Musing

I don't know why I am meloncoly tonight so I apoligize now. I was reflecting on what it is like to be a parent with a child with a brain tumor and this is my thoughts.

One day when the world is right and you feel secure someone tells you your child has a brain tumor. Except they don't say tumor, to make the blow easier they use the word "mass" thinking that makes it easier to hear. Then they try to tell you its not cancer (but in your heart you know it is) and they argue about when to take it out. You are screaming to get the evil thing out of your child but you are powerless and wait. Eventually they concede that it must be cancer and do the surgery. 6 to 8 hours later you are relieved that he is alive and can breath without a machine. You are grateful for the the tears and pain he is in because it is proof you have not lost him yet. When you finally relax and his pain seems to be easing a stranger comes in and starts using words you have never heard. They tell you its cancer and a type you have never heard of. Before this sinks in you are given a "schedule" for treatment. There are no options offered, no more words of comfort. You sign forms and pray it will work. Every day becomes a struggle to survive. You close your heart, praying you can keep everybody you love inside and not lose anyone. You let everything go and stop dreaming. You tell everyone you are fine but inside you are broken and it is not fixable. After many months of terrible terrible treatments during which you watch your child drift to the edge of life. You watch his spirit shrink and his will to fight barely hold on. You watch his dreams die and see him surpass you in maturity. (that sounds good but no child should grow up this way) Anyway, after what seems like forever you are done with the treatment. But what does that mean? Can he go back to "normal"? He thought he would if he did everthing you told him but it can't happen. He will never be who he was before and nothing you do can fix it for him. Sadly you know that he will deteriorate over the next 18 months or so and once again you are powerless to do anything but wait for the bottom. The terrible joke of it all is that in the backround is still that evil cancer and it can reappear (and usually does) at anytime. At the end of everyday you are sooo very grateful that you had another one with your family. Grateful for the support you have. But you are left in the end still holding on and life goes on but is never the same. How do you move forward when you are not even sure you want to. Moving forward means letting this unfold completely and you certainly don't want that. So many nights without sleep, so many days without genuine fun, no more dreams. The fight now becomes to make that my reality not his. Or the other children. To give them another day of just being kids is all I want now. To hear them squabble and laugh, no thought to tomorrow. If I could only keep the world out forever......