Saturday, November 17, 2012

Saturday, November 17, 2012

Tonight's picture was taken in September of 2007. That weekend we took Mattie to Glen Echo Park in Maryland to see a puppet show. While at the park, Mattie and I went on the merry go round. Today as Peter and I were driving to Maryland to meet my college roommate (to pick up MORE candy!), we passed Glen Echo Park. As Peter was driving passed the Park, a very sad feeling came over me. As if I couldn't look at the Park. I recall walking through this Park many times with Mattie and reflecting on the past is very bittersweet.




Quote of the day: I guess by now I should know enough about loss to realize that you never really stop missing someone-you just learn to live around the huge gaping hole of their absence. ~ Alyson Noel

Tonight's quote is quite accurate. I doubt we will ever stop missing Mattie's presence in our lives. Instead, we walk around on a daily basis trying to avoid falling deep into a chasm. In fact, going to yesterday's palliative care's seminar was very enlightening because I had professionals around me who expressed empathy and some understanding for the complex life Peter and I now live. In fact, so many weren't sure how we lived through making life and death decisions for Mattie. Determining how your child will die and then hearing your child flatline, are both surreal and horrific memories to hold onto. Memories no parent should have to live with.

I spent most of the morning sorting candy. We are motivated to get this done since I am meeting Linda, Mattie's Child Life Specialist, on Monday to deliver all the candy to the Hospital. In the afternoon, Peter and I drove to Rockville, Maryland. We met my college roommate and friend, Leslie. Leslie's daughter, Faye (who is 12 years old) is doing a service learning project with us. A project I will explain in more detail in our November Foundation Newsletter. Faye collected a ton of candy and in addition to this she spent the time sorting it for me. So this saved us a great deal of time. I look forward to sharing more about our connection with Faye with you. Needless to say, our candy drive reached DC, Maryland, and Virginia this year, and it was beyond successful. We will share a grand total in pounds, along with a picture of this grand total in tomorrow's blog.

Last night, Peter and I went to see the San Francisco Ballet perform Romeo and Juliet. This is my all time favorite ballet. I first saw this ballet when I was in high school, and as soon as I heard Prokofiev's score, I was captivated. This is a composer who understood deep emotions and was able to beautifully express it through music. Romeo and Juliet is a complex ballet to perform because it doesn't only require skill, it requires the principal dancers to invoke passion and deep feelings within their viewers. Last night, Peter and I were NOT moved at all. In fact, by the end of the first act I wanted to kill both Romeo and Juliet myself and spare us from having to sit through two more acts. The costuming was disturbing, filled with peaches and salmon colors. Which are beautiful colors, but the way they were presented was overwhelming and not visually pleasing! Any case, I assumed Peter and I were just in a mood, and figured this was just another example of grief affecting our judgment. After all everyone around us was raving about what they saw and jumped up to give the dancers a standing ovation. This feeling of being different carried over to today for me. Feeling different isn't always a good thing! Therefore, I was inspired to see how The Washington Post reviewed this ballet. I don't typically agree with reviewers either, but this reviewer and I were on the same page! Reading this review made me feel so much better, because this was a dispassionate performance, that left me flat, uninspired, and disliking Romeo and Juliet. The choreographer clearly has no respect or understanding for love, pain, and the complexities of human relationships. To read the review, go to:
http://www.washingtonpost.com/entertainment/theater_dance/passion-is-missing-in-san-francisco-ballets-romeo-and-juliet/2012/11/16/4253af2c-302a-11e2-9f50-0308e1e75445_story.html

 

When I got home last night from the ballet, I felt depressed and dejected. When I was about to get into bed, I noticed something on my pillow. Keep in mind it is November! As I got closer to my pillow, I saw it was a lady bug. Not a bug I expect to see at this time of year. I took this as a direct message and sign from Mattie!

 

While sorting through the candy today, I found this white rubber mouse that someone gave to us in their candy donation. This mouse may not mean anything to you, but it means the world to me. When Mattie was two years old, he started occupational therapy. Mattie had a very rocky start to therapy. He basically was very angry. He would scratch at his therapist, have tantrums, and wasn't compliant with the therapeutic tasks we asked him to do. Over time, with a lot of work on relationship building, Mattie developed a very solid, healthy, and effective relationship with his therapist. Together they accomplished wonderful things together and Mattie was able to overcome so many of his sensory issues. After each therapy session Mattie would get to pick a prize. In his initial sessions, the prize Mattie selected was a blue rubber mouse, just like the one pictured tonight. Mattie named this mouse, "Mousey," and mousey became a special symbol to Mattie. He carried the mouse wherever he went, and in fact, Mousey is still in Mattie's room today. I was absolutely stunned to see this white mouse today, and feel this is yet another symbol to me from Mattie. This white mouse made me reflect on my occupational therapy days with Mattie and all the things we overcame together.

 

Sorting of candy is a real process in our home. It is on the floor, tables, and side boards!

 

As you can see the candy is taking over! I will be thrilled to regain our space next week, when this candy goes to its rightful new home.... the hospital.

 

We arranged the bags around our first floor in order. Basically what you are seeing here are bags that were lined up to be weighed. I will share the grand total with you tomorrow. You may not believe how many pounds we collected! Keep in mind that last year we collected 238 pounds of candy!!!

 

Friday, November 16, 2012

Friday, November 16, 2012

Tonight's picture was taken in November of 2004. Mattie was two and a half years old. As you can see Mattie was playing with one of his favorite things at the time.... Trains and particularly Thomas the Tank Engine trains. Got to love that cute smile!



Quote of the day: The great tragedy of the futility issue is the way most have written about it insist upon analyzing it as a division of power: the power of patient autonomy versus the power of medical knowledge and judgment. This approach fundamentally misses the real source of power in medicine. The power is in the RELATIONSHIP, the coming together of the afflicted and the healer, blending needs and goals with knowledge and skill to come to as good an outcome as may be possible. There can be no true healing without this relationship. The futility versus autonomy dichotomy pits caregiver against patient. Healing and caring is not a game where one side plays a trump card against the other to win. To resort to futility is to admit that the healing relationship has died or is at least severely impaired. ~ Hook, 1995


I had the opportunity to visit the HSC Pediatric Center (which used to be called the Hospital for Sick Children). Frankly I never knew this hospital even existed in the District of Columbia. So not only did I get to attend a half day training on palliative care, but I also was introduced to the resources within this care facility. HSC is in a way a transitional care facility for children who have been released from an intensive care unit, but who are not ready to go home yet. The hospital is staffed by physicians from Children's National Medical Center, however, the rest of the staff (nurses and therapists) are full time HSC employees. A certain percentage of the children being treated at HSC are wards of the state and many of the children have parents who rarely visit them for a host of reasons. So in essence the ethical challenges these care providers have are quite different from the challenges we provided the staff at Georgetown. In our case of course, we were forever present and demanded to be part of the care team. As Mattie's parents we ultimately determined the direction of Mattie's treatment. However the complexity of deciding treatment for a child, in which his/her guardian isn't present, is daunting from my perspective. I will leave it at that. For more information about HSC, visit: http://www.hscpediatriccenter.org/

At the half day seminar, I had the opportunity to hear from the following professionals:

Christy Torkildson, RN, Children's Project on Palliative & Hospice Services &
Carol Taylor, PhD, RN, Associate Professor, Georgetown University School of Nursing

Christy gave us a good overview of pediatric palliative care, breaking the myth that palliative care is synonymous with end of life care. Palliative care provides a teamed approach to help manage fear, nausea, and pain, in order to enhance the quality of a patient's life. The field is truly an infant, since it did not become a recognized part of medical care until 6 years ago. Along the way, I learned some interesting facts, such as 10% of medical and nursing textbooks used in the US cover the topic of death. Basically it is a VERY small to non-existent topic, and worse when hematology and oncology medical residents were assessed on their knowledge and training associated with end of life issues, only 20% of them felt prepared! Another shocking statistic, especially since childhood cancer is the number one disease killer in the United States.

The second speaker, Carol, presented some of the ethical dilemmas that healthcare providers face when caring for a terminally ill child. This conversation was absolutely fascinating to me. Carol is a gifted speaker, who has a way of capturing your attention. Everything she was saying resonated with me, so much so that I felt physically uneasy. What she was talking about wasn't only theoretical or clinical, for me it was REAL. Because unlike others in the room, I did have to make ethically challenging decisions each day regarding Mattie's care and particularly how he died. Carol discussed models of care with us and the notion that years ago medical doctors followed a paternalistic philosophy, meaning that the doctor knew all, and wasn't to be questioned. Thankfully that philosophy is out of vogue today, or at least it isn't popular. Mattie's first oncologist followed this old world view, which is most likely why we eventually asked to be reassigned to Kristen. Kristen followed a more collaborative model, naturally we considered her the medical expert, but she welcomed and sought out our input. Which was important, because in the end no one knew Mattie better than us!

Carol introduced us to Hook's quote tonight. I loved it as soon as I heard it because effective medical care can only be achieved when a RELATIONSHIP is established. Such a relationship builds trust, and trust is ultimately needed when allowing someone to medically treat your child. After Carol's presentation, she opened up the floor to questions. I raised my hand and gave the audience a parent perspective and reflection on what Carol presented. I do not claim that end of life decisions are easy by any stretch of the imagination.  They are torture to make and to witness! But when you trust your health care providers and feel that you are part of a team deciding your child's best care interests, then making tough and life altering health care decisions is more doable.

Peter and I were the last presenters at the seminar. We spoke for over an hour and shared our perspective and candid stories about the impact of childhood cancer on Mattie and us. There are great lessons to be learned through stories and I believe we really brought issues alive for the group today. After our presentation was over, people spoke to me for another 90 minutes. I was approached by a medical doctor, a social work, nurses, and hospice workers.

As I told the group today, all of whom were passionate about palliative care, is that they were meeting our palliative care needs by giving us the opportunity to talk, share Mattie memories, and our stories. Palliative care does incorporate people like Peter and I under their umbrella, because we are parents who lost a child to cancer. The sad part, which they all understood, is that follow up care with bereaved families is basically non-existent, and we certainly know we can't talk about Mattie issues and our grief process in our daily existence. So having such outlets is crucial.

One of the audience members asked Peter and I if we sought counseling after Mattie's death. We both explained that we hadn't and why. It is ironic, given that I am a licensed mental health professional, but it is true, given our circumstances there are some things even counseling can't solve or address. I then explained to the audience that Mattie's social worker once asked me.... "Vicki, if you go for counseling, who are you going for? Yourself, or because others deem that you should?" This was a very powerful question, and the audience got it right away. Death and grief are NOT understood or appreciated in our society. Our society wants quick fixes, and unfortunately with the death of a child there are NO quick fixes, no happy pills, no HAPPY reality. Peter and I are on a constant quest to deal, cope, and manage the loss of Mattie.

I am worn out this week, but am taking a break tonight to go see my favorite ballet, Romeo and Juliet. Such diversions are needed after talking intensely this week about cancer and Mattie's battle and death.

Thursday, November 15, 2012

Thursday, November 15, 2012

Tonight's picture was taken in December of 2006. That Christmas we took Mattie to Florida and celebrated the holidays with my parents. Mattie loved Florida, the water, draw bridges, and building on the beach. I am so happy we had these times together. This afternoon, Beth Parker, a Fox 5 News reporter interviewed me and asked to see pictures of the three of us together. The irony is around our home we have a ton of Mattie pictures, but not many on display of the three of us. So tonight I was inspired to find a photo to post on the blog that illustrated what my family used to look like. 


Quote of the day: Love is something that if you give it away, give it away, you end up having more. ~ Malvina Reynolds


About three nights ago I had a dream. In my dream, I was surrounded by candy, not UNLIKE in my real life. However, in the dream I decided to send an email to Beth Parker, who is a Fox 5 newscaster. Beth has covered Mattie Miracle events twice already and I like the way Beth reports a human interest story. That may sound easy to do, but it truly isn't. She does it with sensitivity and skill. In any case, in my dream, I wrote to Beth to tell her about our candy drive. I wanted her to know what we were up to, with the hopes that she would think this was a news worthy story. When I woke up from the dream, I was confused because I wasn't sure if I had really sent the email to Beth or whether I just dreamt about it. Nonetheless, I decided to take a chance and try to make my dream a reality. So two days ago I emailed Beth.

This morning after my zumba class, I received a voice mail from Beth. She wanted to come to our home today and "talk candy." Naturally I was VERY excited, but after an hour of exercising, I did not look like I would be ready to go on TV. I quickly put that notion aside and did the interview anyway. Amazing how cancer has changed my life and priorities. When I got home from zumba, I quickly reorganized the candy, and cleaned up boxes and bags which were EVERYWHERE.

I spent 90 minutes with Beth and her wonderful cameraman, Steve. I loved Steve's creativity and I truly think the candy inspired both of them. Beth and Steve greeted me today with a bag of candy that they contributed to the drive, and it is their candy that you can see me sorting in the news piece. They thought of everything! As I told Beth, talking about Mattie helps to keep his memory alive and this is VERY therapeutic. After all, if you could see how much candy we sorted, you would either think something is profoundly wrong with us or that it is a labor of love. Which it is!
 
It was a very exciting day for us and tomorrow Peter and I head off to the Hospital for Sick Children in DC to give an hour long presentation about the impact of a childhood cancer diagnosis on a child and a family. Our audience is health care providers. We have been working on this presentation for weeks and hopefully tomorrow it will sound coherent.

I invite you all to visit the Fox 5 link below to read Beth's story and see the news footage. I also welcome and encourage you to leave a comment below the video on the Fox 5 page. I think it is important for Beth and Fox 5 to hear your feedback!
http://www.myfoxdc.com/story/20112110/cancer-patient-mattie-remembered-with-candy-for-others

Wednesday, November 14, 2012

Wednesday, November 14, 2012

Tonight's picture was taken on November 13, 2007, Peter's  birthday! Mattie always liked to bake a cake to celebrate such an occasion. This photo captured happier times.





Quote of the day: Ask yourself: Have you been kind today? Make kindness your modus operandi and change your world. ~ Annie Lennox


Today was the last candy collection day. I expected perhaps a bag or two, but to my surprise there was more delivered and a ton to carry and sort. When we finally get the total sorted, I will take a picture with the bags so you can see the significance of this candy drive. It is almost hard to believe how much candy we are talking about!

Mattie's school has a brownie troop. One of the candy pick ups today was the contributions from this troop. Which was significant! The creativity of the kids however was very touching. On one of their candy collection boxes you can see a picture of Mattie with Patches. In addition, the children covered all the lollipops with white tissue and then they drew a face on each tissue. So the covered lollipops look like ghosts. You can see them in the box.

 

On the majority of candy bags the children gave us are beautifully drawn hand colored pictures. Don't you just love this pumpkin!?

Many of the candy bags say, "for Mattie." The children in this brownie troop never met or knew Mattie. Yet their troop leaders read the blog and know fellow parents at Mattie's school who did know Mattie. When the children wrote "for Mattie" on their bags, what they meant was this candy was given in honor of Mattie. This troop's kindness meant a lot to me because the pictures illustrate that Mattie's story has been shared and his memory remains alive in this group of children.

Tuesday, November 13, 2012

Tuesday, November 13, 2012 -- Mattie died 166 weeks ago today.

Tonight's picture was taken in November of 2008. Peter was holding a model magic cake that Mattie designed for him. It was a cake in honor of Peter's birthday. Today is Peter's birthday and four years ago we celebrated Peter's day in Mattie's hospital room. Mattie told all the Hospital staff that it was his father's birthday, and literally Mattie got everyone involved. He had Linda (his Child Life Specialist) order cupcakes and Jenny and Jessie (Mattie's Art Therapists) helped him with gifts. In fact, Peter was so touched by this model magic cake that he worked very hard to preserve it (even the candles!). This cake still sits on Peter's dresser in our bedroom.


Quote of the day: A gift consists not in what is done or given, but in the intention of the giver or doer. ~ Lucius Annaeus Seneca 

Birthdays are funny things for Peter and I. Certainly as one gets older the thought of celebrating a birthday isn't as much fun as when we were kids. But our chronological age is not what stops us from celebrating. The loss of Mattie is what causes us to pause. Recently someone told me a story of a woman I have gotten to know in passing. This woman has experienced her own set of losses. Not the loss of a child to cancer, but a loss nonetheless. Life did not turn out the way she had planned or hoped. My friend was telling me that in so many ways this woman's life is stuck. Though the nature of our issues are different, I get this stuck feeling all too well, and I suspect unless you have experienced feeling stuck from a traumatic loss, you may find yourself confused by what I am saying and instead be asking yourself.... why can't you just get unstuck?!

Yesterday I told Peter that I made reservations tonight for us to go out to dinner. Though I know he doesn't feel like celebrating, I told him he is worth it and if that didn't convince him, then I explained that I was doing this for Mattie. After the hoopla Mattie had planned for Peter's birthday at the Hospital in 2008, I figured Mattie would be very disappointed in me if we did nothing today. So needless to say, Peter agreed to go out to dinner.


I wish I could say that candy collections are over, but they are NOT! Here is today's batch that I picked up and needs to be sorted. I am delivering all the candy to the Hospital on Monday and it is my hope that by that time, it will all be sorted and weighed. At the moment I am losing space in our home, and frankly I feel like I am living in a candy store. I have a good sense of what working in a chocolate factory must smell like.

 

Here is a photo I took this afternoon. Are you getting the picture?! Candy everywhere!!! Patches is overseeing the process and she just doesn't know what to make out of all these Ziploc bags. The running total now is 82 (2.5gallon) Ziploc bags!!! But this doesn't include today's significant candy pick up! My friend Tina told me that our snack cart has inspired one local Girl Scout troop. The troop is thinking of starting their own cart at a neighboring hospital, since they enjoyed contributing to our candy drive. A lovely piece of news to receive!

 

 

 

Monday, November 12, 2012

Monday, November 12, 2012

Tonight's picture was taken in November of 2007, at the Veterans Day parade in Washington, DC. Mattie appreciated the music and seeing different branches of the military dressed in their uniforms.




Quote of the day: We often take for granted the very things that most deserve our gratitude. ~ Cynthia Ozick


In honor of Veterans Day, Ozick's quote, encourages us to pause and reflect on the meaning of this day. To all our patriots who have served, who are still serving, or died in military service, we thank them for their courage, sacrifice, and the dedication to preserving freedom and justice in our Country and the world.

It was a day of meetings today. My first meeting pertained to our May fundraiser, our annual Foundation Walk. Later in the day, I met with the chair of the counseling department at The Chicago School of Professional Psychology. Last week I gave a lecture on the trauma of childhood cancer at this Institution and now the faculty of the program have asked me to consider serving on the program's advisory board. Prior to Mattie getting cancer, I lived and breathed teaching and the education of counselors. Now my life looks a lot different. Yet as I was talking with the chair, I could see that my numerous experiences on the National level enable me to have insights that an advisory committee desires. It was nice to hear this, and of course, being the chair of the DC Licensure Board enables me to share our current laws and regulations with the School. While taking a tour of the campus, one of the faculty members recognized me. He reminded me that we served on a committee together for our national counseling association. It is a small world and I was amazed with how much this individual remembered about our committee work and time with each other. For me it was as if it happened a lifetime ago, or when I was a different person. I appreciate this direct opportunity to remain connected to the field of counselor education and in the process, I feel this will enable me to find avenues to educate mental health students on the impact and needs of children and families battling childhood cancer.

Peter and I are still sorting candy, but we can see the light at the end of the tunnel. Wednesday is our LAST collection day. So by next week, I will be able to visit the Hospital and unload all these goodies. It is NO doubt the Foundation is supplying a year's worth of candy for Georgetown University Hospital!



Sunday, November 11, 2012                                                 Tonight's picture was taken in November of 2003. We took Mattie to Leesburg Animal Farm one weekend and as you can see Mattie came face to face with a sheep. Mattie loved animals and his left hand was desperately trying to reach up to grab a hold of that wonderful wool!

 

 

Quote of the day: There are always flowers for those who want to see them. ~ Henri Matisse

 

 

Tonight's quote seems SO applicable considering the exhibit I saw today. I had the opportunity to go to the Phillips Collection in Washington, DC and out to brunch with Mattie's kindergarten teacher. Leslie and I get together on a periodic basis, and to our wonderful surprise the Dupont Circle Farmers Market was open as well today. We ventured through aisles and aisles of tents stocked with amazing produce from LOCAL farms. I have heard about this Farmers Market for years, but have never gone. I can see why it draws people from all over our area! It is that spectacular.

 

I love the Phillips Collection because unlike the Smithsonian, it is a very intimate and doable art experience. We went to see the special exhibit by Per Kirkeby, who is a Danish artist and still alive today. I have never seen Kirkeby's works, but now that I have, I must admit they are not my favorites. To me his work invokes chaos, depression, and just leaves you uninspired and flat. Leslie and I even saw a brief film in which the artist shared with his audience his thoughts and feelings while creating a large canvas before our eyes. A canvas so tall he needed a ladder and scalfolding. His thought process was just as complex as his art, which actually was no surprise and only helped to further explain what we were seeing. He explained that when he creates a painting he has no vision in mind as to what he will produce, the picture just simply evolves over time. As we watched through lapse photograpy the creation of his huge painting, it was evident that he is a harsh critic of himself and describes some of the colors his used as vile. Needless to say watching his video felt like a psychology case study rather than watching the beauty of a creator in motion.

 

Yet for Leslie and me, we tried to find the metaphorical flowers in this sea of color, shapes, and scribbles. It was almost fun in a way to try to interpret the chaos before us. It took great imagination from my perspective. As I told Leslie, sometimes you just don't want to work that hard to understand what you are seeing before you.



  

 

This painting is entitled, Inverno. This Phillips Collection exhibit is the most comprehensive survey in the United States to date of works by Scandinavia’s most highly acclaimed living artist, Per Kirkeby. Kirkeby is equally trained as a geologist and an artist, and is considered a painter of eminent sensuality, creating richly layered canvases filled with prodigious detail and animated by an unequaled material quality of color. He is not only a leading painter, sculptor, and printmaker, but also a prolific writer, poet, and filmmaker.

 

Believe it or not this painting is Untitled! Nonetheless, the subject matter in it is very clear, unlike so many of his other pieces. You can distinctly see three horses here. The exhibition features 26 expressive paintings and 11 striking bronze sculptures. Kirkeby’s paintings—some over six feet tall—are structured like geological strata, constantly in flux, moving and changing, continuously and passionately maintaining a dialogue between art and science. For Kirkeby, art, like science, is engaged in an ongoing, self-correcting process. His works incorporate all aspects of natural history, reflecting the artist’s considerable curiosity about the infinite variety of life.

 

After touring the Kirkeby exhibit, we then viewed some of the museum's permanent collection. This is Renoir's Luncheon of the Boating Party. One of my favorite paintings! This painting remains the best known and most popular work of art at The Phillips Collection, just as Duncan Phillips imagined it would be when he bought it in 1923. The painting captures an idyllic atmosphere as Renoir's friends share food, wine, and conversation on a balcony overlooking the Seine at the Maison Fournaise restaurant in Chatou. Parisians flocked to the Maison Fournaise to rent rowing skiffs, eat a good meal, or stay the night. The painting also reflects the changing character of French society in the mid- to late 19th century. The restaurant welcomed customers of many classes, including businessmen, society women, artists, actresses, writers, critics, seamstresses, and shop girls. This diverse group embodied a new, modern Parisian society. Renoir seems to have composed this complicated scene without advance studies or underdrawing. He spent months making numerous changes to the canvas, painting the individual figures when his models were available, and adding the striped awning along the top edge. Nonetheless, Renoir retained the freshness of his vision, even as he revised, rearranged, and crafted an exquisite work of art.

We had a lovely brunch and typical of teachers, when we get together, we have a plethora of things to talk about. Which was very nice and engaging. Because believe it or not I can talk about other things than cancer. Later in the day when I got back home, Peter and I went for a walk around the Potomac River. The weather felt like spring and everyone and his cousin was out walking. We were surrounded by SUN SEEKERS today and it was hard to believe it is November!