PURPLE ENCOUNTERS
Grief is a snake that seeps in silently as it strikes. Although not venomous, its bite stings badly and pain heightened as we endure our first round of “the most wonderful time of the year” without our family being complete. We find refuge in Purple, Kiki’s favorite color and its symbolism of his spirit. Full of love, strength and good vibes – our family motto.
Our purple encounters happen regularly. Purposely placed. At times when he senses we need him for levity and peace in that moment. To get us through our day. One encounter that left a huge impression occurred while commuting on the subway. Seated across from me was a man wearing two different colored socks. Purple was one and gold was the other color. A very significant combination as they were the primary colors of the floral arrangements at Kiki’s viewing. We asked those attending the ceremony to wear purple in his honor and his final outfit included his famous gold sneakers. (Coincidently enough, gold represents childhood cancer and he wore those sneakers out during our daily walks while in-patient on pediatric units 6S and 6C. We even snuck into other units for fun and got away with it …most of the time.) The man got off the same stop, walked slightly ahead of us, oblivious to my huge smile and teary eyes. I reached my destination first and stood on the sidewalk until I lost sight of him.
I interpret encounters as Kiki’s hugs, snuggles and kisses. His affection towards our family (and those lucky to earn it) was always over the top incredible and hasn’t slowed down. Even now in my present state, the use of retail therapy of purple clothes, jewelry, or lavender scented candles by Beloved Bath (Kiki was diagnosed at 2 years old with autism; supporting this business ensures meaningful employment for people with autism) gives me the feeling of being blanketed by Kiki’s essence. Surrounding myself with his color is a way to regulate my mind and body from the kicks and punches that grief throws. A cue to take a deep breath, keep my hands up, proceed to the center of the ring and onto the next round of living and moving forward.
“To the well-organized mind, death is but the next great adventure.”
– Albus Dumbledore from Harry Potter and the Sorcerer’s Stone
Another strong connection to Kiki is the number 5. He gave the best high-fives , he will be forever 5, and on Friday, May 24th, the fifth month of this year and final day of the working week, at 5:10pm, he went on his next great adventure.
On a micro level, Kiki spent the previous Friday in the hospital because of fever and his breathing rate was elevated. He spent 3 days in-patient and underwent all the bells and whistles a child with complex oncologic, respiratory and brain hemorrhage history would receive. Macro level, he was recovering from 2 brain surgeries and multiple radiation sessions that were completed last March and April. This was our 3rd attempt, using traditional therapies (surgery, radiation and chemotherapy) to eliminate PPB/Pleuropulmonary Blastoma that spread from the origin tumor (left lung) to his brain in April 2023, and kept coming back every 5 months. Even after a successful lobectomy (surgical procedure to remove origin tumor), 1 year of rigorous chemotherapy and other intensive interventions, the brain metastasis was an arch enemy rarely defeated.
After being discharged late afternoon on Monday, May 20th, Kiki experienced a sudden surge of energy and by Tuesday he gained some strength, mobility and independency back. His fine and gross motor abilities were affected since the last rounds of surgery, radiation and severe weight gain from steroid treatment. I was looking forward to sharing his progress with his oncologist, Dr. Alexander Chou during the follow up appointment on Thursday at the outpatient oncology clinic of NYP/Weill Cornell, but never got that chance.
Wednesday afternoon, in his resilience and delight, we walked the short distance from our car to pick up Ayrton, his 10 year old brother from school. It was a huge achievement, and I think Kiki understood from the adulation Ayrton gave him after noticing that he didn’t use his stroller. His huge smile (similar to the Keanu’s Korner cover picture) was full of pride in himself as we walked back to our car. When we returned home, after eating a favorite afternoon snack of chicken nuggets and orange juice, watching an episode of Bluey, shortly after 5pm, in a blink of an eye, our happiness evaporated. Kiki was in pain and chaos unraveled. I called Dr. Chou, who has coached me during every at home event that required bringing Kiki to the ER. We were accustomed to a plan wherein Kiki received medical interventions, up to 5 days in the hospital and a blood or platelets infusion before discharge. But this time it was not going to play out that way. Kiki’s brain CT scans verified the absolute worst news that urgently made its way to Dr. Mark Souweidane. He was on his way to the airport, so he abandoned his travel plans to return to the hospital and perform emergency brain surgery.
Both of Kiki’s doctors provided immeasurable, world-class dedication in service to their respective specialties, to our family, and in caring for Kiki. So when our final piece of hope was shattered, my husband Frank and I made the only decision that allowed for Kiki’s peaceful transition. Guided by our faith that seeped into the overabundance of meaningful events and connections, the synchronicities to the number 5 lead us to choose Friday at 5pm for Kiki to be unencumbered by the mechanical ventilation supporting his breathing, and his ascent to heaven begin. Lying in bed with Kiki and snuggling his face, kissing him on the spot between the root and bridge of his nose and holding his hand, we witnessed what I can only describe as the most sorrowful yet sacred moment as parents. At 5:10 PM our brave 5 year old, took his last breath and entered his next great adventure …Heaven’s Playground.
“When coincidences pile up in this way, one cannot help being impressed by them.”
– Carl Jung, analytical psychiatrist
This playground recording from October 2020 was the meaningful experience I drew from during those last moments with Kiki. Where I envisioned his guardian angel took his hand and they went for a walk to the playground. The angel chanted “Let’s go Kiki” as he climbed the stairs until he reached the top of the slide, which was purple of course. As he scooted forward and prepared to go down, he took a pause and transformed to the strong, curly haired boy with his golden sneakers on. Lifted his arms high over his head and slid down. Letting out a “woohooooo” from the top of his lungs. At 5:10 pm, he reached the bottom of the slide and looked back for affirmation. In our place was Jesus/the Son of God who vigorously applauded, while Mary/His Mother waited on the side to receive Kiki’s high five and encouraged him to continue exploring his new playground.
We dedicate 5:10 PM as “Kiki Time” -our daily moment of remembrance or quiet reflection. It also symbolizes our courage, love and hope for our collective future while grieving and keeping Kiki’s spirit and memory alive within us. Until it’s our turn to race him down the slide and give a long overdue high five to him.
May you find your own “Purple” and “5:10 PM.” Let its synergy guide and comfort you during the holidays, when the loss of your child can sting harder. “Let him enter the lion’s cage & find a field of lilacs. Let this be the healing & if not, let it be.” -Little Prayer by Danez Smith
💜 Kris, Ayrton, Frank and Kiki
