Saturday, March 26, 2016

Saturday, March 26, 2016

Tonight's picture was taken on March 22, 2009. Mattie was home between chemotherapy treatments and wanted to spend some time outside. He LOVED his frog shaped sandbox. Despite it being chilly out, we bundled Mattie up and Peter ran a portable heater outside so that Mattie wouldn't catch a cold. Mattie enjoyed his time in the sand.... he loved building, creating, and running his match box cars through the sand. The sandbox is still a part of our lives. It sits outside our deck in the common space. Kids in our complex come visit this box often, and of course most of Mattie's toys are still in there.


Quote of the day: The first day of spring is one thing, and the first spring day is another. The difference between them is sometimes as great as a month. ~ Henry Van Dyke

Given that today was a spring like day in temperatures, and there is NO rain in the forecast for the weekend, we decided to use this opportunity to clean our deck, begin scraping the paint off of it and to repaint it. This is a HUGE undertaking, which will take all weekend.

This is the before photo I took this morning before we started working. It is hard to tell from this photo (taken from Mattie's bedroom), but the paint did not make it through the Fall and Winter. 

In August and September of 2015, our deck looked like this. It was OUT of our control. The government building next to us, actually owns this brick wall. So they can do whatever they want with it. They chose to start a project in the summer to repoint all the bricks and then power wash them. I can't tell you what a torture this was, and working from home, I thought I was going to LOSE it! I had this nonsense going on for SIX WEEKS! Our deck was a disastrous mess by the time they finished. The scaffolding actually was a great weight on the wood and there are several parts of our deck that are now weaker. But what truly suffered was the wooden ramp Peter built for Mattie's wheelchair in the Fall of 2008. We have had that ramp attached to our deck for eight years. It would have made it another 8 years if the scaffolding hadn't taken over. 

Today, we had to face it... the ramp had to be disassembled. This might not sound like a big deal but it is, it is another part of our lives with Mattie that has been removed. 

I snapped this photo this afternoon. The old deck is that V-shaped structure propped up against the bricks. We contemplated building a new ramp (which is why you see new wood), but in all reality we just did not have the heart to do it. So we are returning to the way things used to look like before 2008. 

Peter and I worked about six hours today on the deck. All my planting bays needed to be cleaned out and we began planting basil and tomatoes. At the end of the day, most of the planting bays were cleaned out and their perimeter walls were painted. Peter worked hard on scraping the paint off the deck. So the after photo for today, looks actually worse than how the deck started out. 

On top of the walls, we tend to plant many perennials. It is always wonderful to see which ones come back year after year. However, several of our plants died from the harsh winter we had, so this means starting back to square one with our perennial garden. 

Friday, March 25, 2016

Friday, March 25, 2016

Tonight's picture was taken on March 28, 2009. That weekend we took Mattie back to the hospital. NOT for treatment but to attend the opening of the child life art gallery. Mattie was proud to have his Lego story and model he created of an "ideal hospital room" on display. It was a special moment in time, where Mattie was surrounded by all his hospital buddies and for just a brief moment in time was having a good time. These are moments I remember always. In addition, the poster of Mattie's Lego story still hangs today in the hospital's gallery. 

This is a close up of the model on the table above!

In March 2009, I actually took several photographs of Mattie's very clever model. How did this come about? Linda, Mattie's child life specialist asked Mattie and I to write or create what an ideal hospital room and space looks like. Mattie's medium of choice was Legos. Mattie spent about a week designing this with me at our home. I did not do any of the building, but we talked about what he wanted and while talking, Mattie would tweak his model. 

Once the model was created, Mattie and I began playing with it! So it wasn't designed to just be looked at but to actively engage with it! Each of these Lego figures in the photo represented a character (Steve, Paul, Joe and of course engineer Mattie) in the hospital story we created. Each day we would add to the story and pick up where we left off. 

This is the poster that exists in the Hospital gallery. Linda captured Mattie's story and framed it. I never knew that this poster would remain intact and in existence for longer than Mattie.


Quote of the day: We do not remember days; we remember moments. ~ Cesare Pavese

It was another busy Foundation day. But in the midst of working, I took a break and organized all the toiletry and K-Cup donations that have been delivered to us for our April Item Drive. This is by far our most successful item drive to date! Behind all these items is actually a couch! We are very grateful to our supporters!

Thursday, March 24, 2016

Thursday, March 24, 2016

Tonight's picture was taken on March 22, 2009. We took Mattie for a walk while home between treatment cycles. A walk was a relative term since after Mattie's second limb salvaging surgery he never walked again. However, Mattie loved being outdoors and we took him and his wheelchair everywhere. That weekend we walked down to the National Mall to see the cherry trees and in typical Mattie fashion he found a stick along the way to bring home to add to his stick supply in our commons area. 


Quote of the day: Motherhood, all love begins and ends there. ~ Robert Browning

As some of my faithful readers know, on February 12, I captured an injured dove who had been sitting on our door step for two days. I named her Lovie the Dove! Lovie gave me a run for my money as I tried to grab her with a towel and put her in a box. Injured and all she put up an excellent fight. But it was persistence and wearing her out that eventually did her in. Before capturing her I had to know what to do with her. Fortunately I located a wonderful shelter that rehabilitates wildlife in the District of Columbia called City Wild Life. 

Yesterday I received this follow up post card in the mail. I was thrilled to see that Lovie was released back to the wild on February 26, two weeks after I brought her in! I know the organization told me they try to release the bird back to where it was found injured. So for all I know Lovie is flying about our garden space! We have many doves that visit us daily, so I would like to think one of them is Lovie. 

Wednesday, March 23, 2016

Wednesday, March 23, 2016

Tonight's picture was taken on April 12, 2009. Mattie was in the hospital over Easter and his buddies, Louise and Meredith came to visit him. They hosted an Easter Egg hunt for Mattie in the hallway of the in-patient unit. Of course Mattie was in a wheelchair, but they wheeled him around and made it festive and fun for him. They knew Mattie did not like chocolate, so they stuffed the eggs with fun treats like play money and jelly beans. They brought a smile to all of us that day! These diversions are so crucial when in a hospital full time. 


Quote of the day: We worry about what a child will become tomorrow, yet we forget that he is someone today. ~ Stacia Tauscher

Today I went to Georgetown University Hospital, because the Charity Through Medicine Club at Bishop Ireton High School in Alexandria, VA was hosting their annual Easter Egg Hunt with Mattie Miracle. The Club purchases all the supplies, stuffs 800 colorful eggs, and helps host the event at the hospital.

From my own experiences, I know more social activities need to be provided to in-patient children. So the Easter Egg Hunt is always held in the in-patient pediatric units. These three high school seniors (Sarah, Isabel, and Margaret) did a fabulous job today!

This brother and sister duo had a great time together and collected a ton of eggs. It was a joy to watch the children get a little bit of happiness outside of their hospital rooms. 

Several of the children were in wheelchairs, but that did not stop the high school seniors. They pushed wheelchairs and helped the children collect eggs. This particular patient was THRILLED to be out of her room. In fact, I heard she was waiting all day today for the fun to begin. I can literally say that this event was the highlight of her day. 

We had a couple of fellows who were great egg finders!!! 

Sarah was pushing another patient in a wheelchair. You could tell he wasn't having the best of days. I remember those moments all too well. But I give him a lot of credit for coming out of his room and trying to engage in the hunt. 

Looking for eggs everywhere! The girls put the eggs all over and we made sure all the children 
had plenty of eggs to collect. 

After the hunt was over, all the children received a Georgetown Cupcake! I remember these treats so well, as Mattie and I used to love when Georgetown Cupcake came to the hospital! It has a way of making a bad day a little better. 

Tuesday, March 22, 2016

Tuesday, March 22, 2016 -- Mattie died 340 weeks ago today.

Tonight's picture was taken in March of 2009. This was one UNHAPPY bunny. Mattie was home between treatments and received a care package from a friend with these bunny ears. As Mattie's cancer journey continued, his happiness decreased and his level of depression rose. In fact it became harder and harder for find activities that brought joy to Mattie's life. Receiving the bunny ears, though well intentioned, reminded Mattie that his life was different from his friends and he wasn't able to run around at Easter time to collect eggs.



Quote of the day: Mourning is the constant re-awakening that things are now different. ~ Stephanie Ericsson

This weekend, we visited Mattie's memorial tree at his school. In the Fall, Peter and I planted bulbs around the tree. As you can see the daffodils, crocus, and tulips were starting to sprout and bloom!

I removed the Christmas bow around the tree and in its place put this huge yellow butterfly. This butterfly is in memory of Mattie, as April 4th would have been Mattie's 14th birthday. The butterfly is my symbol of Mattie and though the average person passing this tree at his school will think that the butterfly is a pretty spring time decoration, it actually means much more to us than that! 

In addition to the butterfly and bow, we added some of Mattie's favorites....bugs and birds! Very colorful ornaments that really capture your attention as soon as you approach the tree. 

While on our home front, our Amaryllis is blooming! Things have a way of springing into action around the time of Mattie's birthday. Which was why I ALWAYS joked with Mattie that the azaleas at the U.S. Arboretum came out in April to acknowledge his birthday! Their azaleas are unforgettable because there are so many that cover the hills and pathways. It was a spring time tradition we always did together. 

Monday, March 21, 2016

Monday, March 21, 2016

Tonight's picture was taken on March 10, 2009. Mattie had low white blood cell counts, as a side effect of chemotherapy. Which was why he entered the child life playroom with a mask on, to protect himself from germs. But any time Mattie wanted to get out of his hospital room and interact with the outside world, I welcomed it. Frankly I never feared he would catch an infection (though that was a distinct possibility), mainly because his quality of life was always high on my radar scope. As Mattie's treatment went on, he became more and more closed off to people, and preferred isolation. Yet on science days, Mattie always perked up. He loved experimentation, getting messy, and learning about how things worked..... as this photo clearly depicted. 


Quote of the day: We keep moving forward, opening new doors, and doing new things, because we're curious and curiosity keeps leading us down new paths. Walt Disney


As we are preparing for Mattie Miracle's upcoming Walk, I always seek feedback from our Walk committee on ideas. Especially ideas to promote the Walk and give it more visibility. I have found whether I like it or not, I have to really use social media to get the word out, and be creative in how you deliver this message multiple times!!! So the idea was presented to me that we needed a Twibbon for Facebook. To be perfectly honest, I had NO IDEA what a Twibbon even was. So that meant I had to do some research and pull Peter into this process. Peter is far more technologically savvy than me, and if something needs to be figured out, he is tech support for the Foundation. Together with his technological skills and my creative skills we are an interesting package. 

So what is a twibbon (for those just like me)? It is basically a visual marketing and promotional campaign for Facebook and Twitter. Sounds good right? A way to market the Walk for free? Well naturally NOTHING is simple. To design a twibbon was HELL. If you look at the Facebook photos below you will see a commonality. They all have an orange ribbon border with our walk logo on it. Well that is a twibbon (like a campaign ribbon, that is added to a pre-existing photo). So we basically had to create the template, pay for it so that others could upload it to their facebook sites! It literally took us two days to learn the technology to create a twibbon, to then create it to fit the right dimensions of a Facebook profile photo, and then had to learn how to distribute the twibbon and help people upload the photo to their site (because even that part isn't intuitive)!!! 

As of today, here are all our supporters who have changed over their Facebook profile photo to our twibbon! We are encouraging others to........ 

Join our Twibbon Campaign and help us spread awareness about our upcoming Walk & Family Festival on May 15th in Alexandria, VA. 

We also want people to know that you don't have to live in our area to participate in the Walk! We added a new option at registration... a virtual walker so you can help us raise funds to meet the psychosocial needs of children with cancer and their families anywhere in the Country!

The photos above belong to:

First row (left to right): Peter Brown, Ann Henshaw, Margy Jost, Peggy Elkind, Tina Lytle
Second row (left to right): Maria Santagada Smith, Mattie Miracle, Mary Rivera, Dawnee Giammittorio, Ali Sharkey
Third row (left to right): Barbara Anderson, Cathy Abid, Brian Sweet, Nancy Sweet, Janice Cohen
Fourth row (left to right): Sara Pula, Mary Doane, Ashley Johnson, Toni Johnson, Chris Gauris
Fifth row (left to right): Vicki, Tamra Bentson, Jane Pisano, Mike Doane, Cassandra Hostetler


To add our Twibbon to your Facebook page, go to:

http://twibbon.com/support/mattie-miracle-walk

Sunday, March 20, 2016

Sunday, March 20, 2016

Tonight's picture was taken in November of 2008. Mattie was home for two weeks recovering from his second limb salvaging surgery, before he could resume chemotherapy. The recovery was hellish and this was around the same time where Mattie's medical traumatic stress symptoms presented themselves. What I love about this photo was Patches. Patches was devoted to her family and to Mattie. She popped right up on his hospital bed in our living room and was there to provide support. She did not get the name, Nurse Patches for no reason. 

I remember when I was in graduate school, I became very sick, with an 104 fever. I was so out of it, delirious and weak. Peter was at work and I literally couldn't move or do anything. Patches sensed this and jumped on my bed and stayed with me the entire time until Peter got home. It was from that horrible illness that I always referred to Patches as my Nurse Patch!

Quote of the day: No amount of time can erase the memory of a good cat, and no amount of masking tape can ever totally remove his fur from your couch. ~ Leo Dworken 

Today marks the third anniversary of our beloved Patches, who died in 2013. Patches was an abandoned cat on the streets of DC. She found us and was in BAD shape when she came to our doorstep.... with a leg shot by a BB gun.

These photos tell the story of our 17 year journey with Patches! She was an integral part of our family and deeply cared for Mattie. She put up with Mattie's crying at all hours of the day and night as a baby and his tail pulling and chasing around our home when he was a toddler. But over time they became fierce supporters of one another. After Mattie died, Patches was depressed and would sit for hours on Mattie's bed, staring out the window.... waiting for him to come home! She is a cat never to be forgotten!

This photo was taken 23 days after Mattie was born! Peter was holding Mattie and look who was overseeing the process on the arm of the couch..... PATCHES. Patches was never far from us and always wanted to be a part of the mix when her family was concerned. 

This was another priceless photo. Peter came home from work one evening and he could see Mattie was intrigued by Patches. So he helped them to have a meeting of the hearts and minds! I just love how Patches and Mattie were looking at each other, not to mention how Peter was overseeing all of this. 

It was hard to assess who liked Christmas presents more... Mattie or Patches. They both love hanging around packing boxes and getting to see what was inside!

This photo was taken after Mattie died. When Mattie was alive, Patches rarely spent time in Mattie's room. Mainly because he was active and always moving around and she preferred more space and quiet surroundings. However, after Mattie died, Patches became depressed. She spent many hours, for many weeks sitting on Mattie's bed, staring out the window. As if she was waiting for him to come home. 

Peter and Patches had a very close bond, which was why I always joked with Peter and said Patches was his "girlfriend."

I remember snapping this photo, and I particularly love the pink roses in the photo. The roses were for me, but Patches was intrigued by them, so Peter picked her up to look and smell them.