Mattie Miracle 10th Anniversary Walk was an $119,000 success!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

February 5, 2011

Saturday, February 5, 2011

Saturday, February 5, 2011

Tonight's picture was taken in July of 2003. Mattie was 15 months old, and almost walking independently. I captured him maneuvering from the staircase to the chair. Grabbing at these objects for balance and support along the way. Teaching Mattie to walk was a very humbling process. What I learned was I couldn't do it for him. He had to decide when he was ready to walk on his own. This illustrated Mattie's personality and style because he was very strong willed and wanted things to go according to his timeline, not someone else's. As a new mom, I wanted to prevent Mattie from falling and hurting himself. However, I also had to learn the importance of Mattie's self-exploration and initiative. So Mattie may have been learning to walk, but I assure you the learning was always two ways.

Quote of the day: Grief and sadness knits two hearts in closer bonds than happiness ever can; and common sufferings are far stronger than common joys. ~ Alphonse de Lamartine

Tonight's quote is not only moving, but it is profoundly true. Grief can bond people together in absolutely extraordinary ways. I am not sure this statement would have meant anything to me before experiencing Mattie's cancer and death. I could elaborate on this here, but there are certain revelations that I have learned over the course of the last three years, that I would prefer to write about in a book. Capturing Mattie's life is important to me, and as I muster the courage and strength to take on a book, I also realize that there are some very powerful stories and connections that I have made through this ordeal that deserve exploration. My blog readers know so much about Mattie's story and "our" story, but in Mattie's book I want to tell you about his incredible life as well as uncover much, much more.

Peter and I had the wonderful opportunity to go out to lunch with Robbie today. As some of my blog readers know, Robbie was one of Mattie's favorite hospital childlife volunteers. Robbie understood Mattie and he also understands Peter and I. When we meet with Robbie, I find that I am easily myself, and I do not need to mince words or sugar coat things. Needless to say, we sat together for over three hours discussing the upcoming Foundation Walk. We truly appreciate Robbie's willingness to brainstorm ideas with us, and his willingness to take on tasks and responsibilities. Sometimes talking about the Walk is challenging for Peter and I, but Robbie helps balance our thoughts, shares his insights, and motivates us at the same time. I came to the luncheon with ideas, and when I left I felt as if Peter and I had covered a great deal of ground, and also had action items to pursue. I do my best thinking while I sleep and while I am busy. I woke up yesterday focused on creating a theme for this year's Foundation Walk. As the day moved on, I was focused upon other things, but by the end of the day, it just came to me. When I shared my thoughts with Peter and Robbie today, they both loved the idea, which I will announce shortly.

Despite the rain, Peter and I walked to lunch as well as walked home. We covered about three miles. I wasn't happy about the cold, but I was most definitely happy to be walking. Upon our return, I looked outside our balcony window, and as you can see we had a huge red tailed hawk sitting in our flower box. Peter was able to grab my camera and capture this sight (with Mattie's American flag in the background), but I was very upset to see that the hawk had caught a pigeon and basically de-feathered it on our balcony and had it in its claws. As Peter reminded me, this is how nature works. I suppose that was a reality lesson I did not need to see this afternoon.


I spent the rest of the day trying, with the emphasis on trying, to clean out the walk in closet in Mattie's room. This closet is an absolute disaster, and I haven't been able to walk into it since Mattie got sick. Needless to say, this is not a one day project, and I will be returning to it tomorrow. What a weekend! In the midst of cleaning out this closet, I found shoes of Mattie's from all sorts of stages in his development. I also found cards he drew for me (which I quickly piled together and saved), and I also came across cards from a long time friend of mine. Unfortunately this friend severed our friendship after Mattie died. She told me his death was too hard for her to handle, and therefore for her physical and mental health, she had to discontinue our relationship. This is definitely another book chapter, so therefore I am not elaborating on this here, but I do want to say that re-reading my friend's cards allowed me to further see that NOTHING is forever. Including friendships, especially ones you perceived as special and close, and motherhood. When I became a mother, I thought this was a role I would have for a lifetime. Cancer taught me about that faulty notion. So cleaning out the closet is not easy by any stretch of the imagination, and I knew it was going to be tough going into this project, but I did not expect to be reflecting on additional losses tonight. Many of the items I am throwing out or donating pertain to my former life. Specifically I am seeing my professional life (text books, workbooks, notes, notebooks) coming out of the closet, I am seeing toys of Mattie's coming out of the closet, and I am seeing reminders of my role as a mom coming out of the closet. There is a lot of history in this closet, and by giving these items away or throwing them out, it is to some extent saying good-bye to who I once was. I am a sentimentalist at heart, so asking someone like me to purge things is challenging on a good day, factor in my life's circumstances, and this task is not only daunting, but it is painful.

February 4, 2011

Friday, February 2, 2011

Friday, February 2, 2011

Tonight's picture was taken in July of 2003, on the beach of Duck, North Carolina. When I look at this picture, it actually makes me laugh. I laugh because, if this was a cartoon, the bubble over Mattie's head would read...... "I have my eye on the water, and you better not be thinking of putting me down in it!" Mattie was partly fascinated by the water, but for the most part he was simply frightened. Which in reality I was okay with. If you believe a child is born with common sense, Mattie was. He had an understanding for things that could harm and hurt him, and you only had to tell him once not to touch or go near something. In that respect Mattie was easy. I never had to childproof anything, nor did I have to protect him from corners and other sharp things he could fall into. I was hyper vigiliant anyway, but in all reality, his instinct for his surroundings was always spot on.


Quote of the day: I measure every grief I meet with narrow, probing eyes - I wonder if it weighs like mine - or has an easier size. ~ Emily Dickinson


Today I joined Ann and her mother, Mary, on an adventure. The adventure was taking Mary to get her hair cut and styled. Transferring Mary from her wheelchair to Ann's car takes incredible effort and fortunately for Mary, Ann is an occupational therapist by training. Otherwise, I am not sure the average person could safely take Mary on. My role in the transfer process is totally non-existent and frankly I am surprised Ann hasn't hit me over the head yet. Because at times the whole scene of getting her mom into the car is so complicated it makes me laugh. Mary is usually right along side me laughing, and I suppose humor helps us all get through times of stress. Despite it being cold out, I know Mary enjoyed her trip out, conversing with us, and of course returning back home with her hair done.

While out, we had lunch together. Our lunch gathering grew by the time lunch was done, because our friend, Tina (the friend who hosted my birthday party at her house this summer), her daughter, and Bob joined us. Mary was quiet and eating, but I know she took it all in. At lunch we talked about many topics. However, after lunch I found myself quite upset, and I honestly did not know why. At least not initially. I went back with Mary to her assisted living facility, and sat with her for a while. Mary took a cat nap, and while she was napping, I tried reading the book I brought with me. It is a fiction book called, Handle with Care, which is about a child born with a disease called Osteogensis Imperfecta and the impact of this disease on the entire family. What I found however, was I couldn't read the book. Not because of the book itself. I enjoy books by this particular author, but I couldn't focus since something was bothering me. So I sat there and wondered what exactly it was. One of the topics discussed at lunch was summer trips and summer camp. Somehow just the notion of this was overwhelming. This is NOT part of my life. Summer trips mean nothing to me, and summer camp, which are two innocuous words, now pack a powerful punch. The punch or sting of not having a child.

In the midst of this conversation, the travel location of Hawaii came up. As we were talking about the different islands, I reflected on my last trip to Hawaii. It was like I was sucked out of the current conversation, and was transported back in time. My mind went to March of 2008, when I was in Oahu attending a counseling conference. March of 2008 seemed like an exciting time in my life professionally. I had been elected the president of a very large professional counseling association, something that I never thought I would achieve early on in my career. My leadership role officially began on July 1, 2008. So I literally had 22 days in office before my world crashed around me, and Mattie was diagnosed with cancer. Somehow I look back at this trip to Hawaii and I realize I was such a different person back then. Naturally when Mattie developed cancer, he came first and though I had the title of president, during my year in office I wasn't empowered in this role. All my other officers had to step up and fill my role. This is something that will always bother me, something that will always upset, and yet something that I had to let go of because Mattie was my priority. I don't regret that decision, I just regret that I had to even be put in such a position. Cancer had great ramifications on our professional development, and for me it has changed my whole future outlook on what I want to do.

When I got home later tonight, I was emailing my lifetime friend, Karen, back and forth. I was telling her I had a hard day, and naturally she asked why. When I told her about my reflections on Hawaii in particular she encouraged me to "hold onto the memories of the event as good ones. That July was bad, but Hawaii was good. You should be proud of that, and cancer shouldn't take that from you too." I told her it was sage advice, which she knows I am not good at following. But I wrote it down here, so perhaps I will try to absorb it.

The ramifications of cancer and Mattie's death are huge. It clouds everything and anything Peter and I do. The worst part of it however, is the disease leaves you such a changed person, and truly altered that it becomes very challenging to want to re-engage with the world again. At times I find when I do re-engage, I get hurt, which only further hones one's natural instinct to retreat and protect one's self. In these times, I say to myself..... one day at a time, and try to reset for tomorrow.

In the midst of all of this today, Tina was telling us that she is taking a group of girl scouts to the musical Wicked, which is coming to Washington, DC in June. I really enjoy most musicals, though I admit I like some more than others. Tina invited me to go with her and her group in June, and I am looking forward to hearing the music again. I used many of the songs from Wicked in Mattie's memorial video that we created for his celebration of life ceremony. Some of the songs from Wicked are haunting, and I when Mattie died, I found that I listened to the CD of Wicked often. I imagine this is one of the reasons Peter doesn't want to see the play again, the music is very linked to Mattie's memory.

I leave you tonight with a comment from Mary (Ann's mom). As I left Mary this evening, she was staring into my eyes and she told me that I have stunning eyes. I thanked her for the lovely compliment, but what I wanted to say was I have Mattie's eyes. When you stare into my eyes, you are staring into his eyes as well.

February 3, 2011

Thursday, February 3, 2011

Thursday, February 3, 2011

Tonight's picture was taken in July of 2003. This was Mattie's first trip to the Outer Banks of North Carolina, and the sand and ocean were down right overwhelming and intimidating to him. In fact, throughout that entire week's vacation, we may have ventured to the beach twice, and for very short periods of time. Mattie did not like the feel of the sand on his feet and the sound of the ocean waves crashing down on the shore scared him terribly. Needless to say, for a person who finds the beach therapeutic, I was very upset that Mattie did not share my love for this immediately. But we did not give up. Each summer thereafter, we kept bringing him back to the beach, and by the third summer, he loved it. Mattie began to see the building possibilities with sand and that could absorb him for hours!


Quote of the day: No greater grief than to remember days of gladness when sorrow is at hand. ~ Friedrich von Schiller

When I read this quote, I felt transported back to the last week of Mattie's life. We were at the hospital and fighting to make him comfortable, since his body was filling up with fluid and he was having a horrific time breathing. I recall those were days of gladness (because Mattie was still with us) but they were also clouded with a sense of sorrow, because we knew Mattie's death was imminent. I remember these days so well, and I concur they do produce and contribute to the grief Peter and I feel now.

February is turning out to be a very busy month for me. Perhaps focusing on different things right now will be good for me. The first and foremost thing on our mind is the Foundation's Walk on May 22, 2011. Peter and I are having our first planning meeting with our amazing volunteers in about two weeks. We have a core group of about 30 people who walk this journey with us each spring to plan this event. I am not sure where we would be without them?!

The other activity Peter and I are involved with this month is lobbying on Capitol Hill for pediatric cancer. Our Foundation is very grateful to Mercury, a high stakes public strategy firm, for working with us to develop an advocacy plan. I look forward to sharing more about this with you as it unfolds.

I mentioned this in the Fall, but I will be working with one of the kindergarten teachers at Mattie's school this semester to develop a three part series on Matisse and Picasso for the children. As many of my readers know, I have been an educator for many years, but of adults. Never of children, much less kindergarten aged children. I have been brainstorming several hands on activities for the children as they learn about the wonderful works and talents of two great artists. I appreciate Donna's invitation to come to her classroom, and her openness to share her students with me. One of the things you notice immediately in your life when your child dies, is that your opportunity to be around other children diminishes. When Mattie died, many aspects of my life died along with him, and in a way, I feel that Donna is trying to help me recapture this piece of myself. Needless to say, I went to the public library today and checked out several books on Matisse and Picasso, that I know will be helpful as I prepare for the sessions with the children.

It is funny how you can start out the day, and not really be prepared for how it will end up. This evening, as I drove back home and was parking in our complex's garage, I saw a neighbor of mine. I have known Kathleen for many years and she was very fond of Mattie. Kathleen is one of my older adult friends. When she learned that Mattie had cancer, she too was devastated. During our returns from the hospital, between treatments, she would always leave me something at my door, as a welcome home present. Many times she left me flowers because she knows how much I love gardening. She would leave me happy flowers like sunflowers or gerber daisies! She continues to reach out to me after Mattie died, but I wasn't in a reachable place for the most part, well maybe until today.

We started talking in the parking garage, and after I helped her inside the building, she asked me if I would like to visit with her in her home. Because Peter was working late tonight, I figured this was the perfect opportunity to connect. I spent several hours with her over tea and cookies. During that time, I learned all about her life. Her life story literally blew me away. It wasn't what I was expecting to hear, especially since she seems like such a happy, well-adjusted, and sensible lady. She has suffered many heartaches in her life, along with many losses. Her mother died when she was only 8 years old. When she learned of her mother's death, the nuns who were visiting her family basically told her "to make the most out of it!" I asked her what on earth that was supposed to mean? She said they were trying to tell her this was an opportunity for her to connect further with God. I get the message, but the delivery of this to an eight year old seems a little inappropriate. Because this is Kathleen's life, I am not going into details here on the blog, but suffice it to say, I can't remember the last time I listened so intently to a life story. I almost felt like I was a child again, listening to a story and was SO eager to hear all the details and the outcomes. I told Kathleen that her life story should be written down, and her response to me was no one would be interested in it. For some reason I got the feeling that no one ever told Kathleen that she was special, that she was a survivor in so many ways, and that despite her own pain, she carries on in a cheerful and spiritual manner. My visit with her made me pause tonight, because she wanted me to know that the hardship I am experiencing now is making me stronger than I know. She says this strength will be needed later on in life. I found that premonition actually daunting because when she said that I imagined that potentially I will experience something even worse than losing Mattie.   

After our tea, I gave Kathleen a hug, and thanked her for sharing part of her life with me. She showed me family pictures, and a picture of her and her brothers when they were children. It is a very special feeling holding someone's memories in your hands, and as I looked at a picture of her mother, she recalled the dress her mother was wearing in the picture so vividly to me. The picture was black and white, but her description was most definitely in color. As I was leaving Kathleen told me that every time she sees my car, she thinks of Mattie, and almost looks to see if he is in the backseat. But of course he isn't, nonetheless, she wanted me to know that this doesn't prevent her from saying hi and talking internally to him.

February 2, 2011

Wednesday, February 2, 2011

Wednesday, February 2, 2011

Tonight's picture was taken in July of 2003. I have posted other pictures from this time period the past two nights. I have come across a folder I haven't looked at in a while, so I am sharing some special moments with you from this folder. Though this picture may not seem that fascinating to you, to me it is a very special picture. It is special for two reasons. The first was because Mattie and I were walking hand in hand to see the lighthouse in Hatteras. Though Peter and I had been to the Outer Banks several times before Mattie was born, we were never able to walk up to the Hatteras Lighthouse because it was in the process of being moved to safer ground. Therefore, that was my first time venturing to see this structure. The second reason this picture is special was that you can see Mattie really trying to walk and doing a great job. He was studying his feet as he was walking. Mattie began walking independently at 16 months, so at 15 months here, he was basically almost there!  

Quote of the day: Each substance of a grief hath twenty shadows. ~ William Shakespeare


I am beginning to see that Shakespeare really had a very deep understanding for the emotions of grief. He realized the complexities and the various dimensions associated with surviving the death of a loved one. His description of "twenty shadows" interests me, because the definition of a shadow is..... an area where direct light from a light source cannot reach due to obstruction by an object. So in this case, grief is ONE very large object, that not only obstructs light to one area inside a person, but TWENTY! Grief does this by casting almost a cloud or shadow of darkness within a person, and the struggle for the griever is to try to break through this confusion. A confusion which leaves you in an unrecognizable state, without any sort of guide posts or maps.

For some time I have viewed my perspective on cancer as different from others. But it wasn't until I emailed my friend and colleague, Nancy, today, did I actually verbalize it. It is a feeling that I am trying to work through, but it is very real and yet not very nice to admit to. As I say all the time, on July 23, 2008, I became a part of a club. The cancer club. Not a club anyone voluntarily joins, but just like any other club, it has its own culture, its own preferences, its own language, and it is VERY costly. However, when you lose someone to cancer, you then become a member of an even more exclusive cancer club. Not everyone is given the opportunity to join this club, because the first step toward initiation is death. So though I am a part of the first club, the cancer club, I find that I greatly identify with cancer death club. Or death in general. Where is this going? Well I believe that depending upon which club you are a part of, this influences how you take in and absorb information presented about cancer.

I find that I have a VERY, VERY difficult time listening to positive messages, sunny day scenarios, and other hopeful messages as it relates to cancer. In fact, I find it very difficult to listen to survivors. Naturally, I am happy when people can conquer cancer, and I understand the battle that entails, but for me it is simply bittersweet to hear these messages. Mainly because I am always left feeling..... well why not Mattie?! Why wasn't he spared? Cognitively I realize as a human being, I do not want to see others suffer and especially battle cancer. I want cures, I want the day where the word cancer doesn't even exist. However, the other side of me, the raw side, the Mattie mom side, simply looks at this whole picture and says, I can't hear your success story, your positive message, because my son never had a chance, and he will never be able to live like you. This in a conflict I have within myself, and it always flares up around the time when I am planning a Foundation event. Simply because I know on one hand I want to explain the reality of the situation and on the other hand I have to approach this with a degree of sensitivity since everyone doesn't view this topic with my lens and broken heart. So the moral of the story is that cancer is a disease, that affects the patient and his/her family, but the long term emotional consequences and impact varies greatly for each of us touched by the disease.

I wanted to alert my readers to the fact that Friday, February 4, is World Cancer Day. I received the below message from the LiveStrong organization. They designed a five question cancer quiz, which you may find interesting. It doesn't take long to complete, and you may find some of the responses fascinating.


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I’ve had a long, personal battle with cancer, but I was still shocked when I first learned the facts of cancer’s enormous impact around the world.


You’ll feel the same way when you take our five question World Cancer Day Quiz. It’s a great way to get the startling facts about this global epidemic.

The truth is, we can’t win the fight against cancer unless we know what we’re facing. That’s why on World Cancer Day—Friday, February 4—LIVESTRONG and our partners all over the world are working to raise awareness and shine a spotlight on the global challenge of cancer.

Take the quiz and share this link to help raise awareness for World Cancer Day:
http://Quiz.LIVESTRONG.org

Please do your part and help us move even closer to a world without cancer.

Thanks for taking action,

Doug Ulman
President and CEO, LIVESTRONG
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February 1, 2011

Tuesday, February 1, 2011

Tuesday, February 1, 2011 -- Mattie died 73 weeks ago today.

Tonight's picture coincides with last night's picture. Both were taken in July of 2003, during Mattie's first trip to the Outer Banks of North Carolina. In last night's picture you observed Peter and Mattie climbing the spiral staircase to the top of Corolla Light. Whereas tonight's picture shows them after they reached the top. As you can see Mattie looked upset. He was upset, because despite the heat and the stillness below, at the top of the lighthouse it was very windy, and he wasn't happy about that at all. The ironic part was Peter was smiling in the picture, but I remember him being extremely overheated from climbing up all those stairs with Mattie on his back.

Quote of the day: Grief drives men into habits of serious reflection, sharpens the understanding, and softens the heart. ~ John Adams

This Tuesday marks the 73rd week that Mattie has been gone from our lives. Somehow Tuesdays may just never be the same for me. Throughout the day, I was touched to receive several Mattie memory emails.
For example, my friend, Tanja, sent me a message, and in her message she stated, "I think it is not a coincidence that he was called Mattie Moon and that he loved  the sun. Both of these natural elements are with us every day and everyone who got to know Mattie will always remember him when they see the sun and/or the moon." As Mattie's mom, I naturally feel this way when I see the sun and the moon, but it is a special feeling, knowing that I am NOT alone. That others too are thinking of my Mattie, when the sun shines brightly or when the moon sets the night sky aglow.

The other message that I received today was from a mom at Mattie's elementary school. Her daughter and Mattie were in the same kindergarten class together. This mom wanted me to know that her daughter thinks of Mattie often and remembers him as being "inclusive." In fact, the little girl stated that Mattie "never wanted another child to feel lonely or be by him or herself." She admired that trait in Mattie. I don't know about you, but hearing this feedback from Mattie's peer, actually made me stop and reflect. It made me pause because I agree with her, Mattie was definitely like that, but I am truly impressed by her ability to observe that, remember that, and to attach that special quality to Mattie. As parents we try to teach our children certain values, and to me being inclusive is important. Mattie and I had many teachable moments together on playgrounds over the years, and what today's email showed me, was all those moments of modeling appropriate behaviors paid off. Mattie integrated what he learned and incorporated it into his daily routine. It became a part of him. In any case, this memory from Mattie's classmate brought a smile to my face today, and a tear to Peter's!

On a lighter note, yet a meaningful one, I received an email today from my dad. He forwarded me Charles Schulz' philosophy on the important people in our lives. As you know, Mr. Schulz was the creator of the Peanuts comic strip. I think we all fall into the trap sometimes of striving for the medal, the certificate, the award, and recognition (which I am not implying is a bad thing per se), but at the end of the day, you do not need these things to be a good person, to do the right thing, to help someone in your life, and to make a difference. In fact, it is most likely the everyday things that you do, that are probably most memorable to those in your life.

========================================
The following is the philosophy of Charles Schulz, the creator of the 'Peanuts' comic strip.


You don't have to actually answer the questions. Just ponder on them.
Just read the e-mail straight through, and you'll get the point.

1. Name the five wealthiest people in the world.
2. Name the last five Heisman trophy winners.
3. Name the last five winners of the Miss America pageant.
4 Name ten people who have won the Nobel or Pulitzer Prize.
5. Name the last half dozen Academy Award winners for best actor and actress.
6. Name the last decade's worth of World Series winners.


The point is, none of us remembers the headliners of yesterday.
These are no second-rate achievers.
They are the best in their fields.
But the applause dies..
Awards tarnish.
Achievements are forgotten.
Accolades and certificates are buried with their owners.


Here's another quiz. See how you do on this one:

1. List a few teachers who aided your journey through school.
2. Name three friends who have helped you through a difficult time.
3. Name five people who have taught you something worthwhile.
4. Think of a few people who have made you feel appreciated and special!!
5. Think of five people you enjoy spending time with.

Easier?
The lesson: The people who make a difference in your life are not the ones with the most credentials..
the most money...or the most awards. They simply are the ones who care the most
=========================================

I would like to end tonight's posting with a message I received from my mom today. I had told her I came across a letter, this weekend while cleaning my desk, that she wrote to me when I was pregnant with Mattie. In essence these are her thoughts to my finding this letter. My Mom wrote, "You reminded me of the letter I wrote to you when you announced that you were pregnant. I wanted to be in Washington with you so much that 9/11 would not deter me and I convinced Daddy to take Amtrak. That in of itself was an experience traveling across the country on a train that had its share of mini-disasters that included a derailment, a suicide, a fire and a missed connection. But, I was determined to be as close to the new baby within you as I could the minute I found out. That impulse to be with Mattie never left me and accounted for my learning to be bi-coastal and loving it. I even flew shortly after 9/11 when the airports were empty and so were the planes. Most people had better sense than to tempt the fates. But where Mattie was concerned, my top priority was to be with him and I refused to let the terrorists get to me! When you reported that you were going through your desk and found the letter, it brought back fond memories of a beautiful time when Daddy and I were anxiously anticipating Mattie's arrival.The letter is a document that reveals how much I loved Mattie even before he was born and in retrospect, even though heartache ensued, it turned out to be a memorable everlasting love that I will cherish forever."

January 31, 2011

Monday, January 31, 2011

Monday, January 31, 2011

Tonight's picture was taken in July of 2003. Mattie was a year old, and that was his first trip to the Outer Banks of North Carolina. I have always been in love with lighthouses, and we took Mattie to Corolla Light that summer and naturally I wanted to climb to the top. Peter and Mattie went together, and I honestly do not know how I did not lose Peter that day from the heat. It was sweltering out, in the 90s with high humidity, and Mattie was too young to climb. So he rode in a carrier on Peter's back. As Peter still tells me, "THAT WAS ONE LONG CLIMB!" Needless to say we all made it to the top of the lighthouse, and Mattie loved the adventure and the climb.

Quote of the day: Given a choice between grief and nothing, I'd choose grief. ~ William Faulkner


Those closest to me have told me how impressed they are that I have made a start at trying to reorganize my home life. That may sound so simple to my readers, but it really isn't. My level of chaos began as soon as Mattie was diagnosed with cancer in July of 2008. At that point, mail began to pile up, toys coming from the hospital and being delivered to our home piled up, Mattie's clothes, medical supplies, and hundreds of his video tapes surrounded us. I guess what I should remind you is that I am not talking about one of two toys accumulated during a hospital visit, I am talking around 50 to 100 new items each time. Imagine 50 to 100 new items entering your home each week of your life for 15 months, and also imagine not having the time to address the accumulation because your priority was caring for a sick and dying child. You learn to live with clutter, you learn to overlook the chaos, because the sheer life and death situation before you is all encompassing, overwhelming, and requires every fiber of your being to manage. I try to remind myself, as I look at the chaos around me that there is an explanation for this, that this isn't me, but this is the result of a great life tragedy. This is a very real and tangible reaction to cancer! Cancer puts your life on hold and you basically stop living. Things are no longer important, all that is important are meeting the basic biological needs of your family, and all the other hierarchical needs (safety, love, belongingness, self-esteem, etc) are simply dispensable.

It is very hard to move from the world of cancer and death back to the living. Because living requires a different set of priorities, a different point of view, and  most of all it requires interacting with others. I have always been an extroverted person, however, with Mattie's illness and certainly his death, I have become more introverted, and I need much more alone time. Sometimes when interacting with others I see just how different my life is and how I no longer fit in. Those moments of realization are challenging for me, because it only highlights Mattie's loss in my life.

I had lunch with my friend Christine today. Some of you may recall that Christine is Campbell's mom, and Campbell was one of Mattie's close friends in kindergarten. It at times seems absolutely surreal that my life once involved driving back and forth to school, caring for a child, organizing playdates, and being a mom. Being a mom was an identity I had for seven years, and sometimes now when I am by myself, I find that my mind plays tricks on me, and I wonder if my mom life was real, or is my current life real?! The rational part of me knows that both are unfortunately real, but the emotional side of me is simply confused and horrified at the same time. Christine and I caught up on our lives, we chatted about the holidays, and naturally the Foundation Walk. It is ironic that both of us talked about how rare pediatric cancer seemed to us while we were growing up. In fact, I can't even think of one child I knew or heard about growing up who had cancer. Yet now, Christine and I know so many. It is hard to believe with our advances in medical science that we are still in the dark ages with pediatric cancer. If you disagree with that notion, then I suggest you watch chemotherapy being infused into a child and see its ramifications. If that doesn't do it for you, then add major surgeries to the mix, and I have a feeling you will concur immediately with me.

Today, I had the opportunity to read an article in the January 25th edition of The Wall Street Journal, entitled, "When a friend grieves, how to get sympathy right" by Elizabeth Bernstein. My dad sent me this article, and between the Journal and Time magazine article I reviewed, I see that grief is a topic we struggle with as a society. In particular, we are uncertain how to help and react to someone's loss. The article lists SIX tips to guide us as we assist a friend. They are:

1) Reach out
2) Listen
3) Share a memory
4) Offer practical help
5) Ask before bringing a lot of food
6) Give something that will live on

For the most part the article was helpful because the author interviewed people who were grieving and asked them what specifically helped them through the process. The four things that resonated with me were: 1) avoid cliches when talking to someone who lost a loved one (such as: good things come from bad; what doesn't kill you makes you stronger; he's at peace now), 2) do not claim to know how the grieving person feels, you do not. Don't suggest that the mourner "move on," 3) certain religious condolences can be upsetting (such as he/she is in a better place), and 4) "if you are reaching out or offering help, don't expect a response. Explain that you are checking in but understand that the mourner may not be able to get back to you and so you will call again. Promise to be there in the coming weeks and months. And keep your promise."

The article also touches upon how we sometimes talk about our own grief as we reach out to friends who are grieving. We do this to try to help and let the other person know that we understand to a certain extent what they are going through. However, as the article so astutely says, this method of sympathy can be construed as equating the losses and what this can do is actually prevent conversation. Though I think the six tips are helpful, there are two key components for me that I would add to this list. The first one is that of acceptance. Not the acceptance of the loss but the acceptance of the mourner as a changed person. I can't imagine anyone surviving a traumatic grief and not being altered in some way. Expecting your friend to be the SAME person, or return to the same person he/she was before the death, is not only upsetting to the mourner, but it can also seem disrespectful. As if the person he/she is grieving for was not an important part of one's life. The second component is be a friend. When I say be a friend, I mean more than just "reaching out." I have found several things helpful from my closest friends, and that is emails and text messages throughout the day, but beyond that, it is the level of inclusiveness in their lives. The feeling that my presence matters, that I am an integral part of their world, and that I am included in their activities, holidays, and gatherings. This has been crucial for me, because without it, it would be very easy to get completely sucked up in the loss of Mattie and completely disengage from the world. Friends prevent this from happening, and in many cases are a key protective factor in surviving such a devastating loss.

January 30, 2011

Sunday, January 30, 2011

Sunday, January 30, 2011

Tonight's picture was taken in March of 2003. Mattie was 11 months old, and that was his FIRST trip to Los Angeles. It was his first time flying ever, and he handled it very well. However, what you can't tell from this picture was the time of day. Mattie was very sensitive to the time change between the East and West coasts. I snapped this picture of Peter and Mattie at 4am. To Mattie it felt like 7am, and therefore it was time to wake up. I tried getting Mattie back to sleep that morning, but when Mattie was up, he was UP! So we began the first several days of our trip at 4am. Really NOT my hour, but with Mattie, I learned to do a lot of things I never thought I would do.


Quote of the day: While grief is fresh, every attempt to divert only irritates. You must wait till it be digested, and then amusement will dissipate the remains of it. ~ Samuel Johnson


Peter and I started the day talking about what we wanted to do today. I find that if I have NO plan on the weekends, this can be dangerous. So we chatted about going for a walk, having a late lunch out, and then tackling more cleaning. Today's cleaning adventure required muscle, so therefore, I had to have Peter's buy in into the process.

We returned to Roosevelt Island. Like yesterday, Peter walked the Island earlier in the morning, and then walked it with me in the early afternoon. During the winter months the Island is quiet, peaceful, and has very few visitors. Peter told me on his walk in the morning he saw a flock of robins. I had trouble believing this since it is winter and there is snow on the ground. I associate robins with the first sign of spring. However, to my amazement, as we were walking, I too got to see robins everywhere! In a way it was a beautiful reminder that spring will come, and all the wonderful trees and plants that are sleeping now, will return to life. Spring and particularly summer are my favorite times of year, and I am so happy Peter captured a picture of one of the robins today, because this bird signifies hope for a brighter tomorrow.
 
 
As we continued walking, in the distance I spotted something moving. A deer! As Peter tells me all the time, I have deerdar (or deer radar). That makes me laugh! But if there are deer around, I will spot them. This cutie turned its head to see us, and what I find absolutely amazing is how well camouflaged the deer are at this time of year. As the weather warms up, their fur coats seem to turn red in color. Today's temperature was in the 40s in Washington, DC and for some reason it just felt warmer. It was pleasant to be outside walking, and both of us enjoyed the peace, quiet, and openness of the Island. At times we just walked next to each other, quiet, and at other times we chatted. As we were leaving the Island we both reflected on how much Mattie loved visiting there with us, and all the things Mattie did on the Island. It was an amazing backyard to have where Mattie learned to climb rocks, feed ducks, play by the fountains, collect leaves, sticks, and rocks, skip stones on the water, and even sail his remote control boats. It is an Island rich with memories for us.   
 
When Peter and I got home, the fun began. I am still cleaning out things in our bedroom, but today, I had Peter take apart our bed, so I could remove everything I have stored there for years. I cleaned and vacuumed under there, and bagged things to donate, as well as things to simply throw away. I have no idea why I feel compelled to save certain things, but today I wasn't in the saving sort of mood, I was in the remove it from our home quickly mood. While cleaning, I also came across a rug Peter's grandmother gave us from her home many years ago. I had it rolled up under our bed. So what I decided to do was literally have Peter pick up our current rug, throw it out, and replace it with his grandmother's rug. So there are big changes in our room, and it is my hope that this will inspire me to have the courage to take on other parts of our home.
 
Tonight marks day SIX, and the final day, I will be discussing the article, Good News About Grief: As the nation mourns those killed in Tucson, a new look at the science of loss shows we're more resilient than we thought. This article was featured in Time magazine (January 24, 2011, pp. 42-46) and was written by Ruth Davis Konigsberg.


Just like I have done the previous five nights, I will share with you Konigsberg's writing, and then give my commentary below. Here is the fifth myth presented in Konigsberg's Time magazine article.

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Myth No. 5 Counseling Helps

Grief counseling is now routinely offered in a range of settings, beginning with the places where most people die: hospitals, palliative-care units and, most of all, hospices, where a minimum of one year of counseling after a loved one's death is mandated by federal legislation passed in 1982. If family members don't encounter someone offering to help in one of those places, they surely will at one of the nearly 20,000 funeral homes across the U.S., where the industry-approved term for bereavement support is "aftercare services." There are also freestanding organizations across the country that offer a wide array of treatments. Some of these organizations are not for profit, but others are all for it: The Grief Recovery Institute in Sherman Oaks, Calif., has trademarked the term grief recovery and charges $995 for a three day workshop.

For a practice that has become so ubiquitous, it has been awfully hard to verify its effectiveness, no matter how well intentioned its advocates may be. When Robert Neimeyer, a psychology professor at the University of Memphis, and his colleague Joseph M. Currier analyzed the results of more than 60 controlled studies on grief interventions in 2008, they found no evidence that counseling helped most bereaved individuals any more than the simple passage of time. "Instead of finding that people who received counseling got better or stayed the same and that people who didn't receive counseling got worse or stayed the same, we found that everyone just got better," Currier says.

The only instance in which counseling showed a benefit was when it was targeted at people displaying marked difficulties adapting to loss. "Given the current research, we can not say that grief counseling is as effective with adults who are showing a normative response," says Currier, referring to the statistical norm for grief's length and intensity.

That doesn't mean that no one is ever helped by counseling but rather that counseling doesn't, on average, seem to hasten grief's departure. In retrospect, the practice was likely popularized before there was enough solid research on normal grief to base it upon. And while counseling may have enriched a few of its practitioners, its propagation was driven more by ideology than money. Grief counselors are, by and large, not a sinister bunch out to make a buck off other people's misery, but they do, in the interest of self-preservation, have a stake in convincing us that grief is long and hard and requires their help.
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Konigsberg mentioned that counseling was mandated in 1982, by federal legislation, to be offered for a year to those who are grieving. However, contrary to her first paragraph of myth 5, I honestly do not recall Peter and I being offered counseling at the hospital and most certainly not through the funeral home where Mattie was cremated. However, as Peter reminds me, we were in shock back in September of 2009, so it is quite possible we are not remembering accurately. If I was to seek grief counseling, my most likely place to turn to for help would have been the hospital. However, Mattie's hospital for the most part doesn't have a bereavement program in place for its families. So I really can't say whether this type of support would have helped me. I do know that I attended one support group meeting at the hospital, a month after Mattie died. I was the one who asked for the creation of the support group, and the staff were nice enough to try to accommodate this request. But for various reasons the group never met again after that first session, and frankly after that initial experience, I felt very dissatisfied, angered, and with a clear understanding that a group environment was not right for me at that time.

Some of you may recall that pretty soon after Mattie died, I moved into Ann's house to help her with her dad, who was also dying. Once Ann's dad died, I spent many days after that point sitting with Mary (Ann's mom). Hospice grief counselors would come to visit Mary and offer her support, and at the same time, when they heard my story, they wanted to reach out and help me too. Frankly one social worker couldn't grasp how I could have just lost my son, and yet here I was functioning in an assisted living facility helping someone else grieve. Her insistence that I needed counseling infuriated me, because she wasn't taking the time to listen to my story and make an accurate assessment. I am sure to an outsider, it seemed impossible to grasp how I could go through another death on top of the one I already lived through. But here is the thing, for over 15 months prior to Ann's dad getting ill, I was caring intensely for Mattie. I was up around the clock seven days of week. My body was programmed to be alert, on all the time, thinking, caring, and working in a medical environment. When Mattie died, I couldn't just shut that switch off. It made sense from a physical standpoint that I should be the one to help Ann and from an emotional standpoint I am happy she allowed me in to do this. It brought us even closer as friends, and it gave me a purpose at a time when my world was crashing all around me. So what this social worker couldn't understand was that helping Ann's dad and mom, was actually therapeutic, it forced me to engage with the world, and in essence as Ann's dad was dying, Mary and I had many opportunities to chat. Which is in essence the beginning of our friendship together, a friendship that continues today.

So what is my point? My point is that we all handle grief differently and need different things to heal. Counseling may not be one of the things we all need on our journey through grief. I might feel quite differently if I did not have others in my life I could connect and talk with, but for the most part I felt early on, why would I be going to a counselor? This person can't possibly change my situation! This person can't bring Mattie back, and this person can't certainly erase the months of trauma I witnessed Mattie endure. Unlike other reasons for seeking therapy, with grief, I am not looking to learn a new strategy, I am not looking to change my mindset on how I am thinking or viewing the situation (because the situation is just bad, and no amount of reframing is going to make it look better to me), and I was most certainly unwilling to invest the time in rehashing what I lived through with someone who doesn't know me. That would be draining beyond proportion to me, because unless you witnessed what I lived through, I couldn't possibly describe it accurately to you. I remember one day I met with Mattie's social worker, Denise, at the hospital. I said to Denise that maybe I should meet with her periodically to just chat. Denise listened to me and was open to doing this, but then she asked me.... "why are you doing this? Because you want to or because others are telling you that you should?" Denise was correct, I was doing it because I was receiving pressure from others. Pressure and evaluations from others which weren't helpful. Denise normalized things for me and helped me understand that others in my life were frustrated and they wanted me to feel better, and they think that counseling will fix things. However, as Denise and I both knew, counseling was not going to fix the situation. I appreciated Denise's honestly, and what you should know is Denise's specialty is grief counseling. So she is a perfect example of person not pushing her profession upon me.

Grief is a very personal, private, and all encompassing issue. It changes your view of yourself, the world, and everyone in it. Part of the healing process is finding the will and hope to continue living. NO ONE can do that for you, not even the best of therapists. Which is why I feel that a good chunk of grief work, has to be done independently. I am certainly not closed off to professional help, but I am aware of the fact that in therapy change comes from within, and I do not want someone I do not know sitting with me hearing my feelings and thoughts on one of my most intimate relationships, raising Mattie.

At the end of myth 5, Konigsberg says.... "Grief counselors are, by and large, not a sinister bunch  - but they do, in the interest of self-preservation, have a stake in convincing us that grief is long and hard and requires their help." Reading this actually made me laugh. I am happy she doesn't consider mental health professionals (who wants to sit, listen, and help people at their lowest and most challenging points in their life) sinister! However, grief is long and hard, and most definitely I can see that there are times when professional help may be needed, but let's be honest. She is insinuating that grief counselors are convincing us as a society about the appropriate ways of grieving. I encourage you to step back, and think about this. Grief counselors are giving their opinions, sharing their insights from training and experience, and frankly how is this different than seeking the option of any other health specialist? Each specialist views a person from their own lens and training. You go to an eye doctor, because he/she understands eyes, and most likely this person will find an eye issue. You go to a cardiologist because he/she understands the working of the heart, and chances are this person will spot a heart issue. From my experience you go to these specialists to get their expert opinion, and most likely they will view your problem from their lens of knowledge. So why is it any different with a grief counselor? It isn't. In the end however, whether you are seeing a medical specialist or a mental health specialist, you as the PATIENT, must make the ultimate decision about your treatment. You are the one who is empowered, and you alone, know what is right for you. The same is true with grief. I can't think of a more imperative time in one's life where you must follow your own HEART and intuition about recovery than when you are surviving a profound loss.