Saturday, March 9, 2019

Saturday, March 9, 2019

Tonight's picture was taken in March of 2007. Mattie was almost five years old. March snows are never welcomed, but Mattie loved the snow. He went outside on our deck and was trying to catch snow flakes. I tried to capture this moment on camera. I have never been a cold weather person, but regardless of temperatures, Mattie wanted to be outside. So I learned to manage the weather. Mattie prepared me later in life to be an owner of a border collie, as Sunny loves the outdoors at any time of year. I have a feeling Mattie and Sunny would have gotten along splendidly. 




Quote of the day: You should start naming your kidney stones like the weather people do hurricanes. ~ unknown

I would have to say dealing with the chronic pain of a kidney stone isn't exactly wonderful. Which maybe why I resorted to kidney stone humor in tonight's quote. 

I was hoping to sleep a little later this morning, but apparently the DC Rock and Roll marathon had other plans for me. As they were setting up at 2-3am and then music and loud speakers were going outside our window by 7am. 

The highlight of the day was walking Sunny on Roosevelt Island. He just loves it and for us it is a great break in our usual walk routine. On our way home from the Island, I snapped photos of all the graffiti taking over Foggy Bottom. Needless to say, as soon as warmer weather hits, I am sending these photos back into the DC Department of Works. As to me this is an appalling sight, as it sits right in front of the State Department.

Here's another horrific sight.... graffiti in front of the Kennedy Center. These two areas I photographed get hit constantly. In fact, they can get cleaned up one week, and then a few months later they are covered again. But that doesn't stop me, I report it as quickly as it happens. 

Friday, March 8, 2019

Friday, March 8, 2019

Tonight's picture was taken in March of 2005. Mattie was almost three years old here! At this point, Mattie was IN LOVE with tub time. So much so, that it was practically impossible to get him out of the tub. He could stay there an hour, and become water logged. Every toy possible was free game to be tossed into the tub. Some days, the tub was like a car wash, as there was always a theme! All of this is quite ironic because I would say for the first year or so of Mattie's life, he did not like the feeling of water on him. Bathing him was next to impossible. With Mattie.... he was typically all in or all out. Not many shades of gray. 


Quote of the day: Believe in yourself. You are braver than you think, more talented than you know, and capable of more than you imagine. ~ Roy T. Bennett


Still haven't passed the kidney stone. Each day I hope to have movement so I can avoid surgery. Since I saw the doctor on Tuesday, someone from his office has called me each day thereafter. For different reasons, but I like the fact that someone is checking in. Now I also have an infection on top of the stone, so that was today's call. 

I am not sure what someone is supposed to do when they have a kidney stone, other than comply with fluid consumption and other medical advice. But one can't stop living, or shirk responsibilities. I had a five hour licensure board meeting today and I knew we were going to have multiple agenda items. 

I thought the meeting was going to be much harder than it was, but I had the opportunity to interact with a member of the public today and I saw amazing growth in her since we last spoke to each other. I am not going into details here about the issue, but what I came away with is that what I do matters. The meeting made an impression on me because what it shows me is that people can listen, change, and improve their lives. Needless to say, I left the meeting on a high note.

Later in the day, I received an invitation from Mattie's school to take part in a Social Entrepreneurship Summit. It is one-day summit for high school students throughout the Washington DC Metro Area who are interested in brainstorming, creating, or expanding a social impact business or nonprofit organization.  Specifically I was asked mentor students, as the school considers me an experienced social entrepreneur. 

Given the week I have been having with stone pain, today's meeting and then this invitation perked me up! As Bennett's quote points out tonight, it's important to believe in yourself, but I must admit it is nice to receive tangibles sometimes to confirm this. 

Thursday, March 7, 2019

Thursday, March 7, 2019

Tonight's picture was taken in March of 2006. The flower pot you see in front of us was created by Mattie's preschool class. Each child put their thumb print on the clay pot. Peter and I bought the flower pot at the school's auction. Mattie was very happy to see our purchase, as he was proud of this creation!



Quote of the day: I'm not a therapist. Play isn't just for diagnosis or therapy. It's these children's right and need. ~ B. J. Seabury

Kidney stone and all, I drove to Baltimore, MD today to meet our child life specialist and to push the Mattie Miracle Snack and Item Cart around the pediatric units. 

Literally it takes me 90 minutes to drive to Baltimore and another 90 minutes to get home. In theory it shouldn't take that long, but with traffic, it is a journey!

Our child life specialist, Adina, created this week's poster, highlighting Child Life month. The child life profession holds a special place in my heart, because of Mattie's amazing child life specialist. I always referred to Linda as our "Medical Mary Poppins." She could make just about anything happen at the hospital, was a fierce advocate for us, and she helped Mattie, me, and Peter immensely during Mattie's 14 month cancer journey. Which is why in 2011, we began the Mattie Miracle Child Life Program Fund. A fund which memorializes the special connection between Mattie and Linda. 

Mattie Miracle started a Child Life Program fund at Children's Hospital at Sinai in July of 2018. We are paying Adina's salary.  Today was the first time I met Adina, and had the opportunity to get to know her and see her interact with patients. 

It is clear she loves her job and connects with her patients and families beautifully. 

Adina and me! We spent about three hours together today, and I look forward to future visits. 

One of the highlights of my visit was meeting Sara. Sara is 20 years old, and is simply put a remarkable young woman. When you talk with her, you think you are chatting with someone in their 40's. She is wise, has great introspection, appreciation for life, and those around her. 

Sara is interested in becoming a mental health provider and also starting a non-profit. It is my hope we can stay connected with one another because she is the perfect reason why I work hard to raise money to fund our services. The Snack Cart puts a smile on her and her mom's face, and seeing this for myself, was the greatest gift. We could all learn a lot from Sara and even though I saw cancer through Mattie's eyes, hearing Sara's story and her outlook on life was humbling. 

Wednesday, March 6, 2019

Wednesday, March 6, 2019

In March of 2004, Mattie was almost two years old. That weekend we took him to the DC Children's Museum. This was the first and only time Mattie visited that museum. The museum featured all sorts of vehicles and Peter was trying to show Mattie the motorcycle. Mattie loved anything and everything that moved. But his eyes were transfixed on the RED fire engine, featured on the left hand side of this photo (out of view).


Quote of the day: I'm exhausted trying to stay healthy. ~ Steve Yzerman


I am working hard at trying to pass a kidney stone, if that is even possible. So much about our physical health is really out of our hands. I learned this early in life, when seeing Mattie diagnosed with cancer.  The kidney specialist gave me Flomax to take, which is typically a drug given to men. However, in women, 
the drug is prescribed to help with bladder blockages or obstruction to help urinate more easily. 

I find all of this immensely funny, because now on top of kidney stone issues, I am facing the side effects of Flomax. Which includes congestion and extreme tiredness. The kind where you don't feel like you can keep your eyes open! The reason I find this so ironic, is that my kidney stones are a result of taking a migraine medication for two years. So I tried to manage the headache, but in the process got kidney stones. It just seems to me when you work with the medical community on one issue, several others appear to pop up! 

In the process of all of this, the doctor's office called me to schedule a surgical procedure for March 21, in case I don't pass the stone. I understand the importance of doing this, but honestly I am hoping my body works with me to push this out on its own. 

For me, it has been one physical issue after the other, with very few breaks in between. I know I have talked to other moms whose children have/had cancer, and they report similar health concerns. Which simply reminds me how intertwined our emotional health is to our physical health. There is something about childhood cancer that is so detrimental to a parent's health, and though research may shed some light on this phenomenon, I have lots of anecdotal evidence to confirm my feelings. 

Tuesday, March 5, 2019

Tuesday, March 5, 2019 --- Mattie died 493 weeks ago today.


Tonight's picture was taken in March of 2005, on Easter. Mattie was invited over to celebrate the day with his cousins. Basket in tow, Mattie was ready to hunt for eggs. Of course with Mattie, he wasn't as eager to find eggs like other kids. Mainly because he knew eggs were filled with candy. Why Mattie wasn't intrigued by candy, I have NO idea. When it came to anything sweet, he and I were exact opposites. 









Quote of the day: A word of encouragement during a failure is worth more than an hour of praise after success. ~ Unknown


Three weeks ago I took a CT scan of my abdomen. It was then I learned about having two kidney stones. One which was hanging out in my ureter. Thanks to my urologist, she helped to fast track me into seeing the director of kidney stone disease at Mattie's hospital. In fact, I saw him back in 2015, when I was suffering from kidney stones. Back then, I as toggling between him and a nephrologist at another hospital. I literally took advice from both of them, and integrated their advice into my daily living. 

I was upset to learn that I had kidney stones again (four years later), especially given that I am following their advice about fluid, drinking the juice of real lemons daily, and taking a citrate vitamin supplement. In any case, I had to take a KUB (Kidney, Ureter, Bladder) x-ray today, before seeing the doctor. I know how Georgetown radiology operates, so I literally went two hours before my doctor's appointment to ensure I had enough time. When I arrived, radiology was chaotic and standing room only. But I KNEW it would be that way. You learn a thing or two after living in that hospital for over a year. 

But it worked out and within only thirty minutes, I had the test down and they even handed me the films. I was stunned, but wasn't going to complain. I then went to have lunch on campus because I had time before my appointment. I went to a restaurant, where I went so many times while waiting for Mattie to come out of surgery. Everyone around me changes, but the physical space, can take me right back in time. 

As tonight's quote points out, there is something to be said about encouragement. The doctor today could see I was in pain and wanted to give me a ray of hope, mainly because I wanted to know what I was doing to bring about more stones. But here's the thing! What he told me was he compared my films in 2015, to the one from today. The stone that is passing today, is a stone I had from 2015. In 2015, I had three stones in my left kidney. I passed one back then, and I am on my way to passing a second one now. With the remaining stone still sitting in my left kidney. In three weeks time, from the CT to today's x-ray, my stone migrated further down my ureter, which is why I am in so much pain. The stone is 3mm, it's small, but wow! What I am trying to say is the good news is I am not producing new stones. 

How did I get the stones in 2015? Well we all deduce it was from taking Topamax, a drug I was taking for migraines. When my neurologist heard I was getting kidney stones, he immediately flagged the problem. Thankfully, otherwise, I would be filled with stones!

Today's visit has armed me now with pain medication and a list of what to do's! I see the doctor in a week and if the stone doesn't pass, he wants to do surgery. But we are both hoping to avoid that option. After spending several hours in the hospital, I then went up to the pediatric units as I had committed to push the Mattie Miracle snack cart today. Though I probably was not in the best physical shape or spirits, the cart was greeted with sheer appreciation and thanks. My visits continue to confirm the cart's importance.

Monday, March 4, 2019

Monday, March 4, 2019

Tonight's picture was taken in March of 2005. Mattie was almost three years old and as you can see, he and Peter were using plastic toy food to make funny faces. You may not recognize what face they were making, but they were showing me their "roach" face! Not my favorite creature, as Mattie knew all too well. 


Quote of the day: The greatest evil is physical pain. ~ Saint Augustine


I can appreciate St. Augustine's quote. Though I realize emotional pain is equally challenging and perhaps more complicated because it isn't as well understood or seen. However, today I am feeling pain from one of my kidney stones. I am headed to see the nephrologist tomorrow, for additional testing and next steps. But he better have some answers. He is located at the hospital Mattie was treated at, so it is always eerie going there on a Tuesday. Of course everyone I interact with tomorrow at the hospital won't know this, or would take the time really to even hear my story. Nonetheless, the story comes with me and influences every medical interaction I have. 

I had the opportunity today to have lunch with my friend Christine. Christine's son, Campbell, and Mattie were very close friends in kindergarten. They played beautifully together and brought out the best in one another. Of course through the process of their play, Christine and I had the opportunity to get to know each other over that year. We instantly clicked back then, so forming a friendship was not hard.

Now ten years after Mattie's death, we are still friends. Of course our friendship has changed, as we don't see each other all the time, our kids don't hang out with each other, and we don't share similar school functions. That alone could sever a friendship, but because we share common values, views, and appreciate each other, our friendship continues. Christine also runs the Mattie Miracle Walk's registration process each year, which is no small undertaking. I am grateful that she is committed to the Foundation and helping us keep Mattie's memory alive. 

Another one of many reasons I love time with Christine, is she is not afraid to talk about feelings and the emotions that still exist in her family over the loss of Mattie. One would think after ten years, I don't need to hear this, but that is actually not true. I value openness and I want to hear how Mattie's loss affects others. I appreciate this because it enables me to know that I am not alone in my feelings, that others are also impacted long-term, and that Mattie's memory is alive and well in our friends. That is a gift!

Sometimes I don't realize the magnitude of Mattie's loss on his friends or our friends. So hearing about it candidly is important. People do not tell me this to make me feel guilty, but I am saddened that Mattie's friends are in essence forever changed because of his death at such a young age. Children are very perceptive and intuitive beings, and though children may not express or show grief like adults, I do believe this sadness comes out in other ways. One of which is a pervasive insecurity about the world and a level of anxiety that can't be understood by the untrainer observer. I am not sure how to help others impacted by Mattie's loss, other than to listen, absorb, and reflect.  As I know these are things that help me. 

Sunday, March 3, 2019

Sunday, March 3, 2019

Tonight's picture was taken in March of 2006. As you can see, Mattie and Peter were on the floor designing all sorts of things with Legos and train tracks. With Mattie, the possibilities were endless when it came to building. He could do this for hours, if he had a companion next to him. Peter and I, served as that companion for seven years. 


Quote of the day: Until one has loved an animal, a part of one’s soul remains unawakened. ~ Anatole France

The day started with Peter picking up Indie from boarding. Indie was thrilled to see Peter and the beauty of her, is she bounces back to being home immediately! 

Unlike our former cat, Patches, Indie is easy going and adapts to her environment!

Mid-morning, we decided to start wrapping the Foundation's 10th anniversary gifts that we are giving to our core volunteers next week. Before I left for Atlanta, I ordered all sorts of gold themed wrapping paper. When I opened up a roll today, this is what I found..... torn paper and someone had literally used packing tape to put it back together. Needless to say, this is getting reported and we are going to ask for our money back!

What you saw above was one part of the roll, and what you see here was the other half. Notice that the gold stars are missing on most of the paper. This whole roll of wrapping paper is defective!

Meanwhile, while wrapping, we received a visit from a hawk. Right in the tree outside our window. I will never forget the last time I saw a hawk in that tree. Mattie was a toddler. He and I both observed a hawk swoop down on our balcony and grabbed a sparrow and flew away. Mattie and I were both very upset by this sighting! Somehow seeing this hawk today in the same location, evoked that memory. 

In the afternoon, we picked up Sunny! He was thrilled to bolt out of boarding and escape to the car. We had the window down for him to smell the fresh breezes and then we walked him for an hour. He was one happy camper. 

But overall, it takes Sunny a day or two to recover from boarding. He is a bit anxious tonight and staying close! Like glue!