Tonight's picture was taken in February of 2006. That was Mattie's first year of preschool and all the children were exchanging cards with one another for Valentine's Day. We could have bought cards, but I decided.... why not make them together. Mattie loved hands on crafts and projects, especially when I converted the living room floor into an art studio. We made some beautiful cards together and I am so glad I have these memories.
Quote of the day: On Valentine’s Day, we are reminded what our relationships could be like the other 364. ~ Steve Maraboli
How do I feel about attending conferences...... well to me it is a very conflicted feeling I have being here. Naturally it is wonderful to share Mattie's story, to highlight the standards, and to engage other minds and hearts into the project to implement standards. Yet on the other hand when I am surrounded by clinicians and researchers, they tend to think they are the gurus on cancer. Certainly they are from a professional standpoint, but regardless of how many years in the field they work, they do not share the lived experience with us. Having your own child diagnosed and die from cancer puts a whole other lens of complexity on the situation. Therefore hearing discussions about what works and things that need to be done to make care more effective, makes me laugh internally. Because you know the feeling when you are listening to a conversation and you have insights into the discussion that no one else has! Yet others know you have these insights and aren't curious to hear them.... that causes great frustration and stress for me.
Before Mattie developed cancer, I attended many conferences as a mental health professional. I even had leadership roles within several national associations. Perhaps it is my understanding for the politics behind associations that clouds my view point of them. Either case, I found I needed to retreat today from hearing this networking chit chat. Our 90 minute plenary starts tomorrow at 12:25pm. Mattie Miracle has paid for many of the speakers to present on this plenary... and the speakers range from researchers/clinicians, to parent advocates and a childhood cancer survivor. Mattie Miracle feels that hearing from a survivor and parents is crucial and adds a vital dimension to the presentation. But it wasn't only the presentation. The standards had families involved throughout their development process. Again, from my perspective you can't develop tools for a population without involving the population in question. That may seem like a no brainer, but this is something Peter and I advocate for all the time..... giving children and their families a voice.... in research and in directing clinical care.
1 comment:
Vicki, As a PlayLady, your hands on Vantine project was in the scope of many activities, the children did with the materials provided. It was such fun to see each child's own idea of what his project should look like. Seeing your transformed room as an art studio makes me so happy. It looks like the perfect places for Mattie to be in his artistic glory!
As a PlayLady, I always saw 2 positions to th job. The first was to provide diversion for the children, whether it was a short visit or long. The play table was the place where the kids could choose how they wanted to spend their time! Of course there was constant movement to see the Dr., get blood drawn, get connected but all the while activity was proceeding. The other part was as an active advocate for the parents. This included many areas to help parents use their voices to be heard. They after all, lived the life of childhood cancer with their child. Without this important acknowledgement, communication that is vital will be lost. Parents & children know what they need in the area of psychosocial support. They need the advocate to make sure their voices aren't lost while all focus is on medical management of childhood cancer. The two areas have to bee on the same page! It is essential! Thanks to Mattie Miracle for working so hard & diligently to make this happen!
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