Sunday, February 12, 2017

Sunday, February 12, 2017 -- Today marks the day in which Mattie has been dead for the same number of days he has been alive. 


Tonight's picture was taken in May of 2009. Four month before Mattie died. At that point in time we had no idea that Mattie had a terminal diagnosis. I recall this day as if it were yesterday. Normally I never left Mattie because whenever he was in the hospital I slept there. But the night before this photo was taken, I went home to sleep and Peter covered Mattie alone. I needed a physical and mental break. When I came back to the hospital the next day, dressed in normal clothes, Peter snapped a photo of me with Mattie. Mattie was happy I was back, as he relied on me throughout the day. To this day, I refuse to wear anything that remotely looks like or feels like a sweat shirt or pants. I wore so many of them for over a year while caring for Mattie, that to me this material symbolizes childhood cancer. 


Quote of the day: The whole world can become the enemy when you lose what you love. ~ Kristina McMorris


After today, Mattie will be gone from our lives longer than he was with us. This is a very painful reality to face as a parent. It is truly hard for me to grasp that I raised Mattie for 7 years, because now that he has been gone for 7 years, I struggle with remembering if I ever was a mom and what that feeling was even like. I struggle to remember his smile, his eyes, his laughter, his voice, and his touch.

My constant mission is TO REMEMBER! Which is why Peter and I are deeply grateful to our supporters who keep our second baby... The Mattie Miracle Cancer Foundation, alive and thriving. We learned the hard way, as we live with grief each day, that childhood cancer is NOT JUST ABOUT THE MEDICINE.

In 2009, we created this remembrance video of Mattie. It highlights photos of Mattie over his seven years. Mattie lived each day to the fullest and I assure you if Mattie was in a room.... you knew about it! Ooga Booga Mattie (which in Mattie-ese means.... I LOVE you)!

Remember Mattie Video:
https://www.youtube.com/watch?v=ziP83j9Oz90

I forgot I had a folder that featured photos from Mattie's celebration of life reception. Mattie's funeral and celebration of life reception were held on October 10, 2009, a month after he died. I needed that amount of time to plan for an event that I felt would appropriately acknowledge Mattie's life. At the reception, there was an entire room featuring Mattie's art. Art that he made while hospitalized for 14 months. Thankfully we had friends who created placards for each of the pieces and helped to display them so beautifully. Mattie was prolific while battling cancer and many of the items you see in these photos I still have on display in our home. 

Another table filled with Mattie's art. Many of these canvases are still hanging in our home. The irony is when these items were created, I am sure Mattie's art therapists never imagined they would serve as his legacy/remembrance pieces. But in essence that is exactly what they mean to me. 

There were many Lego
structures on display at the reception. This one did NOT come from a kit, but instead from Mattie's mind. Mattie's child life specialist, Linda, asked Mattie to design his ideal hospital room. Mattie created this room out of Legos. His design featured a huge hospital room which had access to an outdoor space, garden, and playground. 

This was Dr. Crazy Hair. Mattie made this statue with Peter in the clinic. We had this fellow in our living room for the longest time. Any case, this doctor had some interesting things in his pockets. In one pocket was a big oyster shell. The shell represented a big toenail that the doctor removed from a patient. Don't ask me where Mattie got his ideas from, but whenever he saw the shell he reacted to it as if it was someone's toe nail. It was a riot to watch! 

On the easel was featured the valentine's box Mattie made for me and on the board were all the valentine's inside the box that he gave me. 

At the celebration of life reception there was a balloon release for all of the children, Mattie's friends. Many of them tied a message on a white piece of paper to the balloon for Mattie. Since red was Mattie's favorite color, the balloons were red. 

In memory of Mattie..... we visited his memorial tree. We always keep a bow around the tree to reflect the current season and yesterday we added 7 butterfly ornaments and Legos to the tree in honor of Mattie's 7 years with us. I am not sure Sunny grasped what was happening, but he complied and stood by the tree as we were decorating and photographing it. 

The barren tree. It maybe leaf less, but it certainly isn't a boring tree. All sort of items hang from the tree in remembrance of Mattie..... legos, hotwheel cars, butterflies, a bird house, and wind chimes. 

This is the placard in front of the tree. This tree was dedicated to Mattie by his graduating class, class 2020. Notice the crocus we planted in the fall are beginning to bud. 

We keep a ribbon and bow wrapped around the tree throughout the year. The ribbon usually features a theme of the season. So this is our snowman bow that we just placed on the tree.