Tuesday, October 18, 2011

Tuesday, October 18, 2011 -- Mattie died 110 weeks ago today.

Tonight's picture was taken in October of 2004. Mattie was about two and a half years old and this was his second Halloween costume. You have seen pictures of Mattie as Winnie the Pooh the past two nights, and tonight, I thought I would give you a close up of this cutie. Mattie's very first Halloween costume was a pumpkin. Mattie wasn't a fan of anything that constricted his movement or was itchy. So his pumpkin costume was basically orange sweatpants and an orange sweat top. The top had a lovely pumpkin embroidered on it. I remember each and every costume. When Mattie was one years old, he was a pumpkin for Halloween, when he was two, he was Winnie the Pooh, when he was three, he did not celebrate Halloween because he was inpatient in the hospital with sepsis, when he was four he was a calico cat (like Patches) for Halloween, when he was five he was an Air Force Pilot, and when he was six and battling cancer he was a mummy. He never made it to his seventh Halloween.

Quote of the day: Life is a series of experiences, each one of which makes us bigger, even though it is hard to realize this. For the world was built to develop character, and we must learn that the setbacks and griefs which we endure help us in our marching onward. ~ Henry Ford     

As promised, the question of the day is....................................................
Have you voted for Tricia (Mattie's nurse) today?
(Remember you can vote ONCE every 24 hours!!!)

For more information about the Johnson and Johnson Amazing Nurse Contest, please read my September 28, 2011 blog posting. Your daily vote is important and will bring Tricia closer to becoming a finalist.

Click on this link to vote for Patricia Grusholt: http://wildfireapp.com/website/6/contests/157336/voteable_entries


I started my day by going to Zumba class. Tuesdays are challenging days, despite the fact that 110 weeks have passed since Mattie's death. That may sound like a lot of time to my readers, but for us it seems like yesterday. Getting up to exercise gets me moving and out of our home. Otherwise, when working from home the tendency for me is to continue to be isolated and to block the world out. I go to zumba to exercise, but I primarily go because it is a mental health break. It forces me to interact and meet new people.

Before I headed home from class I stopped by Ann's house. She wanted to give me a special muffin she bought me. Naturally there is a story behind this muffin. When I got back from Cape Cod recently my friend, Carolyn (a fellow preschool mom, who happens to be from Massachusetts like Peter and Ann), asked me about my trip. I told her about it and then commented that I have never seen so many Dunkin Donuts in my life! I am pretty sure that in addition to the Red Sox Cult, there is a Dunkin Donuts Cult alive and well in Massachusetts. In fact, I am bold enough to say that I believe these two cults go hand in hand and support each other. I was joking with Carolyn about Dunkin Donuts coffee and donuts and asked her if there is something addictive in both items that cause people to crave more of them. Typically I am NOT a donut fan, but I do love their donuts. Carolyn told me if I liked the donuts, then I had to try this coffee cake muffin. I happened to mention this zany conversation to Ann and low and behold today I experienced a Dunkin Donuts muffin. I think what is really happening is Peter, Ann, and Carolyn are trying to get me to join this cult, and with my tendency to love sugar, I am an easy sell.

I spent the rest of the day working on Foundation items. I had a great conference call with a psychological researcher based in Philadelphia who specializes in working with children and families battling cancer. I consult with this psychologist on occasion, when I want to bounce off ideas and get feedback about some of the ideas I have for the Mattie Miracle Cancer Foundation. Since our mission is to support children and families psychologically and socially throughout their cancer diagnosis, it becomes imperative for us as an organization to understand how we can better support the researchers conducting the psychological studies, particularly studies that generate best practices and provide insights into evidence based services.

However, my two highlights for today both came from Georgetown University Hospital, where Mattie was treated. The first ray of sunshine came in electronic format. I attached the link here so you could read Georgetown's Childlife Annual Report. I was thrilled to see Mattie Miracle represented in this report. As I know Mattie would be too! Childlife at Georgetown meant a great deal to Mattie, Peter, and I. Without Linda, Mattie's Childlife Specialist, we would have been lost!

Georgetown University Hospital Childlife's Annual Report:
http://www.georgetownuniversityhospital.org/documents/ChildLife/ChildLife_AnnualReport090711.pdf

The second ray of sunshine which I am going to hold onto for quite some time came from Tim, one of the Hospital's Administrators who we have gotten to know well since Mattie died. Tim told me he was calling on behalf of the chair of the Department of Pediatrics to let me know that Mattie Miracle will be honored with a special recognition award on November 17 at the Four Seasons Hotel in Georgetown. Tim said that Georgetown is very grateful for all that we do for the Hospital, the children, and their families. Peter and I consider this a great honor and the other two women receiving a recognition award on the 17th will be Laurie Strongin (who wrote the book, Hope for Henry, which some of my readers may recall I read) and Deb Johns (who is the founder of Scout bags). So stay tuned for more information about this event. Needless to say, when I get bogged down with the notion or delusion that I am not being effective, I will stop and think about this recognition. Tim made my afternoon, and I was deeply touched that we will be allowed to say a few words about Mattie and the Foundation at this Friends and Sponsors dinner.

I would like to end tonight's posting with a message I received from my friend and colleague. Nancy wrote, "Each day that you write about Mattie and your experiences gives me pause. Last night's reference to "tiger and dragon" parents was so moving and distressing. I have walked the journey with you, my friend, mentor, colleague, and yet last night I felt a new and deeper appreciation of what Peter and you have gone through since 2008. I don't know if I can express in words what my heart felt as I read that story. I think it was another dose of reality that living for the moment is a prescription to follow. We never know what is in store for us and often times, the present looks different than what we imagined it to be. I know that Mattie brought us together for a reason. To me the reason is balance. We need to balance our pain with love, our sadness with joy, and our hearts with our minds and souls. Mattie, in his few years on this earth, has created a community that grows and reaches out to new and old participants alike. His curiosity and appreciation of the universe transcends what we as adults understand. On this Tuesday and every day to come, I wish you understanding and acceptance. I wish you strength to carry on this crusade to stamp out childhood cancer and am confident that the Foundation will be a catalyst in this arena."