I thought I knew you, Lord,
close as could be.
Time spent together,
you held the key.
Promises made,
and promises kept.
Into the future,
walking, lockstep.
Then he was sick,
then he was gone.
Prayers unanswered,
no way to live on.
I thought I knew you, God.
ruined in the wake.
Disappointed, let down,
crushing heartbreak.
If anyone had told us that we could NOT take Ian out of the hospital to bring him home or take him for intensive naturopathic treatment…well, I just can’t even fathom what measures we would have taken to keep our “hope” alive. The doctors had given up on our 23-year-old son Ian just as they had given up on Alfie. But, are they God? Are they his parents, fiancé, brother, grandma, grandpa, aunty, uncle, cousin or best friend? Whether a hospital/doctor/government ends up being right or wrong, it doesn’t matter. It’s NOT their place to make that call…it’s just not.
We were blessed to have doctors that supported our decisions, even when they did not agree with some of them. They thought it was too risky to fly Ian to the Big Island for intensive naturopathic treatment and determined it would be fruitless. But, Ian’s mind was strong. He WANTED to go. He was not ready to give up. As his family, we would have moved mountains to give him every last fighting chance. What did we have to lose?
What did Alfie have to lose?
I will never see those two weeks spent on the Big Island giving Ian his “Hail Mary” as a waste of time. NEVER. In fact, given the circumstances, it was the best of times.
What was the alternative? Think about it.
We have lost so much. But, Ian died with dignity…making choices as HE saw fit through the end of his life. This was OUR FAMILY.
No one had the right to tell us when to “give up”.
My heart is shattered for these parents.
#GoodbyeAlfie #PrayersForTheFamily
#GratefultobeAmerican
I feared the hedge would die.
One day, in the middle of the chaos, I dared to dream that the hedge would make it.
I imagined how we would later tell the story of the dying hedge in our front yard as a metaphor of how you faced down your near-death experience with cancer, but you came back with vigor to live out the rest of your days with renewed focus and perspective.
We would explain how the dry branches appeared beyond resuscitation. It was that pesky, destructive white fly that snuck in under the radar and spread relentlessly beneath the abundant beautiful green leaves and orange hibiscus blossoms. Continue reading “The Hedge”
Is it strange that I count the months you’ve been gone in the same way that parents count the months of an infant child’s life? Each month, as time slips by, I can’t believe we’ve made it this far without you here.
Yet, if the pattern holds true, I’ll stop counting the months soon. Just a few more months and we will likely start referencing your absence in years — should anyone ask how long it’s been.
No matter how or if I express the breadth of your absence on any given day, I always know exactly how long it’s been …
because losing a child is nothing like having a child.
To watch your child grow is the ultimate privilege. Fully in awe of the miracle, you instinctively know that he or she is a gift and you celebrate the milestones, month by month, and then year after year.
When there is life, this formula is sustainable. It propels you forward.
When there is death, this formula is difficult to sustain.
For 18 months, I have quite literally been walking with my head turned in the opposite direction … looking backwards.
If I continue this formula, I fear it will sink me.
So, where do I go from here?
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.
The hospital bed in the middle of our living room was surrounded by sofas that served as seating for those who came to say goodbye. Hospice workers came and went, addressing Ian’s “comfort” needs that changed drastically with each passing day.
Pastor Glenn arrived on Monday to pray with us, again. This time, he gently told Ian that while we continue to pray for a miracle, it was time to consider that God was preparing a place for him.
But Ian was not ready…
Even Jesus asked God to “let this cup pass from me” before going to the cross.
Pastor Glenn later reassured us that even if Ian wasn’t ready to leave, God had him – his child – by the hand and would not let go.
Six days after returning home from our Hail Mary attempt at the naturopathic treatment center, the good Lord dispatched his Angels for our precious Ian.
“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.
Kim Nolywaika of You Can Trust Him blessed me with a Liebster Award nomination! Well, that made my day…
As per the (alternative, Set #2) Rules, I would also like to nominate the following blogs:
Looking for God in Messy Places
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.
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.
Gift of God : Ian Coronas 