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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A Glimpse of Heaven

“Ma, can you show me around?” Ian asked as daybreak arrived.

Grimacing in pain, Ian slowly sat up in bed. I pushed the wheelchair as close as I could to the large king-sized bed. Taking hold of him under booth arms, I moved him onto the wheelchair. I then pushed him very carefully over the sliding-door track so as not to put any more pressure onto his aching neck.

We exited the room onto the grounds of the naturopathic treatment center where we were scheduled to stay for the next 14 days. I wheeled him through the property that featured lush trees, hammocks and a mostly empty lava pond. He soaked in the beauty for about five minutes but suddenly said, “Let’s go back.”

I knew the pain and pressure on his spine had caught up with him. I rushed him back into the room. As I transferred him back into bed, he sweetly thanked me for taking him outside. “I just wanted to be sure I wasn’t going to be stuck in this bed forever,” he added with a small smile.

The very hard truth is that Ian would not leave that bed again under his own power, as paralysis continued to take over.

When we arrived at the treatment center the day before, Ian was too exhausted from the plane ride over to notice the beautiful surroundings. As soon as we arrived, he was placed into a large, quaint room with ample space for us to stay by his side.

My heart surged with hope for the first time in weeks. We made it to the Big Island. The center was beautiful and very unlike the harsh hospitals Ian had come to know all too well that year.

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With Hope

If positive vibes and hope could save a life – as so many of us innocently believed during Ian’s cancer trial – then Ian would be alive today. But, sadly, positive vibes and hope did not halt the cancer that continued to advance.

The reality of this relentless cancer came crashing upon us, yet again, when Ian’s mid-section became completely numb, just days after his 23rd birthday . Was it growing tumors pressing on nerve structures within his spinal cord? Or, perhaps a severe case of peripheral neuropathy, a side effect of one of the many harsh chemo drugs that pulsed through Ian’s veins for many months.

Ian was no longer a candidate for chemo trials on the mainland or immunotherapy, an emerging cancer treatment discussed at length with Ian’s oncologist. Ian decided — with our full support — to hang his hope on naturopathic treatment protocols designed to wake up his immune system so it could fight the cancer naturally.

I knew what treatments Ian needed, including the highly touted high-dose intravenous Vitamin C. However, driving him around to various appointments on Oahu was getting more and more difficult as Ian became weaker. In addition to his core being numb, Ian’s hands soon malfunctioned, just as his legs had. In time, he could no longer hold a fork, write with a pen, or text on his phone.

I searched and prayed for a one-stop facility that could care for Ian and provide all of the naturopathic treatments in a concentrated manner. My prayer was answered when I came across a naturopathic treatment center on the Big Island. It sounded perfect.

They could administer all of the treatments we desired and more, all in one place, under the care of an experienced naturopath doctor. They administered the world-renowned Gerson Therapy diet, a strict diet of juicing and specific whole foods – much as we had been doing on our own for the past month. Plus, they could administer progressive protocols commonly used in Europe to treat cancer.

Ian was sitting in the recliner in our living room when I gave him the news about the treatment center and what they could provide. He listened carefully and then a huge smile came over his face. He looked over at Lei and said, “Want to go to the Big Island?” Of course, she did.

We all could feel the extreme urgency of the situation; this was Ian’s final stand.

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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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What Else Can We Do?

One year ago today, on August 5, 2016, (Friday) Lei and I hoisted Ian into my car and drove him to the nearby clinic. His health was deteriorating rapidly. It was an unexpected turn of events after receiving glowing evaluations just two months prior, following three months of chemo and radiation.

However this week, Ian suffered a severe headache, he could barely eat and his legs grew weaker and weaker by the moment. He clutched Lei’s shoulders and coerced each wobbly step out of his reluctant legs. While at the clinic, Ian suddenly lost his ability to speak for a few minutes.

Something was very, very wrong.

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Our Little Yellow Flower

Dave was walking a bit ahead of me as Rosie pulled him quickly towards the park she enjoyed so much. He was a good 20 to 30 feet ahead, and this provided an opportunity for the emotions that were simmering inside me to explode like a mishandled pressure cooker.

“Why, Lord? Why Ian?” I cried out. Questions I asked often in those very early days.

“Lord help me,” I cried out audibly, but not loud enough for Dave to hear. I wiped away tears that surged and receded violently like tsunami waves.

Rosie stopped to sniff around and soon we were walking as a group again. I’m sure Dave didn’t notice my sad condition because happiness was altogether elusive back then.

We reached the center of the large open field as my thoughts swirled. I had a severe ache inside my soul. I missed our boy so much I thought I might die. As tears began to well up in my eyes again, I diverted them towards the ground hoping to spare Dave the trauma.

When I looked down, at my feet was a little yellow flower. I plucked it from the earth. This was not just any little yellow flower.

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