Saturday, July 1, 2023

Saturday, July 1, 2023

Tonight's picture was taken in July of 2003. Mattie was a one year old and it was his first trip to the beach! As you can tell from Mattie's face, he wasn't a happy camper. He disliked the feeling of the sand on his feet and the sound of the waves scared him. This was our one trip to the beach during that entire week long vacation. That did not stop us though, for two more years after this visit, we brought Mattie back to the Outer Banks. By the second year, Mattie began to appreciate all the fun one could have on the beach, particularly for him..... building and creating!

Quote of the day: I like to use the hard times in the past to motivate me today. ~  Dwayne Johnson

While on a conference call last week with a social worker from Kentucky, she told me about a cancer scam that was perpetrated on innocent people for 7 years. The name given to this particular scam is Scamanda. A play on the word scam and Amanda, the name of the fraudulent cancer patient. 

The reason the social worker told me about this scam was because Mattie Miracle received a request for money from a mom, whose child supposedly had cancer. We are very eager to support children with cancer through our M&M Wishes program. To date we have supported 12 children. So I have seen several applications and received many letters from hospitals confirming the diagnoses and treatment plans of our awardees. However, this most recent application from Kentucky caught my attention. There were many red flags to me in both the application, and in my emails with the mom and social worker. In fact I would say it was the social worker which truly caused me to pursue this issue and contact the professional I know at the treating hospital in Kentucky. 

All I can say is THANKFULLY I did! My contact was able to look into the hospital's health records. Yes the child was seen at this hospital, but ONLY for well visits. The child has no significant disease and certainly no cancer diagnosis. In addition, the hospital has no record of the social worker I interacted with being employed at this hospital system. 

After learning this knowledge, I reached out to several of our fellow non-profit friends to let them know about this particular applicant and social worker. I wanted them to know that this would be a fraudulent request and to be on guard.

Turning to Scamanda, I posted an 8 minute video about the scam below. We think of crimes being committed by unscrupulous people. But Amanda was a mom of two children, lived in California, and was a principal of a school! Not your average looking criminal. But for 7 years, Amanda was able to con people out of money, gifts in kind, meals, and people even donated blood and plasma to her cause. Needless to say, she received over $100,000 and all that money was used for personal expenses. She took her role seriously as she wrote blogs, posted videos of her shaved head, of her supposed chemo infusions, and truly prayed on the emotions of people for years. 

Having had a REAL childhood cancer journey, I can understand the feelings of support, the incredible generosity, kindness, love, and attention one can receive when such a tragedy strikes a family. I remember it all too well. Mattie's blog would have 1,000s of viewers each day, we received emails, text messages, cards, gifts of all kinds, daily meals for over a year, and if we needed something, within minutes we would have five of whatever we requested. Yes this can be an amazing and overwhelming feeling. In fact, this is one of the blessings I always reflect upon with Mattie's diagnosis. Through cancer, I learned about the incredible love, support, and compassion that people have within them and are willing to share. Most definitely this can be addictive and I know when Mattie died, it was an earth shattering reality for me to know that our community support for the most part died with Mattie. It isn't as uplifting to provide care and support to grieving parents. 

That said, I can't imagine cooking up a cancer journey for personal gains. Not only does this disrespect any individual and family struggling with this hateful disease, but it should be a crime to swindle people out of money for a fake cause. Amanda is serving a five year prison sentence, but I can imagine that everyone and anyone who supported her would now be leery to help others in the future. What a world we live in, but it reminds me as a Foundation leader that I need to remain vigilant. As we want the funds we raise to support actual children and teens with cancer and I am grateful that I have installed safeguards into our application process to try to avoid such scams. 

Podcast reveals woman’s fake cancer scam 

Friday, June 30, 2023

Friday, June 30, 2023

Tonight's picture was taken in June of 2007. Mattie was five years old and this was his very first roller coaster ride. We took Mattie to Dutch Wonderland in Pennsylvania and when I saw this ride, my initial reaction was OH NO! But Peter loves roller coasters and we asked Mattie if he wanted to try it! I was sure Mattie would say NO! But he surprised me. Typically Mattie had a healthy level of caution when it came to new experiences. But with this ride, he took to it like a duck to water. Not only did the first ride go well, they went on it multiple times during that visit. Ironically while I was worried about Mattie, I was watching a family on line for the ride having an argument with their son, who was a little kid. The son did not want to go on the ride and was scared. The parents were making fun of the child and insisted he had to go on the ride. How I did not throttle those parents that day, I have no idea. But nonetheless I did say something, as I don't think kids should be forced to do an activity they aren't ready for. 

Quote of the day: Like tiny seeds with potent power to push through tough ground and become mighty trees, we hold innate reserves of unimaginable strength. We are resilient. ~ Catherine DeVrye

It was another early morning here! I have never been a morning person, but since my parents have moved in, I have yet to sleep past 7am. In fact, a 7am start would be sleeping in. I got my dad off to his memory care center and then I promised to take my mom to the mall and out to lunch. I can see that my mom truly doesn't feel secure walking without holding my hand. She manages at home, but if we are outside the house, she holds on. My mom has developed a very strange way of walking. It is hard to describe, but I notice when I am out in public, people stare at my mom. I guess I have gotten used to her posture, her frail and thin state, and her awkward gait, as she walks with her feet spread a part. Which I am sure is a result of her balance issues. 

When my mom moved in with me, she was 90 pounds. She was extremely frail, hunched over, and her head was tipped to the left. She had no idea that she did not hold her head upright and even worse, NO ONE else told her! I had to confront the issue head on, as well as the issue regarding her weight. My dad's caregivers in Los Angeles told me my mom used to measure out only 1/4 cup of cereal to eat in the morning. Now that my mom is living with me, I portion out her food and she now eats at least two full meals a day. Thankfully she is gaining weight because being emaciated is problematic. 

Peter is now home from Chicago and tonight is the FIRST night we are going out to dinner without my parents in tow. I made the decision that it has to happen and I can't have any guilt about this decision. I need the time to eat like a normal human being, without managing needs, problems and trips to the bathroom. I also welcome the opportunity to talk with Peter without constant interruptions. In fact, just like when Mattie had cancer, the primary way Peter and I communicate now is through text messages. Otherwise, we can't have a dialogue without commentary and distractions. I realize our current lifestyle requires some change, and this week I already made the choice to have my dad stay longer at the memory care center, I decided my parents can stay home while Peter and I have a moment to ourselves, and I am also considering other options in my head. But the point is, I am actively trying to make a change. Which I assure you is hard, given the circus show I balance at any given moment in the day. 

Thursday, June 29, 2023

Thursday, June 29, 2023

Tonight's picture was taken in June of 2007. Mattie was five years old. That weekend, we took Mattie to Dutch Wonderland in Pennsylvania. This was his first roller coaster ride. I wasn't sure Mattie was going to like it, particularly because I have NEVER been on a roller coaster, and I am just fine with that! They scare me, as I don't do well with motion. Fortunately Peter does, and what I learned that day was Mattie LOVED roller coasters. I can't tell you how many times he went on it. He loved the thrill, the movement, and doing an activity with his dad. I was just happy to be on the ground and to photograph that special moment in time. 

Quote of the day: The friend in my adversity I shall always cherish most. I can better trust those who helped to relieve the gloom of my dark hours than those who are so ready to enjoy with me the sunshine of my prosperity. ~ Ulysses S. Grant

You know when you just had about enough?! Well this morning I reached my maximum in the overload department. I was juggling both of my parents, my dad's physical therapist, and the artist who is working on painting landscapes of our home. In the midst of this, chaos ensued starting at 7:30am in our cul de sac. 

Literally at one point trucks had blocked access in or out of our driveway. I was directing cars up and down our driveway, and at one point, I moved my car into the street and had my dad's physical therapist park in the garage. While I was walking in the street from my car, I interacted with one of the crew members on site at my neighbor's house. It wasn't one of my finest hours as I told him I have chaos inside my house and now thanks to him and his crew, I have total chaos outside and all around my house. Some days I can manage all the trucks better than others, but when I have people coming over to either help my parents or service our house, I have no patience what so ever. No patience because what I balance on any given day is already the impossible.

Wednesday, June 28, 2023

Wednesday, June 28, 2023

Tonight's picture was taken in June of 2007. We were in Pennsylvania that weekend and while driving around, we noticed this round rainbow thing in the middle of a field. Literally there wasn't a soul around! We weren't looking for this, we just saw it and we were intrigued. So we parked the car and went out to inspect it! It turned out to be an in-ground trampoline. Peter and Mattie had a great time running around and jumping! It was such a wonderful stop and completely unplanned! Somehow the spontaneous nature of this makes it very memorable to me. 

Quote of the day: Hope is the thing with feathers that perches in the soul – and sings the tunes without the words – and never stops at all. ~ Emily Dickinson

When my paternal uncle died, I got his poster of the Creature of the Black Lagoon. My uncle wanted me to have it, as he was involved in the 1982 TV production. In addition, if you look closely you will see an X on one of the round buildings (Marina City). This is where my uncle used to live. 

This morning, Peter sent me several photos from his trip to Chicago. His hotel room looks right onto Marina City. I have never visited Chicago, I have only been through O'Hare Airport. But the photos Peter sent me made me pause, as the city photographs beautifully. Though I haven't seen Marina City in person, it was wonderful to receive these photos. It would have made my uncle smile. 

As Peter was up early and exercising, he captured the sunrising over the marina. A sight Mattie would have appreciated. 

It is funny, two friends and contributors to Mattie Miracle wrote to me this week and asked how I liked our trip to Portland, Oregon. I literally had to pause because I had no idea what they were talking about. Then I realized, Peter must have posted photos from his business trip on Facebook. People naturally assumed that we were traveling together, as this is something we used to do in the past. 

I would have to say that caregiving for a loved one or in my case, two, is very socially isolating. Since I have experienced intense caregiving for a child and now for my parents, I am having all sorts of revelations. 

Today was an absolute whirlwind, because I had to take my dad to his memory care center and herd my mom out of the house in order to get to her salon appointment in the city on time. Though I got up at 6am, I still got to the salon late. Every aspect of my life is stressed. This is what I literally did from 6am until I left the house at 9:40am:

• got up, 
• fed Indie, 
• gave Sunny his chemo, pills, and food, 
• got myself showered and dressed, 
• then went downstairs to make an afternoon snack for my mom, as well as made breakfast, 
• then cleaned out Indie's litter box 
• vacuumed on the first floor, cleaned kitchen counters, and mopped the tiles on the first floor
• went back upstairs and woke up my dad
• made my parent's bed
• got my dad in the shower, then got him dressed (which is a production, as he provides no help in the process), and downstairs for breakfast
• threw out trash and started laundry
• while trying to eat my own breakfast, my dad had to go to the bathroom. Another production,
• cleaned up breakfast dishes
• got my parents into the car

In the midst of driving around, my mom constantly mentions that she misses driving and wants to drive. Yesterday she suggested that she drive my dad to appointments. If you watched my mom walk or reason through certain things, you would understand immediately why I took her driving privileges away. I feel strongly about this as I have a responsibility to keep her safe as well as the public. Though I wish she could drive, entertain herself, and be independent. Those days are long gone. I notice my mom NO LONGER reads books either. She won't admit it, but I know her memory issues make it difficult to  track a chapter book!  If my mom isn't pining about driving, then she is upset she can't bicycle ride. She wants a bicycle. Again, when she surfaced this today, I told her she needs to master the art of walking first. I have discussed this with her physical therapist, and she agrees, NO bicycle riding! 

So in addition to intense tasks, there is also a deep and wearing emotional toll to caregiving for two people with dementia. I serve so many roles for them and one of them requires me saying NO, to stop and question their decisions, and of course with my mom this triggers an immediate argument. Though Mattie had cancer and we were living through that hellish journey, in many ways, there were aspects of Mattie's care that were easier to cope with than what I am facing now. I think that speaks volumes about my current situation. 

Tuesday, June 27, 2023

Tuesday, June 27, 2023 -- Mattie died 717 weeks ago today.

Tonight's picture was taken in June of 2007. Mattie was five years old! That weekend we took him to Pennsylvania to have an adventure at Dutch Wonderland. At the hotel, the chef took a liking to Mattie. The chef enjoyed watching Mattie eat waffles each morning. Basically the chef prepared the batter, but then guests got to pour it into the waffle maker themselves. Of course Mattie LOVED that process! Before leaving the dining room that day, the chef dawned this hat on Mattie. Mattie was very proud of his chef's hat and that weekend away, with just the three of us, is one that I will always remember and cherish. 

Quote of the day: Persistence and resilience only come from having been given the chance to work through difficult problems. ~ Gever Tulley

Yesterday I made the decision to contact my dad's memory care center to see if he could attend today! That means that this week, my dad will be going to the center four days, instead of three. At first I felt guilty about my request, but then I dropped that feeling quickly, because I came to the realization that I needed a break. I made the right decision! In addition, instead of my dad attending the program for only four hours today (which is what he usually does), I did not pick him up until after 4pm. So that meant he was at the center six hours today. Ironically he did not notice, which is no surprise, as he has no concept of time. 

I had a conference call this morning about a national research project Mattie Miracle is involved with, as I helped to secure a $115,000 grant to study the implementation of the Psychosocial Standards of Care. I wanted to be able to participate in this call without worrying about my dad and his needs. The call was only an hour long, but being able to focus on something other than caregiving was a glorious feeling. Believe it or not, in the midst of my mountain of chores and tasks, I can still think about Mattie Miracle. Over the last few weeks, I have developed the concept of a new implementation award for clinicians and researchers. Toward the end of today's conference call, I strategized the next steps on making this a reality. For me, I celebrate the little things because truthfully the fact that I can still run the Foundation, is a Mattie Miracle in and of itself. 

Without my dad in tow today, I was able to get many things done, as well as take my mom out for tea. We got caught in a deluge of rain, but honestly today my mom and I felt much more relaxed. Peter has been telling me to leave my dad longer at the memory care center. I have been hesitant because I am always worried about my dad. But I listened to Peter, and finally absorbed what he has been saying to me. It was a great decision and it was a good learning lesson for me today. 

Monday, June 26, 2023

Monday, June 26, 2023

Tonight's picture was taken in June of 2007. Mattie was five years old. That weekend, we took Mattie to Dutch Wonderland in Pennsylvania. It is a theme park geared to preschoolers and young children. Along our journey, we toured Amish country and dined at the well known Plain & Fancy restaurant. The restaurant had a barn attached to it and it was perfect place for little ones to run around in the hay! Of course no trip was complete for me without plenty of photos. All I can say is, thank goodness I never traveled anywhere without my camera! Of course at the time it would never have dawned on me that photos would be the only things left I had of Mattie. Back then, I am sure I snapped photos with the thinking that Mattie would love having these memories some day. 

Quote of the day: It’s your reaction to adversity, not adversity itself that determines how your life’s story will develop. ~ Dieter F. Uchtdorf

My morning started off with this photo! My friend Christine emailed it to me. I can't tell you how much this perked me up. Christine and I became friends when Mattie was in kindergarten. Mattie and her son, Campbell, were "best friends." Our boys spent a lot of time together and through their bond, we became connected and developed a friendship. Christine was an integral part of Team Mattie and when our Foundation had a live Walk event, Christine managed our registration tent. Which is a big job and not for the meek. Christine knows how much I love sunflowers and how they symbolize compassion, support, and community. I can't tell you how many sunflowers I received when Mattie was in treatment. Every time we came home from the hospital, I was greeted with these happy yellow flower faces.  

Peter is traveling again this week. Last week was Portland, Oregon, this week is Chicago. It was another busy day for me, and somehow I have strained my back. I can't turn to the left or bend down. It makes caregiving truly challenging. The irony is I did not hurt myself from my daily routine, but from sitting too much by the computer doing Foundation work. May is fundraising season for us, and when not working with my parents, I was glued to the computer. The pain is intense and I am hoping within a few days, the pain is more manageable.

The Foundation's June e-newsletter went out to supporters today. In the newsletter, I highlighted the Walk 2023 video that I created last week. I was determined to make sure a video was created! Check it out......

On Saturday, I bought some beautiful tomatoes at the farmer's market. So I took the time tonight to prepare homemade tomato sauce, which I will use later this week. I started by caramelizing onions and garlic. 

I blanched five large tomatoes. Honestly I find store bought tomatoes have NO taste, so I can only do this when I can pick fresh tomatoes. 

After going in a boiling water bath for a minute, I pulled the tomatoes and put them in a bath of cold water. I love how the easily the skins come right over the tomatoes! 

The cooking process is underway!

I threw some basil and oregano, from our garden, into the the pot! I will let this simmer for several hours and boil down. We shall see how this turns out!

Sunday, June 25, 2023

Sunday, June 25, 2023

Tonight's picture was taken in May of 2006. That Memorial Day weekend, we took Mattie to Sesame Street Place in Pennsylvania. Mattie had an amazing time! He and Peter went on every ride that was possible. I was so impressed that Mattie went down this huge water slide with Peter, because just a few years prior to this, Mattie was deathly afraid of slides of all kinds and water. But we kept at it, introducing him slowly to slides and water, and eventually he LOVED them. 

Quote of the day: When everything seems to be going against you, remember that the airplane takes off against the wind, not with it. ~ Henry Ford

On Peter's walk this morning, he was greeted by deer. These are the creatures I absolutely love seeing since we moved to Virginia. 

In comparison to the above photo, we found this in our backyard today! SORRY, I am NOT a snake fan. I don't care if this Black Snake isn't venomous. I think snakes are creepy and ever since I was a kid, they terrify me!

The highlight of the day was we had Kim Richards over to begin sketching concepts for the paintings she will be doing of our house. Kim is a plein air painter and I fell in love with her work when I met her at the Vale Arts Show last year. We have a two story wall in our family room, and honestly none of us could agree about what should be displayed on this wall. 

When I thought of the idea to ask Kim to create landscapes of our house, everyone agreed. This will be a process in the making, and today was day 1 on sketching and creating. I have asked Kim to include Sunny in one of the landscape paintings. Sunny was intrigued by Kim's presence and ironically stayed close to her. 

I snapped a photo of Kim and you can see how close Sunny was.... and a few times he even went up to her and sniffed her paints. He is quite a pup!!!