Saturday, April 2, 2022

Saturday, April 2, 2022

Tonight's picture was taken in March of 2003. Mattie was 11 months old and it was his first trip to Los Angeles. That day we took him to Huntington Gardens. Mattie loved being outside and was calmer when in nature. Which is why I now prefer being outside than inside. His personality rubbed off on me. I snapped this photo and it will always remind me of Mattie's favorite form of transportation... sitting up high on Peter's back. 

Quote of the day: It is not the mountain we conquer but ourselves. ~ Edmund Hillary

It is rather appropriate that I selected a quote from Sir. Edmund Hillary tonight. Each morning, as part of the brain games I have designed for my dad, we do a reading comprehension passage (today's was about Mt. Everest and Sir Edmund Hillary). Literally I buy workbooks through Amazon designed for school aged children. Our current book is at the 5th grade reading level. Each morning, we read a passage together and then my dad tries to answer the questions pertaining to the passage in order to work on his memory and comprehension skills. This is NOT one of my dad's favorite activities, but I am a big proponent of repetition. The more we do something, the more familiar it becomes to us. In the beginning my dad hated these reading comprehension books and couldn't process anything. Mostly because if left to his own devices he skips reading the passage and instead goes to the questions and tries to answer them. Which is why I do ALL his activities with him. That way I can make sure he is pushing himself to use skills or learn new ones. I remind him constantly that like the body, the brain also follows a use it or lose it principle. 

I woke up at 6:30am because our cleaning ladies were coming today. I have worked with the same cleaning woman since 2008, when Mattie was diagnosed with cancer. My neighbor, JP, paid for her to clean our townhouse back then because he knew I was on overload. It was a very special gift and from that moment on, I have been working with Blanca ever since. I know about her four boys and she knows about my family. Given that I can't possibly manage our house now on my own, she is even more of a God sent than before. However, because she arrives at 9am, I have to get my dad up, showered, dressed, and eating breakfast before she arrives. As I try not to get underfoot with her work. After I got my dad settled this morning, I took my mom out. This is the first time we have really ventured out to do something other than a big chore. 

We went to the bank, CVS, and stopped for the first time at a local farmer's market. Apparently my neighborhood has one every Saturday throughout the year. My mom and I had a good time walking around and chatting with the different local vendors. In the warmer months I would like to make this a Saturday tradition. As I firmly believe in supporting local farmers. I came home with all sorts of vegetables, apples, and even fresh herbs to plant in our garden. More work for Peter, but I suspect he appreciates any excuse to get outside, get fresh air, and be one with nature. 

Later this afternoon, we took my parents out for an early dinner. We venture ONLY to three restaurants. Since we go on a regular basis, we have become regulars. The management and many of the wait staff know us. Which helps me greatly given all that I am balancing. My dad looked out of it all day and though he likes going out to eat, I wonder how long we can continue this, as he looks half asleep while eating. In addition, he is so focused on eating that he lands up putting a ton of food in his mouth and then has trouble swallowing. It truly is hard to watch him and I constantly have to remind him to stop eating, to chew, and perhaps say a few words to slow down his eating pace. Needless to say I live on constant edge waiting for the next shoe to drop, and at times my own food doesn't go down correctly. All I can do is take it one day at a time. I have lived under the worst of circumstances before, so I know what it is like living with great stress and having to put my own needs on hold. I may know about it and how how to live this way, but it doesn't necessarily mean I like it. 

Friday, April 1, 2022

Friday, April 1, 2022

Tonight's picture was taken in March of 2003. Mattie was 11 months old and in one of his favorite gadgets... Tot Wheels. In other words a walker. Walkers were controversial during the time Mattie was a toddler, nonetheless (as they were viewed as unsafe and slowed down the ability to walk), it was a big hit in our home. It gave Mattie freedom and independence to zoom around the house and outside. Given Mattie was a late walker, he gravitated to this device. It brought him happiness, therefore, you know it was a hit with me. 

Quote of the day: The world breaks everyone, and afterward, some are strong at the broken places. ~ Ernest Hemingway

We got to Insight today around 10am for my dad's intake. What is very clear is that everyone who works there is very nice, friendly, and passionate about helping others. I have no doubt about this, but I am on the fence about the benefit of the program for my dad. I think ultimately what the program will accomplish is respite from managing his hour by hour needs. 

We had a group meeting with the head of nursing and the social services coordinator. My dad was involved in this meeting and they asked him basic questions. Some of which he was able to answer, and some he totally was off the mark, such as.... are you allergic to anything? He said no! He is allergic to several things and also is not tolerant to dairy. 

After they interviewed him and they could CLEARLY see what I see... that my dad has moderate stage dementia, they escorted him to an activity room for about 90 minutes, while we continued the intake. My mom and I spoke extensively with the social worker, the program director, and then the nurse. These women understand some of the challenges I have been facing and one told me she could tell that I am exhausted. Which I am! However, what she doesn't understand is I am balancing two parents, not just the needs of one. 

In any case the social worker tried to express how I must be feeling about this whole situation. Though I understood what she was saying, she wasn't really capturing what I was feeling. So I told her! I feel frustrated, angry, and upset that here I am a person with a Ph.D. and a mental health license and I can't figure out how to meet the cognitive needs of my dad. I admit that I am a person who likes to be very independent and in control. When I lose control of something that is very agitating to me. She tried to respond in an empathetic way and said I was making a good decision by bringing my dad to Insight. 

After our portion of the intake, they brought my dad back to us. Before he came back in, I asked the Program Director what he had been doing. She explained that he was part of the music program, got a snack, and took part in "facts about April" discussion. So when my dad came back into the conference room with us, we asked him what he did. Do you know he couldn't tell us ONE thing he did. It wasn't anxiety or an emotional response. Instead it is the significance of his memory impairment. Which is why I also have concerns about him participating in something I am not a part of. I won't be able to be institutional memory and therefore can't stimulate conversation with him on something I know NOTHING about! 

At times my waves of anxiety come flooding back. I had these feelings after Mattie died. In fact, after Mattie died I developed panic attacks (I learned they were panic attacks after being examined by a cardiologist. I wore a heart monitor and underwent testing. Thankfully my heart was physically fine.). I trained myself how to cope and manage them, but initially to combat the intense anxiety, I walked AND I WALKED. Some days I walked over ten miles. 

Now I can't escape and walk because I am running the show. That said, I can feel the anxiety coming on and the feeling that I am trapped and can't escape. So far I am able to cope with those feeling, but each afternoon, I do try to get outside with Sunny regardless of the weather. I feel fortunate to have wonderful nature trails so close to our home. I love it, but so does Sunny. 

Peter came out with us today. Our walks are our time to catch up with each other. 

Though I am overwhelmed, the fact that the cherry trees are blooming has NOT been lost on me. They are a thing of beauty and provide hope after surviving a long winter. 

Thursday, March 31, 2022

Thursday, March 31, 2022

Tonight's picture was taken in March of 2003. Mattie was 11 months old and I took him on a plane to California for the first time to visit my parents. I am not sure I would have made that adventure if I did not have a conference to attend. I had to attend the conference because I was accepting an award. I had a lot going on, because earlier in that month, I defended my dissertation. This photo captures my dad with Mattie. It is hard to believe how gravely things have changed for us from that moment in time.... Mattie is dead and my dad has dementia. 

Quote of the day: Kites rise highest against the wind - not with it. ~ Winston Churchill

This morning after getting my dad up, showered, dressed, had breakfast, finished brain games and his walking routine, I packed up the animals in the car because they had a wellness check with a new veterinary practice. Peter encouraged me to find a vet closer to home rather than remain with our vet in Washington, DC. I don't like change, but given our circumstances now, I need support closer to home. 

There are many vet practices around us, but I decided to go with Pender Vet Animal Hospital. I knew about Pender, because this is where we board Sunny when we used to travel. I was on the fence about going today, but it turned out to be fantastic. We have been assigned to the medical director of the hospital. He is a long time vet of 23 years. I absolutely loved him. Typically vets do not communicate well to humans. Or this has been my experience. Not Sunny's new vet. He asked about us and we asked about him. Ironically we have the same philosophy about medical care..... IT'S NOT JUST ABOUT THE MEDICINE. I think we will get along great. 

Sunny and Indie got a good check up and Sunny got his updated vaccines. The doctor talked to us about the fact that Sunny is a "senior" dog. Though I know this on some level, I don't think about it! Sunny is my Sunny! In any case, in two weeks, I am taking Sunny back to the doctor to undergo a sonogram of his kidney and liver, this is preventative, to catch any tumors before they could arise. The doctor has started Sunny on a two week med regimen for arthritis and wants to know if this new med will make a difference to his quality of life. We shall see. In any case, I made it crystal clear that I want Sunny to live as LONG as possible. I may have rescued Sunny, but I think Sunny has done volumes for us and our home. 

I am grateful that toiletries are coming in for Mattie Miracle. Each April, in honor of Mattie's birthday, we hold an item drive. It is hard to believe that on April 4th, Mattie would have turned 20. So many years lost. 

Since we moved into our home, I had to get connected with a quality company that does electrical, HVAC, and plumbing. I reached out to FH Furr. They have helped us in countless ways and I can't say enough good things about the company! Today I learned that FH Furr has included us on this community page! In fact, each November and April they take part in a company wide item drive for us. We are grateful for their commitment to Mattie Miracle. 

Wednesday, March 30, 2021

Wednesday, March 30, 2022

Tonight's picture was taken in March of 2003. Mattie was 11 months old. That day we took him to the US Botanical Gardens. Mattie's favorite mode of transportation back then was on Peter's back! My mom snapped a series of photos of us and I think this one is priceless. 

Quote of the day: Strength of mind is exercise, not rest. ~ Alexander Pope

I think caregiving of any kind takes great strength, determination, and the ability to find hope when truly there isn't much to feel good or happy about. Last night I looked at the calendar and could see we had no appointments scheduled for today. I thought that was great because I got up at 7:45am. Which is LATE! I needed the sleep, especially since I am dealing with the never ending head cold. 

I took my time this morning, changed our bed, started the first load of laundry, got myself showered, dressed, and made breakfast. I woke my dad up at around 9:10am. I got him showered and as I was getting him dressed, the door bell rang. Peter answered it but I did not think much about it. Next thing I know Peter is knocking on the bathroom door because he wanted me to know that my dad's physical therapist was here for his appointment! Naturally I BLEW it! I forgot to write down the appointment that was made last week. So I had to quickly get my dad together, down the stairs, and to his appointment. Typically when my dad comes downstairs he has breakfast right away. So any change in the routine is a BIG problem. 

Meanwhile, my mom kept saying to me..... I thought you said no one was coming today. She kept at me, and how I kept it together without screaming is beyond me. YES I made a mistake, I forgot about today's appointment. I am balancing a thousand things, if this is all I screw up on, I should get a gold star. Any case, I did not have breakfast either and as always participated in my dad's physical therapy session. 

After the therapist left, my dad and I had breakfast. As a result of the dementia, my dad eats incredibly fast. My joke is he doesn't even chew his food. He is focused on eating and piles the food into his mouth. At times this is a problem and he can start choking. In any case, after he quickly ate, he said he had to go to the bathroom. So I stopped eating and took him. However, I was too late, as he had a bowel movement, in which I had to clean up him. So the morning in which I thought was going to be slower turned out to be a disaster.  

Meanwhile shortly after the therapist left, both of my parents were out cold. Both of their energy levels are low and I am hoping with spring coming I can some how change this. As I am NOT a big proponent of sleeping. I think sleeping begets sleeping, which may explain why I am always moving. 

While my mom was sleeping, so was my dad. The highlight of my day was getting outside this afternoon with Sunny for a walk. Sunny rescues me on most days, as he forces me to get outside regardless of the weather and move. 

Tuesday, March 29, 2022

Tuesday, March 29, 2022 -- Mattie died 652 weeks ago today. 

Tonight's picture was taken in March of 2003. Mattie was 11 months old and it was his first trip to Los Angeles. I had a conference to attend in Anaheim, so we all went out. Mattie had big trouble adjusting to the time difference, so for the first several days he was up at 4am, which was 7am east coast time. Peter and I felt like walking zombies. No matter how we encouraged Mattie to go back to sleep, he just wouldn't do it. No surprise to me as Mattie had two modes.... on and off. Once on, it was very difficult shutting Mattie off. 

Quote of the day: Normalize being a little crazy for what you believe in. ~ Maxime Lagacé

Today I feel totally out of it. I have been dealing with a head cold for days now and standing outside yesterday at my friend's memorial and walking Sunny, did not help me. My only symptoms are a post nasal drip, a sore throat at times, and sinus pressure and congestion. What I need is sleep, rest, and no stress. Not going to happen here. 

I did my usual routine and chores, and dealt with a nurse's visit to examine my dad. Later this afternoon, I sat down and put together a Google docs form for the Foundation. I have wanted to create an application for families coping with childhood cancer to apply for funding for therapy sessions. In fact, I am working with a social worker in Michigan, who has earmarked one of her patients to be the first recipient of our funding program. She is working with me to help design the form and the logistics for such a request. Ironically there are NOT many non-profits out there that provide financial support for therapy.  

Though my days are very full, I am determined not to let the Foundation fall by the wayside. I assure you this isn't easy given all that I am balancing. But as our supporters know, we won $10,000 (through Shark Tank) to start this new therapy initiative, and I am committed to make it happen this year! 

Here's what the application is beginning to look like..........................

"Families of children with cancer are typically referred within the community to professionals who can help support their psychosocial needs and concerns. Families face a host of mental health issues as a result of a childhood cancer diagnosis, such as depression, anxiety, medical traumatic stress, substance abuse, and eating disorders. Therapeutic support has been shown to improve health outcomes and quality of life. Mattie Miracle is committed to helping families access such support.

Mattie Miracle is offering funding support for therapy sessions with a licensed mental health provider for children with cancer and their families. The Foundation will reimburse families up to $1,000 for sessions. 

Families can apply for Mattie Miracle Therapy Support only once, but we will consider an additional request based on need. After submitting your application, you can expect to receive a follow-up email within three weeks.

Questions, please reach out to Mattie Miracle's President at: vicki@mattiemiracle.com."

Monday, March 28, 2022

Monday, March 28, 2022

Tonight's picture was taken in March of 2005. Mattie was almost three years old. As you can see we were working hard that day to keep Mattie busy. Peter put painter's tape on the floor to help Mattie with his play schemes. Mattie was in constant motion and my joke was he had two speeds, on and off. Nothing in between!

Quote of the day: Only the weak are cruel. Gentleness can only be expected from the strong. ~ Leo Buscaglia

It was frigid today! Despite the bitter cold and winds, Peter and I wanted to support my friend Margy's family. As today marks the one year anniversary of her death from ovarian cancer. When Margy died last year, I was in Los Angeles helping my parents. Therefore I was unable to attend her funeral or go to the cemetery. 

I have to admit after Mattie died, I really am not a fan of going to funerals or cemeteries. I am sure that sounds ridiculous, but it is my reality. 

In honor of Margy's anniversary, our Foundation newsletter went out today to our supporters and I also created this photographic garden flag and brought it to the cemetery. On it I wrote... Hope Grows Here. It is a play on words as Margy ran a childhood cancer non-profit for twenty years called, Growing Hope. 

I do not know if you can see all the trinkets around Margy's memorial plaque. There are shells, toys, flowers, stones, and all sorts of messages. It really is whimsical and captures her spirit. 

The family held a gathering today by the gravesite. I was so impressed that so many people showed up. We were all bundled up but that did not stop us from sharing memories, stories, and reflections. 

While at the cemetery, I noticed others coming to visit the gravesites of their family members. In turns out that Margy's husband has become friends with these individuals. People united in grief, is a very powerful force. Though we did not know each other's loved ones, we all understand the hole that loss produces. It was a cold weather gathering, but nonetheless one that helps us all process the day and our feelings. 

Sunday, March 27, 2022

Sunday, March 27, 2022

Tonight's picture was taken in March of 2005. Mattie was almost three years old. Peter was getting Mattie used to a ball and a bat, with the hopes that he would be interested in baseball. Like most kids, Mattie used the bat to hit the ball along the floor. Almost as if he was playing field hockey. Mattie was a busy fellow, constantly curious, and it took a lot to engage his mind and body. But I learned to rise to the challenge and then some. 

Quote of the day: Life is not easy for any of us. But what of that? We must have perseverance and, above all, confidence in ourselves. We must believe we are gifted for something and that this thing must be attained. ~ Marie Curie.

I got up and did my usual routine this morning. I then got my dad up, showered, dressed and downstairs for breakfast. My mom said my dad was up several times last night and she also had to get up to help him. So this morning she was out of it and still dealing with a head cold or her persistent lung infection. I can't tell which one. Either case, she isn't getting better, which means I need to consult her pulmonologist. 

After breakfast, Peter did my dad's walking routine with him and then I had both of my parents rest. It is funny that they get up early, just so after breakfast they go back to resting. I do not think I can break this cycle with my dad, but I am hoping we can at least have an impact on my mom. Unfortunately she needs time for her health to stabilize, so I am not pushing her right now. Being the caregiver for my dad for two years in Los Angeles has set her back both physically and mentally. 

While my parents were resting, I did the laundry and finished the Foundation's March newsletter and updated our website. I honestly have NO IDEA how I was able to put the March newsletter together, as March was a hellish month with hospitalizations on top of my usual caregiving routine. But keeping Mattie's memory and legacy going are always top priorities for me, and therefore where there is a will there is a way. 

Though it felt like winter outside, Peter and I took Sunny for close to a 3 mile walk. I love when Peter comes out with me, because we can chat, catch up, and also explore the woods all around our neighborhood. There are so many wonderful walking pathways and I am thrilled to have access to them without needing to get into a car first.