Saturday, October 8, 2022

Saturday, October 8, 2022

Tonight's picture was taken in October of 2003. Mattie was a year and a half old and I captured Mattie in motion. Mattie was the ultimate multi-tasker. I had a Baby Einstein video playing, but Mattie never really watched anything completely. He was always doing something. In this particular case, he was taking out every video cassette in the TV cabinet and then began to stack and organize them. Sometimes he just made me laugh. For Mattie some of the best toys were found or every day objects. 

Quote of the day: I love you every day. And now I will miss you every day. ~ Mitch Albom

Peter snapped this photo of us at the kitchen table on Friday night. Peter's parents have visited with us since Thursday. I have tried to cook nice dinners each night. Last night's meal was grilled flank steak, ginger carrots, and string beans with lemon and mint. 

Though both sets of parents have slowed down significantly, I am trying to plan things while we are altogether, just to have diversions and get out of the house. Today we went to the Farmer's Market and the garden center. I wanted to introduce my in-laws to the farmers we interact with each week. I am not sure they enjoyed the experience as much as me. 

By the time I got home and put away the market stuff, we decided to leave my mom, dad, and Peter's dad at home, while the rest of us went to the garden center. My parents were out cold while we were gone, and I knew they couldn't handle another outing before dinner. They require a lot of down time and sleep throughout the day. 

At the garden center, I wanted to buy small pumpkins for the front of our house and a mum and three pumpkins for my neighbor. My neighbor turned 80 and I wanted them to know that we do appreciate them! 

This evening, we took everyone out to Clyde's for dinner. I thought this would be special, as we wanted to introduce Peter's parents to Cheryl, one of our favorite servers. When we sat down, Cheryl told me that the manager wanted us to vacate the table by 6pm, because they were having a homecoming party who  needed the space. Naturally if you know me, you will know this did not sit well! I asked Cheryl to send the manager over. This is a place we frequent once or twice a week. As a regular, I expect better treatment! The manager came over and started quoting me standard operating procedures. I told him that I hear him, but that there needs to be some accommodations or leeway for regular customers. We should take priority over the once a year homecoming students! He got me, and a few minutes later came back and told me he worked it out and we could stay for as long as we wanted. Cheryl couldn't believe I was able to get that accomplished!

When I got home from dinner, I was a little upset about a few things. I spent a few minutes in our bedroom, and Miss Indie came to join me. 

I end tonight's posting with a photo of Mattie Moon over GW Bridge in New York. A friend sent me this photo and I must say it came at a very good time! 

Friday, October 7, 2022

Friday, October 7, 2022

Tonight's picture was taken in October of 2003. I thought 2004 was our first time taking Mattie to a Fall Festival, but I was wrong. We started early, in 2003. Mattie was a year and a half old. Ironically on our journey today, we passed this festival location in Leesburg. Back then Mattie had a close encounter with a goat and other farm animals. Which was how I nick named him "farmer Brown."

Quote of the day: If our condition were truly happy, we would not seek diversion from it in order to make ourselves happy. ~ Blaise Pascal

This morning I had a conference call, which I was fortunate enough to make happen. My dad went to his memory care program and Peter and I took my mom and his parents to Leesburg, VA, to visit Oatlands! This may sound like an everyday occurrence, but I haven't done anything other than intense caregiving for ten months straight. This was my first time doing something different, but of course I wasn't free to truly absorb what was around me because I was responsible for my mom and her safety. 

This is Oatlands Historic House and Gardens. It is an estate located in Leesburg, Virginia. Oatlands is operated by the National Trust for Historic Preservation and is listed on the National Register of Historic Places as a National Historic Landmark. The Oatlands property is composed of the main mansion and 415 acres of farmland and gardens. The house is judged one of the finest Federal period country estate houses in the nation. On the property, in addition to the Mansion, are a number of outbuildings, including the Carriage House, Bachelor's Cottage, several barns and farm buildings, and a greenhouse, built in 1810, said to be the oldest standing greenhouse in the South.

Oatlands was established by George Carter, a great-grandson of Robert "King" Carter, in 1798 on 3,408 acres of farmland. It started as a wheat farm, but expanded to include other grains, sheep, a gristmill and a saw mill, and a vineyard. In 1804, Carter began construction of a Federal mansion, which he expanded in the 1820s and 1830s. A terraced garden and numerous outbuildings were added during this time.

George Carter's widow, Elizabeth Grayson Lewis Carter, inherited the property after her husband's death in 1846. In 1861, fearing that a battle between Union and Confederate forces was imminent nearby, Elizabeth Carter fled to another of her properties, Bellefield. The Carters' eldest son, George Carter II, reopened the mansion with his wife, Katherine Powell Carter, in 1863 and inherited the property when his mother died in 1887.

In 1897 the Carter family sold the mansion with 60 acres  for $10,000 to Stilson Hutchins, founder of The Washington Post newspaper, who never lived on the property.

Hutchins sold Oatlands in 1903 to William Corcoran Eustis and Edith Livingston Morton Eustis. Mrs. Eustis restored the gardens from neglect, adding boxwood-lined parterres to the terraces, statuary, a rose garden, a bowling green, and a reflecting pool. 

The house was also upgraded with modern amenities including indoor plumbing, heating and gas lighting, along with pine floors placed over the original Carter flooring, an elevator, and a custom first floor bathroom for childhood friend, Franklin D. Roosevelt.

Due to their prominent political stance in Washington, D.C., the Eustises had many famous friends including General George C. Marshall, Henry Cabot Lodge, President Harry S. Truman and Franklin and Eleanor Roosevelt.

After Mrs. Eustis' death in 1964, her daughters, Margaret and Anne, donated the mansion, furnishings, and estate grounds to Margaret's husband, David E. Finley, founder of the National Trust for Historic Preservation.

Look closely! I spotted this as soon as I walked in the room. Do you see the two horse hoofs? These were memorials to the Eustis' favorite horses. These are the actual horse hoofs by the way, not a model or replica! Not sure I ever saw anything like this, but I understand all too well how close we can get to our animal friends. 

We had an hour long tour of the house with a docent named Laura. Peter's dad sat outside on the veranda during the tour, as he has trouble with his eyes, which makes walking around difficult. 

With regards to my mom, she had a death grip on my hands and arms the whole time. Her walking is a major, major concern for me and I notice when she is in an unfamiliar setting she is extremely anxious about moving around. 

Though I wanted to see the gardens, I did not get to do that because there was no way I could walk these paths with my mom. 

After our tour, we took everyone to Shoe's Cup and Cork restaurant for lunch. It was 77 degrees today, so we sat outside in their secret back garden. The place was filled to capacity and I am so glad I made reservations ahead of time!

This restaurant building was constructed in 1880 and was everything from a post office, car dealership, to shoe repair store. In fact, during construction from a shoe shop to a restaurant, they noticed the heel of a shoe sticking out from the rubble of a wall, with a tag that had a due date of December 31, 1928, and a repair fee of $1.00 for a new heel that seems to have been completed. Their jokes is when the rightful owner shows up with the claim tag, the storage fee, and $1, they will gladly return it. Until then, it is the centerpiece of their Café chandelier. The restaurant is known for its locally produced goods including vegetables, fruit, beer, wine, bread, and more.

Thursday, October 6, 2022

Thursday, October 6, 2022

Tonight's picture was taken in October of 2004. Mattie was two and half years old. That day, Mattie's first preschool (which he lasted at for about two months!), had a field trip to Butler's Orchard in Maryland. It was the only good thing that came out of that preschool, was being introduced to this farm. Any case, I got myself included in this outing as a chaperone. Mattie loved going out into the field, riding a hay wagon, and picking a pumpkin off the vine. It was a neat experience. Though it was a damp and rainy day, to me this is still a great photo. It was at this same location that I took the quintessential pumpkin photos years later. This is the photo that I use in any and every presentation for Mattie Miracle. 

Here is the photo in question..... my favorite pumpkin photo!

Quote of the day: Every morning I wake up to perform my one and only character. A Rising Phoenix in spite of it all. ~ Michele Bell

I have felt very overwhelmed today. I had to get the house ready for my in-laws' visit as well as get my parents up and moving. My dad had a physical therapy session at the hospital today, which required leaving the house at 10am. Which I am telling you is a feat of grand proportion! Honestly some days I just don't know how I do it. It is physically and emotionally beyond draining. 

I took my dad to his session today and left my mom in the hospital atrium, listening to the live piano music, drinking hot tea, and sitting in a comfortable chair. I did the 45 minute session with my dad and then we came back down to get my mom. When I arrived where she was sitting, I found her in tears and hysterical. I honestly did not know what was wrong. I then learned that one of her friends who she knew from New York, who then moved to California around the time they did in the 1980's died today. My mom hasn't been in touch with this friend for a while, mainly because the friend had dementia and was living in a nursing home. Dementia has a way of separating people and killing relationships. In any case, this woman's death hit my mom hard. At first I did not quite understand my mom's extreme reaction (it took my 60 minutes in the hospital atrium to calm her down). But then I tried to sit back and put two and two together. I think this friend symbolized many things for my mom and this woman's death, I believe made her reflect on happier and healthier times, as well as my mom's own future demise. My mom is not happy with the way her life turned out, and the impact of my dad's dementia on her life. 

This crying fit was a balancing act! As I was managing my mom's reaction and my dad was absolutely clueless. He knew this couple for over 50 years, yet my dad had NO recollection of his friend, much less his wife (who just died). My dad was oblivious and all he could focus on was when we were going to get up, go to the bathroom and get back to the car. He had no reaction to my mom crying and really did not understand what was going on. 

There are times I want to stand up and scream. I don't have a minute to return emails, return phone calls, or do anything. My parent's are all consuming and they have significant enough issues that require constant support. Given that my in-laws are visiting, I am trying to plan some activities, so we are not sitting around looking at each other all day. My parents and my in-laws have very different lifestyles and opinions about things, therefore, this adds another layer of stress to my already full plate. 

Wednesday, October 5, 2022

Wednesday, October 5, 2022

Tonight's picture was taken in October of 2004. Mattie was two and a half years old and was at his first Fall Festival. I honestly never went to such an event as a kid, so for me it was just as eye opening as it was for Mattie. At the festival, there were all sorts of cut out Halloween shapes and Peter snapped a photo of us in front of this pumpkin. Mattie loved the color orange and all things made of pumpkin. It is ironic because prior to having Mattie, I disliked pumpkin. But because he was so enamored with it, I grew to love it too. 

Quote of the day: The day the roles reverse is foreign. It’s a clumsy dance of love and responsibility, not wanting to cross any lines of respect. It’s honoring this person who gave their life to you—not to mention literally gave you life—and taking their fragile body in your hands like a newborn, tending to their every need. ~ Lisa Goich-Andreadis

This morning I opened up my e-mail box and found a link sent to me from our friend, Marisa. We have known Marisa since she was a student in high school. It is hard to believe that she just got married (where does the time go?). Marisa got to know Mattie as he was battling cancer and once he died, Marisa ran our Foundation's awareness walk bake sale for 10 years. Marisa not only sent me the link, but said when she read this posting, she thought of us and Mattie Miracle. 

https://m.facebook.com/story.php?story_fbid=pfbid0gdMUDgRum32MWsZGY6MHiqQRCAng2AYTjEmvPPQhGGNuFZoTcQXPhKecgcEHiATQl&id=102099916530784&mibextid=C8kmS4

I think we live in a complex, complicated, and sometimes depressing world. Therefore, when we read positivity and hear about how others live their lives devoted to helping others, it is inspiring. This particular priest keeps a "sunshine file." I absolutely love the notion and in a way, I saved many letters and messages sent to me during Mattie's cancer journey and death. Some of these letters are very moving and touching and provided me hope when I thought life was over. 

What I love about this priest's posting are three things: 1) it is important to cherish words, feelings, and connections with others (as they are worth saving in whatever format you have them in... words, recordings, photos, etc.), 2) thinking outside one's self actually can provide its own sunshine. His example was providing a child with cancer a cabbage patch doll, and the unforgettable  Christmas gift this was for a dying child. I know that running Mattie's Foundation is what has re-connected me with the world and has provided me with a direction forward. It is through helping others that we find ourselves. I truly believe this! and 3) I wonder if being crabby and grouchy, as he highlights, is a choice? I am on the fence about this, but I do think attitude is very important. I know I have had and continue to have my own trials and tribulations, but through it all, I try to persevere, learn and grow. Do I have my off days? Absolutely, maybe off weeks! But I also know that the only thing I can control in life is my reaction to things.

Reading this short link that came to me today by e-mail perked me up. It is always lovely when someone thinks about you and equally lovely to know that the special sentiments in such a link, reminded our friend of us!

Tuesday, October 4, 2022

Tuesday, October 4, 2022 -- Mattie died 679 weeks ago today. 

Tonight's picture was taken in October of 2004. Mattie was two and half years old and this was his first Fall Festival. Mattie was intrigued and yet scared by the large hay slides. If I were him at that age, I would not have even ventured near those slides. But Mattie was much more adventuresome than me. He agreed to try it sitting on Peter's lap. That was how he went down the slide that year. In subsequent years, he did go down on his own and loved it. I of course was the family photographer, since I did not like rides or fast motion, it made sense that I stayed on the ground to capture the memories. I am so glad that I did!

Quote of the day: There is no grief like the grief that does not speak. ~ Henry Wadsworth Longfellow

Thank goodness for steroids. I am not sure how I would have managed my dad's allergic reaction without them. We have been struggling with him for a week, thanks to some bug bite that he got inside the house. His face, eyes, hands and body began to swell and last night, he looked like someone punched him in the face. By this morning, the swelling greatly improved and I am hoping in time, he stops scratching. As he gets fixated on scratching and most times lands up breaking skin and bleeding. Which of course is a whole other problem. 

My dad had physical therapy at the hospital this morning. But before I left the house I wanted to make homemade tomato soup and blackberry vinaigrette for Peter's parents, who are visiting on Thursday through Sunday. I honestly have NO IDEA how this visit will go. Needless to say, I am concerned because no one is as active as they used to be and that is a lot of days to just be sitting around looking at each other. 

Thanks to the steroids, my dad actually has more energy than usual, and had a very rigorous physical therapy session. I really love his therapist and I particularly love how inclusive she is of me in the sessions. Unlike my mom's therapist. My dad's therapist respects the fact that I am managing all of his care and therefore my observations and input are crucial. Any case, my dad is making some strides and she believes she can reassess him on Thursday, to qualify him for more therapy! Which is outstanding news!

After therapy, I took my parents out to eat. When I got home, I worked with Peter to make up beds for Peter's parents and get their space ready for Thursday. When I tell you I am doing non-stop caregiving work and constantly meeting someone's demands throughout the day, I am not kidding. 

Monday, October 3, 2022

Monday, October 3, 2022

Tonight's picture was taken in October of 2004. Mattie was two years old and we started taking him that year to Fall festivals. This particular event had a petting zoo and lots of hands on activities for children. Mattie had the opportunity to touch goats, sheep, and pigs. As you can see Mattie was tentative about the whole thing, but was definitely intrigued. 

Quote of the day: I think one’s feelings waste themselves in words; they ought all to be distilled into actions which bring results. ~ Florence Nightingale

This was my dad's back in March of 2022. He was hospitalized for a pacemaker insertion and during his week long hospital stay, nurses put pressure sore pads on his body, to prevent skin ulcers. Ironically he did not get an ulcer, but his skin reacted to the adhesive from the pads. My dad was a mess and needed to go on steroids for another week in the hospital. 

Moving forward to today! On Tuesday, my dad got an insect bite while in the house. I honestly do not know what bite him. But I remember seeing a bite with a red dot in its center, right above his left eye brow. Within hours the bite turned into the size on a chicken egg. Since Tuesday, I have been dealing with a massive break out of hives and edema. His face is so filled with fluid, it is distorted and he hardly can see out of his eyes. Last night, I noticed the hives spread to his tummy and legs. 

When I got up this morning, I called the doctor's office and made an appointment for the afternoon. I had to do this, since my mom had a morning doctor's appointment. I give myself a gold star for taking my dad in. 

I felt the Benadryl wasn't cutting it and apparently I was right. I think we were hours away from anaphylaxis in which the immune system releases a flood of chemicals that can cause you to go into shock. Though my dad's blood pressure, pulse, and oxygen levels were all normal, his lips started to swell this evening, making it hard to swallow. 

My dad was prescribed prednisone (steroids) and we now have an EpiPen for him. Epinephrine auto-injectors are devices that contain epinephrine. This medicine is used to treat severe allergic reactions called anaphylaxis. It was explained to me today that with each severe allergic reaction my dad gets, the body remembers it. Therefore the next time he gets a bite, he may react even worse than this! Can you imagine an immune system has a memory? That is what I am dealing with here. Next time I have been told to prepare for an even more severe reaction that could impact my dad's breathing and therefore I need to have an EpiPen at home and in the car. Which I now have!  

This evening, as frazzled as I am, I came home to my mom wanting to pay bills. With her, everything is a crisis and MUST be dealt with immediately. I spent another hour on her needs and finally got a chance to go through my own emails. I am SO behind on everything. Some times I want to scream and other times I have just resolved that this is my life. 

Sunday, October 2, 2022

Sunday, October 2, 2022

Tonight's picture was taken in October of 2005. Mattie was three years old and doing something he loved to do..... paint with his feet. That whole notion would NOT be up my alley, but apparently Mattie loved the sensation on his feet and the art work he could create. The beauty of Mattie was he was a naturally organized and neat kid. So if I told him not to leave the paint area and run around with paint all over his feet, he complied. When he was done with this activity, he would lift his arms up, signaling to me that he was ready for me to pick him up and bring him into the kitchen sink to clean up. 

Quote of the day: A bad headache can destroy all plans for the day. ~ Rajesh

This morning I went to wake my dad up and his face looked distorted. He was very red, swollen, and had yellowish fluid seeping from his forehead. Below his eyes were sacs of fluid, making it hard for him to keep his eyes open. I got him showered, dressed, and downstairs for breakfast. I also contacted his doctor again. I did not do any exercises with my dad today, as I immediately gave him Benadryl after breakfast and placed an ice bag over his forehead and eyes for several hours. 

My dad has very sensitive skin. He got an insect bite on his forehead on Tuesday and I have been dealing with the consequences of that all week! 

It was a rainy and depressing day. While my parents spent the day resting, I was working at my computer on a Power Point presentation that is due on Wednesday. I can't tell you how long it took me to put 25 slides together! I have never had to present on the impact of physical activity on children with cancer and how physical activity affects mental health. Mattie was an excellent case study and earlier in the week I did a literature search to see what research has been done on this topic to date. Ironically NOT much! There is a lot of research about the benefits of exercise for adults with cancer, but little for children, and even less on the psychosocial outcome of physical activity for children with cancer. 

Here's an example of one of my presentation slides. In all reality I took so many photos of Mattie on his cancer journey that I practically have a photo to describe or illustrate just about any psychosocial concept!