Saturday, December 17, 2016

Saturday, December 17, 2016

Tonight's picture was taken in December of 2008. Our last Christmas with Mattie. I will never forget that moment in time because Mattie was home from the hospital and was absolutely miserable. He was dealing with pain, anxiety and depression. Of course hospitals can't wait to discharge patients close to the holidays. I am sure they think this is where their patients want to be.... HOME! However in our case, we were better off in the hospital than at home. For multiple reasons, but mainly because in the hospital we weren't alone and we had constant support both medically and psychosocially. As you can see here, both Peter and Mattie had Christmas items on their head. We got these items from friends in our Team Mattie community. Mattie was in such a bad place emotionally that Peter decided to get goofy and encouraged Mattie to play along. So though this may look like a fun and light photo, it was anything but that!


Quote of the day: Every day is a journey, and the journey itself is home. ~ Matsuo Basho

It was a frigid day today, in the thirties, and this morning everything was covered in ice! In fact, our neighborhood lost power, but thank goodness we still had it. I say this because we had hours upon hours of Foundation work to do in order to get ready for our trips to Boston and then Florida for the holidays. 

By 3pm, Sunny had it with us! He wanted a long walk. He was a great excuse for me to stop working, to move away from my desk and to take a three mile walk! 

This is the wonderful sight we saw along the Potomac River. The water was covered in fog and it was very surreal with Georgetown in the background. 

Sunny absolutely LOVED seeing the geese and there were many people stopping to take photos. After such a cold and icy morning, this was a peaceful and welcomed sight with the sun setting in the background. 

As of tonight, work is done, we are packed and all four of us (Peter, me, Sunny, and Indie) are driving to Boston tomorrow. It should be a long trip and it is my hope that we have animals who like car travel!

Friday, December 16, 2016

Friday, December 16, 2016

Tonight's picture was taken in December of 2008. Just like all the other months, Mattie spent most of December in the hospital. Mattie's child life specialist, Linda, helped greatly by giving us Christmas lights and other things to decorate our room. We had a reputation in the PICU, because with each hospital admission, I always decorated Mattie's room. It was NEVER boring in the room. Certainly it took more effort on my part (because I had to pack, unpack, and organize items), but I was determined to make the room look more like a home than an institution. The room at Christmas time was twinkling and as you can see Mattie decorated his wheelchair with a Santa and he decided to wear the Christmas stockings that friends gave him for his home! But check out the donut. Mattie went through a donut phase in the hospital. He couldn't get enough frosted vanilla donuts with sprinkles. It was so much of a joke, that we called it his one donut a day diet. Given that Mattie did not feel like eating anything as a result of high dose chemotherapy, I welcomed whatever he wanted to eat.

We played this "One Donut a Day" song to Mattie OFTEN in the hospital. It always made him laugh..... https://www.youtube.com/watch?v=b36sUPqE8Gg



Quote of the day: Blessed is the person who has earned the love of an old dog. ~ Sidney Jeanne Seward

This was the sight I saw this morning while working in Mattie's room by the computer. I turned around, and apparently Sunny had hopped up on Mattie's bed! This is an absolute first, because usually this bed is reserved for Indie! He looks comfortable, NO!?

I met with my friend Margy today. Margy visits Mattie's memorial tree on special occasions. At lunch she showed me the Christmas ornament she purchased and plans to add to the tree. The ornament has jingle bells on it and I have no doubt Mattie would have absolutely LOVED IT!!!!

Meanwhile, Sunny went for his monthly grooming today. His groomer, Mandy, is in LOVE with Sunny. She always sends him home with homemade treats (that she bakes herself --- and they are wholesome and delicious according to Sunny) and a holiday scarf appropriate for the season. Can you see his poinsettia scarf???

When I drop Sunny off for the day at the groomer's, he always looks at me like..... YOU AREN'T LEAVING ME HERE, ARE YOU??? Sunny is very much attached to me and when I picked him up later in the afternoon, he could hear me in the lobby, and was getting very excited because he knew that meant he was going home. It is hard to believe we have only had Sunny since September. Four months is not a long time, yet he is very much a part of our family. 

Thursday, December 15, 2016

Thursday, December 15, 2016

Tonight's picture was taken in December of 2006. We took Mattie to visit Peter's parents for Christmas in Boston. Behind Peter's childhood home are woods. Peter spent many days as a kid in these woods and wanted to share that experience with Mattie. Mattie enjoyed the adventure, but wasn't appreciating my need to capture this in a photo. How do I know? I can tell by Mattie's expression. He was giving me one of his "false smiles," because I had asked him to pause and look at the camera rather than the stream. Nonetheless, I caught that moment. As we head up to Boston at the end of the week, we will now be walking Sunny in these woods. Mattie would have thoroughly enjoyed doing this, he would have loved Sunny's companionship, and they would have been a great twosome. 


Quote of the day: What good is the warmth of summer, without the cold of winter to give it sweetness. ~ John Steinbeck


I get Steinbeck's quote in theory, but in my reality, I do not need to experience Winter to have a great appreciation for summer. I could live with summer weather year round. Today was 21 degrees in DC, but with the wind chill it felt like 8 degrees! EIGHT degrees! The wind was whipping, and things went flying. I had a flower pot that went airborne and all three of our bird feeders toppled over! In the past, on a day like this I would have retreated inside. But with Sunny that is NO longer possible. Sunny likes to walk and he doesn't seem bothered by temperature extremes! For him it is business as usual. So I walked him 2.5 miles this morning in terrible wind gusts! Mind you I was the only person braving the streets in this. For the first 15 minutes, it is painful, but then when your whole body freezes over, you start to forget how cold you are. Sunny and I will be having many adventures together I can tell this winter. I am preparing myself. It is funny when I wish for 40 degree weather days back again. In comparison to today, yesterday felt like spring!!! Just to put it into context. 

This morning, Peter and I had a conference call with several professionals from Dominion Consulting. Dominion is Mattie Miracle's corporate donor. Peter knew many of these consultants when they worked together years ago at Arthur Andersen. I am deeply grateful that they stand behind our Foundation, us, and our mission. On January 24, the Foundation is holding an invitation only Round Table event on Capitol Hill to strategically focus with stakeholders [researchers, payors (such as private insurance and Medicaid), legislators, and advocates] on the implementation process for the Psychosocial Standards of Care. Though Mattie Miracle is sponsoring this, we felt that it would be important to have the session facilitated by a third party. So I reached out to Dominion Consulting, and they agreed to support us in this way. Which is a major gift given their level of expertise and skill set they bring to facilitation. We dialogued for 40 minutes this morning about how the event should go in order to maximize the time and energize the group to invest in this implementation phase and leave the event with solid tangible next steps and action items. 

Wednesday, December 14, 2016

Wednesday, December 14, 2016

Tonight's picture was taken in January 2009, as Mattie's friend Abbie was celebrating her 7th birthday. Though Mattie was in a wheelchair, he occasionally could stand for periods of time, and as you can see here, he was motivated and intrigued to share in this moment as Abbie opened her presents. Mattie and Abbie went to preschool and kindergarten together. When Mattie was battling cancer, Abbie was one of his friends that came often to visit him in the hospital. She did not seem to be intimidated by all the foreign hospital noises and smells. But instead was focused on playing and engaging with Mattie. It was a special friendship. 


Quote of the day: Many people will walk in and out of your life but only true friends leave footprints in your heart. ~ Eleanor Roosevelt

Today was Abbie's 15th birthday. Seeing Abbie grow puts Mattie's death further into perspective for me. Because in my mind Mattie is FOREVER 7! I feel trapped in that time period, and I have heard other parents who lost children (particularly only children) describe life in the same manner. Yet when I see Mattie's friends and classmates growing, it is cognitive dissonance (is the mental stress or discomfort experienced by an individual who holds two or more contradictory beliefs, ideas, or values at the same time) for me! The dissonance is I know Mattie died and would be 15 this April, but on the other hand, Mattie will always be 7 and a child to me and therefore I can't understand why others around me aren't standing still in time. My life has been permanently altered and as such it is hard to rationalize why others continue to evolve and thrive. 

In honor of Abbie's birthday, I contributed to her girl scout troop's fundraiser. The fundraiser is a flocking. In which a flock of pink plastic flamingos get placed on a lawn for a few days to share a message. After the message is delivered, then the flamingos take flight (or are moved by hand by the girl scouts) to the next house taking part in the fundraiser. 

This Fall I have been flocking houses all over Alexandria. It is limited to the Alexandria location, otherwise, this flock most likely would have been traveling some distances. It was important to me to thank many of my steadfast Mattie Miracle volunteers and I couldn't think of a better and more hilarious THANK YOU!

Tuesday, December 13, 2016

Tuesday, December 13, 2016 -- Mattie died 378 weeks ago today. 

Tonight's picture was taken in December of 2002.... Mattie's first Christmas. Mattie was 8 months old and as you can see adorable. But squirmy. It was hard to hold Mattie in one place for very long, which was why I was usually jumping around trying to entertain Mattie. You can see Mattie's left hand was blurry in the photo because he was moving so quickly!


Quote of the day: He is your friend, your partner, your defender, your dog. You are his life, his love, his leader. He will be yours, faithful and true, to the last beat of his heart. You owe it to him to be worthy of such devotion. ~  Author Unknown

I have been working non-stop for Mattie Miracle and today I tried to slow the pace down a bit. Of course with Sunny, that isn't possible. He needs walks. This was during our first walk in the morning. Sunny LOVES squirrels. So much so that he will stop in his tracks if he sees one up a tree. Today's stop was a good 5-7 minutes. Of course if the squirrel is on the ground, God help you. Sunny will practically drag you to catch it! I assure you Sunny can RUN. He is very muscular. Needless to say, I have many pedestrians who stop and talk with me because either they want to comment on his love of squirrels or they are perplexed as to what he is doing and therefore have questions. 

My long time friend Mary Ann came to visit me today. She brought Sunny and Indie several great toys, but in the midst of playing, Sunny gave me his paw. He does this often, to signal to me that he wants to be petted under his chin and neck! I call him my dancing partner. 

Meanwhile this is a daily occurrence in Mattie's room! Indie LOVES watching the birds at the bird feeders. It is her natural perch on top of Mattie's pillows! 

Monday, December 12, 2016

Monday, December 12, 2016

Tonight's picture was taken in December of 2004. This was classic Mattie and Patches. They were good buddies..... as they kind of trailed after each other. The irony is that Mattie grew into learning how to be a pet owner. When he was a toddler, he would chase her and try to pull on her fur. But after showing him several times how to interact appropriately with her, Mattie learned quickly. He then became protective of Patches. When friends would come and visit, who did not know how to interact with a cat, Mattie would correct them and show them. Patches was ALWAYS very patient. She never scratched or hissed at Mattie, and she sure had many opportunities to do so. But she just understood he was a valuable member of the household, and therefore bad behavior wouldn't be tolerated!


Quote of the day: To write is human, to receive a letter: Devine! ~  Susan Lendroth


Tonight's quote caught my attention. We live in the world of technology, so much so, that rarely do people write cards and letters to each other anymore. Think about holiday cards too! Do you remember when cards had hand written messages inside of them? For the most part, this doesn't exist anymore. Why is that? Perhaps technology can speed up what we otherwise would be doing by hand, or perhaps people are too busy to write in each card, or better yet we are so plugged in (if we choose) to people's lives through social media, that by the time you receive a card..... what's inside is old news! 

In any case, I went to the Foundation's post office today and mailed out our annual drive letter. I have no idea how we got into this tradition, but I believe it started early on when a friend of mine told me that people like to make donations by the end of the calendar year. So far, her advice has been spot on! Now some of our supporters begin contributing to us in November, because they just know our annual drive will be underway. Which is greatly appreciated. 

I am so thankful to Darryl at Mattie Miracle's post office in Arlington, VA. He saw we coming in with 500 letters today in a shopping cart and he came on over to help me. He stopped working with one customer to assist me. He saved me from having to wait in the long lines. He is a God sent and makes this mass mailing season slightly more bearable! 

Earlier this week, I waited on that horrible post office line TWICE to get my holiday stamps for the mass mailer. For the most part, people know they have to come into the post office with PATIENCE at this time of year. Well all except one individual. He was standing behind me and was irate that the man at the counter did not address his package. Instead he was addressing it while the rest of us waited. The man behind me shouted out.... "you have to be kidding, you think it is okay to make the rest of us wait while you do that?!" Though I understood his point, we really do not know why that man came to the counter without an addressed package. I would like to think there was a reason. In any case, I was deeply grateful not to wait in today's line! 

I remember year's ago, I would hand write notes in each of our Foundation holiday letters that went out. However, now that we are at 500 mailings, there is no way that is physically possible. It is hard enough doing the assembly of this process! I instead reserve notes in my acknowledgment letters. But this assembly of letters reminds me of my friend Margaret, Mattie's preschool teacher who died from ALS. Margaret helped me with my December mailer through the years. We would spend hours on it, have desserts, tea, and chat the time away. It made a tedious task fun. 

Within our December letter is also a little gift we give to each of our supporters. The gift changes yearly, but we feel it is important to give a small token of thanks because without such financial support and kindness Mattie Miracle wouldn't be able to operate. Our supporters keep us solvent but most importantly they help us keep Mattie's memory and legacy alive. 

Sunday, December 11, 2016

Sunday, December 11, 2016

Tonight's picture was taken in December of 2004. Mattie was two years old and LOVED building! He did not only like to assemble things, but he also liked to dis-assemble as well as rebuild. At the age of two, Mattie was using a screw driver. He could take apart his toys, but then enjoyed putting them back together. It was a sight to see, which was why I always called Mattie my little engineer. 


Quote of the day: The Christmas tree is a symbol of love, not money. There's a kind of glory to them when they're all lit up that exceeds anything all the money in the world could buy. ~  Andy Rooney

We went to Mattie's school today to decorate his memorial tree for Christmas. We removed the beautiful yellow and gold bows and the plastic sunflowers that I had attached around the bark of the tree. The gold has been replaced with red! Mattie's favorite color and very appropriate for Christmas. We also placed Christmas ornaments on the tree. For Peter and I, this is the only tree we will be decorating. The last Christmas we decorated our home, Mattie was alive and it was 2009. 

You may notice a red glass butterfly in the upper left part of this photo. This butterfly was given to me by my friend Margy. Specifically for Mattie's tree. As Margy knows that the butterfly is symbolic of Mattie to me. 

When I arrived at the tree today, I found the butterfly NOT on the tree but sitting within the plastic sunflowers around the tree. I am so glad that someone tried to protect the butterfly and did not throw it out. I put a Christmas ribbon around the butterfly and rehung it. 

Guess who came with us for the decorating? Sunny was very patient and watched the whole process. Mind you we were outside doing this in 30 degree weather! It was frigid! But we managed then took Sunny for a short walk and a trip to a new dog store in Alexandria. Sunny came away with a doggie homemade gingerbread cookie (which he was timid about at first, but then devoured it) and a bully stick. I have heard how great bully sticks are and now I see why. They are dog chews made out of bull. But they are very solid and tough and it took Sunny about two hours to work his way through it! He absolutely loved it and it tired him out!! I have never seen Sunny so preoccupied and busy for two hours. It was a treat he really had to work for, since he is a natural herding/working dog....this was perfect for him!