Friday, May 6, 2016

Friday, May 6, 2016



Tonight's picture was taken on May 23, 2008. I will never forget this day or this adventure. Mainly because it wasn't planned, but just happened. It was a Friday and Peter got home early from work. It was a nice weather afternoon, and we decided to head to the Potomac River. While at National Harbor we bought tickets for a boat trip around town. While riding the boat, a fellow passenger offered to take our photo! Now whenever I see the "Matthew Hayes" (the name of the boat), I think of this moment in time.




Quote of the day: ...social advance depends quite as much upon an increase in moral sensibility as it does upon a sense of duty... ~ Jane Addams

We are now back in Washington, DC. It is really hard to believe what we attempt to accomplish in one week's time!!! Last night, after a full day at the conference, we went upstairs on the Hotel's rooftop to enjoy views of the Mississippi River and the sun setting into it!

We ate at the Majestic Restaurant last night! It was originally built in 1913 as the Majestic No. 1, a silent picture house that entertained Memphians for three decades, the restaurant gives diners a glimpse of the heady Hollywood days of ol’.  From the beautifully restored Beaux Arts décor to expertly prepared classic cocktails to warm, gracious service to Chef/Owner Patrick Reilly’s award wining, yet remarkably comfortable food, you find yourself feeling transported to another time. Add to that the largest private movie screen in the city showing silent films & classic movies and you’re center stage in an atmosphere that reclaims the cinematic glory of the dawn of the silver screen.

Inside the Majestic at Christmas Time. If you look at the far wall of the restaurant, you can see a movie screen, which still shows old movies to diners.

Orpheum was built in 1928 and is one of the few remaining "movie palaces" of the 1920's. The theatre presents a variety of events from Broadway shows and concerts to films. A $4.7 million renovation in the 1980's included refurbishing of ornamental plasterwork, crystal chandeliers and original furnishings plus remodeling of backstage and technical areas. It seats 2,400.

Believe it or not this is Main Street. Memphis is clearly in the process of being revitalized but in comparison to cities on the East or West Coasts, what immediately jumps out at you here is there is NO congestion. Either on the side walks or with vehicular traffic! 

Initially we wanted to see Graceland today. Not because we are Elvis fans, but because we wanted to learn more about his life and Americana during that time period. But because we had to fly home today, there just wasn't enough time. So instead, our waiter last night told us about the National Civil Rights Museum. Which was a 15-20 minute walk from our hotel. That is how we spent several hours today.

Attached to the museum is the Lorraine Motel. The significance of this Motel is this was where Martin Luther King, Jr was on the night he was assassinated. It is like walking and observing land that time forgot. Things seem so well preserved, and it is real shrine to Dr. King. That is a feeling that is evoked outside the doors of the Motel.

Dr. King was shot on April 4th. The same date as Mattie's birthday. 

A wreath still exists outside the room where Dr. King was lodging at the Lorraine Motel. 

The first hotel on the site was the 16-room Windsorlorrine Hotel, built on the northern side of the complex around 1925; it was renamed the Marquette Hotel. Walter Bailey purchased it in 1945 and renamed it for his wife Loree and the song "Sweet Lorraine." During the segregation era, he operated an upscale accommodation that catered to a black clientele. Bailey added a second floor, a swimming pool, and drive-up access for more rooms on the south side of the complex. He changed the name from Lorraine Hotel to Lorraine Motel. Among its guests through the 1960s were musicians going to Stax Records, including Ray Charles, Lionel Hampton, Aretha Franklin, Ethel Waters, Otis Redding, the Staple Singers and Wilson Pickett.

Following the assassination of King, Bailey withdrew Room 306 (where King died) and the adjoining room 307 from use, maintaining them as a memorial to the activist leader. Bailey's wife Loree suffered a stroke hours after the assassination, and died five days later. Bailey reduced the operation by converting the other motel rooms to single room occupancy for low-income residential use.

The museum was very moving and disturbing at the same time. It is an extensive collection that isn't confined to one floor or even one building. One would need at least three hours to do this Museum justice. Here is a link to the museum to learn more: http://civilrightsmuseum.org/

Thursday, May 5, 2016

Thursday, May 5, 2016

Tonight's picture was taken on May 19, 2008. Peter and I both came into Mattie's class that day to give the children a lesson on coconuts. Where they grow, what their materials (husk, water, and fruit) are used for and then the special treat was they got to watch Peter open up a coconut that his parents sent Mattie from Florida (right off the tree). If you have never seen such a sight, it is something, because the husk of a coconut is very fibrous and impossible to remove for most of us. Of course on the islands they seem to throw the coconut onto a stake and are able to rip it apart that way. But for the rest of us, we need power tools. The kids got to go outside and watch a drill being inserted into the coconut and of course witness how difficult a task this was. Then after the excitement was over they came back to the classroom got to taste the real coconut meat and also experienced coconut bread, which I baked. It was quite a visit to the classroom for us. 


Quote of the day: Generosity is not giving me that which I need that you do, but it is giving me that which you need more that I do. ~ Kahlil Gibran

 Today we attended the APHOES/AECMN conference held on the huge St. Jude Children's Research Hospital campus. I definitely mean HUGE!!! It is a compound literally and surrounded by gates. You can't get onto it without going through a guard gate. It is like no hospital campus I have ever been to! Well perhaps it is on par with going to the National Institutes of Health campus. Same sort of expanse and acreage!!!

What is very apparent by touring St. Jude is it is a LARGE business. They may do innovative research but the fundraising and marketing are both impressive. I can assure you that while on campus, we heard about three different stories regarding the origins of St. Jude. Which was started by Danny Thomas. However, what I am getting at is the STORIES aren't the same. I will leave it at that!

However, the hospital is about RESEARCH and in my perspective psychosocial services are not given the same priority... as their location in the hospital speaks volumes (these services are in the basement). I don't know why I was under the impression that the Hospital had a large number of hospital beds. WRONG. They have 72 beds and most of the treatment is outpatient. Putting this into context, Mattie's hospital (Georgetown) has about 48 inpatient rooms in all three pediatric units. 

I was thrilled to see the psychosocial standards of care being cited in conference presentations today!

Along the line, we also took about a 40 minute hospital tour today.  Interesting enough they start you off at this pavilion which is like a museum! With the history and accolades of the Hospital. Unlike other hospitals, St. Jude is filled with promotional photos of children who have been treated there. Whereas some of the photos are of the children alone and others are children posing with celebrities. I am sure people may feel all sorts of things when seeing these photos. For me, it was a marketing tool ALL over the hospital hallways and in my perspective this is not what I would want to see in a treatment facility I would take Mattie to. 

This ABC of cancer wall was created by Child Life at the Hospital. 

There were about 150 in attendance at the conference, and after receiving the Association's Bridge Award, we received a standing ovation. 

 The Actual Award

The famous St. Jude building you see in all the promotional photos. The campus is a fleshy pink tone. Every building has this color. 

A Sculpture featuring the genomic project, which is an scientific research project being funded by St. Jude. Basically trying to understand the science and genetic makeup of pediatric cancer to eventually target treatments to them using less toxic methods. 

 The Award's committee did a beautiful visual presentation highlighting Mattie Miracle. It was so touching we asked Nicole if she would record herself doing it again and sending it to us. We weren't prepared for it, otherwise we would have recorded it! 

Peter and I with Debbie Guigliano! The other award winner for achievement! We met Debbie in 2014, when we did a presentation at the APHOES conference. Since then we continue to be in touch with her and several other APHOES board members. These are very special ladies, two of whom contributed to the writing of the school article in the Psychosocial Standards of Care publication. 

Us with the entire board! We interact with many professional associations, but we became friends with many of these members! 

Us with Mary Kay Irwin. Mary Kay is the Chairman of APHOES and an outstanding researcher and clinician. It was Mary Kay who first reached out to us in 2014 and invited us to keynote her conference. We have been connected ever since and she reached out to use recently to ask if we wanted APHOES to endorse the Standards. Of course we said yes. We value this partnership!

Wednesday, May 4, 2016

Wednesday, May 4, 2016

Tonight's picture was taken on May 21, 2008. This was classic Mattie! Every spring Mattie would bring home tent moth caterpillars from his school's playground. The first time Mattie did this, he was in preschool. But the tradition continued for years. SO much so that I had the jars to keep them in, and we had a whole strategy on how to feed and clean their jars. You wouldn't think that caterpillars could be messy, but they are. They eat and eat, but also have output!!! When Mattie first brought these loves home, I honestly did not know what they ate. I suppose I could have googled it, but we did trial and error. We tried all the leaves around our home. They didn't like them! The only leaves they would eat were oak leaves. Thankfully we have one large oak tree near our home, and literally we had to stuff leaves into the jar every other day because they would get consumed. After about two weeks of eating, they then would spin a cocoon and about five days later would emerge as a moth. We had many moth releasing parties on our deck!


Quote of the day: For it is in giving that we receive. ~ Francis of Assisi

This morning we flew to Memphis, TN. My first time visiting Blues City. This is what things looked like from the air. We left a grey, overcast, and depressing day in DC (of which we are almost going on a straight week of that) and landed to sunshine! 

We are attending the Association of Pediatric Hematology/Oncology Educational Specialists (APHOES) Conference (http://www.aphoes.wildapricot.org/page-1860748). We were invited to APHOES' conference in Columbus, OH in May of 2014. They asked us to be their keynote speakers. From that moment on, we have remained connected with this group. They are a wonderful, warm, dynamic, and innovative group of professionals who contributed to the school standard in our psychosocial standards of care. It is very touching that two years later, they would invite us back to their conference and grant us the Bridge Award. 

Here is a description of the award.........................................

The APHOES Bridge Award recognizes the contributions of an individual or group whose work reflects the mission of APHOES: bridging the gap between hospital and school for children with cancer and blood disorders.

APHOES supports and honors the commitment and expertise of those who have had an impact upon the educational outcomes of Pediatric Hematology/Oncology patients. The APHOES Bridge Award will be awarded annually, with the inaugural award presented at the 2014 conference.

Individuals and groups outside of APHOES perform a wide range of critical roles that enhances the ongoing work of APHOES.  They may advise, advocate, legislate, fund, discover, invent, and promote, in support of the goals of our organization.  This award is intended to honor the special accomplishments of individuals or groups whose efforts provide a benefit to APHOES, its members, or the children, families, and schools we serve.

I snapped this photo of Peter at the Memphis Airport. There was this musical display which in my mind deserved to be photographed!

After checking into the hotel, we asked for input as to where to have lunch. They encouraged us to walk (about three or four blocks) to Beale Street, which is like New Orlean's Bourbon Street. 

Peter snapped several photos of what we were seeing. What the photos can't capture though are the sounds. There is live BLUES music playing everywhere. Literally from our hotel room, I can hear a saxophonist! But it is everywhere, in the restaurants and on the streets. 

The architecture of Beale
Street is interesting, but it is hard to know what to look at first. The structures or the people. We ran into groups upon groups just wandering the streets drinking beer, on a Wednesday at 2pm. 

This is a close up of the photo above. The sign above this restaurant was hysterical: Pig --- Pork with Attitude!!!

The restaurant we ate at was Blues City and literally their tag line is "put a little south in your mouth." 

Beale Street is filled with bars and music. It reminds me of a blend between New Orleans and Las Vegas, if that is possible. 

 More of Beale Street!

 Final photo! 

Tuesday, May 3, 2016

Tuesday, May 3, 2016 -- Mattie died 346 weeks ago today. 

Tonight's picture was taken on May 23, 2007. This was Mattie's first day of summer camp at his preschool! As you can see he was all set and excited to go. Mattie loved his preschool and summer camp. It was only a three hour program, but it was there that Mattie made some significant friends. The irony is SO DID I! Most of the moms whose children were in Mattie's classroom are still connected to me today. Most of them are involved in the Walk and helping us raise funds for the Foundation. In my perspective that is due to the connections their children had to Mattie and that tender time in our lives in which we developed these friendships. 


Quote of the day: Most people think that Americans are generous because we are rich. The truth is that we are rich, in significant part, because we are generous. ~ Claire Gaudiani

Why am I posting a photo of a dog and horse tonight? Well Peter and I are trying to get the attention of supporters on social media. In the past I have posted pictures about our Walk, but we notice including an animal in each ad seems to catch people's attention.

Yesterday I posted on Facebook and Instagram this photo, inviting people to come to the Walk and enter our corn hole tournament (mind you the dog is holding a bean bag used in corn hole). These photos are being liked on Instagram. A social media platform I am NOT wild about, but teenagers and young adults LOVE IT!

This morning I posted this photo on social media..... yes a horse admiring a raffle item! I used this to tell people, "COME TROT" on over and check out our on-line raffle. Before I sent out the photo, we had 241 raffle tickets sold. After the ad, we sold another 45 tickets. So that gives me some feeling for whether people are viewing our postings!

It was another busy day getting ready for the Walk and yet on top of that we are flying to Memphis, TN tomorrow to attend a conference. NOT to speak at it, but to receive a National Award on Thursday! So the next time you hear from me, I will be in Memphis. 

Monday, May 2, 2016

Monday, May 2, 2016

Tonight's picture was taken in April of 2008. Mattie was learning to play soccer and had practices during the week and games on Saturdays. I am not sure soccer was really Mattie's thing but he wanted to go and enjoyed the camaraderie  and being outside. While Mattie was practicing, I was ALWAYS there observing. Usually grading papers at the same time and sitting in a blue fold-able sports chair. A chair he insisted Peter buy for me when they went shopping together.  


Quote of the day: Sometimes people don't want to look back because they are afraid of facing the truth. But sometimes, facing the truth we're afraid of is what makes us who we're really supposed to be. ~ Nancy J. Cavanaugh

I ran many chores today. For me it is like to beat the clock. Trying to get everything done for the Walk on May 15th. In the midst of running around, I donated two items which have been in my trunk for over a decade. Mattie's stroller and the soccer game chair I mentioned above. 

Clearly I know Mattie died and I won't be using these things, but a part of me just couldn't get rid of these items. To some extent tangible items become imperative to keep memories alive. Also on some ridiculous level I thought Mattie may need these things and therefore it was important I hold onto them. I really believe my mind plays tricks on me because I rationally know Mattie died and isn't coming back, and yet on another level he is ever present. 

So to me donating these items was an end of an era. Yet there are things of Mattie's still in my car, such as his rubber lizards and beautiful beaded flower he made me which hangs on my rear view mirror. These will always remain with my car. 

Sunday, May 1, 2016

Sunday, May 1, 2016


Tonight's picture was taken in May of 2004. Mattie, he was never far from me. If I was in the kitchen, he wanted to be right there with me. Sometimes I would sit him on the kitchen counter while I was working there. As you can see, Peter snapped a photo of Mattie and me in the kitchen. The irony was, look who Mattie was looking at?! Not the camera, but at me. This was not an unusual occurrence for Mattie. When he was a baby and toddler, he was pretty transfixed on me. Certainly it evolved as he entered school, but it was something I will never forget. 



Quote of the day: It takes two flints to make a fire. ~  Louisa May Alcott

Peter and I worked the entire day of Foundation Walk Posters. One could ask how that could be possible? But all I can say is.... IT IS! We have over 75 posters on display at the Walk and each year we add to this visual display. Though a majority of supporters come to the Walk to socialize, walk, and have a good time, we do feel it is important to insert awareness content into the venue.

We include a whole poster gallery at the Walk. These are some photos taken of the gallery at last year's Walk. Within this location are posters about the Foundation, highlights of the work we do, childhood cancer facts and visual displays of our activities and accomplishments. 

Thanks to ABC Imaging (http://info.abcimaging.com/index), we are able to print out ALL our poster needs for FREE. This is a HUGE savings for the Foundation. How does this happen? The co-owner of the company, Luda, is a mom at Mattie's school. I met her when Mattie was in kindergarten. She too has an only child and would attend the school's weekly chapels. Luda was my chapel mate. We sat next to each other every week. Mind you NOT many parents came to chapel, but Luda and I were motivated to see our boys. So in the midst of doing this, we became friends. When Mattie developed cancer, she was asked to create posters for the Walk our care community hosted for us in 2009. After Mattie died, Luda continues to offer her professional services free of charge, and I can't tell you how many posters she has made for us over the years! 

Pictured in this photo is our friend Peggy. Peggy continues to be Mattie Miracle's top fundraiser. This year alone, she has almost brought in $3,000 and she is still going strong! 

Our photographer, Herman, captured Peggy checking out our poster gallery last year. It gives you a feeling for ALL the posters and their high quality.