June 17th

I realize that it has been some time since my last posting and that is only because some days seem to pass with the inability to do everything that seems should be possible. It is not that we are oblivious to the world around us, it is that we are unable to keep up with the world around us. Our focus is taking care of ourselves and trying to maintain energy to fight the fight. I often describe myself as a cartoon character the is 'moving but not going anywhere'. Nothing seems possible these days without the help that we have received from friends & family that have jumped in to do everything from cooking, cleaning, supervising the boys, and spending time with Robert and I to relieve us- to rest and try and catch our breath. We are grateful for the friends who will travel to visit. The friends & family who plan for experiences - for our family- to help us find fun in the days and to build memories to last a lifetime. The friends who organize and execute plans to hold fundraisers to help to find better treatments and a cure for brain cancer. Our awareness of the people who care for us is not lost and we are incredibly grateful to be cared for in ways that make us all appreciative of each other and the relationships that we have.
There are many positive factors involved in this most difficult set of circumstances. Robert will have completed two weeks of brain radiation after tomorrow and the side effects from treatment appear to be less severe then we had imagined. Robert has good days and bad days and it is difficult to determine what causes the bad days/moments. I am convinced that it is a combination of factors that impact his well- being. The harsh radiation, the multiple medications, and the effects of tumors? Robert is well under the circumstances and he is the most couragous person I know.
We are focusd on each day as it arrives and recognize the importance of grabbing onto the moments of simple pleasures, moments of connectedness, and moments of interaction. A smile, a laugh, a roll of the eyes, a kiss, a hug holding hand, and lying together communicate more then any words. We are grateful for opportunities.
The boys are remarkable and Robert and I are amazed by them everyday. They handle the changes with a courage that is hard to imagine is possible from children who are so young and developmentally (apparently) self-centered. I know that they are scared and we can not take that away. We talk often about what is happening and they accept it without frustration, anger, or resentment. They love - just to love. I am sad for what has changed, but we work to do the same things in a different way. They drive me to find the -new new normal- and we all benefit from it. We have much to learn from children.
Thanks!