Tuesday, March 27, 2012

Tuesday, March 27, 2012 -- Mattie died 133 weeks ago today.

Tonight's picture was taken in April of 2005, at Mattie's third birthday party. Sitting on our couch was Mattie and a friend we had gotten to know while searching for preschools. In fact, this little boy's mom and I gravitated to each other at a preschool open house! As we described our boys to the preschool director, we realized our boys had many of the same sensory issues, and therefore we latched onto each other. Unfortunately, this little boy's family was transferred out of DC for work only months after we met. I was saddened to see this family leave town. Any case, at Mattie's party, we hired a magician (a student I met at the George Washington University) who came with his own pet bunny named Hobbs. Mattie and his friend enjoyed petting and getting to know Hobbs.


Quote of the day: Kind words do not cost much. They never blister the tongue or lips. They make other people good-natured. They also produce their own image on men's souls, and a beautiful image it is. ~ Blaise Pascal

I truly believe in the sentiments this quote expresses. In so many ways, kind words are actually magical. Hearing them, can brighten up even the worst of days, they can inspire us, re-energize us, and most of all give us hope. I went to visit one of my friends today. She lost her dad suddenly to a heart attack a few days ago, and I wanted her to know I was thinking of her. After visiting her, she then text messaged me minutes later to tell me she thought I was one of the most "kind hearted people" she knows. I was very touched by her words especially since she is the one dealing with a huge loss. Those words have stayed with me all day, and I guess I needed to hear them because there were points during the day when I found that people wanted an emotional piece of me, and typically I can handle it. But in this particular case it was three very needy older adults back to back who either needed care, wanted to chat, or wanted to be heard. By the end of the third interaction, I just felt wiped out and was ready to scream. Perhaps because I have a lot on my mind with my own medical concerns.

I went to see one of my doctors today, and handed him the 60 page medical report. I figured door to door delivery would be better than mailing it! The doctor needed time to digest it and this afternoon, his assistant called me and I will be driving back to Maryland on Thursday to consult with him. This medical issue is like constant white noise in my mind. I know it is forever present and I have to deal with making some difficult decisions, and yet through it, I continue to work on Foundation events. My next major Foundation event is on May 20th, and typically I am much further along with Walk plans by this time of year than I am now. The reasoning for my delay has to do with the hours and weeks I devoted to the Symposium. Yet I have promised $25,000 to Georgetown University Hospital's Child Life Department, and therefore, I have to get my fundraising hat (not one that comes naturally to me) back on!

Another highlight of my day was having lunch with my friend Margaret (Mattie's preschool teacher). Margaret and I had a lot to catch up on, and I appreciate that she is a good listening and understanding ear about my medical issues. I typically do not like taking the "woes is me" attitude, but as I was talking with Margaret about some of my decisions, I could see that indeed many aspects about the decisions I have to make are just not fair. Though I may intuitively know that, it is nice to hear someone express that and try to relate to how I may be feeling!

Below are some more pictures from the Symposium that I would like to share with you!!!

Pictured with me is Holly. Holly is the director of Child Life at Fairfax INOVA Hospital. It was a pleasure to meet her, because as I told her I am a big fan of Child Life Specialists and appreciate the work they do each and every day for sick children and their families. Frankly before Mattie developed cancer, I had no idea what a Child Life professional was! But I learned quickly and at Georgetown Linda became not only Mattie's Child Life specialist, but a crucial part of our family care team. So much so, that when I have a medical problem even today, Linda is the one of the first people I email!

While I delivered my opening greeting at the Symposium, which I posted to the blog on March 20, I had this PowerPoint slide of photographs of Mattie behind me. I find when talking about a child, whether a survivor or angel, the child's face must be present. To me, a face and name makes the disease REAL!

After Peter and I gave greetings, Jon Agin addressed the audience and told us about his daughter, Alexis. Alexis is a DIPG (a type of brain cancer) angel, and as you can see from her pictures she was a real cutie. Peter and I felt that hearing from fathers throughout the day was IMPORTANT. Rarely are fathers heard and given a voice, and therefore we tried to incorporate their perspective into the day.

This is a picture of me with Bonnie. Bonnie is the executive director of several health licensing boards in the District of Columbia. Counseling, the one that I chair, is just one of the many boards she oversees! Bonnie attended the entire Foundation Symposium, electronically promoted our event on the DC licensure listserv, and also helped me secure continuing education credits for counselors, psychologists, social workers, and nurses! I have known Bonnie for many years, she knew me as a student, pregnant, as a mom, as a professor, and now as a bereaved mom. Recently Bonnie introduced me to a wonderful restaurant on Capitol Hill. I liked it so much, that the night before our Symposium, we took all our researchers out to dinner there!

I would like to end tonight's posting with a message from our friend and Mattie's oncologist. Though I do not post these messages every Tuesday, Kristen faithfully writes to us each week! Kristen wrote, "I hope you have had time to recover from the very successful symposium. You continue to amaze me! I am hopeful you get some answers today with your doctor's visit. And always, I'm thinking of you...this Tuesday and everyday."