Saturday, January 12, 2013

Saturday, January 12, 2013

Tonight's picture was taken in June of 2003 on our weekend nature trip to Great Falls, VA. This was one of Mattie's favorite forms of transportation. Mattie strongly disliked his stroller and though he was over one year old, he wasn't walking at that point. When we got this back pack, it changed our lives immensely. Mattie loved the height and the bouncing around on Peter's back!


Quote of the day: Who can believe that there is no soul behind those luminous eyes! ~ Theophile Gautier

Peter and I went for a walk today. We went to Potomac Overlook Park. I had no recollection of being to this park before, despite Peter telling me that I had. As we kept on walking, we passed several gardens and then instantly I remembered coming to these gardens with Mattie. After walking at that park, we then drove to Windy Run park, where this picture was taken. This walk was quite rocky and hilly but provided a wonderful view of the Potomac River. While on our walking journey, we passed a family who had their son in a backpack, not unlike the picture above with Mattie on Peter's back. It brought back memories to me!

Patches is having a rough time. She can't hold down any food today without throwing it back up. We are watching her closely, but it is clear to us that she isn't happy or feeling well. So unfortunately we have big decisions to make soon about her life.

This evening Peter and I had the opportunity to go out to dinner with a couple we met a two years ago at a cancer event. This couple lost their 7 year old son to cancer in 2010. We share that in common, but we also share the fact that our sons were our only children. It is rare to find a couple who lost an only child to cancer. When we met at other events prior to tonight, we seemed to connect, and in fact the father in this couple served on our parent panel during the Mattie Miracle Cancer Foundation Psychosocial Symposium in March of 2012.

 

We had over a four hour dinner tonight and in many ways it was like having our own support group meeting. In so many ways, looking and listening to this couple is like looking and listening to Peter and I. I know sometimes people I come across view Peter and I as having issues, that we are unable to move on, and that we have a problem! However, the reality is this is NOT true! When you interact with other parents who have lost a child to cancer, you will see that Peter and I are NOT unique. We survived things, horrific things that can't be erased, nor can they be brushed aside. They are within us, and no matter how much someone wants us to move on, it isn't going to happen. It can't happen, and it can't happen because our lives have been permanently altered. I suspect until you survive months of harrowing cancer treatment, watch your child in excruciating pain, see your child flat line, and die being unable to breath, you will never get us 100%. Thankfully of course!!! I am thankful for all of you who have healthy children, but at the same time, it pains me that I can no longer live your life.

 

Talking to this couple tonight was not only validating but normalizing. Peter and this dad have a lot in common and I am so glad they can emote these feelings with one another. It is rare to find men who can do this, much less a man who can handle talking about the death of his child! I sometimes feel like no one can understand why it is hard for me to be around other moms. When you put a group of moms together, the natural thing for them to talk about is their children. However, at times it is hard to hear about other children, when we know we are no longer moms. One comment stuck with me tonight. This mom said to me that people can see us smiling and therefore think we are fine. But what they don't understand is we are still thinking about our children always. We see our children in everything we experience and do, and we carry this memory and loss with us in every interaction during every hour and minute of the day. 

 

What tonight's dinner illustrated to me is that we are not alone. Other parents who lost a child to cancer feel, think, and experience the world and those around us in similar ways. I would say the analogy of what this feels like is equivalent to visiting a foreign country where NO one speaks your language. Then by happenstance you run into a fellow American, a person who gets everything you are saying! That was what dinner was like tonight.... we were understood!