Tonight's picture was taken in January of 2009. Mattie was in NYC, starting an experimental treatment at Memorial Sloan Kettering. Everything about Memorial was difficult. The majority of infusions and procedures are done on an outpatient basis for children. Their playroom looked more like a warehouse than a room conducive to engage children with life threatening issues. In any case, Mattie's first infusion of this immunotherapy drug was admitted in a hallway. You got that right, I said a hallway. With lots of others walking passed us, exposed to every germ possible. I was stunned, but that is business as usual for Memorial. Soon after the infusion, Mattie started to feel ill. So we literally were placed in this two by four of a cubicle that you see in the photo. However, shortly there after we were sent back to the hotel, to have a wild ride of a night. A night, in which we had to come back to Memorial's ER to get something to counter act the terrible reaction Mattie had the drug. NYC does not bring back positive memories for us, nor does the hospital.
Quote of the day: When people talk, listen completely. Most people never listen. ~ Ernest Hemingway
I think Ernest Hemingway was exactly right! People do a lot of talking, and talking at one another. Yet the key component being missed is listening. For the past several weeks, I have been communicating with a friend of mine who lives out of state. She and I have known one another for years. Despite geographical distance separating us, we try to stay connected. Thankfully electronic means make that much easier now.
Since this is her story and not mine. I am not going into details about what we are talking about. Other than she has a concern about her daughter. Though the concern is very different from childhood cancer, I can absolutely understand how she is feeling and the level of frustration and helplessness she is facing. There are many things that we as parents can't control in life. We want to make things go as smoothly as possible for our children... to do well in school, to have friends, to be invited to activities, and to contribute positively to the community. Yet some things like illness are out of our control. Yet when going through a health crisis, you can literally see your friends and family do one of two things..... come closer together or run the other way. After all, it isn't easy to understand something different like cancer or any other illness for that matter. Sometimes it is easier not to listen and create distance.
This not listening doesn't just apply to friends and family. It can also apply to the professionals you are seeking help from. Many times doctors are busy managing too large of a case load, have competing priorities, and frankly some of them have forgotten why they entered the helping profession to begin with. So what do you do with these unhelpful professionals? It's a quandary that can leave parents feeling like they are drowning in quick sand. I guess what intrigues me is how is it that through electronic means I can understand what my friend and her daughter are dealing with, and yet the people who interface with them are oblivious to the seriousness of the matter?! Really I have NO ANSWERS!
One of my strongest skills is assessing a situation of a health care nature and then matching up the community resources to help. Though my friend did not ask for help, I inserted myself from afar. My friend keeps telling me I get it. I get it because I raised Mattie. I always say he was my best teacher, but it is true. I knew at an early age that Mattie needed speech and occupational therapy intervention. It is hard to admit that as a parent I could not manage the issues on my own, but once I had the resources and learned skills to work with Mattie, I saw him turning a corner. So much so that by the time he entered kindergarten, no one would have ever known he had sensory integration issues. We managed that hurdle, but that was nothing in comparison to childhood cancer. That was the ultimate test that did not end positively. The skills, insights, and understanding I developed during those 14 months are hard to describe. Yet I would like to think that from Mattie's cancer journey, I am able to now help others in ways that wouldn't be possible without first hand exposure.
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