Saturday, October 31, 2020

Saturday, October 31, 2020

Tonight's picture was taken in October of 2005. That year, Mattie wanted to be a calico cat for Halloween. Not unlike his own cat, Patches. We bought a black sweat suit (Mattie's ideal material) and then went to the craft store to buy felt. We cut the patches and hot glued them to the material. I made a cat tail out of black stockings and added furry ears to a headband of mine. Mattie loved this costume. He was eager to wear it to preschool and trick or treating. Except that year, Mattie landed up in the hospital from an ear infection that turned to sepsis. This was thanks to his pediatrician not taking me seriously when I brought Mattie to her office just days before saying that I suspected he had an ear infection. She thought I was being over protective and a hypochondriac. Turns out, I was right, and when she saw us admitted to the hospital, she apologized for her mistake! Any case, that year, Mattie spent Halloween in the hospital. It was a hospital that did not have a peds unit or child life specialists. So literally the nurses did not know what to do with Mattie or me for that matter. In a way, it was my first real experience having to advocate for Mattie in a hospital setting. Skills that were definitely needed three years later when Mattie was diagnosed with cancer. 

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

• number of people diagnosed with the virus: 9,104,336
• number of people who died from the virus: 230,281

Every two years, in order to renew my professional counseling license, I need to complete 40 hours of continuing education. Typically I can get these hours by attending conferences, but clearly that wasn't happening this year. Therefore, I have been glued to on-line trainings. Today, I finally completed a 12.5 hour training, entitled, Certified Clinical Trauma Professional (CCTP) Intensive Training Course.

I have to admit, for me learning on-line doesn't work as well as face to face. Nonetheless, it was an intense course that provided students with a ton of information, research, insights, and interventions. They instructors ended the training with Viktor Frankl's quote...... Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and freedom. 

This is an illustration of Frankl's beautiful and meaningful words. Honestly, this was a fantastic way to end a very comprehensive training. Because at the end of the day, this quote or illustration is empowering to all of us. 

Whether we are stressed out, feeling depressed or traumatized..... this reminds us that WE ARE IN CONTROL. We can't control stressors, what happens to us, or when it happens to us. But we can choose how we wish to respond to these stressors. Our decision on how we respond needs to be thoughtful, because if we are reactive rather than intentional, what happens is we aren't true to ourselves. We lose integrity and our guiding principles. 

One of the instructors today, flashed this slide up on the screen. It is his illustration of trauma and how it impacts how we act, behave, and feel. This illustration practically jumped off the page at me, because I feel it described me at various stages after Mattie's death. As the slide illustrates, there are many triggers in our lives. Mostly they come in through one of our senses. Typically when stressed we are not calm, and therefore not thinking clearly. So we become reactionary. In this mode, we can become impatient, nasty at times, and even resentful of our situation and those around us. However, stepping back, learning relaxation techniques that enable us to switch from reactionary to intentional, enables us to THINK and therefore respond to stressors in ways that are in line with our vision about how we want to life our lives.  

After Mattie died, things would set me off and I would be very reactive to friends. Historically this wasn't my typical style in relating to people. It was out of character for me. Which was also upsetting to me, because after lashing out at friends, some of them would lash back out at me. Needless to say, I found their reactions hurtful and it was a vicious cycle... of me being reactionary to friends, they were reactionary back at me, and really it propagated a vicious cycle of hurt. Now that I see this model, I realize that my reactionary style was how I was coping with trauma. Seems to me this is the number one piece of educational information EVERY person (not just professionals) should know when trying to support a trauma survivor or bereaved individual. We have pent up thoughts, feelings, and emotions and that energy is volatile. So naturally it makes sense that it would be expressed in inappropriate ways. That doesn't mean we give up on those who are traumatized or bereaved (though I admit we can be wearing on friends because the healing process takes time and support), rather it means we need to find ways to help us relax and breathe, and take back control so we can think and make decisions that are true to how we wish to live our lives. 

Friday, October 30, 2020

Friday, October 30, 2020

Tonight's picture was taken on Halloween of 2004. Mattie was two and a half years old and was definitely into the spirit of Halloween. As you can see, Mattie's costume was really a sweat suit. Which made it the perfect material and outfit for Mattie. I thought Mattie made the cutest Pooh! Winnie the Pooh was a favorite to both of us, and together we must have read every Pooh story out there. While driving through Georgetown today, we passed an elementary school which was having a Halloween costume parade. It instantaneously took me back in time to when Mattie's kindergarten class had a Halloween parade. I thought we would have MANY MORE parades together. 

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

• number of people diagnosed with the virus: 9,015,262
• number of people who died from the virus: 229,293

This is Adina, our child life specialist at Children's Hospital at Sinai in Baltimore, MD. Each year, Adina takes it upon herself to make up trick or treat goodie bags for the children and their families in all the pediatric units. Where does the candy come from? It comes from Mattie Miracle! We are grateful for Adina's initiative and passion to meet the psychosocial needs of families, and for her idea to package up our candy in this creative way. 

This is all Adina's doing! However, having been stuck in a hospital for all major holidays, I know how a bag of candy can feel like winning the lottery. 

Which is why our Post Halloween Candy Drive is so important. It provides our hospitals, that we support, with a year's worth of candy! 

I love Adina's cowgirl costume! She is a ray of sunshine and I have no doubt she brightened up the lives of many families today. 

Items are piling up in Mattie's bedroom from the Candy and Snack Drive. Please check out our Amazon Wish List, and help support our candy drive! It is easy! All items should be shipping to the "Ali Goldwater Gift Registry" address! THANK YOU!

www.mattiemiracle.com/events

Thursday, October 29, 2020

Thursday, October 29, 2020

Tonight's picture was taken in October of 2003. Mattie was one and a half years old and was beginning to understand the concept of Halloween. At least that people dressed up for the occasion, however, costumes and Mattie did not go well together. Mattie did not like being constrained, he did not like things on his head, and he disliked anything that made him feel itchy. One day, I took Mattie to Target (Mattie had two favorite stores we could take him to..... Home Depot/Lowes or Target) and put him in the shopping cart. We wheeled around together looking through the store. Then I spotted these cute pumpkin sweat suits. The perfect material for Mattie, and I am so glad I captured that moment in time. 

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

• number of people diagnosed with the virus: 8,922,632
• number of people who died from the virus: 228,370

My lifetime friend, Karen, sent me this text message today! It featured this charming photo of penguins and the posting on social media that was attached to the photos. I am not surprised Karen sent this to me, as she knows I love animals, but I am also intrigued by grief and how each of us and animals express it. 

Just like me, Karen, also knows that not everything you read about on social media is legitimate. So I told her I would investigate the story behind it. These are such splendid photos, that one could think at first that they were contrived or staged. However, it turns out from just doing a simple Google search on these photos, that many different organizations published the story about the photographer and his incredible photos.  

So what is this a photograph of? These two Fairy Penguins (type of penguin, smaller in stature) were poised upon a rock overlooking the Melbourne skyline. The were standing there for hours, flipper in flipper, watching the sparkling lights of the skyline and ocean. A volunteer approached the photographer and told him that the white one was an elderly lady who had lost her partner and apparently so did the younger male to the left. Photographer Tobias Baumgaertner snapped the touching moment in St Kilda, a suburb of Melbourne, Australia, in 2019, but only recently shared the images on Instagram.

The photographer had this to say about the penguins.....

"The way that these two lovebirds were caring for one another stood out from the entire colony. While all the other penguins were sleeping or running around, those two seemed to just stand there and enjoy every second they had together, holding each other in their flippers and talking about penguin stuff.

Pain has brought them together. I guess sometimes you find love when you least expect it. It's a privilege to truly love someone, paradisiacal when they love you back."

One may read the photographer's commentary and say..... how sweet, or HOW DO YOU REALLY KNOW WHAT IS GOING ON HERE? The thing is that scientists have and continue to study different species and how these animals respond to grief. The elephant for example is a remarkable creature and the herd will not leave a dying elephant until it is dead. The mourning process involves a lot of standing around (not unlike our human wakes), they use their trunks to inspect every part of the body, and elephants do not leave the side of their dead loved one for days. 

I saw our cat Patches experience the loss of Mattie. After Mattie died, Patches slept on Mattie's bed and basically spent her days in his room. Something she never did before when Mattie was alive. I also observed our neighbor's dog, JJ, who came to our front door every day for months. Waiting to see his friend. JJ even slept with one of Mattie's sandals. Having these personal experiences enables me to believe the beauty and sentiment captured in these photos of these two penguins left behind. It is hard to be a survivor, knowing that the one you loved most in life is gone. How do you go on? As our penguin friends illustrate in such a meaningful way, you turn to nature and to others for comfort, re-connection to the world, and to be understood. A lesson that is too precious to forget and should guide us in our every day lives.

Wednesday, October 28, 2020

Wednesday, October 28, 2020

Tonight's picture was taken in October of 2002. This was Mattie's first Halloween. Of course he was only six months old, so he wasn't going trick or treating, or wearing a costume. However, even at that young age, Mattie loved pumpkins. Not sure if it was the color (which was a favorite of Mattie's), its size, shape, or texture. Nonetheless, Mattie LOVED everything pumpkin. 

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

• number of people diagnosed with the virus: 8,837,688
• number of people who died from the virus: 227,421

The polls in the District of Columbia opened yesterday. So today, we got up early and met neighbors at 7:45am. Together we all walked about a half of a mile to our polling center. Mornings are not my favorite time of the day, but I was fearing LONG lines and chaos. So when our neighbor suggested getting to the polling site before it opened up, we agreed. 

We have many neighbors around us who have lived in our complex since the 1970s! Of course as we age, completing certain tasks and maneuvering around the city can become more challenging. Which is why neighbors wanted to come with us today. We could handle the directions, the logistics, and also manage any sort of safety concerns that could arise. Unfortunately in the District, safety has become an alarming issue on all of our minds. Therefore, there is more security when traveling together. 

Last night, I literally pulled out a sample ballot and started doing research on each of the positions and the proposed proposition on the selling and distribution of marijuana. Needless to say, I literally looked up each local candidate running, read about them, their positions, and their platforms. Fortunately I did, because our neighbors had lots of questions this morning and I could easily pull up candidate webpages, because I had them open on my phone. I was a walking fountain of knowledge. 

Needless to say, by the time we got to our polling center, we were the third in line. There were NO LINE (even when we left), everything was very organized, the polling folks were lovely and friendly, and it had to be the smoothest voting process I have ever seen. I even got to see my ballot scanned and counted!  

Tuesday, October 27, 2020

Tuesday, October 27, 2020 -- Mattie died 578 weeks ago today. 

Tonight's picture was taken in October of 2008. Mattie was visiting his friend Campbell and as you can see they were enjoying Halloween cookies together. At that point in time, it was before Mattie had any of his limb salvaging surgeries. Meaning that from an emotional standpoint, Mattie was doing well. Or as well as one could expect being diagnosed with cancer and on treatment. During that time period, Mattie was still able to visit with friends and enjoy this social experience. Which is why I am happy such photos were captured. Because as Mattie's treatment continued to unfold, he became more traumatized, more guarded, and preferred isolation. 

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

• number of people diagnosed with the virus: 8,759,939
• number of people who died from the virus: 226,436

I spent a part of today, continuing the trauma certification course I signed up for to obtain continuing education units for my professional license. This course if 12.5 hours long, and I have about two hours left. I would say that it has definitely opened up my mind to the physiological component of trauma and why trauma work must involve learning to regulate one's body. I think many of us who have experienced trauma believe that we are still traumatized. But the course has shown me that I have really integrated the trauma into my life's narrative, but that doesn't mean I am actively traumatized now. I am still wrapping my head around the biological nature of trauma and the evidence based methods to support survivors of trauma. Within today's discussion was a non-evidence based (or pseudoscience method if you will) technique presented to us called, Thought Field Therapy (TFT). Like this photo indicates, it involves tapping the body in sequences. 

Thought Field Therapy is an energy-based form of psychotherapy designed to reduce symptoms of psychological distress by manipulating how energy flows in the body. TFT is based on the premise that bodies consist of energy fields and that imbalances in this system cause physical and emotional issues. It is thought imbalances can be corrected by finger tapping specific energy points in certain sequences in order to restore an individual's health and wellness. Some claim TFT produces rapid, lasting results in the treatment of various psychological conditions, including phobias, addictions, anxiety, trauma, and depression.

Thought Field Therapy was developed by American psychologist Roger Callahan. Combining modern psychotherapy and Eastern tradition, it draws heavily on ancient Chinese medical practices including acupressure and acupuncture, which emphasize the presence of an internal energy system. These healing methods are based on the idea that energy flows along a network of pathways in the body and that blockages in the system result in physical illness. Each pathway, also called a "meridian," involves its own set of internal organs and ends at a specific point on the skin's surface. Stimulating meridian end points by applying pressure (acupressure) or inserting needles (acupuncture) is believed to remove blockages, restoring a normal flow of energy, and by extension, physical health. In TFT, Callahan adapts and extends these Eastern principles to the treatment of psychological issues.

Needless to say, the course's trainer (who is deemed an expert in trauma therapy), walked us through Callahan's model today. He literally had us focus on something that is distressful (and score it on a scale of 1-10), then we began rhythmically tapping parts of our body (near eyebrow, cheekbone, under arm, and collarbone area). After that tapping, came tapping on the "gamut point." Which is between the ring finger and pinky. While tapping there, simultaneously we had to look up, down, to the left, right, eye going clockwise, counterclockwise, we had to hum, count out loud and hum again. When all this was over, we were asked to rate our distress level on the same issue we presented with. The majority of the class had a steep decline in their distress level. 

Where do I stand on this? The few studies that have been published to demonstrate the efficacy of TFT, including some by Callahan, have been criticized for methodological flaws, such as the lack of control groups, standardized assessment tools, and unsatisfactory reporting of data. Additionally, no credible research to date supports the underlying mechanism of TFT, namely the existence of human energy fields that influence psychological health and can be manipulated by finger tapping. There is also no empirical support for the diagnostic methods used in TFT. That said, the trainer swears by this technique for himself and uses it with his clients. Though he explains to clients that this isn't evidence based, but it has been antidotally reported to be helpful for clients with anxiety and when working with trauma. 

Clearly, if something so simple and non-invasive works for some people, then I think that is great. Why not use it. But for myself, I was becoming irritated with the whole notion of tapping, and I was simply a student in a virtual classroom. I can't imagine coming in for therapy, managing a trauma, and being presented with this tapping technique. What I am finding with this entire trauma course, is I have to remain open minded, because I use my experience with Mattie as the benchmark against all content presented to me. Childhood cancer is a complex example to bring into this class, because it isn't made up of a single event. It is rather an on-going trauma, that frankly continued for the first several years after Mattie died. The instructor says that people can't claim to still be traumatized if they are able to sleep. That maybe true, but then again, many of us who have survived trauma have sleep issues and resort to talking to our doctors about sleep aids to cope. So again, I am not sure some of these cute quips of guidance he provides his students are truly on target or meaningful.  

Any case, I found this video on YouTube about what TFT looks like. You can see the tapping for yourself and come to your own conclusions. 

Monday, October 26, 2020

Monday, October 26, 2020

Tonight's picture was taken on October 15, 2008. Mattie was three months into treatment. In September of that year, Mattie met Brandon. Brandon is the fellow you see sitting next to Mattie. There was about a 10 year age difference between these two friends, yet that did not matter. They were the "best" of friends and even when Brandon's cancer went into remission, he came back to the hospital quite often to visit with Mattie. Mind you Brandon lived about 90 minutes away from the hospital. So that was a big commitment. Mattie loved to build things and that day Mattie and Brandon worked together on a popsicle stick structure. I would have to say that I learned a lot about friendship from observing these two amazing fellows. 

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

• number of people diagnosed with the virus: 8,679,483
• number of people who died from the virus: 225,495

This morning Peter and I had a conference call with one of the early investigator researchers we are funding through Mattie Miracle. We granted this researcher $20,000 and with these funds she generated data that is so rich and significant, that she is now applying for a Research Project Grant (R01). R01 is the original and historically oldest grant mechanism used by National Institutes of Health (NIH). As this researcher said this morning, she would never have qualified for this multi-site random controlled psychosocial study grant (through NIH) without the data generated through our grants. Which is very exciting news. We will feature an update from this researcher in our January newsletter. However, of the 12 studies we have funded so far, two of them helped early investigator researchers qualify for NIH R01 grants. Amazing, no? 

Mattie Miracle grants are advancing the evidence based psychosocial research, they are helping to implement our Psychosocial Standards of Care, and most importantly they are getting us one step closer to optimizing supportive care to children with cancer and their families. 

Our Foundation's October e-newsletter went out today. This newsletter is distributed to 2,000 people. If you aren't receiving our newsletters, and want to, please send us a note to sign up: admin@mattiemiracle.com

If you would like to see our archived newsletters, please visit us at:

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Sunday, October 25, 2020

Sunday, October 25, 2020

Tonight's picture was taken on October 13, 2008. Mattie was admitted to the hospital for treatment that day. I can tell because Mattie was wearing clothes. Mattie only wore clothes when he was coming from home. Otherwise, when hospitalized Mattie chose to wear pajamas. In any case, the playroom was closed that day because a major donation was given to the hospital. Mattie's child life specialist, Linda, was trying to sort through everything and store the items. She invited Mattie into the room to help. Linda understood that Mattie needed to stay busy and have responsibility. They were good pals and Linda made the impossible seem much more bearable. 

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

• number of people diagnosed with the virus: 8,626,537
• number of people who died from the virus: 225,197

The beauty of having a dog, is a bit like the postal service.... you need to walk in rain, sleet, snow, and sun. Unlike yesterday, today was damp, rainy, and bordering on raw. The highlight of our days is taking Sunny for his longer afternoon walk. Mind you he walks FOUR times a day. But his afternoon walk ranges from 2 to 3 miles. As you can see, the foliage is changing and reminds us that winter is coming. 

When we arrived at Great Falls Park, we were greeted by this grazing deer. This deer could have cared less that we were watching her. She kept on grazing and did not move!

Sunny loves adventure! Mattie would have loved him. Sunny has no problem walking on trails, climbing rocks, and exploring. Sunny was on top of the world today!

The beauty of Great Falls, even in the rain. 

Despite the cold and rain, there were plenty of others walking the trails. For so many of us, our parks are a God sent especially during COVID.