Saturday, November 23, 2013

Saturday, November 23, 2013

Tonight's picture was taken in November of 2007. We were at Roosevelt Island walking around and Mattie did his usual routine of climbing on some of the rocks. In hand was an interesting leaf he found. Mattie never left the Island empty handed. He typically came home with large sticks, rocks, and leaves! We had many collections in our garden area at the time generated by Mattie.


Quote of the day: Eventually, everything goes away. ~ Elizabeth Gilbert

The weather has become absolutely frigid and all I can say is I am so happy we took our small trees inside last weekend. We would have been scrambling around today in the wind trying to repot plants, which would have been less than pleasant. I wasn't thrilled having 2000 pounds of candy in our home and also all our trees inside last weekend. It practically felt like we had no living space. But now it all works out and it is lovely to have greenery around us. Especially now that all the trees are losing their leaves.

Peter and I continue to put the finishing touches on Mattie's room. We went out today to buy a new light fixture for Mattie's room, since the current one is a baseball light fan, with the fan blades being baseball bats. That was a great light for Mattie, but now it no longer fits the memories we wish to capture for the room. So it is these small touches that to me make the room special. I have already broken it to Peter that once we finish Mattie's room, we are moving onto our bedroom, which needs to be painted badly. Just as badly as Mattie's room.

Tomorrow a colleague of mine is hosting a jewelry party at her home in DC. I have known Laurie for over a decade and I own several of her artistic creations. Recently she approached me about having a party and giving 20% of her proceeds to Mattie Miracle. The beautiful part about this is she is allowing supporters to purchase items on her website from November 24 to December 31, and will give Mattie Miracle 20% of on-line sales. Very generous and thoughtful.

This evening as we were looking out our window this is what we saw. Perhaps it is hard to see through a photo, but the cloud in the forefront looks like a face. The face is looking down at the building in profile. In the middle is the nose and to the right is the forehead. When Peter showed this to me, it almost seemed like the face of a little boy in the sky.

One of the plants we took inside last weekend was our Christmas cactus. Our cactus is blooming early and is super happy to be inside. We have had this cactus a long time, since Mattie was a toddler. I never ever thought a plant could out last my son. It just doesn't seem possible, and yet there we have it.

Friday, November 22, 2013

Friday, November 22, 2013

Tonight's picture was taken in November of 2007. We took Mattie for a walk on Roosevelt Island and one of his favorite trees there was the crinkly hedge apple. They produce a fruit that looks like a human brain. Mattie was holding one in his hand. I believe this tree also has another name like the Osage Orange tree, which is a fitting name for it because when you split open this large fruit it smells like citrus! This happens to be one of my favorite photos of Mattie.


Quote of the day: When I look at my old pictures, all I can see is what I used to be but am no longer. I think: What I can see is what I am not. ~ Aleksandar Hemon

To all our readers who contacted me about the Fox 5 interview, I thank you!!! I really appreciated your feedback about the candy drive coverage and I am grateful for your thoughtful words.

Tonight's quote caught my attention when I saw it. Recently I saw several photos of my friend in cancer who lost her son in June. The photos were of her with her son. When her son was alive and healthy. Needless to say when I saw these photos I IMMEDIATELY noticed the difference in my friend's smile and the glimmer in her eyes. It was so evident to me the profound impact the death of a child has on one's mind, body, and spirit. The death of a child burns away who we are down to the core. Surviving such a loss requires rebuilding of grand proportion, not unlike how a fire ravages a house. In order to inhabit the house again it has to be completely overhauled. However, overhauling a thing such as a house is a whole lot easier than the emotional devastation that remains for a bereaved parent.

The observation in my friend is not far off base from myself. Naturally I have four years on her, and I have had more time to process the loss of an only child. Yet for Peter and I, we may smile, we may carry on, but we don't look the same. The smiles in our photos between when Mattie was alive and now are VERY different.

Today I had the opportunity to meet my friend for coffee. She and I get together every other month to chat about all sorts of things. Naturally the conversation of holidays came up. She is very sensitive to how holidays impact me and she even admitted feeling guilty at this time of year because she knows what she has (children) and what so many of us are missing. I told her she can't feel guilty about this, and none of us who lost a child would want her to feel this way either. Nonetheless, as I admitted to her, I purposefully remove myself from Washington, DC during the holiday season because I can't take hearing about holiday parties, Christmas gifts, Santa, activities with children, and the list goes on. I also am quite cognizant that I make other parents jumpy. So it is a double edged sword. It is sad however that I feel I need to escape my surroundings because I do not feel comfortable, welcomed, or a part of mainstream society.

As I was working by my new desk in Mattie's room today, another neighbor of mine waved from outside. This has become my social window on the world. It is lovely to have my own space to work, a space that was once occupied by Mattie. I am surrounded by his art and his favorite things. Also outside Mattie's window I can see our beautiful burning bush. Peter and Mattie planted this together years ago. When they planted it, it was only a baby bush. Now look at it. A neighbor of ours stopped Peter a day or so ago to let him know how much she is enjoying our bush! It is more vibrant than ever this year. When I see it, it reminds me of Mattie and his fiery spirit and personality.
 

Thursday, November 21, 2013

Thursday, November 21, 2013

Tonight's picture was taken on Peter's birthday in November of 2007. That day before Peter got home from work, Mattie and I baked a cake together. That was a tradition Mattie and I did to celebrate Peter's day. Notice the cake is ALL vanilla. Clearly a Mattie designed cake, but Peter is just like Mattie. Neither of them are chocolate fanatics like me. As Peter's birthday recently passed, it was hard to reflect on moments like this within our home. Life for us is so different now and at times it is easy to wonder whether we were ever parents at all.




Quote of the day: There is nothing better than a friend, unless it is a friend with chocolate. ~ Linda Grayson

Yesterday my dad sent me an email asking me whether I contacted the media about covering the story of the Foundation's candy drive. I hadn't thought about it for this year, mainly because Fox 5 covered our candy drive last year. Not to mention that I am simply exhausted from schlepping and sorting candy!!!

My dad tried to impress upon me that this is another year, with twice the amount of candy, and far more logistics in play. I heard what he was saying and therefore reached out to our contact at Fox 5 news and alerted her of this year's success. She instantly responded to my email. Mind you she was the reporter who covered our 1000 pound success last year. She told me she was committed to a story this morning but was going to see what she could do. We are very grateful to Beth Parker once again for coming through for us.

This morning at 7am, I received an email from the assignments editor at Fox 5. He let me know that I should contact him immediately because he wanted to try to get our story covered. Literally at 7am, Peter and I were coordinating plans. The camera truck showed up at our complex by 8am and everyone in the complex was taking notice. The camera technician, Pat, was wonderful!!! Pat explained to me that my interview was most likely going to be live with the anchors in the studio and therefore I would need to wear an ear piece. I did not like that whole notion because it is very hard to talk to someone without that person being physically present. Not to mention the ear piece itself is disorienting. However, Pat did alert me to the fact that Wisdom Martin, the Fox 5 morning anchor was trying to make his way through traffic to our complex. If he arrived on time, then I wouldn't need the ear piece and could talk live to Wisdom.

The coordination of trying to load the cars today was a feat of grand proportion. We got our building's plant manager involved. Ollie mobilized forces and had two of his crew helping us with rolling carts and bins. We really needed all these men because moving 2000 pounds of candy from one part of our complex to another is close to impossible. Ollie allowed us to park in the complex's loading dock and this is where candy was loaded and our interview occurred.

However it is times like this when I really need an assistant. I was balancing a camera, a phone, and trying to figure out what I was going to be saying. While taking photos and the interview taking place my friend in cancer, Ilona, started sending out messages on Twitter and Facebook for us. That was an absolute gift to us.

Peter snapped a photo of me talking with Wisdom (by the way I asked him how he got his name, and it is a family name, originating from the bible) and you can see Pat, the cameraman. Pat really helped us stage the candy on the car and around the car and even caught Peter and the men in motion carrying candy and loading the minivan.

Ollie, Emmett, John, and Peter moved all this candy today and loaded a minivan and my car. We couldn't have done it without their help!

When I am telling you we had a full minivan, I am not kidding you. There was only room for Peter to drive it, no one else could have fit inside with him.

My car wasn't as weighed down as the minivan, nonetheless, it was quite full too.

In this photo from left to right are Detra, Wisdom, Vicki, and Peter. Detra was managing our front deck this morning and she happens to be a huge Wisdom fan. So Wisdom was gracious and allowed us to take photos with him. Peter and I are very fond of Detra and all the staff working in our complex. In so many ways, they are like our second family. They really look out for us, and today was case in point. People bent over backward to help us. Wisdom is a true charmer and a delight to talk with. He is beautiful both inside and out and I can see why he works the early morning shift. He is like a ray of sunshine even on a cold and cloudy day.

When we arrived at Georgetown University Hospital this morning we were greeted by Linda (Mattie's Child Life Specialist), Katie and Jess (Child Life Specialists), and a child life intern. It literally took all of us to unload this candy from the minivan and car and cart it to the storage unit within the Hospital. I stayed with the cars, but Peter tells me that people within the hospital were all aglow by seeing the candy strolling by in huge carts. Perfect strangers were staring and then started up conversations about candy and their favorite candy. I am sorry I missed this because I think candy is a unifying force and most of us have good feelings when we see a piece of candy that we love. Apparently the word in the hallways today was that Snickers are the best!!!

It is no secret that I am very fond of Linda, Mattie's Child Life Specialist. Linda and I went through a great deal together and through these moments, we developed trust and a deep rapport with each other. Being in her presence today somehow reminded me of Mattie and our bond we all share together. It is with gratitude that I always remember Linda, Mattie's buddy and fierce advocate.

Wednesday, November 20, 2013

Wednesday, November 20, 2013

Tonight's picture was taken in November of 2007. Mattie was healthy back then and childhood cancer was not in our everyday lexicon. That day I took Mattie to visit Peter at his office. As you can see Mattie helped himself to Peter's dry erase board and began drawing away. There were many tell tale signs in a Mattie drawing. First and foremost there was always a SUN, then usually a tree or a bird, and lastly ground. There was always context to Mattie's pieces. Given that the sun was so predominant in Mattie's works, it seemed very fitting that it should be the symbol of Mattie's Foundation.


Quote of the day: It never leaves. It’s always there, watching, steadfast, knowing us in our light and dark moments, changing forever just as we do. Every day it’s a different version of itself. Sometimes weak and wan, sometimes strong and full of light. The moon understands what it means to be human. Uncertain. Alone. Cratered by imperfections.  ~  Tahereh Mafi


When Mattie entered his first year of preschool, his lead teacher was Margaret. In Margaret's classroom, Mattie was known as "Mattie Moon." Basically this preschool assigns a symbol to each student that has the same first letter as the child's name. Needless to say, Mattie Moon was a catchy title. In fact, even some adults would refer to Mattie as Mattie Moon. However, this nickname seemed to take on more significance after Mattie died. In fact, I still have people who email from all over the country to tell me they spotted a Mattie Moon up in the sky. As if to tell me that Mattie was watching over all of us and most importantly that this glimmer of light in the night sky means he hasn't been forgotten. It is very touching in many ways.

Tonight I am up and working on different Foundation tasks and while sitting in Mattie's transformed room, at my corner desk, I looked out the window. To my surprise staring back at me was a Mattie Moon. Since I have moved into Mattie's room and work there most of the day, I have spotted all sorts of things outside Mattie's window. It is no wonder why Mattie used to love his windows. I remember one summer night Peter and I tucked Mattie into bed and then we went outside on our deck to sit down. Low and behold who was watching us from the window above???? It was Mattie. He used to love to stand on his bed and look out. Now I get why!!! I am carrying on the tradition and I am so happy to have migrated away from the kitchen table to a space of my own. A space that was once inhabited by Mattie.

Today was a day of many lessons to learn. This afternoon I went out to lunch with a colleague of Peter's who is a social media guru. She enlightened me about the issues with Facebook and how it really is not a good tool to build new foundation members, then we discussed Twitter, and other strategies. It is very clear to me that this woman understands the social media space quite well, so I will return to meet with her next week for a Twitter tutorial. I like Twitter even less than Facebook, and for those of you who know me, you know I rarely am on Facebook. But I realize this is how people communicate these days and in order to build up recognition a social presence is vital. I spent the rest of the day learning a whole new electronic newsletter system. The company who hosts our newsletter changed platforms. I can't tell you how long it took me to learn the OLD system, the fact that I had to learn a new one today wasn't greeted with a smile. In fact by the time Peter got home, I was snappy and ticky! But after about 10 hours working on this, I think I am proud to say I have mastered a new system and a November newsletter will be going out shortly!!!

Tuesday, November 19, 2013

Tuesday, November 19, 2013 -- Mattie died 218 weeks ago today.

Tonight's picture was taken in November of 2008. I do not typically post photos like this because they aren't pleasant to look at. However, this is the reality of osteosarcoma. Osteo, in my opinion, is a horrible cancer that can easily destroy the body, mind, and spirit. This was what Mattie looked like a day after his second limb salvaging surgery. Practically every part of Mattie was wrapped up and managing the pain was a true test. If the bandaging and pain weren't hard enough to see and experience, then add into this all the tubes, drains, and other IVs that were going in or out of Mattie. If we had any doubt of his super human strength, I think this photo sets things straight.


Quote of the day: Children see magic because they look for it. ~ Christopher Moore


This summer Dr. Shad at Georgetown University Hospital reached out to me and asked whether it would be okay for a couple who had just lost their only child to contact me. Since our first connection together, Ilona and I have become buddies in grief. Ilona and her husband Attila, established the Chris Lantos Foundation in honor of their 12 year old son who died from Leukemia in June. One of the things Chris loved was his iPad. It helped him manage the isolation and the stresses of coping with cancer. In Chris' memory, his parents raise money to give iPads to children battling cancer. In fact, in September through their Smoothiefest they raised over $10,000 to fund this electronic psychosocial support.

Mattie Miracle works behind the scenes to support the Chris Lantos Foundation and we were honored to be included today in the distribution of iPads to two children at Georgetown University Hospital.

The first child we met is five year old, Lemar. Lemar's primary language is Farsi, yet by visiting the clinic, he is learning English. This fellow is precious. The BEST hugger!!! I got a hug today which I won't forget anytime soon. The last five year old who hugged me this way was my Mattie. So to me, the hug was my gift! Lemar was THRILLED to receive an iPad and felt very special being the center of all of our attention. That too was priceless to observe.

The second iPad recipient today was Jamal. Jamal is a seventh grader and there was a noticeable difference between Lemar and Jamal. I attribute this to the simple fact that Jamal is a teenager who is quite cognizant of his disease and how some children do not survive their battle. However just like Lemar, Jamal was appreciative of receiving his own iPad and being able to connect with the outside world whenever he wants!

This dynamic group of professionals all work in the pediatric Lombardi Clinic. From left to right are: Janelle (one of Mattie's Hem/Onc nurses), Miki (one of Mattie's Hem/Onc nurses), Kelly (a social worker), Katie (an art therapist), Mary (head social worker), and Jan (nurse practitioner). These ladies all supported the Smoothiefest on September 30th and decided to wear their t-shirts in clinic today because they support the work that we do for children and their families.

Occasionally on the blog I refer to the painted clinic ceiling tiles. Look at the ceiling in the photo above. These are the tiles I am referring to. Mattie painted several tiles in clinic: a rainbow tile with his friend Maya, a haunted house, a HUGE roach, and Scooby Doo (a tile Mattie created with Peter and I shortly after diagnosis). For me the ceiling holds many memories as does the space and the staff. The ironic part is I have lived most of my life OUTSIDE of a hospital setting. I only lived in a hospital for 15 months of my life (while Mattie underwent treatment), yet I suppose the level of intensity and the nature of why I was there makes that time period seem much longer. In many ways I feel more comfortable inside of Georgetown rather than outside the Hospital. It is within the walls of Georgetown that people saw my daily living conditions 24/7, they saw what Mattie endured, and walked that journey with us directly. I don't need to explain Mattie's battle to them and I don't have to explain my grief either. It is just understood! 

Monday, November 18, 2013

Monday, November 18, 2013

Tonight's picture was taken on November 12, 2008. As you can see Mattie wasn't a happy camper. First of all it was some ungodly hour of the morning and we were in the pre-op area of the Hospital. By this point Mattie had a pretty good understanding of what was going to happen to him. The first surgery of his right arm in October of 2008 was a major reality check for all of us. It was a massive surgery that took time to recover from. Of course there wasn't much down time, because Mattie had to go right back on chemotherapy as quickly as possible. November 12th's surgery involved Mattie's left arm, left wrist, and right leg. I would have to say after this surgery, we all reached a NEW all time low. If that was even possible. Fighting cancer was hard enough, but fighting when so physically disabled was asking for superhuman courage, hope, and strength. Mattie was a super hero for SO many reasons! I have no doubt that if what happened to him occurred to an adult, most adults would be balled up in a corner unable to function. Yet Mattie ultimately trusted Peter and I and he knew we were working very hard to get him better. With regard to Mattie's surgeries, I always told him that he was my bionic boy with special prosthetic body parts. Mattie got a kick out of my description of him, because I told him his friends would have to be careful around him because his bionic parts were so strong and if someone bumped up against him they would go flying!

Quote of the day: Extending gratitude to another says, “I see what you’ve done and I thank you for the energy you put forth. ~ Molly Friedenfeld

Last night after working through chores all day, Peter and I got it together and staged 2000 pounds of candy on our couch. Yes there is a couch somewhere underneath all of this!!! I could describe in words what a TON of candy looks like but I think the visual speaks for itself. Peter posted this photo to our Foundation Facebook page last night, and we have close to 200 likes on it. I would say this candy makes a statement and we certainly couldn't have done it without several of our dedicated friends who helped us advertise the drive in their communities. For all our contributors, THANK YOU!

I thought 1000 pounds of candy last year was overwhelming! That was nothing in comparison to double that amount. When I am telling you there is candy everywhere and our home smells like a candy factory, I am not kidding. The first week took some adjustment and the intense smell of candy triggered a migraine. Now I think I am used to it.


This morning Peter went for the day to work in Pittsburgh. When I headed to our car to drive to my morning appointment, I thought the car looked funny. Upon closer inspection, I realized one of the tires was VERY flat. This is not what I wanted to see or experience this morning. My running joke is if there is something that can puncture a tire, I will find it! I can't tell you how many times I have had a flat tire this year. Any case, usually when I have a car issue, I turn to Peter. However today that wasn't possible, since Peter was on a plane. At first I have to admit I was stymied. I was literally stuck and did not know what to do about this problem. Clearly I cancelled my morning appointment and contemplated waiting for Peter to get back tonight. But then I figured if I could manage Mattie's cancer, dealing with a flat tire had to be much easier. So I went back upstairs and Googled our tire place in Arlington, VA. I wanted to make sure they could fix my tire today! Then I called AAA. I couldn't function without AAA and today they couldn't have been more helpful.

My car is parked inside a residential parking garage and fortunately I told this to the AAA operator because she sent the appropriate truck that could fit into the garage. Because I live in the heart of the city, getting into our garage is no easy feat and it requires a security card. I explained to the guard by our gate that he had to let the AAA truck into the garage (I couldn't use my card alone, I needed the security guard to swipe his special card key). He was hesitant at first but I wasn't going away any time soon without getting him to cooperate. Any case once AAA was in the garage, I was approached by a neighbor. I did not know this fellow but he told me that he had to call AAA last week for his car and the garage attendant wouldn't allow AAA inside to help him. He wanted to know my strategy for how I handled this. He also wanted to know what I said to AAA to get the right vehicle to report to the scene. A riot no?!!! Me the inexperienced car person is getting consulted!!!!

After the flat was changed with my replacement tire, I then drove the car to get the flat tire examined and plugged. It was a full day of running around. Life is filled with so many unexpected issues that rise. Dealing with cars and mechanical things isn't my forte but I felt like I achieved a great deal today without having to bother Peter. I now have this tire place in my phone address book and I feel equipped to handle this when it happens to me again! I say again because it is my track record. The funny part is when the tire center examined my car, they found a large shard of glass in the tire. He told me in all his years of tire repair, he never saw such a sight! Yep, seems fitting for me.

Sunday, November 17, 2013

Sunday, November 17, 2013

Tonight's picture was taken in November of 2008. Mattie was in the clinic of the hospital and as you can see he was creating pictures of ROACHES on the computer with his art therapists. Mattie knew I hated bugs but especially roaches. The simple fact that I despised something intrigued him and therefore his fascination grew. I don't think Mattie ever saw a live roach, but he certainly had plenty of rubber ones to scare me and his nurses. In fact at one point Mattie painted a roach about his size on a ceiling tile in the clinic. This tile used to be in the clinic but after Mattie died, the ceiling tile disappeared and no one seems to know where it went.


Quote of the day: We may not have the ability to change all of the world's wrongs, but we can make a difference where we are. ~  Dillon Burroughs

Peter started his morning by visiting Attila. Our friends Attila and Ilona collected 400 pounds of candy for our drive and sorted it! I love the visual they created of their finished product! Needless to say that was a labor of love which we greatly appreciate!!! We added their contribution to our current stock, and I can officially report that we collected over 2000 pounds of candy this year! So literally when I say we collected a ton of candy, I am NOT kidding. Since it is funny that 2000 pounds actually equals a TON!

Peter runs chores in the morning on the weekends. It helps to ground him and get him moving on the weekends, a time in which Mattie and Peter used to do things together. Without Mattie in our lives, the weekends are like one big VOID!

Peter came back from grocery shopping this morning and told me that he had an interesting dialogue with the check out person. The checkout clerk noticed Peter's Mattie Miracle recyclable shopping bags. In fact, the clerk looked at the bags and put his hand on the Foundation logo and then looked down at the floor as in a moment of silence. Peter observed all of this and so they began to talk. The clerk wanted to know how Peter was connected to the Foundation and naturally Peter explained that Mattie was his son. The man then told Peter about his son who has been battling non-hodgkin's lymphoma for years and is now on a trial. Peter told me the clerk was visibly upset and for that moment in time they bonded and understood each other. Even though they had never met before. I could tell Peter was touched by this encounter and what it came down to was that Peter was appreciative he could talk about Mattie with someone who wanted to listen and also someone who understood the battle.  

This morning Peter and I went outside to finally transplant our Meyers lemon tree into a bigger pot. The tree literally was bursting out of its old pot and split the pot. Peter had a four legged helper beside him. Our resident Jack Russell terrier, JJ, came by to help out. Check out how JJ was watching Peter.

After the tree was repotted, Peter began to play with JJ. A lemon fell off our tree and they used it like a ball. So here you can see JJ chasing after a lemon. The funny part is when JJ put the lemon in his mouth, he clearly didn't like the flavor!!!

It was another day of working. After transplanting the tree, we brought it inside our home, along with several other little trees. Plants that won't manage in the cold come inside, so now we have that greenhouse look again in our living room. After that feat, we moved onto hanging art and photos in Mattie's room. Here is one of the walls. I created photo canvases for Peter's birthday. We hung up several today and I am in the process of ordering more for this wall. So this is a wall in progress right now. The last time my friend Nancy came to visit me from NY, she brought me this beautiful orange butterfly. Which has found a home on Mattie's wall.

We are now surrounded by Mattie's Art! Over the desk hangs the beautiful still life painting Mattie created in art club during his kindergarten year. Under the still life is a small canvas of a heart Mattie painted for me on Valentine's Day 2009. It reads Love Mommy.

At one time these shelves were filled to the brim with books, toys, puzzles, and other Mattie things. This piece of furniture has now been cleaned out, reorganized, and is displaying things that were meaningful to Mattie. You can find a BIG plastic roach on the shelf, legos, Wall-E, Sponge Bob, a piece of a coconut shell, Lightning McQueen, model airplanes, and of course reptiles!

In Mattie's first year of preschool he created many wonderful pieces of art. In fact his teacher, Margaret, was the first one to tell me that Mattie was creative. Any case, once Mattie graduated from Margaret's classroom, I created this collage.

This is what Mattie's room currently looks like. I have a beautiful butterfly comforter for his bed and some other things which will slowly be added to the room. But it is amazing to think that only three months ago this room looked more like a storage closet than a bright and spacious room of remembrance.