Saturday, January 17, 2015

Saturday, January 17, 2015

Tonight's picture was taken in January of 2004. Mattie was a year and a half old. In typical Mattie fashion he was a busy bee. He pulled out his books, video tapes, and other objects and began to stack and build with them. Mattie was all about creating and designing, and not necessarily using objects for their intended purpose. 


Quote of the day: I have never met a person whose greatest need was anything other than real, unconditional love. You can find it in a simple act of kindness toward someone who needs help. There is no mistaking love…it is the common fiber of life, the flame that heats our soul, energizes our spirit and supplies passion to our lives. ~ Elisabeth Kübler-Ross

Peter and I spent the morning working on Foundation things. But this afternoon we decided to pay a visit to Mattie's tree. We wanted to take down the Christmas ribbon that was tied around the tree and replace it with a winter themed ribbon. This is the first year we are tying a seasonal ribbon around the tree, and it is a traditional that we want to keep up. It enables us to visit the tree on a regular basis. 

Here is a close up of this cute snow man ribbon! I have a feeling Mattie would have appreciated the whimsy in this ribbon. I certainly know Mattie loved the snow, playing in it, and despite the fact that I hate the cold, Mattie had a way of convincing me to stay outside with him and play in it! I remember some of the days which seemed absolutely frigid, and yet we were both outside, building in the snow and creating elaborate things like snow tunnels for toy cars. The white color within this bow reminds me of those snowy days together and the snowmen smiling, somehow reminds me of Mattie!

Friday, January 16, 2015

Friday, January 16, 2015

Tonight's picture was taken in December of 2006. Mattie and Peter were at Deerfield Beach in Florida building, not a sand castle, but one of their amazing structures. They could be at it for hours, designing moats, tunnels... you name it. Once the structure was actually built, then Mattie and I would comb the beach looking for debris to decorate it with. On some occasions, what they were designing was so intriguing that others kids would approach us and ask if they could join in! 

Quote of the day: I believe that no characteristic is so distinctively human as the sense of indebtedness we feel, not necessarily for a favor received, but even for the slightest evidence of kindness; and there is nothing so boorish, savage, inhuman as to appear to be overwhelmed by a favor, let alone unworthy of it. ~ Marcus Tullius Cicero

This morning Peter and I had the opportunity to meet with the Director of Quality of Life and Survivorship at the American Cancer Society. We met over tea and pastries. Which to me is the best way to meet. As of December, Mattie Miracle has been participating in a National lobbying agenda with over 100 childhood cancer organizations. Yesterday's conference call I as involved with tied into that work as did today's meeting. I always find a meeting that gets me to think slightly differently about things rather stimulating. It is hard as a parent who lost a child to cancer to think objectively all the time, but when I hear the guidance and advice from others who are invested in the process but who are not as emotionally attached to the subject matter, it helps.

Later in the day, I held a small birthday luncheon for my friend Ann. This is the seventh birthday I have celebrated with her. Though I have known Ann since 2005, we only began spending time together when Mattie developed cancer in 2008. All of the women, except for one at the table, had children who attended Mattie's preschool. It is one of the things that unites us all. In honor of the day, I made the flower arrangement for the table and to me there is something special about fresh flowers especially in January. 
pictured in the front row from left to right are Dawnee, Ann, and Ann Thomas
pictured in the back row from left to right are Mary, Catherine, and Vicki

Thursday, January 15, 2015

Thursday, January 15, 2015

Tonight's picture was taken in December of 2006. We took Mattie on the Jungle Queen, a riverboat that sailed around Fort Lauderdale into one of the inlets where we got to see all sorts of animals and even met this man that claimed to "tame" alligators! Mattie loved boats back then and his goal was always to save money to buy a boat. NOT a toy boat, but a real one. He wanted to be a captain of a boat some day! 

Quote of the day: A tree is known by its fruit; a man by his deeds. A good deed is never lost; he who sows courtesy reaps friendship, and he who plants kindness gathers love. ~ Saint Basil

Despite being stressed out over a conference call today, I got out of my home at lunch time and met my friend Annie for lunch. I met Annie in 2010, after both of our children died from cancer. We attended a lobbying day on Capitol Hill together. We have been friends EVER since! Annie lives in Charlottesville, VA but whenever she comes into town, we always meet up. I am so happy to have Annie in my life because we see eye to eye on many things. When the world can't possible get what is going on in our minds and hearts, we get each other! Because I did not want to stray far from home, I asked Annie to meet me in DC. I haven't been to the Hotel Lombardy in years!!! I used to host events at this hotel when I worked at the University. It is a boutique hotel and absolutely darling. Old world in which there are still bellman and people who greet you at the door and are courteous. I assure you it makes a HUGE difference!

I have gotten to know one of the bellman at the hotel over the past two weeks. Mainly because I wanted to find the right location for Annie and I to have lunch at which it wouldn't be too hectic and congested. Everything around me in the city is chaotic! But when you visit the Hotel Lombardy it is simply peaceful! In any case, the bellman this week recognized me from last week and we chatted again. He greeted me by kissing my hand! Honestly where do you get this anymore???? Well the tone he sets as soon as you walk in the door makes a big difference with all the guests because what I found was that the guests landed up talking to one another in the lobby. I link that directly to the warm and inviting atmosphere and tone set by the bellmen. In any case, I am ready to move in!

Annie and I ate in the Venetian Room today and the windows are huge. The sun was shining and despite it being cold out, it changed the tone of how I was feeling. As Peter says often, I am directly affected by people and the atmosphere around me. He is absolutely right!!! People and my atmosphere can truly energize me or suck the energy right out of me. Thankfully Annie gave me the energy and courage I needed to move on with my day. 

Before I headed home and onto my call, I stopped off at our local market and bought flowers for my friend's birthday tomorrow. I created this arrangement. As I was walking home, I passed our local homeless shelter. The men sitting outside looked up at me and said.... now there is a lady who is prettier than the flowers she is carrying! I thanked them for that lovely compliment. Again, something else that made me feel good before having to muster up energy for a 90 minute phone call. 

I made it through my call. But it wasn't easy. The call centered a great deal on lobbying issues and I am not a lobbyist. Yet I was determined to get one of the issues I am passionate about across. I wasn't sure how to do this since I am unfamiliar with this group and the people on the call. I did not want to be disrespectful. Nonetheless, I am passionate about the cause of psychosocial care and what it means for children and families. Needless to say, I got my point across.  

Wednesday, January 14, 2015

Wednesday, January 14, 2015

Tonight's picture was taken in December of 2006. Mattie was sitting on top of the packing boxes my parents shipped to us with their items in it. Mattie thought these boxes were absolutely fantastic! Mainly because they were HUGE! Like big climbing blocks. Both Mattie and Patches (our cat) got a lot of joy from these temporary additions to our home. Mattie always made me laugh because to some extent he found more versatility and fun out of a cardboard box than from a toy!


Quote of the day: What comes from the heart, goes to the heart. ~ Samuel Taylor Coleridge


This has been the week of conference calls for me. To the average person this is probably NO BIG DEAL! It is the main form of communication these days in the work place. Peter spends perhaps 80% of his day on the phone with people all over the world sometimes. Managing people, talking to them and directing these calls. Honestly if I had to do this all day long, someone would have to medicate me! Prior to Mattie developing cancer I had no problem talking on the phone, but now I hate it! Literally!!!There is something about sitting still and having to listen and concentrate to someone without seeing their face which is problematic to me. Now add to this problem a group of people on the phone and you can rest assure that this is a recipe for disaster for me. I truly don't like it. It is beyond a feeling of discomfort. It takes me a great deal of focus and concentration to get my thoughts together, to be able to listen, process, and with regard to tomorrow's call to also take notes. Ironically you see tomorrow, I am supposed to run the call and also take minutes! It should be entertaining on many levels. 

The anxieties and issues that are the direct consequence of surviving Mattie's cancer are hard to describe to most people. Mainly because they sound absurd, especially if you haven't lived through the trauma of childhood cancer or if you have never experienced a trauma in general. But unfortunately there are consequences and though it would be much easier if I avoided some things altogether, I know that isn't practical, mature, or part of life. Yet I am aware of this change within myself. I guess the equivalent would be like someone who may have broken a bone noticing a decreased range of motion, things just don't function the same way anymore. Yet we learn and find ways to compensate. I am still learning and trying to find ways through the discomfort and yet while anxious I have to be cognizant that if I get distracted I will be unable to process the content of what I am hearing on the phone. 

Tuesday, January 13, 2015

Tuesday, January 13, 2015 -- Mattie died 279 weeks ago today.

Tonight's picture was taken in December of 2007. Mattie was visiting Florida. Right before this photo was taken there was a storm. After the storm had stopped we decided to go outside for a walk. Mattie needed fresh air and to move around. On our walk, Mattie found this wonderful palm frond. In typical Mattie fashion he wanted to take this leaf back HOME with us. This leaf made it to our hotel room and stayed there for a week. Fortunately I was able to convince Mattie that we weren't going to pack the leaf and take it to DC. Nonetheless, I did break off a piece of the leaf and packed it. This portion remained in Mattie's bedroom for years. 


Quote of the day: In the confrontation between the stream and the rock, the stream always wins--not through strength but by perseverance. ~ H. Jackson Brown, Jr.

Good evening all, it is Peter writing tonight (just a one night guest appearance).  I wanted to share my own perspective on daily living since Vicki writes every day (which is an unimaginably challenging task) about a myriad of topics, and I like so many, just get to enjoy the fruits of her daily blogging. Tonight's perspective is on interacting and connecting with your child.

As our faithful readers probably know, Vicki counts the weeks since Mattie passed away on each Tuesday (since he died on a Tuesday).  I count the days, each and every.  I have several things that have become part of my daily routine that involves reminding myself of the day's count.  I take a few moments several times across the course of a typical day to remember the number, reflect and recall my son.  I have been doing this each day now for 1,953 days. 

I am sure upon initially reading this you are thinking "how morbid" or "how strange, but you see, unlike the dads of healthy, living children, who have so many, many milestones, events, interactions across the course of any given day (for example, like saying good morning, or dropping them at school, or texting or even having lunch with them), I do not have those opportunities.  

So, I decided on the second day after Mattie's death that I would continue to create those opportunities as best I could, so that for just a few fleeting moments each day, I could feel like I had some sort of connection, a reminder of my son.

So to those with healthy, happy, vivacious children, please make sure to treasure and cherish the special gift you have, each and every day, of being able to interact and to engage with your child or children, as there are some of us in this world who have only counting days as a means of connecting with ours.

Monday, January 12, 2015

Monday, January 12, 2015

Tonight's picture was taken in January of 2005. Mattie was at a birthday party with his cousins. The funny part about Mattie was the "cake time" was not his favorite part like most children! Mattie would pick at the frosting (maybe) but for the most part Mattie was NOT in love with desserts or sweet things. Instead, he saved those treats for me. I always did very well in the deal. I got most of Mattie's treats! However, as you can see right in front of Mattie was a sippy cup! That thing never was far from reach. We always had a cup filled with milk in tow with us where ever we went. Which wasn't easy because milk spoils easily especially in our hot summers! With the amount of milk Mattie drank, we always thought Mattie would have had the strongest bones around.  


Quote of the day: The purpose of human life is to serve and to show compassion and the will to help others. ~ Albert Schweitzer


Over the weekend my long time friend Mary Ann, sent me the article below entitled, "When a Nurse Says Goodbye." As soon as Mary Ann sent me the article, the title intrigued me, so I immediately read it. Mary Ann knew that Mattie's nurses served a crucial role in our lives and I suspect when she sent this to me, she had a feeling the article was going to resonate with me emotionally. She was absolutely correct. Mary Ann and I went to graduate school together and we met in our ethics class and became instant buddies. You can learn a lot about a person in an ethics class and of course the test of time places a great deal of challenges before us. Yet our friendship has remained consistent. To me that is something to be celebrated. 

I am deeply grateful that Mary Ann and several of my other faithful readers understand the meaning and connections that I feel for Mattie's nurses. To me these are extraordinary women who went above and beyond the call of duty to care for Mattie, Peter, and I. Naturally, there are a few that I am particularly indebted to and remain in contact with even today. These nurses remain a continual part of my support system. Tricia was one of Mattie's HEM/ONC nurses who we met the first week of Mattie's treatment and Debbi was Mattie's sedation nurse. These nurses may have been part of the hospital team who cared for Mattie, but in essence became a part of our family then and remain a part of it today.

When I read Mary Ann's article below, I actually forwarded it to Tricia. There were so many times within the hospital that she helped Peter and I. In countless ways. Here are the top three listed below that should never be forgotten and the beautiful part about all of this is the feelings we have for Tricia are mutual (as the article so eloquently illustrates about nurses)!!!

1. The first week that Mattie under went chemotherapy, he was very upset, emotional, and aggressive. While in his hospital room, he became inconsolable and hostile. He started yelling at me, he told me he hated me, and then threw me against the door and started to kick me. Tricia was in the room with us and observed it all. Mind you neither one of us had much sleep because we were adjusting to living in the pediatric intensive care unit and we were stressed out and frazzled with this new diagnosis of cancer. Tricia could have easily walked out of the room to let me deal with this tirade. However, she didn't! She instead got a hold of Mattie and told him that he did not mean what he said or what he was doing. She told him that we were both tired and moved us both to his bed and tucked us in together for a nap. She understood my feelings were hurt and I was crying, and she got all these feelings because she is a mom herself. Her kind, compassionate, and sensitive gestures, showed me that day that I was not only dealing with a competent health care professional, but I was dealing with a human being who cared for my son and my emotional health. She wasn't going to walk away when times got tough and with cancer times are always tough!

2. One of the pediatric intensive care unit (PICU) nurses mentioned to Mattie's physician that the reasons Mattie complained of pain was because of me. That he was seeking pain medication to get my attention. She felt that Mattie spent TOO MUCH time with me and that particular afternoon this nurse barred me from Mattie's room. Meanwhile Mattie was in his room SCREAMING for me to come back!!! In the hallway, I was sitting with this PICU nurse, Mattie's physician (who believed the PICU nurse over me!), and Tricia. Thankfully Tricia was working that day and not only put this PICU nurse in her place but also gave it to the physician. Tricia fortunately had been working with our family for a much longer period of time than this other nurse and knew our family dynamics. It was an absolutely horrific moment and without Tricia's advocacy Mattie would have been beside himself and I honestly felt like I could have throttled a nurse and a physician that day. Clearly in retrospect, we now know that Mattie had dealt with extraordinary pain throughout his entire battle and I sometimes wonder how some of these physicians who wanted to withhold meds from him feel about this NOW?! If they even think about it at all!

3. The final example (though there are MANY! with Tricia) relates to the article. In August of 2009, Mattie was complaining of not feeling well. He hadn't been eating. He couldn't drink ANYTHING either. The doctors kept telling me this was a side effect of the chemo. Some even told me that Mattie was manipulating me and that was why he wasn't eating (as if a seven year old post chemo was going to be developing an eating disorder??????). Finally I couldn't take it any more and we demanded that Mattie get rescanned. It was on scanning that we learned that Mattie's cancer spread everywhere just 6 weeks off of chemotherapy. The doctors SEEMED stunned. Despite being stunned, we treated Mattie with cyberknife radiation to reduce the pain. In all reality the team was so focused on his treatment for so long, the transition to end of life care was impossible to accept. I couldn't accept it either. However, about a week or so before Mattie was going to die, Debbi and Tricia finally confronted me. Debbi actually started the process with me outside in the hospital garden and then Tricia addressed it with me inside the hospital. At the time I did not understand why none of Mattie's doctors could tell me. But I have come to understand that discussing death with patients and their families is just not something doctors are comfortable with, it seems to me their training is lacking, and their goal is to fix and heal. Yet unfortunately with cancer this isn't always possible. I am so grateful for the truth and I am grateful that Tricia cared about our emotional health then and today. 

For every family member who had a special connection with a nurse...... this article is for you!!!! 

http://kitchentabledevotions.com/when-a-nurse-says-goodbye/

Sunday, January 11, 2015

Sunday, January 11, 2015

Tonight's picture was taken in December of 2007. We took Mattie on a fan boat ride that day through the Everglades in Florida. Mattie got to see alligators up close and personal. I will never forget that experience, how loud the boat was, and what it was like to glide on top of the water. This photo was NOT what the fan boat actually looked like. After our tour, we got to see what some of the retired fan boats looked like and Mattie climbed up on top of one and we snapped a photo of him. As you can see Mattie enjoyed this experience! Mattie loved gadgets, anything that moved, and understanding the mechanics behind these things!


Quote of the day: A flock of wild geese had settled to rest on a pond. One of the flock had been captured by a gardener, who had clipped its feathers before releasing it. When the geese started to resume their flight, this one tried frantically, but vainly, to lift itself into the air. The others, observing his struggles, flew about in obvious efforts to encourage him; but it was no use.

Thereupon, the entire flock settled back on the pond and waited, even though the urge to go on was strong within them. For several days they waited until the damaged feathers had grown sufficiently to permit the goose to fly.

Meanwhile, the unethical gardener, having been converted by the ethical geese, gladly watched them as they finally rose together and all resumed their long flight. ~ Albert Schweitzer

Along our journey today, I saw my friends, the Canadian Geese! I know there are many people who are not Geese fans! I happen to LOVE them. They are the only things about the winter time that I like. I love following and tracking them. They seem like the only sign of nature that is alive. I also love how these birds stick together. They are a team, they move in packs, and to me they look so gracious on a barren lawn. As Peter was driving by, I grabbed my camera and tried snapping photos. This was the best one I captured! 

I did not feel up to writing much tonight as Peter and I are both feeling under the weather. So I am signing off, but I definitely wanted to share my geese photo with you.