Saturday, June 25, 2016

Saturday, June 25, 2016

Tonight's picture was taken in July of 2007. This was what our deck used to look like. You can see the big inflatable swimming pool in the left hand corner of the photo and if you look closely you can even see Patches, our calico cat, in the lower right hand corner, sitting on Mattie's green frog sandbox! Literally the whole family loved spending time outside in the summer time!!! 


Quote of the day: Flowers have the greatest talent in converting an ordinary place into a magical palace! ~  Mehmet Murat ildan

There is a lot to be said about today's quote! Of which I TOTALLY agree with it! Flowers can transform just about any place. I think they can also uplift your spirits! These glorious lilies, we call our "Father's Day lilies." Why? Because they always bloom around Father's Day! The funny thing about these lilies is we bought them over 20 years ago! At Home Depot, believe it or not! We do not take the flower boxes that they are plant in inside over the winter. Yet these bulbs produce EVERY June without fail!!!

Of course back when we first got the lilies, Peter was not a father yet! So when we would see these lilies bloom we would think of our dads. Once we had Mattie in our lives, the lilies took on a whole new personal meaning to us. 

The flower pots you see sitting on the deck are our beans which we have been growing from seed! They are truly climbing and growing. 

This is our herb garden. Naturally we live in the city and have NO land, but just give us a flower pot and we can plant just about anything. 

Our glorious basil! This is my favorite time of year because I literally can cook with fresh herbs from our garden. 

Mattie's fountains bring us lots of peace and tranquility in the summer months. I am SO GLAD Mattie insisted on making fountains with Peter for my birthday in 2008. The fountains get cleaned out EVERY Mother's Day and restarted for the spring/summer months. 

I am a BIG petunia fan! Peter tolerates them. I don't think he cares for the fact that you have to be diligent about shaping them and dead heading them! Otherwise they look like a mess and get stringy! I don't mind doing it in the summer, I actually find it therapeutic.  

A portion of our deck! Things are growing and thriving!

I bought sunflowers this week and I snapped a photo of them today. Sunflowers are one of my favorites. Sunflowers are happy flowers and you can't help but smile when you see one. 

When Mattie was battling cancer, our support community consistently gave me sunflowers anytime we were home between treatments. Sunflowers have come to symbolize for me.... love, compassion and community!

Friday, June 24, 2016

Friday, June 24, 2016

Tonight's picture was taken in July of 2003. This was Mattie's first trip to the beach, specifically the Outer Banks of North Carolina. Mattie did not know what to make out of the Atlantic Ocean and all the sand. He actually hated both and did not want to spend more than a few seconds on the beach. We spent that entire trip playing on the deck of the house. After many more subsequent summer trips to the beach, Mattie eventually did a 180 and fell in love with the sand and the fun of building and creating. 

I know you see a dolphin jumping out of the water here. Clearly that did not actually happen in our photo. This photo was digitally created by our Facebook friend, Tim Beck. He loved Mattie's face and expression here and therefore took the photo and transformed it. 


Quote of the day: A tormented mind wants to forget, what a broken heart will always remember. ~ Anthony Liccione


There are days I do not feel like writing and today is one of them. I am just tired and not in the mood to share my thoughts or feelings. However, instead, I will share with you several compositions that Tim Beck created for us in memory of Mattie. Keep in mind I do not give Tim these photos. He finds the ones that speak to him on the blog and then transforms them!

This was a photo taken around Peter's birthday in November of 2008. This was the last birthday Peter spent with Mattie. Mattie was in the hospital recovering from his second limb salvaging surgery. But despite the trauma and the pain of that, he wanted to celebrate the day with Peter. 

I love this composition. It features a fall day and a wooded path.... not unlike what we would have seen along the path of Roosevelt Island. The easel on the right has a photo of Mattie on it. I snapped this photo of Mattie during one of our winter walks on Roosevelt Island (Mattie was holding a crinkly hedge apple, which he found on the Island). The easel on the left illustrates a Mattie creation. Mattie loved canvases and could go through several in one hospital visit. This abstract painting that Mattie made still hangs in our dining room today. 

This was the first art therapy project we did together in the clinic after Mattie was diagnosed. His art therapists got to know Mattie quickly and realized he was a Scooby Doo fan! So they traced a Scooby scene on a ceiling tile, and we spent several weeks painting it in. This tile still hangs on the ceiling of the clinic. 

This photo was taken around Halloween of 2008. My parents and I took Mattie out to lunch. I remember this moment very well because Mattie was in the process of building a haunted house in the middle of the table. 

Mattie loved his walker, or as we referred to it... "tot wheels." Mattie never crawled. He wanted to move right to walking and running, which was the beauty of having the walker. Mattie loved the independence and zooming around inside and out. The cute story here is you maybe asking yourself WHAT WAS MATTIE STARING AT?! The answer is me! Peter was taking the photo, but Mattie was transfixed on me. Which was not unusual..... Mattie always tracked where I was. 

Peter's colleagues in Edmonton, Canada sent Mattie Oilers jerseys and a cap. Mattie put on all the items and we sent photos to them as thanks! The amount of items, toys, cards, etc that Mattie received while battling cancer was OVERWHELMING. In all reality, I needed a warehouse to manage the inflow, and I am not kidding. After Mattie died, our home looked like an episode of Hoarders. It took me years to dig out of this chaos. 

Mattie at Christmas 2007. Mattie loved decorating our Christmas Tree and he especially loved his battery powered toy train that encircled the tree! 

Mattie was in the hospital and had been working ALL afternoon on a clay excavation project. Mattie chipped away at clay for hours until he unearthed a toy dinosaur. You can see the dinosaur by his hand. Mattie was so tired, he put his head on his arm. I snapped a photo of him, the finished product, and that moment in time.

This is my favorite hospital photo of Mattie and I, taken on Valentine's Day by Mattie's art therapist. I was asked not to be in the child life playroom that day so Mattie could work on Valentine's creations for me. When I was invited back to the playroom, Mattie surprised me with many handmade gifts. Including the heart crown that I was wearing. 

Pre-cancer, Mattie would on occasion spend some time with former students of mine. They were my built in babysitters. On this particular occasion Emily took Mattie to her apartment and she took this photo of Mattie on one of her chairs. Tim transposed it onto a locket!

This photo always makes me laugh! Every spring Mattie would bring home tent moth caterpillars from school. The first year he did this, I found it creepy. But since he liked them so much, I figured we might as well learn something from the experience. So I helped Mattie get jars to house the caterpillars, we fed them (they can go through oak leaves voraciously), and cleaned the jar daily. Caterpillars have great threw put, I assure you. After about a week or so, they would then spin a cocoon and then we would wait for them to emerge as a moth. Once they were moths, we then had moth releasing parties on our deck

Thursday, June 23, 2016

Thursday, June 23, 2016


Tonight's picture was taken in May of 2008, on the last day of kindergarten. I had snapped a photo of Mattie on the first day of kindergarten (in September 2007) and I figured we needed a comparison photo. You can tell Mattie wasn't happy about having to stop for a photo on our deck before going to school. But he complied. We certainly thought we would have many more first and last days of school together! Little did we know!!!






Quote of the day: Travel is more than the seeing of sights; it is a change that goes on, deep and permanent, in the ideas of living. ~  Miriam Beard


I would say that the highlight of my day was returning home to find ALL the graffiti I have been reporting since September 2015 was gone!!! I can't tell you how excited this made me since I was having a very difficult time convincing the DC Department of Works that they were responsible for this property and NOT the State Department.

Frankly I did not care who was responsible for repairing this, I just wanted it done. I am all for creativity, but I do not deem this creative. But instead demoralizing and defacing of our Nation's Capital. In addition, it truly depressed me every time I saw it, which was often since it is very close to where we live! I reported this in September 2015 and then again in February 2016. Finally because I was persistent I received a phone call from the DC Department of Works. I explained the issue and explained my frustration. But nothing happened until I saw this sight today........................................

Honestly I have been so used to seeing this disgusting sight above, that at first when driving passed this wall, I was confused and disoriented. Then it hit me.... it did not look the same was because it was FINALLY cleaned. What this means to me is that persistence pays off, and never to under estimate how one person can make significant changes!!! 

Wednesday, June 22, 2016

Wednesday, June 22, 2016

Tonight's picture was taken in May of 2008. Literally two months before Mattie was diagnosed with cancer. We took Mattie out in a canoe on the Potomac River. This was something typically Peter did with Mattie. Peter was teaching Mattie how to fish! Of course they would catch the fish and release them, and to this day I really do not know how anything makes it in the River. It smells like a swampy mess closer to the city. However on that boating outing, I was invited along. Naturally boat or no boat I was snapping photos, and Mattie enjoyed showing me all that he was learning. But someone despite wearing a life vest, I still had a firm grip on Mattie as he was turning around for the photo. You can see the tip of my finger in this photo. It is interesting to me that it is the things that you don't plan on happening to your child, HAPPEN.  


Quote of the day: One’s destination is never a place, but a new way of seeing things.  ~ Henry Miller

Today we moderated a panel presentation at the Coalition for Childhood Cancer Research Conference. We were asked to coordinate this panel, which was important to do since this is the first time psychosocial care has had a seat at the table for this organization. Typically in the childhood cancer space, the focus is always on the biomedical care. Which of course is important, but when you think about the fact that psychosocial issues don't end when the medical treatment does, then it becomes evident that the discussion of care can't be compartmentalized. Lives (child and the family) are dramatically changed with a childhood cancer diagnosis, and it is important to break down the walls that hold onto this stigma. 

We were very pleased that the panel was compromised of diverse psychosocial professionals which is reflective of how actual care is implemented! 

From left to right: Chelsea Keeler (social worker), Rebecca Rector (child life specialist), Vicki, Anne Kazak (psychologist), Lamia Barakat (psychologist), and Peter 

On the walk to the hospital today, we walked through the University of Pennsylvania. It has a lot of history and traditional buildings which I enjoyed seeing. 

 More of UPenn

This building filled with windows and rainbow colors is the Buerger Center, where outpatient childhood cancer is provided. 

Tuesday, June 21, 2016

Tuesday, June 21, 2016 -- Mattie died 353 weeks ago today.

Tonight's picture was taken in June of 2008. We took Mattie to a baseball game and I snapped a photo of the two boys together. Ironically Mattie was like me. He put up with sports but did not gravitate to them. So at the park, we were more fascinated by the people, the reactions and the energy around us. 



Quote of the day: The world is a book and those who do not travel read only one page. ~ St. Augustine


Peter and I are driving to Philadelphia today to attend the Coalition Against Childhood Cancer's (CAC2) Annual Summit Meeting. CAC2 is comprised of over 80 childhood cancer organizations across the Country and for the most part, just like many childhood cancer organizations, their focus and discussions relate to the biomedical care of the disease. We have been trying to expand that message, so when comprehensive care is discussed psychosocial care has a seat at the table. Given all that we have been advocating for, CAC2 asked us if we would like to put together a psychosocial talk for the meeting. What I decided to do was transform the talk into a panel presentation with Peter, myself, and four psychosocial providers. Psychosocial care is complex and in a way hard to advocate for because it isn't performed by just one profession. Medicine is performed by doctors, nursing by nurse, etc!!! There are many professional groups who take ownership of psychosocial care, which is great, but also makes it harder to create a unified and standard form of care. Here are all of the professionals who in theory provide psychosocial care: social workers, psychologist, psychiatrists, child life specialists, art/play therapists, educational specialists, nurses and HEM/ONC doctors. 

The panel presentation is geared to accomplish two things: 1) to explain what psychosocial care is and why it is imperative for effective overall care, and 2) to highlight the necessity of Psychosocial Standards of Care, because psychosocial care varies greatly from one treatment site to the next. 

Information about the Summit Meeting:  https://cac2.org/2016-summit-annual-meeting/

Last night was the summer solstice. The first day of summer and the longest day of the year was acknowledged with a HUGH Mattie Moon. 

Mattie Moon over the Washington Monument. 

A friend of ours sent me this photo of the big strawberry solstice moon over a lighthouse in Portsmouth, NH. She knew of my love for lighthouses and of course Mattie Moon! 

Monday, June 20, 2016

Monday, June 20, 2016

Tonight's picture was taken in March of 2009. Mattie posed for a photo with one of his art therapist's, Jessie. Mattie's art therapists knew he LOVED canvases. They couldn't order enough of them, because he loved to paint. This was a Mattie abstract. I happen to love the shapes and colors and it hangs in our dining room! It captures many of Mattie Miracle's colors (red, orange, and yellow). Of course when Mattie created these works of art, I never knew they were going to be legacy pieces after he died. But I am so happy we have them!


Quote of the day: Adversity is like a strong wind. It tears away from us all but the things that cannot be torn, so that we see ourselves as we really are. ~ Arthur Golden


Typically on Father's Day we stay home. But when my friend in cancer asked us to go to Paint Nite with her, I gave it thought. To me creativity and distractions are key to managing grief. So what is Paint Nite? It is a National organization that makes painting a social experience. The events take place in local restaurants/bars all over the Country and for 2-hours you meet in a gathering of 25 people with an instructor. The instructor talks you through every step of creating the painting! Yesterday the painting we ALL created was a seascape with a sunset and boat. Personally, I think Peter found his INNER VAN GOGH today! It was Peter's first Paint Nite and the teacher singled out his painting as an example to show the other attendees! A natural!!! It was a great creative distraction for an otherwise hard day.

We all started with white canvases. But here you can see the process unfolding, and the background Peter created!

This is the final product.... Peter's masterpiece!

People said Peter and I painted the exact opposite feelings... Peter's was tumultuous and I was calm (which is a riot, because I am ANYTHING but calm).

Peter with our friend Attila and our teacher, Luc. Luc was easy going and a lot of fun. He played 80's music while we were painting and I had Peter singing along right next to me.

With my friend Ilona! Ilona and Attila also lost their only child to cancer. So for us it was hard to know what to do with Father's Day.

Luc took a photo of all four of us!

Sunday, June 19, 2016

Sunday, June 19, 2016


Tonight's photo was taken in June of 2004. We took Mattie to visit Peter's parents in Boston. As you can see Mattie was enjoying his time on their tree swing. The ironic part in all of this was when Mattie was initially introduced to any sort of swing, he was cautious and didn't particularly care for the motion. However, he definitely overcame that fear and not only came to love motion, but loved the adventure that motion could produce..... such as roller coasters for example. 






Quote of the day: It kills you to see them grow up. But I guess it would kill you quicker if they didn't. ~ Barbara Kingsolver


For dads, whose child has died, it is hard to know how to acknowledge Father's Day. After all there are no cards and hugs coming their way from their children who died all too soon. Yet these men will always be fathers. In a way it takes a great deal of nurturing, energy, and devotion to keep the memory of a child alive within one's heart and in the minds of others. A few days ago I received this poem from a grief organization, and posted it on Facebook and now the blog. The premise of the poem is to acknowledge father's who lost a child, and if the child could talk to them on Father's Day, this is what the child would say. But notice that on the top of the poem, it says "Dear Mr. Hallmark." What I love about this is it is a message to Hallmark...... start making cards for moments like ours!

THE POEM:

I send this message to my dad from not so far away because I know this day is hard - it's nearly Father's Day. 

I know that we just talked about a card for moms this year, and how no cards were anywhere for an angel like me to share.

And now I find no card again for a dad as great as mine. To thank him for the life he gave to his child whose gone in time. 

He's still the one that I call Dad. Wherever I may reside He tries so hard to comfort mom. Sometimes his tears he hides. 

I hear him as he talks to me, to my picture or to the air. You see I really need a way to let him know I'm there. 

It's hard for me to comfort him to soothe away his sighs. To tell him, "Dad I am okay, I'm right here at your side."

I see in both my mom and dad they grieve in different ways. I know they love me equally, please tell them it's okay. 

My dad he cries while in the car, the shower hides his tears. He holds to all of his regrets while rethinking all my years. 

I need some way to tell him he did it all just fine. That no one is so perfect - to give love is what's divine. 

And so you see, dear Hallmark man, I need to let him know he's the best dad ever then and now - giving all he can bestow. 

My dad, my friend, the one with whom I could walk and talk and play - He needs to be remembered too, like the others on Father's Day. 

Please help me find that special way to tell him all he's been. That by his side each day I'll stay until reunited again. 


In honor of Father's Day, here are some photos of Peter and Mattie through the years! 

The day after Mattie was born (April 5, 2002). I was so out of it an recovering from two surgeries..... that Peter really did all of Mattie's care the first week of his life.

Practically every weekend we walked on Roosevelt Island
with Mattie. We saw the seasons change together, and not to mention we watched Mattie grow up on the island (from being carried on as a baby to him running around on his own). 

I love this photo which I took at Huntington Gardens in California. Neither one of them knew I was photographing them! Typical Mattie.... always investigated the world around him!

Another Mattie classic! We took him to a petting zoo, and Mattie was just not sure how to approach this goat. Once he watched us and saw how docile the animal was, Mattie then followed suit. 

Mattie visiting my parents in California. Mattie was intrigued with the piano and started tapping away at the keys. 

Matching Preschool t-shirts! When I saw these two dressed this way.... it merited a photo!

We took Mattie to the Outer Banks of North Carolina. We went to tour the Wright Memorial, where the Wright brothers discover the art and science of flying. The exhibit featured all aspects of flight in the United States, and you can see Mattie and Peter posed by an astronauts uniform. What you may not be able to tell was Mattie was sitting in a back pack on Peter's back while taking this photo. 

The Boston Red Sox, DC Fan Club!

Father's Day 2007... Mattie's first DC Duck Tour! Mattie thought this was quite the adventure since this tour bus drives on land and floats on water!

This says it all..... while home between treatments, Mattie crawled up on top of Peter for comfort.