Saturday, April 22, 2017

Saturday, April 22, 2017

Tonight's picture was taken in May of 2006. Mattie was four years old and when I see this photo I can tell where we had just been. The balloon is the give away. Every time Mattie went to Harris Teeter (a grocery store), he would pick up a balloon and a sugar cookie (items offered to all kids shopping in the store). Mattie LOVED the fact that they didn't distribute cookies to kids with chocolate in it. Something he despised! As you can see Mattie guarded his balloon carefully and even when he got back home, the balloon was still attached to him. 




Quote of the day: The death of a baby is like a stone cast into the stillness of a quiet pool; the concentric ripples of despair sweep out in all directions, affecting many, many people. ~ John DeFrain

The next four days will be full of rain in Washington, DC. Not my favorite weather. But guess who doesn't mind it in the least? Sunny has his trusty raincoat and is like an all terrain vehicle. Nothing keeps him from a walk. 

Peter and I went to the Christmas Tree Shops in Waldorf, MD today. This is where we do some of our best Foundation raffle shopping. The store helps us with all sort of items to help pretty up the baskets and make them eye catching on the day of the Walk. I can't think of another store like it! It has everything and at wonderful prices. 

My friend Carolyn is our Raffle Chair. She has been helping us with the raffle from the year the Foundation held its first Walk, 2010. Carolyn purchases and donates many items to the raffle, which truly assists Peter and me. Carolyn and I also solicit companies for donations. So in essence the raffle is an event within a larger event. Any case here is my current raffle pile.

Believe it or not, I transform piles like above to eventually produce baskets like these. This was a previous year's baskets as I am still in the process of staging this year's! 

Friday, April 21, 2017

Friday, April 21, 2017

Tonight's picture was taken in May of 2006. Mattie and Peter went to buy a big boy bicycle with training wheels for Mattie. As you can see Mattie was excited and really didn't want to be posing for a photo. Instead he wanted Peter to be cracking open the box and assembling the bicycle. 


Quote of the day: I only miss you when I'm breathing. ~ Jason Derulo


About a year or so ago, I was talking to my friend Ilona at our Walk. Like me, Ilona's only child died from cancer. She comes to our Walk every year, and in fact, after we met in July of 2013, we have been text messaging each other daily. This July will be four years, believe it or not of writing to each other. 

Mattie Miracle's Walk is a fun event, but for myself and Ilona, it holds sadness. Mainly because we know that the event exists because our children do not. Being able to verbalize this with Ilona was important because it made me feel more comfortable about doing something about that feeling at the event. I have been very conditioned by our support community to shy away from depicting the reality of cancer at our Walk. Because it can be a daunting sight for young eyes in attendance. 

Last night, I talked to Peter about an idea I have wanted to execute on for two years. But just didn't. I didn't because I wasn't sure how it would be received at our event, since the majority of attendees are families who do not have personal experience with childhood cancer. Several years ago I did a Faces of Hope campaign, which featured the faces of childhood cancer survivors. These posters are at our event EVERY year, and attendees love them and even pose for pictures with them. So this year I am happy to report that we will be adding to these wonderful posters with a series we call.... Our Forever Heroes. Featuring the faces of children like Mattie who lost their cancer battle. These children are NOT to be forgotten, and I feel it is important for attendees to know that childhood cancer is serious and the medicine doesn't cut it for many of our children. 

Peter sent out the message below on Facebook today. Peter has over 3,000 friends on Facebook, so I knew his message would be seen. The response we are getting to the request below has been incredible! We have about 40 names so far! Parents are grateful, thankful, and pleased that someone is taking an interest in their child and that there is an event in which their child can be featured. I am very happy by this response, a response which I somewhat predicted as I know how I feel about Mattie. Anytime someone asks about him, or wants to recognize him in some way.... It's THRILLING!


PETER'S FACEBOOK POST.....................................

To all my childhood cancer friends and their friends and to anyone who has lost a child, I have a special and delicate request to make of you for our Forever Heroes Campaign:
As you may know, our foundation, the Mattie Miracle Cancer Foundation, has an annual awareness walk and festival each year. One of the primary objectives of this event is to build awareness in the general public about childhood cancer, and that on average, 1 in 5 children dies from these diseases, like our son Mattie.
We do not want our children to go forgotten, so we would like to make up posters of as many children as we can who have passed away from these awful diseases. We would only use them for the Forever Heroes campaign and treat them only with the utmost respect.
If you are willing and open to sharing your child with us, then please send me a PM or email me at pbrown@mattiemiracle.com with the following:

1. Name of your child
2. Diagnosis
3. Age at which they passed away
4. Five words to describe them
5. A picture of your child

Again, I know this is a very sensitive and private this to request. Having lost my own child, I understand that some may be comfortable doing so and some may not. Please know we only intend to help spread the word that 80% survival is just not good enough, especially for our children who have died from the disease. Thank you for your consideration of this.
Peter

Thursday, April 20, 2017

Thursday, April 20, 2017

Tonight's picture was taken in May of 2006. Mattie was four years old and we were transitioning him from his crib to a bed. Mattie was very excited by this change, especially since his friends in preschool were all talking about their beds. I wasn't eager to move Mattie from a crib too fast, since he had sleep issues for the first year of his life and I felt the crib was safer and more secure for him. But I could see his crib mattress was falling apart and he was ready to graduate to the independence of a twin bed. As you can see, the change put a big smile on Mattie's face!




Quote of the day: When I hear somebody sigh, ‘Life is hard,’ I am always tempted to ask, ‘Compared to what?’ ~ Sydney Harris


At this time of year, I am juggling ten things at once. Peter took Sunny to work today because our deck was getting painted and it would be hard to get Sunny outside the front door. Thankfully Peter took Sunny because I was managing painters, processing Walk donations, answering Walk questions, completing permitting paperwork for the City of Alexandria for the Walk, and also working on the Foundation's monthly newsletter. When I say I did not move from the computer today, I am NOT kidding.


Peter called me from work today in a total panic. That is usually my MO, NOT Peter's. He wanted me to know that our escape artist of a dog was at it again. Peter was walking Sunny at lunch time. There is a victory garden near where Peter works and Sunny likes to walk in that direction. Well in the garden today was a BUNNY. If I thought Sunny liked squirrels, then I would say he is enamored with bunnies. Peter said Sunny bolted to catch the bunny. That wasn't when he escaped because Peter held the leash the whole time. But as Sunny was running around and twisting and turning to get the bunny, he worked his way out of his harness (which I assure you is a feat!) and then was free flying after the bunny. I can only imagine Peter's reaction, as I would have been screaming at Sunny. However, unlike Sunny's run away attempts when left with friends, Sunny did eventually come back to Peter and by that point knew he did something wrong. 

I think Sunny's calm and compliant disposition gives people a false sense of security. I know that was true with our friends. But he is fast, strong, and is usually on a mission when walking. There are no leisurely strolls with Sunny. He is all about sniffing, observing, and if he could.... capturing. At times I feel bad that I haven't found an in-home solution to board him when we go away, but I am glad I have stuck with my gut feeling about this. He needs a facility and walls to keep him safe and secure if we are not around. 

Wednesday, April 19, 2017

Wednesday, April 19, 2017

Tonight's picture was taken in May of 2005. We took Mattie to the DC Aquatic Gardens and while walking we paused on a bench. As you can see Peter captured that moment in time. Look at the energy Mattie had.... limbs moving, but always with a beautiful smile!



Quote of the day: Children are a burden to a mother, but not the way a heavy box is to a mule. Our children weigh hard on my heart, and thinking about them growing up honest and healthy, or just living to grow up at all, makes a load in my chest that is bigger than the safe at the bank,and more valuable to me than all the gold inside it. ~ Nancy E. Turner


Tonight's quote caught my attention, especially the line.... "or just living to grow up at all." Beautifully put! I really think when you lose a child to cancer, particularly an only child, there are long term ramifications. Some are obvious and others more subtle. Losing Mattie showed me that NOT every child has the luxury of growing up, or going to school, or simply..... to AGE. I constantly hear adults complaining that they are aging, or kids complaining that they have to go to school. Both of these things will never happen for Mattie. He wasn't allowed to age and he only completed kindergarten. It is hard to fathom that his friends are now in high school. Mattie was robbed of lower, middle, and now high school. His loss puts a lot of things into context for me. 

My context isn't always pleasant to live with, and in fact it can be morbid. For example, when I see pregnant women now, most people think happy thoughts and are excited for the mom to be. Not me, my first instinct (which I naturally don't share) is.... your child could be diagnosed with cancer, or worse your child could die from this diagnosis. To me nothing in life is guaranteed and with that I prefer living in the present moment. I don't like looking ahead nor planning ahead. I don't even like planning fun things like vacations into the future. To me the future is nebulous and yet the world around me insists on me being future oriented. I constantly feel the pressure to make future decisions from others in my life, and at times I can do it, and at other times, I leave it to Peter. Fortunately Peter and I, both permanently impacted, but have been affected in different ways. I figure between the two of us, we function as one person. 

I was listening to the radio today and I heard an ad for 529 plans, so parents can save money for their children's education. It was the wording of the ad that set me off, because again it was very future oriented. Naturally parents do need to plan accordingly for their children, but I don't think people understand the ramifications of such ads on parents who lost a child. The ad left me upset and I carried that feeling with me throughout the day. I'm sure by tomorrow, I will rationalize my feelings and reconcile that the ad has merit and purpose. But I am NOT there yet!

Tuesday, April 18, 2017

Tuesday, April 18, 2017 -- Mattie died 396 weeks ago today. 

Tonight's picture was taken in March of 2005. It is one of my favorite photos I took of Mattie and Peter together. They were in the living room playing with Mattie's plastic food. Peter decided to do a bug face and as you can see Mattie joined right along!!


Quote of the day: There are no bad pictures; that's just how your face looks sometimes. ~ Abraham Lincoln

I got news for President Lincoln..... sometimes the photographer takes BAD photos. I had to get passport photos done today to renew my passport, so I went to CVS. It was an absolutely hysterical scene. The woman I was working with was lovely. She took four different photos. Mainly because I think she was as perplexed as I was with the nightmare results. The lighting was bad, everything is blurry and I left thinking to myself.... if this is really how bad I look, then we have a problem. 

I know in the grand scheme of things and the with our world and the people around us in chaos/killing one another, this photo is not a problem! 


As the Foundation Walk approaches, the details and endless chores compound themselves. I have very little patience with anything else in the months of April and May, until I feel that Mattie Miracle will make its financial goal. It is a lot of stress because besides doing the Foundation work, I also have to raise the money. 

Now I say that, but starting next week, I will do my first art lesson at Mattie's school. This is the seventh year in a row that I have visited the school and worked with a kindergarten class on Matisse and Picasso. These children are the age at which I remember Mattie. Though Mattie would be 15 years old now and in high school, to me he will always be a kindergartner. I have no experience teaching this grade level, but I have the practical experience of raising Mattie, which does guide every lesson I do. Today however, I learned that one of the children in the class lost a mom to cancer. It is a tragic loss for this child and family, and I hear the school is stunned once again. I find cancer of all kinds tragic and even more disheartening that scientists have yet to cure this disease, and in the world of childhood cancer, I can say they have made very little progress in 20 years. Yet what I can say with certainty is this family will be forever scarred and I do believe lives are altered when an important piece of the family dies.   

Monday, April 17, 2017

Monday, April 17, 2017

Tonight's picture was taken in March of 2005. Around Easter time, we always took Mattie to Bunnyland at Butler's Orchard. They had an Easter egg hunt, tractor rides, jumping in hay, and as you can see Mattie hopped on a "john deere" like toy and started peddling. It was a great event for kids. We visited Butler's Orchard every fall and spring for their special holiday events.


Quote of the day: If a dog will not come to you after having looked you in the face, you should go home and examine your conscience. ~ Woodrow Wilson

It wasn't a boring day with Sunny today. We walked about 7 miles together and on each of our walks, something different happened. In the morning, as we were walking by the river front, a two year old girl was walking with her mom and grandmother. The mom asked me whether the little girl could pet Sunny. I said, "of course, he is very friendly!" Sally (the little girl) fell in love with Sunny. She was petting him and giving him big hugs. The grandmother was snapping photos! You should have seen Sunny, he was just standing there, very calm and didn't move. He is truly a very smart and sensitive fellow, who knows when it is important to stand still and behave. 

But there is another side of Sunny. Sunny LOVES to look for and chase squirrels. That I knew. In fact his foster mom told me about his propensity to chase squirrels and rats. I TOTALLY appreciated that head's up, because I only had one dog growing up and she had NO interest in squirrels or things that moved on the ground. Sunny is strong and if I don't hold the leash the right way, I literally go flying when he is in chase mode. Usually I can prepare for his leaping, because I typically see the squirrels before he does. But not this afternoon. This afternoon, Sunny went into full chase mode and was successful. He captured a squirrel in his mouth. I was stunned but let out with a howl, and I am not sure who was more dazed.... Sunny or the squirrel. Needless to say, my sound startled Sunny long enough for the squirrel to land on the ground and run up a tree. So one squirrel's life has been spared!!! 

Sunday, April 16, 2017

Sunday, April 16, 2017

Tonight's picture is a collage created by our Facebook friend, Timothy Beck. Tim creates these beautiful pictorial memories for many families who lost a child to cancer. He does this on his own and doesn't want to be compensated in any way. Tim surprised us with this wonderful composition that features Mattie throughout the years at Easter time. 





Quote of the day: I think we need to do some deep soul searching about what's important in our lives and renew our spirit and our spiritual thinking, whether it's through faith-based religion or just through loving nature or helping your fellow man. ~ Louie Schwartzberg

I took this photo of Mattie in May of 2006. Timothy Beck added the bunny face and bunny ears (within the photo Mattie was holding) for Easter. 

The context of this photo I took, was that Mattie grabbed the photo I had of him on our refrigerator that featured him as a toddler in front of our coffee table (the picture he was holding). In 2006, when I snapped this photo, Mattie was a preschooler and towered over the coffee table. Mattie held up the photo as a comparison to show everyone how he had grown!  

Isn't this a glorious sight?! Peter took this photo on his morning walk with Sunny!!!

Meanwhile this afternoon, Peter and I removed everything from the floor of our deck, since it will be getting painted tomorrow. Now everything that was outside is sitting in our dining room!

I am quite sure Sunny and Indie are confused by all our activity. Nonetheless, from Mattie's bedroom, I looked down onto the deck, and both Sunny and Indie were out there together catching the breezes!

Indie LOVES deck time. She prefers being outside much more than Sunny. If we could leave her outside on the deck all day, she would love it! This was the sight I saw from Mattie's window.

Our friend Ann, invited Peter and me out to brunch today. We even got to meet her cousin who is an undergraduate at the George Washington University. Peter and I walked home from the restaurant and then took a walk by the water with Sunny. 

Having Sunny and Indie do help, especially on a day like today. A day in which Mattie should be with us, but of course isn't.