Tonight's picture was taken in March of 2009. Next to Mattie was Meg. At the time, Meg was a new child life intern. We went through several interns while at Georgetown. Mainly because we lived at the hospital for over a year. Prior to Meg, we had Whitney and Lesley, who we had come to love and adore. So naturally, having to say good-bye to young women you had come to know and trust was hard. This was the environment Meg walked into. Also Meg walked into a sicker and more traumatically fragile Mattie. Somehow that did not stop her. Mattie was more fragile and I was more protective and volatile. I don't think I snapped Meg's head off the first time I met her, but her style was different from Whitney and Lesley's. Meg is bold and full of energy, not unlike my Mattie. So guess who responded to her RIGHT away. Mattie would challenge her and yet she did not back away, she seemed to be able to take it, and yet in her own subtle and very professionally appropriate manner would egg him on, so that Mattie would want to come out of his shell, Mattie would want to participate in physical therapy, and would want to play and be a part of the world. I did not question why it was working, I was just grateful to Meg that she had a channel into getting and relating to Mattie.
Quote of the day: Bill Hemmer: "You said cancer changes your life, and oftentimes for the better."Joel Siegel: "Yes.... Gilda Radner... said this in her book. What cancer does is, it forces you to focus, to prioritize, and you learn what's important. I mean, I don't sweat the small stuff. I used to get angry at cab drivers. It's not worth it.... And when somebody says you have cancer, you realize it's all small stuff. And what Gilda said is, if it weren't for the downside, everyone would want to have it. But there is a downside." ~ American Morning, CNN, 13 June 2003
Tonight's quote captured my attention when I read it. Many times when we think about cancer, we naturally think of only the horrors. As we should, because really the horrors outweigh any benefits. In fact, I am not even sure I feel good using the word benefit and cancer in the same sentence. But with that said, when you experience cancer in some shape or form, even as a caregiver, it does profoundly change your life. Which was what Gilda Radner was referring to.
I remember when Mattie was diagnosed with cancer and we were in the hospital battling his disease, I honestly wasn't thinking about any sort of schedule. I wasn't worried about what I was doing tomorrow. What work deliverables were due. What needed to be scheduled next week or next month. There were NO plans, I did nothing, planned nothing. I did not go grocery shopping, I did not clean our home, I did not get the mail, I did nothing. It is like I took a moratorium on living. The only sole focus I had was caring for Mattie. I say only, lightly. Because only was INTENSE. I took on 24/7 care, nursing care. I learned about medicine administration, dosages, pain pumps, broviacs, infections, and the list went on. Back then I longed for the normal chores! Yet giving up the normal everyday tasks enabled me to live in the moment. To be fully present with Mattie. To play, to listen, and to not be distracted. It is hard to do that in the real world, when you maybe working with all sorts of distractions pulling at your time and attention. So unfortunately I truly get the reality of Gilda Radner's message.
This fall as I went through Mattie's clothes, I set several pieces aside to give to my friend Terri. I met Terri at Georgetown Hospital. Her son is a cancer survivor. Terri is a master quilter and I decided to have her create a memory quilt for me using over 20 shirts and items of Mattie's. She has been working on it for a while, but it should be done some time in April for Mattie's 12th birthday. Terri and I talked about it last night on the phone. As we were talking, it was ironic that Mattie's clothes told a story about him. It was very evident to Terri that Mattie loved nature and animals from his clothes. All of which is true! But I included all sorts of interesting clothing items for Terri to incorporate into this quilt such as Mattie's santa suit. Which was the suit he took his first Christmas photo in, his super Mattie cape that Jenny (his art therapist) made for him at the Hospital, his puppy dog onesie with actual floppy ears, and the list just continues. I have a feeling Terri is giving this quilt a three-D quality since I have seen some of her masterpieces. I look forward to seeing it and capturing some of Mattie's memories in this way.
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