Thursday, May 21, 2018

Thursday, May 21, 2018

Tonight's picture was taken in March of 2009. I will NEVER forget that day. It was a celebration of the children's art gallery opening in the hospital. Naturally Mattie had several pieces featured as he loved creating! In this photo he was surrounded by his nurse, Kathleen, his good buddy in cancer, Brandon, Meg (child life intern), Jenny (Mattie's art therapist), and Linda (Mattie's child life specialist). I visited the hospital today to push our snack cart and Walk through this exact hallway. Mattie's story about his Lego city hospital is still on display!

Quote of the day: It's a great satisfaction knowing that for a brief point in time you made a difference. ~ Irene Natividad

So on my journey through the Children's Gallery at the hospital, I saw this photo! This is a photo of Mattie's favorite nurse, Tricia. Tricia was awarded the nurse of the year award. I text messaged her and told her I was visiting her (as she wasn't working today)! 

I am not at all surprised that Tricia received this commendation. She is a stellar nurse, sharp as a tack, humorous, compassionate, and an outstanding advocate for her patients and families. So happy to see her face as I walk down the Children's Gallery. It is as if she is figuratively watching over Mattie, after all you have to pass this photo of Tricia in order to see Mattie's art. 




I have been going to the hospital monthly now for maybe two years pushing our Foundation's free snack and item cart. Naturally I meet many children and families at each visit. I purposefully make these visits because I feel it is imperative for me to see the cart operationalized. I want to know what is working and what isn't working for myself. 

Tonight's quote truly resonates with me. Maybe because I experienced exactly what it is talking about today. I left my hospital visit convinced that our cart is making a difference in the lives of children and family. This wasn't just by observation, which is my usual monthly feedback (in addition to hospital quarterly reports!). Instead, I had a family who has been living at the hospital on and off for the last decade who wanted to talk with me. Imagine ten or more years of hospital living? Apparently their whole family loves the cart and it keeps them sane. They say the highlight of their week, is the cart coming around. The patient in question is a teenager, and though he was sedated today for a procedure, got himself out of bed because he wanted to meet ME and discuss the cart with me. He has ideas about things to add to the cart offerings. All valid items by the way. 

But given his medical condition right now, he is unable to eat any solid foods. Meaning nothing on the cart will work for him. He mentioned that he really wanted a slush/ice cone machine. That way he could have a snack (made mostly of fluid, but in a different consistency). I was so taken by him, by his medical story (as I can't imagine living life in a hospital for 19 years), his devoted family, and his desire to help others. Most people wouldn't be able to think beyond themselves and their own issues if they were in his shoes. So I told him outright, that I will be getting him the slush machine as my (not the Foundation) gift to him. If this is going to make one child happy and life more bearable in the hospital, then it brings me great satisfaction. 

Needless to say I have been thinking about my interaction and conversation with this young man all day. When you reflect on that fact that you have healthy teenagers in the community focused on social media, pot, and complaining about all sorts of trivial matters, it gives me pause. As they don't realize how lucky they are, since being healthy is a gift that they shouldn't waste. I have no doubt this teen in the hospital would do anything for a 'normal' every day life. A life involving school, chores, and work. What we consider boring and tiring activities, from the perspective of the patient/family, doing these things would feel like winning the lottery. Illness gives one great perspective and clarifies  priorities like nothing else could possibly do!

Though we are supplying the cart and hopefully helping others, it would never have dawned on me that I would leave today feeling like I received a gift. It was very meaningful to be told our work makes a difference and that patients and families look forward to cart visits to help them though the very long, stressful, and sometimes painful hours confined to a hospital room. 

Wednesday, June 20, 2018

Wednesday, June 20, 2018

Tonight's picture was taken in June of 2009. Mattie was in the hospital recovering from his third major surgery, a sternotomy. Mattie's cancer metastasized to his lungs and frankly we are still in amazement that Mattie survived that surgery and the recovery. Given all that he had overcome by that point in time. Yet despite pain and non-stop hospitalizations, Mattie had some happy moments. What helped greatly was our support community who constantly showered Mattie with toys, books, videos, and other gifts. All these items truly were great diversions for all of us. Notice the Sponge Bob balloons in the room! Mattie came to love Sponge Bob in the hospital, and of course part of me thinks he liked the character, because I disliked it. Regardless, whatever cheered Mattie up, we went with and so did all of his friends. 


Quote of the day: We are shaped and fashioned by what we love. ~  Johann Wolfgang von Goethe


I would say that Goethe's quote is very accurate. In fact it rules my life. What I am referring to is the love I have for Mattie. It is that love that guides my everyday interactions with people and most definitely influences my passion about the Foundation. I am not sure I would do non-profit work or run our own Foundation, if it wasn't such a personal cause. It is the personal side of this work that keeps me up, working long hours, and thinking about Mattie Miracle every day of the week. All other work I have done in the past, was never all consuming like this. 

For the past two years, Peter and I have created a Walk video after our event. It is a lovely pictorial way to highlight, remember, and promote our future Walks! Basically the video is photos from the event set and timed to music. I am simplifying the process, because in reality it is VERY labor intensive and takes hours and in some cases days to get it right. 

After we got back from South Carolina, we realized the software we used for the past two years wasn't going to work, since we upgraded our version of Microsoft. So much for progress. This progress, set us back significantly. We had to do some research and figure out what the next user friendly platform to use to design our video. Peter is up to his ears with his full time job, so with a little coaching from him, I was determined today to figure out how to design the 2018 Walk video. I have been working on it for hours and still have more to do. But I am making progress and actually feel good about my accomplishment, as I am NOT the technical one in my duo. 

In case you haven't seen our last two walk videos, I included them below!!

Walk 2016: https://www.youtube.com/watch?v=j88w-0NZZ2E

Walk 2017:  https://www.youtube.com/watch?v=gw3fZkUfUmk

Tuesday, June 19, 2018

Tuesday, June 19, 2018 -- Mattie died 457 weeks ago today.

Tonight's picture was taken in June of 2009. Mattie was sitting between his two closest friends in cancer. Brandon on the left and Jocelyn on the right. It is hard to believe that both Mattie and Jocelyn are both gone, thanks to osteosarcoma. By the time this photo was taken, Brandon's lymphoma went into remission, but he still came to the hospital to visit and play with Mattie frequently. What you need to understand however is that Brandon and his family lived about an hour away from the hospital. So visiting was a commitment. I will never forget the friendships of these two beautiful people had with Mattie. 


Quote of the day: The fear of death follows from the fear of life. A man who lives fully is prepared to die at any time. ~ Mark Twain


Though I understand the spirit behind Mark Twain's quote, I wonder how he felt about childhood cancer? After all at least four to five children a day die and therefore they clearly do not qualify as having lived a FULL life! So if one hasn't led a full life, what is the conclusion..... you are not prepared to die? I would say that is correct! Certainly any child whose life is taken in any manner, leaves a family broken. Cracked! You pick the word, and NO ONE is prepared for such a death. 

I had the opportunity to interact with someone today whose dad died a month ago, and yesterday I spoke with a man whose mom died about 3 years ago. They are at different points in the grief journey, but guess what???? Each present issues and concerns. 

Hearing about grief and loss through someone else's lens is very interesting to me. Mainly because what they are reporting.... sadness, not interested in interacting with the world, disliking crowds, fatigue, and an inability to sleep, are of no surprise to me. Though it would be easy for me to pipe in and discuss my own loss, I know from personal experience this is NOT helpful! When you are dealing with your own emotions, it serves no purpose for others to reflect on how they understand, and are living their own journey. I don't think any of us are purposely being mean by not wanting to hear about other people's losses or their grief stories. Rather so much about grief and loss is about telling, retelling, and retelling again our stories. We need to be heard, we don't necessary need our loss compounded by hearing about the grief journey of others. 

Loss and its ramifications are like a broken record in our heads, and the only way forward is to share this record with others. I have found that only through this retelling can some sort of healing begin to take place. Now don't confuse the word healing with moving on or getting over the loss. These are two separate things and those who know me well, know there is NO getting over a traumatic loss. The mission with grief, if one chooses to take it..... is how to learn how to live with this loss?

Getting back to the telling and retelling! A lot of people in our lives do not want to hear our stories over and over. It makes them uncomfortable and for the most part people in the community think that retelling isn't healthy. But rather a benchmark of being stuck. So NOT true! Two things I learned from Mattie's death: 1) grief is about retelling one's story (and there is no time line on this!!), and 2) when someone is sharing their grief story, they do not want to hear your own. 

Monday, June 18, 2018

Monday, June 18, 2018

Tonight's picture was taken in June of 2008. It was a typical occurrence for us to walk Roosevelt Island every weekend. Mattie was happiest when he was outside. Notice the red Lightning McQueen toy car he was holding. Classic Mattie..... as he always went out on walks with something in his hands. 


Quote of the day: If you want to conquer the anxiety of life, live in the moment, live in the breath. ~ Amit Ray

Today I went for an MRI of my hip. I have been dealing with constant pain for over two months now. Before I went to South Carolina, I saw an orthopedist who did an x-ray of my hip. The scan showed a large calcification in my hip and apparently this can signify an injury. Since I have no recollection of such an incident to cause an injury I am perplexed. But without anti-inflammatory meds I wouldn't have survived the Walk or going away. So to find out exactly what we are dealing with I had to take an MRI today. I get the results on Friday when I see the doctor. I am hoping for tendinitis and not something that requires surgery. 

While I was in this tube today for 20 minutes, I couldn't help but pause and think of Mattie. He coped with countless MRIs and the whole notion of seeing the scanner sent him right into a panic. Which was why Mattie had to be sedated for every scan, making scanning days a production because Mattie did not wake up happy from sedation. Sedation typically left Mattie angry and aggressive. While hearing the very loud noises within the MRI, I tried to imagine what it is like for any patient worried about a cancer diagnosis. The fear of such a diagnosis is intense and then compound to it with very loud noises for a prolonged period of time, and you have the perfect recipe for anxiety. Ironically while thinking about Mattie and our experiences with MRIs, I could feel myself getting anxious toward the end of the scan. Yet you have to remain perfectly still and in the same position, otherwise it screws up the test. 

What this reminds me once again is that Mattie may not be alive and we may not be actively coping with cancer, however, cancer and its ramifications continue to be a part of our lives. Mattie's cancer has changed me as a person.... from what interests me to how I function, think, and feel. Of course no one talks about these long term psychosocial consequences on family members, but they are real and not just a Vicki/Peter thing. 

Sunday, June 17, 2018

Sunday, June 17, 2018

Tonight's picture was taken on Father's Day in 2007. That day we decided to go on a Duck Tour of Washington, DC. Something none of us had ever done before. We figured it would be an adventure for Mattie since this was an amphibious vehicle, and that Mattie would love seeing the bus drive into the Potomac River and float. It was a good activity in theory, but everything is always so crowded in DC, especially on a holiday. One of the things Mattie did not do well with was crowds. So the day turned out to be less than pleasant. I figured we would have more Father's Days in the future so one not so good holiday, would be okay. However, the following year Mattie was diagnosed with cancer. 


Quote of the day: The heart of a father is the masterpiece of nature. ~ Antoine-François Prévost

Today is the ninth Father's Day acknowledged without Mattie's presence. I would like to say with each successive year, these holidays get easier. I have a feeling the majority of the world thinks this happens, and if I were in their shoes, I most likely would think the same thing. After all, I would hope that pain from such a loss isn't a lifetime sentence. But sadly the reality is much more grim.

The highlight of our day was picking up Indie and Sunny from boarding. This is Sunny in the car right outside of boarding! He was yelping with joy!

After we picked Sunny up, we took him on a walk. He was so existed to be out, sniffing, and chasing squirrels! He wasn't walking, it was more like he was running. It was hard to keep up with him. Ironically, when Sunny is boarded, I get daily text messages that he doesn't want to eat. Which I find very funny, because when he is with me, he is non-stop eating. 

When Peter and I moved to Washington, DC YEARS ago we went to the Sears Garden center and bought lilies. Believe it or not, these are the same bulbs that come out every June around Father's Day for the last twenty years. It is hard to believe that the bulbs outlasted Mattie. 

Our Father's Day lilies. 

Meanwhile, Indie got a lot of outdoor time on our deck today. She was in heaven. 

Do you see Indie. She either sits on a chair, on top of the table, or in this case under the table. She loves spying on birds flying over head and today's adventure was chasing a dragonfly!

Saturday, June 16, 2018

Saturday, June 16, 2018

Tonight's picture was taken on July 4, 2003. Mattie was one year old and we took him to the Outer Banks, NC that summer to experience the ocean and sand. Mattie did not like either that first year! What fascinated me about Mattie, was he had a sixth sense. Or he was just wise beyond his years, as he had an innate instinct to be cautious around things that could potentially cause him harm. He wasn't the kind of kid I had to worry about jumping into water for example. Not that I gave him the opportunity as I watched him like a hawk. This photo says it all though.... Mattie was taking in the sights and sounds of the ocean and his little hand made a fist. Mattie's fingers were like little radar scopes and the fingers closed into a fist meant that he did not want to absorb any more of what was going on around him. He was scared. 


Quote of the day: Everyone has inside of him a piece of good news.
The good news is that you don't know how great you can be! How much you can love! What you can accomplish! And what your potential is! ~ Anne Frank

We left Kiawah Island today and drove back to Washington, DC. It took us 9 hours. It was a long day in the car, but really the drive is quite beautiful and peaceful up until you hit Richmond, VA. Otherwise, driving in the South is picturesque and very pleasant. Unlike driving on the other part of I-95 going North. 

However, 9 hours makes for a long day. I wish every state could be as whimsical at South Carolina. I absolutely love how South Carolina breaks up the trip with its tongue and cheek "South of the Border" signs and then theme park at the South Carolina border. I literally NEVER knew such an attraction existed because I have never driven this far South on I-95. But for 40 miles before you hit the South Carolina border you see all sorts of billboards advertising the "South of the Border" attraction. Not South of the border to Mexico, but South of North Carolina's border, putting you in South Carolina. Honestly the signs really catch your attention and they kept me engaged as I tried to photograph them from the car. The photo above is what the "South of the Border" attraction looks like. 

This is the sombrero observation tower at the theme park. 

South of the Border was developed by Alan Schafer in 1950. He had founded South of the Border Depot, a beer stand, at the location in 1949 adjacent to Robeson County which was, at one time, one of many dry North Carolina counties. Business was steadily expanded with Mexican trinkets and numerous kitsch items imported from Mexico. The site itself also began to expand to include a cocktail lounge, gas station and souvenir shop and, in 1954, a motel. In 1962, South of the Border expanded into fireworks sales, potentially capitalizing on the fact fireworks were illegal in North Carolina. In 1964 it was announced that the route for I-95 would pass right by South of the Border, and the facility would be next to two exits and within view of the highway. 

By the mid-1960's, South of the Border had expanded to include a barber shop, drug store, a variety store, a post office an outdoor go-kart track complete with other outdoor recreational facilities and the 104 feet tall image of the mascot, Pedro.

Keep in mind I am snapping photos from a moving car on a highway. I missed many of the signs, but the ones I did capture are priceless.

This is hear no evil, see no evil, and speak no evil!

This one says.... You never sausage a place, You're always a weiner at Pedro's (the mascot for South of the Border).

Flamingos!

ICYMI (I see why am I..... South of the Border)!

Because Nouth Carolina is ONLY 19 miles away from this sign. 

Smile! You're almost there. 

Shalom!

 Smack hit!

 Life is good

This is what we drove passed on I-95 in South Carolina. Greenery everywhere and hundreds of yellow blooming lilies. 

The highway is divided by crape myrtle trees and yellow lilies. I assure you I-95 North isn't as pretty!

Crape Myrtles starting to bloom. 

Meanwhile, we decided to stop for a rest break in North Carolina. Check out this rest/truck stop. I felt as if I was in the movie, Cars. Mattie would have LOVED this stop. Check out what was inside.....

Literally there were trucks on display inside. In addition to restaurants, restrooms (the cleanest I have seen at a public rest stop), and shops to purchase just about everything. 

An amazing display. Mattie would have been running around looking at every truck and item possible. 

Steering wheels to purchase and on display!

Meanwhile, this is the sight we left this morning. We have a very different environment around us now. 

Friday, June 15, 2018

Friday, June 15, 2018

Tonight's picture was taken in July of 2003. Mattie was a year old and this was his first trip to the Outer Banks, NC. As it was Mattie's first trip, he was very cautious and I would say intimidated by the ocean and sand. So instead of having beach time, we went around sight seeing. We took Mattie to all the lighthouses. The one we posed in front of was Bodie Light. Last summer was the first time Peter and I actually climbed Bodie Light. In all the years we went down to the Outer Banks, we never climbed up this one. That of course changed in  2017. 




Quote of the day: Everybody needs beauty as well as bread, places to play in and pray in where nature may heal and cheer and give strength to the body and soul. ~ John Muir

Given that we are driving back to DC tomorrow, which will be 8-9 hours (if not longer,) there was NO way, I wanted to spend any time in the car today. So we ventured in the other direction today by bicycle. Bicycle riding on sand is an experience. If you are peddling with the wind, it is NO problem. If you are peddling with the wind blowing at you, it feels like you are biking up a steep hill. You can't even see where we rode from in this photo. That is how far away it was. We bicycled all the way to the Kiawah River, and it is at that point, that the river separates the beach, making it impossible to cross. So in the last two days, we have rode about 20 miles and have seen the entire stretch of beach on Kiawah Island. 

It was such a feat to get to the Kiawah River, that when I got there, I had my hands up in the air for victory. Vicki vs the wind, and I won! I kept asking Peter as we were riding, how close we were to the river. As I knew the river meant we would turn around and be able to ride with the wind.... which makes peddling a breeze!

While peddling to the river, I had Johnny Cash's song... "I walk the line" in my head. Do not ask me why!!! 

Peter was standing right in front of the Kiawah River. I think it is a sight to see a River separate the beach! On one side of the River is Kiawah Island and on the other Seabrook Island. 

So between Wednesday and today's bike adventures, these are the incredible shells we collected. I am telling you.... intact whelk, giant Atlantic cockle shells and sand dollars. But you won't find such wonderful shells just anywhere on the beach, you really have to ride down to either end of the beach.  

We found this fish swimming right by the shore of the River. 

After bicycle riding, we re-grouped and then went out for an early dinner on the Island. This is what a typical street looks like on the Island. 

The drive up to the entrance of Ocean Course clubhouse. There are at least four golf courses on this Island and each course has a lovely and well appointed club house with restaurants. I am not sure who planned this community, but they were brilliant. 

Sitting at the Ryder Cup Restaurant at Ocean Course Clubhouse. From our table we could see the Atlantic.

Our view

The flags blowing in the wind....... The Ocean Course flag, the American flag and the state flag of South Carolina. 

I end today's posting with my deer friends. I have nicknamed them Bucky. There is also a female in the bunch that I have seen and I have named her Daisy. Daisy and Bucky visit outside our balcony every night and when they are not there, then we have found them in the parking lot chomping on bushes.