Mattie Miracle 10th Anniversary Walk was an $119,000 success!

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

February 19, 2020

Wednesday, February 19, 2020

Wednesday, February 19, 2020

Tonight's picture was taken in February of 2006. Mattie was almost four years old. That afternoon, Mattie was busy building with his tinkertoys and of course his vehicles were integrated into his play scheme. What I love about this photo was Mattie's incredible smile. 


Quote of the day: Should grievers be given the freedom to mourn endlessly? Is it okay to withdraw, to be antisocial, to be far from the friend, daughter, wife, mother you once were? Is that understandable, justifiable when grief has stolen so much of your heart? Or does there come a point when enough is enough, when it is time to move on? ~  Jess McCormack


I came across the article entitled, Loving a grieving friend - even when it's hard, in one of my Facebook groups. It is an intriguing article written by a mom whose child died. Many aspects of what she highlights in her story, I absolutely relate to, as friends for the most part really want us to snap out of it and return to 'normal.' Or better yet, they think that we can see a professional, and magically we will 'be fixed.' Boy if it were that simple, every bereaved mom would be signing up for this magic therapy. 

In the article this mom describes a letter she received from a friend eight months after her child died. The letter proceeded to tell this grieving mom that she was being "selfish" and unable to see beyond her problems. Which is why this friend wanted out of their relationship! The grieving mom went on to say that this same friend understood how she was feeling immediately after her child died, but clearly did not have the same compassion eight months into the grieving journey. Needless to say the by-product of this letter was that the grieving mom felt guilty and deemed herself a terrible friend. 

Personally her recount of her friendship with this woman was very insightful. Because like so many of us bereaved moms, friends and society deem what is the APPROPRIATE amount of time to grieve. Clearly this woman's friend felt that eight months was more than enough time, and now she had to return back to the way she used to be! She wanted the bereaved mom to have a wake up call (and thought the letter was the way to accomplish this)! Newflash..... the wake up call should be offered instead to the friend! 

I found the word "selfish" in this article very irritating. I don't direct my irritation to the bereaved mom, but rather to those around us. To an outside observer, perhaps bereaved moms appear to be selfish and we are wrapped up in our own thoughts and feelings. The thing is that this isn't selfishness, this is how we manage the trauma we experience(d). It takes quite a long time to find a way to integrate this trauma into our daily lives and frankly even when we appear to have accepted this life altering change, there can be times (milestones, insensitive comments, holidays, etc) that re-trigger our feelings and when this happens it is not unusual for us to once again retreat from the world. Retreat and regroup, as I call it! This isn't a one time occurrence either, as we retreat and regroup at various points in our grief journey in order to protect ourselves, face our thoughts and feelings in a safe space, so that we may emerge back into the world and continue to live with our lifetime loss. 

I posted this article below and it is my hope that it gives friends of bereaved moms perspective. What may appear to be "selfish" behavior, is truly a protective mechanism that is needed to protect ourselves and to find a way to make meaning from our traumatic loss. 


Loving A Grieving Friend – Even When It’s Hard:

https://stillstandingmag.com/2018/04/22/loving-a-grieving-friend/

February 18, 2020

Tuesday, February 18, 2020

Tuesday, February 18, 2020 -- Mattie died 542 weeks ago today.

Tonight's picture was taken in February of 2006. Mattie was almost four years old and was sitting next to a flower pot his preschool class created with their painted thumb prints. Peter and I won this flower pot at the school's auction. To this day, I still have the flower pot!


Quote of the day: The ground rules were clear. A day before 328 Americans were to be whisked away from a contaminated cruise ship in Japan, the U.S. Embassy in Tokyo told passengers that no one infected with the coronavirus would be allowed to board charter flights to the United States. But as the evacuees began filing onto two reconfigured cargo planes early Monday for departures to military bases in California or Texas, some noticed tented areas separated from the rest of the cabin.Motoko Rich and Edward Wong


This is a photo posted in the NY Times, which illustrates Americans evacuated from the Diamond Princess cruise ship arriving at Lackland Air Force Base in San Antonio early Monday. 

This story about the Coronavirus on the Diamond Princess Ship troubles me deeply. Maybe because I have taken so many Princess cruises that I can only imagine the nightmare these passengers faced and the fear that they lived with while quarantined aboard the ship. Keep in mind, these passengers went on a two week cruise, then were quarantined for two weeks on the ship in Japan, and now will be quarantined another two weeks on a military base in the USA. That is six weeks and counting! Can you imagine being one of these passengers??? The panic they must feel wondering if they are going to get sick, wondering whether they would have to be hospitalized in a foreign country, and wondering if this happens, will they be separated from their loved ones?! 

Honestly it is a nightmare. Today I had to go for my second root canal. I had one in October, one today, and a third next week. It's my lucky year. However, despite that pain in comparison to these passengers, I felt lucky! While waiting for the endodontist today, I read this fascinating NY Times article entitled, They Escaped an Infected Ship, but the Flight Home Was No Haven. I posted the link below. 

The Times article is almost too hard to believe. As it reads more like a TV movie, but unfortunately what they are reporting is accurate. Outside of China, the Diamond Princess is the second largest location of people contracting the Coronavirus....... the count is at 454 passengers infected! When 328 US passengers boarded a cargo plane on Monday to return to the States, I don't think they knew the extent of the spread of this virus on their ship. Until they saw passengers on the plane quarantined behind plastic! These 14 American passengers were tested two or three days earlier for the virus, but the test results came back positive as they were heading to the airport in buses. Of course by that point, everyone on these buses could be infected. 

But it gets worse. Imagine traveling with a loved one on this ship and this loved one is identified as having Coronavirus. Your loved one gets evacuated off ship to a local hospital, but you must remain aboard the ship. Better yet, when American citizens are cleared to come back to the States, you are advised to board the plane and leave your loved one behind in a hospital in Japan. The Times highlighted this scenario with a family on the Diamond Princess. This article has left me besides myself, because what would I do if faced with such a scenario? What these passengers are experiencing, could happen to me and my family. Since we frequently cruise. However, the thought of being quarantined or having to forcibly separate from my family never crossed my mind. 

My thoughts go out to all the passengers and crew aboard the Diamond Princess and the one consolation is that one cruise passenger said when she arrived in California she was impressed with the number of specialists from across the country who were on hand to support the evacuees. She literally said she was "blown away," by the resources that greeted her back in the USA. 

They Escaped an Infected Ship, but the Flight Home Was No Haven:

https://www.nytimes.com/2020/02/17/world/asia/japan-cruise-ship-coronavirus.html?auth=linked-google

February 17, 2020

Monday, February 17, 2020

Monday, February 17, 2020

Tonight's picture was taken in February of 2008. Mattie was five years old and doing one of the things he loved best..... building and creating. As you can see, Mattie created a plane out of tinkertoys. I can't tell you how many Mattie creations filled our home on any given day, and when Mattie died, our home seemed transformed. Things were quieter, less vibrant, and in a way it felt like we were living in an alternative universe that made no sense to us. 


Quote of the day: Smooth seas do not make for skilled sailors. ~ African Proverb

In one of the professional counseling magazines I received this month, I noticed an article entitled, Helping clients grow from loss (https://ct.counseling.org/2020/02/helping-clients-grow-from-loss/). Naturally I felt compelled to read it. I should caveat my comments on this article with the fact that I have NEVER found a book on grief that has resonated with me. I can freely say this as I received practically a library's worth of books from people when Mattie died. People were good intentioned and wanted to help and support me. I am sure the thought was giving me a book would either show me the way through grief or that I would see that I was not the only person feeling this way. Either case, the books weren't helpful. I did not want to hear someone else's story, I did not want to hear how they survived it, and I most certainly did not want to read the grief "how to list" on what I should do to accept this loss and grow stronger. 

Don't you know it, in this article I read today, the African proverb (I highlighted above) was integrated in the story. I certainly get the analogy, that we learn more about ourselves and the world around us during the times we struggle. Certainly I can see this proverb working under most circumstances. But I truly do not like when people talk to me about what I learned and my "growth" after losing Mattie in a most hideous manner. In fact the whole notion of post-traumatic growth (a positive change that follows the struggle after some kind of traumatic event) irritates me. I get it, we want to put a positive spin on our losses. We want to highlight that even under the worst of circumstances we picked ourselves up, regrouped, and re-invested back in the world and in ourselves. 

In fact, research seems to indicate that there are 5 makers of post-traumatic growth:

  1. Improved relationships with others
  2. Greater appreciation for life
  3. New possibilities for one’s life
  4. Greater awareness of personal strengths
  5. Changes in spirituality
Certainly I have seen all five of these markers in my own life. But what I most resent about these conversations is it always makes it sound like a bereaved person would never have the opportunity to rise to this level of understanding without the traumatic event happening to him/her in the first place! Traumatic events happen tragically, none of us ask for them to happen, and personally trying to rationalize why they happen and attaching some positive spin to them negates the experiences and memories. 

A few weeks ago on the blog, I reframed that horrible saying.... 'things happen for a reason' and instead said we must find the meaning behind the things that happen to us. With that same line of reasoning, if I worked with trauma survivors, I would absolutely rework the lexicon from post-traumatic growth to post-traumatic meaning. How we progress forward living with trauma is not honing in on growth, but instead finding meaning behind our experiences, feelings, and thoughts. As I don't think I grew from Mattie's cancer diagnosis and death. Growth evokes guilt and frankly anger. But I have certainly found meaning from Mattie's cancer experience and I use this meaning to guide the work I do with the Mattie Miracle Cancer Foundation. 

February 16, 2020

Sunday, February 16, 2020

Sunday, February 16, 2020

Tonight's picture was taken in February of 2008. Mattie was almost six years old and that weekend we took him for a walk on Roosevelt Island. Which was a usual occurrence for us on the weekends. Mattie loved the Island and this particular spot. Do notice the big stick in Mattie's hand, as he loved to collect sticks and bring them home to add to his collection. Peter and I took Sunny to Roosevelt Island this weekend and of course passed this exact location that we snapped this photo 12 years ago. 





Quote of the day: True love stories never have endings.Richard Bach

Peter and I were watching an episode of Dirty Jobs today. If you haven't seen this series with Mike Rowe, it is worth checking out. As it isn't only educational, but it is very humorous. The episode we saw today was called "Exotic Nanny." Mike visited Sharkarosa, a non-profit in Texas (an hour from Dallas) featuring a 126 acre educational park that enables the public to experience rare and endangered exotic wildlife in a unique and personal setting. Have you ever heard of a zorse or zedonk? Well such cross breeds exist at Sharkarosa!

The zorse and zedonk – half zebra and half horse, and half zebra and half donkey!




Did you know that a male kangaroo's  hind legs can disembowel opponents (with that HUGE nail) such as other kangaroos or other animals? So they should be considered dangerous to people on foot, especially if they are approaching the animal too closely or scare it by accident.

The episode today also showed Mike running around with Sharkarosa employees after the kangaroos. They tried throwing nets over the female kangaroos that had a baby in the pouch. They do this so that they can acclimate the baby to human touch, noises, and drinking from a bottle. If this isn't done while the babies are still in the pouch, then the babies as they grow will never be comfortable around humans. Making it impossible for them to be transferred to zoos and other non-profits who educate the public about these beautiful animals. 

Watching them running around after the kangaroos was a sight to see. Kangaroos are fast, very strong, and you have to be careful not to get hit by the claws or the tail. 


All I know is Mattie would have loved this episode today and I am quite sure if he saw it, he would have requested that we make a family trip to Sharkarosa! 

Check out this short video on the Sharkarosa Wildlife Ranch:

February 15, 2020

Saturday, February 15, 2020

Saturday, February 15, 2020

Tonight's picture was taken on February 24, 2009. Mattie was home between hospital visits. Mattie loved all sorts of water play and when the Mattie couldn't get to the tub, I tried to make the tub come to him. We set up a waterproof table cloth on the floor and brought out big pots filled with water. Mattie had a great time washing his vehicles and playing. One thing about Mattie, was that he really did force those of us around him to think outside the box. As there was always more than way to get something done. With Mattie, I was motivated and always rose to the challenge. 


Quote of the day: There is no charm equal to tenderness of heart. Jane Austen

Yesterday I was listening to the radio, and I heard about the Washington Post article entitled, Rats will devour your car! A rather funny title really because it leaves you wondering how on earth a rodent could possibly take on a large metal object? But living in DC, I am not at all surprised! Since I am quite sure the city has more rodents than people. 

Rats, better known for inhabiting sewers and dumpsters, also love to settle in the innards of vehicles in cooler months (see the photo above, this is what a rat did under the hood of a car.... builds a nest out of rubbish and other found items). The warmth and shelter attracts them, but it's the wires and hoses that entertain them: Rats' teeth grow constantly, and they gnaw on things to keep their teeth trim. Inside an engine bay, they can blow fuses, start fires and even total cars. Blame is often cast on the soy-based wiring insulation that many auto manufacturers now use, which is considered ecologically sounder than the petroleum-derived insulation it replaced. The lawsuits have argued that it is also tastier to rodents and therefore defective, and that car warranties should cover rodent damage. 

Car owners in DC report significant car damage due to rodents. Try the $7,000 variety. Some car owners are so fed up that they have done one of two things..... 1) moved to a new home with enclosed parking, or 2) made it their life's mission to find rat deterrents to protect their car from further damage. Everything from wrapping car wires in sticky tape and hot pepper extract, to ultrasound waves, peppermint oil, owl decoys, and even electrified tiles under the car hood. There is even a man in San Diego, CA who started his own website: https://www.howtopreventratsfromeatingcarwires.com/.

All I know is I am very tired of seeing rats taking over our city. Of course Sunny LOVES it, and enjoys his evening walks, because he is focused on the art of the rat hunt! Not something we taught him. He is either naturally like this given he is a herding dog, or was taught to do this by his previous owner. Either case, my joke is the DC rat patrol teams could use Sunny! He is better at finding and locating rats than Orkin!

February 14, 2020

Friday, February 14, 2020

Friday, February 14, 2020

Tonight's picture was taken on February 14, 2009. I will never forget that day. I was locked out of the child life playroom at the hospital, so Mattie could work with his art therapists to great a Valentine's Day surprise for me. Mattie literally made me an entire box of Valentines. He decorated the box and even made me this glorious crown of hearts. I kept this box of wonderful creations and feel they are part of Mattie's legacy. Mattie's art therapist, Jenny, captured this photo of Mattie touching noses with me and looking into my eyes. This was a typical Mattie move, but one that wasn't always caught on camera, until this photo!


Quote of the day: We simply can't abandon ship every time we encounter a storm. Real love is about weathering the terms of life together. Seth Adam Smith


Nearly 64,000 cases of novel coronavirus have been reported in mainland China since December 31, 2019. This has become a global concern and something we hear about daily on the news. In fact, the CDC is closely monitoring the outbreak of this respiratory disease. On February 11, 2020, the World Health Organization named the disease 'coronavirus disease 2019' (abbreviated COVID-19). Coronaviruses are a large family of viruses that are common in many different species of animals, including camels, cattle, cats, and bats. Rarely, animal coronaviruses can infect people and then spread between people such as with MERS, SARS, and now with this new virus (named SARS-COV2).

Just like cancer, clearly the first focus is on the MEDICINE! Drugs that can fight back the disease and mitigate symptoms and the spread of the disease. But now two months into this outbreak, guess what is popping up? That's right, mental health issues and concerns. An article entitled, China launches hundreds of mental health hotlines amid coronavirus outbreak, is running all over the internet. Every news agency seems to be covering the issue, because like with any medical issue, IT'S NOT JUST ABOUT THE MEDICINE. What is reportedly on the rise in China is depression and PTSD. 

Yet unlike the USA, mental health issues remain a relatively taboo subject, and two issues are bubbling to the surface because of this: 1) will people feel comfortable expressing these concerns to officials, and 2) will there be enough "trained" mental health professionals on hand to manage these concerns. Currently, China has 2.2 psychiatrists available for every 100,000 people, this ratio is five times lower in comparison to the USA. 

Yet Chinese medical professionals welcome the launch of government run hotlines. Can you imagine how difficult life is for those living in China now? Being quarantined, not knowing if you are going to contract the virus, must less die because of it. I view this as deeply scary and challenging to our most basic needs for safety as human beings. It is hard to believe that we live in the 21st century and yet outbreaks and medical crises like this still exist. 


China launches hundreds of mental health hotlines amid coronavirus outbreak:
https://nypost.com/2020/02/13/china-launches-hundreds-of-mental-health-hotlines-amid-coronavirus-outbreak/

February 13, 2020

Thursday, February 13, 2020

Thursday, February 13, 2020

Tonight's picture was taken on February 12, 2006. Mattie was almost four years old. He was enrolled in preschool, and on Valentine's Day, all the children were going to exchange cards with one another. Certainly I could have bought cards for Mattie to draw on and hand out, but I thought he'd prefer creating them. So together, we worked on these cards and by the time they finished they looked absolutely lovely! 


Quote of the day: Your flaws are perfect for the heart that's meant to love you.Trent Shelton


I have been glued all day to a 550 page licensure board agenda for tomorrow. Should be quite a Valentine's Day meeting. In the midst of non-stop reading, I received an email from my friend Maria. Maria works in our complex and knew Mattie as a baby and toddler, before he was diagnosed with cancer. I would say that Maria is part clairvoyant as she has the ability to gain information about people through extrasensory perception. Specifically as it relates to Mattie, she continues to have an annual dream in which Mattie seems to be in it and has something to communicate to her. The beauty of Maria, is she remembers her dreams too. Which is unusual, because I know for the most part when I dream  I have no clear idea or understanding of the content when I awake. 
Here is this year's dream that Maria shared with me:
Darryl and I were shopping. He and I were holding hands. In my other hand, I felt a small hand. Shocked I looked down. It was Mattie around 4 years old. He smiled at me. We walked to customer service to ask where the towel section was… The lady said go to aisle 12.
Mattie asked politely “where can I find the toy aisle, I want to buy a hot wheel.” The lady smiled and pointed. Mattie smiled at her
As we were walking towards the toy section Mattie let go of my hand and went ahead. He looked back, waived, and said, "tell mommy hi!"
Before Mattie died, if someone told me they had a such a vivid dream with a message, I would acknowledge it. But wouldn't necessary pay much attention to the content. Or I should say I would pay attention to the meaning of the content, but not wonder whether a deceased person could really communicate to a loved one through a dream. Now I am much more open minded. I also know Mattie and I wouldn't put anything passed him, because when he wanted to communicate he found a way to make his thoughts, feelings, and presence known! 

February 12, 2020

Wednesday, February 12, 2020

Wednesday, February 12, 2020

Tonight's picture was taken in March of 2008. We took Mattie to a nature park that weekend and we came across a HUGE tree that fell over in a storm. As you can see, Mattie wanted to check it out and Peter snapped us standing in front of the base of the tree. Do notice Mattie was carrying a stick. Not unusual for Mattie, as he liked to pick up sticks and take them home to add to his collection! I remember after he died, we had piles of sticks in our commons area that sat there for years. 


Quote of the day: Crisis or transition of any kind reminds us of what matters most. ~ Russell Ballard


Transitions of any kind are difficult. Some are more challenging and even more traumatic than others. I remember when Mattie was a toddler (pre-cancer), it was next to impossible to transition from one activity to another. He did not appreciate change, especially change that wasn't on his own time line. Of course with practice and a lot of work to manage and prepare him for transitions, we found a way through it and what resulted was growth. As Mattie learned how to regulate such transitions himself and developed the art of being more flexible. But these are "normal" developmental challenges, which though hard, typically with age improve and even out. 

I met with a friend today and though we did not set out to talk about this, the theme of our conversation was transitions. All of her children are now in college and she is faced with what to do next. Given her focus, for over a decade, has been on child rearing, a mom can become quite lost when her children leave home. In comparison to my friends, I have experienced the empty nest syndrome way before them. Of course unlike their situation, Mattie did not leave to go to college, he died. Which is a vast difference, but what I have come to understand is that I am far ahead of my friends on this transition. Certainly I would go as far as to say, that my empty nest transition was far harder and far more complex. Because when Mattie died, I had to figure out how I was going to try to move forward with this loss, I had to face the fact that my identity of being a mom changed, and I also had to come to terms with my priorities and interests changing. So much so that I had no desire to return to the work I had once done. Though on aside, a former student wrote this to me on Facebook today..........You were the best professor, friend and advocate I ever worked with. You are always on my mind. I told Theresa that she made my day. 

Transitions can be good, such as getting a new job, moving into a new house, going to college, getting married, having a baby, winning the lottery, going on vacation and so forth. But unfortunately not all transitions are happy ones. Instead, some transitions are placed upon us such as being in an accident, being diagnosed with an illness, helping a friend die, or facing another traumatic event. Some transitions you can't prepare for and even if you could, would you want to? We can't live our lives fearing we will face a crisis every minute of the day. As worrying non-stop is exhausting and can be counter productive, yet we all wish to believe that when such a transition is trust upon us we will rise to the occasion. 

What I learned about Mattie being diagnosed with cancer and then dying, is that not everyone is cut out to help you manage a transition or crisis. Those you think will be there, may surprise you, and walk away. Yet, in our case, we had an extraordinary network in our community, 'Team Mattie,' who rose to each challenge we faced over a 14 month cancer journey. It is rather extraordinary. Though I rather have Mattie alive (and never have had a first hand experience with childhood cancer), if I had to find meaning in his 14 month cancer journey, then one of the things I would say I learned was that Mattie's story touched peoples' hearts and minds. His energy mobilized forces and now even 10 years after he died, his memory still inspires friends to support us, the Foundation, and to help other children with cancer. Bottom line, whether the transition is positive or negative, there is always meaning to found, we just need to look for it. 

February 11, 2020

Tuesday, February 11, 2020

Tuesday, February 11, 2020 -- Mattie died 541 weeks ago today. 

Tonight's picture was taken in March of 2008. That afternoon, Mattie came home from school and wanted more outdoor time. So we took his kite into our commons area and Mattie was learning how to fly it on his own. It is a sight I always loved seeing. Our commons area had just the right amount of wind to make it possible and our commons area was walled off from the street, so I never had to worry that Mattie was going to run into cars or bicycles.  

Quote of the day: Being able to communicate with coworkers via email and text messaging have turned our homes, the local coffee house, or virtually any place into an office space. ~ Gerald Corey


Like any licensed professional, we all have to do continuing education requirements to keep up to date in our field and to maintain our license. One of the professional organizations I am a member of provides one free CEU a month. It truly is a great perk and one that I am now taking advantage of. Every two years, I have to renew my license and as such I have to document 40 hours of continuing education. So think about it this way, if my professional association gives me access to one hour free a month, times that by 24 months (2 years), and more than half my requirements can be achieved without paying out of pocket (other than for my association membership of course). 

This months freebie is a one credit on ethics. So I thought this was going to cover specifics about our ethical guidelines or even decision making models when confronted with ethical dilemmas. Nope! To me surprise, the chapter I am required to read is focused on self care. Certainly it makes intuitive sense that if a mental health provider isn't caring for him or her, this will spill over into our work and our work relationships. When this happens issues with boundaries may arise and therefore can compromise our judgment and decision making. Truly that makes sense, but I never sat down long enough to think about it. 

Mainly because, all of us are moving and being pulled in twenty different directions in any given day. Trying to balance work and home life can feel next to impossible. The chapter does a lovely job discussing the challenges of working from home. With there being NO boundary at all. That work and home become synonymous with each other. I absolutely agree and I feel this way all the time. But it was nice to actually read about it and to hear that others too find this a significant problem. So significant that if not addressed properly, this can lead to burnout (which can be very easy to do, when running a non-profit without help). 

In fact, one particular line in this chapter caught my attention.... "her high degree of empathy and compassion for others resulted in losing herself in those relationships." How many of us can relate to this? I know I can whole heartily and trying to figure out how to keep my empathetic and kind nature, without being frazzled at the same time is important. Because I do think it is easier to give than to receive for many reasons, yet we do need to do both to survive and thrive. Any case, today's lesson was very interesting and one I wasn't expecting, as I was initially focused on the mechanics of ethics, and not truly taking a step back and connecting the dots between one's personal life influencing the professional one. 


Establishing Personal and Professional Boundaries (the chapter):

https://books.google.com/books?id=cZBDDwAAQBAJ&pg=PT198&lpg=PT198&dq=chapter+6+establishing+personal+and+professional+boundaries&source=bl&ots=94qgeKnZ2x&sig=ACfU3U0TAUFcvT1p6A5eLl2L_35a8IL9IA&hl=en&sa=X&ved=2ahUKEwiHlp-f8MrnAhVjlnIEHec5ANcQ6AEwAHoECAgQAQ#v=onepage&q=chapter%206%20establishing%20personal%20and%20professional%20boundaries&f=false

February 10, 2020

Monday, February 10, 2020

Monday, February 10, 2020

Tonight's picture was taken on February 27, 2008. That day Mattie's kindergarten class went to Martha's Table, to prepare sandwiches for the homeless members of our community. After all the sandwich assembly was done, Mattie and his friends took it upon themselves to clean up. Mattie and his closest buddies, Charlotte and Campbell, were sweeping away. I thought this was such a great sight, I took photos!


Quote of the day: You miss 100% of the chances you don’t take. ~ Wayne Gretzky


Tonight's quote resonates with me given what I have been working on all day. It is after 10pm, and I am still glued to the computer. What have I been doing? I have been looking for companies that donate to non-profits. Both financially and in kind contributions. It isn't as easy as you would think to apply for some of these opportunities and it is even harder to be selected as a recipient. 

The bigger companies won't even look at us unless we have an audited financial statement. Which is created by independent auditors who would attest to our financial statement's fairness and compliance with generally accepted accounting principles. Given our size and what we have been raising recently per year, we have moved to having a financial review by our CPA. But a financial audit is a big undertaking that is matched with an equally large price tag! A fee we can't justify spending right now. 

But as Gretzky's quote points out, I really won't know what we qualify for, unless I apply. So I have been busy typing away all day. Mind you I have a migraine, going on over 7 days now, and looking at the computer doesn't help. Therefore, I am signing off for tonight! 

February 9, 2020

Sunday, February 9, 2020

Sunday, February 9, 2020

Tonight's picture was taken in February of 2009. We literally took Mattie's creation of Mr. Sun, and transposed a photo of him into the center of it.  

Mr. Sun was created on November 8, 2008. Mattie was invited to his art teacher's gallery. He spent the entire day there and after which this amazing painting was produced. This painting hangs in our dining room, and it served as the inspiration for Mattie Miracle's logo. 


Quote of the day: Bundy continued targeting female students in the area. He developed a technique: approaching women while wearing a cast or appearing otherwise disabled and asking them to help him put something in his car. ~ Gabe Paoletti


I remember when I was a child, my grandmother would always say to me before leaving the house..... don't talk to strangers and don't get near anyone's car!
She didn't just say this to me once, she said it daily for years! Even when I was in high school. Of course, as a child, I thought my grandmother was an alarmist and just being paranoid. But this weekend, I started watching the HLN (headline news by day and mysteries and investigations by night) series How It Really Happened Ted Bundy Special. Given that this serial killer's case went on for ten years, I now completely understand the context of how my grandmother viewed the world.

Theodore Robert Bundy was an American serial killer who kidnapped, raped, and murdered numerous young women and girls during the 1970's and possibly earlier. After more than a decade of denials, before his execution in 1989 he confessed to 30 homicides that he committed in seven states between 1974 and 1978. The true number of victims is unknown and possibly higher.

I am not sure why Peter and I find this series fascinating but we have been glued to each episode. Part of me feels like we can't understand such evil and therefore we want to understand how on earth the creation of such a monster could be possible. I am not sure there is an answer and frankly I don't care how mixed up he was growing up (thinking his mom was his sister and his grandfather beating him), because there is no acceptable explanation for such brutality and disregard for life. 

Part of the series focuses on Elizabeth, his actual girlfriend. Though she describes him as warm and loving, she did report him to the police twice, because she feared he could be responsible for the murders. Ted Bundy destroyed the lives of families and friends, and clearly people interviewed today continued to be profoundly affected by his evil. 

Ted Bundy was well put together, bright, well spoken, and engaging. Not the typical account of a serial killer, which is how he escaped the law for ten years. His horrific life reminds us that we can't judge a book by its cover. 

How It Really Happened Ted Bundy Special - Trailer:


February 8, 2020

Saturday, February 8, 2020

Saturday, February 8, 2020

Tonight's picture was sent to me by our Facebook friend, Tim. Tim lives in Arizona and we have never met him. Yet he creates beautiful photo creations and collages for hundreds of bereaved parents of children with cancer. He doesn't get paid, instead he does this on his own time and with his own resources. Over the years, I have learned that Tim is a volunteer at his local children's hospital and he has an only child of his own. A son, that reminds him of Mattie. 

I love this collage of Mattie! It is Mattie pre-cancer and Mattie after diagnosis. Despite the disease and its ramifications on him, the beauty of Mattie's face and smile didn't change. 




Quote of the day: Tell me and I forget. Teach me and I remember. Involve me and I learn. ~ Benjamin Franklin


I absolutely relate to Benjamin Franklin's quote. I happen to love to learn about subject areas that interest me and of course I am always intrigued by people. However, the ultimate way I learn is to 'involve me.' I appreciate hands on learning, because when I can apply concepts and theories, they come alive to me and I remember them. Back when I was in graduate school to become a professional mental health counselor, my faculty members did not educate me on the licensure process or its importance for that matter. This was something I had to figure out on my own. To become a licensed professional, besides applying and qualifying, you have to familiarize yourself with your state's laws and regulations. Again, it is one thing to read them, and quite another to have the ability to apply them on a monthly basis. Which is why I believe every professional should have the opportunity to serve on a licensure board at some point in their career. 

Which brings me to what I did today. I was appointed a while back to a DC licensing board. Today board members (from 166 boards) were asked to come in for an ethics training. It's a Saturday and as such, you would think people wouldn't want to be there and that they would not be engaged in a weekend training. I didn't observe any of that. People were genuinely happy to be there and to serve in their position. That caught my attention. It also helped that the staff were lovely and they were respectful of our time. 

When I was appointed to the board, the Mayor's Office of Talent and Appointments (MOTA) did not exist. It was created under Muriel Bowser and it was helpful today to learn more about the office, what it does, and how board members can turn to this office for assistance.

Why does DC or any state for that matter need boards? Because boards provide guidance to the city/state. Licensing and regulatory boards have members with professional and personal expertise in a particular subject matter, and help to develop standards for licensed professions. Boards may also establish regulatory standards for professions and agencies.


I am not a big Valentine's Day person, but check out this postcard Peter and I got in the mail. It is from Union College, where we met! In all the years we have been married, we never received a Valentine's postcard!
How sweet it is to be loved by U. A great play on words, because it truly implies that the love goes both ways.... meaning that Union College loves us and we love Union College. Either case, after all these years, it is nice that they are aware of the fact that two of their graduates met on campus, fell in love, and remain married. 

February 7, 2020

Friday, February 7, 2020

Friday, February 7, 2020

Tonight's picture was taken on February 6, 2009. You maybe asking yourself, what was going on here?! This was a physical therapy (PT) session! Yes indeed, PT with Mattie was never boring. Thankfully Anna (Mattie's PT) learned quickly that she had to think outside the box with Mattie. In this line up, was Mattie, Jenny (one of Mattie's art therapists), Denise (Mattie's social worker), Jessie (one of Mattie's art therapists) and a PT intern. All of them were participating in Mattie's session. Getting Mattie out of his wheelchair and taking a few steps took a herculean effort. Having an entourage to cheer on Mattie made a huge difference in his level of participation. 


Quote of the day: I cannot give you the formula for success, but I can give you the formula for failure, which is: Try to please everybody. ~ Herbert B. Swope


Today I had the opportunity to chat with a woman who entered a doctoral program but never completed it. She didn't because she had issues with her advisor. Issues that apparently others also had with this person. Apparently the issues were so stressful that she reported her advisor to the department chair and the dean. Mind you this is a bright, tenacious, and creative woman we are talking about, so her walking away from her degree wasn't a personality flaw. 

Unfortunately there are many, many other students like this woman who never get a Ph.D. Completing a Ph.D. program is not easy. My joke at the time was if I ever finished and obtained my doctorate, I was going to go on Oprah to share the hazing, belittling, and total lack of control a doctoral student has over his/her life! Certainly to obtain a Ph.D., you have to be bright, curious, and have the passion to pursue knowledge and contribute to research. However, these qualities are NOT what will get you through a program. On the contrary, for me personally, I found what got me through was being humble, the ability to work with difficult people, and to assess what I needed to do to please my advisor and dissertation committee. Unlike tonight's quote, the formula for success to obtain a doctoral degree is to please everyone! In fact, if you don't please your research committee, you could get stymied for years or even fail your dissertation defense! I saw that happen three times when I was in graduate school. 

The whole conversation I had today, reminded me that when I did complete my doctorate degree in 2003, I started offering how-to sessions at professional conferences. Tricks that I learned to help other struggling Ph.D. students! These sessions were always VERY popular. So much so, that students asked me and my mentors to write a book. Which we did (see the link below, the editors dedicated the book to me and Mattie). Unfortunately while we were writing, Mattie got diagnosed with cancer. Therefore I did not have the time to be an editor, only an author. I may have left this part of my life behind, as I now focus on childhood cancer, but the ordeal, hoops, and hurdles I had to jump through to get a Ph.D. will never be forgotten. 



http://www.universityreaders.com/pdf/Selecting-and-Surviving-a-Doctoral-Program-in-Counseling_sneak_preview.pdf

February 6, 2020

Thursday, February 6, 2020

Thursday, February 6, 2020

Tonight's picture was taken on February 10, 2009. Mattie was home between treatments and trying hard to take a few steps with his posterior walker. Truly Mattie was very brave, courageous, and a fighter. Given the intense pain he was in, it truly was remarkable that he even complied with our request to use his legs and try to walk. Of course back then, our goal was for a cure and to get Mattie back to his pre-cancer life. However, now I know more, because even if he had survived, he would have faced a lifetime of physical and mental health consequences. 





Quote of the day: We’re no longer on a cruise. Those days are gone. ~  David Abel (passenger on the Diamond Princess)


No matter what country you are living in, the coronavirus means something to you. This week, thousands of passengers abroad a Princess Cruise in Japan were quarantined. Quarantined for two weeks mind you! That may not sound so bad, as we all have visions of cruising as having access to non-stop food, entertainment, and excitement. True, under normal circumstances. But this is far from normal. 
The cruise ship, the Diamond Princess, with a total of about 3,700 people on board, arrived in Yokohama on Monday night after a 14-day trip to Southeast Asia. Passengers and crew have been forced to stay on the vessel since an 80-year-old Hong Kong man who disembarked last month tested positive for the virus.

Are you getting this? This 80 year old passenger was NOT on this current cruise. He was on a previous cruise and yet the virus lingered on the ship and the next set of passengers voyaging on the ship contracted the disease. Imagine going on vacation, being away for two weeks and then on your last vacation day you learn that you aren't returning home! Instead, you have to remain on board the ship (confined to your room) for another two weeks. Which equates to a non-planned month away from home. 

Having just gotten back from a Christmas cruise and being very familiar with Princess Ships, I can't imagine being isolated to a cabin room for two weeks. I feel for all the passengers with inside cabins, those traveling with small children, and those who need medications for daily living. Fortunately I read that Princess Cruises has risen to the occasion and is filling all prescriptions for free for passengers. Passengers are getting free phone and wifi services and now meals are steadily being delivered to passenger cabins. But it sounds like the first day or so, meal service wasn't consistent. Makes me think that I may need to travel with back up food when going on a cruise. A thought that would have never crossed my mind before this incident!

Here is a Time Magazine video interview with an American Couple aboard the Diamond Princess (click on the photo below).



Interview with David Abel (British Citizen). Take note that they are in a mini-suite. Regular cabin rooms are much smaller! Click on the photo below to see the video. 



Princess Cruises Notices:
https://www.princess.com/news/notices_and_advisories/notices/diamond-princess-update.html

February 5, 2020

Wednesday, February 5, 2020

Wednesday, February 5, 2020

Tonight's picture was taken in February of 2009. Mattie was home between hospital visits and as you can see he had built a volcano and watched it erupt. Mattie loved hands on learning and one of his favorite places to play was on the floor between our dining and living rooms. So many things were created there, both pre-cancer and after Mattie was diagnosed. Given how Mattie was feeling, it was remarkable that he could play and was interested in building and creating. I am not sure an adult experiencing the same physical and emotional issues as Mattie would have been as determined and brave. 



Quote of the day: Your self-esteem won’t come from body parts. You need to step away from the mirror every once in a while, and look for another reflection, like the one in the eyes of the people who love you and admire you. ~ Stacy London


I can say that I endured a Super Bowl party. I put it that way because football and all sports for that matter are not high on my interests list. Certainly if the NFL were counting on me, then they'd have a big problem. As I wouldn't condone the extraordinarily large salaries, high ticket prices, or let's talk about the price of airing a commercial during the Super Bowl. I just don't get it! 

With that said, the only part of the Super Bowl that I watch is the half time show. But even that I could do without! I caveat what I am saying, by sharing that I do not care for floor shows, which is what the half time show is, that 
involve lewd and crude body movements, not to mention women who are scantily clad. Those who saw the half time show know that it was performed by  
Jennifer Lopez and Shakira. Well that is if you focused on them at all, since there was a light show, thousands of people performing and standing all around them, fireworks, and many other distractions going on at the same time on stage. 

I know there is all sorts of commentary on social media about this show. For the most part people LOVED it, and then there were the rest of us. Who find the whole thing offensive and wonder why an American event, that should be family oriented, agrees to host such a show. In fact at the party I attended, there was a little girl who was 8 years old. Her parents allowed her to watch the half time show and as she was watching, she was emulating what the performers were doing.... which was she raised her shirt way up so that we could see her stomach and rib cage. I made a mental note of that. 

But what caught my attention was that the women around me had plenty to say while watching these women performers. They commented about how fat and unattractive they felt in comparison to Jessica Lopez and Shakira. You wonder why our society has body image issues and eating disorders? Look no further than our media who sexualizes and portrays women in unnatural ways. Honestly I heard so much negative commentary during the show, that I had to say something. What I said was they can't compare themselves to these women, as we don't know what the performers have done or continue to do to themselves to look this way. Which means surgeries, medications, personal trainers, make up and hair artists and the list goes on. It is a ridiculous and unequal comparison..... which left me questioning the nature of the whole half time show. 

Why create a show that is inappropriate for young children and elicits negative body images for those watching the show? I know the answer of course, sex sells. In the future, I am better off NOT watching the show as it provides me no pleasure, but only irritation.  

February 4, 2020

Tuesday, February 4, 2020

Tuesday, February 4, 2020 -- Mattie died 540 weeks ago today. 

Tonight's picture was taken on February 6, 2009. You will notice a cup and straw near Mattie. What was in it? Try a vanilla shake. Mattie had cravings for different things while on chemo, and the vanilla shake was a favorite. Since cancer left Mattie emaciated, I was thrilled for him to have the calories. But how about that colorful thing in front of Mattie. Well that was a volcano he made that day in the child life playroom. It wasn't only colorful, but we actually got to see a small eruption come from the mouth of the volcano. 

Quote of the day: The Centers for Disease Control says that there are 76 million cases of food poisoning in the United States every year, 350,000 hospitalizations, and 5,000 deaths. Is that a lot or a little? Well, it depends on how you look at it. Marion Nestle


Peter has been sick since Sunday night with food poisoning. Being ill like that is debilitating and he was also running a fever for two days. Slowly he is regaining his strength. 

Since it was 60 degrees in Washington, DC today, we took Sunny for a walk at Scott Run in McLean, VA. A park that Mattie used to love to explore!  
Sunny also went to get groomed today! So he looks VERY handsome. He wasn't particularly interested in getting his photo taken, but he complied. He was more focused on exploring the woods. 
This is a sight we passed many times with Mattie. Mattie loved it mainly because there were stepping stones to get from one side to the other. 
See the stepping stones with Peter and Sunny on the other side? Sunny refuses to walk on the stones, but instead goes right through the water! Needless to say, Sunny loved it and Peter was able to get out and get fresh air. 

February 3, 2020

Monday, February 3, 2020

Monday, February 3, 2020

Tonight's picture was taken on February 4, 2009. You maybe asking yourself, what in the world was happening here? What was happening was a physical therapy session for Mattie. Ironically, Mattie wasn't the one doing the physical therapy! Instead, he had me and Anna (his physical therapist) down on the floor. Mattie wanted us first to do the activity (Twister) before he'd try it! This wasn't an unusual request from Mattie, as I was used to being the guinea pig! But Anna was a good sport that day, as we both took direction from Mattie and played along. To me it was very important to be part of the process and for Mattie to know that I wasn't going to ask him to do anything I wouldn't do myself. 


Quote of the day: Have you ever found yourself, in the midst of unimaginable grief, pain, heartache, or despair, wondering how you are going to make it through another day? Wondering where your next breath is going to come from? Your world has crumbled beneath you and has left you feeling shattered, empty, and hopeless. And then a well meaning friend or family member comes along and drops the infamous “Everything happens for a reason” bomb. You smile kindly and nod. That’s all you can do to keep yourself from punching them in the face. ~ Christine Suhan


Last night Peter and I went to a Super Bowl party. It was an interesting experience because I would say only about a third of us did not want to see the game. This third landed up chatting and eating, while others watched the game in a different room. While talking with some of the women, one woman told us that "everything happens for a reason." I listened to the context she was using this trite saying and I certainly appreciated what she was saying/sharing. But to me this is a platitude that needs to be shot down and shot down quickly. Because in all reality there are horrible things that people experience, have to live with, and also have to find ways to move forward while carrying such emotional baggage. Frankly there is NO GOOD POSSIBLE REASON to explain away the horrors that happen to us. 

People use this expression when bad things happen to us. I am not sure who they think this saying helps, but chances are it isn't the recipient. I told this woman, as it related to me, that I did not need to lose Mattie to cancer in order to know the importance of helping other people. Long before Mattie got cancer, I chose a profession that helps people and I even got a license to do just that. So I did not need to see my six year old struggling through cancer treatment and then die in a horrific manner to become a compassionate and charitable person. Unfortunately there is NO OTHER way to interpret..... things happen for a reason! There are no good reasons and instead, we need to eliminate this nonsense from our lexicon. 

The following article caught my attention, Let Go Of The Myth That Everything Happens For A Reason: Try This Instead.... Failure and loss are inevitable, but trying to rationalize them can be the last thing you need to do. In particular these two excerpts from the article I found most poignant....................

But, I've always found it profoundly unsettling and extraordinarily selfish to believe that the sole purpose of life's heartaches, failures, losses, illnesses, and assorted derailments is to teach us some fateful lesson that we have been preordained to learn. A failed business, a severe illness, divorce, the loss of a loved one, dashed dreams, natural disasters, each is excruciating in its own unique way. But, the idea that life's unfairness is somehow supposed to be justified by a scripted reason is to me the ultimate abdication of accountability; hell, why mince words, it's outright lazy. 
Its' About Creating Meaning, Not Finding Reason................When my mother struggled for nearly a decade with a horrid disease that robbed her of mobility and cognition one synapse at a time I repeatedly tried to tell myself that there was a reason. Otherwise all of that pain and suffering was for nothing. Each time I'd have that thought I'd then look at her and think, "Whatever I may be learning about the fragility and value of life, how could I possibly justify a reason for her pain?" Was the world created with reasons to teach me lessons at the expense of someone else's suffering? What I realized was that it didn't happen for some predetermined prescriptive reason. Instead it was my responsibility to create something much more important than a reason--I had to create meaning


The author of this article and I are on the same wavelength. In fact, I pushed  back on this woman last night who used this trite saying with me and instead I told her that there are no good reasons for why bad things happen. The best we can do, as we try to move forward and live with them, is to find meaning from these bad experiences. Which I believe is what Mattie Miracle is all about. Peter and I have no reasons to explain why Mattie was diagnosed with cancer. But from Mattie's battle we learned that childhood cancer is not just about the medicine. We take that lesson with us each day as we try to create meaning from Mattie's suffering by helping other children and families. 

It's not about reason, it's about meaning! I love it!!!

Let Go Of The Myth That Everything Happens For A Reason: Try This Instead.....Failure and loss are inevitable, but trying to rationalize them can be the last thing you need to do:

https://www.inc.com/thomas-koulopoulos/its-time-to-say-it-everything-does-not-happen-for-a-reason.html