Saturday, October 7, 2023

Saturday, October 7, 2023

Tonight's picture was taken in October of 2004. Mattie was two years old. I will never forget this moment in time. That day his Montessori preschool went on a field trip to Butler's Orchard in Maryland. This is how I learned about this great farm! In any case, because Mattie was having difficulties with the director of this preschool and his classmates, I found my way to volunteer and serve as a class chaperone that day. Thankfully I did, because I would never have captured this adorable photo otherwise. The kids took a hayride out to the pumpkin patch, and Mattie picked this orange cutie to take home. I absolutely love the composition in this photo, with color, context, and Mattie's gaze into the camera.

Quote of the day: Words have the power to both destroy and heal. When words are both true and kind, they can change our world. ~ Buddhist quote

There are times within any given day where I say to myself...... can I really do this? Can I make it through another day living with such stress, chaos, and uncertainty? Of course what I am reminded of is the simple fact that I survived the worst stress possible in 2008 when Mattie was diagnosed with cancer. Though I did not undergo cancer treatment myself, I endured endless stress, anxiety, lack of sleep, and the chaos of living within a pediatric intensive care unit for 14 months. Now it is 14 years later, but the stress remains within me. Therefore, whenever I am faced with subsequent intense stress, I may not react like a "normal" person. Instead, I react in a very hyper-alert manor and in this mode, I truly can work non-stop, almost robotic like. Which means avoiding and absorbing true feelings, because there is no time to process them. Or if there where time and I did sit with these feelings, I wouldn't be able to function in my caregiving role. It is kind of a double edged sword. But a sword that is unfortunately very familiar to me. 

I took my parents out to lunch today and my mom and I realize we can not talk about emotions or anything serious in front of my dad. It exacerbates his irritable bowel syndrome. So trying to keep things light and entertaining, is exhausting. On my drive home, which was about 40 minutes, I turned the radio on. The host was talking about dogs in the first hour and to make a long story short, we all were engaged listening to this show. It took our minds off our troubles and made a 40 minute ride, seem like 15 minutes.  

I am happy to say that we finally finished the 1,000 piece puzzle of California. It took us WEEKS! But we did not give up. Initially I bought puzzles for my dad, but he has no interest in them and the activity only produced frustration. So instead, my mom and I are enjoying the activity and we work independently on it in whatever free moments we have in any given day. Tomorrow we start a puzzle of the world!

Friday, October 6, 2023

Friday, October 6, 2023

Tonight's picture was taken in October of 2004. Mattie was two years old. Each October weekend, we would take Mattie to a different fall festival. This particular one had a petting zoo for the children. Mattie was getting a close encounter with a sheep, and his open hand and the fingers moving, was my tell tale sign that Mattie was fascinated and taking it all in.  

Quote of the day: Our grief is as individual as our lives. ~ Dr. Elisabeth Kubler-Ross

It was another difficult day. This afternoon, I picked up my dad from his memory care center, and then we all went out to lunch. While driving, my mom started in on me. I hear commentary day in and day out, and negative feedback constantly. Truly, I can take just so much. I tried to redirect my mom and also asked her to stop her lament directed at me. She wouldn't stop. So literally while driving, I was screaming at the top of my lungs. I explained to her that all this tension and stress is going to make me physically ill. If I become ill, the whole house of cards comes crumbling down. 

Honestly there are times all this stress gets to me and I just don't know how I will take it one more day, much less one more minute. After we got back from lunch, it was literally evening. Dining with my parents is close to a four hour experience. In any case, I got my dad settled, my mom went upstairs to change, and Sunny and I went for a walk. Sunny can't walk more than a few blocks now because of his cancer, but nonetheless, I know I need to get out of the house, get fresh air, and see greenery. This is my form of therapy, which helps me manage stress. 

Thursday, October 5, 2023

Thursday, October 5, 2023

Tonight's picture was taken in October of 2006. Mattie was four years old and that day we took him to Butler's Orchard in Maryland. They had a wonderful Fall pumpkin festival. We visited this farm practically every fall and spring. Mattie absolutely loved taking a hay ride out to the pumpkin patch to pick his own pumpkins. His love for all things ORANGE happened early in life, and we loved our fall festival adventures with Mattie. Prior to having Mattie, I literally never went to a fall festival before, so with Mattie there were many firsts. 

Quote of the day: Life is not the way it is supposed to be. It is the way it is. The way you cope with it is what makes the difference. ~ Virginia Satir

This morning, after getting my parents settled, I went to meet my friend, Denise for tea/coffee. We have been friends a very long time and we met each other in graduate school. Denise has been part of Mattie's cancer journey and during that time, I met her daughter, Marisa. Marisa was in high school at the time, but she volunteered to visit Mattie when he was home between treatment from the hospital. Marisa engaged and played with Mattie, so that Peter and I could get out of our home and regroup. This was a challenging task for an adult, much less for a teenager. But Marisa rose to the occasion each time. Once Mattie died, it was Marisa's idea to create a bake sale at our annual Walks. Marisa ran our bake sale for ten years, until our Walk turned virtual because of COVID.

Denise and her husband, Dave, attended our psychosocial think tanks at national conferences in 2012 and 2013 and Dave helped us manage our exhibit booths. I mention all of this because you can see their entire family has been a part of our lives. Denise is a successful mental health provider, and when I used to teach my graduate level classes, I always had Denise come and guest lecture in my classes. Today, however, I had the opportunity to experience Denise's therapeutic gifts first hand. No she wasn't giving me therapy (as we are friends) but it was the way she was listening and responding to my issues and concerns that made me have insight into her wonderful skills. It is not like our coffee solved my problems, but it was a glorious feeling to be heard, supported, and valued. In my daily life I am balancing one problem, one heartache, one compliant after the other. Truthfully there is so much one person can take before cracking. 

Denise surprised me with a box of assorted teas and look at these handcrafted chocolates! I absolutely love the fall theme. When Mattie was fighting for his life in the hospital, Team Mattie brought me tea and chocolates practically daily. So to me, receiving these specific gifts ironically reminds me that I am a mom. Not just any mom, but Mattie's mom. 

Don't you know it while Denise and I were sitting at Starbuck's, ABBA's Dancing Queen played. Mind you I go to this Starbuck's all the time with my mom and have never heard Dancing Queen played. So the fact that it played today was not by coincidence. It was another sign that Mattie is with me, he is watching over me, and reminds me I am never alone. Having amazing members of Team Mattie, like Denise, who are involved in my life is proof that the spirit of Mattie is alive and well. 

Wednesday, October 4, 2023

Wednesday, October 4, 2023

Tonight's picture was taken in September of 2005. Mattie was three years old. Mattie absolutely loved spending time in our bed. In fact, in the morning, once he was old enough to walk, he would jump out of his bed, come down the hallway, and then go to my side of the bed. He would tug on me and sometimes I was too exhausted to move, so he'd jump on top of the bed, looking for hugs. In any case, in this photo, it was the evening and we were reading books together and if you look closely, there was a toy truck along with us. Mattie did not travel anywhere without a toy car, truck, or train in hand! It was a telltale Mattie sign. 

Quote of the day: People touch our lives if only for a moment, And yet we're not the same from that moment on, The time is not important, The moment is forever. ~ Fern Bork

My lifetime friend, Karen, sent me an hysterical message today about cats traveling in backpacks. She presented this content to her high school students today, asking them to dialogue about how the CAT FEELS TRAVELING IN A BACKPACK! Not how we feel, but from the cat's point of view!

The question is zany enough to get teenagers engaged, animated, and dialoguing. I love questions like this because in the process you learn a lot about another person's point of view. 

To be honest, I have NEVER seen a cat in a back pack. I had no idea it was a rage right now. My neighbors in Washington, DC used to walk their cat on a leash, which I thought was hysterical enough, but a back pack??? I clearly have never owned a cat that I think could be calm enough to go into such a pack! All I know is both Patches and Indie would fight like no tomorrow, before being placed in a bag. Which is why I always disliked taking either to the vet, because you have to capture the cats first and put them in a traveling cage/bag. 

I told Karen, I would to hear about her students answers to her question! Better yet, I would like to know if they have put their own cats in a back pack and how it went!!!

When I received the mail today, I found a beautiful and heartfelt card, along with this loving sunflower bracelet. My friend, Jean, sent this to me, just because. Jean and her family have been a part of Mattie's cancer journey from the beginning and Jean knows the importance of the sunflower to me. 

When friends send me sunflower things, what this ultimately says to me is that Mattie's story and legacy are alive not just within me, but within them too! What an incredible gift to receive, a reminder of Mattie's beautiful legacy!

Tuesday, October 3, 2023

Tuesday, October 3, 2023 -- Mattie died 731 weeks ago today.

Tonight's picture was taken in September of 2005. Mattie was three years old. That day we took Mattie to a farm to pick peaches. As you can see, Mattie was having a great time. He was our little Farmer Brown. I can't tell you how many peaches I brought home that day. I was making everything from jams, to pies, and muffins. It was our first and last time peach picking as a family, but it was a moment in time I will never forget. 

Quote of the day: Those things that hurt instruct. ~ Benjamin Franklin

Starting on September 23, life in my home has become so challenging. I go through moments when I feel fine, stable, and I can manage things, to then the exact opposite. Where I feel like I am going to crash and burn. Literally and figuratively. 

It has been another nightmare of a day and the one positive was going out to lunch with my parents. Mainly because where we go is like my restaurant version of Cheers (the TV show). Where everyone working there knows me. I can't tell you what a gift this is, as all the staff comes over, gives me updates about their life, their struggles, and they appreciate the support and connection. This gratefulness goes both ways, as I can't tell you how wonderful it is to have dialogue with people who do not have dementia. It is refreshing and for that moment in time, it makes me feel like I am alive, I matter, and I am valued.  

Monday, October 2, 2023

Monday, October 2, 2023

Tonight's picture was taken in September of 2005. Mattie was three years old and that day we took Mattie to a park to walk and explore. However, Mattie loved picnics! So as you can see, I made sandwiches, brought drinks, treats and towels. In so many ways, these were much simpler times in my life, and the funny part is I had NO IDEA!

Quote of the day: The fact that something has happened to a million other people diminishes neither grief nor joy. ~ Author Unkown

This morning, after dropping my dad off at his memory care center, I drove to Washington, DC. It literally took me about 40 minutes to get there. I had a dentist appointment, and though I live in the suburbs, I still use all my doctors from when I lived in the city. To me this dentist office is state of the art, and I am not leaving it. 

In any case, I left my mom at home, and I had about two hours to myself. Who knew that going to a dentist could be respite. The waiting area in the office, has a beautiful picture window, soft music, and this TV screen showing this autumn scene. It is actually quite the screen, because leaves move in the wind, pages in the book flip over, and therefore it is relaxing while animated. It helps to set the tone for the visit. 

When my hygienist came out to get me, she gave me a big hug. She knows I am a caregiver to two people with dementia. Her dad had dementia, so she knows what I am up against. My parents are also her patients. When we got back into the room where she did my cleaning, she lowered the lights and put on "rat pack" music. As she knows I like listening to these golden oldies. In any case, we got to talking and we shared a lot of personal issues with each other. It was almost therapeutic, as we found we have even more in common than we knew. Needless to say, we both go to the dentist office for RESPITE. As I always say, caregivers of all kinds, are attracted to each other. We just immediately understand the one another.

Sunday, October 1, 2023

Sunday, October 1, 2023

Tonight's picture was taken in September of 2006. That week, Peter took Mattie to Boston to visit with his parents. He did this, so I could have the time to focus on studying for my licensure exam. I really needed that time to review material and get myself prepped for the exam in October. I am not a good test taker, so I truly appreciated having this uninterrupted time. While Peter was visiting with his parents, they received this BIG box! Naturally all cardboard boxes were considered very useable by Mattie. Together they constructed a playhouse and Mattie colored and painted it! The beauty of Mattie. 

Quote of the day: We must know the pain of loss; because if we never knew it, we would have no compassion for others, and we would become monsters of self-regard, creatures of unalloyed self-interest. The terrible pain of loss teaches humility to our prideful kind, has the power to soften uncaring hearts, to make a better person of a good one. ~ Dean Koontz

The highlight of my day is I took my parents out to brunch. Our server, who we have gotten to know well, showered us with Fall gifts. Last year she gave me the cute rectangular sign that says.... Autumn Leaves and Pumpkins Please. 

Today she gave me this pumpkin with sunflower plate! I think it goes with Mattie's Mr. Sun perfectly!

She also gave us this lovely battery powered Fall votive!

Lastly I received this pumpkin and sunflower towel! It is very special on a such an emotionally dark week to receive just because gifts!