Saturday, February 8, 2014

Saturday, February 8, 2014

Tonight's picture was taken in February of 2009. You maybe confused as to what you are actually seeing in this photo. I am on the floor in grey and Mattie's physical therapist, Anna, was right next to me. Except our roles were reversed. Mattie was the therapist barking out exercises and we were his patients trying to comply. Anna was a great sport with Mattie. As I always said, Anna started out a great therapist, but after 14 months with Mattie, she became what I would call an outstanding therapist. Mattie pushed every button of hers possible, but she never gave up. She always pursued ways to inspire Mattie to move and use his body again. Even if that meant participating in her own movements and therapy routines. 


Quote of the day: I will not hide my grief as I did not hide my love. ~ Angela Miller

I woke up this morning feeling just awful. I did not communicate that to Peter at first and we went about doing last minute work for the Foundation think tank next week. However as the morning continued on, I snapped. I couldn't move another inch or do another thing. Every part of me hurt, ached, and I felt congested. It finally dawned on me, I am not tired, I am sick. So I spent the entire day in bed running a fever and just got off the phone with my doctor's office. Since I have to travel next week to Florida, I know it wouldn't be wise for me to wait to get antibiotics. All I can say is thank goodness for phones, electronic prescriptions, and drug stores open 24 hours a day. 

I would say I also learned in Mattie's cancer battle and death, to advocate for myself and others within the medical community. If you don't do it, you won't get adequate care. This is not a slight on the medical profession, it is just the reality of the system. The more you advocate and be direct about what you want, the more likely you will get it. I no longer talk with a doctor simply about my symptoms. Instead I lay out a succinct history and then I make a direct ask for the medication I need. We are forced to do this as patients because doctors don't have the time to dig deeper into our stories and to hear our issues and problems. In other words we have to connect the dots for them regarding our own medical history and needs.

Friday, February 7, 2014

Friday, February 7, 2014

Tonight's picture was taken in December of 2008. Mattie did a lot of playing on the floor in his hospital room. Given that Mattie was battling cancer and therefore he had all sorts of issues with immunity, this wasn't my favorite place for him to be. But he was a child and the room was confining, so we learned to make it work by putting sheets down on the floor. Next to Mattie is Tricia. Tricia was one of Mattie's HEM/ONC nurses. We met Tricia early on in Mattie's treatment and to this day Tricia is an important part of our family. We stay connected and she and her family attend each and every one of our Foundation walks. Though Tricia was Mattie's nurse, she took care of all three of us on a regular basis. She understood Mattie and knew he needed to be a child, that he was very bright, creative, and was presented with many highs and lows. She had no problem getting down on the floor with him and engaging him, as the photo shows. My very first encounter with Tricia was when Mattie was screaming at me in his room during the first weeks of treatment. Mattie was basically hitting me and telling me he hated me. This wasn't a pretty scene to observe or be a part of. Tricia could have easily left the room and had me manage this on my own, but she did not. Instead, she literally supported both of us. She understood Mattie's anger, and most definitely understood the pain I was experiencing since she is a mom herself. She got Mattie to calm down, to stop hitting me, and told him that he really did not mean what he was saying. She then walked both of us to bed, tucked us in, and dried all our tears. A day I won't ever forget. She proved herself to me early on, but her advocacy and compassion did not stop there. It continued throughout Mattie's 14 month battle and exists even today for Peter and me. It is no wonder that Mattie told Tricia one day in the middle of the PICU hallway that he "loved" her!


Quote of the day: No matter what people tell you, words and ideas can change the world. ~ Robin Williams


Today out of the blue I received an email from someone I don't know. A friend of mine referred her friend to Mattie's blog. We are suffering different types of losses, yet a loss nonetheless. This new reader wanted to reach out to me to let me know how much my words meant to her. That my writing resonated with her, she could apply it to her own life, and of course in the process learned about Mattie's battle. All music to my ears. Actually receiving an email like this is why I continue to write each day. 

There are times when I would like to say forget it. No more blog writing! It takes time, energy, and emotional resources. Yet I continue to write for personal reasons and of course when I hear that perhaps what I am sharing is helping someone else, this further inspires me. Tonight's blog is rather short because I am not feeling well and can only hope that tomorrow is a better day. 

Thursday, February 6, 2014

Thursday, February 6, 2014

Tonight's picture was taken in October of 2008. Right before Mattie's first limb salvaging surgery. Mattie was standing in the middle of his school's football team. Mattie's school is divided into three different campuses, Mattie having completed kindergarten on the lower school campus. However, these football players were in high school, so that day we visited the upper school campus to get to know them. Notice that Mattie was standing on the School's track, this is the same track that we walk around each May during our Foundation's annual awareness Walk. The track is very symbolic for me, and when I am on it, I think of Mattie and this moment in time with him. It was in 2008, that I also met Dave Holm. Dave was the head coach of the football team at the time. Dave fell in love with Mattie and became an integral part of Team Mattie. He visited Mattie often at home and in the hospital, and also made sure his team stood behind Mattie. They showed their support by giving Mattie signed footballs and even enlarged this blog photo and personally signed their names to it. 


Quote of the day: When your past shows up to haunt you, make sure it comes after supper so it doesn't ruin your whole day. ~  Jay Wickre


I spent the day at the DC Superior Courthouse. I was called to jury duty. Jury Duty in the District of Columbia is an every two year ordeal. In fact, my joke is they should send me my summons with an anniversary card! It comes like clock work. Probably the most efficient system we have in DC! I would say for the most part no one truly loves reporting in for jury duty, but for me, today's experience created intense anxiety. 

Why should jury duty evoke anxiety? I am not sure per se, but I know what my triggers are and they center around noise and having no control of my movements and what I am allowed to do. In many ways, serving as a juror in DC is a bit like feeling imprisoned. The anxious feeling started as soon as I walked into the building, having to walk through metal detectors. The detector flagged that I had a camera in my purse. There are two things that are with me at all times..... my phone and my camera. I did not realize that cameras were not allowed into the courthouse (let's not talk about cameras on iphones, yet those are not confiscated!). Needless to say, I won't be making that mistake again! Any case, the security team held my camera for me throughout my jury duty service. When I gave them my camera, I gave it to them in a little pouch that I store it in. Attached to the pouch is a small pin of mickey mouse. Mattie got this pin while battling cancer. I carry this pin with me everywhere (the pin also has a story behind it!). One of my fears was the pin was going to get lost and I wouldn't get it back again. You would think I would have been worried about the actual camera, but in reality that is replaceable, the pin isn't. 

I literally reported to the jury duty office and within minutes, I was called to serve on a trial. Having served every two years, I have been called inside a court room before, but today was different. Today, I was automatically sent to sit within the 14 chair jury box. Meaning I was scheduled to be impaneled on this trial. How it works in DC, is that you enter a courtroom with about 50 other jurors. If they eliminate the jurors in the box through the voir dire (prospective jurors are questioned about their backgrounds and potential biases before being chosen to sit on a jury. Voir Dire is the process by which attorneys select, or perhaps more appropriately reject, certain jurors to hear a case) process, then they need back ups in order to get to a full 14 person jury. 

While these 50 jurors were being led in and directed to seats, I was watching the prosecuting attorneys. One was a woman and she appeared to have a seating chart of the jury in front of her. She was mentally studying us. While she was studying us, I was studying her and I could determine based on how she was looking at me, she wanted me on her case. Of course pointing at me and talking to her colleague was a dead give away. There was definite profiling going on and I knew this was being determined solely on how I looked. 

Meanwhile, we were introduced to the judge, who asked us 15 questions in the voir dire process. Needless to say, I had many issues with the case and when I spoke to the judge and the attorneys I was dismissed back to the jury pool. The jury pool in DC is enormous, several hundred people report to jury duty a day in DC. Any case, this was one case when being the chair of the DC licensure board gave me insights that could potentially make me bias on the case, not to mention that my uncle was a NYC police officer and detective.

Going into the court room wasn't what made me anxious. It was sitting in the jury pool with hundreds of people. You are practically on top of each other, the public announcement systems are blaring and going off all the time, I could hear jurors talking about their own drug addictions with each other, and then seeing police and US Marshalls roaming around was more than enough. Honestly if I wasn't dismissed this afternoon, I wasn't sure I was going to make it any longer. 

It seems fascinating to me that stress and trauma in one place can translate over into another. But the anxiety I felt within the hospital, resurfaced today. Though I have been home for several hours, I still feel shaky and as if my heart is going to jump out of my chest. I have had these issues since Mattie died and if I wasn't assessed by a cardiologist, I would be in a panic right about now. But I know this is mind over matter, and I have to just rationalize with myself. Nonetheless, I mention this because one wouldn't think Mattie's cancer battle and jury duty would have any thing in common. Yet everything about Mattie's cancer impacts all aspects of my life. I try to protect myself from certain situations now that I feel could trigger my anxiety, but jury duty is not one that I have any control over. 

Mattie's battle is over, Mattie died, and yet the aftermath of both still wage their own war inside of me. It takes a lot in certain circumstances to keep it together, and today was just such an occasion.   

Wednesday, February 5, 2014

Wednesday, February 5, 2014

Tonight's picture was taken in October of 2008. By that point, Mattie had endured almost three months of chemotherapy and was awaiting his first limb salvaging surgery. That particular day, Mattie received this huge basket from several of my students in celebration of Halloween, which was fast approaching. When Mattie was alive, I tended to post more upbeat photos on the blog and pictures which displayed our appreciation of our care community's generosity and support. Nonetheless, the photo I am showing you was all too real. Mattie suffered many down days, a great deal of depression, and honestly who could blame him. He was being pumped up with toxic chemicals, he couldn't leave the hospital, and he lived in social isolation. Let's also not forget the physical pain he was managing! If that wasn't the perfect breeding ground for depression, I don't know what would be.


Quote of the day: If you know someone who’s depressed, please resolve never to ask them why. Depression isn't a straightforward response to a bad situation; depression just is, like the weather. Try to understand the blackness, lethargy, hopelessness, and loneliness they’re going through. Be there for them when they come through the other side. It’s hard to be a friend to someone who’s depressed, but it is one of the kindest, noblest, and best things you will ever do. ~  Stephen Fry


We can't always understand why someone feels the way that he or she does. I know at times our family, friends, and colleagues may perplex us. But that is just it, feelings are not always rational. Nevertheless, a feeling is a feeling, and shouldn't be negated. If we can't understand someone else's feelings, it is most likely because we aren't looking at the issue from their vantage point. When in doubt, I always go back to my psychological hero, Carl Rogers. The father of humanistic psychology, who believed that in order to grow and develop one needs empathy within their environment. Which is in essence to be listened to and understood, yet Rogers felt that to truly empathize with someone we have to feel "as if" we are like this other person. We have to step inside his or her shoes per se. Sounds easy to do, but it actually isn't at all. It takes a lot of time, skills, patience, and the ability to actively listen to achieve Rogerian empathy. Listening doesn't mean that you remain quiet and can zone out! It means you are listening, processing what is being said, trying to understand how what is expressed is affecting this person's life and then package that all together with a meaningful response and perhaps another question. The beauty of empathizing is it inspires open and honest communication. 

I think feeling misunderstood and not listened to are top reasons why a person may feel disconnected and depressed. Depression is by far one of the top three mental health concerns in our society today. It is actually no surprise if you dig deep to understand the origins of it. Which in my opinion is based on a long term pattern of someone not feeling heard, understood, and connected to others. 

In the midst of this grey and very wet day in DC today, I had several email exchanges with people. Certainly expressing empathy electronically isn't as easy as face to face communication, yet it can be done. I wasn't purposefully trying to be empathic in my emails, but after both exchanges each person told me they felt better. They felt understood! Hearing this was the highlight of my day! Mind you I did not change the outcome, I did not solve the problem presented to me, but what I did do was I listened and shared my feelings about what I heard. I am happy I had these chats today because it reminded me of what is important within friendships and relationships, and at the core, we all need connections in which we are valued, heard, understood, and in which our feelings matter.    

Tuesday, February 4, 2014

Tuesday, February 4, 2014 -- Mattie died 230 weeks ago today. 

Tonight's picture was taken on November 14, 2008. Mattie was in the PICU recovering from his second limb salvaging surgery which he had the day before. I know I snapped that photo at the time because what I was seeing was noteworthy! It was overwhelming to imagine just how many ivs were connected to Mattie to manage his pain, not to mention drainage tubes coming out of his body at each surgical sight. It was heart breaking to see Mattie like this and even worse to hear him waking up from this surgery. In the midst of this great turmoil, we always had Mattie's origami cranes with us. A set was hooked onto the iv pole and the other beautiful set of 1000 cranes was hanging right over his bed. To this day both sets of cranes remain hanging in Mattie's room at home. 


Quote of the day: It was one of those times you feel a sense of loss, even though you didn't have something in the first place. I guess that's what disappointment is - a sense of loss for something you never had. ~ Deb Caletti


My reaction to this quote when I first read it was thorough confusion. At least confusion as it would apply to a parent who lost a child to cancer. Our sense of loss is REAL and we most definitely lost "something in the first place." But stepping back slightly further, I realize that Caletti's quote makes perfect sense. The problem with losing a child (as if there is ONLY one problem!!!) is that the losses continue thorough one's life. As I compare myself to other moms, moms who parent Mattie's friends, I see that I have missed hundreds if not thousands of things such as: Mattie's first communion, school concerts and events, Mattie's graduation from fifth grade, Mattie's first year of middle school, and all the other FIRSTs that are all too hard to mention here. Mainly because the list would be endless. I pause and realize, it is upsetting because I am grieving for something I will never have the opportunity to experience. 

I wonder sometimes when I am with people if they realize how challenging it is to hear them talk at infinitum about their children? Not everyone I interact with is this insensitive, but I have had my host of experiences. Part of me wonders what would be my equivalent? Should I sit down and then proceed to talk about Mattie's cancer battle, death, and our grieving process? Well the answer is.... of course not. That is not only a conversation stopper but somehow if I were to do this, I would be labeled as having issues and unable to let go. The thing is how does a grieving mom of an only child interact with other people now? Specifically moms who I used to know before. They tell me about their children, but I have nothing to share in return. These conversations only highlight the "loss for something I never had" and in the process it also makes me feel disconnected, out of place, and truly impacts in a negative manner the closeness I once felt within certain relationships. Which of course is yet another loss to contend with, the changing and severing of friendships. It happens, it has happened to me, and it continues to happen. Unfortunately I do not corner the market on this problem, it is a problem that I hear time and time again from bereaved parents. I just wish friends would understand the profound impact they have on us and how such changes in connections can compound our loss and already fragile state. 

Monday, February 3, 2014

Monday, February 3, 2014

Tonight's picture was taken in November of 2008. Mattie was three months into treatment and already had two limb salvaging surgeries. When Mattie was battling cancer there were times he did not want to leave his two by four of a hospital room. This made our existence very challenging and simply depressing. I know this photo was taken on a Friday, because that was the day the Georgetown Chemistry Club came to visit the children in the hospital. Typically they performed in the hallway, but that day they came into Mattie's room to give him a private show. As you can see Mattie was quite debilitated and three out of his four limbs were truly NOT usable. I am not sure how we lived through this devastation, but I do know that distractions from the chemistry club were a huge hit with Mattie. We both looked forward to Fridays! We technically had our freedom, but at times I felt like a prisoner and the PICU was my penitentiary. 


Quote of the day: Before you tell a grieving parent to be grateful for the children they have, think about which one of yours you could live without. ~ Anonymous

While working today, I received an e-newsletter from a childhood cancer organization. One of the articles in the newsletter IMMEDIATELY caught my attention. The title was, Six things never to say to a bereaved parent. I have my own top ten list but was curious to see what this mom had to say and to find out if she and I were even on the same wavelength. The answer is OF COURSE we are! She spelled out six things which I completely agree with and have expressed NUMEROUS times on this blog and even within many of our Foundation talks. Her list of what NOT to say to a grieving parent includes:

1. Time heals all wounds
2. Let go.... move on
3. Have faith
4. Everything happens for a reason
5. At least
6. Be thankful

I attached the link to the article below, in case you would like to read it for yourself. Angela's number one platitude which I too can't stand is TIME HEALS ALL WOUNDS! I wish it did, but actually it doesn't. Time may change the feelings associated with the loss, or how we have learned to cope with it, but it doesn't heal it. I actually do not know why such commentary comes out of people's mouths. I suppose because the death of a child puts all of us at a loss and makes us uncomfortable, therefore we grasp for words. But words can be either powerfully healing or bitterly painful. 

I suspect whether we are talking about Angela's, myself, or another grieving parent's list of things not to say, there is one major commonality in each of these lists. The overlap is what we don't like being judged. Platitudes are laced with judgment. Telling us that time heals all wounds, to have faith, that God gives us only things we can handle, and so forth are value and judgment based. When hearing these statements, all we really are hearing is judgment and some sort of rationalization for our loss. Totally negating our feelings and further illustrating our differences with the "healthy" world.

When I read an article like Angela's it just points out to me that my feelings and thoughts are not unique. There are other people out there like me, and I am not alone. Despite the fact that I can certainly feel alone especially when I surround myself with friends who have healthy children. Children who once knew Mattie. When I am with these moms, I am an outlier, my feelings are odd, different, and just not understandable.  

Though it isn't mentioned in this article, another word that also bothers me is the simple word, SORRY. Certainly when talking to a grieving parent and you incorporate sorry within your dialogue and explain why you are sorry, then this has context and meaning. But I know when I have tried to express my feelings and thoughts to someone and the only response back I get is this five letter answer......sorry, this is truly problematic! This one word in such an empty context, can be interpreted as dismissive. It automatically shuts down conversation, because it in essence is saying............ don't tell me anymore. Which of course is the exact opposite of what helps and supports a parent through the loss of a child. 

One thing is very clear to me, the loss of a child seems to be so life altering that parents write about it, establish foundations, and are transformed into completely different people. That is a fact, not just a Vicki speculation! Throughout the grief journey I think it is valuable to hear thoughts and feelings from other grievers because it is through these words that we see the truth, the reality, and we find an emotional home. A home in which sorrys and platitudes are checked at the front door!  

http://stillstandingmag.com/2014/01/6-things-never-say-bereaved-parent/

Sunday, February 2, 2014

Sunday, February 2, 2014

Tonight's picture was taken in September of 2008. This was a day I will never forget. I am sure if I flashed this photo in front of Peter, he would immediately remember where we were too. We were sitting in an office waiting to see an orthopedic surgeon at Memorial Sloan Kettering Hospital in NYC. Mattie had already started treatment at Georgetown Hospital by that point, but we went to Sloan Kettering to try to enroll Mattie in an experimental treatment for osteosarcoma. In order to get enrolled we had to meet with the primary investigator in person and if Mattie qualified for the study, the first infusion would need to occur at Sloan. Subsequent infusions were administered at Georgetown. I should specify that this experimental immunotherapy that Mattie endured occurred twice a week for seven months straight. It too had a host of side effects in addition to the ones Mattie endured with chemotherapy and surgeries. In any case, while we were at Sloan we made an appointment to talk with an orthopedic surgeon to get a second opinion about Mattie's pending limb salvaging surgeries. These surgeries sounded so daunting that we wanted to make sure we were making the right decision. Well this prima donna (the best description for this surgeon!), kept us waiting for two hours with a six year old in tow. When he did grace us with his presence, he only had FIVE minutes to spare with us since he had to run off to a SOCIAL engagement!!! Five minutes given the nature of Mattie's illness was hysterical and insulting. Any case, when he walked into the office to talk with us, he was talking about the surgery in quite a graphic manner, with Mattie present. I literally stopped him from talking and brought Mattie to the waiting room to sit with my parents and Karen. When I returned, the surgeon literally sat in his chair for two (of the five) minutes SILENT! We paid for this silence. In any case, after the silence (in which he looked thoroughly perplexed with his head in his hands), he proceeded to tell us that Mattie's situation was grave and if he were us, he wouldn't do ANYTHING. NO surgery and no treatment, but move to end of life care. You can imagine how this went over with both Peter and I. So when I see this simple photo, all I remember are the memories of sitting in that horrid office, and yet despite all of that we worked very hard to keep Mattie smiling that day. 


Quote of the day: Pain is not pathology. ~ Robert D. Stolorow


I woke up with a massive headache today and it has remained with me all day. I am used to daily headaches but several times during the month I have headaches which are so excruciating it is hard to keep my eyes open. Today was such a day. Nonetheless, I try to move through the pain and function. I have had this issue since Mattie was born, so I have had a long time to develop coping skills for it. I am left with no choice considering modern medicine is unable to assist headache sufferers like myself.  

My friend in cancer sent me an article yesterday from Psychology Today. I attached the link below in case you want to read it. The article is only a couple of paragraphs long but it makes an interesting point about the history of grief. Or should I say the history of pathologizing grief, which has been occurring for centuries. No wonder we live in the 21st century and have yet to make much progress in understanding loss and bereavement. How can we, when from generation to generation grief has been conditioned to be a taboo subject. 

But even worse than taboo, in the 12th century, if you experienced grief over the death of a loved one, you were considered SELFISH. That's right selfish!!! Selfish because instead of feeling happy and rejoicing that your loved one was in heaven and obtaining eternal life, you were instead grieving which really is the effect the LOSS has on YOU. Such an inward display of feelings was considered selfish. 

Moving passed the selfish mindset, we then transitioned into the stoic one. During the age of enlightenment, which signified the dawning of our modern world, the thinking was that sadness and grief could cause serious physical illnesses, and therefore to ward such an illness off, one needed a form of mental discipline to survive... in other words to be stoic. Not to reflect on feelings and to talk about the loss. It is NO wonder given the history of grief we are still screwed up today. 

Moving ahead to today's day and age, we continue to pathologize grief. It may not be labelled as selfish, or stoic, but it is nonetheless pathologized. Apparently one can't just grieve to grieve. Instead, the pain associated with grief is given clinical labels now such as depression and anxiety. Both are clinical issues which unfortunately are typically diagnosed by one's primary care provider and then quickly managed with a prescription. I say unfortunately because the mental health training of primary care providers is not adequate or sufficient. Certainly some forms of grief are in need of a diagnosis and clinical care. Yet, many are not. But feeling pain, feeling emotions, and expressing our thoughts and feelings to others over our loss of a loved one is considered odd and unnatural in our society. Meaning the griever is the one with the problem! I fear that with the change in the DSM-V coding (which is basically the diagnostic and clinical guidebook in our country to defining, labeling and treating mental illness), it will be much easier for a professional to label someone who is grieving with a clinical diagnosis (in other words pathologizing the issue). Thereby instead of addressing the grief at hand through talking, reflecting, and learning to cope with this journey, grievers will be introduced to another host of issues...... a diagnostic label and potentially psychotropic medications. Neither of which will ultimately help the typical griever. Grieving the loss of a child is a life long process and no amount of labels or drugs can take away the inevitable. 

This article is not just a history lesson for me, it is my reality. I have constantly been labeled by friends as having a PROBLEM. I mean even early on within the first year of losing Mattie. I had people who wanted me to seek treatment, see a doctor, you name it! It is a sad commentary that we live in a world in which those around us feel the need to isolate us because we make them uncomfortable. It seems to me that our society rewards those who bottle their grief up inside! Yet bottled up grief has long term negative consequences for the individual and for those around the individual. 

There is no easy fix to this complex societal issue, but I do think the more people we interact with who have suffered a profound loss, the more likely it is that we will see that pathologizing away the problem won't work. The number one way to manage and process grief is by LISTENING to it and helping the griever keep the memory of the person who died ALIVE. 

http://www.psychologytoday.com/blog/feeling-relating-existing/201402/the-war-grief