Saturday, July 16, 2011

Saturday, July 16, 2011

Tonight's picture was taken in June of 2007 in Lancaster, PA. We took Mattie to Dutchwonderland. A theme park really geared for younger aged children. Mattie had a great time that day and it was on this trip that he rode his FIRST roller coaster. Mattie LOVED roller coasters. The irony is Vicki has NEVER been on a roller coaster, not even a kiddie one. The notion of that kind of movement makes her sick. As you can see from this picture, Mattie met up with a park character and stopped to take a picture with this purple dinosaur. This is yet another way Mattie was different from his mother. Vicki was deathly afraid of these types of characters as a kid and most likely would have run the other way, hid, or simply panicked. The beauty of Mattie!

Quote of the day: One cannot be deeply responsive to the world without being saddened very often. ~ Erich Fromm

I decided to write tonight's blog and give Vicki a break. Being away from that which is most important to you, gives yourself the gift of being able to reflect on what makes each day important, and why that is the case.  The mind will wander, looking for an answer or a resolution, but in reality, connecting in a relationship, binding your thoughts and his/her thoughts into a single context, forever establishes a link between these two individuals, which over time can help them, help you, and all the others impacted by this.

When I travel, I sometimes feel it gives me the gift of clarity. It enables me to see what is truly important in this life. Although there may be fancy and extravagant things to do and give one another, I am simply reminded of the famous quote from Maya Angelou: "People will not remember what you did for them. However, they will forever remember how you made them feel."

So I returned from traveling for almost 24 hours, and I have to admit: the prospect of having to repack Sunday night and race right back to the airport that granted me my freedom today, only to board another plane, and still be separated from that which is essential to my life, is not something I would ever choose.

So in summary: I missed Vicki in an unfathomable manner, I have been through changes, and I will endure. But remember this: most people only have one chance at this.  Your child is growing so very fast and being a parent means validating your child's needs, and thereby unlocking the wonderful gift of ever-lasting learning and development.  There is no greater gift!

Friday, July 15, 2011

Friday,  July 15, 2011

Tonight's picture was taken in June of 2007, in Lancaster, PA. We took Mattie to Cherry-Crest Farm and I couldn't resist snapping this picture. Mattie was our ram that day and Peter our sheep! No one wanted to play the cow, my favorite farm animal! In retrospect I am so happy we took Mattie on all sorts of adventures and trips, because clearly it doesn't make sense to put something off to the future. Since I have learned the future is not guaranteed!


Quote of the day: Joy and sorrow are inseparable. . . together they come and when one sits alone with you . . . remember that the other is asleep upon your bed. ~ Kahlil Gibran

I had lunch with my friend Tanja and her daughter, Katharina today. They are leaving this weekend for their annual family visit to Germany. I am happy we got together today because Katharina has had some special summer adventures and it was nice to catch up with her and hear about them. She even showed me some of her pictures from camp as well as their recent trip to Alaska. Katharina thought about me while in Alaska and brought me back several gifts. Gifts she said Mattie would have approved of, which is most likely very true. I enjoyed our visit and appreciate this connection that Mattie helped to create for me.

When I arrived this afternoon in Mary's room I found a Happy Anniversary Balloon and card awaiting me. Earlier in the day Shayla, Mary's caregiver, text messaged me and wished me a happy anniversary. I wasn't sure how she knew it was my anniversary since I hadn't mentioned this to Shayla or Mary. However, when Shayla knew it was my 16th anniversary, I quickly deduced that Ann must have told her. Shayla confirmed with me the number of years I have been married, because she couldn't picture me married more than six years. She said I look too young to be married 16 years. I LOVE her already! The irony is 16 years goes by fast, and time has only slowed down for us now after Mattie's death. In many ways, without Mattie as our bench mark everyday seems like living in limbo. Children have a way of quantifying our time and existence. I thanked Mary for the lovely card and her sentiments. She said that 16 is a lucky number for her since she was married on May 16th. But she also said that she wanted to acknowledge this day because she feels it is important for me to know how much she appreciates me for the care that I give her. Naturally I do not expect Mary to say these things to me, since we are two moms who lost our sons to cancer, and that alone allows us to understand one another quite well. However, it is always nice to be appreciated verbally and told where you stand with someone.

As I write tonight, Peter is on a flight from Nigeria to Frankfurt. His flight from Frankfurt leaves at 3:45am (DC time) on Saturday, and he lands in Virginia at 1pm. So I imagine Peter is going to be out of it, and I will have to help him turn it around to leave again on Monday for Seattle. Though I haven't traveled, I am thoroughly exhausted this week. When Peter is away, our cat drives me crazy. She has awoken me every morning this week at 2am, 3am, 5am, 6am, and finally by 8am I have had it. I am not suggesting that she is just moving about our home during that time. NO! What I am saying is she is howling like a banshee and nothing calms her down, other than me getting up and feeding her or paying attention to her. I am living with a very strung out and anxious cat, and as I say to Peter it is no wonder her former owner shot her with a bb gun and threw her out on the streets of DC. We have had Patches for over 12 years and I have truly noticed that her behavior has gotten MUCH worse since Mattie's death. It is hard to say whether this behavior is a reaction to Mattie's death and the feelings she is absorbing from us, or whether her physical ailments provide an explanation. Either case, I need a night of sleep ASAP and I am thrilled to have Peter back over the weekend.

I would like to end tonight's posting with a letter my mom wrote to Peter and I for our anniversary. My mom wrote, "You have reached your sixteenth anniversary and have plenty of miles left to travel to reach our number on August 14, though time goes more quickly the older you get. You have accomplished miracles in your years of marriage and tragedy has only made you closer because you were a great team from the start, full of heart, courage and high ideals. July used to be a month of high points in my life because you were born in that month and later married in the same month. Unfortunately and sadly, when I received that infamous call on July 23, 2008, it changed my perspective forever and I can no longer have tea at Priscilla's because that was where I was when you called. In regard to how you and Peter handled the nightmare of recent events, I congratulate you both for having taken a tragedy and transformed it into a miraculous Foundation for the benefit of sick children. You have taken the high road setting an example for other married couples facing tough problems! Your marriage has made you stronger so that together you can search for a new definition of happiness, although granted it will be subtly changed forever. It is apparent to all who know you that your journey through hell with Mattie gave you the fortitude to rise again and jointly reach for the moon in the remembrance of your dear precious son. Happy Anniversary and many more!"

Thursday, July 14, 2011

Thursday, July 14, 2011

Tonight's picture was taken in June of 2007 in Lancaster, PA. We took Mattie to a pretzel factory, and in the factory we all learned how to roll out dough and form it into a pretzel. This was a comedy show in and of itself, because it was easier said than actually done. Mattie figured it out one, two, three, while the rest of us were twisting the dough in all sorts of ways. I love this picture because Mattie's expression was really saying..... what is the big deal, I just did it!

Quote of the day:  Every man has his secret sorrows which the world knows not; and often times we call a man cold when he is only sad. ~ Henry Wadsworth Longfellow

Longfellow's quote is very meaningful, because it is easy to misinterpret someone else's behaviors and actions. In fact, sadness is an emotion that is so powerful it can take over one's mood, one's thoughts, and how one relates to the world. Rather than observe, listen, and understand someone else's sorrows and sadness, it is just easier for us to label that person as cold. Since this will enable us to WALK away without investing the time to uncover the heart of the problem. A problem which we may feel ill equipped to handle.

This morning I met my friend Christine and we took a 4.5 mile walk together. The irony is we talked the whole way, that it did not feel as if we covered that much territory. However, when Mattie died, one of our preschool friends mailed to us pedometers. So I have my pedometer clipped to me whenever I walk. There is some sort of satisfaction or need to know the distance I cover. I think it is a psychological thing... I have to know I am moving and accomplishing something, which seems very symbolic of the internal struggles I face.

Christine and I talked a lot about the Foundation and I shared with her my thinking and some of my goals for this year. Christine and I used to talk and interact a lot with each other at Mattie's school. So now that Mattie is gone, we miss this time together. Though our boys no longer have play dates, we still appreciate our time connecting, and I realize our friendship went beyond our boys just being friends. Though I always felt this way, it is nice to know that this is a reality! Christine introduced me to a restaurant I haven't been to before, and over lunch we chatted about so many things. I am happy to say that we concluded that we will be taking an exercise class together. This isn't only good physically for us, but it will be a wonderful way to see each other weekly. 

Tomorrow is July 15. Which is my wedding anniversary. Peter will be in Nigeria and boarding a plane to come home. He arrives back home on Saturday and then Monday morning he gets on another plane for Seattle. Talk about time zone confusion. It will be a whirlwind between laundry and dry cleaning, to get him repacked to head for Seattle! Celebrating a wedding anniversary for a couple who lost a child is rather complex. Complex because it is only natural on anniversaries for a couple to reflect on their accomplishments together, and typically one of the greatest life accomplishments is that of a child. What happens when the child dies? What happens to the relationship? For seven years of our marriage we focused on raising Mattie and planned our future accordingly. Now Mattie is not part of that future, and we are being forced to redefine ourselves and our relationship. Not by choice. Marriage in and of itself requires compromise, understanding, communication, trust, and respect. These are just words, but actually implementing them can be challenging under the best of circumstances. Now add one of the worst circumstances, a death of a child, and suddenly compromise, understanding, communication, trust, and respect are NOT enough. Much more is required, but one's emotional bank account is simply empty from seeing your child die from cancer. So how does one restore one's emotional bank account and continue to build a solid marriage? I have no answers really, but I do know that another factor has become crucial to our marriage, and that is Peter and I have learned to instill hope into each other when the other is down or lost.

Wednesday, July 13, 2011

Wednesday, July 13, 2011

Tonight's picture was taken in June of 2007 in Lancaster, PA. We took Mattie to a restaurant called Plain & Fancy, because we wanted him to experience Amish food. Mattie and I both got a kick out of the traditional dessert called Shoo-Fly Pie. This naturally intrigued Mattie because he wanted to know if the main ingredient was flies!!! Fortunately this gooey mixture of molasses, brown sugar, and spices only attracts flies.

Quote of the day: It's only when we truly know and understand that we have a limited time on earth -- and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had. ~ Elisabeth Kubler-Ross

I find it absolutely fascinating that with the power of one's cell phone you can be connected instantly to people all over town and the world. Peter and I exchanged messages today and he is holding his own despite working incredibly long hours.

An amazingly scary storm hit the DC area this afternoon. I was out and not home. Since I learned to drive in California, I am very cautious about driving in torrential rains and forget about snow. So I actually waited out the storm in a restaurant for 30 minutes. I wasn't going out with the winds and lightning. While watching the rain, I wasn't alone electronically, I had Peter in Nigeria with me, Karen in New York City awaiting a report, Tina in Alexandria trying to figure out if I was in a safe place, and my 11 year old buddy, Katharina text messaging me. When I think about this, it is pretty amazing!

This evening Peter and I were invited to a Children's Cause for Cancer Advocacy (CCCA) event. CCCA is the leading national advocacy organization working to achieve access to less toxic and more effective pediatric cancer therapies; to expand resources for research and specialized care; and to address the unique needs and challenges of childhood cancer survivors and their families. CCCA leads efforts to ensure that these needs and perspectives of children with cancer are integrated into the highest deliberations on health care and cancer policy at the Federal level.

CCCA is very supportive of The Mattie Miracle Cancer Foundation and promotes our House Resolution on their website: http://www.childrenscause.org/

As I entered tonight's event, there was this very special tree filled with pictures of children battling cancer and those, like Mattie, who lost their battle. You can see Mattie's picture on the right side of the tree. This is one of my favorite hospital pictures of Mattie. He had just spent hours digging mock dinosaur bones out of clay and had assembled the dinosaur on the table (his hand is on top of it). It was a proud but tiring moment! To me this picture illustrates his beautiful eyes and his captivating nature.

At the event this evening, I met Marilyn. Marilyn's daughter was treated at Georgetown University Hospital, like Mattie. They weren't there at the same time. Marilyn's daughter (one of our FACES OF HOPE) was diagnosed when she was 11 and she is now 26 and is an art therapist working with children who have cancer. Marilyn was one of the first moms I met at Georgetown, since she runs a parent outreach program at the Hospital. I had met other parents of childhood cancer survivors during my tenure at Georgetown and unfortunately I was never in a good frame of mind to interact with them. To me they represented the unobtainable, I did not find their camaraderie helpful at all. No fault of their own, they were all sincere and delightful. But I understood the gravity of Mattie's condition from the beginning and hearing success stories only aggravated me.

Marilyn and I had a great conversation tonight and I look forward to working with her to enhance support services to families at the Hospital. In addition, while talking to Marilyn I learned more about the complexities of having a teenager battling cancer and especially the long term physical and EMOTIONAL effects that occur post treatment. I learned that many siblings of cancer patients are diagnosed with eating disorders. This is NOT at all surprising considering the fact that siblings feel powerless, NO control in their lives, and also are unable to get the attention and support from parents (who are focused upon the child with cancer) to help them learn to cope with stress and emotions. This is the perfect breeding ground for the development of an eating disorder. It also dawned on me that when a child or teen develops cancer, that developmental time period for them is lost. During each stage of development children/teens gain knowledge and life experiences. However, when struck with cancer patients are no longer learning and interacting with their peers, and therefore to some extent that growth opportunity is stunted.

I learned a lot in my interactions tonight and I find listening to cancer stories a very powerful and enlightening process. These stories further confirmed to me that my ideas for next year's Cancer Walk is right on target. Typically I do not work with Peter on a theme for the Walk until the fall, but this summer, an important idea for a theme has hit me.

When I came home from the event, I found that my front door key literally broke in the lock. I couldn't get inside and Patches was howling by the door. Fortunately since Peter and I have lived in our complex for 15 years, everyone knows us. I can't thank our front desk personnel enough for mobilizing forces to get the key out of my lock and locating another key to get me inside.

Tuesday, July 12, 2011

Tuesday, July 12, 2011 -- Mattie died 96 weeks ago today.

Tonight's picture was taken in June of 2007 in Lancaster, PA. We took Mattie to the hotel's restaurant for breakfast and the chef took a liking to him. Needless to say, Mattie left breakfast with his OWN chef hat. He thought that was pretty special and as you can see he was beaming!

Quote of the day: Even hundredfold grief is divisible by love.  ~ Jareb Teague

Peter and I started our day off by using skype to communicate. It was nice to have a live electronic chat and to find out how he was doing.

I spent part of the morning in Ann's garden. To my surprise I was surrounded by butterflies and goldfinches. To me these were special sightings despite the fact that it felt like it was over 100 degrees outside! 

I had the opportunity to have lunch and spend several hours today with Margaret. Mattie's first preschool teacher and my friend. Margaret and I met in 2005 and though she was Mattie's teacher, I took an instant liking to her. She understood Mattie and appreciated him. In fact, Margaret was the first person to tell me Mattie was artistic. That truly did not register with me at the time, until later on in his development. Six years later, Margaret and I are still friends, a friendship created by my Mattie. When I reflect on tonight's quote, I have to say I agree with its sentiments. Grief and the loss of a child are unbearable, but experiencing the love and understanding of a friend does help in indescribable ways. We all look for acceptance, support, and to be understood. Granted understanding my level of feelings and pain isn't always an easy task, but Margaret was keeping up with me today and helped to normalize many of my concerns and feelings of sadness. In many ways, someone's time, listening ear, and desire to connect with me are probably the best gifts I can receive. 

This evening, I spent several hours with Mary, Ann's mom. Mary is now visited nightly by a fellow resident, Catherine. I am very fond of Catherine and I am so happy that Mary has a floormate that checks in on her and cares about her. In addition, one of Catherine's friends came back from the hospital last night and Catherine is thrilled to have her friend back. I saw her friend in the hallway today and made a big fuss over seeing her and welcomed her back. I told her that we all missed her and we were happy she returned to the assisted living facility. My comment made his lady beam with happiness. Which brings me back to my original point in tonight's blog. We all have the desire to be accepted and really considered important in someone else's eyes. In so many ways, Mattie was the person who viewed me as IMPORTANT and necessary, and now that this connection has been severed it seems to compound the loss.

I end tonight's posting with a message from Mattie's oncologist and our friend. Kristen wrote, "Thinking of you this Tuesday and everyday."

Monday, July 11, 2011

Monday, July 11, 2011

Tonight's picture was taken in June of 2007 in Lancaster, PA. We took Mattie to a local train museum, and while returning to the hotel from the day's adventure we saw this rainbow colored structure lying on a field. So we parked the car and went to explore it and to figure out what it was. It turned out to be a trampoline, but one like I had never seen before. Mattie took to it instantly and he and Peter were jumping up and down for several minutes. To this day, I can vividly see this field with nothing much around it other than this trampoline and it was just happenstance that we came across it in our travels.

Quote of the day: The risk of love is loss, and the price of loss is grief. ~ Hilary Stanton Zunin

Peter had his first full day of work in Nigeria. He is tired, but holding his own. Though we are unable to talk, we do communicate throughout the day by email. Nigeria is six hours ahead of Washington, DC, yet we find a way to connect.

My friend Tanja, and her daughter Katharina, are visiting Alaska this week. They have made my week by writing to me while away. Each day I get an update about what they have seen and done. They are preparing me for my trip to Alaska that Peter and I are taking with my parents in August. I just can't get over the wonderful sights of nature they have seen in just seven days. However, what captures my mind and heart is on each daily adventure, Tanja and Katharina are reminded of Mattie. They feel a strong connection to him in Alaska, whether it be through the glorious sun or the whales, eagles, moose or seals they have seen. It sounds like Mattie would have absolutely loved Alaska and its natural beauty, peacefulness, and animals. Tanja sent me this picture tonight, with the sun beaming through the clouds. A miraculous sight that makes us reflect on Mattie. In many ways Tanja is open to signs from Mattie as am I. Tonight after dinner, as they were walking out of the restaurant, ABBA's Dancing Queen could be heard. As many of my readers know, Dancing Queen was one of Mattie's favorite songs to hear while doing physical therapy at the hospital. Many of us in fact can't listen to this song now without thinking of Mattie. It is ironic that this song should play for them on their last night of vacation. Tanja reminds me often that my son was remarkable and has no problem talking about him and helping me to keep his memory alive. I am honored that while she is away, she is thinking of Mattie, thinking of me and how I am feeling, and takes this time to connect with me. These connections do matter and they do make a big difference in my day.

I went to visit Mary, Ann's mom today. While Ann and her family are on vacation, I try to visit Mary each day to provide her company and support. While visiting I bumped into Catherine. She is the resident I met last week when I stopped by to see Mary (Catherine was having lunch in the dining room with Mary, they were sitting right next to each other). Catherine loves the fact that I am originally from New York and she says she loves my accent because it reminds her of HOME. No one has ever told me they LOVE my accent! Catherine came into Mary's room this evening and we all talked together for a while. Several of Catherine's friends who also live in the facility were hospitalized this week. So she is feeling very lonely. I invited her into Mary's room to chat. In addition, she wanted to talk to her friends who were in the hospital to find out how they were doing, but she did not have the hospital phone number. So I googled that for her and wrote it down, so she can connect with her friends. When living in an institution, connecting with friends is vital. So I sensed that she felt a bit lost tonight without this companionship. Catherine and I have only met each other once before, but we have taken an instant liking to one another. Hearing conversation is very good for Mary, and I am happy we had this gathering in her room.

I would like to end tonight's posting with a story my mom wrote about the most recent Mattie Miracle Cancer Foundation Walk. I appreciate her capturing these observations and details and writing them down for me.

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Lasting Impressions II by Virginia R. Sardi

The star attractions of the 2011 Walkathon were Noah and Lauren, the bright, beautiful faces of hope that came to symbolize the event this year. These children fought osteosarcoma, survived it and volunteered to tell their stories to the people who assembled at the Walkathon. They spoke about the challenges they faced in coping with the disease, the effects of treatment and the return to “a new normalcy” when it was all over. They connected with their audience right away and were treated as modern day heroes in detailing their own experiences fighting the disease with poignancy from the. heart. To their credit, throughout the day they both showed “true grit” in their ability to enjoy the glorious event and were happy to be accepted “just like any other kid” in support of a cure for childhood cancer. From my perspective, I sensed a high degree of maturity in these children who at an early age appreciated what it meant to be alive and in good health but who had no illusions, recognizing that children do get very sick and some die. They were forced by circumstances to grow up fast, become realists and behave with honesty and openness about the fragility of life showing a tenacious resilience to remain positive in the face of grim news often lacking in adults confronted with similar health issues. What an awesome pair they are! Their parents are to be congratulated for helping them navigate through the cancer battle with so few psychological scars. Although Noah had a leg amputated and wore a prosthetic, he could be seen on the track taking an active part in the Walkathon just like everyone else. We learned that Lauren is a budding entrepreneur and has used her creativity to make bows out of duct tape that are simply beautiful. She sells her bows to raise money for the MMCF in memory of her buddy, Mattie.  At the event, the bows were sold out long before the event was over! I have one that I will always treasure because it was given to me by Austin, the nineteen year old son of Christine, Vicki and Peter’s good friend, who “adopted” me as one of his grandmothers. That was a big surprise! I said he could call me Grammie, as did Mattie. Then, Austin explained that he felt like he was Mattie’s older brother so calling me Grammie was only natural. Austin related a little bit of a conversation he had with Mattie at Mattie’s seventh and last birthday party at Christine’s house.  While they were chatting, Mattie spoke about what the future might hold for him and confided his uncertainty to Austin. Austin told me he responded by saying, “Mattie, you will always live in my heart,” and when Mattie heard that, he gave Austin one of his big beautiful smiles and went on to enjoy the rest of the day.  Knowing Austin as I now do, after our conversations at the Walkathon, he definitely has the sensitivity to befriend a sick little boy and make him feel better about himself and alleviate his fears. It was a marvelous revelation and further evidence that Mattie touched the hearts of all he came in contact with in his short life with each one of us having a unique and memorable story to tell!

At the Walkathons, I have made many friendships that link back to Mattie, propelling his memory into a living and vibrant force. This year I met the recently born grandchildren of both Doris, the mother of Theresa, one of Vicki’s graduate students at GWU and Margaret, Mattie’s first preschool teacher. Both were infants in their carriages, and definitely the youngest participants at the Walkathon. It gave me pleasure to see them at the event for they represent a future generation of potential advocates for Mattie’s cause. It is a tribute to Vicki and Peter that their devotion to the proposition that a brighter future for children with cancer is attainable through their fund raising efforts of MMCF and their advocacy for new legislation to address the delinquencies in funding over the past two decades. It is their belief that telling Mattie’s story will engender strong passions which will raise consciousness in the public mind, erasing the pattern of invisibility prevalent in the past and like Mattie’s oak tree at SSSAS will take root in fertile soil, flourish  and become a mighty force for good!

Sunday, July 10, 2011

Sunday, July 10, 2011

Tonight's picture was taken in June of 2007 in Lancaster, PA. Mattie posed in front of an Amish wagon. That whole trip was an adventure for us. Mattie loved seeing the working farms and riding on a horse drawn wagon. It was on that trip that Mattie and I fell in love with apple butter. We just couldn't eat enough of it, so much so that we brought several jars home with us.

Quote of the day: In struggling against anguish one never produces serenity; the struggle against anguish only produces new forms of anguish. ~ Simone Weil

Peter has arrived safely in Nigeria after 19 hours of travel! I am so happy he is there safely and is settling in.

I had the wonderful opportunity to spend the day with my friend, Junko. Junko just returned from overseas business travel so we had a lot to catch up on. We had tea and dessert together, then visited Ann's mom, and then I introduced Junko to Mattie's favorite restaurant for dinner. Though we spent hours together, we both came home more energized. I think connecting, talking, and emotionally understanding with each other are simply therapeutic factors between friends.

Junko and I talked about so many subject matters. She recently traveled to South Africa, and I found her insights and observations of that Country fascinating. She told me about her visit to Robben Island, off the coast of Cape Town. Since the Dutch settled at the Cape in the mid-1600s, Robben Island has been used primarily as a prison. Since the end of the 17th century, Robben Island has been used to isolate certain people, mainly political prisoners. Indigenous African leaders, Muslim leaders from the East Indies, Dutch and British soldiers and civilians, women, and anti-apartheid activists, including South Africa's first democratic President, Nelson Mandela, were all imprisoned on the Island.

The Robben Island prison was turned into a museum, NOT unlike Alcatraz in San Francisco. The tour guides, like on Alcatraz, are former prisoners. People who know first hand the living conditions and the torment experienced. However, for the prisoners on Robben Island the injustices of Apartheid (the social and political policy of racial segregation and discrimination enforced by white minority governments in South Africa from 1948 to 1994) were real, painful, and most likely haunt them even today. What struck both Junko and I is the courage of these prisoners to want to return and work on the Island each day and to tell their story. She actually said while on the Island she couldn't help but think of me, Peter, and Mattie.

Actually as we reflected on the similarities, we both were in tears. Peter and I were not on Robben Island, but living in a hospital caring for your child with cancer is equivalent in many ways to being a prisoner with a total lack of control in one's life. Junko said what amazed her is that these prisoners could return to the Island and felt compelled to tell their story, to set history straight, and to make a difference. Similarly she said she doesn't know how Peter and I get the courage to return to the hospital, where Mattie was treated and died. Yet we do because we are determined to tell Mattie's story, to make a difference, and to help children and families one Mattie Miracle at a time. I found Junko's analogy powerful, but I also found her understanding for the true depths of our internal conflicts and feelings very helpful. Feeling understood and not alone in these feelings are key for me. Because sometimes I can feel so different that I perceive no one else can possibly understand my internal dialogue and life.

When I got home this evening, I received this meaningful picture from our friend John. John worked with Peter at Arthur Andersen and he and his wife are major supporters of the Mattie Miracle Cancer Foundation. We are very proud of John's achievement and his remembrance of Mattie. John wrote, "Both of you and Mattie were on my mind this weekend. We just finished the 107 mile LiveStrong Challenge Davis this afternoon. Tough! Two 400 foot and two 900 foot climbs!"

I would like to end tonight's posting with a message from a fellow Osteosarcoma mom, Karen. Karen lost her son, Keaton, to this horrible disease in April of 2010, seven months after Mattie's death. Karen and I share similar feelings about our losses and I feel fortunate to have this email connection with her. Karen relates to my thoughts and feelings and allows me to see that the issue doesn't lie with us, but with the horrific circumstances that we are expected to live with. Karen wrote, "Oh, Vicki, How could you keep from having these feelings? I can definitely see how difficult it would be to try to process and interact with those who still inhabit that very different world that you used to share with them, that world that you can only long for, now....so conflicting. I am going to meet with some of Keaton's friends for lunch today. They were in an honors camp involved with their school, on his actual birthday, which was Friday, but they all contacted me, and want to get together, and eat his favorite...sushi, and toast him with his quail eggs, like they did for his b-day last year, a few months after he left this earth. I do love that they still remember and want to honor him...to keep his memory alive. But at the same time, just watching all of them happy and healthy, all their normal lives and activities going on all around me, can make me want to scream...to just run away and hide from the reality that he is not there with them, that he will never be a part of what he so desperately wanted and loved.And I, also, struggle to not be consumed by the anger at the unfairness of it all...the urge to just crush those dang quail eggs, and sweep the dishes off the table! At the same time, I long to hear every word from the boys, to know every detail about what is going on in their lives, every event that Keaton has missed, every plan that he will never be able to make....such conflicting emotions. Well, I can already feel a headache coming on this morning....can't imagine why, with such a war going on in my head:) So, find my Excedrin, paste on my smile, try to focus on catching up with these boys(who I do love) lives....pretend my Keaton is with us....right in the middle of all the fun. My mom always used to call me the "Queen of make-believe". Guess I'll try to live up to that title. Keeping you in my thoughts." Karen, Mother of Keaton for Always www.caringbridge.org/visit/keatonlee