Saturday, February 28, 2026

Saturday, February 28, 2026

Tonight's picture was taken in March of 2007. That week we visited Key West, FL with Mattie's grandparents. Along our journey we stopped at this little aquarium. We were lucky enough to take part in a hands-on program conducted by a naturalist. Mattie LOVED hands-on activities and though the opportunity to touch a baby shark was in front of us, in typical Mattie fashion, he had me try the experience first. If I was okay with it, then he would deem it safe for him to give it a try. Mattie and I were a tag team extraordinaire! Now keep in mind that touching a baby shark would not normally be something I would do, but with Mattie my comfort zone was pushed beyond the norm. 

Quote of the day: The way I see it, hard times aren't only about money, or drought, or dust. Hard times are about losing spirit, and hope, and what happens when dreams dry up. ~ Karen Hesse

Today maybe the first day that my nasal passages did not smell like cigarettes all day. It has been a month of various health struggles for me. When I saw my doctor on Thursday, he enlightened me that I burned my nasal passages from inhaling cleaning chemicals that I used during the Norovirus disaster in my house. I honestly thought I was never going to be able to smell again. But the doctor is right.... it takes time to heal. I am seeing progress! 

It was a day of non-stop cleanup of my dad, which made it challenging considering he had a physical therapy session this morning. After his session was over, and he was relaxing in his recliner, I encouraged my mom to take a walk. She has wanted to walk the neighborhood for a while now, and though I would like to do this with her, I can't leave my dad alone. So I got her down the driveway (which is hilly) and away she went. She was thrilled to get outside, to be in the sunshine and walk. Typically I would be hesitant to let her walk by herself, but since there is no snow on the ground, it was a beautiful day, and she knows the loop she does with her physical therapist, I figured it was important to empower her to do this. She was thrilled!

While my mom was walking, the house was quiet. It gave me the time to read and review a research paper. I am grateful to be a part of a research team that is working on the implementation of the Psychosocial Standards of Care for Children with Cancer and Their Families. So far this team has successfully published three papers and we have three more in the making. Honestly when my parents are home and watching TV, I can't focus or concentrate on a thing. But with the house quiet today, I was very productive and reviewed the entire paper and supplied commentary. It was a great feeling!

Later this afternoon, I forced myself outside and into the backyard. I have a big winter clean up to do, which I started the other day. Today I swept up leaves, branches, and debris all over our stone patio. Believe it or not that alone took me 90 minutes. About a week ago, I wondered whether I would have the energy to do clean up and eventually planting for the spring, but today illustrated to me that.... yes I have the energy and being outside is therapeutic for me. 

Friday, February 27, 2026

Friday, February 27, 2026

Tonight's picture was taken in March of 2007. Mattie was four years old and that spring break we took him with his grandparents to Key West, FL. Along our journey we came upon this dinosaur. But look closely, as the structure was comprised of found metal pieces. Mattie loved it and he posed for a photo next to it giving us his dinosaur impression! 

Quote of the day: And I felt a deep sense of embarrassment about it. James was the one who had an affair, who walked out, but the shame had become mine. I had made it mine, I was an abandoned wife, a woman rejected by her husband, a woman who had failed to keep her family together. I would be the outsider among all married people, all the intact families, all the women who were wanted by their husbands. ~ Belle Burden

If you read the blog posting from February 20, then you know I was gifted the book, Strangers A memoir of Marriage. Given the chaos of my life, I can read this book in bits and pieces. Today I picked it back up while out with my mom and I got to read several more pages. The book does a good job at describing the plight of being divorced. I remember when I was in graduate school, it was clear that divorce is a life altering experience and can be traumatic, but back then, I was too young and too naive. Mainly because marriages in my immediate family are intact, and long term. I never witnessed someone I loved go down this very painful path. I think there are aspects of divorce that can be easier for some couples versus others. Perhaps couples who have a history of issues, problems, fighting, and difficulties, or couples who mutually decide upon a divorce, can face and cope with the process slightly easier. 

In this book, the author faces a separation during the height of COVID-19. She describes how social distancing enabled her to avoid people, to avoid conversation and to have to make small talk at parties and get togethers. Of course on the flip side, with social distancing, she was also unable to seek the support of trusted family members and friends to help her along this journey. I heard what she was saying and I would say that my intense caregiving is equivalent in a way to the social isolation associated with COVID-19. My days are full of tasks, chores, and crises, making it impossible to seek social support. 

But here's the thing...... does social support help? I think it depends on who you ask! If you were to ask me, the answer would be NO, NO, and NO! Why? Well I learned this first hand when Mattie died. When you are facing a crisis, the crisis scares people! I can't tell you how many families avoided me like the plaque when they saw me in stores. I will never forget families practically running through the aisles to avoid me. At the time it hurt, I felt ignored and an outcast. Now with more distance and years behind Mattie's death, I realize that they were running for various reasons.... my situation frightened them, they did not know what to say to me, and perhaps they thought that talking about Mattie's death would make me sadder (if that was at all possible, which it wasn't). Though I am aware of the fact that a divorce is very different from child loss, there are some similarities with all crises.... they make people uneasy.

In addition to crises making people uneasy, at the end of the day, no matter how much support you have.... YOU are the ONLY one sitting with the thoughts, feelings, and issues. These things do not belong to anyone else and therefore it is easier for others to move on and perhaps be confused as to why you can't! That said, I would say this book has been helpful for me because when I wonder why I am floundering and face a whole host of feelings and thoughts almost two years after my separation, I can now see that I am not alone. This is the natural reaction of feeling deeply hurt and whose future has gone up in flames. Some day when I am no longer caregiving, I will not only be facing life without my parents, but I will have to face my divorce head on. Right now caregiving enables me to put the full ramifications of this nightmare on hold. Which is a mixed blessing.  

Thursday, February 26, 2026

Thursday, February 26, 2026

Tonight's picture was taken in February of 2003. Mattie was ten months old and that day we purchased this walker for him. Though walkers weren't encouraged by pediatricians, we ultimately got one because Mattie was desperate to be on his feet and walk. As soon as Mattie was lifted into "tot wheels," look at his face.... it said it all! Sheer joy and happiness to move and have independence!!!

Quote of the day: For me, it’s not necessarily interesting to play a strong, fearless woman. It’s interesting to play a woman who is terrified and then overcomes that fear. It’s about the journey. Courage is not the absence of fear, it’s overcoming it. ~ Natalie Dormer

It was another early morning in my house today, as both my mom and I had doctor appointments. Of course before that could happen, I had to get my dad to his memory care center. Thankfully my mom's appointment went smoothly and then I saw my own doctor regarding my sinus infection that I have been struggling with since January. 

Thankfully I no longer have an infection, but here is what I learned today. My doctor feels like I was struggling with three things simultaneously. A sinus infection, norovirus, and a reaction to inhaling chemicals. What chemicals? Well you may recall that my dad had Norovirus. It was such an intense illness, that it landed up soiling their bed, box spring, and the floor! It took me a week (while my dad was hospitalized) to clean these items and air out the room. Though I had a fan going constantly for a week, I clearly inhaled a ton of white vinegar and Clorox. It never dawned on me that I burned my nasal passages.

Ironically when the doctor asked me if I inhaled chemicals or was around chemicals, my natural reaction was NO! But then we started to dissect my routine. That is when it hit me...... yes I was around constant cleaning chemicals for a week! As it wasn't a one day cleaning process, I used these items daily, sometimes multiple times in a day to get things clean. I have now learned my lesson, that I have to be careful, as I am still paying the price. My ability to smell has been greatly affected and the doctor feels that in time, my sense of smell will return and that this phantom burning cigarette smell that I constantly face will dissipate. 

While I was at the doctor today, one of my friends wrote to me and she calls me a "lightning bolt." She said, "how on earth you manage to run everything that the Foundation incorporates and care for not just one but two parents, and let's not even talk about the house, laundry, gardens, getting things fixed and all the trillion other jobs you do is beyond me." As I told her.... it is beyond me too! Yet here I am. It points to tonight's quote, as I do live in constant fear or of being overwhelmed, yet hiding from these feelings serves no purpose. They are real, and so many of us face these feelings for one reason or the other, and I think it is important to call them out, because I believe there is strength is highlighting the reality as well as exploring the journey to overcome the reality.  

Wednesday, February 25, 2026

Wednesday, February 25, 2026

Tonight's picture was taken in February of 2003. Mattie was ten months old and was invited to a birthday tea party that day. The children were asked to get dressed up, as if they were going for high tea. So Mattie was wearing a cute shirt and a blue cardigan. Naturally he had no idea why he was getting dressed up, but he was a good sport and put up with the request. I snapped this photo before we headed to the party. When I look at this photo now, it is truly impossible to believe that all I have left of Mattie are photos! 

Quote of the day: A day of worry is more exhausting than a week of work. ~  John Lubbock

It was another 5:30am rising today! I have a running joke in my head as every neighbor of mine goes to bed early. I typically am the last one up on the street, based on house lights. Yet many times I am also the first one on the block who is awake. It speaks to the chronic exhaustion I have, as I operate on very little sleep. Trying to herd my parents out the door at 9:20am today for a doctor's appointment, was almost impossible! 

We see my parent's rehabilitation physician every three months. Like all of my parent's doctors, this doctor today is also very aware of how much I balance. However, these doctors don't know the whole story. They don't know about the loss of Mattie and they most definitely do not know about my separation and divorce. Instead, they assume that I have a spouse at home helping me! Managing the full-time care of parents is hard, but add to it a divorce and it is truly a diabolical combination. Any case the doctor wanted to know how I was doing today. I commented to him that I am dealing with a painful flair up of costochondritis (inflammation of the cartilage connecting the ribs to the breastbone). It never dawned on me but while talking to him, we concluded that my flair up is from trying to lift my dad up out of chairs and bed. I am not sure why I did not put two and two together, but when the doctor saw my dad's physical decline, he quickly assessed that I must be helping him! 

Honestly there are some days when I say to myself..... how much more of this can I do? This is a heavy question, because if I am not caregiving, that will mean that my parents are no longer alive. Then what? Then I am alone and the reality of being divorced and emotionally hurt will become a 24/7 nightmare. Since I couldn't sit too long with these feelings today.... outside I went. I spent an hour picking up downed branches and limbs in the yard from the horrible winter. I have a ton of work ahead of me this spring, but I had to start somewhere.  

Tuesday, February 24, 2026

Tuesday, February 24, 2026 -- Mattie died 834 weeks ago today.

Tonight's picture was taken in February of 2008. That day Mattie worked hard on creating this prop plane out of tinker toys! As you can see, he was very proud of his creation. All I can say was life was never boring with Mattie Brown! 

Quote of the day: You are never too old to set another goal or to dream a new dream. ~ CS Lewis

So if you have been following along on the blog, then you know I had countless fire trucks here on Sunday night during a snow storm and then last night, I saw flashing lights again! I naturally panicked. I thought the fire in the neighboring street reignited. I am not sure what I find more stunning..... that no one else on my street was aware of these flashing lights, or that if they were aware of these lights they were not interested in getting involved!

Last night, I was in my pajamas, but I put my boots and coat on and literally walked up the block to find out exactly what was going on! When I got there I interacted with two neighbors... a man who was walking his dog and the actual person who called the paramedics. Turns out someone fell outside on black ice and she broke her leg. But you want to know what? The woman who called 911 was thrilled to talk to me and was so happy someone took an interest and wanted to help! So now I have met a new neighbor who I never knew before! Perhaps it is just me, but if I see a problem, I want to know what the problem is and I want to know if I can be of assistance. 

This morning, I got up at 5:30am. I will need to do this for the next several days, because of back to back doctor appointments. Today my dad was scheduled to see the cardiology nurse who is working hard at stabilizing his heart condition. She is an absolute love, knowledgeable and professional. While waiting for her, the room had a computer screen that flashed tonight's CS Lewis quote. Somehow reading it made me smile, mainly because I consider the best years of my life are over. 

The nurse was very pleased with my dad's progress. But then she spent about 15 minutes chatting with us about personal things. I learned that her husband is in the Coast Guard and as such she has been stationed all over the place. Her son is living in Brooklyn and she is originally from North Carolina. That is where she would like to go to retire and she and her husband are talking about their next chapter together. I am not sure what happened in my mind, but the notion of North Carolina and retirement flipped a switch. Some times in my mind, I still think I am married. I know.... crazy as that sounds. Legally I am not married, but morally I am through the Catholic Church. When someone is in your life for 35 years, it is the natural thing to think of them and turn to them with thoughts, feelings, and memories. I can't tell you how many times we visited the beaches of North Carolina together and I always imagined that in retirement we would travel to different place and have adventures together. Not having my other half has robbed my future and instead has only left a complete blank, a hole, and emptiness ahead. I feel lost and the grief from this loss is indescribable. Any case, the nurse's dialogue today sent me for a tailspin. You wouldn't know if by looking at me, as I hold all my angst inside.

Later today, I had to interface with PayPal. The Foundation has a PayPal account, however, the account was not associated with my email address and cell phone number. Therefore I couldn't access it! Despite my best attempts, there was nothing I could do to access this account. PayPal sent me instructions for what I needed to do, which meant writing a formal letter and submitting copies of my social security number and my driver's license. I wasn't THRILLED having to do it, but considering it was for the Foundation I did it! PayPal said they would contact me in a week to ten days after receiving the mailing. They didn't so I called customer service today! When I tell you I was screaming for an hour, I am NOT KIDDING. Though I wrote a formal letter, they would not change the email and phone number associated with the account. Instead, they kept saying that I needed the code sent to a phone number I did not have access to. Honestly it was mind numbing. After an hour of screaming, after mailing countless documents to them, at the end of the day, I shut down the Foundation's account and then created a whole new PayPal account today. A thorough waste of time, which could have been averted if they knew their own system and policy!  

Monday, February 23, 2026

Monday, February 23, 2026

Tonight's picture was taken in February of 2003. Mattie was almost a year old and that day he received a toy that was like a drum. However, it played music, did a light show, and allowed Mattie to beat along with the music. As you can see from this photo..... Mattie was down right fascinated with this toy!

Quote of the day: Don't be afraid of being scared. To be afraid is a sign of common sense. Only complete idiots are not afraid of anything. ~ Carlos Ruiz Zafón

Last night, as it was snowing, I happened to look out my window. Up the block, I could see red flashing lights. I thought it was an ambulance. So I immediately contacted my neighbor to see if something was going on, or if she or her husband were ill. Fortunately she was fine, but as she walked downstairs and looked out her window, she told me she saw a fire truck. Literally a firefighter was using our hydrant and was running the long hose through our street, over a fence onto the neighboring street. Why? Because there was a huge house fire!

As I continued to pan around our house, I then saw this through my windows!!! Do you see all the red??? The whole street behind us was lined with fire trucks. I am talking BIG trucks with ladders that went flying up into the air! I immediately alerted all the neighbors around me and some tried to walk over to the next neighborhood to determine whether this was contained or whether we were in danger as well. I feel like I have become the safety officer for my street. Neighbors know that I report everything.... people coming onto properties who shouldn't be there and all other issues that arise! Given my heightened state of existence, I find neighbors understand where I am coming from, and certainly fire makes anyone uneasy. 

My heart goes out to the owners of the house on fire and of course the water damage it sustained from trying to put out the blaze. I am grateful all the homeowners and the dog were rescued and are safe, but imagine your belongings, your memories, and things you hold dear up in flames? I honestly can't even wrap my head around this, and if we had to evacuate, I truly would be beside myself with two 90-year-olds in tow and not having the help of my other half. Nothing puts your life into focus faster than a crisis. Frankly I am sick of living in crisis. 

Sunday, February 22, 2025

Sunday, February 22, 2026

Tonight's picture was taken in February of 2009. Mattie was home between cancer treatments and eating a food of choice.... a donut with vanilla frosting! Mattie loved water play and since he was unable to go into a bathtub with his broviac catheter, I brought the water to him in a big pot. Just like in the bathtub, Mattie threw many of toy cars and things into the pot and the play schemes just unfolded from there! Just loved that smile.

Quote of the day: The purpose of human life is to serve and to show compassion and the will to help others. ~ Albert Schweitzer

Over the course of this last week, practically all of our snow from January's storm had melted. It was a wonderful sight to see grass again. But by the end of the day today.... we got hit with another storm and as you can see we are back to everything being white again. What a horrible winter.

Typically we go out for brunch on Sundays. I had to determine whether this was going to be a safe trip today given the pending storm. But I tracked the storm and figured that the snow wasn't going to be sticking until 5pm or later. So we went out earlier today, in order to be back home by 4pm. By the time we left the restaurant however it was sleeting. One of the managers helped me. He held onto my mom and used his umbrella to escort her to my car and I managed my dad. I did not ask him to do this, he just did this on his own accord. To me this speaks volumes about his character. I am so used to doing everything on my own now, that when someone shows me an act of kindness, it makes me pause and feel thankful. 

The notion of shoveling snow is sickening but we have two doctor appointments tomorrow. One of which is my appointment, to get follow up help regarding my never ending sinus infection. I will have to scramble tomorrow morning to figure out whether it is safe to drive and have my parents walk around outside.