Saturday, December 6, 2014

Saturday, December 6, 2014

Tonight's picture was taken in December of 2003. That particular day we took Mattie to both Home Depot and Lowe's. We wanted to take a Christmas Photo of Mattie for the front of our holiday card! We dressed him up in his red sweater, planted him in a shopping cart and we were looking for the perfect backdrop for our photo! Now you may be asking why on earth did we take him to such stores to take a picture?! Well Mattie loved these stores and these were about the only stores in which he did not mind sitting still in a shopping cart for a SHORT period of time. I figured these stores would have Christmas decorations and it would be there we could capture some sort of scene for our holiday card! I knew it wouldn't happen at home and forget going to visit Santa! Mattie HATED the MALL!!!!! This wasn't the final photo we used for our card that year, I will show you the final photo later in the month on the blog, but this was one of many we captured that day! As you can see Mattie was in awe of the lights and all the displays at the store!!!


Quote of the day: The highest court is in the end one’s own conscience and conviction—that goes for you and for Einstein and every other physicist—and before any science there is first of all belief. ~ Max Planck



We live in a society in which grief and loss issues are rarely discussed and if they happen to be then the hope is that the dialogue remains on the surface and that the issues can be dealt with and managed. It is hard enough to see an adult face grief and loss, but how do you help a child cope with the death of a loved one? Well depending upon one's philosophical stance on this.... the answer differs. The answer could range from doing nothing because children are resilient and really do not understand the concept of death and dying to the exact opposite which would be helping children process and cope with the loss in a developmentally appropriate manner. 

On occasion, I reflect on Mattie's close friends that he had in preschool and kindergarten and I wonder about their lives now. I of course remember Mattie's friends very well, but it is quite possible they do not remember me in the same way! Research shows that true solid memories aren't crystallized in children up until age 10. Children can remember things, but their earliest memories tend to change over time, being replaced with “newer” earliest memories until around age 10. As this happens, memories occurring in the preschool years tend to be lost. For example, I remember asking Mattie when he was in kindergarten about things that occurred in his life the year before when he was in preschool, and in many cases he couldn't recall what I was talking about. Not even specifics about his teachers. I knew this was the product of a developing brain, a brain which needed me to serve as the institutional knowledge!

Yet for Mattie's close friends, despite the fact that they lost him at the YOUNG and tender age of 6, this has affected them. This trauma has remained somewhere within their memory, and it could be at a very unconscious level. But to me the "spark" that I saw in these children has changed. I don't want to say it has gone out, but that it isn't the same. Mattie brought out the best in some of his friends and I know when any of us are are with someone who we relate to, this makes us feel good about ourselves and in essence changes our outlook and opinion on just about everything. 

As Mattie's mom, it saddens me to know that his friends have been affected by his loss. Of course this doesn't surprise me, as I know I have been forever changed by it, and I do believe children are quite perceptive and sensitive to their environments. Part of me wonders what would have happened to these children if they never met Mattie? Would their lives have been very different today? I certainly do not know the answer to this, nor can I speculate. I think what happens however is when you are in my shoes, you feel a sense of guilt.... as if you started a train wreck that had a domino effect. But then of course logically I know that I did not bring about Mattie's cancer or his death, and most certainly had no idea this was going to impact the lives of those he was going to come in contact with. 

Mattie was an extraordinary little boy and he touched our lives, even for a short period of time. I know for me he has been one of my greatest teachers and it is my hope that in time through Mattie's special and unique signs in nature he figures out a way to signal to his friends that he is still connected to them.    

Friday, December 5, 2014

Friday, December 5, 2014


Tonight's picture was taken in December of 2002. Mattie was eight months old and sitting in one of his favorite toys or devices.... the jumper. This thing attached to any door frame. Then Mattie could sit in it and jump up and down to his heart's content. Mattie loved movement and being free. He wasn't a crawler, EVER! The jumper allowed him to stand and move around without assistance which he loved and then when he grew tired of jumping, we would swing him in the jumper. This was one of the MUST have items on our list with Mattie! 


Quote of the day: Don't allow your mind to tell your heart what to do. The mind gives up easily. ~ Paulo Coelho


I think tonight's quote is so applicable to the work that I do each day with the Foundation. When many of us choose a professional, we typically select something that our minds are GOOD at! That we can wrap our head around. Something that makes sense to us, maybe a skill we have, or something that we love doing and understand and want to do! It can be problematic to be regulated by one's heart rather than one's mind. When you make decisions with your heart, the decisions can be more impulsive, they can be more emotionally based and they at times can be more raw and based on something more personal. This has pluses and minuses. 

With the Foundation, all paths somehow lead back to Mattie! It is kind of like the North Star! He is our compass and guides many decisions. Again this can be a blessing and a curse, it is a curse because at times I feel like Don Quixote in search of a windmill trying to fix a wrong. But of course the wrong was committed a long time ago in September of 2008, when Mattie died, and that can't be repaired. Yet in my work, my windmill still spins in hope of finding that fix. Of course logically nothing I do will ever repair this hole. I can find myself on conference calls, like today, and I hear professionals talking about a topic I LIVED! Especially when issues like bereavement come up. To me bereavement and loss are not theory. They are real. These are issues that are pervasive, they impact my life today, tomorrow, and into the future. But I am not alone. I feel like I represent all the other bereaved parents out there who lost a child to cancer. When I hear conversations that try to lump "our" issues in with other issues related to cancer, I can't take it! It is like petting a cat backwards, and usually that is when my heart takes over, and forget the mind. I have developed a new tag line.... bereaved parents are the "forgotten ones." Once our children die, we fall off the radar scope of most care institutions. If you are lucky enough to have a care institution follow you one year post death, you are lucky, but after that point, then what? Some hospitals may invite you back year after year to their annual remembrance ceremony in the hospital chapel, but in my mind that doesn't constitute support. That is once a year, what happens all the other days in the year? What happens during the holidays? How are you supposed to integrate back into a world which doesn't understand grief and loss in general, much less the death of a child? 

With the death of Mattie, my mind has been taken hostage by my heart. I am aware of this in myself and I do try to keep it in check since I do know that not every one can manage my outbursts at times. Yet my outbursts are not usually intentionally directed at people. It may be perceived that way, but that is the challenge of working on something that you are emotionally connected to.... at times your heart will always outweigh the mind. 

Thursday, December 4, 2014

Thursday, December 4, 2014

Tonight's picture was taken in November of 2003. We took Mattie to Frying Pan Park in Herndon, VA. Mattie was intrigued by the animals!!! He wanted to reach out and touch them and they were coming on over to visit him as well. As you can see so was a black Labrador Retriever. It was quite a show that day, but Mattie was happiest when he was outside, in the fresh air, in wide open spaces and without a lot of chaos and people around him. 


Quote of the day: Without fear, we are able to see more clearly our connections to others. Without fear, we have more room for understanding and compassion. Without fear, we are truly free. ~Thich Nhat Hanh

Today I ventured to the National Institutes of Health (NIH) in Bethesda, MD, to deliver my last round of candy. Now visiting NIH may not sound like a major problem, unless you have actually driven onto this campus before (I included a schematic of this nightmare for other directionally challenged people like myself so you could see it for yourself). It is like a compound. First of all, you can't just freely drive into it and park! You first have to get through security. Which means you have to get out of your car, open up your doors and trunk for inspection, move away from your vehicle and go inside to walk through a metal detector and have your government issued ID checked.

While I was inside going through the metal detector, the guard who was inspecting my car, came back inside to get me. She had me come back outside because all the other inspectors wanted to meet me! Why? Because they wanted to meet the candy lady! They are used to inspecting cars every day, but it was a first for them to inspect a car with a trunk load of candy! They said it was very hard to resist inspecting the trunk without taking the candy and wanted to know where the candy was going. When I told them it was going to the Children's Inn on campus, their response was.... "we wouldn't take any candy away from the children!" 

In June 1990, The Children's Inn at NIH opened its doors to pediatric patients and their families. Since then The Inn has been in continuous operation: 24 hours a day, seven days a week, 365 days a year. The doors never close. During the past 24 years, more than 12,712 seriously ill children and their families have made 50,000 visits to The Inn. Children and families travel from all over the world to the National Institutes of Health (NIH) because conventional treatments have failed to have sufficient impact on their illnesses. Children receive treatment for illnesses such as cancer, heart, lung, blood, bone and growth disorders, mental illnesses, and HIV infection. The Inn stand in sharp contrast to the isolation of a hotel room. In the lively atmosphere of The Inn, the kids and their families can put aside the challenges they face. The Inn gives kids a place to be kids for a while, instead of patients. At the end of the treatment day, they leave behind the IV drips, the needles, the nurses and doctors to return to The Inn and, most importantly, to the comforting presence of their families and caring staff and volunteers.

The Inn itself is quite lovely! I have visited it once before when I first went out there to visit Lori Wiener, who is our lead psycho-oncologist on our National Standards of Care project. The Inn really feels just like it sounds..... like an Inn. Even the carts look like hotel carts, not some sort of institutionalized vehicle. In any case I will never forget the face of a young girl today who saw this cart load of candy. Her eyes became glued to the cart and literally you could see she wanted to know just when she was going to get her hands on the candy! It was totally adorable. 

I am pictured here with Laura King, the Senior Director of Volunteers and Community Outreach. 

When I think about how much candy I have processed this week alone it is down right incredible. I did not think it could honestly be done. It involved a lot of hauling, lifting, moving, and driving ALL over DC, Virginia, and Maryland, but the mission has been accomplished. Candy Drive 2014 is officially DONE!!!!

Wednesday, December 3, 2014

Wednesday, December 3, 2014

Tonight's picture was taken in November of 2003. Mattie was a year and a half old. By this point we were already taking Mattie to Fall festivals and he was in love with collecting pumpkins at each outing. He would display them all over our home and use them in play schemes and so forth. Watching Mattie at work was always fascinating and fun because you never knew what was going to happen next, but sure enough, there was always going to be a plan. Thankfully I never had my camera far away to capture these "ordinary" yet now what I would consider magical moments in time.



Quote of the day: Every friend was once a stranger and if you know this, you have to understand that conversations are the beginning of connection. ~ Israelmore Ayivor


Tonight's quote resonates with me. Or I guess Peter would say it SHOULD resonate with me or DESCRIBES me to a T. He jokes with me that people just can't seem to pass me by without having a conversation with me, and that my conversations land up developing into friendships! I don't know why people want to tell me their stories, share their life histories with me, or tell me their problems! I really don't know, all I know is they have for as long as I can remember. Even as a child! I can recall kids wanting me to stay after school, to "consult" with me. I remember our carpool wanting to absolutely KILL me because they always had to wait for me! I was never on time! I wasn't on time, mainly because I was always making time for someone else. 

Today I connected with someone who was a "stranger" at one time to me, but after interacting with her for many years in a work context, we have gotten the chance to get to know each other in a more friendly sort of way. In any case, I have heard about the ins and outs of her life, the ups and downs, the close connections of her family and so forth, and just like any of us when we get invested in someone's life we begin to see patterns in their lives. Yet the story she shared with me today, caught me very much off guard, I wasn't expecting the news she shared. It left me upset for me.

It reminds me once again, how holidays can be blessings for some and yet truly devastating for others. As I saw for my friend today. On top of that, I noticed the Foundation was receiving memorial donations today. Quickly we surmised that Elissa Naiman died after her long battle with lung cancer. Like so many victims of this horrific disease, Elissa never smoked a day in her life and though many of us like to look for causes for why we get ill, some times there is NO logic and NO reasoning. Which is truly frustrating and abundantly scary. The Naiman family have been supporters of the Foundation and avid blog readers and we are deeply moved that they chose to have friends and family donate to Mattie Miracle as a way to acknowledge Elissa's spirit and memory. Here is another incredible example of how cancer has transformed another family forever. Whoever says cancer is JUST a biological disease has GOT IT ALL VERY wrong!!! It is a disease that produces lasting and deep psychological and emotional effects on everyone in its wake.

http://www.legacy.com/obituaries/bostonglobe/obituary.aspx?n=elissa-braga-naiman&pid=173357466&fhid=25324

Tuesday, December 2, 2014

Tuesday, December 2, 2014 -- Mattie died 273 weeks ago today.

Tonight's picture was taken in November of 2003. Mattie was one and a half years old and as you can see loved playing in our kitchen sink! He did not like having the water on per se, but enjoyed being up high, checking things out on the counter and looking out the kitchen window. 


Quote of the day: True compassion means not only feeling another's pain but also being moved to help relieve it. ~ Daniel Goleman 


I am happy to report that we have our living room and dining room back! After over a month of living in a candy factory, I am thrilled. I no longer smell or see piles of candy. It is beyond wonderful! I never thought I would say that, but it is a great feeling. I drove literally all over the place today! My first stop was in Southeast, Washington, DC. My trunk was filled to capacity and so was my back seat. Needless to say, the recipients at my first site were beyond ecstatic to see this candy! The kids were practically jumping for joy! After this large donation, I then headed back home and started the whole process of filling up my wheeled bin and rolling it to my car. I made several trips up and down the elevator and loaded up my car for trip number two out to Reston, Virginia! Overall today, we donated probably over 500 pounds of candy alone! I am feeling lighter already!!!! 

Meanwhile, one of my close friends was hospitalized yesterday and as I was reflecting on her health situation and all she has been through in her life, I decided to send her a song last night through email. Along with a message. Songs have great meaning to me because they can convey messages sometimes that the written word can't seem to accomplish on its own. When Mattie was in the hospital battling cancer, a friend of ours sent us an email with this song and a message. Just like I did for my friend last night. I remember opening up the email and listening to the song. I found the song resonated with me so much that I had Peter listen to it too in the hospital. I bet if I asked Peter today if he remembered this song, who sent it to us, and in what context we heard it...... he would remember it instantly!!! The song arrived in our lives at a crucial time. 

Which is why, on occasion when the "moment" is right, for special people in my life, I too send them "Moments!" I included the song link below. You may watch it and think the song is only about suicide, because that is what the man is initially planning on doing in the video. But to me the song isn't only about suicide. It could pertain to someone going through any life crisis, any struggle. This is something we all can relate to. We ALL have these moments! I like to send this song to other people to let them know that I realize they are going through tough "moments" and I am aware of this, and just like the man on the bridge, I am with them and understand. We all need a friend to remind us that we aren't alone in our moments, that we had good moments in the past, and have opportunities for better moments ahead.  

Emerson Drive - Moments:

https://www.youtube.com/watch?v=HQ3-PHktE34

Monday, December 1, 2014

Monday, December 1, 2014

Tonight's picture was taken in December of 2002. Mattie was 8 months old and riding in his favorite toy/vehicle! We called it "tot wheels!" Mattie rode it around our home like a sports car. He couldn't walk or crawl, but he could negotiate this thing around corners, tight spaces, you name it! He followed me just about everywhere in tot wheels. That evening it started to snow and we opened the door for Mattie to check it out. Like Peter, Mattie was fascinated by the weather and in many cases would wheel himself right out onto the deck to examine what was going on. The cold did not seem to bother him, but he was definitely intrigued by the white stuff and wanted to watch it fall. 


Quote of the day: Enthusiasm is the yeast that makes your hopes rise to the stars. Enthusiasm is the sparkle in your eyes, the swing in your gait, the grip of your hand, the irresistible surge of will and energy to execute your ideas. ~ Henry Ford

I am not sure HOW AN ENTIRE day could slip passed me but it did. I literally was glued to the computer and never left my deck. I spent the entire day revising one of the psychosocial chapters I wrote this Fall and when I completed that task, I spent the remaining part of the day figuring out where the rest of the candy that was sitting in our living room was going. It needed a home and I have been calling ALL around town desperately trying to find a home for it. I am so happy to report that as of tonight, I can now say that all our candy will have a home by the end of the week!!! We are beyond thrilled because moving almost 4000 pounds of candy is NO EASY task and then the logistics of finding homes for it is another magic trick!!! 

Tomorrow morning and afternoon, I will be making donations in Washington, DC and Virginia, so I started loading up my car! This is just the morning's donation in SouthEast Washington, DC. After the morning's donation, I am headed back home to reload the car for the afternoon's donation in Virginia! Needless to say I am getting my workout. Yet the individuals I spoke to on the phone today were truly grateful to be receiving our donations. It was a pleasure talking to them and I look forward to meeting them in person tomorrow. 

Sunday, November 30, 2014

Sunday, November 30, 2014

Tonight's picture was taken in November of 2002. This was actually a rather rare photo of Mattie. He truly did not like being in his baby carrier, especially dangling from the front. He preferred riding on Peter's back. But I loved this puppy hat on Mattie and it was one of my favorite hats I picked out for him. I also notice in the backdrop of this photo was a wonderfully big tree which was in our commons area. This tree has since been cut down. This tree was cut down before Mattie developed cancer. I remember the day it was cut and removed, Mattie and I were both very upset by this, since this was where all our birds liked to nest and perch. Once that tree disappeared, Peter and Mattie decided to plant bushes in its place to fill the void. These bushes have grown to my height and taller! Mattie's memorial bush garden symbolizes his loss and marks where a tree which gave us joy at one time stood tall. 


Quote of the day: There is pleasure in the pathless woods; There is rapture on the lonely shore; There is society, where none intrudes, by the deep sea and music in its roar: I love not man the less, but Nature more. ~ Lord Byron 



Peter and I spent a portion of our day outside on our deck, our balcony, and in our commons area. Cleaning up dead plants and debris, in order to get our garden areas ready for the winter. It was a relatively milder temperature day, therefore we wanted to take advantage of that luxury and accomplish this task while we could. Meanwhile we weren't alone. We had all our bird friends fluttering about and keeping a close eye on us. It is hard to imagine how much they can eat in just one day.... three bird feeders full to be exact! It is hard to keep them in bird food. But they are wonderful winter companions for me, so I work from home and watch them from my window!