Monday, May 9, 2016

Monday, May 9, 2016

Tonight's picture was taken in May of 2008, two months before Mattie was diagnosed with cancer. We took Mattie to Calvert Cliffs Park in Maryland. This was a special place to us because you have to walk over a mile, through a beautiful nature trail to get to the beach. The beach itself wasn't thrilling, but what caught Mattie's attention was digging for fossilized sharks teeth. Mattie could dig for HOURS with Peter and they never left empty handed. I still have Mattie's bag of sharks teeth in the kitchen, right where he left it. 


Quote of the day: There are always flowers for those who want to see them. ~ Henri Matisse

Today I went to Mattie's school and did my third and final art session for Donna's kindergarten class. It is hard to believe I have done this for six years now! EVERY year. Yet each year I learn something knew from the children. 

I haven't seen the children for two weeks, as I had to take a hiatus last week to go to a conference. But today we seemed to have picked up right where I left them. They were able to recall information about Picasso and Matisse and what I find fascinating is they remember the stories I told them about the personality styles of the artists. In fact, I would say they found that information intriguing! 

Now that they were familiar with Picasso and Matisse, today's session focused upon the rivalry and friendship that developed between the artists. As Picasso always said.... no one looked at Matisse's painting more closely than him, and no one looked as his own art more closely than Matisse. There was deep competition and jealousy between them, and yet these emotions are what probably pushed them to their greatness. Picasso was known for his drawing and use of geometric shapes, while Matisse was known for his bold colors. Yet over time, after studying each other's material long enough, they started to blend the two styles together (shape and color). In addition to this, they always painted similar subject matter and this was intention. As if one saw the subject matter and thought.... I can paint it better than you!

Here is a sample slide from my presentation that I showed the children. The painting on the left was done by Picasso and the painting on the right (done a year later) was created by Matisse. Notice the same subject matter and in some cases the titles of their masterpieces are practically the same. Of course there is no mistaking whose painting is whose, yet look at the vibrant colors Picasso incorporated into this painting and as for Matisse, look at the shapes and strong lines he brought into his work. By adopting and incorporating each other's style within their paintings, the finished product became very noteworthy.  

Below is a short video clip I showed the children today. I feel it gives a nice overview of the rivalry between the artists. 

A short CNN clip on Picasso and Matisse exhibit from 2003:

http://www.youtube.com/watch?v=aOi2s1tuEr4&feature=results_main&playnext=1&list=PL9AEA8A82B409ECC6

After I shared my slide presentation for about 30-40 minutes, I then had an art exercise for the children. They learned about still life today and they had me laughing because I asked them what a still life was. The response was.... when you stay very still. 

Any case, they learned that flowers and fruit for example are considered a still life. I set up this still life display and then using their imagination and the information they learned about Matisse and Picasso, they were asked to paint and create on their own canvas. 

It is hard to believe that these children are 5! To me they did a stellar job, and in true art fashion, no two paintings looked alike.

The children wanted to sketch on their canvas first before painting. That was a NEW one for me, no other class asked to do this. But the outcomes were delightful. This child clearly is influenced by Matisse, as you can see her bold use of colors. 

This fellow worked very hard on this creation and it basically mimics what I set up!

Love the colors! Now I did not have a basket of fruit on display, but she painted from her imagination, which Picasso would have appreciated. 

A more abstract depiction of the still life before her, and yet it is very intriguing and beautiful. 

This fellow was the last one done. He gave a great deal of thought and attention to the fruit and details he saw on the tablecloth!

Once the session was over, I left them with the snack I prepared. I always bring them chopped up fresh fruit with dipping sauces during this session. I figure if they painted a still life, they might as well eat it! 

The children all said their good-byes to me today. Donna took a photo of me with the children and several hugged me and told me how much they enjoyed my visits! 

Sunday, May 8, 2016

Sunday, May 8, 2016


Tonight's picture was taken in May of 2007. Peter took us out to one of Mattie's favorite restaurants to celebrate Mother's Day. What I love about this photo, was Mattie's expression! Peter captured him as he was trying to motion how much he LOVED me. To me this is a priceless photo and one of my favorite Mother's Day memories. 








Quote of the day: Maybe you are the instrument who is left behind to perpetuate the life that was lost and appreciate the time you had with it. ~ Erma Bombeck

It was another BUSY day for Peter and I as we are coming down to the line with the Foundation's Walk! In the midst of running around and doing chores today, Peter took on his annual tradition. Cleaning and setting up Mattie's fountains for me. In July of 2008, right before Mattie was diagnosed with cancer, he convinced Peter to design and create garden fountains for me. Literally Peter and Mattie worked on these fountains for weeks on our deck! They were trying to surprise me, so I agreed not to peek until they were unveiled. Mattie was deeply proud of this gift idea and their accomplishment together. It is hard to believe that he is gone, but his clever gifts remain. 

In honor of Mattie and our bond together, Peter sets up these fountains for me every Mother's Day! It is the best gift!

Here is a photo of the first fountain!

This was the second fountain they created together, which was a complicated project. However in each fountain I have on display Mattie shells and rocks that he collected!










I leave you tonight with a wonderful column that Erma Bombeck wrote in 1995 about grieving moms. Thank you Denise for sending it to me years ago. I STILL LOVE it!


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Mothers Who Have Lost a Child - May 14, 1995 by Erma Bombeck

If you're looking for an answer this Mother's day on why God reclaimed your child, I don't know. I only know that thousands of mothers out there today desperately need an answer as to why they were permitted to go through the elation of carrying a child and then lose it to miscarriage, accident, violence, disease or drugs. 

Motherhood isn't just a series of contractions, it's a state of mind. From the moment we know life is inside us, we feel a responsibility to protect and defend that human being. It's a promise we can't keep. We beat ourselves to death over that pledge. "If I hadn't worked through the eighth month." "If I had taken him to the doctor when he had a fever." "If I hadn't let him use the car that night." "If I hadn't been so naive. I'd have noticed he was on drugs." 

The longer I live, the more convinced I become that surviving changes us. After the bitterness, the anger, the guilt, and the despair are tempered by time, we look at life differently.

While I was writing my book, I want to Grow Hair, I Want to Grow Up, I Want to Go to Boise, I talked with mothers who had lost a child to cancer. Every single one said death gave their lives new meaning and purpose. And who do you think prepared them for the rough, lonely road they had to travel? Their dying child. They pointed their mothers toward the future and told them to keep going. The children had already accepted what their mothers were fighting to reflect.

The children in the bombed-out nursery in Oklahoma City have touched more lives than they will ever know. Workers who had probably given their kids a mechanical pat on the head without thinking that morning are making calls home during the day to their children to say, "I love you."

This may seem like a strange Mother's Day column on a day when joy and life abound for the millions of mothers throughout the country. But it's also a day of appreciation and respect. I can think of no mothers who deserve it more than those who had to give a child back.

In the face of adversity, we are not permitted to ask, "why me?" You can ask, but you won't get an answer. Maybe you are the instrument who is left behind to perpetuate the life that was lost and appreciate the time you had with it. 

The late Gilda Radner summed it up well: "I wanted a perfect ending. Now I've learned the hard way that some poems don't rhyme and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what is going to happen next. Delicious ambiguity."
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Saturday, May 7, 2016

Saturday, May 7, 2016

Tonight's picture was taken in May of 2009. Mattie wanted to go for a walk, but did not want to go in his wheelchair. So instead, I helped him into his wagon and out we went. Mattie was very cognizant of looking different and it bothered him that he couldn't walk or run like his friends. Thankfully, Linda, Mattie Child Life Specialist, gave him this wagon as a gift. It came in super handy! We still have this wagon, and whenever we use it, we think of Mattie. 


Quote of the day: Fatigue is the best pillow. ~ Benjamin Franklin

Benjamin Franklin may have been onto something, because with the exhaustion that I feel, when I hit the pillow I immediately fall asleep. Since Mattie died I have major issues with sleep. Except during Walk season. I am so busy from morning until after midnight, that by the time I am ready for bed, I am out!

While we were working on signage for the Walk, the Girl Scouts at Mattie's school were refocused on the corn hole boards. A continuation of last weekend's corn hole production. Today's goal was to paint and design the corn hole boards. 

One of the Girl Scout leaders sent us several photos of the painting process.

The girls involved with painting today!

The final product! Of course times this photo by 6, since there are six boards in total. 

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.