My heart gets a little heavy this time of year. I start to wonder why and then realize that it means another year has passed since I last saw you. Last held your hand. Last hugged you.
You fought Ewing’s Sarcoma with such poise, grace and unwavering faith in the Lord that I could only stand in awe.
I didn’t meet you and your family until after your first battle with Ewing’s. I actually remember exactly where we met and how we immediately hit it off. I remember we laughed and laughed.
From there our friendship just grew. You visited the Rally office, filmed videos and spoke at Rally events. There were Subway and Chick-fil-A lunches. There were also relapses, hospital visits and doctor’s appointments that you invited me to.
There are so many Presh memories. Indulge me as I recall a few.
You found it so funny that any medical procedure, while it fascinated you, completely made me weak in the knees. You came to understand why I would say I had to leave when a nurse or doctor came in the room. You’d giggle and give me a quick hug. You were so sensitive and loving in spite of my squeamishness. I was grateful.
There was the time that you, your mom, Catherine and I were in the dressing room at Bloomingdale’s to pick out your Rally On the Runway outfit. The total confusion on your face as the sales lady was gushing over you makes me laugh to this day. I will always cherish that memory for multiple reasons, but most of all because it’s when you got your nickname—Presh!
I miss your long, tight hugs. The longer we held on, the harder it was to let go. Oh, I miss those hugs! I miss our talks about life, your dreams, your hopes, our shared faith and your sincere desire to advocate on a national level for childhood cancer research. But mostly, I miss those hugs. Even though a word wasn’t uttered while we were hugging, volumes were spoken.
I remember where I was sitting when your mom called to tell me that a routine check-up revealed a spot on your lung—no symptoms, no warnings. I can still feel the pit in my stomach and fresh tears in my eyes every time I think about it. Even as I type those words, I am still in disbelief of that call.
I remember being on the beach with girlfriends when you had your lung surgery and getting updates from your mom. I was so thankful the surgery was a success. You made it through that relapse.
I remember going to appointment with you and your family months later—maybe even years—and we were all concerned you had relapsed. I can’t really remember why, but I guess they saw something on another routine x-ray. Maybe there was a biopsy, too. The doctor walked in, and everyone was nervously talking, willing away any bad news. In the midst of the anxious chatter, the doctor looked at you and quietly said, “You are fine. It was nothing.” You smiled. A few minutes later, he told everyone. It’s a sweet memory.
Months later, the call came that your disease was back. You were about to graduate from high school, and you were told there were no treatment options left for you. We searched the world over—literally—to discover something, anything, that would keep the cancer at bay.
You tried a few things, but nothing really worked. I think you went through some palliative chemotherapy and you did really well—for a while. Every time I saw you, Presh, it was precious time.
In your honor, we instituted an award that is given at Rally On the Runway with a copy of your infamous butterfly painting. Of course, I wanted to call it the Sarah Barr Award, but you suggested we call it the Butterfly Award. Every year it is an honor to give that award to someone committed to our shared mission: funding childhood cancer research so there are better treatments with fewer long-term side effects and, ultimately, a cure.
We had a lot in common, Presh. One was our love of lambs; unbeknownst to each other, we had both named our lambs Presh. We both loved the beach, too. You wanted to go on one more beach trip. Since time was closing in, our dear friends in Pensacola quickly made it happen.
I think it was less than a week later that I got a text from your mom. You were in the hospital, and you would soon be going home to heaven. She said you wanted to see me.
I will never forget that moment. Never. I walked in your room and you were on a BiPAP machine—your entire face was covered with a big mask helping you breathe. You couldn’t talk but you could smile, and smile you did. Your mom was laying in the bed with you, soaking up every Sarah moment she could. I felt like I was watching something sacred.
What happened next is probably one of the most selfless gestures I have ever encountered in my life. Your Mom got up and asked me to lay down with you. As we laid there together, holding hands with our fingers intertwined, we cried. Of course, we also laughed. You actually laughed so hard you snorted, even with the BiPAP machine on!
As I was getting up, you lifted your hand to mine and did the Hawaiian symbol for I Love You. We pressed our I Love You fingers together—after I figured out what you were doing, which made us laugh all over again—and I walked out of the room, knowing I’d never see you again this side of heaven.
That was a Friday. You were the sweet, quiet, stronger-than-you-know type, and you made it through the weekend. On Monday, I reached out to your Mom and she asked me to bring lunch to the hospital. I was just about to drop it off when your Mom texted and said not to come. It was your time.
I took a deep breath, with tears streaming down my cheeks, and I looked outside. It was a beautiful day. The sky was a bright baby blue. The sun was shining. It was a perfect day for you to go to your new home in heaven. I imagined you giving Jesus the first of many long, tight Presh hugs. I knew in that moment that heaven got sweeter.
After you passed, your Mom and I met for lunch. She gave me one of your Willow Tree Angel in your honor and memory. I love it, of course. It sits on my desk and makes me smile every day, because it reminds me of you. The angel’s wings are a little loose, so they are a bit crooked and almost spin. Your mom said she started to fix the wings before giving me the figurine, but then she realized you and I would’ve laughed about them. And I do laugh about them!
See, Presh, you still bring me joy—even from heaven.
Big tight hug and love YOU,
Donate in memory of Sarah and all the kids who have bravely fought Ewing’s Sarcoma.