1st Vacation

We just returned from our 1st family vacation after diagnosis. We have been going to Cape Cod for the past several years with my family. We were so looking forward to getting away for a little bit and spending time together away from reality. On the outside it looked like the perfect vacation. We rented a house with my parents, brother, sister and her family. It was less than a 5 minute walk to the beach. We could even see the ocean from the roof top deck. The weather was perfect every day. It was exactly what I was hoping it would be. Until we got there. I struggled all week with an emotional roller coaster of emotions. At the same moment I was feeling so happy and grateful that Mac was with us and feeling good I was so incredibly sad to see him sit out swimming at the beach and playing with his cousins. He had always been the 1st one to run into the ocean and the last one dragged out at the end of the day. He had been planning on catching a seagull for a few years setting up traps and waiting patiently for them. He had no interest this year. It was so painfully obvious that Mac is not and will never again be that carefree kid he once was. I am grateful for every moment we have with Mac, but am devastated over the loss of childhood he deserved. He should not have to go to bed every night hooked up to a pump be get nutrition because his appetite is gone and taste buds are destroyed from radiation and chemo. He should not have to worry about getting sand in his g-tube. He should not be so cold on the beach he wraps up in 2 towels because he has lost so much weight.

Please don't misunderstand. We had an amazing week and really great time. Its just that it seems like every time I think I have a handle on the fact that our life will never be the same I feel like I am slapped in the face with another example of just how much has changed. I think right now I am ok with the conflicting feeling of gratitude, happiness and overwhelming sadness at times. It is a lot better than feeling angry. I imagine these emotions have become my "new normal" and hopefully as time goes by and we get through our "firsts" after diagnosis we will settle into our new lives. I just never expected the happy times to be so hard too.

"Childhood Cancer steals. It steals so much of our past, present, and future. It steals our past because it taints the memories we have of our children--leaving us with the "we should have knowns" or the "if onlies." It steals our present because childhood cancer and its treatment are so monopolizing, ... consuming so much of our time... and energy. It steals our future because 

when our children survive, we are never the same and forever faced with the real possibility that it could return. When they don't survive, we're also forever changed and robbed of the future with them all together."