Saturday, December 26, 2020

Saturday, December 26, 2020

Tonight's picture was taken in December of 2008. Mattie was in clinic and not feeling good. He had a high fever and was being admitted to the hospital. While waiting to go to the pediatric in-patient unit, he received a visit from Santa and Mrs. Claus. Thanks to Linda (his child life specialist), Santa knew exactly what to bring Mattie. Legos and toy cars!!! Mattie was so ill and depleted that his head was resting on the pillow in his lap. Yet Mattie gave it his best, lifted his head, smiled, and posed with Santa. I remember this moment in time and though it may look like a sweet photo, so so much was happening behind the scenes making this actually a very sad and heart breaking sight for any parent. 

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

• Number of people diagnosed with the virus: 18,943,541
• Number of people who died from the virus: 331,754

Yesterday morning, as my dad was heading out to the patio (always with supervision), his foot got caught under a portion of an area rug. If I did not stop him, he and his walker would have keeled over on the floor. So my mom and I discussed removing the area rug, getting it cleaned, wrapped up and stored in the garage storage closet. This morning, I was on a mission to find an oriental rug cleaner, so I started calling around. I landed up working with a lovely man named Daniel. Daniel showed up at the house today, we talked through the process, and he rolled up the rug and carted it out. One less accident waiting to happen. 

It was a typical day in paradise, starting at 6am. I am beyond tired from managing Mattie Miracle work, flying back and forth to Los Angeles, and then working hours upon hours here. Catching up on chores, doing non-stop grocery shopping, cooking, serving, and cleaning. 

This afternoon, I served the last of the Christmas dinner I cooked yesterday. Cooking a holiday dinner takes time and energy, and I really don't mind doing it if it is enjoyed. But today my dad told me turkey isn't his favorite, he wasn't wild about my sweet potato soufflé, and also did not like my three layered coconut cake. Certainly I can put this in perspective and I understand, but unfortunately I am human and when tired, I have trouble putting this into context. Needless to say, I am NOT investing time cooking wonderful meals if he doesn't like what I am cooking. That would be counter productive. 

On an aside, do you see the poinsettia tablecloth in the background of this photo? This tablecloth belonged to my grandmother and she used it when I was a child. It is hard to believe that this tablecloth is that old. It looks brand new and though it is bold, it is very festive, and it reminds me of my grandmother and how she made cooking and cleaning look so easy.

Friday, December 25, 2020

Friday, December 25, 2020

Tonight's picture was taken on Christmas of 2008. Though this photo looks cute and fun, this day was anything but that! Mattie was dealing with pain, depression, anxiety, and medical traumatic stress. These are things we did not always share with the outside world, but it was devastating to witness this and to feel powerless to change the situation. 

That afternoon, friends dropped off these cute Christmas items for Mattie. As you can see, Peter put on the red nose and hat and encouraged Mattie to do the same. It was a moment of laughter and lightness, which was greatly appreciated. 

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

• Number of people diagnosed with the virus: 18,756,360
• Number of people who died from the virus: 330,246

When I think about big holiday dinners, I am reminded of my maternal grandmother. By the time I was born, my grandmother was already living with my parents. As her husband died from colon cancer at an early age. 

My grandmother was a great cook and somehow how I had the where with all to observed what she was doing and at times she did instruct me. Which was an honor really because my grandmother did not like people in her kitchen. 

All I know is there is NO way I can cook a big Thanksgiving or Christmas dinner all in one day. Instead, I take on a dish a day, and I started on Monday. This is the only way that it is doable for me, on top of supporting all the other activities I do here. As usual, my day started at 6am. However, I gave my dad's caregiver the day off, so I took on getting him up, showered, dressed, breakfast, 4 loads of laundry, his 20 minute walk, cognitive exercises, and the list goes on. 

I set up a buffet in the kitchen and tried to make the dining room table festive. We are fortunate to have family friends who joined us today to celebrate Christmas. It made it festive, memorable, and it is good stimulation for my dad. 

When I was in Los Angeles in November, I decided to decorate the house for Christmas. I figured this would cheer up all our spirits, as there is something magical about seeing lights. Ironically, I refuse to decorate at all in my own home. But when I know it is for someone else, I will do it!

Fortunately I have Peter with me, and having my talented sous chef makes everything in the kitchen go MUCH more smoothly. As I find it challenging to do a big meal without an extra pair of competent hands. Since Peter was managing the cooking of the turkey, I was able to go for 4 mile walk with my mom. Along our journey, I saw Santa!

Another neighbor was giving out Meyers Lemons for Christmas!

Peter snapped a photo of me with my three layer coconut cake!

A photo of me with my mom!

My dad is enjoying his time with Peter! It was over 70 degrees today! An absolutely beautiful day and my dad was enjoying some time outside. In front of him is a golf course. Many of the players wished us a Merry Christmas, which was lovely!

While my dad and Peter were sitting outside, a big hawk flew into our tree!

Peter's turkey! It was perfectly cooked, which is a feat in my parent's oven. I learned from Thanksgiving that their oven is off by 15 or more degrees! Which is a lot when cooking a big bird or roast. 

Thursday, December 24, 2020

Thursday, December 24, 2020

Tonight's picture was taken in December of 2007. Mattie was 5 years old and he started a tradition of wearing his red antlers, a Christmas sweater, and pose with his Christmas train in the background. This photo was on the cover of our 2005 Christmas card. 

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

• Number of people diagnosed with the virus: 18,634,141
• Number of people who died from the virus: 328,849

Another busy day in "paradise." Things are challenging here as I start every morning at 6am. It is just non-stop chores, cooking, cleaning, laundry, and the list goes on. My dad and I have a routine, of brain games and walking up the block and back (which takes him about 20 minutes) right after breakfast. We then had his weekly visit from the in home nurse. Who is in my perspective a piece of work. Full of herself and everything has a way of coming back to her. 

Given that Peter was cooking dinner tonight, it freed me up to walk with my mom. We walked about four miles, but it was rainy and raw today. 

This evening, Peter and I baked the layers for a coconut layer cake. Which I will assemble tomorrow. Given my parent's small oven, I literally can only cook one thing at a time. It is very frustrating, not to mention that it doesn't keep a consistent temperature. So literally I never know what I am going to get as a result. 

Peter's dinner tonight! A roasted pork loin with carrots, butternut squash and potatoes. 

I cleaned the turkey tonight and it is bathing in a bath of lemon and orange juice in the refrigerator. 

Last night we went for a walk. Here are some of the fun sights we saw. I liked the Christmas tree images projected onto this house. 

This snowman has a light show going on which was adorable. I also loved the candy canes lining the sidewalk.

Frosty!

How do you like this candy cane arch?

We met the owner of this house last night. We told her we admired her display. She said that her husband put it all together himself. In California, there are companies that will decorate the whole outside of your house for you! I got to see some of these folks at work in November when I was here. 

Beautiful in white. 

My favorite! They even had Christmas music playing from a speaker. 

The whole driveway was lit up in red, green and white. It screams out Christmas!

I love the swans!

Peter posing with Frosty!

Wednesday, December 23, 2020

Wednesday, December 23, 2020

Tonight's picture was taken in December of 2006. Mattie was four years old and as you can see was posing by our tree with his Christmas train. Mattie LOVED this train. Santa was the conductor and the engine puffed out marshmallow fragrant smoke from its stack! The train around our tree was a family tradition. 

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

• Number of people diagnosed with the virus: 18,409,666
• Number of people who died from the virus: 325,539

Peter has been getting up at 4am since Monday in order to participate in work related calls. Though it was in the 60s today, it started quite foggy. I love seeing the foggy just sitting over the golf course. 

Meanwhile at 7:30am, I started making a caramelized onion sauce for pasta. I have to get a jump on cooking early because when my dad's caregiver comes at 8am, it is hard to focus on anything other than managing her and my dad's needs. 

I absolutely miss going out for daily lunches with my parents. It is the one incentive to get them out of the house and connecting with the outside world. Without this, I feel like I am living in the kitchen. With constant meal preparations, cleaning, and grocery shopping. 

I am trying to make my parent's house festive. It certainly brightens up our long days. This is one of my floral arrangements I put together. 

Their dining room table is ready for Christmas. In addition to cooking and cleaning, my day involved brain exercises with my dad, walking up the block with my dad (as we are trying to get him to walk greater amounts than just on the patio), interfacing with their car dealership who returned my parent's car from being serviced, chatting with the wound care specialist who came to assess my dad's back pressure sore, and follow up calls with insurance companies and other issues. It is like juggling twenty balls in the air at one time and I am definitely grateful Peter is here to also help me with Christmas dinner. I have concluded that having an extra pair of competent hands makes a huge difference with our preparations. 

Tuesday, December 22, 2020

Tuesday, December 22, 2020 -- Mattie died 586 weeks ago today. 

Tonight's picture was taken in December of 2005. Mattie was three years old and that day we took him to one of his favorite restaurants. In front of the restaurant was a little pond with fish and frogs. A place Mattie always wanted to visit at some point during our meal. That day Mattie posed in front of the pond with his beautiful red jacket. This photo was on the cover of our Christmas card in 2005.

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

• Number of people diagnosed with the virus: 18,217,159
• Number of people who died from the virus: 322,585

Look at this sighting outside my parent's house! A dog that looks a bit like Sunny! If Sunny were here he'd have a built in friend!

Though Peter is with us, he is working hard. After all he started a new job. Since most of the company is on the East coast, Peter has to get up at 4am here in order to participate in company calls. He is having very long days, on top of helping me. 

Today was another busy day. It started with taking my dad to see the urologist. My Dad was hospitalized in May because he needed kidney stone surgery. Unfortunately, he has one more stone in his left kidney. However, it is quite big and the doctor feels it is unlikely he will pass it. So we are taking a wait and see approach, with scanning every six months. I very much like his doctor and I feel he is competent and has a good demeanor with patients. 

While at the doctor's office, they did a sonogram of his abdomen to see if the kidney stone is impacting the health of the renal cortex (the outer layer of the kidney). Thankfully, his kidney is in good shape and we all felt relieved to get this good news. 

Since my parents like having their big meal mid-day, I land up starting to cook at 11:30am or noon. So I literally feel like I am in the kitchen all day. Cooking, serving, and cleaning are all full time jobs, but that is only a small component of everything that has to be done here. Laundry, home maintenance, paperwork, managing caregivers, actual caregiving, and the list goes on. I am absolutely worn out with this pace, and there is no relief in sight. 

Monday, December 21, 2020

Monday, December 21, 2020

Tonight's picture was taken in December of 2004. Mattie was two years old and at that point he understood the notion of Christmas, the fun of decorating for the season, and of course my need to take photos! This photo was featured on the front of our family Christmas card that year. 

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

• Number of people diagnosed with the virus: 18,017,492
• Number of people who died from the virus: 319,270

I debated back and forth whether my dad should go for an x-ray today and keep his urology appointment tomorrow. I decided based on the fact that my dad was hospitalized in May for a kidney stone lodged in his ureter, that it was important to receive follow up care. Which included an x-ray today to see if his remaining stone has migrated and worse whether he has produced more stones in six months. 

We took my dad to a radiology center that is about two blocks from their home. It is a lovely facility and professionally staffed. However, today I wanted to be able to talk to a radiologist after the x-ray to find out the results of the test. Turns out in California, these testing centers are not allowed to share results with patients. The results must come from the patient's doctor. In any case, that did not stop me from demanding results. So after talking to the center's manager, she agreed to send me the radiologist's report by email. By the way, I don't care what coast you are on, patient's have rights, and therefore we should always have access to our information. I learned this through Mattie's journey, and I try to share this message with every one I know. 

I learned today that it doesn't matter how old we are, some emotional things stay with us. Today I was transported back to 1984, when my family moved from NY to Los Angeles. I was 14 years old at the time, and it was a hard age to move to California. I had a wonderful friendship network in NY, I had won a dance scholarship to study dance at the college level (while I was still in high school), and I felt like I was finding myself. But I was a child, and wasn't given the choice about moving. This lack of control stays with me, as does the fact that we lost bonds and connections with friends and family. Geographic distance is the fastest way to sever relationships. One of the painful lessons I learned. 

When I moved to LA, I felt like people here never accepted me. I sounded different and I certainly wasn't blond and blue eyed. Back in the 80s, the "valley girl" was not only a concept, it was a reality in LA. I did not fit the mold and truly wasn't happy living here for three years. Which is why I went to college back in NY, and never moved back to California again. 

Tonight over dinner, we were talking about moving. A topic I dislike on all levels. You would think with my experience with moving, that it would be an easy topic to discuss and easy for me to do. On the contrary, the thought of moving stymies me. In a way this is the first time I really reflected on our LA move with my parents, and I told them that I truly don't get why they moved in the first place. I understand it was for a job, but I personally feel there are so many factors that need to be considered and valued before moving a family 2,500 miles away. This caught my dad off guard and he felt that I needed to rethink what I was saying because it was hurtful and very self focused. Of course this is the whole notion of sharing feelings no? It involves sharing my reflections, thoughts and emotions. 

I dropped the subject, but needless to say when people tell me that I had to have these life challenges in order to grow, gain insights, mature, and become the person I am today......... my reaction is MAYBE! I would like to think that I would be the person I am today, without moving 2,500 miles away, without living on a separate coast from my parents, and of course without having a child diagnosed with cancer. 

Sunday, December 20, 2020

Sunday, December 20, 2020

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and I was desperate to get a photo of him for the front of our Christmas card. The only way we were able to achieve this goal, was to take Mattie to Home Depot, put him in a shopping cart, and take him down the holiday display aisle. Mattie was intrigued by all the lights and decorations that he was mesmerized, giving us enough time to take some photos! I am sure people around us thought we were hysterical and were making quite the scene just to capture a photo.

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

• Number of people diagnosed with the virus: 17,840,000
• Number of people who died from the virus: 317,667

Peter and I had a busy day. We started at 6am. We did every thing from cleaning, cooking, grocery shopping, chores, washed the car, and the list goes on. In the afternoon, my mom and I took a three mile walk around her neighborhood. I had a good time looking at all the Christmas decorations. Which I am sharing with you tonight. 

This house laid out fake snow, covered bushes with this snow, and decorated the entire yard and trees. It is particularly funny because it was close to 80 degrees today. The only snow they will see is the fake stuff. 

A close up of the Santa in the tree. 

I loved all the wreaths I saw on fences and gates. 

Ornaments hanging from trees. 

Miss Indie's California cousin. While my mom and I were walking, we came upon two cats. Their owner was outside and he explained that this cat was rescued from Thailand. A very friendly girl, she came right up to me. 

I love the ornaments outside!

Though this is a lovely looking house, believe it or not, it is owned by the movie studios. No one lives here! We know this because this house was about a block away from the house I lived in when I was a teenager. 

More ornaments. 

This one is over the top! I suppose if you are a Tim Burton fan, you will love this. To me it is creepy! Santa is on the left. His hands are tied over his head as he hangs from the tree. Then there are these creepy ghoulish figures dressed in black standing on a tree limb. I think this house is a cry for help! 

I liked the Christmas llama. 

I love this one! Santa resting on the moon!

I usually do not like inflatables, but this Santa and reindeer caught my attention. 

I can't wait to see this house at night. It has it all.... a full choir of children, nutcrackers, Santa and all his reindeer, and the list goes on. Apparently this house is called Lilley Hall. It is a 1927 Tudor Revival named for musical composer/arranger/director Joseph J. Lilley who resided in the home from 1954-1971.

I found this photo on-line of Lilley Hall. But I can't wait to see it for myself.