Saturday, June 1, 2024

Saturday, June 1, 2024

Tonight's picture was taken in June of 2005. Mattie was three years old. This whale of a pool was given to Mattie by Peter's mom. He enjoyed this pool so much on his trips to Boston, that she gave it to Mattie to use whenever he wanted. I can't tell you how many times we were out on this deck, playing, during all seasons of the year! Truly it isn't the size of the space that matters, it is the time and creativity you share together. Life with Mattie was filled with activity, learning, and exploration. He will forever be missed. 

Quote of the day: The shattering of a heart when being broken is the loudest quiet ever. ~ Carroll Bryant

This morning my dad's physical therapist came over for a session. Though I have to get up early in order to make these Saturday sessions happen, it is worth it, because it gives me the opportunity to interact with someone and to have a diversion from my usual nightmare. Weekends are very hard times for me because there is less structure and I have my dad full time along with my mom. 

As summer is quickly approaching, it makes me remember many of my summer trips to the beach with Peter. When I reflect on these moments, it is almost like someone has stabbed me in the heart. I literally have physical pain just thinking that I will never have these moments again. In addition, I am working on a 15th anniversary video for the Foundation. Naturally in order to do this, it requires me to cull through many, many photos. When I look at them, I ask myself how did all of this happen in my life? How did I get to where I am now? I have no answers.

So overall, it has been a hard day emotionally, but of course I can't retreat. By mid-afternoon, my mom wants to go out. Given that the weather is beautiful, I decided to take them for frozen yogurt. When we got to the store, it was super crowded and there was no place to sit. Therefore, I did not even get my dad out of the car. Instead, I kept driving and took them to Dairy Queen.

I have been a big Dairy Queen for years. That too reminds me of all my beach trips with Peter. It used to be the highlight of my summer. Now it is simply bittersweet. 

My brownie batter blizzard. If you have never had a blizzard, I highly recommend you try it! 

My dad is not into blizzards, but instead wanted a sundae. He is all about the peanuts. Dairy Queen uses Spanish peanuts and my dad loves them. They are a little smaller and have a nuttier flavor. 

Three things I am grateful for:

1. A Dairy Queen Blizzard

2. Sitting outside with Indie, the cat!

3. Seeing butterflies and hummingbirds in my gardens. Mattie is with me. 

Friday, May 31, 2024

Friday, May 31, 2024

Tonight's picture was taken in May of 2005. Mattie was three years old and that afternoon he was enjoying his time on our deck. I can't tell you how many things this small deck held, everything from a frog sandbox, a pool, to a table and chairs and a BBQ. We made great use of this small space and I always called it my secret garden in the city. Love that smile!

Quote of the day: There are many ways of breaking a heart. Stories were full of hearts broken by love, but what really broke a heart was taking away its dream — whatever that dream might be. ~ Pearl S. Buck

It was another busy day on the farm. After dropping my dad off at his memory care center, I went grocery shopping, got home put it away, dealt with laundry, and then did my follow up call to Amgen. Just as a recap, I have been working for the past three weeks trying to get access to my $1,500 copay for the drug, Prolia. My copay was sent to the wrong company, and trying to get my money back has been a total nightmare. When I tell you I have been on the phone for hours to address this issue, is NO exaggeration. Last week, I spoke to the specialty pharmacy that was the recipient of my $1,500. I was on the phone with them for three hours. YES three hours. They assure me that they returned my copay to Amgen, however, guess what? As of today, Amgen still can't find the $1,500! When I tell you I almost done with this, I am not kidding. I can see why some patients may just give up and pay the $1,800.

Any case, today the representative on the phone was delightful. She could see my call history to Amgen, and how diligently I have been working to get this resolved. She put me on hold and she immediately contacted her supervisor. Make a long story short, she and the supervisor will be getting back to me and are escalating my issue up the food chain. I have supplied all the documentation they need and they understand the problem accurately. When I tell you this was a refreshing conversation versus the one I had last week with the specialty pharmacy, I am not kidding. So today, I am thankful to Autumn, the drug company representative. 

Mid-day, I took my mom to Starbucks. I am there so many times a week, that I know the manager, everyone working there, and I even know the regular customers. I am very grateful that everyone working in this store is kind and truly customer focused. They know my routine so well that on days I have my dad in tow, they remind about things, I may have forgotten to order. I know this all sounds crazy, but Starbucks has become our therapy. It gets us out of the house, we try to put our stresses, sadness, fear, and anxieties on hold to regroup. Some days, my mom and I talk about what's going on, and some days, one or both of us gets upset. But overall, it is a time where we can just be, without having to focus on my dad, his bathroom trips, and countless needs. 

When we go to Starbucks, I have always have a book with me. I am trying to digest this one book on ambiguous grief. I take it a little bit at a time, as I sometimes agree with the content and other times I just pause and say.... really? Today, however, the chapter I was reading about was talking about external hope versus intrinsic hope. Hope is one of those tricky concepts for the ambiguous griever. Because we haven't lost someone to death, our loved one is still alive, therefore most of us live in hope. Hope may look different for each ambiguous griever, but the bottom line this author was making was that the only way to stabilize and move forward with such a trauma is to transition from external hope (which are things we hope for that are out of our control) to intrinsic hope (things we do for ourselves and what we have control over). I have been absorbing these concepts of hope for several days now. Given that her book is based on a study of 400 ambiguous grievers, what she is reporting and her insights do capture my attention. 

I am one of the people she discussed in her chapter who cycles between external and internal hope. I can wholeheartedly identify that in myself, but what I do know is that I have internal resources. Whether I want them or not, I developed them tenfold when Mattie died. Therefore, trauma, grief, and such pain are not new concepts to me. This does position me in a better place than the average ambiguous griever. So leave it to my life's greatest teacher, Mattie, for helping me once again. As I need to dig deep once again and focus on what I do have, what I do bring to the table, and what I can control in my life. That is today's positive spin. However, it could change tomorrow. 

Three things I am grateful for:

1. Fresh herbs! I used many of the herbs I am growing in the backyard tonight to create dinner. Fresh basil in the corn and chopped into the baked flounder and fresh mint chopped into the string beans. 

2. I received this beautiful and heartfelt card from my cousin Maureen. Maureen has been a part of my daily journey for 15 years now! She is a loyal blog reader and an incredible lifelong caregiver. We have mutual appreciation for each other.  

3. I am thankful for Autumn at Amgen, for her listening today, reviewing my file, and advocating for my case behind the scenes! 

Thursday, May 30, 2024

Thursday, May 30, 2024

Tonight's picture was taken in May of 2005. What I love about this photo was it captured how Mattie felt about the stroller! I will never forget that we bought about five different strollers once Mattie was born. Mainly because I was desperate to find a form of locomotion he would tolerate. I couldn't always hold him, sometimes I needed my hands free! Turned out no matter how elaborate or simple the stroller, Mattie did not want to sit in it, ever! When we would take Mattie for walks, we took a stroller along, because at some point he wouldn't want to walk on his own. However, the only thing I would say about the stroller was it got good exercise from being pushed, not rode!

Quote of the day: No matter how bad your heart is broken, the world doesn’t stop for your grief. ~ Faraaz Kazi

This morning I met a friend at my local Starbucks. Something I rarely do! Prior to going, my mom had her physical therapy appointment. Today she was getting discharged from in-home physical therapy, which she has been doing since February. Thank goodness I was present for the appointment, as the therapist needed my help with completing paperwork and logistics. My mom can no longer do this on her own. In addition, I would say my mom is pretty strung out now as she sees what is happening with my own life, and it saddens her. 

When I left the house, my dad was headed for his physical therapy session. His therapist has been working with him for a year now, so she knows the drill. She also wants to support me leaving the house for a minute on my own. You would think that on my own, I would feel edgy, or worried about what is happening at home when I am not there. Honestly in my better days, I probably would have been, but now, I am so stressed out, that I am very good at blocking one thing out and jumping to something else. Perhaps that is a protective factor, I don't know, but it probably explains how I can manage so much trauma and stress on a daily basis. Because it is impossible to sit with what I am contending with 24/7!

This evening some neighbors got together. I decided to go. Honestly I need to follow my gut. My gut said don't go, and I listen and follow that feeling. For the most part, I find no comfort in associating with others. They can't possibly understand what is in my mind and heart (not that I share it), nor the grief I live with on a daily basis. In fact, the only thing this gathering did was further confirm for me.... I am different!!! I don't have children, I can't discuss schooling, internships, or even making dinner for the family. In fact, to add to that, other than my parents, I have lost the core family that I once knew and loved. So overall, NO I will not be taking part in such gatherings again. If it doesn't make me feel good, if it isn't supportive and nurturing, then I am just NOT doing it. 

The three things I am grateful for (and today I really have to dig deep, because the world looks gray to me):

1. I am having issues with the pool equipment. It was making a terrible grinding sound. I was sure something was wrong, which of course would mean something else I needed to FIX. I text messaged the daughter of the company's owner. She is absolutely fabulous, competent, and professional. She quickly came over, diagnosed the problem, and thankfully I just had to put more water in the pool. For now, a crisis has been adverted. I am very grateful for Ellery's kindness, and when I experience such kindness and help I take notice. 
2. This morning an alarm went off in the house, which reported that there was smoke in our second floor hallway. Literally dealing with such stuff frazzles me out. My mom was screaming and upset and of course I had to remain calm and work the problem. I went into the attic and quickly assessed all the rooms in the house. There was NO smoke and I have no idea why this happened. But as quickly as it started, it also quickly resolved itself. I am grateful for small miracles. 
3. Always I am grateful for friends who reach out and having friends who are walking this journey with me. 

Wednesday, May 29, 2024

Wednesday, May 29, 2024

Tonight's picture was taken in May of 2005. This was a typical sighting in our home.... Mattie LOVED trains. Actually Mattie loved all sorts of locomotion. I remember when I was teaching human development in graduate school, we would always debate in class whether children gravitated to certain toys and activities, based on nature versus nurtured. I learned first hand from Mattie, that nature ruled over nurture! Mattie taught me the art of playing with vehicles, building with blocks, Legos, and tinker toys. These were things I did not gravitate to as a child, but I rose to the occasion with Mattie. If it interested him, it interested me!  

Quote of the day: Hearts can break. Yes, hearts can break. Sometimes I think it would be better if we died when they did, but we don't. ~ Stephen King

We have been dealing with torrential rains the past few days in Northern Virginia. Given my previous experiences with this house, rain triggers a fear response. Shortly after we first moved into this house in 2021, I heard Peter screaming for me at 2am. I jolted out of bed to find him in the basement. He was trying to hold back the ocean, as rain was coming in through the basement door and by the time I got there, it appeared that we had about on inch of water! Literally we worked for about four hours removing all the water, drying the entire floor, walls, and baseboards. We then had fans going all over and sprayed Lysol for days. Because we addressed the water as it was coming in, we lucked out. We did not get water damage or mold. After that fiasco, we replaced the basement doors, to make them more water tight. We also fixed the outside drain by the door. 

Nonetheless, when it rains, it is vital to make sure that the drain is clear and not blocked by leaves or other debris that may collect around the drain. Thank goodness I had the where with all to check the drain yesterday! By the time I got downstairs, water was up to the bottom of the door frame. I quickly put on a rain coat and gloves and scooped up leaves and debris. I actually had to do it twice last night because of the deluge of rain. Now everything is far more daunting for me because I am facing everything alone. My parents maybe living with me, but they are incapable of solving problems and physically are unable to manage a solution. This alone puts an inordinate amount of stress on my daily existence.

I have been reading a book about ambiguous grief. Which is basically grief one experiences when a loved one is disengaged with you but is still alive. It is most definitely a different kind of grief, because your mind keeps rewinding, reviewing, and searching for explanations for this disengagement. Because the person you love is still alive, the griever lives with something that we usually associate with something positive, hope. The problem with hope is that it makes you circle around in bargaining, anger, and depression. Naturally there is NO hope for a griever whose loved one died. With death there is finality, there is no hope that this person is coming back to you. In any case, as I have been plugging away with this book, I was getting frustrated. Those of you who know me, know I do not do well with prescriptive information, how to's, and most definitely I do not relate to people telling me their story in hopes of pigeon holing me into their strategies for healing. In fact when I sense this is coming, I tune out. This book had me practically at this point, until I read today's chapter. 

She was able to put into words several of my feelings, one of which is "it's one pain to lose the future you thought you had in front of you, but it is another pain entirely to lose the past you thought you had lived." As I always say, I lost my past, I lost my future, and my present is horrific. So what's the point!? Most of us are quite certain of our pasts, our history. The experiences, thoughts, feelings, and people who helped shape who we are today. What happens when that comes into question? Without a past, there is NO solid ground for the present or the future. Any case, I have been feeling this way for months, which is unsettling, and what I was reading today is this is definitely what other ambiguous grievers experience and feel. It is very disorienting, makes you feel desperate for validation and to find meaning. 

I suppose the key to survival is learning to become accustomed to this uneasiness, realize it is very normal, and try to find a way to live each day with this grief. That is easier said than done, trust me. On any given day, I can feel like I am going crazy, to I am ready to jump out of my skin, or that I am 100% exhausted. 

Three things I am grateful for:

1. The basement did not flood!
2. Friends who check in and care about me.
3. Picking up a yard filled with sticks. It gets me outside, moving, and allows me to unplug from my thoughts and feelings. 

Tuesday, May 28, 2024

Tuesday, May 28, 2024 -- Mattie died 765 weeks ago today. 

Tonight's picture was taken in May of 2005. Mattie was three years old. That Saturday we took him to one of the Smithsonian museums which had a butterfly house. While walking about, an orange butterfly landed on Mattie's hand! Butterflies were attracted to Mattie. What were the chances this butterfly would be orange? Now looking at this photo, it seems symbolic to me, that Mattie was indeed a Mattie Miracle and even the butterflies knew it. 

Quote of the day: I don’t know why they call it heartbreak. It feels like every other part of my body is broken too. ~ Terri Guillemets

This morning, I got up at 5:15am because the HVAC repair person was scheduled to come between 8am and noon. Given that it could be 8am when the tech showed up, I had to have it together, breakfast made, and my dad up, washed, and dressed. Fortunately my dad went to his memory care program today, because it is hard to juggle him and repair people at the same time. While driving back from the center, I went to the post office and the Fedex store, and was listening to the radio. This woman on the radio was talking about her mother, who died several years ago. She was telling the audience that her parents separated and divorced over 25 years ago, but that her mother never got over the divorce. However, on her mother's death bed, her ex-husband showed up, held her hand and told her that he always loved her and that he made a big mistake leaving her. I listened carefully as I was curious of the daughter's reaction!

The daughter thought it was the most special gift her dad gave her mom. Want to know my reaction? My reaction was that this wasn't a gift to his dying wife, this instead was a gift he gave himself. He wanted a clean conscious and he did not want to miss the opportunity in a way to be forgiven. Yes that maybe a cynical reaction on my part, but in all reality, hearing the fact that she was loved served her no purpose as she was dying, especially as she was living with a broken heart for 25 years! Living and navigating life with a broken heart is earth shattering. So much so that I believe it has long term consequences on one's physical and mental health. Who knows how the ramifications of this divorce played out in this woman's life or whether it may have contributed to her early demise. 

After listening to this story, I then headed back home. It was early in the morning, around the time children are picked up by school buses for school. Well that reality also hit me hard. I could see countless parents at each of the corners waiting with their children. All the parents seemed to be socializing and from my perspective seemed so NORMAL! Of course I realize I can't judge a book by its cover, but I would deal with just about anything in order to have Mattie back and to know that my marriage was not a farce. 

Long story short, it wasn't a good morning. But the fun continued. I came home and realized I better call the HVAC company because I received no text message updates at arrival time. Literally I called the company three times. Each time I was more livid than the time before, especially since this was the third time I rescheduled this appointment in a week. By the third call today, I found out the tech wasn't coming until the 4pm to 7pm time frame. Which actually was a blessing since by 1pm, my mom gets squirrely and waits to go out. Thankfully the timing worked and I was able to take her out. The tech eventually came at 5pm. I knew her, as she had serviced my house before. 

What was the issue? Something simple! I apparently put batteries in the thermostat the wrong way! That was totally embarrassing and frankly I normally wouldn't make this error, but I am tired and on overload. Most people who come in the house can see the circus show I am balancing and the tech normalized this mistake for me! A kind soul. 

Three things I am grateful today:

1. A beautiful sunny day. 
2. Arlene, the kind HVAC tech!
3. Sitting outside on the porch with Indie, while waiting for dinner to cook. Indie sits in the exact same place on the couch that once belonged to Sunny! You can't say that is by coincidence!

Monday, May 27, 2024

Monday, May 27, 2024

Tonight's picture was taken in May of 2004. Mattie was two years old. That day we took a walk down to the National Mall. The beauty of living in the city, is it was easy to walk to all the National memorials and sites. Mattie was standing in front of the reflecting pool by the Lincoln Memorial. What was he looking and laughing at? Ducks! Mama ducks and her ducklings. As you can see I was holding Mattie's hand. For two reasons, one I did not want him to fall in the water (as I was always scared of him drowning) and two, I did not want him to jump in and follow the ducks. Mattie loved to see mama ducks and her ducklings, and sure enough he would always say that they reminded him of him and me. 

Quote of the day: And they can’t understand, what hurts more—missing the other person, or pretending not to. ~ Khadija Rupa

I was jolted awake at 1am today by an alarm. My neighbor, who is doing an extensive remodel for the last ten months, has had an alarm going off since Friday. It is an intermittent sound, so not constant. Nonetheless, I have been capturing it on video and sending it to the contractor as documentation. The sound is so loud that I honestly thought at first that the sound was coming from my own house. The problem with waking me up at night, is it then sets off a cascade of anxiety symptoms. I eventually got back to sleep, but I feel more out of it than normal. Which isn't saying much. 

This morning at 7am, the alarm went off yet again. Again, I video taped the issue and sent it to the contractor. The contractor came over and this time, he got to hear it for himself. The sound is coming out of the dumpster! That is right, the dumpster! Clearly someone from the construction team removed some sort of device from inside the house, and before disassembling it, just threw it in the dumpster. Naturally there is a ton of debris on top of this device now, making it impossible to grab and destroy it! So until this dumpster is replaced tomorrow, I am preparing myself for more alarms tonight.

After I got my parents settled this morning, I decided to do more Foundation work. I am trying to process through all donations that came in from our Awareness Walk. I always make it my personal business to reach out and thank every donor. I have done this since we began the Foundation, and I feel this personal touch is vital. Because I know full well, without our wonderful supporters, we would be unable to operate. Therefore, supporters are the life blood of our Foundation and I am honored they walk with me to keep Mattie's legacy alive and thereby help thousands of children with cancer in the process. 

The three things I am grateful for today:

1. Friends who reach out to me by email and text. Who are equally perplexed by my circumstances and validate that I don't deserve what is happening to me. 
2. Going out for Frozen Yogurt! The manager of the store gives me a discount each time. She sees what I do for my parents, and this is her gift to me. Her kindness doesn't go unnoticed. 
3. The wonderful cardinals in my garden. Each time I see one, I feel that Mattie is with me and is witnessing my sadness and despair. 

Sunday, May 26, 2024

Sunday, May 26, 2024

Tonight's picture was taken in May of 2004. Mattie was two years old and where ever I was.... so was he! Mattie loved when I picked him up and we danced together. Which is what you are seeing in this photo! Notice who Mattie was paying attention to.... not the camera, but to me! We had a very special connection, an unbreakable bond, we had very similar personalities and temperaments, and he was a fierce ally. 

Quote of the day: Heaven doesn’t ignore cries of a broken heart. ~ Toba Beta

In between tasks inside, I find that I escape to the garden to be one with myself. Away from demands, away from the TV, and in the wide open, not confined by walls. Last night, I spent hours in the front yard cleaning up the roses. When we bought this house in 2021, I was drawn to this particular house because of the land. The previous owners clearly loved plants and trees and someone thoughtfully started their gardens. However, they were not maintained well. This is where we came in! Peter planted roses in front of the house. They are a wonderful pop of color, but they require work. Given that I haven't been the one maintaining the gardens, Peter was, I have had a lot added to my plate this year. But I take it one flower bed and area at a time. Of course my joke is I can weed one day and the next day more weeds pop up and are staring at me! 

I can't think of my front walkway, without thinking of this watercolor created by a local artist, Kim Richards. I was in the process of commissioning Kim to generate four paintings of our home for our family room. As soon as Peter left in September, I put a permanent halt to this wonderful project. One of Kim's paintings was going to feature the front of the house with my Sunny! Sunny has left an enormous hole in my life and house. 

I snapped several photos of the gardens today! This is another one. This orange chair came with the house. However, it wasn't positioned here. Nor was it orange. It used to be a green chair. I had Peter paint it orange and move it to the patio area. Originally this chair was off in the bushes which are pictured below (where the oak leave hydrangeas are). 

Peter planted this rose garden for me. This requires a lot of work and maintenance. But it is a beautiful area and I can't tell you how much the birds love the fountain in the rose garden. They are all around me while I am snipping roses.

I am working on this area. We planted roses here this spring. When they fill in, it will look so much better. 

 

These roses were planted last year. They were as small as the roses I planted above. So once the above area grows in, it should hopefully look just like this one. 

The previous owner planted oak leave hydrangeas all around the property. They are a beautiful green screen and they bloom all summer long. The orange Adirondack chair (above) once sat in an amongst these hydrangeas. 

The sunny hibiscus are happy in the backyard. I planted them a few weeks ago. I have to admit that I bought them because of the name... "Sunny." A tribute to my beautiful tan and white boy! Never forgotten. 

Three things I am grateful for:

1. My gardens.

2. Sleeping in today until 7:30am!

3. Chatting with Cheryl, who is a fabulous person and server at a restaurant we visit every Sunday. 

My current life is very isolating, therefore, the people I interface with at Starbuck's and at restaurants, become part of my weekly network. I am sure they are unaware of how much their kindness, a smile, or a thoughtful gesture means to me. They are diversions from my daily misery, abandonment, and grief. I think the moral of the story is when we communicate with others, we need to be cognizant of the fact that our connection with another person maybe the only meaningful or thoughtful communication in that person's day. When you look at it this way, it does make you want to be more intentional about what you say and how you act.