Saturday, January 23, 2016

Saturday, January 23, 2016



Tonight's picture was taken in March 2007. We had a bit of a snow fall and with that Mattie went outside onto our deck to create! Mattie made snow castles with whatever snow was on our deck. Just like Mattie did at the beach, he topped these castles with something found in nature. In this case, rocks! Mattie always loved to decorate his castles. It was like his signature theme!








Quote of the day: As I walk through the redwood trees, my sneakers sopping up days of rain, I wonder why bereaved people even bother with mourning clothes, when grief itself provides such an unmistakable wardrobe.  ~ Jandy Nelson

The snow is just relentless! Throughout the night the staff within our complex were outside and shoveling and snow blowing. They were actual God sents. Typically they do not shovel our deck, but if they hadn't we would never have gotten out of our door! We thanked many of them today and they said they are getting a kick out of us and the fun we are having with the snow. They can see we are taking photos and walking all over the place. Because they are worrying about snow clean up, we can actually experience the snow and the sights around us. 

This is a view of our balcony which faces Route 66. This major highway is in white out conditions. The snow plows just can't keep up with this! Not just one snow plow goes by.... try 8 at a time, as one passes, then there is another right behind it! 

This is Route 66! You can't see any of the buildings in the background because of the snow conditions. It is almost 6pm and it is STILL snowing. 

This morning we took a walk to 23rd Street. Typically this is a major thorough fare. But look at it now.... a ghost town!!! My red umbrella served its role, but it was getting blown in the wind, as was I. 

This is still 23rd Street, but what I loved about this is I saw other people using umbrellas. I am NOT the only one. 

This was the running joke on Facebook. People couldn't believe that Peter shovels snow in shorts! So I photographed him in action as proof. 

Peter jumped in the snow, and he used his pants as a ruler. You can see there was at least a foot of snow in this area that accumulated!

My Boston Snow Angel
















This afternoon, Peter and I were on the phone from 3pm to 6pm. We were talking with a researcher in California who is studying the impact of remembrance items on bereaved parents. She is conducting this study for her doctoral dissertation. I am always compelled to help doctoral students because I remember how hard it was to find subjects. I will discuss my feelings about this call tomorrow. But I have to say Peter and I shared a lot of our experiences with her and I feel in the process I gained further insights into what some of Mattie's objects mean to me and how creating remembrance items could help other bereaved parents. 

Friday, January 22, 2016

Friday, January 22, 2016

Tonight's picture was taken in February of 2004. Mattie wasn't even two years old yet. However, he was intrigued by the snow. Back then we would get dustings of snow in DC. Never a blizzard. Not in Mattie's lifetime. He died in 2009, so he never saw snowmaggedon of 2010. I have a feeling if Mattie were alive today he would be outside and playing in our current blizzard. 


Quote of the day: How do you go on knowing that you will never again—not ever, ever—see the person you have loved? How do you survive a single hour, a single minute, a single second of that knowledge? How do you hold yourself together? ~ Howard Jacobson

Given that we will be pretty home bound the next three days, I suggested to Peter that we go out to lunch after he got home from work. Everything in DC was closing at noon or 2pm. When Peter arrived home, we called around to see what restaurants in our area were open. Most were closed. So we headed near our local Whole Foods and found that Circa was open. So we had lunch there! This is what the weather conditions looked like around 3:30pm.

Peter posted several photos on Facebook today, but it was this one... with my red umbrella that caused LOTS of conversation. Mainly because Peter asked how many people walk around in the snow with an umbrella? Apparently I am in the minority but we had camps from both sides weighing in and leaving messages. I had no idea my red umbrella could cause such a stir. I have always used an umbrella in the snow because I don't like getting wet. It is a sensory feeling I truly dislike! On a clear day, you could see the Washington Monument in the background. But with the snow cloud layer today all you can see is white behind me.

This is what Virginia Avenue
looked like this afternoon. The whole city looks like a ghost town!

In my umbrella photo above, I am standing in the middle of Virginia Avenue (which is pictured here). Typically one couldn't do that AT ANY TIME of the day. But with the threat of snow, the streets are barren! 

Thursday, January 21, 2016

Thursday, January 21, 2016

Tonight's picture was taken on January 11, 2009. We were in NYC, in order to take Mattie to Sloan Kettering to start an experimental treatment. I will never forget checking into the Affinia Gardens Hotel. They took one look at what we were balancing and Mattie's situation (dealing with cancer and being wheelchair bound) and decided to give us a suite at no extra charge. This suite was incredible. It had two bedrooms, two bathrooms, a kitchen and balconies over looking the city. As you can see, Mattie was attempting to walk or at least stand. But for the most part, Mattie could no longer take steps and move independently after his limb salvaging surgeries in November of 2008. 


Quote of the day: Death. It’s around more than people realize. Because no one wants to talk about it or hear about it. It’s too sad. Too painful. Too hard. The list of reasons is endless. ~ Jessica Sorensen



I received an email today from a doctoral student who is doing research on legacy planning with bereaved parents. She was writing to see if we would help her find subjects for her study. Having been in her shoes before and knowing it can be hard to find subjects for one's dissertation, I decided to fully read her message and to learn more about her study. By training she is a child life specialist, so she already caught my attention. It is also unusual that a student would want to investigate bereavement and bereavement associated with child loss. Yet I really value research is valuable and I want to support it. 

When I heard the work legacy planning, an alarm went off in my head. Peter and I went to a conference once where a social worker talked about the benefits of legacy planning. That one can do this when your child is still alive so that your child can direct how he/she wants to be remembered. Needless to say, we obviously did not have time to talk about death and dying with Mattie, nor did we do any legacy planning. Therefore the conference session made us truly depressed and also made us feel like we let Mattie down. So naturally when I read her dissertation would be examining legacy planning, my head started to shake back and forth. Until I read her definition of legacy planning and what she meant about it. Legacy planning from a child life perspective means doing something active like creating hand and footprints of the child. Some parents turn to these molds after the child dies and find great comfort in them, where as others do not. 

As I was reading about her study, I immediately remembered the many hand and footprints in clay that were created of Mattie. We did this two different times. One time a friend of ours came into Mattie's PICU room with a clay hand print kit and while Mattie was dying, we made a mold of his hand (photo on the left shows Mattie's hand print). Mattie was alive but not conscious to what was going on. The second time we made molds of Mattie's hands and feet, he had just died. Specifically, we did them about two hours after Mattie died. I have to say I feel very differently about the mold created when Mattie was alive versus the ones created after he died. The molds created after Mattie died are in boxes and we NEVER look at them. I know where they are in our living room, but I refuse to either see them or get rid of them. Whereas the other other mold created when he was alive is on display in our living room. 

I think it does matter the context and the environment in which hand/foot prints are created. Having these reminders is a mixed blessing, when they were created under duress they do not represent the spirit and essence of Mattie. Instead, they only remind me of the cancer. Did I know I felt this way? That I felt differently about these two different sets of molds? Not really, but when asked about them, the emotions and feelings the molds evoke provide immediate responses. What I found intriguing about this is I am not alone and there is a whole research study underway about such legacy planning methods. In any case, not only am I trying to help this student find subjects, but Peter and I agreed to be participants.

Wednesday, January 20, 2016

Wednesday, January 20, 2016

Tonight's picture was taken in January of 2009. One of Mattie's friends brought him this HUGE Scooby Doo balloon. Mattie absolutely LOVED Scooby Doo. In fact, his sixth birthday (pre-cancer), Scooby was the theme of the party! I have to imagine that we watched every single Scooby Doo TV episode and ALL the movies throughout Mattie's cancer battle. Even when Mattie was healthy he was never a couch potato and he wasn't the kind of kid who liked to be connected to technology. Instead Mattie loved exploring his world and was very hands on, and wanted you to be too. This did not change much when he got cancer. Though the medications were toxic and slowed him down, he rarely wanted to just watch TV, and when he did you knew he was sick.


Quote of the day: Unable are the loved to die. For love is immortality. ~ Emily Dickinson

Our Facebook friend Tim Beck sent us this photographic creation today. Mattie is at the 8 o'clock position. When I look at this photo, I imagine it rotating clockwise and constantly moving. The one commonality with these 12 children is they all died from cancer. I think that speaks volumes and what you can't see is the immense loss and toll upon the families. Yet through Tim's creations, he lets us know our children have not been forgotten.  

DC is bracing for a blizzard starting on Friday, with about two feet or more of snow predicted. Given that we could be inside for days, I decided to go to the grocery store today. All I can say is WOW! I know the stores get inundated but today was almost scary. The person who checked me out at Safeway told me it has been like this ALL WEEK, as people prepare for the snow. 

One would think that milk, eggs, bread and so forth would be running low. Or at least these were the items in the past that people ran to the store for! NOT this time, what was practically barren were the meat and poultry display cases. Practically empty! It was hard to imagine.

But the fun was the check out line. I took a photo of it because I have NEVER experienced the one line queuing model. Instead of lining up by each cash register, one long line for check out was formed. A line that went around the periphery of the store. I gather this model was started so that people weren't bunching up and backing up by the cash registers. For the most part people complied with this one line model. Yet a few people were confused and jumped the line and waited by the cash register instead. Needless to say, when that happened, a fellow customer would go up to that person and point out that they cut the line and had to go ALL the way in the back of the line and WAIT their turn! 

While I waited my turn and finally got to the cash register, I noticed a woman pop up behind me and a man behind her. The man quickly told her that she cut the line. Now he could have sent her packing! But instead, he explained to her the process and allowed her to stay behind me and in front of him. While I was being checked out, I started talking to both of them. The fellow was a navy officer who graduated from Annapolis. He told us about the many places he was stationed at but what caught our attention is he liked to cook and had great recipes. I thanked him for his service to the Country and he was very happy to be acknowledged but said "of course." As if he wouldn't have it any other way. I really liked the way he treated the lady behind me, his patience, and trying to spare her from waiting long, since she was older than us. So in the midst of what could be chaos, there was order and compassion around me. Mind you when I left the store, Channel 7 pulled in because I have no doubt they saw a potential story here!

Tuesday, January 19, 2016

Tuesday, January 19, 2016 -- Mattie died 331 weeks ago today.

Tonight's picture was taken on January 17, 2009. Mattie was home after his trip to NYC to start an experimental treatment at Sloan Kettering. While in NY, we went to the top floor of the the Empire State Building with Mattie and this made an impression on him, so much so that he wanted to take home a reminder. Therefore at the gift shop Mattie spied an erector set of the Empire State Building. Peter and Mattie built this structure together. It took HOURS and a lot of labor. After it was built, Mattie put a little green figure on the top of it! This model remains in Mattie's room today.



Quote of the day: Grief is the ultimate unrequited love. However hard and long we love someone who has died, they can never love us back. At least that is how it feels…. ~ Rosamund Lupton

When the Washington Post came to our home to interview us and photograph the Foundation's office, ie Mattie's bedroom, look what was captured! A photo of the same erector set seen above. The only difference is on top of it, I now have a safari hat that Mattie acquired from his fifth birthday party at the National zoo. 




Today, a Tuesday very interestingly (Mattie died on a Tuesday, in the hospital), I went back to Georgetown University Hospital to sit with a friend of mine whose husband was getting surgery. I know that it isn't great to sit alone while waiting for someone you love to have surgery, and distractions and support are needed. If nothing else I am a good distraction and I am sure to bring chocolate. The food of choice when under stress. 

While at the hospital today, I passed the outdoor space where we always would bring Mattie when the weather cooperated. In one particular space, by the medical school library is a rock garden. With ALL sizes of rocks. Mattie loved this space and one of Mattie's signature traits was he liked taking a part of his outdoor experiences home with him. Which is why we had a LARGE stone, branch, acorn, and shell collection in the commons area of our home. One day while at the hospital, Mattie insisted on taking a large stone from the garden. Typically I wouldn't allow this since it was private property. But given the circumstances and the fact that it was a difficult day, I conceded. As you can see this STONE still exists by our front door today! Any case, whenever I pass certain spots in the hospital, I land up reflecting. As if six years haven't passed! Part of the hospital still seem very real to me, and I guess when you live in them intensely for 15 months this can happen. 

My friend's surgical liaison today was Melissa. I know Melissa well, because she was Mattie's surgical liaison on many occasions. She is a wonderful, responsive, and attentive person who goes into the operating rooms, checks on patients, and provides family members with updates. Some of Mattie's surgeries were ten hours long, so having these periodic checks were a God sent. Now many years later she is still bringing comfort to people, and her smile is appreciated. She remembers me and I remember her. Rather interesting no? To me this is what makes aspects of Georgetown special, it is the human connections that can be forged with people, and when your loved one is in crisis, these connections are vital because like we always say...... it's not just about the medicine. 

Monday, January 18, 2016

Monday, January 18, 2016

Tonight's picture was taken in April of 2007. We took Mattie to Calvert Cliffs in Maryland. This wonderful nature preserve was incredibly special and memorable, because after an almost two mile walk along beautiful paths, you come to a beach on the Bay. What this beach is known for is its fossilized sharks teeth. I can't tell you how Mattie and Peter perfected their beach combing skills. Needless to say we never left a visit to Calvert Cliffs without finding a tooth. I still have a collection of these teeth in a Ziploc bag. We have tried visiting Calvert Cliffs after Mattie died, but it was very hard for Peter and rather depressing for us. 


Quote of the day: Death wasn’t a movie where the pretty star faded away with a touch of pale makeup and every hair in place. ~ Soheir Khashoggi


When I saw this quote today, my response to it was..... absolutely! I remember Mattie's sedation nurse angel once said to me.... death happens but it isn't natural. Of course at the time I had no idea what she meant, until I experienced Mattie's six hour death of torture. Movies and TV portray people just dying peacefully, almost like not waking up from sleep. Certainly for many people death is this way. But that isn't the case for everyone and for patients like Mattie who have disease in their lungs, dying almost resembles a slow drowning in one's fluids. Except the drowning isn't quick! 

This evening I received this amazing Mattie composition by our Facebook friend, Tim Beck. Tim always out does himself and when he sends me these masterpieces they are always by surprise! I do not select the photos at all. Tim finds them from Mattie's blog! As I tell Tim all the time.... "I love seeing Mattie through your eyes." Also one of the things I absolutely love, is after receiving Tim's masterpieces, I like to reflect and remember upon the photos he has captured and transformed.

When I received this gift tonight, I have to tell you that at first I couldn't remember where this center photo was taken or the context of the photo. However, as you can see above, the photo was originally taken in April of 2007 at Calvert Cliffs. It is a game I love to play with Tim... Guess what photo this is and then once I guess I do like to share a memory! In this particular case, until I saw this photo tonight, I completely forgot about Mattie's death grips around my neck when he hugged me. The beauty of receiving a gift from Tim, is that I get to see the physical beauty of Mattie and then I have someone who actually listens to my memories that these photographic creations evoke!

Sunday, January 17, 2016

Sunday, January 17, 2016

Tonight's picture was taken on January 13, 2009. Several of Mattie's psychosocial team members at Georgetown Hospital knew we were going to NYC to start experimental treatment at Sloan Kettering. As a treat, they got us six orchestra section tickets in the Minskoff Theatre to see The Lion King. We brought my lifetime friend Karen with us as well as one of Mattie's babysitters, Emily and her fiance who were living in New York. We thoroughly enjoyed the show and after the performance we got to go on stage and meet Nala, the main female lead in the show. It was a night to remember. Of course Peter had to carry Mattie, because he couldn't physically walk anymore.


Quote of the day: Grief can be a burden, but also an anchor. You get used to the weight, how it holds you in place. ~ Sarah Dessen

We had our first snow fall for the winter. Of course it wasn't anything to write home about, since it was too warm outside for it to stick or even create a dusting in DC. Yet Peter and I joked about it because we know in DC panic sets in with even the threat of snow.

In our commons area we have a garden of trees. All the trees in this garden were planted by Peter and Mattie together. Which is why I now refer to this space as our memorial garden. When Peter and Mattie originally planted these trees, they were tiny! Now a few of them are 10-12 feet tall. 

In the garden we set up three bird feeders on garden hooks. I bought these hooks when my 86 year old friend Mary was dying. I wanted her to be able to see birds outside her window while she was confined to her bed. Unfortunately Mary died the same week I bought the hooks, and she only got to see the birds for a few days. Nonetheless, after she died, I brought her garden hooks home and placed them in Mattie's garden. 

Mattie and I started feeding the birds the year he was born. So literally we have been feeding the sparrow population of DC for nearly 14 years. I am quite certain that we have the same flocks come back winter to winter to visit us. We used to feed them on our deck, but after I brought Mary's hooks home, I decided to place them in the garden. At first I was afraid our sparrows wouldn't find the new feeding location, but within a few hours they quickly acclimated to their new space. In fact I think they like it better, since the feeders are near trees and bushes, which enables them to hide when necessary. It is necessary at times because we have hawks and falcons who stop by to pinch sparrows for a meal. This is one of the signs of winter I don't care to see. 

If you look at the photo I took today, you can see hundreds of sparrows surrounding the feeders. They are on the ground, in the bushes, and on the feeders. They have such a significant presence that we can hear them chirping from inside. When the feeders are empty, they let us know that too, since they fly into our deck space and flutter by my window where I work. They get their needs met and to me they are a wonderful distraction that breaks up the long winter months.