Saturday, February 26, 2011

Saturday, February 26, 2011

Tonight's picture was taken in November of 2003. I almost forgot about moments like this until I saw this picture. Peter captured Mattie and I dancing together in the kitchen! As you can see Mattie enjoyed these dancing times a lot and it brought a big smile to his face and laughter. I absolutely loved his smile, because when Mattie smiled his eyes seemed to glimmer!


Quote of the day: She was no longer wrestling with the grief, but could sit down with it as a lasting companion and make it a sharer in her thoughts. ~ George Eliot

Peter, Karen, and I went to the Washington, DC Home and Garden Show today. It was held at the Dulles Expo Center. I can count on one hand how many times I have visited this expo center. The last time we were there Mattie was with us. We took him to a train show years ago and as Peter reminded me today, Mattie came home from that show NOT with a toy train, but with a big toy truck! Mattie was fixated on that truck throughout the show because it was big, opened up, and had mechanical parts. Peter and I tried not to give into toy demands when Mattie wanted them, because at the time we wanted him to understand that the world was bigger than what he wanted. Nonetheless, in retrospect, I am happy he got what he wanted that day.

While touring around the expo center, I felt someone tapping me on the shoulder. So I turned around, and I immediately recognized the face. It was Mike, one of the managers from Mattie's favorite restaurant. Mike knew Mattie when he was just a preschooler, and then of course helped us with Mattie when he had cancer. Mattie was always welcomed into his favorite restaurant no matter how he was feeling or looking. I will never forget this type of kindness, because I found it heart breaking at times going out with Mattie, since people would be staring at us. As if we had done something wrong to cause this horror, or even worse, that Mattie was abnormal and deserved a lot of space and separation from the rest of society. We met Mike's wife today and son, and we both laughed how we seem to travel in the same circles.

Despite there being crowds at the Expo center, it was very manageable. The crowd was calm and well behaved for the most part. What interested me about the show was the gardens. I was hoping for two things, the first of course was to see greenery and the second was to be inspired by the arrangement and types of plants. Some of the displays were lovely, but for the most part, the show was not what I was expecting. I did not feel like I left with any new ideas for gardening.

I snapped several pictures today, and what I liked about this garden was that the fountain was the centerpiece. In a way it reminds me of Mattie's fountains and how they are integral parts of our garden.

Tulips seem to signal spring to me. These beautiful red tulips seemed SO perfect, that I saw several people go up to them and touch them to verify that they were real. Indeed they were!

This may have been one of my favorite sights at the show. The rich and beautiful purple hyacinths just caught my attention and their fragrance stopped me in my tracks. It was the smell of spring!

The composition of color caught my eye and as you look at this picture it may seem like no one else was around me. That I was at a tranquil park. But there were people everywhere!

I snapped this picture on the way out of the show. The bench in the background of this picture just seemed like the perfect place to sit, relax, read a book, and to try to find peace.


We spent the rest of the day at home and we tuned into cooking shows and had a grand old time watching the show "chopped" and the "cupcake wars." After watching the cupcake wars, I concluded that there were indeed some cupcakes in the world that even I wouldn't eat! Karen heads back home tomorrow afternoon, but we have certainly tried to pack in several things while she was visiting this week.

Friday, February 25, 2011

Friday, February 25, 2011

Tonight's picture was taken in November of 2003. I am sure to the viewer, this picture looks like a toddler standing by a table holding a flashlight. But what you are unable to see is what followed. Mattie literally dissected this flashlight. He took every piece apart and then put it right back together. This was NOT unusual for Mattie. At a very young age he learned to use a screwdriver and other tools, to take things apart and then reassemble them. Not having any other children, I at first thought this was a typical skill. However, having an education in child development and observing other children Mattie's age, I realized this made Mattie rather unique. Mattie had the brain of an engineer. He just understood things spatially and creatively. My favorite dissections however involved his toy cars. He would have parts all over the place, and eventually he would find a way to get them all back together again.


Quote of the day: When we come into the present, we begin to feel the life around us again, but we also encounter whatever we have been avoiding. We must have the courage to face whatever is present / our pain, our desires, our grief, our loss, our secret hopes our love / everything that moves us most deeply. ~ Jack Kornfield


Karen and I picked up Peter at work today and headed to Georgetown University Hospital. We had a lunch meeting with Marianne. Marianne is the director of public affairs and media at the Hospital and has been instrumental to us as we try to learn ways to promote our Foundation's Walk on May 22, 2011. The ironic part today is we learned that Marianne was living in Schenectady, NY around the same time Peter and I were there attending college. It is indeed a small world and it is funny how we have traveled almost in parallel, and yet here again, it took Mattie to bring our worlds together. This is rather amazing if you think about it. It was a very helpful and productive lunch. However, being on campus and at the conference center, simply reminded us of Mattie. The whole parking garage brings us back to the time of treatment.

In so many ways, when I think about the torture we survived, it is hard to believe that was really us. In many ways our lives and world have become fragmented. I know I experienced cancer, but some days I have to block it out to manage. Returning to the scene of the crime in a way, always jogs one's mind, heart, and memories. I remember the exact location (outside near the parking lot) in which I learned Mattie's cancer was terminal. We drove passed that place today, and somehow I almost want to put a monument there to symbolize or memorialize the devastation that this particular spot on the pavement represents for me. Naturally that spot would only have significance to me, but then I contemplate how many other spots of devastation exist in total at the Hospital for me and so many other cancer families. Too many to count I am sure!

Later in the day, Karen and I went to visit Mary (Ann's mom) at her assisted living facility. Mary knew I was coming and she enjoyed meeting Karen. Mary values connections and has told me about several of her lifelong friendships. At the end of our visit, Mary told Karen that any friend of mine was a friend of hers.

Karen is aware of the fact that I visit Mary on a regular basis. However, until you really see what "visiting" entails, it is hard to fathom how difficult a job caregiving is. It takes great patience, understanding, and selflessness to sit for hours and chat and to help a person with their physical needs. Caregiving is NOT easy by any stretch of the imagination. I visit Mary because she is my friend and I care about her, and I also visit Mary because my goal is to try to give Ann some sort of break now and then. A break which is very needed because of the intense care that Ann provides her mom. None of this is earth shattering to me, because I watched my mom as a caregiver and dedicated my research to caregiving for older adults for many years.

It was very nice of Karen to tell Peter tonight, that if she ever lands up in an assisted living facility or nursing home, she wants me caring for her. Caring for others who can't care for themselves is something that I have always been passionate about and Mattie taught me the exact art of how to do this physically as well as mentally and emotionally.

This evening, Peter, Karen, and I went out to dinner at our local Chinese restaurant. It is equivalent to our Cheers, where everyone knows us. At the end of dinner, Peter and I opened up our fortune cookies, and we both had the exact same fortune. I truly feel this means something, especially since the fortune read: "You will have good luck and overcome many hardships."

Even while eating dinner, I think of Mattie. We sit at the same table when we visit this restaurant. It was "Mattie's" table. Sitting at the table reminds me of many dinners there with Mattie. Eating and building with Legos! Legos were ALWAYS the toy of choice whether well or with cancer. It is a strange feeling how I can feel Mattie's presence in a place, even though he is no longer physically with us. His memories are simply there.

Thursday, February 24, 2011

Thursday, February 24, 2011

Tonight's picture was taken in November of 2003. Mattie was sitting in a rocking chair that played music when he moved. He loved the whole concept of that chair. But one of the reasons I selected this picture is because Peter captured one of Mattie's favorite poses. Mattie and I loved being cheek to cheek with each other. Mattie's cheeks were so soft and tender, and as I reflect on this picture, I try to remember what those tender moments felt like.

Quote of the day: Great grief does not of itself put an end to itself. ~ Seneca (Roman Philosopher)

Despite going to bed after 2am, I was up before 8am, and felt compelled to do some Foundation paperwork before Karen and I went to a museum. It is fascinating how I sat down at the computer and for several hours was very productive. Somehow this week, maybe for the first time, I felt as if my work for the Foundation has really evolved and is taking on a full time nature. Which is most definitely what I have been striving for. This is a new identity for me, especially since I lost my two others ones... being a mom and being a traditional educator.

Karen and I spent a great deal of time today sitting in my kitchen and chatting. Though we are connected on email, obviously face to face time is quite different, so there is a lot to discuss and reflect upon. We even chatted about memories growing up together. It is interesting to hear about your life from someone else's perspective.

Based on an article I read in the Washington Post, I was interested in seeing the exhibit at the National Museum of Women in the Arts entitled, Eye Wonder. The exhibit is described in the following way, "Women have had a profound impact in photography since its inception. Eye Wonder presents more than one hundred photographs made between 1865 and 2004 that demonstrate how women have long embraced the subjectivity - and even quirkiness - of the camera's eye. Selecting subjects from skyscrapers to silverware, the artists have created compelling images that reflect their unique viewpoints and invite new interpretations."

Though I knew the general vicinity of where the museum was located, when I got off the metro, as is typical for me, I got disoriented. So a simple walk up the block, wasn't so simple. We landed up walking perhaps 8-10 blocks, and making one big circle, until I finally realized where the museum was. It was actually funny, if it wasn't such a sad commentary.

The museum is a very doable gallery to tour in a couple of hours. So we started on the top floor of the museum and meandered our way down to finally see Eye Wonder. They unfortunately would not allow photography in the Eye Wonder exhibit, otherwise I would have posted some interesting pieces on the blog tonight. However, the top floor of the museum was truly hysterical! Karen and I had more fun commenting on the art than actually viewing it. I posted two examples of what I am talking about.

As we entered one room in the gallery, all we could smell was rubber. There literally was a wall filled with cut up tires. The title of the piece is Acid Rain by Chakala Booker. All I could say was, OH MY GOODNESS! To me it looked like a pile of snakes!!!

As you can see here, this art piece is up for interpretation. So much so, that it is untitled, but created by Elizabeth Turk. To me it looked like noses from Sesame Street characters attached to the wall.

The irony is that I think women have contributed a great deal to the arts, yet attending this exhibit was not a good representation of the talents out there.

One of the photos in the Eye Wonder exhibit, was a picture of 6 little boys sitting around a table in a daycare in Russia. The boys had very short hair cuts and had sullen looks on their faces. Somehow I was struck and disturbed by the photo. Karen said that most likely I felt this way, because the children all looked ill, or like Mattie on chemo. I think that was true. The children looked unhappy and as if all the life and hope had been sucked out of their little bodies. It is actually a haunting picture and remains with me this evening.

At the end of the day, I can say that we got our exercise walking around today, and had time to chat, and make dinner together. Peter joined us after a long day at work, and we shared with him some of our funny sightings from the day. I think he definitely needed a good laugh.

Wednesday, February 24, 2011

Wednesday, February 24, 2011

Tonight's picture was taken in November of 2003. We have various pictures of Mattie in our kitchen sink over the years. This was one of his favorite places. He loved sinks and tubs, which were COMPLETELY empty of water. He seemed to appreciate these cozy places and as you can see he had a big smile on his face in the process.

Quote of the day: Tearless grief bleeds inwardly. ~ Christian Nevell Bovee

I began my day by walking 2.5 miles with Ann. It was a deceptively cool day, but it was nice to be outside and in the sunshine. Later in the day I headed to Union Station to pick up my lifetime friend, Karen, who was coming into town from NYC. Karen is staying with us through the weekend while her school is on winter break.

Karen and I had a chance to chat and catch up this afternoon, and she also got to see our home somewhat cleaned up. She noticed my kitchen table immediately and of course the lack of piles. The last time she stayed with me, which was in May of 2010, she could recall that there were piles everywhere. But as Karen likes to say, it always looked organized. Perhaps organized chaos.

Later in the day, Karen and I headed to Ann's house for our first official face to face Foundation Walk planning meeting. With around 15 walk committee members present, we had a very successful and productive meeting. It is amazing to look around the room and see all the people who are connected to us because of Mattie. Many of the people in attendance I met either at Mattie's preschool or kindergarten, and supported us through Mattie's cancer, and continue to go above and beyond. For that we are truly grateful. We spent a portion of tonight's meeting updating the team about the Foundation's happenings and mission, and then discussed the theme for this year's Walk and how it ties into our mission. As so many of you know, our mission involves education, awareness, and advocacy for pediatric cancer. However, our main focus is to address the psychological and social needs associated with pediatric cancer care and survivorship.

This year's Walk theme is FACES OF HOPE. We have invited two teenagers who are osteosarcoma survivors to speak at the opening Walk ceremony this year. They are Lauren Chelenza and Noah Grove. I will be telling you more about these special people shortly. However, I am thrilled that they will be with us this year and I believe they are true visions of hope.

I also announced to the planning committee that all funds generated from this year's Walk will go to Georgetown University Hospital's Childlife program, to hire a part time childlife specialist who will assist children and families on scan and procedure days. Scanning days for a child with cancer can be unbearable for many reasons. The reasons are so numerous but here are the top candidates of stress on scan days: 1) Typically children are sedated for scans, and therefore can't eat the entire day until the procedure is done. So hunger is a factor. 2) In addition, there is a great deal of waiting around until the scanning equipment is available, so this means that until children are sedated they have a great deal of nervous energy that needs to be channeled in play. 3) For parents and caregivers, waiting around for testing, while trying to entertain your child becomes an impossible and exhausting task. Especially when the fear, stress, and anxiety build over what the scans will reveal. Remember that scans are done periodically to assess for the effectiveness of treatment and to look for disease progression. 4) After the scanning procedure is over, then the waiting game begins, until you receive the testing's results. I assure you even waiting five minutes for results feels like an eternity when it involves the health of your child. Many times the results are revealed on the same day as the test, and having to hear this news alone is daunting. I can recall scan days vividly and I remember the sickening feeling that would come over me when I saw Mattie's doctor walking into clinic to share the scan results with me. In Mattie's case, each scan result was more grim than the one before it. I was fortunate that I usually had Linda (Mattie's childlife specialist) or Ann with me. But not every family is this lucky, many go through this alone.

Therefore, our Foundation can't think of a more meaningful psychosocial resource to provide Georgetown University Hospital than the hiring of a part time childlife specialist. This specialist will have access to helping hundreds of children and families, and I know from first hand experience, our family couldn't have managed without Linda, Mattie's childlife specialist. However, there is only one Linda and she can not accompany all the children and their families on each and every scan. It is our Foundation's goal to try to meet this psychological and emotional need through funds generated at the Walk. The Walk planning committee felt very empowered with this mission, and I am happy to report that we are well on our way to having a successful Walk.

I would like to end tonight's posting with a message I received from a former student. Ariel has been inspired by Mattie's battle and story, and decided to go back to school to become a HEM/ONC nurse. As I told Ariel, this career decision is a nobel one and one that requires a person with great inner strength, character, and compassion. All qualities Ariel possesses. I was a very fortunate educator, because I had very special students. Students who wanted to learn and students who wanted to make a difference and help others. This is the one aspect of teaching I greatly miss. I gave a lot of myself to teaching, but I found when I had students like Ariel, it all seemed worth it. Ariel wrote, "I completed another semester of nursing school (22 credits), which means that I have 42 credits down and 18 to go for this portion of the program! Since September, we have been rotating through 5 different concentrations, which are each 5-week intensive courses. I completed my pediatric rotation at the end of the fall semester and for my clinical I was assigned to the HEM/ONC floor at CHONY. While it was definitely challenging to see so many children suffering from cancer, the experience solidified even more that pediatric oncology is the specialty for me. I want to do everything I can to help these children and their families going through the horrific battle. I felt like everything during this 5 week experience made me think of Mattie. I was reminded of all that Mattie suffered through, which brought about a lot of emotions for me. At the same time, I couldn't help but remember what a brave and incredible boy Mattie was, who inspired me to choose pediatric oncology as my specialty. As I've told you before, I can't even imagine the pain that you and Peter continue to feel on a daily basis. As others have told you in the past, nobody can tell you how to grieve or how you should feel. You continue to amaze me with all that you do and your ability to continue to pour out your honest thoughts and feelings on the blog. While it can be difficult to read about how much you and Peter hurt, I know this is your reality and I appreciate your openness and willingness to continue to share it with all of us. I have learned many important life lessons through you and the blog. I also wanted to thank you for the sweet note you wrote to me on the foundation letter that was sent out. The magnet for the 2011 Mattie Miracle Cancer Foundation Walk is hanging on my fridge. PS: When I was walking near school, I saw what appeared to be a HUGE bug on the sidewalk. I couldn't believe my eyes, and then realized it was a plastic bug. It immediately made me think of Mattie and I'm sure he would have gotten a kick out of my reaction!"

Tuesday, February 22, 2011

Tuesday, February 22, 2011 -- Mattie died 76 weeks ago today.

Tonight's picture was taken in November of 2003. We took Mattie to a fall festival in Leesburg, VA, and as you can see he was fascinated by the miniature pumpkins. Mattie loved pumpkins! Actually everything about pumpkins.... from their color, their texture, and most definitely their taste. In fact, before I had Mattie, I disliked anything pumpkin flavored. However, after making pies, muffins, cookies, and soups from the insides of Mattie's pumpkins, I began to love the taste as much as he did. Somehow pumpkins will always remind me of Mattie.


Quote of the day: Where grief is fresh, any attempt to divert it only irritates. ~ Samuel Johnson

I began my morning with a phone call. It was our friend Maria who is our leasing manager in our complex. We have known Maria for over 15 years, so she knew me before I was pregnant, and she most certainly watched Mattie grow over the years. Maria is an avid blog reader, and knew that we have been cleaning out our home for about a month now. On the phone, she asked if she could come up and see me because she had a gift to give me. I most certainly wasn't expecting that!!!! When Maria came over, I invited her to sit in the kitchen with me. The kitchen has become my new favorite place to sit. It is small but cozy, and Maria was my first guest to sit there with me since Peter got me the new table this weekend. As I opened her gift, I was so thrilled to see this beautiful red glass hummingbird feeder. I took a picture of this lovely gift for you to see. We had many hummingbird sightings in the summer of 2010, and now Maria is helping me to capture those special moments this summer right by my kitchen window. It will make sitting in the kitchen even more meaningful. One of the wonderful things I am looking forward to in the spring is to sit in the kitchen with the window open and to be able to listen to Mattie's fountains outside on our deck. Now I will have the fountains to listen to and the hummingbird feeder to watch. Needless to say Maria's visit and gift truly started my day off on the right foot. Here is what Maria's note said, "I wanted to thank you for continuing to write in your blog, for sharing so many adorable photos, happy memories, and to for sharing your knowledge in grief counseling. It is an enormous task going through each closet and room, and donating items to Goodwill, and I am so happy of your accomplishments. Today is Tuesday, and I am hoping to bring some happiness to your day. I bought a hummingbird feeder for you. It is the neatest thing. I thought a good place for it would be outside your kitchen window. It is pretty amazing once it is up. Be patient, and soon you will have a new friend to watch. I think Mattie would have gotten a kick out of it too. I chose red, for passion and love, which you have demonstrated everyday in your blog."
 
This afternoon, Peter and I headed over to the offices of Mercury, LLC (a high stakes public strategy firm). We are working with Brett Thompson, Managing Director, at Mercury, on developing a legislative agenda for the Mattie Miracle Cancer Foundation. I am not sure how we were lucky enough to get connected with Brett, but we are so grateful he is willing to share his time, expertise, and resources with us. Traveling around on the Hill can be challenging and tiring even on the best of days. I have certainly done this numerous times as a mental health advocate, but never advocating for something that was so near and dear to me. That actually makes the experience very different. However, Brett has a very charming, calming, natural, and competent demeanor that really made the hours walking and talking much easier. It is not easy to reiterate your personal story four times in a row. I noticed one thing about myself today. After about the second time telling the story, I was mentally tired. That has never happened to me before on the Hill, and the only thing I can attribute this to is the sheer fact that we personally battled cancer and lost the battle and lost our child! I was impressed with Peter's passion, his explanation of things, and Brett's help and guidance as we were discussing the legislative process and next steps in the meetings. 
 
Our mission today was to introduce congressional staffers to our Foundation and to bring to their attention the psychological and social needs of children with cancer and their families. We told our story, we gave examples, we discussed the current legislation out there, and then we proposed their collaboration with us as we advocate for the inclusion of language for psychosocial awareness, education, and support in pediatric cancer care legislation. All FOUR offices were very interested in our discussions and

we look forward to our continued dialogue and discussions.
So I am happy to report that today was a success. We successfully reached out and made connections with legislators and what struck me immediately was each staff person we talked to was somehow personally touched by cancer. Which may explain their passion to work on health care legislation. One staffer emailed me us later in the day and commented to us that she knows today had to be hard for us, to relive our story countless times. A very sensitive and perceptive comment! Each staffer took their time to listen to us, provide thoughtful commentary, and to ask questions. In addition, they all had insights into our next steps and how they could be of help to us. So from our perspective, it couldn't have been a more positive first visit! Below you will find some pictures that Brett kindly took of us throughout our travels today! Brett knows I am a BIG picture person and that I never travel anywhere without my camera!

Peter and I with
Laura Bunten  at Congressman Michael McCaul's (R-TX) office



 
 
 
 
 
 
 
 
 
 
 
 

Peter and I with Ray Thorn at Congressman Chris Van Hollen's (D-MD) office



 
 
 
 
 
 
 
 
 
 
 
 

Peter and I with Josh Teitelbaum at Congressman Steve Israel's (D-NY) office

Peter and I with Erin Ryan at Congresswoman Jackie Speier's (D-CA) office

Monday, February 21, 2011

Monday, February 21, 2011

Tonight's picture was taken in November of 2003. It is actually a follow up to a picture I displayed two nights ago. It is a close up of Mattie with a goat. However, in this particular picture you can see Mattie's reaction to touching the goat's fur on its face. It was somewhat prickly and NOT what Mattie was expecting.

Quote of the day:  He that conceals his grief finds no remedy for it. ~ Turkish Proverb


I received an email today from my lifetime friend, Karen. Karen is actually coming to Washington, DC this Wednesday. She is a NYC school teacher and her school is now on winter break. Karen commented in her message this morning that she liked the farm photos I have been displaying this week on the blog. As Karen knows, I LOVE cows. So much so, that many years ago, my mom adopted a cow for me in upstate New York. Daisy, my cow, was sickly and needed medical attention and care. I had Daisy's picture up in my kitchen until recently.

Karen reminded me of the trip she took with Mattie and I to the National Zoo. That day at the zoo, Mattie seemed agitated and grumpy. Mattie had those days, probably not unlike some toddlers, but Mattie's moods were intense. She recalled how he was so mad at us, that he literally zipped his jacket right over his head so he did not have to hear us talking. I frankly forgot about that, until Karen mentioned it. There were many days during Mattie's development which were challenging and difficult. This was even before cancer struck. In fact, as I was going through sympathy notes last weekend, I came across a beautiful note Mattie's speech therapist wrote to me a month after he died. I met Donna soon after Mattie's second birthday. Mattie only spoke about 4 to 5 words by age two, and my pediatrician referred me to Donna. I knew Mattie could hear me and I also knew he understood exactly what I was saying. However, without being able to talk and express himself, Mattie spent many of his early days very angry and would have ballistic meltdowns. You had to experience one to believe them. Mattie could have six to ten of these in any given day. At times I felt so emotionally raw. The first day he met Donna for a speech evaluation, he punched her in the face and practically broke her glasses. Fortunately Donna took a liking to Mattie and I, and signed Mattie on as her patient. Donna was my saving grace! She saw all the behaviors I had been trying to point out to the pediatrician for years. Mattie's pediatrician is a gifted medical doctor, but like so many medical doctors doesn't understand the psychological ramifications of parenting or children's issues for that matter. Donna however did. In addition, during one session Donna also observed Mattie beating up on me and giving me an extremely hard time. She literally pulled him into another room, and separated us for 30 minutes. Needless to say, I was crying hysterically and was frazzled beyond frazzled that day. This behavior wasn't only toward me, it was how Mattie socialized with the world. Which is why no little person wanted to play with him and why we never could attend a gymboree class with success or preschool for that matter (until we found Resurrection Children's Center, another saving grace in our lives).

I am telling you this because our history together was always challenging, but one thing was for certain, I believed in Mattie's potential and also was always by his side. I think we grew together and through these challenges became extremely close. We understood each other and defended each other all the time. Donna also referred Mattie for occupational therapy (OT), and Kathie our OT became the next vital person in our lives. Both Donna and Kathie worked with us for over two years. So by the time Mattie entered kindergarten he was a different child. He was at peace with himself and his skills. Which is why developing cancer was SO bitter. No child should get cancer, but Mattie had already overcome a great deal before his diagnosis. While other toddlers and preschoolers were out playing and having playdates. Mattie was going through speech, occupational, and play therapy. All I can say it that early interventions were the key to Mattie's successes, and as Donna always said to me.... having Peter and I as his parents helped! In fact, Mattie's pediatrician once said to me, "Vicki NOT all parents can handle a Mattie. Mattie chose the right mom." I hold onto these comments dearly now, since they are all that I have left.

Today was another day of cleaning and reorganizing. We dropped off another 12 bags of items to Goodwill! I am finally beginning to see our home again, a home that had been abandoned for years (starting on July 23, 2008 - diagnosis day)! Mattie's things are pervasive throughout our home and his things seem to be integrated among mine! Today while cleaning things in the kitchen, I found Mattie's penny passport book. Mattie collected stamped pennies from each of the places we visited. It is quite an impressive book and it immediately reminded Peter and I of all our adventures together. Needless to say, I looked at the book, and put it right back to where Mattie always kept it! There are some things I still can't touch. As things are being cleaned out it becomes more and more evident that Mattie no longer lives here. Our living room and dining room remind me of the days when Peter and I were just married. The only difference of course is we have pictures and art pieces created by a little one everywhere.

Sunday, February 20, 2011

Sunday, February 20, 2011

Tonight's picture was taken in October of 2003. Mattie was hesitant to approach cows, pigs, goats, and llamas, yet he had no problem with chickens and roosters. As you can see, this poor rooster got a run for his money. Mattie wasn't trying to scare him, he just wanted to get a closer look. Needless to say these farm memories are quite vivid and capture Mattie's spirit and love for being outside.


Quote of the day: There is no grief like the grief that does not speak. ~ Henry Wadsworth Longfellow


When I woke up this morning, I found that Peter was already up and had just come back from shopping. To my surprise he bought a little round cafe table and chairs for our kitchen. I have always wanted such a table for our kitchen, because I knew it would make our space more usable. I was excited to have this new addition, but what we had to do to get the table in the kitchen and set it up was less than pleasant. I had to go through everything stored under and on top of our old kitchen table first. This was a VERY challenging and upsetting task. Mainly because most of Mattie's art work and school work were surrounding this table. So I had to go through every piece, one by one, and save those things that were most precious. In the midst of going through these piles, I came across a picture frame I bought. It was a frame in which I planned on displaying a picture of Mattie for each year he was in elementary school. Needless to say, that frame was empty and it just reminded me of the future loss in our lives.

After this nightmare of a project, I needed a break and Peter and I ventured out for lunch. While I was getting dressed to go out, I decided to print out a solicitation letter I wrote to local businesses requesting gifts in kind for our Walk raffle. I am aware of my strengths and my weaknesses, and selling things is typically not my forte. But I figured I had to start somewhere. So when we arrived at the Cheesecake Factory for lunch today, I asked to speak to the manager. I handed him our letter and told him about Mattie and the Foundation, very briefly. To my surprise, he responded positively and will be sending a generous gift certificate in the mail to us. Somehow his demeanor has inspired me to continue my solicitation process.

Before heading home, we stopped by Goodwill and donated ten more bags filled with all sorts of things. It was important for us to do this, since I was going to be cleaning out another closet this afternoon and needed Peter's car to be empty to handle the next load of items. I spent about three and a half hours this evening going through a closet that I jointly shared with Mattie. I commented to Peter that I couldn't believe my clothes closet had gotten this out of hand, but when I stopped to reflect on why it made sense. My closet was in Mattie's room. Therefore, when he was well and was sleeping at night, there was no way I was going to go into his room to organize a closet. So in essence the disrepair of this closet is the result of many, many years of neglect.

In so many ways, cleaning out this closet was like a history lesson, or a walk through time. I had items in it from when I was in college all the way up to the present time. I even found several outfits I wore when I was pregnant with Mattie in there, and I distinctly recall wearing them thinking about the excitement of having a baby. Unfortunately for me, unlike other moms, having a baby is linked to cancer and grief.

I found other items of Mattie's in my closet such as his onesies and shoes. Most of which I sealed up and stored right back in the closet. However, we accomplished a great deal with the kitchen and this closet today, but I have to admit a full month of this cleaning out process has been tiring, exhausting physically and mentally, and it has really shown me the aftermath and chaos of living through Mattie's cancer battle.

Saturday, February 19, 2011

Saturday, February 19, 2011

Tonight's picture was taken in November of 2003. This week's blog pictures seem to highlight Mattie's numerous trips to farms. I still remember taking this picture, and what I loved about this photo and STILL do, is the connection this goat and Mattie seemed to have had with each other. Mattie's love for animals, nature, and being outdoors developed at an early age, and in so many ways animals teach us a lot about ourselves. Unlike humans, domesticated animals are very simple. They don't seem to have the emotional baggage we do and therefore If you care for them and love them, their loyalty and love are greatly reciprocated. Mattie seemed to understand this right from the beginning, which may be why Mattie's initial friends when he was a toddler were animals, NOT people.

Quote of the day: My grief lies all within, And these external manners of lament Are merely shadows to the unseen grief That swells with silence in the tortured soul. ~ William Shakespeare

Today was a busy day for Peter and I. We assisted Ann manage her weekend schedule with her children, while Bob was out of town. Having once been parents, I believe, this gives us the insights to know exactly what needs to be done in certain circumstances. When I help Ann, I try to remember all the things I would have wanted help with when balancing a family. They are NOT glamour tasks, but tasks none the less that must get done for a household to run smoothly. Such as laundry, trash removal, cooking, and cleaning. These are not things Ann expects me to do when I am over helping but I suppose once a mom always a mom on that front.

This afternoon, I had the opportunity to spend some time with Ann's mom, Mary. Mary and I chatted for several hours and I assisted her with dinner. While we were talking she literally said to me, "I am going to miss you." She wanted me to know she considers me a special friend and she appreciates all the time and care I give to her. Naturally at first I was confused by what she was saying to me. Because my initial response was, "I am not going anywhere, so you don't have to miss me." But Mary's comment was more meaningful and complex than what was presented on the surface. She was trying to tell me that in a way when our time together on earth is done, she will miss our connection. She feels I am her ally, that I understand her feelings, and that she can trust me.

Needless to say I was deeply touched by Mary's comments and I value the fact that she can verbalize how she feels about our friendship. A friendship which she believes she has had with me for years. However, Mary and I only met each other in December of 2008, yet perhaps losing our sons to cancer is a connection that transcends time.

In the midst of helping children and Mary, Peter and I also worked on Foundation Walk materials. We have been very productive this week, and it is ironic that when Ann saw our Walk advertisement for this year, she was caught off guard by not seeing Mattie's face attached to the document. This year's walk theme is Faces of Hope. Mattie will always be my face of HOPE, however, I am well aware of the fact that most people in the non-cancer community wouldn't view a little boy who fought a heroic battle with osteosarcoma and then died as hopeful. To me, Mattie is the ultimate face of hope. Because even through intense pain, being disfigured and disabled from cancer, and left with a host of psychological ramifications from cancer, Mattie still smiled, he still returned to the hospital willingly, and he still loved his friends and life. If that doesn't symbolize HOPE I am not sure what does. There will be other ways though for us to honor Mattie at the Walk, and I remind myself that Mattie drives and compels us to host this public awareness event to help meet the psychological and emotional needs of children with cancer and their families.