Saturday, November 7, 2020

Saturday, November 7, 2020

Tonight's picture was taken in November of 2007. Like many other weekends, we took Mattie for a walk on Roosevelt Island. As you can see, I was holding a big leaf in my hand. Clearly something Mattie found along our journey and wanted to bring back home with us. The pile we had outside our deck of the found pieces of nature was enormous! 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• number of people diagnosed with the virus: 9,816,076
• number of people who died from the virus: 236,789

I took this photo of our neighbor's house today! They always decorate their house for the season! They just took down their Halloween display and today, the Turkey came out! Of course the banner is new for 2020..... as it reflects our new way of communicating with each other thanks to our COVID lockdowns. 

In October of 2019, a filming crew came to our home to interview us about our psychosocial work with childhood cancer. It turns out that the producer completed the video (which highlights many other families and professionals) and is premiering it tonight by invitation only. So we will be tuned in from 7-9pm. Naturally I am hoping it captures the essence of our message and work. 

The flyer about the premiere. I did visit the production's website, and it is still under construction:

https://www.thepromisedoc.com/

Friday, November 6, 2020

 Friday, November 6, 2020

Tonight's picture was taken on Halloween of 2008. Mattie celebrated the day twice. Once at the hospital and the second time, walking around Alexandria, VA with his preschool buddy, Zachary. Sitting next to Mattie is Sally, the story lady. Sally was a class act. She knew how to bring a story to life and she excelled at finding ways for children and their family members to get involved in acting out the story. By our involvement, we were transported for just a little while from living life with cancer. On Halloween, as you can see Sally came dressed up and entertained the children. Mattie LOVED Sally, and that was high praise, because he did not relate to all the volunteers!  

Quote of the day: Today's coronavirus update from Johns Hopkins.

• number of people diagnosed with the virus: 9,685,815
• number of people who died from the virus: 235,601

This fellow is Tim! He works at Mattie's lower school campus. He is our fantastic candy helper on the campus and makes a hard job much easier for us. Every year, Mattie's school contributes candy to our Post Halloween Drive. Of course this year with COVID, our Candy Drive doesn't look the same. Yet supporters are still donating! They understand that candy must be in its original sealed vacuum packed bag. 

This morning, Peter met up with Tim. Tim collected all the candy that was donated at the Elementary School and consolidated it into a bin and boxes for us. Instead of us running around the different buildings at school, Tim does the leg work for us. A real God sent, and drives his cart up to our car! We need to clone people like Tim! 

It was a beautiful day in Washington, DC! Sunny absolutely enjoyed his walk on the Island. Deer were every where! Can you see mom and baby? 
 

Thursday, November 5, 2020

Thursday, November 5, 2020

Tonight's picture was taken in October of 2008. Mattie was three months into treatment. That day, his wonderful art teacher, Debbie, came over to do some creative projects with Mattie. Mattie LOVED Debbie. In fact, they related to each other beautifully when Mattie was in kindergarten. In Mattie's school, parents received interim reports about their child each year. I will never forget reading Debbie's commentary on Mattie. Keep in mind that Debbie did not see Mattie every day. Only when he had art class. Yet Debbie sized people up quickly and well and wrote in Mattie's commentary that he "is a special boy, and an old soul." With Debbie, Mattie painted "Mr. Sun." Mr. Sun became the inspiration for Mattie Miracle's logo!

This is Mr. Sun! It is a large painting that hangs in our dining room!

Mattie Miracle's Logo! Featuring the Sun, which was a symbol Mattie drew in most of his art creations. The Mattie Miracle sun has 7 rays, one representing each of Mattie's years on earth. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• number of people diagnosed with the virus: 9,544,315
• number of people who died from the virus: 234,300

This little fellow is Grayson. Grayson is the grandson of my "dear" friend, Margaret. Margaret was Mattie's preschool teacher. However, within Mattie's first semester of school, Margaret and I became friends. When Mattie died, Margaret got involved with Mattie Miracle. In fact, she is the person responsible for us securing our first corporate sponsor. Margaret died in 2014 from ALS. However, her daughter Ali picked up where Margaret left off. Ali is very involved in Mattie Miracle events, as are her three beautiful children. 

Ali graciously hosts our Mattie Miracle Candy Drive each year. It is a hard operation in non-COVID years! With thousands of pounds of candy filling her garage. In addition, we have a constant stream of volunteers who typically sort candy. But Ali and are family are totally behind our mission. Naturally this year, there are NO volunteers or gatherings!

Today, Peter and I went over to Ali's house to assess what has been shipped to her from our Amazon Wish List. The boxes you see behind Grayson (photo above) are all the chips, coffee, cookies, and nuts that have been generously donated to Mattie Miracle from our supporters! TOTALLY INCREDIBLE. 

I honestly thought we'd get little to know candy. As candy coming to us this year must be in its original unopened vacuumed sealed bags. Yet at the moment we have 7 full bins of candy! With more on the way. I feel much more confident now that we can stock our snack carts at hospital shortly with the supplies it needs! 

Did you know our snack carts serve 1,500 families a year? These are families caring for children with cancer and other life threatening illnesses! Our carts are considered life savers, which help families meet their most basic of needs under the most stressful of times.  

Wednesday, November 4, 2020

Wednesday, November 4, 2020

Tonight's picture was taken around Halloween of 2008. Mattie was in the child life playroom and student groups from the University came by dressed in costumes to entertain and play with the kids. Though Mattie was recovering from surgery and his right arm was all bandaged up, he found a way to have fun, participated in the activities, and made the moment memorable for all of us involved. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• number of people diagnosed with the virus: 9,465,646
• number of people who died from the virus: 233,535

During the week, we like to walk Sunny on Roosevelt Island. It typically isn't busy, and we are surrounded by greenery, which is peaceful. Given the frenzy of the election, peace is hard to find. Which is why we retreat to the Island. Nonetheless, while walking Sunny, I noticed a young woman with two children. The woman herself had to be in her early thirties, White, appeared educated, and her two children were under 5 years of age. It was a beautiful weather day today, so it was the perfect way to get the little ones to expend energy and enjoy nature. 

Unfortunately, as I approached the woman I couldn't help but read her VERY BOLD AND VERY RUDE statement on her sweat shirt. I think we are all entitled to have freedom of speech and to express our opinions, but why should an educated woman with two young children be wearing a sweat shirt that said F*CK twice? Doesn't she have the skill set to use more substantive words? Better yet, how stupid does she think her children are? 

Children are like sponges, and like me, they too are absorbing what's on the front of her shirt. This mom was the poster child today for all that is wrong in our country, and serves as a terrible role model for her child. I couldn't get over the obscenities on her shirt, and literally as Peter and I passed her, we said her shirt was vulgar and that we were concerned for the welfare of her children. 

I have found this whole interchange very upsetting today, because I feel that parents have a moral and ethical obligation to their children. All I could see here, was a mom more interested in her own opinions and lashing out, rather than using our world's state of affairs as a teachable moment. Nothing positive is going to be learned from obscenities and I am mad that she has two healthy children in front of her and she takes for granted her chance to be a role model, change agent, and a beacon of hope. To me none of this is acceptable, yet who is going to confront anything now a days? Certainly in our cities, it isn't a good idea, especially if you have a high regard for your own personal safety and security. 

Tuesday, November 3, 2020

Tuesday, November 3, 2020 -- Mattie died 579 weeks ago today. 

Tonight's picture was taken on Halloween of 2008.....Mattie's last Halloween. He was home recovering from his first limb salvaging surgery. However, that year, Mattie celebrated Halloween twice. He went trick or treating at the hospital (pictured here) and then later with his friend Zachary. Mattie was very strategic about picking out his costume. He was allowed to go to the outpatient clinic and be the first child to pick out a costume. I will always be grateful to Mattie's art therapists and child life specialist. They knew that Mattie was very self conscious about his bandaged arm. Mattie was also concerned about being around other children who would potentially knock him over for hit his arm. So having private access to the costume room was brilliant. Mattie carefully examined each costume and then picked the mummy costume. He felt that it would cover his bald head and his bandaged arm. Making it seem like he was just a kid and NOT a kid with cancer. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 9,365,360
• number of people who died from the virus: 232,484

Given the role I serve with Mattie's Foundation, I try to be apolitical. I keep my ideas to myself, because childhood cancer is non-partisan, and we work with people on both sides of the aisle. 

Tuesday is my grocery shopping day. Yes I have a schedule! I am sure that surprises no one who knows me. In any case, I went grocery shopping and two things were very evident! One the shelves were empty like during a snowstorm or crisis and two, there was a big sign on the grocery store door saying they were closing today at 10pm. Which is unheard of for this store! Why? Because of the election. What kind of world do we live in that we have to worry about our personal safety, boarding up stores and businesses, and residents in cities having to worry about stock piling of food and paper products? In fact, our neighbor the George Washington University sent out an email this week saying....... students and faculty should prepare for potential protests by having food and other necessities stored in their dorm rooms or homes.

In fact, I came across this article entitled, People are stocking up on money, fuel and meals to prep for potential Election Day unrest — ‘It’s not a pure catastrophe. It’s an election.’ Click on the link if you want to read it for yourself. For days, maybe weeks, this level of fear, uncertainty, and anxiety have been all around me. I hear it on TV, radio, and from my neighbors. I think walking into the grocery store today actually jolted me into reality about the dangers that could  potentially be heading our way in Washington, DC. Needless to say, on top of living with lock downs from Coronavirus, we have to worry about potential violence as well. All of this has great mental health consequences, because wherever we are, we can't find peace. 

Monday, November 2, 2020

Monday, November 2, 2020

Tonight's picture was taken on Halloween of 2007. Mattie was five and half years old and this was Mattie's first year not in a sweat suit type costume. In fact, Mattie said he wanted to be an Air Force Pilot for Halloween. So it was the first year, we went to the costume store together, looking high and low for a costume. The costume you see here, was a Naval pilot uniform. So when I got home, I contacted my friend who is a retired Lt. Colonel in the Air Force. She and her colleagues sent us many Air Force patches, which I hot glued onto the costume. Mattie was thrilled! 

In kindergarten, Mattie's school had a costume parade. He enjoyed the whole experience, as did I! I am so glad I went to see the parade, as I have learned you sometimes don't get second chances.

Quote of the day: Today's coronavirus update from Johns Hopkins.

• number of people diagnosed with the virus: 9,270,711
• number of people who died from the virus: 231,353

I had the opportunity to tune into a lunchtime webinar today entitled, Beyond Fairytale Endings: Bibliotherapy and Creative Interventions in Palliative Care. One of the presenters is our friend and the researcher we have worked closest with to develop the Psychosocial Standards of Care for Children with Cancer. 

The webinar focused on the role of bibliotherapy to support children who are dying. When dealing with personal issues such as anxiety and depression or coping with grief, sometimes it can be difficult to make sense of what is happening in your mind and body, especially if you don’t have any other experience to compare it to. Bibliotherapy aims to bridge this gap by using literature to help you improve your life by providing information, support, and guidance in the form of reading activities via books and stories.

The presenters told us that they wrote their own children's book called the Gift of Gerbert's Feathers. Why did they write such a book? Because after extensive research in the children's literature world, they only found 5 books in total that were geared to a child who is dying. The majority of books on grief and loss for children focus on the loss of grandparents or a pet. 

The notion of a child dying is hard to grapple with. In fact, though families need great support during this time, this is typically when the treatment team begins to distance themselves from you. It becomes near impossible to accept that your child is dying, much less have a conversation with your child about the process. This is something that I still reflect upon with Mattie. He died, and I don't know his wishes. I have no idea how he wanted to be remembered. Mattie was 7! I don't know how a parent has such a conversation with a 7 year old, but the webinar did introduce me to some wonderful books for my toolkit. I share them below in case you are interested. 

A video introduction with activities, to The Gift of Gerbert's Feathers:

Children's Books on Loss....................................

• The Heart in the Bottle: There is a wonder and magic to childhood. We don’t realize it at the time, of course . . . yet the adults in our lives do. They encourage us to see things in the stars, to find joy in colors and laughter as we play. But what happens when that special someone who encourages such wonder and magic is no longer around? We can hide, we can place our heart in a bottle and grow up . . . or we can find another special someone who understands the magic. And we can encourage them to see things in the stars, find joy among colors and laughter as they play.

• The Invisible String: The perfect tool for coping with all kinds of separation anxiety, loss, and grief. In this relatable and reassuring contemporary classic, a mother tells her two children that they're all connected by an invisible string. "That's impossible!" the children insist, but still they want to know more: "What kind of string?" The answer is the simple truth that binds us all: An Invisible String made of love. Even though you can't see it with your eyes, you can feel it deep in your heart, and know that you are always connected to the ones you love. Does everybody have an Invisible String? How far does it reach? Does it ever go away? This heartwarming picture book for all ages explores questions about the intangible yet unbreakable connections between us, and opens up deeper conversations about love.

• Nana Upstairs & Nana Downstairs: Tommy is four years old, and he loves visiting the home of his grandmother, Nana Downstairs, and his great-grandmother, Nana Upstairs. But one day Tommy's mother tells him Nana Upstairs won't be there anymore, and Tommy must struggle with saying good-bye to someone he loves.

• Dream Tree: Patti Caterpillar resolves to tell her caterpillar friends what it is like to be a beautiful butterfly when she becomes one herself.

• Lifetimes: Lifetimes is a moving book for children of all ages, even parents too. It lets us explain life and death in a sensitive, caring, beautiful way. Lifetimes tells us about beginnings. And about endings. And about living in between. With large, wonderful illustrations, it tells about plants. About animals. About people. It tells that dying is as much a part of living as being born. It helps us to remember. It helps us to understand.

• Water Bugs & Dragonflies: How can we answer the many questions young children have about death? Doris Stickney and her minister husband were looking for a meaningful way to explain to neighborhood children the death of a five-year-old friend -- an explanation that would satisfy not only the children but adult minds as well. While they were preparing for the child's memorial service, the fable of the water bug that changed into a dragonfly came to mind.

Sunday, November 1, 2020

Sunday, November 1, 2020

Tonight's picture was taken on Halloween of 2006. Mattie was four and a half years old and was headed to Zachary's (a preschool buddy) house to go trick or treating. Ironically, Mattie and I made this calico cat costume together in 2005. However, because he was hospitalized for sepsis on Halloween, he never wore his costume. Fortunately, it was made out of sweat suit material, and by 2006, the costume fit Mattie perfectly. 

Quote of the day: Tonight's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 9,189,715
• number of people who died from the virus: 230,870

I have gotten into a routine now. The first thing I do when I get up in the morning is make breakfast and take it to my computer. Where I spend an hour or two doing continuing education. I find if I don't focus on it first thing in the morning, I don't have the time or energy to do it later in the day. Yesterday I finished a trauma course and today I started a 12 hour course entitled, Telehealth for Mental Health Professionals: 2-Day Distance Therapy Training.

One of the first slides the instructor showed us was this! Can you get over what happens in a minute on the internet? It is hard to believe that there are 973,000 Facebook logins, or how about 187 million emails are sent, or $862,823 spent on purchases on line in ONLY ONE MINUTE!!! 

Given the role that I serve in my profession, it is important that I understand trends and know how therapy is being applied across the country. Which is why I signed up for a telehealth course! This issue has come to a head during the Pandemic. Once telehealth was just an abstract concept and providers could choose to do it or not. Now the choice has been made for them, especially if they want an income.

The instructor shared with us some information that helped us see the trend or increase in internet usage in the USA. 

Whether we are talking socioeconomics or demographics, the trend is upward in internet usage. 

Imagine if 2020 was on this list! It would be 100%!

Again, the percentage would be far higher if we examined 2020!

Our instructor showed us this 4 minute video clip on what the internet is doing to our brains! I found it fascinating and I unfortunately do see the profound impact of such distractions in myself and others.  See it for yourself.......................

Our adventure today was to Great Falls Park. As soon as we started walking, we came across a mama deer and her baby! A favorite sighting of Mattie's! I can imagine his reaction if he saw this and frankly I can still hear his commentary in my head. 

The mom!

The baby!

They deemed us safe and continued foraging through the grasses!

The beauty of the falls.