Saturday, December 8, 2018

Saturday, December 8, 2018

Tonight's picture was taken in December of 2003. This was Mattie's second flight to Los Angeles. We were headed to California to celebrate Christmas with my parents. A flight to LA is over 5 hours and I can assure you that Mattie was fully ON for the entire time. I had to bring a bag of tricks (books, hotwheel cars, puzzles, Legos, and activity books) to manage through the flight. We were so well prepared, that I remember on one flight, we let another family borrow some of Mattie's things to entertain their child. 


Quote of the day: Animals are reliable, many full of love, true in their affections, predictable in their actions, grateful and loyal. Difficult standards for people to live up to. ~ Alfred A. Montapert

My lifetime friend Karen sent me a charming article today about a spirited cow named Bonnie. Why? Because Karen knows I LOVE cows!!! This is a photo of Bonnie. Bonnie was born at a farm in upstate NY. When her farm owner died, all the cattle were going to be shipped off to other locations. Which would mean that Bonnie and her mom would be separated.

Bonnie had other ideas about this plan! When she was loaded onto the truck to be transferred, she instead escaped into the woods. She wasn't found, but locals in the region claimed they had occasional cow sightings. Leave it to the human race..... there were two camps of thought about Bonnie. One camp wanted to save and protect her and the other wanted to shoot her for her meat. 

However, Bonnie was befriended by a kind human who captured these wonderful photos. Bonnie was adopted by a family of deer. Despite the fact that Bonnie was a cow, the deer realized this four month old needed support. 

Though Bonnie had bonded with the deer, Bonnie is not a wild animal and unlike deer, she can't survive a winter in the wilderness. Pictured with Bonnie is Becky. Becky became Bonnie's human helper and advocate and Bonnie trusted only Becky. Becky called the Farm Sanctuary to come rescue Bonnie. But here's the thing, Bonnie wasn't trusting of humans and did not want to leave her deer family. It took a lot of coaxing, not to mention a sedative to make this happen. 


To me this is a charming story that captures the spirit of the Christmas season. It touches your heart to read about the connection of animals with one another, even when they are not the same species. That did not matter here, what mattered was this little cow needed a family. May we always remember that family can be found in unexpected places and the story of Bonnie, the deer, and Becky remind us of this important fact. They also illustrate the value in trust. With trust, anything is possible. 


Cow Who Lost Her Mom Gets Adopted By Family Of Wild Deer

They raised her for almost a YEAR:
https://www.thedodo.com/on-the-farm/baby-cow-adopted-by-wild-deer-family

Friday, December 7, 2018

Friday, December 7, 2018

Tonight's picture was taken in December of 2002. It was the first snowfall of the season, and the first snow fall in general for Mattie. We dressed Mattie up, brought out his entertainment saucer, and lined his saucer with a festive blanket. We snapped hundreds of photos that day, trying to capture the right photo of Mattie for the front of our Christmas card. This wasn't the final photo we chose, but it definitely was a priceless one!


Quote of the day: When you hold a cupcake, sorrow disappears. ~ Anonymous

The highlight of the day was going to our complex's holiday party for all residents. Peter and I have lived in the same place for 24 years and yet we never ventured to one of these holiday parties in the past. 

I am not sure I would have gone tonight either, but Peter suggested it. So I tried it. I am always VERY tentative going to parties period. Attach a party with a holiday, and that can be the recipe for a disaster for me. 

But several friends greeted us when we arrived and it put me immediately at ease. It was an evening of eating, chatting, and of course LOTS of desserts! I literally took three cupcakes. I totally agree with tonight's quote, cupcakes have a way of bringing about a smile and happiness. 

When I was a student and working at the university, I was always surrounded by holiday parties. In a way, when you work outside of your home, you can keep track of days and seasons better. After all, you hear conversations from others, you see how workplaces are decorated based on the season, and so forth. Running Mattie Miracle, I truly do not have these opportunities, nor do I seek them anymore. Which is why going to this party was special, different, festive and a totally new step for us. 

Thursday, December 6, 2018

Thursday, December 6, 2018

Tonight's picture was taken in December of 2002. We had many holiday outfits for Mattie's that year. After all it was his first Christmas. I love this photo because to me Mattie looks so happy that he could practically jump out of my arms. 




Quote of the day: I would maintain that thanks are the highest form of thought; and that gratitude is happiness doubled by wonder. ~ G.K. Chesterton

Today was the day of THREE's! Three people telling me how grateful they were to talk with me. I would have to say that receiving this feedback is more meaningful to me than getting an actual gift. But here's the thing. I did not set out to be the recipient of this nice commentary, I was just being myself. 

I know two of the people who gave me this feedback and the other person was a complete stranger. 

This is Ed. I met him this morning while walking Sunny by the Potomac River. Ed was walking a BIG German Shepherd, who was intrigued by Sunny! We got to talking and I heard all about Ed's life and in particular his journey with several dogs which required wheel chairs. In fact, he appreciated me listening to his story, that he gave me a badge with his "on the road camp" logo and blog site. He felt I deserved it for being a good listener. Ed literally traveled all over Alaska with his dogs. He did not want a disability to prevent his loyal companion from traveling. 

The second person who talked to me today, is someone I see on occasion in my neighborhood. Just my hello, caused a river of emotions to pour out of this individual. Everything from trouble with her son's teacher to the recent death of her sister. After we spoke, she thanked me for listening and though I couldn't make things better, it was clear she felt better knowing that someone understood how she was feeling. I have found grief is this way, we all experience it differently, and yet there are some commonalities. Especially as it relates to our feelings about the future, about day to day life, holidays, and of course how we can or can NOT interact with the outside world. 

My third and final encounter today was with a good friend who is in active cancer treatment. For Christmas, she gave me a drinking glass that is etched with the word, "grateful." She said that it is to remind me how grateful she is to have me in her life. Hearing that I have helped her in some way and that I am making a difference in her life is the gift. Her beautiful glass will remind me of today's encounter and the moral of the story being that making time for people and listening certainly helps others, but at the end of the day it is through helping others that we ultimately help ourselves.  

Wednesday, December 5, 2018

Wednesday, December 5, 2018

Tonight's picture was taken in December of 2002. I think this says it all..... Mattie loved eating certain foods by that point and got very animated while eating. Of course I would say that eating did not come naturally to Mattie, but with encouragement and a lot of fun and games, the food went down. 


Quote of the day: You who suffer because you love, love still more. To die of love, is to live by it. ~ Victor Hugo


Everything around us in Washington, DC today came to an absolute standstill. I can't recall my neighborhood in such a lock down mode. EVER! There were police and secret service everywhere. Our street was CLOSED to vehicles, Rock Creek Parkway was closed, and literally we had a DC police car sitting in front of our garage preventing people from driving in or out! Security for President George H.W. Bush's funeral was significant. This went on for hours and I guess what surprised me is I never thought we would be impacted as we don't live close to the National Cathedral. Nonetheless, whether one watched the funeral or not, if you lived in DC, you knew today was a solemn day. Federal workers were given the day off, and traffic was non-existent, almost holiday like. 

I am not sure I am so much into politics, as I am into how people live their lives. Listening to the special bond between George and Barbara Bush, I have to say that has moved me and it makes the recognition of the loss more significant to me. Certainly I know they were politicians, but to their family, they were everything. A death changes a family forever. Throughout the week, I have heard reflections from commentators about President Bush's life and when I hear about his devotion to his family and the Country, it makes me sad that we are saying good-bye to such a special generation. 

Instead of writing a memoir, Bush sent letters and kept a diary from the age of 18, where he laid down his thoughts about everything from family and love to life and aging. With his passing, Bush’s presidential library released excerpts from his letters and diaries as a tribute to his life and legacy. In the first of the series, Bush wrote in a letter to his children, dated September 1998, about aging: “Last year there was only a tiny sense of time left, of sand running through the glass.” Bush continued: “I want to put this aging on hold for a while now. I don’t expect to be on the A-team anymore, but I want to play golf with you and I want to fish or throw shoes and I want to rejoice in your victories and I want to be there for you if you get a bad bounce in life and no doubt you will for the seas do indeed get rough.”

Beautifully stated and in my perspective he was a man clearly in love with his children. I had the opportunity to watch the military ceremony on the tarmac of Andrews Air Force Base. It was truly meaningful, symbolic, well orchestrated, and captures the tradition of our Country. 

I understand the coverage of this event and I also understand the magnitude of the loss, and the need to pay respect to a man who served our Country. I just pause whenever I see a funeral of this magnitude because to every mother who loses a child to cancer, there is no fanfare. No media coverage, no appreciation of the loss throughout our nation. I am no way equating the two things, but I am simply acknowledging that when you lose a loved, the world seems to stop, and we expect it to stop for everyone else around us. Yet it doesn't. One commonality however, whether mourning the loss of a president or the passing of a child, is the forever loss that the family will experience. 

Tuesday, December 4, 2018

Tuesday, December 4, 2018 -- Mattie died 481 weeks ago today.

Tonight's picture was taken in December of 2002. Mattie was 8 months old and doing one of his favorite things.... walking. Mattie did not like sitting still and he most definitely wasn't into the whole crawling thing. He wanted to go from sitting to walking ASAP. I love this photo because it captures Mattie in motion, with the reindeer on his back side. 


Quote of the day: Though chronic pain affects 1 in 5 children, parents are seldom taught how to help manage symptoms. ~ Rachael Coakley


This week a friend of mine sent me the article below entitled, Your child and chronic pain: How to 'dial down' the agony. The article is written by a pediatric pain psychologist, and she writes about pain, not only from her professional perspective, but from having been in an ICU with her own son. She recounts for her reader, how harrowing it was to see her son in agony and how she felt helpless in managing the issue, not to mention felt overwhelmed by the hospital, its staff, and all its noises. I am quite certain that long term exposure to living in a hospital has traumatic consequences. We experienced it first hand through Mattie's eyes and our own. 

What captures my attention in this article is the author points out that helping a child cope with long term pain is truly a family effort. That parents must be treated as part of the care team and as such be trained on ways they can effectively help their child cope. She goes on to points out that when parents are thrust into such an chaotic medical environment, our own levels of stress, anxiety, and frustration set in. Sometimes making it difficult to know how to best help the child. The second noteworthy thing she mentioned was the importance of interdisciplinary care. Meaning in Mattie Miracle lingo..... IT'S NOT JUST ABOUT THE MEDICINE. In fact, managing pain has a real psychological component to it. In Mattie's case all the coping skills possible wouldn't have helped contain his pain given the nature of his cancer, but providing him psychosocial outlets were vital and I noticed they did impact his mood as well as our own. 

I realize the article was written about childhood pain, but as an adult, I too manage various chronic forms of pain. I can't say that I could manage them without medicine, but I would concur that my outlook and attitude are vital. They are what force me to get up and work, even when I don't physically feel up to it. When I am engaged with the world and physically active, I still have a migraine and muscular pains radiating from my hip, but working is a positive distraction. Just like the author mentions that kids with chronic pain need routines. Such as school. Routines are vital to all our health, regardless of age. 

No matter what kind of day Mattie was having while on treatment, we tried to do some things consistently. Because at the end of the day the activities we choose to do, give us control over our lives. Control that pain could easily take away from us if we let it. 


Your child and chronic pain: How to ‘dial down’ the agony:

https://www.washingtonpost.com/national/health-science/your-child-and-chronic-pain-how-to-dial-down-the-agony/2018/11/09/7d141a02-e12c-11e8-b759-3d88a5ce9e19_story.html?utm_term=.60a0e7652ba8

Monday, December 3, 2018

Monday, December 3, 2018

Tonight's picture was taken on December 5, 2002. Mattie was 8 months old and it was the first snow fall we received in DC that year. Of course for Mattie, this was his very first snow fall period. I dressed Mattie up in his Santa suit, we dragged out his entertainment saucer and placed a festive blanket over the plastic. This provided the perfect atmosphere for our first family Christmas card that year. 


Quote of the day: Long-term distress symptoms were elevated more than 9 years after a child’s cancer diagnosis, clinical cut-off scores in the parents of children with cancer group being close to those of patients experiencing cardiac arrests. ~  Eygló Guðmundsdóttir


In October of 2017, Peter and I presented at an International Conference held in Washington, DC. However, before our presentation that day, I decided to sit through all the morning sessions for multiple reasons. First, I like to be up to speed on the cutting edge childhood cancer psychosocial research that is out there, but second I believe it is important to know something about the audience I would be presenting to later that day. Therefore, sitting through morning sessions helped me assess the group, their experiences, interests, and where they worked and in what capacity. 

I am telling you this, because it was in those morning sessions, I met Eyglo Guomundsdottir. The woman who I quoted in tonight's blog. Eyglo, at the time was obtaining her PhD in psychology in Iceland. Unfortunately, we share the loss of a son to childhood cancer and she told me she wanted to devote her research initiatives to helping children with cancer and their families. What bonded us at that meeting was the fact that both of us were vocal about a particular research study presented to the group. We felt the researcher did not ask parents of children with cancer more in-depth and poignant questions, but the researcher's interpretation of the data she collected indicated one thing to both of us..... she had no understanding for the population she was working with! Both myself and Eyglo called this out. I am sure the researcher wasn't thrilled with us, but what we were hearing was so egregious we felt the need to advocate for families like ours right in the middle of the large conference room. 

Recently Eyglo shared with me a link to a power point slide deck she showed at a conference in Japan. I included it below. Eyglo shared it with me because she wanted my perspective and input. I have to admit that Eyglo introduced me to the term "vital exhaustion." It is a European term in reality that provides a new name to what we would once deem a nervous breakdown. Here's the definition of Vital Exhaustion.....

Vital Exhaustion (VE) has three defining characteristics: (1) feelings of excessive fatigue and lack of energy, (2) increasing irritability, and (3) feelings of demoralization. People often attribute these feelings to overwork, or to problems at work or in other important life areas that the person has not been able to solve, or to a real or symbolic loss. Therefore, it has been suggested that VE is a mental state at which people arrive when their resources for adapting to stress are broken down.


The concept of VE grew out of an interest in understanding the mental state of 'undue fatigue' and 'lack of energy,' a state that, according to the cardiological literature precedes myocardial infarction (MI) and sudden cardiac death. The prevalence estimates of fatigue before these events vary from study to study but range from 30 to 60%. The exact nature of these feelings had, was not studied in depth prior to VE.


Eyglo's study found the following:

1. Parents' whose child was diagnosed with cancer, scored higher levels of VE compared to parents with healthy children. 
2. A strong relationship was found between VE and traumatic stress. 
3. Long-term distress symptoms were elevated more than 9 years after a child’s cancer diagnosis, clinical cut-off scores in the clinical group being close to those of patients experiencing cardiac arrests (the score being 20). 
4. This suggests that parents of children with cancer could be at elevated risk of developing different physical complications over time (as well as developing severe psychological problems).

I found this study fascinating because I experience moments throughout the year in which I feel chronically tired. Absolutely exhausted. Exhaustion that doesn't coincide with my age. I never put two and two together to decipher that the long term effects of childhood cancer could be expressed in this capacity. I remember Mattie's 14 month battle and I also remember thriving on little sleep, poor nutrition, and constant intense stress. It set up the dynamics for the perfect vital exhaustion storm. Just like a hurricane which attacks and ravages communities and it takes years to recover and rebuild, this same storm analogy can be applied to living through Mattie's cancer diagnosis and death.  Cancer and the death of a loved one are devastating, they can produce vital exhaustion, and these feelings seem to reverberate impacting one's body and mind for years to come.  


Link to the study: Parental Vital Exhaustion Study

Sunday, December 2, 2018

Sunday, December 2, 2018

Tonight's picture was taken in December of 2002. Mattie was 8 months old. That evening we visited our sister-in-law's home. In the threshold between their dining and living rooms, was this hanging gizmo. It was called a jumper, but it could also be used as a swing. It literally clamped to any door jam. We had one at our home, but my sister-in-law also had one for her children. Mattie loved this thing, because his feet could touch the floor and he could move around independently which he loved. I can't tell you how many nights we spent with Mattie in this jumper, as we tried to rock and swing him to sleep. 


Quote of the day: If an egg is broken by an outside force, life ends. If broken by an inside force, life begins. Great things always begin from the inside. ~ Jim Kwik 

One of the things we accomplished this weekend is our Foundation's annual mass mailing to 400 of our loyal supporters. This is a major operation that takes over a month to plan, as it involves the creation of a gift that is included in the envelopes, it requires materials (envelopes, mailing labels, stamps), the development of the actual letter (which then needs to go to the printer to be professionally printed out) and of course an update to our annual fund database. 

We worked on all of this starting at the end of October, so that by this weekend, we were ready to assemble the mailings. 

I am grateful for Peter stuffing and stamping envelopes all day yesterday. Check out his assistant.... Indie!

There is no doubt that Indie is Peter's cat. She responds to him and wants to be where ever he is, even if it means being surrounded by hundreds of envelopes and paper. Perhaps Indie was overseeing the mass mailing operation, but to me it looked like she was lying down on the job. 

We took Sunny to Roosevelt Island today. I love going to the Island on cold days, because fewer people are there. Which means you can walk in peace and more wildlife appear. Can you see this wonderful female deer staring at us? Or I should say, watching Sunny. 

This deer couldn't take her eyes off of Sunny. Which is understandable, as some visitors take their dogs off leash on the Island. I have seen numerous dogs running and chasing deer, despite the fact that dogs are required to be on leash at a national park. So this deer has learned from experience..... all dogs are suspects. 

Sunny loved his walk and despite another grey day in DC, we were determined to get out in it and walk. This is the beauty of owning a dog, because whether you want to or not, the dog must go out for a walk. Sunny gets us out and interacting with the world at all times in the year.