Tuesday, October 2, 2018

Tuesday, October 2, 2018 --
Mattie died 472 weeks ago today.

Tonight's picture was taken in October of 2004. That day, I joined Mattie and his preschool on a fall hayride at Butler's Orchard in Maryland. Mattie lasted at this particular preschool for only two months. The director was a nightmare and the school, despite its reputation, was not a good match for Mattie. With that in mind, there was NO way I would let Mattie go on a bus trip with these people, without supervising the process. The highlight of the trip was snapping this photo of Mattie in the pumpkin patch. Mattie absolutely loved being in the field, seeing pumpkins growing on the vine, and selecting his own to take home. 


Quote of the day: We’re here for a reason. I believe a bit of the reason is to throw little torches out to lead people through the dark. ~ Whoopi Goldberg


Peter and I completed two days of training. Training that is geared toward mental health providers at hospitals. As is typical, we had a difference of opinion about the nature of the training and most importantly its ability to be implemented with patients and families. 

First of all, in a hospital setting the patient is the child, NOT the family. Therefore clinical services are directed solely to the patient. Health care providers talk about family centered care and the importance of including the family and managing their needs, but the problem is there is NO time or reimbursement pathway for to provide this care. So of course our question was..... how is the intervention in front of us today going to be offered to families at treatment sites? A simple question, but has complex answers.

In addition, before coming to this training, I had issues with the rigid nature of this model. A model that teaches problem solving skills in linear steps. The problem is many of us, especially those who are educated, don't just think linearly. We can co-process many steps in the model at the same time. Despite my best attempt at experiencing my feelings about this, I felt I wasn't heard. Which unfortunately only breeds frustration in me. We have been at this for 8 hours today, so I am frazzled and agitated. Poor Peter!!! He is such a trooper and truly knows how to manage my intense feelings. I do want to mention that Peter was equally frustrated today, so this isn't just a Vicki thing. 




After the day long session, we journied through the Cancer Survivors Walk. I wanted to go back there because I read there were plaques and I wanted to read them.

As soon as Peter saw the first plaque, he warned me.... "you aren't going to like this."

Not only is the wording here awkward, but the notion of a CURE is so misleading. Especially for children. Mainly because, there are significant long term ramifications from treatment. Significant issues such as secondary cancers to mental health issues. In fact, I would say that when this reflection garden was created, children with cancer weren't even factored into the equation.

Honestly???? What on earth! Cancer is the number one killer of disease for children in our country.

There maybe treatments, but these treatments are toxic and in many cases inadequate. Keep in mind that four to five children die from cancer EVERY DAY! 

These plaques further irritated me after a very long and conflicting training for us