Tuesday, March 10, 2026

Tuesday, March 10, 2026 -- Mattie died 836 weeks ago today.

Tonight's picture was taken in March of  2004. Mattie was almost two years old! To me this photo says it all, as I was trying to take a photo of Mattie and this was not what he had in mind. Mattie wanted to go outside and I was slowing him down. My need to snap photos was not part of his plan. So you can see Mattie got himself outside to our deck and was ready to close the door on me, to prevent the photo, but more importantly to hurry me along. Somehow I captured the photo and his impish smile! 

Quote of the day: It’s not the honors and the prizes and the fancy outsides of life which ultimately nourish our souls. It’s the knowing that we can be trusted, that we never have to fear the truth, that the bedrock of our very being is good stuff. ~ Fred Rogers

It was another winner of a morning. Not very long ago, these types of mornings occurred maybe once or twice a week. Now they happen every single morning. The IBS cleanups, while showering and dressing my dad, are overwhelming and frustrating. My dad's cognitive decline is significant. I can say something to him and two seconds later, he doesn't remember what I just said. My dad has lost all memory of most things, including his long-term memory. In addition, my dad knows that I was once married, but he has no idea where my other half is, or what transpired. To my dad, my other half is just away on a trip! If I could only sign up for this portion of his memory, I'd do it in a flash! 

Once I got my parents settled this morning, I then went to my monthly task which I hate..... figuring out how I am paying bills. I spent two hours on bills today and thankfully had a quiet moment where I could actually think. In addition to bill paying, I am also focused on the Foundation's Walk Website. All I can say is THANK goodness, I designed this site a few years ago. If I had to create this from scratch now, I would jump out the window because that would require a steep learning curve. As it is, it has taken me weeks to work on sponsors and raffle items, which was crucial, in order to be able to input that into the website system. 

I finally finished the book I was gifted. The book is a memoir of a woman's relationship and unexpected divorce after 20 years of marriage. In one of her chapters she reflects on what to do with photos, videos, items, and her wedding album. I am sure if you ask divorced women what they have done with these once cherished items, the answer maybe different. But not unlike the author of the book I was reading, I would NEVER throw these items out. Why? Because you can rob me of my present and future, but there is NO WAY you are going to wipe away my past. I was in a relationship for 35 years, had a child, went through a childhood cancer journey, built a Foundation in Mattie's memory and experienced a medical trauma and grief journey together. These are the facts... the photos don't lie. They are visual reminders of the LOVE, SUPPORT, and RESPECT that surrounded those 35 years. 

It was 70 degrees today! Absolutely glorious! I can always tell when it is warm outside.... because Indie insists on outdoor time. I wish I could just let her out, like I would with Sunny. But unlike Sunny, Indie can't be trusted. She needs constant supervision, because one bird sighting and she would will running all over the place and migrating away from our backyard. The only positive of Indie's desire to be outside, is she forces me to go outside with her and to sit still for a moment!

Monday, March 9, 2026

Monday, March 9, 2026

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.  

Sunday, March 8, 2026

Sunday, March 8, 2026

Tonight's picture was taken in March of 2003. Mattie was 11 months old. It was his first airplane trip, and not a short flight either, as we took him to Los Angeles. I had a conference to attend there and since I never parted from Mattie, he came with us and had a ball at my parent's house. I remember taking this photo in the living room. I bent down to snap a photo and Mattie opened his arms to grab me and the camera! It is a priceless photo. When I look at this photo, it brings me back to when I was in high school. As this is the house I lived in then and as I look at my mom's furniture and rug, I see that they have now become mine. That may not sound surprising as children inherit their parents things, but I guess back then when I took this photo, I couldn't see the stage that I would be faced with now.... a caregiver to my parents and divorced. 

Quote of the day: Learn to get in touch with the silence within yourself, and know that everything in life has purpose. There are no mistakes, no coincidences, all events are blessings given to us to learn from. ~ Elisabeth Kübler-Ross

Typically I love Kubler-Ross quotes, but this one came across my page today and all I can say is "really Elisabeth?" Are all events blessings? Must we be bestowed such blessings in order to learn? She was not the only one with this philosophy. So many people believe that all things happen for a reason and we learn what we are made of during such challenging times. There maybe some truth to this fact, but I guess my question is must be learn and grow only as a result of turmoil, crisis, trauma, and grief? My answer is no! I also believe that such trite quotes are generated not to make the traumatized feel better, but instead to provide a platitude for others to deliver to people facing the aftermath of their crises. 

Sunday is usually the day we go out for brunch. A day that I don't have to cook a big meal at home. In addition to caregiving, I am cooking and cleaning around the clock on a daily basis. It is tiring. What should have been a positive experience today, was a disaster. First off, while driving to the restaurant, I could see that my dad was off. He looked and acted out of it. Of course if you ask him, he can't report out anything! NOTHING! I have to be Columbo 24/7! When we got to the restaurant, over the course of the meal, my dad went through three packets of tissues. Mind you I travel with tissues and garbage bags to collect his tissues! This is a daily problem, not unique to today! But today, his nose was running non-stop. I gave him Tylenol while we were eating and while juggling my dad, the restaurant got everything my mom and I ordered wrong! I was constantly sending things back and complaining. While I was dealing with managers coming to the table to chat about the problems, my dad was eating non-stop. So by the time we got our food, he was done, and then he proceeds to stare at us to finish. How I didn't jump out the window I do not know. But one of the managers came over to me because he saw all that I was dealing with, with my parents and wrong orders, that he comped our meal and then gave me a big hug. This kindness doesn't go unnoticed. This is the same manager that tells me often that he sees everything that I do for my parents, and that I am a unique and strong individual. 

Any case, by the time I got home, I was strung out. In fact, I am still agitated tonight from today and now I have to face the fact that my dad could be sick once again. What would be a minor illness for you and me, is hospital worthy for him. For now he is getting Tylenol around the clock and I should know in a day or so which direction this is going. God give me strength.