Tonight's picture was taken in November of 2006. I am not sure whose eyes intrigue me more in this picture. When I look at Mattie's eyes, I see my own eyes. In many ways, Mattie physically looked like me but personality wise we were very similar. We understood each other and when we teamed up together, watch out! United we were a force. But tonight I also turn to Peter's blue eyes. One of the things that caught my attention with Peter in college was his eyes. I found his blue eyes to be a beautiful color, the color of the sky. When I see this picture, I see a dad with happy eyes. However, four years later, Mattie's death has impacted Peter's eyes and my eyes. Our eyes may be the same color, but they do not have the same spark they did before cancer devastated our lives. I have had complete strangers tell me recently that I have "sad" eyes. Perhaps, eyes don't lie, and seeing this picture of Peter tonight got me reflecting on our physical changes as a result of Osteosarcoma.
Quote of the day: I talked with mothers who had lost a child to cancer. Every single one said death gave their lives new meaning and purpose. And who do you think prepared them for the rough, lonely road they had to travel? Their dying child. They pointed their mothers toward the future and told them to keep going. The children had already accepted what their mothers were fighting to reject. ~ Erma Bombeck
As I read Erma Bombeck's quote, I felt mixed reactions toward it. I completely agree with her statement that "children had already accepted what their mothers were fighting to reject." Absolutely! Mattie understood he was dying, and even in his garbled speech toward the end, he told us in no uncertain terms that he was "dying." Not a word you expect a seven year old to use much less understand. But Mattie understood much more about the cancer that raged inside his body than all of us. When I say us, I really mean US. Not just Peter and I, I include his doctors in this mix. NO one thought Mattie's cancer was going to come back six weeks after his chemotherapy treatment ended. The only one who registered he was sick, and really sick, was Mattie. Mattie did not want to talk about his death, or what was happening to him, and sometimes I step back and wonder if Mattie decided this for his benefit or ours. Mattie knew and felt our love for him, and even in his death, he made his love for us very clear. He was not leaving this earth without our permission. In a way, by us agreeing to the administration of propofol, we helped him die peaceful. I assure you the five hours prior to the propofol administration was hell on earth for Mattie, for us, and for Sarah Marshall (his HEM/ONC nurse, aka our angel of mercy). As Mattie was dying, his room looked like a battlefield and our weapons of mass destruction were syringes FULL of narcotics. Hundreds of THEM!!! However, the effects of the syringes lasted only minutes, before Mattie was screaming in pain, and gasping for breath. Mattie's death will remain with me forever. I can see it, hear it, and feel it. Time doesn't heal that experience. It may help me put it into context, but it is a part of me.
The first part of Bombeck's quote is what I take issue with. She said that moms who lost their children to cancer, had new meaning and purpose in their lives. Certainly you can't go through a life and death experience without life's meaning being altered. This maybe different for each cancer survivor, but I have no doubt the person I was prior to cancer is no longer the person that stands before you now. My issue though is with her word, "purpose." I think it is much harder to come to terms with one's purpose after your child dies. After all, when you have a child, the thinking is that your most important purpose is to raise this being you created. In today's society, raising a child doesn't end at age 18. We live in a complex world and more is required of parents today, not only in terms of financial support but emotional and social support as well. Peter and I were united on this commitment, a commitment that had a future. With Mattie gone from our world, our purpose is much more gray. You could say that we are now back to what our lives looked like before Mattie was born. In essence, yes, but the one problem is we have seven years of parenting a child under our belt and in our minds and our hearts. So I guess I agree that Mattie's death has altered our purpose, but I freely admit to the fact that I have NO idea what that purpose is, I suppose it is evolving. Or perhaps I am hoping for divine intervention to help me have a vision of what a future looks like without Mattie. Not my current existence, I certainly know what that feels like, but a future. A future where I have some understanding of what the next day holds for me, a future where there is a purpose to getting up each day, and a future where sadness doesn't prevail over everything else.
Today was a rainy day in Washington, DC. I haven't been feeling well for the passed couple of days, therefore my walking routine isn't happening. However, I did meet Ann at the Mall. She is working on planning a birthday party for her oldest daughter, and I met her there to hear some of her ideas. While I was talking to Ann, she mentioned that a pair of pants she bought with me last week had shrunk after being cleaned and was upset about that but really did not have the time to focus on that problem. I registered the concern and we kept talking about the party and also about the book, Saving Henry, that I am reading.
When I began reading the book, I made the assumption that Henry had cancer, since he was treated at Georgetown University Hospital, like Mattie. However, Henry did not have cancer, he instead was born with a genetic disease that would require him to have a bone marrow transplant in order to survive. The disease is called Fanconi Anemia. Both of Henry's parents were carriers of this disease, and the only known way to cure this illness is to receive a bone marrow transplant from a PERFECT donor match. Such a match can only come from a sibling. Because both parents are carriers of this disease, the chances of them having another child with Fanconi Anemia was high, and also this child would need to have antigens that perfectly matched Henry's in order to be the perfect bone marrow donor. So this couple debated and struggled with how to save Henry. Until a medical procedure came to their attention, in which science could intervene and help this couple have a baby using in vitro fertilization paired with a procedure called PGD (Preimplantation genetic diagnosis). If the technique worked, then Henry's mom could be implanted with a viable embryo that was guaranteed not to have fanconi anemia and also guaranteed to have the exact antigens needed to make the sibling a perfect bone marrow donor for Henry. It is a complicated scenario with MANY ethical implications, and I am finding it fascinating to read Laurie's (Henry's mom) thinking process and naturally understanding her level of desperation to save her child's life. Though Laurie's story is different from my own, I can relate to her feelings about knowing your child is so ill that he could die. I also find that after going through Mattie's battle with cancer, I look at some of the controversial choices Laurie had to make quite differently. When it is your child you are aiming to save, it is amazing what moral principles you may think twice about if it provides a viable solution for your child.
After Ann and I had lunch together, we parted company, but I felt compelled to visit the store she bought her pants in last week. Having worked in a retail store myself in years past, I know that if you want to get something done quickly, you have to talk to the manager, who has the authority to make decisions. I explained Ann's story to the manager and I told him I am surprised that her pants shrunk and I expect his store to stand behind his merchandise. He agreed with me, and was willing to exchange the pants right there and then. The only problem was the pants were on Ann, and Ann was driving away. Just another episode in our Lucy and Ethel show! The manager was very kind and held the new pants for me, and I eventually met back up with Ann, got the pants, and got them exchanged. Some how I felt vindicated!
When I got home today, my friend Charlie sent me an uplifting story about a young woman who helped a family by giving them an unexpected gift. As I was reading the story, the story mentioned something called a "smile card." I honestly had NO idea what that was, and assumed the story took place in a different culture. Charlie then sent me the link below to an organization called helpothers.org, where the story she sent me was posted. Helpothers is an organization that encourages people to do random acts of kindness each day, and when you do these random acts, you can hand your recipient a smile card, in hopes that this will inspire him/her to perform a random act of kindness to someone else. In essence to keep the chain of kindness going. http://www.helpothers.org/index.php
The reason I bring up this website and the notion of acts of kindness is that I received many today. From Ann giving me chocolates and lunch to our friend Tamra, making and delivering us dinner. I expected none of these things today, and yet, as the recipient I felt very grateful and happy to be thought of in this way. It is certainly wonderful when you are not feeling well to have someone cook you dinner, and Tamra knows just how much I love stew, bread, salads, and of course OLIVES and CHOCOLATE. Unexpected acts of kindness, even among friends, are powerful gifts, and you never know just what a positive word, note, or gift can do for someone. I speak from over two years of experience with Team Mattie.
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