Friday, August 5, 2011

Friday, August 5, 2011

Tonight's picture was taken in August of 2006. As you can see Mattie was proudly wearing his Outer Banks, NC t-shirt and seemed so happy. Mattie loved his trips to the beach, but I would say he loved trips in general. Mattie enjoyed the thrill of seeing new things and adventure. However, no matter where Mattie went he was always surrounded by cars, trucks, and trains. Anything moveable!


Quote of the day: Time heals old pain, while it creates new ones. ~ Proverb

We are safely in Seattle. It was a very long travel day with our flight being delayed for over two hours. Thankfully the flight was smooth and uneventful, however, I was totally out of it since I began taking Dramamine. The flight was five and a half hours long, and I would say I couldn’t keep my head up for at least five hours of the flight. I rarely sleep on a plane, so I know that Dramamine was the culprit. As I said to Peter, I rather feel drugged than motion sick any day.

Along our journey into Washington State, I handed Peter the camera to take some pictures outside the plane’s window. Up in the air, things were so clear and sunny and we had amazing views of Mount St. Helen’s and Mt. Rainier. Since I wasn’t sure we would see either of these sights on land, I am happy Peter captured them in the air. I hope you enjoy them too!

When we landed in Seattle, we took a shuttle bus to the hotel. We rode the bus with other cruise passengers and traded travel stories of the day. One couple, who had to be around our age, began chatting with us and said they had never been on a cruise before, because they were always childrearing. We acknowledged that but did not say much else. She then turned to me and said that I didn’t seem excited to be going on a cruise. She was waiting for a response to her comment. It took great strength and fortitude not to want to bop her on the head. She did not know me and yet was judging me by her observations. I held my tongue and did not give her the mouthful that I could have easily given her. Instead, I told her we were simply tired from the day’s travels. After all, giving her a lesson in pediatric cancer and loss didn’t seem exactly right or timely. Yet I think today’s interaction illustrates that it is easy to misjudge a person and not to truly understand the full magnitude of what someone else is living and going through. After Mattie’s death, I do make a conscious effort to understand and imagine what others may be going through that would explain the behaviors I am seeing.

We met up with my parents and had dinner by the water. We saw all sorts of ships passing by and had a chance to chat up with each other. We ended the evening by seeing the famous Seattle Space Needle which was just minutes from the restaurant.

Thursday, August 4, 2011

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Thursday, August 4, 2011

Tonight's picture was taken in September of 2008 in Mattie's hospital room. That was Mattie's second month of chemotherapy and his first month of the entire year in which he wasn't in school. Mattie's "girlfriend," Charlotte came to visit Mattie that day. For a six year old to enter a room with beeping IVs, to see her friend without his hair and looking so weak, was NO easy accomplishment. Yet Charlotte did it and though Mattie was depleted of energy to physically play, Charlotte crawled onto his bed right next to him and they watched Scooby Doo together. In the midst of all of this, Tricia (one of Mattie's HEM/ONC nurses and a nurse whom I feel very attached to) was flushing Mattie's IV lines and trying to do this on the side so as to not get in Mattie or Charlotte's way. However, what I love about this picture is it captures and illustrates the word, FRIENDSHIP, to me. A friend who cared about Mattie more than worrying about how she felt about being in a hospital and in a hospital room.

Quote of the day: A Thousand Words Can't Bring You Back, I Know Because I Tried And Neither Can a Million Tears I Know Because I Cried. ~Author Unknown

I appreciate so many of my friends who have written today to wish us a good trip! As we leave tomorrow afternoon, I find I am still packing and trying to get organized. Typically I am a quick packer and have a solid understanding of all the things needed to bring with me. Going to Alaska is a bit more obscure for me and therefore it has caused me to think more and pack more methodically. Peter and I most definitely need to get away and to do something very different. Peter certainly needs the break from his intense 12 hour work schedule, and I need a break for more emotional reasons. Needless to say, family vacations are hard for all of us, because the focus of our family is now gone. Mattie was the center of attention for us and for my parents, and going on vacation now means something very different than going on vacation with Mattie.

My friends Tanja and Katharina recently went to Alaska, and they both told me they felt very connected with Mattie while they were there. They sent me pictures along the way and wanted me to know about their sightings and how these sightings reminded them of my son. Tanja and Katharina are in Germany, yet they both write to me while on vacation to let me know that they are thinking of me. I find this very meaningful and very sensitive, since they know that the summer months are particularly challenging for me. They reach out to tell me what they are doing but also share a thought or feeling with me about my situation. I am writing about this because I guess what I am trying to say is it means a great deal to those of us who are grieving to know that we haven't been forgotten and that friends reflect on our situation no matter where they are. Today, Tanja and Katharina wrote to wish us a safe trip and to tell me to be open to signs from Mattie. I am always open to these signs!

Each August, Ann's cousin visits her from Massachusetts. Throughout the year, I periodically have the opportunity to talk with him on the phone. Each time we talk he reflects on how much he is looking forward to spending time with Ann and the good time he will have when he visits. Within these conversations he always asks me if he will see me when he comes into town. Since August is a long way away, some times during the fall or winter months, it is hard to know whether I will be here when he is visiting. Nonetheless, this year I promised him on the phone I would be around, so I made every effort possible to try to plan our travels around his two week long stay. Fortunately this was his first week here, and I was able to see him twice. We got together this morning for breakfast and what I love about Ann's cousin is he appreciates eating and connecting with people. Two things we share in common!

I am signing off for now. Next time I will be writing the blog, I will be in Seattle.

August 3, 2011

August 3, 2011

Tonight's picture was taken in October of 2008 at our home, after Mattie was recovering from his first limb salvaging surgery. Mattie's preschool friends gave him a dragonfly kite. I recall during difficult moments we would turn to Mattie's "Team Mattie" gift pile and open up something new. That particular evening, Mattie opened up the kite and we went outside to fly it. Mattie could only use his left arm, since his right arm was in a sling from surgery. However, getting outside and moving around gave us all a few minutes of normalcy. Based on Mattie's love for bugs, it seemed quite fitting that he was given a dragonfly kite! 

Quote of the day: It is the peculiar nature of the world to go on spinning no matter what sort of heartbreak is happening. ~ SUE MONK KIDD

What a great quote! It is simply stated but incredibly true! Any one who has experienced a loss, a trauma, or great life change will immediately identify with it. Mainly because while your heart is breaking, your life has collapsed around you, and physically and mentally you are beyond depleted, the world around us GOES on. I suppose that is a good thing, because if everyone felt and reacted as a griever does, it would be a sad commentary. Nonetheless, for myself and others who are grieving, it leaves us confused and simply upset at times that we are misunderstood and that our heartbreak isn't shared and normalized.

Today was my last class of pilates for several weeks. I took three classes in a row with my friend Christine. I loved the teacher and I found her to be a great motivator and very concerned for her students' wellbeing. I have no upper body strength, so the teacher literally had to help me with some of the pilates apparatus. She told Christine that she LOVES holding my hands because she has never felt skin so soft. That comment made me laugh, because I guess while she is talking about my skin, I am focusing upon a connection. I think as adults we are quite intimidated by physical contact between friends. By physical contact I mean holding someone's hand or giving them a hug. These are special connections between friends and yet many of us withhold these connections for various reasons. I really never thought much about this until I was aware of how I felt when the teacher held my hand. It is actually a very supportive and nurturing gesture between two people.

I also know this type of connection was something I had with Mattie. As a mom being supportive, nurturing, giving hugs and showing love and affection are part of the role. Now that Mattie is gone, this part of myself that was developed during Mattie's seven years, has no place to go. Which is most likely, I would imagine, why nurturing Ann's mother, Mary, and today's physical connection means more to me than the physical act of holding someone's hand. As I think about this, in times when I am most upset Tina and Junko, are friends who also hold my hand. Extending one's self physically (to hold hands) while seeing someone in pain, almost is saying to the griever that you aren't experiencing this loss per se, but you want to connect with us on a meaningful level and understand.

I had lunch today with two of my friends, Carolyn and Mary. Carolyn took Mary and I out to lunch for our birthdays. Mary's birthday was July 23, a day neither of us will forget. This is the day Mattie was diagnosed with cancer, which is why Mary's birthday remains on my mind. We had a nice time catching up and sharing summer stories.

I would like to end tonight's posting with two messages. The first message is from my lifetime friend, Karen. I had been emailing Karen back and forth yesterday about my feelings associated with my most recent hospital visit. I told Karen I was upset that so many of Mattie's nurses are no longer working there and in a way the institutional knowledge of his battle is gone. Her response caught my attention. Karen wrote, "He is there Vicki. His art is on the ceiling. His name is on the snack cart to remind parents and kids they aren't alone in this battle."

The second message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "I fully believe that Mattie can communicate with the two of you.... by snake skin or mouse/toy or clock maneuvers. Thinking of you this Tuesday and everyday."

Tuesday, August 2, 2011

Tuesday, August 2, 2011 -- Mattie died 99 weeks ago today!

Tonight's picture was taken in September of 2008. At that point Mattie was into his second month of chemotherapy. Since I visited Georgetown University Hospital today, I couldn't help but fondly remember some of the people who made Mattie's days more bearable. These three women, Linda (Mattie's Childlife Specialist), Jessie (Mattie's Art Therapist), and Jenny (Mattie's Art Therapist) will never be forgotten. I honestly do not know how I would have made it through 15 months of hell without them. They were Mattie's normalizing forces and helped him play and talk, under the worst of circumstances. However, what I learned today, ONCE again, is that things never remain the same. Which for a mom who lost a child to cancer, this can be very upsetting and unsettling. I will discuss this feeling below.


Quote of the day: The human heart dares not stay away too long from that which hurt it most. There is a return journey to anguish that few of us are released from making. ~ Lillian Smith

As today is Tuesday, and marks the 99th week of Mattie's death, it seemed almost appropriate to visit the Hospital. I not only visited the Hospital, but walked through the unit, the hallways, and sat in the family lounge. All places that were once my home. I lived within this Hospital for over a year, and at one time the Hospital was my home. It is hard to imagine on some level that I no longer belong there, and it is even harder to imagine that there is staff there who DO NOT know me, who do not know what Mattie battled, nor what we are left behind to live with.

In typical Georgetown fashion, parking was a royal problem today. But frankly I dealt with much worse on admission's days when I had bags, Mattie in a wheelchair, and Mattie feeling sick. Back then traversing the parking lot made me absolutely insane. I can remember this SO well and how sick Mattie was during those visits. Today, I parked on the bottom most level of the garage, and literally dragged Mattie's red wagon filled with chocolate up several floors of the parking structure. By the time I got up to the top, I wanted to say I had my exercise for the week. Outside the Emergency Room entrance, I met Marisa. Marisa was one of Mattie's caregivers during the summer of 2009, and is working with Peter and I on various Foundation projects this summer. Marisa and I delivered LOTS of chocolate to Linda (Mattie's Childlife Specialist) and Alice (Pediatric Nurse Administrator). Actually in total the tally of donated chocolate from my birthday party is down right impressive!!!!
 

Chocolate Bars 390

Mini Chocolate Bars 162

Individual Chocolate Candy Packs 56

Bags of Chocolate 19

Naturally I couldn't deliver chocolate without taking pictures of the Snack Cart. As a reminder, the Mattie Miracle Cancer Foundation is one of the sponsors and funders of this snack cart, which is offered to inpatient pediatric families twice a week. The cart provides nutritious snacks, chocolate, chips, and drinks at NO cost to families. The drawers of chocolate you see here were provided by Mattie Miracle. This is not even one third of what we donated today. The rest of the chocolate is being stored in locked cabinets.

Pictured with the Cart are Vicki, Alice (Pediatric Nurse Administrator), and Marisa (Mattie Miracle Intern)

Pictured with the Cart are Linda (Mattie's Childlife Specialist), Alice, and Marisa

After meeting about the snack cart, Linda, Marisa, and I chatted for a bit. I have some other ideas that I wanted to run passed Linda and it is my hope that we can continue to brainstorm them before I write more about them. Then I sat with Marisa, while she tried to explain Twitter to me. I have enough trouble with Facebook, must less Twitter. But I realize social networking is here to stay, and we as a Foundation have to have a presence. So I will be learning quickly from Marisa. The Foundation has a Twitter account and it is my hope that those of you who Tweet, will follow us by going to our address......... MATTIEMIRACLECF

Here are my observations from today's visit. A few weeks ago Peter asked me if I noticed that all the nurses and staff in the in-patient HEM/ONC unit were unrecognizable. Frankly I hadn't noticed this, but his comment has lingered with me. So after my meetings today, I went to the unit because I heard that Tricia and Miki (two of Mattie's outstanding HEM/ONC nurses) were working there. As I strolled into the unit with Mattie's big red wagon, I was like a deer in the headlights! I recognized NO ONE. I did not recognize the residents, the nurses, or the staff. It almost felt like I was on the wrong floor. A nurse came over to ask me if I needed assistance, which clearly I did! She found Miki and Tricia for me. I chatted with both of them for a while, and then Tricia was called away to a patient and I remained talking with Miki. Miki confirmed my observations. Sarah Marshall, Katie, Kathleen, Erin, Nicole, Laura, and CR are no longer working in the HEM/ONC unit! The only HEM/ONC nurses who work during the day shift that we know are Tricia and Miki, everyone else is new. Perhaps to an outsider reading this, you are saying to yourself this makes sense. There must be great turn over in pediatric oncology, based on the hours, the subject matter, and the incredible physical and emotional demands. I would agree with all of these things, however, there is an emotional angle for a parent regarding this turn over. These women became like family to me. We shared our days and nights together during the most challenging of circumstances. It is like going to war and we all served in battle together. It provides a form of closeness that is indescribable. Not seeing these seven women up on the HEM/ONC unit saddens me greatly. It saddens me because we lost people with the institutional knowledge of Mattie and his battle. It wasn't the physical unit that made this place our home, it was the people, and now that so many of them are gone, in a way it feels like a loss of a grand magnitude for me.

I have no doubt even if these seven women are not at Georgetown per se, their memories of Mattie will always remain with them and they will carry them to whatever job they enter. But the long and the short of it is, I miss them, and I miss having a network of people there who remember and understood what we went through and are going through now. Grief work is about remembering and with each passing day there are fewer and fewer people who want to hear my stories or hear about my feelings. Seeing this visual of a nursing network now gone was a little hard to take.

The second observation also took place within the pediatric unit. As I was talking to Tricia and Miki, I saw a boy who must have been about nine years old, walking the hallway with his mother. He clearly was in pain and his facial expression of agony brought back incredible memories to me. I couldn't take it and asked Tricia and Miki whether this boy had cancer. When I found out that he didn't, I instantaneously felt better. I felt better because I knew his condition was curable and temporary. Not that seeing his pain should lessen how I feel, but somehow something inside me snapped, and viewed his pain as natural and part of the healing process. Rather than a sign of disaster and pending death. I guess as I reflect on today, I can't get over how two simple observations (nursing staff and this little boy) could send me for a loop and cause me to have so many mixed emotions and feelings.

Monday, August 1, 2011

Monday, August 1, 2011

Tonight's picture was taken in July of 2007. Mattie was right in the middle of our living room creating with Legos. A common occurrence. He designed his version of a cruise ship, including two tall smoke stacks. I miss seeing his creativity and his beautiful smile.


Quote of the day: Grief fills the room up of my absent child, lies in his bed, walks up and down with me, puts on his pretty looks, repeats his words. ~ William Shakespeare

Today was a busy day filled with chores and other activities to get ready to go on vacation. Peter and I are leaving for Seattle on Friday to meet up with my parents and then we are all going on a week long cruise of Alaska. Trying to think of packing for cooler weather is a great challenge for me, especially since it has been in the 100's in Washington, DC with high humidity. I began my day with processing Foundation paperwork and contributions and then sat down for several hours to set up the blog for our 10 day vacation. Setting up the blog means uploading pictures of Mattie each day and selecting a quote of the day. By having this pre-loaded, it makes writing the blog on vacation a bit easier. Going out of town also means making sure Patches is well taken care of and of course that my garden doesn't die. We lost 50% of our flowers during our trip to the beach in June, so this time around, my hope is the sprinkler system will work! Some how it seems just devastating to come home to dead plants. I would say that June and July have been very difficult months for us this summer for various reasons. Most of the reasons I do not feel like elaborating on right now. So in a way, getting away and out of Washington, DC and our routine will be very good and needed for us. Not that traveling enables us to forget Mattie and our grief, because it doesn't. This loss is always present and it goes with us everywhere like a fifth appendage. Nonetheless, living in a home filled with memories and working on ways to help other families with cancer makes the loss real for us each and every day.

Sunday, July 31, 2011

Sunday, July 31, 2011

Tonight's picture was taken in April of 2009. Five months before Mattie died. At that particular point in time, we were excited that chemotherapy was almost complete and we had this delusional notion that we were going to work on rehabilitating Mattie and develop some sort of semblance of normalcy in our lives. That of course never happened. In fact, this is NOT the picture I wanted to post tonight. I was desperately looking for the picture of us with Mattie at Nationals Baseball Stadium from the Spring of 2009. Peter and I went to the ball park today, this picture from 2009 has been in my mind all day. However, I can't seem to find it. In fact, as we entered the park today, all I could think of was Mattie. Not because Mattie loved baseball or even the park, but because I remember taking him to the stadium when he was wheelchair bound and with a bald head. I distinctly remember all the stares and basically how rude people were to him. This feeling of disgust remains with me today, so much so, that as Peter and I were walking into the park, I vividly recalled our visit with Mattie. The picture I posted tonight was taken blocks from where we live. Mattie always loved this fountain, mainly because the amount of water shooting up in the air is impressive. Naturally whenever we pass this fountain, we think of Mattie. Of course we don't need the fountain or the ball park to do this, it is our usual state of consciousness.

Quote of the day: Mourning is not a sickness or weakness, mourning is strength. ~ anonymous

To the average person reading tonight's blog, I am sure you are looking at this picture of Peter and think it looks innocuous! After all he looks happy standing in front of the empty stadium. But this picture is like returning to the scene of the crime for me. The day we took Mattie to the stadium in the Spring of 2009, I took a picture of him and Peter in this exact location, and with the same content.... an empty ballpark. I snapped today's picture in the same location and with the same subject matter. I am not sure why, but I felt compelled to do so! Unlike when we were with Mattie, today, NO ONE was staring at us and everyone around us just accepted us. It may not seem like I am saying much, but I am actually making a PROFOUND statement and observation.

I must admit I am married to someone who loves baseball and is OBSESSED with the Boston Red Sox. I unfortunately have neither interest. However, our friends gave us amazing tickets today to the stadium to see the Nats versus the Mets. I took a picture of Peter right by our seats, behind home plate. Despite the incredible and intense heat, I did enjoy the game. I enjoyed it because of where these seats were located. Being right behind home plate made me feel as if I were part of the game. I wasn't distracted by all the extraneous other nonsense around me. So Peter was thrilled because I was actually able to be engaged in something he likes so much. I am grateful to our friends for giving us these tickets, for introducing me to a whole new way of seeing a ballgame, and for the weekend diversion. Sometimes weekends are hard for us, but this was a great escape and I loved the people watching component!

The Presidents Race is a promotional event held at every Washington Nationals home game at Nationals Park during the fourth inning. The Presidents' Race features four former Presidents of the United States, namely those found on Mount Rushmore: George Washington, Abraham Lincoln, Thomas Jefferson, and Theodore Roosevelt; their nicknames per the race graphics are George, Abe, Tom, and Teddy. The Presidents are dressed in period costumes and topped with giant foam caricature heads. Occasionally, they are dressed in Nationals jerseys with the number on the jersey reflecting what number president they were (1 for George, 3 for Tom, 16 for Abe, and 26 for Teddy). Teddy has notoriously never won a single race as of yet.

At today's game, Abe Lincoln Won The Race! This race gets me every time, and I just want to get down on the field and drag Teddy Roosevelt across the finish line! I suppose it is human nature that we all want to cheer and coax the underdog!

This afternoon, I went to visit Ann's mom, Mary. Mary and I have spent a great deal of time together this summer, but now that Ann is back in town, my visits will become less frequent again. Naturally as soon as Mary saw me today, she began laughing and we started talking about her wedding again. In a way, I am sorry that I will not be able to see how this story plays out but I am so happy she had these few days of side splitting laughter and in a way, that we had the time to create a story together. One she may or may not remember, but one in which I will.