Sunday, we were pleased that Ewan’s beaten-down body found a comfortable position in which to rest in bed. Saturday night had been another exhausting night of chasing away body-aching, mind-waking pain. He’d stir, shift, squirm and lean to try and find new positions from the limited number of ones suitable for a hurting, bed-bound body.
Through the discomfort, he repeatedly and heavily exhaled a call for “banana yogurt” and “2% chocolate ice cream.” To my panic, we were fresh out of Danimals banana-flavored drinkable yogurt. Fortunately, a long-time friend who had flown in from Denver, Emily, was sleeping in the next room and answered the distress call.
She sprang up and sprinted to the store even though it was 4 a.m. Ewan got his yogurt drink and chocolate ice cream. With a satisfied, full belly and enough morphine, he was able to fall into a deep sleep that lasted through Sunday.
One of Ewan’s pet peeves is when we work on puzzles without him. It’s been 51 days since Ewan’s sudden admission. In the week preceding his hospital stay, we worked together on lots of puzzles. The current one covering the living room coffee table is a vibrant, 1,000-piece puzzle of rainbow-colored popsicles. The puzzle was a gift from Chicago Grandma, Grandma Charolette; on a special trip with Ewan; she purchased it at our local book store, Island Books.
Images of cool, juicy popsicles cover the surface. Some have chunks of kiwi or strawberries hidden inside these frozen fruit juice snacks on a stick. Ewan’s puzzle mastering strategy is to organize pieces and fit them together from easiest to hardest. The fruit pieces, along with the blue and purple popsicles, were on the easy side to fit together because they stood out.
Ewan starts with the outside border. He works his way from outside in, easiest to most challenging; Ewan is a snappy and sharp puzzle-assembler. However, with this particular puzzle, the red and orange popsicle images tripped him. Pieces were sorted by Pantones then put aside for Ewan to complete when he returns home.
He just needs more time.
Yesterday was Sunday, a natural day of rest. Unfortunately, yesterday changed to a day of unrest. It started late in the night when Ewan’s every breath required a new, forceful exertion in spite of his adequate positioning. I sidled up close to keep ears tuned in and eyes watchful.
With Harry Potter and the Deathly Hallows in my lap, I flipped back to Chapter 24: The Wandmaker. Uncle Jonathan and Aunt Justine, who’d come in from New York, had faithfully delivered on bedside reading duty before departing home. This meant I needed to backfill on a few chapters of information on my own before I could get comfortable and be in the know enough to go forward on the bookmarked chapter.
Reading about wands filled me with an urge to dig up Ewan’s wand (buried in a bag on one of the hospital shelves) and put it in his hand. One of Ewan’s greatest joys in the past five months was his wand experience at Ollivanders at The Wizarding World of Harry Potter, Universal Studios. Sibling wands of dragon string and ash chose both him and Elena because, as we all know, “the wand chooses the wizard,” but not before the wands misfired and blew books off a shelf and withered a houseplant for being in the wrong siblings’ hands.
Once wands were swapped, all was righted in the wizarding world.
Instead of getting up and getting that wand, my own worn-out body chose to stay in it a warm spot in the bed beside by my brusquely breathing buddy. I took Ewan’s hand in mine and silently read.
It happened just after midnight, Monday morning. There was one abrupt exhale, and he uttered “Mom.” In the same moment, his breathing ceased. I knew his heart had stopped beating.
Wide-eyed, I let go of his hand, moved my hand to his heart and called out for Michael; Dad was resting in the other room. Nurse Michelle, standing on the opposite of the bed, having just finished midnight lab draws, made eye contact with me and asked, “Want me to go get him?”
17 seconds later, Michael was at the foot of the bed. With utter shock and uncertainty hanging thick in the air, we glued our eyes on him. Gently and without warning or any other movement, Ewan gave one last declaration, “Dad.”
Still and quiet filled the room. Ewan found peace, calm and absolute comfort. All pain washed away at once. An oncologist came in and confirmed no heartbeat as of 0024.
She granted what we wanted most but could no longer have – all the time we wanted.
We bathed and dressed him. Chicago Grandma, who was at home with the older kids, woke them when she received our call and drove them to the hospital. Elena, Ewan’s 11-year-old sister, insisted we all play a round of Uno. We dealt him in. No one peeked at his hand.
While we played, we toasted him with Danimals, Gatorade, chocolate milk and lemon San Pellegrino. We shared memories and cried in anguish, longing and whole-hearted grief. After dazed, red-eyed goodbyes, the kids went home, but not before Elena cursed every object in the room. “I never want to see that curtain again. I never want to see those latex gloves again. I never…” We promised her she would never have to come back.
Torin and Wesley helped take belongings to the car. Elena needed school. Torin and Wesley needed sleep. We needed quiet with our baby boy.
Still, we needed more time… there is nothing worse than leaving a children’s hospital without your child. Our heads are spinning back and forth between crushing sadness and breathtakingly beautiful memories.
We left Children’s with Ewan in our hearts but not in our car. In between the whiplashing emotions, we have small moments where we share in Ewan’s peace, calm and absolute comfort. Then the whiplash starts again, and we wish for more time.
Two sections in this puzzle bring us full circle:
1. The oncologist who was working the night Ewan was diagnosed with leukemia, the one who broke the news of Ewan’s horrible disease – came back on service this morning. 22 months ago, she had hugged us and said she was so, so sorry and then she had said, “Your son will be cured.”
No one could have known his outcome; everyone did everything in their ability, but her words couldn’t have been further from the truth. Monday was the start of her 10-day in-service rotation. Once again, she hugged us and said she was so, so sorry.
2. The last thing Ewan ate was a red popsicle. I remember pressing it to his lips Sunday evening. In the early hour of this morning, when we gave his body its last bath, we washed off the red gradients streaks that had dripped and stained his chin and chest. It reminded me of the puzzle he had worked on. It reminded me of home.
Now we are home. Still and quiet fill his room, our house, and our hearts. Its eerie, sad and unbearably emotional to be home without him. But we now busy on the lookout for signs. In his last week, we asked him if he would send special signs: a bird, the wind, sunsets, etc. – how would he communicate with us?
He did not comment. If you were dying would you know?
But I am sure, as we drove up the main thoroughfare this morning, for the first time ever without him in the car, he communicated clearly and gave us a sign that he is with us. It fact, it was an actual sign and hard to miss – a letter board in front of a congregational church. It read: SHORT LIVES GLOW WITH HEARTBREAKING BEAUTY.
Thank you, Ewan, for your heartbreaking beauty during your short life. Thank you for reminding us that you are still here, still listening to Harry Potter, even if you are invisible to anyone else. We will always be puzzled by why this happened.
Two nights ago, I read to you Lily Potter’s words from Chapter 34 and I meant them as my own:
“You’ve been so brave.”
Photo credits: Author’s Own
About the Author: Jenny is a writer, scientist, and mother of four. She enjoys traveling, running and, above all else, sharing about her 8-year-old Ewan who died from acute lymphoblastic leukemia May 7, 2018.