Thomas

We were there for Thomas’s blood transfusion. That’s when Dr. Wiedl asked to talk to me alone in the next room. She fumbled around for words for a few seconds, and then began to cry. She said, “Sylvia, you need to go home and be together. Get Tyler home from boot camp and call in your extended family. I couldn’t wrap my mind around her words. I said, “What are you telling me? For four years, we were told we were only buying Thomas time, but I truly believed he was going to be the 1 in 5 who would beat this. We got in the car and drove home that afternoon, just like we were leaving one of our “normal doctor appointments. I think about that day all the time. I wonder if maybe I should have prepared him better — if I should have said to him, “Thomas, this is happening…it’s close now. I think maybe he would have panicked and I didn’t want him to be scared. I was still waiting for a miracle in the 11th hour.

A couple of weeks before he passed, I could see that he wasn’t doing well. He’d lost so much weight. He wasn’t eating. He didn’t want to play his Xbox. He’d come in from clinic and just lie on the couch, right here on this corner. He was so quiet. One day, as he was lying there, he looked right at me and said, “Mom, I’m scared. I don’t want to die. Everything in me at that moment wanted to scream, but I made myself be calm. So I looked at him and said, “You know, Tom, everyone dies. How and when we die isn’t up to us. Some people die when they’re really old. Some people lose their lives in an accident. I don’t know why this is our road, but we have to keep looking for the happy things — even the littlest thing that brings us joy. We have to make ourselves go from one happy thing to another.

They told me that I was to tell him that it’s okay to let go, when the time comes. I needed to give him permission. But I couldn’t do it. I wouldn’t say those words to my son. I shouldn’t have to. I want him here with me. I was so scared, so angry. My mom finally stepped in and said, “Sylvia, you have to tell him. But I wouldn’t. I sang to him, held him and listened to his breathing. Finally, she walked over to him and said, “Tom, your mom and dad are going to be okay. We’ll all be okay. There were nine of us crowded in his tiny room — some of us lying on his bedroom floor, some curled up in his bed. We didn t move for a long time, even after he was gone.

We’ve all come into his room at different times; we’ve had our moments in here. Each of us are dealing with the grief in different ways. After losing a child, I’m sure there are some people who close the door to that room and can’t go in it for years. But Thomas always had his door open; it just doesn’t feel right to shut it, even now. It’s still his room, and it will always be his room. If we stay in this house for the rest of our lives and have grandchildren in this house, I’ll want them to see his room, too, and know who Thomas was. We’re still so proud of him.

For the four years that he fought cancer, he never let it define him. Sure, there were those days when he was sick and stayed in bed. As soon as he felt better, he’d pick right back up where he left off. Even his demeanor would completely shift once we left clinic. As soon as he got home, he’d go straight outside to meet up with his friends and ride his motorbike. If he was able to look beyond his circumstances and see only the positives, I think I don’t have any excuse. I think that people just don’t know what to say to me, sometimes. They feel badly, and they’re trying to help. I still work in Thomas’s school and his teachers and friends come up to me every day. As much as it hurts in the moment, I always come away feeling a sense of comfort, because he was so loved. I try to make it a little less awkward and tell people, “It’s okay. There aren’t any words. But I hope they know that it means so much to me that they tried.

(Note: These photos were part of a series that ran in September 2016 for Childhood Cancer Awareness Month. Photographer Kristin Seward spent many hours with the families and staff whom Connor’s Heroes has come to know as we work together to help these brave children.)