Sunday, August 23, 2009

Sunday, August 23, 2009

Quote of the day: "Death ends a life, but not a relationship." ~ Morrie Schwartz, from Tuesdays with Morrie by Mitch Albom

Mattie has been having VERY restless nights of sleep. Not unlike the Fall of 2008, after his surgeries when he experienced sleep talking and night terrors (characterized by extreme terror and a temporary inability to regain full consciousness. The subject wakes abruptly from slow-wave sleep, with waking usually accompanied by gasping, moaning, or screaming. It is often impossible to awaken the person fully, and after the episode the subject normally settles back to sleep without waking. A night terror can rarely be recalled by the subject.). Mattie was screaming at 4am, however, he really wasn't conscious and did not respond to my questioning. None the less, hearing him scream, "go away, do not touch me," and then "tell her to leave the room" was rather frightening. The same episode happened at 6am, however, this time, I was able to arouse Mattie and question him more. This time he opened his eyes, and basically said to me he thought that he was in the hospital, and he was telling medical personnel to leave the room. Not that this explanation satisfied me, but it was certainly better than where my mind was going, in that I thought he was seeing an angel, who was preparing Mattie for his eventual journey. Peter and I are trying to come to terms with what is next for Mattie after his physical life on this earth, and based on the level and severity of Mattie illness and suffering, I guess I expect the heavens to just open up and at some point I am thinking I will see angels and saints sitting with me in Mattie's room telling us it is okay to let him go. No I haven't lost my mind, I realize that is most likely not going to happen, or at least I won't be able to see it with my mortal lens, but if my son is going to be taken away from me, then I am hoping heaven will be prepared to accept this special gift.

Mattie woke up and was not in a good mood today. It took him a while to pull out of it. But one thing different about today was Mattie did NOT need oxygen support. I have no idea why, but we will see what tomorrow holds. He is still weak, and vomiting a great deal. This is the third day in a row where he was unable to ride Speedy Red, and as Monday comes around I am determined to get him outside and in the fresh air. Something he refuses to do!

This afternoon, we had a lovely visit with Rev. Jim Greenfield. Peter and I were able to talk to Jim, while my parents played with Mattie inside the house. I am so happy that Jim agreed to work with us and officiate a funeral when the time is right. What I love about Jim is he is real, very human, and down to earth. He certainly is well qualified as a priest, but the reason he is a wonderful match for Peter and I is that he doesn't propose to have all the answers, and he is willing to explore topics with us. It is unthinkable in my mind, that Jim gave us pre-cana (which in essence is like a course or consultation Catholic couples must undergo before they can be married in a Catholic church) and baptized Mattie, and now just seven years later, we are talking about planning for Mattie's funeral. It is not only unfathomable but deeply troubling in my mind and heart. We discussed many things with Jim, and I started off the conversation with Jim about my doubts for God's love for us, and why I am having a very difficult time understanding his plan for Mattie and for us. Jim could have said our role is not to question God, but he did not say that, instead, he normalized my fears, doubts, and anger. Not only was that welcomed, but that put me at ease. Though knowing Jim as a person and the skills he comes to the table with, none of this is surprising. We talked about where to have the funeral, the Catholic church's view of cremation, and a host of other things. What I appreciated was that Jim helped us see this is a process, and we do not need to have all the answers on how we want to celebrate Mattie's life right away. That we should let some things unfold. This was very helpful and insightful, because I can feel we are dealing with the trauma of Mattie's death, and I for one am not thinking all that clearly to make such long term decisions.

We did discuss with Jim what we were hoping Mattie's funeral would look like, and I also told him of my great disappointment in our role as parents. Our role was to protect Mattie, and yet neither one of us was able to do this against the evil forces of Osteosarcoma. I shared with Jim the fact that I had this same conversation with Ann. I told him that Ann's response was, if I couldn't stop the disease and make Mattie better, than no one could. Jim liked that response as much as I did. But this gets back to what I was talking about last night, that there are forces in this world much bigger and more powerful than us, and accepting this is not only humbling, but at times scary. It also makes you see just how fragile life is, and as humans it is hard to live with this lack of control. I feel as if I see the world much clearer now than ever before, and what I see, I am not happy with. I long for the days of innocence and naivete. I see sadness, pain, and suffering all around me, and I have been an eye witness to terrible suffering endured by Mattie over this year. So I asked Jim how do you recover from this, how do you move on? Again, there is NO simple answer, and as Jim said, do I really want to move on and forget? We live in a world where we are supposed to just deal with things, and then package them up somewhere, forget them, and move on. Well clearly that will never happen with our love for Mattie, but yet how to reconcile that love, and still remain living after he is gone is hard to understand. Jim will remain connected with us through this journey, and I can't think of a better spiritual companion to have guide us.

Peter and I also discussed our struggle on how to prepare Mattie for this journey. Again there was no simple answer revealed, because there is NO right or wrong answer. But Peter and I were able to at least agree that helping Mattie come to terms with his death should be a staged like process. That telling him of his prognosis right now, would do more harm that good. So as he declines we will help him to understand what is happening with his body and try to discuss his fears along the way. I keep reflecting on what Jim said, which is don't expect to have all the answers now, the answers will evolve and happen, and in a way this helps take away some of the immense stress we are placing on ourselves to do the right thing.

After we said our good-byes to Jim, I left the house to visit Mary and Sully, Ann's parents. I couldn't spend as much time with them today as yesterday, but they were both happily surprised to see me. Tanja (a fellow SSSAS parent and a friend) brought Mary and Sully a lovely dinner, and I got to sit with them while they ate. As I sat with Mary, we always have a lot to talk about. We looked at pictures, talked about her family, and then of course talked about our boys (her son who died from cancer, and my Mattie). Before I left the assisted living facility tonight, Mary said to me that I missed my calling. That I should have been a nurse. I asked her why she felt this way. Her response was because she viewed me as a very compassionate person. I certainly do not do what I do for Mary and Sully, because I am looking for such positive feedback, but none the less, I was deeply moved by that compliment. I would be lost without Mattie's nurses this year, and have great respect for their work and skills. So this compliment brought a smile to my face, and the nurses at Georgetown should be proud, because if I am a good honorary nurse, it is because I had the best role models to follow.

When I arrived home, Peter and I ate dinner in stages. I ate first, and then sat with Mattie and watched a movie while Peter ate. This seems like the only way to bring peace into our lives at the moment, since food is such a sore subject for Mattie. We want to thank the Peterson family for a wonderful New England dinner. We thoroughly enjoyed it and Karen thank you for the lovely card with Caroline on the front, and for the tasty cherry pie. You always spoil us with a great pie!

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "As you struggle to come to grips with Mattie's impending departure, I hold you in my heart and wish you continuing strength. I am sure you can come up with an appropriate way to celebrate Mattie's life, with the help of Reverend Greenfield. In Judaism our "remembering" is done after the funeral, so that might be an option for you to consider. I am glad to see that Mattie has opened his "circle" to let your parents in, so they may have special time with him and you and Peter can get a much needed break. Bless you for going to visit Ann's parents while she is away. As always your visits were filled with thoughtful, kind actions I'm sure they treasure. I know they miss her a lot and likely feel very isolated without her daily visits. As always you and yours are in my thoughts and prayers daily."

The second message is from one of Mattie's outstanding HEM/ONC nurses at Georgetown. You may recall that Kathleen is the nurse who created a clay plaque for the Lombardi Clinic that reads, "I wish for a Mattie Miracle." In addition, Kathleen trained Peter and I about a week ago on how to administer all of Mattie's medicines through his central line. She did a great job, because these complex tasks are becoming a routine for us now. Kathleen wrote, "I am so glad that I was able to help you all last Sunday. I hope the info I typed up helped you figure out everything needed with administering the anti-emetics, antibiotics, TPN and Morphine for Mattie. With all you have learned this year, you definitely have earned an honorary nursing degree! Thank you so much for your e-mail this morning. I quickly checked my e-mail before heading into D.C. for my CPN (certified pediatric nurse) exam. Your simple words of thanks and praise gave me the boost I needed before my exam, easing my worries and nerves. I hope and wish that you know and realize just how much you have touched all of our lives, mine included. We should be giving you words of encouragement and praise, not the other way around! We should be the ones telling you thank you. So Vicki, now it's my turn. I just want to say thank you for being you! You are an amazing woman, one that has taught me more about love and relationships than I thought possible. You have shown me light of what I wish to have one day. A steady and rock solid relationship with the man she loves with all her heart- her best friend and confidant. A woman who is willing to do everything and anything for her child. The most amazing advocate. As well as a gentle, loving, nurturing mother who has taught her child what unconditional love is. You truly are amazing, and an inspiration. Mattie is so lucky to have you and Peter as parents. And although his story may end differently than we all hoped and prayed, I have peace of mind knowing that his life here on earth has been a happy one filled with love, support and encouragement. He will always be remembered, as will you and Peter. As always, you know that you, Peter, and my little monkey boy are in my thoughts and prayers."