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.