Saturday, August 2, 2014

Saturday, August 2, 2014

Tonight's picture was taken in September of 2008. When you look at this photo you may be asking yourself.... just what was going on here? Well Mattie was concentrating on a block of clay in front of him. Within this white block were plastic dinosaur pieces buried in it. Mattie had to dig these parts out of the clay. Kind of an excavation type project and then he would assemble the pieces together to build a mini-dino! Mattie loved this type of challenge and this type of project was perfect for the hospital setting because it was sedentary and could keep him busy with his hands and focused on a task. As Mattie became more physically impaired with time and more socially isolated from his cancer treatment, these types of projects were God sends. Notice the pink bucket behind Mattie. This wasn't for just display. This bucket was for vomit, of which it caught lots of it in the initial stages of Mattie's cancer battle until we found the right anti-nausea drugs that worked to manage the side effects of his high dose chemotherapy. 

Quote of the day: My garden is my most beautiful masterpiece. ~ Claude Monet














The above photo came from Claude Monet's garden. Peter and I had the wonderful opportunity to visit this garden with my parents in August of 2012. Monet's garden is located in Giverny, France (which is about an hour from Paris). Monet's garden is indeed a masterpiece. The garden is maintained as if Monet was still there today. As soon as visitors enter the property, they can quickly see Monet's deep appreciation and understanding for color, light, and his diverse cultivation and combination of flowers and foliage. He did not plant in an organized manner, but his plantings matched his impressionistic style of painting. His garden looked like an oil on canvas. If you want to read more about Monet's home in Giverny, I encourage you to check out this link: http://giverny.org/monet/home/.

What got me to focus on Monet and his garden today, I suppose was my own garden! I spent the beginning portion of the day on our deck. Though I resumed my work today, I think the highlight of my day was time on the deck with my flowers, plants, time listening to Mattie's fountains, and being outside. Though my garden doesn't look like Monet's by any stretch of the imagination, I can understand what inspired him to want to create it and to spend time outside painting it. 

Friday, August 1, 2014

Friday, August 1, 2014

Tonight's picture was taken in September of 2008. Mattie was a month into his cancer treatment. He lost all of his hair by that point, but it was prior to an of his limb surgeries. Which was why he was standing and freely moving about! You will notice a cute yellow bird on our furniture in the background. Mattie received this cute fellow as a gift. Well this was no ordinary bird. This guy could sing and dance. In fact, he was so lively that Mattie was flapping around imitating the bird. So Peter got up to join Mattie. I had one yellow bird and two human birds in our home that evening and naturally I couldn't miss the opportunity to capture this on camera! As Mattie's cancer treatment continued on, the gifts that Mattie's care community sent him almost on a daily basis became life savers. Some days those gifts were the things I used to jog him out of a deep depression. The happiness did not last long, but the gifts would give us pockets of enjoyment, which for back then seemed like magical moments. 


Quote of the day: One of the most beautiful qualities of true friendship is to understand and to be understood. ~ Lucius Annaeus Seneca

I can't believe it is August already. It seems to me it was May a minute ago, when I was just packing up Foundation Walk materials. I honestly do not know what happened to the summer. But that is no surprise to me when the summer has been all about work! In addition, to working, I also reflect on the fact that two months ago today my friend Margaret died. 

I went to see my neurologist yesterday and each time I visit him, he makes me fill out a check-in form. Just so he has an update on my health and social concerns. This morning when I reflected back on how I filled out the form, I was a bit surprised at myself. I said that there were NO changes in my social life since my last visit. Which isn't exactly true. Since my last visit I lost Margaret. In fact, if I gave him the full low down on my losses, I would have to say I lost my friend Mary in March, my friend Jocelyn in April, and Margaret in June. However, I am so conditioned by our medical community's lack for interest and respect for psychosocial concerns, that I totally discounted them for myself, and instead responded NO! I am pointing this out because I live and breathe psychosocial issues ALL the time. I write about them daily on the blog, and yet in a health care setting, I do not always advocate for them myself! This is because we operate in a system which treats the patient as just that, a number, a part, NOT of a whole. When you are the patient, it is much harder to integrate these parts for yourself. I am much better at doing this for someone else, which is why I am usually a better advocate for someone else. 

Yet to be fair to myself there are also times where I also do not want to reveal the issues I am contending with such as pain and loss. This doctor already knows about my loss with Mattie, and there are just so many crises and traumas that I want to discuss at once with a medical doctor. 

Seneca's quote I thought was lovely. When I was in graduate school, I had the opportunity to meet my friend, Mary Ann. We became partners in crime in our ethics class together. We loved to analyze cases, issues, and consulted with each other inside and outside of the classroom then and even to this day. We have had our ups and downs in life, and through these times we remain connected. I even learned today how intertwined our lives are over certain dates, like August 5. On August 5, we learned that Mattie's cancer was terminal, it had spread to his liver and lungs. This also happens to be a significant date for Mary Ann too, and I never knew that until our correspondence today. 

My friend Denise, who I also met in grad school, was telling me something quite similar to this two weeks ago. Especially as it related to Mattie's diagnosis day. As I was telling her about how horrible the day was for me and every aspect of that day, she was reflecting on a lunch she and I had weeks prior to Mattie's diagnosis day. So ironically when she thinks of Mattie's diagnosis, she reflects back on that lunch we had together. Like the happiness before the fall. I find it intriguing to see how the gift of special friendships help create a fuller picture of my life, my memories, and thankfully help me feel understood during times when grief seems so perplexing. 

Thursday, July 31, 2014

Thursday, July 31, 2014

Tonight's picture was taken in June of 2008, a month before Mattie was diagnosed with cancer. Mattie was pictured here with Charlotte. Mattie referred to Charlotte as "his girlfriend." Although Mattie was pretty sure he was going to marry Charlotte, he even gave her an engagement ring! Don't ask! After a dental cleaning one day, out of all the toys he could have selected, he decided to pick a plastic ring, with the intention to give it to Charlotte. Which he did out of the blue while I was driving them to a birthday party. I honestly did not know what Mattie was doing until he actually did it, and it was a riot to listen to. This photo was taken in June after they both completed kindergarten. Charlotte's mom and I took them on a boat ride that was pulled by mules through the locks of the Georgetown canals. They had a great and memorable time that day and as you can see, Mattie gave the day a thumb's up! 


Quote of the day: It is curious that physical courage should be so common in the world and moral courage so rare. ~ Mark Twain


I had a relatively computer free day today. Which is a mixed blessing. I need it to allow my eyes to heal but not being able to focus and work on what I need to get done, makes me more edgy. July has been an intense month of researching and writing. I can be a very disciplined person who can sit still and concentrate for hours. Which is great if you want me to get a lot of work done, but it does come at a price. I remember when I was in graduate school, the constant joke was....... does Vicki ever sleep? Mainly because I had a way of getting a lot done and though I may look small and weak, I actually am like a Clydesdale. I am deceptive which catches people off guard. 

I met up with my friend Tina today. Tina and I are all about conversation and food. We not only had lunch, but various fun snacks along the way, which included a stop at Del Ray's Dairy Godmother. A frozen custard store in Alexandria, VA. But the irony of going to Alexandria City is I can never go there without bumping into people I know! While there I met Mattie's kindergarten teacher, Leslie, and Mattie's preschool teacher Lana! The world there is SMALL, despite the fact that geographically it isn't a small place at all. 

Of course when I meet Mattie's teachers I think of Mattie, our time together at school, and I wonder where we would be now if he were alive today? Of course I have no answers to these questions, naturally because they are not answerable, and yet I continue to wonder.    

Wednesday, July 30, 2014

Wednesday, July 30, 2014

Tonight's picture was taken on November 5th of 2008. Mattie was pictured with Linda, his child life specialist and Lesley, a child life intern. As you can see Mattie painted a little lamp for me. A lamp which I still have and sits by my desk even today! All of Mattie's artistic creations that he made in the hospital for me were priceless and are in essence a part of his legacy to us. Given Mattie's physical stance in this photo, you can tell that he already had one limb salvaging surgery. His right arm was bandaged and not pulled through his pajamas, but he was still walking. It was after his second limb salvaging surgery when he lost his mobility that all hell broke loose and we truly lost the spirit of our six year old son. Instead depression, anxiety, and PTSD took over. It is very hard for me to recall Mattie standing, walking, and running. Instead, I recall from November 2008 onward, when Mattie was wheelchair bound and need assistance with practically everything. 

Quote of the day: People come into your life for a reason, a season or a lifetime. When you know which one it is, you will know what to do for that person. When someone is in your life for a REASON, it is usually to meet a need you have expressed. They have come to assist you through a difficulty, to provide you with guidance and support, to aid you physically, emotionally or spiritually! ~ Glen Rambharack

Peter and I went to Georgetown University Hospital today for two different reasons. The first reason was to meet with Linda, Mattie's Child Life Specialist and to shoot a video about child life services. A few months ago, my friend in cancer, Ilona, forwarded a video to me. She wanted me to see what a Georgetown child life intern had created to highlight the child life services offered at the hospital. I must admit when I saw the video I thought it was cute, but as I let the content sit and become absorbed in my head, I became less enthralled with it. Why? Because child life is more than just fun and games! Child life is substantive. It isn't just about parties and costumes. In fact, so much about child life centers around education, normalizing the experience for the child, distracting children during procedures and scans, using medical play, and helping children and families advocate for themselves within a medical system. That is only to name a few of the things child life accomplishes in a given day. In many ways child life is an imperative psychosocial service and no family should go through a hospitalization without such a professional! Therefore I asked Linda if it would be possible to make another video highlighting all aspects of child life, and she happily agreed! Which is what Peter and I participated in today. 



We sat outside with a professional video crew today! Mattie's memorial brick was in the background. You couldn't see it, but we knew it was there. In fact, the bench we sat on to tape our video segment belonged to our friend Tim (it was a memorial bench for his mom, a dedicated nurse and administrator at Georgetown). Tim just retired from the Hospital this month, but he was one of our biggest fans. Tim was an associate administrator of philantrophy and was the generous person who donated the Mattie brick to the Hospital! So it seemed so fitting that we would be sitting on his mom's memorial bench, which was selected for us today, we did not pick it. The interview lasted 40 minutes. We were asked all sorts of questions about Mattie, his disease, the impact on us, Mattie's loss, why we contribute to Georgetown and to child life, and in many ways the questions were truly meaningful. The interviewer and cameraman felt we did a great job. We shall see. I know Linda couldn't look at us, which is understandable since this is all very emotional for the three of us. We battled this road together. 

Raising money for child life is very personal for Peter and I. We are committed to Linda, who happens to be connected to Georgetown. Linda walked a very difficult road with us on a daily basis and cared for us in ways that are hard to describe and give words to, but she was there in unimaginable ways. Ways that I will never forget, and ways that inspire me to work very hard every May to raise money to support the Mattie Miracle Child Life Program fund. A fund which we started in 2011 at Georgetown University Hospital. 

It is funny though, as Peter and I sat together on a bench being filmed, we occasionally got stymied or tongue tied. It is hard to talk about emotionally laden content. It only happened a couple of times, but I am very aware of this problem with myself now. I can no longer talk extemporaneously about very emotional content especially when it relates to Mattie and his death. Well I can, but don't expect me to get my point across in a succinct manner. Which is why I must have notes and be well rehearsed. Which you can do when delivering a speech, you can't do that when being interviewed! But Peter knows this about me, he has a way of helping, managing to give me more time when people throw questions at me that catch me off guard. He always answers first, even when he may not have an answer! He wants me to just sit there and think, pause and get composed! VERY appreciated and thoughtful, and he can read when I need these moments or when I can freely speak. 

After the interview, we headed to our second meeting, which was a philantrophy meeting. At that meeting, Linda presented me with Georgetown Cupcakes! Which are my favorites! She gave them to me for my birthday. Linda introduced me to Georgetown Cupcakes when Mattie was battling cancer. Georgetown Cupcake is very generous to the Hospital and I know we all benefited from their generosity over the years. Needless to say, these little loves brightened my day and they reminded me of Mattie today, as does seeing Linda. When the interviewer asked me why I come back and do what I do at Georgetown, the simple answer is I do it for Mattie. I do it in memory of my son. Being at Georgetown helps me reconnect with Mattie. Somehow I feel his presence most at the hospital. Go figure, I know!

After our meetings, I had Linda walk me down to the adult outpatient cancer unit. I wanted to see how chemotherapy was administered on an outpatient basis to adults. I recently saw how this was done at another institution, and I wanted a comparison. I will share my commentary tomorrow on this experience, but if I think childhood cancer has a way to go psychosocially, the adult cancer world is in the dark ages. 

Tuesday, July 29, 2014

Tuesday, July 29, 2014 - Mattie died 255 weeks ago today.

Tonight's picture was taken on July 29 of 2008. Six days after Mattie was diagnosed with cancer. That day we took Mattie to Roosevelt Island. As you can see he was playing by the water and in the sandy dirt. We even brought with us his battery powered boat! Typically we wouldn't float that boat in the Potomac River, but after Mattie was diagnosed with cancer, there were a lot of FIRSTS for us!

Quote of the day: Happiness is a butterfly, which when pursued, is always just beyond your grasp, but which, if you will sit down quietly, may alight upon you.  ~ Nathaniel Hawthorne


Many years ago, when I first met my friend Ann, she introduced me to her cousin, JP. JP is older than I am, he lives in Massachusetts, and to some people he may seem to stand out as being a bit different. Specifically as having a special need. Each summer he spends several weeks visiting Ann. Their tradition together and something JP looks forward to. Mattie went to a preschool that embraced differences and therefore a percentage of children with special needs were integrated into each of the preschool classrooms. Based on my experiences with these children, raising Mattie, and my own clinical experiences I have found that individuals with special needs tend to be very perceptive and extremely sensitive to the world around them. They also tend to know who they can and can't trust, who is making fun of them, respects them, and truly wants to spend time with them. You may think these are EASY skills, but I know many adults would misread these CUES all the time in the world around them constantly!!!

I had the wonderful opportunity to have lunch with JP today and we spent part of the afternoon together gardening. The refreshing part about JP is he appreciates time you spend with him and he has no problem telling you that this time with him makes him happy! WOW, when do we say such simple and yet meaningful statements to each other? We could all learn a few things!!!  

When I got home from my meaningful afternoon, I received another meaningful message! My friend Mary Ann had called me to tell me she had an unusual butterfly encounter! So now I have nicknamed her the "butterfly whisperer!" She was at her neighborhood pool today and when she got out of the pool she was greeted by a butterfly that looked like the one in the photo. I looked this fellow up and found out he is a Spicebush Swallowtail! This swallowtail landed on her leg and sat there for several minutes, while she chatted with him. She told the butterfly about Peter and I and how we missed Mattie and I swear if this butterfly could have talked back with its wings, it did! It continued to sit there and flutter away and the reason I know this was Mary Ann called me while some of this was occurring. I was getting live playback! Mary Ann was wearing orange today, a Mattie Miracle color, and some how it seemed very symbolic that a butterfly, a symbol I associate with Mattie would be attracted to something orange (a Mattie Miracle color) and this all should happen around the anniversary of Mattie's diagnosis! Then again Mary Ann and I always look for signs in nature! Either case, I am so happy my butterfly whisperer shared her message with me today! I accept all flutterbys from Mattie and how nice that it is also on a Tuesday (the day of the week that Mattie died)!

Monday, July 28, 2014

Monday, July 28, 2014

Tonight's picture was taken in July of 2008. Around the time that Mattie was diagnosed with cancer, Peter and I were in the Hospital clinic with him. Also with us in the clinic's library were his oncologist, social worker and art therapists. We strategized a way to explain Mattie's cancer to him. Right from the beginning Peter and I felt it was important to tell Mattie the truth about his condition in an age appropriate manner. His treatment was going to be aggressive and brutal, and therefore his buy in was going to be vital. Mattie LOVED bugs, and yet he most definitely did not want bugs floating around in his body. Therefore we designed a "bone bug" made out of clay to represent what was going on inside his body. We explained that his body was being attacked by bone bugs and that the only way to kill the bone bugs was to take medicine and to eventually remove them from his body, ie, chemotherapy and limb salvaging surgery. When Mattie was given the choice as to what to do with the clay bone bug, he grabbed a hold of it, and stomped on it with his foot, to kill it. Basically a symbolic representation of what chemo and surgery would eventually do in his body. It was a creative way to explain his cancer to him and throughout his battle, we always referred back to the bone bugs and when he discussed his cancer with others, he too used that language to explain his bone cancer. 

Quote of the day: 

The glory of friendship is not the outstretched hand, nor the kindly smile, nor the joy of companionship; it is the spiritual inspiration that comes to one when you discover that someone else believes in you and is willing to trust you with a friendship. ~ Ralph Waldo Emerson Last night my friends Tina and Ann held a birthday party for me. Ever since Mattie died, I have celebrated my birthday with friends in a party format. Perhaps though we don't talk about it, maybe others are listening when I say that my birthday falls two days after Mattie's diagnosis day!!! Maybe others can understand why it is hard for me to be joyous and celebratory, and therefore would need help negotiating through the funk that July ensues! The last birthday party I had though was in 2011. Mainly because parties have become harder and harder for me to attend. Over time, I feel as if I no longer fit into any group per se. I no longer identify with my former group of mom friends, I do not fit into my cancer group of mom friends, and for the most part I do not even identify with moms who lost children to cancer. Mainly because many of them are raising other children. So where does that leave me? Good question?! I suppose after a two year hiatus from parties, Ann and Tina strategized and felt the need to have a party in a way. If you asked them why they held the party for me, the answer would be different for each of them, I guarantee you, but ultimately at the end of the day, what the party did was it served as a reminder to me that even though I may not always fit in, I am surrounded by a truly caring group of people who appreciate me. So no other gifts were necessary, that is the GIFT. But it is painful and bittersweet to know that I no longer interact with this group on a daily basis like I once did.

There were around 26 people in attendance last night. The party was held outside, which was right up my alley. I love the summer heat and I suppose everyone else was fortunate enough that it wasn't an incredibly humid night out. The party was in Tina's backyard, which is a lovely setting, and I am grateful to Tina since she has allowed me to use her house to host two other events, one was in 2013 and the other was in March of this year for the Foundation. The cake in front of me was a Carvel cake. Which means nothing to anyone in the DC area, but means a lot to anyone who is from the New York area. I grew up on Carvel ice cream cakes and being that my birthday is in July, it was a tradition to have a Carvel cake. They aren't so easy to find in DC other than in the grocery store. But Ann tracked down a Carvel store and surprised me with the cake. Meanwhile this one candle was hysterical. As I blew it out, Bob kept relighting it! I think the goal was to have me blow it out for the number of times that coincided with my years! Fortunately he stopped after 3.

Vicki with the party hosts, Ann and Tina. 

Peter snapped this photo while I was at the other end of the pool blowing out the candle on the cake. People were gathered all around the pool last night. It was a beautiful evening and Peter and I were very appreciative of the attendance and efforts of all of our friends. Peter summed it up best for me when we got home...... "you have quite a group of friends, and they truly love you!" 

Sunday, July 27, 2014

Sunday, July 27, 2014

Tonight's picture was taken July on 23, 2008. This was the day Mattie was diagnosed with cancer. A day Peter and I will never forget. Our world was changed forever. That night we came home and Mattie asked if he could display Christmas lights on our deck. Now if cancer hadn't come into our lives, the most likely response would have been "NO!" But cancer put everything into perspective. So out came the lights and no matter how crazy it may have looked, we put up our displays. It brought cheer and color to our world. A world which had just collapsed around us. Though Mattie was only six years old, he was bright enough to know that great change and trouble were ahead. 


Quote of the day: Sadness is but a wall between two gardens. ~ Khalil Gibran

When we visited Thomas Jefferson's Monticello this week, we bought a Butterfly flower plant in the gift stop. Thomas Jefferson cultivated so many different varieties of plants which is most likely why the gift shop features a whole garden area. In any case, it is no wonder that the butterfly plant caught my attention. These plants had all sorts of flying creatures around them! Particularly butterflies. I brought one home and planted it today next to the roses. We shall see when it blooms their lovely orange flowers if it attracts any monarch butterflies (which is what it is known to do!) in the city. 

We spent the entire day at home trying to relax and we also tended to our garden. Though this outdoor space is small in comparison to some gardens, we have a lot growing on it. All sorts of herbs and tomatoes. You wouldn't believe how many cherry tomatoes Peter can harvest every week. At least a whole colander full. To me it is a special treat and with Mattie's fountains going, it is a very tranquil place to sit right in the middle of the city! You may notice a tall green plant right next to the table and chairs (the right hand corner of the photo). This is the butterfly white ginger lily plant we brought back with us from the Elizabethan Gardens in the Outer Banks. It seems to be thriving and in fact it looks like it could produce flowers in August as promised. The Gardens told us that when this Lily flowers, the fragrance is intoxicating. The verdict is still out!