Tuesday, May 5, 2025

Tuesday, May 5, 2026 --Mattie died 844 weeks ago today. 

Tonight's picture was taken in May of 2009, at the Mattie March. Team Mattie hosted this event at Mattie's school which pulled our communities together, to support Mattie, and to raise funds to help with Mattie's treatment and care. Pictured with Mattie is Bob, the Magic Man. Bob was Mattie's head of school. Bob learned to art of magic from his father. Bob visited Mattie at the hospital and at our home several times a month to teach Mattie magic. Mattie loved it and was good at it, because it required fine motor skills. These were skills unaffected by his cancer treatment. As Mattie began to socially retreat, magic gave him the ability to connect with his care team and to do something that made him feel good about himself. This particular photo was taken at the magic show that was performed at the Mattie March in 2009. This was one of Mattie's favorite tricks, maybe because it had a funny name that only a 6 year old could appreciate.... "the peanut butter booger trick!" After Mattie died, Bob renamed the trick.... "the Mattie Brown." When Mattie Miracle hosted its in-person awareness Walks, Bob always performed a magic show in Mattie's honor! 

Quote of the day: Go within every day and find the inner strength so that the world will not blow your candle out. ~ Katherine Dunham

I was running around this morning doing all sorts of chores and tasks. While going up and down the stairs, I happened to look out the big Palladian window and saw a dead bird sitting on top of the portico roof. It was a baby bird that clearly did not make it. I naturally wasn't going to leave the bird up there. When I told my mom about the bird, her response was.... you need to hire someone to climb up there and remove the bird. I literally said to her.... NO! I am NOT asking anyone for help! I spent my entire married life relying on someone. Now if I am capable of finding a solution, then I will address it myself. 

I literally brought a ladder out front and had a very long garden stake in tow. I got up on the ladder and naturally I couldn't reach to the top of the portico. So I reach up with the long garden stake and used it to sweep off the roof. Sure enough, I swept the bird right off. I am saddened to see that this baby bird did not make it, but I believe that all animals go straight to heaven. So I am hoping this bird is living the life it was meant to be up there. 

My dad's nurse came back today and we are continuing to monitor my dad's sores. I am absolutely disgusted with Medicare. Medicare doesn't provide an adequate supply of wound care materials. Instead, families are forced to purchase them on their own. Thankfully I can do this for my parents, but what happens to older adults who are unable to manage this process? I know the answer..... they are out of luck! If I relied on Medicare's wound care supply, I would be lucky if I could change my dad's bandages twice a week. Which is ridiculous considering that with my dad's incontinence, some days I have to change the bandages three or more times! 

On another note, the Foundation's awareness Walk is May 17th. Please consider checking out my Mattie Moon's fundraising page. Also check out our on-line raffle too! The Walk is a vital fundraising event for us, as it helps us raise funds to support our psychosocial programs and initiatives that assist children with cancer. I thank all my friends and supporters for helping me keep Mattie's memory and legacy alive. I carry this important role alone now, which is why I am so grateful to all of you!