Saturday, January 12, 2019

Saturday, January 12, 2019


Tonight's picture was taken in January of 2005. Mattie was almost three years old and this was very typical of Mattie. If I was in the kitchen, he wanted to be there too! Don't you just love the impish look on his face?




Quote of the day: Sometimes you have to take a half step back to take two forward. ~ Vince McMahon



On January 22, Mattie's school has asked us to participate in their new colloquium. The nature of the colloquium is to inspire common good and to encourage high school students to think beyond themselves. Around 20 different non-profit groups are coming in to meet with the students. Each of us are assigned a classroom, and students can choose to attend our 45 minute sessions. 

I have to admit that this age group is not my favorite to teach or interact with. So I have been truly struggling on how to occupy the 45 minute sessions, since I know that a simple PowerPoint and lecture won't work! This age group prefers active engagement and participation. Therefore, we have strategized role plays to highlight some of the psychosocial issues children with cancer and their families face and I am in the process of creating two group exercises. One which involves a matching game to determine the facts about childhood cancer and the other is a team competition to brainstorm the best and most achievable ways to get teenagers involved in our Foundation to promote awareness about childhood cancer and raise funds for us. 

In addition, I debated for quite some time regarding how to summarize Mattie Miracle for them. Certainly we could talk about it, but I concluded it would be better to develop a short video highlighting who we are. So initially I thought the video would be for this venue, but given the amount of time it takes to create a video, I decided to make a tenth anniversary video instead. A video that highlights our accomplishments and also gives the viewer a feeling for who we are and why we do what we do. This video can be used by the Foundation for multiple purposes! So in a way, this January 22nd event, motivated me!

I have been working on this video for two weeks now. Picking the music that the video was timed to was next to impossible for me. I can't tell you how many songs I listened to until I found the one that captured the sentiments and energy I was looking for. I mentioned in a previous blog that I chose the song "lean on me." Well I quickly changed that and moved to "You got a friend in me." However, I felt that song was too trite given the subject matter and therefore my final selection was Phil Collin's, "You'll be in my heart." I hope to launch the video tomorrow and when I do I will post it to the blog. 

Friday, January 11, 2019

Friday, January 11, 2019

Tonight's picture was taken in January of 2005. Mattie was almost three years old and by that point LOVED tub time. In the beginning Mattie truly disliked water and bathing him was a challenge. But then he turned a corner and fell in love with playing in the tub. He literally would throw his hotwheel cars and other toys in the tub just to play with them. I always thought it was ironic that I went from coaxing  Mattie in the tub and encouraging him to stay in long enough to wash him. To then the exact opposite..... spending hours in the water and having to drag him out because he was water logged. 



Quote of the day: Nobody made a greater mistake than he who did nothing because he could only do a little. ~ Edmund Burke


I think there is a lot of truth in this quote. We believe that our actions have to be big and bold in order for it to matter. Otherwise, perhaps it isn't worth doing? The media is notorious for this........ highlighting the provocative, the bizarre, or the extreme! However, the things that are most reportable are the unexpected gifts we give one another each day. It is through the ordinary acts of human kindness, that extraordinary things can happen for both the giver and the receiver. 

What am I talking about? Today I was in a meeting. After this professional meeting was over, someone stayed behind to talk with me. I have talked with this person before, as I know this person feels comfortable chatting with me about all sorts of issues. In any case, after our conversation, as I was going to leave, he wanted me to know that my positive feedback to him about his work makes a big difference in his life. 

The kind of feedback I got today, I have been fortunate enough to have received from other people as well.  Specifically that I made them feel included, took their comments and feedback seriously, made them feel better about themselves and in the process they felt a bond or connection with me. I wouldn't necessarily have known any of this unless they gave me this feedback. In many cases, I learn after the fact how something I did influenced or helped someone. Which causes me to pause, because the greatest gift I can give anyone is that of time and understanding. I don't expect anyone to notice what I do or to thank me. I do these things not for the kudos but for two reasons..... the first is I love learning about people and understanding how they think and feel and second, as Burke's quote points out, I do think how we interact and treat others can have profound long term effects.   

Thursday, January 10, 2019

Thursday, January 10, 2019

Tonight's picture was taken in January of 2004. Mattie absolutely loved boxes. The shape and size always intrigued him and then of course there was the numerous things he could do with a box. Mattie typically liked building and creating with boxes. But then got attached to his creations. We would have things around for a bit, until he and I agreed that taking a photo of some boxed creations would be a good solution. That way we always had documentation and memories of the transformed box. 






Quote of the day: Teachers affect eternity; no one can tell where their influence stops. ~ Henry Brooks Adams

Each year Mattie Miracle receives a donation from Dr. Twitty Styles (the man sitting in this photo). Who is Dr. Styles? He was my immunology teacher in college. We go a long way back with each other and we are still in touch. In fact, when Peter and I got married, Dr. Styles sent us a beautiful framed print of an historic building on our college campus. When Mattie was born, Dr. Styles sent Mattie an adorable Union College zippered sweatshirt. He has grown with me since I was a teenager!

Dr. Styles came into my life during a time when I wasn't the best of students. I was a biology and psychology major at Union College. For the most part, I LOVED all my psychology courses and found my biology courses less than interesting. Back then, if something did not engage me and if I did not see merit in learning what was presented to me, I basically did not. That was until my senior year of college, when I took an elective in biology, immunology. I had many med student friends in college and they all warned me about Dr. Styles' class. They found him to be tough, challenging, and was known to give pop quizzes. In addition, Dr. Styles never called you by your first name. I was Ms. Sardi for example. In addition, Dr. Styles would lecture but within his lectures he'd always asked provocative questions. Not for the whole class to answer, but he would call on a student at random. Did I find Dr. Styles intimidating? Maybe at first, but I loved his class and as we got to know one another, he became my first mentor. Dr. Styles believed I was bright and had potential, and given his stature in the classroom and in the biology department, that made me pause and have academic confidence in myself. 

I found Dr. Styles intriguing. I loved the text book he used in his class (which is saying volumes, because typically text books are dry and hard to sift through) and the content he presented made sense to me and I saw the importance of learning about the immune system and what can arise when it malfunctions. In fact, I still remember researching Lupus for one of his class assignments. 

I met Peter in college, and Dr. Styles got to know him as well! He took an interest in the lives of his students and back then it never really dawned on me..... the beauty of being a teenager. But Dr. Styles and his wife (a pediatrician) were pioneers in the Black community and I am happy to see link I included from Skidmore College below.  All I can say is a lot of time has passed since I was in college, and since I sat before Dr. Styles. Yet when people are special and they transform our lives, their presence remains forever with us. Dr. Styles is that kind of educator. God bless him at age 91!

Reflections: A Conversation with Drs. Constance Glasgow and Twitty Styles

https://www.skidmore.edu/diversity/init1/reflections.php

Wednesday, January 9, 2019

Wednesday, January 9, 2019

Tonight's picture was taken on January of 2004. Mattie was almost two years old. This was quintessential Mattie. Busy, strategizing, and playing with boxes. He could have had  all the toys possible, but at the end of the day, he loved a plain box. It was wonderful to see him transform them with his imagination. 

Quote of the day: Time is free, but it’s priceless. You can’t own it, but you can use it. You can’t keep it, but you can spend it. Once you’ve lost it you can never get it back. ~ Harvey Mackay



Like yesterday, today flew by. I started my day on a conference call. Last Fall, we went for a training in Dallas on a methodology that helps children with cancer and their families manage stress and improve decision making. As part of that training, we agreed to participate on four follow up conference calls. Today was the call. Keep in mind that I am the only advocate on the call. So for me I get to listen to how clinicians are applying this model at their treatment sites. 

I had issues with this model when we went for the training, but today confirmed my feelings. My issue with the model is that it can appear very linear, and unfortunately dealing with people and their issues is anything but linear. In fact, when talking about childhood cancer it is very easy to be falling from peaks or into valleys. One clinician mentioned today how she is having trouble sticking to the model, when such emotional content is being shared with her. The natural tendency is to listen to someone emote, reflect back on what you heard, and to ask more questions. Taking that route though would put you down a rabbit hole, away from the model. I think there are merits to the model, but it requires more flexibility. In addition, I think asking parents to strategize alternative actions and behaviors while in-patient is next to impossible. Living in-patient is highly stressful and produces a sheer lack of sleep. This isn't the best possible time to approach anyone, and I know the clinicians are finding this to be true. Nonetheless, I think what this shows me is that advocate participation is crucial. Living the experience provides vast insights that researchers and clinicians just don't have, and therefore advocates truly improve upon research. 

The rest of the day was consumed by the Foundation video I am trying to create. Believe it or not, I am NOT even close to being done with it. The song I chose is too short for the amount of content that needs to be featured. So I am back to the drawing board.

Tuesday, January 8, 2019

Tuesday, January 8, 2019 -- Mattie died 486 weeks ago today.

Tonight's picture was taken in January of 2003. I am so glad I captured this photo back then because I would say colorful cups were one of Mattie's favorite initial things to play with, and they grew with his cognitive needs. From liking the colors, to stacking, to of course filling and dumping water and sand out of them. Needless to say, I still have cups sitting on my tub in the bathroom. Not sure why, but they are where Mattie always liked to keep them. 
Quote of the day: It takes a long time to become young. ~ Pablo Picasso

Today we celebrated my friend, Jane's birthday (she is sitting). I met Jane when Mattie was in preschool. Her daughter and Mattie were in the same classroom. That was back in 2005, hard to believe it was 14 years ago. 

But here's the thing. The majority of moms I met at Mattie's preschool are still friends with me and are heavily involved in Mattie Miracle. It wasn't like we were at the preschool for years and years. We were only there for two years, but they were impressionable years for both children and parents. The preschool age is challenging and it wasn't unusual back then for all of us to chat at pick up and share stories, strategies, and of course to vent. 

Jane now works with us to help raise funds as well as to bring awareness of Mattie Miracle to her children's school community. As Walk season approaches, one of the people I rely heavily on is Jane. Which I greatly appreciate, because it is super stressful to set a targeted financial goal, and though I try to manage most of this myself, it is much easier on me to know I have a core team to turn to for support. A team that is as motivated as I am to make our awareness walk a success. So though it was Jane's birthday, the gift of her and my core team are my gifts. 

Monday, January 7, 2019

Monday, January 7, 2019

Tonight's picture was taken in January of 2003. Mattie was 9 months old and sitting in his favorite vehicle..... tot wheels. Mattie desperately wanted to walk at three months, but of course couldn't. As soon as he could sit up and touch the floor, we got him into this walker. When I am telling you he could maneuver this thing around the house..... zooming through rooms and tight corners, I am NOT kidding!


Quote of the day: I wish for those I love this New Year an opportunity to earn sufficient, to have that which they need for their own and to give that which they desire to others, to bring in to the lives of those about hem some measure of joy, to know the satisfaction of work well done, of recreation earned and therefore savored, to end the year a little wiser, a little kinder and therefore a little happier. ~ Eleanor Roosevelt


I began my morning with physical therapy. As I was riding up the elevator to the office, I was with a new mom and an adult woman and her father. The adult woman turned to the new mom with the baby carriage and began talking to her and asking about the baby. The as she and her dad were getting off the elevator, she said to the new mom.... "enjoy it now, because it goes quick." I listened and had nothing to contribute. Well NOT nothing, but nothing that would have been socially appropriate about time, babies, and being a mom. 

If you ask me how I spent the day, I can't tell you. I was doing lots of little tasks, but at the end of the day, I felt like I got nothing done. One of areas of focus now is developing a new video featuring Mattie Miracle over the ten years.... from its birth to now. Why am I doing this? Well partly because this year marks our tenth anniversary in November. But secondly, I am contemplating using this video at Mattie's school in a few weeks. As the school has asked Peter and I to present to high schoolers about the Foundation. I know that presenting to high school students is very different from the age group I was used to teaching (young adults and adults). 

So on my adventure to create a video, I first had to find the right song. A song that I think every one will identify with and have heard! Using a familiar song is important, because then I know people will watch the actual content of the video rather than focusing on trying to understand the song. I have spent two days on finding the right song, a song that also has some sentiment and meaning, without being too sad or sappy. I have listened to countless number of songs. But tonight when I was about to give up, I found the song that resonated with me.... Lean on Me (particularly this version): https://www.youtube.com/watch?v=Hmlm53wD5PM. That is just part one, because developing a video takes hours upon hours. As I have to find the right photos, then I have to write captions to explain the photos and tie them appropriately to the music. I must admit that picking a song that I can listen to OVER and OVER again is important, because by the time I finish with a video song, I must have heard it over 100 times. 

Sunday, January 6, 2019

Sunday, January 6, 2019

Tonight's picture was taken in January of 2003. In 2003, Mattie celebrated his first New Year's. Though we put Mattie in his crib earlier that night, don't you know by 11:30pm he was up and sat with us watching the New Year's Eve ball drop in NYC. The beauty of Mattie. This photo was taken at Roosevelt Island. A place Mattie loved to visit on the weekends. But notice his mode of travel. Mattie LOVED sitting in a backpack and could stay in it for hours, unlike a stroller or front carrier.  


Quote of the day: For last year's words belong to last year's language, and next year's words await another voice. And to make an end is to make a beginning. ~  T.S. Eliot

It was the first sunny day in a week that we had in Washington, DC. It was noteworthy and I knew we had to go out and enjoy it because the grey gloom is coming back tomorrow for the remainder of the week. Delightful! So we drove to Roosevelt Island with Sunny in tow. Not thinking that the Island would be closed because of the Government shutdown. When we saw the gates to the Island closed we were frustrated, but fortunately the Mt. Vernon Trail is right next to the Island. So we did a three mile walk on the Trail with Sunny. Sunny absolutely LOVED it, as he enjoys new adventures. I haven't been on this trail in YEARS. It is a great trail that is very visible, meaning that I would feel comfortable walking on it with Sunny during the week. 

There is a nice pathway that sits between a major road and the Potomac River. Many people were out and about today.  

Peter and Sunny in front of the Memorial Bridge. 

Rosslyn never looked so good. But my viewpoint is that everything looks better with the sun out. 

The one thing I like about the winter is seeing all the Canadian Geese. They really own our National grounds and water ways in the winter months. They remind me that life still exists even in this cold and grayness. 

I am fascinated by geese. Here are some facts about our feathered friends:

1. Contrary to popular belief, Canada geese don’t stay in one place. They’re constantly on the move. People think the geese they observed at a city park or pond yesterday are the same geese there today. Unless they’re injured, those geese have moved on. Resident geese are as addicted to flight as their migratory cousins. While they may not make the annual thousand-mile journey to Canada and back, they spend much of their time in the skies, pond-hopping from one U.S. park or waterway to another.
2. If one goose in the flock becomes injured. That goose is not left alone. They will try to stay with the disabled goose until he dies or is able to fly again. They will then either fly together or join another formation to catch up with their group. Geese will choose a mate when they are about three years old and will stay monogamous for life, raising new families together each year.
3. It is possible that when a goose dies, the survivor may find a new partner. When a Canada Goose loses its mate or eggs, they have been observed to mourn. They may remove themselves from the flock and stay by themselves and swim around in despair honking mournfully.