Tuesday, January 20, 2015

Tuesday, January 20, 2015 -- Mattie died 280 weeks ago today. 

Tonight's picture was taken in October of 2002. Mattie was six months old. Upon first glance this photo may look darling, cute, and cozy. But if you knew Mattie well then you knew he HATED being in his crib and especially lying flat. His pediatrician encouraged me to keep introducing him to his crib and to give him time in it, but time in his crib led to two things.... non-stop crying and vomiting. It was a horrible routine and Mattie could cry for quite some time. We only broke this crying habit when I deemed he was no longer an infant and I could begin to rationalize with him, which had to be around 16 months of age. But until we got to that stage, we had some fascinating nights, or lack there of, of sleep!


Quote of the day: You must learn some of my philosophy. Think only of the past as its remembrance gives you pleasure. ~ Jane Austen


As this is Mattie's blog, I typically reflect on the loss of Mattie and the impact this tragedy has on my life. Yet today marks the 21st anniversary of my maternal grandmother's death. When I was in college my grandmother suffered a massive stroke which left her partially paralyzed on her left side. Now some people maybe saying.... well that is terrible to hear but at least that wasn't one of Vicki's parents. This is indeed true, except when someone tells you about a loved one who is ill or just died, you really need to first assess how close these individuals were to one another. In my case, I was very close to my grandmother. She lived in the same house with me and my parents and at times I viewed her as a second mom, or even as a sibling. So her illness and death are significant to me and transformed my life.

The stroke transformed my grandmother physically. She could no longer walk, feed, dress, toilet herself, or meet any of her activities of daily living. In addition, she couldn't concentrate on anything, therefore she couldn't watch TV, read, hold a conversation, and forget about swallowing anything. All of these things were impaired by her stroke. Initially after hospitalization my grandmother lived in our home for a year. Our home literally was transformed into a hospital and with that, people were too scared to visit us. My mom became my grandmother's primary caregiver but given the severity of my grandmother's health needs and the intensity of the care provided for over a year, my mom became gravely ill and landed up in the ICU for weeks. I distinctly recall the ICU nurse telling me that my mom's body was shutting down with sepsis and that she could die. It was at that point my grandmother was placed into a nursing home. Both my mom and grandmother needed care. Needless to say, from my family experience it is no wonder that when I entered graduate school, my focus became gerontological counseling and my dissertation focused on the stresses of caregiving. 

My grandmother and I were very close to one another. When she died, I was living in Boston, going to graduate school. Twenty one years ago today, on the morning that she died, I was sleeping. In my dream I can still recall be given a big bouquet of red roses. As I went to receive the roses in my arms to admire them, all the petals from the roses literally fell right off of them. I was left with only the stems and the petals were all on the ground at my feet. As I was watching this in my dream, I was forced into consciousness because my telephone was ringing. In my stupor when I answered the phone, my mom was on the other end of the line to tell me that my grandmother had just died. When she told me, I wasn't surprised because in my dream the dead roses were my sign from my grandmother that she died. 

My grandmother's personality was very needed in our household. Mainly because we are all very fiery in temperament. My grandmother in many ways was soft spoken, gentle, very kind, thoughtful, an excellent cook, very family focused (family came before her needs, which maybe part generational, but I suspect partly that was just who she was), and she loved animals and seemed to be nurturing every animal that found its way to our doorstep. My grandmother never graduated from high school, but honestly you could never tell. She was very bright, an avid reader, she loved to travel, people loved her, and I particularly found it hysterical that she could sit down in front of a piano and play despite the fact that she couldn't read music.    

Photos with my grandmother were taken before the digital age! After Mattie died, I did a lot of cleaning out of things and tonight I panicked because I couldn't find any photos with my grandmother. Peter is on a plane to New Orleans and while he was boarding I was text messaging him for help locating photos. Together we determined where I could find some! This photo was taken by Peter on New Year's Eve of 1989. He captured me with my parents and grandmother. 

I happen to love this photo. This photo was taken when I was in high school. We were living in Los Angeles at the time. But we would get home sick for New York and make periodic trips back to visit family and friends. So clearly we made a summer trip back to New York and we had lunch at Rockerfeller Center. In the summer time the ice skating rink becomes this lovely cafe. In any case I was sitting between my grandmother and my Cousin Clara (in stripes). Twenty one years may go by, but my grandmother is still remembered. If you are curious her name was Anne and by the way that is also my middle name. 

Monday, January 19, 2015

Monday, January 19, 2015

Tonight's picture was taken in January of 2005. Mattie was almost three years old by that point and he was a bundle of energy! If I was in the kitchen, he wanted to be in there too. I was working on the dishes and he was right along side me on the counter supervising the process. He was my trusty sidekick and just by his expression on his face, can't you tell he had big plans for some kind of mischief? 


Quote of the day: All sorrows can be borne if you put them in a story or tell a story about them. ~ Isak Dinesen


Last week over lunch with my friend Annie, she mentioned an article that resonated with her in the New York Times about grief. She asked me if I had seen or read it. I hadn't, which was unfortunate but wanted to track it down. As the week went on, I then received an email from Mattie's head of school, or as my faithful readers know him as...... "the Magic Man." Just so happens Bob sent me the link to the very same article that Annie was talking to me about at lunch. He was curious to know if I had seen the article, because he felt that it discussed many of the issues and feelings I had expressed about grief to him and on the blog. After hearing that, I was even more curious to read the article because with grief I sometimes feel like I STAND ALONE. Like I am the ODD WOMAN OUT. So when there is someone else that is speaking my language, I want to stop and listen.

This article in the New York Times is entitled, Getting Grief Right. What I love about it, besides the fact that it is absolutely SPOT on, is that it is written from the point of view of a parent and a psychotherapist. Dr. O'Malley, through his eloquent writing and insights, is trying to make a case that the long established model held within our society and within the practice of the mental health field needs to be redefined. That mind set believes that there is a finite time line to grief and that timeline follows a degree of intensity. All of which is not helpful in many cases and usually frustrates the griever. Personally in addition to frustrating the griever in some cases what happens is this demand to fit into society and to pretend that everything is fine, to have to put our grief aside because it isn't deemed normal to talk about and we are expected to maintain a cheery and rosy outlook about our future, only sets us up for mental health issues in the future. Particularly for parents who lost a child. They need to talk about their child, they crave to keep their child's memory alive, not to squelch these thoughts and feelings because it is easier on the world around them. Asking parents to move on, besides being disrespectful has always been extremely counter productive to me in the healing process, and thankfully after reading Dr. O'Malley's article, he confirms my feelings and apparently uses this strategy with his patients.  

Mary came to O'Malley after seeing two other therapists for grief. Those other therapists were not a good match for her. She instead came to see O'Malley because she heard that he lost a child and therefore she felt he would understand how she felt and knew he had a track record for helping others with grief. Instead of talking about her grief symptoms he did something very different. He spoke to her about her child, a very novel approach for her! 

The article discussed the frustration and feelings of being pent up with grief and trying to figure out why as grievers we aren't further along in the grieving process. In essence why aren't we over it!!! Why hasn't the sadness lifted?! Why haven't we been able to move on???!! In fact if you talk to anyone who is grieving these are the questions you hear from ALL of us!!! Guess why we are asking these questions????? Certainly we ask these questions because grief is painful and we don't like living with this pain, but the other reason why we ask these questions of ourselves is because we know we stand out in society! We know we don't fit in and people view us as different. O'Malley believes that sadness is a measure of the love and attachment lost. Certain bonds and degrees of attachment mean certain things to us and when they are lost they impact our lives significantly, they affect our identity, our meaning in life, and our emotional connections. He refers to this as the chapter 1 in the story of loss. 

The chapter 3 in his story of loss also resonated with me because this chapter has to do with the long road ahead. In many ways it is a lifetime of grief. The question is how to survive it? This is when people stop asking you how you are doing. This time period differs for everyone. For some people the support and concern ends in days, some it is weeks, and for some it is the first year. Whenever it happens it is devastating because the question becomes..... how can I manage this alone? Has everyone forgotten? Their lives have moved on, and in our case, I see that their children are still growing and developing, but for me, I still lost mine. This is a hard road paved with mixed emotions, not always pretty emotions to come to terms with. 

I am squarely in chapter 3, and like O'Malley has pointed out, I realize closure isn't possible and I have stopped looking for it, for myself and certainly from other people. I have accepted that and what I love about his article is how he ends it with the profound quote..... “All sorrows can be borne if you put them in a story or tell a story about them." I think this is maybe why I continue to write the blog (I'm telling Mattie and our story daily - I'm keeping the "sacred" bond between Mattie and I alive!) and also maybe why O'Malley recommends people seek support groups. Groups (though they don't work for everyone) enable us to continue to tell our story, to keep our loved one's memory alive, and in essence as long as we do that on some level that person never dies for us. The bond isn't broken. When articles like this are published it really does normalize grief for all of us, because so many of us struggle and hide behind a facade of trying to look normal and behave in a society which can't possibly handle the painful realities of life's circumstances.

Getting Grief Right
http://opinionator.blogs.nytimes.com/2015/01/10/getting-grief-right/?_r=0

Sunday, January 18, 2015

Sunday, January 18, 2015

Tonight's picture was taken in January of 2004. Mattie was almost two years old and as you can see..... fully on! He loved playing with boxes. He always made me laugh because he was surrounded by toys and even though he loved his Legos and trains, he somehow always found his way back to cardboard boxes. They really engaged him and kept his attention and stimulated his imagination.  He would round them up from all over our home and then he would start creating and playing with them.  

Quote of the day: Most of the successful people I've known are the ones who do more listening than talking. ~ Bernard Baruch

Today was one of those cold, grey, and raining days in Washington, DC. In essence, not my kind of day. Peter and I worked on several Foundation items. While I was sitting at my desk, staring out the window, I could see the birds buzzing about our feeders. So I grabbed my camera to snap a few photos. Fortunately my camera has a wonderful zoom lens otherwise we could never see these details. Clearly we are feeding a significant sparrow population in DC! We have been feeding this population for over a decade now! I am quite sure it is the same group of birds since sparrows can live a long time! They seem to know us and they know exactly where to come each year for food. 

For years we would feed them from the hooks on our deck. Many of these sparrows still fly into our deck area and perch on these hooks. They have gotten used to their new feeding location this year, but old habits are hard to break. 

Several of my neighbors upstairs love our garden in the summer time and look forward to seeing what we will do each year. But many of them also look forward to us feeding the birds in the wintertime. This weekend, I bumped into one of these neighbors in the elevator. Peter never met her. I only told him about her. Any case, she was all aglow about the NEW feeding location and Peter was just absorbing this transaction and conversation! I know it is hard to imagine that birds could bring such joy to a few of us. But they do! When you live in the city and it is the winter, watching the birds connects us to life and I am happy that those above me appreciate this. Feeding and caring for the birds is also an effort and labor of love. On any given week, one of both of us is lugging 80 pounds of bird seed home for these feathered friends to eat. It is hard to believe they could go through SO MUCH seed, but they do. I am sure people appreciate nature for different reasons, but I have come to see a great commonality for those of us who lost children to cancer. Many of us seek out nature, feeling connected to it, and being a part of it. For me, the birds are my winter refuge. 

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.