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