Sunday, March 1, 2015

Sunday, March 1, 2015

Tonight's picture was taken in February of 2006. I have been searching for these Valentine's photos for a while now. The reason I couldn't find them is that I stored them in my March of 2006 folder instead of February. In any case, this was what our first floor would look like around Valentine's Day. We would make hand decorated Valentine's together for Mattie's friends, classmates, and teachers. Mattie loved gluing and creating and he could spend a lot of time doing these kinds of projects. 





Quote of the day: Are the days of winter sunshine just as sad for you, too? When it is misty, in the evenings, and I am out walking by myself, it seems to me that the rain is falling through my heart and causing it to crumble into ruins. ~ Gustave Flaubert

It was another stellar weather day in Washington, DC. Grey, frigid, rainy, and toward the end of the day we had freezing rain. Everything became covered in ICE. Peter took some photos of our bushes. They look like big popsicles. 

Our rose bushes and cages that we put our tomatoes in are completely iced over! 

Typically this weather would bother me. Of course I am not in love with it but I would have to say I am so busy working on Foundation things, which leaves me glued to a desk that it really doesn't matter to me what kind of weather it is outside. For the most part I am so absorbed that I am not even paying attention anymore. Which isn't a good thing. I need more perspective and hope as March moves along and two conferences that we are attending will be over soon that I can begin to focus on ONE THING AT A TIME. Rather than many large projects simultaneously. 

Saturday, February 28, 2015

Saturday, February 28, 2015

Tonight's picture was taken in May of 2009. Mattie was at the Mattie March, which was the Walk his care community held in his honor. I love this photo for many reasons. Next to Mattie were his two buddies, Zachary and Brandon. Zachary and Mattie became close friends on the first day of preschool, and Mattie and Brandon became friends through their cancer battles... despite their significant age differences! These two friends stuck by Mattie's side throughout Mattie's cancer journey and also during the Mattie March. On aside, notice the cup Mattie was holding. To the average picture viewer you would think that Mattie was drinking something. I assure you there was NO liquid in that cup. The cup was filled with tent moth caterpillars that were found at the event. Mind you we brought them home with us, because this was our spring time tradition. Mattie loved watching the metamorphosis process and he diligently fed the caterpillars until they spun their cocoons. Then of course we would wait until they transformed into moths and we would have a releasing ceremony on our deck. To this day whenever I see a moth hanging around our deck, I can't help but wonder..... is this one of Mattie's moths coming back to visit?


Quote of the day: I cannot rest, I must draw, however poor the result, and when I have a bad time come over me it is a stronger desire than ever. ~ Beatrix Potter

I completely relate to Beatrix Potter's quote. It is hard to believe that the author and illustrator of Peter Rabbit had any bad times come over her since her final products were so wonderful and have entertained countless generations of children. Yet her comments are quite meaningful, because when she was troubled by something she drew. As if it was a form of therapy for her where she perhaps worked out her problems. We all have our ways of dealing with things. One of the ways I suspect many grieving parents deal with the loss of a child is immersing themselves into work. I am not the only one, I see it with others around me. We all have our own crusades. As such, because I have spent a good portion of my day in front of the computer working on various projects, I am stepping away from it tonight because I need a break.   

Friday, February 27, 2015

Friday, February 27, 2015


Tonight's picture was taken on May 23, 2008. I remember that moment in time like it were yesterday. Mattie came home from school on that lovely spring day. It was a Friday, and when Peter came home from work, I suggested we walk down to the Potomac River and take Mattie on a river cruise. Mattie loved boats and of course he jumped at the chance. I am so happy we did that and I captured that moment. It was a real spur of the moment decision and activity but it was something we all did and enjoyed as a family. 




Quote of the day: No tears in the writer, no tears in the reader. No surprise in the writer, no surprise in the reader. ~ Robert Frost


Robert Frost's quote actually made me laugh when I read it. I have been told throughout my years of writing the blog that my writings have made my readers cry, laugh, and experience a full range of emotions. Most likely whatever emotion I am feeling at the time that I am writing the blog. Or at least that is my hope because my goal is to convey my thoughts but also my feelings through my words. 

I want to tell you about two surprises. They are not huge to most people, but I celebrate small victories these days and positive interactions with people! I call them surprises in my day. So NO I did not win the lottery or anything big like that. However, before my surprises, I went to a childhood cancer meeting today to discuss lobbying issues with other cancer organizations. After the meeting I chatted with another parent that I happened to know who is an advocate. I think part of doing this kind of work is that it can be very disillusioning. You can get trapped at working around the clock, trying to accomplish whatever your goal is (and each of us has our own goal whether it is looking for a cure, addressing psychosocial issues, you insert the issue) and in the mean time burn out physically and emotionally. The problem is the issues are still ever present and one has to ask one's self at the end of the day..... did what I do make a difference? Does any of this matter? This is a rhetorical question in a way because it is not like he or I are going to do anything else. We both quit our former jobs and life. We both have no interest in what we did before. Yet for me I have times when I am frazzled, tired, and when I listen to banter for four hours and see things not progressing year after year in the childhood cancer lobbying world, I wonder. 

Onto my surprises. Today I was contacted by the National Comprehensive Cancer Network (http://www.nccn.org/). In about two weeks, Peter and I are going to Florida to attend this conference and present a research poster regarding our psychosocial standards of care project that we have been funding. NCCN wanted me to know that our abstract for this poster was going to be published in their hard copy journal. That did not mean much to me until they told me that only the top 12 poster abstracts got selected to be published in their hard copy journal. To be a part of the top 12, one has to meet a rigorous review point process. So I was thrilled because NCCN is known for its practical guidelines in the cancer world.

The other nice surprise has to do with a positive interaction I had with a general manager at a restaurant I frequent. I was most upset on Sunday after a terrible interaction with an employee at this restaurant. This is a restaurant I have been a loyal patron of over 13 years and one that Mattie loved. In any case, after interacting with this individual, I wrote an email to the restaurant and fortunately documented my complaint. I called to follow up with the restaurant's private event manager because I am hosting a dinner there on Tuesday night and while talking to her, I told her my issue. She suggested I talk to the general manager directly. I did, and he was delightful. He wanted me to forward the email I wrote to the restaurant to him directly and he was deeply sorry to hear about my experience and wants to make it right! So we shall see what that means. In any case, part of the issue about being treated poorly is feeling like no one understands or is listening to you. The fact that the general manager heard my concern and will be addressing my feedback with his employee was exactly what I needed to hear. 

Thursday, February 26, 2015

Thursday, February 26, 2015

Tonight's picture was taken on April 22, 2002. Mattie was 18 days old. Despite his newness to the world he was VERY alert and was born ON. It was almost as if Mattie knew he couldn't miss a single moment of life or time with us. 




Quote of the day: It is good to love many things, for therein lies the true strength, and whosoever loves much performs much, and can accomplish much, and what is done in love is well done. ~ Vincent van Gogh


We had a dusting of snow in the morning which made driving rather interesting. When I learned to drive I was living in Los Angeles. So I literally have NO knowledge or skills for driving in the snow. But I had meetings at Georgetown Hospital this morning, so I had to figure out how to get there. Most of the roads were fine until I decided to park on a side street. That was my mistake, I should have parked at the Hospital, but I am SO opposed to their parking garages and I try to avoid that chaos at all costs! Therefore when I park in the neighborhood close to the Hospital it involves driving up a slight hill, and that is where I had a problem. Thankfully my car, which is old by the way, has anti-skid technology. The only reason I know this is I saw a light go on my dash board and I could feel something quite different was trying to take over the car. In any case, I am thankful for technology because I literally had no idea how to get myself out of this snowy hill.   

I had the opportunity today to be a part of the interviewing process of a candidate for the child life position that the Foundation is funding. This child life professional would cover the weekend hours at the Hospital. In so many ways weekends can be very isolating times and not having access to the child life playroom, activities, and additional games and toys are a real problem. With the funding of this new position, more opportunities will be available to children and families who are inpatient. It is certainly wonderful to be able to fund positions and to know we are making a difference, but it is very special to me to be included in the decision making process. Child life holds a very important place in my heart because it was Mattie's child life specialist, Linda, who was there for us every step of the way. Our goal is to be able to provide every family access to people like Linda, so that they know they are not going through their ordeal alone. 

Wednesday, February 25, 2015

Wednesday, February 25, 2015

Tonight's picture was taken in September of 2008, the same month that Mattie began chemotherapy. Mattie received this wonderful foam world puzzle from my in-laws. Mattie loved puzzles and immediately assembled it together and then of course sat on it because he was intrigued by its texture. I entitled this photo..... "Mattie sitting on top of the world."


Quote of the day: Gratitude is not only the greatest of virtues, but the parent of all others. ~ Marcus Tullius Cicero


I am full swing in planning for the Foundation's Annual Walk. The past week or so I reached out to our corporate sponsors and asked them whether they would continue to sponsor our Walk again this year. One of our sponsors, IBC, has been with us since 2011, practically since our first Foundation Walk. They have sponsored our Walk for four years in a row! This year I asked IBC whether they would sponsor us at the Mattie Miracle level, which is a $5000 sponsorship. I explained that the work we are doing at both the local and national levels requires greater funding this year and I outlined specifically how the money would be allocated and my hope that they would consider joining us to achieve our goals. 

I was thrilled to receive several emails from IBC today letting me know that they granted my request. I heard this news directly from the President himself! Who tells us that sponsoring the Foundation is an easy decision. If I could only clone Dan and IBC, Mattie Miracle would be in stunning shape financially. Mattie Miracle is deeply grateful to IBC for having faith in us for five years in a row and sponsoring our Walks and standing behind our mission and the work that we do! We are honored. To learn more about IBC, please check out their links below. 

About IBC:
http://www.ibcdbs.com/

Making a Difference in the Community:
http://www.ibcdbs.com/our-company/our-community/

Tuesday, February 24, 2015

Tuesday, February 24, 2015 -- Mattie died 285 weeks ago today. 

Tonight's picture was taken during the Mattie March of 2009. This was the event planned by our Team Mattie care community, that in essence has served as the model for all subsequent Foundation Walks. Pictured with Mattie are two of my former undergraduate students, Ariel and Tess. Ariel has graduated from nursing school and is practicing in New York City. Mattie's battle with cancer and our story inspired her and today I found out that Tess just got accepted to nursing school. Both women were captured by Mattie and the role that nurses played in our lives. I can only imagine Mattie's reaction to hearing this news and I have to wonder how he would feel knowing that his life has changed the career path of others.  


Quote of the day: To me, education is a leading out of what is already there in the pupil's soul. ~ Muriel Spark


Today I had the wonderful surprise of getting a message through Facebook from a former student of mine. I am not a big Facebook fan or user. I do use it to promote our Foundation, but I do not have a personal page for myself. I suppose in lieu of a Facebook page I have Mattie's blog, and Mattie's blog is FAR more detailed about my life. I have known Tess for at least 10 years. Perhaps longer. She was a student of mine when I taught at the George Washington University. However, there are some students who do stand out in my career and I can assure you I taught hundreds of students. Tess was such a student. When Tess contacted me today and told me she was accepted into nursing school, I wasn't at all surprised by this. She is a very bright, committed, and compassionate individual. However, what I did not know was the extent to which Mattie's battle, the blog, and my story have impacted her decision. After all these years I was truly touched to hear that I have made such a difference in the mind and heart of one of my students. As I told Tess, this is a true gift she gave me as a teacher and as a person. 

This is the message Tess wrote to me on Facebook today..............
Mattie Miracle - I had you in mind this weekend at the Cycle for Survival event to raise money for rare cancer research. Mattie's story has had a lifelong impact on me, and the Sardi family continues to inspire me, especially as I head into the nursing profession!

The message Tess wrote is lovely but I also love what is on her poster. It says... Vicki I'm remembering your Mattie Miracle. Mattie (2002-2009). Your blog changed my life. You inspired me to go to nursing school!! I'll never forget and I want to help make a difference. 

Monday, February 23, 2015

Monday, February 23, 2015

Tonight's picture was taken in May of 2006. Mattie was in his preschool classroom and behind him in this photo was his "best" friend Zachary. Mattie and Zachary were inseparable in school. They were like two peas in a pod. Their connection, I would say, occurred during the first day of school and remained strong even after preschool finished! It was a very unique bond. I remember receiving an email from Mattie's teacher after the first day of school letting me know that Mattie made a good friend that day! Mattie was pictured here running up and down the loft in his classroom. Mattie loved the loft space and he also LOVED tape! My understanding was he went through many rolls of colored tape that first semester and they had to cut off his tape supply since Mattie literally taped up the entire loft at one point. 

Quote of the day: Any fool can be happy. It takes a man with real heart to make beauty out of the stuff that makes us weep. ~ Clive Barker

Today I met my friend Christine for lunch at a restaurant that I used to love. I would go to this restaurant with my friend Margaret on special occasions. In fact it was Margaret who introduced me to this restaurant. What I loved about it was where it was located. It is in Alexandria, but off the beaten track. Parking was easy and it was tucked in an area between an outdoor garden store and another quaint little store. The restaurant itself is run by a husband and wife team and it is like a french bistro. Very charming and the food has always been wonderful. But of course all things change! People want to expand, remodel, and so forth. However, NOT all changes I have to say are for the better. This restaurant moved locations, the space inside is larger, and the decor of the restaurant is much more open and modern. So in essence it is a night and day difference from its previous look. All of that would be fine if the cuisine remained just as wonderful and creative as before. BUT................... 

It saddens me that a special place that I used to go to with my friend is no longer the same. It is hard when you lose people that you care about, it seems natural to turn to things in our physical world to help keep us tied to them. When these tangibles change as well, this can be very unsettling. It is in these moments that we must rely on our own memory, the sharing of stories and reliving memories between friends and family. However, the problem with a loss is NOT everyone always wants to remember. We all have our own needs and ways we want to process a loss, which of course is fine and deserves to be respected but as I reflect on my most recent bunch of losses (Mattie, Mary, Jocelyn, and Margaret) it is hard when your support networks you grew close to also die off and you can not turn to them to discuss the original loss and person who bound you together in the first place. Interesting what visiting today's restaurant evoked within me, no? Memories of a time gone by, changes that now exist that poignantly go beyond the restaurant's location but to the losses in friendship and people in my life.