Saturday, February 22, 2020

Saturday, February 22, 2020

Tonight's picture was taken on February 17, 2003. Mattie was 10 months old and learning to stand by holding onto things. That day, my parents sent Mattie this entertainment table. Like with any new thing, Mattie proceeded with caution. However, in time, he loved to push the buttons and keys and to have us sing along with his musical table. 


Quote of the day: With ordinary talent and extraordinary perseverance, all things are attainable. ~ Thomas Fowell Buxton

My mom sent me an article entitled, What Makes Dogs So Special? I posted the link below. However, all I have to do is look at Sunny's face, and I know the answer! Maybe because I fell in love with his face on Facebook, without ever meeting him in person! The simple one word answer is LOVE. Dogs provide their owners an incredible bond and love that is unique and special. 

The article highlighted three things that caught my attention:

1. One of the most striking advances comes from studies regarding oxytocin, a brain chemical that cements emotional bonds between people, but which is, according to new evidence, also responsible for interspecies relationships between dogs and humans. Levels of the chemical spike when humans and their dogs gaze into each others' eyes, mirroring an effect observed between mothers and babies.
2. In genetics, UCLA geneticist Bridgett vonHoldt made a surprising discovery in 2009: Dogs have a mutation in the gene responsible for Williams syndrome in humans—a condition characterized by intellectual limitations and exceptional gregariousness. "The essential thing about dogs, as for people with Williams syndrome, is a desire to form close connections, to have warm personal relationships—to love and be loved.
3. In one behavioral study, researchers using a rope to pull open the front door of a dog's home and placing a bowl of food at an equal distance to its owner, found that the animals overwhelmingly went to their human first. Magnetic resonance imaging has drilled down on the neuroscience, showing that dogs' brains respond to praise as much or even more than food.

What I do know is that Sunny has added a special dimension to our home. After all, after Mattie died, our home was absolutely transformed. It became quiet, sad, and bordering on depressing. We will always be aware of who is missing in our lives, but Sunny keeps us moving. He keeps us engaged with him and the world. Case in point, we took Sunny for a walk today and I can't tell you how many children and adults stopped to talk with us and asked..... 'can we PET your dog?!' Clearly even strangers get a happy feeling when interacting with Sunny!

What makes dogs so special? Science says love:

https://phys.org/news/2020-02-dogs-special-science.html

Friday, February 21, 2020

Friday, February 21, 2020

Tonight's picture was taken in February of 2003. Mattie was 10 months old and very curious. If you look closely you will see Mattie's little fingers trying to get into a drawer where I keep serving utensils. Mattie was sitting in "tot wheels." Which was the cute name we gave to his walker. Mattie absolutely loved it because it gave him the freedom to move around on his own two feet. You would be amazed how Mattie would zoom around in that thing, never crashing into walls or furniture, which was remarkable. 


Quote of the day: Look at a stone cutter hammering away at his rock, perhaps a hundred times without as much as a crack showing in it. Yet at the hundred-and-first blow it will split in two, and I know it was not the last blow that did it, but all that had gone before. ~ Jacob A. Riis

Our amaryllis is blooming! Isn't it glorious. It blooms each February and sometimes it surprises us and blooms multiple times throughout the year. These flowers are short lived, so when I see them, I like to capture them. 

















March will be a busy month for me. As Peter and I are going to attend a conference in Portland, OR. Mattie Miracle is funding and hosting a symposium about the Standards at the conference. Once we return from the conference, I will be heading to Los Angeles to help my parents move. Given all of this, Peter and I have moved up the timeline for our plans for the Walk & Family Festival, so when I get back from Los Angeles, I won't be scrambling to put the raffle together and completing city permits for the Walk. 

Today we drove to Waldorf, MD to shop at the Christmas Tree Shops. This is about a 40 minute car ride each way from Washington, DC. Most of our raffle items are donated to us, but in order to organize them and display them appropriately, we need to shop for baskets and other decor items. The beauty of the Christmas Tree Shops is that you can get lots of merchandise without breaking the bank. So today, I started staging raffle baskets. 

We will have 11 raffle baskets this year and shortly all the basket descriptions will be loaded onto our Walk website. 

I love this Disney storage cube that Peter found today. The cube opens up and can store quite a bit. The cube is sturdy enough for a child to sit on it. Thanks to our annual Post-Halloween Candy drive and all the volunteers who help us, we are able to apply each year through Disney's charitable giving program. Disney rewards theme park passes to non-profits that get a significant number of volunteers together to work on a common project. Our Candy Drive enables us to qualify for free passes.  

After ten years, we decided to streamline our Walk & Family Festival logo. This is our new logo (left) for the event! The old logo is on the right. 

Our Walk website is up and operational and I encourage you to check it out, register, get involved, and help us raise funds that support our psychosocial services and initiatives. 

www.mmcfwalk.com

Thursday, February 20, 2020

Thursday, February 20, 2020

Tonight's picture was taken in February of 2004. Mattie was about two years old and that day we had a snowfall. Naturally being Washington, DC, everything came to a stand still. No school or work for example. Of course the snow did not stop Mattie. He was intrigued and wanted to be outside and playing in it. I remember those days, going outside and hating the cold, but playing along so Mattie could explore and experience winter. 







Quote of the day: Want to know where the word quarantine came from? Keep reading.......................Ships have been targets for disease control for centuries. In fact, the combination of horrifying illness and ships gives us the modern word “quarantine.” When the Black Death terrorized Europe in the 14th century, the Venetian trading colony Ragusa didn’t close itself off entirely. Instead, in 1377, the city passed new laws for visiting ships. If they came from places where the plague was spreading, they were required to stay anchored offshore for a month to prove that they weren’t carrying it. Eventually, the period was extended to 40 days and called a quarantino from the Italian word for 40. ~ Nicole Wetsman


As of now, the Diamond Princess remains the second largest place, outside of China, for the Coronavirus. In fact, 20% of passengers (over 600 passengers) contracted the virus. Experts are now saying that the ship facilitated the virus' transmission, particularly within its ventilation system. Under such a crisis, it is natural to want to blame everyone and everything. Some people are saying that Princess Cruises handled the quarantine poorly as crew members freely traveled around the ship and dispersed food trays to passengers at their cabin doors (three times a day). Exposing the crew to the virus around the ship and then of course the crew passing it along to passengers. Frankly I do not know how Princess could have managed this any better, especially when considering that  passengers were not allowed off the ship. Passengers were allowed off only if they tested positive and needed hospitalization. In International waters, Princess has to comply with the Country in question. 

If you go to the Princess website, you will see a posting of advisories for passengers from the last week. I read that Princess Cruises CEO, Jan Swartz was in Japan with a team of people. She provided updates to passengers by video and I even included a video below of her personally waving and greeting disembarking passengers. I read on-line that there was a lot of criticism for her decision to be present, as many viewed it as a PR opportunity or a way for the company to save its reputation. I am not sure I view it the same way, as this CEO is under great pressure and clearly she could have worried about her own safety first and NEVER left the USA. But like a captain of a ship, she was there while the Diamond Princess was sinking not from water but from the Coronavirus. 

I have always been intrigued by the stories aboard ships and perhaps because we are frequent Princess cruisers, I have immense sympathy and compassion for those on board. The worry, fear, and stressful living conditions had to be traumatizing. I have heard that the crew will remain in quarantine. Passengers have been reimbursed for this entire cruise and been given a certificate for a free cruise in the future. The crew continue to receive pay while quarantined and once they are cleared, will be granted their vacation time. Part of me wonders.... will any of these individuals ever go on another cruise ship again?

Advisories received on board: 
https://www.princess.com/news/notices_and_advisories/notices/diamond-princess-update.html


Princess Cruises | Diamond Princess | Update No. 2 from President Jan Swartz:

President Jan Swartz Greets Diamond Princess | Princess Cruises: (This video has received both criticism and praise! You decide!)

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/

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

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. 

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: