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My Inspiration: Rowan Windham

By Yahan Xie - Rowan was born with a condition called Shwachman-Diamond’s Syndrome and it affects many parts of the body including the bone marrow, skeletal system...

By Yahan Xie

Rowan was born with a condition called Shwachman-Diamond’s Syndrome and it affects many parts of the body including the bone marrow, skeletal system, pancreas, and numerous others that I’m forgetting about right now. He went through so much in such a short amount of time.

He spent a third of his life in the hospital and also underwent almost 100 surgeries. Even with everything that he went through, he still loved every day of his life. “I love my life!” were the last words he said before he was intubated for the last time. Not a day went by that he didn’t say “I love my life!”, and he truly meant it. He was my rock on many of my darkest days. I still remember how whenever I hit a new low, I thought, “If Rowan will be ok, then I’ll be ok.” I always wore my “Rally for Rowan” shirts on hard days as a reminder to keep going even when life’s hard. I still do that sometimes. I wore it once underneath another shirt when I ran a tough mudder at camp one summer since I didn’t want to get it dirty, but I still wanted to bring Rowan along to keep me going since I didn’t want to do it. It turned out to be an amazing experience and I’m so glad that I did it. 

There are so many things that I love about Rowan. I remember being immediately drawn to his story after reading about the amazing bond he had with Jalene, one of his young friends that he met while in the hospital. Throughout the 20 months that I’ve known his story, I’ve learned that we also have several things in common. We both shared a deep passion for our faith and we both loved art, cooking, and theatre. I was thrilled to find out that we had been in some of the same shows before, along with the fact that he’s been in some shows that I’ve always dreamed of being cast in, such as Shrek Jr. I also found out later that he always wanted to learn the violin, an instrument I’ve played for 6 years. Ever since I came to know Rowan’s story, I always dreamed about making it down to Texas someday to meet him in person to talk about all of the stuff that we had in common, to teach him violin, and to thank him for all that God has done through him. It still hurts knowing that that chance will never come. I still have goals of making it down to Texas one day, I just have a different itinerary this time around.

Rowan’s amazing faith deeply inspired me. I remember when he was just about to leave for Seattle around this time last year. He and his mom were talking about what was going to happen in the coming months. He said, “I’m 100% sure that I want to get the transplant. Even if there was only a 50/50 chance it would work, there’s a 100% chance it won’t work…if I don’t take the chance. And with God, I feel like it’s a 100% chance I will make it through this. I’d rather take the chance of it working, and the risk of it not working…even if there’s a chance of death…because I trust my life with God.” He also said, “I’ll be ok either way” to refer to how he knew he’d be ok even if he did go to Heaven because of how amazing a place it is. Copying that dialogue over now still makes me lose my breath at how amazing his words are. He truly was wise beyond his years. 

Another thing that I loved about Rowan was his selflessness. He never only focused on himself. Someone else who also loved him recently posted to Facebook about a dream that she had. In the dream, Rowan kept having to move hospital rooms to make room for other patients. But he didn’t mind. He was more concerned about the person who needed the room than he was with himself. The dream has been hard for me to forget. There is no doubt that that’s something he would have actually done if he ever found himself in that situation. When he was younger, an organization called Kidd’s Kids had arranged a trip to Disney World for him and his family. Like any kid, Rowan really enjoyed the trip. But unlike most kids, the question he had asked his mom when the trip ended wasn’t, “When can we go again?”. Instead, he was more concerned about the question, “What can I do so more kids can go next year?”.

Plans for a lemonade stand came together relatively quickly. Rowan’s fundraiser soon became an annual thing which quickly expanded. Overall, he raised nearly $15,000 for Kidd’s Kids. He also greatly cared for his friends and their families. He was very close with two of his friend’s mommas, Jalene and Adrian moms, and I’m sure that there were many others as well. Around this time last year, he was working on a memorial garden to honor Jalene. I still remember following the progress on it through his mom’s blog. I could tell that he had put a lot of time, effort, and love into the project. It came out to be really amazing. 

I remember when school first started, I wanted to send Rowan something as he was going through his first transplant, so I asked his mom what his favorite colors were and I made him a kusudama. His mom sent me a picture after it arrived, and it also made a few appearances in pictures that have been shared to his mom’s blog which is sweet. Because I was shipping a whole pack of play-doh along with the kusudama, it turned out to be a relatively heavy package, which meant it cost more than I expected to ship. I remember walking out of the post office at my school realizing that I wasn’t so concerned about the shipping price like I usually am when stuff costs more than I expected. I then realized that it didn’t remotely matter to me at that moment. I just wanted Rowan to feel loved and like he could still be a kid despite everything that he was going through.

Unfortunately, because of what Rowan means to me, that has made having to let him go very difficult. I know what grief is like. It has crept into my life on many occasions after I’ve had to outlive so many of my biggest inspirations. Yet having to live with a Rowan-sized hole in my heart is hands-down the hardest thing that I’ve had to ever walk through. The pain has lessened with time, but it hasn’t disappeared completely. 

So to wrap up, I guess, I’m sure you can tell what an amazing boy Rowan is and always will be. And I hope that you’ll be able to understand why he means so much to me. 

You can visit Rowan’s mom’s blog here.

You can also visit Yahan’s tribute Instagram account here.

Images: Photos of Rowan have been provided by his family. Main image by Joshua Earle on Unsplash

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