Tuesday, September 10, 2013

Tuesday, September 10, 2013 -- Mattie died 208 weeks ago today.

Tonight's picture was taken in September of 2008. Mattie was home in between treatments and that day he received in the mail a foam puzzle from Peter's parents. Mattie put the puzzle together and then decided to sit on top of it. When I saw this, I grabbed my camera, and right then and there entitled this photo.... Mattie is on top of the World! I suppose back then we were all on top of the World because we thought we were going to fight this cancer and potentially win.


Quote of the day: There is nothing more beautiful than someone who goes out of their way to make life beautiful for others. ~ Mandy Hale


I received an email today from one of the mental health professionals who is working with our Foundation to craft a psychosocial standard of care. In our email exchanges I mentioned to her that Mattie's fourth anniversary of his death was Sunday. Once she heard that, she stopped talking about work and immediately responded about Mattie and his anniversary. She is a fine example of why I feel like we put an excellent core team of psychologists together to help us with this national endeavor. They have the insight of what it is like to help a child and family from time of diagnosis and beyond and as such isn't afraid to respond to the emotional content that can come up time to time in an email. As I told her, her comments really were poignant. She wanted me to know that she feels that Peter and I have done an outstanding job at channeling our grief into helping countless people. She feels this is something to be admired and yet she also feels and understands that at the end of the day this won't be bringing Mattie back, and though we keep giving, we are never going to receive the same amount of love we give out, especially the love from our child. I never verbalized this or perhaps even thought of it in this way, but at the heart of the matter she is absolutely correct. There is an emotional inequity.

I spent a good portion of my day outside in my friend's garden. She asked me a week ago to help plant some mums for her. That in all reality probably wouldn't take long, but when I see weeds, I feel the need to attack them. Today was a glorious weather day for a person like myself (humid and in the 90s) and spending several hours outside was therapeutic. Along my weeding journey, I came across this fellow. A preying mantis! We occasionally saw a preying mantis or two in our own garden, and Mattie just loved these sightings. So when I saw today's mantis, I immediately thought of Mattie.

Later today, I went to visit my friend Mary who lives in an assisted living facility. Some of you recently asked me whether I still see Mary. I may not report about these visits all the time, but Mary is my friend and I do try to visit her regularly. Mary's decline seems even more significant to me from when I saw her last. It is very sad to see someone vibrant struck down by a neurological disease. While visiting Mary today, I had the opportunity to chat with one of her nursing aides. I try to get to know the aides on a more personal level because it gives me insights into how they feel about their job and caring for older adults. Caring for a sick older adult is not easy. Mary's roommate has significant cognitive issues and doesn't like to be touched. Which is fine, expect that she needs assistance with changing clothes and so forth. As I listened to this particular aide in question tonight deal with Mary's roommate, all I could think of is.... what incredible patience. Mary's roommate was screaming at the top of her lungs and hitting the aide. But the aide never raised her voice or got upset. She remained even keeled and kept explaining what she needed to do. Certainly not all aides are created equal.

After this episode, I told her that she does important work. I said I know we under value her work in our society and it certainly doesn't pay or compensate her well. Other than with physical injuries and aches and pains. However, I said that for many of the residents she works with, they would be lost without her. They need her kindness not only with their physical needs but with their emotional ones as well. She agreed with me and she told me she loves her job and also feels honored to be able to help her patients. As Hale's quote tonight points out, there is something special about "making life beautiful for others." I saw it operationalized tonight. May we all have someone like this in our lives to help us as we age.

DAY TWO -- Tim's orange tie campaign!
I end tonight's posting with a photo of our friend Tim's orange tie. As I mentioned in last night's blog posting, Tim has a tradition in which he wears an orange tie in Mattie's honor the entire week after Mattie's anniversary. Tim is accruing quite a collection. We know we can't get the GOLD campaign to take hold, but wouldn't it be great to start an orange tie campaign? Any case, Tim begins each of my mornings this week with a photo of his tie. It is a symbolic gesture which reminds me that Mattie is not forgotten!
 

Monday, September 9, 2013

Monday, September 9, 2013

Tonight's picture was taken in September of 2008. Mattie was sitting on the floor of his hospital room with Bob Weiman, Mattie's head of the lower school. My faithful readers may remember Bob better as the "magic man." Bob came to visit Mattie often both in the hospital and at home and taught Mattie a very unique skill, magic. Mattie gravitated to magic because it did not require gross motor movement, instead it required him to use his fine motor skills, agility, and cognitive abilities. Mattie quickly realized that not everyone can do magic and performing these tricks in the hospital made him special. Not to mention that it also caused people to take notice and interest in what he was doing. There were some days where Mattie did not want to talk to ANYONE. Yet if you pulled out his magic bag, he would consider doing a trick to two. In this photo, Bob was teaching Mattie the infamous engagement ring trick. Honestly this is a very challenging trick, but Mattie caught onto it right away! They were a good pair together and the spirit of their union lives on each year at our Foundation Walk, when Bob and several of his fifth graders perform a wonderful magic show. A show that always features a trick Bob taught Mattie, entitled, Peanut Butter Booger. In some ways the peanut butter booger trick has unofficially been named the Mattie Brown trick.


Quote of the day: In a futile attempt to erase our past, we deprive the community of our healing gift. If we conceal our wounds out of fear and shame, our inner darkness can neither be illuminated nor become a light for others. ~ Brennan Manning

When I woke up this morning the first thing I saw in my email inbox was a message from Joan Holden, Mattie's head of school, and Bob Weiman, Mattie's head of the lower school. Both emails expressed their sadness over the current state of Mattie's tree and they both felt particularly upset that we saw this yesterday on Mattie's fourth anniversary. They both clearly understand that Mattie's tree is more than just a tree to us. Seeing a dead memorial tree is like seeing a headstone at a cemetery desecrated in a way. Three tree experts examined Mattie's tree today and they all concluded that it died most likely from a fungus infection. Such an infection would explain the sudden conspicuous wilting and dying of affected leaves. As I said to Bob, I may not be a tree expert, but just like a mom and dad know when something isn't right with their child, we knew something wasn't right with our red oak.

This is a photo of Mattie's tree from September 8, 2012! This was a glorious tree and you should know it survived terrible storms, a near by electrical fire, and not once did it ever waver. But what has happened to Mattie's tree as well as his life remind me that nothing is guaranteed and a lot can transpire in ONE year's time. When I think back to 2008, we thought we were going to fight cancer and give Mattie a second chance on life. A year later, in 2009, we knew that wasn't going to be possible. Certainly a tree can be replaced unlike human life, but both Mattie and his tree tell us a very important lesson. You only get one shot at it on this earth, therefore we really should pause and evaluate how we are spending this time.



I am happy to report that Mattie's school is replacing Mattie's memorial tree for us. However, before the tree comes down Peter and I need to take all the items that have adorned the tree for the last three years off so that we can eventually re-establish their home on the next Mattie tree. I am very happy that a new tree will be planted because for us this tree is our only tangible memorial to Mattie, and it is a memorial that helps ground us on birthdays, anniversaries, and holidays. It gives us an activity to do which helps us remember and honor Mattie directly. I suppose it is like putting flowers on someone's grave. But instead of flowers we decorate Mattie's tree with items he would have loved, and items that I know capture the attention and hearts of the little ones who play near and around Mattie's tree.

I would like to end tonight's posting with the orange tie campaign. You know about the gold campaign, well our friend Tim has his own campaign in Mattie's honor. The week after September 8, Tim always wears an orange tie. This is the photo Tim sent me this morning! I assure you Tim has a great orange tie collection! Tim never got to meet Mattie, but Mattie would have gotten a BIG kick out of Tim's orange tie week in Mattie's honor!
 

Sunday, September 8, 2013

Sunday, September 8, 2013 -- THE FOURTH ANNIVERSARY OF MATTIE'S DEATH

Tonight's picture was taken in September of 2008. This has to be one of my favorite photos of Mattie while he was battling cancer. You need to understand the context behind this photo. Mattie spent several hours digging out plastic dinosaur bones from a lump of clay. He had goggles on and had all sorts of tools in his hands. Once all the bones were dug out, Mattie assembled them together, like a 3-D puzzle. Creating the dinosaur you see lying in front of Mattie. I captured that moment in time.... Mattie with the dinosaur! Mattie was tired from the dig and yet at the same time proud of his accomplishment.


Quote of the day: They say time heals all wounds, but that presumes the source of the grief is finite. ~ Cassandra Clare



Today is the fourth anniversary of Mattie's death. Before I share what this day was like for us, I want to thank so many of you who made a contribution to the Foundation on behalf of Mattie's memory, I want to thank you for the emails, and the text messages. Your kindness and thoughtfulness are NOT forgotten and are greatly appreciated.

It was a day filled with many highs and lows for us. Some lows of which I can't discuss on this blog, but I assure you there are many stories that could easily fill a book. Stories not told on this blog, and yet stories that are very much part of the grieving process. As Peter profoundly said today, part of our grief is compounded by how people react and interact with us now. I am not doing his words justice, but they caught my attention and they resonated with me.

We needed a plan today. Without a plan, we would most definitely be in trouble on anniversary dates! The plan was to visit Mattie's tree at his school and then have lunch at Mattie's favorite restaurant. Earlier in the week I bought Legos. Peter drilled holes in each Lego piece for me, and I strung a chord through each piece and created ornaments for the tree. Since Mattie was IN LOVE with Legos, I thought this would be the perfect remembrance. This photo captures the tree in CONTEXT. You can see me standing next to it. The tree is much taller than me and sits right by the field Mattie had recess at during Kindergarten. In fact, where my car is parked is where I dropped off and picked Mattie up from school each day.  

 

If today wasn't hard enough, the sight of this tree was devastating! I am quite sure Mattie's tree died! This beautiful Red Oak should not look like this so soon in the season. In fact, I went back in my files to look at photos I took of the tree on September 8, 2012. Last year at this time the tree was ALL green. Now its leaves are brown, shriveled, and the tree looks bone dry. The tree is also missing its water gator bag, which it had around its base for years. I honestly can't tell you how heartbreaking it was to see this dead tree today. This is our only memorial to Mattie and to see it looking this way brought us great sadness. In fact, it practically sent Peter right over the edge. For quite some time, we couldn't even talk to each other today. It was that upsetting.   

Here is a close up of Mattie's tree filled with Lego pieces, butterflies, planes, hot wheel cars, and the list goes on!                  

My nickname for Mattie's tree has always been the "glimmering tree!" When the sun shines on it, it twinkles, and when the wind blows, the chimes that hang on it musically catch your attention!      

For Christmas of 2012, I hung a Mater ornament on Mattie's tree. Mattie loved the movie, Cars, and I was happy to see all the ornaments we placed on the tree are holding their own and keeping the tree company. If they could only breathe life into the tree!               

When we arrived home today, there was a note on my door that flowers were delivered for us. So I went downstairs and found this wonderful Mattie Miracle color themed arrangement and beautiful hand crafted poem waiting for me. My friend Carolyn and her children created this for us and after seeing the death of Mattie's tree, these flowers and sentiments were really cherished.  I would like to end tonight's posting with a message from my mom and then the posting I wrote from Mattie's last day on this earth (it gives you a feeling for Mattie's traumatic death and the agony of the decision to basically put him in a coma to allow him to die). My mom wrote, "We know how difficult it is to reflect on what happened on this day 4 years ago.  It is an unspeakable tragedy and the consequences of that fatal day will last a lifetime never giving you peace until your last dying breathe.  We too can never be the same and understand that this is a grief that goes on and on. We share your mourning for our beloved Mattie and our only hope is that he is free of the human bondage that took his life and that his spirit has been released, like the balloons at his memorial,  to float high above us with the sun, stars and  the moon, his symbol in life, so that they may shed their brilliant light upon him forevermore and be his companion through eternity!"



MATTIE'S BLOG -- SEPTEMBER 8, 2009

I am mentally wiped out from today. I received over 150 e-mails, but I am unable to stay awake long enough to actually read them! So I look forward to reading them tomorrow. Mattie's blog was hit over 5000 times today, so I appreciate you visiting electronically Thanks Norma (one of our great sedation nurses) for the chocolate cake today. It is inspiring me to write the blog.

Mattie had a VERY harrowing night. From 2am on, Mattie was having trouble breathing, and appeared to be in intense pain. It was the most intense five hours of our lives, and the sights and sounds we observed during this time were horrific, ones I don't wish on anyone else. I can still see Mattie's sweet face writhing in pain, gasping for breath, and making a horrible congested sound, which if I don't ever hear this again in my lifetime, that would be too soon! Dr. Shad called this chest congestion, the "Death Rattle." That is an accurate description because when you hear it, you know death is pending. In all reality I found these five hours frightening, because we just did not know how the death process would unfold.

We were blessed to have Sarah Marshall, one of Mattie's outstanding HEM/ONC nurses, working with us last night. I now have four angels in my life: Ann (my angel of Hope), Linda, (my angel of caring), Debbi (my sedation nurse angel), and Sarah Marshall (my angel of mercy). Sarah Marshall was assigned to work with Mattie only last night. Typically a HEM/ONC nurse is assigned three patients during a given shift. Sarah Marshall was proactive and did everything that was humanly possible to make sure that Mattie was relatively pain free, which WASN'T easy. Mattie was on IV dilaudid, dilaudid boluses by hand, a Versed continuous drip, as well as boluses of Versed. In addition, Mattie was receiving albuterol through an inhaler, which helped to keep his airways open.

Peter and I spoke to Mattie throughout the night. We weren't sure exactly what to say, but we told him we loved him, were proud of him, and in essence he could die and we would be fine. We wanted him to know we understood he was in control over how the night played out.

By 6:15am, Mattie was receiving very high dosages of pain medicine, however his pain wasn't subsiding, and frankly we were getting concerned with how we could manage his very over taxed heart and body. Dr. Shad prescribed propofol at that point to put Mattie in a twilight sleep. But propofol is known to slow down the heart rate, and this assisted in giving Mattie relief and helped to stop prolong the agony! Mattie died within one hour of the propofol infusion. While Mattie was in pain, I could see he would try to sit up and talk with Peter and I. At one point, he mentioned to us that "he was going to die." So we concurred with him and this provided some leeway to talk about our fears and hopes for him. We told him we loved him and that it was okay to let go. Periodically Mattie would sit up and try to open his eyes, and one time he looked at me and said someone else was in the room with us, by the door. Well no one earthly was in the room with us, but we knew Mattie's death was near. Here is the thing though, seeing him suffer in pain, and listening to this "death rattle" for hours on end, made the option of death much more peaceful and appealing. My heart was aching over the pain Mattie was in. Dr. Shad assures me that Mattie was always comfortable, and the "death rattle" is much harder for the caregiver to listen to for hours.

As Dr. Shad said to me today, "Mattie fought death." Mattie just did not want to die. Dr. Shad feels that this was because he did not want to leave Peter and I behind. After all the three of us thought we would be together for always. Careful when you assume things!!! Dr. Shad told me that she has been an oncologist for 25 years and in all her career she has only had to use propofol on one other child patient! She said Mattie was her second, and Mattie needed it because he was resisting death. I actually found her statement very empowering, because if Mattie was willing to be that congested for such a significant period of time then he really must love us dearly.

Once on propofol, Mattie's body started to relax, and I decided to lie down next to him on his bed, as we were awaiting death. I wasn't sure what death was going to look like, but slowly one by one his respiratory rate went to zero, his pulse oximeter went to zero, and his heart rate also went to zero. Hearing all these values flat line was another sound I won't forget any time soon. But by that point Mattie was in my arms. The nurses and doctors gave us about an hour alone with Mattie after he died, to say good-bye. This was a very touching and tearful hour. How do you say good-bye to your child? Both Peter and I know on some level that Mattie has died today, but on the other hand, we are having intense trouble believing this. As Debbi said today, Mattie's face looked like he was smiling and in peace. Thank God because the five hour ordeal was something I am trying to forget.

Sharon, the Lombardi Clinic chaplain, was with us starting at 4am. She helped say a prayer before and after Mattie's death. Sharon did a wonderful job, and though I have my own issues I am working out with God, I saw the need for prayer and to ask God to spare Mattie more pain and suffering.

After we had some private time with Mattie, he was visited by over 20 Georgetown Hospital employees. Jenny, Jessie, and Linda bought four stepping stone kits and we all worked around Mattie and did a stone for each foot and each hand. This is something I always wanted to do, and I am happy to have these cherished gifts that will always remind me of Mattie. I appreciate Tricia, Debbi, and Katie's help, because as Peter and I were pushing Mattie's hands and feet into the cement like substance, they were cleaning the substance off of Mattie. It was an amazing experience that occurred today, because in Mattie's postage stamp sized room, many employees came by to share their fond stories of Mattie with us. It was touching to see and hear how much Mattie has touched people's lives. My parents were so happy to be able to meet in person many of the people I have been writing about on the blog. In addition, Brandon, Mattie's big buddy, also visited. I could tell that Brandon was very upset to lose Mattie, and I told Brandon that Mattie loved him and considered him a good friend.

Once all the visits were over, Peter and I had the last chance to say good-bye to Mattie before preparing him to go to the hospital morgue. Lovely, no?! Saying good-bye to that beautiful face, those cute cheeks and hands was down right impossible. There are times the true reality hits me and I don't know how we will go on. Literally!

Tricia, Debbi, and Katie then gave Mattie a bath, and as unpleasant as this sounds, they had to place Mattie's body in a body bag and transport it to another floor in the hospital. I removed myself from the room, because I did not want to see the body bag. My precious son landing up in a body bag was a little hard to take. I sat outside with Dr. Shad and Linda, and Peter remained to help with the process. Mattie's "big brother" Jey came up to see us and also stayed to help transport Mattie to the morgue. He said no one else could do it, it was his responsibility today, because he loves Mattie and wants to give him a safe drive on is final destination within the hospital.

Saying good-bye to Georgetown today made me sad. I know we are always invited to C52, but it isn't the same. The nurses were clearly affected by Mattie's death and in many ways I was surrounded by this amazing community that we have gotten to know over 13 months of hospitalization. Jey also told us a funny story. Jey could picture Mattie up in heaven and arguing with God about his wings. Jey said Mattie would WIN about how large they would be!

We arrived at the hospital last Thursday with three of us, but today we only came home with two. How I miss the noise, sights, and directions given by Mattie, instead what I have floating around in my head are the sounds of hospital monitors. When we arrived home, I saw Speedy Red and almost lost it. In all reality being around Mattie's things bring about great sadness.

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.