Saturday, June 22, 2019

Saturday, June 22, 2019

Tonight's picture was taken in June of 2002. Mattie was two months old. Mattie's pediatrician claimed that babies don't really smile at 2 months of age, instead she told me the smirk was just the passing of 'gas.' Perhaps, but in my mind Mattie was really smiling and at a young age he had a sense of humor. 

So much so that around three months of age, I called his doctor in a panic. As it seemed Mattie was wheezing and trying to catch his breath. Given that we weren't doing anything other than being at home, I had nothing to explain this wheezing. What did it turn out to be? Try Mattie laughing. But until we figured this out, I was besides myself. I think the more animated I got, the funnier Mattie though this was..... which increased the wheezing sounds! Even when Peter got home from work, I pulled him into this problem. Years later, we shared this story with Mattie, and we all got a chuckle out of the humor of Mattie Brown. 


Quote of the day: If you seek creative ideas go walking. Angels whisper to a man when he goes for a walk. ~ Raymond Myers

We divided and conquered today. I walked Sunny and Peter ran chores. I took Sunny to his favorite spot in Alexandria to walk. There is a private high school with beautiful grounds and even a cross country wooded trail. Frankly I would never have found the trail, as it isn't clearly marked. It was Sunny who found it a year ago. What I love about the campus is I can freely walk it and the trail and feel safe. While on the cross country trail, we saw two deer. Here's the first one! 

This is the second deer we saw. It is wonderful to have access to this campus and to me it is very peaceful, compared to our city walks!

This is what the cross country trail looks like. It literally is in the woods. But these woods belong to the school. They are completely gated and you can only access them from the campus. I am so glad Sunny found them!

Later today we are headed to an anniversary party for our friends. I do not discuss this much on the blog, but the reality is we really do not go to parties anymore. I am not sure what sets me off more..... crowds of people or happy occasions. I will give you an example. A few years ago, we were invited to a wedding out of state. We went because we are fond of one of Mattie's teachers. I made it through the church ceremony, but when we got to the reception, after about 30 minutes I had to leave. We never made it to the dinner or festivities. I know others don't get me and may view my actions as rude. But certain circumstances absolutely trigger panic attacks and anxiety in me. Therefore, I am careful at what I agree to go to. 

How is this connected to Mattie's cancer diagnosis? Well I don't know exactly, other than social situations make me edgy because I know our situation is quite different from most people. In social events people talk about work and family. For me, my work is my family as the Foundation represents Mattie. What I have found is my reality is usually a conversation stopper and I will leave it at that. 

Friday, June 21, 2019

Friday, June 21, 2019

Tonight's picture was taken in June of 2003. Mattie was one year old. In the middle of our living room, we had a play pen. At that age Mattie was all over the place, and when I needed to cook or do something for a short period of time, Mattie would have play time in the pen. With that said, Mattie truly did not like self entertainment. He wanted our attention and most definitely wanted a play partner. So literally most of the time Peter or I were in the pen with Mattie. 


Quote of the day: New evidence is continually emerging, showing that people and their dogs have incredibly close bonds that resemble the ones that parents share with their children. ~ Alicia Buttner


I picked Sunny up from boarding on Monday. By Monday afternoon, we noticed that he had a bad scratch over his left eye. I am quite sure he got it from our walk. Traditionally when I pick him up from boarding, I then take him to his favorite place to walk in Alexandria, VA. Sunny likes to sniff and check out bushes, and most likely cut his skin on a thorn. I have been cleaning it out, but today the whole area looked swollen and his eye a different size. So to the vet he went. He wasn't happy! The only thing accomplished at the vet's office, was a significant bill. Otherwise, she says it is a scrape and we should encourage him not to scratch it. Funny! She even gave us the classic Elizabethan collar. Equally hysterical. As Sunny had it off within seconds! 

Needless to say, I think it is rather ironic that Peter found the article entitled, Stressed out? Your dog may feel it too and sent it to me. Swedish researchers focused on 58 people who own border collies (like Sunny) or Shetland sheepdogs. They examined hair from the dog owners and their dogs, looking at the concentrations of a hormone called cortisol, a chemical released into the bloodstream and absorbed by hair follicles in response to stress. The research team found that the patterns of cortisol levels in the hair of dog owners closely matched that found in their dogs in both winter and summer months, indicating their stress levels were in sync.

I joke all the time that Walk season is stressful for Sunny. He isn't only stressed because he receives less attention and sporadic Walks, but that he emotionally feels the stress of me working around the clock. Sunny is a very sensitive fellow and I can tell he is much happier now that I am not glued to the computer. 

But as tonight's quote points out, the bond between a human and a dog is quite special. I know the author compares it to the connection between parents and children. I am not sure I would go that far, but then again, maybe! I have gotten to know other dog owners in our neighborhood, as we are the only ones out there regardless of the weather. We are like the post office, we do our job in rain, sleet, snow, and intense heat! Several of the dog owners I have met are older than me and have never married. Yet they have dogs. The dogs are their family and one dog in particular gets treated with a bowl of ice cream every night. Something I am sure Sunny would sign up for if I offered it! My point is I see exactly what this research is highlighting in my everyday life. If Sunny were allowed everywhere I go (grocery store, restaurants, etc), I most definitely would take him. 

Stressed out? Your dog may feel it too, study suggests:
https://apnews.com/cd654537064a40adb97fe7bd1c63ba3e

Thursday, June 20, 2019

Thursday, June 20, 2019

Tonight's picture was taken in June of 2003. Mattie was a year old and using his favorite mode of transportation... Peter's back. We took Mattie to Great Falls, MD that day and Mattie was fascinated with all the sights and sounds. He really loved adventure, outdoor adventure! Prior to having Mattie, I spent little time outside. Mattie changed all of that. 


Quote of the day: We are very, very small, but we are profoundly capable of very, very big things. ~ Stephen Hawking


Sunny and I left our home early today so he could get groomed. I groom Sunny once a month. With a big dog, that has a lot of fur, he seems to need it. The groomer we used for three years now is pregnant and therefore until she has her baby, we have to see her friend. Her friend is not located in the same location. All I know is I feel like I spent the entire day in the car running from one place to another. Mind you it was like 90 degrees with high humidity. On top of all the car riding, Sunny needed to be walked after he got groomed. Needless to say, I am wiped out. 

When I picked Sunny up at the new groomer's today, the groomer said to me that Sunny can give you 'a look!' Certainly I know Sunny has a multitude of expressions, but that wasn't what she was talking about. She told me that several people who came in to pick up their dogs found Sunny scary! Even some of the little dogs were frightened of him. I frankly wasn't sure if we were talking about the SAME dog, as Sunny is my GENTLE GIANT. He wouldn't hurt a fly, unless truly provoked. So that is a red flag that I am keeping in the back of my mind. 

This grooming location is not new to Sunny. In fact, his long time groomer used to work there for a couple of months before she relocated to a vet's office. So Sunny is familiar with the space. Unfortunately our animals can't use words! Instead, I have to just collect information along the way and try to put the pieces together. At the end of the day, Sunny does look clean and well groomed!

Wednesday, June 19, 2019

Wednesday, June 19, 2019

Tonight's picture was taken in June of 2004. Mattie was two years old. You may think looking at this photo that Mattie was resting in Peter's lap! Actually..... NO! Mattie had two switches, on and off. There was nothing in between for him. Mattie was running around our home and literally jumped or crashed into Peter's lap. It was just a momentary pause before moving again. But it was long enough for me to capture Mattie NOT moving on camera. 







Quote of the day: When one tugs at a single thing in nature, he finds it attached to the rest of the world. ~ John Muir


I noticed today that my email in-box was filling up with messages from fellow childhood cancer advocates. Many of whom were saying they checked out our website and wanted to learn more about our Psychosocial Standards of Care. Specifically requesting phone calls with me. 

Given the volume and focus on the Standards in these messages, I was wondering what was up? But then a fellow advocate, who runs another childhood cancer non-profit, wrote to me. She filled me in and mentioned that a bunch of childhood cancer advocates are at a conference. At the conference one of the developers of our Psychosocial Standards of Care was presenting. This researcher highlighted the Standards and Mattie Miracle. 

We did not know about this conference presentation today. But this is the beauty of having 80+ researchers all around the Country, Canada and the Netherlands who have been working on this project with us. This is a committed group of individuals, all who do work on the Standards for basically NO compensation! Can you imagine??? It is hard to get anyone today to do something for free, but this amazing group of professionals are equally committed to Mattie Miracle's vision. A vision that one day every child and family will have access to optimal psychosocial area along the entire cancer journey. 

John Muir's quote resonated with me tonight. Because one tug in nature DOES have a cascading effect. The Psychosocial Standards of Care are case in point. In 2010 (shortly after Mattie died), I began reading a lot of psychosocial journal articles. Specifically those addressing trauma. So on a lark, I decided to email the main author who I saw listed on many of the articles. The author was Anne Kazak. As I learned later, Anne is considered the guru on trauma and the impact of childhood cancer. I am not sure what I was hoping to accomplish from my email to Anne, other than I wanted her to know her articles were making a difference in my life. They were helping me put words to my own experiences. I

Turns out Anne actually wrote me back. Anne and I joke all the time, that the Psychosocial Standards of Care project started OVER ONE SINGLE email. Would the Standards have been created if I never wrote the email in the first place? Or if Anne never responded to the email? I have no idea. My hunch is maybe, but the Standards are truly our vision. A vision that the psychosocial community has embraced. I am so glad I gave that ONE important TUG, and from this tug I have been connected to INCREDIBLE psychosocial professionals all over the USA and Canada. 

Tuesday, June 18, 2019

Tuesday, June 18, 2019 -- Mattie died 508 weeks ago today.

Tonight's picture was taken in June of 2004. Mattie was two years old and I have to say this is one of my favorite candid photos I snapped! Mattie loved playing with his Mr. Potato Head toy, and the toy came with accessories. One being these plastic glasses. Instead of putting them on Mr. Potato Head, Mattie donned them on himself! Not only wearing them on, but walking around our home with them upside down!






Quote of the day: For a chronic migraine, there are no triggers, life is my trigger. For chronic migraineurs there are no cures, there are only patches that will get you through to the next bout. Have we tried, acupuncture, herbal remedies, diets, standing upside down on our heads? Yes. The answer is if we have gotten diagnosed with chronic migraines then we have tried everything, and if by chance we have been able to get up and put our mask on that day please let us wear it, under our sunglasses and large hats. It took a lot to get there, and ain’t nobody got spoons for that. ~ Emily A.


Today I went for my follow up appointment with my neurologist. There are some doctors who I see continuously throughout the calendar year. This neurologist came into my life about two months after Mattie died. Mind you I had seen several others before him. But he came highly recommended from Mattie's art therapist.

Like Emily in tonight's quote, I too have been diagnosed with chronic migraines, as well as cluster headaches. Cluster headaches are horrific, they seem to last a long time (I am talking weeks), and are debilitating. In fact, some people become suicidal because of them. In any case, my neurologist said to me today that he is confident in time my headaches will go away. I absolutely LAUGHED. I laughed because I got my first migraine on the day I went into labor, back in 2002, and I haven't had a headache free day since. After I laughed, my doctor retracted his sentence and said...... well in 100 years, things will be different. REALLY? My response was in 100 years..... I will be dead. So certainly I won't be dealing with headaches. I am not sure who was more humorous today, him or me? It was a toss up! FYI, my nickname for this doctor is 'Mr. Personality.' You connect the dots. 

Yesterday the iconic fashion designer, Gloria Vanderbilt, died. While listening to the radio, I got to hear a clip of her being interviewed after the suicide of her child, Carter Cooper (age 23). Frankly when I heard it, I was stunned, because she said to be human, we must experience pain. It is only through pain that we can know joy. Literally, I was yelling at the radio.... 'YOU GOT TO BE KIDDING.' So I dug a little further today and found an article in People Magazine. I know not too scientific, but it gave me a glimpse into how a child's death impacts a parent and the entire family. I was actually much more satisfied reading the article than the one minute blurb I heard on the radio. The blurb seems to capture Vanderbilt's feelings out of context. 

Gloria Vanderbilt explained in the article (see below) that even 28 years after her son's death, she still hasn't reached closure. She goes onto say that Christmas' have never been the same either. She lost a son to suicide and I lost a son to cancer, and yet we have very similar views of the world. Because unfortunately such a tragic and unexpected loss, leaves a parent and family traumatized. The trauma is carried with us always. The only difference is that over time we develop a way to function with it. Yet the outside world doesn't always see our scars, but I assure you those of us who have experienced such a traumatic loss.... we see these scars in ourselves and others, as if they were very fresh and very visible. 

How Gloria Vanderbilt Coped After the Suicide of Her Son, Carter Cooper:
https://people.com/style/gloria-vanderbilt-on-son-carter-cooper-death/

Monday, June 17, 2019

Monday, June 17, 2019

Tonight's picture was taken on Father's Day of 2006. We took Peter to Tower Oaks in Maryland. This was one of a few restaurants Mattie tolerated. As Mattie wasn't much for sitting still or eating! A major way we differed! To take Mattie to a restaurant literally required bringing a bag of tricks. When that failed, we would take Mattie outside, because this restaurant had a little pond filled with fish and turtles. 


Quote of the day: The worst part of holding the memories is not the pain. It's the loneliness of it. Memories need to be shared. ~ Lois Lowry

Early this morning, Peter went to go pick up Indie from boarding. As you can see Indie settled right on in and acclimated to being home quickly. I truly believe Indie is more like a dog than a cat. She is very easy going, wants to be by your side, and is affectionate. Truly not demanding like a typical cat. Which works out well, because Sunny makes up for it times two. 

I picked Sunny up this afternoon! He was absolutely thrilled and bolted for the door of the facility when he saw me. I would say that Sunny panted for several hours until I got home and he acclimated. He came back anxious from being boarded! 

The facility is used to Sunny and how he puts them through their paces. Meaning just when they figured out what combination of things to feed him, he changes his mind and goes on a hunger strike, until they switch things up. Sunny apparently did a lot of mounting (climbing) on other dogs during this visit. Which got Sunny a couple of special trips into time out. We all concur he does this because of anxiety.  

As I was driving to the place I always take Sunny for his walk in Alexandria, VA, you can see how excited he was to be free and in the car. Sunny loves looking outside and at anything that moves!

It felt like a thousand degrees today with the humidity. Despite that it did not stop Sunny from wanting a walk. I would say for the first half of the walk, Sunny was so thrilled that he was dragging me along. I couldn't keep up with his pace. However, given the heat, we stopped for several water breaks and rest. Sunny is a riot, as he will literally find a patch of grass and then just plop himself down. Indicating he needs WATER stat!

Sunday, June 16, 2019

Sunday, June 16, 2019

Tonight's picture was taken in June of 2009. Mattie was in the hospital and as you can see he wasn't feeling well. He fell asleep sitting in a chair. Do you notice, Sunshine? The stuffed animal albino boa constrictor? This snake was given to Mattie by his close buddy, Jocelyn. Jocelyn also had osteosarcoma and was a wonderful role model for  Mattie. It is hard to believe that both Mattie and Jocelyn are now gone, but Sunshine remains. Sunshine lives in Mattie's room, and when I see the snake, I think of Mattie and his special friendship with Jocelyn. 



Quote of the day: To handle yourself, use your head; to handle others, use your heart. ~ Eleanor Roosevelt

After a horrible night of sleep, I went to complain to the Marriott today. Neither Peter or I could get comfortable on their mattress. Not to mention a whole other bunch of issues. Just piping up, I got 5,000 reward points added to Peter's account. As Peter says, I do good work. 

It was an endless car ride today. Five hours seemed like an eternity, especially with traffic. Things were great up until Richmond. Then after Richmond, as we got closer to DC, it became a parking lot.

What I noticed was South Carolina and North Carolina spend a lot of time making their roads and planting along the highways beautiful. Once we hit Virginia, it all went down hill. Grass wasn't mowed and forget about flowers. 

I did enjoy seeing the fields of corn!

Welcome to Virginia traffic! 

Get the gist. For an hour, we moved about 25MPH!

Off in the distance you can see the National Museum of the Marine Corps. Located near Quantico. The Museum opened in 2006 and the exterior is to evoke the image of the flag raisers of Iwo Jima. It is a stunning image that captures your attention.

Of course today is Father's Day. In honor of Peter, I am posting this photo taken on Father's Day in 2007. We did a Duck Boat tour of DC together. 

For the past couple of days, we have been surrounded by vacationers with children. In fact, yesterday morning we had a mom with her 1 year old sitting next to us at breakfast. The mom was singing all sorts of children's songs right in the middle of breakfast. Keep in mind she was doing this with all of us around her at a 5 star hotel. It was a little much. She also happened to be pregnant and getting a lot of attention. She was so loud, we couldn't help but be part of her conversation. She was complaining about how much energy a one-year-old requires. I then told her that the next couple of years will be equally challenging and that age 2, 3, and 4 also have their issues. She wasn't happy to hear this, but I spared her the reality check..... that not all children are lucky enough to grow to adulthood! For NO ONE ever thinks their child will be diagnosed with cancer. THANKFULLY!