Tonight's picture was taken in June of 2003. We were at a park in Great Falls, VA. Mattie was one year old and as you can see he had his first encounter with a Canadian Goose. I am not sure who was more intrigued by the other, Mattie by the goose, or the goose by Mattie. Either case, Mattie loved animals of all kinds and thanks to our cat Patches, Mattie learned how to approach an animal, how to respect their space, and how to interact with them.
Quote of the day: No person was ever honored for what he received. Honor has been the reward for what he gave. ~ Calvin Coolidge
It was a warm day in Washington, DC today! I like warm, but it was even on the hot side for me with the humidity. Nonetheless, my friend Heidi and I sat outside together and had lunch. I personally love the heat and humidity, it makes me feel good, and I was happy to see Heidi shared this feeling. To me there is something special about eating outside. I love the fresh air, people watching, and dog watching as well. In fact, while having lunch, a woman and her dog passed us by and we were both introduced to Sadie (the dog). One of the reasons I like this particular restaurant that we met at is that it has a community feel and it sits on a tree lined street. Something that I really do not get much of when in DC.
Heidi and I talked about a whole bunch of things this afternoon and I even reflected with her upon the week leading up to Mattie's death. I am reflecting on this time in our lives since I was just introduced to a mom this week who lost her only child to cancer two weeks ago. In order to understand where this mom is coming from, I really do need to think about what my first few weeks looked like after Mattie died. One thing though that stands out to me from reading this other mom's blog and from my own experience is that we were all fighting for our child's life up until the very end. I honestly think we both thought we had more time. So the question is why is that? As a mom you do not want to believe your child is dying, it is a reality too horrific to state much less accept, but I think it is even worse when the medical staff around you do not explain the reality of the picture in front of you.
I still remember one of Mattie's doctors talking to me about the drainage tube that was surgically inserted into Mattie's abdomen to drain fluid building up in his body. Somehow I thought this tube would solve all our imminent problems and we would proceed with the next course of treatment. It never dawned on me that Mattie was dying. It did not dawn on me because Mattie's doctors did not tell me what was going on, instead it was Mattie's nurses who confronted me and told me the truth. Mattie developed Ascites, which is an accumulation of fluid in the peritoneal cavity, this can happen with metastatic cancer and really when the end is near. But how would I know that!???
Medical doctors are healers first and foremost and therefore they DO whatever is medically possible to prolong life in many cases. It would be interesting to hear the internal dialogue of a medical doctor who helps a family with a dying child. I have to believe doctors know, maybe not when but, if a child is dying! So what prevents this conversation with the family? Mind you I am NOT saying all medical doctors are ill equipped to have such a dialogue, but I would say a MAJORITY indeed are!!! Do they feel that a child dying is a poor reflection on the type of care they provided? Do they feel they failed the family and the child? Or are they simply HUMAN and therefore were as disgusted and perplexed that Mattie's young life was being consumed by cancer as I was? There are a lot of what ifs in my mind.
After Mattie died, I remember reading that one of the roles of a oncologist is to provide HOPE. Yet this hope always has to be tempered with reality. In fact, the nature of the HOPE changes with time. In Mattie's case (and I am simplifying the example, since hope changed almost monthly in Mattie's care!!!), doctors in the beginning may have given us hope that the surgeries and chemotherapies would remove and shrink his tumors, however, once we learned that Mattie's illness was terminal, the hope no longer focused on a cure but it evolved to having hope that Mattie would die with dignity and without horrific pain (unfortunately that didn't happen for Mattie either!!!).
Why am I on this diatribe tonight? I guess as a parent who lost my only child, I reflect back on the last few weeks of Mattie's life. At the time it did not dawn on me to have a dialogue with Mattie about his wishes and desires for his legacy. In fact I did not even know about legacy building, until I recently attended a legacy lecture. Some hospitals have social workers who work with the dying child to create a legacy that the child can leave behind (letters, a picture book, reflections from the child to the parent, in the child's own words). Yes I maybe creating a legacy for Mattie now, but I have NO idea what his wishes were, how he wanted to be remembered and so forth. Personally I never thought about any of this while in the throws of treatment and while Mattie was dying. I did not think about it until I attended this palliative care lecture series and at the end of the session I felt deeply saddened as if I did something wrong, since I did not help to give Mattie a voice in the end and into the future.
So what's the moral of the story? I honestly think that avoiding discussion about the pending death of a child is not beneficial in the long run. I am not saying that it is easy to confront a parent in the hospital, but perhaps it would have given Peter and me time to process Mattie's death with him, and to begin the grief process. Instead, after Mattie died, I was so traumatized from Mattie's death that it took me over a year to truly begin the lifetime grieving process. There are no right or wrong answers, dealing with the death of a child is different for every family. However yesterday while talking with the psycho-oncologists working on the psychosocial standards, the issues surrounding bereavement care were discussed. It was refreshing to hear that these professionals immediately got what I was saying. For so many parents once their child dies, that is it! That is the end of supportive services from the hospital. Sure you may get a card on anniversaries and be invited to a once a year remembrance ceremony in the hospital's chapel, but SO much more support is needed. This is passive support, when active support is truly necessary.
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