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 was 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!