Saturday, June 20, 2015

Saturday, June 20, 2015

Tonight's picture was taken in August of 2003. We took Mattie to Los Angeles to visit my parents and while there Mattie became fascinated with the piano. So Peter put Mattie on his lap so he could explore and play away on the keyboard. Mattie wasn't expecting me to take a photo of him, which was why he looked somewhat stunned by my presence. 

Quote of the day: We should not let time heal all wounds. We have all been wounded, hurt and saddened, and if we let time heal, we will forget these people - and that is something we must never do. ~ Barry Kluger

As tomorrow is Peter's sixth Father's Day without Mattie, I began searching the Internet today to see what other dads have written about this subject. I was curious to know how they feel about Father's Day now that their child is gone from their lives. I came across this very touching article written about Barry Kluger that really resonated with me. I felt that his sensitivity and honesty over the loss of his daughter were very captivating and refreshing to read about. Refreshing because for the most part in the world of grief, so many articles are trying to tell us about getting over it, looking at the brighter side in life, how time heals all wounds, and how the feelings become less raw with time. Barry's article spares us these platitudes and instead shares that Father's Day, even 9 years later after the loss of his child is hard and will always be hard for him. What particularly caught my attention is that Barry and I share the same philosophy...... that if we allow wounds to be healed then we are forgetting the memory of the loved one we lost from our lives. 

I would say it is very hard to know how to celebrate Father's Day and Mother's Day. Do you go out and share the day with others? I know it is challenging for me to hear people wishing each other happy mother's day to each other in stores, and I know Peter feels the same way regarding Father's Day. Yet at the same time, it is hard when no one remembers either. Barry's article addresses this too and he says... "If you know a dad who lost a child, call and tell him you know Sunday will be a difficult day, but you were thinking of him. We need to hear that. And if you are out and about, stop and give a moment's recollection of the children who are gone. Believe me, wherever we are, we dads will feel that." I couldn't have said it better myself!

SHARE: Father’s Day For Dads Who’ve Lost A Child: This Day Is Still Ours by Barry Kluger

http://www.empowher.com/community/share/father-s-day-dads-who-ve-lost-child-day-still-ours

Peter and I visited Woodend Sanctuary today. Woodend Sanctuary is one of the few remaining grand old estates in Chevy Chase, Montgomery County, Maryland. The 40-acre property dates back to a 1699 colonial land grant. John Russell Pope, architect of the Jefferson Memorial and National Gallery of Art, designed the house in the late 1920's for Captain and Mrs. Chester Wells. With its architecture symmetry and geometric proportions, Woodend Mansion is an admired example of Georgian Revival. The Greek-style portico and entrances illustrate Pope's eclectic approach to the revival of classical forms. Inside, the large Palladian window over the first floor staircase, the French doors to the terrace, and the Georgian moldings enliven the Great Hall. The Wells Family bequeathed the Woodend Mansion and property to the Audubon Naturalist Society in 1968. The Mansion is listed on the National Register of Historic Places and the Montgomery County Master Plan for Historic Preservation.

The property of Woodend is very tranquil and serene, and it is filled with champion trees, as they call them. Very old trees like this amazing ginkgo tree.

This is another champion tree, a beech tree, pointing its way to the mansion!

Surrounding the property is this beautiful and lush greenery! 

There are walking paths also on the property, which we ventured on today. 

Along the pathway, we came across this beautiful deer

just sitting very quietly and sit. For an afternoon rest from the heat. 

At the end of the walk, it leads you to this tranquil pond. The whole property is very charming and very doable. The last time we visited it, we had Mattie in tow. Which is why I really had no recollection of ever being here. Until we actually drove onto the property today.... then aspects of our visit from over ten years ago came back to me. 

Friday, June 19, 2015

Friday, June 19, 2015

Tonight's picture was taken in July of 2003. Mattie was 15 months old and exploring the Outer Banks of North Carolina with us. I remember this day very well. It was super hot, but despite the temperature, we were out in the mid-day sun touring around and exploring things with Mattie. Mattie wasn't in love with the beach that year, so by day we were very active and having all sorts of adventures all over the Island. 


Quote of the day: It kills you to see them grow up. But I guess it would kill you quicker if they didn't. ~  Barbara Kingsolver


Kingsolver's quote is VERY true. It is hard for parents to see their children grow up before their eyes, mature, and evolve to the point of independence. But in the end that is what every parent ultimately wants..... a responsible, mature, morally guided, and independent child. I am not sure what she is implying with this statement.... "I guess it would kill you quicker if they didn't?" Meaning that no parent wants to raise an immature and irresponsible child, but I of course look at this quote from my lens and can only think.... what happens if your child is taken from you too soon and you never get to see him grow up? Well that is definitely an issue, and an issue Peter and I face each day. This issue becomes even more heightened (if that is possible) around holidays, such as Father's Day coming up. 

I am not sure how we were planning on spending the weekend. In fact, I would say that weekends have become challenging again for us. I am not sure if this is a post-walk issue or just how things are right now, as we typically go through cycles and phases with grief and loss. But our weeks are structured and therefore they provide more security, whereas the weekends are lost and directionless. However, today we had our first planning meeting to revamp our Foundation website, and our consultants gave us assignments for the weekend. The feedback needs to be received by next week and they want us to launch the site by July 1st. I wasn't expecting such a quick turn around time, so I feel a great deal of pressure at this point, and we have a full weekend of work ahead of us. This is the issue with the Foundation in a way, it is a full time - 7 day a week job. In which I am constantly thinking, creating, and planning. If I stop doing this, then the momentum for the Foundation stops, which neither Peter nor I would ever want to see happen. 

Thursday, June 18, 2015

Thursday, June 18, 2015

Tonight's picture was taken in July of 2003. Mattie was 15 months old and in North Carolina for the first time exploring the beach and lighthouses with us. The beach was a scary notion for Mattie. He did not like the sound of the crashing waves nor did he care for the sand. He found the heat and texture of the sand just awful on his feet and therefore really refused to go onto the beach after his first day's visit. But I loved lighthouses and therefore wanted to introduce Mattie to them early on in his life. Which we did, and despite the heat, Mattie climbed up Corolla's Lighthouse on Peter's back (in a backpack). Pictured behind Mattie and me is Bodie Light, which is another lighthouse in the Outer Banks..... one that wasn't opened to visitors back then, but is now opened for people to climb to the top!


Quote of day: Friendship is unnecessary, like philosophy, like art.... It has no survival value; rather it is one of those things which give value to survival. ~  C.S. Lewis

Today I picked up a large donation of toiletry items for the free snack/item cart that we run at the MedStar Georgetown University Hospital. The items were collected by the Westminster School (Annandale, VA), specifically the Builders Club at the School. This is the second year in a row that the School has contributed to our April item drive. 



One of our supporter's has a child, Garrett, who graduated from Westminster and that is how we got connected to this School. In fact, Garrett's sister and Mattie went to preschool together. So in many ways the connections we made in preschool, remain with us today, and it all started in Margaret's classroom. As I used to joke with Margaret all the time..... it wasn't only Mattie who made friends in preschool. Because for many of us moms, Margaret's classroom was very important for us. It set the right tone and environment for all of us to network with one another. A connection that remains ten years later! In a way it is hard to accept that these connections have outlived Mattie and Margaret. 

In the collection I picked up today are the following items:

93 toothbrushes

67 toothpastes

312 k-cups

38 boxes of band-aids

24 deodorants

36 shampoos

20 conditioners

42 lotions

13 dental flosses

6 hand sanitizers

12 body washes

10 mouthwashes

21 bars of soap

9 travel packs

We thank the Westminster School, because I know these items will make many in-patient families caring for their children who have long-term, chronic, and/or life threatening illnesses very happy to receive them. In many cases, when rushing to take a child to the hospital, a family member forgets one of the items listed above! Therefore, having access to these items for free is a special gift, it makes people feel cared about, when their family is in crisis.  

Wednesday, June 17, 2015

Wednesday, June 17, 2015


Tonight's picture was taken in June of 2003. Mattie was 14 months old and we were visiting Great Falls Park. As you can see he was very intrigued by this Canadian Goose. Mattie loved birds and ducks and understood that they were not something that should be chased. This goose was equally fascinated by Mattie and was waddling over to say hello. I remember this moment and found it so adorable that I reached for my camera to capture it! 







Quote of the day: Somewhere we know that without silence words lose their meaning, that without listening speaking no longer heals, that without distance closeness cannot cure. ~ Henri Nouwen


I spent the entire day working on our Foundation's upcoming June newsletter, which will feature our Walk photos and information about our Walk results. This has been a real labor of love. A labor which has taken many weeks, just to get to this point. Because we had a lot of digging out to do post-walk and a lot to organize and make sense out of in order to report some facts. But the newsletter is slowly coming along. I am taking on other big projects this summer like redoing our Foundation brochure, which has to be ready for the July conference, and the even larger task of revamping our entire Foundation website. That requires training, which I am going for on Friday. I am not technologically savvy, so designing a website should be a pip. But since I designed the Walk website from the ground up, I feel slightly more confident, that I can take on this project. However, the overall Foundation website needs a whole new and modern look and our lobbyist's company is consulting with us on this project. I tend to write and be wordy and websites today need to tell a story ALL through photos and graphics. So I will need a lot of help! 

Tuesday, June 16, 2015

Tuesday, June 16, 2015 -- Mattie died 301 weeks ago today.

Tonight's picture was taken in June of 2003. Mattie was 14 months old and he was full of energy. Mattie loved his foam letters, which he was sitting on. It was actually like a huge puzzle that served as a mat. Sometimes Mattie would totally disassemble the mat, toss the pieces around, incorporate them in his play and then eventually re-assemble the puzzle mat back together. 


Quote of the day: Listening is a magnetic and strange thing, a creative force. The friends who listen to us are the ones we move toward. When we are listened to, it creates us, makes us unfold and expand. ~  Shel Silverstein


The theme for the week, and mind you it is ONLY Tuesday, seems to be..... what happens when life gives you things that you hadn't expected and planned for? I see this theme playing out not only with Peter and me, but in several of the people and close friends I know. It leaves us in an existential quandary. Now one could say that part of this is developmental.... it is our stage in life. Perhaps! But on the other hand in each situation, each one of us is touched by grief, illness and/or a trauma. Such aspects have changed our lives, how we feel about ourselves, how we relate to others, and worse the trajectory of our future. The irony is these are not simple conversations to have and you can't just have them with anyone. But out of the blue today I had a friend approach me who needed a listening ear. This is someone I do not know well, but as I began listening to her, I realized..... I could totally understand what she was talking about. Because at the at the heart of the matter she was talking about disappointments, giving 100% to others and not getting that in return, and feeling abandoned by certain friends. What it comes down to is, one is never too old to learn about friendships and how to balance expectations that we have for others, while staying true to our own character, values, and what defines us and makes us special. Of course when deeply upset with those we are close to, it at times is a natural instinct to protect ourselves and just walk away. Yet, to me, if a friendship is worth anything, then it is worth the dialogue and process of working through the conflict that can arise from disagreements and misunderstandings. It is worth the effort to try to communicate and express one's feelings to make the relationship stronger and to be clear about one's needs and expectations. Though I am very aware that it takes two people to work on a friendship and sometimes such expectations and the desire to do this are not shared. Therefore this is when relationships need to be re-assessed, evaluated, and determined as to what extent they will play in our lives moving forward. So part one of this week's running theme is .....what happens when the friends we thought would always be there are no longer there? 

Part II's theme is somewhat related to Part I, but Part II can also stand on its own merit. The issue is the isolation, sadness, and depression that evolves from feeling different. We all have a set notion of what our life will look like as we are growing up, and as we age, if it doesn't go down this imagined path, this can really be disillusioning. One may think one's destiny is under one's control, but in all reality that truly isn't how it works. A great deal has to do with happenstance and luck. Of course when bad and difficult things happen to us or in those around us, it takes great strength not to completely shut down, block out the world, be bitter, angry, and jealous. Naturally there are times all of these things do happen, and frankly that is okay! I am not sure how they couldn't unless we had super human powers. Yet what does take super human powers is finding our way through this muck, through the despair, and finding hope and meaning again to manage through the next day. Which helps us through the next week and month. Until the next low starts the cycle all over again.  

Monday, June 15, 2015

Monday, June 15, 2015

Tonight's picture was taken in June of 2003. I took Mattie to the Reston Zoo, which has a wonderful petting zoo for children that Mattie loved! It was small, cozy, and very hands on. All perfect for Mattie. One of the animals Mattie enjoyed visiting was the sheep... it always was an adorable encounter. 


Quote of the day: One looks back with appreciation to the brilliant teachers, but with gratitude to those who touched our human feelings. The curriculum is so much necessary raw material, but warmth is the vital element for the growing plant and for the soul of the child. ~ Carl Jung

Peter and I attended the Alliance for Childhood Cancer's Action Day on Capitol Hill today. It was a full day of lobbying training for family advocates from all over the Country. 

Soon after Mattie died, Peter and I participated in this type of event in the Spring of 2010. Which is how we began to lobby in the childhood cancer space. The following year, I continued to participate and met my fellow advocate and friend, Annie. Annie lost her daughter to cancer and we immediately gravitated to each other back then. Now four years later we are still friends, we connect with each other whenever Annie comes to DC (since she lives in Southern VA) and we sat next to one another today discussing issues. 

Peter and I truly enjoyed Annie's company...... sharing thoughts, ideas, and feelings about the sessions! I snapped a photo of one of the pages in the program which clearly lists Mattie Miracle as a partner organization of the Alliance. 

Mattie Miracle sponsored the Children's Activities at the conference. Since families come from all over the Country for this training and they have their children in tow, the children need something that can occupy them for seven hours while their parents are in training. A room is set up with all sorts of arts, crafts, games, books, and videos to keep children 6-12 years of age occupied. I had an opportunity to volunteer in this room for two hours today and I have to say it was one of the positive (and of course bittersweet) experiences of the conference for me. 

The sign outside the Children's Activity Room!

This was a photo of the group during the morning, as we were united for advocacy training to learn about our call to action.... which was to ask Congress for two things: 1) support $33 billion for the National Institutes of Health (NIH), including $5.4 billion for the National Cancer Institute (NCI) 

Research funded by the NCI has played a role in every major advance related to cancer prevention, detection, and treatment, as well as contributing to breakthroughs for many other diseases. Progress for childhood cancers is even more dependent on NCI funding. In addition, the NCI provides children with cancer access to clinical trials and care at NIH-supported research hospitals. While there have been remarkable advancements in lowering mortality rates for some childhood cancers, the rates for other childhood cancers remain stubbornly unchanged and even have increased over the past ten years. Given the private investment in pediatric cancer research is extremely limited, it is imperative that the NIH and NCI continue to work for new treatments and ultimately, a cure for childhood cancers. 

2) To co-sponsor the Childhood Cancer Survivorship Treatment, Access, and Research (STAR) Act of 2015. The STAR Act would improve efforts to identify and track childhood cancer incidences, improve the quality of life for childhood cancer survivors, ensure publicly accessible expanded access policies that provide hope for patients who have run out of options, and identify opportunities to expand the research of therapeutics necessary to treat the 15,780 children diagnosed with cancer in the U.S. every year.  

My faithful readers my recall that I began working with the Alliance on their round table legislation work in the Fall of 2014. This work continued into the spring of 2015. The end result of the work is what helped to generate the STAR Act. So it very meaningful to be a part of a process of watching how this has unfolded within the cancer community from brainstorming, work groups, to now an introduced Act with sponsors. 

Representative Michael McCaul, came to address the crowd today, as one of the Star Act Sponsors. He received a standing ovation for being a champion on the Hill for childhood cancer!

The children in the activity room worked on a "thank you" sign for Representative McCaul! It is hard to see the sign based on the angle where I was standing. But trust me the banner says..... THANK YOU!










One of the highlights of my day was working in the children's activity room. I suppose that seems like a rather odd statement from a mom who lost an only child to cancer. Most likely many people would think I would be running in the other direction from small children. This room was open for seven hours, and I only worked in the room the last 2.5 hours of the day. So by the time I got to the children they were already wired, tired, and ready for the day to be over. Since I was coming into their space, I had to get to know them, their personalities, as well as understand what kind of style the other adults had in the room (since there were two others in there with me, and one who had been in there the entire seven hours!). 

Pretty early on, I noticed two young boys because of their style of playing. I was entertaining a two year old on the floor, and one of these boys came up to me and was pretending to throw a ball into my face. He made this motion several times at me. I did not move, nor did I scream, I just told him that his actions weren't appreciated. So he moved on, but I made a mental note out of it. Later on, I caught this same boy playing with the second boy, but this time they got a hold of a hand full of ballpoint pens and were poking each other with the pens. The other adults did not seem to have a problem with it, but I most definitely did. I put up with the rest of their rough housing, but poking with pens was my limit. So I finally went over to the boy who tried to hit me with a ball and I asked him what his plan was? What was going on with the pens and that I did not think this was a great game to play. He gave me some explanation, but I basically said..... NO, play with something else. They complied. Minutes later more rough housing went on and the boy who tried to hit me with a ball came running over to me to show me that his plastic name tag ripped off his lanyard ribbon. I am not sure how he thought I was going to react to that, but he seemed upset. I told him he did not do that on purpose and that there are always ways of fixing things. Of course there was no tape in the room! But I started thinking outside the box..... and took him to the sticker table. I told him to pick out two of his favorite stickers and he did. I put a sticker on each side of the hole, covered up the problem, and fixed the lanyard. He was thrilled, but then I saw his name. It was Matthew. I told him, he had a beautiful name, and between fixing his name tag and telling him I like his name, I made an instant friend. That was my first buddy.

My second buddy was a bit more complicated. My second buddy, was playing with Matthew and two older girls in the room. They were playing some sort of defending a castle game underneath the tables in the room. The tables served as the castle. The problem was some kids were allowed in the castle and my second buddy wasn't allowed in, which caused hurt feelings. In addition to that, the way that the children defended the castle seemed to scare and bother my buddy and as he said "it was too violent." I had to break up their arguments several times, but the last straw was when I found this little fellow sitting silent and ready to break down in tears. I knew that sign very well. I knew it well because this child reminded me greatly of Mattie. It was his nuances, how he expressed himself, his insights about others, and his sensitivities. I could actually predict what was going to happen before it would happen, and that is only because it was as if I lived the scene before with Mattie. It was a very surreal scenario. In any case, as he was getting upset, I caught him. I said to him, to stop and use his words and tell me what was going on. So he proceeded to tell me, and it involved the girl under the table. So I had her listen to him as well, since what he was saying was making perfect sense. He wanted to play, but he did not want to play so "violently (his words)". She kept telling him that was the nature of the game, because it was a war game, but I tried reasoning with her especially since she was twice his age and he clearly looked up to her and wanted to play with her. I was looking for her to come up with other solutions or a compromise. But she wouldn't. Which only further frustrated my buddy. At which point, he literally bolted from the children's activity room into the hallway of the hotel. None of the other adults were mobilizing forces, but I ran after him. I got a hold of him and asked him where he was going, MIND YOU HE WAS ONLY 6! He told me he was going to get on the elevator and go to his hotel room. Of course he did not have a key to get into the room, so that wasn't realistic. He was just upset.

One of the other adults who had been in the room all day with him, suggested I bring him back to his parents who were in training in the room next door. But I frankly did not think that was a good idea given the state he was in, and instead decided to try to talk with him and work it out. I was able to convince him to come back into the Children's Activity room, to calm down, and as we continued to talk, I told him that I understood he was upset, frustrated at his friends, but at the same time I was impressed with him. Instead of pushing them, fighting, or saying bad words, he was able to use his words and talk through his thoughts and feelings with them and with me. I said I was proud of him and that he gets a high five. Which he liked and smiled. With that, Matthew came over and I asked Matthew and my second buddy, Scott, whether they would like to play together? Which is what eventually happened. 

At the end of the day when parents came to pick their children up, I want you to know that both Matthew and Scott, out of their own will both came up to me to thank me for being a part of their afternoon with them. Matthew even shook my hand and wished me a good rest of the day. Naturally this experience made me very happy because I enjoy nurturing children, but on the other hand it also made me deeply sad because the reason why I have the skills that I developed was because I had Mattie. Mattie was my best teacher and though my skills and insights remain, his absence continues to leave a very large chasm in my life that other things don't fill.  

Sunday, June 14, 2015

Sunday, June 14, 2015

Tonight's picture was taken in June of 2003. Mattie was a year old and we took him to Great Falls that weekend. Mattie loved traveling around on Peter's back. In fact, I think this is how he spent the first two years of his life, if he wasn't in my arms. Mattie loved being up high and having the bird's eye view. But he most definitely did not like the feeling of being in a stroller or strapped into his car seat. He needed his feet dangling and his hands and arms free.  


Quote of the day: When the Sun of compassion arises, darkness evaporates and the singing birds come from nowhere. ~ Amit Ray


We seem to have two extremes in Washington, DC.... cold and hot! We had no in between this year and we certainly did not have a spring. We are having the hottest June on the record, and it feels more like July. The heat and humidity are intense and I practically can't keep up with keeping my flowers watered and looking healthy. They are constantly wilting! However in the midst of these temperatures, our birds are fluttering about and singing. I do not feed the birds in the spring and summer, but my neighbor has decided he wants to continue my tradition in the warm weather months. So the birds are not complaining. They are used to coming to my feeders, so we have a lot of activity about and we recently bought a bird bath, which they are now taking to like a duck to water! All I can say is prior to us feeding the birds, rarely did we hear birds singing or even hear birds at any time of day. Other than a pigeon. But we no longer have pigeons, thankfully, and have moved onto sparrows, blue jays, cardinals, grackles, and even red and gold finches! 

It is hard to believe after the year we have had with Mattie Miracle that there is still more ahead of us this summer. Tomorrow we are involved in the Alliance for Childhood Cancer's Action Days and then later in July, we are hosting a symposium at an International conference in DC, along with having an exhibit table at that conference. I will be working six hours tomorrow at the Action Days. Action Days, provide a format for over 300 family advocates around the Country to come to DC to be trained on childhood cancer policy and lobbying issues. These advocates get policy training for a full day, and then the next day they visit Capitol Hill and talk with staffers about these issues as well as tell their story and experiences with childhood cancer. This helps staffers not only see a concerted and unified effort, but also understand that these issues are very real for our community. Mattie Miracle began an associate member of the Alliance for Childhood Cancer this spring and is a proud sponsor of Action Days this year. For more information about Action Days, go to:

http://www.allianceforchildhoodcancer.org/join-us/action-days-2015.html