*Disclaimer:For those of you who responded to kindly to my initial article “Miracle on 34th Street’ chronicling Weston Keeton’s transplant surgery in December 2013, thank you from the bottom of my heart. The article opened many people to the topic of organ donation.
How did a 31 year-old Tennessee woman, who is mother of seven children — one critically ill –become best friends with a single, 24 year-old from Philadelphia? Two years later, I’m still trying to sort that out myself. I honestly believe fate introduced me to Julie. We were two people going their own personal battles, and trying to find some normalcy in life.
While working as a multimedia liaison at an organ procurement center, in spring 2012, I filmed a lot of sad stories. People sat down in front of my camera and shared their struggles during their wait for an organ transplant. My heart broke for many of these families, but when it came time to film the saddest story of them all, I ended the interview laughing.
Julie Keeton was far from home in Philadelphia, with her infant daughter and her seven-year-old son, while her five-year-old-son, Weston, was in-patient at Children’s Hospital of Philadelphia waiting for a heart and double lung transplant. Her other four children, all under the age of five, were back home in rural Tennessee with her husband. During our initial conversation, we learned that we had more in common than just our connection to organ donation. We both loved trying new restaurants, reading TMZ religiously and had a mutual love of scarves. She invited me to the hospital to meet Weston, who would not leave the hospital until his life saving transplant.
Over the next year and a half, our friendship continued to grow. I began visiting Weston and the family, quickly falling in love with their brave little joker who had an obsession with Flaming Hot Cheetos. I switched jobs, but our friendship continued to grow. During my visits Julie and I would talk about everything. I’d tell her about my unsuccessful ventures in online dating, and my latest work projects while she plotted ways to find me a boyfriend, and ways she could help get the word out about organ donation. Most of Julie’s energy was devoted to making sure Weston was living at the highest quality of life possible as he battled pulmonary hypertension. That meant planning art projects, whipping up special concoctions to get him to eat, holding his IV wires as he rode his tricycle down the hallway, and always fighting for the best treatment for him. Many times this meant that she slept on a cot as she stroked his head, disagreeing with doctors twice her age, and having conversations a mother should never have about her baby.
Despite being in the middle of this upheaval in her life, she was always there for me. After a crappy day, we would go to dinner and we would talk about our problems over appetizers and pumpkin beer. Even though she already had seven kids of her own, she took me under wing like the big sister I never had. She made sure to save left overs in Tupperware containers, taught me how to make homemade soup, and made sure I took care of myself when she could tell I was over worked.
As an only child, I grew up in a quiet household alone most of the time. Being in a home, where there would sometimes be six children running around laughing was a beautiful culture shock. As a friend to Julie, all I could offer was a listening ear and unlimited cuddles to her children. There were some times when all I could say was ‘I’m sorry, this sucks’. I reminded her that this was not going to be forever, and that her family would be together again. Although it was the darkest hour for the Keeton family, they brought me into their fold and for the first time in a very long time, I felt that I was part of a real family.
In December 2013, Weston finally got his call for transplant after waiting for nearly three years. With her husband on his way from Tennessee, I sat with her in the early morning hours as surgeons went over worst case scenarios and as we waited for her son’s new heart and lungs to arrive at the hospital. Even as we went down to the cafeteria after Weston was wheeled to the operating room, she still made sure I ate breakfast and not just coffee.
During the following months, Weston continued to struggle. Through every medical crisis, Julie continued to be the strongest advocate for Weston, making sure that he was as comfortable and happy as possible. All she wanted was to have her family back together in Tennessee. As a friend, I wanted to do anything possible to make that happen even though my stomach churned every time I thought about them returning home. But that wasn’t going to be until late summer 2014, or so we thought. But life doesn’t go as planned.
Three months after transplant, and seven years into fighting pulmonary hypertension, Weston Keeton died on March 23, 2014. Weston had such a passion for life, which gave him the strength to fight for his life as long as he did. He was able to find joy in every day, with his squeaky little voice bringing smiles to anyone who met him.
Julie’s love and devotion to her son allowed him to thrive in the rarest of circumstances, and set a precedence of how Weston lived his life: make every day the best day ever. The gift of organ donation gave the Keeton family three extra months together, including another Christmas holiday. The miracle of organ donation is still something held close to my heart — because it was the true gift of time. Even if it was only three months, it was three months that the family will have forever.
After receiving a text message saying ‘Weston has gone to heaven’ life began to change rapidly for the both of us. When I reached Weston’s room that day, it was drastically different. Instead of cartoons playing on the television, and beeping of machines there was silence.
Julie never looked so beautiful as she did that day, she held her little boy she fought so hard for over the past few years. Instead of being isolated in her own grief with her husband, Julie welcomed a steady stream of mourners from the hospital who had also fallen in love with the Keeton family during Weston’s stay. She gave hugs, dried tears and thanked doctors and nurses for their care. Her inner beauty showed through her compassion and gentleness of others grieving alongside her family.
I had never lost a family member that was close to me except my grandfather, but even then, I had not seen him in seven years prior and didn’t attend the funeral. I had never seen a dead body up close, or out of a funeral setting. With Weston experiencing several major medical crises in the time I’ve known him, I had thought I prepared myself in case the worst scenario ever happened. Having worked in the field of organ donation, I knew that serious risks were associated with recovery but for some reason I really thought a miracle would see him through. Nothing could have prepared me for his passing, or the heartache that I felt for Julie.
Suddenly, I was experiencing a series of firsts: my first loss of a person close to me, the first time I knew a child that had past, the first time I stood by a best friend losing a child and the first time planning a memorial service.
You simply cannot Google ‘what do you do when your best friend’s son dies suddenly after a chronic illness’. This situation is way past the quick fixes of a shot of tequila or a large piece of chocolate cake that people of my generation use to get by.
After saying my final goodbyes Weston, it was time to leave. Closing the door and leaving Julie and her husband alone with their child one last time, reality hit me in my gut. I sat down and sobbed uncontrollably, the kind that come from your soul. As my body shook, the grief hit me that not only would I never see Weston again, but that my friend and surrogate family would be returning home to Tennessee sooner than anyone expected. I put my hands over my mouth to try to make the sobs stop but they were too strong, fueled by the pain of loss. My tears were for the loss of the sense of family that I had found in the unlikeliest place.
Again, there isn’t handbook or app to help you plan your best friend’s son’s memorial service. The 72 hours before his memorial service seemed like a bad dream, as we all scrambled to gather photos, create program and make the appropriate plans. In the middle of making the arrangements, Julie’s apartment, was in the middle of being packed into boxes, since they planned to return to Tennessee after the Philadelphia services.
Weston’s two day memorial service in Philadelphia wasn’t somber. Instead it was focused on laughter, positivity and memories.
During the memorial service, I took a moment to look at the beautiful alter set up and relished in the quietness. A little hand tapped my leg, which belonged to Weston’s four-year-old brother, Sutton.
“Is Weston really in there?” he asked quietly, pointed to the clock, which housed his brother’s remains.
“He is in there, but his spirit is in heaven,” I said trying to make sure my answers were gentle. Sutton was quiet for a minute then continued, “Can he eat anything he wants in heaven? Does he need to ask permission?” “No Sutton, he can eat whatever he wants when he wants.” “Well what about a bedtime?” he continued. I shook my head. His eyes widen, “but if he stays up too late his eyes are going to get red.”
These are conversations that children shouldn’t be grappling with, but yet again, these children have the strength that their mother demonstrated during Weston’s entire health battle and life celebration. If this situation was hard enough for me make sense of at 24 years old, how could a child full of innocence comprehend Weston’s passing?
And almost as sudden as this situation started, it ended. Six days after Weston’s passing, Julie’s temporary apartment — that had been her make-shift home for the past 18 months — was packed up and her family was en route back to Tennessee. En route to a home she hadn’t been to in three years, leaving a city she called home for so long. I was left with the sudden loss of our best friend, who had lived just minutes away. A slew of adjustments were forced on us, and I would be lying to say there weren’t growing pains all around.
With Weston being an angel for almost two months now, we are all trying to adjust to a new normal. Instead of spending most of her time in a hospital room, Julie is back in her hometown, reunited with her other children yet trying to settle into a new routine while grieving. I’m attempting to try new activities, to help me meet new people. It still doesn’t take the place of trying out a new brunch spot with my best friend or spending a Saturday at the park with kids after getting ice cream.
Weston brought people from different backgrounds together, and changed their lives for the better by exposing them to a situation that they would have never experienced otherwise. The ability to witness the true meaning of family, commitment and friendship-which Julie and her family demonstrated to everyone who crossed their path — that was the real Miracle on 34th Street. Because of Weston, I learned what unconditional love, the strength a family can demonstrate, and that even if a situation doesn’t have a happy ending, that doesn’t mean we should wish the story ever happened.
To learn more about Weston and how his family honoring his legacy, click here.
To register as an organ donor, click here.
To read the initial “Miracle on 34th Street’ article, click here.