Tuesday, December 10, 2013

Tuesday, December 10, 2013 -- Mattie died 221 weeks ago today.

Tonight's picture was taken in December of 2002. I just love it! The innocent curiosity of looking at the snow. In fact, if Mattie were alive today, he most definitely would be doing the same thing. The front door would be open and he would be checking out the snow. More likely he wouldn't only be watching he would be in the snow, but you get the point. Mattie lived in his "tot wheels" back then. Though Mattie was a late walker, he gravitated to this tot wheels because it gave him instant mobility. Not only did he get around, he flew around on this thing. I still can't get over how he maneuvered through corners and tight turns. But Mattie did it with ease. Mattie never crawled and learning to walk also wasn't of interest to him. I think what he wanted to do was run, and by the time he learned to walk, he was moving around like the wind.


Quote of the day: Don't be afraid your life will end; be afraid that it will never begin. ~ Grace Hansen


I sometimes wonder who predicts the weather in Washington, DC. Schools were closed and so was the government. The city came to a grinding halt due to the snow storm. Except there was one big problem with all of this!!! Where was the snow???? In Washington, DC we received about a half of an inch and keep in mind that it was close to 40 degrees. To top it off by 2pm, the sun came out. I really wonder about this town and the level of panic that ensues with these predicted storms. It almost paralyzes you! I grew up in New York and went to college in upstate New York, which gets a ton of snow. Somehow the north east manages snow much better than us in the mid-Atlantic region. The unfortunate part about all of this is two things. I learned to drive in Southern California. So I do not have the foggiest notion how to drive in the snow. Therefore a report of snow, does catch my attention. The second issue is that I fall victim to this DC weather insanity. So much so that I will convince myself that I shouldn't drive a car and chance it.

However, logic and reasoning took over today and when I saw the snow was stopping, read the weather updates, and saw the roads, I decided to venture out! One of the things I did today was help my friend wrap holiday presents. I have done this since 2009, the year Mattie died. It is almost like a tradition, as odd as that sounds. While at her house, I had the chance to chat with her in-laws who are staying with her. My friend's father-in-law and my mom have one very specific thing in common and that is Dewitt Clinton High School in New York. My friend's father-in-law went there as a student and my mom taught mathematics there for many years. Unlike myself, my mom is gifted in math, and apparently so much so that she inspired my lifetime friend, Karen to become a math teacher.

But here is the interesting thing. My friend's father-in-law mentioned that he loved his math teacher. As a kid I heard every practical story about the math department from my mom so I decided to ask him who his teacher was and he told me..... Mrs. Gildenberg! I knew exactly who this was! Because Mrs. Gildenberg was Emily to me. Emily was significantly older than my mom, but she was my mom's math mentor and also one of her closest friends. I spent many, many holidays with Emily, her husband, and her sister. She was a part of our family. I did not have the heart to tell her devoted student that she suffered a painful death with a cancerous blood disease. I know this because my mom was literally with her until the end. Though my mom and I don't talk about Emily now, I remember as a teenager that her death caused my mom great pain.

It seems amazing today to be talking about Emily. Here was a person before me that knew NOT Emily the person, but Emily the educator. My mom used to tell me how gifted Emily was, but to hear it from a former student was powerful. This is the beauty I think of being a teacher. Unlike any other profession. You have NO idea what minds and hearts you influence and change. Emily may be gone, but her memory, her skills, and her presence continues to live on in her students. Teaching someone a skill has got to be one of the greatest gifts we can give another person. 

Switching gears, today I received the link below from the American Psychosocial Oncology Society (APOS). APOS is the national organization the Foundation became connected with this year. In February 2014, we will be hosting our second think tank at their conference. APOS gave us the opportunity to let their membership learn more about Mattie Miracle and our continued connections.  

http://cmg-apos.informz.net/admin31/content/template.asp?sid=35177&ptid=952&brandid=4352&uid=1020251434&mi=3677081&ps=35177

Monday, December 9, 2013

Monday, December 9, 2013

Tonight's picture was taken in December of 2003. Peter snapped a photo of Mattie and me on a flight to Los Angeles. Mattie was a year and a half at that time and was a bundle of energy. I had a whole bag of tricks with me because Mattie was FULLY ON for a five hour flight. No napping! We did everything from Legos, puzzles, books, and hot wheel cars together! Unlike myself, Mattie loved to fly and found traveling a big adventure.

Quote of the day: Plan out your life on paper but live your life by your heart. ~ Warren Demike


Peter flew to Boston yesterday. His flight wasn't cancelled and thankfully made it there safely. Of course there is no telling whether he will get back tomorrow given the predicted snow up and down the Eastern seaboard. Certainly in Peter's career history he has had to do a lot of traveling. He went on trips before I had Mattie, in fact at one point in our marriage Peter worked Monday through Thursday in Tampa, FL. We only saw each other three days a week, and this went on for at least a year. When Mattie was born, Peter also traveled, and not to places around the corner. Try Africa and Bangladesh on for size. While Peter was working, I was pursuing various degrees, working, writing a dissertation, and then of course raising Mattie. We are used to being busy and we are also used to being apart at times. Typically this isn't a problem. However, with the death of Mattie, the separation from each other is quite a bit harder. Our home is quiet now without Mattie and Patches. But when only one of us is living in it, it takes on a whole different life of its own.  

As a child, I can recall having a very busy home. With many family and friends always visiting. There just seemed to be a lot of gatherings. Peter's home in Boston was exactly the same. We grew up in homes that were hubs. I think it was my expectation as I grew up and became an adult that our home would be like what we experienced growing up. Unfortunately that isn't the case, and in fact it is the exact opposite. I think several things account for this. First and foremost, our society is SO BUSY! I think gathering at home are not as popular as it was years ago, but I also think that with Mattie's death, our ability to socialize has changed. It is a mutual discomfort in many ways. We do not always want to socialize and others do not necessarily want to socialize with us either. This is a hard reality to face and lately I have been looking within and coming to the conclusion that I need different social outlets.

As tonight's quote implies, I spent most of the day following my plan on paper. My plan was to work on Foundation items like our December newsletter. But by 2pm, I had it. I was getting stir crazy glued to my computer. So when the going gets tough, the tough go shopping. All kinds of shopping from groceries to crafts.  

Sunday, December 8, 2013

Sunday, December 8, 2013

Tonight's picture was taken in December of 2007. We took Mattie to the US Botanic Gardens. Mattie posed in front of a wonderful model of the US Capitol. This model was comprised of plant materials. It truly is a work of art. During the holiday season the Gardens have a wonderful display of holiday flowers, miniature dc monuments, and toy trains. We tried to take Mattie to the Gardens each December. It is a display that is noteworthy and transports you to another place and time.

Quote of the day: The best things in life are nearest: Breath in your nostrils, light in your eyes, flowers at your feet, duties at your hand, the path of right just before you. Then do not grasp at the stars, but do life's plain, common work as it comes, certain that daily duties and daily bread are the sweetest things in life. ~ Robert Louis Stevenson

The Compassionate Friends Worldwide Candle Lighting Day is today! It is designed to unite family and friends around the globe in lighting candles for one hour in the memory of children who died. As candles are lit at 7:00 p.m., hundreds of thousands of people commemorate and honor the memory of children gone too soon. At 7pm, I lit a red colored candle in honor of Mattie.

Last night, Peter and I went to the US Botanic Gardens with our friends in cancer, Ilona and Attila. Our friends have created a scholarship for DC students at the Gardens in honor of their son. A place their son loved to visit. As a thank you for their scholarship, our friends were invited to this private gathering. To see the Gardens at night is a very special sight. A first for me!During the holiday season the Gardens are decorated beautifully and typically when you visit them, they are packed with people. Having a private viewing of the Gardens was super special. I would say around 100 people were in attendance and also featured was wine and amazing cookies. Actually they lost me at the cookie table for several minutes. There is nothing like a home made cookie! I no longer have an excuse to bake cookies and I really don't go to holiday parties, so the likelihood of getting fresh baked holiday cookies is LOW. So last night was a treat and I had the opportunity to meet two other sweet tooth's at the table and we had fun comparing tastes and reactions to what we were sampling.

Our friends took a photo of Peter and me in front of the Capitol model. The same model that Mattie stood in front of in 2007 (above). Mattie is gone but the model still exists and comes out each holiday season.

This is a stunning representation of the US Supreme Court building. Each model is an unique masterpiece constructed on a frame of acrylic based foam. Casting resin is poured into the window cutouts, wall surfaces are finished with sand based grout and distinctive architectural details are fashioned from dried plant materials. For example, creating the US Capitol building model took over 600 hours to assemble.

There are several rooms within the Gardens, but the big open space in the center is filled with palms and luscious trees from around the world. In addition to these glorious trees, the glass roof was lit up with all sorts of colored lights. The lights reflected down on the trees. I think it would be impossible, even for the hard hearted, to visit these gardens and not feel moved by the holiday season. In fact, this was our first time back to the Gardens since Mattie was diagnosed with cancer. We haven't returned to this building for over five years. Somehow as I walked around, I imagined Mattie in each of the rooms we entered.

If the trees and models weren't enough, they also have a themed room. This year's theme was the World Fair. Models of all the famous world's fair structures were surrounding us and in and amongst these wonderful plant models were toy trains chugging away. Peter caught Percy, the green Thomas themed train, coming around the track. Kids were in awe of the trains and very excited. Many parents were running around after children and I simply laughed. I laughed because that is how I remember the gardens. I don't remember really slowing down and seeing the details like I saw yesterday.

This is what I call an amazing tree! It is HUGE but in addition to that, it is SO fragrant. I miss our home smelling like a pine tree during the holidays. But there was no mistaking this fragrance last night, it was intoxicating and I smelled it as soon as I walked into the Gardens!

My friend really wanted to give us an opportunity to experience the holiday season in our own way, and I would have to say this definitely accomplished that goal. It was a spectacular, twinkling, and festive evening in and amongst the greenery. The focus was on the beauty, and I think that is why it worked so well for me.

Saturday, December 7, 2013

Saturday, December 7, 2013

Tonight's picture was taken in December of 2004. This maybe one of my favorite photos we took of Mattie during the holidays. Mattie was in his footed pajamas, which he just loved, and he and Patches were hanging around some of the presents that came to us in the mail from Peter's family. Patches naturally gravitated to boxes, after all she was a cat, but her human counterpart was Mattie. Mattie was intrigued by all card board boxes and literally they inspired him to build and create. I love this photo because it captured two very important members of our family who we dearly loved and who are now both gone from our lives.  


Quote of the day: You cannot solve a problem in the same frequency in which it was created. ~ Lynn Grabhorn


Peter and I had a long but very productive working session today with two of our key psychosocial standard team members. One of these members now officially works for the Foundation part time. We are thrilled to have Mary Jo on board, who brings not only her expertise and skills to us, but her compassion for children and their families with cancer. Peter and I met with Mary Jo and Lori for about seven hours today. We worked solidly and truly were able to sift through a great deal of material that was sent to us by all four working groups. Keep in mind that these group were only established in February during our psychosocial think tank held in Huntington Beach, CA (10 months later). Here is the remarkable part about all of this. The working groups are comprised of close to 40 people in total, and none of them are getting compensated for the work they are doing. The Foundation pays for their travel and some of their expenditures when we meet at conferences, but the rest of the time, they are driven by their own motivation and passion to make a difference. A rather extraordinary commentary in today's day and age.  

The goal of this weekend is to establish some sort of draft psychosocial standards document, a document which we really generated today after compiling and sifting through all the materials we received so far. Upon completion of our meetings this weekend, we will then send this draft document back to the working groups for them to continue to provide evidence in support of what is being proposed.

Currently there is no standard of psychological care for children with cancer in our Country. This is problematic because psychological and supportive care services varies GREATLY between treatment hospitals. Yet it is well documented that such services play a vital role in the overall process and effectiveness of health care. Therefore our ultimate goal is to provide a set of minimum standards that all treatment facilities should offer their pediatric patients and families. It is a challenging task because what we are recommending can't be pulled out of a hat, it has to be based on research evidence or expertise and consensus among psycho-oncologists. We could have tried to accomplish this task over the phone or by computer but it honestly wouldn't have worked out as well. We really needed to be face to face, working off the same documents and drafting a single document projected on a screen in front of us.

We are taking a break for today and will resume tomorrow. This evening Peter and I are joining our friends in cancer at an event at the US Botanical Gardens. As many of my readers know, I became connected to Ilona, a mom who lost her son to cancer, in June. Ilona and her husband established a special scholarship fund at the Botanical Gardens this year in their son's memory. As a gift from the Gardens, they have been invited to a private event in which we will have the opportunity to see the Gardens decorated for the holidays before it is opened to the public. The Botanical Gardens does a beautiful job of decorating, with holiday trains, plants, and special Washington, DC structures comprised of plant materials. I hope to share some photos with you tomorrow from this special event. Peter and I remember taking Mattie to the Botanical Gardens during the Christmas season. It was something he absolutely loved and naturally for me being in a warm and humid environment during December is a rare treat! Ilona's son loved this holiday display too, something we both have in common. It is Ilona's hope that this venue gives us a chance to enjoy the holiday season on some level, since we both realize the challenge of this task. A task that doesn't get easier with time.   

Friday, December 6, 2013

Friday, December 6, 2013

Tonight's photo was taken in February of 2004. It had just snowed and look at Mattie's eyes as he was staring right outside of our front door!!! Mattie was fascinated and intrigued, after all in Washington, DC it doesn't snow often. Mattie was a year and a half in this photo and I still have that cute hat and mittens. They were one of our favorites. Mattie really did not like wearing a coat, hat, and mittens, but he was motivated if it meant he could go outside and play. Mattie took to snow immediately, he needed no time for adjustment. He just had an understanding for the fun, exploration, and adventure one could have with this white stuff.  


Quote of the day: Don't forget, a person's greatest emotional need is to feel appreciated. ~ H. Jackson Brown Jr


Today is a grey, raining, and depressing looking day in Washington, DC. The Foundation is having a busy weekend. Starting this evening we are meeting with two of the psycho-oncologists who are working closely with us on establishing a psychosocial standard of care. We will be working all day on Saturday and Sunday in hopes of combing through all the data we have gathered so far. This is really an ominous task, because you wouldn't believe all that we have compiled so far. We have four working groups, and in total there are 40 professionals working on this project. It truly is remarkable to see how far we have come from our psychosocial symposium we hosted on Capitol Hill in March of 2012. We connected with an amazing and motivated group of professionals who are just as committed as we are to developing a standard. Which is NO easy undertaking.

Since I will be working all weekend, I had a day filled with chores. One task which I wasn't expecting was to go to our local shopping mall. Believe it or not, MORE CANDY has come into Mattie Miracle, and I met my friend at the mall so that we could transfer candy from her car to mine. One batch of candy came from Mattie's elementary school. Apparently they assembled 50 goodie bags and brought them to chapel this week and blessed the bags before giving them to us. The notion of this is lovely and hopefully the children who receive these goodies at the hospital will feel the healing wishes and prayers attached to these bags.

Alexandria City, VA is a fascinating place. It just isn't possible to traverse around this town without bumping into people you know. A foreign concept for me living in DC!!! Any case, while my friend and I met at the mall, we ran into another friend and her daughter. So though my day was filled with one task after another, it was lovely in the midst of all of this to run into friends unexpectedly. Needless to say while I type this, I have a trunk filled with candy AGAIN!!! Wow on so many levels.
 

Thursday, December 5, 2013

Thursday, December 5, 2013

Tonight's picture was taken in January of 2005. Mattie was two and a half years old here and by that point LOVED bath time. Actually bath time with Mattie could last over an hour. It wasn't the washing part that Mattie loved, it was playing in the water and bringing toys into the bathtub that inspired him. When Mattie was a baby and a toddler, he hated water and getting cleaned up. However, in time he adjusted to the process and then of course found a way of making it interesting. Mattie was very focused on vehicles of all kinds and during bath times Mattie would take a few in the tub with him. With Mattie, life was NEVER boring!


Quote of the day: Life's not that simple. Not so easy to move on when the anger you've got is what keeps you going. ~ Rachel Ward


Perhaps tonight's quote applies to me, since I am certainly aware of the anger within me. I will give you an example about anger as it relates to my day today. Depending upon the time of day, I tune into different radio stations. In the morning, I listen to country music. Either you like country music or not, but I suspect mental health professionals are drawn to this music because it tends to talk about emotions, life's adjustments, the dysfunction between people, and loss. This morning the radio station I usually listen to had their St. Jude Children's Research Hospital radiothon. The station does this every year at this time, and I am well aware of this. Each year when I listen to parts of this radiothon, it bothers me. It bothers me for various reasons. Clearly it is an emotional ride to listen to parents discuss their child's cancer battle and their fears. Fears which I understand all too well, but I think what angered me today is how St. Jude's is marketed.

It seems like everyone and his cousin raises money for St. Jude. Certainly it is a remarkable treatment facility that does innovative research and whose research eventually helps kids around the world. However, the hospital is touted as being FREE to its children and families and that it is the BEST place to receive treatment for cancer. BOTH facts may indeed be true, but NOT every child and family can get access to St. Jude. It isn't like you can show up on their doorstep, or call one of their physicians and your child can get treated there!!!! It DOESN'T work that way, it isn't that simple. Which is why I get angered. The radio show's local support base is calling in with pledges ALL DAY supporting St. Jude rather than a local hospital and treatment center. I know this happens because of how this facility is marketed, but God forbid one of my local readers has a child diagnosed with cancer, guess what??? You most likely won't be going to St. Jude. You will be going to Georgetown, Children's, or Fairfax INOVA. WHY????

The simple reason is NOT just anyone can go to St. Jude. You MUST be referred to St. Jude by a physician and once that happens you have to qualify for one of their trials. I repeat you have to be referred by a PHYSICIAN!!! Here is the info right from the St. Jude website, since I want to assure you I am not fabricating this:

A child must also have a referral from a physician or qualified medical professional who can provide St. Jude with medical information. Every study has specific and often different requirements. For this reason, it is important that your child’s doctor contact us. For some of our studies, children can only be accepted if they have not yet begun treatment, so encourage you to have your medical provider contact us as early as possible.

St. Jude has been instrumental in developing and improving many treatments that are now considered the standard therapy for pediatric cancer and other catastrophic diseases. If your child is not eligible for a St. Jude research study, we can help you identify a hospital near you offering an appropriate treatment program and we can provide ongoing consultation with the medical team caring for your child at that hospital.


If all of this did not anger me, then the next several lines of reasoning sent me right over the edge. So much so that I had to turn off the radio. Several parents were interviewed and we could hear their tragic stories about their children. However, each story mentioned that other hospitals did not want to treat their children. That the children had no medical hope and were told to go home basically to die. But then these families got connected with St. Jude and their children are doing fine today and are CURED!!! Now there is another hateful word, because anyone who has experienced cancer KNOWS there is NO cure. Cancer goes into remission and one may have no evidence of disease, but once you have battled cancer, the potential for other threats always exists. What I did not like about today's show was that it implied that the BEST treatment you can get your child is at St. Jude and if you want your child to have a chance at survival you have to go to Tennessee.

So taking that one step further, it would have been impossible for me to not connect the dots and wonder if Mattie would be alive today if one of his physicians referred him to St. Jude. In my heart of hearts, I know the answer is NO, that we did everything possible. But why advertise a hospital in this way!???? To me it isn't accurate and worse in my opinion people in our DC, Virginia, and Maryland area should support local treatment centers, because in the majority of cases this is where families seek services and care.

Wednesday, December 4, 2013

Wednesday, December 4, 2013

Tonight's picture was taken in December of 2006. We took Mattie to Florida for the Christmas holiday season that year. By this point Mattie LOVED the sand (prior to preschool Mattie disliked sand intensely). He loved to build and create and could spend hours doing this with us. Peter and Mattie built many elaborate sand castles on that trip, so much so that other kids on the beach came over to join them. Literally the castles were so big that you could step into them. No castle was ever completely done until Mattie and I decorated them. We would collect seaweed, shells, and rocks along the shoreline and put the finishing touches on each creation.


Quote of the day: Happiness consists not of having, but of being; not of possessing, but of enjoying. It is a warm glow of the heart at peace with itself. A martyr at the stake may have happiness that a king on his throne might envy. Man is the creator of his own happiness. It is the aroma of life, lived in harmony with high ideals. For what a man has he may be dependent upon others; what he is rests with him alone. ~ David O. McKay


Tonight's quote intrigues me and troubles me all at the same time. I certainly understand the notion that HAVING doesn't necessarily make someone happy. Specifically when the "having" here refers to money and wealth. Looking at happiness from this kind of black and white thinking, then I would agree happiness is better achieved perhaps through being and looking within one's self. The quote implies that true happiness is created by ourselves for ourselves. That others can't create it for us. Again, I get what this is saying in a very existential way, yet at the same time I disagree with this quote on many levels.

First of which is life gives us things, unexpected problems and tragedies that we must contend with. This may mean looking inside ourselves for solutions and strength but ultimately what this shows us is that we are NOT truly involved in directing our own happiness. Things happen to us, things that people say we grow from, but as I always say, I would prefer to grow less.

McKay says that "happiness consists of not having, but of being." Again I go back to what does HAVING mean?! I could argue that one's child remaining alive and healthy is having, and if that is the case, then happiness most definitely consists of HAVING!!! In fact, not having one's child around can lead to enormous discontent and unhappiness. Making it next to impossible to "live in harmony with one's ideals."

The second part of this quote I also take issue with because at the end of the day we are human beings, and our common thread is that we are social creatures. We rely on others and may even be dependent upon them at times. Certainly other people do not control our happiness, but I would have to say having social support in one's life makes a great deal of difference especially when grieving. Taking it one step further, I think when intensely grieving we sometimes invest ourselves in  the lives of certain people around us in hopes of not necessarily living their lives, but instead reconnecting with the living and trying to find a way back into the world. A world that no longer makes sense.  

I don't know about you, but I have to say that some of my more happier times in life revolved around my connections with others, sharing special moments and memories, and it is through those meaningful bonds I create my own happiness.

Out of the blue today I reconnected with a former student of mine after many years. This fellow is a very successful professional association leader and we used to have many opportunities to work together in the past. He reached out to me on Monday and today, I called him back. I figured we would chat for a few minutes, but an hour later we were still going strong. At the end of our call, he told me that I was his favorite educator at the University and he always remembers me very highly. Here is another example of bonds between people, and how their meaningfulness can bring about great happiness. I know today's call did that for me.
 

Tuesday, December 3, 2013

Tuesday, December 3, 2013 -- Mattie died 220 weeks ago today.

Tonight's picture was taken in December of 2006. It was our last day visiting Florida and I distinctly remember wanting to take Mattie to Flamingo Gardens before departing on our flight. Mattie and I loved Flamingo Gardens and Butterfly World. To me these two wonderful nature sanctuaries are must sees in Florida. I know my parents and Peter probably thought this wasn't the best plan for our last day since we would be rushed during the park visit in order to catch our flights. But I was insistent that we experience the park and I did not settle for the notion that we could ALWAYS come back during another visit. I am not sure why I was so determined, but now looking back on this photo and several others from that visit, I am happy we squeezed this into our trip. I learned through Mattie's illness that you may never get a second chance to do what you should have done in the first place.


Quote of the day: This is what you do. You make a future for yourself out of the raw material at hand. ~ Michael Cunningham


I sometimes wonder if we all look at the world through the lens of our own profession?!! Do accountants see the world in numbers, writers in words, and builders in bricks and concrete? I ask this because despite not wanting to, I see the world through emotions, feelings, and people's problems. In fact, problems have a way of making there way to my phone, email, and doorstep.

When I read tonight's quote it seemed to call attention to the kind of day I have had. Each person I interacted with today shared with me private and quite personal information about their lives, crises, and how these issues continue to plaque them into the future. I heard everything today from coping with illnesses, car accidents, the emotional and physical abuse of a spouse, and honestly the list just kept on growing. Keep in mind the people I was interacting with are NOT my clients. These are people I happened to interact with today. My intention was not to sit and chat per se, but many of my conversations lasted at least two hours or so in length. I am sure for many people, this kind of chatting and listening to other people's issues and problems could be perceived as depressing or wearing. I on the other hand do not find it that way at all. I get a great deal of personal satisfaction with connecting with people on a deeper level.  

I also find I become energized when I can connect with people on this deeper level. But in addition to energized, I learn a lot more about myself through these interactions. You can learn a great deal about life, how to survive life, and the challenges others face daily just by listening. As Cunningham's quote points out tonight, we are all tasked with making a future for ourselves given the RAW material we possess. I find that it isn't the RAW material per se that holds us back from having a future, it is our ability to accept our own RAW material. Face it, take responsibility for it, and somehow not allow it to hold us hostage. I am guilty of everything I am preaching about, but I am very self aware of how Mattie's death has impacted my life's trajectory.

Needless to say, hearing about other people's lives today is always a privilege for me. As one woman told me today, it is my aura. She says it is inviting and trusting and it is therefore easy to confide in me. Perhaps, but when I hear what others are contending with, it only further illustrates to me the unbelievable strength and resilience of the human spirit.

Monday, December 2, 2013

Monday, December 2, 2013

Tonight's picture was taken in December of 2007. That year we went to Florida for the holidays. Prior to walking around outside there was a storm and clearly the wind blew a big palm frond right off of a tree. Mattie was intrigued by this finding and we literally brought this big leaf back to our hotel room. This leaf stayed in our hotel room for our entire vacation! Mattie would have loved to pack it in our luggage to take home, but he settled on several photos of it instead.






Quote of the day: As I reflect back on my life, I have come to realize that my greatest triumphs have been born of my greatest troubles. ~  Steve Maraboli

I am not feeling well at the moment, as I am suffering with a massive migraine. So I have to limit my computer time. Pictured here is a pine tree that I repotted and decorated for my friend Mary. Mary's 85th birthday is tomorrow and this is one of the gifts I am bringing to her to help her acknowledge the holiday season. When Peter saw my tree tonight, he said that it looked like a designer tree. I do not think my photograph does this cutie justice.
 

Sunday, December 1, 2013

Sunday, December 1, 2013

Tonight's picture was taken on November 18 of 2008. It was six days after Mattie had his second major limb salvaging surgery. A surgery which removed cancerous bones from Mattie's right leg, left arm, and left wrist and replaced them with prosthetics. Mattie was hardly functioning after surgery and needless to say this greatly impacted his mood. Pictured around Mattie were his "3 angels," Linda (Mattie's child life specialist), Jessie (Mattie's art therapists), and Jenny (Mattie's art therapist). Jenny and Jessie designed the plastic bin fish tank you can see sitting on Mattie's right side. Their artistic talents were incredible. They hand designed fish and put magnets on each fish. Then they created a miniature fishing pole with a magnet on the end. The goal was for Mattie to use his limbs and catch fish. They knew Mattie loved to go fishing on the Potomac River with Peter, so they tried to simulate the experience within our PICU room. Years may go by, but I will never forget the kindness and skills of these three women.  


Quote of the day: When faced with two equally tough choices, most people choose the third choice: to not choose.
 ~ Jarod Kintz


Occasionally I go back in time to review the blog. I went back to December 1, 2008, five years ago today. I copied and pasted that posting below for you to read if interested. When I read blog postings from the time Mattie was battling cancer, I really am in awe. I am in awe because what you might not be able to decipher is my complete lack of sleep and the intense stress we were living under. Some nights I slept no more than two hours. Yet somehow I was able to string words together and be not only coherent but express what was going on from Mattie's perspective and our own.

From this 2008 posting, I can proudly report that I have changed the admissions process for HEM/ONC pediatric patients at Georgetown University Hospital. No longer do families have to check in through the admissions department. Now patients and families can go directly to the pediatric clinic and then the clinic will process the paperwork for admission. When Mattie was alive, we would first have to go to the clinic, get examined and approved for in-patient treatment, and then we would have to walk (remember after November of 2008, Mattie NO LONGER WALKED!) to the admission's department and fill out paperwork for a hospital stay. Paperwork which I had filled out countless times before, with each admission to be exact. That might not sound frustrating but when you are balancing cancer care, a sick child, and a host of fear and trauma reactions, this venture down to admissions can start another crisis.

While serving on the parent advisory board of the Hospital, I mentioned that this admission process needed to be changed. So I contacted the patient advocacy department and put my issue in writing. I was very specific and cited many examples. I even had the hospital confirm my frustrations with doctors and nurses, all of whom were equally unhappy about the chaotic process. Literally within months after advocating for this change, the change was made. I am pleased that at least other HEM/ONC families do not have to do the admissions run around.

The second issue that this 2008, posting brings up for me was Mattie's first assigned oncologist. This doctor did not relate well to Peter or me. But more importantly he did not understand Mattie or our close dynamics. As you can read below, one day the doctor confronted me to imply that Mattie's tantrums were caused by ME and our close relationship with another. You can see my initial reaction to this, which was acceptance. But after thinking that over for about five minutes, reality hit me in the head and I put an end to that insane line of reasoning. This doctor and a particular PICU nurse did not have the foggiest notion about Mattie or us and yet they were quick to label us as the problem. The problem had NOTHING to do with parenting and everything to do with medical post traumatic stress disorder. A disorder that wasn't diagnosed by the doctors but my me, and seconded by a psychiatrist! If I did not advocate for the appropriate mental health treatment, Mattie would still have been hysterical, fearful, and unable to function. Psychotropic medications were very much needed in this extreme case and to this day, I will never forgive this doctor or nurse for being so judgmental and out of touch with Mattie's condition and our situation.

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Posting from December 1, 2008

There is so much to report, I don't even know where to begin. I will start by telling you about Sunday night. Mattie had an awful night of sleep. Basically he kept me up with his night terrors until 5:30am. At which point, I awoke Peter and told him he needed to go downstairs and spend the next two hours with Mattie so I could get two hours of sleep. I felt bad doing this to Peter but if I did not get some sleep, I knew I couldn't function today. I tried to encourage Mattie to take pain medicine last night, but he is refusing all oral pain medications now. I think he understands the connection between the medicines and his night terrors.

Mattie and I got dressed and packed up to go to the hospital today. Because his wheelchair is SO bulky, I couldn't take much with me to the hospital, the rest of the things we needed went into Peter's car. Getting Mattie to the hospital today was a production and fortunately my parents helped by dropping us off at the hospital door so we could just roll right on in. We went to the clinic today so Mattie could have his check up first before checking into the hospital. We waited in the clinic from 11am until 2pm. While we were waiting to see Dr. Snyder, Mattie played with Jenny. Jenny and Mattie are building a Christmas house. While they were doing that, I went to register Mattie for admission into the hospital for treatment. This is a task that truly upsets me each time. It is such a bureaucratic waste of time and energy. Though I practically know each person in admissions now, every time Mattie comes to the hospital I have to register him. Really this would be fine if we weren't such repeat customers. But I really feel cancer patients should have a streamlined admissions process. As a parent of a child with cancer, I am so worried about everything, should I be worried about the paper work too? I got so incensed by the process (mind you I have done it lots of time before, but the more tired I get, the less patience I have for this kind of busy work) that I called our patient advocate, Julie Andrews. I will see what Julie can do about this, because in my book I want to help myself and other families dealing with this additional stressor.

When I got back to the clinic, I found that Mattie was playing nicely with Jenny, until a nurse came over and told Mattie she had to check his weight. She wanted to put him on a bed and weigh him that way. As soon as Mattie heard this he instantaneously got scared and cried uncontrollably. Then started screaming that no one was allowing him to have lunch. I negotiated with him to pick a time the nurse could come back and weigh him. He selected 20 minutes and during that time my parents went around campus and brought back a mini cheese pizza for Mattie (which is what he wanted). I had the distinct feeling that things were going to get ugly before they were going to get better today. Twenty minutes later, the nurse and Drs. Toretsky and Snyder descended upon Mattie. The whole next episode was painful to watch, much less to experience. Dr. Snyder wheeled Mattie back to an exam room, and Mattie was clinging to me. So picture me walking sideways, with his arms wrapped around my neck screaming. When we got to the exam room, we tried to explain what the doctors needed to do and why he needed to be weighed. The nurse was going to pick Mattie up and place him in the bed, and I basically told her not to touch him. I then asked Mattie to comply and stand up himself and walk to the bed to be weighed (they can weigh you in a bed, because they can zero out the bed, and when you sit on it, it can calculate your weight). Mattie went along with this, but he really did not want to sit on the bed, much less lie down on the bed for this process. During this entire time, Mattie was absolutely hysterical, wouldn't talk to anyone but me, and was inconsolable. It was a very real fear for him, not the act of a child being non-compliant or testing the waters. All the doctors left the room, because Mattie demanded they leave, and the nurse and myself were left in the room. However, Mattie just got so upset with the idea of sitting on a hospital bed, that it was almost too much to handle. So finally I asked for a scale to be brought into the room, because Mattie would be happier doing it this way rather than being confined to a bed. We finally got his weight this way. Throughout this ordeal, my parents and my friend Lorraine were in the clinic watching and hearing this emotional meltdown through the door. The interesting part is that both Drs. Toretsky and Snyder got to see a glimpse into the kind of week Peter and I have been dealing with at home. A week filled with anxieties, fear, and emotional outbursts. Both of them commended me on my patience, and then said they couldn't have handled Mattie the way I did. They also then started mobilizing and finding ways to help us through these issues with Mattie, because at this rate, I won't be able to sustain Mattie's care. This was blatantly obvious today when they saw his reaction to a simple request. I have been complaining all week about Mattie's fears and anxieties, but I guess seeing the behaviors unfold in front of you makes a lasting impression.

Mattie continued to be agitated for most of the afternoon. He had a meltdown about the type of legos I brought to the hospital, and thankfully my parents ran back home for me to bring the type of lego he wanted. Dr. Toretsky then paid me several visits in Mattie's room. The first time he visited Mattie was crying and screaming, and the second time, Mattie was asleep, most likely from all of his tantrums. Jane (Mattie's PICU nurse) at one point came in and told Mattie that he needed to stop screaming. That no one can help him with all the screaming. She told him to calm down, focus on our sound machine, and take a deep breath. They had me waiting in the hallway while all of this was taking place. Mattie did quiet down. So some things were concluded today. One, Mattie isn't really experiencing pain, he is dealing with anxiety (which is what I have been saying all along), and two, Dr. Toretsky explained that Mattie has set up a bad cycle with me. Because I was primarily responsible for his care at home and did not have a whole hospital staff at my disposal, Mattie learned how to act in such a way that would guarantee my 100% attention. I am sure that wasn't an easy message for Dr. Toretsky to deliver to me, and frankly I have mixed feelings about what he is saying. Part of me agrees, certainly my behavior impacts Mattie's. However, from a parent's perspective when your child is in fear, can't sleep, has gone through so many traumatic events, it is hard not to want to comfort him. At first I felt bad, but as I have been thinking about it, I use Sandra's (our in home nurse) acronym, WTF!? I am doing the best I can do, and I know Mattie's fears are real and I did the best I could to keep him safe, secure, and protected. Tomorrow a psychiatrist is coming up to talk with us. To evaluate the situation. Mainly because I want to help Mattie get through his fears and anxieties, I am willing to deal with this and strategize with this doctor. But I am in no mood at this point to be hearing how I helped contribute to Mattie's emotional condition.