Tuesday, August 9, 2011

Tuesday, August 9, 2011 -- Mattie died 100 weeks ago today.

Tonight's picture was taken in August of 2007. That summer I had gone to a conference in New Orleans and brought back a Mardi Gras mask and fan for Mattie. Mattie did not waste any time with this gift. He immediately put on the mask and wore it around the house. I thought he looked adorable in it and I am so glad I captured that moment. In fact, I captured many photo moments with Mattie. Naturally the explanation could be that he was my first and only child, but regardless, to me these photos are priceless. They hold a visual of our memories and they remind me of our times together. Times that were too short and fleeting.

Quote of the day: Please be patient with me; I need to grieve in my own way and in my own time.
Please don't take away my grief or try to fix my pain. The best thing you can do is listen to me and let me cry on your shoulder. Don't be afraid to cry with me. Your tears will tell me how much you care. Please forgive me if I seem insensitive to your problems. I feel depleted and drained, like an empty vessel, with nothing left to give. Please let me express my feelings and talk about my memories. Feel free to share your own stories of my loved one with me. I need to hear them. ~ Margaret Brownley

The Sapphire Princess docked at Ketchikan, Alaska this morning at 6:30am. As we were coming into port, Peter snapped some wonderful pictures of our journey.

We were on shore by 7:15am and began our tour of the city, attended an amazing lumberjack show, and toured Totem Bight Park. Ketchikan received its name from the Tlingit people, who originally settled this area as a summer fishing camp. The Tlingit name for Ketchikan Creek was recorded in 1881. One translation of the word extends into “spread wings of a prostrate eagle” because the course of the creek when viewed from above resembled the outspread wings of an eagle. Another version says the real name was Katskan or land belonging to Kats, an early Tlingit chief.

By the late 19th century, the discovery of gold and copper created a need for a mining supply center. Gold was discovered in the nearby hills and copper was discovered a short time later. Ketchikan quickly became the supply center for all the mines in the surrounding area. Ketchikan’s economy is dependent on tourism, commercial fishing activity and marine and retail services. Today it is a popular tourist destination. It is known as “The First City” because it is the first stop for ships heading north along the famed inside passage.

It was a glorious weather day in Ketchikan, the SUN was out and by midday it was in the high 60s. Our tour guide told us that seeing the SUN is VERY rare, even in the summer. Make a note that Ketchikan gets an average of about 14 FEET a year of rain! OH MY GOD! I need the sun, however I learned that people in Ketchikan need the rain. They love the rain, and we were told people get edgy when it doesn’t rain in a few days. Want to know why? Because Ketchikan has no municipal water supply and the only source of water is RAIN. Every house has a cistern to catch rain. To me this gives rain a whole new meaning. Rain is a necessity for life here. From my East coast perspective, I would say living in Ketchikan is downright challenging at best. It may be tolerable May through September, but after that point, the amount of sunlight decreases each day and the weather becomes cold. Ketchikan’s number one industry is tourism, with 36 cruise ships visiting EACH DAY during the summer! During the winter months the whole area goes into hibernation. Ketchikan is an island and the only way onto it is by ship or plane. Our tour guide told us that Alaska Airlines is the ONLY airline that flies into Ketchikan and the cost of an hour and a half flight from Ketchikan to Seattle is over $600. Being an island, the cost of living for residents is very high. Our tour guide bought 3 bundles of asparagus in the grocery store last week and she spent $23 on that alone and a package of ground beef was over $9. In a way it leaves you speechless! Keep in mind that our tour guide is a special education teacher during the year and in the summer months she is a tour guide. She says she can’t live in Ketchikan on her $36,000 a year school job.

The first stop on our tour today was to a lumberjack show. Peter was familiar with this sport, since he has seen these lumberjack athletes perform on ESPN. Honestly I did not know what to expect, but after watching this entertaining and yet amazing show for an hour, I can clearly see the art and skill needed to be a lumberjack. It doesn’t necessarily involve just sheer strength and bulk, it requires ability and agility. The audience at the show was divided into two halves. One half cheered for the American “Spruce Pine Mill” lumberjacks and the other half cheered for the Canadian “Dawson Creek” lumberjacks. These two teams competed with each other doing various lumberjack stunts. The site upon which the show took place was the old Spruce Pine Mill of Ketchikan and the only other large pine mill nearby was in Canada, The Dawson Creek Mill. So history provides some explanation for the names of the competing lumberjack teams.

Our “Dawson Creek” team member, Bryce, throwing an axe at a target! Bryce was an amazing lumberjack and apparently he has achieved an “ironjack” status, a status that only 19 other people have obtained in the world!

Bryce won the pole climbing competition today. He climbed up 55 feet in the air within 30-40 seconds!

Our other team member, Michael, was also amazing. Very agile and light on his feet. During the log rolling competition it almost seemed like he was dancing rather than just picking up his feet.

At the end of the performance, Peter took my picture with the two competing teams.

The next stop on our tour was to Totem Bight Park. At this park, we learned about the rich Native American history on the Island of Ketchikan. In fact, during two weeks of every school year, local Native Americans come into the classrooms and teach curriculum. The Native American history, traditions, and culture are imperative to all that live in Ketchikan, and Native American children and non-Native American children are integrated in the same schools. In addition, in middle school, every Ketchikan child is sent on a three day “survival camp.” Basically that entails a test of survival. Middle school children are given only a sleeping bag and NO other provisions. They must use the skills taught to them by Native Americans in order to live for three days without food, water, or shelter. As I was listening to this, the scary notion crossed my mind that I would never have graduated from middle school if I grew up in Ketchikan.

At this park we learned about Native American Clan Houses. Within each house lived an extended family of about 40 or more people. All these people were related to each other. However, I must emphasize that in this one large roomed house there was NO privacy. There were no closets, instead of walk in closets, they used walk on closets (closets which were found under the floor boards). In each clan house was also totem poles. I learned today that there are six different types of totem poles. Some are for memorial purposes or serve as headstones of a deceased and others can be used as supporting posts within a house for example. Nonetheless regardless of the purpose, the totem pole ALWAYS tells a story. Not in WORDS, but in pictures. Usually pictures of animals. In addition, totem poles always have a human face on them, to indicate the strongest or most dominate part of the structure. Like we read a book from left to right, a totem pole is read from bottom to top! It was fascinating to me how our tour guide who is a non-Native American knew many of the legends and cultural stories of her local tribes. In fact, she was able to translate many of the totem poles we saw and shared the legends and meanings with us. It was like listening to an Aesop fable, filled with meaning and a moral lesson!

Outside the clan house, you can see how colorful the exterior is. In fact, the exterior of a clan house could always be seen from the water. The pictures on the outside of the house helped to identify the tribe and family member of its owner. This particular clan house belonged to the Raven family, and those who passed the house by canoe could determine if they would be welcome at such a house or not.

Totem poles are made out of one large cedar tree trunk. Some are 50 feet tall! Each piece of the tree is intricately carved and only three colors are typically seen on a pole: blue, red, and black. In addition, to get a wooden copy of a totem pole here in Ketchikan, it costs anywhere between $1000 to $3000 per foot. So it is very expensive, and it takes years of training to be considered a master carver.

I wanted to share this picture of me with a totem pole to show you the amazing size difference.

I would like to end tonight’s posting with two messages. The first message is from Mattie’s oncologist and our friend, Kristen. Kristen writes to us each Tuesday in honor of Mattie’s passing. Kristen wrote, “Just wanted to send a note to you all the way to Alaska! Thinking of you this Tuesday and every day.”

The second message is from my friend and colleague, Nancy. Nancy wrote, “As I looked at the pictures of Seattle, I was reminded of my stay during the AMHCA conference and our visit to the Space Needle. Being so high up from the ground helped me to bridge ‘heaven from earth’ and appreciate all the wonders that life has to offer. I know that Mattie’s death has made recent sightings bittersweet, although, each sighting and reference keeps him in each of our thoughts. Although out of context, I wanted to remind you, as Karen did, that even though the staff has changed at the hospital, Mattie’s presence and experience is still there. You are living proof and I get that what you miss most was the connection that you felt with all of the staff and how they kept you afloat during those turbulent times. I guess this is what ‘time marches on’ is referring to. The picture of Charlotte and Mattie was precious and so telling about Charlotte. She is another wise and old soul! Maybe that is why she and Mattie were so close. To see a child their age be able to understand and be fully present with Mattie was exceptional. Peter’s picture of Mattie was so genuine. What each of us knows about grief is that one doesn’t need an actual picture of a loved one to carry with them after they have died, so this one of Mattie is reminiscent of his going along on the trip. In some way I see it as a way for Mattie to visualize all of the experiences for himself.”

Monday, August 8, 2011

Monday, August 8, 2011

Tonight's picture was taken in August of 2007 on Roosevelt Island. We typically walked the Island on the weekends regardless of the weather. As you can see Mattie was going through his Lightning McQueen stage and brought his umbrella along for this rainy walk. This beachy part of the Island was special to all of us, maybe because it is tucked away and secluded. Needless to say, I find it fascinating that this beach overlooks Georgetown University where Mattie received his treatment. It almost seems more than coincidental. Anycase, each spring I try to plant seeds near this location, because it was an area we visited often as a family.


Quote of the day: I tell you, hopeless grief is passionless. ~ Elizabeth Barrett Browning

Today was our only morning to sleep in on the cruise, because the rest of the days our mornings will start at about 6am! Not my time of day at all. However, I realize many of the natural sights we will be seeing on this trip are so special, that it really merits such an early rise.

As I am writing tonight’s blog, I am sitting inside but I am able to see the ocean and hear the waves going by. It feels about 50 degrees outside and with the wind whipping at your face, it feels even cooler. None the less, this day at sea has been filled with whale and dolphin sightings. It is hard to imagine that whales are right near the ship swimming in their natural surroundings.


We attended one of the ship’s Scholarship@Sea programs this morning entitled, The Glaciers – Grandeur of Mother Nature. The naturalist gave us an overview of glaciers and some of the incredible wildlife we will be seeing while in Alaska such as the bald eagle, goats, whales, moose, and sea lions. I learned that the whales around our ship are actually mothers traveling with their children. These children were most likely born in Hawaii or Mexico in February and are now migrating north. Since this part of Alaska is the third largest whale feeding area in the world, I suppose it isn’t surprising to see such a migration! It is hard to imagine that our 49th state, Alaska, is bigger than California, Texas, and New York, but has the population equivalent to Rhode Island.


After this lecture series, my mom and I went to a zumba class. My mom takes zumba, but I never have tried it. Unfortunately the class was packed with wall to wall people and the instructor couldn’t be seen by most of us because of where she positioned herself. In addition, unlike any other dance class I ever took, the instructor did not VERBALIZE any of the dance steps she was doing. So it literally was baptism by fire. Typically I am a patient person and can be flexible, but I admit I can get frustrated quickly when I don’t have my own personal space around me and I can’t see and learn the movements to participate. It is our vacation and I should take some things in my stride, but I find that I can’t. I find that little things set me off and I admire those people who can be fun and easy going and simply enjoy life. For me, I still feel as if I travel with an invisible shroud over my head and mind.


Despite the class not being great, I got enough of a feeling for zumba, to know that it is most likely worth exploring and taking a class. I can definitely see how this would be good exercise, but done in a fun way through music and movement.


Though we were at sea all day today, we covered many activities. We even went to a live Art Auction. This was my first auction aboard a ship, and for those of you who know me, you know I am dangerous at auctions. There is something about competing for an item against others that brings out a very aggressive side of me. Fortunately I had the mind set going into this that I wasn’t there to buy anything and just wanted to be there to see the process and watch the people. Neither disappointed!


Not having access to my Blackberry today was downright difficult for me. I use my Blackberry to stay connected to those I am close to and to also research and look things up on the Internet. I have so many questions from today’s glacier lecture, which if I had my Blackberry, I could turn to the internet for answers, but now I will have to wait until we are back in American waters tomorrow.


We arrive at Ketchikan, Alaska on Tuesday at 6am, and it is my understanding that we gain an hour tonight as we cross a time zone. So in essence Peter and I will be four hours behind East Coast Time! I am signing off for now but wanted to share parts of our day with you from being at sea.

Sunday, August 7, 2011

Sunday, August 7, 2011

Tonight's picture was taken in August of 2006. Naturally I could be talking about how Mattie loved his orange tunnel and thought it would be an interesting experiment to see if he could walk up and down the stairs in the tunnel, but that is not what I am focusing upon in this picture. What caught my eye were his shoes. Mattie's shoes, or the ones he would wear everyday, used to line our staircase. They always pointed in the same direction and were neatly arranged on the staircase, but they were to me the telltale sign that a little person lived in our home. At the time I never gave this much thought. The staircase was the most natural and quick place for him to store his shoes, but now that my stairs are NO longer lined with Mattie shoes, it reminds me in a very symbolic way that we are a home of two and NO longer three.

Quote of the day: There's no use in weeping, Though we are condemned to part: There's such a thing as keeping A remembrance in one's heart. ~ Charlotte Bronte

Today was a day of transitions. The major transition of course was checking out of the hotel and getting onto the cruise ship. This sounds easy in theory, but the logistics of moving thousands of people and their luggage in a coordinated fashion is no small task. So needless to say, as I am writing tonight’s blog I am simply exhausted.

Our day began early, and our luggage had to be tagged and ready by 8am. At around 12:30pm, we were standing in line to board the Sapphire Princess. A ship that holds over 2600 people! I tried to take a picture from the dock, but because the ship is SO huge, I literally could only get a portion of it.

In the midst of waiting to board the ship, I was emailing back and forth my lifetime friend, Karen. Karen was tracking our progress this morning, and at one point she told me she googled the ship and found information that other passengers shared. These former passengers reported that the beds were too hard on the ship and that they requested egg crates from their cabin steward. I thought that was absolutely fascinating, and of course made a mental note of this. Ironically I requested egg crates today, and would NEVER have thought to do this without Karen’s suggestion and information. The power of the internet and email! As soon as we checked into our ship cabin, I noticed Peter took out a picture. As I got closer, I could see it was a picture of Mattie. Peter travels with this picture everywhere, and now I can say that Mattie is also abroad the Sapphire Princess.

This afternoon, we went to a lecture entitled, ‘Trail to the Treasure’ The Story of the Klondike Gold Rush. This lecture was hosted by a Seattle Park ranger. The ranger discussed Klondike, an area in Alaska along a river known for its abundance of gold. She explained to us how Seattle capitalized on the gold sensation and catered to stampeders who needed provisions and proper shoe attire to manage their incredibly grueling journey. Mind you the shoe company who catered to the stampeders was owned by John Nordstrom. Or in other words the founder of the famous department store, Nordstrom’s. Unfortunately out of the 70,000 stampeders who left from Seattle to find gold, only about 300 actually found it and accumulated wealth.

As we set sail along the inside passage tonight, the same journey that the gold stampeders took in the 1890s, I can’t help but reflect on the history within this area. We went on top of one of the ship’s decks and watched the sail away at 4pm. The weather in Seattle has been absolutely incredible, sunny and in the 70s. It made for a very smooth and beautiful sail away.

We are at sea for the entire day tomorrow and as such, I will be without cell phone coverage. That may not sound like a BIG deal to many of you. But my blackberry is like my security blanket. This habit developed during Mattie’s battle with cancer and it is one thing I still cannot function or live without each minute of the day. So Monday will be a very interesting day at sea.

Saturday, August 6, 2011

Saturday, August 6, 2011

Tonight's picture was taken in August of 2006. It almost seems like another lifetime ago when our home was filled with toy cars, trucks, trains, tinker toys, and Legos. Back then our living room and dining room always had a Mattie building or construction project as its focal point. Now all these scenes are just memories, along with the sounds and character of Mattie.

Quote of the day: The death of a dear friend, wife, brother, lover, which seemed nothing but privation, somewhat later assumes the aspect of a guide or genius; for it commonly operates revolutions in our way of life, terminates an epoch of infancy or of youth which was waiting to be closed, breaks up a wonted occupation, or a household, or style of living, and allows the formation of new ones more friendly to the growth of character. ~ Ralph Waldo Emerson

Yesterday was a grey and cool day in Seattle, but today, was the perfect weather day. We saw Seattle with beautiful sunshine and 70 degree weather. It is a glorious city to see when the sun is out. As we opened our hotel curtains this morning, Peter introduced me to a sight I may have overlooked. On the rooftop below us, was a mother seagull and two of her baby seagulls in tow. The babies are unable to fly yet, but their mom does fly away throughout the day, but periodically comes back to check on her young. I have watched her at different time points today, and I couldn’t help but take a picture of the babies. A sight Mattie would have appreciated and most definitely commented upon.

We began our adventure by boarding Seattle’s Monorail. There was quite a line to get aboard this elevated train, but patience and persistence paid off. The Monorail took us directly from our hotel to the famous Space Needle.

In 1961, construction for the Space Needle broke ground. Once it was completed in 1962 (for the World’s Fair, with a science-based futuristic theme), it was the tallest building West of the Mississippi at a whopping 605 feet tall. This retro-meets-futuristic tower instantly became an icon of Seattle! The other popular attraction created for the World’s Fair was the Monorail, which zips people between downtown and the Space Needle.

We waited over a half an hour in line to get aboard one of the three elevators that take you up to the observation deck of the Space Needle. The waiting time wasn’t that bad in all reality and directly in front of us was a young couple from Sweden with their 15 month old daughter. The 15 month old was very entertaining and delightful, though I must admit it was a hard sight to watch. When I think that Mattie too looked healthy and happy at 15 months, and then of course later developed cancer and died, it is a sobering reality. Why certain children are chosen to get cancer is a fact I don’t quite understand and why some parents are lucky enough to keep their children and others aren’t is beyond me.

Once we were atop of the Space Needle, 520 feet above ground, we saw amazing sights of Seattle, from the downtown skyline to Union Lake, and we even got to see The Blue Angels perform their air show in the distance!

In our one full day to explore Seattle, we REALLY got around. This afternoon we headed to Pike Place Market, which is a 104 year old farmers market of grand proportion! The market was started to cut out the middleman between farmers and consumers and today, it remains a shining example of the true “producers’ market” where you can find anything from fresh strawberries to handmade local crafts. While at the market we saw the famous fish throwers, who literally throw large pieces of fresh fish over the heads of observers. This is basically done for entertainment and as a way of moving a piece of ordered fish from ice to its wrapping and packing station to be transported home with a buyer.

A block away from Pike Market is the flagship Starbuck’s store. It was a charming store with a lot of character and one observation I have regarding Seattle is there is literally one on every street corner. Not unlike Dunkin Donuts in Boston! I have to imagine in grey and rainy months, this shot of caffeine is not only desired but VERY needed.

Later this afternoon, we continued exploring the city and visited the Seattle Glassblowing Studio . While there we had the opportunity to observe several skilled artisans in action and also we saw several of their finished products. I particularly loved the flowers in the front of the studio designed completely of glass.

We have had many wonderful meals so far here and fresh fish is in abundance! It is wonderful to be back in a city surrounded by water. In Washington, DC, I sometimes feel land locked, despite having the Potomac River nearby. Tomorrow our cruise to Alaska begins and we will be saying goodbye to Seattle. Time has a way of flying by and sometimes I wish we were able to slow it down especially when on vacation.

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.