Saturday, January 24, 2015

Saturday, January 24, 2015

Tonight's picture was taken in March of 2003. Mattie was almost a year old and in one of his favorite modes of transportation...... on Peter's back! We took Mattie to the US Botanical Gardens. Which was a wonderful space to visit, especially in the cold weather months, because it was always so warm inside and tropical. It felt like a short visit to Florida. What I love about this photo was Peter had no idea what was going on behind him. He was focused straight ahead and Mattie was focused on me. I had no idea a photo was even being taken! 


Quote of the day: There are two ways of meeting difficulties. You alter the difficulties or you alter yourself to meet them. ~ Phyllis Bottome


For the past week or so, Peter and I have been working to complete an application for Mattie Miracle to qualify to become a member of a national coalition of cancer organizations. I am sure you can relate to my sentiments as I write this, because we have all had to apply for something in our lives. Whether it be school, a job, a scholarship, a loan, etc.... Whenever you apply for something, you want to assess yourself, evaluate what you have accomplished, and hopefully when doing all of this you can make a case that you qualify for whatever you are applying for. This can be a stressful process in a way but in the end, when you sit back and look at the finished product, it really is wonderful to see the results. 

While working on this application for the past week, quite intensely, I wasn't sure at times I would ever finish, could get the words out succinctly, and capture all we have done in the last five years. However, now that I read through all that we have done on both the local and national levels, I would say it is remarkable. It is remarkable because we do not have a staff, no full time employees, and our operating budget is not significant. Yet here are some of the things we have done:

National Accomplishments:

1) May 10, 2011 - H. Res. 262 (Legislative)

Mattie Miracle began advocating on the Hill in 2010, for psychosocial awareness, support, and care.  From those efforts H. Res. 262 was created, which was designed to support efforts to raise awareness, improve education, and encourage research and treatment of the psychosocial needs of children, adolescents, and young adults diagnosed with a childhood cancer and their families. Sponsored by Chris Van Hollen (D-MD) with 22 co-sponsors.

2) September 22, 2011 - Childhood Cancer Survivors’ Quality of Life Act of 2011/2013

Mattie Miracle collaborated with Children's Cause for Cancer Advocacy and integrated psychosocial language into the Survivors' Quality of Life Act in 2011 (HR 3015). This psychosocial language remains in the Bill and was reintroduced on May 20, 2013, H.R. 2058: Childhood Cancer Survivors’ Quality of Life Act of 2013, sponsored by Jackie Speier (D-CA) with 31 co-sponsors. The insertion of psychosocial language would regulate the establishment of a center of psychosocial excellence, fund psychosocial outcome research, as well as long-term integrated medical-psychosocial follow up care for survivors.

3) March 20, 2012 - Childhood Cancer Psychosocial Symposium on Capitol Hill

Mattie Miracle hosted the first ever Childhood Cancer Psychosocial Symposium on Capitol Hill.  A room within the Capitol Hill Visitor Center was filled to capacity representing 12 different states across the country.  Our registrants were comprised of nurses, social workers, professional counselors, child life specialists, art therapists, occupational therapists, psychologists, medical doctors, and childhood cancer advocates, and leaders.  Professional attendees received continued education units for the eight hour event.  Capitol Hill staffers were present, and four Congressional Members (Rep. McCaul (R-TX), Rep. Van Hollen (D-MD), Rep. Speier (D-CA), and Sen. Reed (D-RI)) spoke and received outstanding legislation awards.  The symposium was moderated by a distinguished panel of psychosocial scientists and clinicians who conducted a congressional briefing and then delved into the cutting edge research. This was followed by a panel discussion in which the personal stories and insights from six parents touched by childhood cancer were shared with the audience.  It was at the Symposium that Mattie Miracle shared its vision for a National Standard for Psychosocial Care.

4) February 14, 2013 - First Childhood Cancer Psychosocial Think Tank

Mattie Miracle hosted an Historic Multidisciplinary Childhood Cancer Psychosocial Think Tank at the 10th Annual American Psychosocial Oncology Society Conference in Huntington Beach, CA.  The purpose of the think tank was to bring together psycho-oncology leaders (representing the fields of psychology, psychiatry, social work, nursing, and counseling) and brainstorm how to create and implement a pediatric psychosocial standard of care.  Currently, there are no U.S. standards of care for these critical services.  Standards of care define the minimum types of psychosocial services which should be available to children with cancer and their family members, no matter where in the U.S. they receive cancer care.  Standards should cover care for patients, siblings, parents, long-term survivors and families grieving the death of a child from cancer.  The day-long think tank was extremely productive and as a result four working groups were created.  These groups have monthly conference calls and periodically meet in order to further our goal.  As a result of this think tank, the American Psychosocial Oncology Society awarded Mattie Miracle with the Distinguished Public Service Award of 2013 at the conference.

5) February 13, 2014 - Second Childhood Cancer Psychosocial Think Tank

After the first think tank there were monthly conference calls with each of the working groups to review the clinical literature to ensure that the Standards generated were evidence-based.  A consensus-based approach was used to determine whether enough evidence was available for the standard to remain essential.  Mattie Miracle hosted a second multidisciplinary think tank at the 11th Annual American Psychosocial Oncology Society Conference in Tampa, FL.  The purpose of this think tank was to refine the Standards and to come to professional consensus.  At the second think tank small working groups reviewed the created Standards, evidence summaries, and rating forms as well as conducted additional reviews of specific portions of the Standards.

Local Accomplishments:

Created and endow the Mattie Miracle Child Life Program Fund at MedStar Georgetown University Hospital.  Since 2011, have contributed over $100,000 to this fund.  The fund supports psychosocial services through the creation of a child life position, a position which assists 3,500 children and families each year.  Mattie Miracle received the MedStar Georgetown University Hospital's Special Recognition Award in 2011 and the Flame of Hope Award in 2014 in recognition of our contributions to the Hospital and the childhood cancer community.

Mattie Miracle is a founding member and now the main contributor of the MedStar Georgetown University Hospital free snack/item cart.  This cart revolves around the in-patient pediatric units and offers free snacks and toiletry items to parents and caregivers of inpatient children who are unable to leave the units and get their basic needs met while caring for their children.

The Foundation runs two successful item drives within the community every year to stock the free snack/item cart.  This year we collected 4000 pounds of post Halloween candy which was distributed to 5 local hospitals and 5 cancer organizations, such as Ronald McDonald Houses.  On average, we donate over $10,000 worth of items to the MedStar Georgetown University Hospital cart per year.  Fox 5 DC covered our candy drive in 2013.

For the past three years, Mattie Miracle has funded a monthly pediatric nurse support group luncheon at the MedStar Georgetown University Hospital.  Nurses are on the front line of managing many of the day to day issues that their pediatric patients and families with cancer are experiencing.  We are committed to helping meet the psychosocial needs of nurses so that they may continue to provide the highest quality care to their patients and families.

Each May, Mattie Miracle sponsors an Awareness Walk & Family Festival in Alexandria, VA.  On average 500 people from the Washington, DC, Maryland, and Virginia area attend, in order to raise awareness about childhood cancer and funds for the Foundation.

Happenings for this year:

1) March 2015 - National Comprehensive Cancer Network (NCCN) Annual Conference Poster Session 

Mattie Miracle will attend the NCCN's 2015 annual conference in Hollywood, FL and present a formally accepted research poster on "Establishing Psychosocial Standards of Care for Childhood Cancer." The poster will describe the history of the project, the methodology of how the Standards were created, and the results of the project to date.

2) 2015 Springer Publications

Sardi-Brown, V., Kupst, M. J., Brown, P. J., Wiener, L. (in press). Psychosocial issues in children with cancer: The role of patient advocacy and its impact on care. In R. M. Henshaw (Ed.), Sarcoma: A Multidisciplinary Approach to Treatment, Heidelberg: Springer.

Sardi-Brown, V., & Brown, P. J. (in press). Parents' perspective on the role of psychosocial care: Conversations and approaches. In A. Abrams, A. Muriel, & L. Wiener (Eds.), Pediatric Psychosocial Oncology: Textbook for Multi-disciplinary Care. Springer.

3) July 2015 - Symposium at 2015 World Congress of Psycho-Oncology (IPOS/APOS)

Mattie Miracle will sponsor a Symposium at the International Psycho-Oncology Society and the American Psychosocial Oncology Society's World Congress in Washington, DC. Co-Founders will present the history behind the Standards for Psychosocial Care project, provide a summary of the current status of the project, and discuss hopes for implementation. The project's research and clinical leaders will describe the process used to develop the current recommended Standards, including: how the literature reviews were conducted, consensus calls, and the appraisal of the existing supporting literature. Each of the Standards will be presented along with a summary of the evidence found.

4) Fall 2015 - Supplemental Issue of Pediatric Blood and Cancer

Mattie Miracle is funding an on-line supplemental issue of Pediatric Blood and Cancer devoted to the "Standards for Psychosocial Care of Children with Cancer and their Families." This work will describe the process used to develop the Standards, which will then be followed by a series of 14 brief papers that will provide detailed information on each standard, including tables of evidence and approaches to address barriers to implementation.

Photo highlights from today! Our wonderful amaryllis that comes back year after year --- is in full bloom in our living room!!! A glorious sight!

A not so glorious sight!!! Our resident falcon is back! This falcon likes to swoop down and chase our sparrows and grab one or two for a snack off the feeder when possible. Thankfully today all the sparrows were too quick and escaped unharmed! 

Friday, January 23, 2015

Friday, January 23, 2015

Tonight's picture was taken in January of 2003. Mattie was 9 months old and he absolutely loved riding his "tot wheels." It gave him instant mobility, independence, and freedom. This happens to be one of my favorite photos of Mattie that Peter took, I think his smile was so captivating as he was staring right up at me. Our outdoor area was ideal for "tot wheel" time. Mattie would zoom up and down our commons area at lightning speed, honking his horn, and pushing all the lights, whistles, and other gadgets on this walker that made noise. 


Quote of the day: A cat has absolute emotional honesty: human beings, for one reason or another, may hide their feelings, but a cat does not. ~ Ernest Hemingway


In August, my friend Linda lost her long time and precious cat, Ashley. When you share a special bond with an animal, it is always very hard to say good-bye and put them to sleep. When I visited Linda's home today, I got to see several of her wonderful Ashley tributes, from a lovely canvas photo of him to a special woven blanket with images of Ashley integrated into the fabric. All just beautiful and meaningful tributes to a special member of the family. 

In October, Linda went to the shelter and rescued Gigi. Gigi is lucky to have found a good home considering she has a medical condition which requires that she receive care and treatment each day. She is a beautiful cat, easy going, and loves attention. I sat next to her today and pet her head, neck, and back. I could have done this for hours and she didn't flinch. I certainly know if I had done this with my own cat, Patches, this would have been problematic. Either Patches would have gotten up and moved way or taken a paw to me to bat me away. Patches did not like to be touched for long. As I used to joke..... "she tolerated us!" Of course despite that, I loved Patches and came to appreciate all her quirky behaviors, but she was not what you would call an affectionate cat. 

As I was visiting Gigi today, a part of me was thinking.... how could I get Gigi into a hospital ward to visit my friend Mary Ann?! My good friend is in the hospital and LOVES cats! Mary Ann has always wanted a red tabby like Gigi in her life and I know a visit from Gigi would perk her up. But somehow cats are NOT welcomed in a hospital setting. Thankfully pet therapy has finally made its way into hospitals, but to my knowledge it is only with dogs! Probably because dogs are trainable and cats, well.............. they are harder to train! Yet a cat is an excellent companion and will stay on a patient's bed for hours, if you have the right cat!  

Thursday, January 22, 2015

Thursday, January 22, 2015

Tonight's picture was taken in January of 2006. This was so typical of Mattie. He built something out of Legos and then decided to use it to step on it to reach up and grasp at things. There was no telling exactly what Mattie would do with this piece of Legos that he stacked together. But chances was, it wasn't going to be used for ordinary purposes. With Mattie you always had to think OUTSIDE THE BOX. That was what kept you on your toes constantly! It was mentally challenging and physically exhausting. Mattie had energy for five children and he never needed to nap or have down time. He had two modes...... very on and off. 


Quote of the day: I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. ~ Maya Angelou


Peter and I LOVE this quote. I have even heard Peter use it during our presentations. This week when I went back to our post office where our Foundation PO Box is located, I had an amazingly pleasant surprise. My favorite postal worker, Darryl, is back working at our branch! This may not seem like a huge deal, but it truly is!!! Darryl is outstanding, and honestly if the post office could clone him, everyone would want to do business with the US Post Office. He is customer focused, super friendly, helps you with packages, is patient, and he does this with all of his customers. He has a fan club, of which I am one. Let me put him into context for you. 

In prior years, I would do a mass mailing for the Foundation every December. In my mailing I would send out a bulky envelope which included something like a pen. However, to ship a pen, I would need to put that in a padded envelope which would require special postage and also to assure that the pen wouldn't get damaged or broken, the envelope needed to be hand canceled at the post office rather than processed through a machine. If it would go through a machine, the machine could potentially crush the pens and then there would be the end of my mass mailing..... I would have a very poorly looking fundraiser/annual drive going out to donors. 

Darryl understood this, so you know what he would do with me? He would help me put stamps on all 500 envelopes and also hand cancel every single envelope right in front of me. I can assure you this was laborious especially over a mail counter, since I wasn't allowed behind the counter. Since this occurred during December, there were lines at the post office. Yet Darryl would help me and also process people behind me at the same time so they wouldn't get mad. There would be mountains of my envelopes everywhere! You couldn't help but notice me! I was a conversation piece for everyone who came into the post office some years. Lots of people talked to me and felt badly because they thought some company put me to work doing holiday cards and the office mass mailing. Little did they know, this mass mailing was self inflicted! In any case, Darryl assisted me with the Foundation mass mailing for years! Then one day, I noticed Darryl's place in the post office was cleaned out and he was gone. I asked all his colleagues where he went, but no one gave me a straight answer. I was devastated. I missed his kindness, his cheery disposition, and most of all I knew when he was there our Foundation was in good hands. He looked out for our mailbox!

After Darryl left, I had to change our whole December mass mailing process, because there was NO ONE else at the post office who would help me with stamps or hand canceling envelopes. Which is why when I saw Darryl back at his post this week, YEARS later, I was stunned. He came from behind the counter to hug me. I told him I missed him and don't you know he asked how my mass mailing had been going since he left! So I told him!!! Needless to say, I took my Mattie Miracle awareness pin off my coat, and gave it him. Darryl likes to wear pins on his tie, so I felt he need our pin. I told him he helped me raise a great deal of money year after year, and I couldn't have done it without his help! When I came into the post office today..... he still had the pin on which I gave him earlier this week!!!

Darryl is the perfect example of Angelou's quote, because I never forgot how he made me feel after all these years. But I am NOT alone. Before Darryl left the post office, he had a memory board up at his work station of customers who wrote him notes, gave him photos, and so forth. He is that lovable! We live in a world where so many people think how we treat each other doesn't matter, that our feelings for one another are fleeting and meaningless, but I would say quite on the contrary. At the end of the day it is feelings that linger.... they are tantamount and carry us through the storm. 

Tonight Peter is in Texas and he sent me this adorable photo!!!

Wednesday, January 21, 2015

Wednesday, January 21, 2015

Tonight's picture was taken in April of 2003. Mattie was dressed up for his first birthday party! Peter brought Mattie outside onto our deck where his birthday cake was... in order for him to blow out his candles. That particular April day was relatively warm out. Which was noteworthy because after that year all of Mattie's remaining birthdays were either raining or blustery. 


Quote of the day: I have always liked coming home and sharing what has happened that day with my loved ones. I like comparing notes. I know other people do, too. I think there is a human instinct to tell stories, no matter who you are or where you live. ~ Sarah Kay

Peter has returned home from his trip to New Orleans. I am not sure how he does it because tomorrow, he gets back on a plane and is headed to Texas. It is never a dull moment for Peter. While he was traveling around, it wasn't boring for me either, as I have passed two kidney stones in the last day. Fortunately I have experienced this before in October, so when this pain started yesterday, I knew exactly what was happening. Yet when it starts, you do have to wonder when will it end? 

In any case, as Kay's quote so aptly stated, Peter and I do like to "compare" notes with each other and when he returned home from his trip today..... we exchanged stories. Of course we have different styles and manners of doing this. Peter's is more calm and even toned and mine is more charged and emotional. When it comes to Foundation issues, at times I can fly off the handle, but Peter is an experienced listener and friend. He certainly can push back when necessary, but he also understands the overall stresses of what I am trying to balance and run not just from a work standpoint but from the emotional angle.

Which is very much appreciated!

Tuesday, January 20, 2015

Tuesday, January 20, 2015 -- Mattie died 280 weeks ago today. 

Tonight's picture was taken in October of 2002. Mattie was six months old. Upon first glance this photo may look darling, cute, and cozy. But if you knew Mattie well then you knew he HATED being in his crib and especially lying flat. His pediatrician encouraged me to keep introducing him to his crib and to give him time in it, but time in his crib led to two things.... non-stop crying and vomiting. It was a horrible routine and Mattie could cry for quite some time. We only broke this crying habit when I deemed he was no longer an infant and I could begin to rationalize with him, which had to be around 16 months of age. But until we got to that stage, we had some fascinating nights, or lack there of, of sleep!


Quote of the day: You must learn some of my philosophy. Think only of the past as its remembrance gives you pleasure. ~ Jane Austen


As this is Mattie's blog, I typically reflect on the loss of Mattie and the impact this tragedy has on my life. Yet today marks the 21st anniversary of my maternal grandmother's death. When I was in college my grandmother suffered a massive stroke which left her partially paralyzed on her left side. Now some people maybe saying.... well that is terrible to hear but at least that wasn't one of Vicki's parents. This is indeed true, except when someone tells you about a loved one who is ill or just died, you really need to first assess how close these individuals were to one another. In my case, I was very close to my grandmother. She lived in the same house with me and my parents and at times I viewed her as a second mom, or even as a sibling. So her illness and death are significant to me and transformed my life.

The stroke transformed my grandmother physically. She could no longer walk, feed, dress, toilet herself, or meet any of her activities of daily living. In addition, she couldn't concentrate on anything, therefore she couldn't watch TV, read, hold a conversation, and forget about swallowing anything. All of these things were impaired by her stroke. Initially after hospitalization my grandmother lived in our home for a year. Our home literally was transformed into a hospital and with that, people were too scared to visit us. My mom became my grandmother's primary caregiver but given the severity of my grandmother's health needs and the intensity of the care provided for over a year, my mom became gravely ill and landed up in the ICU for weeks. I distinctly recall the ICU nurse telling me that my mom's body was shutting down with sepsis and that she could die. It was at that point my grandmother was placed into a nursing home. Both my mom and grandmother needed care. Needless to say, from my family experience it is no wonder that when I entered graduate school, my focus became gerontological counseling and my dissertation focused on the stresses of caregiving. 

My grandmother and I were very close to one another. When she died, I was living in Boston, going to graduate school. Twenty one years ago today, on the morning that she died, I was sleeping. In my dream I can still recall be given a big bouquet of red roses. As I went to receive the roses in my arms to admire them, all the petals from the roses literally fell right off of them. I was left with only the stems and the petals were all on the ground at my feet. As I was watching this in my dream, I was forced into consciousness because my telephone was ringing. In my stupor when I answered the phone, my mom was on the other end of the line to tell me that my grandmother had just died. When she told me, I wasn't surprised because in my dream the dead roses were my sign from my grandmother that she died. 

My grandmother's personality was very needed in our household. Mainly because we are all very fiery in temperament. My grandmother in many ways was soft spoken, gentle, very kind, thoughtful, an excellent cook, very family focused (family came before her needs, which maybe part generational, but I suspect partly that was just who she was), and she loved animals and seemed to be nurturing every animal that found its way to our doorstep. My grandmother never graduated from high school, but honestly you could never tell. She was very bright, an avid reader, she loved to travel, people loved her, and I particularly found it hysterical that she could sit down in front of a piano and play despite the fact that she couldn't read music.    

Photos with my grandmother were taken before the digital age! After Mattie died, I did a lot of cleaning out of things and tonight I panicked because I couldn't find any photos with my grandmother. Peter is on a plane to New Orleans and while he was boarding I was text messaging him for help locating photos. Together we determined where I could find some! This photo was taken by Peter on New Year's Eve of 1989. He captured me with my parents and grandmother. 

I happen to love this photo. This photo was taken when I was in high school. We were living in Los Angeles at the time. But we would get home sick for New York and make periodic trips back to visit family and friends. So clearly we made a summer trip back to New York and we had lunch at Rockerfeller Center. In the summer time the ice skating rink becomes this lovely cafe. In any case I was sitting between my grandmother and my Cousin Clara (in stripes). Twenty one years may go by, but my grandmother is still remembered. If you are curious her name was Anne and by the way that is also my middle name. 

Monday, January 19, 2015

Monday, January 19, 2015

Tonight's picture was taken in January of 2005. Mattie was almost three years old by that point and he was a bundle of energy! If I was in the kitchen, he wanted to be in there too. I was working on the dishes and he was right along side me on the counter supervising the process. He was my trusty sidekick and just by his expression on his face, can't you tell he had big plans for some kind of mischief? 


Quote of the day: All sorrows can be borne if you put them in a story or tell a story about them. ~ Isak Dinesen


Last week over lunch with my friend Annie, she mentioned an article that resonated with her in the New York Times about grief. She asked me if I had seen or read it. I hadn't, which was unfortunate but wanted to track it down. As the week went on, I then received an email from Mattie's head of school, or as my faithful readers know him as...... "the Magic Man." Just so happens Bob sent me the link to the very same article that Annie was talking to me about at lunch. He was curious to know if I had seen the article, because he felt that it discussed many of the issues and feelings I had expressed about grief to him and on the blog. After hearing that, I was even more curious to read the article because with grief I sometimes feel like I STAND ALONE. Like I am the ODD WOMAN OUT. So when there is someone else that is speaking my language, I want to stop and listen.

This article in the New York Times is entitled, Getting Grief Right. What I love about it, besides the fact that it is absolutely SPOT on, is that it is written from the point of view of a parent and a psychotherapist. Dr. O'Malley, through his eloquent writing and insights, is trying to make a case that the long established model held within our society and within the practice of the mental health field needs to be redefined. That mind set believes that there is a finite time line to grief and that timeline follows a degree of intensity. All of which is not helpful in many cases and usually frustrates the griever. Personally in addition to frustrating the griever in some cases what happens is this demand to fit into society and to pretend that everything is fine, to have to put our grief aside because it isn't deemed normal to talk about and we are expected to maintain a cheery and rosy outlook about our future, only sets us up for mental health issues in the future. Particularly for parents who lost a child. They need to talk about their child, they crave to keep their child's memory alive, not to squelch these thoughts and feelings because it is easier on the world around them. Asking parents to move on, besides being disrespectful has always been extremely counter productive to me in the healing process, and thankfully after reading Dr. O'Malley's article, he confirms my feelings and apparently uses this strategy with his patients.  

Mary came to O'Malley after seeing two other therapists for grief. Those other therapists were not a good match for her. She instead came to see O'Malley because she heard that he lost a child and therefore she felt he would understand how she felt and knew he had a track record for helping others with grief. Instead of talking about her grief symptoms he did something very different. He spoke to her about her child, a very novel approach for her! 

The article discussed the frustration and feelings of being pent up with grief and trying to figure out why as grievers we aren't further along in the grieving process. In essence why aren't we over it!!! Why hasn't the sadness lifted?! Why haven't we been able to move on???!! In fact if you talk to anyone who is grieving these are the questions you hear from ALL of us!!! Guess why we are asking these questions????? Certainly we ask these questions because grief is painful and we don't like living with this pain, but the other reason why we ask these questions of ourselves is because we know we stand out in society! We know we don't fit in and people view us as different. O'Malley believes that sadness is a measure of the love and attachment lost. Certain bonds and degrees of attachment mean certain things to us and when they are lost they impact our lives significantly, they affect our identity, our meaning in life, and our emotional connections. He refers to this as the chapter 1 in the story of loss. 

The chapter 3 in his story of loss also resonated with me because this chapter has to do with the long road ahead. In many ways it is a lifetime of grief. The question is how to survive it? This is when people stop asking you how you are doing. This time period differs for everyone. For some people the support and concern ends in days, some it is weeks, and for some it is the first year. Whenever it happens it is devastating because the question becomes..... how can I manage this alone? Has everyone forgotten? Their lives have moved on, and in our case, I see that their children are still growing and developing, but for me, I still lost mine. This is a hard road paved with mixed emotions, not always pretty emotions to come to terms with. 

I am squarely in chapter 3, and like O'Malley has pointed out, I realize closure isn't possible and I have stopped looking for it, for myself and certainly from other people. I have accepted that and what I love about his article is how he ends it with the profound quote..... “All sorrows can be borne if you put them in a story or tell a story about them." I think this is maybe why I continue to write the blog (I'm telling Mattie and our story daily - I'm keeping the "sacred" bond between Mattie and I alive!) and also maybe why O'Malley recommends people seek support groups. Groups (though they don't work for everyone) enable us to continue to tell our story, to keep our loved one's memory alive, and in essence as long as we do that on some level that person never dies for us. The bond isn't broken. When articles like this are published it really does normalize grief for all of us, because so many of us struggle and hide behind a facade of trying to look normal and behave in a society which can't possibly handle the painful realities of life's circumstances.

Getting Grief Right
http://opinionator.blogs.nytimes.com/2015/01/10/getting-grief-right/?_r=0

Sunday, January 18, 2015

Sunday, January 18, 2015

Tonight's picture was taken in January of 2004. Mattie was almost two years old and as you can see..... fully on! He loved playing with boxes. He always made me laugh because he was surrounded by toys and even though he loved his Legos and trains, he somehow always found his way back to cardboard boxes. They really engaged him and kept his attention and stimulated his imagination.  He would round them up from all over our home and then he would start creating and playing with them.  

Quote of the day: Most of the successful people I've known are the ones who do more listening than talking. ~ Bernard Baruch

Today was one of those cold, grey, and raining days in Washington, DC. In essence, not my kind of day. Peter and I worked on several Foundation items. While I was sitting at my desk, staring out the window, I could see the birds buzzing about our feeders. So I grabbed my camera to snap a few photos. Fortunately my camera has a wonderful zoom lens otherwise we could never see these details. Clearly we are feeding a significant sparrow population in DC! We have been feeding this population for over a decade now! I am quite sure it is the same group of birds since sparrows can live a long time! They seem to know us and they know exactly where to come each year for food. 

For years we would feed them from the hooks on our deck. Many of these sparrows still fly into our deck area and perch on these hooks. They have gotten used to their new feeding location this year, but old habits are hard to break. 

Several of my neighbors upstairs love our garden in the summer time and look forward to seeing what we will do each year. But many of them also look forward to us feeding the birds in the wintertime. This weekend, I bumped into one of these neighbors in the elevator. Peter never met her. I only told him about her. Any case, she was all aglow about the NEW feeding location and Peter was just absorbing this transaction and conversation! I know it is hard to imagine that birds could bring such joy to a few of us. But they do! When you live in the city and it is the winter, watching the birds connects us to life and I am happy that those above me appreciate this. Feeding and caring for the birds is also an effort and labor of love. On any given week, one of both of us is lugging 80 pounds of bird seed home for these feathered friends to eat. It is hard to believe they could go through SO MUCH seed, but they do. I am sure people appreciate nature for different reasons, but I have come to see a great commonality for those of us who lost children to cancer. Many of us seek out nature, feeling connected to it, and being a part of it. For me, the birds are my winter refuge.