This year, we will be launching a new program to better support our families. This program was inspired by our experience with a very special little girl named Lily and her family. This family welcomed me into their home and their lives during the most difficult time they will likely ever face. Lily’s mom felt I needed to be there to learn what cancer and end of life really looked like so I could better help FGP families in the future. I witnessed grief beyond any I ever imagined but with that grief I witnessed so much love for a child who was far too young and feisty to leave this earth, but because of cancer, she did. The experience has inspired our organization to do more for families as they face end of life and beyond. We are still in the planning stages and are working with other organizations to ensure there is no overlap of support, to compile resources for the families of what is available in our community and to meet the needs of a grieving family.

As an organization, we cannot change the outcome of the child’s cancer but we can change the experience surrounding these life changing events by listening to our families and their needs and providing them with the type of support they are wanting.

One thing that families always say is that they want people to know about their child even after they are gone. So, today, with Lily’s mom’s permission, I would like share with you the little girl I grew to know and love.

This is from the eulogy I read at her service in January:

I am Andie McConnell, a close family friend of the N family or as Lily once said over and over, her mom’s annoying friend. I have been given the honor of sharing with all of you about Lily. As you can imagine, it is a true gift and honor to be standing before you. Since Melanie and Eric were told that they would eventually be saying goodbye to their Lilybug, Melanie has been sorting through how to honor their girl. She had big plans for what the eulogy would say and we talked about it almost every time we were together. Melanie and Eric both thought there would be more time with Lily as many of us did. Melanie never found the time to write the eulogy because she was focused on loving her girl and making memories in her last months rather than writing about them. I am hopeful we will do Lily’s life justice today.

In order to be a support to our pediatric cancer families, I seldom get to know the children. I have always felt that I can’t support the parents in a situation like this if I am grieving but Lily has shown me that isn’t true. The day Lily stole my heart was after a couple of hours in the car of her ignoring me and refusing to speak to me. For those of you who know Lily well, you know that she often played hard to get. In a waiting room at Children’s National, I told her a story about her beloved Curious George and somehow that opened the door for me. We then told stories to each other passing George back and forth while we waited for her appointment. The rest of the day, we told stories that started with Once Upon a Time and ended with The End. Each story included a combination of characters including Eric, Melanie, Landon, Megan, and Curious George. When she finally added me to the story, I knew I would never be the same.

The stories she told often ended abruptly. She would suddenly say, “The End”. We would laugh and I would ask her many times, “Wait! Isn’t there more?” And she would shake her head, raise her eyebrows and say, “No”. I am certain many of you can picture her sweet little facial expression that she used regularly that let you know she would not be changing her mind.

When I look back on it, I realized her method of story telling is much like her life. Like her made up stories from that day, her life story is far too short and has left us all especially her family wishing for more and wondering what her story would have been had she not gotten pediatric cancer.

Every time I saw Lily after our story telling day, she wouldn’t let me tell her a story. She would raise her little eyebrows, shake her head and say no. I never stopped trying because there was something so special about Lily that made you want to engage with her. I was sitting with her last Friday and asked her if I could tell her a story. And much to my surprise and joy, she said yes. I sat beside her, rubbed her sweet little feet and told her this story: Once upon a time there was a girl named Princess Lily. Princess Lily was so very loved by her mommy, her daddy, her big brother Landon and so many others. She was smart, strong, funny and beautiful. The end.

Of course there was much more to Lily’s life so here is the expanded version:

Once upon a time there was a girl named Princess Lily. Princess Lily was so very loved by her mommy, her daddy, her big brother Landon and so many others. She was a wonderful combination of her parents. She had her dad’s looks and like Eric, you knew you were loved by her the moment she teased you. And Like Melanie, she was a loyal friend. She once decided she could no longer be friends with a child when she found out he was being unkind to her other friends. Princess Lily loved her big brother and doing what he was doing or convincing him to do what she wanted. Lily’s cancer did not define who she was for she was too feisty, and stubborn (just like her Mommy) to let it. Lily had something unique with every adult in her life, a joke, a certain way she teased, a refusal to give kisses, declaring them her favorite, trying to bop them in the nose, telling them no, no matter what the question. And of course, she was a true, true Daddy’s girl. She also had a way with other children. They adored her instantly and wanted to be her friend. Lily intrigued her peers with her sense of humor, spunk and determination.

It is hard not to imagine what Lily’s life would have been. It is certain she would have been an amazing athlete. She likely would have played softball and anything else with a ball. She would have had a first date, a first kiss, a first broken heart, and a best friend she revealed all her secrets to. Lily would have changed the world in one way or another because of her strength, her feistiness, her determination, and her intelligence. Without a doubt, she would have helped others. She would have been a doctor, a feisty defense attorney, or in the words of her grandma, “She would have been a boss because she loved telling people what to do and we all listened and did what she said.” She should have had the opportunity to be whatever she wanted to be but instead she only had 7 years and most of those years she was battling cancer. In her years she made a greater impact than many people make in 80, she showed people how to love, how to not give up, what strength really looks like, how to make people laugh, she brought her community together and she inspired others to make a difference. Lily leaves behind countless people who love her and can’t help but laugh when they tell a story about her. Whatever you do, don’t let Lily’s story end today. Go out and tell it. Talk about her, say her name, tell her parents a funny story about her, share her life with others, tell them about pediatric cancer & Lily. I would say don’t forget her, but truly there is no way we could. The End.