Tonight's picture was taken in March of 2003. Mattie was 11 months old and this was his first trip to Los Angeles. This was the house I lived in while going to high school. It was a special feeling to share my experiences with Mattie and how he loved California. Mattie was all about being outside, and Southern California's weather is ideal. As you could see Mattie was outside roaming around in his "tot wheels" in March! When I look at this photo, I would never have guessed how my life was going to change. Mattie looked like the picture of health and my dad was cognitively intact and a vibrant part of our family. The problem with cancer and dementia is they cloud my memories.... as it takes a great deal of work on my part to recall Mattie and my dad when they were well!
Quote of the day: When her pain is fresh and new, let her have it. Don’t try to take it away. Forgive yourself for not having that power. Grief and pain are like joy and peace; they are not things we should try to snatch from each other. They’re sacred. they are part of each person’s journey. All we can do is offer relief from this fear: I am all alone. That’s the one fear you can alleviate. ~ Glennon Doyle Melton
By 10am this morning, I felt like the day should have been over. I got up at 6:15am, because it takes much longer to get my dad ready in the morning and I had a conference call for the Foundation at 11am. This morning was a disaster. With late stage dementia, one can lose continence to bowels. Given my dad's issues with irritable bowel syndrome, his issues are magnified by ten. Every morning, the clean up of my dad, the shower, and the floor could make the average person sick to their stomach or cry. The shower looks like a crime scene every morning, and I can't tell you the scrubbing and cleaning I do each day! My dad has NO IDEA why I get upset, as to him his behaviors are normal.
When I hopped on the call at 11am, I truly had to mentally re-group as I was meeting professionals from the Cancer Action Coalition of Virginia. Several years ago Mattie Miracle worked with the Coalition to add psychosocial language and the Psychosocial Standards of Care to the plan. If you want to see what I am talking about, visit the Virginia Cancer Plan and download the plan look at page 56. Today, I had the opportunity to chat with the new executive director and program coordinator for the Coalition. As I introduced them to Mattie Miracle and our work, I could tell it left them in awe. Sometimes it helps me to see Mattie Miracle through new eyes! In all reality what my small non-profit has been able to accomplish is inspiring, especially when you factor into the equation that we created the Foundation in memory of Mattie. Whatever work I had done with the Foundation, doesn't directly benefit Mattie. But my hope has always been to carry Mattie's legacy forward and through the countless lessons learned from Mattie, I try to help other children and families like mine. When I take a pause from my daily stressors and focus on the Foundation, all I can say is I wear my Foundation hat with pride. NO ONE can take away these accomplishments. I have worked hard and diligently for 17 years and counting and I AM passionate about Mattie's memory and legacy.
After this energizing call, I felt like I could attack a large tree limb that had fallen in the backyard. I was going to leave it for Steve, my outdoor guru, but today, I got a saw and went at it. Some people have to scream, some people have to punch something, I just need to be outside and working. I can't tell you how therapeutic it was to saw this tree limb. I went out it and cut it in three sections and brought it to the curb. Another thing I can do alone..... and the list is growing! The only thing my divorce has taught me is that I am much stronger than I ever thought and how vital it is to be self-reliant. I never want someone else managing any aspect of my life from finances to personal decisions.
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