Tonight's picture was taken in October of 2006. This happens to be one of my favorite photos of Mattie and me. I think you can see we looked a lot alike from our eyes to our smiles! That weekend we took Mattie to a fall festival. Which was a typical occurrence for us to ring in the change of season. As Mattie grew older, he loved the whole experience. Especially the pumpkin picking, the slides, and all the activities.
Quote of the day: Fire in the heart sends smoke into the head. ~ German Proverb
I had a meeting today which made me upset. I am not getting into the specifics of it here, as I have found sometimes my words are read and taken out of context. However, when I found this German proverb tonight, I knew it captured exactly how I felt. Since Mattie died, I have two speeds...... very on and very off. I rarely have energy levels and moods that are gray or in between. However, it is very easy for me to get angry now. When you think of anger, you may think it arises over someone doing something to me or as is typical with someone who is angry they will lash out and explode. In my case, the fire starts in my head!
With me, none of these things about anger apply. Most people can't tell when I am angry, unless you know me well. However, what makes me angry is not hurtful things said to me or about me. What gets me furious is a total misunderstanding of the kind of support children with cancer and their families need.
I have a lot of experience working with the health care profession, everyone from doctors to psychosocial professionals. Unfortunately across the board (it isn't field/training specific), many think they understand the psychological and emotional toll of childhood cancer and how best to meet these needs, but in all reality, they fall short. The number one reason of course is because they are looking at the issue with their clinical lens. They haven't lived the experience and in this case, I think having personal insights of having to fear for the life of your child and live long term in a hospital makes a huge difference. Which is why I am always, always perplexed with personnel and administrators who seem to think they know how to provide optimal quality of care, without truly seeking input and feedback from the consumer themselves!
Goodness gracious..... it has been 8 years since Mattie died and I still have this internal anger. I am not sure this is something that will ever go away! I imagine it won't until I see the health care system changing. Until psychosocial care is fully embraced and other families don't have a Mattie, Vicki, and Peter experience! Yet like the government, this massive change will occur at glacier speed. So in the mean time, I need to keep on speaking up. It is just the way it has to be, no matter how uncomfortable and exhausting it is!
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