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The Gift From My Son’s Nurse That Came During My Greatest Time of Need

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Standing in the lobby of the church, I was speechless. My mouth was wide open in awe. I never imagined when I unwrapped the gift what I saw would consume all of my heart, giving me comfort in the greatest time of need.

A square frame held the majestic beauty of the perfectly mixed yellow, orange and brown watercolors, forming a fierce, strong, brave and beautiful lion. Through this beauty, the painting instantly brought alive the spirit and soul of my beloved son, Luka, just as we prepared to celebrate his life during the church service.


The lion watercolor painting.

The painting — of a regal lion with one eye covered staring deeply into the soul of the viewer — was a gift that changed our lives. The painting symbolized so much more than what the eye can see, for it’s worth more than a thousand words, especially when you consider the “no coincidences” situation that helped create the masterpiece.

As soon as I saw the painting, I knew exactly where it belonged. I instantly marched down the church aisle and placed the framed lion watercolor just beneath the simple, small white coffin where Luka was laid to rest. This lion represented Luka to the world for eternity, staring through that one eye, which I felt gave me and others who celebrated his life strength and permission to go on.

And even though it left me speechless, this painting is worth more than a thousand words. Let me try to explain why. Before Luka’s celebration of life memorial service began, my husband and I welcomed guests in the church lobby who came to pay their respects. We knew we weren’t going to make the same mistake and hide away from everyone like the last time we had buried a child, Maks, who was stillborn.

This time, we wanted to welcome everyone’s presence and show respect for our dear, sweet Luka The Lion who fought bravely his entire life of 21 months with a rare, undiagnosed primary immunodeficiency disease. Through our journey, we learned the importance of welcoming people in our lives by creating a Lion’s Pride and Circle of Love. In the end, this is all that matters.

At just under a month old, we knew that Luka had a life-threatening disease of the white blood cells, which indicated his bone marrow wasn’t compatible with life. We were told to wait and see what his story would be, for only Luka knew, and in the meantime, his dedicated doctor diligently treated Luka’s unusual symptoms.

Yet, the list of complications kept getting longer each month. From needles to surgeries to chemo to vital checks to oral meds to scans to endless infusions, our Luka showed us he was also born with something that would help him in this fight for his life. Luka was born with the strength, resilience, bravery and the beauty of a lion. And that’s how he gained his nickname — from his spirit animal.

For most of Luka’s life, he had adorable curls and a smile that would melt anyone’s heart. He was considered by his brilliant, intuitive doctor to be a genius. I think he was right. For Luka — as do many people with rare and chronic diseases — had this special quality. He was a wise soul whose radiance everyone he met could see.

He was the type of person who lived a lifetime in a short 21 months. The type of person I could write thousands of words about and just get started. So, to witness the beauty of this painting that captures Luka’s soul as a lion allows us to see more than thousands of words. Yet, to really understand how incredible this painting is you must know the story behind the talented artist who also serves as a beloved sister, expert PICU nurse and dedicated servant — the remarkable Bren.

Bren took care of our Luka — and our family — through the most compassionate palliative care possible by making the PICU a peaceful place and anticipating what we needed without us even knowing. Bren knew what hospital room in the PICU would be best for us when we were transported with little time left. Bren knew when to listen. Bren knew when to share. Bren knew what to tell doctors. Bren knew to tell me to eat and sleep (although I didn’t listen, we had a good laugh about it). Bren also happens to be a dedicated sister of a dear family friend who has a life story that relates to ours. Yet, beyond Bren’s gift of capturing Luka’s soul through the art of painting, she gave us the gift of reminding us that there are “no coincidences” in life. This “no coincidences” mantra will stay with us forever.

We came to Bren at the PICU at a difficult time to say the least. I had just found out that Luka’s organs had started to fail after battling a virus for two months straight following a bone marrow transplant with severe auto-inflammatory complications. Luka essentially wasn’t to be able to speak, walk, eat, play or be himself for the first time in his life — despite 10 hospitalizations and a lifetime of daily and weekly outpatient clinic visits.

Sadly, Luka’s body just couldn’t take it anymore as there was a specific lab value, which indicated his body had reached toxic levels. He didn’t have much more time with us, and we were on our way to the PICU, suddenly leaving our home away from home on the fifth floor where our nurses had essentially become family.

Even though two months (and perhaps his entire life of 21 months) led us to this moment, it was a bit rushed and chaotic as it always is when you’re being transported. As we reached his PICU room, I turned my head and all of a sudden blurted out to the nurse standing next to me, “You are Bruce’s wife!” Followed by an immediate response from her of “Sister!” Then nurse Bren and I laughed because in the state I was in, my brain meant sister, but I said wife. She understood. She told me there “are no coincidences in life.” And that’s when I realized the nurse who received us was the sister of a dear family friend who supported us when our first child, Maks, passed away and was a mentor in my husband’s YMCA career. No coincidences, indeed.


Julia’s son, Luka.

As soon as I was comforted by Bren being our nurse in those last hours — which turned into 48, longer than doctors anticipated — Luka showed some remarkable signs of life. Perhaps he had some clarity, as I believe many people do when they transition. Yet for Luka, it could also have been a result of his genius wisdom. He pointed to himself, uttering “Luka.” He pointed to the wall behind me and said, “Lion.” For there was indeed a lion painted on the wall that even I hadn’t noticed until he pointed it out. It’s as if Bren knew to put us in the lion room when she prepared the PICU room for us. Yet she didn’t know. Or perhaps, that’s another sign there are “no coincidences.”

In this burst of clarity after he saw the lion — a nickname he proudly carried his entire life — Luka waved “bye bye” and said “Mama.” He told us he was “going home in Daddy’s car.” He knew and he told us in his way — as if he were 100, yet he was 1. We had more time with him, yet those were certainly his last moments of clarity that I will never forget. And mainly because we have this soulful lion painting from Bren, who not only witnessed those last two days, but turned this experience into a physical representation, a work of art that’s worth more than a thousand words. More words than I could write.

I believe there are no coincidences in life. People bring us gifts that we never could imagine, yet change our lives. For us, it’s this gift of knowing that the love beyond our lion painting is eternal. Since I’ll never have enough words to express it — thank you, Bren, for your painting worth more than a thousand words.

To purchase your print of “Luka The Lion” by Bren Sparling, visit this link.

Bren is so graciously donating 100 percent of proceeds from the purchase of these prints to the Luka The Lion Foundation, which we started to honor Luka’s spirit to raise awareness for rare diseases and help patients and their families so they never feel alone. The beauty lives on through this gorgeous watercolor.

Follow this journey on the Luka The Lion Foundation website, on Twitter and Facebook.

Originally published: March 13, 2016
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