Saturday, July 21, 2012

Saturday, July 21, 2012

Tonight's picture was taken in August of 2008. Mattie was home, between treatments, and was visited by Coach Dave and Larry, one of Mattie's kindergarten teachers. Coach Dave had all his high school student team members sign a football for Mattie and they also gave Mattie several other school related gifts. Dave worked at the upper school campus, and Mattie spent only one year at the lower school campus before getting cancer. Therefore, we never had the opportunity to interact with Dave. I think it speaks volumes about Dave's character that he went out of his way to meet us and to help our family when he found out Mattie was diagnosed with cancer. Coach Dave is still an integral part of our Foundation, and our connection started on the day captured in this photograph.


Quote of the day: Let go of your attachment to being right, and suddenly your mind is more open. You’re able to benefit from the unique viewpoints of others, without being crippled by your own judgment. ~ Ralph Marston


For several weeks now I have been milling over the direction of the Mattie Miracle Cancer Foundation for this coming year. I will be talking about this decision and the event we have decided to host and fund in future blog postings, but for now tonight's quote captures an important sentiment to me. Sometimes my own fears can cripple my judgment. I am very territorial when it comes to the Foundation, and when I am uncertain about how an event or collaborating with other organizations could impact us, I move very slowly and methodically. I try not to make any decision based on the whims of others, or even based on my own emotional reactions. After great thought, consulting with others, and assessing what will ultimately be a step forward in the childhood cancer psychosocial field, I finally made a decision. What the decision is at the moment isn't important, what is important is that a decision was made, and I feel very positive about this and what this means for the Foundation.

After a week filled with migraines, I am thrilled to say the pain is subsiding. Peter and I went out today and walked six miles around the National Mall. We saw many wonderful sights along the way which I will share with you below. Typically I am not a rain person, but given the type of intense heat we have been getting, the rain and cooler weather were very welcomed. We were at least able to walk around without feeling like we could pass out from heat and humidity.

It is hard to believe that today I needed both a sweater and a fleece to walk outside. An amazing difference from just two days ago. We walked passed the Lincoln Memorial today, and Peter snapped some pictures.

We continued walking by the water, and we came upon this wonderful group of geese and goslings. However, there was a young boy who was chasing the geese and scaring them. An older man walked up to this boy and explained to him why the boy shouldn't do this. As the man was walking away, I went up to him and thanked him for talking to this boy. I can assure you Mattie wouldn't have gotten away with this for one minute, because scaring animals of any kind was not tolerated. As I began talking to this man, he told me that he has watched these goslings grow up throughout the spring and into the summer. Therefore he felt territorial of them, which was fine with me. In this picture, the bird that was front and center is a gosling. It may be hard to see from the photo, but its feathers are fluffier and the bird is smaller and still developing.

As we continued walking, we were greeted by a Great Blue Heron and several ducks.

Peter captured a close up of the heron. This bird absolutely fascinates me and watching it fly seems like a graceful feat.

Here is a picture of the Floral Library featured on the National Mall. I have driven passed this garden many times, but today we got to walk through it and we checked out each flower bed.

I end tonight's posting with a picture Mattie would have loved. Mattie and I passed this particular reflecting pond on the National Mall many times when he was a baby and toddler. This sight captured me today.. a Mama Duck with her Ducklings! As Mattie would say to me after seeing such a sight.... "this is like you and me!"

Friday, July 20, 2012

Friday, July 20, 2012


For those of you concerned and following along, my CT angiogram was fine today and everything from that test was normal. I will continue with follow up next week, but in the mean time I am still battling a migraine. Therefore, I am limiting my time at the computer, and therefore my postings. It is my hope to return to writing tomorrow. As always thank you for checking in! 

Thursday, July 19, 2012

Thursday, July 19, 2012


Tonight's picture was taken in August of 2008 in the pediatric clinic of the hospital. At the art table, Mattie had created a sculpture out of clay and was in the process of painting it with different color glazes before it went into the kiln. You may not be able to determine the structure he formed out of clay, but Mattie created a drive-in movie theatre. The irony was Mattie never went to a drive-in movie, so I am not sure how he learned about the concept, but this was only one of several drive-in themed clay structures he created. The sequel was entitled "big head." It was a woman who had a melon sized head of clay, who would come to the drive-in theatre and block the movie goers' view. Each of Mattie's sculptures had a story associated with it, and many of these pieces are still on display in our living room.


Quote of the day: When you come to the end of your rope, tie a knot and hang on. ~ Franklin D. Roosevelt


I know I have used FDR's quote before, but I like it. I feel that it captures how I have been feeling. Since the end of May, I would say I have been battling one physical issue after the other. It has been a non-stop battle this summer, and I am getting to the end of my rope with not feeling well. Recently I have been having trouble with breathing and palpitations. I saw my internist, but I knew I needed to see specialists. I see a cardiologist next week, and today I went to see a pulmonologist. I spent two and a half hours in the office today. In that period of time, I had a pulmonary functioning test (a breathing test), a chest x-ray, and a walking test in which I was connected to two pulse oximeters to measure the level of oxygen saturation in my blood.

I sometimes feel when I tell people that I am not feeling well, they discount what I am saying because in essence I am always sick with something. But I know this isn't in my head. So far, every time I have complained on an issue, there was indeed a problem. Today's walking test revealed an anomaly, so tomorrow, I am headed for a CT angiogram. Hopefully soon I will have some more data to help explain why I feel the way I do. However, I felt that this office took me seriously today and wants to help me feel better, so I found a knot to hold onto and it is much appreciated. My doctors are located within the hospital Mattie was born in and was diagnosed in, so returning to Virginia Hospital Center is always bittersweet. As for my CT scan tomorrow, the procedure will be done in the same location where I took Mattie for his x-ray on that infamous July 23, 2008 day in which I learned he had osteosarcoma.

Wednesday, July 18, 2012

Wednesday, July 18, 2012

Tonight's picture was taken in August of 2008. Mattie was in his hospital room, and one of the craft projects given to him was the assembly and design of a tissue box holder. Mattie had to glue wood pieces together to form the box and was given tiles to glue to the wood to create all sorts of designs on the tissue box. The tissue box holder we created together was quite lovely, and it sits on my nightstand today. The box reminds me of that day together. 

Quote of the day: It’s not whether you get knocked down, it’s whether you get up. ~ Vince Lombardi


My day started out fine. I was able to get together with my friend Heidi and her friend Jen for lunch. We had a lovely time chatting and exchanging stories. All three of us are moms of only children, which in a way is a club in and of itself. We just understand each other and the flow of conversation is just very natural. However, as the day progressed the migraine headache I developed on Monday came back in full force. So again, this is a short posting, with the hopes that tomorrow the headache will be gone.  

Tuesday, July 17, 2012

Tuesday, July 17, 2012 -- Mattie died 149 weeks ago today.

Tonight's picture was taken in August of 2008, during Mattie's first admission week to the hospital for chemotherapy. This picture is the sequel to last night's picture that I posted and described. As you can see here, Mattie and Charlotte connected over this unique painting project (which took place in the PICU hallway) and for that moment in time things seemed happy and back to normal. In the beginning play dates at the hospital were very good for Mattie, but as time went on and Mattie became sicker, play dates were more challenging. They became harder because at that point, Mattie knew exactly what he was missing. He knew that after the play date was over, his friends would leave the hospital and go back to their normal routines, and he would remain feeling isolated, infused with medications that made him feel sicker, weaker, and DIFFERENT!


Quote of the day: It is interesting to notice how some minds seem almost to create themselves, springing up under every disadvantage, and working their solitary but irresistible way through a thousand obstacles. ~ Washington Irving


I had the opportunity today to see Ann's mom, Mary. I sat with Mary while she was getting her hair done, and then we all went out to lunch. As I have reported before on the blog, Mary has been basically mute for months. I miss the days of our two way conversations, however, while at lunch out of the blue Mary started singing Happy Birthday to me. Today is not my birthday, but it is in the month of July. How she put two and two together and figured out this was my birthday month is beyond me, but to hear her singing and smiling were priceless. One can say what they will about us, but I stick to my conclusion that Mary and I are connected to each because we both share a profound loss, the loss of our sons.

While sitting with Mary at the salon, a fellow preschool mom that both Ann and I know came in with her children. I initially took part in their conversation, but then quickly removed myself from it because the dialogue was about summer, activities with kids, and school. Things I know all too well about, but things that do not impact my life anymore. Not by choice, but by circumstances. I am not suggesting that moms should stop talking about these normal things around me, but what I have found is some moms seem to know how to integrate these topics into their conversation and yet include me in them, and seek out my input. Which in essence enables me to still feel like a mom rather than so different from them. But this art form and balance are rare. Nonetheless, some of my friends can and do accomplish this which is greatly appreciated.

I have also found that moms who include me in their dialogue are also more accepting of my feelings, try to understand those feelings, and accept what loss looks like for me. They do not deem me as having a problem, but that a problem has been thrust upon me. The outcome of this is I can let down my guard, I can be myself, and therefore feel less defensive. However, when I feel you do not understand the loss that Mattie has on my life, and you continue to chat as if nothing has happened, that is when you lose me. Which is what happened today. I see growth in myself however, because in the past this type of interaction would have greatly upset me. Now, I am used to it, make note of it, and can rationalize that the issues aren't with me, because fortunately I have very open conversations with some friends about their lives, children, and so forth.

I have had many people tell me that they do not know how to talk to someone who has lost a child to cancer. Some parents are going to be more open about this loss than others. Some may want to talk about it, like me, and others may not. However, from my perspective to expect that any of us will remain the same or unchanged by this loss is not realistic. I have been told that sometimes people feel like they are walking on eggshells around people like myself. I can certainly understand why, your feelings are very natural, and I would have them too if I were in your shoes. The death of a child is awkward, devastating, and unnatural, and puts us all off balance. But at the heart of the matter is two things, those of us who lost a child, want others to remember our children and keep that memory alive, and second acknowledge the fact that we will always be a parent to these children. That sounds so simple, and yet I have found it is quite complicated to implement, because I suspect people fear bringing up memories, saying the dead child's name, and making a parent reminisce. However, whether you do these things for us or not, they happen. We do these things to ourselves, and for the most part there is nothing you can do or say  about the loss of a child that will make it worse than not being interested or talking to us about it.

Monday, July 16, 2012

Monday, July 16, 2012

Tonight's picture was taken in August of 2008. The first week Mattie began chemotherapy. As you look at this picture, you might not understand what you are looking at, because at first glance it just looks like Mattie and I together with a tray of paints. However, the dialogue here was actually more complicated than it may seem. Where were we? We were right outside Mattie's hospital room in the PICU. In fact the first room Mattie received chemotherapy in the hospital, also happens to be the same room Mattie died in. An eerie coincidence in my opinion. On this particular day, Mattie's good buddy Charlotte was coming to the hospital to visit Mattie. Mattie was out of sorts, and yet we wanted this to be a good experience for him and for Charlotte. So Linda, Mattie's child life specialist, mobilized into action and asked Mattie if he wanted to paint in the hospital hallway with Charlotte. Mattie agreed to this since he viewed this as highly different and unique. Literally Linda put big sheets of papers all over the floor and also on the walls. So by the time Charlotte got there, she and Mattie immediately united over a normal activity! That day Mattie and Charlotte painted the sun and a rainbow together. I will show you the post-picture tomorrow night, but this was the pre-picture, and as you maybe able to determine, Mattie did not start this project in the best of moods.


Quote of the day: We bereaved are not alone. We belong to the largest company in all the world --- the company of those who have known suffering. ~ Helen Keller


Today I am suffering with a migraine headache that came out of the blue. So tonight's posting will be short to none existent! I would have had Peter write something but he is working from Baltimore today and will be stuck in traffic for hours. There apparently was a water main break in Baltimore and it is tying up traffic for miles and hours. Thank you for checking in with us and hopefully tomorrow will be a better day.

Sunday, July 15, 2012

Sunday, July 15, 2012

Tonight's picture was taken in August of 2008. This was when Mattie began chemotherapy, yet as you can see, it was before any of his surgeries. I always say, Mattie entered the hospital in July of 2008 walking, and after November of 2008, he never walked again. In this picture Mattie was walking JJ, our resident Jack Russell Terrier. JJ and Mattie basically grew up together. Though JJ is a dog, he understood that Mattie was very sick, and when Mattie died, JJ developed depression. He wouldn't eat for over a week and was lethargic. Not a typical quality of JJ's. Even now JJ still comes to to our deck, sneaks under our deck gate, and sits by our front door, looking and hoping to find Mattie.


Quote of the day: People are like stained glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within. ~ Elisabeth Kubler-Ross

Our wedding anniversary was today. Despite not being a phone person, I did speak with both Peter's parents and my parents, and Karen (my lifetime friend and my maid of honor), sent us a very touching email. While I was talking to Barbara, Peter's mom, she could hear that I sounded congested and was having a hard time breathing. This feedback was important for me to hear because I know something is wrong with me, but we can't pinpoint what the medical problem is yet. I continued this dialogue with my parents. Despite it being an absolutely hot and humid day out, I wanted to get out of our home and have a change of scenery. So we went to the DC aquatic gardens. This is the time of year when the beautiful lotus flowers are in bloom, and I try to see this special treat every year. We captured some of our sightings below, sights that we always shared with Mattie. Mattie loved the aquatic garden!

In Buddhism, lotus flowers symbolize mental and spiritual purity. When I came to the gardens this afternoon, I was edgy, but being surrounded by this greenery and beauty, it felt very tranquil. I truly believe being surrounded by the lotus is very therapeutic.

The wonderful part of this garden is you can see the whole life cycle of these Lotus flowers for as far as the eye can see. It felt like 107 degrees outside today, but there were several other people among us photographing this special natural beauty.

In honor of Mattie, we snapped a picture of this Dragonfly sitting of a newly budding Lotus flower. Mattie LOVED bugs, all kinds of bugs, and therefore Peter and I became very good at spotting them in order to point them out to Mattie. We did this for seven years of his life, so some habits are hard to break now.

As some of my readers know, I am a big Monet and impressionism fan. One of Monet's series of paintings featured Water Lilies from his own garden. The DC aquatic gardens is filled with lilies which helps me understand Monet's fascinating with their color and elegance. 

As we were leaving the gardens today, this big Black Swallowtail Butterfly was flying around us and then settled on a purple plant. Peter snapped a picture of this ethereal creature. A creature that somehow captures Mattie's spirit for me.

I would like to end tonight's posting with a message we received from my mom.

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Happy Anniversary to Vicki and Peter by Virginia R. Sardi

Time does go fast and moves even faster the older you get. Your seventeenth anniversary is here and yet it seems like only yesterday you were exchanging marriage vows. There is so much to reflect on, both good and bad. The good is abundantly obvious to all who know you. A natural affinity drew you to each other when you first met and it seemed to all who knew you that you were kindred spirits born to share your lives together. It is no wonder that your love produced a happy marriage that was hallmarked by the birth of your son, Mattie. In the early years, your life together was filled with happiness and achievement, as you created the structure and substance of a home life to inculcate good values to Mattie in his formative years. Together you taught Mattie to love animals and nature so much so that your garden was one of his favorite places to be and fishing with Peter on the Potomac River became the weekend activity of choice. Later on, he was attracted to the tent moth caterpillars and their habits, an interest that was astonishing in one so young. He collected the oak leaves they liked to eat and enjoyed feeding them himself, cleaned their habitat, and observed them grow. He was fascinated by their development and awestruck when metamorphosis changed them into moths. His interest in trees, flowers, and wildlife always sustained him in tough times and is a tribute to your influence on him in his earlier years. When Mattie was first diagnosed with cancer in 2008, destiny put you on a lonely road of twists, turns and obstacles that made facing the future a hideous nightmare of epic proportions. When you lost him, it destroyed your fondest dreams and the normal expectations that all parents have of watching their son reach manhood to make his own place in the world. In retrospect, Mattie's life on earth resembled the changes in the tent moth he once so studiously observed. His earthly body that once was so precious to you was transformed by death, like a bolt out of the blue, into a butterfly that flew away into another dimension of time and space never to be seen again. People, except for parents who have lost a child to cancer, will never know the pain and suffering that losing a child brings to parents left behind. All who know you admire your steadfast commitment to each other and know how traumatic this loss has been and how much soul searching was necessary, as evidenced by your daily blog, to search for a new meaning in life that incorporates the spirit of Mattie. Once again, you have proven that you both have "the right stuff" to weather any storm and create miracles from heartaches, much like our storybook heroes who turn crushing defeat into victory. You took your love for Mattie and with Athena like wisdom, evolved it into a Foundation to benefit children like Mattie beat the odds when stricken with cancer. Love for Mattie gave you the passion and dedication to write a blog that told his story to the world giving others a reason to join you in your fight against the demonic plague of pediatric cancer. You have enlightened your readers by increasing their awareness of the issues that must be addressed before new drugs and therapies to improve their survival are a reality, a reality that is already long overdue. Psychological issues faced by kids with cancer is a topic often ignored but through the blog has become one of the most insightful aspects of the observations and commentaries that you made from watching Mattie's response to disease and treatment. It is now acknowledged that there are psychosocial components to pediatric cancer that are often left untreated. The future for kids with cancer can be made much brighter if counseling becomes a standard part of treatment, a point you make in the blog and in panel presentations. In closing, always remember that your work on behalf of kids with cancer makes you a vital force of good in their troubled world and makes your work as important to them as your advocacy once was to Mattie! Happy anniversary and many more!!!