Monday, November 5, 2012

Monday, November 5, 2012


Tonight's picture was taken in October of 2008. I know that this photo must have been taken on a Friday, given the activity we were doing. We were out in the Pediatric Unit hallway enjoying an experiment hosted by the Georgetown University Chemistry Club. I was kneeling between Mattie and Brandon (Mattie's big buddy). The other person in the picture holding the blue container of dry ice was Chris. Chris was the Chemistry Club president and really tried hard to engage Mattie during his visits. That day, Chris gave each of us a red rose. You can see Mattie holding his rose, while I am dipping my rose into the dry ice. Literally after a few seconds in dry ice, this rose became a popsicle. Once I pulled the rose out of the dry ice, Chris directed me to throw it on the floor. The rose shattered in hundreds of pieces, not unlike a piece of glass. When I looked at this photo tonight, it jogged my memory. Mattie loved the rose so much, that he refused to dip it in dry ice. He wanted to hold it and take it back to his room. Keep in mind that flowers and plants are not allowed in a PICU. But having the opportunity to hold something living was special to Mattie. He may not have verbally expressed it, but in essence that was what he was saying by refusing to use his rose in the experiment.


Quote of the day: Unexpected kindness is the most powerful, least costly, and most underrated agent of human change. Kindness that catches us by surprise brings out the best in our natures. ~ Bob Kerrey



I think there is a lot to be said for unexpected kindness. Kindness that is given without a motive or expectation for something in return. We see glimmers of this type of kindness around us on a daily basis, but I am not sure we acknowledge it. Or accept it for how beautiful it is. Last night I received an email from my friend Karen, who lives in NY. Karen is a NYC high school math teacher, not unlike my mother. In fact, if you ask Karen why she became a teacher, she will say she was inspired by my mom. My mom was an outstanding math teacher, she challenged her students, and many of them went on to college and to accomplish great things.

We live in a screwed up society where teachers are taken for granted and are not compensated appropriately for the jobs that they do daily. Many of Karen's students have been greatly impacted by Hurricane Sandy. Her stories are horrible and depressing, because children this age should not be worried about clothes, food, and where they will live next. Forget how they will get to school or even if they will attend school, right now they are dealing with the most basic of needs..... safety and food. Karen could have spent the day yesterday at home preparing for school to start today. After all, school has been out for a week because of the storm's devastation. But instead, she went to different clothing stores and other establishments around town asking for item donations to give to her students today. The school did not ask her to do this and clearly she would receive no compensation for doing this. Her actions to me speak to unexpected kindness, and I have no doubt that providing these surprises to her students brought out the best in both of them. I know from personal experience that the educators who had the most impact on my life were those who went beyond their lesson plans in the classroom. Teaching and transforming young lives requires a personal investment, and I can't think of a better way for students to know that their teacher cares about them than by receiving needed items at a time of crisis.

As for myself, I had several different lows today. However, in the midst of this, I received an email from a friend inviting me to a party, and also letting me know that a portion of the proceeds from the jewelry that would be sold at this party would go to Mattie Miracle. This was a complete surprise to me, an unexpected kindness. To me these unexpected kindnesses are what makes life special, what makes us feel human and connected, and on difficult days, an unexpected kindness can help change one's entire perspective. May we all be the recipients of unexpected kindness as well as feel the joy of giving this surprise to someone else.  

Sunday, November 4, 2012

Sunday, November 4, 2012

Tonight's picture was taken on October 20, 2008. The picture was taken at 6:45am, an ungodly hour of the morning, as Mattie was being prepped for his first limb salvaging surgery. Why on earth we were all smiling is beyond my comprehension. Other than one is just conditioned to smile for a camera. Nonetheless, I felt documentation was important and I took pictures with the thinking that Mattie would look back on his treatment days and say... wow I did this? Those days never came. But in all reality on October 20th, we were stressed out and beyond scared of what the next several hours held for Mattie. Peter was allowed to walk into the operating room with Mattie so Mattie wouldn't be alone until he was sedated. Only one of us was allowed to do this, so I was happy Peter handled that aspect of the day. Keep in mind what this day held for Mattie and us.... We wheeled Mattie from the PICU to the pre-op area of the Hospital at 6:45am. At 8am the surgery began. Mattie's surgery did not end until 4pm. At 4pm, Mattie was transferred to the PACU (Post Anesthesia Care Unit), where he spent the next four hours recovering. Mattie did not return to his PICU room until 8pm. Keep in mind that returning the PICU did not mean he was in great shape. Mattie had intense pain. In fact Mattie's first two surgeries had a mismanaged pain plan, but by the third surgery, we addressed that problem with enough screaming. So in total we are talking about a 14 hour day for Mattie, and unfortunately that was only one of three surgeries he underwent. It is no surprise given all that Mattie endured, the mental health impact on him and us was significant.
 

Quote of the day: Happy people plan actions, they don't plan results. ~ Dennis Wholey

As promised, I took a lot of pictures of our Saturday away at Cape May. Peter and I are back in DC now. I would like to share our trip with you through pictures. However,  one thing I quickly learned is that Cape May is not around the corner, it took us three and a half hours to drive there, and 90 minutes of which are on one lane back roads.

On our drive to Cape May, we saw this in the distance. A huge cow statue. In Pilesgrove, NJ, is located COWTOWN RODEO.  Being a cow affectionato, this whole venue caught my attention!

Cowtown Rodeo was started in 1929 by Howard Harris Sr. and his son, Howard "Stoney" Harris Jr. Stoney held the first rodeo in Woodstown NJ, in conjunction with the Salem County Fair, at the original auction grounds on North Main Street. Presently this ground is known as Harris Acres, with the back stretch of the race track now being the Presbyterian Church on Auburn Road. The rodeo was held annually during the County Fair until 1937. World War II caused the rodeo to be put on hold until 1955 when Howard Harris III, Stoney's son, came back from the University of Idaho carrying the 1954 National Intercollegiate All Around Rodeo Championship saddle with him. Howard and Stoney worked together in establishing what is now known as the "oldest weekly rodeo in the United States." Cowtown Rodeo was, and is, known nationwide due to live national TV exposure in 1957 and 1958 and taped exposure nationwide in 1968 and 1969. The rodeo outgrew the original arena and in 1967 Howard built the present arena with a seating capacity of 4000.

As we were driving on the NJ Garden State Parkway, two things caught our attention. First were the clouds with sunlight trying to stream through them. This looked very ethereal. The second thing was the sign. Can you read it? It says, "Fuel restriction north of exit 91, ODD Lic Plates Only." This sign immediately lets drivers know of the devastation from Hurricane Sandy just north of us. On Saturday, only license plates with odd numbers were able to get gas north of where we were.

 

Entering into Cape May
Cape May is a city at the southern tip of Cape May Peninsula in Cape May County, New Jersey, where the Delaware Bay meets the Atlantic Ocean. One of the country's oldest vacation resort destinations. With a rich history, award-winning beaches, designation as a top birdwatching location, and many examples of Victorian architecture, Cape May is a seaside resort drawing visitors from around the world. Cape May was recognized as one of America's top 10 beaches by the Travel Channel and its beach was ranked fifth in New Jersey in the 2008 Top 10 Beaches Contest.

 

Peter snapped a picture of me before we headed to the wedding reception. The wedding was in Sea Isle City, NJ, and our hotel was in Cape May. The church and the reception were about 35-40 minutes away from Cape May.

 

 

I tried to take a picture of Larry and Michele. However, I wasn't at the best of angles. They were married at St. Joseph's Catholic Church, and this picture was during the exchange of vows. I believe it is natural for weddings to remind married couples of their own wedding. It isn't unusual in a Catholic wedding to hear about the wishes for a couple to have children and to bring them up in the Catholic religion. I remember hearing this at my own wedding. Of course at the time that seemed like a wonderful and happy wish for our future. However, I have seen the future, a future most married couples will never know or see fortunately. That of a child dying before them. So hearing about this dialogue of children just made me sad. Actually hearing about weddings and the birth of children make me very sad in general. This may not be understandable to my readers, since these are considered happy and blessed occasions. But for me, these occasions are symbolic of very different things. So needless to say, I am not the best company at happy events and occasions.

 

Larry and Michele's reception was held in Avalon, NJ. This was one of the views I captured from the yacht club. Unlike Cape May, Avalon was hit a bit more by Hurricane Sandy. As we drove through Avalon, we could see piles of garbage, furniture, and rugs outside of almost every house. Indicative of the damage inside.

 

This morning when we woke up and opened our curtains, this was the view we saw. When I checked into our hotel yesterday, the person at the desk, who I swear reminded me of an under taker, gave me a free room upgrade. He gave me a room with a wonderful view of the Atlantic. The sun desperately tried to burst through the grayness all around us. Despite the gray and cold weather (it was in the 40s on the Cape), seeing the water and sea birds were wonderful.  

 

Cape May looked a lot different before the fire of 1878. The town is the oldest seashore resort in the nation. In the 1800's, Cape May had quite a collection of classically designed seaside hotels. The fire of 1878 wiped out 30 blocks of the early seashore town, including some of the resort's major hotels. In the next several photos I will share some history of the Cape's architecture, along with a photo of one of the many beautiful homes. This house is called Cape S Cape. A play on words.... for Cape Escape.

 

To this day, when someone in Cape May talks about "the fire" they're referring to this major event more than a hundred years ago. The town wasted no time rebuilding. For the most part, the new buildings that went up were built in the modern style of the day...later known as the Victorian style... lots of gingerbread trim, gables and turrets. This Blue Lady caught my attention as we took a walking tour of the town.

 

The fire explains the huge concentration of late 19th Century dwellings in Cape May today...everything from Gothic Revival to Queen Anne design...all part of the country's Victorian era. This is the Hotel Macomber which was built at the turn of the century and was the last Historic Landmark building erected in Cape May.

 

The homes were mostly single family seashore homes. They're often called "painted ladies" because of their colorful appearance. But those beautiful Victorian homes faced a new threat a hundred years later...just as serious as the fire of 1878.
It was the push to demolish the old, to make way for brand new construction in the last half of the 20th Century that almost did more damage than the fire of 1878. In the fall of 1894, William H. Church, a contractor and builder, of West Cape May, began work on a 60-room boarding house at the foot of Ocean Street opposite the Star Villas, one of the most delightful locations on the beachfront. The structure was to be four stories high with a French roof and roomy porches from which there would always be an unobstructed view. The house was to be fitted throughout with steam heat in order to remain open all year. Gas lights were installed and an electric ball system. Special family rates were offered. One hundred thirty-five guests could be accommodated. It was to be known as the Colonial and to be operated by the builder himself. Today this is what the Colonial looks like and it had a name change to the Inn at Cape May.

 

Many fine old buildings were lost in the new building blitz before the entire town was listed as a National Historic Landmark in 1976. But once they were saved from demolition, the question was how were they going to be maintained. Few modern day families could maintain an eight or ten bedroom house, with high ceilings, formal parlors, and often maids' quarters. There are so many houses to choose from, but this Yellow Lady deserved a photo.

 

Slowly, many of Cape May's huge Victorian seaside "cottages" have been turned into bed and breakfast inns, guest houses and even restaurants. They could no longer be maintained as private houses! Check out this Pink Lady! 

Congress Hall

For almost two centuries the hotel has offered hospitality to locals and visitors alike. It began life in 1816 as a simple boarding house for summer visitors to one of America's earliest seaside resorts. Its owner, Thomas H. Hughes, called his new boarding house "The Big House." The local people had other ideas, though. Convinced the building was far too large to ever be a success they nicknamed it "Tommy's Folly." In this first incarnation it was a quite different affair. Downstairs was a single room that served as the dining room for all the guests, who stayed in simply partitioned quarters on the two upper floors. The walls and woodwork were bare and supplies of provisions were at times unreliable. Guests were undeterred by the Spartan conditions and summer after summer the new hotel was packed to bursting. In 1828, Hughes had been elected to Congress and in honor of his new status his hotel was renamed Congress Hall. As Congress Hall's reputation grew, so did Cape May's. By the middle of the 19th Century Cape May had become a booming holiday destination, rivaling Saratoga and Newport for popularity. Congress Hall had doubled in size and was welcoming guests from around the region, but in 1878 the building was destroyed when a huge fire swept through 38 acres of Cape May's seafront. Within a year, the owners rebuilt the hotel, this time in brick rather than wood, and business blossomed once again. The hotel and Cape May proved so popular that they gained renown as a summer retreat for the nation's presidents. Ulysses S. Grant, Franklin Pierce, and James Buchanan all chose to vacation here. President Benjamin Harrison made Congress Hall his "summer White House" and conducted the affairs of state from the hotel.

 

Peter and I had breakfast at Congress Hall! I am enamored by historic hotels and from my perspective it was worth a wait in the Hotel's library to get a seat into the Blue Pig Tavern (the restaurant inside of Congress Hall).

 

Congress Hall, in my opinion, is one of the loveliest hotels in Cape May. Its old world charm and elegance, reminds you of a by gone era. The hotel, unlike others, is very well maintained. The Blue Pig Tavern serves locally grown food, the setting is very charming with a wonderful wood burning fire setting the room aglow, and the china used today reflects the same hollowware pattern manufactured by the Buffalo Pottery Company from the late 18th century.

 

The Hotel has charming gardens and views of the Atlantic Ocean. You can see the rocking chairs lined up outside Congress Hall for visitors to enjoy their surroundings during warmer weather.

 

After breakfast, we walked through the town's main shopping "mall." There were pumpkins, gourds, Indian Corn, and mums all over to celebrate Fall.

A Pretty Lady on Ocean Street

My name sake! The Queen Victoria Bed and Breakfast.

To me this is a Hot Pink Cutie!

My last photo is that of the Chalfonte Hotel. This historic Hotel was established in 1876. It is recognized as the oldest continuously operating hotel in Cape May, America's Original Seaside Resort.
 

Saturday, November 3, 2012

Saturday, November 3, 2012

Tonight's picture was taken in October of 2008. As you can see Mattie was holding a remote control for the car on the floor with his left hand. He was doing this because his right arm was healing from limb salvaging surgery. That day a friend brought Mattie a stuffed animal of a Jack Russell Terrier (which looked a lot like JJ, our resident Jack Russell in our complex). Mattie had the stuffed animal taking a ride on the car. However, if you knew Mattie well, then you also knew that his play wasn't confined to his room. He would have remote controlled cars trailing down the hallways of the PICU greeting nurses. Which brought some humor to a very frenetic and serious place. Featured with Mattie in this photo are Whitney and Lesley (the dynamic duo child life interns!). These two ladies not only cheered up Mattie, but seeing them was like a ray of sunshine for all of us. I also noticed in this photo that Mattie's feet were bandaged up. Mattie did not hurt his feet, but there were times due to treatment that his skin would bother him intensely. Sometimes his skin would itch or burn, and we found one way to help Mattie feel more protected was to wrap the particular body part up in gauze. I am not sure if it technically made a difference, but to him it mattered, and that was all that counted.

Quote of the day: Speak from the heart and the truth will be shown. ~ Jean Paul-Alice


It is 7am on a Saturday and Peter and I are up and mobilizing. We were invited to a wedding today in Cape May, NJ. At first, given all the reports of the aftermath of Hurricane Sandy, we weren't sure this wedding would take place, but we have been told that Cape May wasn't hit as badly as other seaside communities in New Jersey.

Naturally I am going with my camera and the evidence of my observations will speak for itself. We return to DC tomorrow, and therefore on Sunday's blog I will report about our trip and the wedding we attending. The person getting married was one of Mattie's kindergarten teachers. Larry understood and appreciated Mattie, and he is still very involved in our Foundation today. So we share a Mattie connection and we know that Mattie will be with us in spirit today.

Typically I like to write the blog on site and report about the happenings of the day. So leaving the blog behind is a change of pace for me and a FIRST. Thanks for checking in with us and stay tuned for a Cape May update tomorrow.

Friday, November 2, 2012

Friday, November 2, 2012 -- Happy 3rd Birthday Mattie Miracle! ---

Tonight's picture was taken in October of 2007. The Halloween before Mattie was diagnosed with cancer. It seemed appropriate that I selected this photo tonight since this is our face of Mattie Miracle. I snapped this picture of Mattie in a pumpkin patch of Butler's Orchard. This Orchard was one of our favorite Fall Festival locations in the area! Mattie had just picked this pumpkin off of its vine and the whole color ensemble spoke to me. Five years later this picture still speaks to me, it captured a happy family outing on a beautiful October day.


Quote of the day: A successful man is one who can lay a firm foundation with the bricks others have thrown at him. ~ David Brinkley

Though our Foundation has a Facebook page, I am not the one who maintains or checks it. Which is ironic, since clearly I am into electronic communications. I write a blog each day, which speaks to hundreds of people daily, and yet Facebook hasn't caught on with me. I think there are many reasons for this. Nonetheless, it is thanks to Facebook, that Peter and I were oriented to the significance of today's date. This morning the Foundation's Facebook page received many postings wishing us a "Happy Birthday." We appreciate all of these good wishes.

It is indeed true, on November 2nd of 2009, only two months after Mattie's death, the Mattie Miracle Cancer Foundation was incorporated into the state of Virginia. Most non-profits do not get incorporated that quickly, but thanks to the help of instrumental members of Team Mattie, this became a reality.

Somehow there is something symbolic with the fact that our Foundation's birthday falls on All Souls' Day. All Souls’ Day is a day of prayer for deceased souls. Many Christians visit cemeteries where their loved ones are buried on this day. I do think it is interesting to note that this festival or day started from a belief that the deceased ones who have not ascended to heaven come back to have meal with their family on November 2 every year. Naturally this notion has evolved over time, and now it is considered a day of remembrance. Yet I do find it interesting, and beyond coincidence, that my mom wrote to me yesterday with a vivid dream she had in which Mattie was with her and holding her hand. That was on November 1st, All Saints Day, and last night I had a dream in which Mattie was healthy and we were at a beach house where he was playing with his friends. Two vivid dreams in two days (on two very meaningful spiritual days in the Catholic religion)! As I told my mom, she was visited by Mattie, and I suppose I need to give myself the same advice.

Being that it is the Foundation's birthday, it seems appropriate to acknowledge that in three short years the Foundation has accomplished many, many things!!! The top 20 are......

1. We have contributed over $50,000 to Georgetown University Hospital, and have endowed the Mattie Miracle Child Life Program Fund at the Hospital.
2. We have helped to create a Child Life Specialist position at Georgetown University Hospital (two years in a row).
3. We fund an on-going pediatric nurse support group at Georgetown University Hospital.
4. We fund and supply a Free Snack Cart for in-patient pediatric families caring for their children at Georgetown University Hospital.
5. We helped to create HR 262 -- introduced in the House on May 13, 2011 by Rep. Chris Van Hollen (D-MD). Raises awareness,  improves education, and enhances research and treatment for the psychosocial needs of children with cancer and their families.
6. We helped to get H.R. 3015 introduced in the House on September 22, 2011. Added language to improve and enhance research and programs on childhood cancer survivorship, and for other purposes.
7. We helped to get S. 1613 introduced in the Senate on September 22, 2011. We included language in the bill to improve and enhance research and programs on childhood cancer survivorship, and for other purposes.
8. We have hosted an Annual Mattie Miracle Cancer Awareness Walk in Alexandria, Virginia three years in a row!
9. We are on Facebook, Twitter, and LinkedIn. 
10. We have hosted joint events with Girl Scout Troop 3989 at Georgetown University Hospital.
11. We produce monthly newsletters, a daily blog, have a website, and have been interviewed for articles in The Washington Post, and appeared on Fox 5 News.
12. Served as the Community Based Learning Project for both an undergraduate and MBA course at The Georgetown University McDonough Business School (Fall 2011 and Spring 2012).
13. Testify before physicians annually at medical ground rounds regarding the impact of cancer on a child and the family.
14. Hosted a 5% sales day at Whole Foods in January of 2012.
15. With the help of Girl Scout Troop 3989, the Foundation delivered 100 teddy bears to Georgetown University Hospital.
16. Held the first childhood cancer psychosocial symposium on Capitol Hill in March of 2012.
17. Coordinated the 2nd Annual Post-Halloween Candy drive to stock the snack cart at Georgetown Hospital.
18. Have an upcoming presentation at Chicago School of Professional Psychology on November 7, 2012.
19. We are invited speakers at Palliative Care Conference held at The Hospital for Sick Children.
20. We will be hosting the first childhood cancer psychosocial standards of care think tank in February of 2013.

As David Brinkley's quote aptly points out about success..... success is what you do with the bricks that are thrown at you. In our case, Mattie's death was quite a large brick, a brick we are still figuring out what to do with. Yet this morning's Facebook greetings reminded me that with this large emotional brick, we have without a doubt built something in three year's time.

 

Happy Birthday Mattie Miracle!

 

Thursday, November 1, 2012

Thursday, November 1, 2012

Tonight's picture was taken in October of 2008. At that point, Mattie had already undergone two months of chemotherapy and one limb salvaging surgery. With SO much more to go! Next to Mattie was his "Haunted Mansion" that he designed while at home. It was made out of tinker toys and cut outs he created with help. Notice the spider hanging from this structure. Over time, more and more was added to this, such as lights and other creatures. Cancer left Mattie very sedentary, which was a hardship for a very active imagination. Yet, Mattie compensated by creating! During his battle with cancer, Mattie was most prolific using all sorts of media (clay, chalk, Legos, cardboard boxes, paint, tape, paper, etc....). As I look at this photo I also notice all the items around Mattie. With Mattie's cancer battle things began to pile up all around our home. In fact, after Mattie died, our home looked more unlivable than livable. It took me years to dig out from this accumulation, an accumulation that had great emotional ties.


Quote of the day: There is no greater loan than a sympathetic ear. ~ Frank Tyger


The power of a sympathetic ear, as tonight's quote points out, is indeed a powerful gift. I began my day by going to my zumba class. The majority of the women in the class are moms and naturally a mom thing to do the day after Halloween is to share stories and photos their children with one another. If Mattie were alive, I most likely would have been right in the mix. However while this chatting was going on, I was talking with my friend Heidi who wanted to know how yesterday was for me. Some times I am more vulnerable than others, and this morning I began to tear up over the situation. Not over the question. I appreciated the question and the concern, and also the fact that Heidi recognized that holidays are challenging for us. I have learned the hard way when helping someone who is grieving, that there really are no magic words or actions that will take away the hurt or the pain. With that said I must say that it helps when someone makes you feel valued and cares enough about you to ask how you are and actually wants to hear the real response. To me a sympathetic ear is a priceless gift to receive. After all it costs time and one's energy, both of which are not replaceable.

After class, Heidi and I teamed up and began driving to different houses around town to pick up Halloween candy for the Mattie Miracle Cancer Foundation drive. People have been responding to a listserv message Heidi posted and I am more than happy to collect the candy from all over. There are so many wonderful groups helping us collect candy this year, too many to even keep track of, but I will try as candy comes in to us. At the moment I know there is a brownie troop, a girl scout troop, a temple community in Maryland, a church and school in DC, a mom's group in Northern Virginia, and many of our devoted friends and members of the Team Mattie community.

It is funny, I rarely go on Facebook, however tonight Peter showed me a Facebook posting about our candy drive. One person responded to the drive with a great deal of questions and concerns because she thought we were giving the candy to childhood cancer patients. The intention of our candy drive is that we collect treats for the families who are stuck within the hospital caring for their children. I assure you while caring for a sick child the last thing you want to eat is nutritious food. It just won't go down and you need the energy from sugary products to help you through some very difficult moments. The candy and chocolates people contribute toward our drive are true treats for these families and these items are not only appreciated but families anxiously await for the arrival of the snack cart on the hospital floor to receive them. Many of these families can't leave the floor for such snacks while caring for their children, so the fact that these treats come to these individuals and are offered for free makes families feel cared about. The snack cart meets the psychosocial needs of families at the most basic of levels.

Later in the day I had the opportunity to meet my friend Alison. Alison was an instrumental leader of Team Mattie, and during that 14 month battle we met often to talk about Mattie and a whole host of emotional thoughts and feelings I had regarding Mattie's treatment and then pending death. Such conversations do not typically occur between friends, and yet we had them, and on occasion still have them. Mattie's cancer and death are surreal for me, and for those intimately involved in caring for us, I am sure on some level this is surreal for them. One of the things Alison shared with me today and that she wanted me to know was that Mattie's memory lives on within many of his friends. I am not sure why I have a hard time accepting that, but I do. There are many things I admit to having a hard time seeing which is why I appreciate it when trusted friends share their insights with me. Today was a day I saw first hand the beauty of being surrounded by sympathetic ears.

Wednesday, October 31, 2012

Wednesday, October 31, 2012

Tonight's picture was taken in October of 2008, Mattie's last Halloween. Mattie celebrated Halloween in two places that year. One was at the Hospital. In this Hospital picture you can see featured with Mattie was a human pumpkin. Better known as Mattie's big buddy Brandon. Mattie accepted Brandon into his life and truly gravitated to him at the Hospital. Mattie felt that Brandon understood him and that he could trust him. As Mattie told Toni (Brandon's mom), "Brandon is my best friend." The second way Mattie celebrated Halloween in 2008, was he went trick or treating with his preschool buddy Zachary. That was a night I will never forget. Mattie joined Zachary at his house, and the boys went trick or treating with a few other kids from Zachary's neighborhood. Because Mattie was recovering from limb salvaging surgery, he moved slower and was very cautious about his arm. So while the other kids were running down the sidewalks from house to house to obtain candy, Mattie was unable to do this. As a result he was getting frustrated and felt very different. He landed up walking with me for part of the night. It was obvious to me that Zachary's friends were pressuring him to join them and dump Mattie, however, Zachary confronted the issue and told his friends to go on without him because he was staying with Mattie. It was a mature and very beautiful decision made by a six year old. A decision I will never forget.


Quote of the day: Once in a young lifetime one should be allowed to have as much sweetness as one can possibly want and hold. ~ Judith Olney
 
In light of the fact that today is Halloween, I thought tonight's quote was appropriate. Clearly my readers who appreciate my addiction to sweets know just how special a piece of chocolate is and how it can improve even the worst of moods. I know today is October 31, but it just doesn't feel like Halloween. Part of it is me and the other part is knowing that people are attempting to recover from Hurricane Sandy. I realize so many in New York and New Jersey are living in havoc and therefore children there are unable to celebrate the day.

I spent most of the day working and then later in the afternoon, I met up with Peter and together we traveled to a polling center in DC and voted. We have never been able to vote early in DC before, this year is a first! But we definitely know the chaos of election day and the long lines that can take hours to process through. So voting early was the WAY TO GO! In 20 minutes I voted and got to scan my own ballot into the machine and I even watched it being counted.

I decided to spend the evening with my friend Mary, who lives in an assisted living facility. While chatting with Mary tonight I reflected with her on Halloween of 2009. That was my first Halloween without Mattie, and Mary had just lost her husband. That year, Mary and I were both at Ann's house and together we gave out candy to children in the neighborhood who stopped by to trick or treat. It is hard to believe this picture was taken only three years ago. Back then I was numb and Mary was more alert and talking. In essence we were both capable of celebrating Halloween in 2009. This year, neither Mary nor I are celebrating Halloween. Certainly for different reasons! When Mary saw me today, she wanted me to know that she considers me a "brave girl." I asked her why and the response was not understandable, but I can use my imagination and fill in the blanks with Mary. We spent several hours together tonight, and I truly believe my role with Mary is that of a sounding board, a companion, and emotional support. It is a lot easier to serve in this capacity because we are not related. I am not responsible for Mary's overall care and those demanding logistics, therefore it frees me up to be able to focus on the social and emotional aspects of Mary's life. Mary enjoyed eating the butternut squash that I baked this weekend and she appreciated me bringing it to her. As I was getting ready to leave, she stopped me to let me know that tonight she was "cared for by an angel." A line that always gets me to smile. Mary's kind words and compassion go a long way for me, because she has no real incentive to tell me these things. She just naturally feels this way and therefore I consider her words gifts.

 

Where Peter and I live in DC, we never get trick or treaters. It just doesn't happen. I don't know if this is a good thing or a bad thing. But a part of me wants to see children and participate in the holiday and the other part of me feels I am not entitled to. A conflict that lives inside of me each day, but it gets heightened on holidays and special occasions.  

 

Tuesday, October 30, 2012

Tuesday, October 30, 2012 -- Mattie died 164 weeks ago today.


Tonight's picture was taken in October of 2008, Mattie's last Halloween. By that particular point in treatment, Mattie already had undergone one limb salvaging surgery of his right arm. Mattie was very sensitive about this disability, and therefore picking a Halloween costume out that year was challenging. Fortunately Mattie's art therapists (Jenny and Jessie) and Linda (Mattie's Child Life Specialist) allowed him into the clinic to select a costume without having other children around him. That was a brilliant decision on their part because Mattie would have absolutely shut down if he had to struggle to pick out a costume among mobile children. Mattie gravitated to this mummy costume as soon as he saw it. He tried it on and absolutely loved the fact that you couldn't tell that his right arm was wrapped up and recovering. Instead it just looked like his arm was part of the costume. In this photo, Mattie was celebrating Halloween at the Hospital. Georgetown takes Halloween seriously, and literally the children can walk around administrative offices and collect candy while on a parade! I wish I could say Mattie had a good time that day, but he did not. So much of Mattie's treatment impacted his psychological well-being and therefore ours. When Mattie was miserable, we were miserable, and it was deeply painful to see a child that young so emotionally devastated.


Quote of the day: The way we communicate with others and with ourselves ultimately determines the quality of our lives. ~ Anthony Robbins


Peter and I managed through Hurricane, or was it a Super storm, or better yet  post-tropical Cyclone Sandy! Whatever Sandy was, I did not LIKE her. I heard winds and our windows rattling like never before. At one point, Peter opened our front door and he had me listen to the sound of the wind. It sounded like a train flying by us on the tracks. Fortunately we received no damage and we never lost power. I realize so many others are unable to say this and they are certainly in my thoughts.

We spent part of the day cleaning up plant debris, putting back our plants, and getting the deck ready to put up our bird feeders. It was absolutely hysterical today! While I was out cleaning up, I was surrounded by birds. It was as if something snapped in the weather and they were signaling me it was time to get the feeders out. These birds haven't visited our deck ALL spring and summer long. Now they are back and headed right for the hooks where I hang the feeders. From inside the kitchen, we snapped a picture of a Starling that came to visit. I did not have seed out yet, so we put out some bread (you can see the bread cubed by the mums). My packs of sparrows and finches are motivating me to buy seed this week. In the mean time, I literally entitled this photo..... "Hey, where is the bird feeder?"

I took a picture of these trees in our living room. We moved them into our home yesterday because they were blowing away in the wind. My friends Christine and Ellen gave me these plants when Mattie died. They both know I love plants and also knew that I gave up a good deal of my plants when Mattie was diagnosed with cancer (all plants with soil needed to be removed from our home because of Mattie's immunity). When Christine and Ellen gave me these plants they were tiny. They couldn't have been more than 12 inches tall at most. Now look at them! They are over five feet tall! They are happy plants.... one is a Rubber Fig and the other is a Dracena. These plants will always remind me of Mattie's death and the kindness of friends who tried to give me something living and to nurture.

For Peter and I it is hard to accept that tomorrow is Halloween. Another Halloween without Mattie.... the fourth one without him to be exact. I can't say that as each year goes by it gets any better. In fact, I would say that almost every holiday gets worse because you have much more time to process the loss. Another aspect of the loss is knowing that Mattie's friends and parents are celebrating this day, and yet we do not get this chance. This of course can lead to bitterness and anger, but mostly it leads to sadness and feeling isolated.

 

Monday, October 29, 2012

Monday, October 29, 2012

Tonight's picture was taken on Halloween of 2007. Unlike Mattie's other costumes, which were made of sweat suit material, this was an actual costume that I bought. Mattie and I went costume shopping together, however, the costume was too big for him. So I had to alter it, and my friend Charlie helped me convert it from a navy pilot to an air force pilot costume. Charlie sent me all sorts of air force patches which I sewed onto Mattie's costume and hat! Mattie insisted on being an AIR FORCE pilot and he knew the difference between the branches of the military, especially after visiting Andrews Air Force base during their spring open house. The picture may not do him justice, but Mattie looked very patriotic in his costume. 


Quote of the day: Through woods and mountain passes, the winds, like anthems, roll. ~ Henry Wadsworth Longfellow

 

The entire East Coast is being hit by Hurricane Sandy. Schools, Universities, and local and Federal governments are all closed. Not to mention the Metro and buses are not operational. Most if not all flights have also been cancelled up and down the East Coast. In light of the horrific winds we are hearing and seeing, I selected Longfellow's quote tonight.

 

The wind is whipping and moving all sorts of things. We have been working on securing our plants for two days now. However, we landed up pulling in several of our trees this afternoon, because they were being blown over despite securing them down. So our living room is looking GREENER.

 

Either my memory has failed, or the weather is changing, or perhaps the precautions we take now to manage storms has changed altogether. But I do not remember Hurricanes when I was a child, I do not remember schools closing because of rain and winds, and I certainly do not remember 24 hour news coverage of a storm. It is a mixed blessing to have access to so much information and to be bombarded with it minute after minute, and yet, there is a great deal of comfort knowing that this is getting coverage and we are not trapped at home alone. 

 

While Peter and I were watching the TV news today, we saw Beth Parker reporting live from Alexandria, VA. Beth and her wonderful cameraman, Nelson, have covered Mattie Miracle events two years in a row. So when I saw both of them outside getting soaked and blown by the wind, I decided to email them. Not expecting a response, but just to let them know I was thinking of them and appreciated their courage being out there. Not only did I get a response, but the message was lovely and complimentary of the work we did for the last Mattie Miracle Walk (of which Nelson and his daughter attended!).    

 

 

 

There are many photos traveling around the Internet today, but this one caught my attention. It is the ultimate picture of honor and courage, and the spirit of what America was built upon. This picture was taken TODAY and features Honor Guards standing on duty at the Tomb of the Unknown Soldier in Arlington County, VA., during Hurricane Sandy. Soldiers stand guard at the Tomb non-stop, around the clock, by the Society of Honor Guards since 1948.

Our thoughts are with all of those contending with Hurricane Sandy and as always we thank you for checking in with us on the blog.

 

 

 

Sunday, October 28, 2012

Sunday, October 28, 2012

Tonight's picture was taken in October of 2007. Mattie went to his elementary school's Fall Festival and as you can see he came back with face paint (with the words, "Go Saints," written on his face, in support of the School's football team), and washable tattoos on his hands. Mattie had a great time at the Festival with his friends. It is ironic when you think about the fact that Mattie was only at the school for about a month and a half before the Festival occurred, and at the Festival he connected with his new found friends (Charlotte, Campbell, and Kazu). Though Mattie is no longer with us, the parents of these Fall Festival friends are still a part of our lives.


Quote of the day: Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer. ~ Rainer Maria Rilke


In the November 2012 edition of Counseling Today, which is a professional publication I receive as a member of the American Counseling Association, an article within the magazine immediately caught my attention. The article is entitled, What becomes of the brokenhearted (by Stacy Notaras Murphy)? I have included some of the text from the article below, so you get the gist of what I was reading today..............

Many clients present to counseling because of trouble navigating the same human phenomenon: heartbreak. Under this label fall countless events such as a painful breakup, the death of a loved one or the failure to attain a major life goal. Counselors are in daily contact with clients struggling with some form of heartbreak, and many counselors initially focus on treating the symptoms, which might include sleeplessness, anxiety about the future and hopeless thoughts. But some in the field are conceptualizing this presenting problem as more complicated than major depression or adjustment disorder. Joanne Vogel defines heartbreak as "an intense, overwhelming, crushing grief or distress over the loss of something or someone." She notes this definition covers more than simply romantic relationships, including the death of loved ones; abandonment, abuse and/or neglect from caregivers or others; and major changes in life course, such as sustaining physical injury or moving and feeling uprooted. Vogel has likened heartbreak to posttraumatic stress, acute stress and even substance withdrawal. "For posttraumatic stress, the similarities stem from experiencing a traumatic event that overwhelms coping skills in which a person experiences threat of or actual injury. In treating clients struggling with heartbreak, I have noticed the reliving, avoidance and arousal associated with posttraumatic stress." She notes that heartbroken clients may have upsetting memories, flashbacks, re-experiencing, lack of interest in normal activities, inability to concentrate, irritability, angry outbursts or sleep disruption. John Ballew adds that care ought to be paid to the physical well-being of all clients experiencing heartbreak, including helping these clients to tune into the possible physical manifestations of the experience. "The intense distress is likely to be experienced in the body, especially if the distress goes on for a while. There is risk of hypertension, chest pain and other physical manifestations of grief. Trouble sleeping is very common, and that can precipitate other problems, from anxiety and depression to distraction at work."

As I read this article, I found that the author was actually describing my issues to a T. Though one isn't likely to find the diagnosis of "Heartbroken" in the DSM-IVTR (our mental health bible of codes and classifications), it does put a name to the very real feelings and symptoms I have. But it does it in a way that doesn't pathologize the issue. To say I have anxiety, PTSD, or grief are not exactly right on the money. But heartbroken sums it up perfectly, and as the article discussed being heartbroken can have very real mental health and physical consequences. I have bouts of anxiety and sleeplessness that have developed since Mattie's death. I had neither problem prior to Mattie developing cancer, and each one alone can be debilitating, but together they can at times feel like they are taking over my life. I remember helping many clients who had anxiety in the past, and yet as I was helping them I truly did not know how they felt. I had great empathy, but not personal insight. You can't just snap out of feeling anxious, it almost becomes a part of you like another appendage. After being thoroughly checked out this summer for heart and lung issues, I know that physically I do not have a problem. I find when I am very busy or traveling, I do not experience the anxiety as much. I have been trying to focus on triggers and ways to cope with these anxious feelings but I have found as November approaches, and I prepare for two lectures I have to give on childhood cancer and trauma, that preparing for these presentations can cause me to feel uneasy. Perhaps it is because I must reflect on what actually happened to Mattie and us to convey my messages succinctly and passionately.

Like so many on the East Coast, we spent part of the weekend getting ready for Hurricane Sandy. All of our plants and flower pots are secured and going to a grocery store in the DC area to prepare for a storm is always an experience. I would hate to see DC in a true crisis. I spent part of the day cooking all sorts of things, such as butternut squash-apple soup. One of the traditions I used to do with Mattie in the Fall was cut open a real pumpkin, clean it out, and use the meat of the pumpkin to make pumpkin-apple soup. Mattie got a kick out of the carving, cleaning, and cutting pumpkin process. Instead of cutting a pumpkin, which is a ton of work, I used a butternut squash instead in Mattie's honor. I typically do not share recipes on the blog, but I found the one below and made it tonight. Mattie would have loved it. Hope you do too!

Curried Butternut-Apple Soup

Ingredients:

2 cups chopped onion

1 rib celery

1/4 cup of margarine or butter

4 tsp curry powder

3 cups water (or chicken stock or vegetable broth)

2 medium butternut squash (about 2 1/2-3lbs) peeled, seeded, and cubed

3 medium apples, peeled, cored, and chopped

1 cup cider

Directions:

In a heavy kettle, combine onions, celery, margarine/butter, and curry powder. Cover and cook over low heat until vegetables are tender (10 to 15 minutes), stirring often.

Add the water (or stock or broth), cider, squash and apples and bring to a boil. Reduce heat and simmer 20 to 30 minutes or until squash and apples are cooked thoroughly.

Strain liquid and set aside. Puree the squash-apple mixture with 1 cup of the strained liquid to reach desired consistency. Garnish with grated apple, yogurt, or low fat sour cream.