Mattie Miracle 15th Anniversary Video

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

February 20, 2010

Saturday, February 20, 2010

Saturday, February 20, 2010

Tonight's picture was taken in our home last February. Ann came to visit Mattie, and she played with him for several hours. As you can see from Ann's picture, Mattie is multitasking. He was eating a Dunkin Donut's vanilla frosted donut that Ann brought him in his left hand, and the right hand was busy washing cars in a big pot of water. I particularly love the look of joy on his face!

Poem of the day: Flight by Claire Perkins

I stopped to watch the birds in flight
Though day was done, ’twas not quite night
The sinking sun set wings aglow
They swerved and dived and turned just so -
And disappeared before my eyes
I caught my breath in sharp surprise
Then suddenly it all was clear
As wings did shift and reappear
They were still there, though gone from sight
Still strong and graceful in their flight
When turned toward light they’re lost from view
Yet ever to their path are true
With wings aglow we’re all in flight
And when we’ve turned toward the Light
We’re never gone, just out of sight
Still on our path, still strong in flight


On our sail away from Aruba, Peter snapped some beautiful pictures. I would like to share one with you. This picture with the pink building in it gives you a feeling for the Dutch influence in the Island’s architecture. We have been at sea since we left Aruba at 5pm on Friday, and will continue to be at sea until early Sunday morning when we arrive back in San Juan, Puerto Rico.

On Friday night, the ship had a formal night, in which passengers were asked to dress in formal attire. We have grown very fond of our waiter, Ignacio (from the Philippians) and our assistant waiter, Arman (also from the Philippians). These two men can’t do enough to make us happy. So much so, that last night, when lobster was served, they came over to deshell it for us. They did not want my mom and me to mess up our clothing. It is their kind and considerate actions that I will always remember. I will remember them because they work VERY hard. The dining room sits around 500 people each sitting, and in order to serve everyone in a timely fashion, there is a whole rhythm between the crew in the kitchen and the waiters. In fact, after two nights of watching the waiters work so hard coming in and out of the kitchen with trays, I had to switch seats with Peter. I had to turn my back to the commotion because I was feeling the stress that the waiters must obviously be experiencing. We took two pictures at the table last night, which I thought you would like to see.


Left: Ignacio, my mom, and Arman
Right: Vicki, Peter, and Vicki's parents



Though we have been at sea today, the ship has a ton of activities planned to keep you occupied and engaged. My mom and I attended a cooking demonstration this morning which was hosted by the chef and the Maitre d’ of the restaurants. Both of these men are Italian, and have a long history with the Princess line. In fact, the Maitre d’ explained to the audience that he came to work for Princess when he was only 17 years old. Thirty four years later, he is still working for the same cruise line. I wasn’t sure what this cooking demonstration was going to entail, but the dynamics between the chef and the Maitre d’ was fabulous. They were witty, VERY funny, and clearly in love with food. What a wonderful combination to experience. I thought they were the best entertainment on the ship, and I couldn’t help but laugh at their jokes, the dialogue between them, and particularly their inexact way of measuring certain ingredients. Have you noticed that all great chefs seem to just know how much of things to add, without using any formal way of measuring things? It is wonderful to watch, however, trying to replicate what they are doing becomes a challenge.

We were given a handout of the galley (kitchen) facts. Some of which I would like to share with you. The kitchens are divided into many sections: 1) a fish preparation area, 2) a meat preparation area, 3) a cold kitchen (for salads and other cold dishes), 4) a soup, pasta, and vegetable area, 5) a bakery, 6) a pastry shop, 7) a fruit and cheese pantry, 8) a coffee pantry, and 9) a dishwashing area. I am sure none of this sounds particularly stunning. But how about these facts: 1) 1500 lbs of fish are prepared daily, 2) 2100 lbs of beef is prepared daily, 3) 1600 lbs of salad is served daily, 4) 28 gallons of mayonnaise is used daily, 5) 2000 lbs of potatoes are cooked daily, 6) 1700 lbs of flour is used daily, 7) 90 gallons of ice cream is made daily, 8) 7000 lbs of fresh fruit is served daily, 9) 470 gallons of coffee is consumed daily, 10) 400 lbs of sugar is consumed daily, 11) 70,000 dishes are WASHED daily, and 12) 21,500 glasses are washed daily. I am not sure about you, but these statistics left me speechless. Also consider that these are just the reported facts for passenger food preparation. However, the kitchens also cook for the 1100 crew members each day.

During the cooking demonstration, the chef introduced us to several men working behind the scenes in the kitchen. Many of whom work around the clock, day and night! The chef explained that the kitchen has staff members in it from over 34 countries. He says they all live in harmony in the kitchen, and work and eat together. You should note that the average work contract for a ship employee is six months. So each person you interact with at sea, is stationed at sea for six months, and then gets a four month vacation. Many of the crew members are young individuals from all over the world, who are working very hard to save money, and many are supporting their families back home. Our cabin steward for example is from Thailand, and she explained to Peter and me that she rarely leaves the ship during her six month contract. She prefers not to disembark in ports, so that she can continue to save her money. This is hard to do when you are in a port, because there is always the temptation to shop and purchase something. I took a picture of some of the kitchen staff, and also photographed the galley. I am having trouble with the ship's internet service, so I will post more pictures tomorrow.

After our cooking demonstration and galley tour, my mom and I went to a line dancing class. My mom is a very good line dancer. She has been taking classes for years. However, the last time I line danced was 10 years ago. Nonetheless, dancing has been a part of my life for many years, and despite my mental state, I had no trouble jumping right in and learning the steps. In the later part of the afternoon, I went to the ship’s spa and had a massage. I continue to be a bundle of stress and therefore it is very hard to give me a massage, because there is just so much to concentrate on. Before I received the massage, the person first consulted with me, and wanted to know why I was so stressed out. Well since she asked, I told her. She handled it well, and then began to tell me what stress does to my muscles and blood. According to her, she says that stress makes your blood more acidic. In order for the body to compensate for this, and bring one’s pH back into balance, the body strips calcium from the bones. It is the calcium that comes out of the bones, that forms muscle knots. I have no idea if any of this is true, and I don’t have the energy at this point to look it up. But it sounds plausible. However, after the massage, she wanted to sell me a product to prevent calcium from being taken from my bones. Not unlike any other aspect of the cruise, commercialism was alive and well in the spa. I had no problem shooting down her suggestions, but having to fight off this hard sell, really does reduce the effects of the 50 minute massage.

As we begin to pack up to return home tomorrow, I have realized that seven days has flown by. Peter and I are so stressed out, that it most likely would take several weeks for us to even find a balance in our lives again. Assuming that such a thing is even possible. With that said, I haven’t been on a cruise in ten years, and either I have changed dramatically or cruising is not what it used to be. Probably both are true. I couldn’t help but observe how commercialism is alive and well on cruise ships. It seems to me no matter where you are on the ship something is being pitched to you to purchase. Everything from drinks, photographs, wine tastings, specialty coffees, cookbooks, unlimited sodas, flowers, art, exercise classes, and spa treatments (my favorite flyer that I have seen around was lose weight instantly with new age technology!). The assault of products also puts me on the edge and prior to Mattie’s death, I most likely could put all of this into context, but now my system gets overloaded easily. I find myself walking around like Charlie Brown, in his famous Christmas TV special. Like Charlie Brown, I am trying to appreciate the actual experience or time away to find meaning in my life, but instead, I am bombarded with materialism (like when everyone made fun of Charlie Brown for buying the smallest and most fragile Christmas tree, rather than a more substantial and glitzy one). The problem with all of this is I seem to be the only one troubled by this bombardment (well Peter and my parents are too, so I know I am not alone in my feelings at least), and I can’t help but see a connection between the issues we see present in our society and how I see the cruise industry changing. I am so bothered by this that I actually told Peter and my parents that I wanted to write an article for a newspaper about my observations.

We thank you for checking in with us this week, and keep us in your thoughts as we travel home tomorrow. Re-entry into our daily life I know won’t be easy. I would like to end tonight’s posting with a message from my friend, Charlie. Charlie wrote, "I love this picture of Mattie being Mattie. All boy, all joyful noise and enthusiasm. It's so hard to grasp that with all the strides he made after the surgeries, that he could lose the war. Some days I just can't wrap my head around it so I can't even imagine what it is like for you. What fascinating things you are learning as you tour the islands; I can almost see myself on these tours with you. Like you, I think how fascinated Mattie would have been by things like the color changes flamingos go through and probably asking about whether eating other things might turn them other colors...? He had an amazingly inquisitive spirit. I do find your change of spirit about the cruise interesting; you did not want to go but now you are reluctant to return back here to DC not that anyone would question that); it seems that although there is much sorrow regardless of where you are, the trip has been good for you overall. As always I hold you gently in my thoughts."

February 19, 2010

Friday, February 19, 2010

Friday, February 19, 2010

Tonight's picture features Mattie smiling after he worked diligently with Peter on assembling a huge pirate Lego ship. This was a labor of love, but Lego projects were not only therapeutic for Mattie, but really for all of us. It took our minds off of cancer for a while, and allowed Mattie the chance to be a child. In addition, the nurses got so used to Mattie's creations, that they would periodically check in to see his progress. Naturally Mattie loved this attention, and this became an excellent social outlet for him as well. I shall never forget the Lego shark featured in the picture. That shark attacked my fingers and hands more times than I can remember. Mattie loved my reactions to the attack and I remember playing for hours with this pirate ship.

Poem of the day by Kristin Binder....Thank you Kristi (a fellow Osteo mom!)

I talked about you yesterday.
I kept tears from my eyes.
Right up until the topic came
of how we said our goodbyes.
And then the choking in my throat,
returned, too much to bear.
I struggled through grief's tightening grip
to fill my lungs with air.
My heart raced. My palms clenched tight.
I wanted to shut down.
I felt those moments pouring in.
I worried I might drown.
Tears came calling once again
stinging hot against my cheek.
And in my mind I played over
that final, painful week.
I thought about the cancer
and how it ravaged you.
I remembered the sense of hopelessness.
I shuddered at what I had to do.
I wonder if the words exist,
to convey how it made me feel.
Even all these many months later,
those last seconds feel surreal.
I don't know if the day will come
when guilt will leave me be.
I just pray you know it was out of love,
that I chose to set you free.

The Caribbean Princess arrived this morning in Aruba. We have therefore seen two thirds of the “ABC” islands because we have visited both Bonaire and Aruba. The “ABC” islands are all Dutch territories and are comprised of Aruba, Bonaire, and Curacao. Aruba is the smallest of the Dutch islands, nonetheless it may be one of the most prosperous.


Aruba has its own language, which is also used in Bonaire and Curacao. It is called Papiamento. This unique language is a combination of Portuguese, Spanish, Dutch, English, African, and Indian words. In fact, it is a very melodic language, and when people talk, it almost sounds like they are singing.

Gold was discovered on the Island in 1824 and was mined successfully until 1913. However, as the yield turned meager and mining became unprofitable, and the aloe plant became the primary agricultural crop. The Island soon became the world’s largest aloe producer. In addition to aloe, Aruba also has a very profitable oil refinery on the southern most tip of the Island. Nonetheless, the main source of income for the Island is tourism (of which 70% comes from the USA).

The Island looks similar to Bonaire, in that it is flat, with a desert like terrain. There are iguanas, donkeys, goats, and dogs freely moving about the streets. Like on Bonaire, the iguanas and donkeys are protected animals on the island. We took some pictures of Aruba today, which I have attached to share with you.


Left: View from the top of a the Casabari Rock Formation.
Right: Notice the iguana on the cactus (look left)!




We went on a three hour tour of the Island, and our first stop took us to see a lighthouse named, The California Lighthouse. I have always been enamored by lighthouses, their history, and the struggles lighthouse operators and their families had while undertaking this challenging job and lifestyle. I was saddened to hear that visitors are no longer allowed inside the lighthouse because recently someone jumped out of it and fell to his death. However, the terrain outside the lighthouse is fascinating because you can clearly see you are walking on an ancient sea bed floor. The ground is covered in coral. Though based on how the island was formed through plate tectonics, it isn’t surprising to see this ground cover, but it is definitely different and noteworthy.

I don’t think I will ever forget our tour of the Casabari Rock Formation. Picture huge rocks that were once underwater, carved by water over time, and now they are above sea level, and you can walk through them. That sounds easier said than done, because in order to get to the top of the formation to view the Island, you have to navigate your way through the inside of the rocks. This passage way is very narrow, and takes on two way traffic (people walking up to the top of the formation, and people coming down from the top). Between the heat, the narrow passage way, and the requirement for people to take turns using the passage way, chaos unfolded. People started getting snappy and hostile with each other. We did manage our way up and down this pathway, but I would say overall, it wasn’t worth the hassle and the hostility. I snapped some pictures of what I am trying to describe.

Left: Here is the two way passage way I was attempting to describe to you.
Right: My mom and Peter squeezing through the rocks!














The tree of the Country is called, Divi Divi (pronounced like Dee Vee – Dee Vee). The tree has the leaves like a mimosa, but they are very low to the ground, and almost look like an umbrella. Peter took a picture of my mom and me in front of a Divi Divi.

Our next stop was to an ostrich Farm. I learned a lot about the ostrich today. Male ostriches have black feathers and the female ostriches are grey in color. Ostriches are not very bright birds, since their brains are about the size of the walnut. However, these birds can move 45 miles per hour. Their legs are also extremely powerful, and one kick from an ostrich can do deadly damage. These birds mate for life and can lay up to 70 eggs per year. However, around 35 eggs are fertilized and produce baby ostriches, and the other 35 eggs are unfertilized and can be eaten. One ostrich egg is equivalent to 24 chicken eggs! I also found it interesting that ostrich corneas can be used to do human eye transplants. Peter captured these birds quite well today, so I am sharing some of his pictures with you, and I am also sharing a picture of the eggs with you (which are the size of a grapefruit). You can clearly see the difference in the shell of a fertilized and unfertilized egg.

Left: Two female baby ostriches. They about 9 months old.
Right: A male ostrich.



















Left: Notice the slight difference between these two eggs. The one on the left is beige in color, and has a more gel like texture. This is the fertilized egg. The egg on the right, has a white shell and is the unfertilized egg.

The last stop on the tour was to the Natural Bridge. These are rocks that through water erosion formed a bridge. In addition to the beauty of this bridge, what caught my attention was the rock creations created by people who visited this area. It looked like people were using the scattered rocks on the ground like Legos (of course my mind couldn’t help but think of Mattie and how he would have loved rock like legos). The legend is if you build a rock design by the natural bridge, you will be coming back to Aruba again.

Left: Peter and I in front of the natural bridge. The Island was extremely windy today!
Right: Vicki and her parents standing and sitting next to a rock like creation that someone made and left behind.


After a full day, we are all back on the ship. The ship is getting ready to set sail for Puerto Rico. We will be at sea all day on Saturday, and will be flying back to DC on Sunday. Amazing how fast a week goes by. The ship was supposed to leave port at 4:30pm, however, we are still sitting at the dock. Why? Because the ship was waiting for two people to come aboard. Funny how the rest of us could manage to get back in time for departure, yet these two individuals could not. Peter, along with about 50 other people standing on their cabin balconies started chatting with each other. They figured out the names of the passengers who were late to get back to the ship, based on an announcement made by the cruise staff. The laughter from Peter and these folks were a riot. I can hear it as I am typing the blog. They even figured out which cabin room these two people are staying in, and they joked about TPing the door of their cabin tonight. At which point, I interjected and said absolutely not! Who knows why these people did not get back to the ship in time for departure. Maybe there is a good reason, or maybe not. But I am pretty sure that these two people are severely embarrassed since everyone hanging over the balconies clapped for them as they boarded the ship. A little cruise humor I suppose.

February 18, 2010

Thursday, February 18, 2010

Thursday, February 18, 2010

Tonight's picture features Mattie playing the drums with Sally, the story lady in the childlife playroom. Sally would visit the hospital each week and dress whatever part or theme she was covering that day. The theme, as can be seen in the picture, was African American story telling and music. Mattie always enjoyed his time with Sally, and I have to say so did I. Sally had amazing energy, and truly loved what she did, and also had a way of bringing subject matter to life, which is key for children. As you can see from the picture, Mattie was moving his arms, and playing the drums. There were times when I looked at Mattie and wondered if he ever had surgery on his arms. He was able to move this arms and hands quite well, and really his abilities far exceeded my expectations. There was no slowing Mattie down, and this happy moment in the childlife playroom, I believe captured his spirit quite well.


Poem of the day: From the Ashes of Grief by Lana Golembeski -

In the early morning fog of a spring day
The sunlight drifts slowly across the lake
Lifting the dark shadows of night.
The honking geese frolic in the early morning rays of sunshine
While the birds sing of promises yet to come.
Through the dark clouds of grief,
Slivers of sunlight filter down.
The pain and fear residing in my heart
Is starting to give way
To the hope of finding joy once again in my life.
The warmth of the sun flows through my body
And I now feel and see flickers of that joy.
It is but a fleeting moment in my thoughts.
But it fills me with the hope of perhaps
Finding peace once again.
The forever tears cleanse my heart and my pain.
They pave the way for love and laughter once again in my life.
My heart will forever be empty from the loss of my precious child.
But the sparkling sunlight spreads light around that hole in my heart.
Gentle healing is beginning; springing anew from the ashes of grief

The Caribbean Princess arrived this morning in Bonaire. We have never visited this island before, and therefore had no idea what to expect. Bonaire, translates into “good air.” Unlike Dominica and Grenada which are very mountainous, Bonaire is relatively flat and has a desert like appearance. We took a tour of the Island, and learned that Bonaire is still a territory of the Netherlands. Our guide explained to us that there is virtually NO crime on the island and no one ever locks the doors of their houses or cars. This gave me great pause, because I can’t even imagine what living with that level of safety and trust feels like. In the town square this afternoon, my mom and I met a New Yorker who now lives part time in Bonaire. She confirmed the fact that you never have to lock your doors. Can you imagine?


Bonaire was sighted in 1499, by a group of explorers led by Amerigo Vespucci. Like most Caribbean islands, tourism is the number one industry in Bonaire. In addition, Bonaire also produces salt. They flood low lying areas with sea water, let it evaporate (I assure you the sun is strong here, I have the burn to prove it!), and basically you are left with mounds of salt that can be seen all over the island. Cacti are all over the island as well, and it is a fascinating sight to see, because typically I associate the cactus with deserts. However, there is beautiful water everywhere, and still you observe plants you most definitely aren’t expecting to see. The water is an incredible blue color, and VERY clear, which is why Bonaire is known all over the world for its diving and snorkling.

Bonaire is known for their flamingos and donkeys. I have never seen flamingos freely roaming about in the wild! So this was a memorable sight to me. I learned a lot about the flamingo. You can tell the gender and the age of the flamingo in the following way. Male flamingoes have an “S” shaped neck, whereas female necks are straight. Flamingoes mate for life and produce only ONE egg per year. Both parents take turns sitting on the nest until the egg is hatched, and once hatched the baby flamingo is white. The white turns to gray, and eventually as the bird starts eating algae and shrimp, the feather color turns to pink. The older a flamingo is, the brighter the pink color. In fact, the color may almost be orange by adulthood.

We came across a school of donkeys on our tour. These donkeys are ancestors to the donkeys that came over on ships in the 1600s with the Spanish. Donkeys are protected animals on the island, and in fact there is a donkey sanctuary on the Island that provides for their care and protection.
Later in the day we had the opportunity to go shopping in town, and Peter snapped a picture of my mom and I. The whole town is very orderly, clean, and clearly you can see the economy appears to be a bit stronger than the other islands we have visited so far. We even saw housing prices, since we passed a real estate agency. Houses are not inexpensive on the island. We saw houses that ranged from $800,000 to over a million dollars. Our guide told us that education is imperative on the Island. Children begin going to school starting at age 4. Once children complete their secondary education, the government pays for them to go to either Curacao (another island possessed by the Netherlands) or to Holland for college. We also learned about their health care. Each resident has health care insurance through either their employer or the government. However, if you need surgery in Bonaire, you need to go to Curacao because there are NO surgeons living in Bonaire. I thought that was revealing, however, if you (the patient) land up going to Curacao the government pays for you and a friend or family member to fly to Curacao, as well as all your expenses.

Peter and I both had our teary moments today. Or I should say I had several. It is hard to experience the cruise without thinking about Mattie, and how he should be with us. Mattie would have loved the experience, and when I see other children aboard the ship, it is hard to understand why I am unable to have my son with me. As I have been shopping on this vacation, I have had at least three people comment on my glass beaded bracelet, the bracelet that Mattie made me. In fact, one woman yesterday on the cruise wanted to know where she could get a bracelet like it. I told her my son made it, and then stopped at that. She told me my son had good taste. Don’t I know it! Each night at dinner, we all cheer our glasses to Mattie. So his presence is definitely thought about each day.

The ship is departing Bonaire, and we are on our way to Aruba tonight. Aruba is our last island stop. We have a day at sea on Saturday, and then fly home from San Juan, Puerto Rico on Sunday. It will be hard to come home for various reasons. One, I will miss the weather greatly and second, I realize I need more time away from my usual surroundings, which can be intense and at times very depressing.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "What a wonderful trip; like you I just wish you could have taken it as a family with Mattie along to appreciate all of it. I do think somehow that he is with you, watching it all through your eyes and enjoying all the things that would have fascinated him were he here with you physically. I am really enjoying all your stories and pictures; I am vicariously exploring the islands with you and enjoying learning all about them. I was especially fascinated by the information about nutmeg and other spices. I thought it all was absolutely amazing and really interesting. I know that along with all of your faithful blog readers you have another companion—grief and I realize that its presence is frequently overwhelming but I do think you are doing amazingly well. Just go with it, be kind to yourself and to each other (you and Peter). Today’s practice was very challenging for me; I made progress in one area but had to take a step back in another, so it is with our lives, sometimes moving forward in one way, means giving way in another so don’t push yourself too hard. I hold you gently in my thoughts."

February 17, 2010

Wednesday, February 17, 2010

Wednesday, February 17, 2010

Tonight's picture illustrates what life was like when Mattie was quarentined in his room. Mattie was quarentined several times because it was thought that he contracted the bacterial infection, C. diff (Clostridium difficile). So Brandon, Mattie's big buddy, wasn't allowed into his room. Which is why you can see Brandon standing in the doorway and not entering Mattie's room. Nonetheless, Mattie was kept busy by Anna (Mattie's physical therapist) and Linda (Mattie's childlife specialist). Anna was working on getting Mattie's legs moving, and was encouraging him to stomp on an air rocket with his foot. As you can see from the picture, Mattie and Anna united forces and sent the rocket straight up in the air. Though Mattie was fighting cancer, we always keep his room decorated and lively. You can see his IV pole is also filled with decorations, from the praying cranes that Junko's family made for Mattie, to the Wall-E decoration that Brandon made and eventually gave to Mattie when his treatments were done. Naturally, I have kept these special items, and like so many of Mattie's things, I am unable to part with any of them. 
  
Poem of the day: Jesse's Piece by Robert Brault

The world’s a jigsaw, once I thought,
With each of us a piece to fit,
A predetermined Grand Design
And each of us a part of it.
I thought that God must surely have
A blueprint of His final goal,
And all who come into this life
Are meant to play some fated role.
But when my little Jessie died,
It seemed to me but sheer caprice.
Where fits a child in God’s design
Who never lived to add her piece?
How often did I walk alone
To still the anguish in my heart,
To ask why God would make a plan
In which my child had no part.
One day, upon a village square,
I happened by a tiny shop.
What random step had led me there?
What in the window made me stop?
It was a quilt, a crazy quilt,
Each piece a brightly-colored patch,
A joyful, glowing work of art
From scraps you’d think would never match.
I looked upon the quilt in awe
To think a thing so oddly fine
Was stitched from fragments never made
To fit to anyone’s design.
I wondered then if God might wish
That in this way His world be built,
Each life a motley-colored scrap,
And He the weaver of the quilt.
If such be true, I realize,
My child’s life, though short it be,
Is yet a joyful, shining patch
In God’s eternal tapestry.
I looked upon the quilt and saw
A patch that seemed but sheer caprice,
So whimsical it made me smile.
I knew it was my Jessie’s piece.


We arrived in Grenada this morning. Like Dominica, Grenada was sighted by Christopher Columbus on his third voyage in 1498. The British and the French both sparred over the possession of the Island, and in 1974, Grenada achieved independence. Grenada is known as the “isle of spice.” The Island is filled with nutmeg, cinnamon, and cocoa trees. We went on a five hour tour and learned a lot about the Island. Just like Dominica, Grenada’s main industry is tourism. It once was agriculture (bananas, spices, flour, etc…) but in 2005, Hurricane Ivan hit the island and destroyed many nutmeg trees and businesses. Several of these businesses never recovered. We learned that there is a 40% unemployment rate, which is far more significant than Dominica’s 25% unemployment rate. Grenada appears to be built up more than Dominica, but it clearly doesn’t have the lush rainforest like terrain like Dominica. In fact, Grenada is experiencing a drought and a water shortage, from their lack of rain fall this year.




On our tour, we first visited the site of several forts, Fort Matthew and Fort Frederick to be specific. These forts were built by the British and the French over the years to protect the Island from attack. Needless to say, as soon as I saw the name “Matthew” my heart sunk. We passed a cemetery along the way, and it is interesting that no one is buried in the ground on the Island. All the plots are above ground. Our guide said that with flooding, burials wouldn’t be productive. In addition, they only allow a loved one to be buried in a plot for 15 years. At which point the grave is removed. I was curious about this, because there was no explanation for why a person only gets memorialized for 15 years and then removed.

We also visited a spice mill today. At this working mill, they harvest nutmeg and cocoa. Both nutmeg and cocoa grow on trees. These trees contain large fruits, which hang from their branches. It is within these fruits that you can find nutmeg or cocoa. The process of revealing the fine products that we use today in our kitchens was fascinating. In terms of nutmeg, we took a picture of a nutmeg tree. You can see the round fruit like pods on the tree. As the fruit ripens, it literally splits open to reveal a nut in a round hard shell. Attached to this shell, is a red like substance, called mace. Mace is used as a spice as well as to make dyes used to manufacture lipstick. In order to get to the nutmeg, you have to crack the shell to reveal the nut. This nut can then be ground to produce the nutmeg powder we see in our grocery stores. What is fascinating about this is every piece of the nutmeg is useful. The actual fruit containing the nut is used to make local wines. The shell of the nutmeg is used on the island to make walkways, and naturally mace and the nut are used to cook with.

Left: A picture of a nutmeg tree. You can see that the fruit, almost looks like a lemon, with the texture of a peach.
Right: On the table you can see the dried nutmeg fruit that has been cracked open to reveal the round hard shelled nut with the red mace wrapped around it. Once you crack open the shell, you will find the actual nutmeg nut, that can be ground to produce the powder. Inside the bowl on the table you can see the nuts with the shell on (they look shiny), and nuts without their shells on.



Making chocolate is an equally interesting process. Cocoa comes from a tree as well. On a cocoa tree grows large yellowish red fruit. Once you cut open the fruit, you can see large whitish gel covered seeds. These seeds are removed and allowed to ferment for a week or so. In the fermentation process, the whitish seeds become brown in color. These brown seeds are then laid out in the sun to dry and turn hard. I picked up one of these brown seeds and cracked it open. Out popped a small substance that smelled just like chocolate. Needless to say, it takes many cracked seeds to produce a decent amount of chocolate. The island doesn’t produce or sell any edible chocolate. Instead it exports it to other countries to produce the beautiful and tasty products we buy and love to eat.

Left: A picture of Ron, our tour guide, with Peter in the background. Ron cut open the fruit from a cocoa tree. Notice the white gel like seeds I told you about.
Right: Ron is showing us what the seeds look like after they have been fermented and dried in the sun. The seeds are hard and brown. It is within these seeds, that when cracked you find chocolate. However, this chocolate can't be eaten as is. It has to be cooked and processed.



The next stop on our tour was to Trickle Falls. At the falls and at other stops, were people who dressed up in island attire, wearing for example large baskets on their heads filled with fruits and flowers. They wanted tourists to take pictures of them for money. In addition, at the falls there were young adult men who would jump from a cliff into the water falls if you paid them. Now this concept seemed ridiculous to me at first. However, I did see that the women in dress and these young men jumping from the cliff were indeed working. They do this to earn money from tourists, and unfortunately there is not much else in terms of employment available to them on the Island. So my mom and I approached the cliff jumpers. They were VERY engaging men and one fellow by the name of Brandon, introduced himself to me, shook my hand, and explained that he has been jumping for years, and really appreciates whatever money we would leave for him and his friends. You had to experience this conversation to understand why I felt compelled to give him money to do this. Brandon jumped from the cliff into a pool of water, maybe 100 feet below. However, before he jumped, he shouted out “hi Vicki and Virginia.” He waved and told us he was jumping just for us. See what I mean……. engaging and charming! After he jumped, he came up to us to find out how we thought he did. He wished us a beautiful day and to go with God and have safe travels. I attached a picture of Brandon and the cliff. At the very top of the cliff, you can see Brandon in a red shirt with blue shorts!

What became abundantly clear is that Grenada is very indebted to the United States. The tour guide explained how the US entered the Country in the 1980s, to restore order, since the Country was under communist regimen, and under this regimen their prime minister was killed and every resident of the island was under “house arrest.” The tour guide also explained that while the US occupied the Island to handle this civil unrest, islanders were killed in the process. The US, under President Reagan, built a new hospital on the island as a way to show our sympathy and remorse for the lives killed during that time. I realize we live in a time where we may feel that the United States is not valued or welcomed by other nations, but hearing our tour guide today retell his living history was very insightful. He made us all proud to be American, because he made it clear that the island would not be thriving and living in peace without the United States’ support.

This afternoon, Peter and I attempted to relax. We were up early for the tour and the ship is amazingly crowded. So escaping for periods of time is really needed. I know for Peter there are aspects to being on vacation which are very challenging. I notice in the late afternoon, as he sits outside on our balcony staring at the ocean, I can see his lips moving from inside our room. At first I did not make much out of it, until I saw him doing this each day. So today I asked him what he is saying or thinking about while outside. Naturally I should have realized he is thinking about Mattie and reflecting on him verbally. I know being outside seems to affect Peter and me the same way. It seems like it connects us to Mattie. Peter loves being on the water, but I think unlike past cruises, this cruise is very bittersweet. This is the first cruise we have taken as parents. Our previous cruises were all pre-Mattie! As Peter walks the decks of the ship, he realizes Mattie is not with him and how much Mattie would have loved this experience. If Mattie were with us, he would have been up and out early with Peter checking out the ship, all its parts, lifeboats, and gadgets. Now Peter does these things alone, which saddens him and with this great sadness naturally comes tears.

I think Peter and I were both hoping for a panacea for our grief. But we are learning such a thing does not exist. We must experience this process as difficult as it is. Yes there are moments, where we can step out of it, and we force ourselves to. But I don’t want you to think that while we step into these happier moments, we don’t also carry great sadness with us. We do! It tings everything, and at times it also becomes overwhelming. So overwhelming, that we wonder if we will ever feel better, because if a cruise can’t make a dent into our feelings, what will? You may say…. time, but I find that statement just as trite as when people at the hospital used the terminology of “new normal” with me to describe how to adjust to life with cancer.

I would like to end tonight’s posting with three messages. The first message is from Kristen, Mattie’s oncologist and our friend. Kristen wrote, “I woke up in the middle of the night and swore that there should be a Mattie Moon with the brightness of the light reflecting off the snow. I couldn't find the moon...but still thought of Mattie as I find myself doing again and again. Thinking of you, this Tuesday and always."

The second message is from my friend, Charlie. Charlie wrote, "I read this poem and had to send it on to you. I could just see "Mattie's piece," brightly glowing with all sorts of interesting things...taken alone it would almost be a quilt of its own. I hear what you are saying about unexpected things causing you to swing back and forth between calm and intense grief. It is so difficult, one moment you are having a conversation about some topic and then something brings your mind quickly back to Mattie and all he went through and your life without him now. It is so hard but I want to share that the grievers I meet at Haven tell me although it never, ever goes away, the intensity of the grief softens, becomes muted so that it is an ache rather than a cutting pain. However, just as the sun fades colors with time, it happens gradually so that you don't see it day to day, but one day notice that on seeing something that would have caused tears you find instead a sad smile. Be patient with yourself, let the healing come gradually to you as it will. As for the trip, take lots of pictures; it will be better in retrospect, believe me. I hope today brings some good moments with it. I hold you gently in my thoughts."

The third message is from Mattie's preschool teacher, and my friend, Margaret. Margaret wrote, "Reading all of your postings in one sitting was insightful for me Vicki as I sense that in little ways, each passing day holds a few more bright spots for you and Peter. And this is what all of our lives are...a series of little steps, sometimes forward, sometimes back, sometimes I don't know in what direction, that we put together hour by hour each and every day. And as Charlie mentioned in one of her notes, our lives are about progress not perfection in every thing we do. Progress does not have to be measurable or quantifiable; it can be a feeling; a ray of sunshine that penetrates our grief, angst, sadness, our existence; a sense in any given moment of well-being and perhaps gratitude for the blessings we are gifted with. We often simply don't have the ability to recognize or acknowledge these gifts....but they do surround us and sometimes, just for a moment, we may be able to embrace them and just smile!! That is my prayer for you today. As you wander in the beauty and sunshine today give yourself a hug, give Peter a hug, give your parents a hug....bask in the sunshine and love that I know surrounds and supports you and just smile!! As always you are in my thoughts."

February 16, 2010

Tuesday, February 16, 2010

Tuesday, February 16, 2010 -- Mattie died 23 weeks ago today.

Tonight's picture features Mattie in the hallway of the PICU. In the background is Linda (Mattie's childlife specialist) and Jenny (Mattie's art therapist). In order to motivate Mattie to walk, Jenny and Jessie (Mattie's art therapists) designed a clever and yet gross incentive system for him to track his walking progress. If you look closely at this colorful box, you will see a gigantic model magic cockroach! With each lap Mattie took, the roach would move one space on this board until the roach ultimately moved through the tube like system to reach the end, which was signified by a cup with wood cedar chips in it for the roach to fall into. It was completely gross, and Mattie LOVED IT! Naturally I still have this box, not because I like the roach, but I like what this box signifies and how much it meant to Mattie. In the picture you can see Mattie holding a plunger, which was used to send the roach through the tube to get to the finishing cup. Mattie was also wearing his zoo pajamas in this picture. Mattie loved his pajamas and insisted on wearing them in the hospital, rather than clothes. However, this particular pajama set was the set he was wearing on the day he died. In fact, the nurses had to cut the pajama set to get it off his body so I could keep it. Needless to say, I have this set, and it will never be washed.

Poem of the day: There You'll Be by Debbie Tsotaddle

You’re on every corner, turn and twist.
Every old familiar spot whispers how your missed
In our dreams we can see you soar above the sky
A free bird at last with so many left behind
When reminiscing of you, on our face a smile shall appear
Ever reminding us that in our hearts and memories you are still near
We were blessed to have you in our lives
And will always feel sorrow for the dreams you left behind
A part of you will always remain in the hearts of we
Always reminding us that where ever we are….There you’ll be.


We arrived in Dominica this morning. Dominica (pronounced Dom-min-knee-ka) was first named by Christopher Columbus, who sailed by the island on November 3, 1493. He christened it Dominica in recognition of the Lord’s day and continued north without making landfall. The French and the British sparred for control of the island for 200 years, and in 1978, the island gained its independence. Our tour guide this morning was a live wire. She was chatty, humorous, but also knowledgeable. She made the four hour excursion interesting. We learned a lot about Dominica. Like most Caribbean Islands, its primary industry is tourism, and it exports things like bananas, mangoes, and avocadoes. In fact, she referred to bananas as “green gold.” There is a great deal of poverty on Dominica, and though approximately 20,000 people live on the island it is NOT built up at all. In fact, the government protects over 60% of the land, so it can never be built upon. Our guide said however, that the beauty of Dominica is that NO one goes hungry. The Island can sustain all its residents by its own vegetation, which is truly a remarkable statement. The way I would describe the island is mountainous and filled with rainforests and natural falls. I have attached some pictures for you to see some of the sights we saw today! I particularly loved the poinsettia tree!!!


Left: Vicki and her parents in front of Layou River. The longest river on the Island, 11 miles long.
Right: Vicki and her mom, as they head down to see Jaco Falls, one of the islands accessible natural water falls.















 



Left: Peter in front of Jaco Falls.
Right: A beautiful Poinsettia tree on Dominica.





















What stuck me about our tour guide was her incredible knowledge of herbs and plants that are used for medicinal purposes on the Island. In fact, she could list just about any plant or herb on the Island that could be used for various illnesses, everything from arthritis to blood diseases. She swore by castor oil and how it reduces fevers instantly. I don’t know, but she was so convincing you almost wanted to try her remedies. In addition to her understanding of her environment around her, she also took great pride in her culture and her country. She knew just about every fact regarding Dominica, which made her engaging to listen to. We passed one of the hospitals on Dominica and all I can say is it gave me great appreciation for access to quality healthcare we have in the US. She went on to tell us that 20 or more people share a hospital room at one time. I couldn’t even imagine that, especially if dealing with a life threatening illness.

Dominica was celebrating Mardi gras today. Everyone was on holiday and there was singing and dancing in most of the streets. Our guide had quite a perspective on life. She says that the Island folks believe that you can do whatever you want during Mardi gras, and that tomorrow (the beginning of lent, Ash Wednesday) you go to church and ask God for forgiveness. I wasn’t sure how I felt about this statement, because it goes against how I normally live my life.

Peter and I had many Mattie moments today. In fact, when we embarked the ship this afternoon, we were waiting by the elevator to get to our room. While waiting, there was a little boy with his parents. This little fellow was telling one of the Princess crew members about his adventures on the island. I wasn’t expecting to see this young boy, and I was caught off guard. The moment quickly passed, since we boarded the elevator, but for that moment in time, I felt great sadness and was about to cry. We did some shopping right by the pier today, and while walking passed the vendors, I noticed wooden toy cars, toy lizards, and other things that would have captured Mattie’s attention. It is very hard to see these items and know they are not part of my life, nor do I have someone to buy them for. The final thing today that stopped us in our tracks was a song they were playing out of the deck of the ship. It was “who let the dogs out!” Peter and I both looked at each other, because when Mattie was a baby, Peter would sing this line to Mattie to capture his attention. All of these things that stopped us in our track today, seemed fitting, as today is yet another TUESDAY, or the 23rd week marking Mattie’s death.

Peter and I are trying to enjoy our surroundings and this wonderful opportunity. But it is difficult! There are times when we feel nothing can bring us happiness, and during these times, even on a special cruise, things look completely bleak. Tonight we are sailing to Grenada. Grenada is known as the “spice island.” Thank you for checking in with us, reading the blog, and of course writing to us.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am glad the cruise is proceeding well. Your picture of the chickens reminded me of the picture of the duck and babies that you posted some time ago. One thought seems to bring on a host of others; since it happens to me when I read your blog or sometimes when I see something I know would have interested Mattie, I know you must be overwhelmed by this constantly. I think you are doing very well, balancing time alone and social time; doing things and taking time to reflect/grieve. Good for you for being assertive and getting what you need; so often we don’t want to seem pushy and so we don’t do what we need to for ourselves. Today’s practice was all about alternating and combining strength and balance, sometimes this is very difficult to do in life, we push too hard or not enough. I hope you find that “sweet spot” that is just enough of everything to be a satisfying challenge but not overwhelming. I hold you gently in my thoughts."

February 15, 2010

Monday, February 15, 2010

Monday, February 15, 2010

Tonight's picture was taken in the PICU of the Hospital. Mattie is holding two items. One was a Texan armadillo, which he loved because he received it from his SSSAS friends, Louise and Meredith. I find it ironic that the word armadillo in Spanish  translates into "little armored one." Seems quite fitting for Mattie, who was fitting quite heroically for his life. The other item Mattie was holding was a cupcake I made for him. In fact, I entered that hospital admission with two dozen cupcakes. Mattie negotiated a deal with me. For each lap of walking he did, or if he actively participated in physical therapy, this would earn him a cupcake. As you can see by the cupcake in the picture, that day was a GOOD day, Mattie worked hard and the cupcake brought a smile to his face!

Poem of the day: Just Because by Raivennette

Just because I no longer

stand in front of your eyes
doesn't mean you can't see me.
Close them,
I am there.
Just because I no longer
answer when you call my name
doesn't mean you can't hear me.
Speak softly, listen carefully,
there is my voice.
Just because I can no longer
touch your hands
doesn't mean you can't feel me.
Hold on to another,
my arms are there.
Just because I am no longer there
to show you I love you
doesn't mean my love is gone.
Place your hand on your heart,
feel its beat.
I am there.
Know that I am with God.
Know that God is with you.
And in that we are still with each other.
Just because...

 
As we slept last night, the ship sailed to St. Thomas, which is part of the US Virgin Islands. St. Thomas is known for its beautiful beaches and SHOPPING. When we disembarked from the ship this morning, I attempted to take a picture of the Caribbean Princess (the name of our ship) for you. As you can see, it is one huge ship! However, despite its size, the crew is very efficient, and watching their safety precautions as people get off and onto the ship is a sight to see and to experience. All of the people of St. Thomas who we interacted with while shopping were engaging and very personal. In fact, we met many northeasterners who decided they had it with their fast paced city life and the cold weather and relocated to St. Thomas over 29 years ago. You have to admire that spirit and courage. The weather in St. Thomas was beautiful, warm, and sunny. We came across several Mattie noteworthy sights today, so I naturally had to take pictures. The first sight was of a HUGE iguana, basking in the glorious sunshine, as he was sitting on a rock. Mattie would have been fascinated by this, especially since this iguana almost appeared to be posing for the camera. The second Mattie approved sighting was of a chicken family, right in the middle of town. As you can see I snapped a picture of a chicken, a rooster, and their children! I am not sure if I have ever seen baby chickens walking around a city before. As I was taking these pictures, Peter was laughing at me. After all, how many people go on a cruise to take a picture of chickens? I don’t know, but all I could hear in my head was Mattie saying to me, “there are a mama chicken and her babies. Just like you and me!”
 


Peter was a real sport today. He walked around with my mom and me while we were shopping. While walking with us, he too had two noteworthy things happen. The first noteworthy thing is the fact that there are MANY Boston Red Sox fans in St. Thomas. Peter was wearing a Red Sox shirt today, and I can’t tell you how many people shouted out “go Sox!” My mom had never experienced this before, as I had, so she was stunned. It is just ironic, that no matter where you go, the Red Sox cult is alive and well! The second thing today was Peter came across a penny on the street. He picked it up, and I reminded him about the poem I posted on the blog last week. The poem mentioned that pennies found on the ground are a sign sent down from an angel above. So I told Peter that Mattie was with him today, as always.

Peter and I are trying hard to find peace and quiet around us and within ourselves. Though being on a cruise with 3100 passengers does make this somewhat of a challenge. However, in times when I need space, I simply remove myself from the crowds, the laughter, and frankly the happiness. That may sound strange, but I have learned that I need to do this on occasion for self-preservation purposes. Peter and I spent part of the afternoon outside on the balcony, looking at St. Thomas and watching people come aboard the ship for our 5:30pm sail away. In the midst of this calmness, I had a two hour argument with several Princess staff about the process of gaining access to the internet and their fees associated with this. Prior to Mattie’s illness if someone told me “NO,” or something “couldn’t be done.” I might have accepted it or perhaps argued a bit. But after my experience with Mattie, I don’t comprehend NO! By the time I finished with Princess today, I eventually got what I wanted. So even though Mattie is no longer physically around, he taught me well! None the less, I did not need this stress today and I assure you I let Princess know this as well.

The sail away from St. Thomas was quite beautiful. Peter and I snapped some pictures of this process, which I have included in tonight’s posting. We are now sailing to Dominica, where we will arrive tomorrow morning. Once again, thank you for reading Mattie’s blog, and for writing to me while I am away. I realize many people like to disconnect from electronic things when on vacation, but I freely admit that my blackberry has become a part of me since Mattie’s illness and death. The blackberry is a symbol of survival to me. It became my main connection to the outside world, and is my symbol of amazing social support. After all, within seconds of sending out a message on it, I can get instantaneous input, support, and caring. So with that said, how could I possible disengage from this now?

I end tonight’s posting with a message from my friend, Charlie. Charlie wrote, "Well, I am glad that so far the trip seems to be going well for you. Of course just because you are somewhere other than home doesn’t mean that you will be away from things that make you think of Mattie. Fortunately you have Peter and your parents to share these thoughts with along with those of us who are here supporting you electronically. Grief, like so many things, we carry with us no matter where we go. It will be your companion for a very long time but the key is not to feel guilty if you find you can occasionally escape it. It will be there waiting for you. I do love the picture of you and Mattie, nose to nose with wonderful smiles. It is the way that I always picture the two of you. As you visit different places and see lots of interesting things, acknowledge that Mattie was the kind of child who would have enjoyed these things with you and that he probably would have given you other perspectives of them as well. As you do that you honor his memory and the place he holds in your heart. I hold you gently in my thoughts."