Saturday, September 28, 2024

Saturday, September 28, 2024

Tonight's picture was taken in September of 2002. Mattie was five months old. I can't tell you how many gadgets we bought for Mattie when he was a baby. Not having any experience as a mom, I wasn't sure what was going to work. But this "tot wheels" was a one of my best purchases. Mattie loved standing on his feet, zooming around, and having his own independence. He would follow me all over the place in tot wheels and though the developmental goal at his age was to sit and crawl, Mattie did not want any of that. So I went with what he gravitated to. 

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

I woke up at 8am today! In my house this is unheard of! But on Saturdays when my dad's physical therapist isn't scheduled, I am trying to get more rest. Once I did my usual morning routine, I sat down and started October's bill paying process. Last year after Peter left me, I was in scramble mode. I really did not have a feeling for money coming in or what needed to be paid. So far I have survived a year of bill paying and now that I will be entering year two of this nightmare, I have decided to do an excel spreadsheet per month. This helps me see the flow of money and how to budget things. I guess with more and more experience, I will see that I am able to do this. But I am still very anxious about bills and always waiting the next unexpected shoe to drop. When I tell you that I now dread going to the mailbox and receiving email, I am not kidding. 

Since it was a beautiful weather day, this evening I went outside to weed in the garden. In the process of weeding, I went along our property line and saw vines and debris that had to be cut back. While pulling debris, I put my garden shears on top of the garbage bin. Somehow they fell off the bin and right onto the top of my foot. Mind you I was wearing a closed garden shoe with rubber soles. It went right through the shoe and literally I saw a fountain of blood flowing out. I ran inside the house to deal with this crisis. I did not tell me parents, because neither of them are good in a crisis. I walked into our laundry room and literally sat there putting pressure on my foot and also had an ice cube on the gash. It took over thirty minutes to get this bleeding under control. When the gushing slowed down, I walked out to the garage, sat in the trunk of my car and accessed one of my first aide kits. 

When I tell you the kitchen looked like a crime scene I am not kidding. 

I checked, I had a tetanus shot in 2019. But I did write to my doctor anyway. I have already taken Advil and have ice on my foot because my entire foot is aching terribly. So much for trying to get outside, get something done, and have a diversion from my everyday stress, trauma, and heartache. 

Friday, September 27, 2024

Friday, September 27, 2024

Tonight's picture was taken in September of 2002. Mattie was five months and had began to eat solid food. He was a big fan of rice cereal! What I love about this photo was Mattie's look.... he was looking right at me. Not unusual for Mattie, and this continued throughout his entire life. He always had a bead on me. Mattie did not like his high chair one bit. So his car seat became his chair of choice! As I always say, with Mattie I learned to operate outside the box. 

Quote of the day: Love is the hardest drug to quit, but it is even harder when it is taken away. ~ Ashleyy

It is Item Drive season for Mattie Miracle. Check out what was outside my door. I am so grateful to our friends and supporters. If you are interested in check out our Wish List, click on the red link.  

Our Amazon Wish List

All items stock our Snack & Item Carts at hospitals. The Carts have candy, snacks, drinks, and toiletries and are provided to families free of charge. Our Carts support over 2,500 families a year!

I try to process through boxes daily, organize items, and write to each of our contributors. 

A glimpse of things that have come in so far for the Item Drive! 

Tonight I prepared fish piccata. Here's the funny thing about all of this. I happen to like to cook, mainly because I love to eat. But I have learned that cooking is a mindfulness activity. One of the many things I am learning in my continuing education course. I used to think that mindfulness meant meditation, which DOES NOT resonate with my personality. 

But being mindful, can be an active task. Such as cooking. It is anything that helps you be aware of your thoughts, feelings, and surroundings in the present moment without judgment. In essence it gets you to slow down, in order to feel calmer, more self aware, so that you are better able to respond to thoughts and feelings.

Sometimes I can feel all sorts of negative thoughts about my situation pop into my head and they can spiral and take over. In addition, when I get into this state, my outlook about the future becomes non-existent and bleak. I have been learning to sit with those feelings, but my rational side understands that I have to snap out of it because there are too many other tasks to address. Fortunately I have multiple distractions associated with caregiving, because sitting with the devastation I feel each day can wash over me like a tidal wave. 

Thursday, September 26, 2024

Thursday, September 26, 2024

Tonight's picture was taken in September of 2002. Mattie was 5 months old. Back then "tummy time" was all the rage in child development. Even Mattie's pediatrician encouraged me to put Mattie on his tummy for a few minutes a day, to develop his neck muscles. This was one thing Mattie absolutely HATED! Mattie was about movement and being on his feet. Lying on his tummy stifled his freedom and what I learned about being Mattie's mom, was I had to follow Mattie's needs and lead and put less focus and attention on normed developmental milestones. 

Quote of the day: Your past does not equal your future. ~ Anthony Robbins

This evening, I went back to therapy. I missed sessions for a month so far, because of her travel and my parent's illnesses. Did I miss it? Not one bit. For the past several weeks I have been plugging through 12 hours of continuing education. I have learned a ton and a lot of it I have been applying to my life now. I am so glad I did a training on dialectic behavior therapy, because it has helped me see that two opposing thoughts can really exist at the same time and it is okay! I will probably write more about what I am learning in another blog posting. Tonight's session was interesting because I think she could personally see how mentally busy I have been between our last session and now and was totally impressed with how I am operationalizing what I am learning. Obviously she doesn't know me, because I used to be a person who LOVED to learn. I have an inquisitive mind and I am intrigued by other people, their lives and experiences.

What the therapist is trying to help me understand is that I can live and survive on my own. She wanted me to evaluate all that I have accomplished this year after Peter left me. She said I went from being a person who couldn't pay a bill, to a person who manages all the finances, all the house and car maintenance, runs a household and cares for both of my parents. Somehow she was impressed by what I have done all on my own. I literally said to her, "I am happy for you!" But all of this doesn't mean much to me, as I measure my life not on things and tasks, but on the connections I make with people. My number one connection has always been, my husband. 

All of this is an aside to my day. This morning, I dropped my dad off at his memory care center. The staff was happy to see my dad return. When the staff saw me, they asked me to come inside. There is a classmate in my dad's program who knows me. I met this person before he was diagnosed with dementia. Any case, this person has been asking to see me for several weeks. Today timing aligned. When he saw me..... he literally came flying over and gave me HUGE hugs. He reminded me that I am a special person and that he and so many people love me. After my friend went back into his class, the staff told me that my friend talks about me all the time and they learned from him all the wonderful things I try to do to help people. I am not used to such kudos in my daily life, so I found all of this so so touching. 

From there, I drove to the mall. I have wanted to get my purse repaired at the Brighton store for months. But with my parent's in tow, it is impossible. Today, I decided to just do it! As soon as I entered the mall, I was hit with all sorts of emotions. The last time I entered this mall, was to either walk with Peter or meet him and try to communicate. As I walked the mall, I was flooded with all those memories. I can't even do a normal thing, without reflecting on my marriage. As I kept walking, I then passed a Build a Bear store. This is a store Mattie used to love. Again, this brought sadness.

By the time I got the Brighton store, I was wound up like a top! When I started talking to the store clerk, I was agitated, because the reason my purse needed to be fixed was because the company broke the zipper during the last purse cleaning (the perk at Brighton is they will clean and condition you purse for free every year). The clerk said that I should have brought this issue to their attention right away after picking up my purse in 2022. This is where I lost it. I told her I balance a circus show and this was the first time I was able to return to manage this issue. Needless to say, within minutes, Patty and I became friends. I learned about her life, her husband battling cancer, and the impact on her life. She learned about my role caregiving for my parents and she told me about the Glen Campbell song, I'm Not Gonna Miss you. I never heard this song before, but I attached it below. Campbell suffered from dementia and wrote this song for his wife. The song is very meaningful to me and hits home. 

Wednesday, September 25, 2024

Wednesday, September 25, 2024

Tonight's picture was taken in September of 2002. Mattie was five months old. By that point, Mattie was being introduced to rice cereal and other baby foods. He had his favorites, such as sweet potatoes, butternut squash, baby oatmeal, and bananas. I kept at with green vegetables, and his reaction to peas was adorable. Basically that smile showed that they really weren't all that bad! 

Quote of the day: Sometimes, I don’t know what haunts me more… The memories of you… Or the happy person I used to be. ~  Ranata Suzuki

When I say I go to my bedroom window each night to look for Peter, this is the window I am referring to! This morning, I could hardly get out of bed. I am that exhausted. After getting up and feeding Indie (my cat), I made hot tea and went back up to my room to take a shower and get dressed. Since I could see that neither of my parents was up yet, I decided to sit on the floor by my window and have my tea. It was a moment to pause and not jump to another activity. I have so few of these pauses, which is why this was so notable. For the most part, I feel like a rat on a treadmill each day, and it is very stressful keeping up this pace without help and without a break. Keep in mind that this December, I will be caregiving for both of my parents for three solid years. With no vacation, no break, and no other supports. I remember when they first moved in, I was very upset and frustrated because I was under some false impression that I would have more independence and that my mom could balance some of my dad's care and also entertain herself. I learned quickly that my mom needs as much support as my dad. So as time moved on, I got worn down. Almost like a prisoner in a cell, you learn to adjust to your confinement and the structure and SAME routine of each day. Am I saying this doesn't bother me? NO, NOT at all! I am cognizant of what has happened to my life, but I also know life will not always be this way. A fact that I hoped Peter could also appreciate.

One of the tasks I did today, was grocery shopping. While driving home, in my head, I thought.... what if my parents weren't at home (meaning they weren't alive)? Then what?! That whole notion was so overwhelming that I literally had to park that notion somewhere, and forget it. Because to me, my life is over. 

This evening, while cooking dinner, I had two surprises. Gifts from God in a way, as I find nature and natural beauty very inspiring and healing. I know that our hummingbirds show up in May (around the time of Mattie Miracle's Walk) and then they disappear and fly to warmer climates some time in September. 

I was quite certain my humming friends had already moved along, and I was going to take down my sugar jars this weekend. But then I saw this fellow tonight! 

Outside my front window, were four deer. Two were babies, and at times they were running around and chasing each other! It was priceless. This is a sight I will never get tired of seeing. 

Tuesday, September 24, 2024

Tuesday, September 24, 2024 -- Mattie died 781 weeks ago today. 

Tonight's picture was taken in September of 2003. Mattie was a year and a half old and a live wire. Though Mattie was walking, he still was toddling around, and he enjoyed playing around my plant stand. The plants, pots, and our cat's cushion (which was high up on the plant stand) intrigued Mattie. As Mattie was checking things out, I snapped a photo of him in action. I am not sure why I was so obsessed with taking photos of Mattie, but I am so thankful that I was. I captured milestones and everyday activities. Mainly because I loved seeing the world through Mattie's lens.  He will forever be missed. 

Quote of the day: Sometimes you have to let things go. Sometimes you have to stop caring for a minute. ~ Trina Etmanskie

Here's another quote where once again my immediate reaction is........... NO, NOPE, NOT GOING TO HAPPEN! Anyone who has been reading this blog since 2008, knows full well, that I don't let things go. They are a part of me and not for one minute do I stop caring about those who are important to me. It is not what guides, regulates, or defines who I am. 

Today was an incredibly long day. We were at the hospital from Noon to 6:30pm. We finally got home at 7pm from my dad's cystoscopy, ureteroscopy, lithotripsy and stent replacement procedure. I had a rocky start with this urologist, but I have come to appreciate him. While in the pre-op area, I had the pleasure of interfacing with Cathy, my dad's nurse. Given that I am my parent's medical power of attorney and power of attorney, hospital personnel tend to deal with me. This nurse asked many questions and quickly surmised I am running a circus show. She could see that I balance both of my parents alone, with no help at home. Cathy then turned to my parents and said to them..... do you know how lucky you are? 

Cathy then proceeded to tell me that I need to take care of myself! I personally love these lectures because I naturally know it is true, but it is neither feasible or practical. I told her caregiving was only part of my life right now, but that I would spare her the rest of my heartache. I certainly did not have the energy to tell her about Mattie or the destruction of my 36 year long relationship with my husband. I told her there wasn't enough hours in the day for her to process the pain and hurt I live with. 

While my dad was undergoing surgery, I was entertaining my mom. I brought her cocoa, crackers, grapes, popcorn, and chocolate. I felt that would tie us over while waiting. In the process of waiting, my friend from England wrote to me. Remember I met her in an on-line support group. A group that I attended twice and then gave up. But from that group, I got connected to this woman who is living a parallel life to mine. But in England. It is uncanny how similar our issues are and therefore it makes it easy for us to identify and understand the heartache. 

Both of us walk and navigate the world in total shock. Mind you she is in year two! We have all the classic signs of having psychological trauma. We both live as if we are broken records, as our needle is stuck in our trauma stories. She was beating herself up today about this, and then I told her my night time routine. Just to help her see she isn't alone. I explained how I go to my bedroom, and immediately head to the window. I sit on Indie's cat perch, and scan for Peter. I continue to hope he shows up and I don't want to miss him. I understand this is not realistic. I understand that most people would say.... snap out of it, or this is not in your best interest. I get all of this, but feelings are not always logical. 

The loss is deep and cutting. It defines me, it makes me question my past, and it has decimated my future. But here's the thing. That may sound crazy, but to me it is how the brain, heart, and spirit have to cope and manage with such a traumatic loss. Naturally if my friend and I have these conversations with others, they may not get it. But we get it all too well and we can handle the mixed bag of emotions we are facing each and every day. 

Back to my dad's story. When my dad was in phase two of recovery, his nurse called me and told me we could come back and see him. When I walked into his room, he was sitting in a flood of pink urine (blood tinged urine from his procedures). In addition to that he was shivering and freezing. I pressed the nurse's button and got introduced to his post-op nurse! Who was a disaster. She told me she was busy, and couldn't help me. I told her that while she was off being busy, I was going to change my dad and get him cleaned up because this was unacceptable! She walked out of the room. She did send in two other nurses though to help me. I wish I could say her attitude improved over the course of the evening, but it didn't! She handed me his discharge paperwork, and I was left to get my dad dressed. My dad is 185 pounds and coming out of anesthesia. Which meant he was even harder to move and deal with than usual. I managed, got his depends on and all his clothes, and even transferred him to Mattie's wheelchair. ALONE! AMAZING the state of healthcare, or lack thereof! 

While driving home, my dad was moaning. I asked him if he was in pain or to tell me what was going on! He couldn't. However, I quickly surmised that he pooped in his pants. So as soon as I got home, I had to unpack the car, get him in the house, clean him up, get him started on Advil and other meds, and then deal with the cat, mail, boxes of supplies that were delivered today, and of course we all needed to eat. I am very grateful to my close friends who give me gift cards to DoorDash! They were put to good use tonight, because cooking wasn't going to happen. 

Monday, September 23, 2024

Monday, September 23, 2024

Tonight's picture was taken in September of 2005. Mattie was three years old. That day we took him to a park to walk around and explore. How do you like this sight??? This was typical of Mattie. He would find things in nature and then want to take them home. This big log was almost Mattie's size. When I see this photo, it makes me want to laugh! 

Quote of the day: I thought I was your destination. Looks like I was just another stop on the line. ~  Neil Gaiman

This photo was taken in the summer of 1989. Peter and I were taking summer classes at Union College, in upstate NY, and we happened to be staying in the same dorm. Though we were in our college's choir together, it was during that summer semester that we truly got to know one another. 

The story of how we met in that college dorm was something that Peter recounted often to people! In fact, Peter told it in such a way that people were typically glued to the story and then landed up laughing. Mainly because it is a funny story! Peter knew who I was before that summer, but I had no idea who he was. He saw me in the dorm's kitchen, by the sink washing grapes. He decided to come in and talk to me. Being that he did not know how to start the conversation, he basically said to me.... How is choir? I literally looked at him and said, why do you want to know how choir is, you aren't in choir! No matter how many times Peter told me he was in our choir, and he even told me where he sat and who he sat with, I did not believe him. At that point, we marched down to my friend, Dave's dorm room, and we asked him..... Dave, is Peter in choir? Dave responded with.... YES Vicki, Peter is in choir. Rather embarrassing no? In any case, this is how our relationship began. 

I was at summer school with several friends and Peter became part of our network. Once that summer session was over, many of our friends were coming out to visit us in California. So I invited Peter and he had the opportunity to meet my parents and grandmother that summer. I will never forget that moment in time, mainly because I am friends with many people, but until that point, really did not care for a guy enough to date him, much less let him into my life. Peter was different. During that trip, we also toured San Diego with our friendship group, and I recall as we were driving back to Los Angeles, where my parents lived, and during that drive Peter was sharing with me what our life could look like and the wonderful future we would have ahead. I can still picture that moment and that feeling. As it was magical. We had so many hopes and dreams. 

Peter has been in my life for 36 years. Not one, two, or ten years. 36! He is much a part of my life as my left leg is attached to my body. Today marks the one year anniversary that Peter left me. I would like to say now with 12 months behind me that I am stronger, happier, and more stable. I AM NOT! Frankly I do not think I will ever get over this traumatic loss, as I have lost Mattie and now Peter. My life has been decimated, my ability to love, trust, and live life are diminished. 

All I know is what I am experiencing now is NOT the Peter I have known all my life. I know in time, I will put the pieces together. As any parent knows, when our children do things that aren't good or they exhibit bad behavior, we aren't happy with those decisions and choices, but they are our children and with that comes unconditional love. In so many ways, I feel the same way about Peter. My love, care, and support aren't like a light switch. They don't get flipped on and off. I remain consistent.

Two friends reached out today to remind me that I am worthy of love and respect. That I am special. I will reflect on that, because here's the irony of all of this.... through this year long separation, guess what my focus and worry has been about? If you guessed, Peter, you would be right. I have truly hoped that he would find it in his heart to communicate again, to let me in on what is going on, and for us to find a way forward. It is just devastating to have lived a year without the person I devoted my life to and to try to understand this reality. I take it one day at a time, because if I think about the full picture of my future, I may not make it until tomorrow.  

I had to take my dad for a pre-op exam today with his doctor. It was a challenging visit, because as soon as I got my dad into the office, he pooped in his pants. I had to do a full clean up, and naturally with all of his movement, his hands and legs were covered in poop. After that horrific scene, we then moved into an exam room. The doctor wanted him up on an exam table (it took three of us to make that happen), because we are concerned about his extended abdomen. I knew it was nothing serious because my dad has had one CT scan after the other. But it is a concern that my dad never feels hungry, eats very little, and has at least five bowel movements a day. It was quite the exam, which included taking blood, an exam on the table, and an EKG. Getting blood from my dad is no easy feat. He has "jumpy" veins. Which means they can poke him where they see a vein, but as soon as the needle enters his arm, his vein jumps away from the needle. So my dad is never just stuck once or twice with a needle..... try several, until his veins are accessed. Any case, the doctor thinks these multiple bowel movements may be the result of his diabetes medication. So we are stopping it for two weeks and seeing how that goes! He also feels that my dad's extended abdomen is just muscle poking through, but nothing serious. 

Any case, we head back to the hospital on Tuesday for his second cystoscopy, ureteroscopy, and lithotripsy procedure! He will also get his ureter stents replaced. I can't wait until all stents come out and I am hoping that will happen in October. Wish us luck. 

Sunday, September 22, 2024

Sunday, September 22, 2024

Tonight's picture was taken in September of 2004. Mattie was two years old and Peter's parents sent him this ride on fire truck. Mattie loved all things with wheels. He just naturally gravitated to them! Our commons area in the city was the perfect place to ride these toys, to fly a kite, and to learn to ride a bicycle. I will never forget this space! This ride on fire truck got a lot of use. Mattie would ride on it, push it, wash it (like in a car wash), and he involved it in his creative play. 

Quote of the day: Even though you may want to move forward in your life, you may have one foot on the brakes. In order to be free, we must learn how to let go. Release the hurt. Release the fear. Refuse to entertain your old pain. The energy it takes to hang onto the past is holding you back from a new life. What is it you would let go of today? ~ Mary Manin Morrissey

I totally understand the sentiments of tonight's quote. But the thing is, it just doesn't apply to me. I don't want a new life, as a new life means putting all my hurts somewhere. I will never be free, I will never be able to release the hurt or the fear. I know from which I speak, as I already am living with the traumatic loss of Mattie. Some traumas can't be packaged in a box, shipped out to sea, and dropped off permanently. They are a part of me, and once again, I face the impossible.... how to live with all of this hurt. 

This morning, my goal was to do another hour of continuing education. That never happened. I got myself so worked up with bill payments, that I sat down and started a flow chart of money and bills for October. In my office, I have an area where I stage bills that have to be paid, and with each day, the stack rises. Which only further spikes my anxiety. So for two hours, I sat down and tried to map out expenses for this month. It is simply hateful. If this was the only stress I was managing that would be hard enough, but it is only 1/16th of my overall problem. 

Every Sunday I take my parents out to brunch. When I drive to the restaurant, I usually land up paying a toll each way. I am sick of that expense and decided to investigate how to get to this restaurant without a toll. Directions are another thing out of my comfort zone. But thanks to Waze, I was able to accomplish this task, because I am afraid reading maps isn't my strong suit. But I did it!

After settling my parents back at home, I had to flag all of our sprinklers on the property as the grass is getting seeded and aerated this week. The company asked me to flag all sprinkler heads so they are not damaged by the seeding truck. Delightful, but you bet I was going to do it, because I am NOT paying for new sprinkler heads. That meant I had to go figure out our sprinkler timer and turn it to manual. Thankfully when Steve, from our landscaping company, came over during the spring, I took notes on how to work the timer! Out came the notes this evening. I have 7 watering zones on the property, and literally I went zone by zone, getting soaked in the process. But the flags are up, and I can take that task off my to-do list. My dad heads for surgery again on Tuesday, so I will have my hands full with his recovery. 

This photo was taken on September 23, 2023. Peter did a 5k race with our neighbor that morning. He sent me photos and came home with a lovely medal (which I kept) and lots of gifts from the race. I was so proud of him, because he had lost a ton of weight and developed a wonderful running and walking routine each morning. Any time someone wants to better themselves and make such a life change, I applaud it because I know changing routines is so so hard. What I wasn't expecting that day, was shortly after coming back from the race, Peter packed up and walked out on our marriage. Now almost one year later, I can't say I am any less confused. In fact, I would say in my case, time has left me more hurt, more disillusioned, more confused, and deeply distraught.