Saturday, January 30, 2016

Saturday, January 30, 2016

Tonight's picture was taken on February 4, 2009. Anna, Mattie's physical therapist, came up to the pediatric unit to give him physical therapy. Mattie was truly disgusted with our request for him to do this, so in order to inspire him, Anna and I decided to turn the shoe on the other foot. We said that Mattie could make us exercise, but then we wanted him to join in. He seemed to like that idea a lot. Anna and I got down on the floor and did a physical therapy twister. Mattie was calling the shots and LOVED it! Anna and I practically did just about anything to get Mattie to participate in physical therapy, because at the time we thought after treatment Mattie would have the chance to rehabilitate and regain his strength. 


Quote of the day: The whole world can become the enemy when you lose what you love. ~ Kristina McMorris


Peter and I were invited to an open house today at Sinai Hospital in Baltimore.
Dr. Aziza Shad, who once ran the pediatric HEM/ONC program at Georgetown University Hospital is now the Chief of Pediatrics at Sinai. How do we know Aziza? After all she wasn't Mattie's oncologist. It turns out that Aziza is the doctor who assisted us when Mattie was dying. She was with us on this journey until the end and made the tough but RIGHT call to give Mattie propofol to induce a coma. Basically to assist in his horrific dying process. These are moments and care you never forget. Aziza was also the person who encouraged me to have Mattie die in the hospital rather than at home. Ultimately Mattie is the one who made the decision and HE CHOSE the hospital. But Aziza was 100% correct, we needed a hospital not just for treatment but for end of life care. There is no way any of us or hospice could have handled Mattie at the end of his life. We needed extreme measures and a trained hospital staff on hand. Of course this was not just any staff, these were professional we had come to know, trust, and respect over the course of 14 months. 

Aziza held an open house today for many of her Georgetown supporters at Sinai Hospital. This open house was lovely. It wasn't staged or programmed but truly warm and inviting, which enabled us all to interact with one another and share ideas about what we could bring to Sinai. Mind you, Peter and I knew most of the parents sitting around the table today, so it was like a mini reunion. 

One of the issues we surfaced at the gathering was the Psychosocial Standards of Care and how we can bring these standards to Sinai. What impressed us was the doctors and administrators were interested in our work and truly understood the importance of family center care, which includes psychosocial care for the patient and the family. I wasn't necessarily going to bring this up at the meeting, but literally Aziza asked me in a room full of people... "Vicki what are your thoughts?" Meaning did I have something to say. She did not do this with anyone else, so I greatly appreciated her vote of confidence and belief in what amazing work we just accomplished with getting the standards published in a top tier medical journal. 

We had the opportunity to have a tour of the outpatient clinic and inpatient pediatric unit at Sinai. This is a typical patient room. It was designed with the family in mind and the spaciousness, cleanliness, and brightness caught my attention immediately!

This was one of their family lounges on the pediatric inpatient unit. 

What I fell in love with was this space..... The child life playroom! It was so inviting, bright, and engaging. 

The hospital has 26 patient rooms and has 3 child life specialists, which is EXCELLENT!

After our tour, we got together with Aziza Shad (in the center in red) for a photo with all our Georgetown friends (families with children treated at Georgetown). 

You may look at my arms and think they look funny. But what you can't see is that my left hand is wrapped around my body holding Marilyn's hand (who was standing behind me). I met Marilyn very early on in Mattie's treatment process. She is a nurse by training, and her daughter is a cancer survivor. She came by one day on the pediatric floor to talk with me. She had tried other times, but I wouldn't engage in conversation. That one day, she got a hold of me, and I appreciated being connected with her. We have remained friends ever since. In fact, in 2011 her daughter (a cancer survivor and now an art therapist at a children's hospital in Chicago) and her were our guest speakers at our annual Walk. 

Friday, January 29, 2016

Friday, January 29, 2016

Tonight's picture was taken on February 2, 2009. Mattie was in the clinic at Georgetown University Hospital and on that day his art therapists were telling us that they were creating a welcome plaque for the inpatient pediatric units at the hospital. They thought it would be great to get actual hand prints from the children on this plaque. So they asked Mattie if he would provide his hand print. Mattie was LESS than interested. However, when I suggested he provide his foot print, he was ALL FOR IT! I snapped a photo of Jenny and Jessie painting his foot and the actual result is down below. This plaque remains on display at the hospital and every time I visit the inpatient units, I get to see Mattie's footprint! Since the inpatient unit was so special to Mattie, and was like our second home to us, I appreciate seeing a part of Mattie remaining at the hospital (even though most people do not know that this footprint belonged to Mattie).


Quote of the day: It is the capacity to feel consuming grief and pain and despair that also allows me to embrace love and joy and beauty with my whole heart. I must let it all in. ~ Anna White


Recently Peter and I were contacted by a doctoral student in California who is working on a degree in psychology. She is also a certified child life specialist with over 11 years in that field. We get many requests from students, asking for help finding subjects for their studies. I ALWAYS help them, because I remember those days when I too was struggling to find subjects for my dissertation. 

However, while reading this woman's study description, and learning that her focus was on remembrance items used by bereaved parents, I took personal notice. I felt her research questions APPLIED to us directly and that Peter and I would have a lot to say on the matter. So I wrote back to her and told her that I would publicize her study but that I also wanted to participate.

Last weekend, during the blizzard, Peter and I spoke to the researcher on the phone. She interviewed me for 90 minutes and then Peter for another 60 minutes. She wanted to know about Mattie before cancer, Mattie throughout his cancer battle, and then we discussed legacy items and what they meant to us.

Both Peter and I have real issues with the phrase LEGACY items. Why? Soon after Mattie died, we went to a conference in Baltimore. One of the sessions was conducted by social workers and they discussed the importance of legacy work with their child patients and families. In many cases, these social workers had an opportunity to talk with the child about his/her pending death and together created items to be remembered. These items could be the children's wishes, what they wanted their parents to do after they were gone, how they wanted to be remembered, etc. Needless to say with Mattie we hadn't stopped treatment long before we determined he was dying. There was NO TIME to discuss his death, much less process this news. Frankly though creating legacy items may work for some children and families, I do not think it does for everyone. After hearing this conference presentation, we both left feeling very GUILTY. That we hadn't given Mattie a voice and that we did not work harder to secure his wishes. It was truly a conference session that put us in a funk and even to this day the notion of legacy items still makes us uneasy. It evokes that conference, the feeling we left with, and of course the reminder of what we did not do.  

This researcher understood our feelings, but what intrigued me was her study focused on legacy items we had..... hand and foot prints. She was particularly interested in hand/foot prints created as Mattie was dying. Yet as we talked for 90 minutes, a lot was revealed. Things I may have understood on a subconscious level, but had never had the opportunity to express to someone. 

When she asked about hand/foot prints created while Mattie was dying, I immediately thought of the RED BOXES underneath our dining room breakfront. What is in these boxes? The hand and foot prints created two hours after Mattie died, in his PICU room. I remember Mattie's child life specialist and art therapist placing Mattie's hands and feet in these clay blocks, but honestly I do not remember how they introduced this notion to me. The researcher wanted to know if they had a talk with us about legacy items and whether we desired to create these prints. I truthfully do not remember having such a conversation. Just that the prints happened. I believe this was probably the case because I had expressed to these women in passing that I was saddened that I never created a hand/foot print with Mattie when he was alive. So I really believe this was their reaction to my sentiments expressed on a different occasion. 

But the question maybe..... why are the prints in boxes and NOT displayed? My answer to such a question is that seeing these prints would not bring me joy or comfortable but instead great sadness. They were taken after watching Mattie go through five hours of torture before dying. There was not enough pain medication in the world to relieve Mattie's pain and he was basically drowning in his own fluids. Which was frightening to watch and hear! Mattie had trouble dying and the only way he finally did die was he was put into a coma with propofol and we sat with him while he flat lined. It was awful and therefore these prints remind me of that night/morning. Yet I can't throw the prints away. It gives me some sort of peace knowing they are there and we did them, but I don't want to see them. 

Then we have this hand print which is on display in our living room. This print was taken by a friend of mine the night before Mattie died. Mattie was not cognitively aware of the fact that this print was being taken of him. My friend did the print and Peter and I watched. The researcher asked me how I felt about this print and my reaction, which surprised me was.... NOT good. I do have it on display because my friend and Mattie's art teacher worked hard (to clean it up and paint it) on it. But honestly it too reminds me of a painful scene and it isn't a meaningful  representation of Mattie because he wasn't actively engaged in its production. Part of the joy I had while Mattie was at the hospital was that I could SEE him create things. I could hear his discussion about his projects and observed how he played with them. This wasn't the case with this hand print, and in a way the true spirit of Mattie is not reflected in this piece. 

So I tried to encourage the researcher to understand that legacy pieces really need to be made when the child is battling cancer and BEFORE one learns of the terminal status. Pieces that Mattie made during his cancer battle, I happen to LOVE! They remind me of him and they are items I do reflect on. ALL HIS ART PIECES are Mattie's true legacy. 

This hand and foot print, I absolutely forgot about, until Peter mentioned them to me. Naturally I see them everyday, since they sit on an Italian music box that houses Mattie's ashes. Yet when the researcher asked me about his hand and foot prints, these models did not come to mind. Even worse I can't remember when or how we created these items together! 

Lastly we have this footprint. I described this plaque in the beginning of tonight's blog. Seeing this footprint does make me smile, and I believe it does because of how it was created. I can picture that moment in the clinic and the fun Mattie was having as his foot was being painted. That fun, laughter, and spirit was Mattie. 

I realize we were helping this researcher obtain data for her study, but I found it helpful too. Mainly because it is rare to have someone just talk about Mattie, our feelings around his death and the objects that surround us. It wasn't like I did not know how I felt, but it was good to verbalize them and to be able to use our insights to help future families. The one thing Peter and I both mentioned in our conversations (and mind you we did not chat with each other about our thoughts prior to the call) is that psychosocial professionals need to alert parents who just lost a child that how they feel at that exact moment may not be how they feel months or years from now with regard to creating a hand/foot print. I don't particularly find the hand/foot print helpful, yet I am glad I have it because I can't say it wasn't done. I may not have been able to say that years ago, but I can say that now. So talking about time and legacy items with family members is crucial and our second point was it matters WHO has this legacy item conversation with family members. It can't be someone on the periphery of care, but instead a professional who was very involved with the child and family, and who is trusted. 

Thursday, January 28, 2016

Thursday, January 28, 2016

Tonight's picture was taken in February of 2004. Mattie was almost two years old and out for a weekend adventure with us. Mattie preferred being outdoors, and it did not matter the temperature or time of year. He never articulated with me while he liked being with nature, but he seemed happier and more at peace there. Early on in Mattie's life he contended with sensory issues, specifically focused on sound, smells, textures, and most definitely people coming into his personal space. Being outside, many of these sensory issues weren't an issue. So despite the fact that I am always cold, I learned to adapt in order to give Mattie the things he needed to develop. 



Quote of the day: Here is one of the worst things about having someone you love die: It happens again every single morning. ~ Anna Quindlen

Yesterday my friend Christine sent me several photos by email. She has been organizing her photos and placing them into albums and she wanted me to know that Mattie was remembered in these albums. 

Mattie and Christine's son, Campbell, were the closest of friends in kindergarten. The wonderful part about all of this is Christine and I also liked each other and became friends. So it was wonderful that the boys just gravitated to one another. 

I thought I saw every possible photo of Mattie, but I have NEVER seen these two. They are total surprises to me and I can't even figure out where Mattie was and what he was doing. I know he was on a playdate with Campbell and I assume it was at Campbell's home. But I love the karate like chop that Christine caught on camera!

It is a wonderful gift when someone out of the blue shares memories like this me. It helps me see that perhaps Mattie has touched more people than just Peter and I, and someone else is helping me actively keep his memory alive. 

This photo was taken at the Accotink Cardboard Boat Regatta in Springfield, VA. This event happens every June. Mattie went with us, and his friend Campbell and his sister. We all had a great time and our thinking was one day Mattie and Peter would build a cardboard boat together. 

This photo was taken in the child life playroom at the hospital. We were celebrating Mattie's 7th birthday. His last birthday with us. He was surrounded by his closest friends: Campbell, Livi (Campbell's sister), Charlotte (who Mattie called his girlfriend), Brandon (Mattie's best buddy at Georgetown, as they battled cancer together), Zachary and Abbie (both of whom Mattie met in preschool).

A close up of Mattie and Campbell. Campbell is the fellow with his head down, covered in silly string.

This photo was taken at Campbell's sixth birthday party! Mattie was having a great time that day with sprinklers, a moon bounce, and time with his friends.

Wednesday, January 27, 2016

Wednesday, January 27, 2016

Tonight's picture was taken in August 2008. Mattie was in his first few weeks of treatment. We did not know if we were coming or going back then. We were truly shocked over a cancer diagnosis. Mattie hadn't lost his hair yet, as he only started chemo. Mattie's art therapists learned early on that Mattie loved art and creating. Not to mention Scooby Doo. So they sketched out the Scooby Doo gang on a ceiling tile and invited us to paint it as a family. This tile meant a lot to us, and for many years it hung on the ceiling of the clinic at Georgetown. This was the first of five ceiling tiles that Mattie created. But that tile is meaningful to me, because as a family we were lost and traumatized and painting together gave us time away from the reality of cancer. 


Quote of the day: Life is not profound without its own tragedy. It humbles us. Sets the bar for our introspection. Keeps us from believing we are gods. Puts our egos in check. ~ Crystal Evans


I received an evite out of the blue today from Georgetown University Hospital. Typically when one receives an evite (an electronic invitation) it is to a party or celebration. Well in this case it was neither! Instead, through this group wide invitation, I learned that the children's ceiling tiles that were painted in the clinic were coming down and we could pick them up at certain dates and times, or they were going to get thrown out. The reason the tiles are coming down is because the clinic is getting renovated.

Perhaps when you read the paragraph above you already see two problems with what I am saying, or maybe you don't. As you know, I am going to tell you my thoughts anyway!!! Just when I think I have experienced about everything possible as it relates to Mattie's loss, I find that I can hit a whole NEW low. 

I do not think information about our children's tiles coming down should be conveyed in an electronic invitation. There is nothing happy about the tiles coming down in my mind, especially if you are a parent of a child who died. So my first issue was with how this information was conveyed. My second issue, which is probably the most upsetting is the significance of the tiles coming down. Sure I could take the tiles home and preserve them, but in reality these tiles have been up and on DISPLAY for seven years now. It made me feel that Mattie's spirit was still alive and his life was being celebrated in a symbolic way, because his art was providing colorful hope to all the children beneath the tiles who were seeking treatment. With the removal of the tiles, this signifies YET another loss in our lives and ONE MORE place that won't be remembering Mattie. Tangible items mean a lot to bereaved parents and it would have been my hope that even if the tiles can't be salvaged and used in the new clinic that a creative alternative could be presented to parents. Whether that is a photo of the tiles that could get incorporated in the new clinic, or something! 

Needless to say, I can't tell you how upsetting this was to me today, and how even more upsetting it was that I had to try to explain my position to the hospital. I am frustrated, angry, and sad all at the same time. Naturally I have photo documentation of EACH tile Mattie created and I am sharing it with you tonight. 

Several years ago, the Foundation had a chocolate therapy party in the clinic. The reason I am showing you this photo is because you can see all the children's ceiling tiles in the clinic. It made the space very colorful and child friendly. 

As some of my favorite readers know, Mattie loved roaches! Well at least plastic ones, I am not sure he ever saw a live one. Which is just fine with me, since I am NOT a bug person. Mattie knew bugs freaked me out, which inspired him to like bugs even more. So just to prove his point, he created a large giant size roach for the clinic. Notice the woman in the upper right hand corner screaming "help." That is supposed to be me!!! Also on the lower right hand corner is a model magic roach that Mattie created with his art therapists. We still have that roach in our home today! However, this ceiling tile was taken down from the clinic years ago and no one knows where it is. Thankfully I have a photo of Mattie's zaniness. 

This is the Scooby Doo tile which I spoke about above. This is the finished product that hung in one of the patient rooms in the clinic. 

Mattie loved trains. His friend Zachary went to London, and when he came back he brought Mattie a toy metal London train. This is a painting of that train. We still have this train on a shelf in Mattie's bedroom, because he really loved that Zachary thought about him and of course the many hours these two boys played with trains together. Also notice the SUN in this painting. A tell tale item incorporated into most of Mattie's works. 

This is Maya. Maya was a patient in the clinic, and the only same aged child in the hospital who Mattie related to! Mattie and Maya joined forces one day to paint a rainbow tile. 

Mattie's art therapists sketched a haunted house on a tile and Mattie painted it. This of course   commemorated Halloween of 2008, Mattie's last Halloween with us. 

Tuesday, January 26, 2016

Tuesday, January 26, 2016 -- Mattie died 332 weeks ago today.

Tonight's picture was taken in February of 2004. Mattie was almost two years old in this photo. This was one of the first times Mattie saw snow and was able to understand what was going on. Literally we opened our front door and you can see Mattie's expression as he saw the snow. He was fascinated, intrigued, and puzzled all at the same time. However, once Mattie got introduced to snow, he loved it. He especially loved sledding which he did at his preschool and once when visiting Boston. 





Quote of the day: The whole world can become the enemy when you lose what you love. ~ Kristina McMorris



Since Friday when the blizzard began, Peter and I were transformed into two zany characters on Facebook. I named Peter the "Weather Geek," because of his fascination with the weather. He watches trends, understands how to read computer modeling, and literally becomes jazzy over significant weather events. While I on the other hand was named "Crazy Chick," because some people think it is "crazy" to use an umbrella in a blizzard. I of course think an umbrella works just fine! Several people wrote to me to thank me for creating these characters and posting updates on Facebook about our weather escapades. I am happy we were entertaining and it certainly got us out of our home and investigating the state of affairs around us. Peter went back to work today, so it was Crazy Chick going solo and it wasn't as much fun. 



During the blizzard I cooked a roasting chicken and saved the wishbone. I propped the wishbone up in the snow today next to my pansies. I thought it made a cute photo...... since my wish is for the snow to melt and for spring to come early. 

I took a walk today, which was easier said than done. I think walking was more treacherous than driving in DC. The sidewalks were either icy, slushy, or a combination. This is a view of the Potomac River covered in snow. In the background is Georgetown University. A sight we are very familiar with since Mattie was treated on that campus for 14 months. 

Now I think this photo speaks volumes. This man was jogging on Rock Creek
Parkway. I have no doubt he decided to do this since the roads are in better shape than the side walks! However, it is HIGHLY unusual to see Rock Creek without a car on it. 

This is a photo of our bird feeders, which sit in Mattie's remembrance garden. Since Mattie was a baby, we have fed the sparrow population in DC. I am quite certain some of these birds come back to visit us each year. They seem to know our patterns, where we store the food, and where the feeders will be hung. Over the course of the storm, these bird consumed close to 80 pounds of bird seed! We can't keep the three feeders full! They get demolished each day. 

I took this photo of an airplane on final approach to Reagan National Airport. Given that airports have been closed for days, this was a sign to me that things are slowly returning to normal. 

Monday, January 25, 2016

Monday, January 25, 2016

Tonight's picture was taken in March of 2007. That year we got snow in the spring. As you can see Mattie was out there playing and also trying to taste the snow. I ironically do not have many photos of Mattie in the snow. Mainly because it rarely snowed here in the years Mattie was alive. I have no doubt that if he were with us today, Peter and I would have no choice but play in the snow. Maybe if he did not lose Mattie to cancer, this would seem challenging or a chore. But of course now with a different perspective, he realize sometimes parents do not know how lucky they are. Either case, despite my distaste for the cold, if Mattie wanted to play outside, I went out!


Quote of the day: I was standing in our dining-room thinking of nothing in particular, when a cablegram was put into my hand. It said, ‘Susy was peacefully released today.’ It is one of the mysteries of our nature that a man, all unprepared, can receive a thunder-stroke like that and live. ~ Mark Twain

Though today is January 25, I realize I did not post anything about my Grandma on January 20th, which was the anniversary of her death. It is hard to believe my grandmother died 21 years ago. In all reality it seems like yesterday. 

This photo was taken in the 1980s. This was BEFORE digital technology, so I do not have an exact date. Though we had moved to Los Angeles, we came back to visit New York often. My Grandma was the lady in blue all the way on the right. My mom, myself, Grandma and my Cousin Clara went to Rockefeller Center. The space we were sitting in is where the big ice skating rink is during the winter months. But in the summer, it becomes this lovely outdoor cafe. I did a lovely posting about my Grandma last year that can be found at:

http://mattiebear.blogspot.com/2015/01/tuesday-january-20-2015.html

We are on DAY 4 of being home bound! We went for a walk today and we saw some interesting sights. The first one was this big truck stuck in the snow on one of our side streets. The side streets are a total mess. 

We continued our walk to Whole Foods, which is about four blocks from us. This is the produce section at the store. Typically Whole Foods is brimming with fruits and vegetables. NOT NOW! The food trucks can't get through the snow. 

Outside of Whole Foods was this sight..... I entitled it "Survival of the Fittest and Never fear pigeons are near!"

Right outside Whole Foods was yet another car STUCK!

This is what Peter and I were walking on..... the sidewalks are basically sheets of ice!

Sunday, January 24, 2016

Sunday, January 24, 2016

Tonight's picture was taken in May of 2004. We took Mattie down to the National Mall to walk around and to see the ducks in the reflecting pool. We went to this very spot many times. Both when Mattie was well and when he was battling cancer. Today, though there was 17 inches of snow on the ground we ventured further than our home to take a walk. What you may notice in this photo was that I was holding Mattie's hand and also holding his clothes from the back end. I was always very cautious around water and I did not want Mattie to fall into the pool. I always look at this photo now and find it ironic because I would never have guessed that four years later Mattie would get diagnosed with cancer, and there wouldn't be anything I could do to prevent it. 


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

Last night after dinner, Peter and I went for a walk around our complex. This is Peter in the middle of our commons area, which is right outside our deck door. I entitle this photo..... Where is Peter?

This is Peter in front of our parking garage. The snow blowers had to put the snow somewhere!

In front of our complex door!

This morning we took a walk to the Lincoln Memorial. There were a lot of other stir crazy people around us! Everyone who was around us got there by FOOT! 

We brought items of Mattie's with us, because I wanted them in the photo. Mattie loved toy roaches and you may see the big one in this photo. Mattie got a kick out of scaring his nurses with all sorts of bugs. Once they had his number they played along with his antics! In addition, when Mattie was battling cancer, Peter's colleagues from Canada sent Mattie this hat and mittens. They are truly incredible items which kept me warm and toasty!

We were thinking of Mattie at the reflection pool today. Which is behind the gates, you just can't see it because of all the snow. 

Peter with Albert Einstein! 

Peter on Constitution Avenue. This is a MAJOR thorough fare in DC, and yet there wasn't a car on it today. For good reason. The roads are a disaster and walking is also hard. At times we were walking in over a foot of snow. It makes for good exercising!

The Lincoln Memorial in the Snow. 

I never knew this actually happened, but people were sledding on the steps of the Lincoln Memorial. When Mattie was alive we never had a big enough snow, but I know if he was with us today, he would have been on the steps!!!

The snowed in entrance to the Vietnam War Memorial. 

This afternoon, I baked several dozen chocolate chip cookies for our snow miracle workers in our complex. I wanted to thank them for their extraordinary work since Friday. They have been working NON-STOP around the clock to keep us dug out and pathways clear.