Saturday, September 7, 2024

Saturday, September 7, 2024

Tonight's picture was taken on September 1, 2009. Seven days before Mattie died. By that point in time, Mattie felt absolutely miserable. He was dealing with extreme pain. That black machine sitting on the bed with Mattie was a pain pump. Mattie had that as well as pain patches. Mattie made the decision that he did not want to be at home, he wanted to return to the hospital. On some level he knew he was dying, he knew he needed a lot of support (which we couldn't provide him at home), and he wanted to be surrounded by his medical family. The hospital became like our second home that year. Before being admitted to the inpatient unit, Mattie spent some time in the outpatient clinic. Mattie's art therapists found all sorts of toys and things to keep Mattie busy. The remote control dino was a hit. But I will never forget this horrible moment in time..... the fear, the sadness, and the unknown of what was to come. 

Quote of the day: Ever has it been that love knows not its own depth until the hour of separation. ~ Kahlil Gibran

This group photo was taken on September 8, 2018. The 9th year anniversary of Mattie's death. Back in 2010, Mattie's school planted a memorial tree on the lower school campus. The school asked me what kind of tree we wanted and I immediately said... an oak! As Mattie loved collecting and gifting acorns! I will never forget that day in 2010, when the tree was dedicated in Mattie's memory. We were surrounded by a number of friends and school staff. It was a very meaningful and emotionally draining day. I remember when the event was over, everyone returned to their busy day, and yet our day was bleak. We did not have a child to go home to, normal activities to participate in, and it was a painful and striking reminder of our differences. 

However, within two years of the oak tree being planted, it died. So a second tree, a yellowwood tree was planted. That tree struggled and looked like it was going to die. So the school planted a third tree (another yellowwood) in a different location. Guess what? That tree was hit by lightning, and split the trunk. I was unhappy with that visual, so the school planted a fourth tree..... the tree you see in this group photo. In fact, the school's arborist, Tim, was kneeling in the front row of this photo with us. Tim said..... Mattie wanted an oak, so we better give him an oak. Tim felt that Mattie wasn't happy with the Yellowwood trees and was sending us a message. So Tim picked out this beautiful White Swamp Oak. The fourth tree is a charm!

Tim text messaged me on September 7, 2018, and suggested we have a tree planting party, to provide good vibes and energy to this fourth tree. Literally I contacted friends the day before the planting and look how many people showed up! All committed to Mattie and his memory. The day we planted the tree, Tim told us that as the tree was being transported to the school, he noticed that a bird's nest was in the tree. The nest remained intact, with birds in it. Tim said it is very unusual for such a nest to remain intact during transportation, and therefore he deemed that as a positive sign. 

Peter and me on September 8, 2018. You can see the tree was tiny, but over our head in height. 

This is the tree today! I went to visit it with my parents. It is hard to tell, but the tree has to be 20 feet or taller. It is thriving. Mattie got his oak! 

I took this photo, because I am trying to show you Mattie's grove. That is what I call his line up of trees... his current tree, tree #3, and tree #2. All three trees are now looking beautiful. So Mattie doesn't have only one memorial tree, he has three. 

There are all sorts of ornaments on the White Swamp Oak. 

But today, I placed 15 butterfly ornaments on the tree. One for each year Mattie has been gone from our lives. I also placed bows on each tree. 

A close up of some of the butterfly ornaments. 

Having to visit Mattie's memorial tree is heart breaking. It doesn't get easier with each year, but what made it particularly impossible was knowing that I not only lost my son, I have lost my husband too. Everything that matters to me is gone. Tomorrow will mark the first anniversary of Mattie's death that I face alone, without Peter. I know Mattie is watching over me and like me, he is perplexed with what has happened to our family. I wish Mattie was alive, as I know he would be an incredible support to me. He was taken too soon, and is missed and loved dearly. 

Friday, September 6, 2024

Friday, September 6, 2024

Tonight's picture was taken in September of 2008. Mattie was in his first month of treatment and our neighbor gifted Mattie, Dandy Dog. Dandy Dog was a hand designed bear, that my neighbor had made for Mattie. Mattie thought this was the neatest gift, because the bear was his size. Mattie was trying to show the camera what he looked like side by side to Dandy Dog. This weekend, I face the 15th anniversary of Mattie's death and it is hard to wrap my head around the fact that Mattie was been gone much longer than he was alive. Yet in his seven years on this earth, he taught me so much and his presence will never be forgotten. 

Quote of the day: A broken heart is just the growing pains necessary so that you can love more completely when the real thing comes along. ~ J.S.B. Morse

I saw tonight's quote and my immediate and sincere reaction is I DON'T agree at all! Our hearts can feel broken over many things. I know because my heart certainly has had lots of experience being hurt. However, the death of Mattie and the end of my marriage provide me with NO growing pains! Rather just devastation! These pains were NOT necessary in my life and I assure you, the real thing will never come along. Especially since I believed I had the REAL THING to begin with. I won't allow "the real thing" to occur in the future. I know my heart. I lost Mattie, and he wasn't replaceable. I feel the same way about my marriage. I may become divorced, but in my mind and heart the 36 years I had with my husband (the person I considered my other half) is a pain and loss that is so intense it's indescribable. It has left me with so many questions about trust, love, and commitment, that I will not subject myself to another long term relationship ever again. I do not know why trite statements and platitudes are dished out when someone is in pain. It certainly doesn't help the recipient, and I would say it actually compounds the pain. 

Given that Sunday marks the 15th anniversary of Mattie's death, I wanted to post another classic Mattie video. We took him to Butterfly World in Florida. Watch Mattie interacting with a bird and then how he reacts to a bird flying on top of his head. To me this is priceless! 

This will be the first anniversary of Mattie's death that I will be visiting his memorial tree without Peter. This used to be our tradition. It is hard to know how to cope with such a profoundly horrific anniversary, but Mattie's tree grounded us. The tree was something Peter and I shared and were passionate about together. 

This weekend, I will be putting ribbons on Mattie's three trees and placing 15 butterfly ornaments on his White Swamp Oak tree. 

Thursday, September 5, 2024

Thursday, September 5, 2024

Tonight's picture was taken in September of 2008. That day Mattie received this special gift from my former student and friend, Susan. The gift started as a lump of clay that had plastic dinosaur bones embedded in it. Once he dug through the clay and collected all the bones, he could fit them together to form a dino model! Mattie spent hours sitting onto of a sheet that lined the hospital floor, had goggles on and was picking at the clay to reveal all the bones. It was like a mini-excavation. It was the perfect activity for Mattie. After working on this big dig and assembly, Mattie paused and put his head down. This was when I snapped this photo. It wasn't posed, but rather the reflection of being tired and proud of his accomplishment.  

Quote of the day: When love is lost, do not bow your head in sadness; instead, keep your head up high and gaze into heaven, for that is where your broken heart has been sent to heal. ~ Anonymous

This morning, I swear I heard a sound in my ear while I was sleeping. It sounded like a fly buzzing about. When I looked around I saw nothing. So I went back to sleep. But about thirty minutes later it happened again, just when my alarm was set to go off. Either I was imagining there was a fly in my room, or there really was a fly! Nonetheless the sound was very real. When I woke up annoyed, I looked at my phone and received many alerts regarding my dad's accounts. Truly my life is one fire drill after the other. In the past, if I received such alerts, I would have immediately asked Peter for help. Peter was not just my best friend and husband, but he was my go to person. My tech support, my gadget guy, the person who could fix anything, solve all sorts of problems, and overall be there to emotionally support me through the little things and life's crises. It is a huge loss to my life, as if a piece of me has been surgically removed. 

After feeding Indie, I literally ran to the computer to see what was recommended to fix this problem. If you haven't heard about this big data breach, here is an article about it. Given the monitoring companies we use, they can tell you where the possible breach is coming from and how to resolve it. Literally at 6:30am, I was learning about freezing credit and so forth. In other words another fire to put out! Once that was addressed, it wasn't like I could take a deep breath and relax. NOT possible in my house, because I had to get it together, so that I accomplish my morning routine and get my dad to his podiatry appointment by 11am. Sounded like this meant I had a lot of time, but it really isn't. I map out my morning to the minute. Having this scare and derailment this morning sent me scrambling. 

It was a day of one chore, one bill, one issue after the other. It is 7pm, and I feel like I have gone five rounds. But at the end of the day, I would manage, handle, and cope with just about anything, if I understood what on earth happened to my marriage and the person I have held dear for 36 years. I get very connected to the people I care about and there are moments in my day when I evaluate my life, and truly say, what's the point?! Everything that I believed, valued, and held to be true is no longer my reality and this has left me disillusioned and forever changed.

Wednesday, September 4, 2024

Wednesday, September 4, 2024

Tonight's picture was taken in September of 2008. Mattie was home between treatments. That day his "girlfriend," Charlotte came to visit. Mattie met Charlotte in kindergarten, the year before this photo was taken. They were inseparable. Charlotte's joke was that she, Mattie, and their friend Campbell were all going to go to college together and be roommates. Just adorable. Charlotte visited Mattie often, both at home and in the hospital. As an adult, it is hard to visit a child in the hospital. But as a child, it is even harder. Yet Charlotte was there with us throughout the 14 month journey. I learned so much from Mattie and his friends, and even at their tender age of 6, they already knew what was important in life.... love, support, and friendship. 

Quote of the day: She took a step and didn't want to take any more, but she did. ~ Markus Zusak

This morning I received this poem from my friend in England. She wanted to let me know she is thinking of me and that like a tree blown in the wind, I get stronger as I learn to navigate and survive each blow. As I told her this morning.... may God watch over both of us.

It was a busy day. While getting my dad up, showered, and dressed, the car dealership came to pick up my car for servicing. I am convinced something is wrong with my car, so we shall see, but I am afraid to drive it. My service rep called me today to check on me and to let me know that they will be doing a once over of this car to get down to the bottom of the problem. 

Meanwhile, when I got up super early this morning, I noticed that several of the outdoor lights that I fixed are once again NOT working. This would normally be something I would turn to Peter for, as he has many carpentry, plumbing, and electrical skills. In fact, he installed most of our outdoor lighting. In any case, I have no intention of playing with wires, so this morning, I text messaged our electrician. Bob is someone that worked in our house for MONTHS, after we bought it. The house literally needed to be completely rewired because it wasn't to code! So yes, I have the cell phone numbers for both my plumber and electrician, even though they work for a big company. In any case, Bob is coming next week, and we will get down to the bottom of this wiring issue! 

After dropping my dad off at his memory care session, I came back home, and met my mom's physical therapist. She had a session, and then I got her in the car, and took her to the Foundation's mailbox, and then onto the hospital for her mammogram. My mom was very nervous about the mammogram, mainly because her neck has lost its flexibility, making it hard to position her on the machine. But she had a great tech and therefore had a positive experience. 

For the next several weeks I am balancing doctor appointments for both of my parents and for myself. The ironic and funny thing is I finally paid the Prolia bill from March, and don't you know it..... next week is my next shot! Six months flew by while fighting to get access to my co-pay! 

Tuesday, September 3, 2024

Tuesday, September 3, 2024 -- Mattie died 778 weeks ago today.

Tonight's picture was taken in September of 2008. This was Mattie's second month into treatment. By that time all of his hair on his head fell out. For the most part, this did not seem to bother Mattie. Or it didn't while he was in the hospital. When he was out in public, what he did not like was people staring at his bald head. He could feel people's reactions and this evoked various feelings for Mattie. I think the hospital truly became a safe space for Mattie, because he was surrounded by an incredible care team of nurses, art therapists, physical therapist, and child life specialist. All of these women made the impossible much more bearable! As you can see, Mattie was a busy fellow even on chemo, and I am thankful for his love of creativity, because it helped to navigate many rough moments. 

Quote of the day: Happiness is the china shop; love is the bull. ~ H. L. Mencken

I can't understand what happened to the summer. One minute it was the beginning of May, and the next minute it is September. I have never liked changing over from summer to fall. I did not like it as a kid, most likely because it meant that school was starting, and I definitely do not like it as an adult. Summer signifies more freedom to me. Freedom to be outside, freedom to see nature and greenery, and freedom from being inside of my house. 

When Mattie died, the whole notion of Fall changed for me. I went from a mom, who was tied to Mattie's school community, to just a woman, who was a bereaved mom and no longer part of the school community. There weren't fall events, no playdates, and therefore September not only signifies the month Mattie died, but also the month that I stopped actively being a mom. I am reminded of this heartbreaking change every September. As I am surrounded by people who are parents, who are getting their children to school in the mornings, and talking about school milestones......... I will never personally experience any of this.

Childhood cancer changes the lives of families permanently. I have seen it within myself, my marriage, and my future. I do think because I have personally experienced cancer and the death of my son, people feel very comfortable talking with me about their own diagnosis. Case in point, my car needs to go back in for service because I am uncomfortable driving it. To me it is still feels wobbly and though brake weights were put on the tires, I did not feel it made a difference. In fact, I feel the issue has gotten worse. My service provider called me today to arrange for my car to be picked up on Thursday. She and I got to talking and I learned that she has brain cancer. I knew she was going on leave until the beginning of the year, but today, I found out the reason why. She isn't telling all her customers, but she and I have a special connection. 

I am devastated for her, especially since she has had a tough life up until this point. Ironically when talking to her, I pictured someone who is young and in her thirties. Turns out she is my age, which further connects us together. I told her I plan on calling the dealership periodically to check in for updates on her progress. She was telling me how she chose her oncologist, and talked about the importance of a rapport and connection. This is 100% correct! There are many oncologists out there, many are competent, but a cancer diagnosis leaves you vulnerable and therefore the right personality fit must be present for the team work to be effective. So I shared my perspective and insights and again this reminded me..... Mattie was indeed my life's greatest teacher. I use the lessons I learned from Mattie everyday to relate, connect, and support others. 

Monday, September 2, 2024

Monday, September 2, 2024

Tonight's picture was taken in August of 2008. Mattie was in his first month of treatment and his art therapists and child life specialist were on the case and working hard at figuring out Mattie's personality, his likes and dislikes, and providing activities to keep him engaged, active, and with the necessary diversions to cope with living 24/7 in a hospital. Thankfully Mattie loved working with his hands, because during his 14 month hospitalization, Mattie painted, built with cardboard boxes, did hundreds of Lego kits, and worked with clay. Mattie was very prolific and I am thankful for all of the items he created, as they serve as important parts of his legacy. 

Quote of the day: Stab the body and it heals, but injure the heart and the wound lasts a lifetime. ~ Mineko Iwasaki

As today was a holiday, I had my dad home from his memory care center. His physical therapist came to work with him at 1pm. Any activity for my dad is a GOOD activity, as I am desperate to keep him moving and as strong as possible. Because I had a good chunk of the morning at home, I was able to work on Foundation items that I had been trying to get to for some time now. During the week, when my dad is at his memory care center, I do NOT get a break, because by a certain hour my mom wants to go out. Which makes it close to impossible for me to be able to work, focus, and concentrate during the day light hours. Which is why if I have serious work to do, I have to wait until after 10pm, when my parents are in bed, to have undivided time to myself. 

My friend in England, who I met in an on-line support group in the fall, communicates with me daily. She gave me this passage today, because she felt it would inspire me, and remind me that the work that I do each day, is not for naught. That the work it done so that I can whether the storm. It is a poignant story, because I do feel like I am constantly struggling to stay afloat, and to manage the various crises I am hit with each week. My joke, after reading this passage was..... I need a "labourer." Or maybe a few!

If you can't read the passage in the photo, here is what it says:

Before hiring a new worker, the farmer asked what he could do. "I can sleep through a storm," the laborer said. It didn't make any sense to the farmer but he needed a worker and, for the next few months, the man was perfectly capable. Then a storm struck in the middle of the night. The farmer jumped out of bed and ran into the rain. He banged on the door of the laborer's cottage but got no answer, so he ran off to try to minimize the damage the storm would cause. But he found the animals were in the barn, the machinery and tools were stowed away, all the doors were locked, and the thatched roof the laborer had repaired was riding out the storm nicely. Then he understood. The laborer could sleep through a storm, whenever it arrived, because he knew he had done his work properly. Storms come in all walks of life. Do your best during the day and you will always sleep well at night. 

Sunday, September 1, 2024

Sunday, September 1, 2024

Tonight's picture was taken in August of 2008. It was Mattie's first month in treatment. It did not take Mattie's art therapists long to understand that Mattie LOVED to create. They also knew he loved Scooby Doo. So they designed a stenciled scene of all the Scooby Doo characters on a ceiling tile. Mattie and I worked on painting in this ceiling tile for weeks. When we finally finished it went up on the clinic's ceiling. Mattie designed many ceiling tiles while in treatment, and each time we entered the clinic, Mattie was proud to see his work on display. 

Quote of the day: Stop calling your heart broken; your heart works just fine. If you are feeling love, anger, gratitude, or grief, it is because your heart is doing its work. Let it. ~ Maggie Smith

This afternoon, I took my parents out to Sunday brunch. This is a tradition we started when they moved in with us in 2021. Each Sunday, we go to the same restaurant and therefore we have gotten to know our server very well. Today, Cheryl was sick, so we worked with someone else. 

I ordered a drink today called, a Blind Date. It is my one drink a week, and I happen to like this one because it is made with fresh grapefruit juice. In any case, when I ordered it, the server said to me.... who is the lucky guy? You know because I ordered a drink called a Blind Date. I literally heard him, but did not merit the comment with a response. First of all, he was a lot younger than me and second, I am in no mood for cutesy or come ons! I have enough on my plate, and seeking any sort of relationship now or into the future with a man is NOT going to happen. 

As our meal continued, I analyzed this server and realized he needs the come on lines, because his ability to do his job is lacking. While in the restaurant, I text messaged Cheryl and told her that I disliked this server for his laziness and lack of attention to detail. Mind you when I entered the restaurant, I told the manager and the hostesses that I need a server who is attentive and can manage our multiple requests (they know us well, so when I say this, they know exactly what I mean). How they matched us up with this fellow is beyond me. 

Any case, Cheryl confirmed my experiences with this man. We managed through the meal, but that was only because of my assertiveness and addressing all of my parents needs myself. Truly if you tick me off enough at a restaurant, I literally will get up and help myself to things and clear the table.  

Dining with my dad is getting very challenging as he eats so fast, or doesn't eat at all and then lands up staring at us, waiting for us to finish. My dad is stuck inside his own head. He can't hold a conversation, has no desire to, hardly listens to us when we are talking and has no short term memory. I mean NONE! Of course no meal would be complete without trips to the bathroom, and today involved a complete changing. 

I balance a great deal on any given day. I have given up aspects of my own life to either be a full time mom, to run the Foundation full time, to be a caregiver to my parents and the list goes on. I say this because when I am in a relationship, the needs of the other person are always extremely important to me. In some cases you could say others' needs override mine. For the most part these are my choices, but given all I have emotionally sacrificed in my life, I never thought I would be facing a divorce and life without my husband.