Saturday, October 4, 2014

Saturday, October 4, 2014

Tonight's picture was taken in October of 2007. In the Fall, it was a tradition to take Mattie to fall festivals where he could pick pumpkins, ride on wagons, play in the hay, go down slides, and in some cases ride on ponies. When I was growing up, there weren't activities like this in which farms would transform themselves for a month and provide fun activities of all kinds that appeal to members of the entire family. With Mattie, he gave us the opportunity to experience a second childhood. However, anytime you were with Mattie, you learned something! Which is why I always say he was my greatest teacher.


Quote of the day: The greatest distance in the world is the 14 inches from our minds to our hearts. ~ Agnes Baker Pilgrim

I woke up today and wasn't feel well. I debated between calling the doctor's office or trying to manage. Since I just saw him days ago, I figured there is nothing else he is going to do for me until all the testing is done. So I just have to come to terms with this. But when you are not feeling well, the whole thing can spin out of control quickly especially when you have other things on your mind that are weighing you down. 

As the sun came out, we went out for a walk today. Walks, I find are good for me on many levels, especially when I spend a great deal of time cooped up in front of a computer all week focused on childhood cancer issues. It can be very isolating and challenging at times. Naturally when the final product is written it is a wonderful achievement, but while the process is happening, it isn't easy. In any case, we headed to the Washington Monument and the Lincoln Memorial today. 

The two mile walk was lovely. There was a choir singing in front of the Lincoln Memorial and we stopped to listen to them. 

The beauty of the Lincoln Memorial! I remember taking Mattie to the memorial several times, but the one thing Peter and I have never done was to walk around the outside perimeter of the monument. We have lived here for years, and have never done this. So we changed that today!

From the outside perimeter of the Lincoln Memorial, there is a wonderful view of the Memorial Bridge! A bridge I traverse all the time to drive into Alexandria, VA! Every time I come back from Alexandria, I see people on the Lincoln Memorial taking photos from this exact spot! Today we walked around the Lincoln and saw this bird's eye view! 

In order to take the above photo of the Memorial Bridge, this is the spot where we were standing on the Lincoln Memorial. Peter took a perspective shot so you could see just how far up I was and how grand the columns of the Lincoln Memorial are!

From on top of the Lincoln Memorial, you can see the Washington Monument and the US Capitol in the distance. 

When we got home, I decided to snap a photo of Mattie's paperwhites! They all are blooming in this Fall sunlight. We planted them around September 8th, for Mattie's fifth anniversary of his death. Though this is our complex's common space, we use this patch of dirt to remember Mattie!

In fact, these are
"Mattie's trees!" They are located in our complex's common space as well. When Mattie was a preschooler, he and Peter planted all these trees and bushes! They were TINY back then!!!! Now some of them are 11 feet or taller. I can see all of them from my window, when I work at my desk. The bird feeder, belonged to my 85 year old friend Mary. I gave it to her before she died this March. I plan to fill these feeders this winter and when I see the birds fluttering about it will remind me of my friend Mary. In many ways this whole plot of land outside of our home is a memorial garden!

Friday, October 3, 2014

Friday, October 3, 2014

Tonight's picture was taken in October of 2007. This was classic Mattie! Sometimes he got tired of my need for photos and when he did, his arms would come up and this was what I would get. As you can see he was laughing and having a good old time while covering his face and avoiding the camera!



Quote of the day: Unexpected kindness is the most powerful, least costly, and the most underrated agent of human change. ~ Bob Kerrey

I received this email today from my friend Charlie with a link to a story that had this photo in it. The story was about this young girl who decided to take rocks, transform them and give them out to people in her local mall. The rocks came with a birth certificate and a poem. She entitled her self created project, Kindness is contagious. It was a very touching story because she literally was giving away her crafts for FREE at the mall and people at first did not understand her intentions. They thought she wanted money or a donation. However, when they finally understood that she just wanted to make someone happy, the reactions were touching! Some people cried, some people smiled, and some people just felt very special to be going home with a gift created by someone they did not know and with a gift they did not pay for. I think this girl reminds us that gifts can come in all shapes and sizes, but the true gift here came from the heart. 

Though Charlie sent me the story because of its touching nature, she also sent it to me because she thought about Mattie as soon as she saw the stones. She had a feeling that Mattie would have transformed these stones right into bugs with the help of a hot glue gun! Bugs were something that intrigued Mattie to no end and I am not sure if he actually loved them or he loved watching my reaction to them!

Any case this story brought a smile to my face today which I needed since I haven't been feeling well and was also glued in front of the computer trying to write! Not the best combination!

Thursday, October 2, 2014

Thursday, October 2, 2014

Tonight's picture was taken on October 7 of 2007. We took Mattie to a park alongside the Potomac River that weekend. As you can see Peter brought along a soccer ball. He was trying to encourage Mattie to develop his skills as a player. Mattie was more like me, in that he was intrigued by the dogs and the people in the park, but he did play with Peter because he loved his "daddy" time. Peter never pressured Mattie to do a particular activity, he tried to expose Mattie to a host of different things so that Mattie could figure out what he liked and what interested him. 


Quote of the day: Nobody sees a flower - really - it is so small it takes time - we haven't time - and to see takes time, like to have a friend takes time. ~ Georgia O'Keeffe


I finally had the opportunity today to see a nephrologist. Which seemed like a feat in and of itself, since his receptionist last week told me that his next opening wasn't for several months. Somehow the stars and planets aligned and I was seen today. This particular specialist is in his 70's and in my opinion is an old world doctor. Some how either medicine was taught differently back then, or we have lost something in the translation now. This doctor spent an hour with me and actually sat down, had a conversation, listened, took a thorough history, and we learned something about each other. Before he even came in the room, he knew from my file through my other doctor's office that I lost Mattie through cancer. He made a note of that! What a concept! Not only did he make a note of that, but we discussed it and he also observed my Pandora bracelet and when I told him it was a memory bracelet in honor of Mattie, I thought he was going to lose it! He couldn't handle the subject matter. 

I discussed kidney stones, the next assessments he would like done, and what I need to do moving forward before my next appointment. But what I loved about him is he held my hand and told me that his job is to worry about this problem and to make sure other stones to do arise again. My job is to implement the strategy he creates. He literally walked me to the door of the office and told me he was available any time to consult with me. At which point I told him, we needed to clone him and by the way his office staff are just as delightful as he is! He has restored my faith in doctors! Occasionally you find a golden egg in the basket and when you do you really see how lacking the others are! This personal attention, compassion, and being treated as a person makes a huge difference! This is the art of medicine and it has a lot to do with the science of healing. 

When I came home later in the day I noticed the paper white bulbs that we planted around Mattie's fifth anniversary of his death were blooming. We planted these bulbs so that they would surprise us in the spring around Mattie's birthday, but because of the warm temperatures, many of them popped up and out this week. Also very close to the paper white flower, I also found a penny! So I figured this was a Mattie sign. 

I continued to write today, though I wasn't as productive as yesterday and the day before. So I plan on writing tonight, in hopes of getting more done. Nonetheless, while writing this afternoon, that wonderful monarch butterfly that I saw on Tuesday flew by Mattie's window and it brought a smile to my face! Several Mattie signs were all around me today and I don't take them for granted!

Wednesday, October 1, 2014

Wednesday, October, 1, 2014

Tonight's picture was taken in October of 2007. There was a Fall Festival at Mattie's School and though he was only at this particular School for a month by that point, he already had friends and wanted to attend the event. This was truly wonderful because leaving Mattie's preschool community was very hard for us, and even Mattie did not want to leave preschool. Mattie met his buddy Kazu (in orange) in the summer of 2007, when I enrolled him in a half day summer camp. That was my strategy to help Mattie get to know children at the school before the Fall of 2007! In this photo is also Campbell (with the white t-shirt), who Mattie met in his kindergarten class and they became close friends. The two girls pictured here are Bethie (Kazu's sister) and Livi (Campbell's sister). Needless to say they all had a great time together at the Festival, running around, getting their faces painted, and going on moon bounces. 


Quote of the day: Start writing, no matter what. The water does not flow until the faucet is turned on. ~ Louis L'Amour


I started writing yesterday and today I spent the day at home by the computer. I continued writing and putting my thoughts together. Fortunately things are flowing which I am happy about. I was really struggling for the past several weeks. I have carved out more writing time for the rest of the week too and have tried to identify targets of what I want to accomplish each day, so I am hoping I can meet them. That would certainly put me in a much better mental state and on the trajectory to having some sort of draft by my deadline. Having done a chapter this summer certainly helped because a lot of the research was already accumulated and the structure of how to write a chapter was already fresh in my head. Nonetheless, the discipline of sitting still and trying to get my thoughts across is tedious and at the end of the day I want to completely disengage from the computer. 

Tuesday, September 30, 2014

Tuesday, September 30, 2014 -- Mattie died 264 weeks ago today. 

Tonight's picture was taken in October of 2007. That weekend we took Mattie to Glen Echo Park in Maryland. Mattie enjoyed going to that Park because he loved seeing the puppet show company there and riding on the Dentzel carousel. There was also an old fashioned street car on display that Mattie loved exploring. It was a Park that really had something for all ages! When Mattie was a toddler it was very hard to engage his mind and body at the same time. Yet the puppet company at the Park always caught his attention. Mattie was fascinated by the creativity of the puppets, the stories, and this kept us going back for each and every show they performed throughout the years! Peter and I haven't been back to this Park since Mattie died. Tonight I went back to the Park's website and noticed that ballroom dancing classes are offered in their Spanish Ballroom. This intrigues me because on Saturdays the Ballroom features dances with a live orchestra. 


Quote of the day: A butterfly is like the soul of a person, it dries out in captivity. ~ Marlene Van Niekerk, Agaat

I finally was able to begin writing the book chapter that I have been struggling with. That may not sound like a big deal, but to me this is a momentous occasion. I have had a very serious writer's block. I have been having trouble concentrating, reading, sitting still, and certainly focusing on writing was impossible.  

This weekend, what first started to help release this block was Peter and I spent about an hour chatting through the book chapter and we talked through ideas and put thoughts into words. This began to help me think through some of my stuck feelings. 

Then today I received an email from my friend Linda and she said to me to basically try to write and let Mattie guide my insights. Somehow that is what I needed to hear as I sat to try to tackle the introduction of the chapter, which I am still working on tonight. But while I was writing, guess what I saw? YES a monarch butterfly! This butterfly flew by my window ALL afternoon. I took that as a direct message from Mattie as his inspiration and guidance to me as I began crafting this chapter. Unlike the chapter I wrote this summer, this chapter is a parent perspective. In essence...... to share insights on what Peter and I learned from Mattie's cancer experience that will help other mental health providers working with children who have cancer and their families and then explained what caused us to be advocates and start a Foundation and National Psychosocial Standard of Care project. 

The parent perspective of having a child with cancer is SO important and yet when you turn to the research literature there is a void of any data. As if our opinions don't matter in a way, or at least havent' been captured. Which maybe why I feel a great deal of pressure writing this chapter. I am being given the chance to have a voice, when there really aren't many voices out there in the peer reviewed literature. Naturally of course any time this voice expresses Mattie's story, well then that is cause enough for me to make sure that the writing is well done. So this all gets factored into the equation and has stymied my ability to write for quite some time. But I am holding onto the thought of being guided by Mattie and that beautiful butterfly that I saw today! 

Monday, September 29, 2014

Monday, September 29, 2014

Tonight's picture was taken in May of 2007. This photo actually is a follow up to the picture I posted on Saturday! It was taken in the same location, at one of Mattie's favorite restaurants in Maryland. As you can see it had a pond with turtles and fish right in front of the restaurant. We were posed for a photo while sitting on "Mattie's rock," as I call it. In fact we sat on this rock for many photos. Our Christmas photo of 2005 for example! Tonight's photo was from Mother's Day of 2007. Each time I go back to this restaurant and see this pond and this rock, I can't help but think of all our Mattie moments. But the mind has a way of playing funny tricks on you, because it seems like such a long time ago, in which I sometimes pause and wonder was I really Mattie's mom? I suppose writing about Mattie and talking about him each day on this blog keeps him very much alive for me, but what if there were no blog? It would be a problem, because there aren't daily reminders and conversations about Mattie happening otherwise. 


Quote of the day: To be of good quality, you have to excuse yourself from the presence of shallow and callow minded individuals.  ~ Michael Bassey Johnson


I had quite the unexpected phone call today! My home phone rang and I could see on my caller ID the name of the caller. I somewhat recognized the caller because I thought it was Mattie's play therapy practice that worked with him years ago. Way before Mattie developed cancer! During the years when we were struggling from the aftermath of Mattie's first preschool dismissal and with his sensory integration issues. For those of you who missed my previous explanation on the blog for why Mattie was dismissed from his first preschool, it is a long story. But it was a poor fit between Mattie and the school, and the director of the school in my opinion was not only unstable but she brought the worst out in Mattie. Therefore he responded accordingly. Mattie, when provoked, could dish out as good as he felt he received. As a result he literally bit the director and another child at the school.

Any case, back to my current story. The phone rang and it was the receptionist from the play therapy practice. She greeted me as Mrs. Brown and said she was calling to make a follow up appointment for Matthew. I basically told her I did not know what she was talking about and that I was sure she contacted me in error. She then said good-bye. Not two minutes later, she called me right back and again insisted she needed to make an appointment for Matthew! At that point, I gave it to her. What obviously happened is the office has another patient named Matthew Brown and she has confused the phone numbers..... but that is a huge mistake in my opinion. Now I am not sure what is more upsetting the fact that she called me twice insisting on making an appointment for Mattie, or that she has reminded me of the times I had coming to her office and all that Mattie and I achieved together prior to cancer, or perhaps what set me off is that she did not even know that her former patient died???????????? But I think what TRULY troubled me is once I explained to her that Mattie died (and they worked with him for over 6 months) and that I found her calls upsetting, she did not have much to say to me in return. I clearly caught her off guard and she was silent and couldn't wait to get me off the phone. 

This phone call has remained with me all day. When Mattie died, I would like to think the whole world understood and felt this profound loss. That everyone who knew Mattie recognized that on September 8th he lost his life. But that isn't the case, there are still people in our lives who we come across who have no idea, and it is hard when you cross paths with these people. It reminds me of when I met someone recently who knew me from my university days. This person still thought I worked at the university. Where do you begin with these folks? How different my life is now from back then, and I wouldn't even know how to describe how I am or what I am doing now! I can't go back to my former days, and I wouldn't want to. I am a completely different person.
  
I just wonder, if the person on the other end of the phone today had been more human (and concerned about me), would I have felt different tonight? Naturally how she treated me, one way or the other, doesn't change my overall circumstances. That will be exactly the same! But I do think how we treat our fellow human beings make a huge difference to our quality of life. I also know that managing and coping with grief has a lot to do with the degree of support we receive from those around us. At least I would have felt heard and I would have known that she acknowledged this loss and was sorry to hear that a patient from their office died. Instead, I felt nothing! Which is not a good place to be in. Honestly, she should consider herself lucky that I am not feeling well and I have to conserve my mental energy to write this book chapter. Otherwise, the art of empathy and patient relations would be my next stop on my to do list with her supervisor. 

Sunday, September 28, 2014

Sunday, September 28, 2014

Tonight's picture was taken in August of 2007. I will never forget this moment. Mattie and I went over to his friend Zachary's house. Zachary's nanny, Sara, just had a baby. When Mattie was in preschool, Mattie and Zachary played practically everyday after school together. They were the best of friends. Because they spent so much time together, by circumstance so did Sara and I. Sara and I got to know each other quite well and I actually trusted Sara with Mattie. Which was saying a lot because I was very protective of Mattie. But I liked Sara's caregiving style and since we spent a lot of time together, I knew how she handled practically every situation and she also managed disagreements between Mattie and Zachary very fairly. As you can see in this photo, Mattie got to hold the baby. This was Mattie's first and last experience holding a baby. He seemed to really enjoy the whole process. On an aside, years later after Mattie died, I had the opportunity to meet Sara's baby, who grew up and by that time was Mattie's age. When I met him, he reminded me so much of Mattie, it was uncanny. Rather ironic how that all worked out. 


Quote of the day: You are what you do, not what you say you'll do. ~ Carl Jung

Peter and I have decided this Fall to visit Mattie's tree every weekend until we have our first frost. We feel the need to nurture the tree through the Fall and most likely will do the same thing once the Spring comes. The only way to truly know how this tree is doing is to observe it for ourselves. So every weekend we visit and water it ourselves. We placed enough mulch around this tree so that I do not need to see weeds growing around it, which truly upsets me. I don't like seeing weeds around any tree, but weeds around a memorial tree bothers me deeply. When we got to the school, there were children playing on the playground and running all over the place. That is always a sight to see and become adjusted to. We go on the weekends, because school is not in session. But naturally people from the neighborhood come onto the property and use the playground, which is understandable, since the campus is delightful. A part of me would much rather be bringing my child onto the playground to play rather than be coming to visit a tree which symbolizes the life of a child that once existed.   

This morning, Peter and I spent a part of the morning outside on our deck. We had breakfast out there and he had me laughing. He knew I would be cold, so literally he brought out a space heater. He used to do that for Mattie when he had cancer! Mattie wanted to play in his sandbox during the winter, between cancer treatments while he was home from the hospital. So Peter would bring out the heater with an extension cord. We would bundle Mattie up and out we would all go on the deck. Of course we had to make sure Mattie's central line (which was connected to his chest and was how Mattie received all his chemotherapy and medications) was fully covered and protected, so it wouldn't get full of sand. Any case, as the space heater came out today, I couldn't help but remember our times out on the deck with Mattie. 

I find it rather ironic that when I woke up this morning, I had a very vivid dream of Mattie. Which I shared with Peter. Typically I can't remember my dreams, but in this one Mattie and I were holding hands and he needed a diaper change. However, I had nothing with me to change him (totally not like me!). So literally I am walking with him from room to room, building to building, trying to find his diaper bag or cubbie of things. In my dream some of the rooms were familiar and at times others were completely new and unfamiliar, and yet we just kept walking through them exploring them looking for this things together. It was the most bizarre dream, and yet it seemed quite real and vivid. In a way, I felt as if I could hear his voice, hear his stories, and so forth as we were negotiating our way through the rooms!