Tonight's picture was taken during Halloween of 2007. Mattie was in kindergarten at that point. This was the first year Mattie and I went out together to pick out his costume. He was very excited about this notion. He had it in his mind that he wanted to be an air force pilot. I believe his trip to the Andrews Air Force base's air show in the spring really caught his attention. When we got to the costume store the only pilot costume they had was for a Navy pilot. However, my friend Charlie who is a retired Lieutenant Colonel in the Air Force rectified that problem. She sent me all sorts of Air Force patches which I literally sewed into Mattie's costume. The outfit wasn't complete without the hat, which my neighbors gave Mattie! Needless to say Mattie had a great Halloween that year with his friends.
Quote of the day: There is a voice inside of you that whispers all day long,"I feel this is right for me, I know that this is wrong."No teacher, preacher, parent, friend or wise man can decide what's right for you--just listen to the voice that speaks inside. ~ Shel Silverstein
I started my day by going to my zumba class. I haven't been to class in two weeks, so it was good to return. I like hearing the music and moving around and our teacher has a wonderful demeanor and disposition. After class, I went with my friend Heidi for tea. Well we started with tea, but our talking led into lunch. We hadn't seen each other for three weeks, so it was nice to catch up. It was a true fall weather day, cool and crisp, but thankfully the sun was out.
Over the past day or so, I have had the opportunity to chat back and forth with the lead psycho-oncologist who has been working with the Foundation on our national psychosocial standard of care project. This clinician and researcher is going to be presenting one of her most recent studies at an upcoming international conference and she wanted to get my take on the study and the results. Understanding the science of conducting and interpreting research are skills most people with a doctoral degree possess, but what makes my particular situation unique is that I not only understand the science, I lived the nightmare of childhood cancer. I can instantly read through the data and tell you whether the observations make sense.
The study focused upon the emotional connections between couples and how this connection can be impacted by cancer and therefore potentially alter marital satisfaction. Believe it or not this is the FIRST study of its kind! I emphasize FIRST!!! I think that is rather stunning in all reality especially when one of the first things the social support staff tells you at the hospital is....... your child's diagnosis can be difficult and challenging to a marriage. I remember when I first heard that I wanted to throttle someone!!! Mainly because it seemed so judgmental and condescending! But when your social worker spouts off this information what is it really based on???? The answer is anecdotal evidence. Of course it is true, but having data (like this current study) to support these anecdotes is key! Without data you can't determine how best to assist parents and couples.
As I combed through the power point slides, several things caught my attention. One slide in particular listed the stressors couples face during the treatment process. There were about five significant ones listed and one was......your child doesn't want a particular parent in the room. Basically asking the parent to leave the room. That may not sound like a stressor, but it is a huge one. Especially when you are trying to help your kid and have potentially been in the room the whole day. It can feel like a major rejection as a parent! Mattie threw my parents and me out of the room on many occasions. He never did that with Peter. When Peter would come from work and enter the PICU room, he was deemed fresh blood by Mattie. Naturally I was eager for adult conversation, but if Peter chatted with me, that would mean he wasn't playing with Mattie. So during times of frustration and stress Mattie literally would tell me to leave. I have to admit I did not always handle it well. On one occasion I left the room, never the floor, and walked over to the transplant unit. It had to be around 9pm, and I sat on the bench outside that unit. Literally I had my feet up on the bench, I was slouched over, had tea with me, and my blackberry. I remember being angry and exhausted. But the fun that night only began. The head of the transplant unit came up to me. This physician literally asked me if it was appropriate for me to sit outside on the bench in this fashion! He is lucky I did not crown him over the head! But then I realized, he thought I worked at the hospital. After all he saw me enough. I may have put in more hours than him at the hospital. When I told him I was a parent and not an employee, he was deeply embarrassed! Funny no?!
Any case, this study resonated with me but at the same time, I asked the researcher how on earth interventions can be designed to assist couples in the throws of cancer treatment. It comes down to this, what works in a therapy session may not work in real time within a hospital room. The top two factors couples need to maintain satisfaction is the ability to talk with one another and being emotionally connected. Both factors can be close to impossible to achieve living in a hospital. So the reality is that cancer treatment almost sets the stage for poor marital satisfaction. Providing interventions is also difficult because there is just NO time. Parents are strung out and whenever there is a moment of down time the last thing one wants to be doing is learning coping skills, not to mention that in many cases both parents are not always present at the hospital at the same time. With all this being said, I am very happy to see that research is beginning to examine the much needed stresses of parents caring for a child with cancer and how cancer impacts a marriage..... and ultimately how cohesive a family is, in my opinion, impacts the child's care and treatment.
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