Saturday, May 6, 2017

Saturday, May 6, 2017

Tonight's picture was taken in June of 2009. Mattie was at the art table in clinic and surrounded by his two buddies, Brandon and Jocelyn. These were Mattie's two closest friends when enduring cancer. As you can see they were both older than him. But in all reality Mattie did not relate to most of the other children his age. Brandon and Jocelyn were with Mattie until the end. In fact, Brandon (who was diagnosed with lymphoma around the same time as Mattie) came to the hospital on the day Mattie died and sat in his room with us, in what was an impromptu wake in the middle of Mattie's room (with over 20 hospital personnel). 


Quote of the day: Signs may be but the sympathies of nature with man. ~ Charlotte Brontë

Sunny this morning! Watching both of us from the stairs! The funny part about this is that Sunny's body is actually bigger than a step! So it truly was a funny and uncomfortable place for him to perch. 

Check out this sad face! This is Sunny before eating! Looks very pathetic, no? He is very good at manipulating both of us with his eyes!

This morning, Peter and I went down to the storage room in our complex. This is where we put our Walk posters, cups, corn hole boards and other items. We had two large cart full of items to carry up. However, even though it was raining, I would let anything inside before cleaning it off. The storage unit had water damage and stuff was all over our items. This was a very large chore today of transferring items, cleaning them and sorting through them. 

Peter did a stellar job of taking close to 4,000 cups out of the bins, stacking them and putting them into their appropriate boxes. Each color represents a walk team at our event. As each team member walks a lap, he/she earns a cup to place in our challenge wall. Each team gets a maximum of 240 cups, or in essence walk 60 miles. That may sound like a lot, but when you have a team of 18 people, it isn't a problem to race through 240 cups. 

Cups at Walk 2015 -- awaiting walkers! 

What the challenge wall looks like as it fills up with cups!

While Peter was dealing with cups, I went out to FedEx to laminate our cup signs (which go on the Cup Tally board you see here)! Typically I go to Staples to do this, but given the poor product I received last year, I decided to talk to FedEx. It turns out that FedEx has machines that you can use yourself to laminate items. I had a lovely woman train me on the machine and what I was so impressed with, was her care and attention to detail. She ran several test sheets through the machine first to make sure it was working well, was hot enough, and that the paper wouldn't come out all crinkled (which was how Staples completed the project last year). She was a peach and I did 18 sheets myself, they came out great, and I did not have to wait an hour or more. 

Sometimes I think we receive signs from nature just when we need them. I have been stressed out and down about the plans for this coming Walk, but low and behold while looking out Mattie's bedroom window..... I saw..... Make Way for Ducklings!

Mama and her 8 ducklings! Why this is so special to me is because about a decade or so ago, Mattie and I found a mother duck and her ducklings stranded outside our complex. Actually trapped down a sewer drain. We called animal control then and they came with their van and caged the ducks and brought the entire family back to the Potomac River. This whole scene made quite an impression on Mattie and we talked about this adventure for years! All sorts of stories about ducks enfolded between us. 

I feel this is a sign from Mattie today. He is telling me something! It stopped me in my tracks, but like a decade or so ago, I called animal control today. They are delightful and want to help. So I am awaiting for them to arrive and retrieve mom and her ducklings! I am hoping for a positive outcome like a decade ago. But it isn't easy to trap a mama duck. She can put up quite a fight from what I remember. 

Friday, May 5, 2017

Friday, May 5, 2017

Tonight's picture was taken in June of 2009. Mattie was in the clinic and playing with his good buddy, Jocelyn. Jocelyn had osteosarcoma as well but Mattie was 7 and Jocelyn was 25. Despite their age difference they connected, understood each other, and Jocelyn was an excellent role model for Mattie. I will never forget when Mattie had to have his first limb salvaging surgery. I could try to empathize with him but I did not have first hand knowledge like Jocelyn. Jocelyn had a sense of humor and as she was talking about her amputation with Mattie she showed him her prosthetic, but did it in a non-threatening almost funny way. She then explained all the things she could do with her leg and this made a real impression on Mattie. So in essence she normalized a very abnormal experience. It is hard to imagine that both Mattie and Jocelyn are dead. 

This photo shows us sitting around the clinic's art table with Jocelyn and Katie (one of Mattie's wonderful HEM/ONC nurses). If you look closely you will see Mattie created an alligator out of a big clip and the alligator was chomping on my index finger! I still have this alligator clip in our kitchen. 


Quote of the day: You must have chaos within you to give birth to a dancing star. ~ Friedrich Nietzsche

There are many aspects of the Walk that are challenging. One right off the bat is living in chaos. In order to prep materials for the Walk things have to come out of storage and therefore they are stacked everywhere. You can see what Mattie's room is turning into... a warehouse!

Raffle baskets everywhere! Hopefully with Peter's help, I will wrap them with cello and bows this weekend and then shuttle them off to our raffle chair!

In order to have a cup challenge wall, a lot goes into that production. Plastic colorful cups have to come out of storage. Each walk team gets 240 cups and we have 16 teams this year. So that is a lot of cups to keep track of. The purpose of the cups is a colorful way for teams to keep track of how many laps they walk around the track. With each lap, a team gets to place a colorful cup through a chain link fence. Since each team can earn up to 240 cups, that means that a team can walk 60 miles around the track. Some teams actually do this! 

Thursday, May 4, 2017

Thursday, May 4, 2017


Tonight's picture was taken in June of 2009. Mattie was visiting a friend of mine and in her backyard, she had a bubble machine going. Mattie LOVED his big fly swatters and from his chair was moving his arms and batting at the bubbles. I am sure if Mattie could have walked, he would have been chasing the bubbles instead. But Mattie was determined regardless of his physical mobility issues! 








Quote of the day: Tired, tired with nothing, tired with everything, tired with the world’s weight he had never chosen to bear. ~ F. Scott Fitzgerald


It was a whirlwind of a day! Thankfully Peter took Sunny to work with him today, because it was one thing after the other. Starting with meeting with our printer. The ABC Imaging company has been printing our poster boards for eight years now. They donate all the time, labor, and materials to us. Which I can't tell you what a gift that is because producing high quality posters can cost hundreds of dollar for EACH poster. 

How did I get connected to this printing company? Mattie naturally. The owner of ABC Imaging sat next to me every Tuesday in chapel at Mattie's school. She has an only child, who is one year younger than Mattie. So we had a lot in common. We did not know each other before chapel, and truly sat next to each other by happenstance one day. But since we attended weekly and always saw each other, we chose to sit next to each other for the remainder of the year. ABC Imaging has made our Walks look professional for years now and I am deeply grateful. Another gift Mattie left behind for me. 

In the afternoon, I picked up Peter and Sunny at work and ventured to Mattie's school to do a logistics check. Regardless of how well detailed I think I am, things always change that require me to alter our spreadsheets and program map. For example, this year, Clyde's isn't donating and cooking our food. So we have ventured into the world of food trucks. I am getting a fast lesson on this world. But half of our discussion today was where to stage these trucks. So that too changes the flow of our event. Thankfully our logistics chair is as detail oriented as me, which brings me peace of mind. 

Meanwhile, Sunny was such a great boy during our school walk through. We had him in tow the whole time and he wasn't tugging, pulling, or demanding attention. He literally just sat down near us with each place we walked to on the track. That's Sunny..... he has a sixth sense about him and somehow knew today was about business not fun.  

Wednesday, May 3, 2017

Wednesday, May 3, 2017


Tonight's picture was taken in June of 2009. Mattie was home recovering from his sternotomy. A friend of his bought him these funny straw glasses. The point of them was to get Mattie to use his lungs by sucking in and blowing. Something that his respiratory therapist wanted him to focus on post-surgery of his lungs. Mattie did not like using a spirometer, so instead, we tried to come up with clever and fun ways for Mattie to do his exercises. 








Quote of the day: I define connection as the energy that exists between people when they feel seen, heard, and valued; when they can give and receive without judgment; and when they derive sustenance and strength from the relationship. ~ Brené Brown


Many of our friends and volunteers are working hard toward Mattie Miracle's upcoming Walk. One friend recently sent out more solicitations to local restaurants and businesses to contribute to our raffle. Within minutes of an email being sent out yesterday, a business owner responded back. Her name is Adriana Sifakis. She is the owner of The Italian Place in Old Town Alexandria. Adriana grew up in Peabody, Massachusetts and is Italian. Like so many of us who are Italian and come to DC, we land up disappointed with the lack of authentic delis and restaurants that serve Italian cuisine. So Adriana's shop is trying to change this. The cute and quaint shop captures your attention, as does Adriana herself. She works there around the clock to make sure her business is a success. She opened the shop seven months ago, and while I was on line to place a sandwich order and pick up my gift certificate for the raffle, I over heard so many people talking about why they shop there and each one chatted with Adriana. She is that personable. 

When I got to the front of the counter, I placed a sandwich order and also asked to speak to Adriana. She came out to talk with me and when I said I was there to pick up a gift certificate, she knew exactly who I was before I introduced myself. She is a real people person. Needless to say we got to talking, she paid for my lunch (which was a delicious treat, and unexpected), and I learned that she is a trauma survivor too. We have different traumas, but yet related to each other. In fact, I did not have to tell her anything about Mattie Miracle or why our work is important. She just understood it, and in my book she is a business owner we want to bring into our fold. 

Adriana wrote a book called S.W.A.K. What does it stand for? You may want to guess. Well it stands for.... sealed with a kiss. It is a story about her life growing up with a very dysfunctional mother. In fact, how she survived through her formative years is amazing, and turned out so well put together, trusting of others, eager to share her story, and most of all wanting to help her community and those in it. She said I was remarkable, but so is she. I came home with a signed copy, personalized to me. Gifts all the way around and meeting Adriana was certainly the highlight of my day!

Synopsis of the Book:

“Every knock is a boost.” That is the motto of Ma, the unhinged and controlling matriarch of the Napolitano family. Ma stomps through life on her own terms, teaching what she considers life’s most valuable skills to her twin boys and sickly, sheltered daughter, Lauren. Ma’s peculiar ideas about love, survival, and parenting directly mold her children; her lessons include using whatever means necessary to get by (even if those means include theft, arson, harassment, and fraud), doing what it takes to even the score, the importance of blood ties, the solace of a stiff drink, and the cold and calculating art of revenge. S.W.A.K. is a coming-of-age story that follows Lauren as she struggles through a tangled and complex mother-daughter relationship to the creation of her own identity and worldview outside of Ma’s influence. Uncovering a treacherous secret is the ultimate test of Lauren’s resilience as she is faced with acknowledging a heart-wrenching fact or living in a dangerous world of denial. At her core, Lauren possesses her own treasure, as fiery and strong as her mother’s. Its brightness and vivacity radiates from the page as Lauren seeks to find the strength to build her own life in a future of possibility. In the tradition of The Glass Castle, the novel chronicles Lauren’s journey as she finds the courage to understand the dangers and limitations of her family, and move beyond the life she has been dealt— traveling out of the familiar dysfunction of her upbringing and into a new world of opportunity and love. S.W.A.K. is a luminous story of family and faith. At times quirky and frightening, this powerful novel demonstrates triumph over the worst kind of betrayal and reinforces that while you cannot choose where you come from, you can choose who you become.

Tuesday, May 2, 2017

Tuesday, May 2, 2017 -- Mattie died 398 weeks ago today. 

Tonight's picture was taken in June of 2009. Mattie was in the PICU, recovering from a sternotomy. You may not be able to see it, but Mattie had stitches up his mid-section from his belly button past the breast bone. Amazing that he was able to smile, don't you think. Another issue we dealt with was eating and drinking. Mattie became a shell of his former self and truly emaciated. You can clearly see that in this photo. Which is why when I hear people talking about the importance of nutrition during cancer care, I laugh. I laugh because when in the thick of it, you feed your child whatever he wants to eat. When Mattie wanted to eat anything it was an exciting moment and we made sure we got whatever he requested. 


Quote of the day: And I got out of there without punching anyone, kicking anyone, or breaking down in tears. Some days the small victories are all you achieve. ~  Molly Ringle


Tonight's quote actually made me laugh. It may not be as funny to you! But to me it was hysterical because it captures how I feel today. I am frustrated and stressed about the Walk and with each year, it doesn't get easier, it get more complex to manage this event's coordination. Trying to raise funds and get attendance makes me a magician at times. The only problem is I don't have a magic wand! 

In the midst of Walk season, it is also a busy time of year for most of my supporters and volunteers. Most if not all, have families and children in school. Throughout the year I am inundated with updates about children, their happenings, struggles, achievements and the like. For the most part I have learned over time that if I want to function in the real world, I have to be able to hear these stories and to converse about them. But there are times, like Walk season, when my patience is lower, I feel frazzled, and I am balancing a lot. It is at such moments, when I absorb certain complaints, issues, and family problems and want to scream. I don't want to scream because the content isn't justified or worth talking about, it is! I want to scream because while the rest of the world is dealing with raising their children, I am dealing with planning a cancer walk, that started because I lost my only child to cancer. So what do you call that..... bitter, misplaced anger.....? Not sure, but I call it my reality.

Monday, May 1, 2017

Monday, May 1, 2017

Tonight's picture was taken in June of 2009. We were at my friend Christine's backyard, and she hosted a birthday party for Mattie. Mattie's birthday was in April and he celebrated his 7th birthday in the hospital. When he home between treatments, Christine had a party with many of Mattie's friends. She had the company Reptiles Alive come to celebrate Mattie's birthday and they brought a boat load of creepy and crawling things with them. Right up Mattie's alley. As you can see he wasn't at all afraid of this snake. Unlike myself, who was on the opposite side, but zoomed in with my camera lens to take this photo! 


Quote of the day: Let me tell you the secret that has led me to my goals: my strength lies solely in my tenacity. ~ Louis Pasteur

I honestly don't know what is happening to our Nation's Capital. Over the course of the last 5 years, I have seen an enormous decline and to me it starts with graffiti. I CAN'T stand it. To me it is about the ugliest thing I have ever seen. I addressed these same three areas with the Department of Power and Works last spring. They actually cleaned it but as soon as things get cleaned, the vandalism happens weeks later. As a private citizen I would love to go out and clean it myself, but if I should I would be the one arrested. Today, I reported this once again, because I can't tolerate this. It upsets my mind and it detracts from our community. Perhaps society as a whole! Mind you this nonsense is right outside the State Department. Who does NOTHING about it! 

The next horror show is by the Kennedy Center. I would love to have a private surveillance camera capture these people who spread this garbage around on our walls. I imagine in some Countries like Singapore, such filth wouldn't be tolerated and there would be consequences. 

The third area is the wall behind the metal fence you see above the green signs. Sunny and I walk passed here every day, and I can't tolerate it. I spent thirty minutes inputting my requests on the DC graffiti removal website today because I reached my maximum. 


It was a busy day of work. The executive director of Momcology, a national organization comprised of parent advocates contacted me today and we had a lengthy and significant conversation. Momcology has 6,000 members and 150 new families join their support network weekly. 

Momcology was formed to help bridge the gap of loneliness any parent feels once their child is diagnosed with cancer. They offer on-line support groups and now are running evidence based groups at select hospitals. The executive director found out about Mattie Miracle and the standards from attending a conference and was told to reach out to us. Momcology wants to endorse the standards and I am happy that they also want to do some assessments of families to see if they are aware of the standards and better yet find out whether they received standard psychosocial care during the treatment process. Our hunch is that what families report and health care providers report are like night and day. Mattie Miracle has been looking for a meaningful way to access and assess families and partnering with Momcology will be a win win for both of us. In many ways it is humbling that organizations view Mattie Miracle as the advocacy leader of psychosocial care for children with cancer and their families. 



Meanwhile later today, the chaos only grew in Mattie's room as I was making placards for each of our raffle baskets. I have done this eight years in a row, so in many ways I have this down to a science. Nonetheless it takes time and effort. But the goal is to make things as enticing as possible in order to inspire Walk attendees to purchase raffle tickets. 

Sunday, April 30, 2017

Sunday, April 30, 2017

Tonight's picture was taken in July of 2008. About two weeks before Mattie was diagnosed with Osteosarcoma. Every July we would take Mattie to see the lotuses in bloom at the DC Aquatic Gardens. It is an absolutely incredible sight in the middle of the city. Notice that in Mattie's left hand he was holding a toy car. Mattie always had something in tow with us. It was a tell tale Mattie trait.


Quote of the day: It is the sun shining on the rain and the rain falling on the sunshine, and things pushing up and working under the earth. ~ Frances Hodgson Burnett

In comparison to the photo above, this is what things looked like at the Aquatic Gardens today. There wasn't even the sight of a lotus plant in the water. By July, this water will be filled with a field of lotuses. The stark contrast is remarkable. 

In several of the ponds in the Garden are beautiful water lily. Of all colors.... purple, white, and pink. But these yellow irises caught our attention. I was holding Sunny's leash and he was VERY excited to be sniffing and exploring. 

A Mattie favorite.... a turtle. 

A close up of the beautiful water lilies! You can see why Monet was intrigued by them, and painted them at all times of the day. 

Now this was a new one for me. We saw a deer while walking at the Gardens. Sunny was besides himself. If he was off leash (which we NEVER do), he would have chased that deer. Sunny was barking and wanted to pursue. We always see people walking their dogs off leash, but we know Sunny. Sunny chases anything that moves. So off leash would be a terrible plan.  

The two of us!

This was the chaos going on in Mattie's room this afternoon. I have been piling raffle items all over and today was the day to start staging baskets. That may sound easy, but it isn't. It takes me hours to stage the baskets, which means arranging all the items inside to make them look appealing. 

We have 10 baskets this year, and I was able to stage 8 out of the 10 today. To make the items fit well in their baskets, requires me to insert packing boxes inside the basket or bag to make things pop up better for displaying. The whole thing is a total labor and it doesn't end here. Next weekend, with Peter's help, I will cello wrap each raffle basket! 

To purchase raffles tickets, click on the word "Raffle."
Raffle


Here are the 8 I staged today, with a description of each. Enjoy!!!

A Caps enthusiast’s dream – a fabulous collection of Washington Capitals Hockey Team Gear and signed memorabilia! Get ready to cheer them on to victory in the 2017-2018 season with 2 great aisle seats only 6 rows behind the glass! (Section 115, Row F) at a home game! You are practically on the ice and at eye level to see all the action! This basket includes LOTS of Caps gear: Drawstring bag, slippers, umbrella, wallet, and a Caps storage cube.

Need a stylish bag for the beach, for everyday items, for storage, or for lunch...... then this is the perfect basket for you. Filled with 8 incredible and indestructible SCOUT bags. A bag for all occasions is awaiting you, and each bag is filled with vibrant colors, patterns, and has a unique shape. Bags include: 2 errand boy jumbo zip top totes, 2 picnic pleasure chest coolers, 1 gossip girl cosmetic bag, 1 lunch cooler, 1 pocket rocket multi-pocket zip top tote, and 1 spirit chillah.

A wine lover’s delight! Experience a beautiful collection of hard to find fine wines hand-picked by an expert Sommelier. The collection includes 12 unique bottles of wine to complement the seasons and events of each month. This basket also includes other complementary items to host the perfect gathering with friends, such as wine glasses, wine topper, silver bucket, and much more.

Enjoy an afternoon at Nationals Stadium – Sunday, July 30 – first pitch at 1:35pm – when the Nationals take on the Colorado Rockies. Game package includes 4 Diamond Level seats with parking and “all you can eat” in newly renovated Diamond Club and/or in-seat dining! Free Nats coloring book for kids 12 and under, for the first 10,000 fans. This basket includes LOTS of Nats gear: lanyard, pin, key chain, Ben Revere garden gnome, umbrella, wallet, fleece blanket, lunchbox, tech gloves, beach ball, draw string bag, slippers, and a Nats storage cube.

Experience a VIP Tour of Port City Brewing Company (the oldest packaging brewing company in the Washington, DC area) with 11 friends on a private tour at the award-winning craft brewery in Alexandria, VA. The grain-to-glass tour lasts about 30 minutes with one of Port City's knowledgeable and entertaining Beer Guides. The VIP Tour includes a full flight of beer to taste (six six-ounce samplers), as well as a taste of green beer out of the fermentation tanks.... you get to keep your tasting glass as a souvenir. This basket includes Stars and Stripes themed accessories such as 2 liberty themed beer glasses, patriot themed towels, beer opener, and much more.

Are you tired of cooking? Then this basket is for you. Dinner is Served! Enjoy all that our area has to offer with this variety of gift certificates to local restaurants. A perfect culinary collection of gourmet gastronomic delights, including: Del Ray Cafe, Season's 52, PF Chang's, Cheesecake Factory, The Great American Restaurant Group and much more!

Hottest ticket in town! One Lucky Winner will be able to turn all of those favorite t-shirt memories into a warm and cozy keepsake quilt! You will have the opportunity to consult with a master quilter who will then transform your ideas and materials into a masterpiece. You will simply be delighted with your personalized, one-of-a-kind quilt!

Ever wish that money would grow on trees? Well it does now – a tree with gift certificates including: $10 Bath & Body Works, $15 iTunes, $15 Zinga Frozen Yogurt, $20 Total Wine & More, $25 Amazon, $25 Starbucks, $25 Macy's, $25 Target, $25 Barnes & Noble, $25 TJMaxx (or Marshall's or HomeGoods), $50 Exxon Mobile, and $75 Giant Foods.