Saturday, November 23, 2024

Saturday, November 23, 2024

Tonight's picture was taken in November of 2002. Mattie was five months old. By this point in his development, he was used to water and the bathtub. Mattie did not naturally gravitate to water. But when he got acclimated over time, he came to LOVE bath time! He had some elaborate play schemes in this tub! But look at that cute face, looking up at me. He was priceless. 

Quote of the day: We are aware that blaming and arguing can never help us and only create a wider gap between us; that only understanding, trust, and love can help us change and grow. ~ Thich Nhat Hanh

Tonight's quote is interesting. In the 35 years I have known Peter, I can count on one hand our arguments. For the most part we did not argue. We did not always agree with each other, but we always respected the other and found a way forward. Which is why Peter walking out on me in September of 2023, is so shocking. Many times couples headed for divorce SAW it coming. There were tell tale signs, problems, and unhappiness. If Peter felt any of these things, he kept them to himself. Asking for a divorce after all we have been through is shocking enough, but the circumstances behind this plays out like a bad TV movie. There are many things I have not revealed on this blog, because it was my hope that Peter would realize what he was walking away from, but I will say that he did not just walk away, but he walked right into another relationship. A relationship that has caused havoc, devastation, and extreme despair in my household. I have been betrayed in the worst possible way and I don't see a way forward. While Peter is off living his "new" life, he has completely forgotten his life with me, our families, and forget Mattie. None of us matter. 

Peter has left me traumatized, decimated on every level, and it is hard to function in the world. If my parents weren't around, I would be floundering even more than I currently am. If my husband of decades can lie, betray, abandon, and be so cruel, then in my opinion, so can the rest of the world. So why bother?

While my dad had his physical therapy appointment this morning, a neighbor came over to visit. All my neighbors have known what is going on with me and they have had their own observations of my nightmare over this past year. In fact it was my neighbors who told me that I did nothing wrong, therefore I have nothing to be ashamed of! Because for months after Peter left, I pretended that he was around but on travel! So we chatted with my neighbor for an hour this morning. 

After my neighbor left, I completed the Foundation's November newsletter and then finished my continuing education for my licensure renewal. I went on line this evening and inputted all the data and I can check off this big hurdle from my to-do list! I frankly do not know how I was able to do anything this week given how my life has been torn to shreds. 

Friday, November 22, 2024

Friday, November 22, 2024

Tonight's picture was taken in November of 2002. Mattie was 7 months old and Peter just got home from work. To me this photo is charming. All three of them in the photo have their own narrative going on. Patches, our calico cat, was assessing both Mattie and Peter, Mattie was clued to Patches, and Peter was smiling over the encounter. Patches was the best cat. From the moment we brought Mattie home from the hospital she understood he was a precious member of the family. 

Quote of the day: Yes. THANK YOU. And say hello to Judas Iscariot. ~  Suzanne Finnamore

Mattie Miracle operates five Snack and Item Carts! We rely on our supporters to help us keep these Carts stocked. Though the energy of our drives is different Post-COVID, we still have many people committed to our virtual drives. THANKFULLY! Thousands of dollars of items were donated to three hospitals this week!!! Frankly given my existence right now, it is thoroughly remarkable that I am caregiving, running the Foundation, and keeping the house afloat. 

Deliveries of Mattie Miracle items have been officially completed today. My friend Carolyn drove a big supply of candy and snacks to Children's Hospital at Sinai in Baltimore, Maryland. Pictured here is Emily, she is Mattie Miracle's child life specialist! Driving to Baltimore would not be easy for me right now, so I am very grateful that Carolyn has taken on this role. 

I drove to Bethesda, MD today, to do a big drop off of items at the National Institutes of Health. Getting onto that campus is no easy feat as it involves going through a metal detector, screenings, and the whole car gets searched! Nonetheless, traffic was fortunately light and the process went off without a hitch. 

My friend Ann, did a drop off at MedStar Georgetown Hospital in Washington, DC. This was the hospital Mattie was treated at and we launched our first Snack and Item Cart there in 2015. It is hard to believe that the Cart will be ten years old next year!

I am not sure whether I will ever feel stable again! I am facing one panic attack after the other for the past two weeks. I am not a stranger to panic attacks. My first round of them occurred after Mattie died. They lasted for months and the only way I managed them was that I would walk ten miles a day! My next bout of panic attacks resumed when Peter left me in 2023, then I got them again when my divorce was finalized (October 2024), and now I have them in full force. DAILY, and multiple times a day. Fortunately I know the signs and symptoms, because otherwise, I would think I was gravely ill.  

This afternoon, I took my mom out for tea. I know everyone who works at our local Starbuck's and I even know many of the loyal customers. Any case, today while ordering tea, I started talking to one of my favorite people behind the counter. Next thing I knew, he gave me a free tasting of a gingerbread latte. That kind gesture was so thoughtful and little does he know what a difference it made to my very miserable day. 

Thursday, November 21, 2024

Thursday, November 21, 2024

Tonight's picture was taken in November of 2002. Mattie was 7 months old. Peter took this photo of us in front of our favorite tree.... a big oak! Ironically this tree became a big part of our existence, as Mattie collected its acorns in the Fall and in the spring, we used its leaves to feed Mattie's tent moth caterpillars. Before we moved to Virginia, we took a few of its acorns and planted them in pots in our backyard. So we have two mini Mattie oaks with us always!

Quote of the day: Daily I walk around my small, picturesque town with a thought bubble over my head: Person Going Through A Divorce. When I look at other people, I automatically form thought bubbles over their heads. Happy Couple With Stroller. Innocent Teenage Girl With Her Whole Life Ahead Of Her. Content Grandmother And Grandfather Visiting Town Where Their Grandchildren Live With Intact Parents. Secure Housewife With Big Diamond. Undamaged Group Of Young Men On Skateboards. Good Man With Baby In BabyBjörn Who Loves His Wife. Dogs Who Never Have To Worry. Young Kids Kissing Publicly. Then every so often I see one like me, one of the shambling gaunt women without makeup, looking older than she is: Divorcing Woman Wondering How The F*** This Happened. ~ Suzanne Finnamore

After I dropped my dad off at his memory care center this morning, I headed to the Department of Motor Vehicles (DMV). Fortunately I made an appointment because the place was hopping with people. I am very impressed with the Chantilly DMV. It is well run and efficient. With an appointment, I literally was helped within minutes. Before my appointment, I spoke to the DMV by phone because I had no idea how to transfer our car titles to my name. Remember, all my married life, I didn't manage our finances, car or home maintenance. I have had a HUGE learning curve and some days I feel very overwhelmed or in crisis. 

Any case, from my phone call, I learned all the documents and paperwork I needed to bring with me today. When I presented these documents today, the representative told me she couldn't help me without Peter present. I was just about to lose it, but then remembered what the person on the phone told me. She presented me two ways to transfer a car title.... one was to bring in the original divorce paperwork and car titles, or two have Peter sign over the cars to me on the title. The notion of leaving the DMV without accomplishing what I set out to do, wasn't going to happen. So I demanded to see this representative's supervisor. The supervisor came out and I asked him what good is a court document if it isn't going to be read and followed? He understood immediately, looked at my original documents and then the transfer process began. 

I am quite certain if I wasn't assertive and advocated for myself today, I would have been sent home without transferring the titles. So needless to say that hurdle has been jumped successfully. When I got home, I had some computer work to do for the Foundation. As I sat down to work, I couldn't get connected to the internet. I literally was about to jump out of the window! I am so tired of putting out figurative fires in my house. I tried rebooting the computer multiple times. That did nothing. I rebooted the modem and router, that also accomplished nothing. I kept getting the alert that something was wrong with my ethernet connection. Finally I was desperate. I crawled under my desk and unplugged everything from the electrical socket. I waited a few minutes and then replugged things! Sure enough, within minutes I was connected again. When I tell you sheer panic took over, I am not kidding, as I can't do Foundation work and complete my licensure continuing education credits without connectivity! 

This evening, I loaded the car to the gills! All of these items are going to the National Institutes of Health tomorrow. Thanks to the help of my friends, Ann and Carolyn, all of our items will be delivered by tomorrow. 

For weeks now, one of the room's in my house has looked like a warehouse! So thrilled that the Item Drive was successful and that we can provide these generously donated items to stock our hospital carts! 

Wednesday, November 20, 2024

Wednesday, November 20, 2024

Tonight's picture was taken in November of 2002. Mattie was 7 months old and I had him on the floor, propped up with pillows all around him. I did this because he was learning to sit up independently, and I did not want him flipping over. Can you guess who he was staring at in this photo? YES it was me. Mattie had a way of always tracking me wherever I went! 

Quote of the day: When love dies and marriage lies in ruins, the first casualty is honest memory, decent, impartial recall of the past. Too inconvenient, too damning of the present. It's the spectre of old happiness at the feast of failure and desolation. So, against that headwind of forgetfulness I want to place my little candle of truth and see how far it throws its light. ~  Ian McEwan

Given my parent's reaction to the RSV injection yesterday, I cancelled my mom's physical therapy session this morning. She was exhausted still! I did take my dad to his memory care program and then went grocery shopping. When I came home I was determined to find this tree. This cute faux Christmas tree came from Los Angeles. I remember buying it with my mom YEARS AGO! 

Coldwater Creek, was a women's clothing store. It was going out of business and they were selling everything in the store. My mom bought this tree which was on display. It turns out to be a cutie! I decorated it for my parents each Christmas, while they lived in California. 

There is no way I am getting a Christmas tree (real of faux). For many reasons, but foremost because holidays mean nothing to me anymore. The death of Mattie impacted me for sure, and now my divorce has put the nail in the coffin. I am simply going through the motions for my parents. 

In 2023, my first Christmas without Peter, I never put up a tree. I was looking for this one, but couldn't find it anywhere. When I asked Peter where it was last year, he said most likely in the crawl space above the garage. Frankly I have never gone into that crawl space, much less know how to access it. But today, I put on my big girl pants, maneuvered the beige ladder that Peter had in the corner of the garage and I climbed up to that trap door in the ceiling. 

Sure enough, Peter had a ton of Christmas things stored up there in a very organized fashion. Peter used to put reindeer and other decorations out in our front yard. I don't have the courage or strength to bring these decorations down the ladder. So they remain in the garage crawl space. Everything except for this little tree.  

I have now brought all our Foundation item drive materials to the garage. My friend Carolyn came to pick up this pile tonight and will be driving it to Baltimore, MD on Friday! 

This pile is going to the NIH! I will load my car Thursday night and drive it to Bethesda on Friday! All of these items keep our Snack and Item Carts fully stocked, as families caring for children with cancer really rely on this support!

Christmas came early for me. I received this lovely milk frother today from my cousin Cheryl. I have to say that tea lattes are one of my favorite drinks, so now I have an easy way to froth milk. Though Cheryl and I have never met, I feel like we know one another very well. She has been an absolute God sent to me since Peter left. 

Carolyn surprised me with these wonderful goodies! Can you see the sunflower in the floral arrangement? A tell tale Team Mattie symbol! Two out of the four pastries have already been consumed and they perked up our evening. 

Tuesday, November 19, 2024

Tuesday, November 19, 2024 -- Mattie died 789 weeks ago today.

Tonight's picture was taken in November of 2002. Mattie was seven months old. That day, we received this hooded sweatshirt in the mail. It was a gift from my mentor at Union College (where I received my bachelor's degree). Prof Styles wanted to congratulate me on the birth of Mattie and to welcome Mattie into our college family. After all, Peter and I met at Union College, and naturally the hope was that Mattie would also be interested in visiting or even going there one day! In any case, we snapped this photo of Mattie to share with Prof. Styles. Our life and future looked so differently back then. 

Quote of the day: Everything can change in a heartbeat; it can slip away in an instant. Everything you trust, and treasure, whatever brings you comfort, comes at a terrible cost. Health is temporary; money disappears. Safety is nothing but an illusion. So when the moment comes, and everything you depend upon changes, or perhaps someone you love disappears, or no longer loves you, must disaster follow? Or will you-somehow-adapt? ~ Margaret Overton

Excellent quote, excellent question! Will disaster follow or will I somehow adapt to being divorced? The answer is I truly don't know. I received a message from a friend today who knows me and witnessed countless times the incredible bond and connection I had with Peter. In fact, most people who knew us are as perplexed as I am about the dissolution of my marriage. But what my friend today reminded me of is that I have to take things at my own time and my own pace.

That is very insightful because I find when the therapist, lawyer, or others want me to close this chapter of my life, in order to have a new beginning, I find this very upsetting. It completely negates my feelings, how I operate in the world, and most definitely doesn't account for the fact that I spent more of my life with Peter, than without him. It isn't a good feeling to be the one left behind, to know that I am no longer loved by the person I entrusted my life to, and then to also understand that he has moved on, and has a brand new life.  

My friend Ann came over today to help me with the Foundation's annual drive items. This week, I want as many of these donations delivered to hospitals as possible. We loaded her car up and then she helped me carry my big Friday delivery to the garage, so that I can more easily load the car on Thursday night. I assure you candy and snacks can be very heavy to lift, and it saddens me that I now do these item drives without Peter. We used to be quite a team, or so I thought. 

This afternoon, I took my parents for their RSV (Respiratory syncytial virus) vaccine. My mom's pulmonologist has been insisting she take this vaccine, given that she has several lung conditions. He wanted her to take it last year, but since it was a new vaccine, I wasn't comfortable letting her receive it. But this year, the doctor got to me, because he explained that with my mom, she most likely would be hospitalized if she contracted this virus. Any case, I sat with each of my parents as they got their injection. In both cases, they immediately screamed in pain. My dad practically jumped out of his chair, that is how bad it was. Both of them complained of stinging and burning for about an hour after the shot was administered. In addition, both of my parents became extremely exhausted from the shot. So we shall see what tomorrow holds. 

Meanwhile, on Thursday, I am going to the DMV, to change the title of our cars. I HATE with every FIBER OF MY BEING, having to negotiate all this paperwork! Having to figure out everything for myself, on my own! If the therapist tells me one more time about my strength, I literally may bop her on the head! I have gone from a person who didn't pay bills, manage finances, taxes, handle house repairs, and the list goes on! 

Keep it in mind that I am doing all of this with a cluster headache! I stayed up late last night working on the DMV documentation and I am hoping that I have completed the right things. I am bringing many documents in tow with me on Thursday because I am not sure exactly what I need (despite talking to a representative on the phone). I have to get this right, because running back and forth is not easy for me with my caregiving schedule. 

Monday, November 18, 2024

Monday, November 18, 2024

Tonight's picture was taken in November of 2003. Mattie was a year and a half old! He naturally gravitated to puzzles. I can't tell you how many times we did this one together. When Mattie was in the hospital, he was 6 years old. It wasn't unusual for us to tackle a 500 piece puzzle in his room. This size puzzle can be a challenging for adults, but Mattie enjoyed sorting and finding pieces that went together. I am very grateful Mattie loved these kinds of fine motor activities, because they kept us engaged and busy throughout Mattie's cancer journey.  

Quote of the day: Divorce shreds the muscles of our hearts so that they will hardly beat without a struggle. ~ E. Lockhart

I did not sleep well last night. Between my cluster headache and non stop panic attacks, I think I finally fell asleep at 3am, just to get up at 6:30am. This of course doesn't help how I feel. I can't imagine a day where someone would care about my needs, a day where someone wants to support me, and a day when I am not in a panic about finances, bills, and my future. Each day I wake up saying to myself.... what shoe will drop today!? What unexpected bill will be in my mailbox, what unexpected house repair will I have to contend with, or what health crisis will present itself?! I have to say that I really do not see a future for myself, in fact, there are days where I do not even know my own identity. I lost the role of mom and now wife. 

I took my mom to Washington, DC today for her hair and nail appointment. My headache was bearable this morning but by noon, the stabbing pain within my eye and head were extreme. Yet who cares? I have to suck it up and continue forward because this is the life Peter has left me. My life has been decimated in the most cruel manner and when I had a meltdown on Sunday, my rant entailed the mistake I made in life which was putting everyone else's needs ahead of my own. Raising Mattie, being present to serve as a manager of our household, running Mattie Miracle full time without taking a salary, and now being my parents' caregiver. I did these things because I thought Peter supported these decisions and that we were a team. But now at the end of the day, I am left with nothing, and I don't get it! I doubt I will ever get it. 

Sunday, November 17, 2024

Sunday, November 17, 2024

Tonight's picture was taken in November of 2002. Mattie was 7 months old. As you can see, he was zooming around our first floor in his "tot wheels." That gizmo was a total lifesaver, as it gave Mattie the mobile independence he craved. He followed me around everywhere, an no corner or space was too difficult for him to maneuver himself into!

Quote of the day: Any way I slice reality it comes out poorly, and I feel an urge to not exist, something I have never felt before; and now here it comes with conviction, almost panic. I mentally bless and exonerate anyone who has kicked a chair out from beneath her or swallowed opium in large chunks. My mind has met their environment, here in the void. I understand perfectly. ~ Suzanne Finnamore

My head feels like it could explode and as if a sharp knife is going through my eye! This is not a migraine, but a cluster headache. Another nightmare that I get from time to time. They aren't as frequent thankfully, because these headaches are nick named, the suicide headache. That should give you some idea of the intensity of the pain. Cluster headaches can last weeks to months. I am truly hoping that it isn't months, because I assure you I am living with enough pain emotionally right now. What would help is less stress, a normal life, and more sleep, support, and kindness. 

After getting my dad settled today, I had some Foundation work to do. I reviewed the Foundation's therapy grant program which started in 2022. Since its inception, we have awarded 7 grants to children, so they can seek therapeutic support within their community. To date we have awarded over $10,000 of grants! 

After that work, I then started compiling the Item Drive goodies that our community generously donated to Mattie Miracle. This is only some of the items. Since it is only me carrying things now, I gave up after transferring these items from one room to the hallway in front of Mattie's Mr. Sun painting.

Starting this week and next, these items will be donated to Children's Hospital at Sinai (Baltimore, MD), MedStar Georgetown Hospital (Washington, DC), and NIH's Clinical Center (Bethesda, MD). All three hospitals house our Mattie Miracle Snack & Item Carts. 

A BIG THANK YOU to all our supporters who made these Mattie Miracles possible!