Tonight's picture was taken in July of 2008, about two weeks before Mattie was diagnosed with cancer. As you can see, he was playing chase with JJ, our resident Jack Russell Terrier. In fact, Mattie and JJ grew up together. JJ was the first real encounter Mattie had with a dog, and JJ inspired him to want a dog of his own.
Quote of the day: It's hard when you miss people. But you know if you miss them, that means you're lucky. It means you had someone special in your life, someone worth missing. ~ Nikki Schiefelbein
I am slowly digging out of email, as I did not pay much attention to requests while I was gone. I was able to have a peaceful day today to do some work, and in the midst of digging out realized that I have 12 proposals to review for our Mattie Miracle grants. With less than a week to review all of them. So I started working on them tonight. Mind you we received over 20 initial letters on intent and from that only 12 were invited to submit a full proposal to be considered for our $10,000 grant. You should know that a team of researchers are evaluating these proposals, but given that Mattie Miracle is funding one of these proposals, I feel it is my duty to read all of them and express to the committee my opinion.
What I love about reading proposed research on childhood cancer, is that for me this is a very lived experience. From a pragmatic sense, what researchers are proposing sounds good or even theoretically makes sense. But that is the difference between theory and reality. I know the reality all too well which enables me to read a proposed research study and reflect on my own experiences and experiences of those I have helped to determine.... is this research feasible? Would any child or parent really benefit from such an intervention?
Several of the studies are proposing electronic based interventions, given that parents of children with cancer have limited time to meet for support. I can appreciate this because it is true parents are overwhelmed and are managing so much that seeking emotional support doesn't fall high on the list. Yet I continue to be surprised when I read how brief solution focused therapy appears to be effective whether it is supplied face to face with a therapist, or whether the intervention is provided through a computer (and I don't mean emailing a real person, but instead going through an on-line tutorial, like a training program). Every time I read this my head starts shaking! It is shaking because in my opinion the benefits of therapy and support come from individual connections. This is the cornerstone of so many therapeutic theories and philosophies. However, we are firmly planted in the age of technology and as such, I see research too is migrating with the times.
I know all too well that when Mattie was in the hospital, my cell phone became my main source of support. So much so, that I can safely say that my cell phone addiction began right after Mattie was diagnosed. However, I was connecting with friends with people!!! I wasn't looking to my phone for solutions or clinical support through on line training. Given the nature of childhood cancer and the volatile nature of living with this disease each day, to me the human connection is needed. In fact, some of Mattie's psychosocial providers were successful with us, because they truly worked hard to get to know me, Mattie, and Peter. If they would have offered me electronic support through some sort of on-line program, I would have been turned off immediately. They would have lost me. So I am biased but I am trying to keep my feelings in check when evaluating these proposals as I am aware of the role technology plays in our world today.
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