Saturday, December 12, 2020

Saturday, December 12, 2020

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and we took him to Los Angeles that year for Christmas. While there Mattie would wake up very early in the morning because he was on East coast time. So literally he would be up at 4am and raring to go! I am not sure how Peter and I managed it back then, because by the time my parents got up, we already had a full day with Mattie. 

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

• Number of people diagnosed with the virus: 16,020,646
• Number of people who died from the virus: 297,575

In May of 2010, Mattie's class donated a tree to his elementary school in his memory. A memorial tree is very special to us, because it gives us something to do and focus on during holidays and Mattie's birthday. Right from the beginning we decorated the tree and it is a tradition we continue. Today we went to the school with Sunny in tow and decorated Mattie's grove!

I call it the Mattie grove because there are literally THREE trees standing about 5-10 feet apart from each other, and each one was planted for Mattie. The first tree in 2010, died from an oak blight. So we planted a second tree in that location and that tree also was dying. So then a third tree was planted in a new location near the playground. Believe it or not, the third tree was hit by a bigger tree that fell in a wind and lightning storm. Can you believe this? So this photo is the official Mattie memorial tree. It is tree number 4 and it is a white swamp oak. 

A close up for the white swamp oak. I placed a red cardinal ribbon around all three trees today, and two out of the three trees we decorated with ornaments today. 

Mattie's official tree has stars, Christmas balls, butterflies, and toy cars on it. 

We also added an ornament with Mattie's name on it!

This is memorial tree #3, a Yellowwood Tree. The tree that got hit by a larger tree during a storm. After it got hit, it looked horrible and given our track record with the trees, we thought it wasn't going to make it. However, over time, it has bounced back and looks beautiful. It sits about five feet from Mattie's official tree. Nonetheless, I decorate it too! 

A close up of the Yellowwood tree. You may see plastic donuts hanging on the tree as well as jingle bell ornaments! 

This is memorial tree #2. I refer to it as Charlie Brown. Mainly because it is struggling and I am not sure it will make it. This Yellowwood tree was planted after Mattie's oak tree (the first tree planted in 2010) died. However, the arborist feels that trees planted too close to the AstroTurf is a problem. As the AstroTurf seems to leach into the roots. 

Therefore, tree 1 and 2 were planted here but 3 and 4 were planted in a different location, about 10 feet from here. Trees 3 and 4 are located in the school's playground, a place Mattie spent many hours after school with friends. 

While we were on campus today, we found many young children and their parents on the playground. After all kids need to do something while in lock down. In any case, it is always bittersweet visiting the trees, but the feeling is compounded when surrounded by healthy children running around me, oblivious to why we are there. I gave up a long time ago trying to understand why Mattie was diagnosed with cancer, but I must admit that question pops into my mind whenever I am in the midst of young children. What also pops into my head is my need to give these children's parents a lecture on how lucky they are, but of course I don't! 

Friday, December 11, 2020

Friday, December 11, 2020

Tonight's picture was taken in Christmas of 2003. This was Mattie's second Christmas! By that point, he was a live wire and running around all over the place. So the only way to get holiday photos of him was to strap Mattie into a shopping cart at Lowe's or Home Depot. That year, we dressed him in his holiday sweater and started snapping photos of him in the holiday display aisle of Home Depot. Look at Mattie's expression of wonder as he looks up at all the lights and displays. This wasn't the photo that made it onto the front of our holiday card that year, but nonetheless, it is a great photo. 

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

• number of people diagnosed with the virus: 15,782,055
• number of people who died from the virus: 294,144

It is now 6pm, and I haven't moved from my computer all day. I have been glued to it since 9:30am, when I had a licensure board meeting. I am worn out and I truly do not like virtual meetings and conversations! I feel they are grueling and awful for one's physical and mental health. Therefore, I am making this is a short entry tonight, in hopes that tomorrow is another day!

Thursday, December 10, 2020

Thursday, December 10, 2020

Tonight's picture was taken in December of 2003. That Christmas we took Mattie out to Los Angeles to visit my parents. Each day we tried to take Mattie on an outdoor adventure. That particular day we took him to Griffith Park. The Park has something for everyone and it is very kid friendly with playgrounds, train rides, pony rides, and even a Dentzel carousel. As you can see, Mattie was a bit cautious about going on his own horse, so instead he rode with Peter. In many ways, having Mattie allowed us to be children again and to explore the world through a new and unspoiled lens. 

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

• number of people diagnosed with the virus: 15,535,565
• number of people who died from the virus: 291,403

It is hard to believe that three years ago, Mattie Miracle established its child life program fund at Children's Hospital at Sinai in Baltimore. Next week, we will be donating $46,000 to this Fund. The Fund pays for the full time salary of our child life specialist, Adina. Adina is a gem, a go-getter, and a true Mattie Miracle advocate. From the parent and hospital feedback I receive on Adina, it is clear that her position is vital. By the end of this calendar year, Mattie Miracle is proud to say that we have contributed close to $150,000 to the Hospital to directly support children with cancer and their families. 

Each quarter, Adina supplies Mattie Miracle with a report about her work. Below are three bar graphs that help to illustrate in a snapshot the work that she does. This first graph illustrates the fast age range Adina supports. 

Before Mattie was diagnosed with cancer, I had NO idea about the child life profession. However, within the first week of Mattie's diagnosis I quickly learned that these professionals are vital to the child's and family's quality of life.  Child Life Specialists help children and families cope with the stress and uncertainty of acute and chronic illness, injury, trauma, disability, loss and bereavement. They provide evidence-based, developmentally and psychologically appropriate interventions including therapeutic play, preparation for procedures, and education to reduce fear, anxiety, and pain. This second graph illustrates the many interventions Adina uses with children and families in a three month time period. 

The interventions listed above help when supporting a child through the procedures listed in this bar graph below. The whole reason Mattie Miracle started a child life program fund at two hospitals was in honor of the connection Mattie had with his child life specialist, Linda. Linda was an extraordinary individual, and she made the impossible more manageable for Mattie and for us. Because we experienced child life support first hand and saw how effectively it worked with Mattie, we inspired us to spread this support to other children and families like ours. 

Wednesday, December 9, 2020

Wednesday, December 9, 2020

Tonight's picture was taken in December of 2002. It was the first snow fall of the year. But even more importantly..... it was Mattie's first time seeing the snow. We got him dressed up in his Santa suit and we brought him out onto our deck to snap photos. As you can see Peter was introducing Mattie to a snowball. Look at Mattie's curiosity.... he was clearly laser focused on what was before him and to me his hands and fingers were like little radar scopes!

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

• number of people diagnosed with the virus: 15,359,348
• number of people who died from the virus: 288,716

This morning Sunny and I went for a walk on Roosevelt Island. When Sunny stops in his tracks, I know that usually means there is something to see! Of course when I first looked I saw nothing. But.....

On closer inspection, sure enough there was a deer! I could walk Sunny in our neighborhood, versus going to the Island. But frankly, I am not happy with the safety or lack there of around me. Which is a sad commentary, because we did live in one of the best parts of DC for the longest time. But with shut downs and prolonged lock downs, this impacts the health and welfare of our city. So to me it is safer walking on the Island, maintained by the US National Park Service. 

Though I have a ton to do before I head back out to Los Angeles again next week, when friends ask for help, I make time. Today, I put together six flower arrangements for a friend. I always joke, what a florist will charge you for one arrangement, I can do six for the same price. 

I want these arrangements to last through Christmas. So I strategically picked evergreens and carnations. Hearty flowers!

In the flower section of the store I also found spray painted branches in red and some other glitzy items to jazz up the arrangements. 

I enjoy flower arranging and creating. So to me this is therapeutic. 

If you couldn't tell, I was trying to go with a candy cane colored theme!

Tuesday, December 8, 2020

Tuesday, December 8, 2020 -- Mattie died 584 weeks ago today. 

Tonight's picture was taken in December of 2003. This was Mattie's second trip on an airplane and his first Christmas in Los Angeles. Traveling with Mattie required a big bag of tricks. Toys, hotwheel cars, puzzles, you name it! Not to mention lots of sippy cups filled with milk. Mattie never slept a wink on a flight, so in order to manage the 5 hour flight, we had to be armed and ready! In fact, I recall several times loaning books and items to fellow passengers who were desperate to keep their children entertained while flying. 

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

• number of people diagnosed with the virus: 15,137,712
• number of people who died from the virus: 285,779

In 2003, I graduated from the George Washington University. One of the many things I had to do to receive my degree, was to do original research and write a dissertation. Did you know that the title of my dissertation was, The relationship among the use and non-use of eldercare services, self -efficacy, and job satisfaction on the perceived stress of employed caregivers of older adults. I was always fascinated by family caregivers and the incredible energy, passion, and selflessness they bring to their vital roles. Back in 2003, I wasn't a stranger to caregiving, as my maternal grandmother suffered a stroke in 1990 and my mom became her full time caregiver. I got to witness first hand the stresses and physical and emotional toll caregiving took on my mom. Then of course in 2008 I had my own experience with Mattie and now flying back and forth across the country to help my parents. I can't seem to NOT BE a caregiver. 

I was on a phone call today with someone I work with, and when she heard I was scheduled to fly back to California in a week or so, I got a lecture. A lecture on self care and you know the line.... you the take care of yourself first in order to be able to help others! 

Hearing about self care for me is like petting a cat backwards. I don't need to hear the obvious! I know all about the stresses I have and are under. Reminding me about them, without solutions and help, is futile frankly. After experiencing Mattie's cancer journey, I learned quickly NEVER to use certain words again. Starting with self care. The only thing self care triggers in caregivers is guilt and agitation. Those on the outside have to know that burdening caregivers with the mantra of self care is counter productive, because the one thing a caregiver is good at doing is more work and more tasks. Caregivers are not programmed to focus on ourselves. Especially when we deem others around us need support. Therefore, I think people need to give us more credit, and have faith in us that we will find the time to care for ourselves when we can and when we are able. In the mean time, perhaps be more patient and forgiving with us as some things do fall through the cracks when we are on overload. 

Monday, December 7, 2020

Monday, December 7, 2020

Tonight's picture was taken in December of 2003. That Christmas, we took Mattie to California to spend it with my parents. As you can see, Mattie and my dad were clapping along to music. It is hard to believe this photo was taken 17 years ago. So much has changed obviously with Mattie and now with my dad. Of course no picture is ever complete without pointing out the milk sippy cup! Linus (from Peanuts) had his blanket, Mattie had his sippy cup. It went every where with us, regardless of the time of day or weather. 

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

• number of people diagnosed with the virus: 14,909,148
• number of people who died from the virus: 283,503

Mattie Miracle started its psychosocial research grant programs in 2018. To date, we have funded over $60,000 in research grants that support the implementation of the Psychosocial Standards of Care. I am happy to report that we will be awarding more grants in 2021. 

During non-COVID times, we typically receive 20-30 research grant requests per year. This year, we received only 9 requests for funding. That is a big difference. We have discussed this significant decrease in applications with our research team. The overall consensus is it's not our grant program, but the nature of the climate right now. Professionals are working from home, trying to balance work, child, and family obligations. One researcher told me that the stay at home orders have enabled her to finish research projects, write them up, and publish results. In fact, several of our researchers, who are editors of research journals, have told me that the submission for publications to journals during COVID-19 is through the roof. However, the key factor that the team is telling me is that researchers can finish up projects that they started prior to lock downs, but that it is very hard to start new research projects right now. I feel very lucky to have this incredibly talented team of researchers to turn to, who not only review all research proposals that we receive, but who advise us on the state of the profession. 

Within the last week, I have reviewed all the letters of intent (LOI is an opportunity to introduce your proposed project to a funder and to elicit feedback that hopefully leads to an invitation to submit a full proposal) that have come into us. I feel it is vital that I read these proposed studies for myself and then compare my thinking with the research team evaluating the LOIs. We don't always agree, but this year, we were spot on, as we are in agreement about which researchers should be contacted and invited to submit a full proposal based on their 400-word LOI. The LOIs are only 400 words and from my perspective it is hard to explain a study with such a limited word count. But overall, it does give us a snapshot and conveys whether we want to seek more information through a full blown proposal or not.  

At times when I wonder was it worth it to get a PhD or not, I pause and think about my evaluation of research proposals. Would I be able to do this without my educational background? Maybe! Would I be taken seriously by our researchers, maybe not. I may be a parent advocate, but that wouldn't describe my entire skill set. I always felt that there are many ways to use a higher degree. Academia pigeon holes us and in a way limits our ability to think outside the box. I may not work at an institution of higher education, I may not be conducting research at a think tank, but I do use the skills and knowledge I learned to guide the mission and goals of Mattie's Foundation. 

Sunday, December 6, 2020

Sunday, December 6, 2020

Tonight's picture was taken in December of 2002. That was Mattie's first Christmas. It was an exciting time for our family and when Mattie was alive, it was important to me that we celebrated holidays and we always had a Christmas tree up. That year, I had a lot of baby's 1st Christmas ornaments on the tree! Never guessing that we wouldn't have many more Christmases together!

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

• number of people diagnosed with the virus: 14,747,102
• number of people who died from the virus: 282,231

I woke up this morning to find Peter under the weather. It appears that he had food poisoning. Which is confusing to me since we ate the exact same thing yesterday. Needless to say, Peter had a rough day today. 

Meanwhile, outside my window, I saw an accident today. Two cars were speeding around the corner and collided into each other. What I saw next was over the top. The driver of each of the cars in the accident knew one another. In fact, all the people in both cars got out and were walking on the highway. One person removed the license plate off the car that spun around (the car you see near the police car), and then all four of the people in the accident pushed the car into the middle of a traffic lane, and then abandoned the car on Route 66. They all escaped into the car that was hit, but was still operable. I honestly couldn't get over what I was seeing in broad daylight. This is a safe, or used to be, part of the city. But it was clear to me that the car left on the highway was stolen. 

This was NOT a red letter day for my neighborhood today. Right outside our building is this tent. We have had this issue before in our neighboring park, but now tent cities are forming all around us, and residents have very little recourse with the city. 

I snapped this photo of the Washington waterfront, because I wanted you to notice the orange tent in the distance. Sunny and I walked passed these three orange tents today. What are they? COVID testing sites. Mind you, I walk twenty feet away from these tents, because I find them suspect and don't want to be around anyone mulling about and waiting for testing. This is the third upsetting thing I saw in the District today. I frankly do not know who is running these COVID testing tents. There is NO official representation near the tents, like Quest or Lab Corp. Or even an affiliation with a hospital system. There isn't even DC Department of Health signage. So from my perspective these tents are operating illegally and I wouldn't put a toe in such a testing site. 

I spent a good portion of the day baking a three layer coconut cake. I am testing out recipes for Christmas. This cake is supposed to look like snow. I love when the recipe claims that the prep time is 15 minutes. Who on earth are they kidding!? I spent hours on this cake and all I can say is it better taste stellar. I will find out tonight.