Saturday, February 17, 2024

Saturday, February 17, 2024

Tonight's picture was taken in February of 2008. That weekend we took Mattie to a local mill and walked around. I can read Mattie's face in this photo! He clearly did not want to stand still and pose for a photo. He most likely wanted to walk and run around, to check things out. For the most part Mattie put up with my need to capture moments in time, but then there were days like this..... when he just wanted to be free and independent from requests. 

Quote of the day: The world would be a nicer place if everyone had the ability to love as unconditionally as a dog. ~ M.K. Clinton

Before my parents moved to Virginia, every September 8th (the anniversary of Mattie's death) Sunny and I would visit Mattie's memorial paver at the hospital where he received his cancer treatment. From there, we would then walk to visit Mattie's memorial brick at the church which held Mattie's funeral (not far from the hospital). Sunny was a constant companion and though he typically liked to walk and explore, he understood somehow that these visits were important and was very calm and patient. 

Sunny was pictured with his two front paws on Mattie's paver!  

For the last week, I have had a migraine that is off the charts. Today, this intense head pain was combined with nerve pain. Literally the slightest touch of my head and face were painful. This type of nerve pain is called allodynia. 

Given all that I have to manage, I must work through this pain. I spent a good portion of the day figuring out finances and working on paying bills. Since this hasn't been a task that I have typically done in my adult life, I have had a significant learning curve. Which adds to my already full plate of stress. In between tasks, I put together homemade turkey soup. In December, I made turkey broth from our Christmas turkey. I froze it and today, I cut up fresh vegetables into the broth and produced a truly wonderful soup. 

At 2:30pm, I got my parents moving and in the car. I took them out for frozen yogurt. This is a good diversion for all of us. We get out, see people, get away from the house, and have a treat together. I believe diversions are vital in life, they are the only way to survive stress, trauma, and the tragedies of life. I learned this first hand right after Mattie died, and for me, it is the only strategy that works. 

Friday, February 16, 2024

Friday, February 16, 2024

Tonight's picture was taken in February of 2004. Mattie was almost two years old and by that point was talking, walking, and fully on! As you can see, Mattie decided he wanted to wear my shoes. He put them on and went clopping around our home. The funny thing is I can remember doing this same thing as a child with my mom's shoes. 

There was something about raising Mattie that brought out another side of me, a side more open to exploration, adventure, and expanding my comfort zone. I learned so much during my seven years with Mattie, and I feel these lessons guide how I lead and live my life. 

Quote of the day: Your place I’ll hold, you will be missed, the fur I stroked, the nose I kissed. And as you journey to your final rest, take with you this … I loved you best. ~  Jim Willis

This was a photo I took of my boy on one of our many walks in the city! The city was just beautiful in the spring and summer. No matter the weather, Sunny wanted to be out and about. Of course as he got older, the heat would wipe him out. So we had to take periodic breaks and I carried water bottles and a portable bowl for him. All I know is with Sunny, I felt more confident and more connected to the world. He taught me the gift of stopping, observing, and appreciating the beauty around us. I will never forget him and the joy he brought to my life. 

This morning after my usual routine, I got my dad to his memory care center, and then went grocery shopping. I have gone from a person who liked to interface with people in the store and I even preferred going to a check out line manned by a person, to now, I want nothing to do with anyone, and I prefer self check out. I guess I like self check out because I feel I have more control of checking out items and bagging them in a way that makes sense to me. It is amazing how one issue or problem in our lives, can alter how we deal with other things in our lives. 

Once I got home, I dealt with unpacking groceries, folding laundry, managing my mom's breakfast dishes and prepping her for her in home physical therapy session. When my mom was going to be with the therapist, I had big plans to do some work! Forget it. I instead received one call after the other, after the other. I was dealing with multiple issues at one time, that by the time the calls were done, my head was spinning. 

No time to process anything or regroup, because by that time, I had to take my mom out for tea. Even while in the car, I received a phone call from my mom's long term care insurer. From that call, this led me to reaching out to my mom's doctors to obtain more health related information. Truthfully it was a crazy day! 

When I finally got home, there still wasn't peace. I had to get my dad settled and then the fun began with helping my mom pay bills. I assure you this is very stressful. It is hard to explain unless you spend some time with my mom. Each month I have to figure out her bills and my own. This alone is a huge undertaking on top of everything else I am facing. Once bills were dealt with, I was on to making dinner. Some times I feel like I am on a treadmill that instead of slowing down, just seems to pick up the pace. I truly believe my current life could be a case study, and I hope what I learn can help so many others in my shoes. 

Thursday, February 15, 2024

Thursday, February 15, 2024

Tonight's picture was taken in February of 2006. Mattie was in preschool and that afternoon, we set up an arts and crafts area in our living room and worked on Valentine's for his teachers and classmates. I loved these kinds of projects and so did Mattie. He was focused and loved working with all kinds of media. By the time we were finished that day, we did over 14 Valentine's and I am so glad we had these moments together. In so many ways, having a Mattie, enabled me to move beyond the typical confines that set in with adulthood. I miss seeing the world through his lens!

Quote of the day: Petting, scratching and cuddling a dog could be as soothing to the mind and heart as deep meditation and almost as good for the soul as prayer. ~ Dean Koontz

I have to tell you..... I LOVE this photo! Look at Sunny! He was literally watching a squirrel on TV! I kid you not. He was transfixed! Sunny loved anything that moved, but what I did not know was he could mentally process something that wasn't in three dimensions! Beautiful and super smart! He was an amazing boy. 

This morning my dad had his 9 week podiatry appointment. Herding my parents to the car to get to an appointment on time is NO small feat, I assure you. Both of them now need assistance and supervision.... there is one of me, two of them! Any case, the doctor told me I am doing a GREAT job with my dad's skin care and feet. Given that my dad has been a diabetic most of his adult life, I am contending with neuropathy in his feet as one of the many side effects. 

While at the podiatry office, I had the opportunity to talk to the office administrator. Turns out he lost his sister (age 35) to colon cancer less than two years ago. He mentioned this to me, after seeing my email address. So naturally we related quickly to each other, as a loss of a loved one, is a uniting factor. Almost as if we belong to the same culture, which speaks the same language. A language that is quite unique to the bereaved. 

Meanwhile at dusk tonight, it has begun! The deer are back and chomping away. The roses haven't even started to leaf out yet, but somehow seeing this sight reminded me that winter is hopefully going to be moving along and spring is upon us. I am not sure whether the warmer weather will improve how I am feeling psychologically, as warmer weather means more time outside. More time outside used to be a wonderful thing, but with my parents, regardless of the weather, I am pretty much locked up inside. In addition, my Sunny is gone. He was the perfect excuse to go out for a walk and now maintaining our house's garden alone doesn't seem as meaningful to me.  

Wednesday, February 14, 2024

Wednesday, February 14, 2024

Tonight's picture was taken in February of 2009. I will never forget this moment in time. After Mattie worked for two hours on creating Valentine's for me in the child life playroom, I had the opportunity to rejoin him and get surprised with his handmade gifts. One of the gifts was this crown of hearts. I put it on my head and his art therapist, Jenny, snapped a photo of us together. I happen to LOVE this photo, because Jenny captured a signature move of Mattie's.... he would touch noses with me and stare into my eyes. I will never forget this ever.

Quote of the day: If you have a dog, you will most likely outlive it; to get a dog is to open yourself to profound joy and, prospectively, to equally profound sadness. ~ Marjorie Garber

Was he not priceless!? One of Sunny's groomers LOVED him. Mandy would dress Sunny up to celebrate every occasion. In fact, she used to bake homemade treats for her doggy clients as well as make holiday ornaments with Sunny's name on it! She was a special groomer. 

This was one of my favorite photos! Sunny will always be my Valentine. He has left a huge hole in my heart and life.  

I try to use this hallway table to decorate for the holiday or season in question. I figure it gives my dad some cues! Any case, this was what the table looked like for Valentine's Day. I am very grateful to be the recipient of cards, gifts, and treats. I am deeply grateful to be thought about and reminded that I am special and loved. 

I really thought I survived the worst thing that could have happened in my life, but now I am facing yet another trauma that impacts my heart, mind, and spirit. Truthfully some days I just don't know where I find the courage, strength, or determination to get out of bed and function.  

After dropping my dad off at his memory care center, I had to take my mom to the hospital for a bone density test. We already know she has osteoporosis, but I think the doctor is even more concerned now given her issues with balance. 

I completed an application for Mattie Miracle and I needed a board member to sign off on it before I mailed it. Thankfully one of our board members met me at the hospital. So while my mom was getting scanned, I met with Brett. 

Brett and I go back a long way, as he was the one who gave me the courage to host a psychosocial symposium for childhood cancer on Capitol Hill in 2012. How did we meet Brett? Well in 2011, a friend advertised our Awareness Walk on a community listserv. Brett looked us up on the internet and then mailed us a case of BBQ sauce (from one of his companies) to raffle off at the Walk. After our event, I wrote to thank Brett. At which point, he suggested that we get together over coffee. So we met with Brett and we quickly learned that he is much more than just the BBQ sauce man. He is a professional lobbyist and his firm decided to take us on as a pro-bono client. From that point, we did many congressional visits together and Brett got to see us in action. I will never forget those lobbying years, advocating passionately for psychosocial care, and how our work has transformed the field. Brett reminded me of this distinction today. 

What I wasn't expecting when we met was to be the recipient of this lovely mocha and chocolate croissant for Valentine's Day. This may not seem like a huge gift, but to me, it meant the world. My heart aches today and to be remembered with kindness will never be forgotten. 

Tuesday, February 13, 2024

Tuesday, February 13, 2024 -- Mattie died 750 weeks ago today.

Tonight's picture was taken in February of 2004. I think I captured this photo because I was always fascinated about Mattie's ability to multi-task. He could do so many things at one time! For example, a TV show could have been going on the background, while Mattie was walking around, collecting books, and playing with toys. You would think therefore that he wasn't absorbing what was happening in the TV show! WRONG! He could tell you and also would enlighten you on what he was creating or building at the same time. 

Quote of the day: When tomorrow starts without me, don’t think we’re far apart. For every time you think of me, I’m right here in your heart. ~ Unknown

My happy pooch! Given that Sunny had a double coat of fur, I was committed to him being groomed once a month. That particular day he got groomed and you can see his Halloween bandana from the groomer. Overall, Sunny did not like water, nor did he like the grooming process. He would get anxious and shake like a leaf whenever he left my side. Nonetheless, once he was cleaned, Sunny loved it. It was important for his fur, skin, nails, teeth and ears. But look at that face! Who wouldn't love him? He was the best companion, so well behaved, and a loyal buddy until the end. 

This afternoon, I took my parents out for frozen yogurt. This is something they both love. While out, I was trying to orient my dad to the season and the month. He truly has NO idea. His memory is declining rapidly and he can't recall things that happened just a minute or so ago. It is downright scary. Without supervision I could see how he could get into trouble or worse be taken advantage of! In any case, once I told him it was February, my mom and I asked him what special day occurs every February 14th? He literally had NOT A CLUE. So I told him it was Valentine's Day. That did not make much of an impression on him. 

While eating yogurt, I pulled on an article on the internet about the most famous love letters of all time. I really need to turn to outside stimulation, because otherwise, my life is like listening to a broken record. I hear the same thing over and over. Living with two people who have dementia is humbling and it takes a great deal of inner strength and fortitude to manage through each day. Both of my parents were intrigued with what I was reading and two love letters on the list caught my attention. They are below.................

General Napoleon Bonaparte's Letter To Joséphine Bonaparte

A few days ago I thought I loved you; but since I last saw you I feel I love you a thousand times more. All the time I have known you, I adore you more each day; that just shows how wrong was La Bruyére’s maxim that love comes all at once. Everything in nature has its own life and different stages of growth. I beg you, let me see some of your faults: be less beautiful, less graceful, less kind, less good…

Johnny Cash’s letter to June Carter Cash

Happy Birthday Princess,

We get old and get use to each other. We think alike.

We read each other’s minds. We know what the other wants without asking. Sometimes we irritate each other a little bit. Maybe sometimes take each other for granted.

But once in awhile, like today, I meditate on it and realize how lucky I am to share my life with the greatest woman I ever met. You still fascinate and inspire me.

You influence me for the better. You’re the object of my desire, the #1 Earthly reason for my existence. I love you very much.

Happy Birthday Princess.

John

I am not sure what jumps out at me from these love letters. Perhaps is the notion that love grows over time, that it doesn't dissipate. It isn't finite. On the contrary, love is infinite and constantly changing and evolving. As Bonaparte said.... 'it doesn't come all at once.' It builds upon itself. Each week, each month, each year together. As one matures, one realizes that the person we love helps us to be the best we can be, to inspire us, and makes our existence on this complex planet worthwhile. We all need this form of love in our lives and as I face tomorrow, it is hard not to feel directionless, disillusioned, and deeply saddened. 

Monday, February 12, 2024

Monday, February 12, 2024

Tonight's picture was taken in February of 2009. This was an incredibly special moment in time. Mattie had so much going on medically and psychosocially, that the notion that he would spend two hours in the child life playroom to create me a box filled with Valentine's and a crown of hearts was truly extraordinary. These are gifts and moments together I will never forget. On this upcoming Valentine's, I miss my littlest Valentine. 

Quote of the day: The whole glorious history of animals with people is about joy and connection. It’s about loving this creature and letting this creature love you.  ~ Jon Katz

The beauty of Sunny. Sunny absolutely LOVED to shake hands, he would even stand up on his hind legs and dance. He was the best dog ever. He was my first dog as an adult and I feel we were meant to be together. We rescued each other and this bond had a profound impact on my life.  

Twice a month, my wonderful cleaning ladies visit our home. I have known one of these women since 2008. We go back a long way together and she knows all about Mattie's cancer diagnosis and death. When they visit the house, I have to get up super early in order to get my dad washed, dressed and downstairs before they come. My alarm goes off starting at 5am on these days. I literally dragged myself out of bed at 5:45am, and started the process which entailed feeding Indie, getting on my coat to get my mom's paper at the end of the driveway, and then making myself tea. This is my ONE perk in my day. I take the tea upstairs with me and sip it while getting showered and dressed. 

Like yesterday, my mom again came into my bedroom. Seemly disoriented. At 7am, she wanted to know what I was doing! She was clearly confused about the time the cleaning ladies were arriving. They typically come at 8:30am, but she thought instead they were coming at 7am. 

I shared my day with Karen, my lifetime friend, and she was exhausted just listening to what I accomplished. I will sum it up for you...

• Got up at 5:45am, fed Indie
• Retrieved the newspaper.
• Made tea. 
• Took a shower and got dressed.
• Made breakfast for everyone.
• Vacuumed up parts of the first floor.
• Cleaned all kitchen counters. 
• Cleaned out litter box and vacuumed around it.
• Got my dad up. 
• Made their bed. 
• Got him showered and dressed. Which entails applying powder, lotion, shaving, brushing his teeth, and getting him clothed.
• Assisted my dad down the steps and got him to the breakfast table. 
• Started laundry and threw out trash. 
• Cleaned up breakfast dishes. 
• Got my dad in the car and took him to his memory care center.
• Went to the local gas station to get one of our car's a safety inspection and emissions test.
• Came home and learned our whole Wifi system was down. FREAKED OUT!
• Got my mom in the car and started chores. I drove to Arlington, VA (about 40 minutes each way) to go to our Mattie Miracle mailbox. 
• Spoke to postal people, who I love, about our mailbox and collected all mail. 
• Drove back home and took my mom for tea and a snack. 
• Then came home, folded laundry, straightened up the house after it had been cleaned, and processed personal and Foundation mail. 
• Got back in the car and picked my dad up at the memory care center.
• Came home and returned emails.
• Started dinner, served dinner, and cleaned dishes.
• Brought garbage bins to the curb. 
• The LIST goes on, but you get the picture of what a typical day in the Farm entails. 

Now with this ridiculous day, it is NO WONDER that I completely forgot that my mom had a PT appointment at our home at noon! The poor therapist. He was texting and calling me! I apologized profusely for NOT being home, because I typically am not this scattered. But given what I juggle in any given day, it is amazing I function at all. 

I received this beautifully delicious treat in the mail today! All the way from NYC! It is a chocolate babka! I am blessed to have a former student, Ariel, who is a faithful blog reader over all these years. In addition, she credits me and Mattie for influencing her career choice. I am very proud of her and her choice to become a nurse, as I have a high regard for this profession. 

All I know is I must have done something right, if I have students like Ariel who continue to keep in touch with me. I can think of no higher honor than to know I possibly made a difference in someone's life. 

Seeing the babka re-energized me and I put a nice dinner together. I roasted some sweet potatoes with olive oil and nutmeg. 

I made chicken with peas, onions, and white wine. 

Sauteed an eggplant and a bell pepper!

The pièce de résistance was the babka! Here's what I know! There is NO WAY we could get something like this in my neck of the woods. Literally tasting it transported me to Europe, it is that good! It is light, moist, and simply perfect. All three of us devoured it and my mom is thrilled that we have more of it for tomorrow. 

Check it out at:

https://www.breadsbakery.com/

Sunday, February 11, 2024

Sunday, February 11, 2024

Tonight's picture was taken on Valentine's Day of 2009, my last February 14th with Mattie. That day Mattie and his art therapists spent hours in the child life playroom creating! I wasn't allowed into the room until Mattie's projects were done. When I was invited in, Mattie surprised me with a Valentine's day box filled with cards, hearts, and unique creations. Mattie also made me a crown of paper hearts that was placed on my head. I will never forget that moment in time! So many of these special creations I turned into a collage (MANY YEARS LATER) right before we moved into our house in 2021. This collage hangs in my office and I see it daily. 

The collage in the lower shadow box was what I created for the many wonderful artistic items in my Valentine's box. The collage above it were items Mattie created in preschool! He was prolific and I cherish these items. 

Quote of the day: Pets are humanizing. They remind us we have an obligation and responsibility to preserve and nurture and care for all life. ~ James Cromwell

Sunny and me at Great Falls. Sunny absolutely LOVED his walks and outdoor adventures. I miss my walking buddy and since Sunny has died, I haven't walked outside at all. I have no interest what so ever. 

To my surprise, I received about 20 notecards in the mail yesterday. These cards were designed by Kim Richards, the local artist I had hired to generate four large paintings for our family room. The painting were going to capture the beauty of our property, the house, and of course Sunny. Given what has occurred in my life, I have put this project on a permanent hold. I can't tell you how this saddens me because this was something I was enjoying. I loved watching the compositions unfold, discussing changes and colors with Kim, and was looking forward to actively creating family heirlooms and memories. 

When I saw the scene on this card, all I could think of was life was so much better at that point in time. Similarly, when Mattie was diagnosed with cancer, I learned how profoundly one's life can change on a dime. Life is fragile and so much of our destiny is really out of our control. We can look for explanations, for causes, and try to bargain with God. But at the end of the day, things happen that I can't understand, that I can't wrap my head or heart around, and this quandary of not knowing, can generate great anxiety and depression. It can also be all consuming if you don't keep it in check. 

Sunday is the only morning I can sleep passed 6:15am. I truly did not want to get out of bed today. At 9am, I was almost finished getting dressed and my mom came flying into my bedroom in a panic. She was in a panic, as I learned, because she did not hear me. So she deemed that something was very wrong with me. Her panic, caused a panic within me, and these days, I don't need much to set me off. Later in the day, I took my parents to brunch. This is our one meal a week that we enjoy, and that I don't cook. While eating a song came on in the restaurant. Whenever I hear it, it stops me in my tracks. The song is, Have a Bad Day. 

Literally when I hear this song, all I can think of.... I didn't just have a bad day, I have had a bad life. What I particularly love about this video occurs toward the end, with a drawing of a woman sitting on a bench. I absolutely love how the two individuals who draw on it are building upon the story. This the beauty of human relationships. We all come to things with a different lens, and to me nothing says that louder than watching the drawing in this video. Through this drawing, feelings and emotions are conveyed that actually bring happiness and a new outlook and perspective to the other recipient. We as humans have the ability to help one another and I have found that the greatest joy in life comes from the power of that connection.