Tuesday, November 3, 2009

Tuesday, November 3, 2009 --- Mattie died 8 weeks ago today.

Tonight's picture features Mattie on November 12, 2008, when he had his second major limb salvaging surgery. During this surgery, Mattie had prostheses placed in his right leg, left arm, and had a bone graft in his left wrist. It was massive and complex surgery, which took about 10 hours to complete (of which I will always be grateful to Dr. Bob, because his surgeries gave Mattie an additional year of life). However, days after this ordeal, Mattie was in bed smiling and attempting to lift his leg. It was an amazing sight to see, and despite being in pain, he was a trooper. Mattie was and will always be my hero. He exemplified courage and strength, almost in a super human kind of way!





Poem of the day: We Only Wanted You


If we could have a lifetime wish
A dream that would come true,
We'd pray to God with all our hearts
For yesterday and You.
A thousand words can't bring you back
We know because we've tried...
Neither will a thousand tears
We know because we've cried...
You left behind our broken hearts
And happy memories too...
But we never wanted memories
We only wanted You.




Mattie died eight weeks ago today. I am not sure how two months have passed before our eyes so quickly, and yet to me, it still seems like yesterday that we were fighting the battle of all battles. The days leading up to Mattie's death were traumatic, but watching and experiencing his death, which lasted a torturous five hours and it felt like an eternity, remains within me until this day. I can still picture the syringes of pain medication lining his bed, there just wasn't enough medication available to take his pain away. Mattie's death, his pain, the "death rattle" sound coming from his lungs were all harrowing experiences, so much so that even his nurses were crying. Crying was the only thing one could do because we felt absolutely and utterly helpless. The day of Mattie's death I cried so intensely, I almost felt as if I were screaming and crying at the same time. I remember holding Mattie as each of his vital signs flat lined, and then continued to hold him over an hour after he died. As I sit tonight and reflect on his death, it is no wonder I can't move on, I can't enjoy life, and I can't see things the same way again. I have seen and confronted death, but not any ordinary death, or in an ordinary or natural way. I saw death take over my son's body in a hostile, aggressive, and inhumane manner. These are the visions I am left to deal with, process, and understand.

I do want our blog readers to know that every Tuesday (in honor of Mattie's death), Mattie's oncologist, Dr. Kristen Snyder writes an e-mail to Peter and I. What a doctor, what a person! I truly believe that to some extent Mattie has forever changed her life as well. I also received many lovely e-mails today from our amazing Georgetown University Hospital support system. It was nice to hear from them, and I suppose until I wrote it last night on the blog, they weren't aware of how much we missed them. I am sure some families may want to block all aspects of the hospital out of their minds. I can certainly appreciate that completely, but for Peter and I, Georgetown was more than a Hospital. It was our second home, where we felt we were united with staff to achieve a common goal, The Mattie Miracle.

We may not have been able to achieve the one true Mattie Miracle, as we had hoped, but I am so pleased to announce that The Mattie Miracle Cancer Foundation did become an official corporation in the State of Virginia on November 2, 2009. I can not thank my Peter and Peter Keefe enough for the tireless efforts they are putting into this Foundation to get it up and operational. I spoke to my Peter last night and I told him I am so proud of the work he is doing to help get this Foundation established, but I also wanted to explain to him my lack of energy toward the creation of the Foundation. In true Peter fashion, I really did not need to explain anything to him. He knows where my heart lies, but also understands that I am fatigued, depressed, and trying to recover from over a year of intense stress which of course only led up to the death of Mattie. Not that my lack of action needed explanation, but I felt better talking about it with Peter.

I spent part of my day today with Ann. We went shopping together and had lunch and chatted. One thing was evident though, and I guess it is quite transparent to Peter and Ann, and that is I am refusing to allow myself to be happy. On some level I feel guilty to experience even brief moments of happiness. Both Peter and Ann have spoken to me about this and it is something that I have made a mental note of, yet, how do you find happiness when everything about your world makes no sense? This may sound strange to you, but I offer you the opportunity to pause, and if you are parent try to imagine that tomorrow you wake up and you no longer have your children around. Not that they never existed, they existed alright, but they were taken from you after a most torturous battle that you lost right before your eyes. I ask you what do your days look like now? Does life as you know it make sense? Chances are if you are really able to visualize what I am proposing, you too would be lost, questioning life, and wondering what the future holds for you.

Later this afternoon, I went with Ann and her children to visit Mary (Ann's mother). While visiting Mary, she choked on a muffin. It was a frightening couple of minutes in which Mary did turn blue and she was very shaken up from the inability to breathe. Part of Mary's disease progression is affecting her ability to swallow. One of Mary's greatest remaining pleasures in life is eating, and if she must land up having a pureed diet, this will greatly impact her quality of life. It was actually very disheartening to see this realization today, and to see Mary so frightened, and questioning whether it would have been better for her to die today when this incident happened. Mary has experienced so many major losses, and as I sat with her, I couldn't help but deeply understand what she was telling me.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "If some people are pushing you toward doing things or seem to be asking you when you will be ready to "reengage" with the world, it is not because they don't care about your loss, I believe it is because they do and they cannot fix it. Mattie is gone from here, nothing will change that and so they want your pain to lessen. Unfortunately, (but fortunately for them) they have not been through a year like yours and cannot really conceive of what that does to the essence of who you are. There is a loss of role as well; you are parents without a child to parent. Now instead of a triangle, your family structure is a line linking you and Peter. Getting from one to the other takes negotiation, time and effort to find a balance, just as it took those things to find a balance when you were first married and then when Mattie joined you. Now you have to go back to the original structure but it is not the same as the memories pull you into the pattern you had for seven years. Your love and need for Mattie will always be with you, and hopefullythose who support you will understand your need to keep him a part of your life as Ann does. Your description of Ann as a bridge is so perfect; she has been that for you all through this between the volunteers and you, the hospital and you, and now between the life with cancer and the life after. I am grateful for her place in your life."