Saturday, December 16, 2023

Saturday, December 16, 2023

Tonight's picture was taken in December of 2003. This was Mattie's first pony ride. It took place at Griffith Park in Los Angeles. I was so nervous about Mattie going on a pony, that Peter walked right besides Mattie. Mind you Mattie was strapped in as was the horse. But I was always cautious and anxious he could get hurt and tried to mitigate anything from happening. Which is ironic, because what I couldn't control, was his cancer diagnosis and death.  

Quote of the day: Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim. ~ Vicki Harrison

Today felt like spring! While my dad was working with his physical therapist, I decided to begin winterizing our roses and our crape myrtle trees. I was on a roll. I literally filled up a large garbage bin with greens, then moved onto filling up three large bags. The amount I did today was incredible. I even did clippings of dead bushes. It was a large undertaking but since the weather was glorious, it was wonderful to be outside, to be away from conversation and other demands. I don't think Sunny was happy, since he did not get a walk in, but he stayed close to me and monitored my progress. 

When I got back inside, I did my usual chores, and then got my parents up, moving, and in the car. We went to the Cheesecake Factory tonight, because I was not going to cook after the intense workout I just had. We had a lovely server tonight, who was patient and truly professional. My dad dropped his napkin on the floor countless times. Each time the server picked it up and got him a fresh one. Very thoughtful. Needless to say at the end of the meal the server thanked us for being so kind and giving him positive feedback. He says he works full time and goes to school and sometimes it is hard to remember that having a positive attitude really can make a difference to his customers. I told him his energy was very much appreciated and what this reminded me is everyone needs to feel appreciated, to feel like they have a purpose. Such feedback can transform someone's day, as this server told me tonight. 

Friday, December 15, 2023

Friday, December 15, 2023

Tonight's picture was taken in December of 2003. Mattie was a year and half old and that Christmas we took Mattie to Los Angeles to spend the holidays with my parents. We introduced Mattie to Travel Town in Griffith Park. It is a park filled with antique train cars, where kids can climb aboard and explore. This was right up Mattie's alley. Ironically I never visited Griffith Park when I lived in LA, it took Mattie's presence in my life to explore this amazing Park. Needless to say, every time we visited LA, Mattie requested a trip to Travel Town. 

Quote of the day: There is not a reason for everything. Not every loss can be transformed into something useful. Things happen that do not have a silver lining. ~ Megan Devine

When Mattie first died, I remember how I dreaded weekends. Weekends were once family time, where we would go out and explore the world as our sweet threesome. However, Mattie's death impacted what and how we re-entered the world. There were NO more playdates, there were NO more birthday parties, and NO more school events. We not only lost Mattie, we lost our way of life, and our social circle that made up that way of life. It was gutting and honestly I do not know how we survived that grueling torture. I may have moved forward, but I do not forget the pain, anguish, and isolation. 

Though my life looks differently now, there are many commonalities. The feeling of being different jumps back out at me. Being different and unique are not always great things. But what I know is in times of great stress and anxiety, nothing looks right in the world and I prefer to retreat and put barriers up between me and the rest of the world. Why? Most likely for many reasons. It feels safer to do this and on top of that because I feel so different from others, I do not care to hear about their lives, their conversation, nor do I want sympathy or another's insights. This is not typical behavior for me, but it is my form of survival and though it may look strange to those around me, it is what I need to do to make it through each day. 

Thursday, December 14, 2023

Thursday, December 14, 2023

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and spending Christmas with my parents in Los Angeles. My parents set up a room in the house for Mattie to play, to have all his toys, and videos. As you can see, back then my dad was alert and animated. He and Mattie were singing along to a video and naturally Mattie's sippy cup wasn't far away! That cup was connected to Mattie at all hours of the day and my joke was that Mattie consumed so much milk that we should have invested in a cow. 

Quote of the day: I could not count the times during the average day when something would come up that I needed to tell him. This impulse did not end with his death. What ended was the possibility of response. ~ Joann Didion

It was another crazy day on the farm. I did my usual routine of getting up early and managing my dad. At 10:30am, my dad's physical therapist came, and while she was working with him, I went grocery shopping. I have been able to secure a script for my dad to receive physical therapy at his memory care center. So now he will get PT four times a week. I know my dad isn't looking forward to this but I need him to be able to walk, climb steps, and sit and stand. There is nothing to hold my dad back physically other than his desire to be sedentary. I know I can't fight this battle alone, which is why I am grateful to have the support of wonderful physical therapists. 

In the early afternoon, I had a Foundation board meeting. I have to say I am not a big fan of ZOOM and on-line platforms, but it certainly streamlines the process when schedules are busy and we are all in different locations. I truly credit my years of experience working on the licensure board to my abilities now to create an agenda, lead a meeting, try to be open to all ideas, feedback, and input. I really miss my days on the licensure board, but those skills are never lost. Instead, they are applied to my Mattie Miracle role, which is other than raising Mattie, the most important job I have ever had! Thankfully I have an amazing board committed to our work and our success. 

After the call, I ran around doing chores and then took my parents out for a bit to eat. Once home, I helped my mom process bills and manage her accounts. All I know is over the course of the last couple of months, I have had to learn so many news things, and though I could puddle in the corner, I don't! I know people rely on me and there is no other greater motivator for me. If I know my presence is necessary in order to help someone, I will rise to the occasion every time. 

Wednesday, December 13, 2023

Wednesday, December 13, 2023

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and that Christmas we went to Los Angeles to spend the holidays with my parents. In my parent's backyard, they planted citrus trees. As you can see my little 'Farmer Brown' loved collecting oranges, lemons and grapefruits. Literally he could do this for hours. He would collect them, and then sort, stack and play with them. Who needs toys, when you have access to nature. 

Quote of the day: The people we most love do become a physical part of us, ingrained in our synapses, in the pathways where memories are created. ~ Meghan O’Rourke

Another day in paradise here. The question is what didn't I do today? I feel like I did every chore possible from laundry, cooking, cleaning, getting gas for the car, grocery shopping, picking up the car getting serviced, mailing things at the post office, taking my mom to tea, my dad to his foot doctor appointment and tonight I had a therapy session. 

Tonight was my fifth session with the therapist. I think last week she learned first hand that being prescriptive and directive with me doesn't work. It doesn't work especially when you aren't living my day to day existence. But the beauty of last week is we talked through our differences and this week, we picked up where we left off. 

By the end of the session, the therapist called me a "warrior." I am not sure any one has ever used that term with me. I certainly think Mattie was a cancer warrior, but when she reflected back on my life and what I am coping with now, she is right a warrior is more than appropriate. A warrior is not just a survivor, but when facing adversity, doesn't back away into a corner. Instead, charges in, is resourceful, and is committed to protecting those around them. So tonight as I write this blog, I have to say, I am proud to be called a warrior, as I am a fierce advocate and protector of those in my life. 

When I came home I was greeted with a box. Inside was a fresh rosemary plant, with Christmas lights, jingle bells and a beautiful reindeer ornament. This gift was sent to me by my friend's (Margy) sisters. Margy lost her battle to ovarian cancer in 2021. She was a fierce childhood cancer advocate and I am so honored to call her a friend. In her memory, Mattie Miracle runs our M&M (Margy & Mattie) Wishes Program, to provide grants to children with cancer for a fun activity or wish list item. 

When Margy died, I had the opportunity to meet her beautiful sisters. Her sisters know I am going through a hard time and that I had no intention of putting up a Christmas tree this year. Which is why receiving such a thoughtful gift has truly touched my heart. They wanted me to know I am loved and have their support. What I am finding one by one is that friends are reaching out to me daily because they are reminding me that I am always there for them, I always listen, and I freely give of myself. I think the best gift I could receive at Christmas, which is better than anything I could open, is to know that I am blessed to have an incredible network of women in my life. 

Tuesday, December 12, 2023

Tuesday, December 12, 2023 -- Mattie died 741 weeks ago today.

Tonight's picture was taken in December of 2003. That Christmas, we took Mattie to Los Angeles to spend the holidays with my parents. It was Mattie's first Christmas in LA and I knew my parents were excited. My mom put up a miniature tree for Mattie in the kitchen and he loved decorating and playing with it. Back then I really thought there would be MANY MANY more Christmases like this together. 

Quote of the day: When my dad died, I didn’t know where to put my grief. The first time I had a miscarriage was the same. I didn’t know how to fit what I was feeling with normal, everyday life. For me to go and write was like a way of shaping something so big that I would otherwise be overwhelmed. ~ Rachel Joyce

I got up at 5:30am today in order to get out of the house by 9:15am, to get one of our cars to the dealership for service. I had never been to this service center before so I really had no idea what to expect. But one thing is for certain, I have become even more assertive and as a result I can get a lot accomplished and done effectively. The car dealership tried very hard to accommodate me and even though they said they couldn't get me a loaner car the day before, today they magically made it happen. Which I appreciated. 

Though it was nice to get a loaner car, I was actually looking forward to sitting for a few hours with a book, my tea and some snacks. It was going to be my time without having to listen to any one, no caregiving demands, or tasks to do. It wasn't meant to be. Once I got the loaner, I went to the grocery store and then drove home to do more chores. 

Later today, I had an appointment at the bank. I have been getting the run around with trying to create a PIN for my ATM card. I couldn't accomplish this on-line or by phone. Though I tried to make a bank appointment on-line, all the appointment times were booked for a month! NOT acceptable. So yesterday I marched into the bank and said I needed appointment and I was not waiting a month. They accommodated me today and the banker I met with was a miracle worker. She was very customer focused, efficient, and kind. If we could only clone her! I view today as a day in which I was very productive. 

As I told the therapist last week, I celebrate the small stuff. I also told her my dad's analogy. When I was doing my dissertation, I felt overwhelmed, as that was a huge research endeavor. Back then my dad would say that if I wanted to consume an elephant, I wouldn't do it all at once. Instead, I would need to take little scoops each day. Of course none of us are going to eat an elephant, but you get the analogy. Sometimes looking at the big picture is NOT helpful. But when you take small steps toward the bigger picture, eventually you will reach your goal successfully. Needless to say, this is an analogy that has stuck with me over all these years. 

Monday, December 11, 2023

Monday, December 11, 2023

Tonight's picture was taken in December of 2003. This was Mattie's second airplane trip to Los Angeles. At a year and a half old, Mattie learned to become accustomed to traveling. Unlike me, he LOVED it. The turbulence did not bother Mattie in the least and just like on land.... there was no napping. So I had to come with a big bag of tricks to keep Mattie occupied and entertained. I recall back in the day that I actually shared toys and books with fellow parent passengers around me who were desperate to quiet down their children. 

Quote of the day: Grief is not a sign that you’re unwell or unevolved. It’s a sign that love has been part of your life, and that you want love to continue, even here. ~ Megan Devine

It was another full day on the Farm! After dropping my dad off at his memory care center, I came back home, did a few chores and then got my mom in the car. I drove to the city for her to have her hair and nails done. This salon is in the same neighborhood that I used to live in. It saddens me to see how the city I once loved has been taken over by graffiti, homeless encampments, and garbage. In fact it is almost unrecognizable. This is yet another example of another big change in my life, as I believe you can NEVER go home again. I learned that bitter lesson at a young age, when my dad's job moved us from New York to Los Angeles in the 1980s. Leaving the home I knew and loved at the age of 15 was far from easy. Yet as time moved along, what I quickly realized was I did not fit in anywhere. I did not view Los Angeles as my home and I was no longer a part of life in New York. Once again, I am faced with a similar feeling. In fact in many ways, I wish I never left the city or my townhome. Life was ironically simpler there and I was surrounded by a community of people who looked out for us for over two decades. 

While at the salon today, I had a chance to chat with my manicurist. I have known this woman since Mattie died in 2009. Prior to that, I rarely got my nails done. But I will never forget after Mattie died, I went to get my hair cut for the first time and I was thoroughly traumatized. The owners of the salon understood and wanted to do something nice for me, so they treated me to nail service. I was reluctant, but I did it. This is how I established the connection with my manicurist. We have been together since 2009, and we have shared the ups and downs of our lives together. In fact, I probably know more about her life than some of her family members. In many ways this woman and I are very much a like. We are devoted to our families, put them first, are loyal, fierce, and strong minded women. Which is why we appreciate each other and can understand where the other one is coming from. I always find it amazing who can rise to the occasion and help me, when I am at my lowest moments. 

Later today I went to Bank of America. This is where our Foundation has its account. I am trying to activate the PIN on my card. How difficult could that be? I assure you.... DIFFICULT! I have tried calling, I have even tried booking an appointment with a banker on-line! FORGET IT. I literally had to drive to the bank today to schedule a live appointment for tomorrow. Talk about a lack of customer service. We shall see what tomorrow holds, but what I know is it will be another EARLY start as I have to take the car in for service by 9:40am. That may not sound bad, but before I can do that, I have to feed the animals, give Sunny chemo, get myself showered and dressed, make breakfast, get my dad up, showered, dressed, and downstairs. Literally I am getting up at 5am, to make all of this happen. I look back at the days before I moved into this house and the notion of getting up at 5am, was totally out of the realm of possibility. Some life changes are not always for the better.

Sunday, December 10, 2023

Sunday, December 10, 2023

Tonight's picture was taken in November of 2001. I was four months pregnant with Mattie. I have no idea what on earth I was wearing, other than it was probably comfortable! Given that the baby was going to be coming in April of 2002, I was going through a major clean out process and was transforming our walk in closet to accommodate our new family. I remember that moment in time, as some people call it "nesting." There is a lot of truth to nesting, as I was very focused on cleaning and preparing! Our townhouse had the best walk-in closet and I know some neighbors actually used their walk-ins as an office space! But that closet was a God sent, as it enabled us to store so much of our family's things and once Mattie died, it became part of Mattie Miracle headquarters. 

Quote of the day: Anyone who has lost something they thought was theirs forever finally comes to realize that nothing really belongs to them. ~ Paulo Coelho

I spent a good portion of today organizing myself. I created a filing system to keep track of papers all around me, I did my usual chores, and worked on Foundation things. Somehow all while juggling my dad and his needs. Mid-day, I packed my parents up, got them in the car and we had brunch out. We only go out for a major meal now once a week. Though my dad misses going out three or four times a week, it is what we need to do for a little while until I get stabilization in our lives. Every Sunday, we go to the same place and have the same server. Cheryl has been a part of our lives since my parents moved here in 2021. We share our ups and downs together and I am very grateful to have her in our lives, as well as the manager at this restaurant. Amazing women, who value me as a person, and understand the multiple roles and stresses I juggle. 

It is going to be another full week of caregiving and balancing car service, Sunny appointments and the list goes on. Truly I can't look at the bigger picture in my life, because if I did I probably wouldn't get out of bed. Instead, I learned with Mattie's cancer journey to be present and to get through the moment. The discipline of living with childhood cancer and then Mattie's death have prepared me for life's uncertainties and new traumas. I am not saying I like any of them or they are easy. But what I do notice is I have instinctual coping skills that were learned in 2008 and 2009, and like a plane going into automatic pilot, under duress my learned coping skills automatically kick in.