Friday, August 6, 2010

Good evening.

For those of you who have children, have you thought of what it must be like for those mothers and fathers out there who have a child suffering with a critical illness? To have a child who stares death in the face every day?!? I can't help but feel abandoned by people who I would have never guessed would ever let me; or my child; down, and I am so angry and frustrated about it. So I want you to ask yourself, what if this were you? What if you had to hear the words, "your child has cancer?" It's been almost 3 years, where were you 3 years ago? Now imagine the time since then being filled with doctors and surgery and hospitals and poison and pain and anxiety and travel and financial devastation and lots more surgery. Now imagine your friends and family almost completely vanishing from your everyday life. Think of what it would feel like to be avoided by the people you needed most. Imagine the stab of pain in your heart as you look at your other children and realize that the fight to save one child has taken you from your other children. Imagine the pain in your heart as you watch your other children watch the sick child; with pain in their eyes. Now imagine the fear that freezes you when you think about the worst happening, and wondering if you will be alone when it comes. I can't stand to hear the words, "If you need me I will be there." I didn't need you 'there' - I needed you HERE. I know I have said those words, and I didn't realize how empty they are. Those of you who say those words, and know how awful it is to hear them; shame on you the most!! You should know better.

I wish I had the option to turn my back, and wait for that update in my email or facebook, then say how much I care.... but in reality be so detached that I can choose to just forget about it until the next update. Maybe post something like "stay positive" or "keep praying" or "it will be ok" or "everything happens for a reason" and that makes me feel better, and it is ok for me to really not be involved at all. I get that from people who live 3000 miles away, from people who don't even know us (and that's ok from them), why would you think that is enough from close friends and family?? People who don't know us have shown us far more love, support, and concern than close friends and family. People who don't know us never once questioned whether or not we were 'faking' this (as if we would; how sick and twisted is that?); never kicked us when we were down; never betrayed us; never sent mean, nasty, selfish, vindictive letters; etc. They understand our need to vent, and they accept us for who we are. They understand that cancer is a FAMILY diagnosis, and they continue to read my posts. They didn't stop reading because THEY (their opinion) felt it was all about me. I have felt more love and acceptance from them than I have from close friends and family. They have reached out to us far more than close friends and family have. Some of the nurses, technicians, and doctors at the hospital reached out to us more, and showed more love and compassion, than close friends and family have. I find that very sad, and all too common. I have read about that happening several times, on other caring bridge sites. However, I also read on a caring bridge than one family was brought together by their child's cancer diagnosis. They said sisters (who hadn't spoken in years) put hard feelings and differences in the past and began talking to each other; the family rallied around and supported the parents (of the child with cancer) like never before. They said, "That is what happens when a child is diagnosed with cancer." Really? I only wish that were true. One of the biggest regrets I have in my life is telling my family that my son has cancer. I wish I would have just stuck to a committment I made to myself before he was diagnosed and just not told them. But I can't go back; though I wish I could. But I can go forward, and that is what I am doing. I will continue to post; the good, the bad, and the ugly. And I will contiue to tell about the whole familly, and how we ALL are doing.

If you don't like my post today, too bad. I am angry and frustrated, but more than that - I am done. Done pretending that its ok when its not. Done with people who don't care about me or my family.

This was one of those 'venting' posts. Thanks for listening. Do NOT post any criticism for what I have said~~~it WILL be deleted!


Childhood cancer is devastating and creates unique pressures on the WHOLE family.