Saturday, January 30, 2021

Saturday, January 30, 2021

Tonight's picture was taken in January of 2006. Mattie was almost four years old. That day I brought in homemade gingerbread houses to Mattie's preschool. Don't think I am an expert gingerbread maker! I had never made gingerbread before, but Mattie's teacher gave me a house mold, and my mother in law gave me a recipe for gingerbread and royal icing. From there, I figured it out! I made two houses and brought in lots of candy for decorating. The children had a great time that day, and in fact, every classroom in the school rotated through the room to help decorate the houses! All the children standing next to Mattie were in his preschool class. Ironically three out of the four families (of the children pictured here) are loyal supporters of the Foundation, 15 years after this photo was taken! 

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

• Number of people diagnosed with the virus: 26,032,572
• Number of people who died from the virus: 438,708

In my inbox today, I got an email with the title...... What to Say to Someone Who is Grieving. Needless to say the title hooked me in and by clicking through I found a website called What's Your Grief. Clearly I must have signed up for their postings, but I get a lot of emails daily, that I can't process through all of the non-immediate ones. 

But I am glad I did today, because there are many postings and articles I want to peruse. As my blog readers know, I can be very critical of most writings on grief and loss. Usually articles give you how to lists, which drive me crazy! I find them prescriptive and counter productive, because we all grieve differently and what works for one person may not be applicable or helpful to another. Interestingly enough What's Your Grief stated practically verbatim what I expressed.  

I do not know one human being untouched by grief and loss. Which is why I find it particularly intriguing that it is a subject matter we NEVER hear about in school. Instead it taboo and as such we aren't taught the language, or given the words to use to help the grievers around us! I get many questions about what is appropriate to say to someone who is grieving? You may want to check out this article: https://whatsyourgrief.com/what-to-say-to-someone-who-is-grieving/.

But the number 1 thing that MOST OF US find helpful is "supportive presence."  When friends and family say.... "I'm here if you need me," "I'm here and always will be," "I'm here each and every day." Of course if you say the words, it's important to back them up with actions otherwise that actually provides an additional loss for the griever. 

Here are 64 responses people have found helpful: https://whatsyourgrief.com/what-should-i-say-to-someone-grieving/.

I personally love this one.....“You can talk to me about your mom whenever you want – in 5, 10, 30 years.” What this implies to me is that others understand that loss is forever and therefore the griever will feel and express this loss throughout one's life. One doesn't go back to "normal" or "move on" after the first year of grief. That only happens on TV and in the movies.  

Friday, January 29, 2021

Friday, January 29, 2021

Tonight's picture was taken in January of 2009. That day Mattie had a visit from his "girlfriend," Charlotte and from our friend's daughters, Louise and Meredith (who were in high school, and befriended Mattie). Look at Mattie's expression. Basically what he was showing us was his clever left leg. The leg we affectionally called, "Curious George." It got that name because it was the only limb not operated on and the leg and foot worked as well as an arm and hand!  

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

• Number of people diagnosed with the virus: 25,874,892
• Number of people who died from the virus: 435,452

I was listening to a podcast on childhood cancer today and the speaker mentioned that George W. Bush's sister died from childhood cancer. I am not sure why I never heard about this before, as I try to know about all leaders and public figures touched by childhood cancer. So naturally this led me to do an internet search and I came across an article entitled, "Good-bye to Robin." Robin was only three years old when she was diagnosed with leukemia (1953). At that time her brother, George W. Bush, was only six years old. The author of the article did an interview with Barbara Bush to discuss the death of her three year old daughter. 

Here are some of the highlights that caught my attention (article excerpts are indented and my comments are underneath them)........... 

"The doctor told us, 'You don't do anything.' Then she gave us the best advice anyone could have given, which of course we didn't take. She said, 'Number one, don't tell anyone. Number two, don't treat her. You should take her home, make life as easy as possible for her, and in three weeks' time, she'll be gone.'"

In the 1950s, doctors advised family members NOT to tell their loved ones that they were dying. I am not sure the reasoning here makes any sense frankly, especially when it is quite evident to me that adults and CHILDREN know when they feel physically ill and that something is very wrong. In addition, what is striking here is the doctor never thought about the emotional impact on Robin's parents after hearing that their daughter was dying. No insight about the fact that the parents needed to tell others, because they needed support. 

"I remember asking the doctor why this was happening to our little girl, this perfectly beautiful creature. And the doctor said, 'You have to realize that every well person is a miracle. It takes billions of cells to make up a person. And all it takes is one cell to be bad to destroy a whole person.' So I came to see that the people who are sitting around alive are the miracles."

Though the doctor is most likely providing a very truthful statement, all I can say is...... honestly!? Does hearing what he said make the blow of hearing your child has cancer any easier? Do we really care to hear about all the walking MIRALCES around us when your child has cancer? 

"We had both been around the hospital for so long that around eight months after her death, we decided to have checkups because we both thought we'd caught something. And of course we didn't have anything, thank heavens. But when you've been around sick people for so long and this pain is there, you being to think you might be physically ill."

I absolutely relate to Barbara Bush's sentiments! I saw it within myself, that I worried constantly about being ill after Mattie died. Unfortunately research does indicate that intense caregiving leads to physical illnesses. In my case, I had several health scares since Mattie died. All of which were legitimate and not in my head.  

"I hadn't cried at all when Robin was alive, but after she died, I felt I could cry forever. George had a much harder time when she was sick. He was just killing himself, while I was very strong. That's the way a good marriage works. Had I cried a lot, he wouldn't have. But then things reversed after she died. George seemed to accept it better."

It is a very revealing comment about parents managing a child's diagnosis. I absolutely agree that as parents, Peter and I knew we had to be strong for Mattie. Rarely did Peter or I lose it emotionally while Mattie was undergoing treatment. We may have had our moments (never in front of Mattie), but we were solid. Once Mattie died, that is when Peter and I needed different things. We expressed grief differently, and it would have been very easy at that point to grow apart. But the key with any loss is to remember that we all cope with loss differently. It is okay if one of us was happy, while the other was crying. It was not a reflection on us individually or collectively. That insight, got Peter and I through the beginning journey of grief. 

"I used to spend a quiet day every year on the anniversary of her death. I was so sanctimonious about it. But in recent years I've noticed that October eleventh goes by without my noticing it. I think that's good. Now it's easy."

This comment struck me. I still am not sure how to react to it, maybe because for me September 8th comes around each year and I darn well know what happened on that date in 2009! It is a date I won't ever forget, and I know myself. If for some reason I did forget it, I would feel terribly guilty and disgusted. For me September 8th is NOT easy and I think that is "good."

Thursday, January 28, 2021

Thursday, January 28, 2021

Tonight's picture was taken in January of 2009. You maybe asking yourself... what was going on? This was a typical physical therapy session for Mattie when he was in-patient. We literally took up an entire hallway and people we did not know would somehow get involved in our activities. Needless to say, I snapped a photo of the process! The only two people I knew were Anna (Mattie's physical therapist) who was pushing the IV pole and Matt (Mattie's psychiatrist) who was holding the end of the colorful tubes. 

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

• Number of people diagnosed with the virus: 25,732,940
• Number of people who died from the virus: 432,540

Late last night, I received two emails from a supporter of Mattie Miracle. Her niece has two children who are in need of medical procedures and our supporter was reaching out to us for craft kit ideas for the children. She wanted the children to have activities in a kit, so they could transport them easily to the hospital and the children could play with them while they had to remain physically still and in one place for their procedures. Our supporter said that the children LOVED the kits their child life specialist provided them in the hospital, and she was looking to purchase more kits like this! 

Years ago, I met the founder of Kraftlove. In fact, we live in the same region, so we have had the opportunity to meet at various childhood cancer events. I learned from the Founder about their wonderful craft kits and I also know these kits are used at both of the hospitals we support. Therefore, I connected our supporter with the Founder of Kraftlove.

Then I reached out to Adina, our child life specialist at Children's Hospital at Sinai in Baltimore. I asked Adina for a list of non-profits that offer craft kits for children who are hospitalized. Below are some of the wonderful resources Adina shared, which I think are worth publicizing. Most of these non-profits will send individual children kits for free! Which is a wonderful gift and I know being the recipient of many gifts while Mattie was hospitalized, that they make a HUGE difference! Gifts can change a child's mood instantaneously like nothing else. 

Kraftlove: is a 501(c)3 organization that was launched in 2015 to help children impacted by illness. We create age appropriate art projects and place them into Kraftlove Boxes for children suffering from cancer and other debilitating or chronic illnesses and donate and deliver those boxes to children's hospitals through the hospitals’ Child Life Specialists programs. http://kraftlove.com/about-us/

Project Sunshine: Project Sunshine brings volunteer-led programming to pediatric patients and their families in a variety of medical settings. We recognize the tremendous weight of managing a child’s illness or injury, whether it requires short-term or long-term care. Every child with a medical challenge is unique, and our programs seek to adapt to the individual needs of each child. Activity kits...https://projectsunshine.org/what-we-do/ourprogram/

Caitlin's Smiles: is dedicated to sharing smiles and laughter with children facing chronic or life threatening illnesses. Founded in 2004 in memory of Caitlin Hornung, the non-profit organization distributes arts and crafts kits to hospitals, giving kids an outlet for creativity and the means to heightened feelings of self-worth. https://www.caitlins-smiles.org/

Get Your Play (On) Line: seeks to create fun, therapeutic activities, and live events, for children and their parents. Created and run by child Life students, we strive to grow our organization through developmentally appropriate play. Providing the opportunity to engage in play within any setting can positively impact a child’s experience. getyourplayonline.com 

GuidePosts: is a nonprofit organization dedicated to inspiring the world to believe that anything is possible with hope, faith, and prayer. They offer Comfort Kits free of cost: https://www.guideposts.org/free-comfort-kits-for-children

Wednesday, January 27, 2021

Wednesday, January 27, 2021

Tonight's picture was taken in January of 2009. To me this photo says it all! The bond between a father and a son is special. Mattie had so many things going on with him, from cancer treatment to feeling physically and emotionally fragile. Yet I watched him crawl on top of Peter for comfort, which  spoke volumes about their connection. 

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

• Number of people diagnosed with the virus: 25,565,874
• Number of people who died from the virus: 428,015

I had the opportunity to chat with a friend today who is going through all sorts of problems with her family. Her specifics are not important, but what was conveyed during our chat was my friend was feeling isolated and alone. Seems to be the common thread with COVID lock downs. Almost a year of this is truly hard on the one's mental stability. Nonetheless, in the discussion of feeling isolated and alone, came the statement.... "I have no friends." That is a loaded statement, that could mean almost anything, which is why I pushed for more clarification. 

I think we live in a world where we are led to believe that we need tons of friends to be happy! If you doubt what I am saying, take social media for example. Think about the power of that and the point is to share and connect with as many people that we know as possible. Yet would you expect your hundreds of Facebook friends to sit down with you, reach out to you, listen to you and provide support? Maybe you do, but I can assure you that would only set you up for failure. I don't want to belittle on-line connections, they are important too, but the problem with our technologically based society today is we confuse activity with strong bonds and connections. To me social media is activity! It is sharing bits and pieces of life with really any one who is listening. But because we are bombarded with constant information on-line, we never sit very long with any one message that flashes in front of our screen. We absorb content from second to second or minute to minute. Again, I am not saying that is bad. 

What I am saying is when we have important things to discuss and work through, we can't expect our entire friendship network to gather together to support us. It just doesn't typically work that way. Nor would we really want that? My friend perceives me as having many friends. Which I do, both personally and through the Foundation. Yet when I have a problem whatever I perceive that to be, there are only a few people that I would turn to. The key in life is having those handful of people. Those you can trust, who are willing to be honest, and have your best interest at heart. 

So with that in mind, when I helped my friend think about her statement about having 'no friends,' she realized that indeed this wasn't true. I think it is very easy to fall into this slump but it is important to remember that no matter who we are, we are never alone. There is always someone out there for us to connect with who is willing to listen, understand, and provide support. We can't take these gifts for granted, and I personally feel I was the recipient of such gifts EVERYDAY for over a year when Mattie was being treated for cancer. When it comes to feelings and acts of kindness, my mind is like a steel trap. I never forget, nor do I take for granted the incredible friendship network Mattie left behind for me. 

Tuesday, January 26, 2021

Tuesday, January 26, 2021 -- Mattie died 591 weeks ago today.

Tonight's photo was taken in January of 2009. I will never forget this moment in time. Mattie was struggling to re-learn to walk. We tried all sorts of games and gadgets, but that day Anna (Mattie's physical therapist) decided to try a reverse walker. I really did not think this would work since Mattie was scared of using the regular forward moving walker. Somehow, the reverse walker was better for Mattie and that day he took a few steps with it. As you can see Anna threw her hands up in the air cheering. Despite his best attempts though, Mattie was never able to walk independently again after his second limb salvaging surgery. 

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

• number of people diagnosed with the virus: 25,407,414
• number of people who died from the virus: 424,164

It was a grey, raw, and depressing Washington, DC day. We literally walked Sunny on Roosevelt Island through the mud and misting rain. I do think five years of caring for Sunny, I have learned to deal with whatever weather is thrown at me. As all dog owners know, you have no choice. Dogs need to go out! Despite the cold and dampness of the day, it was lovely to be on Roosevelt Island. We only saw two other people on the Island today and to me these walks are very therapeutic. Compared to the chaos all around us, being in the woods and with wide open space, is wonderful. I would like to say that the tents, homeless, and graffiti all around us was a temporary problem. Unfortunately it is and seems to only get worse month by month. I feel like everyone around me has gotten complacent and neither raises these issues with the city, or perhaps has given up trying. 

One of the things weighing on my mind is moving. As I know our current living situation is not sustainable, and our neighbors have even told me that our complex's property is up for sale in the commercial real estate market. HONESTLY! It is hard enough thinking of moving out of our home, but I worry for some of my neighbors who are older and have been here since the 1970s. This is their permanent home and community. Being forced to move can be devastating. Who is thinking about these residents? I know the answer is NO ONE. 

Meanwhile in addition to this simple fact, I also know that I can't live 2,500 miles away from my parents. That distance is too difficult now, and given the COVID climate, it has made traveling ten times worse. So I realize that Peter and I really do need to move, and in this move, I need to factor in my parents. Which is an added layer to my decision as to where we go. 

My parents are used to living in a warmer climate and certainly there are many advantages to living in a more temperate place. No snow, more outdoor living, etc. All important things to our quality of life. But if I want better weather, that means moving out of the DC area. Frankly such a decision stymies me. We have lived in Washington, DC since 1994. That is a long time. During this time, we both went to graduate school, had a child, developed a community, lived through childhood cancer and also started a Foundation in Mattie's memory. To me Mattie is tied to this area as are our friends and incredible supporters. Maybe because I moved across the Country when I was 14 years old, I am in a way scarred. I know the ramifications of geographical relocation. It can be detrimental to relationships. Yet I am also quite aware that friends and our support community are changing. As their children age and move away, so are they. Nothing stays the same. 

I really envy people who have lived in one area forever. They have developed roots and there really is no reason to move. Or at least to move out of state. Certainly one could say that you grow, learn, and evolve when experiencing new places. Perhaps, but there is a lot to be said to stability, community, and feeling a part of something. Needless to say, I feel great pressure to make a decision, I realize many people are relying on my decision, and I also know if I am going to make a change, it is easier to do it when I am younger.

Monday, January 25, 2021

Monday, January 25, 2021

Tonight's picture was taken in January of 2009. That afternoon we took Mattie out to dinner at one of his favorite restaurants. Honestly given all that Mattie faced on any given day, it is amazing that he was even able to smile at all. I think it speaks to his strength, love of life, and the powerful connection he shared with me and Peter. 

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

• number of people diagnosed with the virus: 25,246,713
• number of people who died from the virus: 420,439

While listening to the radio this morning, I heard about the startling stats regarding teen suicide! But the key here is suicidal thought that has increased because of the lock downs associated with the Pandemic. I have been saying this for months that the long term toll of social isolation will have a devastating impact on our communities. Unfortunately the stories shared by families confirm my fears and their reflections in the Washington Post article below are heartbreaking. It is hard enough to lose a child, but to think that you are responsible, that you believe you could have prevented this, or done more has got to be a horrific feeling that follows you forever. 

The article I am referring to is entitled, For months, he helped his son keep suicidal thoughts at bay. Then came the pandemic. 

https://www.washingtonpost.com/health/2020/11/23/covid-pandemic-rise-suicides/

There were several key statements in the article that caught my attention....

• Federal surveys show that 40 percent of Americans are now grappling with at least one mental health or drug-related problem. But young adults have been hit harder than any other age group, with 75 percent struggling.

• Centers for Disease Control and Prevention recently asked young adults if they had thought about killing themselves in the past 30 days, 1 in 4 said they had.

• A federal study in August on the coronavirus’s mental impact found that the youngest people surveyed had the highest rates of increased anxiety, depression, substance use and other mental health problems.
• America’s system for monitoring suicides is so broken and slow that experts won’t know until roughly two years after the pandemic whether suicides have risen nationally. But coroners and medical examiners are already seeing troubling signs.
• Since the crisis began, $175 billion in emergency funding has been allocated to hospitals and other medical facilities, but less than 1 percent of that has gone specifically to mental health and substance abuse services.
• “Why isn’t there a mental health leader on the coronavirus task force?” said Vaile Wright, clinical research director at the American Psychological Association. “Our physical and mental health are completely intertwined, and we need to treat them that way.”

As I was reading this article, and specifically focused on the last two bullet points, all I could think about was childhood cancer! Change the disease and the problem is still the same! Our medical model, our healthcare industry, thinks of illness in ONLY physical terms! Yet whether we are talking about cancer or a pandemic, we MUST think about the psychosocial ramifications. Like I always say with childhood cancer, the same applies to the pandemic.... IT'S NOT JUST ABOUT THE MEDICINE and THE PSYCHOSOCIAL ISSUES DO NOT END WHEN THE TREATMENT (or lockdowns) DOES!

When are we going to learn as a Country? How many children and families have to suffer such devastating psychosocial consequences without resources and supports in place? I am saddened to read about the countless number of families whose children have committed suicide during the pandemic. Which leads me to conclude that distance learning and connecting with friends virtually are NOT the same as in person connections. We may live in the technology age, but at the end of the day we are human, and humans require social experiences, we require outside stimulation, and feeling connected to others and with a purpose. All of which can't possibly be adequately received through a computer. 

Sunday, January 24, 2021

Sunday, January 24, 2021

Tonight's picture was taken in January of 2009. That day Mattie received two gifts. A big wand and ice cream from the Dairy Godmother in Del Ray, VA and many military themed badges from my friend in the Air Force. You can see Mattie had the badges sitting on top of him and he was holding the wand! I will never forget the outpouring of love and support for Mattie the year he was battling cancer. Every day we received gifts either in the mail or they were hand delivered to us. I can't tell you what a huge difference these gifts of kindness made in our day. Some days the only thing that brought a smile onto Mattie's face was opening up a new gift. Which is why, no matter how many years go by, I will always be grateful to our support community! 

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

• Number of people diagnosed with the virus: 25,109,148
• Number of people who died from the virus: 418,982

It was another busy day here! We walked Sunny at Turkey Run Park, and then I came home and worked the rest of the day. I was determined to get the January Newsletter for the Foundation OUT actually in January. That may sound easier said than done. The labor intensive part was going through all December donations as well as updating the Foundation website. All that had to be done before I could begin writing. But I am happy to report... mission accomplished!

Meanwhile, Peter and I put together chicken stew today. I like cooking bigger meals on Sunday, so I can have left overs for lunch during the week. I decided to try this chicken stew recipe:

https://www.spendwithpennies.com/chicken-stew/

However, I never follow the recipe in terms of quantities for vegetables. I always throw in almost five times more than is recommended.