Snippets

I'm going to need to start blogging in snippets because there's no way to collect all my thoughts and tell the whole story. Now that we are finished with chemo, the pressure is all around me to breathe a sigh of relief and return to normal. That's not exactly how it works. You know there are times that you just keep going and going - you run yourself ragged. There's no time to stop. No time to even think. You've essentially survived because you haven't had a chance to think about it or feel it all. It's all catching up to me. I'm overwhelmed at all the stuff we did these past several months.

I've had great difficulty this past month to reconcile my feelings. I joined a rhabdo-kids group filled with parents/grandparent/spouses/concerned friends of kids/teens/& some adults who have or have had rhabdomyosarcoma. With Jacob's diagnosis last July, we entered into another realm. I've been introduced and influenced by other parents that I would NEVER have met if it weren't for this dreaded disease. I've read their stories, heard the fear in their typed voices, & felt overwheming empathy, love, concern, & heartbreak for their children. Virtual strangers, but my friends. They have answered my questions and offered me amazing support.

Some of their children have become "rhabdo angels". Kids die. Each parent is horrified to even entertain the thought that it could be their son or daughter. I've spent time worrying that it could be mine. I'm grateful that right now, today, it's not. I've continued my attitude of living one day at a time. And hopefully we will all be VERY old before we have to start saying "goodbye for now." But I have been awakened to the fact that there are many parents walking around with a hole in their heart. Days will never be the same because their little one is in heaven and not in the family room.

Some may ask, "so why do you read their stories?" or "don't you just want to move on from all this and get back to a life that is more normal?" Some may advise, "you should stop thinking about the worst case scenario." My response is that I AM going to lean more in the direction that my life is taking me. We are going to embrace returning Jacob to 3rd grade and enjoy less frequent visits to the oncology office. I'm going to take my kids in public and let them sit in crowded places. I'll still make them use hand sanitizer & possibly even pack water bottles instead of drinking fountains. But I also feel an inner obligation to always remember that children get cancer. Parents have to walk their kids through the impossible. Thousands of kids are living life with a central line, with bald heads, with low blood counts, and with ridiculous treatment options.

I think it would be wrong for me to forget this terrifying experience. I need to be more caring, more understanding, more kind, and more charitable because I have been acquainted with cancer. Because I have met the most loving parents. Because I have seen the most amazing resilience in my own son and in the other cancer kids.

I'm not good at fund raising. I'm not good at making huge donations. But I'm going to do what little bit I can. And if I do a little and you do a little and we get our friends to do a little too, eventually childhood cancer will be able to get the awareness and funding that is needed.