Tuesday, January 28, 2025

Tuesday, January 28, 2025 -- Mattie died 799 weeks ago today. 

Tonight's picture was taken in January of 2003. Mattie was 9 months old! As Mattie grew from a baby to a toddler, his facial transformation occurred. In the sense that he began looking just like me! Mattie had my personality and his ability to read people. We related to each other like two peas in a pod. Mattie loved his walker, aka... Tot wheels. He would zoom around our first floor in this thing. He loved being in control of his movement and he particularly loved following me around. In this particular photo, Mattie migrated into the kitchen on his own. When he turned his Tot wheels around, there I was, snapping this photo. Which was why he had this wonderful look of surprise! 

Quote of the day: Life isn’t about finding yourself. Life is about creating yourself. ~ George Bernard Shaw

George Bernard Shaw's quote is brilliant. It truly jumped off the page at me tonight because on any given day, I feel LOST. I am floundering trying to figure out my identity. I am no longer a mother and I am no longer a wife. Two roles that I valued and defined me for decades. But what happens when all you held, valued, and loved disappears? Well I could say this leaves me trying to figure out who I am, but I like Shaw's notion much better. I am not finding myself, as my core values are and will always be my foundation (they haven't changed!), but with great loss and trauma, I believe I have two choices...... give up altogether or try to find a way to integrate these horrors into my life and use them to further create and develop myself. NOW I SAY THIS with the full reality that this is VERY, VERY HARD to accomplish! It is hard to do when disillusioned, confused, deeply saddened, and at times bitter and angry. 

I have to say, as a single adult, I have been FORCED to be creative and to develop sides of myself that I do not naturally gravitate to.... so perhaps this is creating myself? But I admit, I am TIRED of having to keep creating myself! Perhaps that is part of life, but I long for stable, consistent, and foreseeable! 

Today was another winner of a day! Truthfully, I long for a boring and simple day! After dropping my dad off at his memory care center, my goal was to do some Foundation work to begin setting up for our Virtual Walk in May. IT NEVER HAPPENED! Instead, I logged onto my computer and got alerts! You want to see Vicki panic.... give her a technology issue! Even now, hours later, I am still agitated from this morning! The alerts I was getting had to do with memory integrity and incompatible drivers. I had this issue months ago and I was able to correct it by doing several Windows updates. But today, nothing I did, corrected the situation. So what did I do? Literally I could have walked away from the computer, but I didn't. Instead, I did one of the things I had committed to doing for myself in 2025, and that was to create a Geek Squad account and membership! I want access to technology help 24/7! I will no long continue to put myself in this panic mode, instead, I want people who can help me when I need help! 

I have delayed contacting the Geek Squad, because I truly was nervous about the whole thing. But I overcame this fear today, established an account, and worked with an advanced technology tech remotely for two hours, as he evaluated and fixed my computer. So in the month of January, I have conquered figuring out how to pick and purchase individual health insurance and now I have conquered my technology phobia and found a resource to assist me. That is two big things down. I have other things on my to-do list, but truthfully I have to celebrate the small things. 

Now I wish that was where my day ended, forget it, I should be so lucky. My actual morning started with my driveway being halfway blocked by a contractor who works for the electric company. So I had to address this right away, as I never want my egress blocked in any way. I noticed one of my neighbors was outside talking to the electric company contractor, so I decided to walk out and see what was going on! THANK GOODNESS I DID! I learned that the electric company was planning to put a big transformer box practically in my front yard. Mind you I knew the electric company was going to do work in our neighborhood, as I met the lead manager several weeks ago. However, NO WHERE in our conversation did he mention a transformer being installed or its location. He only mentioned conduit work. When I learned what was going to happen, I literally thought I was going to burst a blood vessel! Two of my neighbors came out to discuss this issue with the electric company's contractor and in turn we learned that he is an absolutely lovely individual who understood our concerns. Needless to say, I came inside and both emailed and called the electric company lead who

is overseeing this project. Seriously I was so insistent, I pulled him out of a conference session to discuss this issue. The saga will continue tomorrow. I understand the electric company has to do work, but when this work has a direct impact on me, I feel as a property owner I should have been included in the process. In any case, look at the huge piece of equipment parked on my front lawn? 

Literally between the electric company and technology issues, I was working from 10am to 3pm. At 3pm, I had to take my mom out for tea and a snack! But of course, there is never any peace. The nurse at my dad's memory care center emailed me and told me that my dad had a bad cough, lots of phlegm and needed to be evaluated for flu. She then asked me..... didn't you notice he had a cough at home?! The answer was NO! He went to the center well! Any case, I did take my mom out for about an hour and while having tea, I booked my dad an appointment at our local urgent care center. At 5pm, we walked into the urgent care center, they gave him COVID and Flu tests (both negative) and they even gave him several chest x-rays because the nurse heard crackling in his lungs. My dad is SO hunched over that it is virtually impossible trying to get a good chest x-ray position for him. Me and tech worked on my dad for thirty minutes. The tech was a love! All my dad's x-rays were clear! No pneumonia. So truly I have come to the conclusion that this urgent care trip was a wild goose chase, which is what I suspected to begin with! All I can say it today was just too much stress for one person! When will it get easier? When will I have a crisis free day? There are no answers and frankly I no longer hope for the unobtainable. 

Monday, January 27, 2025

Monday, January 27, 2025

Tonight's picture was taken in January of 2009. Mattie was in the midst of a physical therapy session. The session was taking place right in the middle of the pediatric intensive care hallways. That day, Anna (Mattie's PT) introduced him to a rear facing walker! We had tried Mattie on a regular front facing walker, and he was frightened as he thought he was going to fall backward. The fact that the rear facing walker provided support to his back, he psychologically felt more safe. This was a big deal that Mattie was taking a few steps that day! We all felt victorious! But you can see Mattie's wheelchair was right behind him, because being on chemotherapy, he did not have the endurance to walk. In fact, after Mattie's limb salvaging surgeries, he never walked independently again.  

Quote of the day: If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward. ~ Martin Luther King Jr.

The past couple of years, I have experienced one loss after the other. In December of 2023, my primary care physician, retired. I have been her patient since I was in my late twenties. Therefore, we have been on a long journey together. She is my age and decided to retire early in order to move and live closer to good friends. She never married and doesn't have children, so she is very cognizant of her future, with the understanding that we NEED MORE support as we age, not less. Nonetheless, I view her retirement as a big change for me, because this was someone who knew my medical history and could speak confidently about it. I do not like losing people who are solid memory keepers for me. I will never forget when Mattie was a preschooler, I took him to one of my medical appointments. When he saw my doctor, his immediate comment was.... she's pretty! Keep in mind that he was comparing her to his pediatrician, who was a seasoned professional. Any case, when Mattie died, I shared that cute story with my doctor. We both reflected on that innocent moment together and smiled!

On top of losing my doctor, I have also lost my hairstylist. I have been going to this same woman since my twenties. She was the kind of talented individual where you could show her ANY photo of a hairstyle and she would know how to do it. This is an example of one of the many updos she did for me over the years! When Mattie died, Celina began volunteering her time and her whole family's time at our annual awareness walks. So she was committed not only to me as a professional but as a supporter of Mattie Miracle. 

When I think about all my losses and I can't help but reflect on the list of what I have endured just since 2021. They include: 

• Moving from Washington, DC to Virginia (this entailed saying good-bye to Mattie's home, and packing up and donating many of Mattie's things)
• Renovating our house, which was stressful, because months later I moved my parents in
• Moving my parents from Los Angeles to Virginia, which entailed packing up their house, making donations, and getting them across the country by myself
• Caregiving full time for both of my parents
• Managing multiple hospitalizations for my dad
• Sunny dying
• Getting divorced
• My doctor retiring
• My hairdresser retiring

Maybe this doesn't sound like a lot, but to me it is truly overwhelming. Today, I took my mom to Washington, DC, as we were both getting our hair cut. Though my stylist retired, I still go to the same salon, as I have known the owner for decades. I am not a person who likes getting her hair cut. Therefore, I rarely do it. Try once or twice a year at the most. Today, my new stylist had a chat with me. She has encouraged me to take better care of myself, and wants me to get my hair cut every four months to try to restore all the damage I have done to my hair because of lack of maintenance. I acknowledged what she said, and let that sink in. Truthfully I am so focused on caring for everyone else, that my needs typically do not make the list. Then given how I am feeling, my natural reaction is.... who really cares what I look like? 

While at the salon, I also got a manicure and pedicure. At times, I can feel a panic attack coming on when sitting still, because I am anxious about everything these days. But the manicurist, is the sister of my former hairstylist. Yes, I have known all these women for years! In any case, she was talking to me about her outlook on life. She was saying to me that we are all put on this earth for a mission. We all serve an important role and purpose. She has had a hard life, but her example to me was she was supposed to struggle so that she could be in her professional position now, which has enabled her and I to be connected with one another. Through our connection we help and support each other. Meaning, her struggles were stepping stones to where she is today, and she uses those struggles to talk and help other women in her life. I am not doing justice to her words, but truthfully she made me pause. 

She told me that there are so many things we can't control. Like the weather for example. Therefore, if she knows it will rain, she brings an umbrella, if it will be cold, she wears a coat.... well you get the picture. The moral of the story is there are many things in life that we can't control for or mitigate. But how we deal with them, react to them, and learn from them, are the keys to survival. Who knew going to get one's hair and nails done could possibly be a lesson to manage an existential crisis!?

Sunday, January 26, 2025

Sunday, January 26, 2025

Tonight's picture was taken in January of 2009. I will never forget this day. Mattie completed a long bone scan assessment. To prep for a bone scan, Mattie wasn't allowed to eat or drink anything for 12 hours. His bone scans would last for about two hours. Sitting still for this scan was not easy for Mattie, especially since the machines were daunting (both because of sound and claustrophobia). That day, Mattie's incentive for completing the scan, was to go to a restaurant on the hospital campus with his psychosocial care team and have shrimp! The restaurant had a hibachi table, and Mattie loved watching the chef cook and toss shrimp up in the air. You may not be able to tell from this photo, but Mattie was actually smiling, laughing and hobbling around the hibachi table in excitement!   

Quote of the day: Don’t assume I’m weak because I have panic attacks. You’ll never know the amount of strength it takes to face the world every day. ~  Unknown

I has been another winner of a day! It is beyond exhausting being the point person for everything in my household. I manage so much stress on my own. Sundays should be a peaceful day, and I convinced myself that I was NOT going to do any computer work today, in hopes of experiencing less anxiety and stress. Forget it, it just isn't possible in my house. 

Every Sunday, I take my parents to brunch. We did not go last weekend because of snow, so today I was looking forward to not cooking. Before I leave the house, I always make sure that my dad uses the bathroom. However, ten minutes into driving to the restaurant (which is about thirty minutes away), I could hear my dad deep breathing and his head bobbing up and down! I know exactly what that means. It means he has to go to the bathroom ASAP. Truthfully, when he gets like this it is so stressful that I have to determine.... do I turn the car around and go home, or can I make it to the restaurant? I decided to continue driving. As soon as I got to the restaurant, I literally parked by the front door, put the blinkers on, helped my parents out of the car, and went straight in with my dad to the bathroom. By the time I got him there, he needed to be completely changed. During moments like this, I ask myself, what on earth have I done to have a life that has been completely decimated? 

After I cleaned him up and sat him at the table with my mom, I went to park the car. I have gotten to know many people at this restaurant from servers to managers. Literally managers come over, pull up a chair and chat with us. I know about their lives, their families, and I even know many of the hosts. Learning about people's lives and connecting with others, is still important to me. For brief moments, it makes me feel more normal. 

When I got home, I dealt with chores such as folding laundry and putting away dishes in the dishwasher. When I sat down to return email and write tonight's blog, I couldn't connect to the internet on my laptop! Literally there wasn't a WIFI connection and I couldn't seem to troubleshoot the problem. I restarted the laptop numerous times, I restarted the router, and nothing worked. When I tell you that it took my an hour to work through this problem I am NOT kidding. Technology issues make me panic and I am SO SICK of having no one at home to help me. To chat with, to listen to me, to offer a hand, to care about me! Any case, I took a deep breath and decided to unplug the laptop from the wall. I left it unplugged for five minutes and then reconnected everything! Thankfully at that point, the WIFI connection was re-engaged. But when I say my heart is still racing and my blood pressure has risen, I am not kidding. 

My life is this computer! On it I have access to all my documents, photos, and Foundation work! My commitment to myself is to get an account with Geek Squad, because I have to be able to have access to help when I need it. Moments like this remind me..... I wish Mattie were alive. Actually I always wish Mattie were a part of my life. But moments like these which make me panic, I wish more than ever that I could text or call Mattie. Mattie had a natural ability for understanding how things worked, I know if I needed help he would coach me through these technology issues. Any case, I channeled my inner Mattie tonight! I wasn't giving up, and was determined to reconnect the WIFI! 

Saturday, January 25, 2025

Saturday, January 25, 2025

Tonight's picture was taken in January of 2009. Mattie was in between hospital treatments. My parents were visiting, and we took Mattie out to one of his favorite restaurants. This particular restaurant had a miniature train that chugged along above the heads of diners. The train went around the entire restaurant. Mattie absolutely loved when the train was working and naturally I loved watching Mattie taking it all in!

Quote of the day: Grief is the last act of love we can give to those we loved. Where there is deep grief, there was great love. ~ Anonymous 

I recently came across a top ten list that suggests ways to cope with grief and loss. For the most part, I am not a list person, but this particular list caught my attention. The first three things on the list were:

1. Take a walk everyday 
2. Record THREE things you did today
3. Spend thirty minutes engaged with the world

What I liked about the first three things on the list is that they are doable and have merit. I used to love to walk with my buddy, Sunny. When Sunny died on January 10, 2024, that was the end of my walking. I haven't been on a walk since! Yet walking and physical movement are beneficial not only for one's health, but to manage feelings and emotions. I am ruminating about number one on this list and trying to figure out how I want to re-integrate walking back into my life. Right now, I am just so overwhelmed with one issue and chore after the other, that walking isn't anywhere on my radar scope. 

The second item on the list, entails recording three things you do each day. I think is a fabulous idea. Why? Because I think by writing down three things, it is a reminder that we are living and getting things done. The author of this list mentioned that the three things could be big or small. When depressed, just getting out of bed is an enormous task and accomplishment. So what I liked about this particular item is that it applies to all of us in some way. If we are living and breathing, we are doing something that is list worthy. 

The third item on the list invites us to engage with the world. This could be active or passive engagement. It doesn't mean you have to leave the house and interact with people, it could be a passive interaction like watching the news for thirty minutes or reading an article. Any activity that gets us to absorb information about the world around us, will enable us to see that while we maybe grieving or traumatized, the world continues to evolve. I understood the author's perspective on this, as he felt it is important for us to understand that our pain is not the only thing happening around us. I have mixed feelings about that notion, because when you are actively coping with grief and trauma, it is natural to shut the world out, because truthfully the only thing you can focus upon and manage is yourself. Taking on more data from the world around us may not necessarily be helpful. 

That said, I think engaging in the world in some way is a good thing, it is life affirming, and more importantly it is a "diversion," as I like to call it! Diversions are the only way to survive grief, loss, and trauma. There is NO POSSIBLE WAY to sit in pain 24/7. There have to be moments where we pause, in order to regroup. Such pauses, I call diversions. Diversions can be anything from physical or social activities to tasks. Fortunately with caregiving, I am inundated with diversions, otherwise, given the host of things I am facing now, I am not sure I could emotionally make it through the day! 

In light of #2 on the list, the three things I did today that meant something to me are: 

1. The snow has caused one of my walkway stone pavers to pop up. In popping up, it has prevented my backyard gate from closing. Today, I went outside with tools and was able to lift the heavy paver myself. I moved it enough so that I could get the gate closed. That said, I couldn't get the paver back into place. The cold has impacted the ground and the stone, and therefore, I will need help from our landscaper in the spring to correct this issue, because as it currently is, someone will fall over these stones. Part of me doesn't want to give up on a solution myself, and as it gets warmer, I may go at it again, but today I knew my limits, as the stone is heavy. 
2. I had several conversations today with my health insurer. Recently I had to purchase a health plan for myself. That may not sound like a big deal, but to me it was, as I have never had to make sure decisions for myself. I figured it out over about a month and today I got my new health card in the mail. Of course that meant establishing a portal account, and that is where I ran into problems. However, I spoke to three tech people, and together we worked it out! 
3. A friend reached out to me today, and was talking about irritable bowel syndrome. Something I unfortunately know a lot about from my caregiving experience. I sent my friend several ideas on how to manage the disease. I loved her response to me...'What notion you don't know about, a lotion or a potion, for a commotion is as vast as an ocean.' Translating.... she is saying I am resourceful! A compliment, which meant a lot to me!

Friday, January 24, 2025

Friday, January 24, 2025

Tonight's picture was taken in January of 2009. We took Mattie to NY City to begin his experimental treatment. In between treatments, we took Mattie sight seeing. That day's adventure, was going in a water taxi on the Hudson River. Mattie LOVED boats. In fact, if you asked him, he would have told you he was saving money in his piggy bank to purchase a boat! NOT a toy boat, but a real one. Which was why I used to call him, "Captain Mattie!" What is hard to believe is that a week later, US Airways Flight 1549, crashed into the River after hitting a flock of birds. It is truly remarkable and scary that we came so close to witnessing that tragedy. 

Quote of the day: A season of loneliness and isolation is when the caterpillar gets its wings. Remember that next time you feel alone. ~ Mandy Hale 

Our healthcare system is absolutely insufficient to ineffective at managing the needs of older adults. If you doubt what I am saying, just take note at your friend or family member's next hospitalization. Hospitals move quickly, there are a ton of people involved in a patient's care, many of whom don't talk to each other, and therefore the one doing the coordination of care is who???? THE FAMILY MEMBER! No one in the hospital is going to sit down with an older patient and patiently explain issues repeatedly. It actually frightens me to see older adults in the hospital alone.

Tonight at dinner, we were reflecting on the challenges of getting older. My mom was talking about all sorts of options like long term care insurance and so forth! But as I reminded her.... look who is doing the care of her and my dad? It is me. I am NOT unique! There are thousands of family caregivers all over this country, doing exactly what I am doing! Does having long term care insurance help? Sure, it can! But as I reminded her, NO insurance (including Medicare) is going to provide 24/7 caregiving. This is where having a spouse and children are so important. Because at the end of the day, the actual work falls onto the family. 

This of course left me with the sickening feeling that unlike my parents, I will be alone. My small family is no longer and naturally this weighs on my mind. Caregiving isn't for the meek, and no friend is going to take on such an intense role. This isn't to knock friendship, it is simply to acknowledge the incredible commitment, time, and energy needed to provide care. 

When these intense moments of anxiety about the future unfold, I literally have to press a pause button within my mind, otherwise, I would not be able to function and carry on with the multitude of tasks I perform on any given day. 

Just when I was feeling overwhelmed and distraught, I looked outside my office window and saw our outdoor lights on. Do you see the ones by the fireplace? There was a string of outdoor lights that haven't worked for months now! I had my electrician evaluate it in the fall and he told me it would be a big production to try to trace the line in the ground and fix the problem. So I had decided to leave it and have no lights. Tonight, they miraculous went on! What explains this? I am sure there is a logical explanation that perhaps the cold or the snow has activated the lines in some way! However, to me this is a symbolic miracle that when I have lost hope and faith, that even the impossible can somehow be possible. These lights turning on tonight reminded me that there are forces at work that look out for me, and at the center of that force will always be Mattie. 
 

Thursday, January 23, 2025

Thursday, January 23, 2025

Tonight's picture was taken in March of 2006. Mattie was four years old and the flower pot in front of us, we won at his preschool's auction. The reason I wanted that flower pot, was every child in the classroom placed their finger print on the pot using paint. To me it was a beautiful memento and reminder of that preschool year. Mattie was smiling and beaming with happiness that this preschool creation belonged to us. 

Quote of the day: A human being is a part of the whole called by us universe, a part limited in time and space. He experiences himself, his thoughts and feeling as something separated from the rest, a kind of optical delusion of his consciousness. ~ Albert Einstein

Today did not go as I thought it would. I was supposed to meet a friend today for tea while my dad had physical therapy and later in the day, I was supposed to go to my therapy appointment. I was able to do neither. But I have learned basically for the most part not to make plans for myself, because I am just juggling too much. As any full time caregiver knows.... YOU DON'T COME FIRST.

This morning, I noticed my mom was wearing sandals. It is JANUARY and 18 degrees outside! This is NOT sandal weather. For two months now, my mom has been complaining that her big toes were bothering her. I examined them and could see nothing to explain her pain. So this issue continued on for months. I suggested she see my dad's podiatrist, but she refused this suggestion every time I made it. Yesterday, she saw her rehab doctor and truthfully he had no idea what was going on with her feet! But the problem was only getting worse. It has been affecting her walking and the shoes she could wear.  

This morning, I did not take NO for an answer. I picked up the phone and called my dad's podiatrist office. Keep in mind that they see us every 90 days, and they have been working with my dad since 2021. So I have gotten to know the office manager and all the admin folks. Thankfully! Because they could tell I was concerned on the phone today and they squeezed my mom in for a 2pm appointment. So after my dad's physical therapy session at home, I whisked them in the car and drove to the podiatrist. 

It was a good visit and thankfully the issue is nail related. The doctor cut away a lot of her nail and also gave her toe spacers, to prevent toes from rubbing against each other. There is already a marked improvement. One down! What I have discovered over the years is that if you have a foot problem, you really need a foot specialist. Most doctors do not understand the complexity of the foot!

While listening to the news today, I heard a story about a sunfish, at an aquarium in Japan. The aquarium was under renovation and therefore no visitors came to view the fish in MONTHS. 

The aquarium staff were concerned about this sunfish, because he wasn't eating. They tried to understand what was going on with the fish and thought through all the logical causes, such as digestion issues or parasites. But then they thought outside the box!!!! Maybe this fish was lonely? He missed the visitors who came by his tank daily! So the staff taped people cut outs to the tank and guess what? The fish bounced back, began eating, and seemed to be feeling better. 

I am not sure what captured my attention about this story! Was it that we can learn so much from our fish and animal friends? Was it that I admired the staff for thinking outside the box and realizing there maybe a social and emotional component to the fish's illness? Or was it the simple notion that any living and breathing thing needs CONNECTION? The answer is ALL three. 

The power of connection can not be discounted, on a good day, but definitely under times of stress and trauma. I learned this in spades when Mattie was diagnosed with cancer. There was NO WAY we could have survived the horror of childhood cancer without the connection to our Team Mattie community. Which is why Mattie Miracle's tagline is.... IT IS NOT JUST ABOUT THE MEDICINE. Never under estimate the power of social and emotional connections, they may not cure an illness, but I would say the medicine can never be as effective without it! 

 

Wednesday, January 22, 2025

Wednesday, January 22, 2025

Tonight's picture was taken in January of 2009. We took Mattie to New York City to start his experimental treatment. Our team in Washington, DC contacted the NY team to let them know that Mattie LOVED cardboard boxes. They encouraged them to save some for Mattie's visit. They did and they thought that was an ODD request. Look what Mattie built while in the NY clinic. This airplane left the hospital, was placed in a yellow NYC taxi cab, and it came back to the hotel with us. Mattie wanted to take it back to Washington, DC, but we agreed to take photos of it and leave it in NY. I am quite certain the staff at this clinic quickly learned that Mattie was a unique and creative fellow and that wonderful things can be constructed from boxes that would otherwise be thrown out! 

Quote of the day: Emptiness is a symptom of loss. ~ Jean-Paul Sartre

It was a stressful morning because I had to get both of my parents up and in the car by 9:30am, in order for them to make their rehab doctor appointments on time. The appointments are at the hospital, which is over thirty minutes away from us. I can control my dad's schedule, but managing my mom in the morning is hard. When she moved here in 2021, she would get up at the crack of dawn and had much more energy. Now, I think with age and also the grief and trauma we live with, I believe this has greatly impacted her existence. 

We managed to get to the doctor's office and because of the cold, you should see the number of jackets and coats I juggle. My mom wears three and my dad two! To move into the doctor's office, that required the removal of all jackets and coats in order to be examined. This doctor has been working with us since 2022, when my dad was admitted for a pacemaker placement. He always greets me with a hand shake, a smile, and then asks.... how are you doing? He reminds my parents often that they are stable because of the excellent care they receive. 

Throughout the year, I juggle physical therapy sessions for both of my parents. Sometimes they qualify for in-home therapy and other times, my mom at least qualifies for outpatient therapy at the hospital. On an aside, between Mattie and my parents, I have a solid understanding for how the healthcare system works, or doesn't work. It certainly is not a user friendly system for older patients! 

Today, the doctor felt my mom needs physical therapy asap. So in March (I elected for the spring), I will begin once again with driving my mom back and forth to the hospital, most likely for another 8 months of therapy. As for my dad, the doctor is encouraging him to take more responsibility for exercising, but honestly within 30 seconds, my dad won't even remember that conversation. Which is frustrating. The doctor came up with a strategy where my dad would have to sign an exercise contract at home so that he would be more engaged in the process. Again, all that is great, but any time you place a responsibility upon my dad, that means it will be one more task for me to manage.

I think dementia is the kind of disease that isn't truly understood or appreciated. Because it is an invisible disease! A person, like my dad, may look good and seem functioning, but that doesn't mean that is actually the case. So many doctors think my dad showers himself, does all his basic hygiene and takes responsibility for things. Unfortunately that couldn't be further from the truth. It is a great sadness for me to see my parent's disease progressions and knowing one day they won't be with me. 

As tonight's quote points out, emptiness is a symptom of loss. Loss that has happened and even loss that will eventually happen! I face and contend with all sorts of losses daily. Without my parents, I will be alone. The life that I thought I had, is gone, and as you get older, the re-inventing yourself becomes harder on every level. I already had to re-invent myself when Mattie died. It has been a hard reality having to accept that I would no longer actively parent my son and that I have missed out on every typical milestone moment for a mother. At what point is enough, enough?! How much loss and trauma does a person need to absorb? I have no answers, only constant challenges. 

Tuesday, January 21, 2025

Tuesday, January 21, 2025 -- Mattie died 798 weeks ago today.

Tonight's picture was taken in September of 2006. Mattie was four years old and fully on! What was Mattie playing with? Patches cat toy! He was trying to inspire Patches to catch the toy mouse that would come out of the round device, when Mattie pressed a button. But here's the funny thing about this whole interchange! Patches was more focused and interested in Mattie! So in essence, Mattie was watching Patches and Patches was watching Mattie. They were transfixed, not moving, and awaiting who would make the first move. I loved watching, observing, and learning from Mattie!

Quote of the day: Do one thing every day that scares you. ~ Eleanor Roosevelt

Of course I do not know the context in which Mrs. Roosevelt stated this quote, but what I imagine she was referring to was the invitation to push ourselves each day to learn, do, or experience something new. Change and new are scary! You do not need to go through a full blown crisis to feel scared. Most of us have a daily routine. Givens in our lives. After all, it is human nature to count on consistency. To have expectations for how things will work, and when things do not go as we hoped, planned, or thought they would, then what? Then what ensues can be scary! Change forces us out of our comfort zone and tests us in ways we did not think was imaginable. 

The year that Mattie was enduring cancer treatment, for example, I wasn't just doing one thing a day that was scary, I would say it was minute to minute scary. Constantly on edge, making life and death decisions and hoping that whatever was decided would be the correct decision. That was the extreme of scary. But one doesn't have to live through cancer, to be scared! I found that parenting was a series of challenges, even when Mattie was healthy. For example, when Mattie was three years old, he was diagnosed with sensory integration issues (meaning that Mattie's processed sensory information in a very heightened way.... as he had issues with people coming into his physical space, he had sensitivity to noise, was overwhelmed in crowds, and was irritated by textures of clothing or being touched unexpectedly). These issues were significant enough that I sought the help of an occupational therapist. 

Mattie attended occupational therapy twice a week for two years. On an aside, I strongly believe in early intervention..... in Mattie's case, it improved his quality of life. Seeking the help of an occupational therapist pushed me out of my comfort zone. It was hard to admit I needed help, especially when it came to raising Mattie. But pushing through that feeling opened up a whole new world for Mattie and for me. We developed a close bond to this therapist, she worked with both of us each week and taught me strategies to support Mattie. Strategies that worked and bonded us closer together. What would have happened if I did not push myself out of my comfort zone? Well in this case, I think it would have been detrimental for Mattie. By the time Mattie was in kindergarten, his teachers NEVER knew he had sensory integration issues. That was how effective therapy was!

After each occupational therapy session, Mattie's reward, was we would go to the Starbuck's on the corner and he would get a pumpkin muffin and milk. Two of his favorite things. We would go in, sit down, eat muffins, chat, and do puzzles and games together. Why do I bring this up? Because today, while at Starbuck's with my mom, I saw a mom come in with three young children. She was hosting a tutoring/homework session with the girls. Each of the girls got treats and somehow seeing them sitting down, eating, and doing activities with this engaged adult, took me right back in time. Right back to when Mattie was 3 and 4 years old. Ironically though my mom and I go to Starbuck's often, I have never made the connection to the store and Mattie. Not until I saw these girls today. Something about their whole presence jogged my memory. It was like seeing a movie going off in my mind! Reviewing memories can sometimes be scary, they can be emotionally overwhelming, and therefore perhaps it is easier to shelf them!

But like tonight's quote points out, doing something that is scary (within reason), can actually end up being a positive thing. Because I have found evoking and reviewing Mattie's life (though bittersweet as I rather have the boy rather than the memories) keeps him alive in my mind and heart, and in the process, by sharing memories with you, you are also carrying on his beautiful legacy. 

Monday, January 20, 2025

Monday, January 20, 2025

Tonight's picture was taken in December of 2001. I was five months pregnant with Mattie. Keep in mind that three months before this photo was taken 9/11 occurred. I will never forget the fear and anxiety I felt. I was scared for my own safety and the security of the country. Then add to that, I found out that I was pregnant. I did not know if all this stress was going to impact Mattie and I also did not know if I was ever going to be able to meet with an OB/GYN as appointments were canceled due to this national tragedy. When this photo was taken, it was three months later, and we tried to stabilize. As you can see, my fur baby, "Nurse Patches," was in my arms. Patches was an amazing and super bright kitty. She got the name "Nurse Patches," because when I was sick one day with an 102 fever, she stayed with me on my bed the entire time. I felt she was watching over me and was there for support. 

Quote of the day: Loss is simply what happens in life, and the meaning is in us afterwards. ~ David Kessler

 

A friend of mine recently wrote to me and introduced me to David Kessler. She wanted me to see this VIDEO. David is a grief expert and is also a bereaved parent. This video is about six minutes long and worth a watch. 

David mentioned an article he read in the NY Times that asked people in their late nineties how they found happiness and meaning in their lives? The answer was interesting...... they focused on SMALL GOALS and LITTLE MOMENTS of beauty. Not the big milestones so many of us use as benchmarks..... such as jobs, graduations, weddings, having children, etc. However, what happens to these benchmarks or milestones when we are grieving or traumatized? They really become less important, and border on non-existent. 

Instead, David discusses the importance of focusing on micro-pleasures -- the small things around us that keep us connected and bring comfort. Notice he doesn't say.....joy! He gets a gold star from me! Because joy and happiness are NOT words that resonate to any of us in the throes of grief and trauma. 

In the video, he discusses that our brains are hard wired to focus on the bad. However, he challenges us to work on installing the good. Certainly grief and loss of a loved one makes us focus on the negative. But even with all the negative, there is a nugget or two of positives. He suggests three ways to install the good:

1. Identify a positive experience or memory
2. Savory this memory and repeat the story over and over again to yourself
3. Absorb this memory  

I would say this strategy definitely occurs almost naturally over time. It is an evolution of living with grief! I know when Mattie first died, I was very focused on his 14 month battle that we endured. There was a great deal of daily horror that I absorbed and had to be processed. However, over time, even with the memories of these horrors, I was able to tease out the positive. Yes I know that sounds ridiculous..... what kind of positive could possibly result from Mattie's cancer diagnosis, treatment, and death? The positives were the amazing community and human connections we formed during this nightmare. I saw kindness, true friendship, and a community come together to do whatever was possible to help Mattie and my family (e.g., daily meals delivered for us to the hospital for 14 months, gifts of all kinds, birthday parties for Mattie, a community run Mattie March, etc). Which is why even today when I see certain things like sunflowers, for example, it sends me right back in time. Back to the positive, in the midst of great terror. It is through the worst trauma and grief a parent could experience that it enabled me to feel and be the recipient of the beauty and humanity in people. So yes I do agree, that when we dig deep, there are positive experiences and memories that are worth exploring, savoring, and absorbing. 

I leave you tonight with the notion that maybe we should learn from our elders. Shouldn't we all try to find meaning in the small moments? "THINK SMALL, FIND MEANING" is my motto for the day! 

Sunday, January 19, 2025

Sunday, January 19, 2025

Tonight's picture was taken in January of 2006. Mattie was three and half years old. I was the parent helper that day, so that meant that I got to assist the teachers and also get to know all the children. I am so happy that Mattie went to a coop-preschool, and I got to experience these moments right alongside him. As parent helper, that also meant that I was responsible for bringing in snacks for all the children. I got to learn quickly what the children gravitated to, so I always baked something and had some kind of fruit! Mattie's teacher snapped this photo of the two of us, and I am so glad she did because I look upon that time fondly. In fact, many of my friends who are still a part of my life today, I met at this special school. 

Quote of the day: The meaning of things lies not in the things themselves, but in our attitude towards them. ~ Antoine de Saint-Exupery

So far 2025 has been the year of snow! It snowed again today. My neighbor who typically helps me dig out is traveling. He alerted me to this, so I knew I had to be resourceful today to manage the snow. The only way to manage snow is to constantly go outside and dig out before it piles up and becomes unmanageable. Thankfully today's snow was wet and slushy, making it much easier than the heavy snow of two weeks ago. Typically I am not a cold weather person, but I viewed going outside today as a blessing. I needed fresh air and to see the peacefulness of the falling snow. As odd as that sounds, one has to look for the small and simple moments in life. 

Mattie loved the snow. Not so much sledding, but the possibility to create and build snow structures was right up his alley. I know if Mattie were alive today, he would be outside and right alongside me. It is hard to believe that Mattie would be 22 years old. Of which only 7 of those years, was he actually alive. I knew 7 years old Mattie, but I have no idea what 22 year old Mattie would be like. Which is upsetting as his mom but I also feel his death is a loss to our world. What I do know, regardless of age, was Mattie and I would have always been close and there would be no way he would have me outside shoveling snow alone. 

Between shoveling and doing Foundation work, I also cooked a whole chicken and I am in the process of making chicken broth from the carcass. 

My daily existence is challenging, but snow days are even worse, because I am trapped at home. Some people love that feeling, but I am not one of them.