Saturday, March 11, 2023

Saturday, March 11, 2023

Tonight's picture was taken in March of 2009. To me this was quintessential Mattie! Mattie received this knight costume from his support team. Mattie put on all the items and was hobbling around his bedroom dressed as a knight. I called him 'Sir Mattie!' I don't know if you can appreciate just how full our home was by that point in Mattie's treatment journey. There were toys and items piling up everywhere. In fact, in front of Mattie on the floor was an aero mattress. When Mattie was home between hospital admissions, this was where I slept. Mattie was connected to IVs at night and needed assistance and supervision. It was amazing what we endured, but we would do it all over again, because our goal was to save Mattie's life. 

Quote of the day: Appreciation is a wonderful thing. It makes what is excellent in others belong to us as well. ~ Voltaire

We have many stressors in our life. But one of which I hadn't been talking about was Peter's job. Peter has had quite a time of it! Peter worked for a company for 15 years, but in 2019 it was acquired. What commonly happens in such transitions, is people lose their jobs. This was a huge change in our lives right around the time of the pandemic, because that particular company was part of our lives when Mattie was diagnosed with cancer and then died. Losing this connection, was significant, because it felt like Peter wasn't just losing a job, but we were losing another link and connection to Mattie. 

So in the midst of COVID, Peter was actively looking for a job. I can assure you this was a very difficult time in our lives, and given the state of emergency we were all living under, no one was thinking about hiring. In addition to that, Peter had to learn about the art of finding a job through electronic means. Because think about it...... over 15 years ago, people found jobs through actual networking and with paper resumes. By 2019/2020, that methodology was old hat and we had to learn the new art form of finding a job. Peter got quickly up to speed about the art of showcasing one's self on Linked In. Gone are the days of recruiters working for the individual looking for a job. Recruiters are instead hired by companies to find quality job candidates. So the challenge is how do you attract a recruiter's attention on-line?! I am sure Peter could write a chapter on the science of this alone. 

In the Fall of 2020, Peter was hired into a home health/hospice company based in Tennessee. Thankfully he could work remotely and was plugging away until June of 2022. Again, a pivotal moment in our lives, when the investors of the company decided they needed to cut costs and eliminated Peter's role. With the intention of putting the company in a downhill spiral. So in two years time, Peter has been faced with the crisis of finding a job, not just once, but TWICE. 

Though I must admit, the mechanics of finding a job, weren't as daunting to us now as they were in 2019. Peter knew the process and what he had to do, but of course being without employment is very difficult financially and emotionally. We have huge expenses such as a mortgage, managing a household, caring for my parents, and the list goes on! So you can imagine the underlying stress Peter has been living under on a daily basis. 

In December of 2022, a job opportunity presented itself with a company based in Seattle, Washington. Peter has been in conversation with this company since then, had all sorts of interviews, and this week even went to Seattle to meet with key people. 

The exciting news is Peter was offered the President job of the company today. I am so proud of him for enduring this very long and difficult process. However, the company said several things to Peter that caught my attention. They feel, he has the necessary "heart" to run the company. This was stated by the Co-Founder of the company. She also said that Peter's personal experiences, on top of his extensive professional experiences, make him the ideal candidate for the job. As the company works with many patients across the United States who are on clinical trials. As I always say, Mattie was our greatest teacher in life! Congratulations Peter, I knew he could do it, and I am glad I told him to wait it out for the right job.... I had faith in him and knew in time the right opportunity would come along. 

Friday, March 10, 2023

Friday, March 10, 2023

Tonight's picture was taken in March of 2009. Mattie was in-patient at the hospital and that day he went down to the physical therapy clinic. Mattie built up this pyramid of blocks, and as you can see, he was sitting behind them,  anxiously awaiting to kick them all down. The building and kicking, were excellent activities to get him Mattie to use his arms and legs. Given that Mattie was recovering from limb salvaging surgery, his therapist had to find creative ways to get Mattie moving. Mattie loved a challenge and building, and therefore capitalizing on these strengths made his physical therapy sessions more effective. 

Quote of the day: According to the report Caregiving in the U.S. 2020: A focused look at family caregivers of adults age 50+ (conducted by the National Alliance for Caregiving and AARP), the number of individuals caring for older adults (those 50 years or older) has increased by 7.6 million caregivers since 2015.

In one of the professional association magazines I receive in the mail, I noticed an article entitled, The mental health needs of older caregivers. Naturally this caught my attention, so I decided to read it. For those of you who may not know, family caregiving isn't just something I do, it is something I also researched for my dissertation. I conducted original research with 100 caregivers in the Washington, DC area in 2003. Given that my maternal grandmother suffered a stroke when I was in college, and I observed how her devastating illness impacted her and my whole family, I entered graduate school compelled to study this phenomenon. 

While reading the article in the magazine, written by a mental health professional, I was immediately turned off. I mean way off. Mainly because she refers to those of us caregiving for aging parents as "old." I honestly couldn't get passed her terminology and therefore shut down from the whole premise of her article. When I conducted my own caregiver research, I was very sensitive to such terminology and you will never find the words elderly, senile, and other derogatory terms in my writings. 

However, what caught my attention in this article, was she cited the original study, entitled, Caregiving in the USA- 2020. This study was conducted by AARP and the National Alliance for Caregiving. I love the National Alliance for Caregiving and turned to them often as a graduate student, especially when I was looking for current studies and national data on caregiving. 

Some of the data from Caregiving in the USA study caught my attention, and I inserted a couple of the bar graphs below.

The study compares data from 2015 to 2020. What is startling is the duration of care has increased. In that 28% of family members are caregiving for someone five years or more. So the intensity of caregiving is not just a sprint, but a marathon in many cases. 

In addition there has been a 24% increase in the number of care recipients that one family member is managing. Though I may be in the minority, in that I care for two people at one time, my segment of the caregiving population is growing. 

This chart has me laughing. On average caregivers provide 22 hours of care to a loved one per week. This average for the week, equates to one day in my house. 

There appears to a rise in the number of care recipients living with their caregiver. A 32% increase since 2015. 

This chart explains the types of assistance caregivers provide on a daily basis. On average caregivers provide 1-2 forms of support that is listed here. I however, provide all of them on a daily/hourly basis. 

In addition to activities of daily living, I also provide all instrumental activity support. Everything listed on this bar graph falls into my daily/weekly list of tasks. 

When I see this actual data, it makes me pause and really reflect on why I am so tired. I try to push this reality aside (otherwise I couldn't get through the day, week, year), but these charts speak for themselves. It is very difficult caregiving for one person, but I have two and I have done this now since November of 2021, without a day off, time away, or any kind of break. It is no surprise that one loses one's self in the process, becomes isolated, and worse I have gotten used to this isolation because I know juggling any sort of social outlet would only further exhaust me.

Thursday, March 9, 2023

Thursday, March 9, 2023

Tonight's picture was taken in March of 2009. That day, Mattie received a visit from his "girlfriend," Charlotte. Mattie and Charlotte met in kindergarten and as I always said.... they brought out the best in each other. Throughout Mattie's cancer journey, Charlotte visited. Mattie wasn't always in a great mood, and could be snappy. But that did not prevent Charlotte from coming to the hospital. The hospital is a daunting place even for an adult. But for a young child, it is overwhelming and frightening. I learned a lot about friendship from observing Charlotte and Mattie. In any case, that day, Mattie's art therapist dropped off some silk screen hoops to Mattie's room. Mattie and Charlotte used markers and created all sorts of art work on these silk pieces. This particular one was designed by Mattie. It featured Charlotte front and center. Of course no Mattie creation would be complete without a sun, sky, and grass!

Quote of the day: Try to be a rainbow in someone’s cloud. ~ Maya Angelou

Peter sent me some photos from his flight to Seattle yesterday! Look at all that snow in the mountains!

Coming into Seattle. 

The last time we were in Seattle was in 2011. Peter and I met my parents there and then we boarded a cruise for Alaska. It is hard to believe this was 12 years ago. My parents were much healthier back then, and my dad was able to walk without any assistance. Honestly the sad part about caregiving for parents with dementia, is that this is how I know and experience them. The sharp, clear minded, and active individuals I may have once known, have completely drifted from my memory. 

Peter is ready for a full day of job interviews. He starts at 7:30am and goes until 6pm! We wish him luck!

I would have to say being a caregiver to parents is beyond challenging. My parents have different needs and different personalities. My dad is very needy, almost child like, but takes direction and is a happy camper. My mom on the other hand is equally needy, but doesn't like support, supervision, and resents it. My mom reminds me often that her mom, my grandmother, was the ultimate caregiver. Meaning that I am NOTHING like her! It is true my maternal grandmother was an extraordinary person. Calm, patient, loving, and very competent at providing care. My grandmother and I, have different personalities. As I am much more temperamental, feisty, and have a mind of my own. So when my mom says nasty comments to me, I don't sit back and take it. In fact, yesterday I landed up screaming yet again. She has no appreciation at all for the multiple things I juggle. Instead of acknowledging this, she piles more stuff on me. Constant demands! So I snapped. Of course when I snap, that's when I get to hear about me versus my grandmother. 

Yesterday, I took my parents out for an early dinner. Whether I am home or out to eat, it is a show. There is no eating in peace. One of them constantly needs something, and it is hysterical trying to have a conversation with Cheryl, our server. As Cheryl was catching us up on her difficult week, she highlighted that she was at a storage facility (moving some boxes into storage) with her son and ex-husband. While at the facility, they all got locked in the elevator for 30 minutes. Which of course is scary. Instead of being able to hear more about this story, my mom interrupted to say that this happened to her too. This is a typical thing with my mom. I don't know if it is a competition thing, trying to get attention, or what, but she will always bring the conversation back to herself and outdo whatever story is being told. 

For example, my mom told Cheryl that she too was once stuck in an elevator, and the only way she was able to get out, was she had to do what is depicted in this photo. She had to scale the wall and climb through the ceiling hatch. I listened to this and honestly this is the very first time I ever heard this story! I would think something this traumatic, I would have heard before at some point in my life. My mom was dead set that this happened and my dad and I were just looking at my mom. I personally concluded that this was yet another one of her delusions!

What is a delusion? A delusion is a belief that is clearly false and that indicates an abnormality in the affected person’s content of thought. The false belief is not accounted for by the person’s cultural or religious background or his or her level of intelligence. The key feature of a delusion is the degree to which the person is convinced that the belief is true. A person with a delusion will hold firmly to the belief regardless of evidence to the contrary. 

There are many explanations for why delusions occur, but for this particular circumstance, I am chalking it up to dementia. Despite the fact that my mom's brain scans are completely normal, there is something NOT normal about her behavior. So in addition to all the other tasks I manage, I also have this psychological component that makes my days endlessly exhausting. 

Wednesday, March 8, 2023

Wednesday, March 8, 2023

Tonight's picture was taken in March of 2009. Mattie was home from the hospital and as you can see, our living room floor was completely transformed. We had toys, Legos, and trains everywhere. In fact, one of my mentors gave me a box of Lionel train accessories before he died. He wanted Mattie to have them, and Mattie of course loved each and every piece. When I tell you that our home looked like a warehouse when Mattie was sick, I am not kidding. It remained like that for many years after Mattie died because I just did not have the energy and strength to manage the clean up. Nor could I emotionally handle what the clean up represented. 

Quote of the day: And it is still true, no matter how old you are, when you go out into the world it is best to hold hands and stick together. ~ Robert Fulgham

This morning was an early start for Peter, as he was in an Uber at 6:30am. He is now in Seattle, pursuing a job opportunity. Thankfully the opportunity would allow him to work virtually, because no offense to Seattle, but the weather is a nightmare. 

Though Peter left early, he was his usual thoughtful self, and set up breakfast dishes and things for me, so that when I got downstairs, I literally could hit the ground running. Which was very much appreciated. 

This is also a Peter tradition! When he goes away, he leaves me loving post-it notes. He has done this throughout our marriage. The notes are all over the kitchen. Given my daily routine, these messages really perked up my day. 

The notes even made it to the refrigerator!

Also in the pantry!

I did my usual morning routine. Got my dad to his memory care center, then came home and managed my mom. She is slowly improving, but still not well. I have no idea how she would have gotten any better without antibiotics. She is now on her second round of antibiotics and I am hoping within a few days she will be stronger. This illness has left her depleted. 

Meanwhile, I got on the phone with the pulmonologist office today because I want my dad to be a patient of this doctor too. This doctor has been a lifesaver for my mom, unlike her internist. Of course nothing is simple, I waited on the phone awhile and then once I got an appointment I had to work with the staff on getting my dad signed up under my patient portal. I manage all my parent's doctor appointments and communications. 

This afternoon, I am taking my parents out for a late lunch/early dinner. I am very tired from cooking, serving, and cleaning up three meals a day, for almost two weeks straight. That is of course on top of all the other caregiving tasks I do. But here's the kicker.... our oven is NOT working. I am glad it happened now, when I can work around it (as thankfully the range still is operational), but there is never a dull moment in this house. 

Tuesday, March 7, 2023

Tuesday, March 7, 2023 -- Mattie died 701 weeks ago today. 

Tonight's picture was taken in March of 2009. This full body scan was taken at the hospital and it shows all of Mattie's prosthetic parts. I always joked with Mattie that he was the bionic man. He thought that notion was hysterical. I tried to make Mattie understand that having these prosthetic bones made him unique and that his bones would be stronger than anyone else's! The wire you see on the left hand side of the film was an IV with contrast, which was sent through Mattie catheter (connected directly to the large vein that led to Mattie's heart), to create these images. 

Quote of the day: The good physician treats the disease; the great physician treats the patient who has the disease. ~ Sir William Osler

This morning, I woke up, not in a great mood. I was juggling a lot as always, and had to get my dad up, dressed, fed and out the door to a doctor's appointment. Given that my mom is still not feeling well, I literally couldn't wait for her to get it moving to take her along to this appointment. So I left her at home. But before I left, she wanted to know where her new antibiotics script was! That sent me right over the deep end and I started screaming. 

Last night, I reached out to my mom's pulmonologist and I told her she isn't improving. Given her long standing lung condition, he decided at 10:30pm to put her on a strong antibiotic. Which meant that some time today I had to pick up the new script. How my mom thought I could have gotten up, got myself ready, the first floor cleaned up, breakfast made, my dad up, showered, dressed, the bed made, and laundry started, and also had time to go to CVS to pick up this script is beyond my comprehension. 

Of course in the moment, I can't always think rationally and calmly. Now looking back at this, I laugh. How I thought my mom could step outside of herself for one minute to rationally think about this is funny. Both of my parents are very myopic. Their needs are the priority ALL THE TIME. There is no room for anything else. I know this, and yet there are times this dysfunction gets the best of me. Like this morning!

After my tirade, I had to get my dad in the car and drive him to the hospital. It is about a 30 minute drive. My dad sees a rehab doctor every 6 months. This is the doctor we met last March, when my dad was admitted to the hospital for a pacemaker placement. It is thanks to this doctor that my dad was spared going to a nursing home for rehab. Thankfully he was admitted to the hospital's intensive rehab program for a week, where he did therapy three times a day, and this got him back into shape in order to be able to live at home under my care. 

While being examined today, the doctor did not like the sound of my dad's cough. Ten days of this cough and congestion and even antibiotics aren't helping. It was suggested that my dad see my mom's pulmonologist. So yet another think for Vicki to work on and figure out. 

Monday, March 6, 2023

Monday, March 6, 2023

Tonight's picture was taken in March of 2009. Mattie was home between hospital stays and Peter and him worked on Legos for hours and HOURS! Mattie was very happy to create a Lego village in our living room. Mattie could play with Legos for hours and in all reality, they were our life line to normalcy. They provided us the necessary diversion from cancer, to work as a family and just be ourselves. I can't tell you how much conversation occurred during these times. I think the activity of building enabled Mattie to let his guard down and just be a kid. 

Quote of the day: In nature, nothing is perfect and everything is perfect. Trees can be contorted, bent in weird ways, and they're still beautiful. ~ Alice Walker

This morning I made the decision to send my dad back to his memory care program. He is basically stabilized and not coughing. His energy level is lower than ever and I feel it is crucial to get him moving and re-engaged with the world, before he can't! It was my hope that I could get my mom moving and outside too! It has been 8 days of being isolated at home, with non-stop cleaning, cooking, and managing symptoms and demands. 

Mid-day, I got my mom in to the car and took her to Starbucks. She loves having tea and snacks at our local store. We managed in the store for about one hour. After which, she developed a coughing fit and was coughing up yellow junk. So I removed her and took her right home. Today was her last day of antibiotics and I have already alerted her doctor that she may need more support. My mom suffered from pneumonia and sepsis years ago when I was in college. She got that sick because she was caregiving for her mother. Since that bout of pneumonia and hospitalization, she is quite fragile when it comes to colds and respiratory infections. While my dad is returning back to normal, my mom is still struggling. 

This afternoon, I had just about enough. After I got my parents settled in the family room, I encouraged Peter and I to get outside and go for a walk. Prior to my parents moving in, I could walk miles and miles a day! Now unfortunately they have depleted me. I get more tired and I don't have the energy I once did to walk. This is very depressing to me. We did get out and walked over two miles, but it is clear to me that I need a walking routine, both for my physical and mental health.

Sunday, March 5, 2023

Sunday, March 5, 2023

Tonight's picture was taken in March of 2009. Mattie was going through his chicken nugget and French fry phase. Whenever Mattie requested a particular type of food, we did whatever it took to find and retrieve it. I mean this literally. At 3am one day, while Mattie was hospitalized, he wanted Chef Boyardee. Do not ask me why, because this was not something we ever served Mattie. But he must have heard about it somehow and wanted it then and there. Of course, pre-cancer if Mattie made such an outrageous request at 3am, we wouldn't have accommodated it. But I distinctly remember Peter leaving the hospital and went to our local CVS which is open 24/7. Peter came back to the hospital with Chef Boyardee in hand. However it was a miracle that he wasn't injured as he told me about deer which jumped out in front of his car on the way to CVS. I honestly do not know how we survived any and all of this. 

Quote of the day: We live in a world in which we need to share responsibility. It’s easy to say, “It’s not my child, not my community, not my world, not my problem.” Then there are those who see the need and respond. I consider those people my heroes. ~ Fred Rogers

It was another full day on the farm. My parents are still sick and now I am growing more concerned. With each day they do not move around and be active, the longer I feel it will take for them to rehabilitate and rejoin the world. I can see both of them are struggling now with movement. I recall learning in the hospital back in March 2022 (when my dad had his pacemaker surgery) that one day of being sedentary for an 80+ year old is equivalent to being idle for three to four weeks. 

At some point this week, I need to break their pattern and get them moving, even if they are not 100%. After my usual morning routine, I got my parents settled in the family room and Peter and I went out to the grocery store together. It was the FIRST time I left the house in a week! 

Sunny was sitting outside on the deck this morning and check out who came to spend some time with him..... Do you see the bird hopping on down? 

 

This week, our next door neighbors moved in. They have four children and this afternoon, they came over to thank us for all the gifts we brought over. 

I have prepared three meals a day for a week now. Today, of course, our oven decided NOT to work! It truly is fitting! There are days I absolutely hate having a house, and this house in particular was such a nightmare to move into, because it needed a total overhaul of its infrastructure. I am hoping this oven problem is an easy fix, but if it is like everything else in my life, it is going to be a royal problem. 

Saturday, March 4, 2023

Saturday, March 4, 2023

Tonight's picture was taken in March of 2009. I remember this day vividly! The child life playroom was having a ribbon cutting ceremony and party. Mind you the playroom had been open prior to this for months, but nonetheless, we were thrilled to celebrate its existence. Why? When Mattie started treatment in August of 2008, there was NO playroom in the pediatric units. When I tell you it was a nightmare without this space, I am not kidding. There was no where to go, other than the hospital room itself or the hallways. The playroom opened up a whole new world for Mattie and it made an unbearable experience a little better. Mattie was selected that day to help cut the ribbon at the ceremony and Geoffrey, the giraffe, gave Mattie a high five!

Quote of the day: I'm very brave generally,' he went on in a low voice: 'only today I happen to have a headache.' (Tweedledum) ~ Lewis Carroll

Peter is in our front yard today, working in the garden! Sunny went out to help, but as you can see, he was sleeping on the job! I feel badly for Sunny because he was so used to my attention and daily walks when we lived in the city. Now I hardly have time for anything other than caregiving. Thankfully Sunny enjoys our yard and his outdoor time with Peter. 

While inside today, helping my parents, Peter sent this this photo from our garden. To me this means, spring has finally sprung!

I have been taking Sudafed all week because of my head cold and congestion. It is the only thing that helps me manage my symptoms, however, I have found that it also keeps me up at night. So last night, I did not take Sudafed and did finally sleep better. But of course that meant that I woke up very congested and my head has so much fluid in it today, it felt like it could explode. At one point today the pain was so bad, I wanted to scream or cry. But honestly who's going to listen? So I sucked it up and moved onto the next task. 

The only advantage of my parents being sick, is I have more time at home to get work done. So far this week, I finalized the Foundation's Walk website, tested it, and launched it. I worked on our Foundation's March newsletter and updated the Foundation's website. However, given how I am feeling, I am now going to take a forced break (even for an hour) before I have to make dinner and manage the next task.

Friday, March 3, 2023

Friday, March 3, 2023

Tonight's picture was taken in March of 2009. I know this photo had to be taken on a Friday, because on Fridays the university chemistry club visited the pediatric units and did hands on experiments with the kids. Mattie absolutely loved this club and no matter how badly he was feeling, he always wanted to participate in their antics. Sometimes the club even came into Mattie's two by four of a hospital room. 

Given that we now live in the post COVID era, where masking is commonplace, this photo may not strike you as being odd. But think about our world prior to COVID. Most of us never wore a mask on a daily and hourly basis. But for children with cancer, this is very common place. They must wear masks when their white blood cell counts are so slow, making them susceptible to all sorts of viruses and infections. 

Quote of the day: Life is like a bicycle. To keep your balance, you must keep moving. ~ Albert Einstein

Last night my mom was complaining so much about her cold symptoms while we were having dinner, that literally mid-bite, I asked Peter to hand me my cell phone. My mom has been lamenting about not being in California and if she was in California, her doctor would have started her on antibiotics already. I couldn't handle it anymore, and I decided to contact her pulmonologist. Since it was after hours, I had to leave a message and wait for the on-call physician to get back to me!

I resorted to her pulmonologist because I know my parent's internist would be no help. As many of my faithful readers know, I call this doctor, dopey. Dopey lives up to his reputation. I can appreciate why he is judicious about prescribing antibiotics. But in my parents case, they have been fighting this upper respiratory cold for a week and NOT getting better. In addition, with their age and underlying health conditions I would think this physician would take notice. Or at least think twice about the benefits of prescribing antibiotics. 

I feel like my parents physician has left me to do everything this week, without guidance and help. In any case, it did not take any convincing of the pulmonologist last night. She quickly prescribed a z-pack and Peter went out to CVS to retrieve it. Thankfully our pharmacy in Arlington (where we used to go when we lived in the city) is open 24 hours a day. It is practically the only one in our region open all night. Any case, they filled the script in record time and within an hour, I started my mom on the medication. 

Yesterday, I thought my dad's condition was stabilized. But as soon as he heard that my mom was prescribed antibiotics, his symptoms somehow magically reappeared. His cough is back with a vengeance and he is coughing up yellow stuff. Needless to say, I wrote to his doctor last night requesting a z-pack for him. I told him that my mom is already on one, and we have given it a week and there is still no improvement. 

This morning, I checked my dad's portal. There was NO message from the doctor. So at 9am, I called the office. Turns out dopey is having dental surgery today and is away from the office. His physician's assistant, just had a hip replacement surgery, so she is out too. Needless to say, I spoke to the manager of the office and he could tell I was not a happy camper. Dopey needs to have a system in place if he is going to be out of the office! Otherwise, I guess his patients can only get sick on days he comes to work! The office manager, put me on hold, and somehow got a hold of the doctor before his surgery. End result, my dad is now on antibiotics too. 

I have played nurse maid, on top of my usual caregiver role, for a week and I am tired. I think I am so stressed out that I am not sleeping at night. I have had bouts of insomnia before in my life, and I would say this entire week it takes me hours to get to sleep. Fortunately once I get to sleep, I stay asleep, but given that I have to get up so early, not falling asleep until 2 or 3am is disconcerting.  

Meanwhile, if you ask my dad why he did not go to his memory care program this week, his answer will be.... 'I don't know!' Then he will say, "because I have COVID." I have reminded him that he doesn't have COVID and tested negative. But things just don't compute. I have gone in circles with him today about the fact that he has a cold and a bad cough. Therefore, he can't go into the center when so sick. I even wrote the word, SICK, in his daily journal, in red ink. Since Sunday, I have counted each sick day in his journal, but no matter what I do, he retains nothing, has no interest in anything, and there are times I think I could get a better response if I was talking to the wall. 

Thursday, March 2, 2023

Thursday, March 2, 2023

Tonight's picture was taken in March of 2009. I wasn't present for this special moment, but Peter and Mattie's nurse sent me this photo. Mattie was in the child life playroom, and he, his nurse, and Peter were having a competition. They wanted to find out who could more accurately follow along and do yoga positions. This may not seem like a big deal, but Mattie was healing from three limb salvaging surgeries. He couldn't walk independently, but despite all of this Mattie was able to keep his balance and hold various yoga positions. When I saw this photo back then and even now, I am in awe of what Mattie was able to do given all that he faced. 

Quote of the day: Flaming enthusiasm, backed up by horse sense and persistence, is the quality that most frequently makes for success. ~ Dale Carnegie

I learned this morning that my dad does not have COVID. His negative test confirms this. My dad is on the mend. He still has a slight cough, but it much better than my mom. My mom is struggling with exhaustion and a terrible head cold. I have her on all sorts of cold meds and last night when she was upstairs changing for dinner, I heard a big thug. I did not think much of it, until I called her down for dinner. At which point, I realized she fell in her office, with the door locked. So we had to figure out how to open the door to assist her. Fortunately she did not hurt herself, but I have to keep an even closer eye on her now. 

My parents were resting all day today. While they were resting, I made it my business to finish the Walk website and start testing it today! Persistence and determination are my keywords! They define who I am, especially when it comes to Mattie's Foundation. 

Despite having a head cold myself, and not sleeping much last night because of a post nasal drip, I worked the day away. I am proud to say that the Walk website is up and operational and that I will be able to announce this website link in our March Foundation newsletter. That was my goal!

The landing page of the Walk website features the group participant photo from our 2019 event. That was our 10th anniversary Walk and our last in-person event. 

COVID forced me, and all non-profits, to think more broadly and virtually. In 2020, we translated our live event into a virtual one and will continue the event virtually indefinitely. Given my family circumstances now, there would be no way I could plan and host an in-person event. I am thankful we made the investment in the technology to host such an event and that we now have supporters in all 50 states participating. To see our Walk Page, go to: https://2023.mmcfwalk.com/

I have been working on corporate sponsors for our event. Currently our thermometer reads $32,583. Our fundraising goal is to reach $100k.

In addition to launching the site, I tested our registration, donation and raffle sites today. I created a personal Walk page. It features a photo of me, Peter, and Sunny at CureFest on the National Mall in 2016. 

I then created a Walk page for Peter. It features a photo of us from our 2012 Walk. Back then, we used to have themes associated with our Walks. That year it was Love of Family. After that year, we then moved away from themed Walks, because we wanted the Walk itself to be the focus and the event.  

I also created a walk page for my parents. The photo on the page was taken at Butterfly World in Florida. Butterfly World is an ethereal place that Mattie loved to visit, and that we appreciated as a family. I miss our trips to this special place.