Saturday, March 5, 2016

Saturday, March 5, 2016

Tonight's picture was taken in March of 2004. That day we took Mattie to the Children's Museum in DC! At the time it was a rather decrepit   place, but it was small enough for a little one to be stimulated and engaged in. The museum had a display of vehicles, including a motorcycle and big red firetruck. Though Mattie may have been with Peter on the motorcycle, he was very much focused on the big red truck right next to them!



Quote of the day: Sensitive people feel so deeply they often have to retreat from the world, in order to dig beneath the layers of pain to find their faith and courage. ~ Shannon L. Alder


Last night Peter and I ventured back to Mattie's school to attend their musical production of Beauty of Beast. Peter and I both love musicals and I attribute our participation in our college choir as the reason we met each other. Music connected us at a very young age. As the years have gone by and of course we have been forced to face life's greatest tragedy of losing a child, we still turn to music. 

Yet attending any production at Mattie's school is fraught with all sorts of issues. It truly is a catch 22. Do you go or not go when invited? If you don't go, you may miss out on connecting with others, seeing live theatre, and basically engaging with the world. Yet attending always comes with consequences. Returning to a school where Mattie once was is challenging at best. Sure you may think of the typical reasons for why this maybe the case..... the physical environment may remind us of Mattie, it is hard to be around healthy children who are growing and thriving, and knowing that Mattie never had a chance to go to school beyond kindergarten. Certainly all of these things could set one off, but this wasn't the main reason Peter and I came home in a funk last night. 

The main reason is two fold. Returning to school is hard because this is now a community that neither remembers us or Mattie. To the majority of people, Mattie means NOTHING, nor do we. We are true outsiders and our child is forgotten. It almost feels like we are walking ghosts among people who know each other. We can see everyone, but no one sees us. The second part is we are no longer parents and it is hard to understand from time to time what is our identity? After all, we were parents for seven years, and then because of cancer, we lost this role and title. Overall last night was very startling, humbling, and a harsh reality (faced once again!). A reminder that we live in this world, but at the same time are not a part of this world. 

I am sure all of this is hard to understand, or maybe it isn't. If I did not have a friend or two to confide in, who have also lost children to cancer, I would think that something was profoundly wrong with me. But the sentiment and feelings we have are WELL understood and felt among my friends. It is understood because we are part of a unique culture, that speaks its own language, and has its own rituals and ways of coping with the world. So the question is.... what would I do if invited again? I don't know, but despite that feeling, I can appreciate the fact that I heard live music. Which to me is important and an art form worth supporting. 

Friday, March 4, 2016

Friday, March 4, 2016

Tonight's video is priceless. It was taken in February of 2009. Mattie and Katie, his nurse, were reciting the Three Little Pigs. In fact, this whole story was so popular with Mattie, that one weekend Mattie, Katie, Brandon (Mattie's best buddy) and a hospital volunteer did a play production of it in the child life playroom! Peter captured parts of the play on video too. 


Quote of the day: Highly sensitive people are too often perceived as weaklings or damaged goods. To feel intensely is not a symptom of weakness, it is the trademark of the truly alive and compassionate. It is not the empath who is broken, it is society that has become dysfunctional and emotionally disabled. There is no shame in expressing your authentic feelings. Those who are at times described as being a 'hot mess' or having 'too many issues' are the very fabric of what keeps the dream alive for a more caring, humane world. Never be ashamed to let your tears shine a light in this world. ~ Anthon St. Maarten

Yesterday Peter and I participated in an interview by phone with the host (Janet Demeter) of the Childhood Cancer Radio show based in California. Janet is a fellow bereaved parents and runs a Foundation to help find better treatments for brain cancer. Her son Jack died from this disease and her radio shows provides a way for messages and cutting edge ideas to reach the public and other interested childhood cancer advocates. Janet sent us the link below. If you click on it, an audio file will download and open up for you to listen to. The entire interview was an hour long and it covers a lot of territory. 

Mattie Miracle on the Childhood Cancer Radio show:

 bit.ly/CCTR3-3

Thursday, March 3, 2016

Thursday, March 3, 2016

Tonight, I decided to post a video of Mattie. I captured this video in December of 2007. Mattie was headed that day to Lessons and Carols, a holiday event at his school. For this occasion he had to dress up in a jacket and tie. Which was an experience in and of itself. Since Mattie typically did not like anything tight around his neck. But he looked adorable in his snowflake tie! The song Mattie was singing in front of our Christmas Tree, was the song his class was performing that day in front of the school. I worked with Mattie over time, so he memorized all the lyrics. I think I still know them today! 


Quote of the day: The worst part of holding the memories is not the pain. It's the loneliness of it. Memories need to be shared. ~ Lois Lowry


There was a lot going on today. At 4pm, Peter and I were interviewed by Janet Detmeter (http://toginet.com/shows/childhoodcancertalkradio) for an hour. Janet hosts a talk radio show in California and wanted to highlight the Foundation and our psychosocial mission. Janet lost her son to DIPG (a form of brain cancer, which is an automatic death sentence, since there are no effective treatments for this disease). Janet started her own foundation and the foundation runs a childhood cancer talk radio show. When the podcast goes live, we will post it. But it was a good interview, despite Peter and I being in two different locations while taping it!

Peter was contacted today by Cox cable. They want to interview him tomorrow about his position on pain medications for children with life threatening illnesses. This is a controversial topic that is being debated within the FDA, because there are two camps on this. Those who do not want to give children access to potentially addictive pain meds, and the other camp, which is dealing with life threatening illnesses that really require such medications. Peter and I opt for access to these drugs for children. Of course we understand the complexity of the issue but also witnessed excruciating pain in Mattie and we learned first hand the importance to having access to these medications. Pain medications aren't distributed or administered in a haphazard or unethical manner. Instead, we relied on consultation with doctors, Mattie's overall care team, reports from Mattie, and our own instincts. When a child is in severe pain and/or dying, withholding such drugs can be devastating and have lasting consequences on the families left behind. 

The broadcaster asked us for photos of Mattie, NO PROBLEM, and video clips.... well that is MORE of a problem. Mainly because in Mattie's day and age, we used the old fashioned video recorder. Accessing those videos and transmitting them is MUCH harder. Yet as Mattie got older, I started using my digital camera to record videos. So the videos below are the ones I sent along today! I tend NOT to look at videos for the most part. I am not sure why. Perhaps they make the reality even more REAL. But they do give you a better perspective of Mattie.............

Mattie received this wonderful musical birthday card while in the hospital. This was taken in April 2009, Mattie's 7th and last birthday with us. 

In September of 2008, a month into treatment, several of Mattie's school friends came to visit him in the hospital. This was before Mattie lost his hair and his ability to walk. So friends were less threatened to visit him. Linda, Mattie's child life specialist, set up a place in the hallway for kids to blow bubbles together. DOING an activity helped to normalize a very abnormal environment for the children. 

I took this video in September of 2008. This was an impromptu piano playing session. Mattie just went over the piano and started to play, and create his own piece. You will notice while playing the piano the phone rang, and Mattie encouraged me to answer it.

This was what a typical physical therapy session looked like with Mattie. His therapist, Anna, knew that she had to think outside the box when it came to getting Mattie motivated to move. Mainly because Mattie wasn't feeling well and was in pain. But Mattie really pushed Anna, and Anna always rose to the occasion. This was one of Mattie's physical therapy conga lines in February of 2009. 

Last but not least.... this was a video of Mattie and his adventures with Speedy Red. My parents bought Mattie Speedy Red, because this was in essence his last wish. Mattie always wanted a ride on vehicle when he was well. I never allowed Mattie to have such a car because I felt it was too expensive and believed he would quickly get tired of playing with it.  Yet when Mattie was dying, your thought process and priorities as a parent get transformed. Speedy Red brought Mattie many days of joy. Despite having to ride it with oxygen and a pain pump. Mattie took to driving like a duck to water. I rode in the car initially with him to make sure he knew how to use the brake and gas pedal, but he caught on fast! 

Wednesday, March 2, 2016

Wednesday, March 2, 2016

Tonight's picture was taken in August of 2008. Mattie was in his first month of chemotherapy, which was why he still had his hair. I remember this moment in time like it were yesterday. We were all in shock over Mattie's diagnosis. To help us acclimate to the clinic, Mattie's art therapists got us involved in painting a ceiling tile of the clinic. They knew Mattie loved Scooby Doo, so they sketched a Scooby Doo scene on the tile, and as a family we began to paint in the tile. It took us multiple visits to complete it, but while painting we forgot our worries for a bit of time. So it was then I realized how therapeutic art really is. This tile remained at Georgetown Hospital for the past six years. Now all the tiles are coming down and I either have to claim all of Mattie's tiles or they get thrown away. I have many feelings about the way the Hospital has handled the dismantling of the tiles and how this was conveyed to families. But I can elaborate on that in another post. 


Quote of the day: Painting is the silence of thought and the music of sight. ~ Orhan Pamuk

Last night my friend Ilona, a fellow bereaved mom of an only child, invited me to something called "Paint Nite." This event is held all over the Country, so literally you can sign up to paint anywhere. The events typically take place at a restaurant or bar and it is designed to be a fun way to gather with people and learn to paint. When you sign up on line, you can chose which scene or subject matter you want to paint. Each "paint nite" paints a different scene. Last night's scene was called Mystical Moon. So it is no surprise that I wanted to participate in last night's event. Ilona gave me different nights to select from, but the moon picture resonated with me and I figured if I am going to try "paint nite" I might as well select something I want to paint. 

Paint Nite is hosted by a local artist who literally walks you step by step through the painting process. She shows you how to prepare your canvas for painting and then over the course of the evening walks you through each step of the process until you have completed your painting. Because it is a social experience, the company also takes photos of you while you are working. So I have photos from the beginning to the end of the session and the company even posts the photos on Facebook. 

I honestly have NO IDEA how to paint, but with instruction and no pressure it helps tremendously. Unlike in an art class, no one is judging or commenting on your work. So literally you can just create and get absorbed in the moment. 

For two hours I was glued to my canvas, trying to figure out how to do what was being conveyed to us. It was like a mental escape in a way, because the whole time I was there I wasn't thinking of anything else. So that alone is therapeutic. 

I am so happy there was no one next to me because I literally took over my space and my neighbor's space, not to mention supplies! Paint Nite provides the canvas and all the supplies!

The final product, which I entitled "Mattie Moon." In the photo is my friend Ilona and the woman in the center is Kara, the teacher. 

Me, Ilona and Ilona's friend, Jennifer. Even though we were painting the SAME subject matter, you can see each painting is unique. 

A close up of Mattie Moon!

Tuesday, March 1, 2016

Tuesday, March 1, 2016 -- Mattie died 337 weeks ago today.

Tonight's picture was taken in March of 2007. We were in Key West, FL for spring break and along our journey we stopped for lunch. Outside the restaurant was this station wagon with the license plate, "shrimpy." Naturally since it had a large shrimp attached to its roof. Peter's parents snapped this photo of us, and check out Mattie with a paper towel tube on top of his head. The car had a shrimp, and Mattie had a tube!



Quote of the day: Oh, my friend, it’s not what they take away from you that counts – it’s what you do with what you have left. ~ Hubert Humphrey

This morning I was out doing chores and landed up in the Hallmark store. Which is one of my favorite places to go. In any case, my perpetual complaint about Hallmark was that they never had cards to address the loss of a child. 

We can all identify with some sort of occasion covered at Hallmark. Such as birthdays, anniversaries, marriages, birth of a baby, graduation, and sympathy. However, this is the first time that I saw cards about the loss of a daughter or son. I was so stunned that I actually photographed what I saw. 

I have to say that this is a very needed and welcomed product line because it gives people in our lives the opportunity to acknowledge such a loss. Hallmark has made child loss in a way okay to talk about, rather than not address it at all. Which of course only compounds the isolation and frustration bereaved parents feel. 

I went for my follow up appointment with my neurologist today. I have been working with this doctor since Mattie died. In any case, I was telling him about my experience undergoing the EMG/Nerve Conduction Test in his office. I told him it was manageable because of the people administering the test. Both the technician and other neurologist were very person centered. They really connected with you, relieved any sort of stress you had about the test and prepared you along the way. I was telling my neurologist that I enjoyed talking to his colleague and getting to know him. I mentioned that his colleague and I have similar concerns about our health. With that my neurologist stated that his colleague should not talk about his personal concerns in an appointment. Mind you what the doctor talked to me about was actually very beneficial for me to hear and helped to normalize my fears and anxiety. So in essence not only did I appreciate connecting with him, but I felt that the interaction was therapeutic. 

But my doctor doesn't share this notion of connecting on a human level. Which is interesting and sad at the same time. After all, if you don't connect with the person in front of you, how likely are they to give you the FULL picture of what is bothering them?! I did not get into my perspective with my neurologist because I did not want to compare him with his colleague nor reveal anymore than I had (which were generalities) about his colleague. Nonetheless I find it ironic, odd, and hysterical that here are two doctors working in the same office with each other and the two of them know nothing about each other. I think that speaks volumes! 

Monday, February 29, 2016

Monday, February 29, 2016

Tonight's picture was taken in March of 2003. Mattie was 11 months old and it was his first plane trip ever. We took Mattie to Los Angeles because I had a professional conference to attend there and my parents were going to spend time with Mattie while I went for the day. I snapped this photo of Mattie. I happen to love it! You can see his excitement over the camera.... he was going to reach out and grab it from me. 


Quote of the day: Never forget what you are, for surely the world will not. Make it your strength. Then it can never be your weakness. Armour yourself in it, and it will never be used to hurt you. ~ George R.R. Martin


Today I returned to the George Washington University. I haven't been there in YEARS. When Mattie developed cancer in 2008, I left and never returned. However, in the beginning of February, I was asked to be a reader for a dissertation and to serve on this young women's dissertation defense. Which is basically a two hour meeting in which questions are fired at the doctoral student about his/her original research. The student has to defend her study and is evaluated on her cogent answers. 

I met Elaina, the student in question, years ago. She sent me an email because she heard about me most likely from her advisor. Elaina wanted to hear about my experiences with childhood cancer and the Foundation and mentioned that she was interested in working with this population and conducting research on parents whose children have cancer. So I connected Elaina with the co-leader of our Standards project at NIH. Which is who Elaina landed up working with and also this is how Elaina captured data for her dissertation. So as Elaina said, I was meant to be on her committee from start to finish. 

I know all too well how challenging it is to capture data and it literally took me TWO YEARS to find an agency that would allow an outsider in to assess their services. So when you as a student find someone who can help you, they are a God sent. However to be honest I graduated in 2003, and I haven't really be involved in the dissertation process since then. So when Elaina asked me to do this, my first feeling was DOUBT. I wasn't sure I could do this nor sit on a committee with a bunch of academicians. However, tonight's quote swirled around in my mind..... never forget who you are! Who I am is not only a person with a doctorate, a mental health professional, but also a woman who knows first hand the impact of childhood cancer on relationships (which was the nature of this study). I am in essence a subject matter expert and no one can take that away from me. This is the final gift Mattie gave me, and I always try to do something with that gift of knowledge. 

I came into the defense today armed with many questions. What I was proud about is that my questions were unique and substantive, so much so, that Elaina's chair of her committee is asking her to add many of the points I addressed in the meeting into her dissertation. 



Today made me remember March 10, 2003. My dissertation defense day! This photo was taken after the defense, with my entire committee. The man behind me on the left with the blue tie was Don Linkowski. Don is no longer alive. He died months after his retirement from a heart attack. But Don was special to me, and I have many items of his such as his cuckoo clock which sits in my living room. On the day of my defense before Don started to ask questions, he explained that he was wearing his PANDA POWER tie to bring me luck. I will never forget that!

In a way, getting a doctorate is like surviving the LONGEST hazing process possible. I shall never forget it. But after the defense is over, your committee takes you out to lunch. Basically to begin to acknowledge that you are ONE OF THEM! This was a photo of my mom and I at this lunch. 

A photo of me with my parents at lunch. 

Peter is pictured with me and Rob. Rob was a psychologist who oversaw the employee assistance program at a governmental agency where I conducted my study. It is thanks to Rob (his insight to understand that my study could give him the data he needed to justify his division's services) that I was able to access 100 working caregivers of family members and collect data for my dissertation. I will never forget that day, because besides passing my defense, Rob offered me a great job at his agency. In the end I decided not to take it because it wouldn't have given me the flexibility to care for Mattie. Thank goodness I made that decision, because I would have had MAJOR regret now if I hadn't made Mattie my priority when he was healthy. 

Sunday, February 28, 2016

Sunday, February 28, 2016

Tonight's picture was taken in March of 2007. We took Mattie to Key West with Peter's parents for spring break. At one of the sites we went to visit there was this wonderful dinosaur model made out of found pieces of materials (for example the head of the dinosaur was made out of a boat motor). What I love about this photo was that Mattie was doing his interpretation of a dinosaur! 


Quote of the day: When someone would mistreat, misinform, misuse, misguide, mishandle, mislead… or any other "mis"… to others, they’re obviously missing something from their lives. ~ Donald L. Hicks

Today we drove to Annapolis, Maryland which is about 45 minutes from DC. We haven't visited the state capital of Maryland in at least 14 years. In fact, we never took Mattie to Annapolis. We were on a mission today since one of our researchers who lives there told us on Friday night that she needed copies of the published standards for a meeting on Monday. We figured the fastest way to get them to her was to deliver them personally. Since each publication weighs a ton, giving her ten copies would have been very costly to mail. 

It was supposed to be in the 60s today in our area, and literally everyone and his cousin was out and about. Including the sailboats!

We took several photos by the water, and I liked this pier shot right by the Chart House Restaurant. 

The sun was glorious today!

However, our drive home was deeply disturbing to me. As we were driving there was a car in front of us on the highway. As this car was driving under an overpass, I noticed something falling from the overpass/bridge. What was it? Well someone on the bridge was targeting cars and was throwing glass bottles onto the traffic on the highway. Well a glass bottle hit the car in front of us and glass went everywhere. The windshield of the car in front of us was shattered and it is lucky that the driver did not lose control of his car. Literally we were minutes away from have gotten hit ourselves. This whole scenario made me very depressed because I can't understand what joy someone would get out of hurting another person. This was premeditated and with purpose to cause damage. To me this is a sign of profound sickness and unfortunately I am seeing more and more of this rampant disregard for life all around me.