Saturday, June 9, 2018

Saturday, June 9, 2018

Tonight's picture was taken in July of 2005. This was Mattie's third trip to the Outer Banks of North Carolina. He was three years old and by that point had learned to appreciate the ocean and sand. Mattie had a very cautious side to him, so I really never had to worry that he was going to touch the stove, get into cleaning products, or jump into water. Peter took this photo of us around July 4th! Mattie had his red on in celebration of the occasion. 



Quote of the day: Take a long walk alone in the woods - leave the cellphone and music player at home. Your whole being will appreciate it. ~ Jonathan Lockwood Huie

This was our view this morning from our Residence Inn balcony in Raleigh. There was a lot to watch from my perch as there were many graduations taking place and we could see graduates and families hustling about. This is a photo of the Duke Energy Center for the Performing Arts and there was a lot of activity around it today. Including flower stands selling bouquets for graduates. 

Raleigh is actually very flat. You can see clouds and trees for as far as the eye can see. 

We got on the road at 11am to head for Kiawah Island in South Carolina. It was about a five hour drive from Raleigh, NC. As we were getting close to the South Carolina border, I kept seeing all sorts of advertisements for "South of the Border" things. I was thoroughly confused because the only thing south of the border that I am used to hearing about is Mexico. But South of the Border here, was referring to South of North Carolina..... which puts you into South Carolina. Do you just love the South of the Border sign with the sombrero water tower when we reached South Carolina? I thought it was adorable and they have a whole theme park geared for kids at this turn off.  

Meanwhile, I took this photo because I can't get over this..... this is what I-95 South looks like. I am used to I-95 North, which looks NOTHING like this. I-95 North is congested, filled with bumper to bumper traffic, unstable drivers, and lots of advertisements and signs. But I-95 is beautiful and what surrounds you is nature. It prepares you for the fact that you are leaving the stress and aggressiveness of the northeast. 

I would say we had a very rainy drive to South Carolina. But as we approached Kiawah Island, you could see all the inlets and tidal marshes. 

Then we entered Kiawah Island. Peter and I have heard about this Island for years from our friends. We finally decided to venture further than North Carolina and check it out. You have to be a resident or renter to get onto Kiawah Island. There is a guard gate that prevents visiting traffic from getting in. So it already sets up a dynamic of calmness, as we are not surrounded by a lot of people and my friends tell me it is such a safe and friendly island. 

I can't tell you what a wonderful sight this was to see... our living room with a view! After two days of traveling, it was worth it. Last year's Outer Banks experience was a nightmare. Our condo was a disaster and I spent more time cleaning and complaining to management about it. This year, it is a completely different. Right now as I am writing the blog on our balcony, this is what I am seeing......

A wonderful buck!















This is our view of the Atlantic from our living room. More photos tomorrow. Right now I am going to try to learn to unwind and relax. Neither of which I do well anymore since Mattie died. 

Friday, June 8, 2018

Friday, June 8, 2018

Tonight's picture was taken on June 4, 2008. Mattie was pictured with Charlotte, who he deemed his girlfriend and the person he was going to marry. We took the kids on a canal boat ride in Georgetown and I remember snapping this photo! The kids were so excited because they just completed their first year of elementary school together! As you can see, Mattie was having a good time. Charlotte is now 16 years old, which is hard for me to believe. Yesterday Charlotte and I were emailing back and forth with each other and I asked her if she remembering taking this photo and that moment in time. She said YES! Charlotte continues to be part of Mattie Miracle, and this is truly incredible to me since Charlotte was only five when she knew Mattie. Such a tender age and yet watching their friendship grow in good and bad times was a gift. 



Quote of the day: The best remedy for those who are afraid, lonely or unhappy is to go outside, somewhere where they can be quiet, alone with the heavens, nature and God. Because only then does one feel that all is as it should be. ~ Anne Frank

Peter and I drove to Raleigh, NC today. The hardest part about the drive was getting out of DC and through Richmond, VA. After Richmond, there was NO traffic and the roads were beautiful.... clean and green. This was our view coming into Raleigh. 

We are only staying in Raleigh for a night, on our way to Kiawah Island, SC. It was brilliant of Peter to break up this long 8 hour drive, and it gave us an opportunity to walk Raleigh. 

Believe it or not, we are staying at a Residence Inn and the Inn has balconies for many of the rooms. This is our view from our balcony. The building behind me is the Duke Energy Center, which apparently is where people go to see theatre. 

I LOVE this cute acorn in front of the Duke Energy Center. Mattie loved to collect acorns and to give them to special people. So I couldn't help but think of Mattie when I saw this sculpture. 

We took a walk to dinner and passed the conference center of Raleigh. I just loved the sentiment displayed on the center... Here comes the sun!

There was a high school graduation occurring at the conference center today! We were surrounded by high school kids and family members! A lot of excitement. But this sculpture in the background is of Sir Walter Raleigh, and it is a Raleigh icon! Acclaimed Italian-American sculptor Bruno Lucchesi created the 11-foot bronze likeness to celebrate the city’s dashing namesake. Sir Walter Raleigh was an English entrepreneur and adventurer who, back in the 16th century, helped finance what would become known as ‘the Lost Colony.’ However, Sir Walter  never set foot in North Carolina, where the "Lost Colony" was located. 

I had read about this historic diner in Raleigh called Poole's! Then one of Peter's colleagues mentioned it to him as well and said it was a must see. So this green hole in the wall is where we dined tonight. However, the restaurant is a misnomer because there is NO diner food served inside. In fact, I would say this restaurant is worthy of any foodie. The food is creative, not complicated, tasty, and simply excellent. The only draw back is the tight and loud interior. But I know that is hip now! Nonetheless, it is worth a visit as long as you go early or very late since they do not take reservations. 

This is the retro chic interior of Poole's! Poole's opened in 1945 and back then ONLY served pies. Sweet pies. However, over time they grew to be a luncheonette.... which explains why there are still horseshoe counters for diners. 

Peter and I got to the restaurant at 5:40pm and ALL the tables were taken. So we had to sit at the horseshoe counter to dine. It worked out just fine and it was less noisy where we were. Behind us on the walls were black boards. The black boards listed all the food being offered. There were NO paper menus. 

After dinner, we walked about 14 blocks around Raleigh. In comparison to DC, it is a small and manageable city! From our walk, we returned to the hotel and went to their rooftop deck. It was a glorious place to sit and begin to unwind. 

Tonight's view of the Duke Energy Center. It is lit up like a Christmas tree. It captures your attention and I am glad we had this opportunity to stop through Raleigh. 

Thursday, June 7, 2018

Thursday, June 7, 2018

Tonight's picture was taken in July of 2003. Mattie was a year old and it was his first trip to the Outer Banks of North Carolina. Despite being right on the Atlantic Ocean, Mattie preferred being indoors. He found the sea overwhelming and hated the feeling of the sand on his feet. Of course that changed by the second summer trip to the beach. What I love about this photo was Mattie was holding his favorite book, Goodnight Moon. I can't tell you how many times Peter and I read this book over the course of Mattie's life. We knew it so well at one point that we could recite it by heart! 


Quote of the day: We who lived in concentration camps can remember the men who walked through the huts comforting others, giving away their last piece of bread... They offer sufficient proof that everything can be taken from a man but one thing: to choose one's attitude in any given set of circumstances, to choose one's own way. ~  Viktor E. Frankl

Tonight's Walk photos highlight our "Faces" posters. Over the last two years, we have done two different Facebook campaigns. In which we invited families impacted by childhood cancer to share photos of their children with us. In our request, we were very specific with how the photos would be used... at our Walk and for awareness purposes. 

The first set of posters are our Forever Heroes. There are 70 of these posters, and each highlights the face and life of a child who died from the disease. When we did this campaign, I can't tell you how quickly we received 70 photos. Within a matter of hours, as families are very eager to have their children remembered.

The second set of posters are our Forever Families. These posters capture a photo of the entire family and the five words they use to describe how cancer changed their lives. This is what our "Forever Family" poster looked like. Our five words were: Childless, Isolation, Trauma, Psychosocial, and Advocacy.

We felt it was important to do this series, since family members are a vital part of the treatment team. In fact, it is families who manage the 24/7 psychosocial concerns that arise from medical treatment! Also, Mattie Miracle understands that regardless of outcome (survivorship or death) a child will always be a significant part of the family's life. 

These were some of our walkers as they passed the Forever Family posters. Typically as walkers make laps around the track, they do pause and read these posters. 

This is a photo of myself with my friend Margy, her husband Ken, and their friend, Patti. We stopped to take a photo with Alexandra's family poster. Alexandra lost her battle with medulloblastoma, but I wanted her mom to know we were thinking of her family. Literally after the Walk, I sent this photo to Alexandra's mom. 

Our Forever Heroes posters. This half arc around the track is filled with the beautiful faces of children who have died. It is a very sobering portion of the Walk. Anyone who thinks that the cure rate for childhood cancer is acceptable, hasn't spoke to the five families in the United States who lose a child DAILY to cancer. 

Our Forever Hero poster of Mattie.

These are our friends Gavin and Wendy, who lost their only child, Evan, to neuroblastoma. Gavin and Wendy run their own very successful childhood cancer foundation and we try to support each others initiatives.  

My friend Margy and her husband, Ken. They posed for a photo with Brendan. Margy and I know Brendan's dad, Neal. Neal lives in Canada and is a lovely individual and a passionate cancer advocate. We sent this photo to Neal to let him know we were thinking of him and we are keeping Brendan's memory alive. 

Wednesday, June 6, 2018

Wednesday, June 6, 2018

Tonight's picture was taken in June of 2003. Mattie was one year old. That weekend, we took him to Great Falls, and walked along the pathways. Mattie LOVED being outside and he especially loved traveling on Peter's back. In fact, it was the only mode of transportation he liked.... as he hated his car seat and stroller. 

Quote of the day: If ever there is tomorrow when we're not together...
there is something you must always remember. You are braver than you believe, stronger than you seem, and smarter than you think. But the most important thing is, even if we're apart... I'll always be with you. ~ A. A. Milne (Winnie-The-Pooh)

Believe it or not, there are still more Walk 2018 photos to highlight! Tonight's photos feature our crafts tent! There were two wonderful crafts at the event. One was to paint a ladybug on a garden stone and the other was to make a flower pot out of newspaper and plant sunflower seeds in this pot. 

These wonderful craft activities were organized by our friend, Debbie. Debbie has been in charge of kid activities at the Walk since 2009, before Mattie died. The young lady wearing the orange lanyard is Lexi. Lexi is a college student at Virginia Tech and volunteers her time at each Walk. 

This photo shows the children's ladybug stones drying! Many families claimed their ladybugs at the end of the event, but four of the bugs were left behind. Needless to say, I have three lovely ladybug stones in my garden and the fourth I gave to a friend who is coping with cancer.

The lady on the left is Liz. Liz is Lexi's mom. Both mom and daughter travel from Pennsylvania to attend and volunteer at our event. About a year ago, Lexi had to manage her own health crisis. I tried to support her and her family during that time, and in the process, we developed a friendship. So much so, that they choose to attend the Walk and support Mattie Miracle each year. 

This cutie is Bethie. Bethie and Mattie met in elementary school. In fact, Bethie's brother and Mattie were close kindergarten friends. Bethie and her entire family have attended our annual walks since the creation of the Foundation. Bethie's mom, Junko, is one of our volunteer coordinators at the Walk. 

I will never forget Junko's kindness. As she used to visit me often when Mattie was in the hospital. Unlike other visitors, she was really there to support me. She would bring me tasty treats, lunch, and frequently gave me a shoulder massage right in the middle of the hospital hallway. She made me feel special in the middle of that cancer nightmare, and I believe that feeling will be forever remembered.

Tuesday, June 5, 2018

Tuesday, June 5, 2018 -- Mattie died 455 weeks ago today.

Tonight's picture was taken in June of 2004. Mattie was two years old and as you can see he loved wearing his footed pajamas around our home. But you maybe asking  yourself.... what's with the yellow thing on Mattie's face? Well that yellow thing was a pair of plastic glasses that went on Mattie's toy, Mr. Potato Head. However, Mattie loved wearing the glasses himself! Well not only wearing them, but how about wearing them upside down! It was never boring with Mattie. 





Quote of the day: A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. ~ Christopher Reeve

On a good weather day, this is what Washington Harbor looks like. However, anyone living in Washington, DC knows that we haven't had a good spring AT ALL! It hasn't just rained a day or two, rather it feels like it has been raining for weeks and months.  

This is the sight Sunny and I saw this morning at the Harbor. Can you see the flood gates are up on the pier? I know there is a need for the gates, but I have never seen them really in action. Well that is until today!

The photo above was taken from  across the Potomac River. Whereas, in this photo Sunny and I were on the pier. Or what used to be the pier. It was completely impassable and under water. Without the flood gates all the businesses in the Harbor would have been destroyed. 

Meanwhile the debris floating passed us in the Potomac River today was impressive. Literally fallen trees were collecting along the banks of the River. 

Do you see this long tree trunk floating by?!

All the debris goes somewhere and the somewhere is a large pile and collection near the Kennedy Center. There was a police car parked by this crane today and the whole walking path was cordoned off. The ground is so saturated with water that even pathways are flooded. 

All the water, effected our usual walking route. Yet Sunny was not fazed, but instead was intrigued by the interesting smells along the way. The beauty of Sunny!

Monday, June 4, 2018

Monday, June 4, 2018

Tonight's picture was taken in June of 2008. This was a month before Mattie was diagnosed with cancer. That weekend there was an arts and crafts fair in Bethesda, MD. We took Mattie to the fair and met up with one of his preschool classmates. As you can see Mattie gravitated right to the paint tent and the flower pots. Mattie LOVED painting flower pots and I still have many Mattie flower pot creations in our garden today. 








Quote of the day: One day Alice came to a fork in the road
and saw a Cheshire cat in a tree. "Which road do I take?" she asked.
His responses was a question: "Where do you want to go?" "I don't know," Alice answered. "Then," said the cat, "it doesn't matter." ~ Lewis Carroll

I am sharing this photo with you tonight because I baked this banana bread today. I haven't made a bread in a long time. I used to make these treats VERY often when Mattie was alive, as he LOVED banana and pumpkin breads. But now I just don't make that effort.

Yet I had four over ripe bananas in my kitchen today and I did not want to toss them out. Instead, they got transformed into this. Yet, look at the LETTER on top of the bread, that seemed to form when the bread was cool. Anyone else see an M???? I of course take that as a Mattie sign!

Returning back to Walk photos.... tonight I am highlighting our caricaturist! This is Dylan. Dylan lives in Baltimore and I found him through GigMasters. The company I mentioned last night.

After I put my request on-line for a caricaturist, Dylan responded immediately and offered his service for the entire walk for FREE. 

Of course I could see samples of Dylan's work on-line before we hired him. Clearly you can see Dylan knows what he is doing and not only is he talented, but he can converse with his clients of ALL ages while drawing! 

I received many compliments about Dylan. But let me explain the type of professional he is..... when the event ended there were still a line of people who wanted a caricature. Dylan worked an extra 90 minutes and was around the entire time we were cleaning and packing up the event. 

Showing off some of his creations to the families under his tent!

Sunday, June 3, 2018

Sunday, June 3, 2018

Tonight's picture was taken in June of 2009. Mattie was in the hospital recovering from his lung surgery. Which was why he was dressed in a hospital gown. That day we took Mattie outside to get fresh air. As you can see taking Mattie from the unit was a production as we had two people with us in tow. But the second floor of the hospital was vital to us, as it had this outside courtyard area, which seemed like a national park after being cooped up in a hospital room for days. 


Quote of the day: Make your work to be in keeping with your purpose.
~ Leonardo da Vinci


For the past four years, Mattie Miracle has worked with a company called GigMasters! I actually found this company through a google search because I was looking for vendors to perform different services at our awareness Walk. Services like a DJ, kid shows, face painting, and caricatures. Without using GigMasters, I am literally navigating a space I know very little about. As I wouldn't know the quality or trustworthiness of the work! GigMasters takes that unknown off the table for me, as they vet their performers and vendors and I can read client feedback about the professionals hired.

Thanks to GigMasters, we have used the same DJ four years in a row. Sergio was our first success story for Mattie Miracle's Walk and from there we secured a face painter, a caricaturist, and our Reptiles Alive show. Using this on-line service is FREE and easy. Basically you put your request on-line for whatever service you are looking for, the dates and times, and in our case, I always explain that we are a non-profit (along with the nature of our event, and how we would love for vendors to share their services pro-bono) and within hours or days I receive email responses from GigMasters providers. In most cases, every vendor we have hired through GigMasters has worked for us for free. To me they are amazingly generous, supportive of our cause, and are competent, professional, and talented. 

When GigMasters recently sent me an email and asked if I would like them to write about our Annual Awareness Walk, I responded. I supplied them with some content and photos. Check out their blog posting about the Walk................


https://itg.gigmasters.com/thepartystartshere/real-event-mattie-miracle