Saturday, December 5, 2020

Saturday, December 5, 2020

Tonight's picture was taken in December of 2002. Mattie was 8 months old and adjusting to eating in a high chair, but LOVING his bottle. We used to get a big kick out of watching Mattie's eyes when consuming a bottle. He almost had a dreamy like state to him. At times he would close his eyes, but continue to drink his bottle. It was memorable! 

Quote of the day: Tonight's coronavirus update from Johns Hopkins.

• number of people diagnosed with the virus: 14,542,103
• number of people who died from the virus: 280,634

We got up early today to get the day started. As I was very concerned about getting the candy and snacks from our November item drive to Children's Hospital at Sinai, in Baltimore. Our Georgetown University Hospital supply was delivered in November, but driving to Baltimore requires more planning. 

We rented a Uhaul van at 10am, got to our friend Ali's home by 10:20am, and started loading the van. Ali has the best garage, as it is detached from her home and it the perfect place to host a community drive. We were on the road to Baltimore by 10:50am. 

We arrived in Baltimore at noon, with quite a bit filling up the Uhaul. We are VERY VERY grateful for having the best supporters. As our supporters helped us stock our FREE snack and item carts located at hospitals for a year!

Peter unloaded six bins filled with vacuum sealed candy. We also had a ton of snacks in boxes to donate. You can see the boxes and bins all around us. Pictured with me is Julie (left, the VP of philanthropy at the hospital) and Geannie (right, the director of major gifts to the hospital). 

When we got back from Baltimore and returned the Uhaul, we did not get home until around 3:30pm. By that time, Sunny was VERY ready for a walk. So we walked him for an hour on Roosevelt Island. 

After our day of running around, out came the champagne tonight. The recruiting firm that found Peter on linked in and connected him to his new job opportunity, sent the champagne while I was in Los Angeles. So tonight we are celebrating Peter and his job!

Congratulations Mr. President and CEO! Very proud of what Peter endured this year and his efforts to find a new job. 

Friday, December 4, 2020

Friday, December 4, 2020

Tonight's picture was taken in December of 2002. Mattie was 8 months old. That evening we went over to my brother-in-law and sister-in-law's home for dinner. While there, we put Mattie into a "jumper." It was the world's best gadget that hangs from a door threshold. Mattie could stand in it, jump in it, and even swing. He absolutely loved it. We received a jumper from a friend of mine, and we used it every night for the first several months to gently swing Mattie to sleep. Of course once Mattie was sleeping, picking him up from the jumper and placing him into his crib was like mission impossible. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 14,282,494
• number of people who died from the virus: 277,958

In February our neighbor, JP, died. We have known JP ever since we moved into our complex, which was in 1994. It is hard to believe we have been here for 26 years. For some reason it doesn't seem that long, but that could be because for me time is existent! The years before I had Mattie seem like a lifetime ago and forget about the years since Mattie died. In a way, I feel like I live in a time capsule. So reflecting on the fact that I have been in the same place for 26 years doesn't seem possible. I came to DC as a graduate student, and back then I couldn't even conceive of childhood cancer much less think about how it could affect my life. 

However, JP's death has shown me the ugly side of death. Not that there ever is a pretty side to it. But JP appointed two executors to his will. He selected these two friends because they practically grew up together and were very close. Well close until they all had a falling out with each other. NOTE TO SELF, if you have a falling out with the person you appoint as your executor of your will, UPDATE your will and appoint a NEW executor. 

When JP died, we learned that both executors of his will refused to serve in this role. Which left things in a quandary. JP's family doesn't live in our region and therefore after they came here to assess the situation and met Peter, they decided to appoint Peter to this large task. Which is actually a lot to ask of someone. But Peter took it on. Of course all of this is happening around the time of COVID-19. 

Since JP's executors refused to serve in the role, legal paperwork had to be filed with the DC courts to appoint Peter. Peter and JP's family are working with a law firm and filed these papers with the court in the spring. It is now December, and we have yet to hear from the court regarding the appointment of a new executor. So instead JP's estate has been sitting idle, with the family having to pay rent for an apartment he hasn't lived in since February. We are all on hold because of the court system. 

Meanwhile, the family decided to start cleaning out JP's home. Furniture, art work, and other items have been dispersed to family and close friends. All decisions decided upon by the family. As Peter and I are staying out of this until Peter is officially appointed in some capacity. The only thing we are doing is opening and closing doors for people to move things out of the unit. Since we live a few doors down from JP, we are involved whether we want to be or not. 

JP's townhouse is mostly cleaned out now. Except there are pieces of furniture and other items that need to be dumped or donated. So today, I met with one of the people in our complex to assess the cost of removing these items out and also doing a deep clean of the unit. It is quite unfortunate that this unit was infested with mice, and therefore, I spend little to no time in it because of the health risk. What captured my attention today was the simple fact that we all accumulate items, our world's possessions. Yet at the end of the day, these possessions get either taken or totally discarded by others. To me this is a sad commentary and a reminder that objects are just that...... they do not matter at the end of the day. As objects are dispensable and typically NOT cherished by others. 

Thursday, December 3, 2020

Thursday, December 3, 2020

Tonight's picture was taken in December of 2002. That day was our first snow fall of the year. It also happened to be a first for Mattie. As he was 8 months old and this white stuff captured his attention. So much so that he wanted to zoom on out in his "tot wheels" walker to see what was happening and explore what it meant to be snowing. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 14,102,568
• number of people who died from the virus: 275,729

To say I was a bit tired today would be an understatement. But I got up at 8am, which compared to the last two weeks, was late. I eased into the day, but still got a lot done like mailing the Foundation's mass mailing for our annual drive, picked up things in the grocery store, and walked Sunny on Roosevelt Island. I started to dig out of emails too. One of the emails that came my way, was a request to submit one of Mattie's paintings to serve on a cover of a psychological journal. The journal would highlight many of the research studies Mattie Miracle has funded. So it was truly a lovely request. But which photo? 

Clearly we have Mr. Sun! Which is a masterpiece. But Mattie had other pieces as well. Here are a few below!

Mattie's good friend, Zachary brought him back a toy subway train from London. Mattie was a big fan of trains. That day in the outpatient clinic, Mattie and his friend Maya (her initials are MEG) painted this creation together, using the train Zachary gave Mattie as a model! Notice also the tell tale Mattie sun!

Mattie spent weeks on this creation. We entitled it the "haunted house." 

Mattie's rainbow!

Mattie's tree! This painting was literally as tall as Mattie!

A valentine's painting for me! 

Mattie painted Tawa, a Native American god. One day, Mattie's art teacher came over to our home. While here she taught Mattie about Tawa and together they made this creation. Tawa is thought to have superhuman strength and stamina, and can ride on beams of light. I am sure this whole notion was right up Mattie's alley!

Mattie's abstract creation which is on display in our dining room. 

A paint splatter that reminds me of the sun. 

Wednesday, December 2, 2020

Wednesday, December 2, 2020

Tonight's picture was taken in December of 2007. Each December, we took Mattie to the US Botanical Gardens. What I loved about the Gardens were they were kept hot and humid. Almost like Florida on a hot day. In the middle of winter, it was like being transported into a warmer climate. The Gardens also decorated beautifully for the holidays, with trees, flowers, and even motorized trains. Of course Mattie loved the trains. While walking around the Gardens, we got a kick out of this hanging plant. Mattie stood underneath it and I joked with him that it looked like he had a huge head of hair. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 13,900,350
• number of people who died from the virus: 273,170

I got up this morning at 4am. As I can't start the day without a shower! Some people need coffee, I need a shower. Then I wanted to make sure I unloaded the dishwasher and made my mom breakfast. Seemed like a nice way to leave, as I know it is hard on my mom when I am not there to balance the daily grind. 

It was unheard of, I got from my parent's house to the actual airport gate (meaning through security) in 45 minutes. During pre-COVID times it can take 90 minutes negotiating through traffic to get to the airport, and then another 30 or more minutes to get through security. Once at the airport, it was decorated for Christmas and can you see the Christmas train up near the window arches? Mattie LOVED his Christmas train that would circulate around our tree. He would have appreciated this sighting today! In any case, I had to snap a photo! But despite sitting in a terminal waiting to board a plane with a mask on for HOURS, it was nice to be surrounded by Christmas lights and music. It actually made the mood lighter. 

If someone showed me this photo, I would immediately know it is LAX, the Los Angeles Airport. Not because of the control tower, but because of that funny dome liked structure to the right of the tower. That is the FAMOUS Theme Building, which once housed a restaurant. 

LAX is undergoing major expansion and modernization, including a new people-mover train scheduled to open in 2023, Los Angeles World Airports officials are looking for ways to bring a hotel into the core area that includes the Theme Building. Some say that the Theme was designed to symbolize a jet-age future, it looks like a big, white, concrete-and-steel spider. Since 1961, it has loomed over the airport as an icon of the Midcentury Modern style in Southern California. Beneath its twin parabolic arches, there’s a big, round, glass-walled dining room (now idle) that generations of confused travelers have mistaken for the airport’s traffic control tower. Above the restaurant area is an observation deck (also mostly idle). Airport officials are not suggesting the Theme Building become a hotel. But they’re wondering whether it might work as a restaurant or conference center with a hotel next door or nearby. That would be LAX’s first on-site lodging.

It was another beautiful day in LA! My view during take off. 

Look closely, do you see the faint Mattie Moon staring at me?

Because of my issues with motion and anxiety over flying, I now had to have a window seat. I need to control that window shade, because I find looking out helps both my stomach and my brain. Yet the one down fall is that I have to jump over my seat mate to get to the bathroom. My seat mate today was a pip. He came in smelling of marijuana. I am not a fan of this substance and I definitely am not a proponent of legalizing pot. If you disagree, then I suggest you spend some time living in a city where it is legalized, like DC. The smell is noxious and though you aren't supposed to smoke it in public, it is everywhere and is sickening. I am waiting for the evidence years from now that cites the mental health and physical consequences such as cancer from legalizing what once was a controlled substance. Needless to say, I felt like I smelled like him throughout the flight. 

Any case, at some point during the flight, I had to get my seat mate up so I could use the restroom. When I approached the restroom, a female flight attendant told me someone was in the bathroom and I had to go back to my seat and wait. That I couldn't wait near the airplane door. I literally said no! I know how this works, if I returned to my seat I would then be competing with others who also need to go. So she walked away from me, and I spoke with her male colleague. A much more pleasant and professional individual. I basically told him that his colleague is a "piece of work."

When I entered the plane this morning, I said hello to this same female flight attendant and commented that it was an early morning. Of which her retort was.... it did not bother her because she was on East coast time. A very self involved person, and clearly not good at greeting people and making small talk. So she already set me off. Then when she confronted me about waiting for the restroom, I had it. I told her male colleague that if she said one more thing to me, I was writing her up!

My view flying into DC. I was happy to at least see the sun, and not be greeted with DC grayness.

You know you have landed in DC!

Peter shared this photo with me today! Indie can't leave Peter alone, and was jumping all around him while he was working at his desk. 

Tuesday, December 1, 2020

Tuesday, December 1, 2020 -- Mattie died 583 weeks ago today.

Tonight's picture was taken in December of 2007. I personally think this photo is priceless! It captures the whimsy and eclectic nature of Mattie. Mattie had one foot in his own shoe and the other in Peter's shoe. Not to mention had Peter's baseball cap on his head as well as a Santa hat. Mind you it was December, so why not wear sunglasses inside!!!? I can't help but look at this photo even now and chuckle. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 13,709,452
• number of people who died from the virus: 270,481

Peter sent me this photo today. Why? Because from this scene I can tell that Sunny is UNHAPPY! Sunny is an emotional fellow and needs a lot of attention each and every day. When he feels his needs are NOT met, he starts picking up pillows from our couch with his mouth and throws them on the floor. Honestly when we first got Sunny, I would notice on occasion that Indie's cat pillows seemed to be on the floor. Pillows that typically were on our chairs. I was confused because these pillows couldn't have just fallen and Indie couldn't have moved them, so by the process of information, I deduced that it was Sunny! It is my understanding that Sunny is eagerly awaiting my arrival. 

Today was my last full day in Los Angeles. I fly home tomorrow, and return to LA on December 19. It has been a whirlwind of two weeks. However, you name it and I did it today...... from loads of laundry, cleaning, cooking, grocery shopping, pharmacy trip, brain games, physical therapy exercises, changed beds, helped my mom with paper work and the list goes on. My joke is that a need a mini camera on my head for people to see what my day looks like. It is truly hard to describe. My parents have a beautiful backyard, the weather has been glorious, and I don't have a even five minutes to sit outside and catch my breath. 

Signing off as I leave for the airport at 5:30am! 

Monday, November 30, 2020

Monday, November 30, 2020

Tonight's picture was taken in December of 2007. That day I went into Mattie's kindergarten class and read the book by Jan Brett, the Gingerbread Baby. It was a book given to me by Margaret, Mattie's preschool teacher. She loved it because the main character's name was Matti. After I read the story, I brought in home made gingerbread baby cookies, that the children got to decorate. I made royal icing and had all sorts of candies for the children to use to decorate their creation. I am so glad I never missed an opportunity to get involved and to be in the classroom to experience Mattie with his friends. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 13,525,899
• number of people who died from the virus: 267,888

Since the Governor has shut down in-person dining since November 25, I have been cooking at my parent's home. Given my dad's track record this year with NOT eating at home, I was worried that he wouldn't eat anything I cooked. So far, he has done well and appears to have an appetite. But I have been busy cooking in addition to doing a host of other tasks and chores, which is definitely not sustainable for my mom. The pace here is sickening.

As I was looking for a bowl to serve broccoli in this evening, I found this pretty blue bowl. Where did it come from? Peter! Peter is a potter, did you know that? He created this bowl when he was in high school. The bowl is the perfect shape, a brilliant color, and very durable! As my parents have had it for over two decades. 

Since we were cooped up all day today, my mom and I went outside for a five minute walk up the block and back. My parent's street is decorated for Christmas, and it was a magical highlight of our day. 

I am not sure how holiday lights are done in residential areas on the East coast. But in Los Angeles, there are professional companies that you can hire to set up a light display at your home. While I have been in LA for two weeks, I have seen many of these professionals working on the neighbors' houses!

A charming and colorful glow.

This house had lights everywhere! 

Somehow I love the two swans on the front lawn... but following the 12 days of Christmas song, I really wanted to see 7 swans a swimming! Where are the other 5?

Frosty!

The all white light look is beautiful and I believe it is trying to capture the feeling of snow and icicles. 

Can you see the twinkling stars?

My favorite! It was grand, yet elegant. My photo doesn't do justice to this incredible display. 

Love the stars!

Do you remember the TV Christmas Special, Rudolph the Red Nosed Reindeer? If so, then you know who is up in the tree  is the Abominable Snowman. I can't remember how many times we saw that movie with Mattie. 

In memory of the many times we saw this movie..............

Snowflakes in the trees! Today was close to 79 degrees, so no wonder they appreciate seeing snowflakes in the trees! 

Wonderful to see the trees aglow especially during the never ending lockdown. 

Sunday, November 29, 2020

Sunday, November 29, 2020

Tonight's picture was taken in December of 2008. Next to Mattie was the birthday girl, Charlotte. If you asked Mattie who Charlotte was, he'd tell you..... "my girlfriend." Mattie was quite certain he was going to marry Charlotte and also be her college roommate. They met each other in kindergarten and bonded the first day of school. I think they brought out the best in each other. When Mattie was diagnosed with cancer, Charlotte was the first friend to visit him in the hospital. When other parents and children stopped coming to visit as Mattie progressively got more ill, Charlotte kept on coming. Their connection was a true testament to the power of love and friendship. 

Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed with the virus: 13,374,162
• number of people who died from the virus: 266,838

What a difference a day makes. I had my mom on Tylenol and Advil around the clock yesterday. The Shingles vaccine hit her hard, but with a lot of rest and TLC, she bounced right back. In fact, my dad's caregiver was very worried about my mom yesterday. She thought my mom was very sick, but given that I am very familiar with the side effects of the Shingles shot, I knew how to help my mom. Naturally, we are all focused on my dad, but my mom's health is equally crucial. Because she is the important piece of the puzzle that enables them to live independently. My biggest fear is that my mom gets ill and she won't be able to care for my dad or herself. Given that I am 2,500 miles away, it isn't like I can get in a car and support them. I feel like we need a crisis management plan in place, if such a scenario plays out. So this weighs on my mind. 

This is a photo of my parent's street. They live on a cul de sac and it is a beautiful and peaceful tree lined street. Yesterday and today, we had my dad walk up this street for 8 minutes and walk back to the house for 8 minutes. My dad can't do this trip without an entourage, as his caregiver spots him and holds onto him with gait belt around his waist and I am trailing after them with a wheelchair. As my dad takes a five minute break between 8 minute walk stints. 

You would think while my dad's caregivers are here, that we can take a break! Forget it! When they are here, I am either managing them, working with them and my dad, or running around and doing chores that I can't do when they aren't with us. There is NO break what so ever. I am worn out, and much younger than my mom. So I worry about how sustainable this pace is for her. 

My dad's caregiver today said I missed my calling. She feels I should have been a medical doctor. She can't get over how I manage both of my parents and address all their needs, and also advocate for them with health care providers. All I know is I have had a lot of practice interfacing with the medical world, which maybe why I learned a thing or two. 

Since Thursday, I have been cooking all meals for my parents. Eating at home is not something they are accustomed to doing and I have been worried that my dad wouldn't eat. So far he has been doing very well with everything I have cooked. But I am worn out as balancing my dad's every needs and also cooking is challenging. When I am here, my mom and I eat at the same pace and we converse while eating. But when I am not here, for my mom its like eating alone. My dad focuses on his food, tunes out, and eats fast. It is hard to see the transformation in my dad and of course I know my mom has lost the partner she once knew. But here's the thing, without going out to lunch, I feel 100% trapped in the house. I can't leave, because my dad really doesn't have the energy to do much after his morning routine of brain exercises and physical therapy exercise. After his caregiver leaves, he sits in his recliner. Then we have an early dinner, and back to his chair he goes. He can't be left alone at home either. As he is fragile and needs help and support to go to the bathroom, and has many other demands that have to be met. So without the ability to go out for lunch, it is like never seeing the light of day. 

Meanwhile Sunny and Peter went out for a long walk today! I hear Sunny and Indie are very happy to be back in their own home.