Wednesday, October 5, 2011

Wednesday, October 5, 2011

Tonight's picture was taken in March of 2005. I LOVE this picture. If I could title it, the title would be.... A Boy and his Power Tools! Mattie got these kid version Home Depot tools as a gift, and absolutely loved them. He went around the house using them on practically everything! But what you should also know was Mattie had his own tool box, filled with real tools. Our neighbors got this tool box for Mattie because they could see how handy he was and that he loved assisting Peter. We still have Mattie's tools and toolbox, and many of Mattie's tools actually had his name on it. He made sure of it, so that his tools wouldn't get mixed up with his father's!

Quote of the day: I don't mind dying, I just don't want to be there when it happens. ~ Woody Allen

As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.

Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries


I had the opportunity to have lunch with my friend Alison today. As many of my faithful blog readers know, Alison was our Team Mattie fund coordinator and helped us in extraordinary ways while Mattie was battling cancer. Peter and I will never forget anyone who contributed to Mattie's fund while he was so ill, and we are grateful to the excellent way Alison managed this money. It is thanks to all these contributions and Alison's skills, that our Foundation was able to be started and is fiscally sound.

Alison and I discussed some Foundation activities and my goals. While talking to her she highlighted some issues that were bothering me and one of her comments I absolutely loved. She reminded me that I am only ONE person. Though some times I act like I am five people all wrapped up into one, but I have to be kinder or more realistic with myself. Some times hearing that is a good thing, and when she analyzed all that I do for the Foundation, I suppose I should be proud of what we have accomplished in less than TWO years. Reality checks are important as is positive feedback!

However, for me it was a bittersweet day. Two years ago today, Ann's father (Sully) died. You may be asking yourself what does this have to do with me or with Mattie. Well in many ways Sully's death connects me to Mattie's death. Mattie died on September 8 of 2009, and soon after Mattie's death, it was  evident that Ann's father's health was degrading significantly and he was dying. I have to admit after Mattie died I was absolutely LOST. I was emotionally numb, and yet I was SO used to caring for someone intensely for 24 hours a day, seven days a week, that this energy needed to go somewhere. I turned my adrenaline over to Sully. After all, Ann was managing her household and three children, and though she spent an inordinate amount of time, day and night, with her parents, she couldn't be there 24 hours a day. But I could! Some of you may recall that for several weeks, Peter and I moved into Ann's house after Mattie died. Peter spent the time with Ann helping at home, and I spent my time with Sully and Mary (Ann's mom). It was during this intense time, Mary and I became instant friends and bonded over the loss of our sons.

I am sure from an outsider's perspective at the time, it seemed hard to understand how I could just lose Mattie to cancer, and then turn around and sit vigil, nurse someone else, and help that person die. I can't explain it, but I do know that Sully gave me a purpose and a focus. In many ways, I will always be grateful that Ann allowed me into her family's life then, because I am honestly not sure what my days would have looked like without caring for Sully right after Mattie's death. I was very traumatized, so much so, that I could easily stay up for 24 hours straight with Sully, without needing sleep. My body was conditioned to functioning more like a machine than a person. But I also needed to be needed, and to be caring for someone. Intensely providing care made me feel alive and when I stopped moving, life seemed meaningless.

Though I did not see Ann today, I did stop by her house and planted a mum in her front yard. As I told her, the garden I have planted for her is really a memorial garden in many ways. I have plants in her flower beds that signify her brother's death, Mattie's death, and now her father's. Cancer and death have bonded Ann and I together. Most friendships start over perhaps commonalities, in school, or at work. Our connection is a bit different, and in a way it is a spiritual connection of sorts. As I say to her often, when Mattie died, he left a part of himself in her, and there are times she will be doing or saying something, and I just watch her, because it seems SO Mattie-like. It makes me pause.

I do not do this often, but I did go back to the blog, and read excerpts of my thoughts from when Sully died. I copied and pasted them below for you to read if this interests you. What fascinates me is that despite being traumatized and not sleeping, and having helped two people die in one month's time, my writing back then was clear, understandable, and captured powerful emotions.
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OCTOBER 5, 2009 (written before Ann's dad died)

Today however was not a good day for Ann’s dad. He is practically in a catatonic state, yet is sensitive to noise and all visitors on some level. In a way, he reminds me of where Mattie was toward the end of his struggle. I am all too familiar with the no talking, no noise policy. Within one month’s time, Ann, Peter, and I have seen more than enough death for a lifetime, yet as we sit during these final hours, it is hard not to relive and reflect upon Mattie’s short life and death. I think losing a child is by far one of the worst losses you can ask a person to go through, yet, I also know that saying good-bye to someone meaningful in your life is not easy regardless of the age. The only comfort I have in watching Sully die is knowing that he lived a full, productive, and happy life. Not that it makes losing him any easier, but somehow we as human beings like to rationalize that it is okay for an older person to die. That this follows the natural order of life. True I suppose, but I know whether a death is expected or it is sudden, there is still an overwhelming amount of sorrow, anger, sadness, and emptiness that results.

I certainly have experienced many relatives in my lifetime die, and I have gone to funerals. But until Mattie, I had never helped a person die, and to actually be with a person when one’s last breath was taken. This puts death in a whole new light and context. Death isn’t pretty, it is not like it is on TV, where this is a melodramatic last breath, and the pain and suffering is over within seconds. On the contrary, death can be quite the opposite and it also doesn’t follow a script or plan. You never know what each minute holds. I distinctly remember someone at Georgetown Hospital saying to me that death is natural, but watching death happen is anything but natural. This is actually a brilliant comment, which at the time meant nothing to me until I watched Mattie’s five-hour death march. Mattie’s death had sights and sounds to it that I will never forget. Ann said she heard her dad make this “death rattle” sound today, and so far I haven’t heard it, but believe me when I do, I will be able to identify it in seconds. So in essence Mattie has given me a medical education without ever having to go to medical school. His strength and courage live within me. Having helped Mattie live and battle with cancer has taught me a lot about life, priorities, and helping friends.

OCTOBER 6, 2009

Today marks Mattie's one month anniversary of his death. I can't believe that four weeks have passed by and yet, for Peter and I it seems like just yesterday. We live with a constant ache, a constant level of fatigue, and sadness. The emotions that we live with each day are overwhelming and at the same time indescribable.

Last night at 9pm, Ann's father died. Unlike Mattie, Sully died a peaceful death. It fact his heart rate just continued to become slower and slower, until it eventually just stopped beating. I still can't get over the huge difference between Sully's death and Mattie's. However, both were similar to the extent that there was no dialogue or two way good-byes. Not being able to have a two way conversation toward the end, I find unsettling, but I guess you just have to have faith that your loved one is hearing you as you express your final thoughts and feelings.

As I told Ann last night, being able to help her the past two weeks was a privilege. I feel very honored to be able to be with her through this intense process, and to be able to sit with her while her dad was dying. In a way, watching a loved one die is a private and intimate experience, and yet Ann allowed me to participate in it, and to support her. Not unlike how she supported me for over a year. It really intrigues me to find out just how many people have had the experience of watching the death process unfold with a loved one. My guess is not many people experience death in such an intense manner, but maybe I am wrong. Needless to say, I have seen two people die before my eyes in just less than a month. Certainly that is not easy for me, and yet, after helping Mattie, not much frazzles me. Not much scares me, and most certainly no medical personnel is going to intimidate me. Georgetown Hospital taught me well. I learned to question and advocate everything, and in the end I found Mattie's doctors respected me and I felt as if I was included as a valuable part of his team. However, sitting with Ann over the past two weeks has enabled us to learn more about each other, and as I always say, under times of crisis, you really learn what a person is made of. Experiencing such life and death situations, bonds you to a person instantly, like nothing else I have ever experienced. I am not saying I am looking for these near death experiences in my life, but Mattie and Sully's death are now a part of my life, and as such I have the need to make sense out of them. There has to be a reason I am going through this, I can't imagine why, but I am hoping that the reasoning presents itself. In the mean time, I just keep doing what I can to feel safe and somewhat able to cope.

As Ann heads to Boston tomorrow to plan her father's funeral, a part of me feels almost guilty or incomplete, because I will not be able to participate on this final journey with her. Naturally it makes perfect sense that I can not go to Boston right now, since Mattie's funeral is this Saturday, but I have become invested in the caring of Sully, and it seems like not attending the funeral doesn't put closure to our time together.

I had the opportunity to spend some time with Mary (Ann's mom) today. Mary, as is to be expected, is out of sorts today. As she let me know, she feels "empty." She looked at me as she was telling me this, and I told her I could completely understand how she feels. Mary is not crying, like myself, but you can tell she is profoundly sad. Sad for the loss of her husband and the loss of her son. Mary asked me today how I felt after Mattie died when I had to come back to our home. I thought that was an insightful question, especially as she sits in the room that her husband died in.