Saturday, April 9, 2022

Saturday, April 9, 2022

Tonight's picture was taken in April of 2007. We were celebrating Mattie's fifth birthday. A day never to be forgotten. We planned a party at the National Zoo. What we did not plan on was a deluge of rain. I thought the party was going to be a disaster. It turned out to be a great day, because we basically had the zoo to ourselves, all the animals were out and frolicking in the rain, and the kids loved the adventure touring the zoo in boots, raincoats, and umbrellas. 

Quote of the day: I love those who can smile in trouble, who can gather strength from distress, and grow brave by reflection. 'Tis the business of little minds to shrink, but they whose heart is firm, and whose conscience approves their conduct, will pursue their principles unto death. ~ Leonardo da Vinci

I have spent the past couple of days (besides my usual routine and tasks), trying to sort toiletry items that have come into the Foundation for our Item Drive. On Friday, Mary, from FH Furr, dropped off two large boxes of donated items from the company to our Item Drive. We got connected to FH Furr because they have done extensive electrical, HVAC, and plumbing work on our home since we have moved in. 

Meanwhile, Peter has been doing a big clean up job outside the house. He has also planted bulbs and done some other landscaping. While outside this morning, Sunny was with Peter and Sunny enjoyed the freedom of the front yard.

Isn't this a happy pooch?

Friday, April 8, 2022

Friday, April 8, 2022

Tonight's picture was taken in April of 2006, at Mattie's 4th birthday party. That was the first year we had a party outside of the house to celebrate the occasion. We chose Riverbend Nature Center, and Mattie had a dinosaur themed party. Mattie and his close friends got to meet some local animals with a naturalist, went digging in a sandbox for plastic dinosaur bones, and took a walk in the woods and learned about trees and plants along the way. It was a fun and memorable day for all of us. 

Quote of the day: Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all. ~ Dale Carnegie

It was another early morning, as both of my parents had appointments with their primary care doctor. This is the doctor I have referred to as Dopey! Unfortunately he hasn't graduated from that status with me. He and I are like oil and water. My dad needed a health form completed in order to start Insight's memory day program on Monday. Mind you I sent this form to the doctor's office manager last week and even called him on Monday of this week to make sure that the form got completed by TODAY. Without this completed form, my dad can't attend the center. I tried every way possible to make Monday's start date possible, but in typical dopey fashion, he wouldn't complete the form today and said he needed the weekend to do it! I took a deep breath and alerted this start date change to Insight. Dopey was seeing my dad every 6 months before. Now he has upped it to every three months. Personally I think this means that he needs to keep a closer eye on my dad and his disease progression. 

While at the doctor's office, my parents asked him about the fourth COVID shot. The doctor encouraged them to get it. Why am I telling you this? Because my dad asked the doctor the same question about the shot no less than 6 times. My dad's cognitive issues are very pronounced and to me he has been on a rapid decline since I saw him last April (2021) in Los Angeles. The move to Virginia, and another hospitalization, haven't helped him either. 

The doctor talked with all of us today about a DNR (do not resuscitate). The reason he brought this up was because it was a question on the Insight intake form. I have medical power of attorney for both of my parents and in their health directive it makes it clear that I can make determinations about their care and life saving measures. The doctor wants us to consider a DNR for both of my parents (despite the fact that I checked no DNR). A DNR instructs health care providers not to do cardiopulmonary resuscitation (CPR) if a patient's breathing stops or if the patient's heart stops beating. Thus, physicians, nurses, and others are not to initiate emergency procedures such as chest compression, mouth-to-mouth resuscitation, electroshock, insertion of tube to open airways, and other forms of resuscitation.

I do not view my dad's situation as being equivalent to Mattie's. Mattie had a DNR, because his diagnosis was terminal. My dad could go on like this for a while. So again I don't agree with this doctor. He tried to tell me that sometimes performing life saving measures on someone my dad's age produces MAJOR impairments that can totally strip away one's quality of life. I heard him, I am processing what he is saying, but I also do not feel comfortable signing a DNR for the memory care center to have on file. I think at the end of the day, I feel like this doctor just doesn't make the effort to understand me, the nature of our family situation, or our wishes. I have my own physical coming up this week, and I will address this topic with my own doctor. 

Thursday, April 7, 2022

Thursday, April 7, 2022

Tonight's picture was taken in April of 2005, during Mattie's third birthday party! That year we had a Blue's Clues themed party, as Mattie loved that blue TV character. We had all sorts of fun at the party and a student of mine even came and did a magic show, which included a white bunny named Hobbes. 

Quote of the day: A truly strong person does not need the approval of others any more than a lion needs the approval of sheep. ~ Vernon Howard

In the midst of everything else I have going on, on April 4th (Mattie's birthday), our Foundation's Walk website went live. Our goal is to raise $100,000. To date, we have raised 20% of our goal. Come check out our site. The Walk is virtual, therefore you can support Mattie Miracle where ever you live. 

Come Walk with Us

It was another early morning, as both of my parents had appointments with the cardiologist. I like this doctor, he answers all our questions, and allows us all in the same room with each other. This way I can easily participate in both appointments. After the appointment, I mailed things for the Foundation, and picked up mail. Then took my parents out to lunch. I have to admit today wasn't my finest hour. I chalk it up to exhaustion and having no freedom. My dad can ask the same questions over and over. Minutes apart! Most times, I calmly answer him, but today I was in no mood. My respond was snappy and his response was equally unstable. As he slammed the table and started cursing. Some people maybe intimidated by that, but that only fuels my anger. At times I have to remind my parents that the average child wouldn't be able to manage this day to day dysfunction. 

This morning I did my usual. I got myself up, showered, dressed and made breakfast. Then I went to get my dad up, showered, and dressed. We all had breakfast together and then I handed him one of his activity books. Today was word finding. Because I wanted to cut up melons and pineapple (fruits by parents eat for breakfast), I handed the book to my dad and asked him to get started while I was working (something I don't typically do, but I wanted to get some things done before leaving the house). I focused on cutting fruit and minutes later I turned to look at my dad and he was sleeping at the breakfast table. He had pushed the workbook aside. I woke him up and asked what was going on. He told me he finished the exercises, which I knew was NOT possible. So I glanced at the word find puzzle and noticed he did NOTHING. Not one word. I asked him to explain what was going on and how come he did not do any of the brain exercises, yet told me he did. This is NOT a memory issue, this is an attitude issue. The combination of memory and attitude together drive me up the wall some days. 

So unless I sit with him and walk him through these exercises, he won't do any of them. Which leads me to question who is this benefitting???? I don't need brain exercises, and the only one getting frustrated is me. He has NO desire to do anything, to learn anything, to be engaged with anything. Today was NOT a day I could absorb that, as it takes a great deal of emotional energy to cope with this day in and day out. I remind my dad constantly what his cardiologist says.... Use it or Lose it! This applies to his physical and cognitive state! Yet the only one who wants him to walk, do his exercises, engage with his brain activities is me! I need to regroup and usually that means I take Sunny for a walk. But it continues to rain, pouring actually, and need to find another outlet on days like today. 

Wednesday, April 6, 2022

Wednesday, April 6, 2022

Tonight's picture was taken in April of 2004, at Mattie's second birthday party! That year the theme was TRAINS. Mattie loved all things that moved, and it seemed like the perfect party for him. By year two, Mattie got the hang of birthday parties and participated and was engaged with family and friends! My parents were visiting for Mattie's birthday and my mom snapped this photo. 

Quote of the day: Problems are not the problem; coping is the problem. ~ Virginia Satir

I got up at 6am today in order to make an appointment at my doctor's office for a blood test. My appointment was at 9:15am. But given all that I juggle in the morning, I needed ample time to get my dad up, washed, dressed, and breakfast made. While I was out of the house, my dad was visited by his in-home nurse and then his physical therapist. 

I drove back and forth from home to Arlington, VA (where my appointment was), which took me about thirty minutes each way! When I got home it was in time to meet the physical therapist. As I am very concerned about my dad's lack of energy and ability to get up our staircase. Whatever they taught him in acute rehab in March went right out the window. He doesn't remember going up the stairs sideways, and frankly as I try to instruct him to do this, I find that his backside is leaning heavily on my shoulder. I know I am NOT strong enough to support his weight this way! 

As soon as I parked the car and walked in the door, I was hit by a terrible smell. It smelled like rotten eggs. I quickly went to our Easter Eggs on display to determine if they spoiled. It wasn't the eggs. As I got closer to my dad, I realized the smell was coming from him. I am telling you it was awful, and wafting throughout the first floor. The physical therapist was working with him, so I did not want to stop the session, so I asked my mom whether my dad had a bowel movement recently. Mind you he had one before I showered him this morning. My mom responded that he did have another bowel movement, but that he was cleaned up. WRONG! NOT cleaned up at all. In fact, he must have soiled his Depends undergarment before he went to the bathroom, and no one changed him while I was gone. Instead, he was sitting in it, which is why the smell in the house was a nightmare. 

After the therapist left, I brought my dad back to the bathroom. I cleaned and changed him, cleaned the bathroom, and Lysol'ed the entire first floor. Just another day in paradise. 

All week, we have our landscape company working on our yard. They are planting trees and bushes and changing the look of one of the flower beds in the front yard. The activity of the landscapers triggered my neighbor to take notice. She called me today. Not to talk about the work, but to ask how I was doing! It was a qualified ask, because she then proceeded to give me a lecture about needing more help at home, that I can't do this alone. She then told me that I seem like a "control freak." If you want to rub me the WRONG way, you do two things...... you dictate to me what I should be doing and second call me a control freak! I was in check on the phone, and kept my attitude to myself, but was pretty silent and wasn't dialoguing. When I stop talking, YOU SHOULD WORRY! That is when you know you have lost me! 

In any case, I do not care for help and support couched with judgment and pronouncements! Perhaps the intentions were good, but she clearly doesn't understand the full range of issues I am balancing. Nor do I wish to invest in telling her. 

Tuesday, April 5, 2022

Tuesday, April 5, 2022 -- Mattie died 653 weeks ago today. 

Tonight's picture was taken in April of 2003, at Mattie's first birthday party. That year we only invited family and close friends. I have to say that Mattie was beyond overwhelmed that day and he and I landed up going upstairs several times to regroup. Too many people and noise for him that first year!

Quote of the day: Shallow men believe in luck. Strong men believe in cause and effect. ~ Ralph Waldo Emerson

It was quite the morning. I got my dad up and in the shower. While in the shower, he had the biggest bowel movement ever. According to him he did not even know he was having a bowel movement, but once he went, he was then using the hand held shower head to spray this mess around the shower. When I tell you I was dealing with a nightmare I am not kidding. Honestly the average person could not handle any of this!

I have NO IDEA why everyone around me doesn't understand that all these symptoms are dementia disease progression. After all, we are seeing my dad communicating less, sleeping more, always exhausted, having issues swallowing, and now incontinence with urine and bowel movements. To me this is the definition of late stage dementia. Or at least progressing rapidly from moderate to late stage.  

My dad had two doctor appointments today. One was with the foot doctor and the other was with the technology company that manages his pacemaker. Taking my dad from one place to another is no easy task, as his ability to move is quite limited. In any case, on top of this it was a rainy and depressing day. While at the foot doctor office, there was another older adult patient who completed her appointment when we arrived. She asked the office staff to call her ride so she could get home. Needless to say, this woman was still waiting after my dad's appointment was done. My mom commented to me that this woman was still there and yet we had our appointment and were leaving. My response was.... not everyone is lucky enough to have a Vicki. I suppose a snappy response, but truly quite accurate. 

In the midst of craziness, I bought an Easter egg dying kit. My mom and I colored Easter eggs. Since I spend SO MUCH time at home, I figured there should be pretty and cheery things around us. 

I can't remember the last time I did Easter Eggs. This wasn't something Mattie liked doing. 

I have one area in our kitchen where I like to display seasonal things. So this area is ready for spring. 

A close up of our eggs! We put stickers on them and they all look like adorable forest creatures. 

Monday, April 4, 2022

Monday, April 4, 2022 -- Mattie's 20th Birthday

Tonight's picture was taken on April 4, 2002! The day Mattie was born! Mattie's due date was April 6, but he kicked his way into the world and after 48 hours of labor, was born by c-section. Even on the day he was born, he was wide eyed and alert! Mattie knew there was no time to waste, he had to live every minute of every day!

Quote of the day: Nothing is so strong as gentleness, nothing so gentle as real strength. ~ Saint Francis de Sales

Today is a day NEVER to be forgotten. Mattie would have turned 20 years old. It is hard to believe we celebrated 7 birthdays with Mattie, and NOW 13 without him. It is hard to know what to say to a bereaved parent! Do you say.... Happy Birthday Mattie, thinking of you today, or just not say anything at all?! I am sure parents who have lost a child have different feelings about this. But for me saying nothing is far worse than saying nothing at all. 

It would be very easy for me NOT to post something today, but that's not me, nor do I feel this would do justice to Mattie's memory and legacy. On the anniversary of Mattie's birth and death, I always post "My Dearest Mattie" letter. A letter I had on display at Mattie's celebration of life event. The letter highlights the story of his birth, a story he LOVED hearing especially during stressful and difficult times. On the day we learned that Mattie's cancer metastasized and we were moving from curative to end of life care, Mattie asked to hear this story while he crawled into my lap. 

We miss you Mattie, we remember you always, and you are my greatest teacher. I am quite certain that Mattie's life impacted not just us, but his care providers, his friends, and community. Mattie's cancer journey showed us that CHILDHOOD CANCER IS NOT JUST ABOUT THE MEDICINE and from our experiences with Mattie, it led to the development of evidence based Psychosocial Standards of Care. Even in death, Mattie works in mysterious ways. Happy 20th birthday to an incredible boy. As Mattie would say.... OOOGA BOOGA (translate to "I Love You")!

--------------------------------------------

My Dearest Mattie,

It is said that parents love their children right from the moment they are born. However, in your case, our love for you began as soon as we learned we were going to have a baby. In fact, right after seeing your sonogram picture, we felt like proud parents. We posted those pictures everywhere. We shared these pictures with practically anyone who would listen or showed interest, and each September when I taught prenatal development in my undergraduate human development class, out would come your sonogram pictures to illustrate my points. Even my students got a sneak peek at our baby, a baby who would have a profound and meaningful impact on not just his parents but also every community he touched. Daddy and I did not only love you, we FELL IN LOVE with you, and that love grew stronger with each day. Your energy, spirit, love for life, intellectual challenges, sense of humor, and loyalty to your friends and family were only some of the wonderful traits we always admired in you.

This video is a tribute to you and your wonderful, yet short life. It seems fitting as we celebrate you, and say good-bye to your physical presence that I share the story about how you entered the world. The story of your birth had to be one of your most favorite stories to hear, and I found during times when you were reflective, overly tired, or in need of hugs and tenderness, the request for this story arose. In fact, I remember on August 5th, the day we found out that your cancer metastasized everywhere, you and I were sitting in the hospital’s rose garden, and you requested the story. It was almost as if you knew this was going to be a bad day, so in essence we might as well brace ourselves, cuddle, and prepare for this together.

Here is the story I always shared with you. A story Daddy and I will never forget. On April 2, 2002, at 11pm, I decided to head to bed. I was anxiously awaiting your birth, and as your due date approached, I couldn’t help but wonder, when will “the baby” be coming? I was restless and uncomfortable, so while in bed, I began to watch television. I was having trouble concentrating on what I was hearing, mainly because you were kicking up a storm inside of me. At which point, the kicking became so intense, that I literally felt something pop. You clearly wanted OUT, and you were going to kick your way into the world on your terms. Naturally after feeling this pop, I looked down at my tummy, and when I jumped out of bed, I realized my water had broken. This only happens to 25% of moms, and in retrospect, I should have guessed that this was just the beginning of how different our lives were going to be together. I immediately called the doctor and told her what happened. She asked if I was in pain, which I wasn’t, and she instead told me to get a good night’s rest, because my baby was going to be born the following day. Well I can assure you after hearing this news, sleeping was the farthest thing from our minds.

So on April 3, 2002, Daddy and I headed to the hospital and we were admitted to the maternity unit at 8am. The labor process began, but it was a VERY slow process for me, and at times as you moved inside my tummy, Daddy could see your head pushing against my backbone. Needless to say Dr. Mike, the anesthesiologist, became my favorite doctor that day. The hours kept rolling by, and still there was NO sign of our baby! I was getting weaker, I developed an 102 fever, and by 11pm I really had no energy to give birth to you. In addition, to how I was feeling, your oxygen supply was getting cut off, and your chin was positioned in such a way that would make the birthing process almost impossible. So it was at that point that the doctor recommended an emergency c-section. Things began to happen very quickly around me. I was signing paperwork for surgery and Daddy was being transformed by putting on a bunny suit so he could enter the operating room.

I had never been in an operating room before in my life, but I really wasn’t concerned at that point about myself. I was solely focused upon you. I was wide-awake for the c-section, but unable to see the process, which as you know, was probably a good thing. Daddy on the other hand found the whole thing very exciting, and began to videotape and take pictures of the surgery. Literally a team of people surrounded me and I will never forget Dr. Mike, the anesthesiologist who sat by my side, and talked with me and did whatever he could to keep me pain free.

When you have a c-section, your arms are strapped to the operating table, so I couldn’t move, and directly over my head was what appeared to be a rope with a clamp that was holding open my abdominal cavity. Normally by this point I would have passed out, but when it came to you, I developed strength I never knew I had. As the doctor began cutting, and finally got to you, the first thing she said was, “what is this?” That is NOT what you typically hope to hear when having a c-section. The doctor let me know that I had a grapefruit sized tumor on my bladder, and my immediate thought was, did this affect the baby? The next thing I knew, I felt her tugging, and I heard the loudest cry ever. Now here is the part of the story that I know was always your FAVORITE! I would always try to replicate the sound I heard coming from you that day, a sound that will always remain in a parent’s ear. It was a very large WAAHHH! WAAHHH! At which point the doctor told us two things: first, that you were one of the most beautiful babies she had ever seen, and second, that you had quite a set of lungs on you! I concurred with both statements.

The doctor then brought you over to me, and she felt that I needed to be the first person to touch you. So despite my arms strapped to the table, my right hand miraculously reached out and grabbed your tiny, soft, and cute foot. It was a moment I will always cherish, a moment in which I will never forget, and a moment I am so happy you too enjoyed hearing about. Each time I retold the story I felt as if it further bonded us together, and I always enjoyed hearing your comments, thoughts, and reactions to your story.

Seeing you made Daddy very happy! Though he was worried about me, since after the c-section, I had to have bladder surgery to remove the tumor, we both agreed that Daddy should stay with you and accompany you to the nursery. It is there that Daddy got to see you cleaned up, he learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. Within an instant, Daddy became one of your fiercest protectors, and he cared for you for five days straight while we were in the hospital together. In fact, Daddy is the first person who changed your diaper, and though those were five very challenging days in the hospital, they were days that helped us form our strong family ties. Ties that were imperative and that we relied on for seven years of your life!

Your presence is so greatly missed. Nothing seems the same, is the same, looks, feels, or tastes the same without you in our lives. May you always know that Mommy and Daddy love you, cherish you, and that feeling will remain with us forever and always. Good-bye my Mooshi Moo angel and goodbye Daddy’s best buddy. With love from Una Moon and Daddy!

Sunday, April 3, 2022

Sunday, April 3, 2022

Tonight's picture was taken in March of 2003. Mattie was 11 months old and visiting my parents for the first time in Los Angeles. My parent's neighbor lent us her wooden high chair. Typically Mattie wasn't into high chairs, but he entertained the notion for a short time, as he ate by the table when we ate. Unlike me, food did not mean that much to Mattie. In fact, I usually had to do a song and dance, or a lot of fun activities to get him to eat anything. 

Quote of the day: Courage isn’t having the strength to go on, it is going on when you don’t have the strength. ~ Napoleon Bonaparte

I got up at 7am today because I knew if I wasn't up early, I wouldn't be able to accomplish the things I needed to do. When you are a caregiver, forget about your own schedule. Your schedule is totally dictated by those around you. This can be very very frustrating because I truly believe the human spirit needs freedom and independence in order to feel alive and thriving.

After I got myself showered and dressed, I went down stairs and set up breakfast for everyone. Then I went back upstairs and got my dad up. Before his hospitalization, he was able to get up on his own and start the grooming process such as shaving and brushing his teeth. Unfortunately each hospitalization is a cognitive set back, which strips away one more layer of independence. Now my dad needs instruction to get up, and basically what to do next. He appears to be lost without this guidance. So I sat while I talked him through brushing his teeth and shaving. Then helped him into the shower. Thankfully he can still shower himself, but the shower is a juggling act as I have both a shower chair and walker in there with him. 

Once my dad is out of the shower, this is where he needs 100% of my help. Help with toweling off, putting on powder and lotions, getting dressed, brushing his hair, putting in eye drops and so forth. While my dad is in the shower, I am making the bed and compiling trash accumulated from the night before. For most people, after doing this, they would feel like they put in a FULL day. But that is only the start of my day. Once I get my dad dressed, I have to help him down the stairs. Which means that I put a gait belt around his waste and guide him down each step. When we make it to the first floor, I help him to the breakfast table. He eats independently but does need supervision as he eats way too fast and this can cause choking. Needless to say by the time I sit down for breakfast, he is already done and waiting for me to give him his next instruction. I feel constant pressure. 

After breakfast, I clean up, and then move onto brain games. This entails everything from reading comprehension passages, numbrix, word finds, and other puzzles. Once that is done, I then time my dad and make him (and I mean MAKE HIM) walk five minutes around the first floor. If I don't require him to move, he won't! My mom calls him a "potted plant." If left to his own devises he would sleep in a chair the entire day. It is a very sad commentary. 

This morning after his routine, I ran out to the grocery store. Who knew the grocery store could be a form of respite. But it is! I got everything, came home and put things away. Then I got my mom in the car and we went to two open houses. My mom has always liked real estate and seeing homes. So given that it was freezing and windy, I thought this would be a good outing. Naturally Peter can't come with us because he is watching my dad. As you maybe able to figure out, Peter and I no longer do any activities alone. Back to the open houses..... after seeing more houses in my own area, I can safely say I picked the best house for our situation! That was a GOOD feeling actually. 

Later this afternoon, we all went out to eat. Again to one of the three restaurants we dine at, where it is familiar to my dad. While Peter was driving to the restaurant, I literally fell asleep in the car. It was a great feeling and I wished the drive was longer.