Tuesday, September 22, 2009
Tonight’s picture is another favorite of mine. You can see Mattie and I smiling at each other on the couch, but it is the sweet and loving way he was looking at me, that remains forever in my heart. I always look at these pictures and I am struck by just how much we looked alike.
Two weeks ago today, Mattie died. This vision of his death is still very vivid to me. In fact, I will never forget the fact that he did not want to let go and leave us. It took Propofol, a strong intravenous form of sedation, to help him slip away from us. The process of his death clearly illustrated to me his great love for us as well as our devotion to him. It continues to be hard to accept that we are living a life without our son and in turn all the aspects of life that come with raising a child.
This week, Peter and I are visiting with Ann and are staying in her house. Dr. Bob is out of town at a professional conference, and we decided to try to support Ann as she is balancing three children and the full time care of her parents. Peter and I are both committed to helping Ann and value her friendship, and in fact, removing ourselves from our home right now is actually very therapeutic. It is almost impossible to be surrounded by Mattie’s things and his ever presence in our home engulfs us. At times I am okay with this, and at other times, it becomes so overwhelming and brings about intense sadness. Mattie’s things remind Peter and I of what and WHO we are missing, how are lives have changed, and how lonely we are. Our family dynamics have changed, and our main purpose and focus in life have been striped away from us. So how do you recover from this? I don’t know!
When I woke up today, I glanced over at my desk, which is in our bedroom. On the desk sits a lovely 3-D elephant puzzle (therefore it stands up like a statue) that Mattie received as a gift from a colleague of Peter’s. I love this elephant puzzle because it features a mother elephant with her child. Mattie always loved playing with this puzzle and talking about it, because it reminded him of us. When I looked at the puzzle this morning, something was wrong. The mother elephant was missing a piece of herself, but the baby was intact. I guess I look at the world around me now and desperately search for signs and signals about how Mattie is doing, or how this loss is affecting me. I thought today’s picture in front of me was so accurate. Mattie may be at peace and found his wings perhaps, but like this mother elephant, I am not intact, a large piece of myself has been severed off. So this is how I started off my day.
I packed the things I needed to stay at Ann’s house this week, and then headed over to her parent’s assisted living facility. Ann has been having a very difficult time with Hospice, and I am truly amazed by the insensitivity, incompetence, and sheer lack of concern this particular Hospice group has for its patients and more importantly for the family members of these patients. Ann has made formal complaints, Dr. Bob (her husband, and Mattie’s surgeon) wrote a formal letter, and today, I called the executive vice president of clinical services. Needless to say, I continue to be thoroughly disgusted by the lack of response or timelines to address some major issues and oversights. I know that caring for someone who is ill and dying is HARD enough, but add on top of it the challenges of managing people responsible for the care, and it is a recipe for disaster.
While visiting with Mary and Sully (Ann’s parents), Margaret came by to visit. Margaret is a friend and also Mattie’s first preschool teacher from Resurrection Children’s Center. Margaret brought Mary a beautiful rose plant and some lovely pastries. We all had a good time chatting, and told stories about Mattie, and reflected on the kind of child he was, what he loved to do in the classroom, and what a solid and loyal friend he was. Mary talked about her son as well, and Sully was listening and very engaged to all three of us women chatting. He chimed in a couple of times to the conversation. But here is the thing, watching this dynamic today only proves to me the importance of human interaction. I saw Mary and Sully come to life as we were talking and making a human connection. I have no doubt we need all the drugs and technology of modern science, but we also can NEVER discount the vital nature of the human spirit and what influence that can have on one’s physical condition.
While Margaret was visiting, Tanja (a fellow SSSAS mom and friend) also stopped by. Thank you Tanja for the wonderful ice cream and my favorite tea. Tanja has been supporting me all year, and her support just continues even after Mattie’s death. So it was a day for me in which I was surrounded by caring people, who didn’t push me to express things I am not ready to feel or elicit yet. Thank you!
Two weeks ago today, Mattie died. This vision of his death is still very vivid to me. In fact, I will never forget the fact that he did not want to let go and leave us. It took Propofol, a strong intravenous form of sedation, to help him slip away from us. The process of his death clearly illustrated to me his great love for us as well as our devotion to him. It continues to be hard to accept that we are living a life without our son and in turn all the aspects of life that come with raising a child.
This week, Peter and I are visiting with Ann and are staying in her house. Dr. Bob is out of town at a professional conference, and we decided to try to support Ann as she is balancing three children and the full time care of her parents. Peter and I are both committed to helping Ann and value her friendship, and in fact, removing ourselves from our home right now is actually very therapeutic. It is almost impossible to be surrounded by Mattie’s things and his ever presence in our home engulfs us. At times I am okay with this, and at other times, it becomes so overwhelming and brings about intense sadness. Mattie’s things remind Peter and I of what and WHO we are missing, how are lives have changed, and how lonely we are. Our family dynamics have changed, and our main purpose and focus in life have been striped away from us. So how do you recover from this? I don’t know!
When I woke up today, I glanced over at my desk, which is in our bedroom. On the desk sits a lovely 3-D elephant puzzle (therefore it stands up like a statue) that Mattie received as a gift from a colleague of Peter’s. I love this elephant puzzle because it features a mother elephant with her child. Mattie always loved playing with this puzzle and talking about it, because it reminded him of us. When I looked at the puzzle this morning, something was wrong. The mother elephant was missing a piece of herself, but the baby was intact. I guess I look at the world around me now and desperately search for signs and signals about how Mattie is doing, or how this loss is affecting me. I thought today’s picture in front of me was so accurate. Mattie may be at peace and found his wings perhaps, but like this mother elephant, I am not intact, a large piece of myself has been severed off. So this is how I started off my day.
I packed the things I needed to stay at Ann’s house this week, and then headed over to her parent’s assisted living facility. Ann has been having a very difficult time with Hospice, and I am truly amazed by the insensitivity, incompetence, and sheer lack of concern this particular Hospice group has for its patients and more importantly for the family members of these patients. Ann has made formal complaints, Dr. Bob (her husband, and Mattie’s surgeon) wrote a formal letter, and today, I called the executive vice president of clinical services. Needless to say, I continue to be thoroughly disgusted by the lack of response or timelines to address some major issues and oversights. I know that caring for someone who is ill and dying is HARD enough, but add on top of it the challenges of managing people responsible for the care, and it is a recipe for disaster.
While visiting with Mary and Sully (Ann’s parents), Margaret came by to visit. Margaret is a friend and also Mattie’s first preschool teacher from Resurrection Children’s Center. Margaret brought Mary a beautiful rose plant and some lovely pastries. We all had a good time chatting, and told stories about Mattie, and reflected on the kind of child he was, what he loved to do in the classroom, and what a solid and loyal friend he was. Mary talked about her son as well, and Sully was listening and very engaged to all three of us women chatting. He chimed in a couple of times to the conversation. But here is the thing, watching this dynamic today only proves to me the importance of human interaction. I saw Mary and Sully come to life as we were talking and making a human connection. I have no doubt we need all the drugs and technology of modern science, but we also can NEVER discount the vital nature of the human spirit and what influence that can have on one’s physical condition.
While Margaret was visiting, Tanja (a fellow SSSAS mom and friend) also stopped by. Thank you Tanja for the wonderful ice cream and my favorite tea. Tanja has been supporting me all year, and her support just continues even after Mattie’s death. So it was a day for me in which I was surrounded by caring people, who didn’t push me to express things I am not ready to feel or elicit yet. Thank you!
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