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.
 

Saturday, November 16, 2013

Saturday, November 16, 2013

Tonight's picture was taken in November of 2008. At that point Mattie had his second limb salvaging surgery. Which means that his right arm, left arm, left wrist, and right leg were all operated on! Specifically his arm bones, wrist, and leg bones were removed from his body and they were replaced with some type of prosthetic. Mobility was a major issue for Mattie and at that point Mattie's cancer journey became even more horrific. Being so disabled depressed Mattie, who was an active six year old. Needless to say Thanksgiving and Christmas of 2008 were absolute nightmares for us. Mattie was living through PTSD like symptoms and his level of depression was hard and heart breaking to manage. I have no doubt these memories will always impact my view of the holiday season for the rest of my life. What I love about this photo was Patches, our calico cat, came to join Mattie on his hospital bed, which was in our living room. We kept Patches for as long as we could at home while Mattie was battling cancer, but since we were rarely home, we made the decision to board Patches at her vet for over a year. Patches was a sickly cat and needed medication and constant care. Rest assured if Nurse Patches was home, she would be on the scene to provide moral support.  

Quote of the day: When one door of happiness closes, another opens, but often we look so long at the closed door that we do not see the one that has been opened for us. ~ Helen Keller


I was invited to a fundraising jewelry party today for my friend Ilona. Ilona lost her only child to cancer in June of this year. We are on different points of the grief continuum, yet we understand each other and can appreciate our similarities and differences. A colleague of hers from work hosted a beautiful event today. The event had all sorts of home made foods and the jewelry was stunning. All sorts of pieces, with diverse materials. Not run of the mill jewelry and what I loved about the young designer is that she comes from a family of artists. Her parent's home reminds me of a residential art gallery. So that alone was a treat to be in such an artistic and stimulating setting. The jewelry designer is passionate about her work and spends a great deal of time, energy, and focus on designing pieces. She even works with copper and we learned today how she hammers it into shape and also fires and seals it so it doesn't oxidize. Needless to say I bought several pieces of her jewelry and she was kind to give 20% of all her proceeds to Ilona's foundation.

Since I have gotten to know Ilona, I have met several of her friends. All of whom are truly lovely women with different talents of their own. I remember what my own grief looked like at five months post Mattie's death, and this gives me some insight into how Ilona must be feeling and processing things around her now. Diversions are key and I am so happy such a party was planned for today. A day which was grey and gloomy.

After Ilona's gathering, I found myself with another full trunk of candy. Ilona gave me some of the candy she has sorted so far and then I picked up the last batch at another friend's home. I can't believe it, but the grand total is 1513 pounds collected so far! We pick up our last batch tomorrow.

Despite being with lovely people today and also the candy drive coming to an end, I felt a great deal of sadness come over me. Not to say that I don't feel sadness on any given day, I do. But it is typically contained. This evening while driving, which is when it usually hits me (because I am alone), I felt very depressed, very sad, and teary. When I get into these moods it is hard to see anything very good about the moment or in life in general. It is then that I reflect on those around me doing positive things with their children, being out and about, and I realize once again how different my life is. Trying to balance these feelings and emotions are difficult, along with trying to find a way to not completely shut out those around me.

At the end of the day, I would love to adopt a mind set change, to snap out of it, to be able to move on and have a positive outlook for the future. But I just don't foresee that as possible. I connected with a woman recently who is 10 years into the grieving process of her daughter. She basically told me I am being too hard on myself and that from her perceptive and that of her organization, I am still in the early stages of the grief process as it relates to losing a child. She told me she did not see a change within herself until year seven or eight. An interesting notion, but for now, I know how I feel and I know that throughout this loss process, there are cycles and waves that crash upon us. However, one can't always predict when they will happen and certainly as time marches on, fewer people are around to support parents through these difficult times.

Friday, November 15, 2013

Friday, November 15, 2013

Tonight's picture was taken in October of 2008. Mattie was home between treatments and we were sitting in his bedroom working on a puzzle. At that point Mattie was only three months into treatment and his room was somewhat organized at that point. However, quickly his room evolved into something that looked more like a warehouse. One of the things Mattie loved was puzzles. We really did not need to teach Mattie how to do a puzzle, he seemed to have an innate ability to assemble them! As I look at this photo tonight I realize how different Mattie's room has now become after the months of transformation. Am I proud of the work Peter and I did on Mattie's room? YES, but at the core, I wish I never had to do it.  


Quote of the day: Those who are happiest are those who do the most for others. ~ Booker T. Washington


I went to visit my friends Tina and Heidi today. Both of them had their final candy collections for me. The beauty of what I picked up today, besides the quantity, was that it was all sorted!!! Transporting candy is no easy feat because it weighs quite a bit in bulk, but to receive it sorted is a major gift. I can officially say that today was my last day of sorting candy! I have two more collections that I am waiting for, but these collections will come to me sorted. Therefore I think it is safe to say that for 2013, I am done with sorting. I just can't believe it and I particularly can't get over how much candy was sorted!! I am terrible at estimating weight, but by this weekend we will start calculating poundage. All I know is the candy seems to be taking up MUCH MORE real estate than last year!!! To my candy sorters (Heidi, Isabel, Leslie, Faye, Tanja, Katharina, Tina, Carolyn, Ilona, Abbie, and Shayla) a BIG THANK YOU!!! I could not have done this without you and I mean that sincerely.

This evening while sitting in Mattie's room typing on the computer, I heard someone whistling to me outside the window. I knew exactly who it was, it was my neighbor JP, with his dog JJ in tow. This is my first week working at a desk by the window in Mattie's room. So it is very easy to see me if passing by our window. Once I heard the whistle, I stood up and opened Mattie's window and began chatting from the window to my neighbor. Of course JJ was happy to see me and came right into our deck space and started walking around. JJ and Mattie were good buddies and I suspect a part of JJ will always be looking for Mattie. Neither one of us have truly accepted this loss.

I think one of the biggest changes in our lives after Mattie died, is the loss and connection to others. We lead a much more isolated and secluded life now. I suppose there are many reasons for this, first of which is our original social circle all has children in it. Typically children bring couples together, without Mattie now, the impetus to get together dwindles. But also I think a part of the seclusion occurs for self protection purposes. We are different, we know we are different, and in order to avoid further pain and reminders, we separate ourselves from others. I think as holidays approach the need for disengagement increases exponentially. As I walk around town now, I can't help but see Christmas trees popping up, ornaments, and the discussion of parties and plans. All very difficult discussions and sights for me, even four years after Mattie died. Some aspects of loss do not get easier, they only get harder as the reality sinks in and the hopes and plans for the future melt away.

Needless to say, I enjoyed JP's visit tonight. In all reality I am a very social person and I think it is ironic while sitting in Mattie's room that I should be connected to the outside world in this way. It seems so symbolic, since while I was raising Mattie I met so many people. Though Mattie is not with me now, his window in his room serves as a way for me to connect with those around me. Mattie is still working his magic in my life.  
 

Thursday, November 14, 2013

Thursday, November 14, 2013

Tonight's picture was taken in October of 2008. Mattie was in the child life playroom at the Hospital and doing another one of his favorite activities.... playing with remote controlled vehicles. Mattie received his first remote controlled car when he was one year old. A friend of mine gave Mattie this huge blue remote controlled car for his birthday and though he wasn't talking at one year old, Mattie definitely caught on quickly about how to play with such a car. Mattie had many remote controlled things in the hospital. Cars and trucks of course, but Mattie's favorite remote controlled thing in the hospital was his huge spider. Mattie loved catching his nurses off guard and they learned to be on their toes with Mattie and to also have a sense of humor. The moving spider was an instant attention grabber.

Quote of the day: When we involve others in spontaneous acts of kindness, we go from being strangers to becoming a united team connected at the heart level. ~ Molly Friedenfeld

Tonight's quote beautifully reflects the nature of our Foundation's candy drive. People we do not even know are giving us candy. People within our community, workplaces, schools, and moms groups! It is remarkable and through this project we are becoming a united team to help families caring for children at Georgetown University Hospital.

Those close to me are recognizing that I am exhausted from the sheer volume of candy that we have been processing over the course of the last two weeks. Which is why when friends offer to help now, I accept it and am greatly appreciative! The next couple of days will be our last push for candy. But at this point, I am not sure how much more sorting I can do. Today I received this photo from my friend Ann. Ann's mom, Mary, has a caregiver named Shayla. I have known Shayla for five years and today Shayla lent a hand and was sorting candy. I value all my sorters this year. As the candy drive is growing bigger and is catching on within our communities, we are already thinking ahead for next year with regard to how to streamline the process and get volunteers to help us sort candy.

We have a new addition to the top of the blog. You may have noticed the beautiful lotus flower! My friend Laurie is a cancer survivor. While battling cancer, she began to create jewelry. It started as a form of therapy for her and has evolved into her own business called Jewels in the Lotus. I own several of Laurie's creations and I love their fine craftsmanship, the beautiful materials used, and her creativity in their composition. Laurie's pieces are not mass produced and therefore they are as unique as each of us. Laurie is a Mattie Miracle supporter and came up with the idea of having a fundraiser for us. From November 24 to December 31, if someone purchases a piece of jewelry from her website, she will donate 20% of each sale to the Foundation. Please check out her website and consider sharing it with a friend!
 

Wednesday, November 13, 2013

Wednesday, November 13, 2013 -- Happy Birthday Peter!

Tonight's picture was taken on November 13, 2008. The last birthday Mattie celebrated with Peter. That day Mattie created a cake made out of model magic. Mattie shaped it and colored it and even added model magic candles to it. This cake can still be found on Peter's bureau today. As you can see we celebrated Peter's birthday in the Hospital. We actually celebrated many holidays in the Hospital that year, which is why it became our home away from home.





Quote of the day: When we face our fear of death and slow down our busy lives, we come to realize our relationships are precious, a part of life’s foundation. Knowing this fact helps us to understand that death’s true purpose is to teach us how to live. ~ Molly Friedenfeld

I think the candy collection for our Foundation drive has now gotten to me on many levels. I am tired of candy, I am tired of sorting it, and I am most definitely tired of smelling it. Today alone the fragrance triggered a migraine headache. I was so happy that I had a chance to meet my friend Leslie in Maryland and escape our home for a few hours. As you can see Leslie and her family have also been busy. collecting and sorting!!! Here was the collection I picked up from Leslie. I honestly think I could open up a candy store. If anyone from my complex happens to visit me, the sight alone of our first floor is frightening. It actually looks like we are certifiable with candy and plastic bags everywhere.

It is hard to describe the true pervasive nature of this candy, but it is everywhere!!! The next couple of days is our last push for candy. I still am sorting it and collecting it from others but by next Thursday all the candy will be out of our home and into the Hospital! Everyone who participated in this drive has got to be super happy for a job well done!!!

Tuesday, November 12, 2013

Tuesday, November 12, 2013 -- Mattie died 217 weeks ago today.

Tonight's picture was taken in November of 2008. In the photo with Mattie and Peter is Debbie, Mattie's art teacher at his school. Debbie and Mattie planned a surprise birthday celebration for Peter. On the eve of Peter's birthday, I look at this photo and remember. Debbie gave us many wonderful memories, including Mattie's beautiful "Mr. Sun" painting. Debbie and Mattie frosted this cake and Mattie was very proud of this accomplishment. It was the last Peter birthday celebration we had and now somehow birthdays do not have the same meaning for us.


Quote of the day: We cannot tell the exact moment a friendship is formed; as in filling a vessel drop by drop, there is at last a drop which makes it run over; so in a series of kindnesses, there is at last one that makes the heart run over. ~ Gloria Naylor

I honestly have to empty out my car's trunk each day because guess what??? I keep filling it up. After zumba class today, I headed to my friend Heidi's home. Heidi and her family have been busy collecting and sorting candy! More keeps coming in and I am just so thankful that Heidi has taken on sorting her huge collection. A great gift to me! Mind you I picked up over 40 pounds of candy from Heidi last week. This was today's collection and my final Heidi collection is coming to me on Friday. Get the picture???? It is a lot of candy!!!

Here is a photo of our youngest Mattie Miracle Candy Drive sorter. This is Abbie and she is 11 years old. Abbie is my friend Ann's daughter. Abbie and I have a history together because while Mattie was battling cancer, she and Mattie became close friends. It is an interesting commentary because while I had Ann, Mattie had Abbie. Abbie was a loyal buddy and was never phased coming to the hospital, seeing the big iv machines, or even experiencing Mattie's ups and downs. It seems very symbolic that Abbie is now participating in our drive in this way.
 
Tonight's quote I think is quite meaningful and beautiful. The analogy of a cup running over because it is filled with drops of liquid, is a bit like the making of a lasting friendship. Over time enough trust and kindness builds up that it establishes a very special bond. I had the wonderful opportunity to connect with two such friends today and the fascinating part about being in such presence is it makes me appreciate my good health, my ability to walk, and live an independent life. We take such things for granted and yet daily there are people struggling with horrific diseases and illnesses. May we never walk away from those in need, who need kindness, compassion, and our understanding. I have learned in life that it is only through truly giving of yourself that you receive the greatest gifts life has to offer....... the love of another person.

Monday, November 11, 2013

Monday, November 11, 2013

Tonight's picture was taken in October of 2008. That Halloween evening, Mattie met up with his very close preschool buddy, Zachary. Together they went trick or treating. It was a very special night in so many ways. Mattie already had his first limb salvaging surgery by that point and was very tentative about moving around and being around kids with his wrapped up right arm. That evening, Zachary and Mattie went trick or treating with a couple of Zachary's neighbors. Any case, the other kids were getting tired of Mattie's slow pace. Remember while trick or treating it is dark outside and sidewalks can be really difficult to negotiate especially when they are not even. Mattie was afraid he would trip and fall on the arm that was operated on. The other kids were really pressuring Zachary to dump Mattie and instead go with them at a quicker pace. The quicker the pace the more candy you can obtain. In any case, Zachary was young and he could have selected to go with his neighbors but in the end he told them he was with his buddy Mattie and that they should go on ahead without him. I will never forget that dialogue or scene! EVER!!! After they went trick or treating together, you can see that Mattie was beginning his candy sorting process!!! Mattie loved to sort and it is ironic now that he is gone, Peter and I continue the tradition of sorting. Not for ourselves but for hundreds of families at Georgetown University Hospital.


Quote of the day: As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them. ~ John Fitzgerald Kennedy

I think each day it is important, but especially on Veteran's Day may we reflect on the men and women who serve and have served our Country keeping us safe, sound, and having the luxury of freedom. May we never take this or them for granted.  

Last week my friend Tanja emailed me to let me know she had today off from teaching at her school. She planned for a couple of us to get together today. Though I wasn't expecting this at all, Tanja worked the entire day on helping me sort candy. Frankly this is NOT how I would have wanted to spend my day off, but that is the beauty of friendship. Tanja wanted to help me! Sorting candy gave us the time to spend together and to chat about all sorts of things. Bonding over sorting!!! Needless to say Tanja and I worked seven hours STRAIGHT. When her daughter Katharina got home from school, she found me and her mom sorting candy. She could have said hello and then walked away to manage homework and other things, but instead she jumped right in to help. I did not have to ask her! This caught my attention immediately. Tanja and Katharina got a good glimpse at what our lives have looked like for the past two weeks. The candy that we processed today came in large trash bags. I took a photo of one because it is hard to describe why sorting is so complicated, until you see an actual bag before us. Such large bags are not a good way to bring candy to the Hospital. Besides the fact that it is impossible to pick up because of weight, there is no rhyme or reason to the candy, not to mention this would be a terrible way to store the candy for a long period of time.

It seemed like we filled a ton of bags today. To be specific we filled 96 one gallon Ziploc bags!!! Katharina had me laughing, after sorting with us for at least two hours, she proposed.... you just want to fling this candy out after a while! I laughed because I said the same exact thing to Peter this weekend. After a certain point of doing this it can become overwhelming. As Tanja said to me today, seeing all of this could make you want to cry. It is that monumental! Totally agree! If we weren't motivated for the greater purpose, it would have been very easy to give up. In addition to having human help, we also had animal moral support. I was surrounded by a bird, dog, and guinea pig! Tanja's dog was a trooper and kept watching over us today, as if trying to figure out just what we were all doing!  

After hours and hours of sorting, we loaded everything into my car! Candy everywhere!!!

I not only had a full truck, but my back seat and front seat were filled!

When I arrived home, Peter had just gotten home from work. Thankfully because he helped me get all of this candy out of my car and upstairs. Our whole home is LINED with candy! I am really looking forward to bringing this to the Hospital next week!!!

We have piles everywhere and literally our home smells like a candy factory. This may not look like a lot right now, but once we stack it up for a total photo the picture will speak for itself.



 

Sunday, November 10, 2013

Sunday, November 10, 2013

Tonight's picture was taken in October of 2008. Next to Mattie was his tinker toy haunted house. Mattie was into making haunted houses that year. He made an elaborate one in clinic from a cardboard box and then he made this one at home. Mattie included paper pumpkins and ghosts on the structure and he even strung the whole thing up with lights. At night would we turn on his orange lights and see the house aglow. But what I also see subtly in this photo was the chaos that was beginning to pile up all around us. I tried to keep it organized but by the time Mattie died, I would say the periphery of our living room and dining room were filled or stacked with hospital items, toys, and other Mattie things that came into our lives while he was battling cancer. The cancer within also in essence became a visible cancer that took over our home.


Quote of the day: Funny enough, I sit on my porch all day, wave and smile at everyone. Some of them aren't sure, some smile right back, some come back later and say; "This morning you made my day, had the best day all week, thank you for that!" Smile and wave, that's all it takes.  ~ Martin R. Lemieux

I can safely say that the Mattie Miracle Candy Drive is transforming several of our friends' homes. I received two photos today. This is the candy at my friend Ilona's home. Ilona and I recently became friends in June. Unfortunately we became friends because we both have lost our only child to cancer. Ilona and her friends are helping our candy drive and as  you can see they are doing a great job!!! This collection alone is at over 100 pounds.

My friend Leslie has collected candy for us now two years in a row. Each year Leslie and her daughter sort the candy for us. Which is a HUGE help! As you can see Leslie clearly has an over 100 pound collection as well! If Mattie could only see this, I think he would have found this totally fascinating! Mattie LOVED to sort candy. He did it with his own Halloween candy and he loved to count it as well. The irony was Mattie did not eat whatever he collected, unless he received lollipops or pretzels. Those items he never traded or gave away!

Peter and I have worked the entire day. For us weekends are just as labor intensive at the weekdays! Maybe even more so. Today while Peter was doing an IKEA run, I sat down and folded and labeled all the clothing items of Mattie's that I would like transformed into a memory quilt. On Tuesday, I am shipping this box to my friend Terri who is a master quilter. Terri has a child who was treated at Georgetown for cancer, and the irony is when Mattie was battling cancer he received one of Terri's quilts. We did not know who Terri was at the time but Mattie loved his puppy dog quilt! I am honored that Terri will be working with us to create such a special Mattie memory. Given that her son battled cancer, I feel she understands the important nature of this creation.

Our Mattie room transformation is well underway. We are using part of the room now as an office. In essence this is where Mattie Miracle paperwork and work will be happening in our home. I am so thrilled to be away from the kitchen table now and to have an official space! Mattie's room is aglow and the color just brightens everything up. We are also thrilled to be able to display Mattie's art canvases, Mattie's special toys, and his creations. It is a work in progress, but progress is being made. I have always wanted a corner desk overlooking our deck and garden space and that is what Peter assembled for me today. Though this is all looks positive, the act of removing Mattie's things from his room and transforming the room are incredibly hard. Needless to say, after a full day of this we are both wiped out, we really can't speak with each other now because of exhaustion, and we just need time now for all of this to sink in.