Mattie Miracle 15th Anniversary Video

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

November 14, 2020

Saturday, November 14, 2020

Saturday, November 14, 2020

Tonight's picture was taken on November 13, 2007. It was Peter's birthday and that day Mattie wanted to bake a cake with me for his dad. Like Mattie, Peter is not a chocolate fan. So naturally we made an all vanilla cake! I am so happy we did this together and that I captured these photos as reminders of our life together. 



 

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

  • number of people diagnosed with the virus: 10,859,661
  • number of people who died from the virus: 245,495

Yesterday was Peter's birthday. He worked the whole day, and I was on a marathon licensure board meeting. What Peter did not know was for two weeks I had been planning a small surprise party for him and some of his friends. The party happened to fall on his birthday, but it really was a congratulations party on becoming a president and CEO of a company. 

I held the party in my friend, Ann's backyard. While Peter was working this week, I snuck out twice to buy party supplies, set up decorations, and to make floral arrangements and the list went on. Getting Peter to Ann's last night was a feat, but I managed to pull it off without him suspecting something was up. So he was truly surprised..... as this photo captures Peter as a statue! Trying to figure out what was going on around him!

We lucked out with the weather. It was clear, crisp, but not freezing. I made five floral arrangements for the party. Sticking with a fall theme and using LOTS of mums!
It may not look it but I spent about four hours hanging gold stars and decorations from the rafters of Ann's deck. I wanted the space to twinkle. 


Peter with his cake! The cake was wonderful! Featuring both vanilla and coconut. 
I had the food catered for the small gathering. Which was great, because at this point in lock down, I am sick of cooking. 
My sunflower buffet table display! Given that I did not want people touching each others utensils, I wrapped each set with a napkin and tied it with gold ribbon. 
Love the cake! It read...... Happy Birthday Mr. President. I know if I asked Peter whether he wanted a party or not, he'd say no. So I side stepped the asking and did what I wanted to do. Which was to acknowledge Peter's achievement, all that he has survived and had to deal with as a bereaved father in the workplace, and naturally to make him feel special! 


November 13, 2020

Friday, November 13, 2020

Friday, November 13, 2020

Tonight's picture was taken a few days before Peter's birthday in November of 2008. Though November 13 is Peter's birthday, on November 12, 2008, Mattie underwent a 12 hour limb salvaging surgery. Therefore, Mattie wanted to celebrate Peter's birthday before his surgery. Mattie worked with his art therapists to create this colorful model magic birthday cake! This cake was treasured then as it is treasured now. It sits on the bureau in our bedroom, and it will always remind us of this moment in time. In many ways all the things Mattie created during his time in the hospital became part of his legacy. 


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

  • number of people diagnosed with the virus: 10,693,773
  • number of people who died from the virus: 243,387


Still plugging away with continuing education. Thirty minutes more to go! However, today, the session I was watching showed a TED talk, that I attached below. It is about 14 minutes long, but worth a watch. Especially if you are at all curious about the impact of social media on one's mental health!

Do you know that there is something called Facebook Addiction Disorder? Well there is and it is defined as an addictive behavior caused by an uncontrollable level of accessing and using Facebook, which negatively affects other face-to-face social activities, studies, jobs, interpersonal relationships, and physical health.

Specifically it is categorized by psychological factors such as salience, tolerance, mood modification, relapse, withdrawal, and conflict. Salience is related to the mental state of continuously thinking about Facebook, whereas tolerance is related to the tolerance level of Facebook usage (eg, increase the time spent on Facebook to reach to the same effect that was initially experienced using Facebook). Mood modification is associated with whether Facebook affects current moods of the user, and relapse is linked with failed attempts of Facebook usage reduction. Meanwhile, withdrawal and conflict are related to negative conditions and effects because of failure in accessing Facebook, in which withdrawal is associated with negative conditions such as becoming restless because of failure in accessing Facebook, whereas conflict is linked with negative effects such as Facebook causing negative impacts on individuals’ current academic or professional life.

Research has revealed that Facebook addiction have caused negative psychological effects such as emotional problems, relational problems, health-related problems, and performance problems. In terms of emotional problems, Facebook addiction has been revealed to cause negative mood alterations such as depression and anxiety, development of deficient self-regulation, as well as task avoidance and procrastination. With regard to relational problems, Facebook addicts have experienced negative relationships in terms of family conflicts, impaired concentration at work or school, and problematic peer relationships, thus contributing to interpersonal relationship detriment. With regard to health-related problems, Facebook addiction has also been associated with sleep difficulties such as insomnia and somatic problems as well as poorer sleep quality. Meanwhile, for performance problems, addiction to Facebook has caused job losses and negative effects of self-reported work performance.

In my continuing education class the instructor had us look at the "Facebook Addiction Quiz," https://psychcentral.com/quizzes/facebook-addict-quiz/. Interestingly enough many people had "yes" answers to these questions. I am intrigued by this because I truly am not wild about social media. I use it for the Foundation, but overall, have migrated away from it. Initially because I felt the majority of users couldn't relate to my issues and it is very hard to see constant "happiness" or comparisons to other peoples' lives. Nonetheless, there is a part in the TED talk below that asks school aged kids to give up ALL social media for a week. The reactions were fascinating! Sure they had a hard time, some had a slip and sent a photo or a Facebook posting, but what the kids discovered was what was noteworthy! They found that they got their LIFE back by not tuning into social media. Instead, they had the time to go outside, to SPEAK face to face with people, and ultimately were happier about their new found freedom. 

Is Social Media Hurting Your Mental Health? | Bailey Parnell | TEDxRyersonU:


November 12, 2020

Thursday, November 12, 2020

Thursday, November 12, 2020

Tonight's picture was taken in November of 2007. Mattie was 5 years old and was in Boston visiting Peter's parents. That day, Mattie got together with his cousins and they raked a big leaf pile and then took turns on the swing jumping into the pile. Mattie was on board with piling up the leaves, but was a bit cautious about swinging and jumping into the leaves. So he did it his own way, a bit more gingerly and not much jumping. I am so glad Mattie traveled and got to experience so many fun things in his short 7 years.  




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

  • number of people diagnosed with the virus: 10,516,513
  • number of people who died from the virus: 242,557


I received a text message last night from my lifetime friend, Karen. She wanted to share a story about a swan on a NYC subway! Honestly that was hard to believe, until I read the story and saw the video. In a world that seems divided, angry, and at times chaotic, I enjoyed reading this story and I hope you do too! We all need more sweetness, acts of kindness, and to reflect back on our humanity. 

So I introduce you to a story entitled, Sick Swan Takes City Subway Ride After Saved By Good Samaritan. The main character in the story is Bae, the swan. Who was found injured and suffering from lead poisoning. Literally a woman picked up this 17 pound bird and carried it in her arms, boarded a subway train, and took the bird to a wild bird hospital. Yes the subway was a bird ambulance in a way! Seems to me this good Samaritan and Bae the swan could be a children's story in the making! I know Mattie would have LOVED IT. 

Mattie and I saved many ducklings one year trapped down a dc sewer grate. It took us hours to call the right people in Washington, DC. Animal control came and rescued each chick, while mama duck was watching us closely from afar. Needless to say, chicks and mama duck were caged and transported back to the Potomac River. A successful outcome. Just like Bae. 

The story about Bae had me laughing, because the good samaritan reported that nobody paid a bit of attention to the swan on the subway. Like it was just another day in NYC. Or as she said, in "New York City you see wild things everyday!"

Check the video of Bae:

November 11, 2020

Wednesday, November 11, 2020

Wednesday, November 11, 2020

Tonight's picture was taken on Veteran's Day of 2007. That year we took Mattie to the parade. Given that the parade was blocks from our home, we walked! Mattie enjoyed the whole experience and it was wonderful to see the crowds cheering and all the American flags waving as service men and women passed us by. 


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

  • number of people diagnosed with the virus: 10,361,918
  • number of people who died from the virus: 240,782


While checking out of the grocery store yesterday, I had a conversation with the cashier. She was talking to me about Veterans Day and wanted to know why it is celebrated on a Wednesday this year. She remarked that it is usually on a Monday. I honestly couldn't comment, as I did not have enough facts or knowledge about the holiday. Which wasn't good on my part! I believe it is important to understand one's own country and the traditions it follows. Now after reading about Veterans Day, I can confidently say that Veterans Day has been on November 11th since 1975. A significant day, as World War I ended on the 11th hour of the 11th day of the 11th month of 1918!

While the holiday is commonly printed as Veteran's Day or Veterans' Day in calendars and advertisements, the United States Department of Veterans Affairs website states that the attributive (no apostrophe) rather than the possessive case is the official spelling because it is not a day that 'belongs' to veterans, it is a day for honoring all veterans.


Here are some facts about the veteran population today:

  1. 18.2 million living veterans served during at least one war as of 2018.
  2. 9 percent of veterans are women.
  3. 7 million veterans served during the Vietnam War.
  4. 3 million veterans have served in support of the War on Terrorism.
  5. Of the 16 million Americans who served during World War II, about 325,000 were still alive as of 2020.
  6. 2 million veterans served during the Korean War.
  7. As of 2019, the top three states with the highest percentage of Veterans were Virginia, Wyoming, and Alaska.

November 10, 2020

Tuesday, November 10, 2020

Tuesday, November 10, 2020 -- Mattie died 580 weeks ago today. 

Tonight's blurry photo was taken in December of 2007. What was the context behind this photo? Well Mattie just had a tantrum, a full blown melt down. I can't recall what set him off, but once he got calmer, he came into the kitchen to find me. So I lifted him up onto the kitchen counter, to talk with me. I think his impish face says it all, doesn't it?


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

  • number of people diagnosed with the virus: 10,209,870
  • number of people who died from the virus: 239,306


I received an interesting email that was forwarded to me from a friend today. The forwarded message was a blog posting from a mom with three children. The mom is concerned about the impact of mask wearing on the development of her three young children. I attached her message below, and then following the message, I highlight what the research seems to suggest.

I am the mother of 3 children. Our youngest is 5 months old. Masks have been a very sore subject with me from the beginning for many reasons. Our oldest is 4 years old. His preschool teachers are required to wear them and our son is extremely troubled by them. He's never seen his teachers' faces! It's a daily struggle to help him deal with this abnormal and disturbing world he all of a sudden lives in. 

While this is endlessly upsetting for me, what has me even angrier is the world our baby has been born into. In her 5 months on this earth, aside from our family,  she has never seen another human face! When we go out in public, she doesn't know that there are human faces and perhaps a smile behind those ridiculous masks. She just sees figures wrapped up like mummies. What must she think of the world? What is she learning about her surroundings? To her, this dystopia is going to be "normal." 

Our baby is extremely alert and engaged, smiles in response to every smile she's given, and studies our faces intently when we talk and sing to her. As a mother, I know you know that this is how babies learn to talk and learn to communicate with facial expressions. Every parent knows this. Doesn't it concern anyone else that millions of babies are being deprived in a significant way of this opportunity to learn and develop? To flourish in the presence of normal human interaction? No one seems to think or care about the psychological and developmental damage these masks are doing to our children and babies. 

 

I found this mom's commentary very interesting! I can't imagine how masks are perceived by children. I know that as an adult, who IS NOT used to wearing a mask, I have difficulties. I find I have trouble understanding what some people are saying, I honestly can't tell peoples' emotions anymore from simple facial expressions, and overall I feel like masks prevent human connectivity. So what are pediatricians and psychologists saying about this topic? Well A LOT actually. Just google it! Lots of articles will pop up. I came across the article entitled, Do Masks Impede Children’s Development

Here's the beauty of science! There are always two camps (or more) of thinking on an issue. So below you what both sides are saying...............

Potential Issues

  1. Kang Lee, a professor of applied psychology and human development at the University of Toronto, who studies the development of facial recognition skills in children, pointed to three potential problems masks might pose for children in interacting with classmates or teachers. First, he said, kids under the age of 12 may have difficulty recognizing people, because they often focus on individual features.
  2. Second, and perhaps more important, he said, “a lot of our emotional information, we display through movement of our facial musculature.” Because that musculature and therefore that information will be obscured by a mask, he said, children may have issues with “emotional recognition and social interaction.”
  3. And finally, Dr. Lee said, children may have problems with speech recognition; even though we tend to think of speech communication as taking place through sound, he said, a great deal of information can be communicated visually.
  4. David Lewkowicz, a senior scientist at the Haskins Laboratories and the Yale Child Study Center, has studied lip-reading in babies. Around the age of 6 to 8 months, he said, as babies start to babble, they change the ways that they are looking at people who are speaking to them. Instead of concentrating on the eyes, he said, “they spend a lot of time looking at that person’s mouth, trying to master their own native speech, getting not only auditory cues but visual.”
  5. In one type of experiment, people are asked to look at multiple faces on a screen, while listening to a voice talking — but the voice is synchronized with only one of the faces. Children as young as 3 already tend to show a preference for that synchronized face, and the preference gets markedly stronger as they grow.

----------------------------

Children compensate

  1. Eva Chen, a developmental psychologist who is an associate professor at the Hong Kong University of Science and Technology, focuses her research on children’s cognitive development with respect to social groups. “We should give more credit to our own children,” she said, “that being covered for a few hours every day isn’t going to make them less able to recognize social expressions.” Voices, gestures and overall body language are all important for children, she said. While children typically pay attention to people’s mouths while they are talking, “it’s by far not the only cue children have to communicate and to learn,” she said, and referenced a 2012 study showing that children were able to read facial emotions just as well when a mask was added.
  2. In fact, all of the scientists I talked to who have studied the complex ways that children process and use the information hidden by masks also believe that children will find ways to communicate, and that parents and teachers can help them. Several of them also pointed out that children with neurodevelopmental issues such as autism will need special help and special consideration — but also that some of the techniques that parents and teachers already use to help these children learn to interpret social cues may be helpful for everyone when masks are in use.
  3. In Hong Kong and elsewhere in Asia, it’s standard to wear masks as protection against illness or air pollution. Because there are always a fair number of people wearing masks in public, “culturally, there is not the same level of anxiety — not the urgency to see whether wearing masks interferes with children’s development that we have heard from European colleagues and American colleagues,” Dr. Chen said. People understand, she said, that children will see the full faces of parents and siblings at home.
  4. And given the adaptability of children’s brains, it seems reasonable to hope that one effect of spending time masked and around masked people may be that children actually improve their ability to read those other cues. Children may end up “more sensitive to tones, more sensitive to someone’s overall body language,” Dr. Chen said.


I think reading these insights from researchers is helpful, but at the end of the day, no one knows their children better than the parents. I absolutely understand a parent's concern about the long-term impact of mask wearing on child development. In all reality, scientists really do not know the long-term impact on our children in the United States, and only time will tell. I find citing comparisons of the US to other cultures, is like comparing apples and oranges. Mask wearing maybe the norm in other countries but in the United States, this is very foreign to us. It constricts our freedom to use our entire face to communicate and therefore, parents, caregivers, and teachers are forced to learn in real time how best to educate and communicate with our children during COVID-19. 

November 9, 2020

Monday, November 9, 2020

Monday, November 9, 2020

Tonight's picture was taken in November of 2007. That Thanksgiving, we took Mattie to Boston to visit Peter's parents. In typical Mattie fashion, despite the cold, we were outside and interacting with nature. Mattie loved feeding the ducks and swans and you can see Mattie was beaming!



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

  • number of people diagnosed with the virus: 10,022,557
  • number of people who died from the virus: 237,979


It was a BIG day in our home today! Peter started a new job. For a year now, Peter has been actively looking for a job. He worked in his prior job for 15 years, until his company merged with another larger company. So since November 1, 2019, Peter has been searching for his next opportunity. Of course, how one goes about finding a job has changed drastically in 15 years. Now everything is electronic and there is definitely a strategy about how to get noticed as a potential employee on-line. Peter certainly learned a lot in this past year, and as a by-product so have I. However, thanks to COVID, this was NOT a USUAL year. Which made job searching ten times harder. 

One could say, what's the big deal? People are unemployed all the time, and have to find new jobs! This maybe true. However, the one caveat though is most people do not have a history of childhood cancer in their family, nor have they lost their own child to the disease. When Mattie was diagnosed with cancer, Peter was working! Thankfully, because his company's health insurance was crucial to providing for Mattie's treatment. Though Peter tried his best to maintain working by day and caring for Mattie in the hospital by night, it was challenging. Of course Peter's mind couldn't possibly be focused at work and even though colleagues may have seemed sympathetic, they did not quite understand what Peter was up against. In fact, in many ways, they viewed him as "broken" and "distracted." Not only did people internally feel that way about him, but externally they projected this onto Peter. Soon after Mattie died, Peter realized he had to plow passed the trauma and engage back into his work full-time. Trust me, that alone is an incredible feat. Most of Peter's colleagues thought he was going to fail, and the company thought Peter would crash, burn, and need to be let go. 

THAT DIDN'T HAPPEN! It didn't happen because Peter was determined. Isn't this something? You lose a child to cancer, and there is no empathy or compassion. Instead, there is judgment, stigma, and people undermining you at every turn. As I remind Peter all the time, he survived Mattie's cancer treatment and death, so in all reality there is nothing he can't do! Yet walking away from a job Peter had for 15 years was difficult. A lot was wrapped up into that job, including Mattie, Mattie's diagnosis, and death. Perhaps it was also through Mattie's cancer journey, that Peter's mindset evolved! As Peter feels that the quality and character of those he works with is important, and he was determined to find a better fit for himself.  

So to me, it takes guts to go back to work after Mattie died, and similarly it took guts to find a new job during COVID-19. Not just a job, but a job that Peter can grow, learn new skills, and advance his career and potential. Congratulations Peter on becoming the President and CEO of Thornberry, a LivTech company

November 8, 2020

Sunday, November 8, 2020

Sunday, November 8, 2020

Tonight's picture was taken in November of 2007. That weekend, we went for a walk on Roosevelt Island. It was practically a weekend tradition for us. The Island is close to our home, it has wide open space, plenty of trees and things to explore, and it was a place Mattie absolutely loved! In fact, as a baby, Mattie was most at peace when he was outside. It did not matter the temperature. Prior to Mattie coming into my life, I really did not spend much time outside. Much less walking and exploring in the woods. Mattie changed all of that for me, and to this day, I am more comfortable being outside than inside. 


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

  • number of people diagnosed with the virus: 9,949,530
  • number of people who died from the virus: 237,488


Believe it or not, I am still working on obtaining my continuing education credits for my license. These credits are due by December 31. However, I am determined to get all 40 hours done before mid-November. I have only FOUR more hours left. I have found the way to meet my goal is getting up early each morning and spending an hour or more a day on these trainings. Taking anything in small dosages truly makes it manageable. It reminds me of graduate school. 

I enrolled in a Telehealth for Mental Health Professionals class, that is 12 hours long. Today the instructor showed a 3-4 minute video featuring Ellen's talk show. The purpose of showing us the video was to remind us of the importance of making sure the person we are working with understands the technology that we plan on using! It was a cute way to get this message across. I included the clip below, because how the kids reacted to an old cell phone and an answering machine had me laughing hysterically. 


Ellen introduces kids to technology of yesterday:


We took Sunny to Seneca Regional Park today in Great Falls, VA. This was a first for all of us. Sunny got a work out going up and down hills, but there is a trail right by the Potomac River, which was beautiful. 
We came across many people along our 4.5 mile journey. I can't tell you how many stopped to tell us we have a beautiful dog. The beauty of Sunny is that his specialness is on the inside too!
The amazing trails. 
It was so quiet in the woods, that we could hear leaves dropping. I can't remember the last time I heard NOTHING else around me. 
It was a glorious 70 degree weather day and after our journey, Sunny was worn out! Yet despite how tired he may have been, he never passes up the opportunity to look out the window!