Saturday, September 7, 2013

Saturday, September 7, 2013

Tonight's picture was taken in October of 2007. This has to be one of my favorite photos of Mattie. I remember taking this photo as if it were yesterday. We took Mattie to Butler's Orchard in Maryland and he rode on a tractor out to a pumpkin patch and literally picked this big cutie right off of its vine! Mattie's big smile I think says it all. He was very proud of his selection. Mattie gravitated to bold and bright colors, orange being one of them! Which is why orange is our official Mattie Miracle Cancer Foundation color.


Quote of the day: Scars have the strange power to remind us that our past is real. ~ Cormac McCarthy


As I mentioned in last night's blog, President Obama has decided NOT to light the White House up in GOLD this month. A petition was signed by many childhood cancer advocates pleading with the President to consider acknowledging childhood cancer awareness in a similar fashion as to how he acknowledges breast cancer awareness in October. In October there is a huge pink ribbon draped over the White House and at night there are pink lights everywhere. Keep in mind that President Obama is the same person who signed the law declaring September as National Childhood Cancer Awareness month. But what does that really mean?! The Internet is AGLOW over his decision to not visually support the gold campaign. Many parents, families, and childhood cancer advocates are disgusted by something that in all reality is a VERY simple gesture and request. A gesture that wouldn't cost much but would be giving recognition and promoting awareness to a national health crisis.

I included a link to an article written by a parent who lost his daughter to cancer. We know Jonathan, he was one of the parents who spoke at the Mattie Miracle Childhood Cancer Psychosocial Symposium on Capitol Hill in March of 2012. This is Jonathan's voice below, but he represents the voice of MANY!

Thanks for Nothing, Mr. President
http://www.huffingtonpost.com/jonathan-agin/thanks-for-nothing-mr-pre_b_3854194.html

Now here is the irony, though Washington, DC (our Nation's capital) is not glowing in GOLD, the city of Boston has risen to the occasion. Check out this video below. The famous Prudential building and the Zakim Bridge in Boston are GLOWING gold for the month of September. Good for Boston!!! Maybe Washington, DC could learn a thing or two from Beantown.

http://www.wcvb.com/health/Pru-Zakim-awash-in-gold-in-honor-of-young-cancer-victims/-/9848730/21749774/-/9fswcez/-/index.html

This proves to be a very challenging weekend for Peter and I as Mattie's fourth anniversary of his death is tomorrow. I knew we needed a plan today, otherwise we would have remained in an absolute funk. So we went on a day trip to Frederick, Maryland. We haven't been to Frederick in 13 years. It is only an hour outside of Washington, DC, but life happens, and many things prevented us from visiting this historic town sooner. When Peter and I got to the town, I did not recognize it at all. In so many ways it lost its beauty, charm, and historic nature. Nonetheless, we made the best out of it, toured the main streets, visited antique stores, and found a lovely restaurant called Firestone's Culinary Tavern. It lived up to its name. Today was a glorious weather day and getting outside, moving around, and staying busy for part of the day was the best things for us to do.

I would like to end tonight's posting with a message from my friend and colleague and then following that, I reposted part of the blog from September 7, 2009. I think it captures what our world looked like four years ago today. It was a day of absolute desperation, fear, pain, and heartache. When I wonder why Peter and I are sometimes the way that we are now, it doesn't take long for me to understand why after reflecting back on my own words. Words which captured our journey from the day of diagnosis forward.

My friend and colleague wrote this to me today. She said, "You, Peter, and Mattie have had and continue to have a LONG reach. Mattie's blog has reach for adolescents, moms, dads, professionals, and many, many people. The Blog should give people pause: be kind, love others, don't be self-centered, give back, give thanks for the moment, tomorrow is not promised, more research needs to be done, everyone should matter, don't assume, have empathy for other, and nothing is guaranteed. I KNOW THAT YOU KNOW ABOUT ALL OF THESE LESSONS. I just hope you know you are still teaching."

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MATTIE'S BLOG --- SEPTEMBER 7, 2009

Our day started out with a sad scene. Mattie's fish, the special gift my parents got Mattie yesterday, died! I knew this was an ominous sign today!

Mattie had a very difficult start to the day. His blood pressure has been dropping and is dangerously low, and he had a coughing fit, which left him gagging and unable to catch his breath. He was deathly scared, and when Dr. Shad and Kathleen (Mattie's outstanding HEM/ONC nurse) saw him, they mobilized into action. In reality what happened next moved so fast, it was almost a blur. Mattie was in minutes being pumped up with pain medications and Versed (for anxiety). Now that I can reflect on the morning, I am so thankful we are in the hospital. Because Mattie couldn't possibly be cared for humanely at home based on the symptoms he is presenting. It is ironic that Mattie seemed to know this, and had a better feeling for his condition and his decline than Peter and I. Once Mattie received all this medication, he asked if I could snuggle with him, which I happily did. However, Mattie is being kept in a comfortable state, so therefore he really isn't talking and spends a lot of time sleeping. The Mattie we knew is NO longer!

Dr. Shad came to the hospital early because she felt that the end was near for Mattie. She stayed at the hospital all day, and we had a great deal of support from the HEM/ONC nurses (Kathleen, Tricia, and Miki). We were also surrounded by our THREE angels today: Ann (our angel of HOPE), Linda (childlife specialist and our angel of caring), and Debbi (our sedation nurse angel). They all came to support us and Mattie. My parents sat with us as well, and this whole scene of watching Mattie slowly dying is heart wrenching and at the same time surreal. How can my healthy, active, bright, and spunky son be dying? I see it happening, but it is SO hard to accept!

Eating wasn't easy for me today, but I had a lot of people around making sure that I actually did. Ann took me outside to eat something, and I needed that break, because sitting and watching death, and the death of Mattie almost takes your breath away.

Peter and I spent a great deal of time today monitoring Mattie and also talking with him. In fact, when everyone was visiting, we had solemn moments, but also moments of laughter. Laughter because Mattie was a very humorous fellow! Kathleen told me that the nurses love Mattie, but they also love us. That Mattie has left a legacy, and his love will always live on within us. Mattie did not go to school this past year, but in a way he went through the hardest school of all. The school of cancer, which shows you the most vulnerable and raw sides of life. In fact, it has left me so raw, that I emotionally am not the same person anymore.

Mattie's nurses all came in tonight at their shift change to kiss and say good-bye to Mattie! It was very touching. Kathleen told me that even though Mattie isn't awake, he can hear us, and that he worries about us and is holding on because he knows we do not know how to say good-bye to him. So tonight, Peter and I mustered the energy to talk with Mattie together. We told him we loved him, were proud of him, that he did a great job fighting the cancer, but now he is in control and can decide when he has had enough and wants to rest. That we will be okay, and that we will always, always love him. We told him that we couldn't have asked for a better son, and that he was going to a place where he would be at peace, able to run and play, and meet up with family members and friends who love him but whom he has never met. My sign off tonight, as it always is to Mattie was, "Una Moon loves Mooshi Moo." Mattie coined the nickname, Una Moon for me, and he is my Mooshi Moo.

It is hard to say how long Mattie will be with us. It could be hours or days. But it is no longer weeks! His whole disease has been one crisis after another. His cancer required three major surgeries, 11 months of chemotherapy, and intensive physical therapy. However, there was NO break between treatment and recurrence. In addition, even death is not an easy process for Mattie. It has hit him hard and hasn't given us the chance to talk as a family. This year has left me shell shocked, questioning everything about life and the future, and the true purpose for our lives. Mattie is being kept comfortable, which is a blessing, because the sounds coming out of his body and lungs are frightening. I doubt we will sleep at all tonight! I am saddened that Mattie will be unable to go on a planned beach trip that the Lombardi Clinic arranged for us on September 13 through the Foundation, Believe in Tomorrow. It wasn't meant to be clearly. One thing I do know is I hate Osteosarcoma with every fiber of my being. I have seen Mattie suffer way too much this year, and this suffering will always remain a part of us.

My head is pounding tonight, my heart is heavy, and I am truly and deeply saddened over the pending loss of Mattie. Ann, is headed back to spend time with us at the hospital this evening, and despite losing her brother to cancer almost two years ago, I appreciate and value her commitment, support, and love she has for us in order to be able to walk through this with us now.

Friday, September 6, 2013

Friday, September 6, 2013

Tonight's picture was taken in September of 2008. I think this photo says it all! I was wiped out and Mattie was UP and had this impish grin on his face! In all reality there was just no way to keep Mattie down. Cancer, chemotherapy, and surgery tried very hard, but his spirit always came shining through. He was a miraculous little fellow.


Quote of the day: Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light. ~ Brené Brown

Linda, Mattie's Child Life Specialist, sent me this photo today! What is it of? It is a close up of Mattie's oak tree at his school. During our recent Foundation Walk in May, Linda had the kids in attendance decorate butterflies for Mattie's tree. A butterfly in honor and remembrance of Mattie! I knew that such an activity was taking place, but I can't think of a better time for her to display these finished butterfly products than during Mattie's fourth anniversary of his death. Somehow I suspect Linda planned this in advance. Needless to say, I am deeply touched by her thoughtfulness, caring, and compassionate nature. But then again, I am NOT at all surprised by her actions. I experienced Linda under the worst of circumstances. From day one, Mattie connected with Linda and he truly loved her. Linda understood Mattie and was an amazing advocate for our entire family. Without Linda, I would have absolutely cracked up. I love Linda for the skills she has, for the love she brings to her job, for going the extra mile with all her patients, and of course for loving my son. The love continues to be shown as is evidenced by these butterflies hanging on Mattie's tree!

This afternoon, I was invited to lunch by my friend and colleague. Denise and I met in graduate school and her daughter, Marisa assisted us with Mattie in the summer of 2009, after his cancer treatment was over. Of course Mattie wasn't home long that summer since his cancer spread everywhere only six weeks off of chemotherapy. Denise's entire family is well connected with us and they assist the Foundation in SO many different ways. They helped us in February when we went to Huntington Beach, CA for a National Conference in which we launched a psychosocial think tank, and they will be assisting us once again in February 2014, when we attend another national conference in Tampa, FL.

In so many ways, today's lunch was therapeutic. Denise and I openly talked about loss, grief, and trauma. Since Denise went through Mattie's battle with us and she is a daily blog reader, I didn't need to bring her up to speed on our story or my feelings. She is part of our Mattie community and has her own thoughts and emotions about the loss as well. Today's meeting was a gift. The gift of eating lunch outside (since today was a glorious weather day), having wonderful food (since I am motivated by food!), and most of all having the opportunity to talk honestly about the death of Mattie, the day he died, and the multiple losses that have occurred as a domino effect from losing a child to cancer. I threw a lot at Denise today, but she did not miss a beat. I think another gift she gave me besides of course listening (which is huge), was the gift of telling me how important the blog is. It isn't just important from a way to keep Mattie's memory alive, but it is important from a clinical sense. The blog can be turned to by mental health clinicians to get an up close and personal viewpoint of how to help a parent with grief. There were many aspects about today's lunch that will remain with me always and I learned that maybe I don't need a large gathering. Instead, meaningful one on one connections like I had with Denise today are key to coping with anniversaries.

As I mentioned last night, September is National Childhood Cancer Awareness month. There are campaigns all over the country to encourage people to wear gold and also to light their homes up in YELLOW. In essence changing your current white light outside your home to a yellow light bulb in support of childhood cancer. In some places this YELLOW light campaign has really taken off. I received an email today from one of the childhood cancer coalitions that we follow and they gave us an update about the petition that citizens made to LIGHT the White House GOLD in the month of September. Needless to say the White House turns PINK in October, but they won't consider GOLD for September. Fascinating!!! You can read the link for yourself below.

Official The White House Response to Light the White House gold for the month of September to honor pediatric cancer fighters and bring light to the cause.
https://petitions.whitehouse.gov/response/fighting-pediatric-cancer

Thursday, September 5, 2013

Thursday, September 5, 2013

Tonight's picture was taken in September of 2008. Mattie was battling cancer for a month by that point. On that day, I took Mattie back to his preschool to spend time with a preschool buddy and his teachers. We all met on the playground that day. The ironic part of this photo was this SLIDE! When Mattie first entered preschool he was deathly afraid of going down a slide. However, within that first year, he over came that fear and would zoom down the slide like no tomorrow. Even with a broviac attached to his chest (a catheter which enabled chemotherapy and other medicines to go directly into a central vein in Mattie's body), Mattie gravitated to the slide, he enjoyed running around on the playground, and for that moment in time he seemed like a "normal" kid.

Quote of the day: We ourselves feel that what we are doing is just a drop in the ocean. But the ocean would be less because of that missing drop. ~ Mother Teresa

We are now five days into the month of September. A time of year when children go back to school and for many in seems like this marks the end of the summer season. It is rather ironic that a month that is associated with children returning to school, learning, and engaging with friends and other activities would be chosen as National Childhood Cancer Awareness Month. In fact, I really wonder just how many people know that September is National Childhood Cancer Awareness month? Honestly take a poll of those around you?! I bet 80% or more of the people you ask will just look at you perplexed!

With that said, if you ask anyone what a pink ribbon symbolizes, chances are they will immediately say...... Breast Cancer. October is breast cancer awareness month and you will see PINK ribbons everywhere. I mean everywhere at Macy's, at Football games (I remember glancing at the TV last year and seeing professional players wearing pink socks, helmets, etc.), on the sides of yogurt containers and the list goes on. I take no issue with PINK. It happens to be one of my favorite colors and certainly it is a campaign that has brought great awareness to breast cancer. Awareness, getting diagnosed, and treated early are all crucial regardless of the type of cancer and the age of the patient. But one has to wonder why the GOLD ribbon hasn't taken off in the same fashion. Gold is the official color of childhood cancer. I certainly know many organizations are working very hard on their gold campaign.... "Gold being the new pink!"

I am not sure where I am with the gold ribbon debate, but I do know that understanding the facts are important regarding childhood cancer. I attached two links below. The first link was written by a mom who lost her child to a brain tumor. Her 8 brutal truths about childhood cancer are spot on! She mentions the American Cancer Society's lack of funding to childhood cancer, but unfortunately this is also true for the National Cancer Institute (with less than four percent of funding going to childhood cancer a year!). It is a systemic problem, most likely because of the number of patients diagnosed with childhood cancer in a year. Though 14,000 children are diagnosed with cancer a year, this number is SMALL in comparison to the adult population. Also there are many different forms of childhood cancer, which makes learning about each one very difficult. This is unlike breast, colon, and prostate cancers which impact thousands of adults a year. Putting it further into context, there are NOT many kids diagnosed with multifocal synchronis osteosarcoma (like Mattie) in a year. In fact, one of Mattie's oncologists said that a case like Mattie's is seen maybe once every decade around the world, not even in the US. It's rare. So how do you study such a rare disease? In essence the answer is you really don't, and it is hard to fund, because what are you funding? You don't have much of a sample patient size to pull from! 

Childhood Cancer Awareness Month: 8 Brutal Truths to Choke On
http://www.huffingtonpost.com/suzanne-leigh/childhood-cancer-awareness-month-_b_3837486.html

The second link, which always makes me LAUGH is the president's proclamation that September is National Childhood Cancer Awareness month. I particularly love when I hear about the "great strides" and "extensive research funding" that are being made! These are words, not actions, and in all reality these words bring relatively little comfort to those battling cancer and especially to those who lost a child to the disease. I suppose we need to start somewhere and in all reality starting somewhere begins with each person reading this blog. You are the change agents! You know September is Childhood Cancer Awareness Month, so tell two people you know and encourage them to tell two more people. The campaign starts NOW with ALL of us!

Presidential Proclamation -- National Childhood Cancer Awareness Month, 2013
http://www.whitehouse.gov/the-press-office/2013/08/30/presidential-proclamation-national-childhood-cancer-awareness-month-2013

Wednesday, September 4, 2013

Wednesday, September 4, 2013

Tonight's picture was taken in September of 2008. Mattie was home between treatments and his close buddy Campbell came over to visit him. Campbell and Mattie were inseparable during kindergarten. They gravitated to each other, understood each other, and for five year olds... they supported and stood up for one another. Mattie and Campbell did not need TV or video games to keep themselves busy. They instead used their creativity and imaginations and this could keep them occupied for hours. They built off of each other's stories and they were actually fun to watch and listen to as they brainstormed and played. As you can see in this photo, two stuffed animals were involved in their train play scheme and there was even a space shuttle standing upright ready for take off on Mattie's rug. This photo captures the beauty of two friends playing and connecting, regardless of cancer.


Quote of the day: Honesty and transparency make you vulnerable. Be honest and transparent anyway. ~ Mother Teresa


Today started out like any other day. Returning emails and doing other Foundation tasks. However, today was a bit of a revelation to me. An unexpected revelation, which I suppose is the best kind. Not one that is solicited or contrived but one which occurred by the simple sharing of minds and hearts between two friends.

I left our home today to meet up with my friend Christine. Christine's son is Campbell (who is in the photo above). Christine and I met each other when our children were in kindergarten together. After school, Mattie and Campbell would meet on the playground or had play dates with each other. These meetings gave Christine and I plenty of time to get to know each other and chat. Christine and her family supported us through Mattie's cancer and Christine has served as our Foundation Walk registration chair for four years now. Needless to say a devoted and committed friend.

However, even with our closest friends it is sometimes hard to be honest about our feelings regarding Mattie's death. I have learned over time there are safer people to share emotions with than others. Friends who do want to listen, who do want to hear about my true feelings and also will accept what I am saying without taking it the wrong way or out of context are valued and are gifts to people like myself who are grieving.

Christine and I meet periodically, and no meeting ever goes by without talking about Mattie. Over lunch today, Christine asked me what we were doing this weekend. In other words how are we planning to acknowledge Mattie's fourth anniversary of his death? Since Christine asked me and I trust Christine, I then elaborated on my feelings. I have never shared the true extent of this information with anyone other than Peter, and after sharing it with Christine today, I felt like I was totally understood and therefore it gave me the courage to write about it here.

How would we ideally want to spend the anniversaries of Mattie's death and his birthdays? The answer is Peter and I most likely would want or need different things on these dates. Which is okay, we are both okay with that, and we have learned to appreciate our different needs with grief. But if you asked me what I would want, I would most likely want to have yearly gatherings of friends. People who knew Mattie and could share memories and feelings about him with us. However, I do NOT plan such gatherings. Do you want to know why?! Well as Mother Teresa so brilliantly stated, being transparent makes you vulnerable, but as I learned today it is through being vulnerable with Christine that I learned so much more.

On September 8th of 2010, this was Mattie's first anniversary of his death. For this one year mark, Peter and I hosted a gathering at Mattie's school, by the tree his class planted in his honor. This is a beautiful red oak tree that is growing leaps and bounds. It is strong, young, and bold. Not unlike our Mattie. At the tree gathering in 2010, I baked about four dozen cupcakes and frosted them with different colors. The cupcakes had great significance since Mattie went through a cupcake phase in the hospital. I used cupcakes as incentives for Mattie to do physical therapy. At one point this was the only food Mattie was eating! At the gathering, my dear friend Junko and her mom hand crafted origami praying cranes and attached Christmas hooks to each crane. Each of the children who came to the event got to hang a crane ornament on Mattie's tree. It was a beautiful, symbolic, and touching way to celebrate Mattie's life. Naturally people chatted with each other, had cupcakes, and overall it was a very meaningful event. Yet it is how the event ended that has always stuck with me. The ending of that day hurt me for years and yet I never verbalized it really until today. When Christine heard my interpretation of what happened she felt horrible and wished she knew how I felt.

As our tree gathering event was ending in 2010, people came up to me to say good-bye and told me they had to RUN. They were running to the NEXT after school activity. Either a team sport, or whatever it may be. Seeing moms leaving with their kids in tow to the next activity of the day was devastating for me. In fact it negated anything else that happened that day, and this feeling as remained with me ever since. I can see people leaving even in my mind's eye today, just like a flashback to a scene in a movie. As people were leaving, Peter and I were left to clean up, carry things to the car, and go home. Except we weren't leaving to the NEXT activity or task of the day. We had nothing! We left to go home to an empty home, without Mattie, knowing that everyone around us had busy lives and that the tree gathering was just another task on a to do list. These are feelings I have been harboring for years.

Christine asked me today, how the event could have been different, and I told her the biggest and most stark contrast between when Mattie was alive and after he died was that when Mattie was alive, people worked with us as a team. During that first anniversary there was no team. It was a painful reality and also another loss. Now after hearing all of this Christine could have said to me, that I was wrong, that I misinterpreted things, or that from her perspective as a mom with healthy children that I don't understand the complexities of all a mom has to balance in a given day. However, Christine said NONE of these things! Instead, she took what I was saying seriously and said she wished she thought about this on the day of the event and she wished she knew how I felt sooner.

Christine was saying that some times people make assumptions of wanting to give us our space and she suggested that maybe people left that day because they thought Peter and I wanted time alone by the tree. That may have been true for a small percentage of attendees but I told Christine, when people are in doubt, they only need to ask. But I know that asking requires someone to be vulnerable. Not an easy thing to do. So the first revelation today was that I could honestly explore how I felt about Mattie's first anniversary. It was a hard anniversary of missing Mattie and then feeling an even greater loss by the reaction of those around me. There is great value and appreciation in feeling understood and to also be able to be honest about this with a friend.

However, the second revelation today was Christine's honesty about how Mattie's death has impacted her and her family. As I told her today, while crying, is that at times I assume I am the only one Mattie's death impacts and who continues to be devastated by this. As it seems from my perception like everyone around us has moved on. Christine enlightened me what it is like to watch a friend go through childhood cancer and then a child's death, and how this continues to play out in her life. As I told her, her honesty was probably the best gift she could have given me as Mattie's fourth anniversary fast approaches. Christine is the first person to really verbalize this to me, and it is through what she said today that I have a better perspective of what it is like to be a friend watching a friend go through this and the overall impact on others. I have a feeling that others do not want to tell me about their grief because they think it will compound mine. This may have been true in the beginning, but now as time passes, it helps tremendously to hear how others are dealing with the loss of Mattie. Sometimes just like people make assumptions about those who are grieving, we grievers make incorrect assumptions about those around us. How are these assumptions confronted? Only through honest and open dialogue. Or as Mother Teresa so aptly stated by being vulnerable.     

Tuesday, September 3, 2013

Tuesday, September 3, 2013 -- Mattie died 207 weeks ago today.

Tonight's picture was taken in September of 2008. Mattie was home between treatments and as you can see he was on an IV. IVs at home started early on in the process because the chemotherapy impacted Mattie's electrolytes. Usually his potassium and sodium were completely imbalanced and without these saline IVs Mattie would have gotten much sicker. Notice though who was also present in this photo..... NURSE PATCHES. For our newer readers, Nurse Patches was the nickname I gave to our calico cat, Patches. Patches earned that title, since whenever I was sick, she stayed right by my side. She was also a great companion to Mattie. We miss both Mattie and Patches and it is hard to believe they are both gone from our lives.


Quote of the day: Be who you are and say what you feel, because those who mind don't matter, and those who matter don't mind. ~ Bernard M. Baruch


I picked tonight's quote on purpose because it captures the important notion of acceptance. Particularly accepting ourselves for who we are! The reoccurring theme in my life today that I kept hearing about was "fitting in." These are words we typically associate with teenagers and even middle school aged children. Kids want to fit in and straying from society's norm can be daunting, upsetting, and in some cases isolating (though in my opinion such straying is sometimes very healthy!). Yet fitting in doesn't just apply to our friends with an immature frontal cortex (teenagers). I would say that even adults understand this feeling all too well, we just may not be as vocal and dramatic about it. Feeling that one doesn't fit in hurts at whatever age we are, and in many cases we become isolated because of preconceived notions others have about us.

Such preconceived notions can be based on what careers we have, what political party we identify with, our religion, our socioeconomic status, our ethnicity and culture, and the list goes on. However, I would also like to add that we are judged based on whether we have children or not. One woman I saw today in passing was saying that she doesn't fit in with many other women because she never had children. At one time, I may not have been able to get what she was saying, but unfortunately I get it all too well now. However, as I told her, I too do not fit in with any group. I don't exactly identify with couples who never had a child and clearly I don't fit in with couples who have children. So where does this leave me? I am not sure, but this whole "fitting in" conversation kept popping up throughout my day in MANY, MANY contexts. Some of which I can't highlight on this blog, since the stories are not mine to share.

I can only apply what I am hearing to my own life and that is primarily what I have been doing all along on this blog since Mattie has died. Once you lose a child to cancer, you truly do not fit into the world of healthy families and you do not even fit into the lives of families who continue to battle cancer or have a child who is a survivor. That leaves one in quite a quandary, a quandary where one is forced to redefine one's self. Yet here is the thing I have learned over time as I battle grief. I can't force anyone to truly understand the depths of the loss Peter and I live with unless someone wants to walk this road with me. At the end of the day, I have to be confident in my own beliefs, feelings, and thoughts. I have to stick to my guiding principles and my core foundation. All of which ground me and remain steadfast and true even after cancer. Naturally Mattie's cancer has changed me in too many ways to count, but I must keep remembering that fitting in is a concept placed on us by society. Yet despite how mature one is about this concept, and how rational one maybe about differences, not fitting in can seem like a form of grief. We as human beings are social creatures and as such we want and have the need to belong. Which may be why when someone remembers us, tries to include us, or simply shares a kind word with us, this has a miraculous impact. We can't make everyone around us feel like they fit in, but I think listening and trying to understand, goes a long way for a griever.

Monday, September 2, 2013

Monday, September 2, 2013

Tonight's picture was taken in September of 2008. Mattie was in the Hospital's clinic and with clay had designed a boat. Mattie decided to place some popsicle stick people in his boat and was in the process of giving these people faces! As you notice here, Mattie was wearing a hat. Needless to say this hat most likely did not stay on Mattie's head long. Mattie never liked hats, even as a baby! When Mattie lost his hair due to chemotherapy treatment, he did not seem phased by it at all. I think Peter and I were more traumatized by it. Mattie was quite happy walking around anywhere with his bald head and did not think twice about it. In many ways Mattie's reaction was remarkable and by watching him, he in essence gave us strength. If Mattie wasn't bothered by his hair falling out, we certainly weren't going to dwell on it, since there were so many other things to worry about during Mattie's treatment.  


Quote of the day: I am only one, but still I am one. I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do. ~ Edward Everett Hale

Tonight's quote seems perfect given the weekend we have had! Peter and I were basically quarantined at home for three days doing non-stop painting! Finally today we were able to remove drop clothes and move our furniture and things back into place. We are absolutely exhausted and throughout the weekend, I thought..... maybe this was a bad idea!!!! After all this is not a very fun way of spending three days, or a long weekend together. However, now that this is done, we truly appreciate all our efforts. Things look so much cleaner, brighter, and there is a warm glow throughout our entire first floor.

Peter and I make a very good painting team, but one thing is for certain, we were missing our littlest team member, Mattie! Mattie was a great painter and I have no doubt he would have gotten right into this project with us. Mattie was a kid, but he also understood from an early age that he was a contributing member of our family and as such, we encouraged him to participate in all activities. Including painting and other do-it-yourself projects. Peter grew up learning a great deal of carpentry skills from his maternal grandfather. I am thrilled that Peter had such a mentor, because in reality, there isn't anything Peter can't fix or do around our home. Mattie was learning these skills from Peter and Mattie really took a liking to them, just like Peter. Of course, Mattie may have also appreciated those bonding moments with Peter!!! It seems quite ironic that in during our home repairs and projects now, we THINK OF MATTIE!



Sunday, September 1, 2013

Sunday, September 1, 2013

Tonight's picture was taken
in September of 2008. Mattie was home between treatments and a friend gave him this singing and dancing yellow bird in the background. What you may not be able to tell was that as the bird was singing, and its head was bopping up and down, Peter and Mattie were dancing right along with the bird. Which was why I snapped this photo. Though there were many, many upsetting and depressing moments in Mattie's treatment, there were glimmers of fun just like this which I tried to capture. There was nothing normal about our life back then so the fact that there were times in which we smiled and laughed was a testament to Mattie's strength and his bond with us.


Quote of the day: There are two ways to spreading light: to be the candle or the mirror that reflects it. ~ Edith Wharton

Peter and I are absolutely exhausted tonight. We have been painting for two days straight. Slowly our first floor is getting transformed. Our ceilings went from a dull grey to a sparkling white! I am thrilled to see white ceilings and we selected a very Mattie Miracle color for our walls. Seven years ago we painted our walls a light peach color. Now as you maybe able to see we selected a color called luminary! It is a beautiful sunny peach! It makes our space glow, just as if a ray of sun was illuminating the room!

Here is a another photo of the chaos we are living in! Peter and I are a great painting team, because he can handle the rolling and the big jobs associated with painting, and I am great on a ladder and with details. But we are learning about muscles tonight that we never knew we had! Everything aches. We only have baseboards tomorrow, so we really put LABOR, into this labor day weekend.