Saturday, February 22, 2014

Saturday, February 22, 2014

Tonight's picture was taken in February of 2009. Do you know what you are seeing? You could take a guess!!!! This was actually a physical therapy session taking place in the hallway of the pediatric units. As you can see Mattie was leading the way followed by Jenny (his art therapist), Denise (his social worker), Jessie (his art therapist), and a physical therapy intern pulling up the rear. The hand on the left holding Mattie's IV belonged to Anna, Mattie's physical therapist. All of these women are extraordinary and yet three of them who are no longer at Georgetown: Jenny, Jessie, and Anna. I am not sure what we would have done without each of these women. It saddens me that once Jenny and Jessie left Georgetown, there has been NO in-patient art therapy program. Which means the children stuck on the pediatric floor do not have access to such creativity, support, and an outlet to express their thoughts and feelings. Jenny and Jessie found a way to work both in-patient and in the out-patient clinic, but not all professionals share their work ethic, commitment to children with cancer, and their flexibility to work in both settings. Clearly Mattie went to Georgetown for the medicine, but years later, what do we reflect upon? The psychosocial support and connections! Which maybe why Mattie Miracle's tagline is...... It's not just about the medicine!


Quote of the day: Love is always open arms. If you close your arms about love you will find that you are left holding only yourself. ~ Leo Buscaglia


Peter had me laughing today! I was talking about Foundation issues and things to do, and in essence expressing that I seem to be always working. Of course, Peter works a full time job and then helps to manage the Foundation. So he has two jobs in a way. So really I have nothing to complain about, but what made me laugh was the simple fact that he says he doesn't worry about the Foundation because he knows I run it. Meaning I have enough anxiety and worry for two people, so in that respect it takes some stress off of Peter. I am not doing his statement justice, but it had me laughing. There is a lot of truth in jest and if I am focused on something as Peter knows, I most likely do take the stress off of others because I try to absorb a great deal of it myself. 

This weekend Peter has put me on a moratorium from work. He says I look like I am fading and if I don't rest, I will get even sicker. So I am taking his advice. Though I made a list of Foundation to dos, I am not doing them until next week. 
We did go out to lunch today and at lunch I was crying about one thing or another. For the most part, I am not a crier. When I cry it is usually because I have reached a maximum level of something! In this particular case, I think it is simply fatigue from not feeling well for so long, on top of a headache. A headache which probably would send the average person to bed. 

I learned today that it is the birthday of one of my friend's in cancer. This is his first birthday without his son. Though we didn't discuss this prior to today, I had a feeling already what this day would look like and feel like for my friend. Sometimes with grief you just have NO idea what a particular day, occasion, or event will feel like until it happens. Yet once it happens, in a way it clouds all subsequent events. It is hard to break such a pattern when it happens. I can only speak for myself, but because Mattie was diagnosed two days before my own birthday, I have a visceral reaction to my birthday now. I basically don't want to celebrate it and I can even make it difficult for my friends on that day. I am not sure what would help me get over that hump. Perhaps what bereaved parents are looking for are people who almost force us out of our comfort zone on that day, not because we are celebrating ourselves, but because we mean something to someone else, so much so, that we are worth celebrating. As if we need permission to experience a birthday. I am sure that sounds unusual, but this is an honest account of the feelings that swirl around in a parent's head. In any case, I think of my friend as he acknowledges this bittersweet day without his son. The unfortunate part is this is just the first of many other birthdays to come and finding a way to manage this from year to year presents its own kind of challenge. These are feelings and challenges that those of us in the bereaved parent club relate to all too well and thankfully we have each other to chat with, otherwise, it would be easy to think something is very wrong with us!

Friday, February 21, 2014

Friday, February 21, 2014

Tonight's picture was taken in February of 2009. The person in the yellow gown, pink bucket on her head, and mask is Linda. Linda was Mattie child life specialist. What you see here was a scene right out of our physical therapy session. Mattie's therapy took place within the hallways of the hospital on a good day. On a bad day, we were confined to Mattie's PICU room. Bending down next to Mattie was Anna. Anna was Mattie's physical therapist and another talented and brilliant lady. Both Linda and Anna knew that therapy had to be engaging and active in order to get Mattie to buy into it. So that day Linda dressed up in a gown because the goal was for Mattie to use his arms to squeeze water out of a water gun and douse Linda! Naturally a water gun may have been a fun tool per se, but it had much more meaning if Mattie could actually aim the water at something or someone. Linda was the brave soul that day who stepped up to the process. Needless to say, we were like the fifth floor's entertainment when Mattie was hospitalized.


Quote of the day: Two things here on earth are essential: health and a friend. They are the things most to be prayed for. ~ St. Augustine


Tonight's posting will be short. I am still not feeling well and running a fever yet again. I had a very busy day of meetings at Georgetown Hospital. Both were very helpful and meaningful meetings, so I am glad I was able to attend them. Yet the stress of managing the think tank while recovering from the flu and then coming back home to work on several major issues has been beyond taxing for me. There is something to be said about St. Augustine's quote and I very much appreciate my friends who walked today's journey with me. Their on line support before, during, and after the meetings will not be forgotten.  

Thursday, February 20, 2014

Thursday, February 20, 2014

Tonight's picture was taken in February of 2009. This was quintessential Mattie! Mattie was in his PICU room building with popsicle sticks and a glue gun. That was really all Mattie needed was building material and markers and his imagination could do the rest. Of course in between building I was tempting him to eat goldfish crackers. But cancer and eating did not go hand in hand for Mattie. Mattie was long and thin to begin with but on chemotherapy, Mattie was almost skeletal like. However, once Mattie developed Osteosarcoma, I began to notice that many of the children who shared this disease with him had a similar frame.... all tall, lanky, and lean. 


Quote of the day: We conquer by continuing. ~ George Matheson


It was my first full day back in DC and what a day it was! Though I had many chores to do like laundry and grocery shopping, I also had many Foundation items on my plate. However, despite how I planned for the day to go, it didn't exactly go that way. Several things came to my attention, which I can't quite discuss in such a public format. Needless to say they ranged from upsetting to perplexing. 

When Mattie was diagnosed with cancer, our world stood still. It practically stopped in many ways. Life as we knew it ceased to exist and the ironic part is, it has never picked back up from where we left off. It is permanently altered. However, in the process of becoming altered we met many wonderful nurses, doctors, and psychosocial support staff along the way. As Peter and I always said, these individuals at Georgetown Hospital became like our family. The beauty of family is they help us keep memories alive, and certainly when a child dies, we cling to these memories and crave others to help us remember. Yet what happens when one by one each person we were close to at Georgetown leaves? Our family gets smaller, so small that it too seems non-existent. As each person we were close to leaves Georgetown, they take a part of Mattie's memory away. It will no longer be housed at the hospital. What has made Georgetown special to us was the people, the people who knew Mattie. Yet as time moves on, people relocate, change jobs, or move on for other reasons. That is the natural progression in life, but it is unnatural for us. But besides being unnatural, it is upsetting because the fear is Mattie will be forgotten and his memory within the hospital will fade. Why is that a big deal? Well it is a big deal because in my mind the Hospital was the one place on this earth that knew our son quite well and experienced him 24 hours a day, 7 days a week. We clung to that institutional memory and it is hard to grasp that this memory is almost all gone now. Gone just like Mattie.   

Mattie may have been treated at Georgetown, but I feel no ties to the physical structure itself. Other than parts of the Hospital bring back bad memories and they remind me of what is missing from my life. As each of our hospital family members leave, it is as if we are mourning another loss. I am sure that may sound odd or intriguing, but nonetheless it is our reality. Having a child diagnosed with cancer sets off a cascade of losses, and certainly losing a child to cancer is like a guaranteed lifetime of loss. So today I am saddened that I have to say goodbye to another important member of our hospital family. One I deemed crucial. But this loss sets off a chain reaction, regarding the Foundation's activities and what we want to fund.

I would have to say that running Mattie's Foundation produces great highs and lows. There are really no in between moods. Which can be problematic because what makes this work very challenging is the emotionally taxing nature of the work. Today was one of those low and emotionally challenging days. A day which is hard to spin out of really, because when you are low it clouds everything else you see and how you see it. I shared today's low with only a couple of people, and I have very much appreciated their feedback and support today. Like anyone who is upset about something, I am not looking for a solution, just looking to be heard and to know I'm understood. 

Wednesday, February 19, 2014

Wednesday, February 19, 2014

Tonight's picture was taken in February of 2009. Mattie was home between treatments and he loved to play on the floor. On the floor one couldn't tell that he had any sort of disability. This photo captured Mattie building a volcano from a kit. Mattie loved all sorts of hands on stuff like this, especially when it also produced a mess. Mattie was intrigued at watching the red lava come out of his creation and this was one of several volcanoes Mattie built while battling cancer. In some ways, the volcano was symbolic of his own battle, and it did not surprise me that one of the stories Mattie created in the Hospital was entitled, "Mattie battles the Volcano." He even illustrated his story which literally showed Mattie trying to battle and hold back an erupting volcano.  


Quote of the day: We must believe that we are gifted for something, and that this thing, at whatever cost, must be attained. ~ Marie Curie

Peter and I are safely back in DC this evening. Fortunately DC surprised us with sun and 60 degree temperatures for our arrival. Yet despite the warmth, we could see mounds of snow everywhere. In comparison to that, this is my feathered friend who I spent every breakfast with at our hotel. This Laughing Gull was a pistol! He was very territorial and claimed this particular post each day. If other birds approached him, you would hear very loud laughing (which is what the squawking sounded like) and then he would chase these other birds away from his spot. This seagull was no dope! As soon as breakfast tables were cleared of people, this fellow would swoop down and claim uneaten food. He grabbed toast, croissants, and even SAUSAGE! I will miss hearing my friend tomorrow morning!

This is what our hotel restaurant patio looked like. For a conference themed hotel, it was actually quite lovely and had a resort feel to it. I would have to say that breakfast was my favorite part of the day because we got to sit outside and view the water, boats, and people!

To help you put this all in perspective, this is the back end of our hotel, and the umbrellas sit on the deck of the restaurant. 

Right next to the restaurant is a river walk. This walk goes on for miles. Today after breakfast we strolled along it and as you can see the sky was a beautiful blue and the weather was simply perfect. In all reality it was painful to leave Florida today. I don't know how one part of the Country can be so beautiful and another so grey. There is something to be said to being near water, it is simply therapeutic. 

Thankfully the hotel's check out time was noon. This gave us the opportunity not to be rushed this morning. Before leaving our room, I took some last minute photos from our balcony to remember our view. I just loved watching the boats and looking at the water. 

Though we stayed in Tampa, in the distance we could see St. Petersburg. This is another view from our room's balcony. I am already missing the view!

When we checked out of the hotel, our goal was to take a taxi to the airport. However, the bellman presented a different option for us. He literally packed us up in a limousine and told us the charge would be the same as a taxi. What a special way to get to the airport and I loved our driver. Our driver was from Jamaica and we had a fantastic time talking to him about his business (he is very entrepreneurial and clearly a hard worker) and politics.

After we got through airport security, Peter and I walked around the Tampa International Airport. We passed a store called Mind Works. This would have been a store that would have captivated Mattie. The window alone was a Mattie window filled with Legos. Again another example of us looking from the outside in now, rather than the inside out. 



While waiting at the airport gate today, a man with his three sons sat down next to me. I was trying to mind my own business, but with three in tow and a dysfunctional father, it was challenging not to get caught up in what I was hearing. These boys were young, made 5, 7 and 9 years of age. I am not sure what I found more disturbing, the fact that the father allowed these children to run around the airport OUT OF HIS SIGHT, or the fact that he was yelling at the 9 year old about the fact that he was expressing his feelings. It seems to me a young child shouldn't be out of the visual sight of an adult anywhere, much less an airport. But I was truly troubled by the fact that the father was yelling at his son. His son has ear issues on take off and landing when on an plane. Instead of listening to his son, comforting him, and normalizing that fear, he literally said, "you are 10 (mind you he admits to only being 9!) and you have to get in control of your emotions. I'm tired of these outbursts and we have discussed the plane before. So stop thinking about it and just play with your computer." A real ROLE model there!!! I turned to Peter and said, "this is why my profession will never go out of business." If I had no experience at being a mom, I would chalk up my assessment of today's interchange as perhaps me being judgmental. But having raised Mattie to age 7, and through cancer, I knew what I was seeing was not only simply wrong, but it was upsetting. I was robbed of the chance to parent, while this man has three healthy children, and is doing what I would deem a bad job at it. Parenting requires patience, understanding, setting limits, and empowering your child to have his or her own thoughts and feelings. 

Another highlight of my day was receiving this photo! I have a new friend. Her name is Linda. I was introduced to Linda through our mutual friend Christine. Linda is now a Mattie Miracle supporter and the title of her emailed photo was "Orange Power!" I simply love her nail color and Mattie would have been thrilled to see Linda's spirit. As I told Linda her photo made my day! What the orange nail polish signifies to me is that Mattie's story has touched another individual's life and Linda is now passing along the story. Music to this mom's ears!

Tuesday, February 18, 2014

Tuesday, February 18, 2014 -- Mattie died 232 weeks ago today.

Tonight's picture was taken in February of 2009. Mattie was home between treatments and though it was challenging, we tried to encourage him to use his walker at home. In so many ways Mattie was thoroughly incredible. Despite the pain he lived with, pain which would have sent most of us to bed or cowering in a corner, Mattie found a way to be up and about and to engage with the world. For the most part we carried Mattie around our home, from one place to another. Which was a feat because he was fragile, had constant pain, and ultimately really wanted to be independent. But when he did have the energy, he gave it his best effort to try to relearn to walk. I snapped this photo one day which I think illustrates his spirit.  

Quote of the day: If the wind will not serve, take to the oars. ~ Latin Proverb

Last evening while Peter was outside on the balcony and I was writing the blog, Peter had a dolphin sighting. Literally right by the dock of our hotel. Peter instantly called me and I jumped up and got to see this beautiful sight! Talk about being in the right place at the right time!

Today was another glorious weather day! In the upper 70s and with NO wind. It was delightful. This was our sight over breakfast. We sat on the deck of our hotel's restaurant and I admired the beautiful flower on their traveler's palm. The flower itself looks like a bird of paradise, in other words it looks like the profile of a bird!

Literally right next to me was our breakfast table. This is breakfast by the dock! I will have to remember this beautiful sight as we head back to the grayness of DC tomorrow. It is hard to imagine that some people live in sun year round and others of us suffer in the cold and gray depressing winter.

Peter and I drove for an hour today to Sarasota. We visited Sarasota many years ago, during our pre-Mattie days. Because we are determined to spend as much time outside as possible in this beautiful weather, we decided to visit the Marie Selby Botanical Gardens. A first for us! 

Marie Selby Botanical Gardens was officially opened to the public on July 7, 1975. Marie Selby's final wish was fulfilled, and the Selby legacy was in full bloom. Since the Gardens opened, the property has expanded from seven acres to nearly 13 acres. The elegant Mansion in this photo was purchased in 1973 and now houses the Gardens' Museum. The Gardens maintains a plant collection numbering more than 20,000 accessioned plants. Eight greenhouses include the stunning Conservatory where unusual flora can be seen year round. The Botany Department provides headquarters for the Bromeliad, Gesneriad, and Orchid Research Centers, and the Selby Gardens' Herbarium and Molecular Laboratory. The Marie Selby Botanical Gardens, a respected center for research and education, as well as a famous showplace, delights more than 180,000 visitors 
each year.

As we entered the gardens we were greeted by this plant called the Flaming Vine. It lived up to its name! To me it screamed out..... MATTIE MIRACLE!

This is a photo of me inside the Gardens' huge hot house. This Garden contains one of the largest orchid collections in the world. Specifically the Garden houses: 5,500 orchids, 3,500 bromeliads and 1,600 other tropical plants. I learned today what an epiphyte was!!!

Epiphytes are plants that live on other plants but are traditionally classified as non-parasitic. The most common epiphyte seen in Florida is Spanish Moss—not a true moss, but a member of the bromeliad family. Often called “air plants,” epiphytes attach to their host plants for support and as a means to reach more sunlight. Epiphytes, most abundant and diverse in tropical rain forests and cloud forests, can also be found in forests around the world. Epiphytes account for 10% of all plant species and are found in many plant groups such as the aroids, begonias, bromeliads, heaths, nightshades, orchids, ferns, and true mosses. Since they have no roots in the ground, epiphytes use special adaptations to obtain and store water and nutrients. 

Though Peter captured MANY photos within the hot house, I will share eight extraordinary examples of epiphytes with you! Check out this orchid.

This may not look like an orchid, but it is. Keep in mind these orchids are NOT growing in dirt. They are literally hanging from walls, off of other plants, and thriving.

Another stunning orchid!

I have never seen such a patterned orchid before.

This is your more common looking orchid, and yet there is nothing common about it. This hot house stopped people in their tracks. People were simply enamored by what they were seeing. 

Here you can see this orchid hanging in mid-air and also Spanish Moss growing into it.

To me, orchids have faces! What do you think?

This plant, also an epiphyte gets me every time. It needs a protein source to grow, and literally it achieves this source by capturing bugs, rats, and birds (YES!!!) inside its pitcher. As soon as something lands inside the plant, enzymes kill it and the plant begins devouring its prey for nutrients.

How do you like this fern? One of the largest I have seen! I am standing under it to give it scale. 

I love bougainvillea, but I have never seen a bonsai version. The brilliant color is captivating regardless of its size.

In addition to the hot house, there were expansive gardens all about. Gardens of cactus, a fragrant garden, mangroves, and a garden filled with flowering plants and trees. Not to mention a banyan tree in the middle of the property which is hundreds of years old. 

This particular garden caught our attention. Maybe it was the beautiful and melodious fountain within it! Nonetheless, if Mattie were with us, he would have been instantly attracted to this rain forest.

Within the rain forest garden, was a pond filled with koi. A sight which would have definitely intrigued Mattie. In fact, if Mattie were in tow, we would have bought koi food to feed the fish. Peter and I rarely go on vacations alone, but when we do, we reflect on our side kick who is missing. With Mattie, we experienced and saw things in a different way.

The Gardens have thought of everything. There is an extensive children's play area, filled with trees and things to climb on. I had Peter snap a photo of this so you could see what I meant. For us now we only look things like this from the outside in, rather than if Mattie were with us.... inside out. 

This is a red silk floss tree. Not a leaf on it yet the flowers are enormous. Like the size of a big rose. The birds LOVE this tree. There is practically a bird for every blossom. 

This is a Gumbo Limbo tree, which is considered in jest to be the unofficial tree of Florida. Why? Because the brownish red bark tends to peel, not unlike a tourist who gets a sunburn!!!

Within the fragrant garden was one of my favorite bushes. It was named.... the Vick's vapor rub tree! A tree I absolutely love, especially when sick! 

The Gardens are filled with lizards, of all shapes and sizes. Some of them walk right out in front of you, it is amazing there aren't smooshed lizards everywhere.

This glorious flower belongs to a banana
tree. If you look closely you will see a bunch of bananas growing on top of the flower.

No visit would be complete without a monarch butterfly sighting. Butterflies were flying all around us, however, only at the end of our visit did one actually stop moving and pose for a photo. A Mattie sign indeed.

After our tour of the Gardens, we drove into Lido Key, which is part of Sarasota. This key is filled with shops, cafes, gardens, and people. We had a lovely lunch at Cafe Europa, sat outside, and watched the people go by. 

It is hard to believe that our week in Florida has gone by already. Since most of it was spent working, this isn't surprising. We need many more days here to recuperate, but I am happy we had these three. I am still not 100% from the flu. I am not as symptomatic, but definitely not well either. The doctor told me that I could feel debilitated for a month and so far her trajectory is right on target.

Monday, February 17, 2014

Monday, February 17, 2014

Tonight's picture was taken in February of 2009 in the Hospital's clinic. As you can see Mattie was working with a pottery wheel and trying to make a clay creation. After Mattie's limb salvaging surgeries, he was unable to lift his arms very high. Certainly he couldn't lift his arms over his head. The pottery wheel and working with clay was very therapeutic for Mattie. He did not realize he was getting exercise this way, but he indeed was using his arms and hands to create. Sitting with Mattie were Jenny (Mattie's art therapist) and Whitney (one of Mattie's child life interns). Mattie always did better when he had those he trusted by his side encouraging him to play, create, and to be a child. Being a child in a very abnormal environment was a tall order, but it was thanks to people like Jenny and Whitney that this was even possible. 

Quote of the day: The past is a ghost, the future a dream. All we ever have is now. ~ Bill Cosby

Today we ventured to Weedon Island Preserve in St. Petersburg. The Preserve got its name after Dr. Leslie Washington Weedon. Weedon was the only physician in Tampa at the turn of the century. He was best known for his study of yellow fever. Weedon lived on the island with his wife and the Island had quite a history because at one time it housed an airport and even a movie studio, Sun Haven Studios which produced three movies. This photo captures the remains of the airport terminal building. In fact, a park ranger told us that the two stone pillars you see in the middle, were literally the arch through which passengers entered the terminal building. 

The preserve is an expansive 3,190-acre natural area located on Tampa Bay. We climbed up to an observation tower and literally we could see mangroves for as far as the eye could see. 

Here is a close up of one of the boardwalks we walked on today. The boardwalk took us in and among the mangroves for miles. About four to be exact!

This is what the root system within the mangroves looks like. Mangroves do not populate by seed, but instead through off shoots that grow from one tree to another. These root networks act like shock absorbers, cushioning coastal land from wind and wave energy. In addition, roots trap soil, reducing coastal erosion. Mangroves provide an important line of defense against hurricanes and other storms. This isn't surprising because to me this looks like a nest of wires that are intertwined and wrapped around each other. It would be hard to sever or destroy such a system of branches.

Along our journey we entered a peaceful bird sanctuary. It was so quiet there you could hear a pin drop. Water birds of all kinds populated this area, feeding on fish, shrimp, and other things in the water.  

Within the bird sanctuary were many great blue herons.

In addition to the great blues, there were Ibis (which is also nicknamed the Florida pigeon, because they are SO common), and a new one for me today was the Roseate Spoonbill. What a charmer! This bird has beautiful rose colored feathers and a bill that looks like a spoon, to scoop up fish!

There were many white herons to be seen as well. 

I am intrigued by all the Spanish Moss hanging off of many the trees. This is most definitely a different sight than what we see in the northeast or middle Atlantic region. 

While walking along one of the trails, we literally had an armadillo crossing! In fact, we saw three armadillos at the Preserve. I went from NEVER seeing an armadillo before, to now seeing four in two days. 

Is this not the perfect armadillo photo???

Check out this cutie sitting on a piece of wood! This lizard was so tiny, yet happy to bask in the sun. It was the perfect weather day in Tampa/St. Petersburg today, and I related to his need to capture the sun. Mattie would have absolutely LOVED the armadillo and lizard encounters!

After our visit to the Preserve, we went to downtown St. Petersburg and ate by the water. We walked the town, found a home made gelato store, and even snapped photos by the Vinoy. When Peter worked in St. Petersburg years ago, I visited him in March for a week and we stayed at the historic Vinoy. Seeing it over a decade later was still very special. The Vinoy is a historic Mediterranean Revival styled hotel in downtown St. Petersburg. On September 11, 1978, it was added to the U.S. National Register of Historic Places. The Vinoy was built in 1925 by Aymer Vinoy Laughner. Construction began on February 5 and took 10 months to complete. The hotel was a seasonal hotel open from around December to March. Rates were $20.00 a night, the highest in the area at that time. The hotel was a popular destination for celebrities ranging from Babe Ruth, Herbert Hoover, Calvin Coolidge and James Stewart. During World War II the hotel was taken over by the U.S. Army and used for a training school. The hotel was sold to Charles Alberding after the war for $700,000. The hotel continued to prosper for the next couple decades. In 1974 the Vinoy closed its doors and sold most of its contents. The hotel became a haven for vagrants until the early 1990s when it was bought by a partnership between Renaissance Hotels and Resorts and the Vinoy Development Corporation. A $93-million renovation was undertaken, and in two years the Vinoy reopened as an almost perfect replica of its former self.