Tonight's picture was taken in October of 2007. We took Mattie to a park by the Potomac River one weekend, and I brought a picnic lunch and Peter brought Mattie's soccer ball. I remember Mattie as a boy in perpetual motion at all times. He had two speeds...... on and off, and when he was on, he expected you to keep up with him. That particular afternoon, after Peter and Mattie played ball together, they sat down together and I found their proximity so touching that I snapped a picture. There was a different expression on each of their faces, but both seemed to be reflecting love and happiness to me.
Quote of the day: When you grow old or ill, the most important things to you will be who and what you've loved. ~ June Martin
It is hard to believe that this marks the 63rd week of Mattie's death. Time, people, and situations continue on, and yet for Peter and I we can recall that Tuesday, 63 weeks ago, as if it were yesterday. It is a day that has and will always impact our lives. In the midst of our reflection, we have received so many e-mails in the past two days about the glorious moon. Last night was a full moon, and though we went outside to look at it, there was a cloud or marine layer in the sky preventing us from getting a clear shot. However, many of you shared your stories about your spotting of Mattie Moon. For some of us, the moon is no longer just the moon. It has a name and an identity..... Mattie!
I went to the mall bright and early this morning. In fact, the mall opens up for walking traffic before the stores actually open. So, it was my thinking that I would sit, have tea, and read my book. However, what I wasn't expecting is the music blaring so loudly in the mall. In fact, there was not a place in the mall that I could go to to escape the sound. The mall is completely decorated for Christmas and the music blasting out at all of us was Christmas music. Needless to say, unlike what I intended, this was NOT relaxing, nor could I concentrate on reading. Prior to Mattie developing cancer, I could read, write, and concentrate with just about anything going on in the background. However, after Mattie's cancer and death, I need complete silence to think and process information. It is almost hard to imagine that I entered the PICU one way, and exited a completely different person. Within a two year time span, I have found that I can't stand loud noises, I despise crowds, confusion, and commotion. So instead of reading, I landed up sitting on a bench watching people and becoming upset. Various things today brought tears to my eyes. While immersed in my own feelings, I was observing a mom helping her adult son, who had severe physical impairments, eat his breakfast. She could not address her own needs because he clearly needed her undivided attention. I stopped and paused from my own thoughts, to reflect on her life, her dedication, and her selflessness to her son. Caregivers, to an adult or child with impairments, are special people to me, and seeing this mom with her son today reminded me of the intense role I played in Mattie's life after his surgeries.
I went to the mall today on a mission to buy a dress. Peter and I are attending another Georgetown University Hospital fundraiser in December, and I learned that the attire is dressy. I must have tried on about 20 or more dresses today. My goal was to get a dress that wasn't black. I did not succeed. I tried on purple and red dresses, but they just did not work. I actually was going to settle for this one particular purple dress, but I could see the salesperson just wasn't happy with the way I looked in it. She did not say it in so many words, but I am good at reading between the lines. I could tell she was on a mission to help me, and the dress I finally bought reminds me of a dress my mom bought me for my prom during my senior year of high school. The style is different clearly, but the concept of black lace with a gold underlay is similar. Funny how this dress found its way to me today.
Later in the day, I headed over to the Georgetown University Hospital, where I met Brandon (Mattie's big buddy) and his mom, Toni for lunch. While sitting together, several nurses came over to say hello to us. The first nurse I saw who came to give me a big hug was Erin. Erin was one of Mattie's nurses who I will never forget. Erin taught me how to change Mattie's brovaic (central line) dressing using "chester chest." Chester was a dummy, but even trying to learn on Chester freaked me out at first. Erin is calm, doesn't raise her voice, and is extremely patient. So she was a good match for me. However, throughout Mattie's treatments, Erin was not only a competent nurse but a compassionate one. She would see me in the hallway some days and would just come up and give me a hug. I clearly looked lost and in need of a hug on MANY occasions, and frankly when overwhelmed and sad at the same time hugs are more affective than words. I distinctly recall one night, when Peter went home (to get rest, something he rarely did) and I was in the PICU with Mattie just about to the publish the blog, when I lost the whole thing. Mind you it was about midnight at that point. I was mortified because blog postings take a great deal of time and effort some days. Erin entered Mattie's room as I was in a panic about the blog and I told her I lost the whole posting and I did not know how I could recreate it and entertain Mattie at the same time. Erin understood (as did MANY of the HEM/ONC nurses) that the blog was important to me and had to get done. So literally Erin brought in white paper that night and we got crayons out, and she inspired Mattie to draw her several pictures. Honestly he must have created for her at least four pictures that evening, and I know several are still on her refrigerator today! Mattie was motivated to do this for Erin, and this among many other acts of kindness remain with me today.
I enjoyed seeing Erin, along with Debbi (our sedation nurse angel) who I have the pleasure of seeing on a regular basis, and Alice. Alice is a pediatric nurse administrator. While Mattie was in the hospital, I usually saw Alice when I had a problem. However, now that I am on the parent advisory board at the Hospital, I see Alice on a regular basis, and am getting to know her better. Debbi emailed me later today and she told me she rarely goes to this particular restaurant on the Hospital's campus. So in essence we were meant to see each other day today. In fact, Mattie introduced me to a whole new world, filled with extraordinary people. People I would have never met without cancer. I most certainly could have done without cancer and Mattie's death, but I feel sorry for patients and their families who do not have access to the caliber HEM/ONC nurse that is present at Georgetown.
Toni, Brandon, and I had a lot to talk about. Toni told me that she thinks of Mattie all the time, and how last night's moon caught her attention. She was outside throwing out her garbage, and she couldn't get over how bright it was. When she looked up in the sky, she said there was "Mattie moon!" Toni is a preschool teacher and this week while digging in the school sandbox with the kids, she came across an acorn with its cap on. Toni was amazed that this acorn remained intact within the sand, and she picked it up and saved it. Definitely a Mattie move! Mattie has rubbed off on so many of us, and I loved hearing these stories.
Toni reflected on pictures of Brandon when he was a young boy. As I reflected on Mattie's baby pictures. Neither one of them had any physical indications that they were going to develop cancer a few years later. Nonetheless, Toni and I are part of the same club, a club that alters your life and perspective forever. As I told her and Brandon today, talking and listening to cancer stories now is NOT easy for me. However, Brandon and Mattie were so close and went through treatment together. They were good buddies for each other, and connecting with them is different from hearing a cancer story from someone new in my life. Brandon is NOT new to me, he is an integral part of our story and battle.
In the midst of reflecting on our days in treatment, we thought about Jenny, Jessie, Whitney, Lesley, Meg and Laura. Jenny and Jessie were Mattie's art therapists, and Whitney, Lesley, Meg and Laura were Mattie's childlife interns. As my faithful readers will remember, Jenny and Jessie were incredible art therapists. They stimulated, engaged, and supported Mattie in ways too numerous to mention here. These two individuals made the Lombardi Clinic special. They were like two rays of sunshine in a very intimidating and sometimes depressing place. They were the perfect therapists for Mattie, because their philosophy was to have the child direct the art, NOT the therapist assign a task. This made their job much more challenging, because on any given day, they were helping children with clay, paint, model magic and other media all at one time. That meant a lot of juggling, but they did it smoothly, effectively, and with great skill. I can't imagine what art therapy would have looked like for Mattie if he was told on a given day what media he had to work with. For Mattie the beauty of creating came from within, and Jenny and Jessie embraced this and empowered Mattie to make his own decisions. A key point for a child undergoing cancer treatment, because SO little is under their own control. This therapeutic duo is NO longer at Georgetown, and this saddens me. I can assure you the old saying.... no one is irreplaceable, is definitely FALSE in this case. Their physical presence may not be in the clinic, but the memories captured with them remain in that space always.
After Toni, Brandon, and I said our goodbyes, I got in the car and headed to the grocery store. When Peter and I first moved to Washington, DC, we shopped at a Safeway in Georgetown. However, over the years, we migrated away from the store. While Mattie was battling cancer, this store was being renovated. So I decided to visit this new store today. All I can say is WOW! It is hard to believe it is the same store we used to shop at years ago. Frankly the store looked like a huge Whole Foods, except the aisles weren't narrow, people weren't on top of each other, and everyone in the store was lovely. While shopping there, I text messaged Peter several times because I couldn't believe I was in a Safeway. Things were displayed so creatively and the slightest look of confusion on my face, produced instantaneous help from people within the store. My dad and I both love grocery shopping, and as I was roaming around, all I could think to myself was.... wow Daddy do I have a store to show you!
I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen, who thinks of us each Tuesday. Kristen wrote, "As Thanksgiving day nears and the Christmas season begins know that I am thinking of you. A second Thanksgiving without Mattie will be no less difficult than the first...I am keeping you all in my thoughts this Tuesday and everyday."
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