Saturday, June 18, 2022

Saturday, June 18, 2022

Tonight's picture was taken in June of 2009. Friends went to Hershey Park and came back with this big kiss pillow for Mattie. Mattie wasn't a Hershey fan, as he truly disliked all kinds of chocolate. Even the smell of it made him sick. However, the pillow was a hit, he loved the bean bag texture, and of course was a big fan of the color red. 

I always wanted to take Mattie to the Hershey Amusement Park, as he loved rollercoasters. I figured he would truly enjoy the park, and at the same time my hope was to convince him to check out the chocolate museum with me. It wasn't meant to be and to this day, I have never gone to Hershey Park. Now to me there is no reason. 

Quote of the day: Love is unselfishly choosing for another’s highest good. ~ C.S. Lewis

Peter sent me this photo this morning! In fact it was one of the first things I saw while getting myself ready for the day. This photo was taken a year ago today! We went to South Carolina and that particular day we went on a private kayak tour. It was a great experience and we had a wonderful guide. 

I look at myself in this photo, and I appear much more rested and happy. I feel like I look and feel night and day from that moment in time. It is amazing how things can change in a year. Though I learned with Mattie, life can change on a dime. Within minutes, crisis can unfold. Which is why one has to appreciate good health and living independently when has these gifts!

Here is my usual morning routine (I do this EVERY day without fail):

• making the bed 
• showering and dressing
• making breakfast and vacuuming the first floor
• waking my dad
• showering my dad and dressing him
• helping him downstairs for breakfast
• starting a load of laundry
• cleaning up breakfast
• doing brain games with my dad
• doing physical therapy exercises with my dad

After the usual routine, I then drove to the farmer's market with my mom. I try to get us out and about, because life with my dad is a lot like caring for a baby. He has three modes: eating, sleeping, and the bathroom. I of course try to put this all into context, but it is very upsetting that he has no interests. It is also very isolating! He doesn't want to engage with the world or do anything other than sleep. 

While I was at the farmer's market, Peter was planting roses. There was a flower bed in our backyard that truly was a mess. Things were planted on top of each other and the plants chosen looked like weeds. Peter corrected the problem and now I feel like this pop of color will truly make the yard look botanical!

Friday, June 17, 2022

Friday, June 17, 2022

Tonight's picture was taken in June of 2009. As you can see, Mattie was wiped out. It took a lot to knock him out, but cancer and multiple surgeries took their toll. That day, Mattie's friend in cancer, Jocelyn, gave him "sunshine." Sunshine was a stuff animal, an albino boa to be specific. Jocelyn knew Mattie met a live albino boa at his 7th birthday party, so she got this plush fellow as a reminder. Sunshine traveled around with us and to this day, Sunshine remains in my bedroom at home. It is hard to believe that Mattie and Jocelyn both died from osteosarcoma. 

Quote of the day: Perspective is an incredibly powerful tool. It tempers how we receive information, and guides what we choose to do with it. ~ T. A. Sorensen

After my usual routine, I got my dad in his recliner around 11am, and then finished the Foundation Walk 2022 video. I have no idea if others truly enjoy or appreciate these videos. But I know I do, and it is a wonderful illustration of the energy around our virtual event. I greatly appreciate people wearing orange and supporting us each and every year. The loyalty of our supporters is a true miracle and one that does not go unnoticed or appreciated. 

The video actually takes me about a month to put together. It was funny, one day while driving to get groceries (about a week before the Walk in May), I heard a snippet of a song on the radio. It really captured me, especially its lyrics... this goes out to the drifters, and to the dreamers...." The song is upbeat and energetic and my immediate thought was..... this is perfect for the Walk video. Because I did not hear the song from the beginning, I had to google the lyric I heard and learned that the song's title is Wild Heart by Keith Urban. 

After the Walk is over, it takes me about a week to locate all photos from the event and to download them from the Internet. Then of course from there I have to create a storyboard for the video. All in all, this project took me weeks, and frankly given all that I balance on any given day, I am amazed I put this together. I say that because I no longer have moments of time where I can sit still and concentrate. I am constantly being pulled away and juggling various needs at one time. 

Needless to say, I am pleased with how the video turned out and it is just in time, as I am in the midst of writing our June newsletter, headed to go out electronically next week. The video has historically been featured in our post-Walk newsletter, and I am a person who likes to stick to tradition. 

Mattie Miracle's Walk 2022 Video: 

Thursday, June 16, 2022

Thursday, June 16, 2022

Tonight's picture was taken in June of 2009. Mattie was in the outpatient clinic that day with his friend, Maya. Mattie and Maya were good buddies and they did many creative projects together over the course of a year. That day, they created a performance stage within a cardboard box. Then they performed a whole show for us and others in the clinic. The theme of the show was space aliens!

Quote of the day: I am seeking, I am not lost. I am forgetful, I am not gone. ~ Koenig Coste

My dad's memory care center has had a surge in COVID. Some families have decided to pull their loved ones from the Center this week. I can understand decisions made either way. I elected to send my dad in on Monday and Wednesday. He gets tested daily and was required to wear a mask this week. Thankfully he is fine. Today I learned that the Center is closing down tomorrow to do a deep clean of the facility. They will reopen on Tuesday, with testing daily again next week. Honestly if it isn't one thing, it is another to worry about. 

Since the Center is not allowing in visitors or outside contractors this week, my dad's physical therapist came to the house today. I have been communicating with him through text messaging for weeks now. It was lovely to meet him in person and to go over my dad's exercises with him personally. He is an absolutely charming and professional person and I wish every therapist was this easy to work with. He gets along with my dad and the funny part is the therapist tells me that my dad is very compliant at the Center. However, at home, he can see that my dad pushes back and is more stubborn about getting up and doing his exercises. I felt vindicated to hear this, because getting my dad to do anything is like pulling teeth. If he had his way, he would sit in his recliner and sleep the day away. He only wants to move for meals and bathroom breaks. It truly is pitiful, or it is from my perspective. From my lens he has no joy in living. Of course this is my lens, not his. He is a far more sedentary person than me and therefore, whenever judging his quality of life, I have to look at it through his eyes. But trying to stimulate and engage him is close to impossible! Which is why going to the memory center is crucial. Sleeping the day away is not good both physically and mentally. 

Sunny went back to the oncology center today for follow up blood work and ultrasounds. I received a surprising call mid-afternoon letting us know that Sunny IS responding to treatment. The tumors in the adrenals, spleen, and bladder are slightly smaller. Which implies that we are dealing with cancer and I am glad I made the decision to start oral chemotherapy. Given that getting tissue samples from Sunny would compromise his life, we truly did not know if we were dealing with cancer. So I had to gamble between giving NO treatment or to try treatment. Given our experiences with cancer, we know the definite outcome of NO treatment (assuming Sunny had cancer). Each of the tumors has shrunk and the oncologist sounded very pleased with the progress in two weeks. Way to go Sunny!

Wednesday, June 15, 2022

Wednesday, June 15, 2022

Tonight's picture was taken in June of 2009, on the day of Mattie's sternotomy. This was a sight Peter and I got used to seeing... Mattie post surgery with IVs everywhere, bandages, drains, pressure cuffs, catheters, and a very weak and typically in pain child. It was hard to see your child like this and frankly no matter how much time lapses, I am not sure this is something that will ever be erased from my mind. 

Quote of the day: If we value our children, we must cherish their parents. ~ John Bowlby

My dad went to his memory care center today. While he was gone I tried to do some work and was on a conference call. By mid-day, I took my mom out for a salad, as leaving the house is important for mental sanity. 

The restaurant we went to had an outdoor patio. My mom loves the heat, so we decided to sit outside. It did not last long because we ran into a psycho squirrel. I am NOT a big squirrel fan to begin with. Typically I stay clear of them. As we approached the table, the squirrel circled around us and the table. As if we were getting too close to his nest. However, this table wasn't anywhere near the greenery. In any case, as I moved the chair to sit down, the squirrel jumped on my leg. Fortunately I had the menus against my leg and he hit the menu and did not touch my skin. I batted the squirrel away as if he was a tennis ball. That did not STOP him. He kept after us and then literally jumped on the arm of the woman next to us. That was enough. We never sat down. Instead, I went inside the restaurant to complain and asked for a table inside. However, I really wanted the management to know that there is a serious squirrel problem outside. This one isn't a cute furry fellow, but a menace that is bound to bite and scratch someone soon!

Typically when you get close to a squirrel, it will run away. A sick squirrel is more likely to display aggressive or hostile behavior towards people. Did you know that the teeth of squirrels are constantly growing, so they need to be worn down daily with plenty of gnawing. Able to chew through wood, plastic, rubber, and even metal with their strong teeth, these pests can deliver painful bites that draw blood. While healthy squirrels will not bite unless provoked, the chances of getting rabies from a squirrel bite is unlikely, as they very rarely become infected with rabies and have not been known to cause rabies among humans. With that said,  being bitten by a squirrel can possibly contain pathogens and/or diseases due to the animal’s feral lifestyle. 

All I can say is I am thrilled that I wasn't bitten by this psycho squirrel today and when I got home I wrote a formal complaint to the restaurant. I am a nature lover, but having an aggressive squirrel on the lose serves no one and it is a matter of time until it strikes out at a person or child. I will be curious if the restaurant responds to me, because what I do know is the lack luster response I received inside the restaurant wasn't appreciated. 

Tuesday, June 14, 2022

Tuesday, June 14, 2022 -- Mattie died 663 weeks ago today.

Tonight's picture was taken in the Spring of 2006. Mattie was in preschool, and Peter visited that day. Despite Peter's work schedule, he made time to engage with Mattie's school, to volunteer, and he even did a coconut cutting presentation for the children. Mattie's teacher, snapped this photo that day in class and sent it to me. It is truly hard to grasp that both Mattie and his teacher, Margaret, are no longer alive. 

Quote of the day: Sometimes our work as caregivers is not for the faint of heart. But, you will never know what you’re made of until you step into the fire. Step bravely. ~ Deborah A. Beasley

I consider myself a very organized person who can manage multiple things at one time. But balancing the care of my parents is a full time job times ten. I spend every waking moment jumping from one task or chore to the other. Never accomplishing much for myself. To say I am frustrated some days is an understatement beyond proportion. 

On an aside, I was reading to my parents this morning the daily news from my dad's memory care center. The news is always historical, interesting, and at times funny. One of today's passages was about MAILING babies and children through parcel post. I honestly couldn't believe what I was reading, so I did a little digging and indeed at one point in time (~1913) Americans mailed children through the actual mail. I mean literally, by attaching stamps to their coats. It was cheaper to buy the stamps to send a child by Railway Mail than to buy him or her a ticket on a passenger train.

This happened to about 7 children in total. I included the link for you to read it for yourself: https://www.history.com/news/mailing-children-post-office

Mailing babies was never the goal of the new parcel system and once the authorities realized that people were using it outside its intended purpose, they put a stop to it. In 1920, the Post Office Department officially put an end to baby mail. This was after new postal regulations barring the mailing of human beings were enforced. 

The first child to be sent via mail was James Beagle in 1913. He was an eight-month old baby who weighed 10 and 3/4 pounds and was sent from Ohio to his grandmother’s house in Batavia (also in Ohio). His parents paid 15 cents for postage and $50 for insurance.

All I could think was this was a very different world back then! The article mentions that people weren't turning their children over to strangers. That in many cases they knew their postal people very well. The mailmen actually road the mail train with the children, tended to them, cared for them if ill, and hand delivered the children to their destination. I can't imagine this whatsoever given my 2022 lens. Not sure if you find this as fascinating as me, but thought I would share this tidbit from today. 

Monday, June 13, 2022

Monday, June 13, 2022

Tonight's picture was taken in June of 2009. Mattie was in the hospital recovering from his sternotomy. The little R2D2 Star Wars figure you see in front of Mattie was given to him by his lung surgeon (I have it still!). This was an incredible doctor, who was not only extremely competent, but very compassionate and cared about his patients. SO MUCH so that we NEVER saw a resident. He personally visited Mattie post-surgery. 

By the time Mattie needed lung surgery, Peter and I were skilled at understanding the hospital system. So we told this surgeon we wanted a pre-surgical meeting with the team. Ensuring that everyone was on the same page about the surgery and most importantly recovery! Though this surgeon never had such pre-meetings before, he complied and organized one. After the meeting was over, he thanked us for having the meeting and understood why it was vital for our family. Do you know that even now, this surgeon is a yearly Mattie Miracle contributor?!

Quote of the day: Self-compassion is simply giving the same kindness to ourselves that we would give to others. ~ Christopher Germer

Tonight's quote resonates with me, particularly because I am very hard on myself. If I have a negative thought or feel angry, I interpret this as something is wrong with me. As if I am not entitled to these feelings and that I have to snap out of it. However, then I stop and think to myself..... how would someone else in my same position feel? I truly believe that most people doing what I do day in and day out would have cracked up by now. As I am not just providing care to my dad, I am caring for my mom, Sunny with cancer, this large house, and trying to run a Foundation. 

My parents occupy my every breathing hour. Today my mom made an appointment to meet up with a former student of mine. I would love for my mom to jump into the car herself, get to the meeting, and be able to have this connection without my involvement. But those days have long passed, and my involvement is now necessary. For those of you who know me well, I would imagine I am viewed as a listener who absorbs what people say and therefore am there to help and support. I believe this is how people have experienced me so when they meet with me now, for consistency sake, they most likely expect the same person. Certainly I can be this person, but now listening, emoting, and providing feedback takes energy. Energy I no longer have to expend. Instead now I need to be the talker, to be heard, not lectured to, but provided the outlet to be understood and supported.

When I am around others who tell me about their full lives, what they are accomplishing, and where they are going, I am happy for them on one hand and on the other, I think to myself..... what has become of my life? I have spent most of my adult life either caring for someone or dealing with a crisis. I have nothing to talk about now that is "normal." My life is filled with tracking bowel movements, helping with all activities of daily living, dolling out medication, and  providing structure, routine, and stability to two older adults. I am not saying this isn't an important job, as I know it is, but at the same time, I once again realize that most people can't relate to what I am doing, nor would want to. Therefore, this limits conversation and makes my life very isolating. This place of isolation is one I am quite familiar with and ironically I spent so many years after Mattie died, trying to re-stabilize. Whatever work I have done, I feel like I am back to square one and despite re-arranging my life for my parents, I find that nothing is ever good enough and someone is always unhappy. 

Sunday, June 12, 2022

Sunday, June 12, 2022

Tonight's picture was taken in June of 2009. Mattie was in the hospital, recovering from a sternotomy (to remove the 9 tumors in his lungs). Despite the fact that Mattie was part of the PICU nursing service (as he was a post-surgery patient), his oncology nurses came over and also cared for Mattie. This photo was spur of the moment. I did not ask his nurses to kiss him or pose. But this was how special each of these women were. Pictured with Mattie were Sarah Marshall (On the left, and a childhood cancer survivor herself. She was the nurse on duty the night/day Mattie died) and Ellen (one of Mattie's fabulous night nurses). 

Quote of the day: What you do speaks so loud that I cannot hear what you say. ~ Ralph Waldo Emerson

Over breakfast today, my mom handed me an article from her AARP magazine. It was entitled, It’s Time to Throw Out Stereotypes on Aging. I included the link to the article, if you wanted to read it for yourself. Some of it leaves you wondering why they had to do a survey about this topic, but nonetheless, there are a few results that caused me to stop and pause. The one that caught my attention has to do with quality of life. No surprise, as this is an issue that is near and dear to me regarding any age. Just to put the results into context, more than 2,500 people participated, representing the full range of America’s backgrounds, demographics and ethnicities. Another 25 adults 40 years old and older participated in in-depth interviews. 

Here was one of the questions asked of participants.......Assume for a moment that there was a pill that could extend your life by 10 years. How likely would you be to take that pill?

Do you have an answer for yourself? I know I did immediately! My answer was I can't answer this question without having MORE information. Specifically I wanted to know whether this pill was also going to ensure my good health. Because having more years, without having good health, to me is pointless. Ironically, guess who also shared my philosophy????.... those 80 years and older!

The results found that around three-quarters of adults across all age ranges said they likely would take such a pill, but one interesting finding was that those 80 and older were the least interested. When the question was posed without an age guarantee, but instead cited the promise of slower aging with extended health, the likelihood shot up to around 85 percent. Makes perfect sense to me! This older adult age group gets it, they know that more years doesn't always equate with quality of life. Unfortunately for myself, I learned this lesson early on in life. 

Here is another question asked of participants that intrigued me.... How would you rate the overall quality of your life, on a scale of 1 to 10?

The results indicated that 2 out of 3 of the oldest adults, age 80 and older, say they’re living their “best possible life” or close to it, compared with just 1 in 5 younger adults. The article highlighted that psychologically, people notice and prioritize the positive and let the negative go as they age.

With regard to quality of life, the article stated:

“It’s the ticking clock theory: We all have to die; as you get closer, you think, Hey, what really matters? When you’re young, you may think, I’m going to suffer now because it’ll be worth it later. But later, you realize none of that made me as happy as being with my family or taking long walks every day,” she adds. 

As 70-year-old Richard, who is a retired financial planner, puts it: “I did what I did to make a living, and I enjoyed it. But once I walked away, I honestly didn’t miss it for 10 minutes. That’s not my identity. That’s not who I am. My wife and I are heavily involved in our church. We’ve done mission trips to Cambodia, to Rwanda, to Australia, to China — to help dig wells and build homes and those kinds of things. I consider that to be who we are.”

When I read the above two paragraphs, what came to my mind was THIS IS ME! I may not be 70 or 80, but I think like someone much older than myself. Mattie getting cancer and dying, caused me to have insights and different priorities from most people in my age group. I have learned that LATER isn't guaranteed, that a job, wealth, expensive trips and so forth isn't what life is all about. In fact, these things don't truly make us happy (long-term) at the end of the day. Life is about meaningful connections, helping others, and trying to absorb the beauty of nature all around us. Or at least that is what is important to me and gets me through the day.