Tonight's picture was taken in December of 2002. Mattie was 8 months old and doing one of his favorite things.... walking. Mattie did not like sitting still and he most definitely wasn't into the whole crawling thing. He wanted to go from sitting to walking ASAP. I love this photo because it captures Mattie in motion, with the reindeer on his back side.
Quote of the day: Though chronic pain affects 1 in 5 children, parents are seldom taught how to help manage symptoms. ~ Rachael Coakley
This week a friend of mine sent me the article below entitled, Your child and chronic pain: How to 'dial down' the agony. The article is written by a pediatric pain psychologist, and she writes about pain, not only from her professional perspective, but from having been in an ICU with her own son. She recounts for her reader, how harrowing it was to see her son in agony and how she felt helpless in managing the issue, not to mention felt overwhelmed by the hospital, its staff, and all its noises. I am quite certain that long term exposure to living in a hospital has traumatic consequences. We experienced it first hand through Mattie's eyes and our own.
What captures my attention in this article is the author points out that helping a child cope with long term pain is truly a family effort. That parents must be treated as part of the care team and as such be trained on ways they can effectively help their child cope. She goes on to points out that when parents are thrust into such an chaotic medical environment, our own levels of stress, anxiety, and frustration set in. Sometimes making it difficult to know how to best help the child. The second noteworthy thing she mentioned was the importance of interdisciplinary care. Meaning in Mattie Miracle lingo..... IT'S NOT JUST ABOUT THE MEDICINE. In fact, managing pain has a real psychological component to it. In Mattie's case all the coping skills possible wouldn't have helped contain his pain given the nature of his cancer, but providing him psychosocial outlets were vital and I noticed they did impact his mood as well as our own.
I realize the article was written about childhood pain, but as an adult, I too manage various chronic forms of pain. I can't say that I could manage them without medicine, but I would concur that my outlook and attitude are vital. They are what force me to get up and work, even when I don't physically feel up to it. When I am engaged with the world and physically active, I still have a migraine and muscular pains radiating from my hip, but working is a positive distraction. Just like the author mentions that kids with chronic pain need routines. Such as school. Routines are vital to all our health, regardless of age.
No matter what kind of day Mattie was having while on treatment, we tried to do some things consistently. Because at the end of the day the activities we choose to do, give us control over our lives. Control that pain could easily take away from us if we let it.
Your child and chronic pain: How to ‘dial down’ the agony:
https://www.washingtonpost.com/national/health-science/your-child-and-chronic-pain-how-to-dial-down-the-agony/2018/11/09/7d141a02-e12c-11e8-b759-3d88a5ce9e19_story.html?utm_term=.60a0e7652ba8
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