November 13, 2012

Thank you to all that have committed to sending gift cards to share with the families at the Hematology/Oncology Clinic at the Floating Hospital for Children. Please know you are not only bringing joy into the lives of children, but are also relieving a lot of stress that parents of sick children feel when money is so tight and the holidays are approaching.

Our family is doing great. Mac is back to feeling and acting like he was pre-cancer. Liam seems to be doing well also. We seem to have been going on as a “normal” family, well, as normal as any family that has a visiting nurse come on a Saturday to change out a g-tube or any other parent that  goes to their child’s school daily to pour formula down the g-tube so they don’t go all day without eating or drinking. These have all become part of our life. It’s funny how such unnatural things can become such a natural part of everyday life so quickly.

Halloween proved to be an incredibly emotional day for me. Halloween has always been Mac’s favorite holiday. The boys put on their costumes and we all headed out to trick or treat. We made it to a few homes on our street before Mac got tired. We put him in his wheelchair and pushed him from house to house. He walked on his own, well with his brother, up to each door for his candy. Candy that he was so thrilled to get even though we all knew he would never eat any of it. As I watched him and the sheer joy of childhood innocence on his face I could not help but think about his and our futures. What would next Halloween look like for our family? How much longer would he be able to celebrate all the things kids do that make them such special little people  without all the skepticism that we carry around as adults? After talking about my fears with some great friends and taking their words of wisdom I decided to live in today and try not think about the future and how different it is going to be for both my boys than anything I would have ever wanted for them and so different from what they deserve. I was really doing well and starting to feel more human.

I should have known better to think it would continue for more than a few days. My “new life“ slapped me back to reality today. I went to feed Mac his lunch to find him waiting in the office. As soon as he saw me the tears started. He had a terrible headache. In any other child a dose of Tylenol and nap would be all that was needed. But, our “new normal” life means taking a temp to make sure he can have Tylenol, putting him down for nap, then crying and worrying about what this new pain may be. It is probably nothing more than a 7 yr. old boy who was a little tired and needed a break from school. Of course for our 7 year boy it could mean so much more…

I can never thank anyone enough for all of the love and support. Please continue to keep us all in your prayers.