Several weeks ago I asked your mom how you were doing. She said, “Physically she’s a 2. Spiritually she is a 10.”
It is fitting that you went to Heaven on Palm Sunday. I was actually on a flight that day when suddenly I woke up from a nap, looked out my window, and saw the brightest white I have ever seen. I looked as far as I could see to the left and to the right and straight ahead. All I could see was a blinding white. Not a hint of another color.
The thought popped into my head, “Grace could be flying to Heaven right now.” When I landed, I would find out that is exactly what was happening.
I am so thankful that I got to know you and spend time with you. Working with you on the speech you gave at the 2017 Delta Double Play Benefit Bash was inspiring. You worked so hard on the delivery and you nailed it.
I have a few favorite memories from your speech that night. One is when you said, “I love to compete, and I love to win,” looking right at Brian McCann, who had just won the World Series. The two of you shared a knowing smile.
I also love the strength and grace you demonstrated when you took a deep breath, looked right at me and said, “This is where my story doesn’t wrap up in a pretty bow.” We both knew what was coming.
Then you shared the hard truth with the crowd. Your cancer was back, and your treatment turned from “curative” to “quality of life” — or, as you put it, “quality of the end of life” because you were going to die. You went on to share that you were going to die from a cancer whose treatment hadn’t changed in 30 years. 30 years!
Of course, I loved when you innocently shared that iPhone had just introduced the iPhone 10 and that 14 iPhones had been developed in 10 years, yet the cancer treatment you were receiving was the same as it was 30 years ago. You then challenged everyone in the room: “Don’t believe me? Look it up on your iPhone.”
It was a powerful moment that spoke volumes about how ridiculous it is that as Americans, we can develop 14 new smart phones, yet we aren’t smart enough to develop new treatments for the disease that took your life at only 14 years old.
But we are smart enough. I believe that we can discover how to defeat osteosarcoma and other cancers unique to kids and adolescents. We can find better treatments. It just takes money, and at the end of the day, childhood cancer isn’t a profitable business. So, the real question is not “Can we find better treatments?” but “Are we willing to invest in discovering them?”
Cancer is the #1 disease killer of kids ages 1-19, yet less than 4% of the National Institutes of Health’s budget goes to fund cancer research for kids. Right now, there is an outcry in the country about gun control. Childhood cancer kills seven kids every day. I wish there was as strong a public outcry to defeat that killer. Your killer.
I am so sad and so angry that I have to go to your celebration of life. I don’t want to go because your life shouldn’t be over. It should just be beginning. I want to be going to see you swim in the Paralympics, teaching you to drive my little car, and so many other “normal” things. Going to your funeral is not normal. You were only 14 years old — 14 years old with so much life to live, so much more to experience, so much more to give and so many races left to win.
Another one of my favorite parts of your speech was when you told everyone not to feel sorry for you. You shared that you believed every single word that Rally Kid Gage has just sung, “How He Loves Us.” You told us that you had learned over the past three years that courage is NOT eliminating fear — courage IS not letting fear eliminate HOPE!
You could have heard a pin drop, Grace. Seriously, girl, you do love to compete, and you do love to win. You won everyone over that night, including Ed Bastian, the CEO of Delta Air Lines.
We had lunch in Mr. Ed’s office a few weeks later. That was a fun day, too. We sat around Ed’s office table, eating and sharing stories. You shared about making the Paralympic team and about how you had just swum with the pigs in the Bahamas. Ed shared that he was going to run the New York City Marathon and raise $1 million for Rally, and that you were his inspiration. There were a few tears shed.
On the way to lunch, I had asked what you would say if Ed wanted to know if he could do something for you. I was thinking you might want to travel somewhere. But instead, you looked at me without hesitation and said, “Fund osteosarcoma research.”
Then you added, “But I don’t want to be selfish. I know other childhood cancers need to be researched, too.” Amazing Grace.
Delta invited Paralympic gold medalist Mallory Weggemann to lunch that day. It was fun to watch you getting to know each other. You shared a common good friend, another Paralympian, McClain Hermes. After lunch we went to the pool and you and Mallory swam together. You were so excited and so was Mallory. It was magical to watch the two of you together.
That day you brought your A game, as you did every single day. That day you inspired Ed to run a marathon. You inspired Mallory, who had been battling injuries and recovering from surgeries, to get in the pool for the first time in year. And you inspired so much more. I know you will be watching from Heaven as it all unfolds.
Amazing Grace, you taught me so much by how you lived and how you faced the future. I am forever grateful for your friendship, honesty, grace, laughter and desire to win.
I am so very sorry, Grace, that you had cancer. I am sorry that your story didn’t wrap up in a pretty bow. I am sorry that cancer took your leg and eventually your life.
I will keep my promises to you, sweet girl. You kept the faith and you finished the race. I know you heard the words from the Lord, “Well done, good and faithful servant.” I am confident you are swimming all over Heaven. And I am confident that you are now physically a 10, too!
You won, Grace. You competed, and you won.
Read Grace’s speech and hear her tell her childhood cancer story in her own words here.