Calling of the Heart

Hello Friends,

I have to share something with you this week. It’s not my story. Well, it is … but it isn’t. I’m so touched by the friendship I’ve found through a fellow blogger. I didn’t expect it, but I surely cherish it. I’ll let her words tell the story:

Stephanie Raffelock’s blog “Calling of the Heart”

You can fall in love on a blog. Honestly you can. I have fallen in love with a family. There’s a mom, who is the blog writer. Her name is T and she is the reason that I came to know them all. There is a father who is strong, brave and very kind. There is a big brother, that if God would let you choose a perfect big brother, this is the kid you would choose. They call him “Bugs.” And then there’s Lulu. Lulu is a hero to a lot of people and she is winning a battle with cancer at a tender age when no one should have to fight such battles, but fight she does and I am convinced she is winning. I follow this blog so that I can keep up on Lulu’s progress, Bugs’ inspiring support, and mom and dad’s amazing, horrible/beautiful journey.

Recently Lulu was in a Christmas program and I heard her little voice singing straight to my heart over the magic of the internet. I was inspired to write a Christmas story just for Lulu and her brother, Bugs and my Labrador retriever, Jeter. I like to put Jeter into a story when I can, and as you will see, he is crucial to the outcome of this tail, er, um, I mean “tale.” So here is my story, dedicated to a family that I have fallen in love with. It’s called “How Lulu, Bugs and Jeter Saved Christmas“ (Note, since this posting, Stephanie has taken a break from her blog.  We miss her writing very much.  She has given me a copy of the story which I will post below)

Thank you Stephanie, you’ve made our holidays brighter!

Love,

a.l.l. of us

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How Lulu, Bugs and Jeter Saved Christmas

Lulu was a very special little girl with a really special big brother, affectionately known as Bugs. Lulu was sick sometimes so she knew all about what it was to hurt and not feel good. This made her heart very big and very sweet. She could so easily see other people’s hurt and knew how to love them back to feeling better. The big brother knew how to be caring because loving his little Lulu the way he did, his heart too was very big from all the selfless kindness he had learned.

iStock_000018432315XSmallLulu and Bugs were looking forward to Christmas, when Bugs got an email one day from Santa. It read:Dear Bugs and Lulu, I am running late this year and I need a couple of great kids to help me or there may be houses I cannot get to on Christmas eve. I know that you two are very good at helping others, so can you help Santa this year? I need you to take over gift delivery for the west coast. I will drop off a bag of presents with addresses next week. Look next to your fireplace in the morning on Tuesday.”
Love, Santa

Now of course Bugs printed out Santa’s email and showed it to Lulu right away. “How are we going to help?” asked Bugs.

“We are going to have to find away to fly around the sky and deliver packages to the children on the west coast,” said Lulu.

“I wish we had some reindeer,” said the big brother. “That would make everything perfect. We could fly around and get gifts to all the kids in time for Christmas morning.”

Then Lulu had an idea, an absolutely brilliant and wonderful idea. “There is a Labrador retriever that lives not too far from here named Jeter. The owner is always saying how Jeter doesn’t walk anywhere, he flies.”

“Ummm, the owner might have meant that differently than you are taking it, Lulu.”iStock_000018477838Small

“No, she said, shaking her head. “I believe that Jeter the Labrador can fly and he is just the dog for the job!  We can make him a reindeer costume and that will help.”  So Lulu excitedly ran off and found a brown bath towel and some old felt in her art area, and she started making a costume for Jeter, so he could fly like a reindeer.

Tuesday morning there was a big bag of gifts next to the fireplace, just as Santa had said.  Attached to the bag was an envelope filled with names and addresses…and on the envelope was a small note that looked like it was written in Santa’s own handwriting:   Don’t worry, your mom and dad cannot see this bag.  It is invisible to everyone but you.  Thanks again for your help—Santa

“Well that’s a relief, “said the big brother after he read the note.  Now I hope we’ll find a way to get all these presents delivered.

Lulu rolled her eyes.  “I told you, Jeter can fly.  We just need to dress him up in some antlers and some other stuff so that he looks like a reindeer.  Look at what I made.”  Lulu pulled out the brown doggie cape and antlers from under the couch and smiled proudly as she held them up for Bugs.

“We have to figure out how to get Jeter without actually stealing him from the yard,” said Bugs.

“Why don’t we just offer to walk him on Christmas Eve?”  So the plan began to take shape.  Lulu and Bugs had a reindeer costume for Jeter and a way to get the dog for Christmas Eve.  And  next to the fireplace was a bag of gifts that they were going to deliver to all the kids on the west coast.

Bugs walked over to the bag.  “This is going to be really heavy.”  But just as he said that the bag rose a couple of inches off of the floor.

“OMG,” said Lulu,  “looks like all we will have to do is guide it.

Later that afternoon their mom was serving them soup and crackers for lunch.  The kids spoke in whispers and were carefully hiding a list that they were making.  It was a list of everything that they would need to do Christmas Eve in order to get the presents delivered.

“You two seem like you have a little plan going,” said mom.

Quickly Bugs put the list in his pocket and grabbed a cracker. “There’s no plan.  We were just talking about Christmas and how cool it’s going to be.”

The mom smiled.  “Well, don’t let me interrupt,” she said, and she returned to rattling around the kitchen or whatever it is that mothers actually do in the kitchen.

It seems like the days couldn’t go fast enough between the now and Christmas Eve and Lulu and Bugs had never been so excited.  They had moved all of the gardening tools out of a large wheel barrow in the garage and decided it was big enough to hold them and the bag of presents.  They rigged up a harness for Jeter so that he could pull the wheelbarrow across the sky, though Bugs wasn’t too sure about a Labrador retriever actually flying.  Lulu was convincing though.

On Christmas Eve day, Lulu wasn’t feeling too well. It happened sometimes  She had good days and not so good days.  Bugs was afraid that maybe they wouldn’t be able to go.  Life could be up and down like that at his house.  One minute you have exciting plans and the next minute Lulu’s needs become the centerpiece of the family.  By afternoon though, Lulu was feeling strength flowing into her body and her heart and she called out to Bugs from her bed.  Bugs sat on the edge of Lulu’s bed and Lulu broke into a big, mischievous grin.  “Let’s do this.  Come and get me after mom and dad have gone to bed.”

iStock_000019156130XSmallA light snow was falling and a winter moon hung low in the sky when Lulu and Bugs quietly and secretly snuck out the front door.  The two kids wheeled the wheelbarrow down the street with the bag of presents inside, along with the reindeer costume and harness for Jeter.  They knocked politely on the owner’s door, with the wheelbarrow out of sight, of course.  “Hi,” said the two angelic little faces. “We wondered if we could take Jeter for a walk?”

“It’s awfully late for you two to be out, isn’t it?

“Well,” said Bugs “We are so excited for Christmas that we can’t sleep.  I think if we can take Jeter for a walk and then put him back in your yard, we will all sleep better.”

The owner handed Bugs the leash and told him to go get Jeter from the yard.  Lulu and Bugs smiled and waved, calling out Merry Christmas before they ran like the wind through the gate and into the back yard where a yellow Lab sat waiting as if he knew exactly what they were there for.  No leash was necessary because Jeter was already following the two out of the yard and into the bushes where the kids had hidden the wheelbarrow with the presents.

Lulu pulled out the reindeer costume and put it on Jeter.  “I know you can fly and if anyone sees you, just tell them you are a reindeer.”

“He can’t talk,” said Bugs.

“We don’t know that for sure,” replied Lulu as she fastened the reindeer costume around Jeter’s neck and straightened the antlers so he would for sure look like a reindeer.

Bugs harnessed Jeter to the wheelbarrow and the kids crawled inside with the big bag of presents in their laps.  “Okay Jeter, this is it. Giddy up.”  And with that Jeter began running faster and faster and suddenly they were airborne.  Bugs mouth fell open and it took a minute to catch his breath.  Lulu smiled a smug little smile and said “Told ya.”  Off into the night sky they went, snow swirling around them, lights twinkling below them.

“How do we know when we are on the west coast?” asked Lulu.

“The lights will stop at the ocean and we’ll see the outline of the coast.”

Lulu got a worried look on her usually confident little face and said “How do we get the presents into the houses?  Do we just drop them through a chimney?  What if there are no chimneys?  Do we use the front door?”  And just as she was getting truly worried, they saw the coast up ahead.  Jeter acted like he had been flying wheelbarrows across the sky his whole life and he dipped down low to the roof line of a row of houses and turned his head and barked three times.

“I think he wants us to drop a present,” said Bugs.  So he picked a package.  “I hope this is the right one for the right address.” And as he dropped the package it turned to golden glittering light and swooshed into the house under the door.  So, he picked another package and again, it turned to golden glittering light and found its way to another door.  Lulu picked a package and dropped it watching it swirl under the doorway of yet another house.  The kids started laughing and picking and dropping packages at a very rapid rate.  Jeter howled and wagged his tail with delight.  It seemed as thought Santa’s bag held an inexhaustible supply of gifts.  Up and down the coast they went, dropping packages and watching them find their way into homes in the form of glittering light.

As Lulu and Bugs flew about the sky in the wheelbarrow pulled by Jeter the flying Labrador retriever, they started to sing:

Christmas is a Time, Christmas is a Time, Christmas is a Time to Love

We often start to worry, and people get upset when things don’t all go right on Christmas DayiStock_000014318724XSmall

What we should remember, in all the push and shove is Christmas is a time to love

Maybe things don’t sound right, or look the way they should

and maybe they’re not perfectly in tune …

It really doesn’t matter, let’s keep our eyes above

’cause Christmas is a time to love

The  singing made everything very easy and pretty soon all of the packages were delivered and they were flying toward home.  As Jeter landed he knew in his doggie heart and mind that he had two very tired passengers.  He pulled the wheelbarrow to their yard and just like his mother had done with him, he gently picked up each child and managed to get through the front door and tuck them each into bed, nosing the covers up over them.  Afterward, Jeter went to his own home, jumped over the fence climbed through the doggie door and fell into a deep and satisfying slumber.

Before the sun was up, Jeter’s owner padded downstairs to make a pot of coffee and noticed the dog sleeping in front of the tree.  “What in the world?  Where did you get this reindeer costume?” she asked as she bent over to untie the brown towel and antlers.  “Those kids are something, I’ll tell you.”  A tired Jeter looked up and wagged is tale before putting his head back down to sleep.  “That must have been quite the walk, Jeter.  I don’t think I’ve ever seen you so mellow. Have a good nap.  You’re a good dog.”

In another house a couple of blocks away a light glowed in the bedroom window of one Lulu.  Kneeling by her bed was a jolly old man with a long white beard in a red suit.  “Thanks for helping me out kid.”  Lulu was still half asleep but she nodded at the old guy and said “You’re welcome.”

iStock_000002145962XSmall“Hold out your hands, “said Santa.  I have something for you.  A special gift for a special girl.  Lulu held out her hands and was amazed.  Santa had placed a light in her hands.  “Oh my gosh,” exclaimed the little girl.  “What is this?”

“This,” said Santa “is an inexhaustible supply of beauty, love and hope.  Whenever you need or want those things, or want to give them to others, just place your hands over your heart.”  With that the old man kissed Lulu’s forehead and tip toed out of the room, as she had already fallen back to sleep…with her hands held to her heart.

Santa moved on to Bugs room and quietly opened the door.  “Hey buddy,” he said.  “You guys did a really good job out there tonight. Thank you for all of your help.”

“You’re welcome, Santa.”

“I have something for you, Bugs.”  Santa handed Bugs a small bag.

“Thanks what’s in here?”

“This is what I like to call portable compassion.  You can take it anywhere.”

“What’s portable compassion?” Bugs wanted to know.

“Compassion is when your heart quivers because someone else is hurting and by your heart being open to them, you help to heal the hurt.  And portable just means you take it with you anywhere and everywhere. I know Bugs that sometimes Lulu gets all the attention, because she gets sick.  And I know that sometimes you feel invisible.  But please know, your parents see you.  Lulu sees you and all the world sees you and your goodness.  You’re a really special guy.  Remember to carry compassion with you.  Give it away freely and make sure that you always keep a little bit for yourself.”

Then Santa patted him on the  back, because that is what guys do.   And with that, Santa was gone and Bugs was rubbing his eyes as mom and dad walked into his room.

“Are you up? they both said in their cheeriest Christmas voices.  Am I up, thought Bugs.  Oh mom and dad, if you only knew!

“I’m up,” said Bugs and as he put on his bathrobe, he reached for the little bag of compassion and made sure he placed it in his pocket.iStock_000017816021XSmall

Christmas morning was filled with surprises and delights for all of the children on the west coast and in one home in one living room in one part of a very large country, the life of Lulu and  Bugs was also filled with wonderful surprises and delights.

As they sipped on hot chocolate and opened their Christmas presents their dad gazed out to the front lawn.  “How in the world did the wheelbarrow get into our front lawn?”

“Maybe Santa needed it to haul presents,” said Lulu.  And Bugs and Lulu exchanged knowing glances, holding onto Santa’s special gifts that would always, from this day forward save Christmas in their hearts.

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Bo Johnson article: Teaching us How to Live

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Hello Friends,

Lulu had another lemon-aid stand today at our church.  We are so proud of our little one for inspiring these donations. We will do exact calculations, but we should have close to $3000 from our 3 lemon-aid stands, which will be donated to The Blood Research Institute.    Thank you to all who have given to this cause, especially now, during Childhood Cancer Awareness month.  If you wish to donate, please click on this link: https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=HWVDDTBWNFYDE

In lieu of my usual updates, and in honor of our fellow warriors, I am sharing an article about our friend Bo.  He is at home in hospice now.  He has not only touched our lives, but the lives of so many.  I think you will find it very uplifting, moving and inspiring:

Bo Johnson: Teaching Us How to Live

The lessons of a mother and her boy’s fight

September 06, 2012

On Monday, August 27, Bo Johnson chose to come home to die.

For nearly a year he battled valiantly against an extremely rare, extremely aggressive form of Extramedullary Acute Myeloid Leukemia, also known as EM AML (read “Bo’s Battle,” for more). That Sunday, his doctors told him there was nothing more they could do for him – that he will die from his disease.

Bo didn’t want to die in the hospital. Bo wanted to come home.

• • •

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Bo Johnson, shortly after he shaved his head during chemotherapy treatments for Acute Myeloid Leukemia.

The 13-year-old Sister Bay boy with the humble smile has called the HOT Unit (Hemotology, Oncology, and Transplant) at Children’s Hospital of Wisconsin in Milwaukee his home for most of the last year.

His battle began with a Labor Day jet-ski accident and a broken pelvis that wouldn’t heal. On Oct. 8, 2011 doctors discovered he had Acute Myeloid Leukemia (AML), and within days he was prepping for chemotherapy. By the time he started treatment, his schoolmates had painted northern Door County orange – the color of the ribbon to show support for leukemia patients.

They made orange GO BO! ribbons, wrist-bands, t-shirts. They bought orange shoes and orange shoelaces. They painted orange ribbons on their cheeks and GO BO! on everything they could find.

“It’s been overwhelming to see all that support,” Bo says from the hospital bed his family set up in his grandmother’s home in Sister Bay. His voice is slowed to a drawl by the pain in his jaw, but not enough to hide how happy he is to be home among his friends. His bed faces out a wall of windows toward the water, just a few steps down from the beach where he yearns to play with his friends. “I don’t know what to think. People I don’t even know; you just feel so appreciated and comforted.”

Bo recognized right away that he was lucky. He had his mother Annika at his side, friends begging to visit, cards pouring in, and Facebook and Caring Bridge pages blowing up with messages from friends, family, and strangers.

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The Gibraltar Cross Country team showed their support for Bo Johnson at a meet Aug. 29, wearing orange ribbons and painting GO BO! on their calves. photo by Joy Manweiler.

But on his floor in the hospital he saw other kids suffering, some of them seemingly alone. Many would become his friends, his mentors, his teammates in the fight against terrible odds.

“They taught me a lot,” he says. “They gave me advice. Jack and I would go along the floor pulling pranks on nurses. They showed me that it’s not all doom and gloom in there.”

Jack Bartosz was one of those who taught him how to fight. The nine-year-old battled neuroblastoma for seven years, and his “I Back Jack” campaign raises funds to support research for new treatments. But there’s a heartbreaking risk in making friends in the HOT unit.

Jack died the day Bo got the news that there was nothing more they could do for him.

“Bo has had to see a lot,” Annika says. “He has watched other children die. Watched his friends die.”

In the face of such trauma, Bo struggled to remain positive where others could not.

“Some of the kids refuse to come out of their room,” Bo says. “They keep their windows shut, blinds shut. It’s pitch dark in their room all day. But you’re not gonna get anywhere doing that.”

Did he ever want to do that?

“Oh yeah,” he says, rolling his head toward his Mom, “but she wouldn’t let me.”

He says that every note, every card, every ribbon helped him answer the bell each day. The flash mob at Fall Fest, the GO BO! group photos at the school and the Sister Bay Bays game. The notes and updates on his Facebook page and the school assembly when Dr. Phil Arnold talked to the students about his disease. The candlelight vigil in Sister Bay’s Marina Park turned into a video by Chris Miller for Bo to see.

• • •

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A single orange ribbon waved from the Gibraltar School sign the day Bo Johnson returned home to Sister Bay. By the next day, orange ribbons waved from nearly every Northern Door sign, mailbox, and tree. Instagram photo by Myles Dannhausen Jr.

Learning that he had cancer was a shock, of course, but he says it wasn’t the worst moment in his ordeal.

“I just figured it is what it is,” Bo says. “I thought I would beat it. They told me it was going to be chemo, six months of treatment, and they said it was going to hurt…I didn’t know it was going to be this hard. They weren’t lying.”

He says this from his bed, his feet sticking out from beneath a Wisconsin Badgers blanket. His hands are too weak to shake, so when family friend Doug Bensyl arrives, Bo opts for a fist bump instead.

It is futile to try to imagine what it must be like for a boy who loves baseball, basketball, and football, to be confined to his bed, his body slaughtered by this disease. It is more futile still to try to comprehend how his spirit remains so strong.

There was a time Bo and Annika thought they had beaten his leukemia. He came home last February, his chemo complete. He returned to school on a limited schedule, put on 20 pounds, and was on his way to recovery.

They took a trip to Florida together, and when they returned Bo went to a Cal Ripken baseball practice and even ran the mile, beating his goal of eight minutes by two seconds.

“Well, what can we say!?!” Annika posted in their Caring Bridge journal in March. “Bo has never been happier than to be home with all his friends and familiar faces.”

Then he joined his classmates on the annual trip to Washington D.C. in late April. Near the end of the trip his arm swelled.

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Bo was inspired by 9-year-old Jack Bartosz, who he met in the HOT unit of Wisconsin Children’s Hospital. Jack died Aug. 27 after battling neuroblastoma for seven years. Photo by Annika Johnson. photo by Annika Johnson.

On May 3, Bo’s 13th birthday, they learned that his leukemia was back. This time chemo was not an option. He needed a bone marrow transplant (also referred to as a stem cell transplant).

They always knew this was a possibility. It’s not uncommon for an AML patient to relapse in the first year after treatment. They prepped for the transplant, but on June 21, Dr. David Margolis, the program director for blood and marrow transplant at the Children’s Hospital of Wisconsin, entered Bo’s room and delivered news they couldn’t possibly be prepared for.

“We have grossly under-estimated Bo’s burden of leukemia,” Dr. Margolis, told them. “It’s not just bone marrow-loving. It’s bone-loving. We’ve never seen it like this, and we don’t know how to treat it.”

This is when they learned Bo had Extramedullary AML, meaning that the cancer doesn’t confine itself to the bone marrow, but attacks the bones throughout his body. That’s why it kept coming back, why Bo couldn’t get healthy. The chemotherapy was successful in fighting the AML, but chemo doesn’t kill the EM AML.

“Is this rare?” Annika asked him, through tears.

“Dr. Margolis practically fell off his chair and on top of Bo’s bed,” Annika remembers.

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Bo’s schoolmates have shown their support in every way they can – ribbons, fundraisers, t-shirts, even special team shoes. photo by Paula Hedeen.

“It is so rare,” Dr. Margolis told them. “We have never seen a biological make-up like yours. Your whole chemistry is unlike anything we’ve seen before. You don’t function like a typical AML patient, and we don’t know why.”

They learned that his chance of beating the EM AML were extremely low, perhaps as low as three percent. It was the most difficult moment of Bo’s ordeal.

“I didn’t really have anything to say,” Bo recalls. “I just sat there with my eyes closed, waiting to hear what they said next.”

Annika thought they were talking about the wrong boy. She couldn’t talk; she could only cry.

His best option was Total Body Irradiation (TBI). It is not pleasant, and for the first time, his doctors gave him the option of palliative care.

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On his second night home from the hospital Bo’s friends showed up to take him to one of his favorite “hot spots,” the Sister Bay beach. Pictured (left to right): Casey Weddig, Connor Brennan, Quinn Jacobs, Ian Chomeau, Seth Johnson, Andrew Iding, Ernie Erickson, Ava Erickson, Hannah Helm, Kara Caldecott, Shannon Martin, Adele Steebs, Mariah Davis and Bo Johnson (center). Photo by Chandra Johnson.

“You don’t have to do this,” Dr. Margolis told Bo. “This is going to be terribly painful, and it is very likely that it won’t work. Nobody will question your fight if you choose to go home.”

Annika left the decision to Bo. He had been through so much already. She had watched him writhe, heard him scream, in pain. It was up to him to go through it again.

Bo chose to put the gloves back on, to go another round against a disease that had him by every measure – a foot taller, a hundred pounds, an arm’s length. He would take its devastating blows one more time, in hopes of sneaking in one lucky punch.

Dr. Margolis told Bo that he had to be 100 percent sure that he could do it. That he couldn’t make any excuses, play possum for the nurses, which he was so good at, or beg out of walking laps around the floor. He gave Bo a motto.

“Just do it,” he told him, and he drew a swoosh on the white board of his door.

“I went by that the whole time,” Bo says. “You don’t want to take a bath? Well just do it. You don’t want to walk laps? Well just do it.”

The TBI decimated his tissue. He suffered from mucositis, which left him with open sores on his tongue, throat, and intestines that felt like shards of glass were slicing through his body.

For four weeks he couldn’t eat. The only thing he could swallow were the Cyclosporin pills to help his new stem cells grow. The pills were “three big horse pills,” Annika says, and Bo had to take painkillers just to swallow them.

• • •

When Bo chose to come home, his only regret was leaving his “second family” behind. The nurses at Children’s Hospital were incredibly personal, he says, helping him through every difficult day.

“It’s hard to be away from the hospital because you feel so safe there,” he says.

Annika has a great deal of respect for Dr. Margolis. He didn’t shield Bo from reality through this process, didn’t sugarcoat any news. In fact, he reminds Annika of a stubborn old Swede she knew.

“Dr. Margolis doesn’t hold back, he spits it out. He reminds me of my Dad,” she says, referring to her late father, the restaurateur Al Johnson.

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The GO BO! ribbon has become a ubiquitous presence in Northern Door County.

Last week Dr. Margolis delivered the hardest truth.

“Bo is going to die from this,” he told them.

Dr. Margolis asked Bo what he wanted to do.

“I don’t want to die in the hospital,” replied Bo, who in a world without cruelty would instead be choosing a new pair of shoes for the coming school year, not where he wanted to die.

“I came home because I wanted to see everyone, to remind myself what Door County even looked like. I love the sunset every night,” he says. “I just didn’t want to go through the treatment again knowing I could have the most painful death out there. I wanted a peaceful death.”

Bo does not cry as he says this. He says it almost bluntly, as if it’s patently obvious. He is surrounded now by about a dozen of his friends, part of the growing stream that are coming to see him. He is happy to be with them, they are happy just to have him back, asking when they can take him to the beach, the favorite of the “hot spots” he wanted to get back to see.

• • •

Before he got leukemia, Bo and his mother would lay in bed and he sometimes asked her – “What would I do without you mom?”

“Don’t you worry,” she told him. “I will always be there to look after you.”

She never expected the tables to turn. Now they lie in his bed and he puts his arm around his mother. He tells her that he’s not scared, that she’s going to be okay.

“I don’t want you to sit in your house and cry all the time,” he said to his mother recently. “I need to know that you will be happy.”

Bo spent a lot of time over the last year thinking about what he would do if he could get healthy again. He thought of becoming a nurse, to pay forward what his nurses have done for him. This summer he came to grips with the idea he might not make it that long.

“I wanted to live a decent life as long as I could,” Bo says. He hoped not for a long life, but for another year or two. “I could do a lot in two years.”

“He could just be with his friends,” Annika says, “and do what they do every day. Go to the beach, the football games, the basketball games.”

That evening his friends wheeled him down to the pier where they used to leap into the bay. The next night he made it to Gibraltar’s varsity football game.

“He wouldn’t stop talking about it!” Annika says. She wants to take him to the first Packers game Sunday.

More than anything, Bo says he hopes that the support and love that his friends and community showed for him will not dissipate when he is gone. His mind turned to the small gifts that meant so much to him.

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Bo Johnson with his mother Annika.

“I wanted to help people if I made it out,” Bo says. “I would just like to go to the hospital, even to [Scandia Village] just to help. Or take a spare $25 that would help a family up at the HOT unit. Donate food to the nurses. Just to help anyone I could in that kind of way.”

At the end of our conversation we talk about one of those small gestures, the orange ribbons that sprouted up on signs, trees, and telephone poles when the community learned Bo was coming home. He talks about what the outpouring of support has meant to him, what his friends have meant to him.

“I want them to know that they were my friends,” he says. “They’ve been supporting me. I’d just like to thank them. It means so much.”

Now, he wants people to remember him, but he wants them to continue supporting others the same way. After he got the news that there was nothing more the doctors could do for him, Bo gave his mother a mission.

“I want you to run every run, walk every walk,” he says. “It doesn’t matter who it’s for. Raise money, and go back to the HOT unit to give families a little money or a gift certificate. Anything.”

• • •

On Monday, August 27, Annika announced that Bo was coming home to die. She had it wrong.

On Wednesday, August 30, Bo Johnson came home to Sister Bay to teach us how to live.

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