Colin Loves Tractors Follow Colin's progress through treatment for a brain tumor

January 29, 2016

Hawaiian Sunrises, aka Aloha Ra

It’s easy to get stuck on an idea: culturally imposed, personally fabricated, or more often a blend of both. For various reasons, I got it in my head to watch sunrise as a family every day of Colin’s Make-a-Wish trip to Hawaii. Colin himself has a certain fascination with the sun and the warmth and comfort it brings. Given the time difference between New York and Hawaii, this quest wasn’t as insane as it sounds, and one of our planned excursions was a sunrise jaunt to the summit of Mt. Haleakala, the dormant volcano that forms the highest point of Maui. I wouldn’t have considered it for the kids had we not been rolling off of a five-hour time difference where leaving the ship at 3 am equated to getting to school.

Personally, the first hints of the sun are my favorite time of day, the pre-dawn when light barely stains a still-dark sky and the world has not yet awakened. There is a placid solitude to these ephemeral moments and a feeling of calmness that transcends the chaos of humanity, touching nature in a more pure and prehistoric state. The ship would also afford us with more opportunities to watch the orb of the sun itself emerge dramatically at the horizon; at home, the view is obscured and unspectacular in addition to being timed at moments when the business of the day has already set in.

For Colin’s part, he has expressed much fascination with Ra, the Egyptian sun god. He repeatedly asked if we would be able to sun gaze during the trip, and I will never forget the bliss on his face sitting in a chair in the sun during one of Aidan’s fall soccer games. With this in mind, I convinced myself I wasn’t crazy, trying to sell Colin on the idea by telling him that we could say good morning to Ra every morning.

If it isn’t already evident, my plan devolved fairly quickly, but I did manage to capture sunrise on my own on each of the mornings of our vacation, not counting travel days. There are so many things to say about our trip and itcmomentousofof incredible experiences. However, the series of sunrises is a lens that created a narrative that was perhaps irrationally important to me.

Day 1: Oahu, Hanauma Bay

With the long trek across the country before heading deep into the Pacific, there was no way for us to arrive in Honolulu the same day the ship departed. That first travel day started before the dawn with a limo pick-up, a hallmark of the Make-a-Wish trip. In our case, an impossible long stretch Hummer pulled up in front of our house, prompting Colin to ask, “Is that a bus?” Pretty much. For Ithacans, one might expect a Prius limousine, but I’m surmising that’s not an option.

I had hastily taken an iron pill as we gathered ourselves together and my stomach wasn’t feeling settled, but that mild discomfort settled into the background against the flurry of activity. We and our luggage piled into the limo in the brisk early morning darkness, as winter has decided to finally make an appearance before our tropical trip, just in time to give credence to our escape from the frozen landscape.

I gave the boys brownies for breakfast, the last remnants of a farewell treat from our neighbor across the street, just the thing for an inauguration of a momentous trip. Woo-hoo, we-are-on-vacation-breakfast-brownies in the back of an absurdly large vehicle dancing with laser lights and LED stars, sparkling in waves of alternating color. Yes, we had a bit of fun with the control panel in the back.

Adding to the absurdity because there is never enough of that in our family, my system robustly rejected the iron pill and a brownie I thought might help matters (nope!) and I soon found myself hurling into a plastic bag in the back of a limo with two children innocently chirping, “Mom, are you okay?” I know I can’t be the first to have done so in that spot but probably the first to do it sober and with such an adorable audience.

What a way to start a wish! In fact, it is a fantastic way to start a wish trip because, by contrast, Des Moines would have seemed awesome, much less the white sands of Waikiki that ultimately greeted us on the other end of our journey. The Sheraton gave us a very warm Hawaiian welcome and an incredible suite with two balconies. I set off through the cooling sands to fetch our rental car, making my way past hula dancing tourists on a hotel stage, the sounds of raucous laughter suggesting incipient uncontrolled inebriation, and the mid-beach surprise of the anonymous mound of a human having hunkered down for the night.

The point of my evening stroll was the car retrieval, but I always relish the adventure of the unknown, a short walk plotted on Google but rife with a taste of Waikiki life, well heeled tourism and homelessness swirled in a Mai Tai of sea air. The ocean pushes against us all relentlessly, the heartbeat of the islands that has power against the weight of human industry that otherwise seems indefatigable when less challenged by nature.

Sticking to the itinerary, we awoke well before dawn and I ran into my first encounter with “Hawaiian time” when calling the valet for our car at 5 am. No answer, but I had built plenty of padding into the schedule of our outing to Hanauma Bay, a national park and nature preserve that houses the unimaginable combination of easily accessible and thickly populated reef.

Pulling in behind two other vehicles waiting patiently at the still-locked gate, I felt vindicated. We had read of the lines that start forming by seven and didn’t realize we would be evading the entry fee and the requirement to watch a mandatory preservation video but arriving so early.

This view faces south, so not ideal for sun rise viewing.

Aidan capering in Hanauma Bay

Both boys were thrilled by the feral cats roaming around and petted one that was feeding from a pile of food left on a stone wall. We laughed at the obvious irony that the most wonderful sight so far in Hawaii was some cats skittering around in the darkness. Our own feral is less amenable to petting than the one we encountered on that wall in the park, so perhaps the boys should be excused this particular weakness.

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Family portrait at dawn at Hanauma Bay, Oahu

Dawn came in inglorious fashion, but we got our pictures (mission accomplished!) and we got both boys on the water, Colin on a snorkel raft. Aidan had his first experience snorkeling with Ian, though the chilly water made him retreat to the sand before the sun had made much progress over the bay. I made him come out with me and he got hung up on the shallow reef. I looked down and noticed many small black sea urchins embedded in the coral where their spines were harmless. I mentioned the urchins to Aidan, who and asked what an urchin was. After I described them, he looked down and his head popped back up. “I saw a sea urchin and… No!”

I grabbed a flailing Aidan around the waist and dragged him off the reef and further into the bay. Much later, I discovered my knees and shins were covered in bruises and small cuts, but I had been able to get him to a deeper spot where he could see more fish and we eventually encountered a sea turtle.

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Colin’s shirt got blueberry yogurt all over it; he wasn’t just rocking his scars

Day 2: Approaching Maui

On our way into Port Kahului on Maui, I rounded up the crew above decks to view the dawn. I had been awake since 1:30 am, rocked awake by the movement of the ship that had put me to sleep a few hours earlier. After unpacking the bags, exploring the ship, and putting two miles in on deck six (one circuit is one-third of a mile), I found an impatient crew waiting for me back in the cabin.

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Windy early morning snapshot on deck 13 of the Pride of America

The boys complained of the cold (heavens! Seventies and breezy! You’d think our hothouse flowers lived in Florida) and barely tolerated a dawn photo despite a lovely older couple that took our picture. At that point, I started to get concerned about the dawn trip up Haleakala and realized that my goal of family dawn photos might be unsustainable.

During the day, we took the boys on a submarine trip, an aborted snorkeling outing, and had a very authentic experience related to our rental car. Anxious to get our hot, sticky (from shave ice) children back to the ship for an early dinner, we discovered that a man had settled in the scant shade under our car. He was curled up around the driver’s side tire. Ian was unable to bribe him out of the way, which wasn’t too surprising when the Maui P.D. finally arrived and tried unsuccessfully lifting him to his feet. However, the maneuver did extricate him from underneath our vehicle and we were able to drive away, with Colin proclaiming a mission to house the homeless.

Day 3: Maui, the Summit of Mt. Haleakala

In case it’s not evident, I should probably be reported to social services for dragging my children to what is widely regarded as one of the most incredible places on earth to experience the dawn. I awoke at 2 am (that’s 7 for me, which is when in normally getting home from the pool) to gather breakfast provisions from the 24-hour diner on the ship, which acknowledges this pilgrimage by setting out mini chocolate croissant and bananas during the wee hours.

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Dawn atop Haleakala

All of the tour guides warned of the hazard of cattle on the intestinal turns of road up the slopes of the mountain, but we had an unchallenged journey to the summit. It only barely dipped into the 30s and wasn’t windy, but we still had trouble staying out of doors. After appreciating the dark night sky (I honestly had hoped for more visible stars but enjoyed using Google Sky to show Aidan the constellations), we retreated into the car and I even got a nap before the eastern sky started to lighten.

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Good morning, Ra!

Colin was terrified of falling off the mountain, though we weren’t at a treacherous spot, and we drove away thinking only of the breakfast awaiting us with French press coffee and hot chocolate for the boys. I had originally planned to get breakfast at a well known spot, but we only sped by noting how full the parking lot already was.

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Proof that all four of us were there

Though we had technically achieved the goal of viewing the famous Haleakala sunrise, we left without the inspiration to experience more sunrises as a family and the rest of the mornings are solo ventures.

Day 4: Hilo, Hawaii

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Color peeking under the clouds

Our morning arriving in Hilo, on the big island of Hawaii, I made it outside to capture the first hints of dawn. I had hoped this morning would generate an especially lovely sunrise but I clearly wasn’t patient enough to allow it to erupt into the wild field of color that may (or may not) have awaited the more patient among us.

Perhaps more interesting on that morning’s perambulations was the stairway mural of an iceberg. I was surprised they went there, even though it’s been more than a century since the Titanic made its way to the bottom of the ocean courtesy of an iceberg.

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Maybe they have Titanic in the list of on-demand movies, too, those cheeky bastards

All I can say is that the Norwegians are a bold people, a fact that should not go unappreciated in the event we meet them in battle.

This was our “chill” day on a tour bus where we ended up making a special connection with our tour guide, Cliff, and encountering the wonderful aloha spirit of the people of (the island of) Hawaii.

Day 5: Kona, Hawaii

After stopping for the day at Hilo, the ship swings around to the western coast and the port of Kalui-Kona.

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Shades of gray over a waking Kona

It’s not great timing for sunrise, with the island to the east and the ship pulling in for a 7 am disembarkation by tender boat. The boys were excited to use the life boats to reach the dock.

This was a special day on many fronts deserving of more attention than I can give it at the moment. I will telegraph part of the magic with my favorite and most unexpected sentence of the trip/my life: a dolphin pooped in my face.

As always, it was the people who truly made this day special, both our friends from Dolphin Journeys and the wonderful Mersbaugh family, whom we are connected to through Camp Sunshine.

Day 6: Approaching Kauai

The trip from Kona to Kauai is longish and allowed for a leisurely perusal of the sunrise, yet I felt one photo sufficient to capture to moment.

On the aft of the ship, watching the emerging sun, I met a woman from Buffalo named Joanne. We shared the unexciting intimacy of those slow but irretrievable moments as well as the poignancy of life and parted with a tearful hug. It is never the sights or the physical wonders of the world but the connections between people that fill the well.

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Westward bound, the ship’s aft provided the perfect vantage

It is a lovely sight, to be sure, but lovelier still is the memory of sharing the reality of my existence with a stranger-who-became-confidante at the edge of the world.

We disposed the rest of the day visiting one waterfall and then exploring beaches before the obligatory luau experience. As adults, our favorite part was the train ride that included a tour of the agricultural treasures of the island. They keep some pineapples purely for tourism purposes (each plant takes two years to mature a fruit, and subsequent harvests produce a fruit half the size of its predecessor). The boys had little tolerance for the show, which was very late for us, though Colin evidently learned enough of the hula dance to reproduce it for his class back home.

Day 7: Kauai

Kauai, arguably the most beautiful of the major Hawaiian islands, is also home to the most maddening port security staff. After being told we couldn’t park in the designated handicapped spot within the port area (we were directed to do so in Maui), I was not allowed to drive to the handicapped pick-up/drop-off area to get Colin in the morning.

That makes this is our ADA non-compliant sunrise. Lovely, isn’t it?

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Looking out of the port in Kauai

As far as everything that followed, this really was an incredible day, even though I collected this shot hastily on my way to retrieve the car, which waited for me at a fitness center lot. The windows were adorned with pieces of paper politely informing me that I wasn’t allowed to park there and instructing me to speak to somebody at the front desk.

Our last morning of adventure couldn’t be tarnished by the crazy port staff, and we soon found ourselves whisked into the sky for an incredible helicopter tour of the island. Much of the landscape is impossible to reach any other way, and it certainly offers a special perspective by which to appreciate the stunning landscape. The land has been sculpted by water; the island contains the rainiest place on earth, and that relentless effluence has cut through the many layers of lava rock, simultaneously feeding the thick cover of vegetation.

Back at the ship, we visited the bridge, where Colin got to blow the horn. After, we had lunch with the captain and secretary. Soon enough, we were headed back to Honolulu to return to reality.

Day 8: Oahu, Honolulu Harbor

The ship pulled into Honolulu just at dawn, with the moon setting in the west just as the sun rose in the east. I have a panoramic shot that I had trouble perfecting. I could easily have missed the western half of the action but was running the circuit on deck 6. That repeated cycle afforded me the opportunity to watch a fat moon lowering itself into the water, casting a beam of silvery-then-orange light onto the dark ripples. On the other end, the new light framed Diamond Head and the modest skyline of Honolulu.

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East meets West as one sphere rises while the other sets

From the aft, I could capture the whole yin-yang effect in one shot. I won’t waste breath philosophizing about the symbolism or how I might view this in the context of my own life. It is enough to have the moment and to share it and to let it be.

Day 9: Chicago, O’Hare Airport

On our return to reality, we caught up with the sun in our sleepy Chicago layover. If we hadn’t been at the airport, I would have slept right through it on a plane. I considered this a bonus day, a last grasp to attenuate the magic of our trip.

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The morning light can even dress up an airport

On vacation, we did truly vacate our regular life. We walked into a house that had become unfamiliar in our absence. Our return brought back the realization that we hadn’t thought about it or about laundry or dishes or any of the other day-to-day tasks that alternately ground us and compress us.

For days, even with feet on solid ground, I continued to feel the sway of the ship. Over those days, my body gradually came home fully, as did the crushing reminder of the urgency of time and the changes that Colin will go through, delayed or not, as the juggernaut within trudges onward. It was easy to deny the realness of it all while we were away; we were allowed to suspend it within the self-contained existence of a vacation with safe and well defined limits.

A Vacation Ended

Going to Hawaii, we placed our concerns in a box and left them behind. Yes, we were aware of Colin’s situation and spoke of it freely, but the pressure and rushing panic of the immediacy of it all were neatly tucked away. This compartmentalization seems to come in waves anyway, but it occupied a large chunk of time while we were away. Getting home did feel good and comfortable, and settling under blankets in our own living room evoked the deep fatigue that followed our epic adventure.

Less than a week later, I was on the road again with Colin for a follow up MRI for the clinical trial. With his excellent health, we had no lurking concerns. It was hard for me to imagine that the everolimus wasn’t at least holding things at bay.

However, the scan results came back as another hot wave of reality. The long wait for Colin to get out of the scan, while a good opportunity to get some work done, also gave me the chance to consider that things were not as we hoped. The tumors have not stopped growing, generally doubling in diameter in two months. However, we are lucky in that Colin has continued to be asymptomatic all the same, and we are committed to making sure that Colin gets to take advantage of this time as long as we can keep him feeling good.

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“How do you feel about going home?”

We have no current plans for treatment besides, possibly, a very focused radiation treatment on one particular tumor (the one sitting in the tract of the March surgery, which is causing edema to the surrounding brain tissue). Colin’s quality of life is currently excellent and there is nothing that offers enough promise to pay for it with more days in a hospital.

We are watching the sun rise still, the gentle wash of pastel light signaling the inexorable rise of the orb that will eradicate the last traces of night. The stars sparkle still and I will hold onto the shape of the constellations as long as I can, as long as they will let me find them before the sun steals them with the overwhelming brilliance of the coming day.

6 Comments »

  1. As always, I love reading your blog. Love, prayers, hugs and kisses for you all!

    Val

    Comment by Valerie Raymonds — January 29, 2016 @ 11:44 pm

  2. I also would have endeavored to catch each sunrise, one of my favorite things when fishing. Godspeed!

    Comment by Mark Hayward — January 30, 2016 @ 1:29 am

  3. Very beautiful! I loved the pictures of the sunrise. That would have been my morning pleasure. Thinking of you all!

    Comment by Betty Johnson — January 30, 2016 @ 7:19 am

  4. There is something wonderful about a sunrise. When I was in college I would occasionally drive to the Eastern Shore and lie on the beach to watch the sun rise. Colorado sunrises aren’t quite the same, but I am an early riser and a sunrise lover! Now, I will be reminded of your family during my morning meditations :).

    As usual your lyrical prose entwined with brutal candor make me smile and cry. Your family looks wonderful and strong. I love the pictures, especially the first one of Aiden alone in the early morning ocean. And I am happy that Colin looks so good and happy.

    Love to all…..

    Comment by Diana — January 30, 2016 @ 9:38 am

  5. Lots of love to our modern-day sun god and his family.
    The Taylor family

    Comment by Belle T — February 8, 2016 @ 11:27 pm

  6. I had the wonderful opportunity to get to know Colin during Summer School in Danbury, Ct one year and have tried to follow his progress ever since. He is an inspiration to anyone/everyone. He has grown since I last saw him but the smile remains the same. I miss him so much every year when summer rolls around and I sign up to work the program. I sincerely hope he continues to bring as much joy to others as he did to me. He may not remember me but I assure you I will never forget him. Please give him my love and best wishes to you all.

    Comment by Stephanie P. — February 19, 2016 @ 8:54 pm

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