Saturday, March 18, 2017

Saturday, March 18, 2017

In December of 2006, we took Mattie to Butterfly World in Florida. It is truly an amazing, tranquil, and memorable place to visit. It appeals to all the senses. I can never see enough of these beautiful and fluttering creatures. Every time we visit Florida, we go to Butterfly World. It connects us to Mattie and to many butterflies, which also remind me of Mattie. 


Quote of the day: Life is short. If you doubt me, ask a butterfly. Their average life span is a mere five to fourteen days. ~ Ellen DeGeneres

As tonight's quote points out, a butterfly's life is short, yet beautiful. This maybe one of the many reasons why I think of Mattie each time I see a butterfly!

Peter and I visited Mattie's memorial tree at his school today. We wanted to change the ribbon and bow around the tree and add a few ornaments. All in memory of Mattie's 15th birthday which is fast approaching. The metal butterfly ornaments we added to the tree today, were purchased at Butterfly World in Florida. This seemed appropriate given how much Mattie loved visiting this preserve. 

This is Mattie's yellowwood tree. Soon trees and flowers will be springing from the tree. 

Can you see the big butterfly ornaments we added to the tree? They are made out of metal and enamel and are truly colorful and special like a butterfly. 

Our daffodils that we planted come back every year, along with crocus and tulips! I changed the bow and ribbon around the tree. Took down the winter themed bow and put something springy in orange. 

Butterflies blowing and floating from the tree in the wind. In addition to the butterflies, there are legos, toy cars, hearts, a bird house, and chimes hanging on the tree. 

Later this afternoon, we took Sunny outside in our commons area off leash. He LOVED it. I captured Sunny and Peter playing hide and seek!

Love the tail batting around with excitement! 

Sunny checking out the squirrels from our commons area balcony. 

Friday, March 17, 2017

Friday, March 17, 2017



Tonight's picture was taken in March of 2009, on St. Patrick's Day. One of Mattie's friends gave him the glasses, headband and necklace. So Mattie was decked out for the day, ready to visit the cancer clinic for treatment. I still have the headband and glasses, in fact if you look in the cabinet photo below, you maybe able to see them displayed in Mattie's memory shelves. 








Quote of the day: Our anxiety does not empty tomorrow of its sorrows, but only empties today of its strengths. ~ Charles Haddon Spurgeon

Every year around Mattie's birthday, Peter and I leave town. Leaving town becomes more complicated when you have animals. Fortunately for us, Indie is easy going and loves staying at our vet. She loves them, and they love her. So I don't worry about her. Sunny is a whole other story. 

Sunny is a VERY sensitive creature. He has bonded with me and frankly I can pick up when he is anxious. The place I take Sunny for grooming, is a lot like Dogtopia (where Sunny was today). However, when Sunny enters the facility where he is groomed, it is visibly noticeable that Sunny is anxious, because he shakes with fear. He doesn't react that way to Dogtopia, but he isn't exactly calm there either. This is Sunny's second time at the facility. I am trying to get him used to it before moving to a full week of boarding. Notice where Sunny is in this photo. At the 9 o'clock position, which puts him in front of the door to the room. Meaning he wants out!!! The beauty of this facility is that there are webcams and I can assess how Sunny is doing for myself. 

Peter was also watching Sunny through the Webcam at work and noticed that Sunny gravitated to the man at the 6 o'clock position. That is the owner of Dogtopia. Everyone who works at Dogtopia however is friendly, dog centered, and wants to make the experience positive for each dog. 

When I picked up Sunny this afternoon, the staff agreed with me that he is anxious. Which was a better response, since the grooming facility believes it is me who is making Sunny anxious. Which isn't true, I am getting anxious from his reaction. As Dogtopia said to me today..... Sunny wasn't around me all day, and the anxiety is coming from him. Since I wasn't present for him to feed off of.

Sunny refused snacks today at daycare and spends most of the time by the door. So I will be bringing him back next week for more visits, so he understands that being there is temporary. I even spoke to the general manager today. She asked how long I had Sunny and where I got him. Once she learned he was a rescue, she felt that being in a room with other dogs may remind him of being in a shelter, which could trigger his anxiety. So I am not sure what to do with Sunny. I can't imagine boarding him at a kennel, where he is locked up in a cage for a majority of the day being a positive experience for him either. 

Take a look at the toiletries coming in from all over the USA. All these items will stock our free snack/item carts at local hospitals. It is wonderful to see this pile and it my hope it will double by April! 

To see our WISH LIST, go to:

https://smile.amazon.com/gp/registry/wishlist/2UQOK4GY955ZL/ref=cm_wl_list_o_1?

Thursday, March 16, 2017

Thursday, March 16, 2017

Tonight's picture was taken in April of 2009. At his birthday party, which was in the child life playroom of the hospital. Take a look at the birthday card he received from his art therapists! They knew Mattie LOVED roaches, or at least loved the fact that the notion made me sick. I am not sure Mattie ever saw a live roach. Any case, to me this photo is priceless! Look how proud he was to receive this card!


Quote of the day: But remember, boy, that a kind act can sometimes be as powerful as a sword. ~ Rick Riordan

Today I drove to Baltimore, MD with my friend Margy. It was a DAY LONG adventure to visit Children's Hospital at Sinai. In reality the hospital is about 50 miles away, but with DC traffic, things always take longer. To put this in context, it took us about two hours to drive home.

Mattie Miracle launched its second snack and item cart today. Our first cart is at MedStar Georgetown University Hospital and now our second cart is in Maryland. 
Pictured here are Kristen (Child Life Specialist), Dr. Aziza Shad (Chief of Pediatrics), me, Laura (Child Life Coordinator), and Kelly (Child Life Specialist)


When Mattie was dying, Dr. Shad was the attending physician on call at MedStar Georgetown. Even though she wasn't Mattie's oncologist, Peter and I had many opportunities to interact with Aziza and of course I think you learn a lot about a person over the death of your child. Dr. Shad had to make a tough call about Mattie's death. His body was dying but his will did not want to die. Mattie was in agonizing pain and his room and bed looked like a war zone filled with syringes of pain meds. These syringes were given on top of the ones he was already getting through steady IV. Needless to say, Mattie had to be placed into a coma with propofol to die. It is a moment in time I will never forget, regardless of the number of years that go by. 

When Dr. Shad moved from MedStar Georgetown to Sinai Hospital, we decided to continue our support of our work. So we started by donating a snack/item cart. 

The cart was a huge hit today. The hospital gave us permission to post several photos of children we met along our journey today. Typically I do not like to feature children on our blog or website, because I am sensitive to their illness and do not want to highlight our accomplishments by exploiting a child's hardship and struggles.

I have made an exception to my rule today, because I could try to tell you there were smiles and happiness over the cart, but sometimes a picture says it all!

This fellow was priceless! As were all the children we met today. This cutie is five, and managed to deal with all of us transcending onto the clinic and hovering around. He was coloring in a Shamrock for St. Patrick's day and he and his mom were thrilled to get some items from the cart. 

I am not sure why meeting all the children and teens today impacted me so. As Margy said.... we met many 7 year olds today. The age Mattie was at when he died. Her comment resonated with me because it is hard not to see Mattie in these little ones.  

Julien was wearing a hat that said... cancer can't beat me. I think what struck me about the children I met today was their incredible strength, courage, and overall positive 'can do' attitude. Which truly is remarkable. 

So many of their faces remain with me tonight, because the child life staff brought us into every room and gave us an opportunity to talk with the children and parents. We weren't only delivering treats, but connecting with people. Which is what I love best. 

After visiting the outpatient clinic, we went to visit the inpatient pediatric units. This hospital is designed beautifully, with every room and detail thought through to make a family comfortable. 

This is Daniel. He had just undergone a painful procedure. But when he came out to see the cart and receive a star balloon from us, his demeanor changed. It is wonderful to be able to personally see the difference a snack can make. 

This cutie is Graham. He was also unforgettable. You can see in the lower left hand corner of his bed all the goodies he picked out for himself and his parents. He has the sweetest smile and I asked him if I could capture it!

After touring the outpatient clinic, the inpatient units, and the pediatric ER, Margy and I went to lunch with Dr. Shad. 

Margy and I in front of the sea creature sculpture as you enter the children's hospital!

Wednesday, March 15, 2017

Wednesday, March 15, 2017

Tonight's picture was taken in April of 2009. You maybe asking yourself..... what am I looking at? Well this was Mattie's right leg in a cast. Though Mattie had limb salvaging surgery on this leg in October, Mattie was never able to truly walk, stand, or straighten this leg. The leg seemed permanently bent at the knee. Part of the issue was Mattie wasn't able to do physical therapy post surgery to return to having a functioning leg. Because of his chemotherapy treatments, constantly feeling weak, and not being able to use crutches (since he had limb salvaging surgeries on each of his arms), there was never a time to rehabilitate the leg. Therefore it became bent. The goal of casting the leg was to straighten it back out. Unfortunately that never worked. But as you can see both Peter and I decorated Mattie's cast. Peter did the 'I love you' at the top and I did the 'U R my sunshine' at the bottom. 


Quote of the day: Treat everyone with politeness and kindness, not because they are nice, but because you are. ~ Roy T. Bennett


Today took winter to a whole other level. It was beyond frigid out and the wind made things ten time worse. It was the kind of day you don't want to be outside! Yet with Sunny the border collie that is not an option. I don't know how we walked four miles in this weather, but we did it. Sunny refuses to do his business in the snow, so finding the right location for him is important and that is quite a mission in the cold! Meanwhile in addition to my usual fibromyalgia pains, I have a new one that is radiating down into my foot. It is painful to wear shoes and to walk. I do it and push myself, but wow! 

I am proud to report that this year's Walk Website is up and operational. We have never had the website functioning two months before our event. Last year we switched platforms that hosted the Walk site. There was a VERY steep learning curve last year, but thankfully it made it much easier to reset the site this year and just update it.  This was a good investment, because typically at this time of year I am panicking about having to create a walk website. Now that the template for the site has been created once, it can then be used year after year. Just beautiful!!! If you want to see the website, go to: www.mmcfwalk.com

As a reminder, after Walk 2016 was over, we created this video on the event. It was a great Walk and we are planning for even greater things this year. Check out our video:
https://www.youtube.com/watch?v=j88w-0NZZ2E&feature=youtu.be

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.