Tuesday, July 17, 2012

Tuesday, July 17, 2012 -- Mattie died 149 weeks ago today.

Tonight's picture was taken in August of 2008, during Mattie's first admission week to the hospital for chemotherapy. This picture is the sequel to last night's picture that I posted and described. As you can see here, Mattie and Charlotte connected over this unique painting project (which took place in the PICU hallway) and for that moment in time things seemed happy and back to normal. In the beginning play dates at the hospital were very good for Mattie, but as time went on and Mattie became sicker, play dates were more challenging. They became harder because at that point, Mattie knew exactly what he was missing. He knew that after the play date was over, his friends would leave the hospital and go back to their normal routines, and he would remain feeling isolated, infused with medications that made him feel sicker, weaker, and DIFFERENT!


Quote of the day: It is interesting to notice how some minds seem almost to create themselves, springing up under every disadvantage, and working their solitary but irresistible way through a thousand obstacles. ~ Washington Irving


I had the opportunity today to see Ann's mom, Mary. I sat with Mary while she was getting her hair done, and then we all went out to lunch. As I have reported before on the blog, Mary has been basically mute for months. I miss the days of our two way conversations, however, while at lunch out of the blue Mary started singing Happy Birthday to me. Today is not my birthday, but it is in the month of July. How she put two and two together and figured out this was my birthday month is beyond me, but to hear her singing and smiling were priceless. One can say what they will about us, but I stick to my conclusion that Mary and I are connected to each because we both share a profound loss, the loss of our sons.

While sitting with Mary at the salon, a fellow preschool mom that both Ann and I know came in with her children. I initially took part in their conversation, but then quickly removed myself from it because the dialogue was about summer, activities with kids, and school. Things I know all too well about, but things that do not impact my life anymore. Not by choice, but by circumstances. I am not suggesting that moms should stop talking about these normal things around me, but what I have found is some moms seem to know how to integrate these topics into their conversation and yet include me in them, and seek out my input. Which in essence enables me to still feel like a mom rather than so different from them. But this art form and balance are rare. Nonetheless, some of my friends can and do accomplish this which is greatly appreciated.

I have also found that moms who include me in their dialogue are also more accepting of my feelings, try to understand those feelings, and accept what loss looks like for me. They do not deem me as having a problem, but that a problem has been thrust upon me. The outcome of this is I can let down my guard, I can be myself, and therefore feel less defensive. However, when I feel you do not understand the loss that Mattie has on my life, and you continue to chat as if nothing has happened, that is when you lose me. Which is what happened today. I see growth in myself however, because in the past this type of interaction would have greatly upset me. Now, I am used to it, make note of it, and can rationalize that the issues aren't with me, because fortunately I have very open conversations with some friends about their lives, children, and so forth.

I have had many people tell me that they do not know how to talk to someone who has lost a child to cancer. Some parents are going to be more open about this loss than others. Some may want to talk about it, like me, and others may not. However, from my perspective to expect that any of us will remain the same or unchanged by this loss is not realistic. I have been told that sometimes people feel like they are walking on eggshells around people like myself. I can certainly understand why, your feelings are very natural, and I would have them too if I were in your shoes. The death of a child is awkward, devastating, and unnatural, and puts us all off balance. But at the heart of the matter is two things, those of us who lost a child, want others to remember our children and keep that memory alive, and second acknowledge the fact that we will always be a parent to these children. That sounds so simple, and yet I have found it is quite complicated to implement, because I suspect people fear bringing up memories, saying the dead child's name, and making a parent reminisce. However, whether you do these things for us or not, they happen. We do these things to ourselves, and for the most part there is nothing you can do or say  about the loss of a child that will make it worse than not being interested or talking to us about it.