Saturday, November 9, 2024

Saturday, November 9, 2024

Tonight's picture was taken in November of 2005. Mattie was three years old and that weekend, my lifetime friend, Karen, came down from NYC to visit with us. Karen was engaging and playing with Mattie. They built this tower of boxes together and of course Mattie decided to get up on our dining room table to both create this stackable but also to show all of us that he could be TALLER than the structure he just built. Since Karen teaches teenagers, she knows all about creative ways to get kids to apply themselves and participate in an activity. So happy I snapped a photo of them in that moment in time. 

Quote of the day: What is a God Wink? An event or personal experience, often identified as coincidence, so astonishing that it is seen as a sign of divine intervention, especially when perceived as the answer to a prayer.

It has been another winner of a day. However, tonight I opened up my e-mail and was introduced to Roxy! Years ago when I was looking to adopt a dog, I signed up on several sites to receive adoption information. Of course, I found my Sunny through Facebook of all places. But I still receive emails from a couple of adoption sites. 

Sometimes a dog's face just speaks to me! That is how I felt about Sunny! I knew I would love him, his photos spoke volumes to me. If my life looked different right now, if I had more financial and emotional stability, I would be putting in an application for Roxy. As I learned when I adopted Sunny..... I may have adopted him, but he saved me. He re-engaged me back into the world, and made me feel a part of something. There is nothing like the love of a dog. Sunny's presence and spirit are missed daily. 

My plan was to go grocery shopping this morning as soon as my dad's physical therapist arrived. However, before I left, I settled my mom in the family room, because she looked exhausted. I got her in a chair, legged propped up, a heating blanket on, and then I turned on the TV. That is when the chaos began. I couldn't get the cable box to work. I kept getting a VMS (Video Management System) troubleshooting error. 

Since I faced this same error on our main TV two weeks ago, I knew I had to try to reboot the box, unplug and then plug in chords. But then I realized I had to call Verizon, the problem was over my head. I was on the phone with Verizon for an hour. Poof, there went an hour from my life! Needless to say, Drew, the cable miracle worker, got the system working again. He introduced me to my VMS box in the house, showed me how to clean the coax cable and restart the system. This is the beauty of remote monitoring and a video phone call! 

After that issue, I ran out to go grocery shopping. I dislike shopping on a Saturday because stores are always crowded. But I had no other choice, as I couldn't go during the week. Because I know this store well, I zoom around from one aisle to the next. You truly don't want to get in my way when I am in this mood. Though self checkout has a maximum of 20 items, this store knows not to bother me, because I want to always do self check out and I always have more than 20 items. I have very little control in my life! Therefore, self checkout is one area I can control. I can control how things are bagged and I bag things in a logical way!

When I got home, I had to put groceries away, fold laundry, and then take my parent's out to lunch. We went to two different places. The first restaurant, I walked out of because it was too crowded and the person who typically serves us wasn't there! That may sound odd, but who waits on us, makes a big difference to our experience. The second restaurant, is getting to know us. I had a long conversation with the manager today, who is originally from Greece. He is only 28 years old and told me when he came to America, he landed in NYC. He couldn't afford living there, so was homeless for months. He described that experience and how he has now built a good life for himself. I love hearing these empowering stories!

For the past month, I have been watching Hallmark Christmas movies at night. The last time I was glued to Hallmark movies was when Mattie died. In fact, after his death, I could spend days in bed, just watching these movies. Why do I like Hallmark movies? Because there is always a moral message and there are NO unhappy endings. I have enough reality and pain in my life, therefore, I do not need to absorb it through my TV screen as well. 

Hallmark has a series of "God Wink" movies. As tonight's quote points out, a God Wink is a coincidence, but with divine intervention. The exact movie I saw was, A Godwink Christmas: Meant for Love. What I particularly love about the God Wink movies is that they are based on true stories. I would love to be transported right into a Hallmark movie. Where the love between a husband and a wife, is real, honest, and built on trust, respect, and commitment. To me, when I met Peter in college, it felt like a God Wink. I may always remain disillusioned, confused, angry, and sad that my perceived strong, vital, and healthy marriage, was actually only viewed that way by me. 

The main characters in the movie are Alice and Jack. One of the things Alice is facing in the movie is a diagnosis of Multiple Sclerosis. She did not want Jack to feel obligated to care for her, and therefore pushes him away. How they come back together is priceless, as he used big poster boards outside her apartment window to communicate to her. My point to this is, this is the kind of husband I thought I had. The kind that did not walk away under any circumstance. It is mortally wounding to know how wrong I was. 

Here is a link to the real Alice and Jack, who inspired this touching movie:

https://www.today.com/popculture/coincidence-love-first-sight-leads-amazing-reunion-after-50-years-2d79795750

Friday, November 8, 2024

Friday, November 8, 2024

Tonight's picture was taken in November of 2005. Mattie was three years old. This was not an unusual occurrence in our home. Mattie LOVED painting with his feet! I don't think this would have ever interested me, but since this was something Mattie enjoyed doing, I went with it. The beauty of Mattie was he understood that this activity had to stay within a box. As I did not want paint all over the floors, furniture, and walls. This wasn't a problem for Mattie because overall I think he was like me.... we both need organization and things around us to be clean. I can't tell you how many cards and notes we made from Mattie's footprints!

Quote of the day: Divorce is the one human tragedy that reduces everything to cash. ~ Rita Mae Brown

It was another 5:30am day for me. I have had three of them this week because of morning appointments or commitments. My 9:30am appointment today was with my primary care physician. In order to make it to the hospital in time, it required a ton of work and preparation. 

I have seen this physician for at least 20 years. She is my age! As I always tell her.... we grew up together! However, in December she is retiring. My doctor never married and doesn't have children. Though she is healthy and doesn't look her age, she has decided to move to another state to live closer to friends. These friends have invited her to join them, as they age together. I can't tell you how much her story resonates with me now. I may not have gotten the full ramifications of it before, as I always thought I would age with Peter. But as this doctor knows full well, most of us need support as we get older. Very few older adults can live independently without family or outside support. So though the notion of her retiring is a huge loss to me, I am happy for her. Her mom died from breast cancer, when her mom was only 60. So I think this loss has guided her life and also her decision to travel and live in the moment. 

Before my doctor came into the exam room, I had a nice chat with her nurse. Her nurse has been working with her for 15 years. I have had my moments with this nurse, but overall she is good at what she does and works very well with my doctor. I have followed this nurse's recovery from back surgery and the loss of her dad. Thankfully this nurse will remain at the practice and assist the new physician coming on board. My point to saying all of this is that whom ever I interface with and work with, I try to get to know. People are not just performing a task for me, instead, they are part of my network and world, and therefore, I take an interest in their lives. 

I gave my doctor a gift today and a card. The gift was a reminder of her incredible dedication, hope, and the big difference she has made in her patients' lives. Here's a funny story. When Mattie was a preschooler, I took him with me to see my doctor. Since I had no family locally, Mattie basically came with me where ever I went. So while waiting in the doctor's waiting room, Mattie observed my doctor moving about. He asked me if the person moving about was my doctor and I told him she was. His response was.... she's pretty! I recall that story all the time to my doctor. Keep in mind that Mattie's pediatrician was older and a bit of a curmudgeon. So in comparison, my doctor was definitely a breath of fresh air! 

So apparently 2023 and 2024, is all about change for me. Separation, Sunny's death, managing bills, house issues, car issues, my parent's medical care, caregiving alone, therapy, divorce, and losing my doctor. The list of losses just keep on going. When I saw tonight's quote, it seemed poignant. I would never have guessed that my long term 35 year relationship with Peter, would come down to sorting assets and be finalized in paper! I will never understand how this happened, why it happened, and better yet, I don't know how you go from being someone's everything, to a big OLD NOTHING. My love and commitment do not operate by a flip of a switch, which is why I can't fathom how anyone else's does!

Thursday, November 7, 2024

Thursday, November 7, 2024

Tonight's picture was taken in November of 2007. Mattie was five years old and that day in kindergarten, Mattie's tooth came loose and literally came out of his mouth and onto his friend, Tim. I can only imagine Tim's reaction! This was Mattie's first baby tooth to come out and I am so glad that his teacher was able to retrieve it and send it home with Mattie. As you can see, Mattie's teacher wrote this note and taped the tooth to it! Mattie was holding up the sign and I think he was more concerned about what this meant to have a missing tooth rather than excited about what the tooth fairy was going to bring him. 

Quote of the day: How many divorces are caused by the word nothing? I think this would be a very interesting statistic. ~ Sophie Kinsella

This morning, was another early morning, as both of my parents had their six month visit to the cardiologist. This doctor has been in our lives since 2022, when my dad needed an emergency pacemaker placement. This doctor is about my age and is Italian. So my parents relate to him and he relates to my parents. 

He is a very unique physician because he comes in and has a conversation! Not just for a minute or two, but several. Today he must have talked to all three of us for 30 minutes. NOTHING to do with medicine either! This man is devoted to his wife and his two children and today he told us that he met his wife when they were in second grade. He says that he knows she truly loves him because she fell in love with him before he had anything! We discussed his trip to France, his desire to get his Italian citizenship, and so much more. 

When I met this physician, I was legally married, and so most people perceive me as being in a stable relationship and also caring for my parents. I still wear my wedding ring, and this is by choice. So me some things are bigger than the law, and in the eyes of the Catholic church I am still married. To me being married, and for so long, is my identity. I have been a wife all my adult life, so whether the law tells me I am married or not, I know what marriage means to me and I know myself. This time in my life reminds me of when Mattie had just died. People would see photos of Mattie in my wallet (when I opened it up in stores), and it naturally led to conversations. Sometimes I handled the chatting well and at other times, I shut down. 

Similarly to me now, I truly avoid the conversation of my marriage, of my divorce, and instead, I just proceed like my life is the same as it has always been. In a way, a facade! I see my therapist every Thursday, and tonight she asked me... do I cry over my divorce? As if that is the benchmark of dealing with trauma and grief. She never likes my answer! My answer is NO, I am NOT a crier. It takes a lot to get me to let down my guard enough to feel anything, and I remind her..... I am a caregiver. I am responsible for two people, therefore, falling apart, crying, and having a pity party is just NOT possible. Sometimes some of her suggestions make me wonder..... really? 

She thinks I need to take an hour each day, to work through anger. She gave me examples of things I could do! Anyone reading this and who knows me well knows..... do not be prescriptive with me. Do not give me examples of what I should do, and MOST definitely do not tell me to feel a certain way at any point, much less one hour a day! This whole dialogue felt like I was back in grade school! 

I got back in my car from the session and felt nothing. Other than agitated. If I hear one more time that I am learning about how strong I am, I am going to blow. I do not need one more issue, tragedy, or crisis to prove my strength. In fact, I have been dealt with enough blows in life and at this point what I would love is stability, support, kindness, and respect from my spouse. All things that will never happen. 

Wednesday, November 6, 2024

Wednesday, November 6, 2024

Tonight's picture was taken in November of 2007. Mattie was five year's old. That weekend, we went to walk on Roosevelt Island in Washington, DC. A typical weekend activity. This place was like Mattie's playground, a place we traversed regardless of the season or weather. I will never forget these beautiful walks.... with Mattie, with Peter, and with Sunny. Now all three of them are gone from my life. You may notice I was carrying a big leaf! Which was a Mattie find! Mattie never left the Island empty handed. He loved collecting a piece of nature, almost like a memento of our journey together. 

Quote of the day: "You asked why I couldn't forgive you," Nick said, very quietly, and I jumped a little. "It was because you were the love of my life, Harper. And you didn't want to be. That's hard to let go." ~ Kristan Higgins

I woke up at 5:30am. By 7:45am, I hopped on the virtual conference call. This event was being held by one of Mattie Miracle's larger community sponsors. This credit union donates $10,000 to us each year. Their donations started in 2022. The credit union's board of directors wanted to donate to a cancer organization, but one that did something different from most! So Mattie Miracle was chosen! 

I served on a panel today with two other non-profit executive directors. Their non-profits are larger than Mattie Miracle, they have staff and a bigger operating budget. So that could have been daunting. I emphasize, could have! But what I quickly determined is Mattie Miracle has accomplished a ton in 15 years, whereas these organizations are over 60 years old. We have NO PAID staff either, unlike these other organizations. When I listened to what we do versus what they do, I couldn't help but feel proud. We offer all sorts of diverse services from our child life programs, our hospital snack & item carts, our Wishes, our therapy grants, and our innovative research grants. 

It was a two hour call and I would say I more than held my own. What I can easily say is that I am guided by Mattie, our life together, and his cancer experience. That will ALWAYS be my motivating force! After the call, one of the non-profit leaders wrote to the group and he said he was blown away by the passion for the causes on the call. Indeed. 

As easily as I can feel proud and on a high about the positive nature of the call, I can quickly snap and feel dejected, lost, and depressed. The vast swings in my life are very hard to manage. This was the first Mattie Miracle presentation I have done without Peter. Over the weekend, I moved Peter's computer camera and desk lamp down to my desk. Peter has much better equipment than me and I appreciate the better quality camera and crisper light, but I felt in a way that these items somehow were symbolic of Peter's representation on the call. I know.... it may sound crazy! The loss of Peter in my life has left an incredible hole in my heart, mind, and spirit. Though I am well aware that he is no longer the person I know, my mind is locked into the person I felt he was, the person I respected and who I thought valued, loved, and respected me. 

I feel like a broken record of feelings. Fortunately I have my friend Liz in England. We both play the same record daily, which helps to normalize a very unsettling and very upsetting existence. We share our journey, our thoughts, and feelings. I did not think it was possible to be close to someone across an ocean, but I am learning it is possible. We are bonded in trauma, abandonment, betrayal, and grief. 

Tuesday, November 5, 2024

Tuesday, November 5, 2024 -- Mattie died 787 weeks ago today.

Tonight's picture was taken in November of 2007. Mattie was five years old and in typical Mattie style was fully on! He grabbed his pretend microphone and was going back and forth between singing and making announcements. One thing was for sure with Mattie.... life with him was NEVER boring. 

Quote of the day: I'd marry again if I found a man who had $15 million and would sign over half of it to me before the marriage and guarantee he'd be dead in a year. ~ Bette Davis

Tonight I feel strung out. For a whole host of reasons. Trying to figure out my health insurance, trying to figure out how to title cars in my name, juggling my parents, and knowing that I have a two hour presentation tomorrow morning to one of our big sponsors and their members, is daunting.

I have rearranged my dad's schedule this week at his memory care center, because there is no way I can manage his shower and morning routine, and hop onto a virtual conference call at 8am. I have tried to prep my parents for tomorrow morning. Mainly because I don't want my dad up and out of bed until I am finished with my call. Which won't be a problem for him, as he would sleep the day away if I wasn't on his case. But my mom has no regard for my needs, and if left unchecked would turn on the TV, do her morning walk routine, right through my office, and the list goes on. I have repeatedly told her that my virtual conference will end at 10am. Most mornings, she isn't even downstairs before 10:30 or 11am. 

My point about this is I live under constant stress. Balancing everyone's needs and problems. Trying to appear together, professional, and intact tomorrow morning is a feat. I may not be doing justice to my level of angst, but it is palpable. 

Of course what isn't far from my mind is Peter. I will be doing a Mattie Miracle presentation tomorrow without my other half. For 15 years, we have navigated all these presentations together, and it pains me now that I carry on Mattie's memory alone. In addition, I am sharing the virtual stage with two other non-profits tomorrow. I am quite sure these other two leaders are not dealing with the drama, trauma, and chaos that I have been enduring for over a year. Yet I have to put that turmoil on a shelf and do my best job to introduce the audience to the great work and achievements of Mattie Miracle. 

All I can say is please think good thoughts for me on Wednesday from 8-10am. May I find my Mattie Miracle voice and channel my inner Mattie!  

Monday, November 4, 2024

Monday, November 4, 2024

Tonight's picture was taken in November of 2007. Mattie was five years old. That day, he and I walked to Peter's office. It wasn't far from our home. By that point in Peter's career, he earned his own office. So it was a big and exciting time for our family. Mattie was happy that Peter had a big white board in his office, and naturally this space inspired Mattie's creativity. A telltale Mattie drawing ALWAYS included a SUN. Therefore, it is no surprise that the sun became the symbol for Mattie Miracle. 

Quote of the day: There is no such thing as a ‘broken family.’ Family is family, and is not determined by marriage certificates, divorce papers, and adoption documents. Families are made in the heart. The only time family becomes null is when those ties in the heart are cut. If you cut those ties, those people are not your family. If you make those ties, those people are your family. And if you hate those ties, those people will still be your family because whatever you hate will always be with you. ~ C. Joybell 

You would think since I have been separated for a year now that I have gotten accustomed to being the only adult on duty in my household. But here is the funny thing about the brain.... it can play games on you. Because I am dealing with an ambiguous loss, there is a magical component to this situation! In that my mind may have acknowledged I was separated, but my heart wasn't there. In fact, even with a divorce my heart may never get there! Part of me lives within a Hallmark movie, in which I have this underlying notion that love always wins. That the bond between two people can overcome all sorts of adversity. After all, we survived Mattie's diagnosis and death. We faced the impossible together, built a Foundation, and live with this forever loss each day. 

I truly can't fathom how I have gone from Peter's everything to Peter's nothing. Today I got a correspondence in the mail letting me know I have been removed from Peter's 401K. Certainly from a logical standpoint, that was coming. But seeing this felt like I was mortally wounded. My well-being means nothing, my years and devotion, are meaningless, and what this all tells me in spades is I am viewed as a financial burden. All of this brings me down!!!

In addition to this, I am working on figuring out health insurance. When I read the Final Order of Divorce, it basically said I could stay on Peter's health insurance until our divorce. It never dawned on me that this would occur on October 31. So here I am scrambling to work out this detail, ALONE! Because LORD knows my days are so free, that I have years of experience balancing all of this, and that doing all of these tasks doesn't have an emotional toll! NOT!!!

Meanwhile, on Wednesday from 8-10am, I will be participating in a virtual conference with one of our major sponsors and their members. Three community non-profits have been asked to serve on a panel, and Mattie Miracle was selected.

I have to say, preparing for this has been bittersweet. Because Peter and I typically did these events together. As I told our marriage counselor (who we only lasted with for two sessions.... Peter's choice),..... 'we are better together.' This was how I actually felt. It is very hard for my brain to separate the person I thought Peter was and the man I have loved all these years, to the person he has now become. 

Any case, tonight I decided to place some visuals around my office for Wednesday's event. All of these visuals highlight so many of our amazing accomplishments. Do you know that on November 2, 2024, Mattie Miracle celebrated its 15th birthday? It hard to understand how Mattie's Foundation has been alive longer than Mattie, twice as long to be specific. 

Sunday, November 3, 2024

Sunday, November 3, 2024

Tonight's picture was taken in November of 2005. Mattie was three and half years old and that weekend we took him to the National Geographic Museum in Washington, DC. Outside of the Museum they had these wonderful sculptures of primates. Mattie posed with one! This has to be one of my favorite photos because it highlighted Mattie's beautiful smile and sheer joy for life. 

Quote of the day: Do not look for healing at the feet of those who broke you. ~ Rupi Kaur

My friends Ann and Tanja came over today. Ann loves to bake and one of the things she gave me were these cookies. I discovered I like cookies with M&Ms! 

I truthfully see and interact with very few people. My friends know this and Ann and Tanja were willing to just come in, give me a hug, and leave. But instead, when they came, we went outside and sat in the sun. I left my parents inside. That was actually a good idea, which was encouraged by my friends. Because if my mom is included, she will monopolize the conversation. 

For two hours, we sat and chatted. My friends are as devastated and confused as I am, because no one would ever have guessed that Peter wasn't happy and in love with me. The point is, it wasn't just me who is stunned by this revelation! 

I would say I am so traumatized that it is easier for me to shut out of the world. I do this for self protection because I can't see and absorb normal. To me everything else is normal in comparison to what I am dealing with. I know there are many other hurts in the world, I haven't lost touch with reality, but this is how I am feeling at the moment. I recognize this traumatic feeling all too well from when Mattie was diagnosed and then died. Being around people who lead active lives and aren't living with child loss, abandonment, and betrayal is difficult for me. Maybe because it reminds me how different I am and I see what I am missing in life. I can't handle that right now, as I am emotionally raw and fragile.  

That said, it was helpful to be outside, to be surrounded by greenery, and to have friends listen and care. I am so so busy caring for my parents, that I have conditioned myself to come last. Or not come at all! I also am aware of the fact that unless living my grief and abandonment, it is hard to hear over and over my story and my feelings. So that is another reason I shut people out. Yet it is the telling, retelling, and processing of this nightmare that is necessary in order for me to find some sort of stability. 

On top of all the emotions I am facing, I am also dealing with non-stop panic attacks. Another scary feeling, that seems to just overtake me. Yet I have to function and therefore I try to rationalize with myself that I am physically fine, and just as quickly at this anxiety comes on, it will dissipate. Overall, with grief, trauma, abandonment, betrayal, panic attacks, and caregiving, I feel wiped out on every level.