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.

Saturday, October 27, 2012

Saturday, October 27, 2012

Tonight's picture was taken in October of 2007. We took Mattie to a Fall Festival, and this wooden pumpkin person caught Mattie's attention. It is interesting to me how Mattie gravitated to bright colors like orange and red. Colors which naturally were selected to symbolize his Foundation.











Quote of the day: I feel the capacity to care is the thing which gives life its deepest significance. ~ Pablo Casals


Peter has been struggling with a sinus infection all week, and today, I feel like I am losing the battle. So we are both wiped out, with congested heads, and with not a lot of energy to do much. In fact, I woke up this morning, made breakfast, and then went right back into bed. However, by lunch time, thanks to Sudafed, I was able to get up and out. To somewhat function. We decided to take a walk on Roosevelt Island, since we are bracing for a ton of rain and wind for the next couple of days.

When we got to Roosevelt Island we were greeted by a park ranger who informed us that today was Roosevelt's birthday. Therefore the Island was decorated and celebrating the occasion. As you can see flags lined the bridge onto the Island. The flags were wonderful, we got to see the US Flag with 33 stars on it and one with 25 stars on it, obviously before our flag reflected all of our 50 states. There were also military flags, a commander and chief flag, and a US parks flag. Roosevelt was a renowned ornithologist, an expert on and hunter of big-game animals, but also a pioneering American conservationist. He was a country squire, horseman, socialite and patron of the arts. His love of birds and nature are beautifully captured on this little piece of city paradise. A piece of paradise Mattie always loved visiting!

 

 

This is a piece of the Island we do not always photograph and post on the blog. However, there is a wonderful statue of Teddy, along with some of his powerful quotes on this portion of the Island. As you can see in the picture, there were tents set up. Many of the tents featured hands on experiences for the young and old alike. Animals of all kinds were featured and we could pet and even hold them. There was also a birthday cake offered to visitors! Teddy Roosevelt was our 26th President and was 42 years old when sworn in as President of the United States in 1901, making him the youngest president ever. Roosevelt was a sickly child who suffered from asthma and stayed at home studying natural history. This fact is crucial to understand about Roosevelt, because being sickly enabled him to spend a great deal of time developing his passion and love for nature and animals. Which is why the number one way to celebrate Roosevelt's birthday is to pass along his love for animals and nature to his visitors. The next two pictures capture the festivities and educational hands on activities occurring by the tents.

 

 

Under one of the tents we were introduced to this creature, called a Sugar Glider. A first for me! The sugar glider is a small, omnivorous, arboreal gliding possum belonging to the marsupial infraclass. Sugar gliders are named for their preference for sugary nectarous foods and ability to glide through the air, much like a flying squirrel. Sugar gliders can be found throughout the northern and eastern parts of mainland Australia, and in Tasmania, Papua New Guinea and several associated isles, and certain isles of Indonesia.

 

The next tent featured a ferret. I entitle this picture.... Peter's new buddy! Patches would be SO jealous if she saw this! The ferret is a domesticated mammal. Ferrets are predators with males being substantially larger than females. They typically have brown, black, white, or mixed fur. They have an average length of 20 inches including a 5 inch tail, weigh about 1.5–4 pounds, and have a natural lifespan of 7 to 10 years. Ferrets are crepuscular, which means they spend 14–18 hours a day asleep and are most active around the hours of dawn and dusk. Unlike their polecat ancestors, which are solitary animals, most ferrets will live happily in social groups. Like many other carnivores, ferrets have scent glands, the secretions from which are used in scent marking. As with skunks, ferrets can release their secretions when startled or scared, but the smell is much less potent and dissipates rapidly. The fellow Peter was holding had his scent glands removed!

 

There was also a bunny, mice, and other furry creatures for kids and adults to hold and learn about. After the festivities, we walked around the Island. I snapped this picture on the boardwalk. The trees have definitely changed and have lost most of their leaves.

The beauty of Roosevelt Island during the Fall!

 

Peter heard this bird, before I spotted him on a tree. To me Cardinals symbolize the winter season approaching, which of course isn't true. They are around all year long, but perhaps I can see them better on the trees during the winter season, which is why I associate them with winter. To me they are a bright spot to see during the cold and bleak months ahead.

I entitle this picture.... "Who's watching who?!" Peter made a noise to capture the Cardinal's attention, and as you can see, this bird was staring at us, as we were staring at him.

Toward the end of our walk, we always pass this huge tree. Peter has a favorite pine he loves on the Island and he typically photographs this tree's changes with the seasons. For some reason this tree always captures my attention. Maybe because near it we spotted wild turkeys with Mattie, or near it we saw woodpeckers, or perhaps this tree's size and shape just commands my attention.

 

After our Roosevelt Island excursion, we went out to lunch together. The goal of lunch was to brainstorm the content for an hour long palliative care presentation we are giving at an upcoming conference on November 16, at the Hospital for Sick Children in Washington, DC. Peter and I have typically served on palliative care panels, but for this particular conference we have been selected to be the only parent speakers. Peter did not know what hit him today at lunch, mainly because ideas and stories about Mattie and our experiences were flowing right out of my mouth. Mattie and the Foundation are my job, and just like anyone who works full time, one's job tasks and responsibilities become second nature to them. Citing examples about Mattie's health care, lessons to be learned, and advocating for the treatment of both the psychological and physical concerns of a pediatric patient are all topics fresh in my head, and very real in my heart and mind. As I was recalling some of our stories and experiences with Peter, he landed up crying. Which I totally understand, because reliving our story and our experiences are painful. It takes courage, strength, and love to get up on a stage and do this. Because at the end of the conference people go home and on their merry way, whereas for us, we have opened up old wounds and are left to contend with the consequences. It is of course our hope that in sharing our story and insights that this effects how health care providers interact and treat future patients. This is our number one motivator, along with keeping Mattie's memory alive. Something must be learned from Mattie's battle and death, so we push ourselves to do what I would deem emotionally challenging.

Friday, October 26, 2012

Friday, October 26, 2012

Tonight's picture was taken in October of 2006. As you can see, Mattie was posing next to the Halloween cards he received as well as the little pumpkin he carved in preschool. Mattie loved receiving mail and simply enjoyed the fun and spirit of Halloween.



Quote of the day: No love, no friendship, can cross the path of our destiny without leaving some mark on it forever. ~ Francois Mocuriac

Today I attended a luncheon I planned for Bonnie, our executive director of the DC counseling licensure board. As I have mentioned before on the blog, Bonnie is retiring in a week. Our board is very fond of her and after a decade working together, there was no way I could see her leaving without acknowledging her in some way. Bonnie is the person sitting in this picture and then standing behind her are the members of the board which is comprised on licensed professional counselors (missing from the picture is the board staff). From left to right are Laurie, Vicki, Art, Terri, and Mirna. As a token of thanks to Bonnie, our board gave her the beautiful necklace and ear rings she is wearing. The wonderful and meaningful part about this gift is that the jewelry was designed and created by Laurie. So these pieces are unique and will hopefully always remind Bonnie of our board and how much we appreciate her professionalism and years of dedication to us and to safeguarding the public.

 

Later in the day, I went to visit my friend Mary, who lives in an assisted living facility. Mary was unable to talk tonight and I could tell she wasn't in the best of moods. Yet somehow sharing this mood with someone can automatically brighten one's day. I always allow and respect Mary to be in whatever mood she is in, I don't try to change it. However, I find as I talk with her and read stories to her from a newspaper about her home town in Massachusetts that this miraculous changes how she feels. One wouldn't be able to assess this change easily, since Mary can't verbalize the difference. But I can see the subtle changes in her facial expression and eyes. Despite Mary's incapacitated state, she always makes me feel appreciated. She is convinced I am an angel or her angel (using her words), which of course I am not. But it is nice to know that in her eyes I am making a difference in her world.

 

Thursday, October 25, 2012

Thursday, October 25, 2012

Tonight's picture was taken in October of 2006. We took Mattie to a Fall festival and he was very eager to climb up this wall to see what was inside. As you can see right behind Mattie was Peter, spotting him as he climbed up the wall. Mattie loved being outside, adventure, exploration, and he loved having Peter home to do things with him on the weekends.








Quote of the day: Don't let your character change color with your environment. Find out who you are and let it stay its true color. ~ Rachel Joy Scott


The quote I posted tonight I heard during the Rachel's Challenge presentation I attended on Tuesday. It is almost hard to believe that Rachel was only 17 years old, and yet even at that tender age, she just understood what mattered in this world. In a way, she was much more mature than her biological age. Her level of empathy, care, and compassion for others around her, are attributes that are not always associated with her age group. So many teens, clearly NOT all, are self focused, are concerned about their own best interest, and well-being. Some of this is just part of the developmental stage of adolescence, and yet I truly believe that our society, in so many ways, rewards this behavior. Which is why hearing a program like Rachel's Challenge is so refreshing. It is so human and real, which is why I suspect it resonates with teens. It is not the typical rhetoric! It was not an educational lesson, citing research, and stating facts about bullying. It was far more hands on and told through a real life story and tragedy. A story which must be told in order to honor those precious lives lost.

Teens are craving the opportunity to talk about feelings, to share their hurts, and to learn that others around them understand. Yet, so many teens these days can't verbalize feelings. They can't verbalize feelings because the adults in their lives can't do this either. I am sure some of you think I am joking, but there is a significant component of our population who can't describe feelings beyond.... happy, sad, mad, and angry! Yet emoting feelings is just, if NOT, as important as stating a thought. Feelings are what makes us human, it is what connects us with others, and feelings are what sustain us during challenging times. It is Thursday and yet I continue to reflect on Tuesday's presentation. The presentation is so meaningful because it captures your heart, it got you to reflect on feelings, and to evaluate what each of us can do at the most simplistic level to make a difference in the lives of others.

Rachel's quote is so meaningful because what she was saying is that one's character is unique and important. It is also special because it belongs to us, and as such it shouldn't change depending on where and who we are with. Being true to one's character takes courage, but at the end of the day, people might not always agree with us, but they will respect us for having convictions and being consistent. Needless to say, I am happy to hear that so many of you enjoyed hearing about the presentation I went to, and I am thrilled some of you decided to take Rachel's Challenge. A challenge I posed to you last night.

I would like to end tonight's posting with a message from my friend and colleague, Nancy. Nancy wrote, "The last few days on the blog featured two different themes for me. One was Mattie's love of Halloween and a change of seasons along with the creative way that you kept him warm and safe for trick or treating. The other is a deeper learning experience through your selection of the quote of the night and the message that it inspires. Even those days when much of the blog is focused on daily activities for yourself and the Foundation, it is filled with a beautiful message. Your way of expressing yourself is much like Craig's. It is compassionate and genuine and it resonates with many different groups of people. Isabel's call to you signifies the power of transference for me. She was able to take the messages that she heard earlier in the day and took Craig's challenge to let you know how special you are to her. I'm glad that Heidi invited you to the lecture. It appeared to give you another avenue for sharing your story and relating to another human being's extreme loss. Rachel had to have been very unusual for a High Schooler for her brother to take up this cause. I think that is what meant so much to the students is that this young man was discussing a time and space that is easily identified with as these high school students either know someone like "Eric and Dylan" or may even feel like them."