Friday, September 17, 2010Tonight's picture was taken on June 15, 2009. The day of Mattie's sternotomy. It was very early in the morning, and Mattie had a team of people around him trying to take his mind off of his third massive surgery. Tricia, Mattie's outstanding HEM/ONC nurse (in aqua) was with us, along with Linda (Mattie's childlife specialist), and Dana. Linda asked Dana to come in and cheer Mattie up that day. Dana is a Georgetown student but she is also an amazing juggler. She entertained all of us that morning. She literally took our minds off what was going to happen next. The irony is Linda engages children, but what I quickly learned was I needed Linda just as much as Mattie did. Linda assessed situations and people beautifully, and honestly I am not sure how we would have ever survived without her. The energy in Mattie's PICU room that day was electric, and I think it made a difference as he went into surgery, because he handled it so well, and his recovery went SO quickly.
Quote of the day: The conventional explanation, that God sends us burden because He knows that we are strong enough to handle it, has it all wrong. Fate, not God, sends us the anguish. When we try to deal with it, we find out that we are not strong. We are weak, we get tired, we get angry, overwhelmed. We begin to wonder how we will ever make it through all the years. But when we reach the limits of our own strength and courage, something unexpected happens. We find reinforcement coming from a source outside ourselves. And in the knowledge that we are not alone, that God is on our side, we manage to go on. ~ Harold Kushner
I have been absorbing information all week as it relates to pediatric cancer. I have tried listening to what others have gone through with their children, and one thing that keeps surfacing in these conversations is the role of a mental health professional during the time of a pediatric cancer crisis. I think so many of us hope that when we deal with social workers and psychiatrists in various hospital settings, that they will have the training and sensitivity to really help support us and our families through cancer. After all, I can't think of a more relevant and needed time for support and intervention than when you receive a cancer diagnosis, when you undergo treatment, as well as when treatment ends. However, I think so many of us who have battled with cancer realize that our mental health providers do not always understand us or our situation.
Initially some of you will recall that I had many issues with the social work team assisting us. I was told initially that I wasn't handling the news of Mattie's cancer well (because I was numb and showed no emotion), and was also escorted during Mattie's first hospital admission (where he was going to receive chemo) to the hotel on the University's campus because these professionals felt that I needed a break and shouldn't spend 24/7 with Mattie. In fact, though I realize all of these interventions were implemented to help me, at the time, they only angered me, and caused more stress. It took a while for the staff to get to know me, and trust that if I needed help, I would ask for it. Mattie's social worker, Denise, learned quickly that asking me to take a break, WASN'T going to happen. I wasn't going to leave Mattie's side, and I could see she grew to respect that as well as my decisions. She then helped the rest of her staff understand my view point. But here is the thing. As mental professionals we are so ingrained to diagnosis and assess for issues. Under normal circumstances, when you see a person not sleeping and under intense stress, the immediate response naturally is to try to address it, and perhaps throw therapy and a support group at the problem. That however is exactly the problem! Nothing about pediatric cancer is NORMAL and therefore how you treat children and their families under such conditions must be examined in a different light. I think it seems very understandable for a parent to feel anxious, stressed out, angered, and even depressed when dealing with pediatric cancer. These are normal reactions, and instead of medicating them or trying to cover them up, I think it is important to accept these fears head on. Mental health providers need to be our advocates during this process, rather than labelling us as problematic. I continue to be amazed by the stories I hear from parents whose children have cancer, and I so appreciate these connections. Because it is through these conversations, that our Foundation can help to improve the quality of psychosocial services available to families.
As I write tonight, I am extremely tired and am struggling to put words together. For the next two days, Peter and I are staying at Ann's house and spending time with her children, while she and Bob are away. Naturally over the course of this last year, I have spent a great deal of time with Ann's children. So watching them now is almost second nature. We are all very used to each other. I had the opportunity to chat, play, and eat with the kids tonight, and I suppose watching them and being responsible for them, made me reflect on who was especially missing in my life. At times it is hard to believe that Mattie isn't right next to me here, in the mix of things. I also had the opportunity to see Mary (Ann's mom) today. As I was leaving her assisted living facility, Mary said to me that she wished she could buy me a gift. She wanted to try to express her gratitude to me for coming to visit her when I can. My response to Mary was I needed NO gifts. The gift is our friendship, and with that, she smiled.
In addition to there being a cupcake week (which I wrote about last week) in honor of childhood cancer awareness month, September is also Make a Wish Month at Coldstone Creamery. Charlie sent me this information, and I wanted to pass it along to our readers, since I continue to be impressed with the organizations who are trying to make a difference for children and their families fighting cancer.
All month long, Cold Stone Creamery is helping make wishes come true for children with life-threatening medical conditions. Visit any Cold Stone Creamery store and show your support for the Make-A-Wish Foundation by purchasing a Make-A-Wish paper star for just a dollar!
http://www.coldstonecreamery.com/promos/makeawish/index.html
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