Saturday, July 21, 2018

Saturday, July 21, 2018

Tonight's picture was taken in July of 2009. Looking at this photo, you maybe asking yourself.... what was going on? Mattie was playing with his two closest friends in cancer, Brandon and Jocelyn. They were all in clinic and trying to entertain Mattie by building boats and then having boat races in the clinic's sink. I am not sure what I found more amazing about this scene..... the fact that Mattie's friends were so much older than him, yet they all got along, or that Mattie was so ill and yet despite how he felt, he got up out of his wheelchair to play and interact with his friends. Now that's amazing!


Quote of the day: If you’re searching for a quote that puts your feelings into words – you won’t find it. You can learn every language and read every word ever written – but you’ll never find what’s in your heart. ~ Ranata Suzuki

As I mentioned in the blog earlier this week, I am not a fan of graffiti. On Monday, I was walking Sunny on our usual route, and came across this horrible sight. A sight that only I seemed bothered by. People were passing it by and it did not even register with them. I am not sure how that is possible considering this artistic horror was huge, bold, and offensive. So I reported this to DC on Monday. 

Four days later, the graffiti has been removed. The city even sent me an email yesterday afternoon letting me know they took care of it. I am thankful DC takes these requests seriously as I know the same level of professionalism is not followed when reporting homelessness issues.  

As is typical in DC, because we had three nice weather days this week, we will be paying for it this weekend. It is non stop torrential rain. Only myself and the other dog owners are out and about walking in this! Despite being soaked that did not stop Sunny from wanting to chase rats. That is correct... the rain brings the rats out. Absolutely hateful sight, but I am quite sure given what I have seen that DC has more rats than people. 

Friday, July 20, 2018

Friday, July 20, 2018

Tonight's picture was taken in July of 2009, about a month before we found out Mattie's cancer diagnosis was terminal. Hard to imagine when you look at that smile. While in clinic that day, he and his cancer buddy, Brandon, were playing together at the art table. As you can see Brandon was a teenager and clearly older than Mattie. Yet they had a beautiful friendship with each other. Mattie decided to take items he found in clinic to create a statue. The statue's name was Dr. Crazy Hair. Dr. Crazy Hair sat in our living room for the longest time. What you can't see was the doctor's pockets. The pockets contained all sorts of things. Such as an oyster shell. The shell represented a toe nail that Dr. Crazy Hair removed from a patient. Get the gist!???


Quote of the day: I think perhaps I will always hold a candle for you – even until it burns my hand. And when the light has long since gone …. I will be there in the darkness holding what remains, quite simply because I cannot let go. 
~ Ranata Suzuki

This is how I started my day, with an escort to the bathroom. Indie insists on coming into my bathroom so she can drink out of the sink. Mind you she has her own water bowl. But despite that prefers the sink! 

After I walked Sunny this morning, I decided to water all the plants in our garden. Sunny hates the sight of water. I left the front door open so he could watch the process, but just hearing the hose, sent him far away from the door and up the stairs. The funny part about this is the step is so narrow and Sunny's big body can hardly fit on the step. It is a total riot to see!

While Sunny was on the staircase, Indie was on the piano. The two of them are my daily supervisors!

This afternoon, I went back out to Great Falls to the restaurant I recently celebrated my anniversary. I took my friend Mary Ann out to lunch to congratulate her on her new job. It was a beautiful weather day and we were able to sit outside. In fact, practically every table outside was filled!


When I returned home, Sunny wanted to go back out for a walk. As soon as we left our home, I ran into a neighbor of mine who also has a dog. Though we do not know each other well, she let me know she enjoys spending time with me and loves talking to me. She commented about seeing me outside a couple of nights ago. When I returned from Los Angeles, I was tired and for the first few days was out of it. At 10pm, on one of those nights, Peter wanted me to go outside to look at the moon. I was in my pajamas and was ready for bed. But before I went upstairs, I did go outside. Don't you know it, while sitting outside in my pajamas my neighbor comes outside to walk her dog and sees me. So she came over to chat with us. Needless to say, she commented on this interchange today, because she said the sight of me in my pajamas made her feel like she was home. Part of a community and unlike so many people in the city, I am real. Her comment made me laugh today because I told her she can't find someone more real that me. The moral of the story is that we all want to find people we can connect and feel at home with, and of course it is always special to know you make people happy. 

Thursday, July 19, 2018

Thursday, July 19, 2018

Tonight's picture was taken in July of 2009. About a month before we learned that Mattie's diagnosis was terminal. In this photo we thought our goal was rehabilitation. Thinking that Mattie would be able to return to school that Fall. We couldn't have been more farther off base!!! I honestly do not know how Mattie found the energy to do physical therapy when he clearly was managing a very aggressive cancer. But that was the beauty of Mattie. He taped into incredible inner reserves. In this photo, Mattie was pictured with Anna, his physical therapist. Anna was trying to inspire Mattie to walk again. Notice the whoopie  
cushions all along the floor. These toys were good distractions as Mattie would focus on getting to each one of them. Mattie couldn't wait to step on each cushion in order to make a horrible sound. A sound that would get a reaction out of all of us. 


Quote of the day: Your absence has gone through me Like thread through a needle Everything I do stitched with its color. ~ W.S. Merwin


I got up early today for an 8:30am appointment with my urologist. This woman has been working with me since 2009, after Mattie died. Next year, is our tenth anniversary together. Mind you, I see her every three months. So we have gotten to know each other over the years. Today when she entered the exam room, she seemed distraught. I learned that her dad has Alzheimer's disease and is now living in a nursing facility because her mom, who was caring for the dad, got a stroke. She believes her mom got a stroke from all the heavy duty caregiving. Ironically this seemed like a novel concept to her as she didn't seem to understand the connection between physical and emotional stress from caregiving on one's health. A subject I know all too well, given that this was the subject matter of my dissertation and I also lived the experience as Mattie's full time caregiver when he endured cancer treatment. 

What she was talking to me about today, wasn't the physical issues! Those issues just put the conversation into context. But what she needed to vent were the psychosocial issues. As she is now working around the clock between her medical practice and balancing the care of her parents. Her mom moved in with her and while she is working, she is paying for an aide to support her mom. Nonetheless, she explained the the exorbitant cost of the nursing home and her mom's home care. I listened, but I already knew the answer. Without long term care insurance, getting any sort of custodial support for a loved one is incredibly costly. Her dad was a famous trauma surgeon, and in all reality she admits that whatever money he had will be completely absorbed in their care. A rather sad commentary. But what she said to me that caught my attention was.... now I know how patients feel. EXACTLY! If you interface with the medical system, one thing you learn ASAP is that everything has a price and depending upon insurance, you will either be able to afford care or not. 

Mind you I do not wish any ill on her parents, but I have to say something is very wrong with medical education. Why must a doctor learn about the psychosocial ramifications of illness through such a personal experience? Doctors seemed to be trained to understand numbers, data, and the science of illness, while missing aspects of the whole person coming before them. They aren't trained to listen or reflect on how an illness or disease impacts one's daily quality of life for the patient and family. That is until they experience illness first hand. Then they unfortunately realize how helpless they really are, how their medical knowledge is not going to improve the situation, and in turn they get an up close and personal experience with powerlessness. Welcome to the world of a patient. Though my experiences are with cancer, the psychosocial ramifications of any long term or life threatening illness are similar. I have a feeling she is beginning to see this, which is why she felt she could talk to me today. 

Wednesday, July 18, 2018

Wednesday, July 18, 2018

Tonight's picture was taken in July of 2008, about two weeks before Mattie was diagnosed with cancer. As you can see, he was playing chase with JJ, our resident Jack Russell Terrier. In fact, Mattie and JJ grew up together. JJ was the first real encounter Mattie had with a dog, and JJ inspired him to want a dog of his own. 



Quote of the day: It's hard when you miss people. But you know if you miss them, that means you're lucky. It means you had someone special in your life, someone worth missing. ~ Nikki Schiefelbein


I am slowly digging out of email, as I did not pay much attention to requests while I was gone. I was able to have a peaceful day today to do some work, and in the midst of digging out realized that I have 12 proposals to review for our Mattie Miracle grants. With less than a week to review all of them. So I started working on them tonight. Mind you we received over 20 initial letters on intent and from that only 12 were invited to submit a full proposal to be considered for our $10,000 grant. You should know that a team of researchers are evaluating these proposals, but given that Mattie Miracle is funding one of these proposals, I feel it is my duty to read all of them and express to the committee my opinion.  

What I love about reading proposed research on childhood cancer, is that for me this is a very lived experience. From a pragmatic sense, what researchers are proposing sounds good or even theoretically makes sense. But that is the difference between theory and reality. I know the reality all too well which enables me to read a proposed research study and reflect on my own experiences and experiences of those I have helped to determine.... is this research feasible? Would any child or parent really benefit from such an  intervention? 

Several of the studies are proposing electronic based interventions, given that parents of children with cancer have limited time to meet for support. I can appreciate this because it is true parents are overwhelmed and are managing so much that seeking emotional support doesn't fall high on the list. Yet I continue to be surprised when I read how brief solution focused therapy appears to be effective whether it is supplied face to face with a therapist, or whether the intervention is provided through a computer (and I don't mean emailing a real person, but instead going through an on-line tutorial, like a training program). Every time I read this my head starts shaking! It is shaking because in my opinion the benefits of therapy and support come from individual connections. This is the cornerstone of so many therapeutic theories and philosophies. However, we are firmly planted in the age of technology and as such, I see research too is migrating with the times. 

I know all too well that when Mattie was in the hospital, my cell phone became my main source of support. So much so, that I can safely say that my cell phone addiction began right after Mattie was diagnosed. However, I was connecting with friends with people!!! I wasn't looking to my phone for solutions or clinical support through on line training. Given the nature of childhood cancer and the volatile nature of living with this disease each day, to me the human connection is needed. In fact, some of Mattie's psychosocial providers were successful with us, because they truly worked hard to get to know me, Mattie, and Peter. If they would have offered me electronic support through some sort of on-line program, I would have been turned off immediately. They would have lost me. So I am biased but I am trying to keep my feelings in check when evaluating these proposals as I am aware of the role technology plays in our world today.

Tuesday, July 17, 2018

Tuesday, July 17, 2018 -- Mattie died 461 weeks ago today. 

Tonight's picture was taken at the end of June in 2008. Literally weeks before Mattie was diagnosed with cancer. As you can see, we took Mattie for a walk on Roosevelt Island. That day Peter and Mattie climbed off the boardwalk and onto a fallen tree log. Needless to say, any adventure and especially breaking up the routine was always up Mattie's alley.  


Quote of the day: But nothing makes a room feel emptier than wanting someone in it. ~ Calla Quinn


I think loss and grief are even more challenging to manage as time goes on. In fact the adage that time heals all wounds is simply ridiculous and it is a platitude that the rest of the world spits out at us just for levity purposes. Because the reality is...... time does the exact opposite. 

Surely I can remember back to the first year of grief. Back then grief was physical. It permeated through every part of my body, and just doing the basics was the ultimate chore. However, during the first year, I was just trying to live.... to keep breathing, eating, sleeping, and getting dressed. That is really as good as it gets after losing a child. However, with time, I began to do these daily tasks by rote. No longer did I need help or coaxing to meet my physical needs. However, by year two, the reality of the loss was felt in a much more profound way.... both cognitively and emotionally. It is this later form of grief that takes over and STAYS. I would like to say thoughts and feelings lighten with each year from Mattie's death, but that would be untrue. In fact, I would say each year provides new and unexpected emotional challenges. Take today for example!

I met some friends today for lunch. Two of these women have children who just graduated from high school, and will be starting college in the Fall. I knew they wanted to go shopping after lunch, but I did not put two and two together....to equal... shopping for dorm room items. With me, I can go through the motions and look fine doing it. But it is after the activity is over, that I process what I just experienced and then trouble ensues. I can have a mixture of emotions, such as being sad that I will not have the opportunity to watch Mattie graduate high school, go to college, and do these normal activities. That is on one hand, but unfortunately there is another hand. The other hand is about anger and insensitivity. I can easily feel that people have set me up for these emotional falls, and wonder why they aren't more considerate. After all, if I can go shopping for dorm room items and share in that joy for them, why can't they in return reflect upon how such an activity affects me? 

In the past, my anger would take over and I would or could lash out. Over the years though, I have learned that this can be counter productive. I realize I can never truly help people who have healthy children realize the scope or extent of my loss. I can't change them and at times when I have brought up these feelings, instead of providing insight, it somehow got turned back around on me as having the problem. 

Therefore, the only thing I can do is control my own thoughts and feelings. So the question is how? I have two choices.... remove myself from such activities that could be perceived hurtful or participate and be faced to deal with the consequences on me. In reality, both of these answers are valid, and at times I apply one technique (avoidance) over the other (participation with emotional consequences) depending upon the circumstances and activity. With regard to today, if I understood the nature of our meeting today, I most likely would have chosen not to go. The only thing participating resulted in was making me see how different I am from everyone else. 

Monday, July 16, 2018

Monday, July 16, 2018

Tonight's picture was taken in July of 2007, the summer before Mattie was diagnosed with cancer. Mattie loved his little (or NOT so little) kiddie pool that sat on our deck. In all honesty this pool took up over 1/3 of our deck. But Peter and I did not care as the pool brought Mattie lots of enjoyment, fun, and kept him busy. Now Mattie did not just sit in the pool or splash around. On the contrary, he would bring out different toys each day and throw them into the pool. From there he would create all sorts of play scenarios from the toys in the pool. It was a sight to watch and of course one of us was always incorporated into the play. 

Quote of the day: Love is something eternal; the aspect may change, but not the essence. ~ Vincent van Gogh

It seemed like walking Sunny was close to impossible today. It was like walking in an oven. I honestly don’t know how we did it! While walking down by the waterfront, I passed this visual nightmare. Those of you who are faithful readers know how much I detest graffiti. I am constantly reporting it to the District of Columbia. But today's sighting was down right offensive as in big letters it spelled, "bitch," and the shape of the image looked like a female body part. In either case, as soon as our walk was over, I contacted the district government and requested that it be removed and I supplied them with a photo. I honestly do not know how other residents don't report this kind of junk. I suppose either they don't find it as offensive as me or they think someone else will do it! All I know is seeing this makes me angry and hostile. I walk to get fresh air and clear my mind, and when I see this kind of stuff, it negates the whole purpose of walking. 

My friend's cousin, who has special needs, is visiting her from Boston. It is a summer tradition, where JP comes to Virginia for two weeks. Since I was away in LA, I am catching the tail end of his visit. So this is the second day I visited JP and tonight, Peter and I attended his Virginia Fan Club party. 

Sunny was at the party too and was a big hit. I have yet to find someone who doesn't like Sunny. He is just a friendly and calming influence for all ages. 

Sunday, July 15, 2018

Sunday, July 15, 2018

Tonight's picture was taken on July 15, 2007. It was our anniversary and I know this for sure, because if you look closely on the table you will see two wine goblets (one is cobalt blue and the other a deep burgundy). These goblets belonged to my paternal grandparents. They shared the same wedding anniversary with us, and when they died my uncle gave me these goblets to carry on a tradition of remembering both wedding anniversaries. 


Quote of the day: Marriage is a partnership in which each inspire the other, and brings fruition to both of you. ~ Millicent Carey McIntosh


Facebook greeted me this morning with a short reflection video in celebration of our wedding anniversary. Typically I think FB is clueless, but in this case I found it fascinating that for the most part the video was all about Mattie... the love we created. 

Click on the link to see the Facebook Video: 
https://www.facebook.com/668118467/videos/10156405604938468/?id=668118467

It is a tradition for us to celebrate our anniversary at Chez Francois in Great Falls, VA. Chez Francois has the best outdoor terrace for dining in our area and you can't beat the food and the old world service. It provides memorable charm that so many restaurants are missing.

It was about 91 degrees today and only the brave were eating outside. Us and another couple. But it was a cloudy day, so we had no sun beating down on us. It was perfect, surrounded by trees, gardens, birds, butterflies, and fountains. 

A selfie of us together. Another thing I love about this restaurant, is they don't rush you. It is a four course meal, paced over time. 

First course: 
Gazpacho - Vicki
Oysters - Peter

Second course:
Salads

Third course:
Trout - Vicki
Duck - Peter

Fourth course:
Grand Marnier Souffle - Vicki
Baked Alaska - Peter

 A glorious setting

A line up of the desserts.... Baked Alaska, a complimentary dessert for our anniversary (that had homemade meringue, which was incredible), and a grand marnier souffle. 

Reflections from July 15, 1995. A candid of the two of us! I love candids much more than posed photos. 

This photo was taken outside under a tree. It was over 100 degrees that day, sunny, and humid. I am not sure who was hotter, me in the dress or Peter in a tuxedo. 

My mom and I before the wedding.

Me with my lifetime friend, Karen. Karen was our maid of honor. 

Peter and me with my parents.

Peter and me with his parents and brother. 

Me with our bridesmaids. 

From left to right:
Jen, Karen, me, Colleen, and Christina. 

Our wedding party. 

Our groomsmen with Peter. Left to right:

Rich, Dave, Peter, Chris, and David