Tonight's picture was taken in May of 2009. Mattie was home between treatments and sitting on our couch. Sitting on top of Mattie was a cat stuffed animal. However, this stuffed animal was very different from most. First of all it looked real and second the fur on it almost felt like real cat fur. Mattie got this gray cat in the hospital gift store. In fact he eyed it and an orange cat in the gift store during each hospital admission. Each time we passed the store, he begged for the cat. It was hard to say no to a child with cancer, and because of the amount of things coming before Mattie each day while he was battling cancer, it was hard to set parental boundaries. Mattie earned this gray cat and the orange cat however by doing physical therapy. He needed incentives and now that I know in hindsight that his cancer was taking over his body, perhaps I shouldn't have pushed him so hard to do physical therapy. But I did not know that piece of information and at the time I was motivated to help Mattie rehabilitate. These cats remain in Mattie's room today.
Quote of the day: Let us be grateful to people who make us happy; they are the charming gardeners who make our souls blossom. ~ Marcel Proust
Based on tonight's quote, I can say that there were various people who made me happy today. Perhaps it wasn't my personal happiness that makes me take notice as much as I felt people understood my concerns and truly tried hard to help the Foundation secure permits for our Walk on May 20, 2012. Before I tell you about the permits and my visit to Alexandria City Hall, I want to tell you about one of my doctor's offices.
As my faithful readers know, I need to take a follow up MRI in May. Actually the second week of May to be precise. For the past three weeks, I have tried getting a hold of the nurse practitioner of the oncologist I have been seeing at Georgetown. I left her two messages and she never returned my calls nor did I get an MRI script in the mail (like she did previous times). So today, I decided to call the front desk of the Lombardi Cancer Center, and try to deal with a live person directly. I was on hold for 15 minutes and then when someone answered and I told her what the issue was, we then got disconnected. I was NOT happy with this level of attention. Having experienced Mattie's hospital care, I knew today's behavior wasn't personal, it is just the system. So I then decided to call a third time to leave a message with my doctor's nurse practitioner. This time I was more forceful and specified the dates I called her and said that if she wasn't going to call me back and help me, then I was certain I could move up the chain of command and get my needs met. Needless to say she called me back within the hour. Her response was she thought I decided to go with another doctor and seek care with him rather than at Georgetown. At which point, I corrected her and asked where on earth did she get that idea?!!! All my MRIs have been at Georgetown, Mattie was treated there, and we raise money for the Hospital, so unless I directly say that "you are no longer my doctor," one can't make that assumption. Either case, that still doesn't justify her lack of follow up calls. I am entitled to consult with whatever doctor I want to about my health, and would hope that seeking various opinions wouldn't frighten a doctor from working with me. Either case, I have learned the hard way, that you have to be your own advocate and no doctor or hospital can do it better than you can. I have also come to the conclusion that adult oncology is a much different world than child oncology. I like neither world!
Now to what made me happy..... This morning I received a text message from my friend Tina. In the message she told me she read about my frustrations with City Hall on the blog and wanted to know if it would be okay to connect me with a former City Council Member she has gotten to know through her own advocacy work in the City. I never turn down help if you approach me. So Tina began working her magic and the next thing I knew, I received an email from former City Council Member, Justin Wilson (http://www.justin.net/bio). Within a matter of an hour, Justin made all sorts of things happen. First of all, he allowed me the opportunity to be heard and to express my feelings of disapproval for the multiple permits and their various fees that I would need to apply for in order to make our Walk compliant with Alexandria code. I explained that as a non-profit, asking us to pay almost $1000 in fees for multiple permits was unfair and not a good or fair way for us to spend our money. Money that people entrust me with to help children and families battling childhood cancer. Justin understood my feelings and within 30 minutes connected me with people all over the City.
One of the two key people Justin connected me with was John Catlett, the Director of the Alexandria Department of Code Administration. John was literally at the airport going on business travel when he received this email from Justin. However, John wrote back to me directly and told me exactly who I needed to work with in his office and assured me that the process would be streamlined for me. John contacted all his people and by the time I walked into the Permit Center door, several people knew I was coming. I assure you this made a huge difference to have directors overseeing the Foundation's applications today. You need to understand that Mattie's school recently had to file permit applications for a spring event. So I consulted with the mom who handled the permit application process on Friday. By the time she and I finished talking, I deduced I needed around 8 permit applications. I knew enough from speaking to this mom to realize that if someone was willing from City Council to connect me to the right people who make decisions, then I would be a fool not to follow through.
After two hours visiting City Hall, I left having completed TWO applications, NOT 8! That is because I had the right oversight today and the directors working in the office were able to guide the staff appropriately and consolidate what could have been a nightmare of a process. At the end of the day, instead of spending $1000, the Foundation spent a total of $293. Big difference!
The second person I was introduced today to by email was Bob Custard, the Environmental Health Manager, who works for the Department of Health in Alexandria. The health department application and process is much more straight forward and all their documents are on-line. So I came to the office with my paper work already complete. But I had a ton of questions especially as it related to homemade products. In the past, we have had a bake sale at our Walk, however, the City will not allowed home made items to be sold at a public event. So this changes the nature of our bake sale this year. When it is all said and done, on the day of the event, three inspectors will check out our site and event before it can open. One is the fire marshal, the second is a building inspector who will check the safety of the moon bounce and rock wall, and third is a health inspector to inspect the food and food areas.
I came home today and I wrote myself detailed notes so that I have a better understanding of what I am doing next year. However, I could never have accomplished today's adventure without Tina, Justin, John, and Bob. To them I am very thankful and grateful. They saved me hours of work and the Foundation money! Also on this journey to City Hall, I was accompanied by Johnny. Johnny works at Mattie's school, and he happens to be the husband of Mattie's technology teacher, Mary. Mattie loved Mary and Mary actually visited Mattie every week while he was in the hospital and gave him a technology lesson. When Mattie did not feel like learning, Mary played with him. Mary and Johnny are very kind, compassion, and caring individuals. Without Johnny, we wouldn't be able to have a successful walk. He is my logistic person extraordinaire, who can literally get anything accomplished. He was the person who gave me a heads up about the permit compliance and he also works behind the scenes at every Walk to make sure everything goes well.
So today, I pause and am thankful for knowing people who are moved by the memory of my son, so much so, that they would take the time out of their day to help me and to help the Foundation. People like this do not go unnoticed for they have a special place in my heart and their kind gestures are priceless.