Tonight's picture was taken in September of 2002. Mattie was five months old and as you can see was now sitting in a high chair to eat. The month before, Mattie wanted nothing to do with the chair. A month later he tolerated the chair but preferred it without the table! It was a gradual process with Mattie, but as I learned it was important to do things on Mattie's time! It was what worked and as a parent I did what worked for Mattie, not what worked for me or some pediatric theory and timeline.
Quote of the day: The truest help we can render an afflicted man is not to take his burden from him, but to call out his best energy, that he may be able to bear the burden. ~ Phillips Brooks
But how did I meet Junko? Well Junko and I met the summer of 2007, right before Mattie was going to enter kindergarten. I decided to enroll Mattie in a part time summer camp that year at his new school, in order to help him adjust to kindergarten in the Fall. I figured if he was on the campus and interacting with some of the same teachers he would see in the Fall, it would help with the transition. Keep in mind Mattie LOVED his preschool and did not want to go to a new school.
Junko's son, Kazu, was enrolled in the same summer camp as Mattie, as like me, she wanted to help her son adjust to this new campus environment. On the first day of summer camp, I literally walked Mattie right into the building. Yes I was the over anxious and protective parent and wanted to know where he was going to be and who was going to be leading his camp session. Mattie was shy and really did not want me to leave and I would say the first day or so, camp was VERY difficult for him. However, by the third day, as I marched Mattie into the classroom, I looked around and assessed the other kids in the room. It was a camp geared for 5-7 year olds and there had to be at least 20-25 kids in the gym running around (even I found it overwhelming). Many of these kids knew one another already, so I could see Mattie was the odd kid out. However, I saw a kid standing alone and not interacting with anyone. So I went up to him. I asked him what his name was and whether he would like to play with Mattie. He told me his name was Kazu and wasn't sure what to do next, but Mattie moved along side Kazu, and I figured perhaps they would stay together. There is strength in pairs.
This camp was two weeks long. By the second week, while picking Mattie up, I had a mom chasing after me in the parking lot. Who was it? But Junko! She wanted to track me down because Kazu told her what I did in the classroom, and she was thrilled that her son was now paired up with Mattie. She said this made the summer camp experience for her son, and therefore for her. So literally our friendship started over Mattie! Mattie connected me with many wonderful people.
When Mattie was diagnosed with cancer, Junko came at least once a month to visit us in the hospital. Unlike all our other visitors, Junko came to truly meet my ever growing needs. Naturally she brought food and toys for Mattie, but she coordinated it with child life so that we could have the lunch she brought for both of us in the family lounge and then she would give me a neck and back massage. Mean while, I knew Mattie was well taken care of while I was with Junko, since he loved Linda, his child life specialist. These many acts of kindness will never be forgotten, and to this day, Junko volunteers her time for the Foundation.
Junko is a wonderful example of the amazing support community that we had while Mattie was battling cancer. Something that will never be forgotten. In fact, once Mattie died and this community dwindled, it was very hard to accept, adjust to, and come to turns with. The only thing I can equate this feeling to is being a pop star in Hollywood. For a moment in time you are on everyone's mind and in all conversations. Then as often happens, the fade dies down, and therefore so does that person's stardom and fame. In a way, this was what it felt like. When Mattie was battling cancer, everyone wanted to be a part of our lives and to help. Literally people tuned into the blog daily, with hundreds of visits per day. On surgery days, the visits were in the thousands. Whatever item we needed, we got five of them. It was truly incredible, to see people unite over Mattie. Yet after Mattie died, things began to change. There was no longer a little person to fight for to try to achieve a happy ending. All that was left was two broken parents, with a lifetime of grief ahead of them. Some people, even those closest to me (for 15+ years), abandoned ship. I live with both the beauty and the horror associated with childhood cancer, and as you can see I AM NOT TALKING ABOUT THE MEDICINE. I am reflecting on the social and emotional issues that have forever transformed my life.
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