Saturday, October 13, 2018

Saturday, October 13, 2018


Tonight's picture was taken in October of 2008. Mattie was two months into treatment, but it was before his first limb salvaging surgery. Which was why Mattie was moving around like a typical child. These flag poles are near where we live. In fact, whenever I pass them now on a walk, I am immediately transported back to this moment in time. A time when Mattie was walking and loved to weave between each of the poles. 






Quote of the day: Children are not just smaller, softer adults, and the differences matter for their treatment. ~ Kurt Newman


A friend of mine sent me an article entitled, Healing children': A surgeon's take on what kids need. She heard about this doctor and his book while listening to NPR. I believe what caught her attention on the radio was that the doctor's message resonated with Mattie Miracle's mission. 

The article focuses upon a surgeon and now CEO of Children's National Medical Center in Washington, DC. When Dr. Newman was asked what types of changes he hopes to see in health care for children, he mentioned two that caught my attention. The first change, is that he hopes to see more doctors and nurses getting trained in pediatric care and the second is that he would "put more into mental and behavioral health." 

I am not quite sure what he means by putting more into behavioral health. Money, training, and/or incorporating it into comprehensive care??? As I could interpret this statement in various ways. But one thing is quite clear, doctors can't work effectively without the support of psychosocial professionals. Especially with long term, chronic or life threatening illnesses. Children in these circumstances need much more than just the medicine and in many cases when children refuse medical treatment, have tantrums, are stressed out, and the list goes on..... who deals with this? NOT the medical doctors, I assure you. 

Instead, it is the psychosocial team that is called in to intercede. But what a recent national study indicated is that psychosocial professionals are not well trained in pediatric oncology issues for example. Let's take the profession of psychology. These individuals go through doctoral programs and may specialize in pediatrics. However, in many of these cases, this professional can graduate never having worked in a pediatric oncology clinic or unit. So literally if this professional selects an oncology setting to work in, it is literally baptism by fire. Learning on the job, since rarely do psychology grad students have the opportunity for training while in school! So YES it is my hope too that psychosocial (not just doctors and nurses) professionals choose pediatrics and also have the opportunity to get specific education and training in pediatric specialties before they enter the field and work independently with patients and families.  

Healing Children': A Surgeon's Take On What Kids Need:

https://www.npr.org/sections/health-shots/2017/07/01/534884325/healing-children-a-surgeons-take-on-what-kids-need

Friday, October 12, 2018

Friday, October 12, 2018

Tonight's pictures were taken on October 10, 2009. Each item you see  was created by Mattie. Mattie was VERY prolific while hospitalized. All of these photos were taken at Mattie's celebration of life ceremony held at the Visitation School, a block away from Holy Trinity Church (where the funeral was held).  You can see a metal version of the Empire State Building. A structure Mattie built with Peter, and the kit was purchased while enduring treatment at Memorial Sloan Kettering in NYC. The black and white light house was a birthday card Mattie created for me with the help of my in-laws. It was my last birthday card from Mattie. There were foot and hand prints on display as well as the model magic birthday cake Mattie created to celebrate Peter's birthday. 

On the poster board, were all of Mattie's valentine's to me from 2009. Mattie made each of these in the child life playroom at the hospital. Next to the easel was Dr. Crazy Hair. A character Mattie brought to life one day in the clinic. In the coat pockets of the doctor, you could find Mattie's version of a stethoscope and an oyster shell (representing a patient's toe nail).

We were very lucky that two of our friends took on this project. They organized each piece, like a gallery, and created placards next to each item, providing context. They got the context from interviewing me. Many of the items you see here are still on display in our home. Mattie loved painting!

This was a photo of Mattie's Lego model of an ideal hospital room and pediatric center. Besides having more space and closets, the facility had an outdoor space and playground. Something Mattie would have liked when cooped up in a hospital room. In fact, Mattie created a story about this display, and this story remains framed in Georgetown Hospital's children's art gallery on the first floor. 


Quote of the day: Pain nourishes courage. You can't be brave if you've only had wonderful things happen to you. ~ Mary Tyler Moore


It has been a long day today, especially on days when I have a licensure board meeting. It adds to my tasks. I have asked numerous times to resign from my position since Mattie died, but basically I am told I am needed. Apparently they don't want to replace me. 

Last night, we had a dramatic change in temperature. With quite a wind storm. I can only imagine what Florida and North Carolina endured, because the whipping wind woke me up out of a deep sleep and then I couldn't go back to sleep! Sunny did not like the sound of the wind either, as he came into our room and hid in the closet. So we have gone from the the 80's yesterday to today's 60 degree weather. It is no wonder people all around me are physically ill. I was in a meeting today with people sneezing, coughing, and noses dripping. I wanted to sit with ten feet between us, but of course that wasn't possible. 

I am signing off for today because between head and hip pain, I am exhausted. 

Thursday, October 11, 2018

Thursday, October 11, 2018

This photo was taken on October 10, 2009. Nine years ago yesterday, was Mattie's funeral and celebration of life ceremony. It literally took us a month to plan Mattie's funeral and ceremony. We were so devastated, stressed out and overwhelmed. Which made decision making very difficult. We also felt that Mattie needed a well thought out acknowledgment of his life. One that could give every age group an opportunity to reflect on this loss. In this photo, you see a release of red balloons from the children who attended this celebration of life. Mattie's school truly did not know how to process this loss for his classmates, so thankfully several of my counseling students took on this project and created several special ways that were age appropriate for children to remember Mattie. Red balloons were chosen, as red was Mattie's favorite color. In addition, the children were encouraged to write a message on a piece of paper, attach it to the balloon, and then release the balloon to heaven. 


Quote of the day: Elephants have long been regarded for their ability, along with dolphins and chimpanzees, among others, to express emotion, even empathy. But their response to death remains a mystery. ~ Laura Parker


As I was waiting for my car to be serviced today, I sat down and was reading a book. Even my fiction books center around grief, loss, and processing it. I started reading Jodi Picoult's Leaving Time. What I love about Picoult's books is they are always well researched. She introduces you to provocative subject matters and in the process you are absorbed by her intriguing characters. Though Leaving Time is about a young girl's quest to find her mom who went missing over a decade ago. The mom happened to be a scientist who ran an elephant sanctuary. So in the process I am learning about the complexities of elephants. 

Picoult does a great job bringing to life the sensitivity of these grey wrinkly bodies. Elephants are known to have an incredible memory and they can pick out family members by scent even in a large crowd. But what caught my attention was her description about how elephants grieve. It is believed that mourning and grief are emotions only faced by human beings. However, research is showing that elephants not only have the capacity for strong bonds and connections but when a family member or friend dies, elephants seem to have a ritual. That involves a lot of standing around (not unlike our human wakes), they use their trunks to inspect every part of the body, and elephants do not leave the side of their dead loved one for days. 

I encourage you to watch this rare three minute video on the death of a matriarch elephant named Victoria. Watch how the elephants respond to her body and the researcher in the video mentions that elephants have ducts in their eyes that apparently tear when confronted by emotion. 

Needless to say, Picoult's book captured my attention, as I am fascinated by how people or animals grieve. I saw first hand how Patches (our cat) grieved when Mattie died. It was very clear! She was depressed. She spent most of her days on Mattie's bed, a place she never sat before. We also saw it with our resident Jack Russell Terrier, JJ. JJ would come to our doorstep and sit there after Mattie died. He also wouldn't eat for a few weeks. Not to mention that he slept with a sandal of Mattie's for quite some time. Who says ONLY humans grieve??? NOT ME.

https://news.nationalgeographic.com/2016/08/elephants-mourning-video-animal-grief/

Wednesday, October 10, 2018

Wednesday, October 10, 2018

Tonight's picture was taken in October of 2007. Mattie was five years old and was at Butler's Orchard in Maryland. Pumpkin picking was something Mattie loved to do, and it was a family tradition each year. The beauty of Butler's Orchard is that kids ride on a wagon out to the pumpkin fields. There they get to hand pick a pumpkin in the patch. I can't look at a pumpkin today, without thinking of Mattie. 

Quote of the day: Technology can be our best friend, and technology can also be the biggest party pooper of our lives. It interrupts our own story, interrupts our ability to have a thought or a daydream, to imagine something wonderful, because we're too busy bridging the walk from the cafeteria back to the office on the cell phone. ~ Steven Spielberg


When I found Spielberg's quotes today, it made me chuckle. I chuckled because there is a great deal of truth in what he was saying about the use of technology and particularly the cell phone. My cell phone addiction started when Mattie was diagnosed with cancer. Prior to that life seemed simpler. But the isolation, the stress, and living 24/7 in a hospital, made the cell phone the perfect companion. After all, the phone was always on, I could write when I was awake (which was always) and people could respond to me on their time schedule. The cell phone provides immediate connectivity, which seems so vital when trapped in a hospital. Isolated from the world and those around you.  

Yet I am no longer living in the hospital or helping Mattie manage cancer. So why am I still connected to the cell phone? I realize I am not unique, everyone is glued to a phone, however, the origin of addiction I believe is different from others around me. In a way, the phone provides me security and makes me feel safe. Mattie's cancer has altered my daily habits forever. Not only is my phone always with me, but my toiletries and makeup remain packed in bag. So if you told me right now, I had to leave my home, I would grab my bag and go. I got into that habit when Mattie had cancer, because no doubt whenever we were home a crisis would arise and we would have to be admitted right back to the hospital. Again, I don't live with such constant crises anymore, and yet my bags may say otherwise. 

I get my issues, but I am trying to understand the rest of society around me. I see people reading messages on their phone while crossing a busy street, while driving a car, and even while working. Have you ever tried to get help at a store or anywhere else for that matter, and the person you are trying to talk to is engaged with his/her phone? I find this disconcerting and wonder not only about the impact on creativity as Spielberg suggests, but what about the consequences on our attention spans, on our ability to interact face to face and make human connections, and how about the way we process and remember information? It seems to me all of this is rapidly being altered and diminished. 

Tuesday, October 9, 2018

Tuesday, October 9, 2018 -- Mattie died 473 weeks ago today. 

Tonight's picture was taken in October of 2006. This is one of my favorites of Mattie and me during a fall festival. So glad that Peter captured it. I think we were both intrigued by this HUGE white pumpkin, we decided to take a photo with it! The pumpkin was bigger than Mattie!


Quote of the day: Friendship is born at that moment when one person says to another: ‘What! You too? I thought I was the only one. ~ C.S. Lewis


I drove to Baltimore today to visit the Children's Hospital at Sinai, where Mattie Miracle has a free snack and item cart. I try to visit Sinai once a quarter. I would do it more often, but it can take me 90 minutes of commuting each way thanks to DC traffic. It is important for me to assess how the services we provide are actually working. I can get reports, which are helpful, but the true test for me is live interaction with patients and families. 

I go on hospital visits with no expectations. I feel this is vital because I remember all too well what it was like being confined in a hospital room for days on end. I truly disliked visitors and people entering into our space. Most likely because we had NO CONTROL over anything else in the hospital. I know some non-profits visit hospitals and want fanfare and cameras. The only reason I want cameras is to document to our supporters that their donations are making a difference. Nothing conveys this like a photo. 

Given some of the children and families I interacted with today, I opted not to disturb any of them with photographs. It just did not seem appropriate. However, this is the first time I pushed the Cart around and actually got several hugs from moms. They couldn't thank me enough. They said this cart is a lifesaver, it has brightened their day, and one dad basically said that it perked up his spirits. All this feedback was music to my ears! These parents confirmed what I believe..... and that is the Cart is vital in any hospital. In fact, one mom said she has been to many hospitals and NEVER experienced such a generous service anywhere else! I personally think our Carts make our hospitals look good!

I am enjoying getting to the know the child life staff at Sinai. They are incredible women, with lots of experience, compassion, energy, and commitment to their patients and families. I feel proud to support their service. While pushing the Cart today, I saw a mom by the elevators. Typically I know NO ONE at Sinai, but this is a mom who is my friend. Cathy and I met at Georgetown Hospital ten years ago, when both of our children were diagnosed. Mattie was only 6 and Bridget was about 15. 

This is a photo of Bridget and I today. I love Bridget and her entire family. They are special people. Bridget has every right to depressed, angry at the world, and a bitter person. She has been managing an aggressive cancer for a decade now. A cancer that robbed her of her teenage years and a cancer that has left her coping with significant physical issues. However, Bridget is truly remarkable, humorous, and a ray of sunshine. Honestly we all could learn a lesson or two from her! 

This is a photo of Cathy, Bridget, and myself. Another thing I love about Cathy and Bridget is their incredible bond. It reminds me of the one I had with Mattie. 

Sure parents love their children and their children love their parents, but I believe there are different levels and degrees of love and devotion. Needless to say, it is so special to be in Cathy and Bridget's presence. They understand each others needs without words. 

By the way, a while back Bridget gave me the title of "Mom #2!" I can't tell you how special that is to me. There are no words!!! 

When I left Sinai Hospital today, I had 15 large plastic bins in my trunk. It's our candy system. Post Halloween we fill all 15 bins and deliver them to the hospital. Then I pick up the bins when they are empty and refill them again in November. 

I drove from Baltimore to Alexandria today. I was motivated to unload the 15 bins from my car. Because I need access to my back seat and trunk for Sunny and other things. This is what our storage unit current looks like. Stacked with bins. Soon it will be utter chaos going on in there. 

Monday, October 8, 2018

Monday, October 9, 2018

Tonight's picture goes nicely with the one I posted last night. The photo was taken in October of 2006. Mattie was four years old and LOVED pumpkin picking. I snapped this photo of my two boys with a wheel barrow in hand to pick and collect pumpkins. Mattie was all business, but placated me with a photo before he jumped into the field. 


Quote of the day: Dogs do speak, but only to those who know how to listen. ~ Orhan Pamuk


I am not sure that I speak dog, but I do think Sunny and I understand each other. In just the last few days, each time I am out with Sunny, I have had people stop me to tell me what a beautiful dog he is. Women and men! In fact one woman told me that Sunny's eyes almost look human. I couldn't agree more. Certainly I can't talk to Sunny about Mattie, but yet Sunny understands that Mattie Miracle activities and events are important. Therefore, he needs to be patient and of course he observes my busy work. Sunny is my companion, work colleague, friend, and family member all wrapped up into one!

Switching gears, I am still reflecting on the reunion event I attended with Peter on Saturday. As I mentioned in the blog, the highlight of my evening was meeting the person sitting to the left of me at our dinner table. I had never met him before, but Peter and I struck up a conversation with him about Mattie and Mattie Miracle. When he heard that Mattie has been dead for 9 years, his response was.... life must be easier now compared to the first or second year after Mattie's death. Peter and I both answered him, NO! In many ways, the further along you are in the process of losing a child, the harder it is. He looked at us perplexed and actually wanted to hear more. 

I can't say anyone actually ever asked me this question, nor took the time for a response. I explained to him that in year one, everyone in your network is walking on eggshells around you trying to be supportive and empathetic. By year two, I distinctly remember the switch in people! I truly believe they felt if we survived the first year, the we were good to go. That we "recovered" and were able to "move on." It was within that first year people disengaged and expected us to return to business as usual. The problem was that didn't happen and instead on top of dealing with grief, we were dealing with abandonment and isolation. 

I explained to my table mate that losing an only child meant that I did not see friends frequently, friends who had children. In fact in some cases, I lost good and long term friends.... permanently! There were no more school events, pick ups and drop offs at school, there were no more academic or social milestones, and worst of all, when parents saw me some just walked the other way. I was too scary for them to manage. Now nine years later, my friends still have children and I don't. I still hear about their milestones and accomplishments, and even have to endure photographs. All things I can no longer relate to, just as much as they can't imagine or relate to my life. Holidays are NO LONGER the same, our hopes for the future have been forever altered, and let's not talk about going on vacation. Times in which families unite, but our important little one is gone. 

I have had people tell me they know how I feel because their children left home and are now in college! REALLY? Do I need to elaborate on this here??? Certainly it is a type of loss and a family adjustment, but the big difference is this is normal, natural, and part of the growing process. With the emphasis on growing and developing. In our case, we have been deprived watching this process unfold in Mattie, as completing preschool and kindergarten did not give us enough time as parents. At the end of our conversation, I think this person asking us questions felt badly that he had us revisiting our grief. However, what I told him was this is something we live with everyday. Though we may not talk about it with others, it is part of our daily life. Instead, I think people asking us about our thoughts and feelings help to make them real and tangible and in the process we are educating others about child loss. 

Sunday, October 7, 2018

Sunday, October 7, 2018

Tonight's picture was taken in October of 2006. Mattie was four years old and out pumpkin picking at Butler's  Orchard in Maryland. We took Mattie to this Orchard twice a year, in October and in April for their Easter Egg Hunt. The pumpkin picking experience was right up Mattie's alley. It involved a hay wagon ride out to a pumpkin patch and then picking your own pumpkin! We never came home with just one either. 


Quote of the day: It is no use walking anywhere to preach unless our walking is our preaching. ~ Francis of Assisi

There is something very therapeutic about walking at Roosevelt Island. I know it used to do wonders for Mattie when he was a little one. In fact, I would say Mattie was most calm and peaceful when he was outside interacting with nature. While walking on the Island today, I heard Peter reflecting about his weekend walks alone on the Island the entire first year after Mattie died. I remember Peter would get up very early and probably was on the Island by 6am. As he was unable to sleep and also it was very hard to adjust to having NO WEEKENDS with our son around. Weekends for us were a painful nightmare. Roosevelt Island serves so many purposes for us, but overall I would say it symbolizes an Island for healing. 

Along our walk today, we literally found two baby deer eating along the pathway. Sunny was VERY interested in approaching the deer. But was calm while we stopped and took photos. 

Here's the thing I observed. There were other people around us, talking and walking. But when people saw the deer, they stopped talking and walking and just took the moment in. This is what nature allows us to do as humans.... to escape and just be for a few minutes without photos and agendas. 

This wonderful monarch butterfly was sitting on the ground upside down. It was right in the middle of the pathway, and could easily be stepped upon. I picked it up with a branch and transferred to a leaf. It was still alive and hopefully now has a chance at life. 

This wonderful painted box turtle was literally crossing the pathway in front of us. Sunny did not know what to make out of it! Peter relocated this cutie into the woods, because it blended in so well with the pathway, it would be easy for others not to see it. 

There were so many wonderful sighting on the Island today, sightings that I know would have caused great excitement in Mattie.