O Death Where Is Thy Sting?

^” Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light and momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.”-     2 Corinthians 4:16-18

Today will be difficult  so I am writing. It’s my drug of choice in times of strong emotion and particularly soothing right now with a cup of hot green tea at hand, in the quiet of the earliest morning before sunrise.

Later today we will bury Harrison. His obituary says: “He passed peacefully in the arms of his family after a beautiful and unforgettable hour. His life was a brief gift to all that loved him and he will never be forgotten.” Harrison was the newborn son of my nephew Patrick and his partner Diana.

When Patrick was born 28 years ago, my brother (his father) and sister-in-law let me come into the delivery room with them. Patrick came forth after the normal struggle of childbirth and we laughed that he was a “conehead” because his pointy head had been squished in the birth canal during his entrance.

Patrick grew up to be a fine man. I served as Patrick’s godmother as he entered the Greek Orthodox faith through baptism and chrismation.  He became a church altar boy and made the family proud with his sweet and gentle demeanor.  I still see the faces of Patrick and my son Clint in altar boy robes as they flanked the casket of my father at his memorial service,  tears streaming down their young boy faces in the light of the candles they held.

Patrick and Diana made a family with Diana’s young daughter Mya, and their son Lincoln who will be 2 this year. They were delighted to learn Diana was pregnant again but their joy soon turned to shock and sorrow when they learned their infant had Trisomy 18, a life threatening genetic disorder that causes devastating medical issues and often death.  Undeterred, they named their in utero baby boy and we all became acquainted with Harrison.

From the moment they named him,  Harrison became a person.  A person who was a member of our family, and for whom we began to pray and worry.  Patrick and Diana started a gofundme account to help with the inevitable medical expenses and the cost of  sole provider Patrick’s projected absence from his job as a chef near their home in Northern Iowa. Their page kept us all posted on Harrison’s developments.

From the beginning the young parents were committed to seeing Harrison all the way through his birth. Abortion was mentioned by well meaning relatives, but they were champions of life from the get go. After all, this was not just a fetus; it was Harrison. As a pro choice individual I have to admit, Harrison brought me to a new understanding of life and I am more conflicted than before about this delicate issue.

Harrison’s parents sought the best medical treatment for his imminent arrival. They were connected to a hospital well versed in Trisomy 18 and the doctors were strong partners in their quest to spare no effort in helping Harrison. The ultrasound confirmed abnormalities would be life threatening once he breathed his first breath. They were encouraged with small bits of hopefulness such as the determination that despite other challenges, his heart was strong and mighty.

Spiritual support came forth. A Greek Orthodox monk friend saw Patrick’s Facebook post  and rallied the monks at his monastery. “We are praying for Patrick, Diana, Mya, Lincoln and Harrison each specifically and by name,” he reported.  Graciously they also volunteered a burial plot at the monastery for Harrison should it be needed.  Being covered in prayer, the family felt supported in ways beyond the reach of a gofundme page.

At 33 weeks, “Harrison took things into his own hands,” stated Patrick’s Facebook post and Diana went into labor.  An unusually fierce snowstorm had struck and they were unable to make it to the hospital that was awaiting Harrison’s arrival. Instead a nearby hospital would have to do, and Diana gracefully demanded a C-Section when the staff who were not as familiar with Harrison’s medical condition tried to get her to have a vaginal birth.  Harrison’s siblings Maya and Lincoln were along too since the grandmothers could not make it through the storm in time to babysit while mom and dad went to the hospital.

The obituary had it right.Harrison lived an hour.  He was surrounded by his family. His medical conditions were too substantial to sustain life.  Even the more elaborate hospital couldn’t have helped.  A professional photographer came in to take his baby pictures. He was wrapped in a blanket and stocking cap, showing only his perfectly formed, beautiful angelic face.  When Patrick sent me the picture all I could say was “There’s Harrison!” as though I had known him my whole life.

“I don’t want to say goodbye to him,” Patrick texted yesterday when he and Diana were on their way to the mortuary to see their son for the last time. Harrison is coming home to be buried in the same cemetery as my father.  To conserve funds, Patrick will drive his son in his tiny casket from the mortuary three hours to the grave site in West Des Moines. “I’m leaving soon to get my boy,” he texted me moments ago.  He is bringing his son home.  Harrison will be buried in the “Garden of the Innocent” not far from the mausoleum where my dad rests, and amidst other babies who have died.

Later today, our immediate family will gather at the gravesite, along with our monk friend and our Greek Orthodox priest. On St. Patrick’s Day we will bury Patrick’s son, our beloved Harrison. He is every bit as cherished a member of our family as the old grandparents we have buried before him. It’s hard to explain how one can feel so connected to a spirit who only passed through so briefly. It’s something I have never experienced before in my life, and has been quite unexpected. I like to envision my father holding his great grandson Harrison in his arms with a big smile, like I saw him hold my three adult children when they were infants.

Harrison’s  innocence, his courage, his radiance, the devotion of his parents, his reminder to all of us that life is fragile and every moment matters, and his valiant struggle to breathe in this beautiful gift of life for even only an hour has profoundly changed us.  Godspeed my great nephew.

We love you Harrison.

O Lord Who watches over children in the present life and in the world to come because of their simplicity and innocence of mind, abundantly satisfying them with a place in Abraham’s bosom, bringing them to live in radiantly shining places where the spirits of the righteous dwell: receive in peace the soul of Your little servant Harrison, for You Yourself have said, “Let the little children come to Me, for of such is the Kingdom of Heaven.” Amen.

Truckstop Angel

I grew up as the only girl in the family, the oldest, with two younger brothers rounding out the sibling lineup. Dan was born 18 months after me and Jon two years later. We grew up outside of town on an acre of land, and my brothers had built in playmates while I largely sat in my room and read books.

The boys would wrestle and Dan was the instigator. Jon would cry and run to mom and to this day he remains a mama’s boy. Dan was rough and tumble, always getting into mischief,  handsome, blue eyed and blonde, an aberration in the otherwise olive skinned family.

In Greek families the oldest boy is the prize. My dad embraced Dan’s birthright and the two were symbiotically connected. Dad was a prominent lawyer and his skills came in handy as Dan got into minor legal scuffles, including a few stints with jail time. Once, my dad told Dan he had arranged through his connections to have Dan do time on a weekend, which happened to be Dan’s birthday.

“I called the bailiff and the jail is overbooked that day; you will go in and get out right away due to overcrowding,” he’d told my brother.  Instead, Dan arrived to find “plenty of room at the inn.” “I figured if you served time on your birthday it might have an impact on you, and keep you from getting in trouble again,” Dad had announced when justifying the bait and switch.

Neither Dan nor Dad took care of their health. They were both heavy smokers, both liked to gamble, both ate lots of junk food and sugar and neither had any workout routine or ever set foot in a gym. Dan had been the country club junior golf champion in high school and it landed him a college scholarship to the University of New Orleans where he drank his way down Bourbon Street, ultimately terminating his college path. He dabbled in assorted drugs and alcohol and identified himself once as the “72 step man” having done 6 separate 12 step programs.

As Dan became the focus of our family, I faded into the background diligently studying, being a “good girl,” graduating at the top of my class and ultimately getting a law degree. I married and had three children and moved to Scottsdale, Arizona drifting apart from both of my brothers largely due to our lack of commonalities and the distance, although I always felt a strong affection especially for Dan.

When my children were small my dad came to visit us in Arizona with a cold that he couldn’t seem to shake. A friend who was an ER doc snuck him past the line at a busy Phoenix hospital and did a chest X-ray. I got a call that day telling me my dad was in dire straits physically and it was likely he had a terminal lung disease that had progressed extensively.

Things became a whirlwind. My mother shut down and was unable to cope and as the family rock I did what I do best. I took charge and mobilized, making a room for dad in our home and I partnered with hospice to care for him. My kids gathered around “Papou” and we made him as comfortable as possible.

Dan was devastated and for a long time stayed in Iowa saying he could not face visiting knowing of dad’s impending death. Soon he came out and spent time with Dad, even mustering up enough energy for the two of them to go to the casino with Dad in a wheelchair and full oxygen mask gear. I shuddered to think that a random casino cigarette smoker might blow up Dad and his sidekick with a booze laden flick of an ash but they lived through the ordeal. Dan left one night and went to a Phoenix tattoo parlor where he had the artist draw a heart that was in the midst of breaking and then brand it on his shoulder.

Dad died and we flew him back to Iowa for the funeral. Dan came to the funeral with a limp and a hand that hung abnormally. The scuttle butt was that he had gotten drunk and fallen asleep on his limb and didn’t wake before the circulation was cut off. He had been living in his car and was getting by with odd jobs. A doctor friend of my parents who observed Dan at the funeral came up to my mom and suggested that Dan be tested for Lou Gherig’s disease. My mother was devastated.

I flew back to Arizona after the funeral to get my kids situated and then flew back to Iowa to help figure out Dan’s situation. He’d been diagnosed with MS and the lawyer in me again took charge getting him the social security disability he needed, helping him get Section 8 housing, buying him a decent mattress and organizing other medical and social service benefits. Once he was situated, again, I spent very little time with him focusing instead on raising three children of my own and trying to deal with my emotionally fragile mother.

Ultimately I divorced, and moved back to Iowa where I would occasionally see Dan at Thanksgiving when I would cook for everyone and he would come. His MS worsened and he limped badly, finally using a walker. Autoimmune diseases lead to other autoimmune diseases and he soon had psoriasis all over his face and body, and had developed Type 2 diabetes. His physical condition worsened each time I saw him.

About a month ago I got a phone call. Dan’s physical therapist had noticed a strange lump in his neck. Further testing revealed the worst: Dan had cancer of the tongue that had spread into his lymph nodes. All the autoimmune complications made his case all the more difficult so he decided be treated at the Iowa City hospital, a teaching institution at the University of Iowa two hours away.

It was like déjà vu of my dad.

My mother went into high anxiety that makes her catatonic and histrionic all at once. Dan is single, having divorced years before from his waitress wife, and his adult son lives out of state and has a new baby of his own. I looked at Dan’s face which is the same face of my dad, and saw in his eyes the same fear I’d dealt with fourteen years earlier with a man that was at the time just ten years older than Dan is now. And I did what I always do. I took charge.

For the past few weeks Dan and I have been on the road back and forth to Iowa City. I cancelled clients and mediations,  rearranged and juggled calendars and other obligations.   I have become his medical overseer attending meetings with each specialist: internal medicine, otolaryngology, radiation, chemotherapy, neurology, and on and on. Meetings involve Dan describing symptoms and answering questions and his lawyer sister hunkering down with doctors to dissect medical terms and protocol. I take copious notes, ask intelligent questions, and then translate for Dan and field phone calls from my hysterical mother asking in anxiety and anguish “Is Dan going to die?!”

The hospital is a finely tuned machine and they identified the cancer had spread to his lymph nodes so they immediately mobilized for two surgeries: one on the lymph nodes and one on the tongue. Before they would treat the tongue cancer however they examined his teeth to be sure there was no risk of infection or other complications. Dan had not been to a dentist in at least 15 years and 7 teeth had to be extracted, gums had to be drilled down and periodontal disease eradicated. Surgery #1 would be complicated oral surgery.

Dan and I traveled to Iowa City the night before the oral surgery where I took him to the most expensive steakhouse in town. We ordered everything on the menu that required abundant chewing as a dental rite of passage; crunchy calamari appetizers, big juicy steaks, crispy salads, lobster tail and I savored a perfectly chilled gin martini. We talked and talked and laughed about our mutual upbringing and life travels. Dan kept saying, “This bill is going to be really expensive Sis are you sure you want to do this?” I felt ashamed that I often dine at fine restaurants and the bill would not be out of the ordinary for me on any given weekend.

Why hadn’t I been closer to Dan all these years? Despite our stark differences in life choices and paths we share the one gift we both got from our father. We are both loving, kind, compassionate people with big hearts. And God specifically chose us to be siblings in his perfect design for our lives.

The next morning I took him for his oral surgery, dutifully wheeling him in the wheelchair as I had done for prior visits  during our intensive time there. The nurse took him inside and I sat waiting in the waiting room, returning client phone calls never letting on that their lawyer was handling their case while she sat in deep grief with strains of post traumatic stress, intermittently praying to the God she is connected to so deeply, while her brother began his cancer medical journey.

Some hours later I was called in to find Dan in his wheelchair with blood soaked gauze in his mouth, moaning softly. I am grateful that somehow I am made of “tough stock” and could calmly focus and mobilize. “In one hour take out the gauze, get him a milkshake and give him another pain pill. If you don’t get these pain pills on board it will be hell,” the nurse advised.

I wheeled him to the car, put him inside and buckled him down, silently praying for an angel escort and began the two hour drive to Des Moines with a moaning bleeding brother riding shotgun.

The drive from Iowa City is  uneventful with just a few reasonably populated towns along the way. I passed one decent sized city that I knew would be milkshake laden but glanced at my watch and it was only 40 minutes in. Because I am a “rule follower” I kept going, trusting that in 20 more minutes I would hit another town even though at that time I had lost all sense of direction and couldn’t even tell you where I was.

At the 60 minute mark I saw a mile marker with a miniscule sign that said “FOOD” and I pulled off the interstate to come upon a non-descript mini truck stop convenience store. Dan moaned as I told him I was going in for a milkshake and he was so delirious I’ m sure he didn’t hear me. I locked the car door and hurried inside, shaking mildly.

As I walked in, an overweight woman was uncannily walking right towards me with a big smile and her nametag displaying that she was Angie. Angie asked me, “Can I help you?” and immediately I burst into tears sobbing uncontrollably letting out all the stress and anxiety that I ‘d been holding in for weeks. Angie put her arms around me as I blubbered about my brother and spilled a stream of consciousness that was largely based on the theme “why can one person have so many things go wrong in his life when mine is so blessed?” a sort of survivor’s guilt manifesto.

“And I need a chocolate milkshake!”

Angie turned me around and low and behold there was a homemade milkshake machine like I have NEVER seen in a truckstop convenience store. She took me to the machine and began to mix the milkshake telling me that she had cared for an ill relative, that her kids came out perfect even though she was an inadequate mother and her sister’s kids were all deviants even though her sister was perfect.

“You and your brother are each other’s teachers. You don’t have to know what it’s all about while you are on this side. Just don’t miss it.”

I hugged her again tightly and didn’t want to let go. I wanted Angie to take me home and make me milkshakes and tell me all about the meaning of life instead of getting back in the car and driving to Des Moines for what would be the first leg of a lonely and dark road with my brother.

Angie took me to the counter where I paid and she reminded me to get some water for myself. “What is your name and your brother’s name?” she asked.

“I am Kim and he is Dan,” I said and she walked me to a secluded corner of the store passing a wide array of beef jerky sticks, chips and processed foods.

There, tucked away on a shelf, was a brightly decorated mini Christmas tree with many mini decorations. Angie pulled off a decoration that resembled a rectangle pill box and she wrote the name Dan and Kim on a sheet of paper tucking the names inside the pillbox and shutting it tightly. Then she showed me the front of the box. “Prayers” it said, and she put it back on the tree.

“Now go take care of your brother.”

I went to the car, found a delirious Dan, removed the bloody gauze and slopped the milkshake down his throat with a big fat pain pill hidden inside one of the gulps. I tried to quickly organize my space, clean up spilled blood and then I got in the car and drove home to begin the recovery before his next surgery.

The next surgeries are coming up and there will be many back and forths to the hospital for them, and the radiation and chemo after that. I wonder if I could find the truck stop convenience store if I looked for it. I wonder if it even exists, and if it does, if Angie is there. A part of me imagines if I found the place and asked for Angie they would say “there is no Angie that works here.”

And I promise you her name was Angie. It’s short for Angel. God reminded me that He has this handled, and that I am not alone.