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

April 6, 2013

Saturday, April 6, 2013

Saturday, April 6, 2013

Tonight's picture was taken in June of 2009. This was at the second party Mattie had to celebrate his seventh birthday. On the April 4th blog posting, I showed Mattie at his 7th birthday party in the child life playroom of the hospital. However, my friend Christine (Campbell's mom) was very thoughtful and generous to hold a birthday party for more of Mattie's friends at her house. The theme of this second party was clearly BUGS. In fact, James (Campbell's dad) dressed up as a roach and the cake was even ROACH shaped! But the creepiness was truly felt when Reptiles Alive (a company which hosts reptile parties for kids) came and the kids got to see snakes and a host of other things that made me scream. Mattie loved it and it was there that he met Sunshine, an albino boa constrictor. Mattie was fascinated by Sunshine, so much so, that his cancer buddy Jocelyn gave Mattie a stuffed animal version of Sunshine. Sunshine remains on  Mattie's bed today. Needless to say, this was a very special birthday party. I am so glad Mattie was able to celebrate his seventh birthday twice.

Quote of the day: You'd have thought that after suffering such a loss nothing else would matter to her but that didn't seem to be how it worked. She was fearful about everything now. It was as if she had finally seen the awful power of fate, its deviousness, the way it could wipe out in an instant the one thing you had been certain you could rely on, and now she was constantly looking over her shoulder, trying to work out where the next blow might fall. ~ Mary Lawson


Today was a glorious day by the Delaware seashore. It seemed timed perfectly with our departure home! Peter and I left Bethany at 11:30am and we were home by 2pm. It was a very uneventful drive home. Thankfully. Delaware is filled with farms! Farms for as far as the eye can see. While Peter was driving, I snapped several pictures. Here you can see soybeans growing. LOTS of soybeans actually. FOR MILES!

I had no idea what I was looking at but Peter told me this was a cattle farm with grain silos.












These long structures without windows are actually chicken coops. Traversing Delaware gave me an education for what life on a farm looks like.










I love these long metal sprinklers, which provide irrigation for the crops. Honestly we must have passed two dozen or more of these sprinklers today not to mention a ton of John Deere trackers and other pieces of equipment.







When we drove to the beach last week, the forsythia was not in bloom yet. But now a week later, the yellow flowers were simply glorious by the side of the road. As we drove into DC, we hit A LOT of traffic. Clearly we are NOT in Bethany any more. DC is packed with thousands of visitors to see the Cherry Blossoms. Typically the trees would have already bloomed by now, but with the unseasonably cold weather, the trees still haven't blossomed. Yet a ton of people were out and about in hopes for a chance glimpse at these beautiful pink sights. Needless to say we have exchanged sea birds and the ocean for traffic, airplane noise, and congestion. All sights that this "city mouse" is VERY used to.
 

April 5, 2013

Friday, April 5, 2013

Friday, April 5, 2013

Tonight's picture was taken on April 4, 2009. After Mattie's party in the Hospital's playroom, his two buddies, Charlotte and Abbie came back with him to his PICU room. The fun continued on Mattie's bed with balloons, jumping around, jokes, and even watching an episode or two of Scooby Doo. Visiting a hospital is challenging enough, but I can assure you visiting a PICU can be over the top. It is hard to see very sick children, some on ventilators, and others with no family or friends by their side. Yet Charlotte and Abbie came often to visit Mattie. I am sure they absorbed everything around them, yet that did not prevent them from engaging and playing with Mattie. That to me speaks to their courage but also the power of friendship.


Quote of the day: The house is eerily quiet. All this time I thought silence would be a welcome reprieve, but it's less comforting than I imagined. The house feels so much bigger and colder than it ever has. ~ Hannah Harrington



It has been an interesting weather week at the beach. Everything from rain, hail, and temperatures at night down in the 20s! YES the 20s. We were prepared for rain today, but by 11am, the glorious sun came out and eventually we lost that COLD wiping wind! We took a walk on the beach later this afternoon and Peter snapped some wonderful photos. It is so unusual to see shells on the beach, but with all the storms, it is a target rich environment. Collecting shells, like this Fan tail, remind me of Mattie.


In the morning, we went to the outlets. While shopping we talked to many of the store clerks. They were all complaining about the weather, the lack of visitors to the beach area, and their desire for spring to reach Delaware. I think this afternoon, we saw a potential glimpse of spring!




The waves today were huge. Like six to eight feet! They were totally impressive to watch and they made us stop in our tracks and watch them in awe.









Our friends live in a housing complex with about 30 to 40 houses. For the week we have been here there have been maybe three to four houses occupied in total. Today, however, there has been a flurry of move ins. I guess because the weather is predicted to be better this weekend. I love this cloud photo Peter snapped today.


There are MANY osprey flying all over the Delaware Shore skyline. This is NOT a bird I would ever see in DC. They are very impressive and have a huge wing span. They excel at nest building and capturing fish after diving into the water.




If you look carefully the resident Immature Common Eider was riding this wave. There were NO other birds on the shore today while we walked the beach for an hour. The only bird we saw on the water was this Eider. Got to love how he braves the cold water! Tomorrow, Peter and I head back to Washington, DC, and the sound and sights will be very different than Bethany.

I would like to end tonight's posting with a message I received from my friend and colleague, Nancy. It is a tribute to Mattie's 11 years!


11 Lessons Mattie Taught Us by Nancy Heller Moskowitz

I was going to write on Tuesday and then decided that I wanted to wait until Mattie's birthday. I have so much that I want to say, however, I will restrict my focus to Mattie and the lessons that he taught each and everyone of us. For me, having never met Mattie, in person, I am surprised by how much I know about him. Of course, that is because both of you have shared openly within the blog and our visits. Your view of parenthood and loving a child brought many memories of how I felt as a new Mom about each of my own children and now grandchildren. They are such an integral part of our day and being. Thanks for letting me share my thoughts on this Mattie's 11th birthday. May the day be one where all of our love keeps you safe as you weather another birthday without Mattie's presence. He lives on in all of us. Thank you for sharing him with us.
 
1st lesson - TENACITY - based on your recounting Mattie's early days, he was tenacious and wanted to keep everyone on their toes. He was "demanding" as only a newborn tends to be. The world revolves around them!

2nd lesson - HUMOR - Mattie enjoyed the "comedy" of life. Even while he was hurting and dying, there were many times that you told of funny things that he wanted to do or had done in healthier times. This is the value of pictures and memories, They keep us going when the source is not readily available. Humor is what keeps us young and alive. Like any 6 year old, he loved Sponge Bob Square Pants and Scooby Doo. Too very silly characters and he gave them character too. I remember one time when I was away and wanted to send Mattie something. I was in an airport shop and found a watercolor book filled with Sponge Bob. I don't know or want to know if he was ever able to use it. What was important is that I knew that it was a favorite diversion of his.

3rd lesson - LOVE OPENLY - Each picture shown with Peter or you screams how much Mattie loved his Mommy and Daddy. You both got him and not always in the same way. Peter spent so much time building Lego creations with Mattie, holding him on his shoulders, and teaching him and taking him to Red Sox events, along with Washington Nationals events. These are important, yet, what Peter gave Mattie, the most, was himself. That is what I love about Peter as a man. He is aware of what he needs and shows it. During his grieving, he has had to wear a mask so unless one really looks closely, his pain is not visible. I feel very honored that Peter has shown his tears along with sharing his own stories about Mattie. That is how Mattie learned to love openly. He was shown it!

Vicki, Mattie and you were "One" in many ways. He looked like you.
You shared a smile. You allowed him to be himself, very early on. I
learned that we will mimic our parents, once we are parents, or toss
away what we didn't like about our childhood. I imagine that you used
both in learning how to give Mattie your time and experience. He may
have been here for a brief time, however, he learned so much in that
time. He learned that he had a Mommy who would do anything for him and
did. You may have tired physically, Vicki, yet, you were always there,
no matter what. And then there was Patches, blessed Patches, who was
Mattie's constant companion. Mattie learned a lot from her too about
love.

4th lesson - BEING ADVENTUROUS - The stories and pictures showing Mattie on his many trips with you. He loved exploring. He incorporated his learning within his play. He collected memories of his escapades with you and your families. I picture his room, especially when he was alive, filled with the treasures of a trip surrounding him and wondering how he was going to keep everything forever. He didn't start out that way, I know. School and Margaret brought that out in him. The power of others was important to Mattie and he could amuse himself too. That is balance and so important.

5th lesson - ADAPTABILITY - You didn't show many pictures of Mattie walking with aides, however, the best memories here are of Speedy Red. Your parents found a way for him to get around, have fun, learn to drive and experience independence when he couldn't have it on his own. Being isolated in the hospital and how he used the cartons/boxes to illustrate his interests. His friendships, where he learned to share with others.

6th lesson - LOVE OF NATURE - especially BUGS - Only a boy comes to mind, although, many little girls do too. Did Zachary, Campbell, and Charlotte, engage in these antics too? Did you bird watch with Mattie or is this something that developed as a coping tool? I think that is why Mattie's tree, on the school grounds, is such a beautiful testament to him. It is meaningful because it continues to grow strong and tall. Each year, new symbols grace it to remind everyone of Mattie's life. Many people try to do "big" things that will leave their imprint on the world and your little boy did it just by being himself. That is very SPECIAL! And the Full Moon will never just be a moon phase, it will always be a Mattie Moon.

7th lesson - THE POWER OF MUSIC - I believe, I remember, that Mattie loved ABBA music. If I'm correct than Dancing Queen had to be one of his favorites. I remember you telling of music within the hospital and Mattie dancing with his medicine pole. He would have loved Mama Mia. Music gives us a way to express ourselves like nothing else. It involves sight, sound, and touch. It involves our sense of freedom within the world. It can take us places that we may never visit.

8th lesson - APPRECIATION - Mattie appreciated time and used it well. The stories of the nursing staff at Georgetown Hospital gave him a wealth for appreciating how important caring about others is to a strong presence. Here, I need to include Brandon. He taught Mattie to appreciate each day. Brandon gave Mattie, a mentor, of how to appreciate what one has at the moment and how precious it is to use it wisely.

9th lesson - FRIENDSHIP - Mattie's friends were very important to him, once he went to school. Kindergarten was such a wonderful experience for him. It brought Mattie to the world and the world to him. The way in which each of his playmates would just be with him, especially, in the hospital. I remember pictures of Charlotte sitting on his bed watching TV. The fact that so many of the children remember Mattie each year and share their lives with you shows how much he is a part of them. I believe that is what makes Lauren and the other child vendors of the Walk so important, they
represent friendship on a higher plane.

10th lesson - PUT ON A BRAVE FACE - Each day that Mattie had a procedure, a new drug, a "down day" where he wanted a part of no one or nothing, his daily pain and limitations, when you took out the camera, he tried and succeeded in giving us a smile. I know that this is purposeful for the blog and remember the time, close to the end, when he just couldn't smile, yet, his brave face was there. He attempted so much with all of you giving him courage and encouraging him to strive for what was important to him. He took his time on earth and made it count. He was a fighter. He was and is a winner!

11th lesson - CREATIVITY - Mattie's creations, documented by your photos, showed inspiration. He was an architect, a designer, a builder! What he did with Legos was masterful for his age. I know that Peter had a lot to do with this too, still, Mattie had to want to accomplish all of those buildings. In an age where technology rules, Mattie got the best instruction of how to use what resources he had and make them count. His "box" creations, his bug collections, all showed Mattie's creativity.
 

April 4, 2013

Thursday, April 4, 2013

Thursday, April 4, 2013 -- Mattie's 11th Birthday!!!

Tonight's picture was taken on April 4, 2009. That was Mattie's seventh birthday. This was Mattie's last birthday with us. Pictured with Mattie is Brandon, Mattie's big buddy. Mattie was hospitalized on his birthday but thanks to Linda (Mattie's child life specialist) and his friends, Mattie had a lovely birthday party in the playroom of the hospital. I learned today that Brandon became an uncle. His sister gave birth to a baby girl at around 5:30am today. Just another thing we share in common with Brandon and his family. April 4th is a day none of us will forget.


Quote of the day: I learned that in these disasters, all we can do is tell our 'in case of emergencies' that their grief is real, and if it lasts forever, then we will grieve with them forever. ~ Glennon Melton


I had actually selected a different quote for tonight's posting. But then I received this Melton quote from Jenny, Mattie's art therapist. Jenny's quote meant so much to me, that I replaced the one I originally selected with this one. In essence what this quote is saying is that I am an important friend, and if my grief lasts forever, then there are people who will be there grieving right along side me as well. There is nothing one can do for Peter and I in all reality, but I can say that it does help knowing people haven't forgotten, that they understand that time doesn't heal all wounds, and that they are willing to be on this forever journey with us. These are words of support that all grieving parents need to hear. They made a difference to me and I can assure you, we spent a good portion of the day depressed. Depression doesn't always look pretty and what contributes to this sadness is not only having lost Mattie to cancer and the notion of a future without him, but also the reality that we face this sadness alone more and more each year.


This afternoon my friend Tina visited Mattie's tree and decorated it. This act of kindness meant a lot to Peter and me. In a way, it was like Tina delivered a gift to Mattie in butterfly and bee form.





















I am sharing these two photos today on the blog because they remind us of Mattie. One is this huge oyster shell we found on the beach (it was frigid today -- no one was walking -- I was wearing a winter coat, scarf, and ear muffs). The second picture was taken at Burton's Island trail and what Mattie would have loved on this trail was all the pine cones. He would have collected dozens on our walk if he were with us.
 
I am ending tonight's posting with a message from my mom and then as promised a message I wrote to Mattie for his celebration of life ceremony (October 2009). This story of the day Mattie was born is something I shared with him often! For those of you who wrote, contributed to the Foundation, and reached out to us today...... A BIG THANK YOU!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

My Bittersweet Memories by Virginia R. Sardi

April 4 is a day associated with beautiful, momentous memories of the birth of dear Mattie who was bright, energetic and a vital force from the first moment he entered the world and our lives. Seven wonderful years were to follow and then suddenly he was taken away  before he ever had a chance to  realize his promise which I imagine would have been awesome.  That is the bitterest of pills to swallow.  We pause on this day to remember what has been and what could have been. 


~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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!

April 3, 2013

Wednesday, April 3, 2013

Wednesday, April 3, 2013

Tonight's picture was taken in April of 2008, during Mattie 6th birthday party. As you can see Mattie had a Scooby Doo cake (since he LOVED Scooby Doo) but his birthday theme was bowling. That year we invited all of Mattie's kindergarten class and some of his closest preschool buddies to a bowling alley. This was a party I will never forget. During the party Mattie began running an 101 fever and what I learned is it is a lot harder to contain children at a bowling alley than you may think! I remember after that party was over Mattie literally went home and passed out on the couch! Which was HIGHLY unusual for Mattie. He only did this when he was very sick! That was Mattie's last healthy birthday ever. Now looking back, perhaps the 101 degree fever was a sign, but in all honesty I would never have guessed my six year old would be diagnosed with cancer just three months after this picture was taken! 

Quote of the day: The worst pain ... isn't the pain you feel at the time, it's the pain you feel later on when there's nothing you can do about it. They say that time heals all wounds, but we never live long enough to test that theory ... ~ José Saramago


Each morning this week Peter and I have started the day by working together on Foundation items. We both have had think tank working group conference calls this week as well. In the past two days we have brainstormed a lot for May's upcoming walk. Since the format of the walk is different this year, in many ways it is like planning the event for the first time. Later in the day we drove to Cape Henlopen State Park and walked 3.5 miles on the Walking Dunes Trail and Salt Marsh Spur.


The sun was out but it was windy and blustery. Nonetheless, this is not the kind of trail one could easily walk during the summer months. It would be too hot, not to mention filled with ticks. This Marsh Trail was beautiful and went on for as far as the eye could see. This may look like a sandy trail, but it was actually crushed shells we were walking on!



From the trail photo above, we saw this Salt Marsh. It was very peaceful on the trail and we only passed about three people in total. In fact, Peter and I both commented that this whole trail LACKED wildlife of any kind. Even birds!








A close up of the marsh. Tomorrow would be Mattie's 11th birthday. It is my hope that you have enjoyed the last week of Mattie birthday photos I have posted on the blog. We remember each and every birthday, but it is hard to accept why such a vibrant force within our lives was taken away from us at age seven. This will be the fourth birthday of Mattie's we are acknowledging without having him physically present. It is a very confusing and at times upsetting prospect that in order to cherish our role as parents, we must live in the past. For the future holds NO Mattie!

 

April 2, 2013

Tuesday, April 2, 2013

Tuesday, April 2, 2013 --- Mattie died 186 weeks ago today.


Tonight's picture was taken in April of 2007, right before Mattie's fifth birthday party. Looking at Mattie's cake, you probably would imagine that Mattie had a Cars themed birthday party. But that was not what happened. Mattie's fifth birthday was held at the National Zoo. It was a very unique party because we were the ONLY ones at the Zoo. Why? Because it was torrential rain! Absolutely a horrific weather day. I would have cancelled the party, but the Zoo runs the party rain or shine. They weren't kidding! I thought the kids were going to have a miserable time, but in all actuality they had a blast. It was like an adventure through a jungle filled with rain and animals. The National Zoo is infamous for its animals hiding. We have been to the Zoo countless times and never saw many animals. But that day was different all the animals were out and enjoying the rain. Needless to say, it was a birthday party to remember but not one in which I was able to take many photos!


Quote of the day: Though surely to avoid attachments for fear of loss is to avoid life. ~  Lionel Shriver


I would say that going away on vacation is a challenging notion for Peter and me. There have been many times on this trip alone, where we have debated packing up and returning home. Sometimes you think that getting away will reduce the stress or enable one to put grief on hold. But it doesn't always work out that way. We took another walk on the beach today. It was far chillier than yesterday, but the sun was still out thankfully because there was a wiping wind. Peter captured the seagulls and plovers walking with us. We had the beach to ourselves today, except for the wonderful bird traffic.


As you can see there was sand and peace for as far as the eye could see. It is lovely to walk along the beach, look at the houses, collect shells, and hear the ocean waves.









Along our stroll we came across this oyster shell. That probably wouldn't mean much to anyone at first glance. But the shell reminds us of Mattie. One of the creations Mattie made in the oncology clinic was a huge character named Dr. Crazy Hair. This doctor (made out of wood) has a lab coat, a head with feathers for hair, and rubber gloves for hands. Dr. Crazy Hair is still in Mattie's bedroom at home and he is about 4 feet tall. The good doctor has a patient toe nail in his lab coat pocket! The toenail is actually an oyster shell, but honestly the shell and an infected toenail look a lot alike. So now whenever I see a funny looking oyster shell, I think of Dr. Crazy Hair and Mattie's sense of humor!

This afternoon I had a think tank working group conference call. The beauty of technology, you can be anywhere! After the call, my head was spinning. We regrouped and went out to dinner. Through the restaurant's window, this was the sight we saw.... an Osprey sitting on a nest!

 

April 1, 2013

Monday, April 1, 2013

Monday, April 1, 2013

Tonight's picture was taken in April of 2006, during Mattie's 4th birthday party. Mattie's theme that year was dinosaurs. Because Mattie loved nature trails and parks, we held his party at Riverbend Regional Park. The park naturalist who helped us host the party appreciated Mattie's desire for all things creepy. Kids got to get up close and personal with different types of snakes, turtles, and even a tarantula. The kids then got to go on a guided walk through a trail, which ended at a large sand box in which they got to dig for dinosaur bones (or in this case plastic dinosaurs!). 


Quote of the day: The days passed in a dream. I pictured our reunion again and again, played it out in my mind over and over until I’d almost worn a groove in my thoughts, so deep that it seemed the only thing I could think of was our reunion. Anticipation is a gift. Perhaps there is none greater. Anticipation is born of hope. Indeed it is hope’s finest expression. In hope’s loss, however, is the greatest despair. ~ Steven L. Peck


Peter and I got up today and literally FORCED ourselves off the couch and out of the house. Of course seeing the sun shining helped tremendously, since yesterday it looked like the end of the world at the beach with wind and rain. 


Our first steps back into reality was a walk on Bethany Beach. As you can see we had the beach mainly to ourselves. We occasionally ran across a fellow resident with furry companion in tow. 








The sun was glorious and shining onto the water. Despite having a persistent headache, I did find walking the beach very therapeutic. We did it twice today!










We can clearly see the damage and impact from Hurricane Sandy on the beach. Between the Hurricane and yesterday's storm there are SHELLS everywhere. I tried to snap a picture of all the shells. Usually when we visit Bethany I return home with one or two shells at the most. Today, I have a whole shopping bag full. 



Part of our pact to get out of the house meant having a plan for the day. I do not do well without a plan. I suppose I am not much different than a preschooler. I am not a spontaneous person and when I am in a mood with a violent headache, it is easy for me to spiral downward and totally retreat. Today we decided to visit Lewes, DE. I get a big kick out of this lighthouse replica every time we drive passed it. It welcomes visitors to Lewes.


Lewes is a tiny town, but worth the visit. It is filled with Victorian Painted Ladies, shops, and restaurants. But definitely small and quaint! 










One of the restaurants I love to go to in Lewes is The Buttery. It is situated in a Victorian house and it has a lovely wrap around porch which is enclosed in the cooler months. Peter snapped a photo of me. From my perspective, I look sick or weak. But at least I got out. 





The Buttery has a fireplace which is decorated each spring for Easter. It just screams out spring! 












This evening, we went back out to the beach after a rain storm. Peter immediately spotted this rainbow!












I was fascinated by this big bird which kept diving into the water. He worked alone and clearly wasn't bothered by the cold temperature of the water. We did some investigation and found out that this fellow is an Immature Common Eider! 



At first, I did not see my favorite beach birds. But as we spent some time walking a pack of them came flying in. I love Plovers! I particularly love how they move their little legs to avoid getting wet by each wave that comes in. They are a sight to watch!






The clouds have set back in along the coast tonight. However, there was ONE pocket of blueness. The sun desperately tried to shine through and its beams came miraculously through onto the water. It seems rather symbolic of how my head feels and my depressed mood. It feels as if my world is covered and surrounded by grayness and it takes great strength to look for that ray of sunshine to help pull us through. 

March 31, 2013

Sunday, March 31, 2013

Sunday, March 31, 2013

Tonight's photo was taken in April of 2005, as we celebrated Mattie's third birthday. The theme of Mattie's third birthday was Blue's Clues! Mattie loved the TV show, Blue's Clues. For this birthday, I hired a student I met at the George Washington University. This fellow was a wonderful kid's magician and also traveled with his own pet bunny named Hobbes. Hobbes was a major hit of the party and all the kids got to hold and pet the bunny. In addition, I created a Blue's Clues game with the kids, so literally they all had notebooks, they had to find three clues around our home, and then guess what "Blue" was thinking. The whole party was very active and Mattie had a wonderful time.

Quote of the day: And I think that in myself (and perhaps evident in what I write) fear of loss and the corresponding instinct to protect myself against loss are potent forces. ~  Richard Ford



Today may have been Easter, but for Peter and I, it was an absolutely lost day. I can't shake the horrific headache that I have, and Peter is dealing with a fever and nausea. On top of feeling rotten, it was cold, rainy, and damp today. So there was no time outdoors to capture fresh air.
 
The sad part about all of this is each year at this time we both get sick. The feeling seems depressing and just makes us seem further disconnected from reality. Holidays are family times and they only serve to further remind us who is missing from our lives, and that our lives will never be the same.
 
My friend Denise sent me the following quote by Julia Cameron this week.....................
 
Our bodies are storytellers. We store memories in our bodies. We store passion and heartache. We store joy, moments of transcendent peace. If we are to access these, if we are to move into them and through them, we must enter our bodies to do so. When we encounter an emotional shock, the trauma of a lost beloved, the grief of separation, our bodies count the cost. Our minds may go numb, adroit at denial, but our bodies hold fast to the truth.
 
This quote resonates with me, because it isn't just a theory for me. I see it operationalized within my own life. The loss of Mattie is trapped within our bodies. Even if we want to deny this reality, our bodies tell us otherwise. I am signing off for today, but it is my hope that our readers who celebrate Easter, had a lovely day with your friends and family. I realize holidays can be challenging days for all of us, but if you have a healthy child in your life, in many ways you have been granted a blessed day.