GILDA'S HOUSE

I took M-E and Whitney to Gilda's House last night. They attended a focus group for teens to see if they could help set up a program for teens affected by cancer. Kids who have it, have friends with it, or parents and other loves ones.

They came with a ton of ideas. M-E was the only child with cancer. I suggested that she talk to some people at the hospital and get more kids involved. There is a distinct lack of group emotional support during this process. We have lots of support from the staff and some relationships develop from our contact with other parents but no one has the energy to organize anything at the hospital. Unfortunately this is a due to many unavoidable realities. Time and HIPA are the worst offenders.

There are lots of complications and road blocks to having time for something as simple as a group meeting. Having a child with cancer is a full time job. There are appointments, constant vigilance at home, there are extra trips to the hospital due to emergencies, there are meetings with doctors and extra reading, There is a need to spend endless hours reassuring your child it will be "okay" while knowing you might be lieing. The there is the need to attend to your job and simple things like laundry or taking out the garbage. There is the endless issues with payment of bills that never seem to go away and insurance companies and argument over need for certain costs to be covered. There are co-pays and extra co-pays for the one extra pill you gave her by accident or it fell on the floor. It is all very overwhelming. You get used to it after a while and weave it into your life but then so many other parts of your life simply disappear.

You feel desperately alone. Your friends and neighbors and loved ones try to understand but they don't know what to say or do and they begin to retreat when they no longer can count on you. You begin taking the phone off the hook or not returning phone calls. You cann't tell people what you need or even reach out and make a social call. You become more and more isolated because you can not do the things with them that you used to do. There is an outpouring of heartfelt support and then no recipocation or enough thank you notes or even return phone calls. As I sit here today I can think of so many ways I have not been a good friend to those that have helped us so much. We are all human and people need to know they are appreciated and need to have their souls nurtured. They become afraid to call, and they quit asking because there is so much disappointment in all the "No" we can't do that's or the" we have to wait and see". I have stopped planning anything in the future because I so hate to see M-E disappointed when she misses something. We would have loved to see the Lion King but then who could tell if her numbers would be up or is she would be feeling well enough to go ....... .


As humans we are planners, we need to have some certainty in our lives. M-E and I have no certainty and that is our certainty.

What is worse is running into people that have not seen or talked to you for awhile. They have that guilt stricken look on their faces. I see people at the school that intended to do something for us but for very valid and understandable reasons have not. There is not a requirement that to be a good friend they have to deliver a meal or send a card or haul stuff to good will or do some of the weird things my mother think up for people to do. What a waste of good intentions. I wish people would not feel bad. I am certaint that they have done lots of good deeds and we have been well cared for by everyone. It is sort of like the loaves and fishes story. The food was there when it was needed. The universe is in need of great kindness and it provides everything we need when we need it. We have been so blessed with help and our needs met every day that no one should ever feel they have not done something they thought they should have done. Nothing was ever "expected" and everthing was appreciated when it arrived.

Cancer parents simply don't have the time or ability to reach out of the small area that becomes our lives. Sometimes people take that as a rejection. What I have come to realize is that I have to live in this very precise moment. I can not commit to tomorrow or even next week in a meaningful way. Last night I could have called someone and had dinner with them while waiting for M-E. I did not know for sure that I could make it. I had every intention of going but what if M-E needed me to stay, or she was not able to go or the meeting was planned. I too hate to disappoint and impose. I have called several people at different times and they have not been able to do something at that particular time. They feel bad about it and get all worried and stressed. DON'T SWEAT THE SMALL STUFF .

This continues to be a long journey for all of us. Our old lives are quickly fading and have lost their rhythm. We are on a different path than before and excuse my trite statement, we will never be the same again. When we come out of this cave we will not be able to pick up where we were before because we will be in a different part of the universe. We will be able to incorporate many of the elements of our old lives into the new landscape but it will be different but it will be a great life.