Tonight's picture was taken in November of 2003. Mattie was a year and a half old and was my interior designer. He wasn't happy with where I placed the pumpkins that year, and decided to take matters into his own hands. Mattie loved pumpkins and was attracted to their bright and happy color! There are many pictures over the years that I took that really captured Mattie's will, determination, and spirit. When Mattie had his mind made up to do something, it was like watching a boy on a mission. Not unlike what you are seeing illustrated here!
Quote of the day: When a person is born we rejoice, and when they’re married we jubilate, but when they die we try to pretend nothing has happened. ~ Margaret Mead
Margaret Mead was absolutely brilliant. The question I have is why do we pretend when our loved ones die that nothing happened? It seems counterproductive, especially when the art of grieving and surviving a loss is to talk, share stories, and to remember. My hunch however, is that others around us are just not sure how to talk with us and sit with us in grief.
Peter and I participated in the DC Pediatric Palliative Care Collaboration conference today. In fact, for over two days, we have been prepping and chatting about the panel so that we would have unique points to contribute.
The panel was entitled, "Knowing who we are: A Family Panel." In attendance, were over 200 participants, who were either, doctors, nurses, social workers, or chaplains (most of whom Peter observed were women). Attending the conference yesterday helped me have a feeling for who I would be talking to today. I will share our observations about the panel below, but I do want to say that Peter and I work very hard to make sure that Margaret Mead's quote does not and will never apply to Mattie's life.
As a visual learner, I always have notes and I jot down keywords to trigger my thoughts whenever I speak in front of people. Today was no different. Well that is until I went to our pre-panel meeting. The two individuals running the panel, took away the dais, and wanted NO paperwork in front of us. I got the point, they wanted our audience to feel directly connected with us. Which was effective, but that made me have to switch gears.
In the panel pre-meeting, we had the opportunity to meet and introduce ourselves to the other participants. Two other families besides us were included. One family lost their premature baby four years ago. Their daughter was born at 24 weeks, and though she survived five months in the hospital after birth, she had complications and died. The other couple, lost their 18 year old son six years ago to leukemia. However, only the mom from this couple participated in the panel, the father did not feel comfortable sharing his story, which is completely understandable.
The father of the couple who lost their premature daughter, captured our attention. This was his first time ever speaking about his daughter in public. He was apprehensive to talk and wondered in the pre-meeting whether he could even do this. However, as he continued to speak, Peter and I instantly related to him and I have a feeling this camaraderie helped put all of us at ease.
For just a glimmer today, I felt a portion of my former self come alive. While talking about Mattie, I could feel my energy, my passion, my ability to put thoughts and concepts together, and my ability to draw people into our story come alive. In a way, I reverted back to the energy I used to bring into my teaching. I was humorous, engaging, and compelling. I haven't felt this way about myself in a while, but I had the audience laughing at times, tearing at other times, and also seeing what I must have been like to deal with in a hospital setting. During certain occasions at the hospital, I wasn't nice, I could be very aggressive, and could take charge when I felt Mattie's care wasn't being properly handled or managed. This side of myself, came out today, and while talking, Peter was making hand gestures at times. For example, I went on a diatribe about the concept of "new normal." A phrase I absolutely detest, because at no point in Mattie's treatment was there anything NORMAL about what we were going through. Yet this is a term forced upon all cancer families at one point or another. As I was explaining this, Peter apparently motioned as if he was taking a pistol out of his pocket and shooting it into the air. Basically letting the audience know, that he considers me to be a "pistol packing Mama." I detested the concept of new normal, and I feel it is important for medical personnel to understand how insulting this notion can be.
A good portion of the panel was discussing how caring for a terminally ill child, and now living through grief can impact a marriage. Peter and I were very candid with the audience, as was the other couple. I explained to the audience that our marriage not only went through a difficult time after Mattie died, but in essence our marriage was degrading for 15 months while Mattie was battling cancer. I mentioned that all good marriages require work and communication, neither of which we had the time or energy to do while caring for Mattie full time. During Mattie's cancer battle, we rarely spoke to each other (since Mattie did not want to hear talking most times in his room, we basically communicated to each other in text messages), and one of us was always sleeping with Mattie to make sure he was safe and secure. So after Mattie died, yes we were dealing with grief, but we were dealing with a non-existent relationship as well. As the other couple mentioned today, what we all survived, typically destroys a marriage. Indeed!
The audience was very grateful to hear Peter's perspective because typically it is hard to get a grieving father to talk, much less to talk to hundreds of people. Peter did an outstanding job. He typically doesn't like to talk because he lands up in tears, but today he was powerful and got his message across beautifully (though I think whether he cries or not, his messages are always powerful!). In fact, when the floor was opened up to the audience to ask questions, the first question was posed to Peter by a physician. This physician, who is a pediatric oncologist, started to talk to Peter about how it is important for a caregiver to care for one's self! She then went on to ask him would he have done anything differently to take better care of himself back then, since she deemed his lifestyle of working full time and then sleeping in the hospital to be over the top. As she was asking the question, Peter put his hand on my knee. He did this because he knew I was going to blast her out of her chair. He responded to her and explained why he wouldn't have changed a thing that he did. He also told her that he did what he felt had to be done.
After Peter spoke, I then chimed in. As Peter said to me tonight, he grabbed my knee during the presentation because he knew that in about a few seconds this doctor wouldn't know what hit her! I told the doctor that one of the biggest mistakes hospital personnel make is they do not assess the familial relationship prior to the cancer diagnosis. That can be done easily by just asking a few questions of the family. As I told her, in my case I was always a "helicopter" mom, and therefore if I was very present in Mattie's healthy life, how on earth, would I leave him for a second while battling cancer? The answer is I wouldn't. I also told her that she needs to trust her families, because we all get to a point when we know we need a break, and when we do, we will take it. The decision to take a break MUST come from us and NOT be dictated to us by others. I also told her, that now that Mattie is gone for two years, I can safely say on stage that if I did take those breaks, by going shopping or to a spa like others suggested, I would be very disappointed in myself today. Yes I gave up a lot, and it came at a great expense to my physical and mental health, but I live with no regrets about the time I spent with Mattie. With that she turned as red as a beet, and I knew I got my point across.
The panel presentation ran for about one hour and 45 minutes. After it was over, Peter and I had a line of people who wanted to speak with us. As several people told us today, Mattie would have been proud of us, and that was lovely to hear. I also met a nursing student who came up to me and let me know that based on what I said, this has changed her whole view on the importance of connecting with one's patients. The feedback today was positive and powerful, and these comments will stick with us for quite some time. I was so proud of Peter because he basically helped this other father have confidence in himself and in his story, and I could see that after the presentation was over, these two dads felt connected with one another. This other dad confided in Peter and they had a solid interchange which I hope continues after this event. This type of connection is rare, particularly because I have found other dads are hesitant to open up and be vulnerable. The panel was very meaningful and very healing. Typically I do not like hearing other parents' stories, but these two families blended so well with us and what we learned is that we had great commonalities, despite our differences.
The one thing that surprised me was the realization that Peter and I came to a while ago, yet it was novel to the other two couples today. Peter and I determined about two months into our bereavement process that we were grieving differently, yet that did not mean we weren't in pain or didn't love each other. It just meant we were in different places emotional at the same time. I could have been numb and Peter crying or vice verse. We concluded that this was okay and normal back in 2009, and we uphold this belief even today. I was happy that this philosophy resonated with the other families as well.