Thursday, November 3, 2011

Thursday, November 3, 2011

Tonight's picture was taken in November of 2003. Mattie was a year and a half old here, and this is one of my favorite pictures. I can still recall taking it. We took Mattie to a farm one weekend, and this was his first up close and personal visit with a sheep. Mattie was thoroughly intrigued and his left hand so wanted to reach out and grab at the wool on that sheep's body. But we tried early on to teach Mattie about respecting animals and understanding their sensitivities and needs. Though I must admit, Patches (our cat) was Mattie's greatest teacher, and boy did she put up with a lot in the beginning. But she was patient and never ever tried to scratch Mattie, though she was provoked many times! Even Patches misses Mattie now, and it is evident to me when she sits on his bed and spends hours in his room near his stuffed animals.


Quote of the day: Suffering and joy teach us, if we allow them, how to make the leap of empathy, which transports us into the soul and heart of another person. ~ Fritz William

Peter and I started our day at Georgetown University Hospital. We met with one of the students from the business class that has adopted us as their community service project. As we were driving onto campus, we went into the main entrance, not the ER entrance (where I normally parked). As Peter was driving down the main drive of the hospital, we passed the building where Mattie did physical therapy and the building where Mattie had his hearing tests. I HATED that building, because it seemed like each time I went there, I learned that Mattie's hearing was further compromised. As I was passing those spots today, it was as if I was getting some sort of visceral reaction, I could feel being in those places, I could see Mattie there in his wheelchair, and I remember the sounds and conversations that occurred there. It was almost as if seeing these places  triggered a tape recorder in my mind to switch on, and it was replaying many events in those spots. It was an eerie feeling, because I typically do not come on campus and feel Mattie. But today was different.

We had a productive meeting with this young woman, who happens to be a professional grant writer. So Peter and I picked her brain about helping us locate applicable grants for the Foundation. As our meeting ended, Peter asked me if I ever thought about how Georgetown changed our life. It was a loaded question, because Peter got his MBA from Georgetown, and that degree opened many opportunities for Peter professionally. It is quite ironic that he would then return to his Alma mater to fight for his son's life and watch him die on campus. Needless to say, Georgetown was our home for over a year, and between the both of us, we know all the tricks on how to get from one building to the other in that labyrinth. Those who know me, know I am VERY directionally challenged, so if I know my way around somewhere, it speaks to the intensity of my experience there.

I had the wonderful opportunity to have tea today with my friend Mary. I met Mary at Mattie's preschool, and I see her on occasion since she lives right around the corner from Ann. Though Mary and I did not know each other well when we were both moms at Mattie's preschool, Mattie's story brought us together. In many ways, Mary and I have very similar parenting styles, and when she would come to deliver us dinner while Mattie was in the hospital, Peter and I got a chance to meet and get to know her two girls. The girls always came to visit, and Mary's youngest, Emily, immediately took to Peter. She would hug him and want his attention. That sweet gesture, I know always brightened Peter's day. Peter also gave Emily a stuffed animal unicorn, and my understanding is that this unicorn is considered a special item in her world. Each Halloween since Mattie died, Mary sends me a picture of her girls dressed up. Though seeing children is hard for me, I do look forward to receiving this picture each year. The girls are BIG Scooby Doo fans, and when I see their costumes from year to year, all I can think is Mattie would greatly approve of their selections!

Mary's girls consider Mattie their friend. But understand that these children really did not know each other in preschool. They were in different classes. Yet when Mary publicizes our annual Foundation Walk each spring, the girls are right beside her and they tell store owners and community members about the story of their friend Mattie. I have a feeling their hospital visits and the stories they heard about Mattie have impacted their lives in ways we don't quite imagine. In any case, I appreciated our connection today and though I am not sharing the extent of our conversation, I was very honored by what Mary was telling me. I received one of the highest praises I think one mom can give to another.

I spent the rest of the day at home. I will be attending a full day conference in Washington, DC on Friday. We have been invited to a Palliative Care conference and Peter and I will actually be presenting at this conference on Saturday. We are serving on a parent panel on Saturday which will be highlighting the experience of coping with a child who has a terminal illness and basically discussing lessons learned that will impact the medical community. As I was prepping for this discussion, I literally drew a blank. I was speechless, rather ironic, since I write about this daily. When Peter got home from work, we started to dialogue about this together, and then the thoughts began to flow, along with the tears. Reliving aspects of Mattie's treatment is painful, and when I hear what we lived through it is NOT at all surprising that our lives are forever changed and that I have completely down days.

I would like to end tonight's posting with a message from my friend and colleague, Nancy. Nancy wrote, "With the newsletter and the rereading of the mission of the Foundation, I had a new understanding of Peter and you. You eluded to this in the blog. Following the death of a child, some families decide that they want to have another child, not necessarily to replace the one who has died, yet, possibly to keep their sense of family in tact. For Peter and you, Mattie was it. He was your pride and joy, continuing to be your guiding spirit and he has received a lifetime of love from each of you. I see how the Foundation is another child. It is an outgrowth of Mattie, not a replacement. It gives some sense of connection with him for Peter and you and it definitely is handled with love and passion. I will never wonder about this issue again in regards to you, my friends."