Tuesday, March 14, 2017

Tuesday, March 14, 2017 -- Mattie died 391 weeks ago today.

Tonight's picture was taken in August of 2008. Mattie had just been diagnosed a few weeks before this photo was taken. Pictured with Mattie was Margaret. Margaret was Mattie's first preschool teacher and we all hit it off splendidly. So much so that within that first semester of school (in 2005), Margaret and I developed a friendship. As she used to say, I was one of her "dear" friends and she felt that she only had a handful of them. Margaret died three years ago of ALS, so it is hard to imagine that both she and Mattie are now gone. I post tonight's photo because today would have been Margaret's birthday and we always celebrated that occasion together. 


Quote of the day: The beauty of a woman is not in a facial mole,but true beauty in a Woman is reflected in her soul. It is the caring that she lovingly gives, the passion that she knows. ~ Audrey Hepburn

It is absolutely frigid today and we spent the day at home. Almost quarantined doing what else.... work! Peter was home from work because of the snow and Sunny did not know what to make out of both of us. 

I took a photo of a handmade doggie shamrock cookie that Sunny's groomer makes for her special customers. She considers Sunny special. Who could blame her. In any case, the cookie was demolished within minutes. 

On our walk outside this afternoon, I saw a cute snowman that our neighbor's children created. I think he is absolutely adorable! But I rather see no snow in March!

Look at the poor daffodils through the snow. I am not sure how they are going to make it! One thing I learned however is that Sunny doesn't like snow. He doesn't like walking in it or through it which makes it difficult for potty runs. 

In the midst of walking Sunny, I also learned that DC rats love to come out in the snow. Some of them are as big as cats in the broad daylight. Sunny wanted to catch them, so we had to have a meeting of the minds because I don't want to come anywhere near a rat. Much less chase one. 

Monday, March 13, 2017

Monday, March 13, 2017

Tonight's picture was taken in April of 2008. It is hard to believe that three months later, Mattie was diagnosed with cancer. Mattie came home from school the afternoon this photo was taken, and it was too beautiful of a day to spend it inside. So we went out into our commons area and flew a big dragonfly kite. Ironically Mattie and I found just the right place to stand in our commons area that would lift a kite up into the air. These were special moments and I appreciated them then, but they have a different context now. 


Quote of the day: Three things in human life are important: the first is to be kind; the second is to be kind; and the third is to be kind. ~ Henry James


There is a lot of truth to Henry James' statement, but being kind is not always easy. Depending upon the circumstance it can be downright impossible. I had the wonderful experience today of receiving unexpected kindness (the best kind), and then later in the day I had to rise to higher ground and provide kindness. Which I will try to explain without elaborating too much. 

Our car needed its six month service today, and while waiting for it, I went to a nearby Starbucks. As I was sitting an older gentleman made eye contact with me and smiled. Later before he left, he came up to me to tell me that he wanted to give me a compliment and asked if that was okay. Who doesn't accept a compliment? Well in today's day and age, I maybe surprised by that answer. Anyway, he wanted me to know that he thought I was an elegant lady and then proceeded to hand me his business card. He is a photographer and asked if I ever needed the service of a photographer to contact him. I was very cordial but did not share anything about myself. As the day wore on I felt saddened to know that we live in a society where we can't freely communicate with each other because there are potential dangers with safety. Now of course this man may have been as nice as pie, but you never know. So I feel the inner conflict of the need to be kind and yet cautious. 

Meanwhile later in the afternoon, I found out that another non-profit group wanted to replicate a service Mattie Miracle offers. That wasn't the issue I had, the issue I had is I approached a local hospital and asked to work with them. In reality I had asked this other hospital twice! Each time, I was turned down and was told the service I was suggesting wasn't needed at their hospital and that they did not have the staff to fulfill this service. I can't argue with NO. Now I learn that this other childhood cancer foundation wants to use our model and this hospital is allowing them to bring in this service. The same service which I was told.... NO! You can imagine my shock. If the hospital had just said.... another organization is going to provide this service to us, I would have accepted it. But to say our service wasn't needed or of value to them, is where I take issue. Especially since I know that it is a very successful service that we offer at other hospitals. There are two options..... either I could be snippy about this or two I could move to higher ground and try to help this non-profit establish the service, which will ultimately benefit children and families. I chose to be nice, because my goal is for families to get support, it shouldn't matter how or who gives it to them. Yet of course, I am still not pleased with the way this hospital managed this gift we wanted to provide.  

Sunny had his grooming today! Look at this handsome fellow. His groomer always gives him a festive bandanna, which she makes herself. Sunny is ready for St. Patrick's Day!

Sunday, March 12, 2017

Sunday, March 12, 2017

Tonight's picture was taken in April of 2009. Mattie received this cute alligator hand toy. Despite how Mattie was feeling, he never lost his sense of humor. As I was opening and closing the gator's mouth, Mattie was mimicking what he saw. I remember this moment in time like it were yesterday. 




Quote of the day: If your body is screaming in pain, whether the pain is muscular contractions, anxiety, depression, asthma or arthritis, a first step in releasing the pain may be making the connection between your body pain and the cause. Beliefs are physical. A thought held long enough and repeated enough becomes a belief. The belief then becomes biology. ~ Marilyn Van Derbur


I think tonight's quote could also be applied to grief and trauma. Surviving after a child dies, does have consequences. Our thoughts and feelings about this loss do get translated into real physical problems. It would be wonderful if releasing the pain were possible, but death isn't an isolated issue. Instead, with each phase of my life, special occasions, milestone moments, and even in my every day life, issues arise that force me to re-examine how my life has changed. After a while, the accumulation of losses (e.g., losing Mattie, which triggered a host of other losses.... loss of the identify of being a parent, loss of friends who are parents, loss of being connected to a school community, loss of Mattie's birthday's, graduations, and the list goes on) does become overwhelming. 

Since Mattie died, I have experienced a host of medical problems. The most recent is being diagnosed with Fibromyalgia, which is a disorder characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues. However, if you look at the causes of this disorder, one of the top culprits is experiencing a trauma. This week I have been dealing with a flair up of symptoms, and I have no specific explanation as to what triggered them. All I know is I am exhausted, can't get comfortable, and have shooting pains. It is my hope that as mysteriously as this came on, it goes away. 

Saturday, March 11, 2017

Saturday, March 11, 2017

Tonight's picture was taken in May of 2009, during the Mattie March. The Mattie March was the predecessor to the Mattie Miracle Walk. As you can see Mattie was alive and in the center of the photo. Mattie's school community hosted an event on the campus to raise money for Mattie's care and to also show Mattie that his friends and family were behind him on this battle. This meant a lot to Mattie because while battling cancer, he did not go to school nor see his friends. It was a very isolating journey for him. I had a college student interview me today for a class assignment and she wanted to know how the Foundation decided to host an annual walk. In all reality the Mattie Miracle Walk is a continuation of a tradition that Mattie's School established for us in 2009. Since that initial event at the School, the walk has grown and evolved, but the premise and inspiration for the Walk originated with our care community. I find this is a very meaningful tribute to the memory Mattie left behind. Though Mattie isn't physically with us at the Walk, the Walk is always bittersweet for us because being on the School's track takes us back to the event in which Mattie was right by our side. 


Quote of the day: It is an absolute human certainty that no one can know his own beauty or perceive a sense of his own worth until it has been reflected back to him in the mirror of another loving, caring human being. ~ John Joseph Powell

This is what I woke up to this morning right outside my window.... The Rock and Roll marathon. I can always tell when Route 66 is blocked off because we don't hear any traffic going by. Which is totally unusual. This was a fun sight to watch, even Indie the cat was on the window sill checking it out. 

Meanwhile this afternoon, a rainbow formed on our wall. We both love seeing rainbows as that too reminds us of Mattie. In any case, Peter wanted to know what was causing this rainbow and went downstairs to explore for an answer. 

The sun was reflecting through our Flame of Hope award that was given to us by MedStar Georgetown University Hospital. Seems rather symbolic that it was this award causing the rainbow. An award we received for the work we do in Mattie's memory!!!


We were on a mission today for find the right frames to start featuring some of the amazing photographs we have taken throughout the years. We have a blank wall in our bedroom. It is blank because a few years ago, we went on a cleaning spree and also painted every room in our home. With that, it left several walls quite bare. I have been dealing with that, but have wanted to create a wall that highlights some of the places we have visited and another wall that highlights some of the wonderful nature photos we have captured. So today, we purchased 15 large frames. So we are well on our way to making this a reality, now it is a matter of selecting photos. Which won't be easy, since there are so many I love. But once the wall gets transformed, I will share the final product. 

Friday, March 10, 2017

Friday, March 10, 2017

Tonight's picture was taken in April of 2008. Mattie was sitting in his kindergarten classroom and I got to visit that day and see some of the things he had been working on in class. Mattie's kindergarten teachers worked with the children on learning to write and did it through telling stories. The teachers had Mattie bring in photographs of activities that meant something to him. Then he would develop a story based on the photo. Though I am not for certain, I do think the story Mattie was telling in his book was the time he and I saved six ducklings that fell down a sewer grate. It was a clever way to learn how to write and spell and at the same time develop the skill of telling a story. Which to me is a life skill, since great learning and communication occur through stories. 


Quote of the day: If you feel lost, disappointed, hesitant, or weak, return to yourself, to who you are, here and now and when you get there, you will discover yourself, like a lotus flower in full bloom, even in a muddy pond, beautiful and strong. ~ Masaru Emoto

This photo was sent to me this morning by our friend Laura, who is an international pilot. I have never met Laura in person, but got to know her through emails during Mattie's cancer battle. Laura is the niece of a colleague of Peter's. Yet after all these years, she still keeps in touch with me and whenever she captures a moon shot from the cockpit, she sends it to me..... letting me know that Mattie Moon is with her. 

Isn't that just the most wonderful gift? Mattie means something to Laura, a young woman who never met Mattie, and yet feels a connection to him and to us. To me this is super special.

This is the moon over Greenland today!!!

Meanwhile our April Item drive is growing. I had things in a closet last week, but now as boxes are being shipped to us they are taking over Mattie's room. A great problem to have. 

Every April, Mattie Miracle hosts an item drive in honor of Mattie's birthday. With each successive year, the amount of items we receive grows. Since we are supporting two snack/item carts now, the more toiletries we receive the better. These donated toiletries help to stock the FREE carts we provide to families caring for children in the hospital (MedStart Georgetown University Hospital in Washington, DC and Children's Hospital at Sinai in Baltimore, MD). The cart revolves around the pediatric units three times a week and parents are stunned to receive nutritious snacks, candy, drinks, and toiletry items for free. The reason this is crucial is because parents typically are unable to get their own needs met while caring around the clock for a child in the hospital. In 2016, I started visiting the Hospital monthly to push the cart myself because I wanted direct feedback about the cart and to get a better feeling for what items were needed and are most popular. 

We have created an Amazon Wish List. Not unlike a bridal registry. People from all over the Country can participate in our Drive, and are!!! To see our wish list, go to:
https://smile.amazon.com/gp/registry/wishlist/2UQOK4GY955ZL/ref=cm_wl_list_o_1?

Thursday, March 9, 2017

Thursday, March 9, 2017

Tonight's picture was taken in April of 2008. Mattie was six years old and doing what he loved to do on our deck.... which was either play with water or sand. Not many plants got watered, but the deck always got a great bath, not to mention Mattie would be soaked. 



Quote of the day: If you think dogs can’t count, try putting three dog biscuits in your pocket and then giving Fido only two of them. ~ Phil Pastoret

Today was a beautiful weather day in Washington, DC and as a result many people were out walking their dogs. For me, watching dogs approach other dogs is a riot! For the most part, they usually want to meet and greet each other. They are truly social beasts and for the most part, unlike humans, have no hang ups with one another. I met many dogs and their owners today. But one man stands out to me because he had a four month old King Charles Spaniel by his side. Rosie the dog was absolutely adorable and Sunny was intrigued to meet her. Sunny is a peach because no matter how a dog reacts to him, he is always calm and cool. He never becomes aggressive, but he can hold his own if he has to. 

Anyway the owner of Rosie commented to me about Sunny's, "Queen spot." I honestly had NO IDEA what he was talking about. So he showed me the Queen spot on Rosie, and just like Rosie..... Sunny has a tan round spot on the crown of his head. Apparently this is a tell tale marking on King Charles Spaniels. But Sunny has one too. The story is that this is the spot that the Queen would kiss on a dog. Whether a tall tale or truth, it is an adorable story. 

So I looked it up, and the Cavalier King Charles Spaniel has four recognized colors, the Blenheim (rich chestnut on pearly white background)
being the most popular color. This spot has been affectionately called "the kiss of Buddha," "Blenheim Spot," and "the Kissing Spot."


I took a photo of Sunny's head.... see the spot?!

Sunny sticks close to me at all times. If I am working at my desk, he is right behind me. 

I took a break from working to pet Sunny, and I got this.... HI HOW ARE YOU look that I love so much!

Sunny's adventure today through the ivy! Sunny doesn't get a chance to be off leash often. But in our commons area, I am beginning the off leash process. This area is completely enclosed but because this space leads into multiple buildings if the doors are left open, Sunny is never there without supervision. 

Wednesday, March 8, 2017

Wednesday, March 8, 2017

Tonight's picture was taken in April of 2008. Mattie received a birthday gift from a former neighbor who moved to NYC. When the neighbor mailed the gift to Mattie, there were all sorts of fun pictures and sayings all over the outer brown packaging paper. Mattie thought this was a riot and wanted to display the paper. We had it hanging on the wall for about a week. We shared this photo with our neighbors and they appreciated knowing how much this meant to Mattie.






Quote of the day: A failure is not always a mistake. It may simply be the best one can do under the circumstances. The real mistake is to stop trying. ~ B. F. Skinner

Sunny and I went on a three mile walk today to pick up items that were being donated to us from Scout Bags. The owners of Scout have a child, now an adult, who is a cancer survivor. I am very familiar with Scout Bags, as they are a huge rage in Alexandria, VA. Nonetheless they are sold all around the world and the ironic part about all of this is when I went to a hospital fundraiser a few weeks ago, we were assigned to sit at a table and my place card put me right next to one of the owners of Scout Bags. We got to talking and I told him about Mattie Miracle and our annual raffle. He suggested I email him a request for items, which I did the next day after the dinner. To make a long story short, Scout Bags donated 8 bags to us today, one for practically every occasion. We have never had a raffle item of Scout bags before, so this is definitely a new basket idea to sell this year. 

The ladies loved meeting Sunny! We took a posed picture as you see above and then a photo with everyone doing a pose! Sunny was very compliant with the whole process!

On our walk back home, we passed the Potomac River. Sunny just loves watching and chasing the geese! I have been posting photos of Sunny on Facebook lately and one friend suggested to me that Sunny get his own Facebook page! Totally fun..... the adventures of Sunny!

This is what the eight items donated to us look like. Scout bags are made out of an almost indestructible material and come in all sorts of ever changing vibrant shapes and colors. They are fun and useful bags to use for travel, storage, etc. 

This is the story on Scout.....

In the early 2000’s, when co-founder and creative director Deb Johns was on a trip in Milan, a chic plaid carryall in the window of the Helmut Lang store caught her eye. She remembered selling a similar looking bag (at a much more affordable price) during a recent run of her pop-up shop, Fifi.

In this a-ha moment, Deb realized that if she were to create her own line of tote bags that perfectly blended fashion and function; and, if it came at a better price than its high-fashion counterpart, women and families would come calling. Shortly after, Deb Johns and her husband Ben Johns started SCOUT (they named the company after a beloved family dachshund). The SCOUT collection has since grown to include accessories, coolers, storage, and rugs.


As creative director, Deb has an incredible knack and passion for bringing the new and re-invented together in a very fashionable and irresistible way. This drive for reconception inspires new SCOUT collections.

Tuesday, March 7, 2017

Tuesday, March 7, 2017 --- Mattie died 390 weeks ago today.

Tonight's picture was taken in April of 2007. Mattie was five years old. Peter and I took Mattie to Luray Caverns in Virginia. We had a feeling Mattie would love that adventure, and of course we were right. Mattie gravitated to nature, wanted to always understand how things worked and had a natural curiosity! I'm glad we did so much with him with so little time. 


Quote of the day: How can a person deal with anxiety? You might try what one fellow did. He worried so much that he decided to hire someone to do his worrying for him. He found a man who agreed to be his hired worrier for a salary of $200,000 per year. After the man accepted the job, his first question to his boss was, "Where are you going to get $200,000 per year?" To which the man responded, "That's your worry. ~ Max Lucado


To all my fellow worriers, I think you will appreciate tonight's quote! If we can't laugh over our worries, then alternative isn't pretty! In a few weeks, Peter and I will be leaving town to acknowledge Mattie's birthday. We go away each year. Why? Well maybe not for the reasons you may think. I have found as the years pass by, people forget about Mattie and in addition to that they forget his birthday, and what an important date this still is for us. I am not blaming others, I am just stating the reality. Though I have learned that sometimes my blog is perceived as hurtful. I suppose if I am hurting you as the reader, then try to imagine the magnitude of my own feelings. I use the blog to process my thoughts and feelings, because without that, there aren't too many healthy outlets for bereaved parents to turn to. Ultimately my goal isn't to make others feel bad, but instead it is my hope that my words allow you a glimpse into how a bereaved mom maybe feeling long term. 

In any case, since we will be going away soon, I need a place I can bring Sunny to that is safe and I don't have to worry about him. There's that word.... worry. Something I have perfected over the years. Finding the right match for Sunny is challenging. Sunny is very emotional and human focused. He requires a lot of attention and when he doesn't get it, you can see his sadness and anxiety. Today I brought him to doggy daycare and boarding facility in Alexandria, VA. My goal is to give Sunny a few days of daycare to start to get used to the facility before boarding. 

What I love about the facility is it is very clean, everyone who works there is friendly and loves animals, and they also have various playrooms for your dog based on his personality. 

Notice that each playroom has a webcam, so I can watch Sunny from my computer or iphone! Which I LOVE! Notice where Sunny is here.... practically sitting on the staff member.

Later in the afternoon, the general manager went in to check on the dogs and look who is right by her side. He followed her around the room. 

When I picked up Sunny, they handed me this progress photo for the day! Absolutely adorable no? Sunny made friends with the leaders of the pack but was shy and in my opinion anxious all day. He parked himself by the door of the room for a good portion of the day. They tell me this is normal. They gave me the analogy of a new kid at school who enters school mid-year. Many of these dogs know each other already. However, humans and dogs are quite different and while we get hung up on these deep fears and worries, dogs are not necessarily that way. It is my hope with a few more sessions, Sunny moves away from the door and gets acclimated. Sunny was placed in the most sedate and calm room today. They have three other rooms that vary in energy levels. 

Monday, March 6, 2017

Monday, March 6, 2017

Tonight's picture was taken in April of 2007. Mattie was five years old and what I love about this photo was the fact that I caught Mattie doing what he loved to do best.... create with packing boxes. Notice the plate on the floor. Mattie did not like to take the time to eat, but would eat if you left snacks by his projects. He ate on his own time frame! Our home at one time was filled with Legos, just about in every room. Mattie gravitated to building and designing. Which was why I called him my little engineer. 


Quote of the day: Pleasure is the flower that passes; remembrance, the lasting perfume. ~ Jean de Boufflers

Last Tuesday, February 28th, Mattie Miracle hosted an appreciation dinner for volunteers. We do this every year before our Walk to thank our core volunteers for their amazing service to the Foundation. Many of our volunteers have been working with us since the inception of the Foundation. 

I love flowers, so I made these flowers to decorate our dinner table. 

It dawned on me that I never posted these photos from last week. We had 19 volunteers at our dinner held at the Del Ray Cafe. The owners of the Cafe have supported Mattie Miracle's raffle each year with a generous gift certificate. 

So when I decided to pull out of the previous restaurant we used for our volunteer dinner, I gave it great thought as to who to work with and develop a relationship. I felt it was important to select a restaurant whose owners were behind our mission. This Barn Room, which was a private room, was the perfect setting for our dinner. 

I think this may have been our best and most cohesive dinner yet. There is something to be said about good food, wine, and the right environment! 

The group truly enjoyed hearing an update about the Foundation and our accomplishments to date. We even brought "props" with us, so our volunteers could see the many publications we have contributed to and our desire to expand the message that.... psychosocial care must be a part of comprehensive cancer care. 

Sunday, March 5, 2017

Sunday, March 5, 2017

Tonight's picture was taken in April of 2007, at Mattie's 5th birthday party. This party was one for the books! I held it at the National Zoo. They have special party rooms and assign you a zoo member who gives you a private tour of the zoo. Well that day there was rain, and I mean torrential rain. I thought the party was going to be a disaster with a bunch of five-year-olds walking in a deluge. The zoo has a rain or shine policy, so the party had to happen. What surprised me was the kids LOVED being in the zoo when it was pouring. In fact, so did the animals. They were all outside and loving the rain. The weather made it a real adventure and I am not sure it would have been such a memorable party without the help of Mother Nature. The zoo gave every child a safari hat, and to this day this hat sits in Mattie's bedroom. 


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

For the past 8 weeks, Sunny and I were enrolled in a basic dog training course. I have to tell you, if someone told me I was going to be doing this, I most likely would have said NO! However, soon after we adopted Sunny, I felt his demeanor, personality and disposition would make him the perfect therapy dog. Particularly to help fulfill Mattie Miracle's psychosocial mission. Not sure how we lucked out with getting Sunny, since rescue dogs tend to come with a lot of baggage. Sunny thrives on human attention and love. Which is why a therapy role would be mutually beneficial..... good for a child and good for Sunny. Within a few weeks of owning Sunny, I started researching pet therapy certification programs. There are MANY, but they are NOT all alike. Some require a great deal of training/education, such as the National Capitol Therapy Dogs program. Mind you this is the only program that certain hospitals accept like Georgetown University Hospital and the Children's Inn at NIH. Which is why I decided to invest in this certification. 

Given the requirements of National Capitol Therapy Dogs, I couldn't just apply to enter into the pet therapy certification program without pre-requisites. Sunny needed to obtain his Canine Good Citizen certificate first, which he did on December 4, 2016. However, to date Sunny has taken a total of 12 training classes, and I am happy he graduated today. 

Now I can officially apply to enter the pet therapy certification program. I say I, because it is a program for dog and handler. I have learned with training, competition, or certification.... both dog and handler are being assessed. Here are the requirements:

Step 1 - Your dog must pass the AKC Canine Good Citizen test before you start NCTD classes. 
Step 2 - You take a 5-hour class, for handlers only, to review important information you need before you visit with your dog. 
Step 3 - You and your dog take a 6-week training class that covers appropriate visiting behaviors and techniques. 
Step 4 - You schedule an NCTD evaluation for you and your dog, usually within a few weeks after your last class. 
Steps 5-8 - After you pass the NCTD evaluation, the Director of Volunteers will help you find a facility to visit. You will also be assigned a mentor, who will accompany and assist you until you are comfortable visiting on your own.