Saturday, November 14, 2015

Saturday, November 14, 2015

Tonight's picture was taken in September of 2005. We took Mattie on a rowboat ride on the Potomac River. Peter did this often with Mattie on the weekends, but that day they wanted me to come along! Mattie loved being on the water and taking in everything in his environment. 


Quote of the day: Part of the problem with the word 'disabilities' is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can't feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren't able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities. ~ Fred Rogers

These are the socks Peter wore to our presentation today at the Florida Association of Pediatric Tumor Programs. I call these his Mattie Miracle socks!

I honestly wasn't sure how this presentation would go today. Mainly because in the spring of 2015, we presented at another nursing conference and we couldn't read the audience at all. They gave us little to no feedback. So I would say I went into this nursing conference somewhat hesitant. 

The Association invited and paid for Peter and I to present at their conference. They requested our attendance based on feedback they got last year from their conference attendees! Apparently attendees requested our presence and the expressed their feelings about the importance of talking about psychosocial care and our standards of care. 

Keep in mind that Peter and I were the ONLY non-healthcare professionals presenting at the conference, and I made note of that to the audience this morning. I polled the audience and asked for a show of hands regarding how many were parents, how many were in the healthcare profession and worked with children who have cancer, and finally how many are personally touched by childhood cancer. Well the majority of the audience raised their hands for my first two questions, but three out of 200 raised their hands in the audience to the question about childhood cancer personally affecting their lives. I mentioned how important it is to hear parent's perspectives and that it is from our experiences with Mattie that our vision to create a psychosocial standard of care was born. Without Mattie, I am pretty sure this standard wouldn't have been developed. 

Peter and I did a very solid and meaningful job presenting for an hour! Peter really connected with the audience of women, and we both felt they were hearing our message and were impressed and appreciative with the rigor of evidence that has been assembled to create the standards. When we were finished presenting, we literally got a standing ovation. I wasn't expecting this and was more shocked and stunned than allowing it to sink in. Not unusual for me. I find the role of presenting hard, because I feel it is important to always remain professional. Yet of course what we are presenting is VERY personal to us!! 

Check out the video of the standing ovation. Fortunately Peter was with it enough to capture this with his phone!

After we presented, we drove to the Don CeSar Hotel for a late breakfast. Loews Don CeSar Hotel is a Loews hotel located in St. Pete Beach, Florida, in the United States. Developed by Thomas Rowe and opened in 1928, it gained renown as the Gulf playground for America's pampered rich at the height of the Jazz Age and it still serves as a popular retreat for the rich and famous of today. The hotel was designed by Henry H. Dupont. Loews Don CeSar Hotel is a member of Historic Hotels of America, the official program of the National Trust for Historic Preservation.




Then we journeyed to the Weedon Island Preserve, an expansive 3,190-acre natural area located on Tampa Bay. This coastal system, comprised of aquatic and upland ecosystems, is home to numerous species of native plants and animals, an educational facility and a rich cultural history. Indigenous peoples occupied this site for thousands of years. Today, the preserve protects this wide diversity of natural and cultural resources for current and future generations. Weedon Island Preserve is also a well-known birding and fishing site.

Along our walk we saw trees covered with beautiful Spanish Moss.

We walked through a boardwalk of Mangroves. Which to me are special trees.... they really do look like they are walking in the water with their incredible root system.

What was NEW to us were these Mangrove Tree Crabs. At first I thought they were spots on the tree, since they are everywhere. But as Peter examined them, they moved! Totally amazing creatures, and actually kind of creepy when you see you are surrounded by them!

This Night Heron literally jumped out of a mangrove into the water. It was a special surprise. 

Have you ever seen trees dotted with Wood Storks?

A Red Bellied Woodpecker!

This Osprey owned this perch! He wasn't moving and was so cooperative picture wise! He caught the attention of ALL of us on the boardwalk!

There were lizards all around us too! This Preserve was peaceful, beautiful, and filled with all sorts of sightings. Not to mention is it was a beautiful weather day, and I have come to the conclusion that those in Florida do not realize how lucky they are!!!