Tonight's picture was taken in May of 2002. Mattie was one month old. But look at his expression! Mattie was very alert, tracking me with his eyes, and absolutely curious. To me this photo is priceless. That week I took hundreds of photos of Mattie, because I was looking for the right photo to put on the front of his birth announcement. I did not select this one, but it was a photo that was as equally intriguing!
Quote of the day: No one cares how much you know, until they know how much you care. ~ Theodore Roosevelt
On Wednesday's blog I posted an article entitled, "Does Medicine Overemphasis IQ." That evening I happened to also post the article to my Facebook page. I have been intrigued by several of the comments people gave me in reaction to my posting.
Frankly, it never dawned on me that writing this blog and sharing my story about Mattie has actually inspired other people to advocate for their own medical care, or the care they are providing to an adult loved one. When I posted the article to Facebook, I got two noteworthy comments. Comments that have remained with me.
I have copied the comments below. I figured both authors wouldn't mind me sharing their writings here, since they submitted them to me in a very public forum (Facebook). I am reading a book now, that has absolutely NOTHING to do with this certain topic. The only reason I bring it up, is the main character in the book is reading a stranger's blog on the internet. The blog author poses a question to the internet ether....... is anyone out there? Which really means..... is anyone reading her words and understanding her thoughts?
Any case as soon as I read, 'is anyone out there," it immediately resonated with me. This of course is the limitation with writing a blog! You don't know if anyone is out there, is anyone reading, and most importantly is what you are writing making an impact?
Then of course, along came these two messages. Messages not posted on the blog, but to my Facebook page. The messages were written by women I have never personally met, yet both are Foundation donors. They do not even live in my region! However, they credit reading the blog for giving them the courage to advocate when competent and compassionate care isn't be provided. In one comment below you can see that the author specifically says that she "thanks a boy named Mattie."
Part of Mattie's legacy is to help others learn from what he endured. In turn I try to use that knowledge to guide the Foundation's mission so that comprehensive cancer care includes psychosocial care. Yet in all my blogging and advocating, I did not make the conscious connection that what I have been discussing on this blog over the last 9 years is applicable to everyone. Anyone seeking medical treatment will run into many of the same hospital issues...... gruff staff members, miscommunication, insensitivity, mismanaged pain control, and no coordination of care among different specialists.
I can't thank Dianna and Cheryl enough for sharing their thoughts with me and for letting me know THERE IS SOMEONE OUT THERE and people are listening! Listening and learning from Mattie's story, which to me is important because there has to be a purpose for all the suffering Mattie endured.
Message from Dianna:
This message is from one of our loyal Foundation supporters. I never met Dianna. She lives in Louisiana and she got connected to us through Mattie's blog...............................................................
Oh Vicki! I wish that I could give you a hug. My mom is in the hospital, and she had an awful day. In a word, she has been treated cruelly. In the past, we would have just been silently furious when the highest ranking staff member we could talk to did not call us back and ignored multiple calls.
I thought about this post and Mattie and your mission, and it empowered me to research to find the email addresses for the Hospital CEO, Chief Financial Officer, Chief Nursing Supervisor, and Administrator. I sent them a very detailed email directly this evening. Within 20 minutes, the Nursing Supervisor who replaced the one who ignored me, called me and was very compassionate. He assured me that our frustration was justified and said the hospital was completely in the wrong. He also said that one of the head people I sent the email to would call me in the morning.
When I called my dad, who was treated very poorly by staff all day, and knows nothing happens on Saturdays in the hospital, he was shocked and beyond relieved at the response we received. I told him, “You can thank a boy named Mattie for that.”
I know that your primary goal with Mattie’s Foundation is to serve kids battling cancer. But, I hope you know that this legacy you are creating for him branches out and touches folks even not facing childhood cancer in a deep and profound way. From the bottom of my heart, thank you. I will pm you the letter. It’s pretty long, with a lot of medical stuff, so please don’t feel obligated to read it all. I just wanted to show you, in writing, just what Mattie is accomplishing. Gigantic Hugs!
Message from Cheryl:
This message is from Cheryl. Cheryl is our cousin, on Peter's side of the family. We never met one another as she lives in Missouri, but we have many things in common. Our sons have the same birth date and her dog is also named,
Sunny!..............................................................
I finally had a chance to sit and read this article. I completely agree with it. I loved how Dianna stated that you and Peter are creating a legacy far beyond pediatric cancer patients' psycho-social needs. You are creating a legacy for all of us with our own doctor/patient interactions. Mattie is such a bright sunshine spot for all of us! One of my best friends was just diagnosed with breast cancer this past week. She is currently interviewing surgeons. I am encouraging her not to just look at their credentials, but to see how they interact with her one-on-one. I'm praying she finds the right doctor who will treat her as a whole person and not just a disease.
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