Tuesday, September 26, 2017

Tuesday, September 26, 2017 -- Mattie died 419 weeks ago today. 

Tonight's picture was taken in June of 2009. Mattie was home from his third massive surgery, a sternotomy. He wanted to take home his hospital bin, which actually came in handy as Mattie LOVED to play with water. Taking a bath wasn't something Mattie wanted to do anymore, once he had his broviac catheter inserted into his chest. We weren't going to argue with Mattie about bath time, since I think this made him feel very vulnerable being in water after his cancer diagnosis. Bath time was when Mattie used to have water fun. So in lieu of that, we migrated to a basin of water for him to play with. As you can see, Mattie created his own Sponge Bob Square Pants character. The main reason Mattie loved Sponge Bob was because he knew I disliked him greatly. In any case, what you can't see from this photo was that Sponge Bob took a leap into the basin and Mattie was seeing how well he could swim. 



Quote of the day: Oh, my friend, it's not what they take away from you that counts. It's what you do with what you have left. ~ Hubert Humphrey


This afternoon, I returned to Mattie's hospital to push our Mattie Miracle snack and item cart around the pediatric units. Of course no one realizes what Tuesdays mean to me, and certainly the impact of going to the Hospital on a Tuesday. The day that Mattie died, a Tuesday! I never look at Tuesdays the same way anymore. 

I go to the Hospital monthly to push the Cart. I feel it is important to do this direct service work to see the cart in operation and to personally interact with families. Typically families are too tired, overwhelmed, and focused on the care of their child to have a meaningful conversation about the cart with me. I totally understand that, and go into my visits with no expectations. The only expectation is to provide a service to others. 

Today was a very different visit. In one of the units, a couple came outside of their child's room holding their newborn who was hospitalized. I am telling you this baby was ONLY days old. The little one was in her father's arms and you could tell how proud and scared he was! In any case, the father outright asked me who provides this cart and what is the story behind the cart! NO other parent has ever asked this, as parents are typically grateful and focused on the the free items coming their way, to help them make it through the day. This dad literally started by asking me about the physical nature of the cart, why it was orange and then we moved into very meaningful questions. So I told him about Mattie, about the Foundation, and why I felt it was important to provide sweet treats to families in the hospital. 

So why? Because when Mattie was in the hospital, our care community brought me treats daily! Which is when my chocolate addiction started! In addition to treats they brought us snacks and dinners daily for over a year. Given that I found this SO helpful and SO generous, Mattie Miracle wanted to continue the tradition our care community started but on a grander scale. As I was telling this dad and mom this story today, I could see they were visibly moved, so much so, that they wanted a brochure on the Foundation and told me they would tell Mattie's story to other people. Needless to say, I think my story made them appreciate the baby in their arms even more than prior to our chance meeting. They seemed to express awe over having lost a child to cancer, and here I was in the same hospital that Mattie died in, and I am funding a snack cart and pushing it myself to help others. Rarely do I get such feedback about our work, and of course I don't do it for this feedback. But at the end of the day, Mattie Miracle wants to be supporting items and services that positively impact the lives of families caring for children who are hospitalized. 

Monday, September 25, 2017

Monday, September 25, 2017

Tonight's picture was taken in June of 2009. Mattie was in the outpatient clinic that day and behind him in a wheelchair was Jessie. Jessie was one of Mattie's outstanding art therapists. They were having a wheelchair race in the clinic, something that Mattie appreciated. Despite the tight space within the clinic, that did not stop the fun from occurring. Which to me speaks to the level of skill of Mattie's art therapists. They always thought outside the box and put the child's best interests FIRST. 


Quote of the day: I have found that when you are deeply troubled, there are things you get from the silent devoted companionship of a dog that you can get from no other source. ~ Doris Day


I have no idea what woke me up at 2am this morning, but I was wide awake and couldn't go back to sleep. I got up several times and tried walking around but then decided to turn on the TV. I have a pair of head phones by my nightstand, so I can listen to the TV without Peter hearing it. Fortunately the light of the TV flickering did not seem to bother him last night. I was up for a good two hours. Not really sure why! Around 2:30am, I was sitting in bed watching TV and trying to be quiet, and then all of a sudden I feel a great big thump on the bed. Sunny apparently heard me stirring and came upstairs to find out what my issue was, since it was out of character for me to be up at that hour. Sunny comes on our bed every morning between 4 and 5am. But 2:30am was early even for him. 

Typically when Sunny jumps on our bed, he heads to Peter's side, since Peter is the first one up in the morning. Sunny keeps a close bead on Peter. But at 2:30am today, Sunny did not head to Peter, but instead directly to me. He literally sat by my side and put his head right near my hip, and put a paw on my lap. We held hand and paw together for at least thirty minutes, as he was falling back asleep. This was a totally unusual occurrence and a part of me felt that Sunny understood something wasn't right.

I unfortunately do not know much about Sunny's background, as he was rescued from South Carolina. But I am convinced that Sunny was someone's emotional support dog. Not a therapy or service dog, which requires more training, but he shows all the classic signs of being used to providing a human comfort. Desirable characteristics in an emotional support dog are similar to those for therapy dogs, with a few exceptions. Most people seeking a dog for emotional support are looking for a loyal, highly-bonded pet. Ironically therapy dogs are more indiscriminate with their affection. Emotional support dogs are tasked with maintaining the mental well-being of their pet parents, usually through their calming presence and affection. 

Sunny has many skills but his top two...... 1) he bonds closely with one owner, and stays by that person's side. In Sunny's case, I am that person. and 2) Sunny craves affection and loves to give it. You can just see his whole demeanor change when you pet him. He absolutely loves it and if dogs could smile, that is Sunny! Mind you I did not pick Sunny because I wanted an emotional support dog, but in essence we are a good match for each other. 

I can't thank Sunny for his companionship last night, but I have a feeling he knows he is loved in many other ways. In fact, today when I came back home from being out, I bought him a home baked oatmeal dog biscuit! Needless to say, it was a hit and demolished in minutes!

Sunday, September 24, 2017

Sunday, September 24, 2017

Tonight's picture was taken on October 10, 2009. The date of Mattie's funeral and celebration of life reception. We created two programs for that day. One for the church, and the one you see here for the celebration of life program. I can't take you how long these programs took to generate. Perhaps it was the finality of the content that had to be created or worse, why the programs needed to be created in the first place. 



Quote of the day: Without reflection, we go blindly on our way, creating more unintended consequences, and failing to achieve anything useful. ~ Margaret J. Wheatley


On occasion, I go back in time and read the blog from 2008 and 2009. Not that certain aspects of Mattie's treatment and death do not remain inside my head, they do, but the blog inserts real time facts! Facts that help to give context to my memories. For nine years I have written this blog daily. It is a large commitment but I feel fortunate that I stuck with it because it captures thoughts, feelings, and their specifics that I might have forgotten. 

Mattie died on September 8, 2009. However, given the nature of Mattie's battle and death, I was in no state to plan and host a funeral immediately thereafter. Given that we cremated Mattie, this enabled us to take a month and think through how we wanted Mattie to be remembered. It literally took us all that time too, since Mattie's funeral and celebration of life service were held on October 10, 2009. 

I can recall trying to plan the funeral at the church. Believe it or not, I actually yelled at the priest. I found him to be totally insensitive and I had to help him put his demands into context with our loss. Fortunately he wasn't the priest who presided over Mattie's funeral. Jim, the priest we selected to conduct the funeral is amazing. I met Jim at the George Washington University and I always credit him for giving me my first mental health client to counsel, as she was his parishioner. Jim gave Peter and me pre-cana, so that we could get married in the Catholic church, and he even baptized Mattie. So it seemed very fitting to ask Jim to do the impossible for us. Naturally he did a beautiful job, as hundreds of people attended Mattie's funeral. 

After the funeral, we held a celebration of life service at the Visitation School, only blocks away from the church. I will highlight this event in October, because I haven't done this for years. But 8 years ago today, you will see my reflections of the day below from the blog. It is hard to imagine this but shortly after Mattie died we left our home yet again. This time it was to live with my friend Ann. Ann's dad was dying and her husband was going out of town for two weeks because of work. She was going to have a hard time balancing three young children and her dad and mom. So literally Peter and I packed up (as we were excellent at that by then, because we constantly were shuttling back and forth between a hospital or home for over a year), and two weeks after Mattie died we moved into Ann's house for probably three weeks. At the time, we did not even think twice about doing this since Ann helped us significantly when Mattie was ill. We felt that it was our turn to help her, and of course we were skilled at this point in helping someone die. 

Can you just picture this? We operated on a 24 hour a day, 7 day a week schedule for 15 months. Caring for Mattie's every need and managing health care providers around the clock under the most dire of circumstances. It was very hard to come off of this daily crisis, to not having Mattie to take care of. All I know is back then after Mattie died, I needed little to no sleep, it did not matter whether I ate or not, and regardless of these conditions, I operated on 100% capacity. The body has a way of surviving actually on very little. Some people become stupefied without sleep, and I probably did in the beginning of Mattie's battle, but over time, my body and mind adapted to crisis mode. Which is most likely why I agreed to move into Ann's house and help with her father. I had excess energy, didn't need sleep, and I needed a purpose and mission. As I was very lost after Mattie died. My energy went from caring for Mattie in the hospital to now caring for an 80+ year old in a care facility. I practically lived in the nursing home, and some nights slept in their room. Meanwhile, while I was doing this, Peter was at Ann's house helping with kid duties...... school pick ups, school activities, helping with homework, laundry, errands, you name it! It was only after the fact, when I reflect back on all of this, and I realize my decisions weren't in Peter's best interests. Because early on after Mattie's death, Peter had trouble and almost felt great discomfort being around healthy children. I eventually got there, but that did not happen for me until a year or so after Mattie's death. 

Putting this more into context, Ann's parents lost their son to cancer. So in the midst of helping her parents, I also got to hear about their son, and their reflections on loss. I am not sure given their generation, that they verbalized loss like we do today, but yet given my loss, you would be amazed at what they were able to say to me. Mainly because I think they understood that I was in it and could understand. I always reflect back on this time that I helped Ann's father die, as being unusual. Perhaps my decision to step in and help may seem odd to my readers, but to me it made sense, and upon reflection (other than the ramifications on Peter), I would still have done the same thing today. Ann's parents gave me a reason to get up each day, to interact with the world outside of a hospital, and to invest in the lives of other people around me. I am not sure what would have happened without this! I learned in the end, after our many years together, that Ann's mom considered me "her angel" until the end. 
  

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From the Blog .....September 24, 2009:


Despite being away from our home, I had trouble falling asleep last night. I went to bed at 3am, and was up by 8am. I heard Ann’s children this morning, as they were getting ready for school. The sound of excited and energetic voices, quick movements, and simply put “life” fills Ann’s house. As I sat in bed listening to all of this, a wave of sadness hit me. My home is no longer like this, and won’t be like this ever again. Children have a way of breathing life and perspective into the darkest of circumstances. If you doubt this statement, then I invite you to spend some time at the Lombardi Pediatric Cancer Clinic. There you will see children daily who are fighting cancer, are exposed to toxic chemicals, and yet despite all of this, play, and engage with each other. It is almost as if the disease can’t hold back their inner joys and happiness.

Peter and I had a chance to work on some details for Mattie’s celebration of life ceremony and reception. It is very hard for Peter and I to even think this through, and I find I am putting a great deal of pressure on myself regarding this event. I feel as if this reception and ceremony are honoring Mattie and his incredible life, and therefore, they need to be something special. Is it possible to do Mattie justice during such an event? I don’t know, but when I am in a quandary over something, I sometimes become paralyzed and unable to move forward and plan appropriately. I worry that Mattie’s memory will be forgotten in the hearts and minds of those around him, once the funeral is over. In part, this could be why I am procrastinating with these plans, I don’t want him to be forgotten, and I most certainly am not ready to come to any sort of closure or acceptance of Mattie’s death.

I had lunch with Ann today in her parent’s room, as we were awaiting the arrival of a new bed for her dad. Exchanging medical equipment is NO easy task. In fact, we are still having a hard time getting the company in question to pick up Mattie’s oxygen tank and other supplies from our home. It is ironic the skills and insights I have picked up this year by caring for Mattie. Peter and I have been forever changed, and we just know how certain things operate, things, which require an inordinate amount of patience, patience that you DON’T have when you are tired, worn out physically and emotionally from caring for a loved one. When I was caring for Mattie, I was too absorbed in the daily grind to even be aware of the insensitivities of the health care system (though I did report MANY), but as I try to help Ann, I can see just how ludicrous all of this is. 

Tanja, Ann, and myself were quite a team today as we helped to switch Sully’s beds and reorganize the room a bit to accommodate this new addition. Tanja commented to me that my PICU training has come in handy. I think she is right. I have learned to organize things in VERY small spaces, and I can do it quickly. After all, Peter and I would move in and out of PICU rooms weekly. There was NO time to dilly dally around, and yet we wanted Mattie’s room to always look fun and alive. I am sure the PICU staff got a kick out of Peter and I with our movable boxes and bins of decorations. But it was what we needed to do to survive 13 months of torture. Nonetheless, when I sit back and evaluate things, I am left with the conclusion that Mattie taught Peter and I a great deal about medicine, nursing, health care, and advocacy. These are painful gifts, but gifts that enable us to work effectively with almost any health care worker and provider.

This afternoon, Mary and I had the opportunity to sit together and look at the wonderful 40th anniversary photo album that Ann created for her parents. When you can learn about someone’s past, and someone wants to share this with you, it is a very special and almost sacred time. Mary and I looked at her wedding pictures, as well, and she relived what that day was like for her. Mary’s 40th anniversary album was truly touching, and one thing I clearly saw jumping off the page was that these two people are very loved and have spent their life caring for others rather selflessly. In the album were messages from friends and family. One of the messages happened to be from Ann’s brother, who passed away. Mary had me read this message multiple times, and was deeply moved and happy to have his words on paper. Of course, based on my circumstances, I couldn’t help but imagine how powerful hearing your deceased son’s words are, and I wish Mattie had been old enough to actually write, so I could reflect on his writings.

This evening, Margaret (my friend and Mattie’s first preschool teacher) came by to say hello, and dropped off more goodies for us. Mary was hoping to see Margaret today as well, and I am happy Margaret could visit with Mary while she was having dinner. Eating alone is never a good feeling. As I sat with Sully today, I naturally can’t help but think about Mattie. I remember someone at Georgetown telling me that death is natural, but that there is nothing natural about watching the process of death. So true, and it seems to me, as you sit and watch someone die, you can’t help but be flooded with memories of that person’s vibrant life and wonder about your own life and its meaning.

Saturday, September 23, 2017

Saturday, September 23, 2017

Tonight's picture was taken in June of 2009. I literally came across this photo on the blog as I was sifting through it the other day. This photo was no longer in my electronic files. So thank goodness for the blog, because it houses all the photos I took from July 2008 to September of 2009. It is like my Mattie archive! I am so happy I took this photo years ago, because it captured Mattie's love for locomotion. He loved building all sorts of tracks and watching his trains or cars maneuver on them. Mattie could be engaged in such an activity for hours...... well as long as he had Peter or me at his side. As Mattie was a social fellow and fed off of his interactions with others.  


Quote of the day: Nobody cares how much you know, until they know how much you care. ~ Theodore Roosevelt

Today we got together with one of Peter's childhood friends, Cassandra and her husband Charlie. Peter hasn't seen Cassandra for decades. Cassandra knows all about our situation from reading the blog and following us on Facebook. As is typical with me, I find that more people know about me, then I know about them. Cassandra wanted us to introduce her to Roosevelt Island and to also meet Sunny.

It was a delightful weather day in DC, it felt like summer. Sunny was thrilled to have a Roosevelt Island walk. While walking, we humans were busy talking and not paying attention to our surroundings. But guess who was fixated on his environment? SUNNY! Sunny literally stopped in his tracks and wanted to head right into the woods. When we looked over in the direction Sunny was pointing, we saw this female deer! 

Next to the female deer was a fawn. A tiny little thing. Sunny did not bark at all. When Peter held him back on the leash, he behaved and just watched the deer! Like the rest of us! We go to the Island often, but deer are NOT a common sighting. Especially when the Island is busy with people, like today. 

Another unlikely sighting was this beautiful turtle. He literally was walking in the vegetation by the side of the trail. An unusual place to find him. Sunny was NOT at all interested in the turtle! But today is case in point why Roosevelt Island is a little gem near the heart of the city. You can always find something in nature to spot and check out. Which maybe why it was one of our favorite weekend places to walk with Mattie. 

After our walk, we dropped Sunny back at home, and then went out for brunch. We tried a restaurant I had heard about in Arlington, VA called the Green Pig Bistro. Does the name get you, like it does me? Well they feature pork on the menu, which explains the "pig" and the "green" comes from the local produce featured on the menu. 

I have heard of fried chicken and waffles for years now. Today, I gave in and tried it. Only because I saw the table next to us was eating this dish while we were ordering and it looked intriguing. I would say it was very tasty, but that I also don't need to eat for the rest of the day! 

Friday, September 22, 2017

Friday, September 22, 2017

Tonight's picture was taken on June 15th of 2009, literally minutes before Mattie's sternotomy. In the pre-op area we were trying to make the mood lighter. After all Peter and I both understood that when osteosarcoma moves to the core area (spine, lungs, etc), it becomes an even more deadly disease to treat. In addition, Mattie's cancer had metastasized while on the most aggressive forms of chemotherapy. So you can put two and two together. 

We really loved Mattie's lung surgeon. He spent a lot of time with us prior to Mattie's surgery, answered all of our questions and after Mattie's surgery was complete, he personally visited us daily. He did not send in one of his fellows or residents! That made a huge difference to us and to Mattie's care. As you can see from this photo, we wrote a message to Dr. Chahine (prior to being wheeled into the operating room) and taped it to Mattie. It said.... Give us a Mattie Miracle. 

Quote of the day: They say a person needs just three things to be truly happy in this world: Someone to love, something to do, and something to hope for.

~ Tom Bodett

Last night a friend of ours introduced us to this unique greeting card line. I had heard about Emily McDowell's "cancer cards" through social media, but frankly until last night I never actually saw them. I believe when her card line originally was launched, there was one particular card that was an instant success as it addressed the complexities of relationships. But since then, her card line has expanded. Under the "empathy" cards, you can find cards very applicable to people diagnosed with cancer. 

https://emilymcdowell.com/collections/empathy-cards

Here are five of my favorites. The first one says, "please let me be the first to punch the next person who tells you everything happens for a reason." 

I can't tell you how often I heard this.... both after Mattie was diagnosed and when he died. At NO time did or do I find this platitude helpful. In fact it infuriates me and is such a trite statement. 

What this implies is that cancer makes our lives better. In fact recently I was on Capitol Hill and a young survivor of cancer, actually used these words...... that cancer has enriched her life. I honestly can't relate to this comment at all, and frankly question why she was selected to speak on behalf of childhood cancer survivors. Most survivors have long-term physical and psychosocial consequences to such toxic treatments, and though they maybe able to put these side effects into context, their lives are forever altered. Putting a smiley face to survivorship is not only disingenuous, it is disrespectful to children and families dealing with this aftermath. 

This is my second favorite card. It states, "I wish I could take away your pain, or at least take away the people who compare it to the time their hamster died."

You maybe asking yourself..... what???? Well this stuff actually happens. After Mattie died, a family friend literally said to me, "I know how you feel, because my horse died."

I really think that receiving such a card, not only brings about laughter, but it makes your head nod up and down.... indicating YES THIS HAS HAPPENED and I DON'T LIKE IT!

This is my third favorite. "Together we can find a cure for the phrase, what doesn't kill you makes you stronger."

Again this is another platitude which is doled out VERY often. But of course just like the one above, it serves no purpose to the recipient. More likely it benefits the deliverer.

My fourth favorite states, "I'm so sorry your sick. I want you to know that I will never try to sell you on some random treatment I read about on the Internet."

When Mattie was diagnosed with cancer, I received many email suggestions from people following our story. Everything from new treatments to consider to vitamins, and the list went on. I know this can be very overwhelming and stressful for some families. I was actually okay with this, as I took this as people trying to help us, not to judge the treatment Mattie was given. However, whatever was sent to me, I would share with Mattie's doctor. I would have to say HE WAS THE ONE WHO WAS ANNOYED! Clearly I didn't care how he felt about this!

This is the last card I am sharing. This one says, "If this is God's plan, God is a terrible planner." Guaranteed, if a loved one died you are going to hear this term or better yet.... "God's will." Either case, both are typically very poorly received. I honestly do not think God wishes any child to be diagnosed with cancer, and to suggest this, is not only misrepresenting God as a higher being, but it is also hurtful to the recipient. Because it makes it sound like you were singled out... for whatever reason! No reason WORKS! 


I would love to say that such insensitive comments ONLY come from people who have not experienced child loss. I can't tell you how many other bereaved parents have set me off over the years. It is true we all grieve differently, but parents who are grieving sometimes believe they know how to manage their thoughts and feelings and wish to instill this on you. Unfortunately grief doesn't work this way, and an insistent plan or methodology can be a total turn off. Which is why the support group model never worked for me. 

Thursday, September 21, 2017

Thursday, September 21, 2017

Tonight's picture was taken in June of 2009. Immediately after Mattie's sternotomy. Mattie's sternotomy was a surgery that entailed cutting through his chest and breast bone and going in to remove 9 lung tumors. Bone cancer that had metastasized to his lungs. Given that Mattie had two major 12-14 hours surgeries prior to this one, we weren't sure what to expect. However, in comparison to the limb salvaging surgeries, the sternotomy ran smoothly, and his recovery was actually much faster. Though when you see this photo, clearly Mattie was knocked out for the count, and had all sorts of blood pressure cuffs, catheters and drains coming out of him. It was daunting, stressful, and now in retrospect hard to believe that about two months after this surgery Mattie's cancer spread throughout his body. 


Quote of the day: There can be no deep disappointment where there is not deep love. ~ Martin Luther King Jr.



I think Martin Luther King's quote was brilliant. Because we can't really get upset over things that we aren't truly emotionally invested in. Before Mattie got cancer, I would say like any of us I had my share of disappointments. Yet with time I was able to put them into context and move on. Yet when an issue arises now and it revolves around Mattie, Mattie's memory, or the work we are doing on Mattie's behalf, disappointments constantly present themselves and unfortunately when they do they are NOT forgotten! 

The positive aspect of going to an event like Curefest last week, is that Peter and I came into contact with hundreds of bereaved parents in one consolidated time frame. It gives us incredible insights and also confirms to me that NO ONE gets over the loss of a child. We met parents who recently lost a child as well as parents like ourselves who are in this for the long haul. Ironically you would think that the ones who are newly bereaved would be the most heart breaking. But frankly they are too raw to know how they are feeling and this constant state of being in shock is actually a very beneficial defense mechanism that does enable us to block out certain things in order to be able to function and get up each morning. With time, those defenses come down and this is when all hell breaks lose. 

However, our conversations under our tent last weekend also pointed to the topic of disappointments. We can be disappointed by our friends, our family, our medical team, and society in general. There is a lot of sadness, anger and hurt to go around. But it isn't like all these emotions are going anywhere, there is no outlet for them. They remain with us always, it is just we get better at tempering and controlling them over time. I heard many parents talk about their child and how they as parents felt like they had been forgotten after the first year of bereavement. Totally can understand that and also relate to that hurt. What do we do about it? We can't change people's feelings or thoughts! So instead I see the number one way many of us deal with this is disengaging from others and the world. It is a way to temporarily regain equilibrium until we find a way to re-engage back in. I am not sure other parents would describe it this way, but in essence this is what is happening. 

I met a parent who lost an only child last weekend and she described her time on earth now as a prison sentence. Each day is the same, trapped with the same thoughts, feelings, emotions, and loss. Yet despite how horrible that may sound, when we both said good-bye to each other, we basically said.... "from one parole to another..... it was wonderful to meet you and find someone who understands." Not every bereaved parent can articulate thoughts and feelings, but when you find one who can, it can be a very positive experience because at the end of the day, it validates that we aren't going crazy, losing our minds, and are allowed to be rightfully disappointed. 

Wednesday, September 20, 2017

Wednesday, September 20, 2017

Tonight's picture was taken during Mattie's last semester in preschool, in 2007. Every Monday, his class visited the neighboring retirement community/adult care facility. I always went with Mattie's class on those days. Not because the teachers asked me, but one day while being a Monday parent helper, I saw the teachers really needed an extra pair of hands getting kids jackets on, having them line up and taking them for a walk (which involved crossing a street) to the center. Of course once inside, the kids needed help interacting with the older adults and encouragement in whatever activity they were going to perform together. On this particular visit Mattie's class enacted the Three Little Pigs to the older adults. Mattie was the kid in stripes, holding up a wolf mask. This was a very well received performance and the kids had a great time hamming it up!


Quote of the day: Be more concerned with your character than your reputation, because your character is what you really are, while your reputation is merely what others think you are. ~ John Wooden


Do you ever have a day that gets commandeered by something you didn't expect. Well on top of a head cold, which is making me very sleepy, I received a 400 page document in my e-mail inbox today. This document has to be read before my Friday licensure board meeting. Perhaps this last minute dump doesn't bother some people, but it bothers me. So I pleasantly let it be known. It is not fair to expect professionals to stop what they are doing to prepare for a meeting last minute. As the chair of the board, I really have to read all the content so I can have an opinion on each of the documents before talking to other members of the board. So if I wasn't walking Sunny today, I was reading this document. Glued to our kitchen table! May tomorrow be a better day. 

Tuesday, September 19, 2017

Tuesday, September 19, 2017 --- Mattie died 418 weeks ago today.

Tonight's picture was taken during Mattie's second birthday party. In fact, I just recently received this photo from one of Mattie's babysitters. Dana was a student of mine, and was Mattie's very first babysitter. She was excellent with Mattie. As a college educator, I had access to some wonderful young individuals who helped me once a week for a few hours with Mattie. Given then I interacted with these students for several months in classes, I could be very particular as to who I selected to work with Mattie. I only selected students to play with Mattie after my class and grading of them was over. Dana snapped this photo at Mattie's party, and recently sent it to me! I can't tell you how much it meant to receive this surprise. She is now a mom of her own, and I suspect this enables her to understand the nature of my loss much better. 


Quote of the day: Successful people are always looking for opportunities to help others. Unsuccessful people are always asking, "What's in it for me?” ~ Brian Tracy


Despite the fact that it is Tuesday, I am still reflecting on many of the interactions I had with parents at Curefest. When Peter and I work this event, we are really engaged with people who come into our tent. We typically don't have time to walk around or participate in the activities. Our sole focus is to promote Mattie Miracle, educate others about the importance of psychosocial care, and in the process listen and try to understand the thoughts and feelings of each of the visitors to our tent. 

This year more than ever, we interacted with MANY bereaved parents. Not only parents but the siblings of children who lost their battle. In fact, some of the people we were interacting with were so overwrought that I literally gave them several hugs. Words just didn't cut it! Needless to say, our mission for the inclusion of psychosocial care into the entire cancer experience (not just diagnosis and treatment, but into survivorship or end of life and bereavement) resonated with everyone on Sunday.  

But one young girl I was never forget. She had to be in her twenties. She let us know she lost her brother to cancer. In fact, she was wearing a photo button of him. She was absolutely distraught over his death, she says her parents don't talk about his death, and therefore she can't bring it up with them. When her brother was in treatment, there was NO outlet for siblings to meet, talk, or do things together in the hospital. In fact because of HIPAA, siblings weren't even introduced to each other, or invited to a planned hospital event. Which is sad, because this would have and could still be an outlet for this young woman. It was actually painful to see her leave our tent. If she was local, it would have been easier for me to stay in touch with her, but given she lives in New England, she is much further away. I nonetheless have her email and will reach out to her. Her face and psychosocial story will remain with me and when I hear these stories I realize that our experience with Mattie, has enabled us to hear other psychosocial stories, and have the insights into the issues, concerns, and problems. Thereby, concluding that the Standards are not only nice to have, but are a necessity. Upward and onward on our mission to achieve this implementation. 

Monday, September 18, 2017

Monday, September 18, 2017

Tonight's picture was taken in September of 2007. Mattie was having a playdate with his preschool friends John and Christopher. As you can see they transformed big Tupperware bins into train cars. John was the conductor and Mattie was all smiles as you can see in this photo. Despite the fact that Mattie and John were in different primary schools, I tried to keep Mattie connected to his preschool buddies. The families we met at Mattie's preschool continue to be special to us and though we can't get together and share stories about our children, we do unite over the mission of the Foundation. Which I am grateful for, and as I always say.... Mattie connected me with wonderful people. 


Quote of the day: If you think you are too small to be effective, you have never been in bed with a mosquito. ~ Betty Reese

This evening Peter and I were invited to an ice cream fundraiser held by a fellow childhood cancer organization, The Catherine Elizabeth Blair Foundation (Catherine lost her battle in 2011 to neuroblastoma). A portion of ice cream sales will go to the Foundation. I just learned about the Fundraiser yesterday. At the end of the day, I typically wane in energy and don't want to go out. But since we worked all weekend and had dinners at home, I feel tonight it is the perfect excuse to go out to dinner and have ice cream for a good cause. 

If anyone is in Clarendon, VA tonight... head to Nicecream (2831 Clarendon Blvd, Arlington, VA)! An new and innovative ice cream process. It is made right in front of you with fresh ingredients and of course nitrogen (in order to instantly freeze it). The event is from 6:30pm to 10pm. 

Sunday, September 17, 2017

Sunday, September 17, 2017

Tonight's photo was taken in September of 2006. This was classic Mattie! Mattie was four years old and the whole potty training experience was just that with Mattie.... an experience. By age 4, Mattie had mastered potty training, but I realized one thing with Mattie. He had to learn when he was ready, not on some other time line. Once he was ready, he learned quickly! But don't you love it..... sunglasses in the bathroom!?!









Quote of the day: No matter what you have done for yourself or for humanity, if you can't look back on having given love and attention to your own family, what have you really accomplished? ~ Lee Iococca

This morning Peter, myself, and Sunny walked two miles to the National Mall to participate in the annual childhood cancer awareness event. In tow was of course our shopping cart filled with 80 t-shirts, brochures, toys and gifts, our banner and collapsible slide. 

Last year we made a "selfie" cutout. I debated taking it this year, as it is one more thing to carry. But glad Peter said.... take it! It was a hit. 

Now this fellow was the highlight of our tent. He totally drew people in! People of all ages wanted to be introduced to Sunny and to pet him! He is truly the Mattie Miracle ambassador!

Our friend and board member, Ann came to help us today from 9am to 2pm. It was very important to have her presence, as it can be overwhelming at times to balance all the people who come by and visit. 

Mattie was honored on the remembrance wall at the event. I wish I could say this was a small wall, but it went on and on for many feet!

We reconnected with our fellow parent advocates at the event. Pictured with Peter is Joe McDonough. He is the founder of the B+ Foundation, in memory of his son Andrew. Andrew's blood type was B+, which is one of the reasons the Foundation got its name!

This is me with Karla Flook. Karla's daughter is a cancer survivor, and is a very active member and leader in the Coalition Against Childhood Cancer (CAC2). CAC 2 is an organization comprised of over 80 childhood cancer organizations, like Mattie Miracle, that works to coalesce around issues. 

Peter and I are pictured with Ellen Blair. Ellen lost her daughter to cancer, and is the Founder of the Catherine Elizabeth Blair Foundation. 

I am pictured with Jenny Mulks Wieneke, the Founder of Along Comes Hope. Jenny is a cancer survivor, and decided after her own experiences that she wanted to do something to help the community. Her focus is on bringing HOPE is all forms to children with cancer. 

This is the "Along Comes Hope" mascot. A cute teddy bear, who took a selfie with me.

We had many, many people who came into our tent to chat with us today. I would have to say the most memorable and poignant for me are from parents who lost a child to cancer. You can just tell that we speak the same language, as we are in a very different club from parents whose children survived. As soon as we mention to parents that it doesn't get easier after the first year of loss, you can see their eyes light up! Mainly because we are putting into words what they are already feeling and sensing. It is just that no one talks about it! I gave out many hugs today but one parent totally surprised me. Which is why I am posting a photo of this teddy bear. I am telling you this in case this happens to you!

This woman came up to me holding a teddy bear like the one in the photo. In addition to the bear, she had a bag of markers with her and a white t-shirt for the bear. She introduced the bear to me as "this is my son." I can imagine my facial expression was as perplexed as my mind was at that moment. I honestly did not get her. I asked her if the bear belonged to her son. She said NO, and repeated, "this is my son." I then asked her if she had a recording of her son's voice inside the bear (as Jenny, from the photo above, provides families with her HOPE bear which records voices). Again she said no! Finally she explained that the bear is an urn which contains her son's ashes. I honestly wish she told me this from the beginning, as I couldn't get over that she thought the bear was her son. I had to quickly assess.... was she stable and what context was she talking about. Once I got it, she asked me to sign the bear's t-shirt and then she showed me photos of her son, who's baby body was ravaged by cancer. With tumors literally protruding everywhere on his body. 

I have been thinking about this interaction for hours now. At first, I was totally taken aback that she brought her son's ashes to the Mall, then I was perplexed how she introduced the bear as her son, but now after thinking about it, I realize she is absolutely traumatized. She lost her son in April, and carrying this bear clearly helps to give her life meaning and purpose. She wants messages written on the bear's t-shirt, as I imagine these messages affirm for her that her son existed, his life mattered, and she wants others to know that this disease is very real and kills children. Needless to say, I shall never forget about the bear urn ever.