Saturday, November 23, 2019

Saturday, November 23, 2019

Tonight's picture was taken in December of 2008. Mattie loved playing on the floor of his hospital room. Since I always questioned how clean the floors and room were, we would lay a sheet on the floor. The lady sitting next to Mattie is Tricia. Tricia was Mattie's favorite HEM/ONC nurse and as you can see, being on the floor did not stop Tricia from doing her job. She got right down there with Mattie and engaged him in conversation while accessing his central line where he received all his fluids and medications. 


Quote of the day: I should know enough about loss to realize that you never really stop missing someone-you just learn to live around the huge gaping hole of their absence. ~ Alyson Noel

For the most part, Peter and I do not attend funerals. After attending Mattie's, that was more than enough for us. 

When Mattie died, his favorite nurse Tricia told us she wouldn't be attending his funeral. Tricia feels similarly to us about funerals, most likely from experiencing the tragic losses of two siblings. Nonetheless, a few days before Mattie's funeral, she received a sign. A sign she perceived was from Mattie. So not only did she break her rule about not attending funerals, she came and also spoke at Mattie's celebration of life ceremony. When we found out that Tricia's husband, Mike, died unexpectedly on Tuesday, we knew we had to see Tricia and attend the funeral. Perhaps it is our close understanding for each other, as Tricia saw Peter and I at our absolute worst and helped us in ways that are too intangible to describe. We are comfortable with each other and trust each other. Which to me is a special gift. 

The wake and funeral were in La Plata, MD. Which took us about an hour each way. When we got there, we were greeted by men in uniform. They were US Capitol Police, as we learned that Mike was a long time mechanic for the Capitol Police. The police loved Mike and said he could FIX anything. They knew if he serviced a vehicle, it would be good to go! It was very moving to have the police participate in the service and they folded a huge American flag and handed it to Tricia. It was beyond moving. 

The room was covered in flowers from friends and family and Tricia did a beautiful job creating photo displays and a video. Even Mattie Miracle walk photos were featured. 

Though we have known Tricia for 11 years, this was the first time we met her siblings. Ironically we all felt like we knew each other and I am so happy I got to know this side of Tricia. We met her close friends as well and spent a great deal of time chatting with Tricia and her family after the ceremony. 

After the funeral, there was a celebration of life reception at the American Legion. I loved seeing the sign, but it truly is hard to believe that someone who was only 61 years old could die. Especially after hearing that Mike looked like the picture of health on Sunday. 

Friday, November 22, 2019

Friday, November 22, 2019

Tonight's picture was taken in November of 2003. Mattie was a year and a half old and was playing with one of his favorite puzzles. In fact, I would say that Mattie gravitated to puzzles and did not shy away from a challenge. Of course, he also loved the camaraderie of working   together to create something.


Quote of the day: Man’s greatest actions are performed in minor struggles. Life, misfortune, isolation, abandonment and poverty are battlefields which have their heroes - obscure heroes who are at times greater than illustrious heroes. ~ Victor Hugo


I sat down tonight and focused on our very full year! We have accomplished a great deal Foundation-wise and one thing we don't always do well is to acknowledge our work and accomplishments. As one of our board members tells me all the time..... there are corporations with a ton of money, that don't seem as productive at generating results as we do! I take this as a high compliment. 

This year alone, I have created FOUR videos for Mattie Miracle. Creating videos may sound easy and fun, but it is actually very labor intensive. It can take me hours to several days to develop a video, depending on the content that I am capturing. But I am big on photo documentation and to me one of the best ways to highlight an event is through a video. It's short, engaging, and conveys a message. 

It seems fitting to have these videos as this marks our 10th year of service to the childhood cancer community. Click on the photos below to see this year's videos!

10th Anniversary Video: Who we are and what we have accomplished

Mattie Miracle Walk 2019

10th Anniversary Party (November 7, 2019): Champagne and Oysters

Candy Drive 2019

Thursday, November 21, 2019

Thursday, November 21, 2019

Tonight's picture was taken in November of 2002. Mattie was 7 months old and Peter snapped this photo of us in front of our amazing oak tree. Ironically, we came to love that oak tree as Mattie grew older. When Mattie was a preschooler, every spring he'd collect tent moth caterpillars. He'd bring them home and we would jar them and wait for them to spin cocoons and eventually transform into moths. However, in caterpillar form, these fellows loved oak leaves. Daily we would go to our oak tree and pick a few leaves to share with the hungry caterpillars. The funny part about this is the only oak tree near us was the one outside our window and the ONLY leaves these caterpillars would eat were OAK!


Quote of the day: As someone who has lived the nightmare of losing a child, I know that the enormous hole left behind remains forever. ~ Arthur Honegger


It's been a very full November! As we had the 9th annual Candy Drive and Friends of the Foundation planned a Champagne and Oysters 10th anniversary celebration for Mattie Miracle. This was the very first fundraiser in our history to be planned by supporters, in which we were not involved. Except for the administrative portion. Which believe it or not, is quite labor intensive. All said and done, when I am finished, I probably will have written and sent over 90 thank you acknowledgment letters. 

The event was a $33,000 success. Planning and the expenses of holding such an event are noteworthy, and the generosity of our friends does not go unnoticed or unappreciated. To learn more about the event, I invite you to click on the photo of the flowers to see the highlight video from the event. In addition, below the video, is a link to our website that provides more event details.  

Learn more about the event @ https://www.mattiemiracle.com/news

Wednesday, November 20, 2019

Wednesday, November 20, 2019

Tonight's picture was taken in May of 2009, at the Mattie March. The Mattie March was an event that his support community hosted for him. Despite Mattie's depleted state and the pain he was in, he had a good day at the event. Pictured with Mattie was Tricia. Tricia was Mattie's favorite nurse, so much so that one day while in the hospital, Mattie screamed across the hospital unit for Tricia. She came running over thinking that he wasn't feeling well. When she arrived by his side, Mattie told her that the pressing issue was that he "loved" her. It was a priceless, genuine and tender moment. 


Quote of the day: There is nothing more painful than the untimely death of someone young and dear to the heart. The harrowing grief surges from a bottomless well of sorrow, drowning the mourner in a torrent of agonizing pain; an exquisite pain that continues to afflict the mourner with heartache and loneliness long after the deceased is buried and gone. ~ Jocelyn Murray


This morning, I was running around doing chores. At some point, I glanced at my cell phone and noticed I had a voice mail message. I did not recognize the phone number. As I proceeded to listen to the message, I couldn't place the name or the voice. Despite that fact, I could tell that this woman clearly knew me and wanted me to call her back because she had something important to tell me. 

When I called her back she told me that she was Patricia's mom. Since I know several Patricia's that did not narrow it down for me. However, as she kept on talking I realized the Patricia she was talking about was Tricia, Mattie's beloved nurse and our friend. I learned today that Tricia's husband unexpected died on Tuesday. I honestly was in shock, since I just saw him in May at our Mattie Miracle Walk. He looked like the picture of health! But I know all too well how fragile life is, as one can look and feel great one minute and the next minute be facing a health crisis. 

I am deeply sorry for Tricia's loss and wish I could help in some way. Tricia was and continues to be a supportive force in our lives and I value her as one of Mattie's memory keepers. I found some photos of Mike from past Mattie Miracle Walks and posted them below. Mike will be missed and I am saddened that Tricia and her children are facing this forever loss. 

Mike entered our Mattie Miracle Corn Hole Tournament every year. He was a good sport and believed in supporting a good cause. Mike was an excellent player and typically won 1st, 2nd, or 3rd place in the tournament each year. This photo was taken at this year's Walk. 

Mike was one of our winners in 2018. Tricia and her family have attended all TEN of our Walks. We know Tricia's three children, her mom, and her dogs!

Mike in 2017!

Tuesday, November 19, 2019

Tuesday, November 19, 2019 -- Mattie died 529 weeks ago today. 

Tonight's picture was taken on November 9, 2003. Mattie was a year and a half old and Peter captured a classic Mattie move! Mattie loved to rub cheeks and noses with me. 





Quote of the day: 70 percent of people experienced pain following the Shingrix vaccine, and almost half experienced some type of muscle pain or fatigue. About one in six people experienced side effects so severe that it actually prevented their normal activities. ~ Dr. Kathleen Dooling


Yesterday, Peter and I went to get our second dosage of the Shingrix vaccine. I really did not want to do it because I was so sick with the first vaccine in August. Yet, I know the vaccine is necessary and though painful, is better than contracting shingles. However, both of us woke up with a fever today and we have what appears to be flu-like symptoms. This doesn't surprise me in the least, since this is how I felt back in August. Nonetheless, it comes at a bad time, given that I am exhausted from the Candy Drive. Candy Drive + Shingrix doesn't equal a good result. 

I would have loved to stay in bed today and recover. But it did not happen. Sunny had an early morning grooming appointment (which is about 40 minutes away from home), which led to more chores, walking Sunny, and doing Foundation work. Thank goodness for Tylenol, otherwise I wouldn't be able to function at all as I continue to be running an 100.8 fever. 

A New Shingles Vaccine: Prepare for Harsher Side Effects:

https://health.usnews.com/health-care/patient-advice/articles/2018-06-15/a-new-shingles-vaccine-prepare-for-harsher-side-effects


Meanwhile, I am working on the Foundation's November newsletter. It is a heavy lift this month, since it involves creating a video of our Candy Drive, a video of our 10th anniversary party, and updating a list of our 2019 donors for our website. Creating such a list is a laborious process for me, but at the end of the day, here it is..................

https://www.mattiemiracle.com/donors

Monday, November 18, 2019

Monday, November 18, 2019

Tonight's picture was taken in November of 2003. Mattie was a year and a half old and as you can see he was fascinated by this squirrel who climbed onto our balcony. Since we are on the third floor, it is unusual to see a squirrel! Yet that day we got a visit and Mattie was transfixed and glued to the window. 

Quote of the day: There is no power for change greater than a community discovering what it cares about. ~ Margaret J. Wheatley


I am happy to say that Mattie Miracle's 9th Annual Post Halloween Candy Drive is over and was a huge success. We are deeply grateful to all of our candy contributors who are comprised of individuals, 38 schools, and 47 community groups and businesses.  

This year, 18,000 pounds of candy was donated to Mattie Miracle. Yes 9 tons!!! Thanks to our volunteers, this candy was inspected, sorted by type into Ziploc bags to preserve the candy for our recipients, and delivered throughout Washington, DC, Maryland, and Virginia.  The candy is intended to provide a sweet treat to family members caring for children with cancer. Specifically, a good portion of this candy is used to stock our two Mattie Miracle Snack and Item Carts. One Cart is located at MedStar Georgetown University Hospital in Washington, DC and the second Cart is at Children's Hospital at Sinai in Baltimore, MD.  

This Drive provides a year's worth of candy for our Carts. The Carts are pushed three times a week in the in-patient units of the Hospitals and offer free candy, nutritional snacks, drinks, and toiletry items to families. Families are deeply appreciative to receive these basic items because it is very difficult to leave their children's bedside to try to meet their daily needs.  

There were 18 Recipients of Mattie Miracle Candy this year:

Washington, DC
1.    MedStar Georgetown University Hospital 
2.    Ronald McDonald House
3.    HSC Pediatric Center 
4.    Children's National Medical Center
5.    Covenant House
6.    Sasha Bruce

Maryland
1.    Children’s Hospital at Sinai, Baltimore
2.    Hackerman Patz House, Baltimore 
3.    Ronald McDonald House, Baltimore 
4.    Children's Inn at NIH, Bethesda 
5.    Nourish Now, Rockville
6.    St. Ann's Center for Children, Youth, and Family, Hyattsville

Northern Virginia
1.    Ronald McDonald House, Falls Church  
2.    Special Love for Children with Cancer, Winchester
3.    Pediatric Specialists of Northern Virginia (PSV), Falls Church
4.    Embry Rucker Community Shelter, Reston
5.    Cornerstones, Reston

6.    United Community Ministries, Alexandria

Click on the Candy photo to see our Candy Drive 2019 video:

Video on Youtube:
https://www.youtube.com/watch?v=9qyd3WP3kek&feature=youtu.be

Sunday, November 17, 2019

Sunday, November 17, 2019

Tonight's picture was taken in November of 2003. Mattie was a year and a half old. As you can see Mattie loved exploring and checking things out. The sink, water, and sponges were fascinating to him. One thing I learned about Mattie was that it was important to keep his brain and hands busy! He loved mental stimulation but also needed me around to share in his experiences.

Quote of the day: It looked like the world was covered in a cobbler crust of brown sugar and cinnamon. ~ Sarah Addison Allen

Tonight's quote has me laughing. Mainly because Peter says I describe everything in the world around me in terms of food. Perhaps, as I love food. But notice tonight's quote! Apparently this author describes autumn in terms of a cobbler or pie! A lady after my own heart. 

This is a sunset over Washington Harbor. A sight I captured while walking Sunny. 

This afternoon, we took Sunny to Roosevelt Island. Sunny has been so patient with us for two weeks as the Candy Drive consumed our attention! I suggested a walk on the Island, as it is a Sunny favorite. Needless to say, we received many compliments about Sunny on our walk and a few people wanted to pet him. 

Check out what Sunny found while on the Island! Do you see the deer? He blended in very well with the trees, but this fellow wasn't alone. He had two other bucks with him. 

I had all the greatest of intentions to relax this weekend, but I am afraid it never happened. Mainly because there were many to do's piling up that I put on hold during the candy drive. Thanks to Sunny though, he forces me to stop working and to go on walks. Things I know I wouldn't be doing in 30 degree weather if it weren't for him.