Saturday, June 30, 2012

Saturday, June 30, 2012

Tonight's picture was taken in June of 2006. We took Mattie for a walk on Roosevelt Island, and in typical Mattie fashion, he was our trail blazer. He was very comfortable on the Island and he particularly loved the board walk. On the board walk, we always spotted something whether it be a deer, a lizard, a snake, or a duck. The Island never disappointed, nor did Mattie's reaction to whatever we spotted!


Quote of the day: Success in the affairs of life often serves to hide one's abilities, whereas adversity frequently gives one an opportunity to discover them. ~ Horace


Last night the Washington, DC area experienced a horrible storm. Actually one of the worst storms we have seen in all the years we have lived here. The rain was so intense, there were white out conditions. We couldn't see any of the monuments around us. That was bad enough, but it was the wind that was horrific. It was so loud and intense, that it almost sounded like there was a constant whistle and rumbling outside! Typically, in DC, we rarely experience much damage, but last night, Peter went out in the pouring rain and was retrieving our flower pots which went flying all over our deck. As he was outside, all I could think of was if Mattie were alive, Mattie would have been just as excited by this natural occurrence and would have been right along side Peter.

This morning, I got to see the aftermath of this flooding and wind. The first surprise was we were being attacked by an army of ants, who helped themselves right into our home and into my kitchen. Hundreds and hundreds of ants. Though this is the last thing I wanted or expected to do today, clean up was very necessary. I learned two things from this. The first is ants dislike clorox. It kills them instantly and breaks up their scent trail, so others don't follow them in, and second, I will never keep maple syrup in a cabinet again without a ziploc enclosing it. The ants honed right into the syrup and the sight of them on and in the syrup was one I won't forget anytime soon. A sight Mattie would have appreciated, but one I could have done without.

This afternoon, I spent over an hour outside cleaning up flower and dirt debris that was flung everywhere. Some of my plants snapped off, but fortunately most are intact. It was a tiring day in the heat, but fortunately we did not lose power unlike the over one million other people in our region. Peter and I went to a shopping mall today, and what we saw there was beyond memorable. I have never seen one of our malls spontaneously transformed into a shelter. There were people sitting and lying on the floors EVERYWHERE. People even brought power cords, their laptops, and phones with them and plugged them into ANY available electrical outlet they could find. I mean any outlet. There were people sitting on the floors inside and outside of stores, and if there happened to be an outlet around, a crowd of people were sitting around these outlets! To me this looked equivalent to an airport, an airport that had numerous flights cancelled or delayed because of weather. The noise level in the mall was beyond overwhelming and all Peter and I could think is...... is this what Mattie heard when he came to the mall? Mattie hated malls because of the crowds and noise level, which are the reasons we rarely visited them.

At the mall, we had lunch together, and Peter used a phrase I hadn't heard in a long time. The phrase was.... "let's talk about it!" But it was the way Peter said it. He said it just like Mattie did. It brought back many memories for both of us! Mattie owned many of my phrases, which actually would catch some adults by surprise. Because most five and six year olds do not walk around, asking you to process your feelings and thoughts! But this was a strategy I implemented early with Mattie. He was bright, curious, and strong willed. I learned that parenting him had to be a democratic process. He needed to be heard and some rules and guidelines needed to be discussed and explained so he understood them. Naturally that did not happen with everything, since I was his parent, but when things could be discussed they were. It certainly took more energy on my part, but I believe at an early age Mattie developed an empathetic thought process, that happened because he was being challenged to logically think through consequences of his actions. So I end tonight's posting with the wonderful words of Mattie. When you are in doubt or things seem unclear with friends or family members, just turn to them and say............... "let's talk about it!"

Friday, June 29, 2012

Friday, June 29, 2012

Tonight's picture was taken in June of 2006. Mattie and Peter attended a "Day out with Thomas" with his buddy Zachary and Zachary's dad. Mattie and Zachary were in LOVE with Thomas the Tank engine, and for them it was a great thrill to see a life sized version of Thomas. Not only to see it, but to experience Thomas as the actual engine of their train. This was a memory Mattie recalled often!



Quote of the day: In prosperity, our friends know us; in adversity, we know our friends.  ~ John Churton Collins

Today's palliative care panel was a powerful experience. It helped that we met the other couple presenting with us in November, as well as knowing the moderator. As soon as the other couple entered the auditorium today, we all instantly reconnected. In fact, do you want to know what this couple said to us before we began the presentation? They said, TIME DOES NOT HEAL ALL WOUNDS!!! This couple is talking my language, and gets it. We all try to continue living and moving forward, but like this couple admits, some days you take two or three steps backward. This is the reality of losing a child, that so many people can't or do not want to understand! There is NO quick fix to grief, it takes time to heal and a whole lot of support. However, as so many of us have found.... supportive friendships drift away over time, because it isn't easy to sit in grief and help someone through it. We are a society of doers, and when we as friends can't do anything to help a griever, frustration sets in. Frustration is one thing, but living with the reality of the loss and the loss of friendships from cancer are far greater pains to live with. 

In the audience today were attending physicians, medical interns, nurses, social workers, and child life specialists. The presentation was also being recorded so it could be shared with other hospitals in Georgetown's network. Eleven familiar faces were in the audience for us, and I know that hearing Mattie's story for those who treated Mattie is not easy either. Though I may write on the blog every day, I would imagine that the things Peter and I talk about during the panel presentations maybe surprising. Because in the presentations we talk about how Mattie's cancer and death affected us as a couple and how we have had to work through this to stay connected with each other. In addition, many of my comments are very targeted so that those in the audience can understand how living in a hospital impacts a family, and what medical personnel can tweak or do differently from our experiences. For example, I am not sure even people who read the blog know that as Mattie got sicker and spent more time in the hospital, he disliked hearing noise and people talking. Which is one of the reasons, I hate talking on the telephone today. Regardless of who you are!

I have been conditioned by cancer to hate the phone! In fact, upon admission to any hospital room, the first thing I did was disconnect the hospital phone! So if Mattie hated hearing noise, which included Peter and I talking to each other, how did we as a couple communicate??! The answer in our case was by using our Blackberry. Peter and I would text message each other back and forth in the hospital room and at HOME, so Mattie never heard us talking. This may explain why the Blackberry is vital to my world and it is always attached to me. I have been conditioned to type in order to express myself! If you want to see me get upset, you just need to take my Blackberry away from me. This device hosts a personal and meaningful connection to me. It is a symbol of freedom, of self-expression, and security. My coping mechanism which was created under terrible stress, fear, and trauma.

I tell the audience all of this and much more because they have to know that when they enter a patient's room, usually on THEIR schedule and NOT ours, it may not always be the best time. They have no idea what they are walking into or what just transpired minutes ago between family members, as they enter a room. In our case, if Mattie did not like hearing Peter and I talk, I can assure you that he REALLY did not want to hear the talking of a stranger. Therefore getting to understand your patients on a deeper level, other than through their medical charts is crucial to effective treatment.

Peter and I answered a host of questions today, but like I wrote last night on the blog, one of my goals was to enlighten the attendees to the fact that the death of a child may sever the connection hospital personnel have with their patient's families, but for us, the pain continues! Yet who is to help us once we leave the hospital? For us, we spent 14 months living in the hospital, in which those around us became our caring network and family. What happened on September 8, 2009, when Mattie died? The answer is we entered the hospital as a family of three, and left the hospital with only two. I can recall that feeling like it were yesterday. Because the feeling of being only two remains within us always, as if a significant appendage was left at the morgue of Georgetown's Hospital. Yet we are fortunate that several of Mattie's care providers stay in contact with us, and though this is no longer part of their job, it speaks to the connections we all established with each other. It is these human connections that matter most to those who are grieving.

One of my final thoughts was directed to the medical interns. As they become physicians, they need to consider what distinguishes a good doctor from an outstanding one! For this is not something they will learn and ponder through  medical school! Programs which train and almost reward physicians for maintaining emotional distant with their patients! I told them if they are training at Georgetown, that they already are considered among the best and brightest, but if they truly want to make a difference in the lives of those they care for, they MUST learn to develop their human side. That sounds simple enough! But it isn't. I have interacted with a ton of physicians so far in my life, and I unfortunately can count on ONE hand those who I consider outstanding practitioners. It takes more than competency and skill to be an outstanding physician in my mind. It takes the skills which arise from the SOCIAL SCIENCES, yes the softer sciences to make them successful. Doctors need to learn to listen, try to understand, and empathetize with their patients and families whom they interact with. Certainly as a child is dying, no parent wants to hear medical jargon and facts, we want to know that you are walking this journey with us, even if the journey doesn't involve a known path. A dying child forces doctors to be vulnerable, as well as accept that they are not in control of life and the potential for a cure. Watching a child die, brings us all back to basics.... and these basics involve being authentic and human.

Thursday, June 28, 2012

Thursday, June 28, 2012

Tonight's picture was taken in June of 2006. One of our weekend rituals, was to take a walk as a family. It wasn't always to Roosevelt Island, but it did happen to be one of our favorite spots. Peter snapped a picture of Mattie and I together before crossing the bridge and entering onto the Island.

Quote of the day: Nowadays people know the price of everything and the value of nothing. ~ Oscar Wilde

Despite the heat, I must have walked 40 city blocks today. When I returned home I bumped into several people who I know either live or work in our complex. So I chatted and connected with them for a bit, and then returned to my chores.

I periodically stopped to think about tomorrow's palliative care panel, and I have been trying to get thoughts and feeling together for this experience. However, Deborah, a professional health care advocate who selected the panelists and will be moderating the panel, does not give panelists questions ahead of time. So in essence it is hard to prepare. She does this on purpose, because she wants the dialogue to be free flowing and for panelists to interact with each other. Typically I wouldn't agree to speaking in public if I do not know the content of what is being asked of me ahead of time, but having experienced this format with Deborah in November (for another palliative care conference), I saw that with the right panelists and moderators this can REALLY work beautifully.

Peter and I are presenting tomorrow with another couple we met in November. Our presentation styles are similar, and this helps us bounce ideas and feelings off of one another. What in essence Deborah is able to achieve is really almost like a talk show format. As I was sifting through thoughts today, I think my main goal for doctors, nurses, and hospital support staff to hear is that the issues we face and cope with, did not end the day our child died. That may be the last they saw us as patients and their obligations to us ended, but for us a different kind of pain began. A pain in which the solution is and can't be found in most hospital settings today. That is because the pain of grief is elusive, and just like our society, most hospitals aren't trained to deal with the feelings and thoughts associated with such traumatic loss. After all NO pill, NO IV, or surgery will cure this problem! Doctors and nurses are trained to heal, but what happens when healing isn't possible?! End of life care isn't for the meek, and because one is a doctor or a nurse, doesn't mean this person is well qualified to help you die. I saw that first hand. It takes a skilled doctor and nurse to achieve this goal! Those who ultimately helped us and continue to help us, are those individuals who aren't afraid to admit that they have no answers. That they are just as confused, upset, and angered over this as us. When you learn your child is dying and then dies, I can assure you, the last thing you want to be quoted is scientific information and medical-ese. You want a real human connection, such a connection is foreign to most doctors! It goes against their training and I suspect for some their personalities. Death and dying is solely about finding meaning, understanding, and remembering, and these feelings can only be explored through solid human connections.

Just when I think perhaps I am the only one feeling this way, I reflect on those who I have met that lost a child many more years ago than me. I remember meeting a mom at Georgetown University Hospital's remembrance ceremony last Fall (this is a ceremony the hospital hosts every fall for those of us who lost a child at the hospital). This woman, like me had an only child, and told me she lost her son TEN years ago. She enlightened me that time doesn't help, the loss of a child is always the loss of a child, and what I suspect is only those of us in this select club (the club that none of us asked to be admitted to), will truly know and appreciate what this really feels like.

Wednesday, June 27, 2012

Wednesday, June 27, 2012

Tonight's picture was taken in June of 2004. We took Mattie to Boston to visit Peter's parents. In our adventures there, Peter's parents took Mattie to Horn pond. Mattie was only two years old in this picture, but he loved ducks and Canadian Geese at a very young age. He loved to feed them, observe them, and try to get as close as possible to these feathered friends. I remember many wonderful times feeding ducks and birds with Mattie and I am happy we had these simple and special times, times which I feel could never have been achieved with overprogramming. This was something Peter and I  were always opposed to doing to Mattie. I realize as he got older, programming would come with the territory of life, but to me, these young years were about giving Mattie the time to explore his environment, become socialized within it, and become comfortable with his self naturally, NOT on my schedule.


Quote of the day: Insist on yourself. Never imitate. ~ Ralph Waldo Emerson


I received a beautiful email from Mattie's sedation nurse angel, Debbi. In the email, Debbi shared with me the fact that she had a recent dream in which Mattie was in it. She recounted the details for me and she wanted me to know that Mattie seemed happy. Debbi asked me if I have dreams of Mattie often. It is an interesting question, because for the most part, I would say my dreams of Mattie have been infrequent. However, when I went to the beach in May after the Foundation's Walk, I basically dreamt of Mattie EACH night. The dreams were very vivid and actually confusing, because I expected to wake up and find Mattie there. When I returned home after the beach, things returned back to usual, without me remembering my dreams. Well that is, until recently. For the past several nights, I have had dreams in which Mattie is talking to me, is driving in the car with me, and we are making plans. I find it fascinating that Debbi should also have a Mattie dream this week. Messages from Mattie!

I suppose on a subconscious level, my brain is working on over drive, as Peter and I prepare emotionally to serve on a palliative care panel at Georgetown University Hospital this Friday. It is one thing to share my story over the blog, and quite another thing to share it to an audience of hundreds of doctors, nurses, and other hospital personnel. Personnel who work in the same Hospital that Mattie was treated and died in. The last palliative care panel we participated on was at a conference in November of 2011, and it was a very empowering experience for us. It is my hope that Friday is the same. Having a forum to discuss our thoughts, feelings, and insights about the death of Mattie and how it impacts our marriage, our lives, and our future are rare gifts. We are serving on a panel with another couple we met in November, a couple who lost a child in the Neonatal Intensive Care Unit. Though our stories are different, the ultimate feelings of loss, isolation, anger, and frustration about the future are QUITE similar. In fact, when we first met this couple in November, we took to each other like chocolate syrup and milk. We got each other immediately and all of us are vocal about our feelings and how these feelings are not always understood, appreciated, or allowed to be expressed in our everyday lives.

I had the opportunity to spend a good portion of my day today with my friend, Tina. When I arrived at her house, her labradoodle, Max, gave me a big friendly doggie greeting. I love animals and it has been a while since I have been around a big dog like Max. Max was great company today, and being part labrador, I got to see his retrieving heritage come to life. He, Tina, and I had a wonderful game of fetch going with him. He was beyond entertaining, and he can truly make you forget about your problems. Mattie would have been thrilled to see Max running and fetching and would have been right in the mix of things. It has been a while since a person or animal has wanted to actually play with ME. So this was in a way therapeutic in its own right. Before I left Tina's house, she gave me this cute bug shaped pin wheel. Mattie was a bug affectionato, so the bug theme is meaningful to me. As you can see I put this cute fellow right in my geranium tonight. He may migrate around my garden, but for now he is greeting me at our door.

Tuesday, June 26, 2012

Tuesday, June 26, 2012 -- Mattie died 146 weeks ago today.


Tonight's picture was taken in June of 2004. I snapped this photo of Mattie and Peter having a quiet moment together. There were SO few of those moments while raising Mattie. Mattie was constantly in motion and busy. But his antics always involved either me or Peter, which at the time seemed like a challenge. A challenge because the art of raising an only child (and yes this is an art!) is that you have to be the child's parent and in so many respects you are also your child's built in play mate. The funny part about parenthood is while going through it, I thought it was one of the hardest jobs I ever did. Caring, nurturing, educating, and helping Mattie grow and socialize were all daunting. But now looking back at it, with the knowledge I now have, I realize these were all normal and evolving challenges. Unlike our current situation.


Quote of the day: Life is a tragedy for those who feel, and a comedy for those who think. ~ La Bruyere

I began my day by driving out to Rockville, MD. At one of the recent childhood cancer events we have attended we connected with a national corporation who is interested in hearing more about Mattie Miracle and potentially getting involved in our events. After meeting several representatives from this corporation, I began an email dialogue with one of their managers and then sent her about five months worth of our e-newsletters to peruse through. After she read through them, she emailed me asking for a meeting. So naturally, I was very eager to accommodate her. We had a good chat today, and even brainstormed ideas and ways for her employees to potentially help us. I remain optimistic about this connection, and I realize we are engaged in a dance.

On my drive home, which takes me on major highways, I had some fascinating sightings! I first passed a beautiful buck by the side of the road. He was just watching cars zooming by, but I saw him, and had my eye on him in case he was planning on jumping onto the highway. However, by the time I switched over to the third highway on my journey, I was instantly surprised, because an amazing fawn, who looked just like Bambi, came bolting out of the bushes and came almost on the highway. It startled me because the last thing I want was to hit a baby deer. Nonetheless, seeing these beautiful creatures was a lovely surprise to my day, and naturally ones which made me reflect on Mattie.

For the past three weeks, Peter and I have been trying to convert our Internet connection from DSL to cable modem. It sounds easy enough.... you switch from one company to another. Well forget it! I have experienced all sorts of incompetency and unprofessional behavior over the last month, which makes me question how this particular company stays in business. They have frustrated me to NO end, so much so that I now know three managers in our regional office, and one in their corporate office. I have complained by phone and email, multiple times! That is how egregious their behavior is. Yesterday, I had a technician in our home for four hours. After her botched up installment, I did not have Internet access for 24 hours. Which is not a good thing for me, especially since I can't run the Foundation without connectivity. Finally today the issues were resolved, but not by this company, but by Peter. Thankfully one of us is technologically savvy and can install systems, because another 24 hours without connectivity, there would be no telling what I would have done with this company. All my complaining today amounted to one month of free service for us, which is the least they could do for us, after the headaches they have been causing me since June 10!

I would like to end tonight's posting with a message from my friend and colleague. Nancy wrote, "Each Tuesday marks another week without your precious Mattie. The end of preparation for the Walk and all of the aftermath is behind you and as you said this weekend, sometimes being alone is what we need to remember who we are. Mother’s Day and Father’s Day have passed and I was remiss to acknowledge Peter and you. In my heart and head, Mattie is your baby. You will always take care of him and when you spoke of his pictures in your wallet, I was reminded how important talking and showing our loved ones is for those left behind. Of course, when you speak of nature and finding pennies on the ground, one can think only of Mattie and his impact. I don’t think that I spoke of my feelings when you said how the Foundation has become your Mattie. It makes sense that you would be as proactive with the Foundation as you were with Mattie. He is the heart of the Foundation. He is your heart’s light. As today is upon you and you go for your walk, I know that images of Mattie will be all around you."

Monday, June 25, 2012

Monday, June 25, 2012


Tonight's picture was taken in June of 2004. Mattie was in our living room, and was playing with Mr. Potato Head. However, as you can see the yellow glasses did not land up on their rightful owner (Mr. Potato Head) but on Mattie instead. Mattie loved the many different combinations of creatures he could make with Mr. Potato Head's body. The funny part about Mattie's creations were that they did not always mimic reality. For example, some of his creatures had legs and arms coming out of their heads!




Quote of the day: May I live this day compassionate of heart, clear in word, gracious in awareness, courageous in thought, generous in love. ~ John O'Donohue


I remained at home all day today since we had some work being done there. Staying at home at times can make me feel stir crazy, but lately I have found I feel quite the opposite. Leaving home takes great motivation, as does wanting to interact with others.

While at home, I decided to order something we needed on-line. Once I completed the transaction, another screen popped up asking me to take the store's customer survey. The survey did not take very long, but one of the identifying questions on the survey asked me to indicate how many children I have. This was a multiple choice question, with various options to select from. Of course there was NO right option for me. After all, I couldn't indicate I have a 10 year old living in my home, despite the fact, that if Mattie were alive he would be that age. So the only option that made sense for me given the context of this survey, was that I have NO children. Though Mattie has been gone from our lives for two years now, this is the first time I have been faced with such a multiple choice question. No matter how I would have answered it, the feelings that arise from the response are just not good.

Loss causes a person to redefine one's self, one's interest, one's priorities, and one's outlook about the future. I have talked to many moms who have lost a child to cancer, and for all of us, I think the consensus is that the lost child is always a part of us and our family, yet depending upon the social or professional context we are in or whom we are talking to, this can alter the information we wish to divulge. For example, when I am out shopping, and  I open up my wallet to pay for an item, I have had people comment about my wallet pictures of Mattie. Naturally the store clerks have absolutely no idea that such a healthy looking child could possibly have gotten cancer and then died. But answering their questions at times is hard, because I have found given the circumstances, the nature of the interaction, and who is around us, my answer will be different. Either the answer will be short and sweet, acknowledging that this is a picture of my son, and at other times, the answer is much more detailed and explicit. Naturally I could remove Mattie's pictures  from my wallet altogether, so that such a chance occurrence and interaction doesn't occur, but in my mind I would be removing the pictures for the wrong reasons. I decided a while ago that Mattie's pictures were staying, and if they make others uncomfortable and ill at ease, then I simply can't take ownership for their feelings. Childhood cancer is a fact, it exists and tears up families. If Mattie's pictures enable others to learn more about the disease's prevalence and impact, then I would say these pictures not only have a special meaning to me but ultimately to others. My hunch is parents of healthy children look at these photos and say..... "I am lucky this isn't happening to my children!" Indeed!!!! If you have a healthy child, you in essence have received one of life's greatest gifts.

Sunday, June 24, 2012

Sunday, June 24, 2012

Tonight's picture was taken in June of 2004. Mattie and Peter were pictured with Gladys, Peter's maternal grandmother. Gladys was recuperating in a convalescent hospital in Connecticut, and we drove up from Washington, DC to spend time with her. Mattie was only two years old, but most definitely a live wire. I wanted Mattie and Gladys to have this time together, and Mattie understood that this visit was not about his entertainment and running around, but instead that we required him to stay in the room with us. With that in mind, I packed a large bag full of toys, puzzles, Legos, and other things to keep him engaged. I know Gladys had a wonderful time watching him in motion as he played. You may also notice that in front of Gladys was a colorful plate. The plate was actually one of Mattie's second birthday plates, with a red train on it. Mattie knew we were going to bring Gladys food (since like me Gladys was motivated by food), and he suggested using one of his birthday plates to cheer her up! Which was a very good idea. 


Quote of the day: Without empathy there is no way forward for civilization. ~ James O'dea


Peter and I spent the whole day at home today doing various chores. Despite the heat, we were in our garden and were visited by birds and now several butterflies. New to our deck is a tiny white spotted butterfly who has just begun visiting us this week. In fact, while eating lunch outside today, this butterfly was fluttering all around me.   

Besides our butterfly visits, Peter and I, found three pennies on the street this week. All reminders of Mattie for us. On one hand it is comforting that within our world there are objects and gifts from nature that keep Mattie's presence alive and real for us, but on the other hand, I am not sure I will ever look upon any of this as okay. Will I ever be at peace with the fact that Mattie is not a part of our lives? My hunch is NO! Will weekends as they exist now, ever be normal for us? The answer to that is also NO! I reflect upon every season, all four of which are impossible (fall - I remember school and Mattie's death; winter - I remember Christmas; spring - I remember Mattie's birthday; and summer - I remember Mattie's diagnosis), yet summer maybe the hardest one of all. Mattie was diagnosed on July 23, two days before my birthday. Once a happy month for me, July now signifies all sorts of trauma and loss. Compounded with that, summer is perceived to be... filled with vacations and families. I can assure you it becomes an internal struggle to figure out how to cope with each and every day moving forward.