Tuesday, November 16, 2010

Tuesday, November 16, 2010 -- Mattie died 62 weeks ago today.

Tonight's picture was taken in June of 2009. Mattie was visiting Tanja's house, and had a full day of excitement with her, Katharina, and Ann's children. Mattie got to go on Katharina's tree swing with me, he got to pop bubbles in their backyard, and even attended their neighborhood picnic. But I think what stood out most to Mattie that day was meeting Ginny. Ginny is Katharina's pet bird. As you can see Ginny found a very comfortable resting place on Mattie's Curious George knee immobilizer. In fact Ginny blended in beautifully with Mattie's t-shirt. Ginny and Mattie had a natural rapport that day, and unlike me, when Ginny flew up to Mattie, Mattie was calm and relaxed about it. As I reflect on Mattie's 62nd week that he is gone from our lives, I remember his love for animals and his connection to nature. To me, this picture illustrates that connection.

Quote of the day: There is no pain so great as the memory of joy in present grief. ~ Aeschylus


I began my day by visiting my six year old friend, Abby. Abby is the daughter of my friend, Mary (and I don't mean Ann's mom!). Abby wasn't feeling well and is home from school this week. I played with Abby this morning so that Mary could go to her other daughter's holiday event at school. I had the pleasure of getting to know Abby before so I already had a feeling for some of the things she likes to do. We watched a Scooby Doo episode together, and I naturally couldn't help but think of Mattie. Mattie LOVED Scooby Doo and I do not think there is an episode out there that Peter and I haven't seen, and multiple times! After the episode was over, Abby and I played solidly until Mary came home. Abby loves board games and she is a good player. Some of the games I had never played before, but she took the time to explain the rules of each of the games to me, which I appreciated. I can officially say I LOST every game today. Frankly after playing with Mattie intensely for over a year in the hospital (around the clock), I perfected the art of losing. I could lose on a continuum, and the more significant the loss the funnier I would get! Mattie loved it! Together Abby and I played several rounds of Uno, Sorry, Ungle Wiggy, Caraboo Island, Slamwich, and a Scooby Doo game. I LOST every time! It was humbling and Abby was laughing. We had a fun time together, and I appreciated her initiative to pick up and put away every item we played with. I of course helped her, but her thoughtfulness and sense of responsibility caught my attention.

I spent a couple of hours today reading the book, Saving Henry. I have written about this book before on the blog, and I find because of its emotionally laden content, it takes me longer to sift through the chapters. One thing that is apparent from reading this book, is that mothers will go through great lengths to try to save their children. I can relate to many of the feelings Laurie (the author) expresses in the book, from feeling powerless to help your child to feeling socially isolated from everyone. I am about half way done with the book, and I know unfortunately like Mattie, Henry did not make it.

On Tuesdays I try to help Ann out and pick her son, Michael, up from school. Each time Michael and I are together, he usually mentions Mattie or asks me a question about him. Last week's question was about Mattie's hair. Michael couldn't remember Mattie with hair or Mattie healthy for that matter. I can certainly relate to that and since I was Mattie's full time caregiver, I find it much harder to remember the healthy days. The cancer days are ever present to me. Today, while driving Michael home, he picked out a Highlights magazine of Mattie's that is still in the car. Instead of tossing it somewhere, he actually opened it up and was reading it to me. He told me he loved Highlights when he was younger. In the magazine there were all sorts of brain teasers, and Michael asked me each one, and I tried to respond. I appreciate Michael's questions, his sense of humor, and his singing voice.

This evening, I attended the Georgetown Hospital Pediatric Advisory Board. This is only my second meeting I have attended, since I am a relatively new board member. There are some topics I can become very passionate about, and when I do, I imagine that others are not sure how to react to me. One topic that we discussed is the necessity of training doctors and nurses on end of life care. Specifically how to help a dying child and his/her family. We were told that doctors are given outstanding ethics training regarding this issue. I have no doubt! But as I explained, we are NOT talking about an ethics issue. When helping someone die, along with their family, it requires professionals to understand, listen, and process feelings. It means being emotionally present for the devastating news a family has to face, and the potentially challenging issues that arise throughout the dying process. So from my perspective, I am talking about the humanistic and existential concerns that families and children face when dying, which are NOT black or white (like ethics), but instead filled with many shades of gray. I described Mattie's death as an illustration.

The doctor on the board told us that there is a protocol for each pediatric team as it relates to giving families bad news. Bad news, such as death, is delivered by a doctor. Well I addressed that issue right off the bat. What if circumstances arise so that this protocol isn't followed? What if a nurse has to give this news? Then what? In fact, despite doctors coming in and out of Mattie's room, none of them had the courage to tell me.... Mattie is dying. It was two nurses who confronted me, and when they told me, I was utterly shocked. However, after they told me, the question is now what? What is a nurse's role in helping a family whose child is dying? Clearly there has to be a role, since they are really the ones who do the one on one care in a hospital. In our case, we were fortunate, and though Mattie's nurses haven't lost many patients over the years, they rose to the occasion and helped us in extraordinary ways. But as I mentioned to the board, there needs to be a procedure in place for all medical personnel to follow when a family is in crisis, and I also expressed my concern for the nurses. Who cares for the caregiver after they have witnessed and helped a child with cancer die? This is a very valid question because of the close nature with which these nurses work with their patients and their families. My point in telling you this is by the time this two hour meeting was over, I was emotionally finished. I could remember Mattie's death and could visualize it. It is in times like this when I know most of the other board members have not lost their children and I feel out of place. Because they can't possibly understand me. Yes we may have all had to cope with seriously ill children at one point, but they did not see their children die. This is a big distinction. By the time I got home, I was upset, and Peter as usual got it right away.

I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen, who remembers us each Tuesday! Kristen wrote, "I want to thank you. Everyday, when I think of you both and Mattie I reflect on life; its innocence and danger, its joy and humility, its long days spent waiting and its immeasurable losses blinked away. Thank you for giving me inspiration to find the blessings in the little moments of each day. Thinking of you this Tuesday and every day. Much Love."