Category Archives: Trisomy 18

O Death Where Is Thy Sting?

HybridGuardianAngel2” 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.

Advertisements
Tagged , , , , , , ,
%d bloggers like this: