Tonight's picture was taken in August of 2009. Mattie always wanted a ride-on vehicle and when he was healthy my reaction to that was simply, "no." It seemed too costly, not practical, and this was only the top two reasons on the "do not get list." However, when you find your child is dying from cancer, it is funny how your perspective quickly changes. Since this was on Mattie's wish list, this list was quickly granted. Mattie named this vehicle that my parent's gave him, "Speedy Red." Since Mattie was weak and was attached to all sorts of IVs and oxygen, there was no way I was going to let him operate this without me on it. He tolerated me with him for a while until he got the hang of using a gas pedal and a break. But then after that he really wanted the independence of driving by himself. So if you can picture him driving and me running around after him, that was the scene in our commons area!
Quote of the day: There are moments when I wish I could roll back the clock and take all the sadness away, but I have the feeling that if I did, the joy would be gone as well. ~ Nicholas Spark
Our core team members each highlighted psychosocial research, but within their presentations also talked about the standards of care project as well as made it known to the audience that Mattie Miracle was the impetus for these Standards and is the significant funder of the project. Clearly Peter and I are motivated to do this work to help other children and their families, but of course what lies at the heart of what we always do is Mattie. What Mattie suffered and endured was super human and almost impossible to describe. In fact, I think that is most likely why when given three minutes in front of this large audience on Monday I elected NOT to go into all the gory details of Mattie's journey. If I did, that would have taken more than three minutes alone and then I would never have gotten any of my messages across. Mattie's battle was painful, significant, and psychosocially brutal. It will remain with us always and I suppose that is why on some level we feel compelled to correct a wrong.
Needless to say the voice of parent advocates and that of Melinda's were crucial at this workshop. Though researchers and clinicians have the best of intentions and maybe the experts in their fields, they really still lack the personal insights we have of living through this ordeal. As the workshop very poignantly pointed out..... it is vital to give a voice to the child, the family, and the clinician in cancer care. All three play a role and when collaborating together, most likely optimal care is achieved.
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