Wednesday, January 18, 2017
Tonight's picture was taken in January of 2004. Mattie was a year and a half old and very ON! He loved boxes, playing with them, building and re-creating all sorts of shapes and structures. With Mattie there was no end to the possibilities and my biggest joke was that the boxes always entertained him more than the toy inside.
Quote of the day: In times of stress, the best thing we can do for each other is to listen with our ears and our hearts and to be assured that our questions are just as important as our answers. ~ Fred Rogers
Mr. Rogers was brilliant. The questions are just as important as the answers..... as is being heard. When under intense stress, anxiety pops up and can take over. In fact the stress and anxiety maybe even more important to manage and respond to than the original issue that was presented. We literally waited the entire day to get my dad's CT results back. Honestly, does the medical system think people are just living a care free life until they bless us with a phone call? Of course NOT, we are waiting on the edge until someone decides to fill us in with test results. Thankfully whatever my dad's situation is, it isn't cancer. So we are all breathing a sigh of relief tonight. Since we know all too well what that road looks like.
In a way, the geographic distance between myself and my parents was probably beneficial today because I have a way of making doctors' offices very edgy. Because I persistently will drive each person crazy until I get results. My anxiety prevents me from waiting around! I understand the origin of this anxiety, but strangers do not and instead view me as difficult. I frankly don't care how you view me, I just want my questions answered. Mattie's cancer battle taught me SO MANY things about our health care system. It has many flaws, but one thing seems to be consistent..... if a diagnosis of cancer is probable from scan results then you are typically contacted and told right away. There isn't a wait a whole day for answers approach. By midday today when my mom did not receive a phone call about results, I took that as a good sign. But then again, I don't know their hospital system, and perhaps things work differently there. Nonetheless, I have tested my theory with myself, my lifetime friend Karen and now my dad. All of us are in different states and all of us did not receive testing results immediately. In all three cases, cancer was not the diagnosis. So I am sticking with my theory of bad news travels quickly.
Meanwhile today I went to Mattie's school to work with a technology class who has taken on a Mattie Miracle project all semester. They are working to design some models with a 3-D printer for the hospital. For example a model of an MRI machine so children can touch it, ask questions, and learn about the process before a scan. As MRI can be daunting and intimidating. Any case I went through the motions today because my mind was else where and yet I really needed to concentrate because tomorrow we are presenting on Mattie Miracle at NIH and I am still desperately trying to wrap up plans for Tuesday's Roundtable! Wish me luck.
Tonight's picture was taken in January of 2004. Mattie was a year and a half old and very ON! He loved boxes, playing with them, building and re-creating all sorts of shapes and structures. With Mattie there was no end to the possibilities and my biggest joke was that the boxes always entertained him more than the toy inside.
Quote of the day: In times of stress, the best thing we can do for each other is to listen with our ears and our hearts and to be assured that our questions are just as important as our answers. ~ Fred Rogers
Mr. Rogers was brilliant. The questions are just as important as the answers..... as is being heard. When under intense stress, anxiety pops up and can take over. In fact the stress and anxiety maybe even more important to manage and respond to than the original issue that was presented. We literally waited the entire day to get my dad's CT results back. Honestly, does the medical system think people are just living a care free life until they bless us with a phone call? Of course NOT, we are waiting on the edge until someone decides to fill us in with test results. Thankfully whatever my dad's situation is, it isn't cancer. So we are all breathing a sigh of relief tonight. Since we know all too well what that road looks like.
In a way, the geographic distance between myself and my parents was probably beneficial today because I have a way of making doctors' offices very edgy. Because I persistently will drive each person crazy until I get results. My anxiety prevents me from waiting around! I understand the origin of this anxiety, but strangers do not and instead view me as difficult. I frankly don't care how you view me, I just want my questions answered. Mattie's cancer battle taught me SO MANY things about our health care system. It has many flaws, but one thing seems to be consistent..... if a diagnosis of cancer is probable from scan results then you are typically contacted and told right away. There isn't a wait a whole day for answers approach. By midday today when my mom did not receive a phone call about results, I took that as a good sign. But then again, I don't know their hospital system, and perhaps things work differently there. Nonetheless, I have tested my theory with myself, my lifetime friend Karen and now my dad. All of us are in different states and all of us did not receive testing results immediately. In all three cases, cancer was not the diagnosis. So I am sticking with my theory of bad news travels quickly.
Meanwhile today I went to Mattie's school to work with a technology class who has taken on a Mattie Miracle project all semester. They are working to design some models with a 3-D printer for the hospital. For example a model of an MRI machine so children can touch it, ask questions, and learn about the process before a scan. As MRI can be daunting and intimidating. Any case I went through the motions today because my mind was else where and yet I really needed to concentrate because tomorrow we are presenting on Mattie Miracle at NIH and I am still desperately trying to wrap up plans for Tuesday's Roundtable! Wish me luck.
1 comment:
Vicki,
Good luck tomorrow at NIH. and good luck at the Round Table on Tuesday. I look forward to hearing about both events!
Waiting for test results is unnerving. Anxiety starts from the time something is scheduled until you hear the results. I can't understand why we end up waiting so long. There surely needs to be a better system. I am glad to know they ruled out Cancer and what they find can be remedied quickly.
I love Mr. Rogers. I have a book of his on my table in the family room. Actually it moves around the house. His message was simple, easy to understand. Yet, very important. He spread kindness always. The world would be a better place if we all lived in his neighborhood.
I love the picture of Mattie!!! Love that he liked boxes and the unending things, you can do with them. There were kids who painted, glued, spread glitter. Mattie would have loved my Play Table and II would have loved his creativity!!!!
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