Saturday, December 2, 2023

Saturday, December 2, 2023

Tonight's picture was taken in November of 2004. Peter's mom sent us this cat toy for Patches. However, look who loved the toy more! That's right, it was Mattie. Mattie had a great old time with this because when he squeezed the tube, a toy mouse would pop out. Life with Mattie was just that..... full of life, energy, and new and exciting adventures each day. Even the ordinary with Mattie was extraordinary. The loss of his life has had a profound impact on our lives. 

Quote of the day: When you are on the knife’s edge — when nobody knows exactly what is going to happen next, only that it will be worse — you take in today. So here we were, at the trailhead, for a cold day’s walk. ~ Anne Lamott

For December, it was a beautiful weather day. After getting my dad washed, dressed, and downstairs for breakfast, the plumber arrived. He walked me through how to shut off hoses for the winter and bleed the water lines out so that there would be no water in the pipes over the winter. I have known this plumber since 2021, when we moved into the house. He has done so much work for us that I have his cell phone number and can contact him at any time. Just a good and solid soul! I cherish people like this in my life. 

I was going to devote today to assembling Mattie Miracle's mass mailer, but I decided instead to use the afternoon to continue to clean up the backyard and prepare the plants for the winter. I can't tell you how much debris I collected today and I wish I could say I was done, but I am NOT! I did get a jump on things and it was lovely to be outside with Sunny. Of course Sunny got a good walk in today in the woods and was a happy camper. 

My focus tonight and tomorrow is our mass mailer and what is totally amazing, is what I can balance and get accomplish in any given day. It is a miracle and now more than ever I feel Mattie's presence with me. He and I were close, like two peas in a pod, and I know if he were alive today, life for me would look quite different. 

Friday, December 1, 2023

Friday, December 1, 2023

Tonight's picture was taken in November of 2005. Mattie was three years old and another favorite thing of his to do in the late afternoon, was to take a warm bath and change into his pajamas. During the winter months, doesn't that sound like the perfect thing to do?! Mattie loved climbing onto our bed, jumping on it like a trampoline, and I can't tell you how many books we read together on this bed. Mattie was better than an alarm clock. On the weekends, he'd get up early, walk down the hallway and come to my side of the bed. He would reach out to wake me and some mornings I just did not feel like moving. So I would help him up into the bed in hopes that he would rest! NOT Mattie's style, he had two modes, on and off. 

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

This morning at 5am, my eyes opened up. Before I moved my parents in with us, I would have to say that morning was NOT my thing. However, for two years now, I have been conditioned to wake up before 6:30am. In addition to getting conditioned, I have a heightened level of anxiety. So once my eyes open, there is NO way I could possibly rest or sleep. Sleeping and eating right now are challenging for me because of my anxiety. I have lost 15 pounds without trying and I am rapidly approaching the weight I was when I got married. 

I remember decades ago when my mom got sick with pneumonia. I was in college and she landed up in the ICU for over three weeks. She was very sick as her pneumonia turned into sepsis and organs were shutting down. I can recall how thin my mom was at that point in her life. It wasn't from getting sick per se, but as a consequence of intense caregiving for my maternal grandmother who suffered a stroke. I remember back then being in my early twenties and absorbing and observing how caregiving can impact all aspects of one's life. Now decades later I see it within myself, and yet right now being busy with caregiving keeps me moving and my brain focused on something. Which is important for me, when these bouts of intense anxiety take hold of my life. 

While my dad was at his memory care center today, I got some work accomplished. I then took my mom out for tea and I have to say I am so grateful to have our local Starbuck's so close to home. I have gotten to know everyone who works there, and they are so kind, as they walk teas and treats over to our table for us. Preventing me from having to jump up and down! These small acts of kindness make such a big difference in my life. 

I woke up today with a "can do" attitude and spirit. These bright moments do not happen often for me, but this spirit enabled me to be productive, to manage my dad's needs calmly and patiently (which I do anyway, but today was even more intentional) and I tried to tackle issues and problems as they arose with a clearer head. I sometimes feel like I am drowning in tasks. But today, when that feeling arose, I just kept telling myself, I don't have to solve everything immediately. I do what I can do. My newest mantra! 

Thursday, November 30, 2023

Thursday, November 30, 2023

Tonight's picture was taken in November of 2005. Mattie was three years old and as you can see, he was doing one of his favorite activities ever! Painting with his feet! Don't ask me why he loved this, but he did. The messier the better. However, what I loved about Mattie was he contained his mess to a defined space! I can't tell you how many cards and creations he made over the years using those little feet!

Quote of the day: Grief is visceral, not reasonable: the howling at the center of grief is raw and real. It is love in its most wild form. ~ Megan Devine

It has been quite the day! It is 10pm, and I have been going non-stop. Therefore, I am not writing much, and in hopes that tomorrow is a better day. 

Wednesday, November 29, 2023

Wednesday, November 29, 2023

Tonight's picture was taken in November of 2005. That Saturday we took Mattie to the National Geographic Museum in Washington, DC. Outside the Museum were these wonderful bronze statues of primates. As you can clearly see, Mattie loved this one and was trying to climb on its back. I remember that moment in time like it were yesterday. Of course back then I thought we would have many more visits to this Museum and many more family outings. Life however had other plans and what I learned is that we may think we are in control of our lives and destiny, but truthfully we are lucky if we control 1/16th of what happens to us. 

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

I just have to laugh! I moved out of Washington, DC in 2021, and do you know I got summoned for Jury Duty in the mail today! Still! With DC, it is like clockwork.... every two years, you get called. When I lived in the city, I always dreaded it, because I knew what would be awaiting me in the mail two years after completing a prior jury service. Truthfully it was like receiving an anniversary card, it was that well timed! However, what makes me laugh is despite letting the city know in 2021 that I moved, they are still after me, two years later. Any case, I uploaded my driver's license again, and of course got disqualified from service because of my address. 

I had to go to the bank today to get a new ATM card. Ironically I rarely use my card, so when I moved from the City to the suburbs, apparently my card got canceled. Don't ask me how. I am very familiar with our local bank branch because I take my mom there often. So the managers and staff know me and my mom. I was so impressed with the bank manager today, as she spent a great deal of time with me and when she learned that Mattie died, her reaction was truly beautiful and compassionate. She wanted me to know that I am a special caregiver, and how the bank is so impressed with the care and attention I provide to my mom. As I told the manager, my blessing in my life was to be born to two devoted, protective, and loving parents. Which is the greatest motivator for being the best caregiver possible to them in their 80s. 

Tonight I had my third therapy session. My time with this woman maybe short lived, because I feel she doesn't understand trauma or grief and furthermore is prescriptive. She wants me to take classes on things and also join a support group. Telling me what I should do doesn't sit well with me, especially since I am NOT a support group type of person. When I am in the midst of having various feelings and issues, the last thing I want to hear are other people's problems. I do not find it normalizing, and I learned this early on about myself when I was a graduate student and had to participate in a group process. I did not do well there, and I most definitely did not do well in the support group sessions I attended when Mattie was diagnosed and then after he died. Every group encounter I have had is negative. I do not know if that is a reflection on me or just not the right group. But frankly, I have too much going on now to invest in another disaster. The lack of insight and sensitivity of the therapist set me off and left me feeling like..... do I really need this? This woman is on borrowed time and if you aren't part of my solution, then I deem you as part of the problem. 

Tuesday, November 28, 2023

Tuesday, November 28, 2023 -- Mattie died 739 weeks ago today.

Tonight's picture was taken in November of 2006. Mattie was four  years old. This was an activity he absolutely LOVED to do in our living room. Mattie enjoyed building models and then painting them. As you can see he was working on building a dinosaur. He assembled the puzzle, glued it, and then painted it. The beauty of Mattie was he understood the concept of making a mess and knew he had to keep the glue and paint on the newspapers. I never had to stop him from running around the house spreading paint everywhere. In this sense, he was exactly like me!

Quote of the day: Grief ... gives life a permanently provisional feeling. It doesn't seem worth starting anything. I can't settle down. I yawn, I fidget, I smoke too much. Up till this I always had too little time. Now there is nothing but time. Almost pure time, empty successiveness. ~ CS Lewis

I am not a big social media person. In fact, if I did not run the Foundation, I probably wouldn't even have social media accounts. But because I need to spread awareness about Mattie Miracle, I manage a Facebook, Twitter, and Instagram account. Over the weekend, I received a text message from my good friend Mary Ann. She clued me in that something was wrong with my Instagram account. She asked if I sent her something and I said no. So she reported the interaction to Instagram. However, from there I received a cascade of messages, all kinds.... texts, emails, and phone messages from friends warning me that someone was posing as me on Instagram. This person set up an Instagram page that looked VERY similar to Mattie Miracle's and the name of the page was VERY close to my actual Instagram URL. In addition, this person was individually contacting my friends, asking them how they were doing, making pleasantries and then encouraging them to apply for a government grant. Now here is the interesting part about all of this!

Every single person who was contacted knew immediately it was NOT me! I am talking about people who know me well to people who know me only on the periphery. One of my childhood cancer friends was so disturbed by the messages she was receiving from the hacker that she literally called me on the phone. My friend has been going through her own trauma, so we haven't connected live in two years. But this hacker situation bothered her so much that she reach out to me. We both determined it was fate that we re-engaged at this point in our lives. Talk about something good arising from something sinister. 

But the message I took away from all of this is that people who have crossed my path (no matter what the capacity), seem to understand the high moral principle that guides my life. They knew immediately that I would never solicit them for funds in this manner and my cancer friend literally told the person who was pretending to be me that they were scum! 

Given all that is happening in my life now, I can't tell you how much it meant to me that my friends are looking out for me in this way and took the time to remind me that I live my life with high integrity and I have to say it is flattering to receive such feedback. 

Monday, November 27, 2023

Monday, November 27, 2023

Tonight's picture was taken in November of 2007. This was a typical weekend for us, bundled up during the winter and exploring Roosevelt Island. It was our nature's playground, only minutes from our city townhouse. Mattie loved collecting items along the way from rocks, leaves, to acorns and sticks. Just seeing this pathway even today through a photo brings back special memories in my mind and also illustrates where we were most at peace. We journeyed to this place in good times and bad.... we visited the Island soon after Mattie was diagnosed with cancer, we visited after Mattie died often, and also walked daily during COVID (before the park was closed to the public because of the health crisis). I miss this space and those special family times. 

Quote of the day: Grief, I now understand, is a sort of madness, in the same way that falling in love is madness. ~ Patrick Swayze.

The last set of candy and snack items for the Foundation were delivered today. Truly a whole mini van was filled to capacity and items were delivered to the National Institutes of Health in Bethesda, MD. I am so grateful to our supporters for their generosity and to my friends for delivering items all over town, when I just couldn't this year. 

After doing a bunch of chores today, which also included cutting down and back dead plants in our backyard, I took my mom to Starbucks! Starbucks has become my Cheers. It is a place we both feel comfortable visiting and while we were there, we block out our troubles, in order to engage with the world and feel 'more normal.' It is a two hour break from our daily reality. 

As promised, I wanted to show you some of the decorations I put out on display this weekend. The reindeer candle holders were given to me by Peter's mom, the Lenox sleigh I bought in an antique store years ago, and the green candle trees, I bought in Los Angeles in 2020 at CVS no less!

I love the pony wall in our kitchen. I try to put themed items of it to reflect the season. On the wall is a line up of all the plastic Santa's I had as a child. Mattie loved playing with my Santa's too! You will also see a German wooden carousel. It belonged to Peter's maternal grandmother. Then it was passed down to Peter's mom and now to me. 

I can remember playing with all these Santa's as a child and the beauty of being a child, was I had no idea how painful the future could be. 

I love this countertop in the kitchen, as I try to put themed decorations here as well. 

Our dining room table. 

I love this poinsettia bough! Typically I put up Christmas stockings too, but I was not in the mood for that this year. 

My dad came home from his memory care center today with this lovely ornament. He colored this bird in himself, the center laminated it and I hung it on our rubber tree plant. My dad is very PROUD of his creation, and we praised him and made a big deal over this, because typically my dad shies away from anything art related. But we told him he is the next Grandma Moses! Any case, this ornament hangs on the tree, and where my dad sits in the family room, he can directly see his handiwork!

 

Sunday, November 26, 2023

Sunday, November 26, 2023

Tonight's picture was taken in November of 2007. Mattie was visiting Peter's parents that week for Thanksgiving break. Mattie's cousins came over and they were playing on the swing and jumping into leaves. This wasn't something Mattie had ever done before, so he was cautious to try it. Nonetheless, he did it and enjoyed jumping into the leaves. These were special moments and at the time, I may not have fully appreciated them as I do now. 

Quote of the day: When you are on the knife’s edge — when nobody knows exactly what is going to happen next, only that it will be worse — you take in today. So here we were, at the trailhead, for a cold day’s walk. ~ Anne Lamott

Today my mom turned 88! I got her flowers, a card and gifts! But most of all I wanted to take my parents out today because I wanted this day to be special and about her. Our favorite server, Cheryl, decorated the table, brought my mom gifts, and the manager of the restaurant gave us an $100 gift card to apply toward the birthday lunch!

Given all that I am facing these days, the conclusion I have come to is that no matter how old you are, you are never too old for a mother's love. 

This is Cheryl! She has become a true friend. She sends me text messages, cards, and gives me gifts too. She is one of the people I value in our support network. 

This is Erica, one of the managers at the restaurant. We have known Erica for two years, and we met her when she worked in Reston. She gave my mom a beautiful card and wanted her to feel special! She accomplished her goal.  

Cheryl gave me a card of support today, along with this butterfly trinket. She knows how dearly I love butterflies. 

On the back of the butterfly it says..... One Day at a Time! It is a philosophy that has guided my life in 2008, when Mattie was diagnosed with cancer. I think childhood cancer has left me present focused permanently, but when I feel anxious and traumatized as I do now, I tend to live life minute by minute. It is the only way I know how to survive. 

My mom and I both had lamb stew today! It was a special treat, as one of my favorite meats is lamb! I am so happy that I took my parents out, that I could make my mom feel special, and at the end of the day, I live my life ALWAYS knowing that I am doing the right thing. I am guided by love, moral principles, and the commitment I have to those in my life.