Saturday, April 12, 2014

Saturday, April 12, 2014

Tonight's picture was taken in August of 2009. This photo was a follow up to the one posted last night, of the boat races that took place in the oncology clinic. Mattie and Jocelyn teamed up, created a very unique boat made out of cups, tin foil, and paper sails. They raced against Brandon and Jocelyn's sister, and take a wild guess who WON?! It is hard to believe that just a month later Mattie died and now five years later, Jocelyn died as well. 

Quote of the day: No one can tell what goes on in between the person you were and the person you become. No one can chart that blue and lonely section of hell. There are no maps of the change. You just come out the other side. Or you don't. ~ Stephen King


Peter and I began our day at the crack of dawn! In addition to headaches, I also am unable to sleep. This issue has been going on for weeks, which is a royal problem and greatly impacts my headaches and everything else about the way I function. Peter took our neighbor, who is an older adult, to the emergency room at 7am. She fell and really needed to be examined and scanned. While Peter went to the hospital, I began Foundation work. There are certainly seasons in which I am literally working around the clock. Probably not unlike any small business owner. Just constantly working! If I don't work, nothing gets done. That produces a great deal of angst and pressure, which I know correlates to physical symptoms. Throw in grief and trauma, and we could have a party.

The highlight of our day today was meeting up with our friends Heidi and Phil. They asked us to go out to dinner. Typically when working on Walk website design, we wouldn't have wanted to leave our home. But we decided that we did need to take a break. I of course jump at the chance to socialize, since I spend a great deal of time by myself typically. We had a lovely dinner outside in DC, on a rooftop deck. It truly was spring in DC and after dinner we walked several miles home to where we live. On our journey home, we passed Mattie moon! I naturally couldn't help but capture a photo!

While crossing through Dupont Circle, we saw an unusual site.... a Mallard Duck! Mattie would have gone bonkers over this! Check out this "Dupont Duck" just lounging in the greenery! Honestly the East Coast has been so isolated inside all winter long, people are just craving outdoor time! People are literally like ants coming out of the woodwork! They are EVERYWHERE!

Later this evening Michelle, the undergraduate student from Georgetown who I had the pleasure of meeting a few weeks ago, sent me a few more photos from the Relay for Life that took place on the campus this weekend. She created a "In Memory of Mattie Brown" luminary. I was very touched to see this photo of Facebook tonight!

In addition to the luminary, Michelle also created this beautiful tribute of Mattie to post at the Relay. Very lovely and as I told her, it means a lot to me that my presentation captured her attention enough for her to want to spread Mattie's story around to others. It not only makes me feel effective as a Foundation leader, but it makes me feel proud as Mattie's mom. Through my words I was able to convey just how special a boy he was!

Friday, April 11, 2014

Friday, April 11, 2014

Tonight's picture was taken in August of 2009. Things may have looked happy here, but they were not really happy. Mattie's situation was terminal. As we know now.... so was Jocelyn's (since Jocelyn lost her battle on April 2, 2014). Jocelyn was the buddy kneeling down next to Mattie. That day in clinic, Mattie, Jocelyn, Brandon (Mattie's big buddy), and Jocelyn's sister (Hannah) decided to have boat races. Not big boats, but boats they built out of cups and other materials which they could race in the sink. If you look closely you can see that Mattie and Jocelyn teamed up together and named their boat, "Team Mattie and Jocelyn." Brandon and Hannah clearly comprised the other Team. Most likely the outcome of these teams was rigged, but it was all in good fun. Mattie let FEW people in while battling cancer, and truly only became friends with Brandon and Jocelyn, both cancer patients much older than him. Yet I have to imagine each of these individuals got something from this bond, which is what kept them together. Two cute faces, who fought the same horrible disease. 

Quote of the day: The connections between and among women are the most feared, the most problematic, and the most potentially transforming force on the planet. ~ Adrienne Rich

I received this photo today from an undergraduate student at the Georgetown University. She is participating in the American Cancer Society's Relay for Life. I had the pleasure of meeting this student a few weeks ago when I participated in the "Cookie Friday" ethics presentation. If you look closely at the sign, notice that Michelle placed Mattie's name on it. Mattie is right next to the 'E' in WE! It was lovely to see Mattie remembered. In fact, while I was presenting a few weeks ago, it was very apparent to me that Michelle understood childhood cancer personally. I am good at reading non-verbals while I am talking. After class, Michelle was kind enough to come up to chat with me and to tell me about the loss of her close friend, who would have been graduating with her this year, if he hadn't died from cancer. So unfortunately she understands the horrors of cancer at such a young and tender age. What I have found is cancer has a way of unifying people, regardless of one's background and other demographic differences.

Today at lunch time, I had the opportunity to take another break and meet up with my friend Annie. Annie and I met several years ago. I want to say it was in 2010. But years for me are a lot more gray after Mattie died. Given that Annie lost her daughter in May of 2010, I have to imagine it had to be right after Eloise died. But don't hold me to it, it could have been in 2011. In any case, Annie and I met on Capitol Hill. We both went to a CureSearch advocacy training and then went to lobby on the Hill. Because I live in the District of Columbia and therefore really have no representation on the Hill, I was paired up with Annie who lives in the State of Virginia. One thing led to another, and we clicked. We have been buddies ever since. Annie doesn't live nearby, after all Virginia is a large State, but when she comes into town, we always meet up. She let me know she was coming into town this week, and naturally we always find a way to connect. We connect for many reasons, but we also connect because it is safe to air our feelings. We get each other. We get it when we say..... we are losing friends, people don't understand us, we are feeling blah, how are we going to make it through another birthday, anniversary, holiday, and so forth?! This isn't HAPPY conversation, but this is our reality. A reality that most don't want to hear, a reality that others want to close their eyes and ears to, and a reality that would be safer to say..... this is a Vicki and Annie problem, rather than this is a problem that these women are left to deal with for a lifetime, how can we help?!

At the end of lunch, Annie presented me with packets of seeds. Annie has an amazing garden and can arrange flowers in an incredible artistic fashion. Something I admire. I will do my best with these seeds. She shared with me sunflower seeds! Something I ABSOLUTELY love. I love sunflowers, they have to be one of my favorite flowers! I love their faces as they turn their faces up looking for the sun and then she also shared with me Eloise's favorite flower, the Zinnia. I too happen to love Zinnias, and they are red zinnias, which Mattie would have greatly approved of! So let's see what we can cultivate in our city garden this summer.... in Mattie's and Eloise's memories!

Thursday, April 10, 2014

Thursday, April 10, 2014

Tonight's picture was taken in April of 2009. It is hard to believe that five month later, Mattie died. That day, we walked Mattie down to the Washington Mall, and in his wheelchair, we toured him around. He got to see and feed the ducks and just enjoy the sights and sounds of spring. This was a happy moment caught on camera. But as you saw a few nights ago, not all moments were happy. I did not post those moments on the blog for the most part. I am not sure who I was trying to protect back then? My readers? Maybe, or perhaps I wanted to give Mattie his space and dignity. But I would say Mattie's battle was heroic and hard, and the battle Peter and I endured while helping Mattie day to day was excruciatingly painful. We did not get to turn away, we had to see the tough, depressing, and the unbearable. 


Quote of the day: Enjoy the little things, for one day you may look back and realize they were the big things. ~ Robert Brault


I had the wonderful opportunity to stop working today for a little bit and visit with my friend Mary Ann. Mary Ann and I became friends in graduate school and have known each other quite a while. Today was her birthday and given that we have known each other a long time, we have therefore shared many of life's ups and downs. Yet what I always marvel at with Mary Ann is despite whatever set backs she has received, she remains positive and finds some sort of ray of hope in the whole situation. Even when the sky seems to be filled with clouds. I think that is a real gift.

It was a glorious spring day in Washington, DC and Mary Ann and I actually had lunch outside. It almost seems hard to believe given the winter we had. We chatted about so many things. Talking is how our friendship emerged. We had classes together and in our classes we were required to dialogue, we were required to process things, and in one class in particular, we were required to discuss ethically sensitive material and debate it. Mary Ann and I in many ways took the lead on this in class, and through this became friends. We have been friends ever since. 

Brault's quote means something to me. Because we live in such a BUSY world. In fact, when people tell me they are busy, I can feel my head spinning and stomach turning. We are all SO busy as a society that somehow we are too busy for the people in our lives, and yet if we don't enjoy the little things like connecting with friends then one day I have no doubt we will look back and see we missed the BIG things. Friendships and connections with people need to be cultivated. They just do not happen and remain forever. Taking them for granted is a mistake, because what you put into your relationships is what you typically will get out of them. 

Though I am not a phone person, my phone rang tonight and it was my lifetime friend Karen from New York. She hasn't been feeling well either. Last night she had me worried, so tonight she called me to update me on her status. It is funny, I don't like her pains and condition and she doesn't like mine. So we commiserated, but the one thing I never have to explain to Karen is why I am feeling the way that I do. She just gets it, or accepts it. I find it beyond frustrating to have to explain why I might be sad, mad, angry, or insert the feeling over something as it relates to Mattie's death. I don't expect others to be mind readers for sure, but I think with some level of sensitivity it would seem rather obvious that at certain times of the year and under certain stressors, some things are bound to set me off. 

Wednesday, April 9, 2014

Wednesday, April 9, 2014

Tonight's picture was taken on April 4, 2009, Mattie's 7th and last birthday. Mattie celebrated his birthday in the hospital that year. Posing next to Mattie is Sarah Marshall. Sarah Marshall was one of Mattie's outstanding HEM/ONC nurses. We met Sarah Marshall early on in Mattie's treatment process and learned she is a childhood cancer survivor who was treated at St. Judes Research Hospital. The fact that Sarah Marshall is a survivor gave me hope, in addition to that she is an incredibly competent nurse, she is also compassionate, witty, humorous, and sharp. She could keep up with Mattie and also understood his struggles. Sarah Marshall is her official name, but on September 9th of 2009, she became our "Angel of Mercy." Sarah Marshall was with us during the grueling night that Mattie died. In many ways, I could try to describe Mattie's death until I am blue in the face, but suffice it to say, you truly needed to be there to understand the level of trauma we experienced. Sarah Marshall couldn't have pumped enough narcotics into Mattie. Mattie was on pain pumps, getting IV boluses of pain meds, was on inhalers to help him breathe, and the list went on. It was tragic, the sounds were ghastly, and throughout the night Mattie's bed was filled with syringes. It looked like a war zone. There was just not enough medicine available to keep him comfortable which is why Mattie needed to be induced into a coma to die. Sarah Marshall went through these agonizing hours with us. I think you should also note that Sarah Marshall is NO LONGER a HEM/ONC nurse at Georgetown. After Mattie's death, she became a PICU nurse. I do not know for sure, but I suspect there was a direct correlation between Mattie's traumatic death and her migrating over to working in the intensive care unit. As I look at this photo tonight, I remember April 4th and September 9th very vividly!


Quote of the day: To see an angel, you must see another's soul. To feel an angel, you must touch another's heart. To hear an angel you must listen to both. ~ Author Unknown 


I had the pleasure of interacting with 17 kindergarten students today at Mattie's school. It was my first art session in my series of three. I have done this series for the past four years and it is always my honor to be invited back by Donna, one of the outstanding kindergarten teachers that I have had the pleasure of getting to know. Donna and I share a lot in common. We both love to learn, the art of conversation, learning about people and places, pursuing and discussing feelings, and of course art. 

This week, my goal was to introduce the students to Picasso. I first wanted to ask them some basic questions such as: 1) Are you an artist? 2) Is there a right or wrong way to do art? 3) When you look at art, does it make you feel a certain way? Ultimately I wanted the children to understand that color evokes certain feelings for them, and yet not every color evokes the same feelings for every person. I love red and it makes me happy, and yet for others red makes them feel edgy or angry. To illustrate my point, I taped a piece of paper with the color red on Donna's back. Donna couldn't see the color. I told the students not to shout out the color either. The point of the exercise was they had to describe how the color made them feel, from that description, Donna then had to guess what color I taped to her back. After that exercise, I then read to the class the wonderful Dr. Seuss book, My Many Colored Days. A wonderful book, about how we all have our up and down days within us, and each of those moods and feelings Dr. Seuss attaches to a color. A clever book, told in Seuss fashion. 

After this color introduction, I then moved onto my power point presentation. Literally the children sat still for 30 minutes as I introduced them to content. They saw slides of Picasso. What he looked like as a child, an adult, what some of his art work looked like in his blue period and rose period. I wanted the children to understand that Picasso painted how he felt! If he was sad, his paintings were sad (BLUE), if he was happy, his paintings were also happy (ROSE). The final concept I explained to them was cubism (people and objects are painted using geometric shapes, such as cubes, circles, and triangles. In addition, people or objects in the painting are shown from many different points of view at the same time). This style fascinated them and literally they came up to the screen to stare at the objects and to try to determine what on earth Picasso had painted and created. It was darling to see and hear their banter. 

After the learning portion, I had the children move to a hands on activity. Today's activity was to work in groups and to design their own Picasso. The goal was for them to experiment with cubism. To see geometric shapes in what they paint! On each of the four group tables, was a white poster board. On the white poster board I traced a framework in black marker of "Woman with a Hat." Each group then had to work together to color in the framework and form a painting. You can see the group finished products below. You should note that the kids did not see "Woman in a Hat" before they began painting. So they had NO idea what Picasso's painting actually looked like. As you can see, each of the paintings varied and they also varied from Picasso's actual painting. In fact, you may even think the children's art work is more colorful, lively, and creative. I leave that up to you!

Group 1's creation

Group 2's creation 

Group 3' s creation 

Group 4's creation 





















Many of the children were priceless today! However, at the end of the session, one little girl came up to me to let me know how much she appreciated my visit, all my efforts, and thanked me for coming. It was such a mature and lovely thank you. I have to admit I was caught off guard, but of course thanked her very much and told her she made my day. 

The third part of my classroom experience was the snack. Because Picasso was born in Spain, I made the children, apple empanadas. I baked them yesterday and this year I even coated them with sugar and cinnamon while they were baking. They seemed to go over well at the end of our time together. 

Later on today, I went to my friend Heidi's house to pick up items for our April toiletry drive in Mattie's honor. While there, I got to see Isabel, Heidi's daughter. Isabel is a special 16 year old. She is an only child and we relate to each other on multiple levels. Before leaving, literally Isabel picked a hyacinth (which you can see in my vase) for me from her garden. She then emailed me later in the day and said, "when I saw the flower it reminded me of you. So beautiful, yet tilted over, like you, beautiful yet sad. But, the flower with the help of some sunlight, water, and sticks to hold it up, can grow straight again." As I said to Isabel, if I could only find some sticks to prop me up, like this flower. Nonetheless, I told her I liked her analogy and sentiments very much, and of course appreciated the hyacinth and beautiful gesture. A gesture of thinking beyond one's self and one's needs. One of the many things I so admire about Isabel. 

Tuesday, April 8, 2014

Tuesday, April 8, 2014 -- Mattie died 239 weeks ago today. 

Tonight's picture was taken in April of 2009. Believe it or not, this photo was taken inside of Mattie's hospital room. What you may not be able to tell is this room is about the size of a walk in closet. For a closet it is huge, for a room to hold multiple people and equipment, it is small! Yet Mattie had a way of packing in the people and things. Mattie had the attention of the child life staff! Not an unusual occurrence for Mattie. From left to right were Robbie (child life volunteer), Linda (Mattie's child life specialist), and Meg (child life intern). It is funny, when people think of cancer, the immediate thing to focus upon is the medicine. Certainly that is crucial. But honestly it is a very small part of the treatment process, the rest of the battle is the day to day management, which is the psychosocial reality. This is where child life plays a significant role, and fortunately for us, when we were at Georgetown, there was a Linda Kim. I think people have some misconceptions about child life as being the women in the hospital responsible for play, babysitting, fun, and parties. Certainly there is a component of child life that encompasses this, because the work of a child is PLAY. But child life professionals are just that.... professionals who are well versed in child development, distraction techniques, workings with children in medical crises, medical play, advocacy, and normalizing very challenging situations that can arise for children with life threatening illnesses. 


Quote of the day: The only people who think there is a time limit for grief, have never lost a piece of their heart. Take all the time you need. ~ Unknown

I had the opportunity today to visit Mattie's school and set up for tomorrow's class on Picasso. As I entered the campus, I could see Mattie's tree. Before Peter and I left for Florida, we ventured on campus to place an orange ribbon on Mattie's tree for his birthday. However, during that visit it was hailing. Today the sun was shining and the tree was starting to show the signs of spring. Since this is a new tree, I have no idea what its leaves look like. So I am anxious to see Mattie's tree unfurl its leaves. However, the orange bow and ribbon looked lovely blowing in the wind, along with all the other ornaments and chimes hanging from it. 

While setting up for tomorrow, I had a lovely conversation with Donna and even got to see Leslie, Mattie's kindergarten teacher. Since I have done this for four years now, I have gotten to know some of the other faculty members in the building as well. I spent some time in the faculty lounge today with Donna cutting out shapes for our Matisse cutout project next week. Donna and I were busy chatting, as only educators can do. Some how educators can find a way to talk about anything. We have diverse interests and we find so many things stimulating. But Donna and I are also intrigued by feelings and the art of conversation and how you teach such skills to developing minds. So we had art and stimulating conversation today. Of course in the midst of this, Donna always talks about Mattie and the Foundation, which means a lot to me. Donna keeps me connected to children, to the kindergarten classrooms, and to the space in which Mattie once occupied. 

When I got home today, I received a video in my email in-box entitled, "My rules, my game, my rules." This was a video clip Linda (Mattie's child life specialist) captured of Mattie at the hospital. Linda wanted me to know that "Mattie's memory is always alive at Georgetown!" I enjoyed seeing this today, and frankly I don't remember this moment at all. Which means I most likely wasn't in the playroom, and Mattie was interacting with the child life staff. I rarely left Mattie unsupervised. I only would leave him with certain people, Linda of course being one of those people. Check out the link below.... This was Mattie..... bold, fully on, and directive. Linda understood Mattie. I can still hear Mattie calling Linda's name in the hospital. It wasn't just "Linda." It was more like, "LIN....DAAAAAA!"
https://www.dropbox.com/sh/jd1ngq7kgq9cx9f/-Rsp4fIXqI#lh:null-100_0889.MOV

Monday, April 7, 2014

Monday, April 7, 2014

Tonight's picture was taken in April of 2009. We were home between hospital visits. Though these were moments I typically did not capture on the blog, these were more typical moments than the happier times typically portrayed. There were many unhappy, sad, depressing, sickly, upsetting, and overwhelming times that we lived through at all hours of the day and night. Mattie not only was dealing with cancer, he also had profound disabilities that needed to be managed and cared for, which together made for an absolutely challenging, scary, and exhausting combination 24 hours, 7 days a week. Some families couldn't wait to get discharged to go home, I on the other hand found going home daunting because there was no medical team and other social supports to help us around the clock with IVs, medicines, and pain management.


Quote of the day: The marks humans leave are too often scars. ~ John Green, The Fault in Our Stars


One of our blog readers left me a comment today asking me whether I have read John Green's book, The Fault in Our Stars. I have to admit as of last year, I had no idea who John Green was, I don't feel too badly about that, after all, I am not a parent any more and I am not raising a young adolescent. However, my 16 year old friend, Isabel, introduced me to The Fault in our Stars. In fact, she lent me her book, and I admit to reading the first few chapters. I haven't finished reading the book yet. This is not a commentary on the book. This is a commentary on the way my mind works now. I read various books all at one time and depending upon my mood, I book hop. I was never like that prior to Mattie developing cancer, once I started a book, I wanted to finish it, and it would never have dawned on me to begin another one, without completing the one I was reading. All that has changed! 

The funny part about The Fault in our Stars is now that Isabel has introduced me to it, it seems like many more people have placed it on my radar scope to read. Not just teens but adults as well. I have to admit the chapters that I read captured my attention because the dialogue between teens regarding their cancer diagnosis, the fears, thoughts, feelings, and candor seemed quite accurate. Especially the out of touch banter in the support group, which caused me to bob my head up and down in frustration. The book introduces many readers to, osteosarcoma, since one of the teens in the group had bone cancer. Besides exploring the inner world of cancer from a teen's lens, it is the story of finding love, understanding one's self, finding courage, and appreciating the healing power of the human connection. At some point, I look forward to reading the rest of the book, and truly being able to respond to the question posed to me today.  

This week, I begin my annual kindergarten art class at Mattie's school. I started this back in 2011. Donna, a teacher at Mattie's school reached out to me to have tea in the Fall of 2011. Donna was not Mattie's teacher, but she was quite familiar with him, since Mattie's classroom did many activities with Donna's class. Over tea, Donna and I chatted about various things and Donna wanted to know what things interested me in order to bring me back into the classroom. Donna knew I was a teacher by training and also knew that I was active in Mattie's classroom when he was in kindergarten. I am not sure if Donna really thought about this at the time, but in many ways, Donna inviting me into her class is really a gift. It is the only real time I get to spend with children now. In my mind Mattie will always be 5 years old and in kindergarten and when I interact with Donna's children, it reminds me of the days when Mattie was back in school. 

Back to that day we were having tea........Well one thing led to another, and the topic of impressionism came up and the kid's story book entitled, When Pigasso met Mootisse (http://www.amazon.com/When-Pigasso-Mootisse-Nina-Laden/dp/0811811212/ref=sr_1_1?s=books&ie=UTF8&qid=1396921883&sr=1-1&keywords=when+pigasso+met+mootisse) was mentioned. Donna told me she always wanted the children to learn more about Picasso and Matisse, more than what they could gleam from the story book. So literally with that, I went to the library, did a ton of research, developed power points and basically created curriculum for five and six year olds. NOT my age group as an educator, but I did it!  

I have had the honor of working with Donna for four years now. I teach the children over three weeks. The first week, is always a bit rocky, because they are not used to my style. I lecture! Not unlike at the university. So they have to sit and listen and pay attention. I use slides and ask them to participate. Then there is always a hands on activity where they get to create, followed by a snack. It is a three step process with me. By week three, they totally get it, and you just wouldn't believe how much information they retain! I remember teaching at the university level, retention was low from week to week. NOT true with five year olds! They are like sponges!!!! So my next three Wednesdays will be busy, and in preparation for my busy Wednesdays, I always go to school on Tuesday afternoons to set the class up properly so we can hit the ground running on Wednesday morning. With that age group you have to have all your ducks in a row. Otherwise chaos can ensue and you really want to make this a fun, educational, positive, and memorable experience for the children. As Donna always tells me, there are children she meets now who are in third grade who are still talking about the time they learned about Matisse and Picasso in her classroom. Which makes us both smile! 

Sunday, April 6, 2014

Sunday, April 6, 2014

Tonight's picture was taken on April 4th of 2009. Mattie's 7th and last birthday. Mattie celebrated his birthday in the hospital and several of his closest friends came to visit him and celebrate the day. Surrounding Mattie were from left to right, Abbie, Zachary, and Charlotte (Campbell was also present, but you just can't see him in this photo). Each of Mattie's friends were helping to open up gifts and to make the day as memorable and fun as possible for him. Remember as healthy children they could all run around and be kids. Mattie on the other hand could barely move, yet his close friends learned to find a way to make this work and keep Mattie included.  


Quote of the day: Life is difficult. Not just for me or other ALS patients. Life is difficult for everyone. Finding ways to make life meaningful and purposeful and rewarding, doing the activities that you love and spending time with the people that you love - I think that's the meaning of this human experience. ~ Steve Gleason


It was a beautiful sunny day in DC. As you can see our daffodils are out in full force. Peter went out to photograph them today. They certainly give our commons area a springy feeling. 

It is an adjustment to be home and I find that it saddens me to know that Mattie's birthday has passed, that Mattie's friend Jocelyn has died, and that I continue to have headache pain. Pain which doesn't seem to ever want to go away. My neurologist says I need patience, that I had pain for 12 years, that pain doesn't just go away over night. My expectations are low. Because I don't plan on it going away period. If I should get so lucky, I would deem this as a medical miracle. I don't believe in those any more. 

Daffodils to me are a happy flower, not unlike the sunflower. Happiness is certainly needed in our lives. Birthdays to me are now very unhappy occasions. Especially Mattie's birthday. The birthday of a child signifies that the child is growing, maturing, and hitting another milestone. I see it in Mattie's friends, I hear it in the reflections of other moms as they talk about their children. Unfortunately I do not get to see it within Mattie. Some may view me as stuck, angry, bitter, hostile, or you name it. I have heard it all. Naturally I think it is very easy to label me, it is safer that way. Blame me! But at the end of the day I think it is very hard to walk in my shoes and am thankful that most don't. 

I end tonight's posting with what I entitle, "Happy faces!"