Friday, July 26, 2024

Friday, July 26, 2024

Tonight's picture was taken in July of 2009. Mattie's child life specialist bought me a birthday cake, so that Mattie could give it to me. It was my last birthday with Mattie. Mattie is missed each and every day and if he were alive now, I can only imagine how he would feel about what is going on in my life. Mattie was a fierce protector of me, even as a child, so who knows what he would be like now at age 22?

Quote of the day: If love is like driving a car, then I must be the worst driver in the world. I missed all the signs and ended up lost. ~ Brian MacLearn

I took my mom for her six month doctor follow up. While at the appointment, I mentioned to the doctor issues I am noticing in my dad. My dad is very fatigued, which isn't noteworthy per se, but he also has labored breathing, even while at rest. I am noticing a bulge in his side, by his rib cage, and I assumed it was a hernia. The doctor is saying, no! Any case, he wants to see my dad and do blood work and scans. NOT what I wanted to hear. Doing any of these things with my dad is cumbersome and stressful. 

After this appointment, I went to the Mattie Miracle mailbox. Our box was filled with all sorts of things, but one item was a happy birthday card from my former neighbors in Washington, DC. This family and I knew each other for over twenty years, and I am very fond of them. I am deeply touched that they remembered me, and want to connect. It is hard to believe I only left the city three years ago, and yet so much devastation has happened in such a short period of time. 

Tomorrow I am meeting up with friends to celebrate my birthday. I haven't left my parents alone since they moved in, and in order to make this happen, I am preparing all sorts of things in order for them to manage while I am gone. It is hard to describe, but any change in routine for me is very difficult, and socializing is equally difficult. I am not myself and when I feel this way, I prefer to retreat from the world. 

Thursday, July 25, 2024

Thursday, July 25, 2024

Tonight's picture was taken in July of 2009. My last birthday with Mattie! That day, Mattie worked hard with my in-laws to create this beautiful lighthouse birthday card. Mattie visited many lighthouses with me and Peter's parents. Which was the inspiration for the card. So many wonderful memories are attached to lighthouses for me and I am so glad I shared them with Mattie. I wish this adorable face was still with me today, as I know he would be a force, ally, and a great support. 

Quote of the day: When one person is missing the whole world seems empty. ~ Pat Schweibert

Tonight's quote is so poignant. I am very grateful for family and friends who reached out to me through cards, emails, and gifts. It means so much to me, especially since this was a difficult day emotionally. While I was going through my morning routine, before I got my dad up and showered, my phone rang. My in-laws called to sing me "Happy Birthday!" For the last 35 years, my in-laws have done this and today was no different. This made me feel special and loved. What this shows me is that I am a part of the family, I matter to them and they value the role I served in Peter's life. 

While my dad was having his physical therapy session, I did a ton of chores. While driving, Alan Jackson's song, Remember When, came on the radio. I attached it below if you have never heard it. Typically I am too numb or stressed out to feel anything, but this song hit me like a ton of bricks. I was crying hysterically while driving, and by the time I got to the grocery store, I looked like I went ten rounds. The song perfectly captures the sentiments that I may have had when I first got married. Basically with the hope of growing old together, having a family, and always being there for one another through thick or thin. Alan Jackson's voice and lyrics just got me and it was like an electric shock going through my body.... what I have is gone. I will never understand how Peter can throw away 36 years of our life together and our history, and I also do not get how he feels that my devotion, faithfulness, commitment, and love is worthless and not fighting for. 

My parents gave me a card this morning. Within the card, I was surprised to get a note from my dad. It said,

Dear Vicki, Very Happy Birthday. God Bless you and I thank God for bringing you into my life. 

I think that says it all! Just when I think my dad isn't all there, he get its. 

We went out to the Cheesecake Factory today. We have gotten to know a wonderful server there. I did not tell Tammy it was my birthday, as I truly am not in a celebratory mood. My mom and I split a piece of chocolate mousse cheesecake. 

When I got home today, I was created with all these treats by my front door. Thank you Cheryl! Mattie would approve of this gift, as he LOVED Golden Oreos and the mini donuts would have been a total hit. I will enjoy working my way through all of these goodies. 

Some of the cards I received. If it wasn't for friends and family alerting me to my birthday, today would have been a big blur to me. When Mattie was diagnosed with cancer and we were going through treatment it was HELL. But here's the difference. We were together, fighting for a common cause, and united by our love. This abandonment is a different sort of HELL, but nonetheless HELL on earth. It is very unsettling to know that my last 36 years were a lie, that they may have mattered to me, but that's where it ended. It is devastating and frankly I am not sure I can or want to survive this mainly because when you give your trust to someone who is supposed to be there for you, who is supposed to love, respect, and honor your union, and then that person walks away, it transforms you, and not for the better. I have a very cynical view of the world and people in it.

Wednesday, July 24, 2024

Wednesday, July 24, 2024

Tonight's picture was taken in July of 2008, literally days after Mattie was diagnosed with cancer. Peter and I were traumatized and we were trying to be strong for Mattie. That day we took him to Roosevelt Island, our safe haven, and brought Mattie's remote controlled toy boat with us. Mattie had a good time floating his boat in the Potomac River. Prior to Mattie getting cancer, I wouldn't have thought to allow Mattie in the mucky Potomac waters, but given the circumstances, it was merited. When I look at Mattie's body now, I see the typical body profile of a child with osteosarcoma..... tall and lanky. 

Quote of the day: You can’t buy love, but you can pay heavily for it. ~ Henny Youngman

This morning, after dropping my dad off at his memory care center, I headed to the hospital for my first appointment with the breast surgeon. This was something my primary care doctor has been pushing me to do for over a year. This year, I finally gave in and made the appointment. I truly thought my primary care doctor was being an alarmist. Wow was I wrong! I got educated today, and realize she gave me EXCELLENT advice. 

In 2015, I was diagnosed with Atypical Hyperplasia. Atypical hyperplasia of the breast is a noncancerous condition that occurs when breast cells increase in number and develop abnormal shapes. It is a sign that I may have an increased risk of breast cancer in the future. However, after having a procedure to remove these abnormal cells back in 2015, I literally put this whole notion out of my mind! I naturally get my mammogram each year, and thankfully they have been clean. 

Today was a rude awakening. I learned because my mom had hyperplasia, I had hyperplasia, and very dense tissue, that this increases my risk for breast cancer. They actually did a calculation and told me that I have a 40% chance of getting breast cancer, compared to other women my age, who have a 9% chancer. I was listening, but I swear I thought they were talking about someone else. 

The doctor was lovely and soft spoken. We spoke about Mattie, his diagnosis, and his death. I explained to the doctor that other moms, whose sons died from osteosarcoma told me years ago that there is a correlation between moms who have sons with osteosarcoma and these same moms developing breast cancer years later. That conversation always stuck in my mind, mainly because I had it right in the middle of the hospital hallway where Mattie was being treated. The doctor told me today that there is NO DATA confirming this link, but what she did say is that STRESS associated with a childhood cancer diagnosis, treatment and death have been shown to be linked to the development of moms getting breast cancer. When they say stress is a killer, we are not kidding. As we were talking, I was welling up with tears. My life is so full of stress, hurt, and uncertainty now. All I could think of is if I get cancer, I am alone. I no longer have Peter by my side. Then in my next thought, I said to myself, if I get cancer, I will hold Peter accountable. As I have never been at a lower point in my life. 

Needless to say, I was going to have a mammogram on Monday, but she asked me to postpone it until October. Since I just had an MRI in June, she wants scanning to be further apart. So moving forward, I now need an MRI yearly, a mammogram yearly, a physical exam yearly, genetic counseling, and she talked with me about potentially taking a drug called Evista (used to treat osteoporosis), which has been shown to reduce the incidence of breast cancer by 50%. When I asked her about the side effects, my immediate reaction was NO! Possible side effects are blood clots, strokes, kidney disease (I don't need help in that department), muscle pain, hot flashes, etc. Once I shot that down, she then talked about more radical approaches like risk reducing mastectomies. Again, my answer was NO. Surgery comes with all sorts of complications and to me such an approach isn't merited with the data I currently have. 

I learned years ago with a cancer scare in my cervix, that jumping to have a hysterectomy made no sense. I lived through over a year of scans every two months back then. At the end of the day, I made the right decision not to have a hysterectomy, because it turned out I did not have cancer, but a benign condition called Nabothian cysts. I am not saying that surgery isn't important for cancer patients, it most certainly is and it can save lives. I am just saying that jumping into surgery without a logical reason makes no sense. So this was today's realization. 

I am not sure what shocked me more today. The fact that I am considered high risk, or the reality that I don't have my husband. That I lost my medical emergency contact and my list of losses and traumas just seems to be growing. 

Tuesday, July 23, 2024

Tuesday, July 23, 2024 -- Mattie died 773 weeks ago today. 

Tonight's picture was taken in July of 2008. That day Mattie had a bone biopsy to confirm that he had Osteosarcoma. You can see how swollen Mattie's arm was from the tumor. The one thing I quickly learned was that Mattie hated bandages. He despised the tape and removing them was great torture. Over that year Mattie was in treatment, there were many bandages and dressing changes I had to perform. I became an expert at removing all sticky stuff off of Mattie's body (the key is rubbing alcohol). In fact, I would say that I served the role of nurse, doctor, parent, friend, and play buddy throughout Mattie's journey. I would have had it no other way.

Quote of the day: One day you'll finally see, your biggest mistake was not loving me. ~ Nishan Panwar

A day NEVER to be forgotten, July 23, 2008! A day that changed our lives FOREVER! Sixteen years ago today, Mattie was diagnosed with Osteosarcoma (bone cancer). In July of 2008, Mattie was enrolled in a tennis camp. A week into the camp, Mattie complained of arm pain. We figured he sprained something or had a sore muscle from holding the tennis racket.

While enrolled in camp, I attended a conference in San Diego. Each night while I was away I checked in with Peter and I continued to hear that Mattie's arm pain wasn't getting better. Before leaving San Diego, I made a doctor's appointment to take Mattie in the day after I landed back home.

Fortunately Mattie's pediatrician took our complaints seriously, as I told her the issue had been going on for two weeks, with no improvement. From the doctor's office, we walked over to Virginia Hospital Center for x-rays. I admit that I got very frustrated with the radiology tech, because what I deemed should be an easy x-ray process turned into an hour long fiasco. THAT WAS THE FIRST CLUE SOMETHING WAS VERY WRONG.

After the x-rays were taken, the tech told me to go to a waiting room. I will NEVER forget this room. Mattie and I walked into a room filled with adults. NO hospital representative was in the room, only patients and ONE phone. We sat down and within five minutes the phone rang. NO ONE went to answer the phone, it just kept on ringing. So I decided to pick it up. 

On the other end of the phone line was the radiologist, who asked for Mattie Brown's mom. When I told him I was Mattie's mom, he then said I needed to go right back to the pediatrician's office. I said, ABSOLUTELY NOT! I wasn't leaving that room until he told me what he saw on those x-rays. He did not want to tell me, but I forced it out of him. So I heard that Mattie had osteosarcoma over the phone, surrounded by a group of strangers and Mattie staring at me. I tried not to sound alarmed but it's a bit hard after hearing...... your child has cancer.

July 23, 2008, was my first experience with medical trauma, and unfortunately that was just one of many traumas we experienced as a family. You maybe asking what's with these photos and the Christmas lights in July? Mattie requested that we take all our Christmas lights out on diagnosis day. He did not understand cancer, but he knew enough to know that something was very wrong and that the bright lights of Christmas may help lift all our spirits. The beauty of Mattie Brown..... you are dearly missed today and always. 

It maybe 16 years ago, but the pain of Mattie's loss is felt forever. Our lives and future have been permanently changed. We will never forget. Mattie's legacy lives on brightly as he has taught me that Childhood Cancer is NOT Just About the Medicine!

Of course this is a day I will always vividly remember. But this was the first anniversary I had to acknowledge without Peter by my side. Not only was he not by my side, but he did not contact me at all to reflect on this day. That alone is a very sad commentary, as Mattie's life is worth remembering, and what this tells me is that I ALONE must continue Mattie's legacy. A mother's love is forever and never wavering. 

This afternoon I took my parents out for frozen yogurt. I had to do it earlier in the day because I was expecting our Verizon tech to visit by 3pm. While at the yogurt store, I have gotten to know the manager. She is a lovely woman, with multiple children, and she is a cancer survivor. Her birthday is also July 25th. She gave me free yogurt today for my birthday and she told me that God sees everything I am doing. She sees me weekly with both of my parents and watches what I juggle. Since Mattie was diagnosed, I do question God and his plan. His plan hasn't been kind to me and right now maybe one of his worst chapters yet. 

Shortly after I got home, our Verizon tech arrived. I call him my Verizon Angel. He is the best tech ever. His family is from Harlem, and we share a NY connection. He prides himself on delivering quality service and understands how important the TV is to my parents. In fact, he squeezed me into his day in order to help me with cable boxes that aren't working well. We got an upgraded service today, he helped me learn how to use the new remotes, and I truly am grateful that I have a host of people I can reach out to, to help. I need it, because what I sorely realize on any given day is that I am alone. I am alone to navigate the impossible. Thank goodness for my Verizon angel. While dealing with this angel, another angel rang my door. Steve is one of our lawn care people. He knows what I am dealing with and personally comes by on a regular basis to check in on me and to see how he can help. Two angels in one day, Mattie is looking down on me for sure. 

Monday, July 22, 2024

Monday, July 22, 2024

Tonight's picture was taken in May of 2002. Mattie was one month old. I absolutely loved that Mattie dreamy face! A total cutie and I remember those eyes looking at me like it were yesterday. It is hard to believe that Mattie would have turned 22 this year. So many years taken by childhood cancer. 

Quote of the day: The human heart is the only thing whose worth increases the more it is broken. ~ Shakieb Orgunwall

As I mentioned before, I have developed a friendship with a woman in England. We met through an on-line support group. The group did not resonate with me whatsoever. I lasted two sessions and gave up. However, this woman and I bonded immediately. We have been chatting daily for months. She writes in the morning and I write, right before I go to bed. Honestly, we support each other, and we haven't even one another in person. This alone is amazing, as our situations are somewhat similar and we are both navigating through abandonment and caregiving for parents simultaneously. She sent me the quote below from one of her on-line support groups. It read....................

Most women are shocked and bewildered when their husbands turn from Dr. Jekyll to Mr. Hyde --- when the concerned, loving man you knew so well morphs overnight into an angry stranger. Why does that happen? You may understand that he doesn't want to be with you but why does he have to be mean? 

A lot of times men go through a complex process before they drop the bomb and they may have ambivalence. That makes them afraid that if they're too nice to you, they'll back down. They need to construct a powerful story in their heads of everything you did wrong in order to justify breaking up the marriage. Plus, they don't want to feel that they are to blame, so they make you the culprit and then act accordingly. 

If they admit that you were a good wife and it was a good marriage, then leaving you seems crazy, so they have to plead a case for the opposite. You don't need to believe your husband's version of your marriage. It just serves his purposes at the moment.

Here's the thing about this woman and I. We both deeply love our husbands and we cherish the bond we thought we had. Therefore, ironically, neither of us speak badly about our husbands. In fact, if you talk to me in person, you will find that I generally won't say negative things about Peter. Why? Because the person he has become is NOT the person I loved and was married to for 29 years, therefore, this new person is a foreigner to me. Not sure if this is just our defense mechanisms kicking in, refusing to accept that these changes are indeed a part and within the men we love. I just can't go there right now. It is too painful emotionally. 

It is a constant daily cycle of torture. Trying to make sense out of the unexplainable. Listening to me can sound a lot like a broken record. Not unlike working with a person trying to come to terms with a significant loss. The only way is to process, re-process, and share. But sharing with someone who understands the depths of this despair, I find deeply helpful. 

This afternoon, I put my issues "in a box." This is what my friend in England and I refer to taking a pause from the heartache to regroup. To try to clear our minds. When I want to put things in a box for an hour or so, we go to Starbuck's. While at Starbuck's, I was invited by the staff to attend one of their coffee tastings. So I did and learned about light roasted coffees. Mind you I am NOT a coffee fan whatsoever. While trying to have my "in a box" time, guess who sat next to my mom and me?! A couple who is in the process of going through a divorce.

I tried to mind my own business, but listening to them was painful. From an outsider looking in, one may have thought the husband was a good guy. After all he was talking calmly, taking notes, and not raising his voice. While the wife was emotional and beside herself. At one point she cried, he had no reaction. However, what caught my attention was two things. She got a phone call at the table. He asked her..... who is calling you? She wouldn't answer. She basically said, I will talk to this person later. But the call came in again. At that point he asked.... who is on the phone that you don't want me to know about? She finally answered! It is a non-profit to help battered women. All I know is I went from my "in a box" time, to being OVERWHELMED with these two individuals sitting right next to me! 

The scenario that played out right before my eyes remains me with tonight. I am thinking about all women affected by abandonment, separation, and divorce. The pain and loss of one's future disintegrating, and the past being wiped and swept away, are so hard to describe that words can't do it justice.  Simply, THERE ARE NO WORDS.  

Sunday, July 21, 2024

Sunday, July 21, 2024

Tonight's picture was taken in July of 2002. Mattie was three years old and I worked hard to get him to spend a few minutes on his back and tummy (as recommended by his doctor). Both of which he disliked intensely. Mattie preferred to be upright and on his feet! If he could have walked at age three to six months, he would have! To me, he had the most precious profile and his nostrils (if looking up his nose) looked like a heart. What a beautiful baby! 

Quote of the day: The worst feeling in the world is when you can’t love anyone else because your heart still belongs to the one who broke it. ~ Unknown

We took Karen to the restaurant we go to every Sunday for brunch. While at the restaurant, Cheryl, our server who I have gotten to know very well, told me that one of the managers asked her..... where is Peter? Cheryl did not say much other than we were in the process of getting a divorce. When I tell people we are getting a divorce, I get all sorts of reactions. ALL expressions of SHOCK! No one saw this coming, not me, family, or friends. 

I am not sure why I am so embarrassed about this abandonment, but I am. I took pride in our long term relationship, in the fact that we survived child loss, and established the Foundation in Mattie's memory, which has helped thousands of children with cancer. For the past several months, I have been dealing with one task after the other. As I have had a steep learning curve to manage finances, bill paying, managing my parents and their bills, taxes, and not to mention everything to operate this house. It feels like I have been hit by a tsunami. However, today a new emotion arose. A sense of longing and the feeling that I MISS MY PETER. Where on earth did he go? The pain or heart break is intense and internally there are times I feel like a caged rat. You know when the rat runs in circles, is anxious, and desperate to find a way out. This is how I feel!

I do not understand what is happening. NOT one bit. How can I feel this way and yet Peter is a happy camper and okay knowing how decimated he has left me???? There is nothing I wouldn't do to unearth the real answers and to find out where the man I loved for 36 years went. 

I am a bundle of emotions these days, which sometimes makes it hard for me to connect with people. Karen visited us for four days and got to further experience my reality. This evening I drove Karen to Union Station and in true fashion it was chaotic, trains were cancelled and I honestly thought I would have to drive back to Washington, DC and pick her up tonight. It was very stressful for Karen and I was on the highway driving home, while she was dealing with the chaos. Fortunately she is assertive and befriended other passengers around her and together they figured out how to board another train. But it was all very unclear and at the end of the day, I am saddened for older adults and others who were unable to advocate for themselves and were left stranded at the train station. Amtrak has to do better! 

Look at this beautiful pop up butterfly card my friend Junko gave me. It is so special, I put it on one of my memory shelves in my office. Junko came into my life in 2007, when Mattie started kindergarten at a new school. Our boys got along and my connection with Junko is one of the gifts Mattie left behind for me. All of Mattie's nurses knew Junko, because when she visited me in the hospital, she brought with her beautiful lunches and gave me neck massages. She and her mom also painstakingly folded 1,000 origami cranes for Mattie (with prayers said as each crane was folded and created). To this day, these cranes are in my office. Once again, my life is a mess, but, Junko continues to be there for me. I truly would like to know why on earth is my life in a constant state of trauma and tragedy? 

Junko's butterfly card sits right next to this antique fan. The fan is made of feathers. My mother in law gave me this fan when I was getting married. Yes I have had it on display in our home for 29 years. I  just can't believe that I have the fan, but not my husband. 

Dear God, give me the strength to find a way to manage the host of emotions I feel over the loss of Peter. 

Saturday, July 20, 2024

Saturday, July 20, 2024

Tonight's picture was taken in July of 2002. Mattie was three months old. Literally Mattie's car seat came with us everywhere! Why? Because it was the only thing he did not mind sitting in. Otherwise, Mattie preferred to be carried around by me, which was fine, but not practical 24/7. All I can say is I will never have regrets. I gave Mattie my undivided attention, time, and love and in the process, he gave me a lifetime of memories. He's unforgettable. 

Quote of the day: Each night I put my head to my pillow I try to tell myself I’m strong because I’ve gone one more day without you. ~ Unknown

One day I did a google search about husbands who abandon their wives, and I came across this family counselor named Vikki Stark. She has her own story and from her own experience she started to do research and landed up talking to countless women all over the world who face this phenomenon. One of the books she wrote is Planet Heartbreak. I started reading some of the chapters, each written by a different woman whose husband left her and in each case, each wife had NO IDEA this was coming. NONE! I am sure it is hard to believe because we as human look for logical explanations, reasons for bad things happening, and frankly I would be thinking this right along side of you. However, I unfortunately am living this reality and know that the unexplainable can happen without warning. 

Any case, I flagged three chapters which I read to my mom and Karen this morning. Why? Because what these women were describing sounded SOMEWHAT familiar to my story. Not the same, but there were eerie similarities. What I did not like about the book is that each chapter doesn't delve into causes, explanations, or more reflections from each of these women that could be of great help to the reader. Nonetheless, one chapter in particular was deeply honest. Now a year later, this woman is NOT the same, she emotionally doesn't trust people and has no interest in ever getting involved with another man. BINGO! Someone who is honest! After all when you give your heart for decades to one person and then find out that this person neither loves, respects, or values you, it does a number on your mind, heart, and soul.   

Today's adventure was a trip to the Dairy Queen. This is another thing I used to do often with Peter. Especially on all our trips to the beach! It was on our first beach trip to North Carolina, that I was introduced to Dairy Queen, and I have been a fan ever since. Life seems better with a Blizzard. 

Karen and I both had a chocolate brownie extreme Blizzard!

My mom had a hot cocoa Oreo Blizzard!

My dad loved his frosted animal cracker Blizzard. 

Our selfie! 

At any given moment, I can be a bundle of different emotions. For the most part I can fly off the handle or I can feel very sad. Truly it is emotionally exhausting and honestly I would love a day, week, or month break from this heartache. But that isn't how it works. 

We all had a nice dinner together. I made shrimp scampi, arborio rice, and a stew of summer squash, zucchini, tomatoes (which Karen brought from a NY farmer's market) and my garden basil and oregano. 

Some times when I do things around the house or outside of the house, I think of Peter! I think..... oh I have something to tell him, to share with him. But then that wave of reality hits and I know, forget it, he doesn't want to hear from me and once again, sadness prevails. 

Friday, July 19, 2024

Friday, July 19, 2024

Tonight's picture was taken in July of 2002. Mattie was three months old. Someone sent us this bouncy seat for Mattie, which played music. The notion of this chair was fabulous in theory, but unfortunately it wasn't up Mattie's alley. Mattie disliked being seat belted into anything, and he always wanted his legs dangling and able to move about. So this chair was very short lived in our home.

Quote of the day: To fall in love is awfully simple, but to fall out of love is simply awful. ~ Bess Myerson

Today I took my parents and Karen to Chez Francois. This is a special restaurant in Great Falls, VA. They offer four course menus and they have a beautiful patio setting, surrounded by gardens. They grow many of their own vegetables that they highlight within their menus. 

For many years, Peter and I dined there on our anniversary. I won't lie, sitting on the patio today was bittersweet. It reminded me of so many happy times, a time when I thought my marriage was forever. I never questioned that reality. 

I started with a trio of salmon. 

Then had their garden tomato salad. 

Followed by soft shelled crabs. 

The four of us! My dad is getting to be a very picky eater. He used to love all sorts of foods. Now the only thing he wants to eat is shrimp. So thankfully today they made him a shrimp entree which wasn't on the menu. 

We celebrated my birthday a week early. I assure you the last thing I want to acknowledge is my birthday and I definitely do not feel like celebrating. NOT ON ANY LEVEL. 

Our lovely waiter snapped this photo of me!

When I got home today, I was inundated with messages from my lawyer. All of this makes me sick with sadness and anxiety. I then went to cut a cantaloupe and in the process cut the skin right off my thumb. It took me about 40 minutes to stop the profuse bleeding! I chalk this up to being exhausted and heart broken. Each day I wake up and then go to bed with the same question...... HOW DID THIS HAPPEN TO ME?

Thursday, July 18, 2024

Thursday, July 18, 2024

Tonight's picture was taken in July of 2003. Mattie was one year old. Mattie desperately wanted to learn to walk! He hated the notion of crawling and never did it. Even as a baby, he wanted to put weight on his legs and move. But by this stage, Mattie would try to take steps independently holding onto furniture, the staircase, or anything sturdy.

Quote of the day: Once you had put the pieces back together, even though you may look intact, you were never quite the same as you'd been before the fall. ~ Jodi Picoult

Tonight's quote is 100% correct! I may never be the same. There are times when a wave of  sadness, despair, and anxiety over takes me. In those moments, I see NO WAY forward. I see no meaning or purpose in life. One could say how is this possible? It is possible because the love I shared with Peter for 36 years was real and was the one true thing.... my given, that I knew would always be there. UNTIL IT WASN'T! 

Accepting his choices and decisions have been a steep learning curve for me. Naturally I do not want to be with someone who doesn't love me, but the problem is I did not see this coming. There was no preparation and I reflect on the fact that we bought this house together, we moved my parents across country to be with us, and we put our hearts into transforming this house. 

I read and reread many of Peter's cards and notes that he has given me. NOT from years ago, but from last year and the year before. I literally have post it notes from him all over the house, which he would leave for me whenever he went on travel. They are in my closets upstairs and downstairs, I see them daily. I am a person who observes patterns and absorbs people's thoughts and feelings. The problem here was there was NO pattern to observe! NONE, and I continue to be in a state of shock.

Today, my lifetime friend, Karen, came down from NYC to visit with us for a few days. Our good friend, Junko, picked up Karen at the train station for me and then we all met for a lovely lunch. The one thing that was conveyed to me at lunch was that people know my character and loyalty. If you know anything about me, then you know I am loyal to the end. I don't give my love away easily, but once you are part of my world, I try my best to be there always for you. Now of course, I can hardly be there for myself, much less anyone else. Caregiving around the clock for three years and Peter's abandonment have done me in. 

Karen is a breath of fresh air in our house and she is good stimulation for my mom. So who ever engages my mom and is supportive, to me is a blessing. I introduced Karen to my stick and branch clean up routine. She couldn't get over how much we picked up, given that I did a sweep of the property yesterday. Literally I can collect a large garbage bin of branches daily. Fortunately for me it is my therapy! So, bring on the branches.   

Wednesday, July 17, 2024

Wednesday, July 17, 2024

Tonight's picture was taken in July of 2002. Mattie was three months old. Back then all the rage was to giving your child "tummy time." So this was what I was attempting to do, but one thing Mattie despised was being on his tummy. So I tried time on his back and then time on his tummy. Overall, Mattie preferred being upright and after a while, I followed Mattie's cues and not the two cents I received in the doctor's office. 

Quote of the day: I wanted love to conquer all. But love can't conquer anything. ~ David Levithan

I am in a state tonight. So much so that I can't eat and when I get into this mood, I spiral down hill, because I see nothing positive. No end in sight to this pain. Perhaps tomorrow will be a better day, however, given my ten month trajectory, I have no hope for that actually happening. 

This afternoon, I took my mom out for tea. While out, I got a call from her long term care insurer. I have been fighting this company since January. I literally gave up on them because we got to an impasse. They will not provide her with any benefits unless she is institutionalized, works with a caregiver from an agency, or is enrolled in an adult day care. Since those options are not viable for my mom, I have been stuck. I can't tell you how I have been advocating since I applied to activate her policy. Today, I got a call from a whole new care coordinator. Literally I yelled at her for five minutes, but once I finished, she was incredibly kind. She understood my frustration, understood the work that I am doing for both of my parents, and is now trying to work with me to explore my mom's policy. All I can say is she is my new angel! Someone who values the family caregiver. She was the positive of my day. 

When I got home, I was back at it with Amgen. Desperately trying to get my $1,500 co-pay that has been lost in the ether. I at least have a wonderful contact there, who is tracking this with me! He wants me to give it to July 24, with the hopes that a check magically pops into my mailbox by then, so I can finally pay this huge bill!  

In between multiple tasks, I baked banana chocolate chip muffins and homemade brownies. My lifetime friend, Karen, will be visiting for the next couple of days, so I wanted to make a few things. Overall, my life is chaotic, I have a range of emotions, and tonight, I was so upset, I couldn't eat. Literally the only thing I can do when feeling this way is walk, take on tasks, or garden. GOD... give me strength and provide me with a glimmer of hope to carry on.