I met an adorable 12 year old boy in 2000. His name was Jonathan, but he said everyone called him Jay. After he introduced himself, he began to tell me about Cystic Fibrosis. He showed me the area where his port was.
Jay was a brilliant and bubbly child. His smile and laugh were contagious.
Unlike many 12 year olds, he knew about death and he knew his life would probably be short. That didn't slow Jay down though. He used every moment of his life touching lives, smiling, laughing, singing, drawing, and playing ball. He loved cars and music.
He use to tease me because I couldn't eat all the spicy Cajun food he liked. He scared me a few times because he would climb on a roof or something. He was best at making me smile, even when I was sad.
He was wise beyond his years and would sit and talk about others' dreams and goals. He would help anyone. He was a very generous and compassionate person.
Regardless of how sick he would get at times, he would joke around with all of us. His sister and I would call him on his birthday when he was in the hospital and he would tease us.
I will never forget the time I went to keep him company in the hospital. I was working a lot of hours and hadn't slept. When he said lay next to him on the bed to watch a video I did. I dozed off. When I woke up I realized he had covered me up and had ordered a snack for me. He was always putting others first. He was an amazing person.
As the years passed many of his friends passed away. He never gave up hope that a cure would arrive. He was realistic and knew it might not come in time and he ask everyone to remember to spread awareness if he should leave all of us before he could be cured.
Many times Jay would help a nurse with the IVs and Ports. He knew all about his condition and was a good teacher. He also was a committed advocate for sharing awareness about Cystic Fibrosis (CF).
I spent a lot of time with him for many years. He was an inspiration to all who knew him. I'm not sure if he even knew what "can't" meant. I know the word didn't apply to him or his enjoyment of life and people. He loved sports, but there were many times teachers and coaches didn't think he should play because he was small and because of the Cystic Fibrosis. Jay didn't agree with them and played.
I moved back to New Mexico. He had grown up and graduated from high school. We both had busy lives, but he visited because he and my son were close friends. My grandchildren loved having uncle Jay around. The last few conversations we had, he was excited because he had met his soulmate.
It broke my heart when I received the call saying he was gone. He left behind his fianace, parents, a sister, a brother and three beautiful nieces as well as grandparents, family and friends. Although he has gone home before us, he will never be forgotten.
Memories of the funeral still bring tears to my eyes. He has so many people who love him, especially his family. It is something he never wanted any of them to go through. He knew it could happen any time, but he had hoped. He hoped for all the families who deal with Cystic Fibrosis.
In 2000 when I first started using the internet he taught me how to do a lot of things. In 2006 he helped me learn to network to spread awareness and unite with other advocates because it had been a dream of mine for a long time. He ask me to promise to remember to spread awareness about Cystic Fibrosis when I got to the point of posting blogs. This one is for Jay. He created so many wonderful memories for all who love him.
