Friday, February 22, 2013

Friday, February 22, 2013

Tonight's picture was taken in February of 2009. The boat in front of Mattie was made out of Legos and he worked hard with Peter to construct it. In 2008 and 2009, Mattie must have built EVERY Lego kit possible. Legos was our source of sanity and though Mattie did not enjoy talking to others while he was battling cancer, he always responded to a comment or question about his Lego designs!


Quote of the day: The cure for anything is salt water – sweat, tears, or the sea. ~ Isak Dinesen


This afternoon I went out to lunch with a man who has been friends with my family since I was in high school. Together we have gone through his and our own ups and down. Having long term friends in Los Angeles is really quite a feat. I am not sure why this isn't commonplace. Perhaps it is the transient nature of the city or perhaps the more plastic and surfacey nature of the Hollywood culture. I have no explanation other than I know it is a rarity.

When I was living in Los Angeles during my high school years, I recall going out to dinner with this man and my family on a weekly basis. This tradition continues, since my parents continue to meet up with him weekly, even though my dad and this man retired and no longer work together. In a way, they are like family with each other.

Needless to say, our lunch conversations are usually heated with some sort of lively discussion. One of today's topics was the academy awards. A topic I am not well versed in anymore. Mainly because I do not go to the movies. At one time I did enjoy going, but since Mattie got sick and then of course died, my likes and dislikes have changed. I do think trauma and surviving a trauma have impacted my movie going experience! I no longer like being in a dark room filled with people. I do not care for the overwhelmingly loud sound systems which almost send vibrations through your entire body, and most of all I am very sensitive to the content flashing before my eyes. I can't handle violence, sounds of guns, and gratuitous sex. So when you factor all of this together I am NOT your typical American film goer. My joke is that Hollywood is lucky that it doesn't rely on people like myself to make money, because it would be out of business. Yet I will go see a movie or two on occasion when I have been told that it is something I would like or that would intrigue me. But always it is a movie that has been pre-approved by someone I trust.

So today's lunch conversation was about the nature of films and why people go to the movies. My parent's friend feels that people go to the theatres for the sheer entertainment value. I laughed because with the content in today's films, I wonder what entertainment value they actually have? But this is where the debate began. I would have to say that I go to see a movie not for its entertainment value but for its artistic value. I want to be captured by a story, I want to see the connections and complexities between people unfold, grow, and develop, and most of all I want meaning, purpose, and a moral message. Few movies can provide this from my perspective but what I do know is that when a movie does provide this I find it inspiring, empowering, and it causes me to think. Perhaps it is my training and professional bent, but with each movie I see I try to put myself into the shoes of the characters before me and understand the world through their lens. By doing this, it also helps me understand myself, my view points, and my feelings. So to me a movie is much more than entertainment. In my perspective producers, directors, and writers have a responsibility before them and how a movie makes us feel, what thoughts and emotions it evokes have subtle ramifications and consequences on our lives. We are not robots or computers sifting in violence and other hateful content without consequences. These feelings and disturbances we witness for two hours on a screen must go somewhere, and unfortunately for young minds this content influences behavior!

This afternoon, while driving through my parent's neighborhood, I spotted this beautiful deer eating close to one of the houses on the mountain side (by the tree at the 6 o'clock position). It is a beautiful sight to see greenery dotted with deer. Not something I can see in DC on a regular basis.

 

 

Right near my parent's home is a patch of land where bunnies like to hang out. You can see this resident bunny out and about this afternoon. I return to DC on Sunday, so I have one more day in LA. Today was a glorious weather day, close to 70 degrees, with the sun shining brightly! The notion of returning to grayness is simply not appealing and I can see the difference in life style and culture when winters are filled with sunshine and more moderate temperatures. It just makes you feel better not only physically but psychologically.  

 

Thursday, February 21, 2013

Thursday, February 21, 2013

Tonight's picture was taken in February of 2009. As I mentioned in last night's posting, Mattie loved volcanoes. While he was home between hospital treatments, he literally constructed this volcano by hand. It was ONE MESSY process. But the messier it was the better Mattie liked it. As you can see from this picture, Mattie's face was anticipating the excitement of a volcanic eruption in our living room!








Quote of the day: One reason a dog can be such a comfort when you’re feeling blue is that he doesn’t try to find out why. ~ Unknown


As many of my faithful readers know, I am not a modern movie fan. Therefore getting me into the theatres does require a great deal of coaxing. My parents wanted me to see Silver Linings Playbook today. The movie has been nominated for eight academy awards, which again means absolutely nothing to me, especially considering that so many wonderful actors and actresses, and films for that matter, have gone unrecognized in the past!

For those of you unfamiliar with Silver Linings Playbook, here is the movie's published synopsis...........................Life doesn't always go according to plan. Pat Solatano (Bradley Cooper) has lost everything -- his house, his job, and his wife. He now finds himself living back with his mother (Jacki Weaver) and father (Robert DeNiro) after spending eight months is a state institution on a plea bargain. Pat is determined to rebuild his life, remain positive and reunite with his wife, despite the challenging circumstances of their separation. All Pat's parents want is for him to get back on his feet-and to share their family's obsession with the Philadelphia Eagles football team. When Pat meets Tiffany (Jennifer Lawrence), a mysterious girl with problems of her own, things get complicated. Tiffany offers to help Pat reconnect with his wife, but only if he'll do something very important for her in return. As their deal plays out, an unexpected bond begins to form between them, and silver linings appear in both of their lives. If you want to see the movie trailer, go to:
http://www.youtube.com/watch?v=Lj5_FhLaaQQ

Did I come out of this movie raving about it? NO! But nonetheless, I do have to pause and commend the writer for taking on the complexity of mental illness and more importantly the strategy needed to combat the hardships life dishes out to us. This movie is considered a romantic comedy, and given the nature of the disorder in question, bipolar disorder, it seems incomprehendible how such a serious matter could be laughed at or presented in such a lighter fashion. Of course, in true Hollywood fashion the outpatient therapist portrayed in the movie has a whole list of unprofessional and unethical behaviors going on that made me want to throw my hands up in the air in frustration. But factoring that out of the movie, there are several beautiful messages along the way.

The first message which I truly believe is that under the right circumstances any one of us can develop a mental illness. The second and main message which the movie beautifully illustrates is that our connections to certain people in our lives (I don't mean to a therapist, but to a friend or family member) can be curative and protective in nature. Certain people can bring out the best within ourselves, they can cause us to feel better about ourselves, act differently, and in essence change the course of our future. It is these individuals who help us stay positive and have a shot at a silver lining! Which is easier said than done!

The interaction between the two main characters in the movie, both of whom have mental health issues, was actually very powerful and though their issues were different they understood what it felt like to be out of control of their own actions, thoughts, and behaviors. It is through their emotional bond and connection that true change was possible. YES I truly believe that one person who really believes in you and your potential can turn your life around. Though I do not personally relate to the mental health issues portrayed in this movie, I can see the impact of positive relationships in my life and how they have helped me to cope with grief.  

Each one of us faces a life challenge. None of us goes untouched! The issue is different for each of us. The question is how do we decide to deal with such challenges? Certainly, it is easier to retreat, become angry, distant, and detached. But it is my hope that in these darker moments each of my readers finds his/her silver lining to help you navigate through the incredible ups, downs, pains, and heartaches that comprise life.

The sightings of the LA cappuccinos continued today! As we were driving out of my parent's neighborhood there were deer on either side of us. In Washington, DC we have white tailed deer, but the LA Caps are black tailed deer.

The LA Caps are very comfortable crossing streets in my parent's neighborhood. In many ways they own the roads and cars seem to stop to admire the deer, take pictures, and to allow them to cross the road.

A close up of one of these cuties. Unlike our DC deer, these deer have very floppy ears, a very rich brown coat, and black tails.

Meanwhile back in DC, Peter sent me this photo tonight. Patches jumped right into Peter's work bag! I think she is giving him a message. Which is either STOP working tonight or TAKE me to work with you tomorrow!!!

Wednesday, February 20, 2013

Wednesday, February 20, 2013

Tonight's picture was taken in February of 2009. Featured with Mattie in this photo was a vanilla milkshake. Mattie lived off of a few items while battling cancer and those items were: dunkin donuts, vanilla shakes, McDonald's chicken nuggets, cupcakes, Utz potato chips, macaroni and cheese, and pasta. That was IT! When people talk to me about nutritious diets for children who are battling cancer, I listen, but internally I am saying....... you have to be kidding!!!! Mattie's battle was horrific, he hated food, the sight and smell of it, therefore when he seemed to crave something no matter what it was, he got it. Mattie was practically skin and bones at the end, and therefore a balanced diet was not only unlikely to happen but it was a ridiculous notion! Also featured with Mattie in tonight's photo was a volcano kit. Mattie loved volcanoes and he particularly loved to see a volcanic eruption. Which we had that day right in the middle of the playroom. Needless to say several children came over to watch the process.


Quote of the day: Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved. ~ Helen Keller


Yesterday was an absolutely cold, grey, and rainy day in Los Angeles. However, despite the rain, I was outside and planting scrubs and flowers in my parent's backyard. The things I planted back in December are thriving, so I have continued my handiwork on this visit. My parent have a charming and elusive green hummingbird that visits their backyard and I got to see him today and other interesting birds which I do not see living in Washington, DC.

Though the sun was shining today, it was VERY windy. That wiping wind somehow takes it out of you. We walked my parent's neighborhood track this morning, through the wind, and while there we ran into two of her neighbors. One of the neighbors I never met before, but he was walking his rescue dog, and I got to hear about her life and how far she has come. It reminded me of Patches.... also abandoned and in bad shape when we found her. Yet with tender loving care, these animals can be rehabilitated to live long lives.

So the dog began our conversation and literally this fellow and I walked around the track together for about a mile. He is an older adult, and as my friend Karen jokes with me all the time, this age group relates to me! Perhaps, but I grew up in a household in which my maternal grandmother lived with us, so interacting with older adults in a way is second nature to me. Needless to say by the time our walk was over, I learned about his life and his family. In addition, he had the courage to acknowledge Mattie's loss with me and at one point I could see he had to change the subject matter because he was getting choked up about the tragedy of losing a child.

This evening we have been invited out to dinner to celebrate the birthday of one of my mom's friends. So I am signing off for today and leave you to reflect upon Keller's quote that character can't be developed in ease and quiet. There maybe some truth in that, but I have to admit that some "character" is simply hard to live with and accept.

 

Tuesday, February 19, 2013

Tuesday, February 19, 2013 -- Mattie died 180 weeks ago today.

Tonight's picture was taken in February of 2009. The staff at the hospital quickly learned that Mattie LOVED cardboard boxes. So much so that they began saving all sorts of boxes for Mattie to use for design and building. Mattie transformed boxes into haunted houses, apartment buildings, an elevator, and the list goes on. Some of Mattie's boxed designs were quite elaborate with details like a hand crafted mosaic tile fireplace, a pulley system for an elevator, and ghosts that would swing through a house on wires to frighten you when you opened the door of this boxed house structure.


Quote of the day: The darkness that surrounds us cannot hurt us. It is the darkness in your own heart you should fear. ~ Silvetris


For all my readers who are Downton Abbey fans, what can I say?!!! I wasn't prepared for last night's season finale at all since I haven't been following the tabloids and media. Occasionally a TV series comes along that intrigues audiences both young and old alike. Downton Abbey is such a series! It has something for everyone and captures a period of time that is so different from our own, and yet hones in on human frailties, sensitivities, and emotions that we can all relate to such as...... marital problems, having children, paying bills, sibling rivalry, illness, death of a loved one, jealousy, and the list goes on! The series captures your heart and your mind and in many cases these characters become part of our weekly routine. We root for the under dogs (Branson, Edith, Anna, and Bates) and despise the more manipulative characters such as Mrs. O'Brien and Thomas. I am not sure how fictitious characters could cause us such happiness or such great sadness, but they do, and last night's episode sent SO many of us reeling.

I know I turn to Downton for an escape, to see the beauty of the English countryside, to have a glimpse into what life was like in the early 1900s, and to be absorbed in a beautifully told story that evokes both emotion and history. I first and foremost am an idealist or humanist at heart. I want to see the good in people and as such I want to believe that people can be motivated and inspired for the right reasons. I wish our motivations were always for intrinsic reasons and not for extrinsic rewards such as money. I am truly perplexed why the series would kill off a character who was loved and admired. So I went digging further into the reality of the decision. It would be easy to blame the writer of the series, but then I learned that the actual actor who played our beloved character, Matthew, wanted off the show. He wants to expand his horizons and stretch his artistic legs so to speak. All that comes to my mind is Shelley Long and her decision to leave Cheers! We know all too well how that worked out for our dear Diane Chambers!!! After her starring role on Cheers we never saw her again. I think when making decisions that are solely driven by money, one should pause. I am saddened that this actor on Downton Abbey couldn't see the joy he brought into homes each week and imagine this factor wasn't even considered when he made his decision to leave the show. In any case, we have ended season three with the deaths of two great characters. Both characters in the series were young individuals, so in essence unnatural deaths. Something I know about all too well, and though these characters aren't real, their death evokes feelings within me.

I am not sure what disturbs me more, the fact that characters were killed off on the show or that when season four starts up again, the time period will be six months after the death of Matthew (the character). The writer isn't exploring the raw emotions of grief and this I take issue with, but then again, what viewer would want to tune into such an ugly side of life!??? Which brings me back to Julian Fellowes (the writer of Downton Abbey's) comments, he felt that Matthew's character had to die because no one wanted to view happy ALL the time. I guess he thinks viewers don't tune into happy. Clearly he hasn't polled this viewer!

The one highlight in last night's depressing episode was it featured a beautiful castle in Scotland. This was the castle we toured this summer in Argyll. The name of the castle is Inveraray and some of my faithful readers may recall that Peter snapped a photo of my mom and I with the Duke of Argyll. The Duke lives in the castle and helps to support the castle by volunteering in the gift shop periodically. http://www.inveraray-castle.com/

 

I started my morning with receiving several photos from the awards ceremony that our friend Dave took at the conference. Pictured with Peter and I is Dr. Jimmie Holland. It was an honor being introduced and to receive this award from such a pioneer in the field. Jimmie is recognized internationally as the founder of the subspecialty of psycho-oncology, is Attending Psychiatrist and holds the first endowed chair in Psychiatric Oncology, the Wayne E. Chapman Chair at Memorial Sloan-Kettering Cancer Center. She is Professor of Psychiatry at Weill Medical College of Cornell University and began the first full-time Psychiatric Service in a cancer hospital in 1977 at Memorial Sloan-Kettering Cancer Center. In 1996, she became the first woman Chair of a clinical department at Memorial Sloan-Kettering.

 

 

Dave snapped an up close photo of Peter and I as we were returning to our seats after receiving the Foundation's award.

 

I received a lovely email today from Tricia, Mattie's amazing HEM/ONC nurse and our friend. Like me, Tricia loves the deer that live in the hills near my parent's home. I have nicknamed these deer the "LA Cappuccinos." My parents told me they haven't seen any deer for weeks. So I was absolutely stunned to see this family walk passed our car today. It is ironic that Tricia asked me about the deer this morning and low and behold they would show up almost on cue. I personally view this sign of nature as a gift from Mattie to Tricia and me.

Monday, February 18, 2013

Monday, February 18, 2013

Tonight's picture was taken in February of 2009. Sally, the storybook lady, came to the hospital often to work with the children. Sally is a gifted performer and has a way of getting children out of their shells and playing along to a story. Sally always came dressed up in costume to portray a key character in whatever story she was reading to the children. Sally got Mattie RIGHT AWAY and he related to her. He loved playing along with her and on this particular day Mattie was learning about the art of drums in an African American tale. Sally also always came with props and the props were appreciated by Mattie because they helped to bring the story alive.


Quote of the day: We could never learn to be brave and patient, if there were only joy in the world. ~ Helen Keller


A few years ago, I had the opportunity to meet my mom's friend Diane. It was a true treat to meet her because I knew she was a faithful blog reader and had been following our story since Mattie developed cancer. However, Diane continues to follow our journey with me and I appreciate her support. In fact when we met each other for the first time it was as if we had known each other for years. We just seemed to understand and relate to one another immediately. Since our meeting, Diane surprises me on occasion with a care package in the mail. Like me, Diane loves to garden and she grows her own fruits too! So her care packages are usually filled with all sorts of treats from fresh fruits from her garden to teas and chocolates.

When I arrived at my parents house on Sunday, I found a See's candy box of chocolates in the shape of a heart awaiting me for Valentine's Day. I love See's candy and Diane knows that, but what she may not know is the box was, from my perspective, a symbol of our friendship. I am always deeply touched when someone goes out of their way to think of me. After all life is busy and it pulls us in ten different ways sometimes. Thoughtfulness however always captures my attention and seeing this box of chocolate was a wonderful greeting to Los Angeles!

Meanwhile back in Washington, DC, Peter went to pick up Patches today at the vet. The vet insisted on putting Patches back on pain medication. We figured this was probably a good idea since Patches seems to get more agitated away from us. However, now that she is home, all medications are being stopped. Patches is loopy and unable to eat at the moment. Which is why we stopped the pain meds a month ago. They seemed to be doing more harm than good. Any case as the day wore on, Patches found her way to the couch and jumped on a new fleece blanket my parents got for her. Leave it to Patches to seek out any blanket possible. So I am glad she is back home and with her Peter, her buddy.

 

The weather in Los Angeles has been glorious so far. So much so that I have walked every morning. It is ironic that my nerve issues feel better when I am walking rather than sitting down or not moving. Later today, I was outside in my parents garden planting. The notion of planting in February is absolutely hysterical to me. When we went to the garden store today everything was fully stocked as if it were spring time on the East Coast. Needless to say the birds were singing all around me, the sky was a true blue, and I can't say I miss anything about the Washington greyness or cold!

 

Sunday, February 17, 2013

Sunday, February 17, 2013

Tonight's picture was taken in February of 2009. Featured in Mattie's hands was a pink frosted cupcake that I made him. In fact, between hospital stays, I would go home with Mattie and bake cupcakes for him. I would then put them in a Tupperware and transport them to the hospital. I used the cupcakes as incentives for him to do physical therapy. If Mattie accomplished a task Anna (Mattie's physical therapist) asked him to do, he would then earn a cupcake. So clearly what this photo illustrated was Mattie worked hard that day and the reward sat in his hands.


Quote of the day: My thoughts are free to go anywhere, but it’s surprising how often they head in your direction. ~ Unknown

 
I have been so conditioned the last couple of days to get up early, by 6am, that this morning, my eyes opened and I was ready to start working. Running the Foundation gives me a small taste and appreciation for those who run their own companies. I carry a lot of stress and pressure within me to make the Foundation successful, not only because this has become my full-time job but because Mattie Miracle is in essence about Mattie. Any failures I feel are a reflection upon myself and just like I wouldn't want to fail Mattie or let him down in any way, the same feeling translates down to the Foundation.

Therefore, at times I have a hard time stepping back and trying to relax and pace myself. Over the past year I have noticed when I get stressed out, a physical ailment seems to pop up. Now with the nerve issue I have in my arms and leg, I feel that this too is stress related. I tried to describe what this nerve issue feels like to Peter yesterday, and I used the analogy of lightning. When I feel any stress, it is as if it sends a surge of lightning radiating through my body and I can literally feel my insides shuttering as a result. Stress affects other aspects of my life as well.

When I was at the conference, I attended a poster session which assessed the effects of childhood cancer treatment on sleep. The researcher only looked at the change in sleep behavior in children, but I told her this study should be expanded to parents/caregivers, because in my opinion Mattie's battle and living within the hospital 24 by 7 impacted by ability to sleep and process information. Prior to Mattie getting cancer, I could fall asleep anywhere and at any time of day if I were tired. NOT any more. Now I have a hard time falling asleep and staying asleep and under times of stress, this behavior gets much worse. In addition, prior to Mattie's cancer I could multi-task. Meaning for example, I could read something, have the TV or radio on in the background, and even hold a conversation all at the same time. Again, NOT any more. In fact, in order to read material and truly process it, I must have complete silence, otherwise, I am just reading words with no comprehension. I have no explanation for these changes within me, other than cancer and grief. But here we are three years later and the side effects are still forever present, and more continue to be added to my repertoire.

Peter flew back to DC today, and I am happy to report that he is safely home and will be picking up Nurse Patches tomorrow. I await a full report on her status when he sees her.  

Saturday, February 16, 2013

 

Saturday, February 16, 2013

Tonight's picture was taken in February of 2009. Mattie wasn't the only one who had to do physical therapy. Mattie figured if he had to do it, so did Anna (Mattie's physical therapist) and I. As you can see Mattie had both of us down on the floor doing twister. Needless to say, Mattie had a great time instructing us and laughing at the sight of two adults working on a kid sized twister therapy board! However there wasn't much Anna and I wouldn't do to encourage and motivate Mattie to strengthen his arms and legs. Remember back then the hope was Mattie would walk again. When battling cancer you sometimes have to remain focused on smaller goals because if you look too far ahead at the bigger picture, it can be paralyzing.


Quote of the day: Being considerate of others will take your children further in life than any college degree. ~ Marian Wright Edelman


I am not sure what happened to last night's blog posting. I thought I posted it last night, but when I went on line this evening, I did not see it. So I corrected the problem. Peter and I are now in Los Angeles and left Huntington Beach this afternoon after a very productive, busy, yet successive three days at the American Psychosocial Oncology Society conference.

 

We began our morning with this glorious sunrise. It seems to me that the sky reflected Mattie Miracle colors and in my mind this was a symbol that Mattie was with us today as we received our award.

 

The sky was an absolute ORANGE and glowed. Also the clouds seemed to be dancing and calling attention to the morning's beauty over the Pacific Ocean.

 

The actual sun rising. Both the sun and the moon remind me of Mattie. From an early age Mattie always drew the sun in all of his art work and naturally as many of you know Mattie's symbol in preschool was "Mattie Moon." So in essence, though he is not physically with me, Mattie greets me in his own way every morning and every evening NO MATTER WHERE I AM! 

 

 

While I was in the exhibit hall today reading through poster presentations, I was tapped on the shoulder and greeted by Jen. Believe it or not, Jen is a former master's student of mine who went on to get her doctorate and become a pediatric psycho-oncologist. I was absolutely astonished to see her and to hear her news. Needless to say I am a proud teacher and I asked Peter to snap a picture of us. Jen was stunned to hear about Mattie, considering when I taught her, Mattie was a toddler and doing just FINE. Choosing to become a psychologist and to work with children battling cancer and their families is not an easy career choice, since it can definitely be heart breaking and rewarding all at the same time. As I told Jen, she was one of the highlights of my day.

 

 

Peter and I took a lunch break today and ate near the yellow umbrella in the background. It was a glorious weather day in Huntington Beach and I am convinced that living by the ocean has got to make one feel healthier both mentally and physically. One of the psycho-oncologists from our think tank snapped this photo of Peter and I today and I am glad she did. This was literally minutes before we went back inside to attend the awards program.

 

 

 Our friend Dave agreed to take photos of the award's ceremony for us today, however in the process he was recruited by the association to photograph the entire ceremony. I will post some of these pictures soon, however, in the mean time, Peter snapped a photo of the beautiful glass plaque given to us today.

The award's ceremony was very touching and each of the recipients really shared messages from their heart. One recipient explained that he loves what he does and loves educating others about working with children who have cancer. He also shared with the audience that his 21 year old son has autism and how much he continues to learn about love, caring, parenting, and compassion by raising a child with special needs. Another recipient shared with us the fact that her mother had Lou Gehrig's disease and what it was like to witness her mother so impaired when she was a child. A part of me feels that these individuals are so passionate about the work that they do because they have the personal insight and experiences of what it is like to be a family caregiver. These individuals were getting acknowledged for their work in oncology and yet within their speeches they integrated and elected to share very personal content that instantly captured the audience's attention!

 

After the ceremony was over, I got to speak with the mom of the child who has autism. She wanted to hug me because she said that when I spoke, what I was saying resonated with her. She acknowledged that our sons have two different diseases and yet we both get the plight of raising a child who is different and requires a great deal of love and protection. I was touched by her comments and kindness. My last interaction of the day was with a woman who is a cancer survivor herself. After her battle with cancer, she decided to go back to school to pursue a doctorate degree in order to become a psycho-oncologist. She was so moved by our award, our speech, and the fact that we got a standing ovation that she decided to come visit us in our exhibit hall booth. This woman was truly moved by our passion and as a survivor she felt she knew just how hard it is to have the energy that we pour into the Foundation. She hugged me several times, thanked me for the work that I do, and expressed her sorrow for the loss of our beautiful Mattie. Before she left, she grabbed my hand and said that our interaction was the best thing that happened to her today. The feeling is quite mutual! I will never forget some of the wonderful people I have met these last three days and frankly one of my favorite aspects of the conference was having an exhibit booth!

 

Peter and I are both absolutely exhausted. Besides taking in information, the nature of the conference is very emotional for us. So I am signing off for tonight and will share more photos with you as I get them.  





Friday, February 15, 2013

Friday, February 15, 2013

Tonight's picture was taken in February of 2009. As you can see Mattie did some art work at the hospital and we decorated the outside of his PICU room door with it. Though decorating was just one more thing to add to our moving in and discharge packing agenda, I felt it was worth it. First of all, seeing Mattie's art work, the gifts people gave him, and other decorations we accumulated over a year's time made us feel better. Sometimes these items grounded us to the outside world because living in an antiseptic two by four was beyond challenging and stressful. But our decorations also signalled to others in the hospital that this wasn't just a room, this was our home. That a child was living inside this room, and this child had interests and therefore shouldn't just be a number to them. So I decorated for MANY reasons!


Quote of the day: The best index to a person’s character is (a) how he treats people who can’t do him any good, and (b) how he treats people who can’t fight back. ~  Abigail Van Buren


This morning was busy. We began the day at our exhibit hall table. Peter and Dave manned the table together and interacted with many attendees, I joined them at about 8:45am. I am happy to say that t-shirts and drawstring bags are popular items at our table and we have gotten several inquiries and opportunities to chat about the Foundation. I transported 80 drawstring bags to California, 200 pens, over 60 t-shirts and other materials. I am THRILLED to see them moving!!! There are about 20 exhibitors in total and we are located next to rows and rows of poster sessions. So we get a lot of traffic because the exhibit hall is also where one gets free snacks and can attend poster sessions. There were 100 poster sessions today!

I went to several poster sessions and talked directly to about 10 researchers. I selected topics from art therapy to end of life care and bereavement. I truly enjoyed chatting with the art therapist and exploring some of her patient artwork. I also met a lovely researcher from Dublin, Ireland and spoke to him about a wonderful end of life care study. The study revealed that no one on the care team likes delivering the news that a patient is dying. However, when this message is delivered by the multi-disciplined care team rather than one person on the team then each member of the team feels better supported and able to help the patient and the patient's family. I remember all too well how no one really wanted to talk to me about the fact that Mattie was dying. Until Tricia, Mattie's nurse, confronted me. Keep in mind that the Hospital's policy was that this information had to be delivered to a patient's family by the treating physician. That did not happen, now looking back at this more objectively I can see why this was hard news to deliver and why people were uncertain how to approach me with Mattie's pending death.

Peter snapped a photo of a poster session that intrigued him. I surmise this interested him because assessing for "burden," caregiver stress, and depression were all components of my research work years ago. It is ironic that I investigated the stresses of caregivers of older adults while in graduate school and as a professional, and yet when Mattie was diagnosed with cancer, I got to live out so much of what I already knew from years of research. Though I was caring for a child with a life threatening illness, there are great overlaps in the types of stressors experienced by all types of family caregivers.

 

I was fascinated to see the format of poster sessions now. The last time I had to do a poster session, which was years ago, we literally were tacking up 8 1/2 by 11 inch pieces of paper on a cork board. Now with technology the illustration of data looks so much more professional. This study conducted at Sloan Kettering was not earth shattering to me at all. Family caregivers have as much if not more mental health issues as the actual patient and report high distress and need for support services.

 

 

A summary of the results! I think bullet point three is key. Caregivers of older adults or those like me who cared for a sick child do not have the time or resources to devote to their own psychosocial needs and care. We know we need to take care of ourselves, but that can't happen unless we know that our older adult or child is being cared for in our absence! Mechanisms need to be put into place to give us these much needed breaks so that we can potentially find outlets to care for ourselves.

 

In this photo you can see Dave interacting with a conference attendee. The lady in the photo is Andi. Andi is a counselor who works with Jason's Dream, a non-profit that provides financial help to children and their families battling cancer. We learned about Jason, his battle with Burkitt's Lymphoma and how this Foundation in his memory is helping grant wishes to many children. To read more about Jason's Dreams, go to: http://www.jasonsdreamsforkids.com/index.html

 

 

 

Our neighbor in the next booth, Michelle, took this photo of us today! Pictured are: Peter, Vicki, Denise, and Dave! For Peter and I, having Denise and Dave with us has been incredibly helpful. Not only from a logistical standpoint, but from a social and emotional one as well!

 

 

Dave took a close up of Peter and I With our Banner. We received a lovely compliment from one of the psycho-oncologists we worked with yesterday. He told us that the word on the street is that we are the "real deal" and we know how to get things done! I accept this title happily!

 

After morning sessions, we stepped outside of the conference center and saw Catalina in the distance. Typically it is so hazy or foggy that it is hard to see this island. But today it was crystal clear! The blue water is a therapeutic sight to see.

 

I have no idea how this particular Hyatt Regency has trained their staff. But I can say that I haven't experienced such professionalism, care, and hospitality in a very long time. They will make it very hard to leave this property tomorrow. EVERYONE is extremely helpful from the person cleaning your room to even the person who opens the door for you and wishes you a good day. They spoil you and frankly other hotels could learn a lot about the art of service by studying this hotel's model! This 29 acre property has fountains in each garden. I went around snapping photos of fountains today. Mattie would have LOVED this aspect of the hotel.

 

In the lobby of the hotel is this incredible floral arrangement. It greets you as soon as you enter the hotel, but there is also an inviting fragrance being piped into the lobby as well. I can't determine if it is like a homemade apple pie or some sort of fall harvest fragrance. Either case, the charm of the staff, being right on the ocean, and surrounded by greenery makes this hotel top on my list.

 

The conference center is connected to the hotel by this charming open air atrium. Again you can see a fountain surrounded by breathtakingly beautiful flowers.

 

The part of the complex where our hotel room is located, you can see a Koi pond. I went over to visit the koi today, something Mattie would have definitely done if he were with us. In fact, there are many families here with their children. Of course as we see them interacting with their children, it makes us pause and of course this highlights who is missing in our lives or the simple fact that we can't share this experience with him, like other parents can with their children.

 

I end tonight's posting with a picture of these glorious flowers that I fell in love with. They look like some sort of sea rose, but I don't know what they are actually called. Other than vibrant and beautiful! Tomorrow is the last day for us at the conference and at 2:20pm we will be receiving a distinguished public service award. Thank you for checking in on the blog and for sharing our Huntington Beach journey with us this week!