Wednesday, October 8, 2014

Wednesday, October 8, 2014

Tonight's picture was taken in October of 2007. We took Mattie to one of the local Fall Festivals in the area and as you can see he was enjoying one of the very long slides. This was a wonderful sight for Peter and I to see because it took a while for Mattie to get to the point that he LOVED slides. When Mattie was a toddler he was afraid of slides and did not want anything to do with them. In fact when we first took Mattie to the Fall Festivals he went down these slides with Peter. As he got older, he zoomed down them by himself. However, I always had Peter up top with him and I was always at the bottom taking photos. I wanted one of us near Mattie at all times, but of course there are some things you can't protect your child from, such as cancer. A reality we learned all too well.  



Quote of the day: The worst type of crying wasn't the kind everyone could see--the wailing on street corners, the tearing at clothes. No, the worst kind happened when your soul wept and no matter what you did, there was no way to comfort it. ~ Katie McGarry



This evening I went back to Virginia Hospital Center to take another test to figure out what is causing my pain. While sitting in the radiology waiting area, there was a little boy running around with his parents. This fellow was a live wire with a bad cough. I was distracted with my own pain and a very full bladder as one of the tests I was awaiting was a sonogram. Yet this little one just made me laugh, so I decided to ask his mom how old he was. I learned he was 15 months old. Needless to say, he was at the hospital to get a chest x-ray because of his cough and congestion and like any mom, she was concerned that her son was going to have to sit still and undergo a scan without her. Clearly she saw me in the waiting room sitting by myself and I would imagine she deduced I had no idea what she was going through. Unfortunately I knew the angst she was feeling! If I wasn't called back to my test, I would have given her some strategies because I know this Hospital does not have a pediatrics program nor any child life specialists on hand. Yet I have learned a thing or two about surviving scans with a child. 

In an ideal world, what this mom needed tonight was Linda, or a Linda equivalent. Linda was Mattie's child life specialist, and a person none of us could have done without. The beauty of a child life specialist is this professional could have helped this child tonight prepare for the x-ray, distract him up until the point of the actual x-ray, and would have educated the x-ray tech on the best strategies to work with a child to get the scan completed. If you think a child just sits still even for an x-ray, you would be wrong. Everything about a scan can be frightening, daunting, and scary. Even if a child isn't scared, sitting still maybe hard to do or even uncomfortable. Now add to the equation NOT feeling well and that makes everything much worse. Fears are compounded when you aren't feeling well, if you doubt what I am saying, think about this the next time you are in a hospital undergoing a scan! Then imagine how a child must feel unaccompanied by a parent. 

As for myself, I worked with an absolutely lovely tech tonight who couldn't have made the entire process go more smoothly. As is typical with Virginia Hospital Center, everyone really tries to accommodate your needs. I don't know how they seem to manage this but this customer interface needs to be a model that should be adopted at other institutions. I know it makes a big difference to my mental state when I know I have more compassionate people around me who are listening to me when I am not feeling well. I know I am not an outlier on this front and I just wish more hospitals would embrace this philosophy because it does make a difference in the quality of health care. 

Tuesday, October 7, 2014

Tuesday, October 7, 2014 -- Mattie died 265 weeks ago today.

Tonight's picture was taken in October of 2007. We took Mattie to Butler's Orchard in Maryland to go pumpkin picking. After picking a pumpkin right off the vine he went into their barn and literally had a ball jumping into the hay! The ironic part about all of this was when Mattie was at his first preschool in Washington, DC, we came to this farm as a field trip. All the kids loved jumping and playing in the hay except for Mattie. However, looking at this photo, I am sure you wouldn't have known this fact! That is because by 2007, Mattie was a completely different kid. I strongly believe that with early physical and occupational interventions and providing him with positive social and emotional environments, Mattie was able to develop to his full potential at a very early age.


Quote of the day: The greatest gift of human beings is that we have the power of empathy. ~ Meryl Streep



When my doctor left Washington Hospital Center, believe it or not, the Hospital never called me or even sent me a letter to tell me that my doctor had left. They did not alert me that she left nor did they alert me of her replacement. The only reason I knew she left is because my friend also happened to see this same doctor and when I met with my friend this summer she alerted me and also gave me a head's up that our doctor was relocating to Baltimore! She knew this information because she had recently seen this doctor right before her departure. Of course when a doctor leaves a hospital, she can't take her patients with her per se. But there are some doctors who you have a special relationship with in your life, and an oncologist is just such a doctor. In my perspective driving to Baltimore today was worth the three hour round trip car ride. This is a person who has been working with me since 2012 and knows my history and also understands the stresses Peter and I have lived with and continue to live with. That to me means a lot. 

Naturally you know I am going to have a funny story, because, I can't visit an office without having one, can I?! Before seeing the doctor, her assistant came in and took my vitals. After she took my blood pressure, she looked at Peter and then looked back at me and asked me why I looked so sad? At which point I told her I was sad because I had to be back here visiting the doctor. She let that be absorbed for a moment and then she asked why I was visiting. I told her my symptoms and that I was in pain, she began to connect the dots. After she left the room, Peter commended me on not popping her one. I told him I was very perplexed by her question since the office we were in was an oncology office. How could one NOT be sad???

I later learned from my doctor that many of the patients who come to the office are in post-treatment, meaning they are in survivorship mode. Which may explain her assistant's attitude. Yet to me this is still quite judgmental since there are a host of issues even in survivorship. Of course survivorship could look different for adults than it does for children. It isn't pretty for children at all because survivorship is fraught with many long term and in some cases serious health issues! I told my doctor that her assistant should consider herself lucky that I did not have my full game on today. I am much more aggressive as a caregiver than a patient. 

Any case, I am going for more testing tomorrow and hopefully will know more. She put my biggest fear to rest today and gave me some ideas about what the issue is that I could be dealing with. So having a plan is a great thing and knowing I have someone who is working with me on this plan and will be taking me through the steps of the plan makes me feel better. Someone I know I can trust. But right now I have two medical issues going on simultaneously and it was very important for me to tease out what was causing which pain and to make sure I had a doctor to turn to for help on both medical issues. 

Monday, October 6, 2014

Monday, October 6, 2014

Tonight's picture was taken in October of 2007. We took Mattie to a pumpkin patch at Butler's Orchard in Maryland. One of his favorite farms --- where he got to ride on a wagon which took us out to a field to pick a pumpkin right off the vine! Butler's Orchard was an experience filled with a corn maze, a barn filled with hay for the kids to jump in, and just a lot of old fashioned fun! 


Quote of the day: Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving and tolerant with the weak and wrong. Sometime in your life, you will have been all of these. ~  Gautama Buddha


I went to Virginia Hospital Center (VHC) today to get testing done of one of my issues. Going to VHC is always an experience. It is a very different hospital experience for the most part, though I don't want to be there either. No hospital is better than any hospital. PERIOD! However, VHC for the most part at least tries to have a customer service interface that helps! Naturally when you aren't feeling well, dealing with a friendly face can make a huge difference. 

Sitting in outpatient lab services today, I can safely say it was a zoo! I must have been there two hours waiting to get tests done. However, the woman who was overseeing the process and taking names and processing us through the system was stellar. She made the experience and she reminded me of Budda's quote tonight. She helped everyone! The young, the old, the frail, and she was sympathetic to all of our needs! I really think without someone like her, the crowd could have gotten totally out of control and unruly. But she kept thanking people for their patience, updated each of us on our wait, and she helped me by allowing me to go to the restroom several times! So she and I were already on the same page! 

In the midst of one hospital experience today, I worked it out so that I can see my other doctor tomorrow. She happened to have relocated herself to Baltimore. But Peter and I are making the trip to see her and I am happy that she is fitting me in because I do not think I could handle the anxiety another minute longer. I remember reading research about the physical impact of caregiving and grief on people when I was in graduate school, but now I am a living case study. It feels absolutely awful and I can't stand the constant medical scares, not to mention the taxing nature of feeling ill. All in all, it is absolutely draining on all levels and truly hard to describe.

Sunday, October 5, 2014

Sunday, October 5, 2014

Tonight's picture was taken in October of 2007. I will be posting a series of photos this month of Mattie going to all sorts of Fall Festivals. At each festival, Mattie always came home with a pumpkin and other goodies in hand. As you can see at this particular festival, Mattie was intrigued by the orange VW bug and posed for a photo in front of it. There was no telling what would be featured at each festival, which was what made them so entertaining, not to mention Mattie's reaction to each sighting and experience at them!


Quote of the day: The only thing we have to fear is fear itself. ~ Franklin D. Roosevelt

Though FDR's quote was not spoken in the context of illness, it nonetheless could very well apply! When you aren't feeling well, fear can take over very easily and your mind can run wild with all sorts of worries as to what could potentially be wrong with you. Unfortunately in my case, I have all sorts of reasons as to why my mind wanders, I lost Mattie to cancer, and I have seen the unexpected can and does happen! Second of which, after I lost Mattie, I went through my own cancer scare which was monitored for over a year. Now I am dealing with kidney stones and that is bad enough but this weekend, another symptom has arisen and the whole fear that started the cancer scans in 2012 is being called to the table again. So needless to say, FDR's quote speaks volumes to me today. This type of stress, I literally can't handle!

I wasn't up for much today and Peter tried his best to divert my attention. Which wasn't easy. The one thing I did leave our home for, was to visit Mattie's tree. His plaque has now been moved to his new tree location!

Mattie's Tree has now lost its gator bag as the colder weather is approaching and it is being braced with posts for support. You can now see the plaque at its base. So the tree now seems very ready to meet the colder weather months that are approaching. 

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.