Thursday, May 4, 2023

Thursday, May 4, 2023

Tonight's picture was taken in May of 2009. Mattie was in the hallway of the pediatric hospital unit, doing a physical therapy exercise. Mattie did not want to use his walker, so instead, I was the walker for the day. Do note that Mattie was wheelchair bound, so any steps he took was monumental. Of course there would be NO stepping at all if Anna (Mattie's physical therapist) did not turn therapy into a game. Mattie responded to all games and loved the participation of his close hospital friends. 

Quote of the day: A pearl is a beautiful thing that is produced by an injured life. It is the tear [that results] from the injury of the oyster. The treasure of our being in this world is also produced by an injured life. If we had not been wounded, if we had not been injured, then we will not produce the pearl. ~ Stephan Hoeller

I know my life and days are not normal. Well normal in the sense that others can't always relate to my daily tasks and responsibilities. I absolutely get it, I can't believe what I am facing either on a daily basis. This morning was the usual race to get ready, because my dad's physical therapist was coming to work with him at our home. After all of these activities and dealing with the laundry, I returned a phone call. 

How it is possible that a call could transform my mood, but it did. Not for the better. In fact, after the call was over, I was agitated, angry, and depressed. All at the same time. There was nothing per se that triggered all these emotions from the call, other than it reminded me once again... I am DIFFERENT. I do not fit in, and my life is SUCK UP with intense caregiving tasks and huge responsibilities making it impossible to lead my own life. Needless to say, this wasn't a good mental place for me to be in all day. 

When Mattie was battling cancer, I sometimes had to isolate, and block out the world. I find my life isn't much different now from the social/emotional sense. The world maybe well intentioned, but I am not in the right place to be able to receive it. I don't feel like I can participate in normal conversations anymore and trying or pretending to only further upsets me. 

Peter's mom sent me a pineapple corer! She knows that I peel fresh fruit for my parents EVERY morning. It is a real labor. She sent me this in hopes that it would make cutting open a pineapple easier. So Peter tried it and believe it or not.... it works! 

It cuts the pineapple beautifully, within seconds!

Amazing, no?

When I came home today, after taking my parents out, I found an unexpected gift waiting for me. My friend and colleague, Nancy, sent me teas for Mother's Day. I happen to LOVE tea and drink it three times a day. There is something about the act of making tea and drinking it (even if I am working) that seems special to me.

A close up of the teas! Mother's Day is another challenging holiday for me, and Nancy's gift is reminding me of two things.... to take a moment for myself, and to always remember I am a mom.

Wednesday, May 3, 2023

Wednesday, May 3, 2023

Tonight's picture was taken in May of 2009. Believe it or not, this was during a physical therapy session. Mattie was trying to take some steps using his reverse walker. To inspire Mattie to walk, we had Meg (child life intern) egging Mattie on! Meg is the woman in the white shirt on the right. She would always compete with Mattie in these hallway races. Without Meg, the sessions never went well, but with her pretending to race Mattie, his competitive nature kicked in and he would try to walk. Here you will see Anna (Mattie's physical therapist, wearing purple) trying to knock Meg out of the way so that Mattie would win the hallway race. The antics that were done to motivate and inspire Mattie will never be forgotten. Amazing women!

Quote of the day: Creativity is seeing what everyone else has seen, and thinking what no one else has thought. ~ Albert Einstein

It was quite the morning. I got up at 5:30am, in order to get everything done, so I could take my mom to the city for her hair and nail appointment. We had to leave the house at 9am. These early mornings, I find super stressful! I land up herding both of my parents and frankly this frazzles me. 

This morning, I was working right on schedule. Well that was until I turned my dad's shower on. I couldn't get any hot water in his shower. Hot water was coming out of the sink and tub, but not the shower. I wasted close to 20 minutes on trying to figure this out. Finally I decided to give my dad a wash basin filled with soapy warm water to wash himself down. Of course he was thoroughly confused and put a ton of shampoo in his hair (exactly what I told him NOT to do). I had to dump water over his head to rinse him clean, and I felt like I was getting a second shower for the day. Could my dad have gone without a wash off? Perhaps, but given how sensitive his skin is and his use of depends, I feel it is vital for him to get cleaned off each morning. Somehow I made it work and was also able to get out the door in time to take my mom. I assure you though by 9am, I was spent! 

After the salon appointment, I drove to MedStar Georgetown Hospital and delivered a few loads of toiletries for our Snack & Item Cart!

The surprise I received, while visiting the Hospital today, were these clay creations! When the director of art therapy was cleaning up the clinic, she found these four objects. Apparently they were all created by Mattie. I have NEVER seen them and I can't even recall when they were made. Clearly the clay was never glazed! Nonetheless, the top ribbon shaped object (on the right) says, Maya #1. Maya was a friend of Mattie's! She did not have cancer but a blood disorder, which brought her to the same pediatric clinic as Mattie. Maya is the same age as Mattie and they instantly bonded. I will never forget the first day Mattie met Maya. They were sitting around the art therapy table, with a whole bunch of kids. Mattie was quiet, as he really did not prefer group interactions. At the art table, Maya started talking about how much she hated needles. This caught Mattie's attention. It was what she was saying, that he could relate to 100%. Mattie even told her as much. From that day forward, they became close buddies. I think it was adorable that Mattie made Maya a #1 ribbon. 

I am saddened I have no context to these items. Nor do I remember seeing Mattie make them. Then again, Mattie was very prolific while in the hospital, so I couldn't possibly remember every object. What I do know is art therapy was both a great and positive distraction, and also it provided Mattie an outlet to express his feelings in a creative way! Not with WORDS, but with clay, paint, and other media. 

Tuesday, May 2, 2023

Tuesday, May 2, 2023 -- Mattie died 709 weeks ago today.

Tonight's picture was taken in May of 2009. Mattie was pictured next to two of my students, Ariel and Tess. These two women are very bright, compassionate, and gifted. I am proud that Ariel became a pediatric nurse and it is always lovely to hear how Mattie played a part in career choice. This happy photo was taken at the Mattie March, an event Mattie's care community planned for him at his school. At the event was a crafts table. Mattie designed several things and he truly had a wonderful and memorable day at this event. It was the Mattie March that laid the ground work for Mattie Miracle's annual Walk. 

Quote of the day: Every sunrise is an invitation for us to arise and brighten someone's day. ~ Richelle E. Goodrich

It was my usual day of craziness. But within a whole lot of tasks, chores, and managing demands, the Foundation had a very successful day. Today alone, we received $35,000 worth of donations, bringing our Mattie Miracle Walk thermometer up to $97,150! Honestly it is a miracle, because for the past week I was really struggling internally with.... HOW WAS I GOING TO RAISE ALL THIS MONEY by May 21? 

This afternoon, after I drove my mom home from physical therapy, my neighbor text messaged me. She said that she and two of our four children wanted to come over and visit with us! When little Caroline (four years old) walked through my front door, she handed me this sign! The family is donating $25,000 to Mattie Miracle. It leaves you speechless doesn't it?! My neighbor and her children take a deep interest in the Foundation and the kids themselves want to learn all about Mattie!

Then I learned today that we have a NEW presenting sponsor for the Walk this year. CSA - Client Solution Architects has agreed to donate $10,000 to our work! I am honestly in awe of how today went. My neighbor and CSA truly are enabling us to make many Mattie Miracles possible. This is on a professional level. On a personal level, I struggle everyday as a caregiver and this leaves me little to no time to be myself, to have the freedom to meet with friends, to do Foundation work, to go to a doctor's appointment and the list goes on. Which is why receiving these two major gifts today reminded me that what I have helped to build is indeed recognizable, it serves an important need in the cancer community, and others want to be a part of the journey with us. Knowing this is the greatest gift, because no matter how overwhelmed I am, I never take my focus off the fact that I had a son named Mattie! Mattie's life and cancer journey can never be forgotten and these memories drive me to help countless others like him. 

Monday, May 1, 2023

Monday, May 1, 2023

Tonight's picture was taken in May of 2009. Next to Mattie was his best friend from preschool, Zachary. These two were inseparable in school and despite Mattie's illness and compromised state, Zachary never skipped a beat. He was a devoted friend and I learned a lot of about kindness and commitment from watching these two friends. This photo was taken at the Mattie March, an event Mattie's care community planned and hosted for him at his school. The Mattie March set the ground work for the Mattie Miracle Walk that we run each May. You may notice that Mattie was holding a cup. Don't think there was fluid in that cup! Try caterpillars! Mattie would capture several tent moth caterpillars in Alexandria, VA and then bring them to the city so we could take part in the metamorphosis process! The caterpillars were part of our spring ritual. 

Quote of the day: We could never learn to be brave and patient, if there were only joy in the world. ~ Helen Keller

My caregiving role is multi-faceted. It isn't simply a bunch of physical tasks. That would be challenging enough, but there is an emotional layer to this role that is even more wearing than the physical stuff. Here is what today looked like so far for me:

• Got up, showered and dressed.
• Went downstairs, made breakfast for me, my mom, and dad.
• I vacuum the first floor and clean the kitchen (every morning). 
• Then went upstairs to get my dad in the shower, while I made their bed and cleaned my dad's bathroom.
• Once my dad is out of the shower, I dry him off, put lotions and powders on him and get him dressed completely (as he can't do any component of the this process).
• Then I put a gait belt around my dad and help him down the flight of stairs to the first floor.
• I get my dad to the breakfast table and he begins eating. While I start a load of laundry, throw out garbage from upstairs, and make my mom's morning tea. 
• Then I try to eat my breakfast quickly, so that I can help my dad with his morning journal and calendar.
• Right about then, my mom comes down. I help her into her seat and get her situated so she can start breakfast. 
• Today, my dad went to the memory care center. So as soon as he was gone, I prepped chicken for dinner tonight and cooked meats for Sunny. 
• Then did about an hour of Foundation work. 
• Folded and put away the laundry and got my mom moving so I could take her out to lunch. 

This account is just some of my activities from 6:30am until Noon. I will spare you the rest of the day. However, I thought my mom would like to go out to the Neiman Marcus Cafe for lunch. This is a place I can't take my dad, so I made a reservation yesterday for us. My mom wanted to try the salad special on the menu today, so we ordered it. She got about half way through the salad and then told me she hated it. By this point it was impossible to tell our server that my mom wasn't happy with the salad, because when she first checked on us, we told her everything was fine. Also over half of my mom's salad was consumed. 

Needless to say, for the rest of the lunch I heard my mom lament about the salad and then about her life. She hates our weather, doesn't like the fact that I won't let her drive, and she is tired of doing the same thing day in and day out. DON'T I KNOW IT! It takes a lot of patience and inner strength to hear her laments. I understand what she is saying and can appreciate how she must feel, but frankly I am too wrapped up in this at times to be empathetic. I need someone who will listen to me lament. 

Today I was able to absorb what my mom was saying and took a deep breath and tried to validate her feelings. But I also like to stick with reality. The reality, as I told her, is that she can't do anything independently anymore. I would love to put her on a plane and have her visit friends in Los Angeles or friends/family in New York. Unfortunately those days are long gone because my mom needs constant support and supervision. My mom mentioned to her physical therapist that she wanted to go on a cruise. The therapist handled it well, and also stuck to the facts. She basically mentioned to my mom that she is challenged with walking on a flat, stable surface. But on a ship, with constant movement, walking becomes even more difficult. I am not sure if my mom put two and two together, but basically I got the message loud and clear. Not that I needed the 411 on my mom's walking, but it is nice to know that I am not the only one who evaluates her and realizes she needs certain accommodations. 

Each day I wake up and I hope that I am given the strength, energy, and courage to manage the day ahead. This is my status and I take it one day at a time. 

Sunday, April 30, 2023

Sunday, April 30, 2023

Tonight's picture was taken in April of 2003. Mattie was a year old! Mattie was born to walk and run. In fact before he could he was very frustrated! He had no interest in sitting up or crawling! By a year old, Mattie started holding onto furniture and getting used to learning to balance himself and take a few steps (while holding on). Mattie did things according to his own timeline, and I learned to appreciate that about him! I remember years later, I took a photo of Mattie by this same coffee table. By that point he was towering over the table. We always got a chuckle out of comparing those two photos!

Quote of the day: The secret of getting ahead is getting started. The secret to getting started is breaking your overwhelming tasks into small manageable tasks, and then starting on the first one. ~ Mark Twain

It was another rainy day with thunder included! Mr. Sunny DISLIKES thunder intensely. It scares him. We know on these kind of days to leave the basement door open, because he tends to find his way down there for shelter! Sure enough..... there he goes!

Do you see the large wall on the right (in our family room)? It has been left bear since we moved in. Mainly because we can't agree amongst us what to hang in this space. Over the last month, I had an idea that I shared with the family. I want to work with a local artist to capture aspects of our outdoor landscape and create a composition of paintings. That will make the composition unique and it will be a meaningful memory to capture of this house. Everyone seemed to like that idea. So today, I reached out to Kim T. Richards. I met her at the Vale School House art show. This art show takes place in our community twice a year. In fact, last year, we bought two of Kim's paintings and they are located above the couch in this photo. 

A close up what 'At First Blush' and 'Friendship and Elegance!'

This weekend the art show was open again, and though I was scheduled to go with my mom, the pouring rain prevented her from going with me. So instead, Peter and I had a minute together to do something independently. I can count on ONE HAND how many times we have had such an opportunity since my parents moved in. 

While walking around the gallery today, we had an opportunity to chat with Kim and to discuss plans for our family room wall. In the process, two of Kim's creations caught my attention.... 'Wild Hope' and 'Be in My Heart.' Ironically these paintings weren't featured together! Nonetheless, my eye saw them together and we had them brought together for me to confirm my feelings. When we lived in Washington, DC, supporting local artists was the furthest thing from my mind. However, now that we are in the house, I want more unique things and I strongly believe in supporting the local artists. Kim will be working on getting these reframed for me, but as I told Peter these are my Mother's Day, birthday, and anniversary gifts wrapped into one. 

Meanwhile check this out! My friend Debbie gave me this lovely orchid last year for my birthday! I have been given many orchids over the years, but we have NEVER been able to get them to bloom a second time once their original flowers die and fall off. Peter has been studying up on orchids and found a window in the house that has right amount of sun and the right amount of food and water, and voila.... look at this second bloom!!!! 

Saturday, April 29, 2023

Saturday, April 29, 2023

Tonight's picture was taken in April of 2007. Mattie was five years old and the boys were outside on our balcony. This was a space we all loved, including Sunny. The tree you see on the right is an oak tree. That tree provided us with countless leaves during the spring season, when Mattie would collect caterpillars. The only leaves these things would eat were oak! Not a problem to find oak leaves in Alexandria, VA, where Mattie retrieved the caterpillars. It was much hard for us in the city and given that Mattie loved observing the metamorphosis process each spring (caterpillar to moth), I will always be grateful to this mighty oak! It provided many successful moth release parties on our deck! Of course the building in the background of this photo is the Kennedy Center. It was a wonderful experience to live in the city and I will never forget our time there. 

Quote of the day: Caregiving is a constant learning experience. ~ Vivian Frazier

I am very tired today. After taking my parents out for an early dinner, the drive home from Maryland did me in. I feel very car sick with all the stop and go traffic. Therefore, I am sticking to happy photos tonight. 

Peter bought all these canvas gardening bags and we are trying them out this year to grow all sorts of vegetables! So far the romaine lettuce is incredible and I look forward to our own cucumbers, onions, garlic, tomatoes, squash, and eggplants!

Two different types of green beans and tomatoes. 

Pops on color on our porch!

Peter knows I am a petunia fan. To me they are happy flowers! Peter planted a couple of planters today with Mattie Miracle colors!

Friday, April 28, 2023

Friday, April 28, 2023

Tonight's picture was taken in April of 2008. Three months before Mattie was diagnosed with cancer! I would never have guessed that Mattie was sick or how our lives were going to profoundly change from looking at this photo! Mattie LOVED being outdoors and though he was outside to help me water some of the plants, what landed up getting soaked was Mattie! This was of course intentional!

Quote of the day: A river cuts through a rock not because of its power, but its persistence. ~ Jim Watkins

It was another long day on the Farm! Both of my parents had physical therapy today. My dad's therapy was at home. After he completed his session, I got him into his recliner and let him rest. Meanwhile, my mom was napping while my dad had his therapy session. So I had to get her up again and I drove her to the hospital for her therapy session. The amount of driving and herding of people I do in any given day is remarkable. But after a while all of this can become tiring. 

Don't think while my parents are in therapy I get a break! Nope, I am either observing or participating in the sessions. Once my mom's session was over, I drove back home, let her freshen up, got my dad up and toileted, and then loaded them back in the car to take them out for an early dinner. Which amounts to another 40 minute car trip each way. 

After dinner was over and we got home, I helped my dad to his recliner. On the walk to the recliner he asked.... "are we eating in or out?" He did not remember that we literally just drove back from the restaurant after eating there for two hours! His memory is truly gone and the shell of a man that is left over is challenging to face. However, like when I provided care for Mattie, I don't dwell on the reality of the situation for very long. I instead remain focused on the task. I live in the present, in the here and now, and I do not like evaluating what tomorrow will or could hold. This was how I lived my life in 2008 to 2009, and I once again have adopted this philosophy. To me it is the key to survival. 

Thursday, April 27, 2023

Thursday, April 27, 2023

Tonight's picture was taken in April of 2008. It was the spring fair at Mattie's elementary school. It was a day I will never forget. Mattie was thrilled to be with his two best friends (Charlotte and Campbell) and together they rode the mini train around the campus. There were games, food, cotton candy, and the time to be together and to celebrate the end of a school year! I of course thought Mattie would participate in MANY more spring fairs. But cancer changed that reality! I am so glad I never missed an opportunity to get involved in Mattie's kindergarten experience, because in one short year we made many memories together at his school. 

Quote of the day: Start by doing what’s necessary; then do what’s possible, and suddenly you are doing the impossible. ~ Francis of Assisi

This is a painting my dad came home with yesterday from his memory care center. My dad claims to NOT be artistic and for over a year NEVER participated in ONE creative project at the Center. I assure you the Center does all sorts of fun projects and my dad has always refused to participate. I can tell what his class is doing each day because I have the schedule for each day he attends. 

When my dad came home yesterday we were all in SHOCK when he handed us this painting. Honestly if his name wasn't on it, we would have assumed he took someone else's art home! I joke NOT!

My dad has the tendency now to be part kleptomaniac. He takes home all sorts of things from the Center. Such as pencils, markers, pens, tampons, paper towels, books, exercise bands, other people's class work and the list goes on. Peter and I make a pile of all the things he brings home each week and then we return it to the Center. 

When we asked my dad why he decided to try painting, he truly had NO answer. All I can deduce is there was a stencil of this bird house on the canvas and with that he decided to paint it in. But here is the curious thing! My dad's chair at our kitchen table faces this handmade blue bird house. My dad sees this particular view every morning. 

Look at this actual birdhouse and then look at his painting? To me there are great similarities! You should also know that we have MANY cardinals in our backyard and my dad loves watching them. 

When I look at his painting above, it is fascinating to me that he chose to paint the house a similar color to the one in our backyard and he featured a cardinal on top of his house. Just when I think NOTHING is being absorbed, this painting seems to tell me more. 

The joke I have going with my dad is he is the next Grandma Moses, the American folk artist who started painting at age 78! He got a chuckle out of that. I even wrote my dad's memory care center today to praise them for getting him involved in art yesterday! I wanted to alert them that he is proud of his masterpiece and therefore seems more willing to get involved in other creative projects. Needless to say, I am in the process of framing my dad's first piece of art! 

Wednesday, April 26, 2023

Wednesday, April 26, 2023

Tonight's picture was taken in April of 2008. That day, I spent some time in Mattie's kindergarten classroom and got to see his Writer's Workshop material. Ironically Mattie HATED Writer's Workshop. This was where the children would generate stories and illustrate their work. Mattie liked the illustration part, but wasn't confident in writing and reading. He was struggling to spell and generate sentences. I have no doubt he would have figured this out in time, but unfortunately time was not on Mattie's side. 

Quote of the day: All the art of living lies in a fine mingling of letting go and holding on. ~ Havelock Ellis

It was another long day here. I got my dad off to his memory care center and then I took my mom to her physical therapy appointment. Regardless of what any one says, I am quite certain she has a neurological issue, which goes beyond just having dementia. She has trouble balancing, is wobbly on her feet, in my opinion she shuffles when she walks, and her neck is bent in a very awkward position. I have to constantly remind her to lift her head, otherwise she looks like an upside down letter L. 

Truly when I reflect on what I do in any given day, it makes my head spin. Of course on top of balancing their every need, this is fundraising season for the Foundation. So I always feel stressed, never knowing..... will we raise the funds we need or not? We have been at this for 14 years and I would have hoped by now I could have figured out how to get a steady stream of income for the Foundation without having to fundraise. I still live in hope that I will achieve this one day, but it most definitely won't be while caregiving full-time. 

Please check out our Walk website and get involved:

https://2023.mmcfwalk.com/walk2023/Campaign/Details

Our Raffle is also open! Tickets are only $5. All proceeds go toward our cause:

https://2023.mmcfwalk.com/walk2023/Raffle/Details

Tuesday, April 25, 2023

Tuesday, April 25, 2023 -- Mattie died 708 weeks ago today.

Tonight's picture was taken in April of 2008. This was typical of Mattie! He loved examining how things worked, how parts went together, and he especially enjoyed taking things apart and putting them back together again. I am not sure if Mattie ever saw a mechanic work, which was why it fascinated me that he created a car lift out of tinker toys and was checking out what was underneath the remote controlled car. It wasn't unusual for Mattie to pull out screwdrivers from our tool drawer and use them. He started this kind of stuff at age 2!

Quote of the day: No one cares how much you know, until they know how much you care. ~ Theodore Roosevelt

It is 5pm, and don't even ask what I did today! It was another blur of a day, of non-stop chores, driving around, and caregiving tasks. In the midst of this dysfunction, I was on a conference call with our research team. Honestly it is very humbling to be on this call, because it reminds me on a grand level that my life is NOT normal. These women are working, focused, and getting things done. 

Unlike them, I feel exhausted, scattered, and at times hopeless. My days are intense and given the nature of caregiving, not likely to improve. The challenges with caregiving is that the tasks are constantly evolving, because the needs of  older adults only magnify, not lessen. 

The research team tasked me to begin pilot testing the family caregiver survey we designed. When on the call, I freaked out inside about the stress of one more task in my day. However, after taking a deep breath, I addressed this task and started reaching out to my network. It is easy for my to get flustered and overwhelmed now very easily. Mainly because I live with chronic stress, have no down time, and each day I am expected to operate at a high level, responsible for two people who need support. 

What I learned today is I have to take it one task at a time. That I have the ability to figure it out, and not to forget that unlike the research team, I am a survivor in ways they can't possibly personally know.