Wednesday, September 18, 2024

Wednesday, September 18, 2024

Tonight's picture was taken in September of 2007. Mattie was five years old. Mattie went up to Boston with Peter to visit his family. This photo captures all the cousins together. Mattie was the youngest of the cousins, and tried to keep up with them in activities and conversation. A precious moment in time. 

Quote of the day: Sometimes the hardest part isn’t letting go, but rather learning to start over. ~ Nicole Sobon

Tonight's quote is so meaningful. It is extremely daunting, scary, frightening, and overwhelming to think that I have to start all over again. That I lost the one person who was my world, my everything, and I always thought we would have each other forever. But since Peter left almost a year ago, I have been forced to find a way forward each and every day. I assure you it isn't easy and if I wasn't caring for my parents, I would really be really lost, questioning my reality, and my future. Caregiving is my major distraction and as I have learned, distractions are NECESSARY when coping with trauma. 

This morning, I received an email from my former physical therapist. I worked with her years ago, when I was diagnosed with a torn labrum (protective ring of cartilage that is found outside the rim of the socket of your hip joint). This email was totally out of the blue, because we haven't kept in touch after my therapy ended. But I went to therapy for months and thanks to the therapy, I did not need surgery. Which was amazing! 

Any case, the therapist wrote....................

Good morning Vicki,

I know this will be an out of the blue message, and I hope this is to the right person. I worked at Washington orthopedics and sports medicine between 2014-2019 and we would have crossed paths then. I’m pretty sure it was you who gave me a “Hope” keychain. As you can see by the attached picture…it has started to fall apart. I’ve always remembered the name of your foundation and the reason you had given me the keychain (that I had given you hope back). It has been a constant reminder these last years for why I do my job. I was wondering if I would be able to purchase another one of these keychains from you? Thank you so much.

My response...............................

I absolutely remember you and YES that keychain is from the Mattie Miracle Cancer Foundation. Since working with you, I haven't had to go back to the doctor for hip issues. I will never forget our time together because I was truly worried I would need surgery. You provided hope, healing, and a new lease on life. I am very touched after all these years that you would still have the HOPE keychain that I gave you. I hope life in Colorado is everything you had hoped for and that you are still working as a PT. As you have many gifts and skills to bestow on people. I will be happy to mail you another keychain. Just send me your address. 

Literally when I received this message this morning and read it, my initial reaction was..... WOW I don't even remember bringing my therapist a HOPE keychain, nor do I remember thanking her with it because she gave me hope of living a pain free life without needing surgery. It wasn't until she recounted the story that I was able to connect the dots. When I think about that moment in time, it seemed like AGES AGO! When my life was profoundly different because Mattie wasn't alive, but stable because I had the love of my husband and I thought we would always have each other to navigate the challenges of life. Life is filled with challenges, stress, and trauma, not to mention grief. But I have found sharing these moments with my spouse made them far more manageable. Living life without my other half has felt like a limb has been amputated from my body. It isn't natural, it doesn't make me happy, and leaves me with great angst and heartache each and every day. 

My life feels stuck and that alone can be distressing. But it is not just stuck, it's broken, and I am left to pick up the pieces. Yet there is no time to pick up the pieces because I am too busy dealing with the house, with my parents, with cleaning, cooking, and non-stop bill paying, and the Foundation. There are no glimmers, just a lot of darkness, with no end in sight. 

Tuesday, September 17, 2024

Tuesday, September 17, 2024 -- Mattie died 780 weeks ago today.

Tonight's picture was taken in September of 2008. It was Mattie's first month in treatment and it was a hard adjustment going from being free to do what he wanted to do at his home, to being confined and limited living in a hospital. Sound and confusion were sometimes too much for Mattie, so that day he built a hiding space out of a large cardboard box. As you can see, he and his IV went into the box and he did not want to look or interact with anyone. There were many, many emotionally painful times in the hospital and as Mattie's parent it was heart breaking to witness his transformation and worse, it was hard knowing there was NOTHING I could do about it. 

Quote of the day: Love is never supposed to hurt. Love is supposed to heal, to be your haven from misery, to make living worthwhile. ~ Mia Asher

Today was a total blur. I have been dealing with COVID isolation since last Thursday. On a good day, I face incredible challenges, but I assure you any more isolation and confinement at this point are enough to put me right over the edge. I was flooded with all sorts of emotions today that I had to walk in the backyard for about an hour and pull out weeds. That wasn't my intention for the day. My goal was to sit down and go through another three more hours of continuing education. But there was something inside of me that prevented that from happening. I was too wound up, too upset, and too agitated. My mind is desperately trying to understand and make sense out of what has happened to my marriage. 

By 3pm, I decided to go back to my computer and began another training course. This one focuses on Dialectical Behavior Therapy (DBT). It is a crash course with 15 core competencies, and it is 6.5 hours long. Though I have heard of this therapeutic philosophy and technique, I have never studied it before. However, what caught my attention is it is used for a variety of mental health issues, and focuses on regulating distress. 

The word dialectical is interesting in and of itself because it basically means two opposing things being true at the same time. For example, in my role as a caregiver... I can feel HAPPY to be assisting my parents and at the same time FRUSTRATED/STRESSED to be performing this role alone. Happy and frustrated may not sound like they go together, but this is actually spot on for human emotions. We are complicated beings who don't just have one emotion at a time! Yet having all these emotions can be overwhelming and can make it difficult to cope. Therefore, we learn to accept that we will have multiple emotions at once and can get overwhelmed, but at the same time we can also empower ourselves to take all these feelings and change our outlook about them. 

This butterfly model shows the four modules of DBT. Notice that the model talks about acceptance and change. These are the core principles of this model, with acceptance being influenced by Eastern cultures and change being influenced by our Western values. When blended together, we find we can walk on a "middle path." Meaning we can try to avoid extreme positions which tend to lead to problems. 

I went through about an hour of training today. I thought I wouldn't be able to concentrate, but I LOVE the clinician. She is witty, engaging, high energy, and honestly she reminded me of me when I was her age. She even introduced us to her dog, Mimi! Though this presenter is young, you quickly realize there is a reason she is doing this six hour presentation. She is very knowledgeable, has wonderful real life examples, and encourages audience participation. Literally she sucked me into her presentation and it was a positive DISTRACTION. 

After sitting for an hour, I got up to make dinner. However, her content was whirling around in my mind, especially mindfulness and distress tolerance. I always thought mindfulness was equivalent to mediation. IT IS NOT. It actually requires one to actively pay attention and be in the moment without judgment. While reflecting on that the moment, you can ask yourself questions such as.... what are your thoughts, what are your feelings, what are you seeing and hearing? Not ten minutes ago, not an hour ago, BUT RIGHT NOW. She is 100% correct, when you stop and reflect in the moment and ask yourself these questions, it triggered for me a moment of calmness. It caused me to slow down. 

Distress tolerance involves managing a tough moment without making things worse. She suggested that distraction is one of the ways to help us manage distress. As soon as I heard this, I immediately said.... OF COURSE! I learned this by happenstance when Mattie died. I would get so overwhelmed with emotion and that the only way OUT OF this terrible negatively and stress, was to do art projects or other activities. I referred to these activities back then as DIVERSIONS, and in essence diversions are distractions. My point to sharing this model is that besides just taking the course, I am trying to apply it to my own life, and though I may not have known the modules by name and the specifics behind this intervention model, I AM LIVING IT! I have lived these modules with Mattie's cancer diagnosis, through Mattie's death, and now these modules give me the language to help communicate the great distress I am living with each day since September 23, 2023.   

I have two areas in the backyard that need attention. This is one of them! I weeded this area today. Weeds were everywhere. I spent an hour pulling vines and weeds. I had big plans for this area. It is in a quiet and secluded part of our backyard and I had wanted to make it into a Zen/memorial garden for Mattie. This was a project that I wanted to work with Peter on. Unfortunately this barren and undefined area is reflective of my life. 

While outside today, I had a Mattie sighting! Mattie knows just when I need to be reminded that.... he's watching everything and that I am not alone. 

Monday, September 16, 2024

Monday, September 16, 2024

Tonight's picture was taken in September of 2008. It was Mattie's first month in the hospital. All the rooms in the PICU had a window like this into the hallway. It felt like a prison, as the room was the size of a shoe box, and this type of window did not help the overall feeling of being trapped. That evening, Peter blew up rubber gloves and Mattie did a turkey show through the window for nurses and anyone in the hallway. Mattie's nurses learned early on that Mattie was full of energy, life, and had quite a sense of humor. 

Quote of the day: Forgiving what we cannot forget creates a new way to remember. ~ Lewis B. Smedes

This is the second morning I have woken up and found myself faced with an anxiety attack. I truly think facing my reality each day, is mentally and emotionally taxing. So I am not at all surprised that coming to consciousness evokes panic. Indie, my cat, was particularly attentive today, as if she knew something was wrong. After I fed her, she followed me upstairs and back to my bedroom. Instead of moving to the next task of taking a shower and getting myself dressed, I instead sat on my bedroom floor, and decided to pet Indie for five minutes. Ironically that was therapeutic, and after I pet her, my heavy chest and feeling of anxiety passed. THANK YOU INDIE!

By the time I was ready to go downstairs, I noticed my mom wasn't up yet. Since she is the one who insists on getting up early each morning, I was concerned. So I went into their bedroom. If you saw her today, you would never have guessed she has COVID. Her congestion is practically gone, she doesn't have a cough or fever. I think starting Paxlovid EARLY helped her dramatically. My dad has been fever free since Saturday, but still has an occasional cough. 

It was a day of phone calls and rescheduling all sorts of appointments. My dad was supposed to have his kidney stone procedure this Wednesday. His surgeon cancelled it. The scheduler wanted to push my dad's procedure off until the end of October. I said NO! My dad can't keep those ureter stents in for a month and a half, especially since he already has a urinary tract infection. Any case, she checked with the surgeon, and he agreed with me. So my dad's surgery is now September 24. Of course, one problem led to many others. His change in surgery date meant that I had to cancel two of my own doctor appointments. 

Though I continue to test negative for COVID, my doctor did prescribe me Paxlovid, in case I do develop symptoms. She understands that I am my parents sole caregiver and have a lot on responsibilities on my plate. I appreciated her medical support, because I think what adds to my fears right now is getting sick. If I get sick, I don't have Peter to back stop me. It is Vicki and Vicki alone. 

This afternoon, I went back at the six hour virtual training course I started yesterday. I am happy to report that I completed the course and got six more hours of continuing education toward the 40 that I need to renew my licensure in December. Needless to say, I have another 13 to do, and will begin another six hour course tomorrow. The course I just finished was down right fascinating. The lecturer made the content real and easy to process and understand, and she armed me with information that helps me personally moving forward. 

I received these wonderfully supportive cards, and truly every message, text, email, and gift mean more to me that my readers will ever know. Thank you for caring about me and for reminding me of the special person you feel that I am and have always been. 

Sunday, September 15, 2024

Sunday, September 15, 2024

Tonight's picture was taken in August of 2009. Though Mattie looked happy and his hair was growing back in, we knew at that point that his diagnosis was terminal. Which was why his child life therapist planned for this special evening at the Lego store in the mall. It was after hours, and there was NO ONE else in the store. Other than Mattie and Lego master builders. Mattie decided he wanted to build a NYC taxi with the master builders. It wasn't built from a kit, but from the creativity of Mattie and the team. As you can see Mattie was very proud of his taxi! To this day, this taxi is a focal point on my office shelves!

Quote of the day: Love is blind, but a broken heart sees everything. ~ Matshona Dhliwayo

I got up later than usual today. Since there is nothing on our schedule, because my dad has COVID, I wasn't as compelled to stress and pressure myself. However, by the time I finished my morning routine and saw my mom, I could tell she wasn't herself. Though when I asked her, she said she felt fine. As the day continued on, by 1pm, I did not like how congested she sounded, so I took her temperature. Sure enough, she was running a fever. Out came my COVID tests, and within ten minutes, I saw she has COVID. I text messaged their doctor, and he basically told me whether she tested positive or not, he wanted her on Paxlovid, given her fever and that my dad has COVID. My mom has a weakened immune system because of her lung condition, and therefore, none of us play around with her. 

I ran to CVS to pick up her script and I am thankful that I did not listen to my mom and instead assessed her myself. I think since both of my parents have dementia, their ability to accurately report how they feel is impaired. I started my mom on her first dose of Paxlovid and it is my hope that I caught the virus in time before she developed the same horrible cough that my dad has had for days. My dad is definitely on the mend, but the goal now is to try to remain healthy myself. 

Since I am quarantined at home, I decided to work on my continuing education requirements for my license renewal in December. I already have over 20 hours accrued, but I need another 20, for a total of 40 hours. I awhile ago I downloaded several on-line trainings that interested me and today I finished about three hours of training. I am hoping to do another three hours tomorrow, in order to complete this one course and take the test. The course I am taking is down right fascinating and I am finding it very insightful, as it is directly applicable to the heartache I am facing. 

I received this wonderful care package today from my friend Junko. She dropped off a ton of paper products and these lovely pastries in my garage! 

I am also grateful to my friends who provide me with gift cards of all kinds so that I can order food, which gives me a break from my daily routine of cooking, serving, and cleaning!