Tonight's picture was taken on January 13, 2009. Mattie was in NYC and staying at the Affinia Gardens Hotel, right near Memorial Sloan Kettering. That week Mattie was going to start his experimental treatment at the hospital. When we checked into the hospital we had this express mail box awaiting our arrival. The box was a care package to Mattie from Linda, his child life specialist at Georgetown University Hospital. The box was filled with all the things Mattie loved to play with from Legos to magical wands. As you can see Mattie was smiling or should I say beaming that Linda remembered him in this way.
Quote of the day: Never worry about numbers. Help one person at a time, and always start with the person nearest you. ~Mother Teresa
I received an email from a friend of mine asking whether it would be okay if she connected me with a friend of hers. Her friend's son, who is only 6 years old, was recently diagnosed with osteosarcoma. The same type of cancer Mattie had. I am always happy to talk with any parent who is dealing with a childhood cancer diagnosis.
I am not really sure how the world thinks parents should react to the news that their child has cancer! For the most part people are looking for us to break down, cry intensely, and basically be full of emotion. For some this very well may happen. But for others of us, you will see nothing. No expression, no tears, no melting in a puddle, or any other volatile image you would like to conjure up. Instead, we are simply in shock and in shock we do not have room for all the emotions. I honestly think to some extent that shock and numbness are healthy coping mechanisms. Because when in this state, what kicks in is the ability to mobilize forces, to think rationally, and to make difficult and tough decisions. Thankfully... because after your child is diagnosed you are flooded or should I say bombarded with information and the need to make QUICK decisions. This doesn't lend itself too well to curling up in a ball and weeping uncontrollably.
Now one would think that only people who have no experience with childhood cancer would have these feelings and myths about what is the appropriate way to react to hearing the news.... "your child has cancer." Unfortunately I experienced the same level of cluelessness from the social work staff. One professional in particular I will never forget, and probably never will. She evoked intense feelings of anger within me, and disappointment for not having the sensitivity to understand what my family was facing.
During Mattie's first week in the hospital receiving chemotherapy, a social worker came up to me and basically in no uncertain terms told me she wasn't happy with the way I was reacting to Mattie's diagnosis. She felt I was expressionless and emotionless and also needed time away from the pediatric unit and Mattie to care for myself. Keep in mind this was Mattie's first week of chemotherapy, and I did not know the hospital, the people working there, or how Mattie was going to react to the drugs. Not only did this social worker judge me, she had the audacity to remove me from the pediatric floor altogether and checked me into the hotel on campus. Mind you all the while I said I did not want to leave Mattie's side, nor did I want a hotel room. Needless to say, after the social worker left me side, I returned the hotel key (never to go back!), and immediately called the chief of pediatric oncology and reported this social worker. I wanted an apology from the social workers for her behavior and told the doctor that she knew nothing about me or my relationship with Mattie. If the social worker did then she would have known that even when Mattie was healthy I never left him alone, so certainly battling cancer it wasn't going to happen.
It is very natural for us to judge and even express our opinions about how a parent is behaving or not behaving during a childhood cancer battle. But I guess my feelings on this is..... unless you have lived this process, and have your own insights, I would be very cautious about doling out advice and commentaries. Chances are when we allow parents to be and act the way that they need to, eventually we will learn about their feelings and emotions. Such expressions need to happen on the parent's timeline, NOT a mental health providers! My one piece of advice that I shared with this mom whose child was just diagnosed is this.... there is NO right or wrong way to emotionally manage and handle a childhood cancer diagnosis (and the entire cancer journey for that matter) and anyone who says differently simply doesn't get it.
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