I’m making pancakes for breakfast!  Make sure one of us jumps up and down yelling excitedly “Pancakes!” and the other of us says in our most grumpy voice “I’m not eating pancakes again!”.

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.

adventures in miami

We made it to Miami!  We are settling into our house and neighborhood nicely but feeling overwhelmed by the traffic and city just a few blocks away.  (I didn’t photograph any of that!)

It’s very green.  We haven’t tired of walking around the neighborhood admiring all the crazy tropical plants, and stucco and tile houses.  Elsa loves all the lizards.  The air is warm, but smells like city.  Sometimes it seems kinda quiet, most of the time it doesn’t.  Certainly we are in environmental and cultural shock.  Country fish floundering in a big cosmopolitan city.  Luckily Andy and I can call on all our various pre-kid travel adventures and at least act like we know what we are doing.

One of the first things we did was take the kids to the urban “farm” we found when Andy and I visited a couple weeks ago.  It’s just a neighborhood over, in Little Haiti, and it’s funky as all get out.

They rent rooms in the airb&b treehouses.  They grow veggies and eggs and honey.  They rescue animals (the potbelly pigs were the most fascinating) and they have volleyball games and vegan potlucks a couple times a month.  We’ll definitely do some hanging out there.

Yesterday after school and music practice and some work for me, we ventured out to an urban state park, just a few miles from our house.  Weird to have acres of wilderness in the city, surrounded by highrise skyline.  But we revel in nature where we find it and there was plenty to admire.  Thousands of tiny hermit crabs, a lightening whelk, jellyfish and even stingrays in the lagoon (the girls weren’t so excited about the purple flag beach warning that means “stinging marine animals”). 

This morning we walked to the farmer’s market, a few blocks down along Biscayne Avenue with non-stop traffic whizzing by.  But we found organic veggies, and homemade kombucha amd tempeh, fresh squeezed tropical fruit juices, crusty fresh bakery breads and even free range organic eggs (for $7/dozen!).  There is so much to discover and we try to take it in in small bites, retreating back to our little house and fenced backyard to chase lizards and put out food for the feral cats, so that the world doesn’t feel so strange and new.

I think it feels like a vacation with a lot of uncertainty and fear and worry mixed in.  I know we are so lucky to be here.  To have the resources to “move” to Miami to get the best care we can find.  We work hard to count those blessings.  When the girls are in tears missing home, missing friends, missing pets and bickering with each other because they are just uncomfortable inside themselves, I remember this is hard.  Hard for all of us.  And I remember that there are some things we can control and some things that we can’t.  And it will always be like that.  And I continue to pray that this path is making us strong and resilient and full of compassion.  And I remember, with so much gratitude, all of you who send love and support our way.

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.

Lily Louise 2001-2017

 

We returned home from the hospital on Wednesday after a smooth surgery for Andy to find that Lily (who had stayed home with my dad) was no longer able to get off her bed on her own.  She wasn’t in pain but it was clear she was ready.  So yesterday morning we called a friend/vet who agreed to come to our house to help her pass away.  Peacefully and gently she went with all of us holding and stroking her and telling her how much we loved her.  It was sad and beautiful and I’m so grateful she had us all by her side.

16 years ago we added her to our family of 3 (Andy, Frijole and me).  She was 4 months old, a border collie/coon hound cross.  Unlike Frijole who hardly ever got himself into trouble, Lily ate carpet, ripped open her belly on the barb-wire fence, destroyed many books and never got along well with other dogs.  She was quirky from the start.  She went crazy when we sang Happy Birthday to her.  She would let loose her hound dog howl at anything out of place, for example the laundry basket that got left in the yard.  She was unsure of the girls until they stopped toddling but as soon as she was sure she could trust them (and who can trust a toddler?) she loved them fiercely.   She loved to swim, was excellent in the canoe (riding rapids like a pro), and could find a stick you tossed in a brush pile a mile away.  She joined us on almost every road trip or camping adventure we ever took.  She slept under the covers in our bed until the girls came along.  Then she settled for sitting on my lap while I drank my coffee in the morning or getting belly scritches by the fire.  She was so, so loyal to her pack, which included us and a very few close friends and family.  Everyone else needed to steer clear.  She got shaky when she was scared and that was often.  Mosquitoes and flies were the scariest of all.  On camping trips she spent more than her fair share of time in the tent avoiding them.  

She was the light of Iris’ life from the beginning.  One of the first things Iris learned to say was “Dig it Ya Ya!” which would send Lily flying into snow piles to dig furiously while Iris laughed and laughed.  The two of them had a very special bond and I know that Iris (especially) will miss her for a long time.  

The house feels empty without her, but it’s hard to feel incredibly sad about an amazing dog life that lasted so long.  We’ll miss her soft ears that smelled so good, we’ll miss her chasing the cat around and laying by the fire for endless hours just waiting for us to lay down and snuggle her which we did so often.  We’ll miss her quiet company, her toenails on the stairs, the way she ripped up the grass and got crazy outside.  We’ll miss her deeply.  But we will love her forever and will never forget how lucky we were to share her life.

right now

Andy goes on weekend retreats.  To recharge, ski, center himself.  The girls and I have quiet days at home.  I knit by the fire while they play and draw.  Stitch by stitch I see this sweater becoming.  It wasn’t long ago that I didn’t have the patience or the presence for this kind of slow, stitch by stitch kind of work.  At least for something as time consuming as a sweater.  I hurried and made mistakes and abandoned things before they were done.  But now.  Now these moments are everything.  I have found that I can relish each millimeter of yarn as it wraps around the needle and is slipped off.  The texture of the yarn through my fingers changes as it slides along, thin then thick, then thin again.  I notice that mistakes only happen when my thoughts float away.  Back here with this garment appearing one stitch at a time, all is well. 

We went to Mayo again last week.  We spoke to a surgeon there who believes he can remove tumors from Andy’s left lung safely and well.  Tumors would remain in the right lung but the material from the left lung could be sent off for genetic analysis in hopes of finding a clinical trial for Andy. Many subtle options were given as to when the surgery can happen, how it should happen, if it should happen and we are trying to sort it all out.  We’ll meet with the oncologist at Mayo in a couple of weeks and try to make some final decisions.  In the meantime Andy camps out under clear winter skies with a close friend, carves to his heart’s content, enchants the kids with studies of Greek mythology and teaches skiing to a pack of them each Thursday.

And I find myself strangely settled.  Fear and worry have found a place that doesn’t ride front and center.  I remember the rawness with a kind of gratitude that can come in the slowness of time unfolding.  I can know that the future is as uncertain as ever.  But I can be here now.  I guess that’s something I’ve always wanted.