It is Wednesday morning and and today I woke to the sweet sound of daaadddyyy in the distance. I rubbed my eyes and thought maybe I was dreaming but there it was again daaddddyy. I realized then that it was Liam and I knew why he was calling me. Liam was calling me to work as we had discussed when we called it quits the night before because it was time for bed. You see Liam and I have found a new joy together and it revolves around Bruder toy trucks. Bruder trucks are made in Germany and are the most realistic trucks and tractors you can mortgage your house for and yet they are very durable and made for a 3-4 year old. Each has actual moving parts that allow a child and his big buddy to truly act out real world work like trash collection (garbage truck lifts cans and compacts trash), construction site (crane actually works), farming (has a mower whose blades turn), and a cement truck (that rotates and actually dispenses sand!). Ella even plays along with her farm truck that transports a big dairy cow. So i roll out of bed and there is my little partner telling me it is time to go to work Daddy. My response is we have to get some coffee first Liam. He agrees and he proceeds to pretend that his orange juice in a big boy cup (no cover) is his coffee. So just like real world workers Liam and I start our work day with a coffee break! We sit at his and Ella's little table and drink our coffee while our trucks and tractors are readied for their grueling day. Daddy is the one to break up this union sponsored break and proclaim that it is time to get busy. Liam tells me that my job is to drive the ship. Basically I am the barge that gets to haul the trash away and Liam gets to drive the shiny orange dump truck whose job is to pick up the trash cans and their content(crumpled paper) and return the trash to the dock where it is loaded into my garbage ship. Sometimes I get the privilege of driving the tractor with the loader on the front but it really depends on my very hands on micro-managing boss. The work is interrupted every 5-10 minutes by Liam as he calls a coffee break, again just like the real world. What a great way to start a day. I treasure each and every moment like this and am constantly reminded how truly precious any one of these moments with Liam might be.
I have been reminded of this in a very dramatic and painful way several times in the last week as a close founding member of the Band of Parents lost his pride and joy, Austin Melgar, to neuroblastoma and then again just 2 days ago as one of the families in the Band lost their daughter Courtney Saunders after her long and courageous fight to live. I read a journal entry yesterday by the parents of Emily Adamson and it is without a doubt one of the most courageous and gracious displays of emotion http://www.caringbridge.org/fl/emilyadamson/index.htm. I was again reminded of how tenuous and uncertain each child's situation is at any given point in time. I am the one who actually posts the obituary for each child on the Band of Parents website and it is this small task that I find harder to do than anything I have ever had to do in my life. Yet it is an honor I could not possibly relinquish.
I look around the city during my cab ride to and from the office and the world around me seems like such a charade. I know that two lovely children lost their right to this charade we know as life. It is troubling to me that no one knows and I feel like everyone should know. Everyone sitting in the Starbucks on the corner should be reading about the magical personality of Austin Melgar. The people standing on the corner waiting to buy their lunch should be looking at a picture of Courtney and her sister and be smiling from ear to ear as they are reminded of such young sibling love and camaraderie. How can a family fight a battle for 4 years and not be pinned as heroes? I would argue that what any one of these families face is not much different than what a soldier might endure on a tour of duty. A soldier often gets to choose to fight where a family has no choice. A soldier might lose his or her life and I am certain that any one of us would lay down our life if it meant that our child would live. The threat of a loss of life is constant in both cases but the loss of an innocent child whose potential has yet to be realized and whose opportunity is literally stolen will forever leave a a parent numb as it goes against the agreed upon rules of nature. I am by no means diminishing a soldiers risk and commitment to serve but instead making a point that we have parents who are heroes and the world just doesn't know it or seem to care. We have children who have hurt like we might never imagine and tolerated torturous treatments with grace and the heart of a lion. Yet as I look to the world around me it seems like no one knows of such heroes. I think if they did there would be a parade down 5th. avenue each year to honor such heroes. We do it for athletes who have been more than compensated for their contribution to what is really nothing more than entertainment. I realize that this fight is our fight and those around us just cannot truly imagine the battle that many must wage each day against an enemy that today is stronger and fiercer than ours. I stare out of my cab window deeply troubled knowing that another child's tender life hangs in the balance... and yet the world spins madly on.