Thursday, September 21, 2017

Thursday, September 21, 2017

Tonight's picture was taken in June of 2009. Immediately after Mattie's sternotomy. Mattie's sternotomy was a surgery that entailed cutting through his chest and breast bone and going in to remove 9 lung tumors. Bone cancer that had metastasized to his lungs. Given that Mattie had two major 12-14 hours surgeries prior to this one, we weren't sure what to expect. However, in comparison to the limb salvaging surgeries, the sternotomy ran smoothly, and his recovery was actually much faster. Though when you see this photo, clearly Mattie was knocked out for the count, and had all sorts of blood pressure cuffs, catheters and drains coming out of him. It was daunting, stressful, and now in retrospect hard to believe that about two months after this surgery Mattie's cancer spread throughout his body. 


Quote of the day: There can be no deep disappointment where there is not deep love. ~ Martin Luther King Jr.



I think Martin Luther King's quote was brilliant. Because we can't really get upset over things that we aren't truly emotionally invested in. Before Mattie got cancer, I would say like any of us I had my share of disappointments. Yet with time I was able to put them into context and move on. Yet when an issue arises now and it revolves around Mattie, Mattie's memory, or the work we are doing on Mattie's behalf, disappointments constantly present themselves and unfortunately when they do they are NOT forgotten! 

The positive aspect of going to an event like Curefest last week, is that Peter and I came into contact with hundreds of bereaved parents in one consolidated time frame. It gives us incredible insights and also confirms to me that NO ONE gets over the loss of a child. We met parents who recently lost a child as well as parents like ourselves who are in this for the long haul. Ironically you would think that the ones who are newly bereaved would be the most heart breaking. But frankly they are too raw to know how they are feeling and this constant state of being in shock is actually a very beneficial defense mechanism that does enable us to block out certain things in order to be able to function and get up each morning. With time, those defenses come down and this is when all hell breaks lose. 

However, our conversations under our tent last weekend also pointed to the topic of disappointments. We can be disappointed by our friends, our family, our medical team, and society in general. There is a lot of sadness, anger and hurt to go around. But it isn't like all these emotions are going anywhere, there is no outlet for them. They remain with us always, it is just we get better at tempering and controlling them over time. I heard many parents talk about their child and how they as parents felt like they had been forgotten after the first year of bereavement. Totally can understand that and also relate to that hurt. What do we do about it? We can't change people's feelings or thoughts! So instead I see the number one way many of us deal with this is disengaging from others and the world. It is a way to temporarily regain equilibrium until we find a way to re-engage back in. I am not sure other parents would describe it this way, but in essence this is what is happening. 

I met a parent who lost an only child last weekend and she described her time on earth now as a prison sentence. Each day is the same, trapped with the same thoughts, feelings, emotions, and loss. Yet despite how horrible that may sound, when we both said good-bye to each other, we basically said.... "from one parole to another..... it was wonderful to meet you and find someone who understands." Not every bereaved parent can articulate thoughts and feelings, but when you find one who can, it can be a very positive experience because at the end of the day, it validates that we aren't going crazy, losing our minds, and are allowed to be rightfully disappointed.