Thursday, June 25, 2015

Thursday, June 25, 2015

Tonight's picture was taken in June of 2009. Mattie was in the HEM/ONC clinic and sitting between Brandon and Jocelyn, his two cancer buddies. Brandon and Jocelyn were really the only two people Mattie related to who were patients, which was ironic considering their age differences. But it did not matter, their friendship transcended any differences. What was going on at the art table was a whole Sponge Bob theme, as Brandon and Jocelyn knew how much Mattie loved Sponge Bob. Now I am not sure Mattie actually loved Sponge Bob, or he simply knew I disliked him and therefore enjoyed watching my reaction to hearing about the conversation!


Quote of the day: Do you not see how necessary a world of pains and troubles is to school an intelligence and make it a soul? ~ John Keats


I started the day feeling good. I went to my zumba class and went about my day. But by 5pm, the bladder pain started all over again, and I am now feeling as awful as I was yesterday morning when I woke up. So fortunately I saw my doctor yesterday and have started the medication she prescribed me. While I was commuting to her office yesterday, I was listening to this horrible story on the news about a man who went for a colonoscopy procedure in Northern Virginia. While sedated, he happened to leave his cell phone on the record mode and was recording everything that was being said about him during the procedure. Unfortunately the commentary was very defamatory, in which the doctors joked that the patient could have ebola or syphilis. None of which was true, and worse because they were annoyed with the patient, they added a false diagnosis to his medical record. I included a Washington Post article about this terrible court case below, in which the jury apparently awarded the patient, $500,000.  

I am not sure what is more upsetting about this story! But I have to say the dialogue, which you can hear for yourself, that I find most upsetting is in which one doctor says..."They (patients) need to have medical problems" and the other who says, "I call it the Northern Virginia syndrome" is disturbing on many levels! What they are implying is that patients come to them looking to be ill. I am sure there is a segment of the population for whom this is true, and there is a mental health condition to identify this! But to label all of us as either hypochondriacal or a malinger is unacceptable and highly insulting. Especially when we are coming to doctors in many cases in need of answers to symptoms we are having! I will let you read it for yourself and come to your own conclusions.

Anesthesiologist trashes sedated patient — and it ends up costing her:

http://www.washingtonpost.com/local/anesthesiologist-trashes-sedated-patient-jury-orders-her-to-pay-500000/2015/06/23/cae05c00-18f3-11e5-ab92-c75ae6ab94b5_story.html?tid=hybrid_collaborative_2_na

Wednesday, June 24, 2015

Wednesday, June 24, 2015

Tonight's picture was taken in June of 2009. Mattie was home between treatments and as you can see was experimenting with his googles that he just received. The googles had a straw attached to them and they were a clever gadget that enabled him to exercise his lungs post surgery. The googles were filled with so much milk that you could hardly see Mattie's eyes! Despite being in pain, feeling isolated, sad, and in many cases needing a lot of help holding, playing or using a gift..... Mattie was always a good sport and eagerly opened each of the gifts people from his care community sent him and was always gracious about each gift received! 


Quote of the day: Things which matter most must never be at the mercy of things which matter least. ~ Goethe

I woke up at 5am this morning not feeling well! It was the kind of pain, a pain I know well, that wakes me up out of a deep sleep. It is bladder pain. This type of pain makes it impossible to rest, sit still, or frankly think about anything else other than seeking immediate help! So I called my doctor's nurse and left her a message, because I wanted my doctor to prescribe me antibiotics. However, when you have a chronic issue you also learn to triage yourself. So I started popping things in order to function otherwise I know that this pain will make me absolutely crazy. As the morning rolled along, I also emailed my doctor who insisted I come into the office to be seen. Mind you I just saw her two weeks ago, since she is the one who ordered me that upsetting scan. But in order to get what I wanted, I know I also have to comply with her demands at times. So it works both ways. I am quite sure that if I did not self medicate on antibiotics and other things I had at home, I would not have been physically able to drive 40 minutes in traffic to her office. I wonder if doctors even think of these things?! A patient in terrible pain.... why not then have the patient drive in morning rush hour, to come to the office to give a specimen and be seen? NO PROBLEM..... sounds reasonable, no?! I don't know what part of the brain functioning is missing sometimes from the medical profession. 

If the doctor doesn't get me laughing, then her nurse practitioner had me on the floor. I left my doctor's nurse practitioner a voice mail at 5am. By the time I got home, after being seen by the doctor, the nurse called me back and left me a message. But it was the content of the message that was an absolute riot. Clearly the nurse did not listen to the actual message I left her before calling me back. That would have been step one to good patient care. She missed that step! Or she could have looked at my chart and seen that I just visited this doctor two weeks ago and had a thorough evaluation. She missed that step as well. But the final icing on the cake was when she left me a message and in the message she started talking and you could tell it was just haphazard, free flowing consciousness. She wanted me to know that I needed to come to the office today since I had symptoms and because the doctor hadn't seen me for some time, then in the next breath retracted her statement since she said..... no I see in the chart you just saw the doctor. In the second breath, she then went on to say, OH NO, I see the doctor just prescribed you something today. It was true dysfunction on the phone! To me this all could have been avoided if the nurse had taken two minutes to look up my name and check her computer screen, got her facts straight and then started speaking. It just left me with a bad feeling that people who are this scattered are overseeing my healthcare and I am reminded of a statement Jey (Mattie's CT transporter and Big Brother at Georgetown) used to say to me often. Jey would say that sometimes people working in healthcare forget why they got into the profession to begin with, but it is important to always remember that every patient means something to someone and may come into a medical setting needing support. Which is the role of the health care provider, not just to provide the care! You can see why Jey and I saw eye to eye and why Mattie related to him from the get go. 

Tuesday, June 23, 2015

Tuesday, June 23, 2015 -- Mattie died 302 weeks ago today.

Tonight's picture was taken in June of 2009. Mattie was recovering from his sternotomy, which removed nine tumors from his lungs. Part of his recovery process required him to do breathing exercises (since during surgery air sacs in the lungs can flatten and exercises help to expand the lungs back to full capacity)! Something Mattie absolutely hated! Because Mattie refused to comply with his respiratory therapist, one of his PICU nurses decided to design her own creative way for Mattie to exercise his lungs using a basin, water, straws, and a cut out of Sponge Bob! Naturally it involved me being a part of the therapy! I was so used to being Mattie's therapy partner that I gladly stepped in. The goal was to see who could blow Sponge Bob threw the water and across the finish line the fastest. It really helped having a nurse who understood Mattie and could think outside the box to get things accomplished. 




Quote of the day: Friendship is the hardest thing in the world to explain. It's not something you learn in school. But if you haven't learned the meaning of friendship, you really haven't learned anything. ~ Muhammad Ali


Recently I learned about two people who we work with through the Foundation that decided after many years of working in their current jobs that they wanted to leave their positions. I am not sure why this surprises me. On some level it surprises me and yet on the other hand, given the climate of both work environments..... I always wondered how these folks made it work for so long! But my connections with these individuals was not simply the fact that they worked for a certain place or organization. It was more about them and who they were as individuals and how we connected in our visions about childhood cancer. I have performed many roles and tasks in the course of my lifetime, but being the president of Mattie Miracle, is a very different job. It is a job and yet it is a very personal quest. Every task I do is done with a lot of thought and every connection I make with someone is not just your usual business acquaintance. If you are going to do any real and meaningful work for the Foundation, there will have to be a personal relationship established. If one doesn't want to make that investment with me and with the Foundation, then guess what? You aren't working with me! It really is that simple. It is my philosophy and a philosophy I stick with, because at the core this isn't just a job, it is a task that was given to me by Mattie. Understanding this and valuing the meaning behind the work that I do each day in a way requires the building of a friendship between people. 

So when I learned that two people we have known were leaving their jobs rather suddenly, my first thought was truly for their concern, welfare and for their health. I wanted to make sure that there wasn't something wrong that caused them this dramatic switch. Once that was established then we could discuss and strategize how these changes would impact their future and our relationship together. But the beauty of having a RELATIONSHIP with people is that once you have a strong connection and you have a meeting of the minds, it doesn't matter where they work. The minds always need to connect.... which is what will happen with our colleagues. They maybe moving professional homes, but we will remain connected and working together. So I take Muhammad Ali's quote quite seriously. Do I think you can teach people about friendship and how to be a good friend? I once thought so, now I am not so sure (that would have to be another blog posting).... but I do think that valuing a connection and nurturing it is the key to a happier and more enriching life. 

Monday, June 22, 2015

Monday, June 22, 2015

Tonight's picture was taken in June of 2009. I remember this day as if it were yesterday, and I bet if I asked Peter if he recalls this day, he would too! It wasn't so much the fact that we took Mattie to see a Nationals baseball game, but it was what happened while pushing his wheelchair through the Park that was memorable. We had a ton of people staring at us and truly looking at Mattie as if he was odd and had four heads.... rather than having compassion and understanding! The only lovely person we met that day was a man from the Army who was giving out free t-shirts. The slogan on the t-shirt was.... Army Strong. He came over to Mattie and he said that he thought Mattie deserved this shirt. It was a lovely gesture and it meant a lot to me. After Mattie's death, Peter wore that shirt for many years to come. 


Quote of the day: Nobody realizes that some people expend tremendous energy merely to be normal. ~ Albert Camus


It has been a long day today of working and running around. I feel like I can now say I have officially wrapped up the Foundation's Walk, as I have just finished writing the June newsletter which reports out the results of the Walk. It is a wonderful feeling to have that behind me. But Monday, Post-Father's Day is always challenging. Actually a Monday, post any holiday is hard. Not that holidays themselves aren't hard, they are, but we brace ourselves for them and then when they are over, the feelings from them seem compounded. So Camus' quote really hit me tonight. Because I agree with his notion, as if he thought of someone who was grieving when he wrote it. To appear normal and to fit within society, after losing a child, requires great strength and it does require a great expenditure of energy. 

Sunday, June 21, 2015

Sunday, June 21, 2015

Tonight's picture was taken on June 21, 2009, Peter's last Father's Day with Mattie. This photo was taken in the hospital's garden. We took Mattie outside for some fresh air that day and while strolling about, we passed the medical school's library. Outside the library are these huge garden stones. Mattie happened to love these stones and always wanted to take one back to his room with him each time we went out to the gardens. That day he was very insistent about taking a stone. If you knew Mattie, then you knew any time we went for a walk when he was well, he always came back from one of our adventures with either a stick or a rock. Given Mattie's battle with cancer, I figured that taking one stone would be okay, given that I knew it would make him happy. This stone remains with us today and we use it by our front door as you will see below. It is our memento of Father's Day 2009, and perhaps Mattie knew that we would need in the future this physical symbol to help us remember and capture that moment in time.


Quote of the day: A Father is neither an anchor to hold us back, nor a sail to take us there, but a guiding light whose love shows us the way. ~ Anonymous

On June 15, 2009, Mattie underwent a sternotomy to remove 9 tumors in his lungs. Four days later, Mattie decided he wanted to give Peter his Father's Day gift to Peter.... three days early! Mattie hand made this gift for Peter and he was very excited to give him the gift! I think this is noteworthy, given the fact that Mattie was recovering from a major surgery. You can see the fact that Mattie's chest was cut open in half. 

Here was a photo of the opened gift! Mattie constructed a boat for Peter out of a cardboard box! Literally there was nothing Mattie couldn't make out of a regular packing box! 

A photo of Mattie's Father's Day stone, which we still have by our front door!

Our day had a rough start, but I have come to the conclusion that Facebook has one good purpose.... it helped Peter get feedback and support today on Father's Day. Which is needed, because the worst thing about holidays for a grieving parent is to be forgotten. 

I have been so upset with Facebook, as they have shut down our Foundation's profile page, forcing our profile and fan pages to merge. But in the process of this happening, Peter established his own personal profile page in order to manage our Foundation page. But now Peter uses his personal page on Facebook to post his thoughts and feelings about Mattie. In a way, it is like his blog. Today he received many wonderful comments to the posting of the photo above, which I am very happy about, because typically people do not reach out to Peter. Mattie may not have been physically with us today...... but today, like everyday, he was remembered in our hearts and is with us in spirit and in everything we do. 

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.