Thursday, March 29, 2012Tonight's picture was taken in May of 2005. Mattie was three years old and that weekend we took him to the DC Aquatic Gardens. Along the board walk, we stopped and took a picture. Mattie was a bundle of energy and what you may not realize was that I was practically holding Mattie in place on the bench in order for Peter to snap a picture of us!
Quote of the day: The mother's battle for her child with sickness, with poverty, with war, with all the forces of exploitation and callousness that cheapen human life needs to become a common human battle, waged in love and in the passion for survival. ~ Adrienne Rich
I literally was in three different states today..... DC, Maryland, and Virginia. Not an unusual commentary from a person living in my area, but it was definitely a lot of driving around for me. Mattie Miracle is having a fundraiser this Saturday, and as such, I had to pick up a credit card processing machine today in Virginia to handle on site donations. Then I had to jump back into the car and go to Maryland, where one of my doctors is located. That drive from Virginia to Maryland took me an hour alone!
I met with this doctor for an hour, and I have to say, I left more confused than when I went in. Bottom line, if I still need to be monitored monthly by scans, then why do an invasive procedure? A procedure which would require hospitalization, general anesthesia, and a whole list of potential risks. I am greatly simplifying the process, but in the end, it comes down to what will I really get out of this? The issue as he expressed it to me today, is I am like a snowflake. Meaning there are not many others like me floating about. I have a very unique and very rare issue. Which is why NO ONE really knows how to treat it! Lovely!
When I got out of this appointment I learned that Ann's mom, Mary, was having a hard day. Her caregiver got a hold of me and updated me about the problem, the day, and what I would be finding when I got to Mary's room. So I left Maryland, and drove back to Virginia. Another hour in the car!
I spent two and a half hours with Mary. Mary's roommate also enjoyed my company. I am not family to Mary, but somehow in her own way she relates to me and trusts what I have to say. Mary battles with dementia, and yet on some level I know she gets the fact that we both lost a son and I helped her through her husband's death. After Mary and I talked a while, I assessed what was bothering her. Mary is worried about one of her family members who is ill and living in a different state. I will spare you the details, but I have found with Mary that placating her and telling her everything will be okay without giving her details, is not effective. Which is fine by me, since I always believe honesty is an important policy and is the cornerstone of a friendship. So I found by telling her what was going on with her family member, explaining his upcoming procedure, and reassuring her as to why it had to be done, alleviated her stress and anxiety almost instantaneously. Mary, just like all of us, feels empowered when armed with information. Over the years with Mary, I have utilized this line on her which is.... "There is no need to worry. Believe me when it is time to worry, I will be the first one to let you know! But until then you have to believe what I am telling you is the truth." To bring closure to that topic, I then told Mary we have to take it one day at a time, and just appreciate the information we know today. We can't worry about what we don't know. The irony is Mary has been mainly mute all week, but her fear and concerns today, enabled her to verbalize for quite some time.
Mary then turned to me and literally told me she is enjoying the story I have been reading her this week. I suspected she was listening and absorbing it, but today confirmed my beliefs. So I took the book out and Mary and her roommate were listening to the story. Today we finished the short story entitled, The Christmas Box by Richard Paul Evans. I read that story in the 1990s, and I found it so touching that I brought it in to share with Mary. Why I chose it was because the main character's name is Mary and Mary shares something in common with both me and Mary. The character lost her child! By the time I got to the last chapter, the book had me in tears. I continued reading but the book wore me out emotionally. When I read it in the 90's the story was touching, but when I read it now in 2012 (after having lost a child), the book was like a dagger. I related to the character's story in great detail. I have attached a link to the book below, if it interests you!
http://www.richardpaulevans.com/books/the-christmas-box
Adrienne Rich's quote tonight, about a "common human battle" really caught my attention and truly speaks to the book I read to Mary. Because the main character in the book was so profoundly changed by the death of her daughter, that she made it her mission to open the eyes of another parent. A parent who was lucky enough to have a healthy child but lost sight of this greatest gift. He was focused on his business and in the process spent little to no time with his family and saw nurturing his daughter as a distraction from work. Mary, the character, illustrates that the death of a child is so profound and life altering, and yet regardless of time, the scars and memories are still there. Scars which can anger us, frustrate us, and cause us to take on this "common human battle." The battle for us is to get other parents to understand how lucky they are to have their life's greatest gift alive and healthy. For some of us, that gift was not guaranteed for our lifetime.
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