Monday, April 6, 2015

Monday, April 6, 2015

Tonight's picture was taken in April of 2004. This was during Mattie's second birthday party and the theme was trains. Mattie had an early love and affection for trains. All kinds of trains. Of course as he got older, electric trains became his focus and interest. Yet he never outgrew the adorable Tank Engine Thomas and it seems to me Mattie always had a toy car or train in his hands at all times.  


Quote of the day: Everyone can master a grief but he that has it. ~  William Shakespeare

On our way to the Shell Museum today we passed an Ibis on the side of the road. Ibises are quite common in Florida. They are nicknamed the "Florida pigeon." But they are long legged wading birds, who dig for food in the mud with their down curved bills.  

This is the Bailey-Matthews Shell Museum. For many years, Sanibel shell enthusiasts dreamed of establishing a museum dedicated entirely to shells and mollusks and their importance to the environment. Sanibel Island, long considered one of the world's best shell-collecting areas, would be the appropriate location.
The actual building fascinated me because it looked like the shape of a seashell from the outside. It almost prepared you for what you were about to see inside.

In early 1989, pioneer island residents Francis, Samuel, and John Bailey promised to deed over to the Museum eight acres of land situated in the wetlands south of Sanibel-Captiva Road. At the same time, approvals for the use of the site were granted by the Army Corps of Engineers and the Florida Department of Environmental Protection. In 1990, the Bailey brothers materialized their generous gift of eight acres of land in memory of their parents, Frank P. Bailey and Annie Mead Matthews. In their honor, the museum is named The Bailey-Matthews Shell Museum.

In January 1990, the Museum opened its capital campaign office, and actor Raymond Burr served as campaign chairman. In fact, there is a memorial garden dedicated to Mr. Burr at the entrance to the Museum. If you are a Perry Mason fan, then this whole notion captured a visitor's attention!

The museum displayed this simplistic, yet helpful map of the Island. Peter and I are staying all the way on the right. Not on Sanibel itself, but that little piece of yellow land that is connected to the causeway directly above the word, "lighthouse park beach." Each time we want to enter into Sanibel, we need to come over the causeway which is a $6 toll. There are no resorts per se on the Island, only small inns, homes to rent, and smaller properties. Since we have never been to Sanibel before, we weren't going to chance it with properties we were unfamiliar with. So instead we are driving across the causeway, but for a small Island, they have a MAJOR traffic problem. In any case, we visited the circle on the map today, right by where it says "Sanibel Island."

The shells were beautifully displayed in the museum, and before we started touring around, we actually saw a 30 minute film about Mollusks. We learned more about mollusks and particularly about two families of mollusks, Bivalues and Cephalopods. 

What truly caught our attention was this fact! While walking on the beach the other day, we saw tons of this stuff but didn't know what it was. They are Whelk (a type of cephalopod) shell casings, in essence where whelk shells lay their eggs to form MORE shells. Apparently thousands of baby shells can be hatched from these casing!!!

These shells are deep water species that are found over a mile down in the Gulf of Mexico. They are rare and hardly ever seen. They were brought up by shrimp trawl nets and traps. 

In some cultures shells were used as currency! This form of money was called Cowries. Check out the specifics in 1850: 

1 chicken could be purchased for 50 cowries for example!

Think about how much all these Cowries could have been worth centuries ago!

A sailor's valentine is a form of shellcraft, a type of mostly antique souvenir, or sentimental gift made using large numbers of small seashells. These were originally made between 1830 and 1890, and they were designed to be brought home from a sailor's voyage at sea and given to the sailor's loved one or loved ones.[1] Sailor valentines are typically octagonal, glass fronted, hinged wooden boxes ranging from 8" to 15" in width, displaying intricate symmetrical designs composed entirely of small sea shells of various colors glued onto a backing. Patterns often feature a centerpiece such as a compass rose or a heart design, hence the name, and in some cases the small shells are used to spell out a sentimental message. Although the name seems to suggest that the sailors themselves made these objects, a large number of them originated in the island of Barbados, which was an important seaport during this period. Historians believe that the women on Barbados made the valentines using local shells, or in some cases using shells imported from Indonesia, and then the finished products were sold to the sailors.

The museum featured the beauty of shells from around the world, such as Italy and its use of cameo carvings into shells.

Shells in Architecture

Later in the afternoon we went to outdoor shops called Periwinkle Walk 

The flowers and trees at this outdoor complex were glorious and I wish all our shopping areas in DC looked like this!

In the center of the shopping area was this lovely Banyan tree!

Of course no day would be complete without a lizard sighting! A message from Mattie!

Sunday, April 5, 2015

Sunday, April 5, 2015

Tonight's picture was taken in April of 2003, during Mattie's first birthday party. That was quite the event. It was a party with just family but noise and groups of people were not Mattie's forte back then. It was all absolutely overwhelming for Mattie and he was crying and rather unhappy. Thankfully it was one of the better weather birthdays that he had and we were able to go outside, do activities and have cake. 



Quote of the day: Real grief is not healed by time ...  if time does anything, it deepens our grief. The longer we live, the more fully we become aware of who she was for us, and the more intimately we experience what her love meant for us. Real, deep love is, as you know, very unobtrusive, seemingly easy and obvious, and so present that we take it for granted. Therefore, it is only in retrospect -- or better, in memory -- that we fully realize its power and depth. Yes, indeed, love often makes itself visible in pain. ~ Henri Nouwen

Last night in honor of Mattie's 13th birthday, a glorious Mattie Moon was shining in the sky over Sanibel Island, FL. Peter captured this wonderful moon!

This is the causeway that we have to take from our hotel to drive into Sanibel Island. Our Hotel is literally right outside the Island. However, this is the ONLY way onto Sanibel Island and there is a $6 toll each time you enter. 

Clearly Sanibel and Captiva are a boaters paradise. While going over the causeway, you can see boats for as far as the eye can see! 

We decided to visit the Ding Darling National Wildlife Refuge today. The name alone to me is absolutely adorable. But yes indeed this refuge was named after its founder! 

Jay Norwood Darling (political cartoonist and founder of the National Wildlife Federation) was instrumental in the effort to block the sale of a parcel of environmentally valuable land to developers on Sanibel Island. At Darling's urging, President Harry S. Truman signed an Executive Order creating the Sanibel National Wildlife Refuge in 1945.

The refuge was renamed in 1967 in honor of the pioneer conservationist. The refuge consists of over 6,400 acres of mangrove forest, submerged seagrass beds, cordgrass marshes, and West Indian hardwood hammocks. Approximately 2,800 acres of the refuge are designated by Congress as a Federal Wilderness Area.

The refuge was created to safeguard and enhance the pristine wildlife habitat of Sanibel Island, to protect endangered and threatened species, and to provide feeding, nesting, and roosting areas for migratory birds. Today, the refuge provides important habitat to over 245 species of birds.

The Refuge is truly peaceful and filled with incredible wildlife! I am SO grateful to the ranger today who suggested that instead of walking 5 to 8 miles, to consider paying $5 and taking our car into the Refuge and then walking whatever parts we wanted to in between. That was outstanding advice because we could never have covered the distance we did by car! The heat, humidity, and intense sun would have killed us first. I will some of the highlights of what we saw today....................................................

We saw lots of Mangroves, which are referred to as walking trees. Because they literally look like they are sprouting little feet and taking off. 

Mangroves serve very important functions in the ecology of South Florida. Mangroves have a high ecological role as nursery grounds and as a physical habitat for a wide variety of vertebrates and invertebrates. They recycle nutrients and the nutrient mass balance of estuarine ecosystems. Mangrove leaves, wood, roots, and detrital material provide essential food chain resources, and provide habitat for many wildlife including mammals, birds, reptiles, amphibians, and arthropods. Mangroves have a special ecological function for endangered species, threatened species, and species of special concern. They also serve as storm buffers; their roots stabilize shorelines and fine substrates, reducing potential turbidity and enhancing water clarity. One of the greatest values of mangroves swamps in Florida is their aesthetic appeal.

Through the mangroves was this wonderful open area of water. If you stopped for a bit and watched closely, you would be entertained by flying fish! The theory is that the fish fly up and out of the water because they are trying to remove the sand and dirt that accumulates in their gills. Sand and dirt which is obtained from them swimming at bottom of the water way. As they jump out of the water, they are jumping sideways. Kind of like when we get water in our ears, we are shaking our heads to the side to remove the water. This is the fish equivalent. 

This Black Snake photo has a story to it! Naturally! While we were driving, Peter saw the snake dead on the road. So we pulled the car over and got out to check on the snake. Ironically we weren't the only ones doing this. Frankly I hate snakes, but Mattie LOVED them. So I went along with the process. Peter picked up the dead snake and moved him onto the sand. We snapped a photo of it because this would have been a sighting Mattie would have absolutely loved and if he were with me, would most likely have taken the dead snake home with us. 

We saw cormorants.

Peter spotted a Belted Kingfisher. Kingfishers spend much of their time perched alone along the edges of streams, lakes, and estuaries, searching for small fish. They also fly quickly up and down rivers and shorelines giving loud rattling calls. They hunt either by plunging directly from a perch, or by hovering over the water, bill downward, before diving after a fish they’ve spotted.

This flock of birds are all comprised of Willets. Piercing calls and distinctive wing markings make the otherwise subdued Willet one of the most conspicuous large shorebirds. In the breeding season, these birds are brownish in color, but in the colder months, they are nonbreeding and grey. As seen here! 

This was a first for us! We got to see a Reddish Egret. The ranger nicknamed him "George." Reddish Egrets are a medium to large heron who live in shallow salt water. They are very active foragers, often seen running, jumping, and spinning in pursuit of fish.

One of the largest North American birds, the American White Pelican is majestic in the air. The birds soar with incredible steadiness on broad, white-and-black wings. Their large heads and huge, heavy bills give them a prehistoric look. On the water they dip their pouched bills to scoop up fish, or tip-up like an oversized dabbling duck.

We walked the Shell Mound Trail, which was filled with mangroves. But the wonderful part about this trail, is we got to see Ospreys up close! Peter and I have only seen these birds of prey from a distance, so when we saw these large birds we had no idea what we were looking at until we looked them up!

Osprey -- Unique among North American raptors for its diet of live fish and ability to dive into water to catch them, Ospreys are common sights soaring over shorelines, patrolling waterways, and standing on their huge stick nests, white heads gleaming. These large, rangy hawks do well around humans and have rebounded in numbers following the ban on the pesticide DDT. Hunting Ospreys are a picture of concentration, diving with feet outstretched and yellow eyes sighting straight along their talons.

A close up of the Osprey

I end tonight's posting with a reflection from my mom about Mattie's 13th birthday (which she sent to me on April 4th):

It is Mattie's 13th Birthday and he should be here with us to celebrate the occasion. But he is not! That is the natural order of life. Grandchildren outlive their grandparents.  But when the natural order is disrupted,  then a philosophical  understanding of his life is the only way to make the pain bearable and less incomprehensible. My heart takes over, heavy though it may be and laden with pain,  commanding my mind to remember with gladness the seven wonderful years that Mattie gave us when he was alive. It is better to have had Mattie in our lives for seven years than to have never known the magic of that angelic child. Happy Birthday Mattie!   We love you!

You are remembered today and always!!

Saturday, April 4, 2015

Saturday, April 4, 2015 -- Mattie would have been 13 years old today!

Tonight's pictures are a compilation of birthday photos. One for each beautiful year Mattie was with us. It is hard to imagine that a child can be born healthy and be fine up until age 6. This is something I will always grapple with, but of course it makes no sense and I have stopped trying to look for answers to life's impossible and unfair questions. The photos you see are the following: 2002 (Mattie's birth photo at Virginia Hospital Center - which Peter took in the nursery, while I was still in the operating room), 2003 (Mattie's first birthday - the theme was Elmo!), 2004 (Mattie's second birthday - the theme was trains), 2005 (Mattie's third birthday - the theme was Blue's Clues), 2006 (Mattie's fourth birthday - the theme was dinosaurs), 2007 (Mattie's fifth birthday - the theme was Cars from the Disney movie), 2008 (Mattie's sixth birthday - the theme was Scooby Doo), and 2009 (Mattie's seventh birthday was in the hospital and in the photo Mattie was pictured next to his big buddy Brandon). 


Quote of the day: It will take mind and memory months and possibly years to gather together the details, and thus learn and know the whole extent of the loss. ~ Samuel Clemens (Mark Twain) after the death of his daughter Suzy

After a horrific night of sleep, Peter and I had a slow start to our day today. Peter and I both lead very stressful lives on a daily basis, of which we usually don't talk about it or share it with others. Because naturally we feel who is going to listen to us or understand at times. Yet factor in the stress and that today is Mattie's 13th birthday and it is a bad combination. This afternoon we ventured to the Island Cow for lunch. Any one who really knows me, knows I am obsessed with black and white cows! So this restaurant theme was right up my alley. The wait to get into the restaurant was 30 minutes. So we sat outside in this clever chairs. While waiting, a cow bell started ringing and out came servers with a big bowl of ice cream singing happy birthday to a girl named Charlotte. Apparently today was Charlotte's 16th birthday. Peter and I were speechless. We could neither sing, nor acknowledge what was going on. Honestly my natural reaction was to leave the restaurant. I was that overwhelmed or to have an anxiety attack. But I somehow did neither and then Peter broke the tension by.... "well this is depressing!" I couldn't have said it better.

It is depressing because there is no Mattie to sing happy birthday to, no cards to give, presents to open, and a life time of memories to make. It isn't about one day, it is about a whole bunch of days, and a birthday just further signals the loss. CONSTANTLY.

I would have to say that Sanibel Island and Captiva are in my opinion under developed, more natural, and they have a more eclectic feel to them. Certainly in comparison to the East coast for Florida, which I am more accustomed to. To give you a feeling for what I am talking about, this is a photo I took of the outside of the Island Cow restaurant. 
They decorated the awning using Red Solo cups, they have a cage of birds on the right, and of course sand and adorable cow signs everywhere. It is kitchy!

This is a typical road on Sanibel Island! It is in essence a barrier island and there is a lot of scrub brush and trees lining the roads. There is only a one lane road going in and out and you have to take a causeway to get over into the Island, and MIND YOU that cost is a $6 toll! What is deceptive about all of this though is there are a ton of residents on this Island. There are houses everywhere, some small and some estates! But they are tastefully constructed into the land, so you can't see them from the road. 

We then went to visit Gulf Side City Park Beach. Naturally this is the Gulf of Mexico and not the Atlantic. The water is very warm and super calm. But the beaches in Sanibel and Captiva are known world wide for their shelling. I can see why! The shells are everywhere. Walking is very painful in a way. I came prepared with a bag to collect some precious pieces. 

While walking, we came across a cormorant just sitting there. He wasn't moving at all. Clearly he is used to people and didn't mind being photographed. In fact, the first time I saw a cormorant was when I visited Tampa years ago. I associated the West Coast of Florida with these distinct birds. 

Can you tell where the water ends and the sky begins? 

One of my favorite sea birds, the plover!

In honor of Mattie, we constructed this sign made out of the bountiful shells at our disposal.... MJB 13th! Mattie loved the beach, playing in the sand, and collecting seas. This seemed like the most appropriate place to visit today and an activity he would have approved of!















I end tonight's posting with my "Dearest Mattie" letter that I wrote and had on display for Mattie's celebration of life event, after he died. It is a letter that expresses the time leading up to Mattie's birth, how we felt about his pending arrival into the world, and the meaning he gave to our life. The feelings remain, though Mattie is no longer with us, and I believe it is my role to keep these memories alive for myself and those around us. 


-----------------------------------------------------------
MY DEAREST MATTIE

My Dearest Mattie,

It is said that parents love their children right from the moment they are born. However, in your case, our love for you began as soon as we learned we were going to have a baby. In fact, right after seeing your sonogram picture, we felt like proud parents. We posted those pictures everywhere. We shared these pictures with practically anyone who would listen or showed interest, and each September when I taught prenatal development in my undergraduate human development class, out would come your sonogram pictures to illustrate my points. Even my students got a sneak peek at our baby, a baby who would have a profound and meaningful impact on not just his parents but also every community he touched. Daddy and I did not only love you, we FELL IN LOVE with you, and that love grew stronger with each day. Your energy, spirit, love for life, intellectual challenges, sense of humor, and loyalty to your friends and family were only some of the wonderful traits we always admired in you.

This video is a tribute to you and your wonderful, yet short life. It seems fitting as we celebrate you, and say good-bye to your physical presence that I share the story about how you entered the world. The story of your birth had to be one of your most favorite stories to hear, and I found during times when you were reflective, overly tired, or in need of hugs and tenderness, the request for this story arose. In fact, I remember on August 5th, the day we found out that your cancer metastasized everywhere, you and I were sitting in the hospital’s rose garden, and you requested the story. It was almost as if you knew this was going to be a bad day, so in essence we might as well brace ourselves, cuddle, and prepare for this together.

Here is the story I always shared with you. A story Daddy and I will never forget. On April 2, 2002, at 11pm, I decided to head to bed. I was anxiously awaiting your birth, and as your due date approached, I couldn’t help but wonder, when will “the baby” be coming? I was restless and uncomfortable, so while in bed, I began to watch television. I was having trouble concentrating on what I was hearing, mainly because you were kicking up a storm inside of me. At which point, the kicking became so intense, that I literally felt something pop. You clearly wanted OUT, and you were going to kick your way into the world on your terms. Naturally after feeling this pop, I looked down at my tummy, and when I jumped out of bed, I realized my water had broken. This only happens to 25% of moms, and in retrospect, I should have guessed that this was just the beginning of how different our lives were going to be together. I immediately called the doctor and told her what happened. She asked if I was in pain, which I wasn’t, and she instead told me to get a good night’s rest, because my baby was going to be born the following day. Well I can assure you after hearing this news, sleeping was the farthest thing from our minds.

So on April 3, 2002, Daddy and I headed to the hospital and we were admitted to the maternity unit at 8am. The labor process began, but it was a VERY slow process for me, and at times as you moved inside my tummy, Daddy could see your head pushing against my backbone. Needless to say Dr. Mike, the anesthesiologist, became my favorite doctor that day. The hours kept rolling by, and still there was NO sign of our baby! I was getting weaker, I developed an 102 fever, and by 11pm I really had no energy to give birth to you. In addition, to how I was feeling, your oxygen supply was getting cut off, and your chin was positioned in such a way that would make the birthing process almost impossible. So it was at that point that the doctor recommended an emergency c-section. Things began to happen very quickly around me. I was signing paperwork for surgery and Daddy was being transformed by putting on a bunny suit so he could enter the operating room.

I had never been in an operating room before in my life, but I really wasn’t concerned at that point about myself. I was solely focused upon you. I was wide-awake for the c-section, but unable to see the process, which as you know, was probably a good thing. Daddy on the other hand found the whole thing very exciting, and began to videotape and take pictures of the surgery. Literally a team of people surrounded me and I will never forget Dr. Mike, the anesthesiologist who sat by my side, and talked with me and did whatever he could to keep me pain free.

When you have a c-section, your arms are strapped to the operating table, so I couldn’t move, and directly over my head was what appeared to be a rope with a clamp that was holding open my abdominal cavity. Normally by this point I would have passed out, but when it came to you, I developed strength I never knew I had. As the doctor began cutting, and finally got to you, the first thing she said was, “what is this?” That is NOT what you typically hope to hear when having a c-section. The doctor let me know that I had a grapefruit sized tumor on my bladder, and my immediate thought was, did this affect the baby? The next thing I knew, I felt her tugging, and I heard the loudest cry ever. Now here is the part of the story that I know was always your FAVORITE! I would always try to replicate the sound I heard coming from you that day, a sound that will always remain in a parent’s ear. It was a very large WAAHHH! WAAHHH! At which point the doctor told us two things: first, that you were one of the most beautiful babies she had ever seen, and second, that you had quite a set of lungs on you! I concurred with both statements.

The doctor then brought you over to me, and she felt that I needed to be the first person to touch you. So despite my arms strapped to the table, my right hand miraculously reached out and grabbed your tiny, soft, and cute foot. It was a moment I will always cherish, a moment in which I will never forget, and a moment I am so happy you too enjoyed hearing about. Each time I retold the story I felt as if it further bonded us together, and I always enjoyed hearing your comments, thoughts, and reactions to your story.

Seeing you made Daddy very happy! Though he was worried about me, since after the c-section, I had to have bladder surgery to remove the tumor, we both agreed that Daddy should stay with you and accompany you to the nursery. It is there that Daddy got to see you cleaned up, he learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. Within an instant, Daddy became one of your fiercest protectors, and he cared for you for five days straight while we were in the hospital together. In fact, Daddy is the first person who changed your diaper, and though those were five very challenging days in the hospital, they were days that helped us form our strong family ties. Ties that were imperative and that we relied on for seven years of your life!

Your presence is so greatly missed. Nothing seems the same, is the same, looks, feels, or tastes the same without you in our lives. May you always know that Mommy and Daddy love you, cherish you, and that feeling will remain with us forever and always. Good-bye my Mooshi Moo angel and goodbye Daddy’s best buddy. With love from Una Moon and Daddy!

Friday, April 3, 2015

Friday, April 3, 2015

Tonight's picture was taken on April 4, 2002. Mattie was born a healthy baby at Virginia Hospital Center in Arlington, VA. I remember Mattie to be born at 1am and Peter tells me it was 12:37am. I was a real mess, so I would take his word for it! Being in labor for over a day can do that to a person! I delivered Mattie by emergency c-section and was running an 103 degree fever and it was there I developed my first migraine, which never left. As you can see, Mattie was born ON! Alert, and all his apgar scores (scores that assess the health of a newborn) were in the 9 and 10 range. So basically perfect! 

Quote of the day: When we feel love and kindness toward others, it not only makes others feel loved and cared for, but it helps us also to develop inner happiness and peace. ~ The 14th Dalai Lama

On the day before Mattie's birthday... Peter and I are traveling to Florida today. We try to leave town each year before Mattie's birthday. It just works out better for us that way for multiple reasons. So the next time you hear from me, it will hopefully be from a sunnier and warmer climate. 

We captured the daffodils blooming in Mattie's memorial garden in our commons space! 

You can see our bird feeders in the background. The birds are simply thrilled by our new feeder location this year because basically we planted every bush and tree in this space (which they love to perch on). These plantings all started when Mattie was a toddler and then of course now we plant bulbs each year in Mattie's memory. 

Next to the daffodils are the crocus! So it is a pretty yellow and purple combination!

Thursday, April 2, 2015

Thursday, April 2, 2015

Tonight's picture was taken in August of 2009. By that point we knew that Mattie's cancer had metastasized but we had no idea what that exactly meant in terms of his time left with us. Next to Mattie was his buddy Jocelyn. Jocelyn was also battling osteosarcoma and early on in Mattie's fight Jocelyn became an important ally. She was with us until the end.   


Quote of the day: The deep pain that is felt at the death of every friendly soul arises from the feeling that there is in every individual something which is inexpressible, peculiar to him alone, and is, therefore, absolutely and irretrievably lost. ~ Arthur Schopenhauer


Today marks the one year anniversary of Jocelyn's death. I do not think I will ever forget where I was when I heard about Jocelyn's death. Jocelyn's mom called me while I was away in Florida. We tend to escape town at this time of year because April 4th is Mattie's birthday. When Jocelyn's mom called me and told me Jocelyn had died, I was in total shock. Shock because I did not know that Jocelyn was that ill and was dying. This was Jocelyn's choice, of which I respect. As a young adult, I am sure Jocelyn was trying to protect me from losing someone else to osteosarcoma, but not just someone, someone who became very dear to us and helped Mattie through his intense battle. Nonetheless, I associate Fort Lauderdale now with Jocelyn's death, and some how the timing of Mattie's birthday which is already hard has another layer of complexity added to it..... the loss of Jocelyn.   

Jocelyn took her diagnosis and battle with osteosarcoma with great courage and determination. She was unstoppable and obtained a law degree in the process, got married, and was achieving great things both at work and within her community. Jocelyn had that kind of go getter attitude that was contagious, and I remember at her celebration of life ceremony everyone described her in the same manner. They may have used a different adjective, but the significance was the same! She just had a spark and a spirit, not to mention a sense of humor and paired together... watch out.

I remember one day in oncology clinic, Mattie was expressing his fear to Jocelyn about his upcoming limb salvaging surgery. Of course we all could relate to Mattie's fears, but no one quite understood the ramifications of losing a limb like Jocelyn. Jocelyn wanted to share with Mattie that even if he lost a limb, life would go on and he would still be able to do all the things he loved and live a full life. He did not understand her at all when she expressed that opinion and frankly I think he thought..... "she doesn't get it." He thought that because at the time Mattie did not know that one of Jocelyn's leg was amputated from the knee down. He quickly found that out when Jocelyn pulled up her pants and literally popped her prosthetic off! She did it in such a humorous manner that Mattie thought the whole thing was a riot and very neat. Mattie began to see that if Jocelyn could live without a leg, maybe he could too. Jocelyn helped turn around our mindsets that day. 

As I write tonight's blog, I found that something began glaring into my eyes. What was it? None other than Mattie Moon shining into the window. I have to think this is a sign from Mattie telling me that he has found Jocelyn and it is my hope in their world there is no such thing as osteosarcoma. 

Wednesday, April 1, 2015

Wednesday, April 1, 2015

Tonight's picture was taken in April of 2009. Sitting on either side of Mattie are Louise and Meredith. At the time they were attending the same school as Mattie. That particular day they came to the hospital to surprise Mattie with his own Easter Egg Hunt in the hallway. They brought him a beautiful basket and many wonderful eggs. I even recall that several eggs were actually golden in color! Mattie just loved the experience. Of course Mattie couldn't run around or even walk to pick up the eggs, but the girls helped Mattie from one egg to the next. Of course despite Mattie's condition, he could spot an egg with his eagle eyes. 


Quote of the day: I think that all of us are 5-year-olds and we don't want to be embarrassed in the schoolyard. ~ Helen Hunt 


In a way the Easter Egg Hunt tradition, that was started for Mattie by his care community, continues on at the Hospital. The hunt isn't actually planned by Mattie Miracle, but by the Charity Through Medicine Club at Bishop Ireton High School in Alexandria, VA. The club's president, Isabel approached me last year and asked whether Mattie Miracle would sponsor her Club and their service activities. All of these young women are interested in the field of medicine and service to others. In addition to running this Club, Isabel is a child life volunteer at Georgetown and has been helping Mattie Miracle since she was in middle school. So in essence she is no stranger to our activities and mission. 

What I love about tonight's quote is I do think an Easter Egg Hunt does bring out the five year old in all of us. Who can resist the idea of hunting for a colorful egg and the anticipation of wanting to know what is inside of it once you find it?

Before the Easter Egg Hunt
began, I snapped a photo of all the Club members who came to help. Since we are working in the in-patient pediatric units, keeping the number of volunteers down to a small group is important. The girls brought beautiful eggs and lots of baskets today! Of course the rabbit ears and flower headbands were a great springy touch!

In my option, or perhaps it was Mattie's, no event is complete without cupcakes. Normally I would make them, but Jess (one of the child life specialists) was kind enough to order these from Georgetown Cupcake. Georgetown Cupcake donates a ton of cupcakes to the hospital. This is where my Georgetown Cupcake addiction began. Every special occasion in the hospital, we were treated to these little loves and they are truly little gifts when trapped in a hospital room. I know one of the mom's I interacted with today was thrilled to receive and eat these cupcakes. As she said, you get stressed out in the hospital and you turn to sugar. ABSOLUTELY! I say it all the time. Forget the granola bars and healthy snacks. They really don't work. 

After the girls hid the eggs, then the hunt began! As you can see Sarah was assisting this little fellow. This little guy knew how to maneuver around and pick up eggs despite being tethered to a large IV pole and having his hand attached to a board, to keep his PICC line secure. 

Each of the children had their own style about them that they used to hunt and capture eggs in their basket. It was wonderful to see and experience. Some children looked for the eggs that were placed in more obvious locations and others went for the more challenging and hard to find locations. Like this young girl. What was so great about all of this is the kids really listened to Jess' instructions and tried not to take more eggs than their basket would hold. Thereby leaving eggs for the other children. In one particular case, I saw a young girl taken eggs out of her own basket and re-hide them because she was concerned there wouldn't be enough for a young patient who was about to enter the playroom. To me this act of kindness was noteworthy. 

I just love this particular scene! When I saw it, I had to snap it. I sat on this bench so many times when Mattie was a patient. In fact, this was exactly where Mattie did his Easter Egg Hunt in 2009. 

This is another great scene in the parent lounge. This is typically where it gets frenetic with searching and finding. Clearly there was great success by all. 


But I would have to say one of the most memorable moments for me occurred inside of a patient's room. I waited outside the room while two students went inside to deliver eggs to a young male patient. The patient couldn't have been more than 4 or 5. The rooms are small and the patient was in the midst of having a physical therapy session in his room. So there was already a lot going on in his small two by four of a room, including medical equipment and a hospital bed. In any case, through the window of the room I could see that this little boy wasn't engaged with this physical therapy, nor was he doing his exercises. However, once the girls came in with the eggs and then hid them, he seemed to spring to life. He was up on his feet, using his arms, reaching up and down, and moving his body. At that point, I could see that the physical therapy was trying to engage him and took advantage of the fact that the eggs were really incentive tools to get this child to comply with therapy. I would imagine to those observing this just seemed like a fun, adorable, and nice thing to do. That we brought this little boy some joy and happiness. But actually I was profoundly moved by what I was seeing. 

I was moved because today I was transported back in time. It could have been 2009. Replace this boy with Mattie, replace the physical therapist with Anna (Mattie's physical therapist), and replace Katie with Linda (Mattie's child life specialist)! This is a scene that plays over and over in my head. Today's example was what coordinated care is all about, this is the type of care I saw Linda constantly implementing in the hospital and applying to Mattie. Coordinating the minds and hearts of two professionals together for example to do what was in the patient's best interest. What do I mean by that? Well Mattie had to do physical therapy to maintain some sort of mobility and muscle strength, however, there was NO WAY Mattie was going to do this without it being engaging and fun. Linda understood that quite well, whereas Anna did not initially. Linda had to bring Anna around to seeing this and together using many child life techniques integrated into Mattie's physical therapy sessions, Mattie began to be an active participant. Just like I saw with this child today. The beauty of child life is it is a profession that understands the developmental level and ability of children and teens and can help design strategies to that level to help alleviate fears, stresses, and other concerns. It was actually bittersweet in a way to relive these memories because unlike so many of the other activities I did in the hospital today, this one in particular reminded me the most of Mattie.