Of Butterflies, Black Moths and Angels

I sat with Joy on the back patio on a sunny afternoon in May 2017 as we talked endlessly about our sons. Her son, Kekoa, passed over to heaven in July, while our son Ian passed in October.

We had met each other only weeks prior at Griefshare, a grief support group we attended at a nearby church. Joy is a deeply spiritual woman with a solid footing in her faith. We grieved together with hope, knowing that our sons are now among the Lord’s saints in heaven.

Nonetheless … there were tears and pain.

When two butterflies suddenly started to dance on and around our hedges that afternoon, we chuckled about it. It was tempting to say these two dancing butterflies were our sons visiting us, but we knew better than that. Our children did not turn into butterflies, black moths or angels. They are still the magnificent souls they were here on earth but in a new and improved physical state in heaven.

Yet, as these two butterflies brought smiles to our faces long into the afternoon, Joy suddenly asked, “Do you see two butterflies hanging around like this very often?”

“Not really,” I replied.

We stared at those butterflies in silence for a bit of time, and then we laughed.

It felt good to laugh.

Something felt very special about those butterflies.

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Forever 23

We huddled around and watched intently as Dustin, Ian’s extraordinary hospice nurse, disconnected the tube that snaked out of the port in Ian’s chest. With clean, gloved hands, he meticulously wiped both ends with antiseptic wipes.

“Next, insert the needle into the vial to draw out the dose of Dex into the syringe,” Dustin instructed and demonstrated in a deliberate and patient manner.  “Then point the needle up and push gently to remove any air.”

This was the most important crash course we would ever take in our lives. Dave, Zach, Lei and I were suddenly intimately involved in not only loving and supporting Ian, but trying to sustain his very life. Now, together with hospice nurses who visited daily, WE were Ian’s new medical team.

Ian’s surgically installed port, once used for the administration of chemotherapy, was now called into duty for other purposes. A split line delivered self-administered pain medications through one side, while the other side was available for ongoing daily doses of Dexamethasone, an anti-inflammatory medication prescribed to help keep swelling down in his central nervous system. It was our job to administer Dex intravenously four times a day.

But, Dexamethasone soon became a dirty little word.

Among its many harsh side effects was insomnia. Ian knew that if his body had any chance of fighting, rest was critical. Determined to control what he could with his now precarious, precious life, Ian determined to forsake western medicine that unfortunately failed to eradicate the cancer. He requested that the doctors wean him off of Dex and all pain meds.

Ian had made up his mind. He would keep fighting, but he would do what felt right to him now … no matter the outcome.

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They Came

I stretched out on a piece of furniture with my eyes closed in a waiting room just down the hall from Ian’s hospital room. From the TV mounted just above my head, I could hear the NBC commentator calling what must have been an exciting swimming event at the Rio Summer Olympics. Our family had been eagerly awaiting the arrival of the Summer Olympics, a beloved event in the Coronas household.

But now, I didn’t care.

Today, it was simply meaningless.

Surrounded by family members who came (daily) with food, hugs and disbelief, I tried to rest my fatigued body and soul — if even just for a moment.

We were gathered down the hall because Ian’s room was full.  Family and friends came. It seems like they all came…long-time family friends, friends from Maryknoll School, University of Hawaii, T&C Surf, Xerox Hawaii, prayer warriors from church, and, of course, friends from the downhill skate community.

I worried that Ian might be overtaxed by all the visitors. The struggle was absolutely real, as he fought major bouts of nausea and clung to his pink hospital-provided container – just in case. His legs continued to malfunction and a walker was required for a trip to the bathroom located 10 feet away. Still, it appeared that the visits were helping Ian’s spirits. He was touched by each and every family member, friend, and co-worker who came to visit.

Ian was resting quietly on Monday afternoon when world-renowned Big-Wave Rider Aaron Gold and Joel Centeio, one of Hawaii’s most beloved pro surfers, walked into the room. It took just a second to register. Then, Ian’s face lit up. No introductions were required. Ian knew these guys. He maneuvered his bed position and soon they were talking surf – big surf, small surf, surf around the world. And, they were talking about God.

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We Feel You…

Facebook Post:  March 23, 2017

You bought this longboard very shortly after we got the news about the cancer and the challenging treatment plan you faced. One of the first questions you asked the doctor was if you could still surf. The doctor said there would be times when you probably wouldn’t be up to it because you might be too weak. He said, though, that it would be a good idea to stay active.

Well, that’s all you needed to hear and you made sure that the doctor repeated that statement with me in the room! I told the doctor he should probably define “active.” We all laughed, somehow, on that dreadful day.

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Loving God by Serving Others

Pictured above are: (left to right) Matt, Ian throwing double shakas, Mr. McGivern, Justin and Jake. Also participating in the 2010 Majuro Mission were Cyndi, Danielle, Jan and Quinn. 

This post is dedicated to Ian’s Maryknoll School 2010 Mission Trip compadres and the good people of Majuro.

YOKWEH YOKWEH! Hhaha i was going to try not to use internet on the FIRST DAY up here but since ou wanted me to mom, I will:) The trip was good everything went well and im typing this on an old very laggy computer in the school so sorry about the mistyping hhaa. Anyway its pretty trippy how different it is up here…its super hot and hard to stay not sticky for more than a minute. The room we stayed in the school last night had rats running around and roaches jumping and flying into big holes in the tile, but other than that it was pretty good fun! Haha…plus brushing my teeth and washing my face off this morning was a challenge without any running water and using only my bottle for water hah but it’s a good wake up call to use less water when im at home in the mornings! I’m staying with Matt at the principal’s house for the majority of the time…but one of us might get another host later in the trip. Well hope things are good at home and I miss all of you guys! Ill try to catch up on sleep tonight, despite the stray dogs running around barking at each other all night around here haha bye love you guys! Talk again soon -Ian

It was Ian’s senior-year mission trip to a tiny island in the Marshall Islands called Majuro, where eight Maryknoll School students taught summer classes at the local high school. The living conditions were rough by anyone’s standards. Icy rain water catchment showers, stray dogs and, as Ian described them, radio-active sized critters crawling around his head at night.

When Ian applied for the privilege to participate that year, he had to address his ability to adapt to unfamiliar and potentially difficult situations. He didn’t lie when he said that he believed he was up to whatever situation arose, but I don’t think any of them could have been completely prepared for the reality of life on this tiny atoll. And, while they did a lot of preparations to be ready for the trip, there was a fair amount of culture shock upon their arrival there.

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Old and New Friends

The Gift of Lorna and Keene

Ian had been diagnosed with a rare cancer a few months before I got a text from my old college friend, Lorna. We had also worked together for several years at the phone company but had lost touch for many years – decades, actually. A mutual friend, however, had heard that Ian was undergoing chemo and radiation treatment and suggested that Lorna contact me since her son, Keene, had recently battled cancer as well.

It was truly good to hear from Lorna after so many years. We texted back and forth, but when I realized that Keene didn’t win his battle, my heart dropped and it broke. Cautiously, I asked Lorna what kind of cancer her son had. A rare cancer she told me: rhabdomyosarcoma.

That’s what our son had.  

I then asked which of the two types of rhabdo – embryonal or alveolar? Lorna said it was alveolar, which is the deadlier of the two.

That’s what our son had.

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