Saturday, May 6, 2023

Saturday, May 6, 2023

Tonight's picture was taken in May of 2009. This image was ironed onto a white cape. This cape was designed for Mattie by his art therapists. The cape was meant to be worn at the Mattie March, an event Mattie's support community planned for him. Mattie's therapists captured his image from a photo we took of him at the circus. Mattie thought this 'Super Mattie' cape was fantastic and throughout Mattie's cancer journey, art and creating were incredibly positive outlets for all of us. 

Quote of the day: Communication is merely an exchange of information, but connection is an exchange of our humanity. ~ Sean Stephenson

This morning, after I brought my dad downstairs to have breakfast, the doorbell rang. I looked at my watch. It was before 10am, so I knew it wasn't my dad's physical therapist, who was coming at 11am. I left my dad at the breakfast table and went to the door. At the door, I found a neighbor of mine. She was worried that she hadn't seen me out and about for a while and wanted to check on me. I invited her inside, and we chatted together while we were having breakfast.

Before my parents moved in, I lived in this house for four months. During those four months, I went outside and walked Sunny daily. I had a far more active and social life. I am grateful for my two neighbors who do visit with us, and have some understanding for my situation and isolation. While my neighbor was talking to me, my dad was writing and passing me notes. On the notes it said.... WHO IS THIS WOMAN?! Mind you I told him constantly that this was our neighbor, who he has met many times before. Nothing sticks with him! The reason my dad was passing the notes to me was because this was his way of saying...... she's disrupting his morning routine and doesn't want to hear the talking!  

Dealing with my dad is like working with a child. The focus must constantly be on him and his needs. The rest of the world is blocked out. Which is why it is virtually impossible for me to have a social life. I tried having friends over and honestly it is such a juggling act, I am more frazzled than if I stayed alone. But that said, I enjoyed interacting with another human being today and I love my dad's physical therapist. She brought me a home made pop over that she bought at the farmer's market today. I thought that was so kind to be thinking of me on a Saturday morning. 

I wish I could share just how beautiful our backyard is this spring! Peter has been tending to trees, shrubs, and plants throughout the winter and early spring. His nurturing, feeding, and plantings are simply stunning. The backyard looks like a botanical garden. 

I walked my neighbor through the backyard today and she thought it was breathtaking. I am so glad that Peter has this outlet, especially when he was looking for a new job. I think between caregiving stress and not having a job, there was inordinate pressure. 

It is amazing what his therapeutic outlook has produced. It is a gift to all of us. 

Friday, May 5, 2023

Friday, May 5, 2023

Tonight's picture was taken in May of 2009. As you can see it wasn't a very happy moment in time. Unfortunately Peter and I have many of these moments filed in the back of our minds. Sure it maybe 14 years ago, but some things are unforgettable. I would say seeing your child in pain, depressed, and sick 24/7 was very hard to take emotionally. Peter and I tried extremely hard to be positive and in control around Mattie. Which was needed as there were always various moving parts around us and we had to have it together, because we were constantly making life and death decisions in Mattie's care.... not just on a weekly or monthly basis, but in many cases, hourly. 

Quote of the day: The best way to find yourself is to lose yourself in the service of others. ~ Mahatma Gandhi

Gandhi's quote has always resonated with me. I would say that I feel most useful and alive, when I am helping others. Not just doing a task or a chore, but helping someone in a crisis or who is emotionally overwhelmed. Honestly since Mattie died, I view every issue through the lens of loss. If you evaluate any problem someone sets before you, I bet that you will find a hint of some kind of loss attached to it! Think about it!

Today was another ridiculous day of being up at 5:45am, balancing my parents needs, and juggling schedules and lots of driving. I took my mom to physical therapy today. We drove home and I thought we would have an hour before my dad was to come home. My thinking was that I could use that hour and catch up on emails and do some work. I was really looking forward to this hour of undisturbed time. FORGET IT, not in the cards for me. 

When I walked into our house, we could hear Peter talking. At first I told my mom that Peter must be on a conference call. But as I kept listening, I realized the person he was talking to was talking back and I could hear her. So I began to walk around the house and indeed I found Peter and our lovely neighbor. 

Our neighbor was having a bad day and reached out to Peter. I will spare you the details because this isn't my story to hear. But the point is, I sat down and listened to our neighbor and what I quickly realized is YES I am a mental health provider. I haven't lost that art form and skill. I can track multiple threads a person is talking about and I am good at trying to help slow down the conversation and process what is being said in order to stabilize how one is feeling. In reality we all need a sounding board, someone we can trust and confide in, without being judged. I am glad we could serve in that role today and since our neighbor moved in, we connect daily or weekly. Which for me is important, because I live a very socially isolated existence. She thinks we are helping her, but what she doesn't realize is she is HELPING us! 

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!!!!