A Remembrance Video of Mattie

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to me that you take the time to write and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful and help support me through very challenging times. I am forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically have stopped writing on September 9, 2010. However, like my journey with grief there is so much that still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with me, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki



September 9, 2020

Wednesday, September 9, 2020

Wednesday, September 9, 2020

Tonight's picture was taken in September of 2008. That day, one of my friends came to visit us in the hospital. With her, she brought a block of clay, some tools, and goggles. Mattie had to excavate  through the clay to reveal plastic dinosaur bones. These bones then connected together, to form a 3-D dinosaur! Mattie worked on this block of clay for hours. It was the perfect activity for him. As it did not involve gross motor movement, only fine manipulation. Despite all of Mattie's surgeries, his fine motor movement was excellent. 


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

  • number of people diagnosed with the virus: 6,351,623
  • number of people who died from the virus: 190,478


Given that yesterday was the 11th anniversary of Mattie's death, we both feel a bit shell shocked today. It is hard to know how to prepare for these milestone moments, and most definitely I have learned over this past decade to have no expectations for others in our life. With time, people forget and it is natural. It is also natural to think that parents heal and the loss isn't as painful as time goes by. 

With that said, I am thankful to have friends who texted, emailed, left messages on Facebook, donated to the Foundation and reached out to us. It makes a huge difference on a hard day, which unfortunately doesn't last for only 24 hours. The day starts another year without Mattie and all that this signifies. I wanted to highlight two messages I received yesterday. One was a poem written by a colleague and long time friend. Nancy has a special way of capturing the sentiments and thoughts associated with an emotional day. The other message is from a child life professional I have had the opportunity of getting to know since 2018. Ironically I haven't worked closely with this professional, but apparently she has followed our story and is touched by Mattie's memory. The beauty of Mattie!


Remembering You

by Nancy Heller Moskowitz


Missed each and every day, Sept. 8th. is etched in our bodies

Achievements through the Foundation continue to remind everyone of your life

Today we visited your Oak Tree, proud and sturdy

The acorns and lady bugs were abundant, nature is your signature, your gift

I feel your presence as does Daddy, loving us back as we cherish you

Each year brings a new challenge, our son forever!


The second message came out of the blue, as I only periodically communicate with Jessica. Jessica wanted me to know about an art exhibit she attended in 2018. At the exhibit she participated by adding a wooden note to the display that reflected upon Mattie's life and his impact on her. Totally stunning for me to hear this, since we don't know each other well, nor has she ever met Mattie. However, I have had the opportunity to watch Jessica interacting with patients and she is very gifted. Not only capable, but she taught herself the Spanish language, and is very at ease working with children in English or Spanish. Her energy is always positive, consistent, and compassionate. The perfect combination for family members when stuck living inside a hospital. 

This is a photo of the art exhibit entitled, David Best's temple. The hand crafted temple was a glowing sanctuary, offering visitors a quiet place to reflect and pay tribute to lost loved ones. This site-specific installation covered the walls with intricately carved raw wood panels that led to an ornate altar. Wooden placards were provided for visitors to write a personal message and leave within the installation. I am so sorry I missed this exhibit, but was thrilled to hear Jessica went, and not only went but placed a wooden card in memory of Mattie at the exhibit. 

A short video about the exhibit: https://americanart.si.edu/exhibitions/david-bests-temple

Here is a photo of the note Jessica inserted into the display back in 2018. I was deeply moved by her entire message to me, but this sentence stays with me........
 "what I didn’t realize is how much I could think of or care about a child who I never even got to meet." 


I did not know until now that Jessica wrote this wooden note, or that Mattie's life has touched her in this way. So this was a very, very special gift to receive on the 11th anniversary of Mattie's death. The gifts that are unsolicited are always the best. But what Jessica's email made me see, is that I must be doing a good job at keeping Mattie's life and memory alive. Otherwise, how would anyone, who hasn't met him, know about his amazing life and legacy. 

September 8, 2020

Tuesday, September 8, 2020

Tuesday, September 8, 2020 -- Mattie died 571 weeks ago today. 

Today is the 11th anniversary of Mattie's death.

Tonight's picture was taken in April of 2002. He was only days old. Ironically I feel that when Mattie was born, he looked more like Peter. This quickly changed by the time Mattie became a toddler. At that point there was absolutely NO mistaking who his mom was. 





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

  • number of people diagnosed with the virus: 6,321,950
  • number of people who died from the virus: 189,538


We visited Mattie's memorial tree today at school! This white swamp oak looks strong, steady, and beautiful. This is memorial tree #4, as the first three had issues. The School's arborist once told me that..... Mattie wanted an oak and was holding out until he got one. 

Mattie loved oak trees. He collected acorns every year and gave them to SPECIAL people in his life. So I know Mattie would have been happy seeing all the acorns on his tree today. Not to mention lady bugs. The tree was filled with them. I view this as a sign from Mattie to me. 






The acorns with their cute caps! Ladybugs all over the tree!


We hung many butterfly ornaments today and changed all the ribbons around each of the trees in our memorial Mattie grove.  While on campus, we chatted with Mattie's school counselor and all the grounds crew who have gotten to know us over the years! They LOOK OUT for Mattie's tree! We are grateful to have this oak tree to turn to every September 8th.








It is hard to believe that today marks the 11th anniversary of Mattie's death. One may think..... wow that is a long time ago, and therefore we must have "gotten over" this loss. Those of you who know me, know I despite certain words like "moving on," "getting over," "the new normal," "every thing happens for a reason," and "he's in a better place." In fact, I strongly dislike most platitudes.

The only thing time does for bereaved parents is it teaches us how to survive the impossible. As grief and loss will always be with us, but how we manage and cope with this life-long journey, our thoughts and feelings, and sometimes the insensitive things people say to us are all we have control over. 

If Mattie were alive today, he would be going to college. I realize going to college now looks different because of the Coronavirus. However, I would take different over, a non-existent child any day. 

Eleven years after Mattie's death, and Peter and I still flounder over how to spend this day, and of course with each year that passes, it takes more energy and concentration to remember the nuances of our son. Something I don't wish upon any parent.  

Below is a message I wrote and posted at Mattie's celebration of life service in 2009. The message discusses the day Mattie was born, a story he loved to hear. He particularly loved hearing this story during challenging and stressful times, such as on August 5th, when we learned Mattie's cancer spread throughout his body, making his prognosis terminal. 

Who was Mattie? Mattie was a force. He was bold, humorous, bright, strong willed, loved animals, was king of the Legos, was fascinated by anything with wheels, was our "little engineer" (at the age of two, he could disassemble and re-assemble his hotwheel cars), and as Peter often said, he was a "mama lover." He is dearly missed and forever loved. He leaves a hole in our hearts and our lives that can never be filled. 

For all our family, friends, and Mattie Miracle supporters out there..... THANK YOU for keeping Mattie's memory alive. 

------------------------------------------------------

My Dearest Mattie,

It is said that parents love their children right from the moment they are born. However, in your case, our love for you began as soon as we learned we were going to have a baby. In fact, right after seeing your sonogram picture, we felt like proud parents. We posted those pictures everywhere. We shared these pictures with practically anyone who would listen or showed interest, and each September when I taught prenatal development in my undergraduate human development class, out would come your sonogram pictures to illustrate my points. Even my students got a sneak peek at our baby, a baby who would have a profound and meaningful impact on not just his parents but also every community he touched. Daddy and I did not only love you, we FELL IN LOVE with you, and that love grew stronger with each day. Your energy, spirit, love for life, intellectual challenges, sense of humor, and loyalty to your friends and family were only some of the wonderful traits we always admired in you.

This video is a tribute to you and your wonderful, yet short life. It seems fitting as we celebrate you, and say good-bye to your physical presence that I share the story about how you entered the world. The story of your birth had to be one of your most favorite stories to hear, and I found during times when you were reflective, overly tired, or in need of hugs and tenderness, the request for this story arose. In fact, I remember on August 5th, the day we found out that your cancer metastasized everywhere, you and I were sitting in the hospital’s rose garden, and you requested the story. It was almost as if you knew this was going to be a bad day, so in essence we might as well brace ourselves, cuddle, and prepare for this together.

Here is the story I always shared with you. A story Daddy and I will never forget. On April 2, 2002, at 11pm, I decided to head to bed. I was anxiously awaiting your birth, and as your due date approached, I couldn’t help but wonder, when will “the baby” be coming? I was restless and uncomfortable, so while in bed, I began to watch television. I was having trouble concentrating on what I was hearing, mainly because you were kicking up a storm inside of me. At which point, the kicking became so intense, that I literally felt something pop. You clearly wanted OUT, and you were going to kick your way into the world on your terms. Naturally after feeling this pop, I looked down at my tummy, and when I jumped out of bed, I realized my water had broken. This only happens to 25% of moms, and in retrospect, I should have guessed that this was just the beginning of how different our lives were going to be together. I immediately called the doctor and told her what happened. She asked if I was in pain, which I wasn’t, and she instead told me to get a good night’s rest, because my baby was going to be born the following day. Well I can assure you after hearing this news, sleeping was the farthest thing from our minds.

So on April 3, 2002, Daddy and I headed to the hospital and we were admitted to the maternity unit at 8am. The labor process began, but it was a VERY slow process for me, and at times as you moved inside my tummy, Daddy could see your head pushing against my backbone. Needless to say Dr. Mike, the anesthesiologist, became my favorite doctor that day. The hours kept rolling by, and still there was NO sign of our baby! I was getting weaker, I developed an 102 fever, and by 11pm I really had no energy to give birth to you. In addition, to how I was feeling, your oxygen supply was getting cut off, and your chin was positioned in such a way that would make the birthing process almost impossible. So it was at that point that the doctor recommended an emergency c-section. Things began to happen very quickly around me. I was signing paperwork for surgery and Daddy was being transformed by putting on a bunny suit so he could enter the operating room.

I had never been in an operating room before in my life, but I really wasn’t concerned at that point about myself. I was solely focused upon you. I was wide-awake for the c-section, but unable to see the process, which as you know, was probably a good thing. Daddy on the other hand found the whole thing very exciting, and began to videotape and take pictures of the surgery. Literally a team of people surrounded me and I will never forget Dr. Mike, the anesthesiologist who sat by my side, and talked with me and did whatever he could to keep me pain free.

When you have a c-section, your arms are strapped to the operating table, so I couldn’t move, and directly over my head was what appeared to be a rope with a clamp that was holding open my abdominal cavity. Normally by this point I would have passed out, but when it came to you, I developed strength I never knew I had. As the doctor began cutting, and finally got to you, the first thing she said was, “what is this?” That is NOT what you typically hope to hear when having a c-section. The doctor let me know that I had a grapefruit sized tumor on my bladder, and my immediate thought was, did this affect the baby? The next thing I knew, I felt her tugging, and I heard the loudest cry ever. Now here is the part of the story that I know was always your FAVORITE! I would always try to replicate the sound I heard coming from you that day, a sound that will always remain in a parent’s ear. It was a very large WAAHHH! WAAHHH! At which point the doctor told us two things: first, that you were one of the most beautiful babies she had ever seen, and second, that you had quite a set of lungs on you! I concurred with both statements.

The doctor then brought you over to me, and she felt that I needed to be the first person to touch you. So despite my arms strapped to the table, my right hand miraculously reached out and grabbed your tiny, soft, and cute foot. It was a moment I will always cherish, a moment in which I will never forget, and a moment I am so happy you too enjoyed hearing about. Each time I retold the story I felt as if it further bonded us together, and I always enjoyed hearing your comments, thoughts, and reactions to your story.

Seeing you made Daddy very happy! Though he was worried about me, since after the c-section, I had to have bladder surgery to remove the tumor, we both agreed that Daddy should stay with you and accompany you to the nursery. It is there that Daddy got to see you cleaned up, he learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. Within an instant, Daddy became one of your fiercest protectors, and he cared for you for five days straight while we were in the hospital together. In fact, Daddy is the first person who changed your diaper, and though those were five very challenging days in the hospital, they were days that helped us form our strong family ties. Ties that were imperative and that we relied on for seven years of your life!

Your presence is so greatly missed. Nothing seems the same, is the same, looks, feels, or tastes the same without you in our lives. May you always know that Mommy and Daddy love you, cherish you, and that feeling will remain with us forever and always. Good-bye my Mooshi Moo angel and goodbye Daddy’s best buddy. With love from Una Moon and Daddy!

September 7, 2020

Monday, September 7, 2020

Monday, September 7, 2020

Tonight's picture was taken in September of 2008. Mattie was two months into treatment and was home between infusions. That day, Mattie's very close preschool buddy, Zachary, came over. Zachary brought Mattie this Indiana Jones hat. As you can see they were having a good time together acting out their own adventures  in our living room. Zachary and Mattie were inseparable in preschool. They met each other on the first day of school back in 2005, and practically every day after school, they either played in the school's playground or had a play date. Their play involved running around, climbing things, and so forth. However, once Mattie developed bone cancer, his ability to do the physical things he once did ended. That could have impacted their friendship, but it didn't. Zachary found a way to play with Mattie in a new way, and frankly I learned a lot about friendship from watching these two boys together. 


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

  • number of people diagnoses with the virus: 6,292,206
  • number of people who died from the virus: 189,095


This is the photo of my dad's leg today. Though it looks red and inflamed, I can see the improvement. It gives me confidence that we are moving in the right direction. Thankfully my parents sought out a second opinion about this on Friday before the long weekend. 
This morning, Peter suggested we have breakfast outside on our balcony. It was the perfect weather day, so we did it. Sunny was thrilled by the prospect, as he got a scrambled egg and even tried a piece of an English muffin with jam that Peter's mom made. Sunny loved it!
It is hard to believe that tomorrow will be the 11th anniversary of Mattie's death. Our goal is to visit Mattie's trees tomorrow and to hang butterfly ornaments on them. My mom sent me 20 butterflies two years ago, and I just got to converting them into ornaments today!
Meanwhile, I snapped some photographs of our neighborhood. We live in an area that is supported by the George Washington University, the State Department and the Kennedy Center. Yet the amount of graffiti and homelessness is running rampant. Tents are everywhere as our city gives out tents to the homeless. I think they should use the money they spend on tents and instead invest it into programs that actually work. As the filth, garbage, and hygiene issues around us are sickening. 

This is our neighborhood CVS. If you look to the left, you will see a homeless man sleeping out front. The homeless are in front of this store throughout the day. 
This is our park near where we live. It is filled with tents. We are absolutely surrounded and residents in the city have no recourse or options. 

For Peter and I, this is a very sad week. As we face another year without Mattie. Yet we are further influenced by our surroundings. Which are equally sad and depressed. 


September 6, 2020

Sunday, September 6, 2020

Sunday, September 6, 2020

Tonight's picture was taken in September of 2008. My mother in law, sent Mattie this foam puzzle of the map of the world. Mattie loved puzzles and as soon as he opened the package, he started to assemble the puzzle. After the puzzle was fully constructed, Mattie sat on it, because the foam was comfortable. I got a kick out of this photo and entitled it, "Mattie sitting on top of the world." 


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

  • number of people diagnosed with the virus: 6,268,757
  • number of people who died from the virus: 188,791


Peter has been under enormous amounts of stress. Taking any one of the issues he faces could make anyone anxious, but altogether it is like the perfect storm. As Peter is dealing with a job search (during the horrors of COVID-19), he is managing the estate and paperwork of our deceased neighbor as well as dealing with the complex dynamics and personalities of our neighbor's family and friends, he lives with daily concerns about our personal safety living in Washington, DC and of course this Tuesday is the 11th anniversary of Mattie's death. 

This morning I found that Peter couldn't sit still and seemed very agitated. Not to mention nauseous. Symptoms I know all too well! Not because of Peter, but because of myself. Since Mattie's death, I have dealt with anxiety and panic attacks. So much so that I thought I was having heart issues and my doctor sent me to a cardiologist. The only thing the cardiologist did for me was cause more anxiety, at which point, I ripped off all heart monitors and stopped the 24 hour heart test. I live with anxiety, therefore, I knew what Peter was experiencing today. I think having someone normalize your intense feelings and thoughts helps. 

I also know that the best medicine for anxiety with nausea (besides my good friend Zofran) is movement. Sitting still and being confined at home doesn't work. Or it doesn't work for me, nor does it work for Peter. So I told Peter to go outside and walk. He walked two miles and he came back and we sat outside with Sunny for a while. Our brains can get overloaded, and stress can manifest in a physical way. It is said that the stress you feel from the havoc in your brain sends signals throughout your whole body, eventually reaching your stomach. Anxiety with nausea is real, and for anyone with severe anxiety, they know just how frustrating it can be to add sickness to emotional distress. While nausea is more common than getting sick, it's a sign your body is under stress. While not everyone experiences anxiety on a regular basis, when it gets severe enough, the body is programmed to make you feel nauseous. 

Mid-day, we took Sunny for a walk at Turkey Run park. Sunny honed into a sound! When we looked, it was this cute chipmunk. Mattie absolutely LOVED chipmunks and he even wrote about them in kindergarten. Mattie called them "chippys."

Sunny staring at the chipmunk!
The beauty of Turkey Run. I love the greenery, peacefulness, and little to no people. 
I stopped Peter and Sunny from stepping on this toad! Do you see him?
This evening, we have been invited over to a friend's house. I think this will be a positive diversion for Peter. To the dinner, we are bringing a homemade Blueberry Pie. When Peter was in Boston, he went blueberry picking with him parents. So when I returned home from Los Angeles, I found several bags of blueberries in my freezer.  


I am also bringing a Corn and Tomato Salad. This has to be one of my favorite salads to make in the summer months. It is very easy to do and very tasty! It goes with just about any kind of meat or fish. 

 

September 5, 2020

Saturday, September 5, 2020

Saturday, September 5, 2020

Tonight's picture was taken in September of 2008. Mattie was two months into treatment. That day we were home and a friend dropped off this dancing yellow bird. Do you see it on top of the furniture? Literally we pressed a button and music came on and the bird danced. Mattie and Peter were giving me their bird dancing impression. Naturally I had to capture the moment, and I am so glad I did! Moments in time are fleeting and I am happy I never missed the opportunity to snap a photo. As all these photos are now priceless to us. 




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

  • Number of people diagnosed with the virus: 6,224,789
  • Number of people who died from the virus: 188,098


I am keeping a close watch on my dad's leg. Mind you of course that this is from 2,500 miles away. But thanks to technology, receiving photos is easy. I alerted my dad's caregiver that I want photos daily because its important to see if the new treatment is working. 

Though this doesn't look great, there are no more blisters and oozing going on. So things are drying up. I am hoping within a few days the redness subsides. 

Though feeling very tired, we did take a two mile walk with Sunny and I even went grocery shopping. Somehow life is filled with chores, regardless of where you are. Yet I learned when Mattie had cancer and we were trapped inside the hospital, that doing the daily routine (including chores) is a blessing. It means you are well enough and have the freedom to do this. 

 

September 4, 2020

Friday, September 4, 2020

Friday, September 4, 2020

Tonight's picture was taken in September of 2008. Mattie was in his second month of treatment. I think this gives you some idea how small the room was for THREE people. Nonetheless, Mattie loved his cardboard boxes. The boxes served as great diversions. As he could decorate, build, and play with them. Back then, you wouldn't believe what a God sent a box could be. Peter and I needed every tool in our toolbox to keep Mattie comfortable, entertained, engaged, and not shutting down emotionally. 




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

  • number of people diagnosed with the virus: 6,187,336
  • number of people who died from the virus: 187,464

Every day, I am under some sort of delusion that it will be an easier day! FORGET IT! Bright and early I received a text message from my dad's physical therapist. This PT is an incredible person. Medicare has approved of NO MORE visits, so we are paying Jon out of pocket. Yet Jon is giving us a very reduced rate! However, in my opinion Jon is worth his way in gold. He lives about five minutes from where my parents are and he says he will respond to them 24/7! Who on earth does that these days? An incredibly caring professional! 

Jon wanted me to know that he has been reflecting on my dad's leg and felt he needed to say something to me. He said that the leg was looking awful yesterday during their PT session and that my dad kept wiping his leg from the oozing blisters running down his leg.  

After I got Jon's text message, I reached out to my dad's caregiver and told her I wanted her to take a photo of my dad's leg today. I also asked her whether the leg was improving. She indicated that it was healing. I bought that until I saw the photo! Thank goodness I asked for a photo!

So this was Tuesday's, September 1, leg photo! I did not like the look of the infected insect bite then, but look at today's!
This is the leg today (September 4). Does this look like an improvement to you? I saw this photo and lost it. I then contacted the home health agency to see if the wound care professional could come out today! Of course she couldn't with it being Labor Day weekend. My dad's visiting nurse was also out of town for the weekend. 

So then what? I called my mom, who said she made a dermatology appointment for my dad on Tuesday of next week. I told her that would be too long to wait, especially if this infection spreads! We want to avoid a fever and it moving into his bloodstream. My mom and today's caregiver weren't as alarmed as I was, until I sent them both Tuesday's leg photo! You can't deny comparing the photos that things are not improving but instead getting worse.

I am quite sure I drove my mom nuts today. Not my intention, as I reminded her, I am trying to prevent another crisis, emergency, and hospitalization. Thankfully my dad saw the dermatologist today and he now has him on oral antibiotics, topical hydrocortisone cream and a soak with something called Domoboro medicated powder. The powder mixed with water is supposed to provide relief from itching caused by oak, sumac, poison ivy, mosquito and insect bites, redness and irritation.

Meanwhile, a family friend who lives near my parents told me that Los Angeles is expecting rolling black outs because California has to conserve energy, especially with 110 degree heat. Really NOT what I wanted to hear, as electricity is important to all of us, but especially for older adults. Our friend assured me he had a back up generator and would come install it if they lost power. Another angel! Given that my mom was on overload, I text messaged this angel to see if he would pick up all my dad's scripts. Which he is! I am thankful to have this friend, because he can be there on the ground when I can't. 

September 3, 2020

Thursday, September 3, 2020

Thursday, September 3, 2020

Tonight's picture was taken in September of 2008. Mattie was in his second month of receiving chemotherapy. Even early on, Mattie had moments where he did not want to see, hear, or be around people. Which wasn't always possible in a clinic or hospital. Which was why, in this particular case, Mattie constructed a home out of a cardboard box. Notice that Mattie was sitting in the box so you couldn't see his face. Yet his IV line was streaming outside the box. 




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

  • Number of people diagnosed with the virus: 6,141,580
  • Number of people who died from the virus: 186,467

 

I started my day by going to the dentist. My 6th month dental cleaning was scheduled in March. Due to COVID it was cancelled. I frankly forgot all about this because while COVID was happening I had to have three root canals and therefore three crowns put over those teeth. I feel like I have seen the endodontist and the dentist way too often. Therefore, when the hygienist said I hadn't gotten my teeth cleaned in a year, I just looked at her. As if that was my decision. They were the ones who canceled my appointment in March. So I don't deem that as ME FORGETTING an appointment. Which is how she initially made me feel. 

I have lived in Washington, DC for over twenty years. However, this is the first time I do not feel comfortable walking around in my own neighborhood. Businesses and stores are boarded up because of violence and looting. Therefore, I had Peter drive me to and from the dentist office today. 

After that visit, we took Sunny for a walk on Roosevelt Island. We were greeted by a female deer. Do you see her?
She was very brave and had no problem with us getting within feet of her. What she did not like was Sunny. Sunny was tugging and wanted to chase the deer, which of course did not happen. Sunny however  was sighing with frustration over our decision. 
This is the third lunch Peter and I had out this week. It was lovely being by the Potomac River. However, I remain very tired and very strung out. It is hard to stabilize because the caregiving issues I left in Los Angeles are not over. The situation isn't going to resolve or improve. My only hope is that all the help Peter and I provided this summer will keep my dad's health situation stable. 


September 2, 2020

Wednesday, September 2, 2020

Wednesday, September 2, 2020

Tonight's picture was taken in September of 2008. Mattie started treatment at Georgetown Hospital in August of 2008. The staff had known Mattie for about a month. Yet they figured out early on that Mattie loved packing boxes. They saved whatever boxes came in, because they knew he would want to build and create with them. As you can see, that day he picked up three more boxes at the hospital. Mattie would create with them in the outpatient clinic or in his hospital room. Needless to say our hospital room was about the size of a small walk-in closet. Besides housing the three of us, it also had many of Mattie's art projects all around the room. It was always full house.


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

  • number of people diagnosed with the virus: 6,094,562
  • number of people who died from the virus: 184,914


I maybe home in Washington, DC but I still feel like I am living in "paradise." For those of you who haven't been following along, "paradise," is my facetious name for where my parent's live. I have come home extremely worn out and very agitated. It is hard working 14 + hour days for a month. Though it is hard with that day in and day out pace, it is ten times harder trying to manage things from Washington, DC.

Today, I was trying to coordinate my dad's care for his leg. This horror show on his leg is an infected insect bite. He has been scratching it non-stop and has made it much much worse. We have tried all the usual things from neosporin, cortizone cream, to benedryl. Nothing worked, but instead it is spreading, oozing, and still itching. I was afraid my dad would get cellulitis, a bacterial infection of the skin. Cellulitis can spread rapidly. Affected skin appears swollen and red and may be hot and tender. Without treatment with an antibiotic, cellulitis can be life-threatening.

I sent this photo to his doctor and then wrote to my dad's visiting nurse and his wound care specialist. Everyone but the doctor has been great and very professional about responding. I arranged for the wound care specialist to come to the house today to examine the wound and report back to the doctor. I made it clear, I wanted my dad started on antibiotics. It was all arranged. Then I received a call several hours later. The wound care specialist was at the house, but NO ONE was answering the front door! Why? Because my mom created her own plan and took my dad to the doctor instead. She did not text message the wound care specialist. I of course had to apologize profusely to the wound care specialist, as we are wasting her time driving around town. It is very frustrating for me. If you want my help then we have to be on the same page. 

Meanwhile, I arrived in Los Angeles on August 9th. On August 10th, I called Best Buy to request that someone come to fix my parent's dryer. They have a service plan through Best Buy. Best Buy contracts their service calls out to local companies. So on August 11th, was my first interface with Ashton Electronics based in Culver City, CA. The tech examined the machine and said that the dryer wasn't functioning because it needed new parts. Mind you this machine is only two years old. But that is another conversation. Any case, the tech said that he had to order the parts but that Ashton Electronics would contact me when they were received. Needless to say, a week went by. Finally I contacted them again on August 21. At that point, their administrator (Amy) told me that she would schedule the parts to be installed into the machine on August 28. Needless to say, August 28, came and went, and no repair person showed up. So I called Ashton Electronics again. The administrator had some sort of excuse as to why the repair never happened. Any case, she assured me that a repair person would be at my parent's house TODAY before noon. I remember this conversation specifically because I said given my dad's health concerns, morning hours were better for visits. That we also need the washer and dryer to work because of all the laundry we do. She said she understood and that we would be the first customer of the day. My dad's caregiver witnessed this call, and therefore she had it in her calendar that the repair person was coming this morning. 

Needless to say, the repair person did not show up again (0 for 2). My mom tried dealing with the administrator, Amy, who said that there was NO appointment ever scheduled for today. My mom was so annoyed with Amy, that she asked me to deal with it. So I called Amy myself. Do you know she hung up on me!!! I called her right back. She said I was yelling at her and that she wouldn't be talked to like this! Someone has to shake her up because she runs a very unprofessional business. I told her she could pretend there was no appointment today with my parents, but I don't have dementia and I know what we agreed to. She said we never had this conversation! So what does that mean, I am making it up? I am delusional? If I was not a mentally stable person, I would personally visit Amy and throttle her. 

So now I am on the phone for over an hour with Best Buy, trying to talk to the CORRECT person. They need feedback about their contractor, Ashton Electronics, and more importantly, we need to be assigned a company who can get the job done when they say they will. I feel like screaming! There is never a peaceful moment. 

The highlight of my day, is Peter and I went out to lunch by the Potomac River today. But even at lunch, I was on the phone with my dad's health care company!


September 1, 2020

Tuesday, September 1, 2020

Tuesday, September 1, 2020 -- Mattie died 570 weeks ago today. 

Tonight's picture was taken in September of 2008. Mattie was in his second month of chemotherapy and was home between treatments. While home, he got a visit from JJ, our resident Jack Russell Terrier, and our neighbor JP. It is hard to believe that both Mattie and JP are both dead and JJ was relocated to South Carolina. Mattie loved animals and always wanted a dog. So we appreciated all friends who visited Mattie and brought their dog, especially when Mattie was in cancer treatment. 


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

  • number of people diagnosed with the virus: 6,064,409
  • number of people who died from the virus: 184,320


For those of you who have been following along, you know that on August 21, I contacted American Airlines. I contacted them because it appeared that my parents would not be able to get a refund for the tickets they purchased for a December flight. They booked their tickets through AMEX travel services, rather than going directly through the Airline. One may think using your AMEX card and their travel services provides you some level of security, and that you could then easily get reimbursed if you are unable to travel! WRONG, WRONG, WRONG! In actuality there is NO advantage to using AMEX travel services! Unless you purchase their travel insurance, you as the customer are stuck. As they follow the guidelines and rules set forth by the airlines. In fact, when I tried to apply for a reimbursement for my parent's airline tickets through AMEX, they told me they were sorry but they couldn't help me. They also said that basically they would be out of pocket for the cost of these tickets because the airline most likely would not accept a medical reason for the request for reimbursement. ALSO WRONG! 

On August 21, I reached out to American Airlines. I went through their customer service system. Naturally my initial instinct was to write to chiefs and department heads. Firing off a nasty gram! But I then I read an article about the importance of going through the proper chain of command when making a complaint and request. That was actually VERY GOOD advice. The customer service representative assigned to our case was a real professional and kind. She actually called me and we discussed the issue over the phone. She then instructed me on what I needed to do, as the Airline Refund Center did not know the extent of my dad's illness and health condition (which is why they initially denied the refund). 

Because I was having trouble with the automated refund center on the Airline's website, this customer service representative agreed that I could send a more extensive medical letter to her email and then she would forward it to the refund center. Not only did she do that, but today, I heard back from the Airlines. They are granting the refund request for both of my parents. Peter and I only fly American Airlines, and now after this decision, we feel confident in our Airline choice. They handled the whole situation very well, and so much for AMEX's advice to me! Later today, I composed an email to our customer service representative thanking her for her professionalism and guidance on this process. As I believe it is important to not only write complaints, but also acknowledge outstanding service. 

The highlight of my day is I got to talk by phone to a friend of mine. She and I went to graduate school together and have been in touch ever since. We live in different states and we have done different things with our degrees. She is a very successful educator and researcher, and in all intensive purposes, I am sure there are professors of mine who may look at how I live my life and what I do as a potential failure. As I am not using my degree perhaps the way it was intended. Which is why when my friend said today, unsolicited, that I use my counseling skills every day in the foundation and with all the countless people I help, that made a big impression on me. She couldn't tell, but this beautiful reflection actually brought tears to my eyes. Which isn't easy, as I don't tear easily!

The second highlight is Peter and I went out to lunch today. It was wonderful to sit outside, without interruptions and reconnect. As Peter has an intense job search under way and many different opportunities that he is juggling. I was happy to hear about each one of them and to be able to focus on him, something I couldn't do for a month. 

August 31, 2020

Monday, August 31, 2020

Monday, August 31, 2020

Tonight's picture was taken in August of 2009. Mattie was in the hospital, and surrounded in the child life playroom by all his hospital friends. Next to Mattie was Liz. Liz was one of the visiting artists who came in periodically and worked with the children and families. Liz's gift and talents revolved around poetry and capturing feelings and thoughts using the written word. Mattie was a rich target, because he always had something to say. Mattie liked Liz and allowed her into his world, which he did not do for just any visitor. Over the course of the year, these two produced many joint works of art together. 


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

  • number of people diagnosed with the virus: 6,023,368
  • number of people who died from the virus: 183,431

I woke up at 4am today, in order to get showered, dressed, make breakfast for my parents, and clean up before catching my ride to the airport at 5:30am. I said good-bye to my parents (of course my dad was still in bed, as he wakes up officially at 8am), which of course was bittersweet. 

I continue to love how empty the LAX airport is, the one and only positive from the COVID lockdown. Typically trying to drive to the airport can take up to 2 hours because of the horrific traffic. Today, I was at the airport within 30 minutes. Everyone in the airport is less stressed and harried. Which makes flying that much easier. 
We had a wonderful pilot today on American Airlines! In all my years of flying, I have never had a pilot greet each of his passengers. He stood in the aisle and made a general announcement about the newness of the plane, the challenges of wearing a face mask during the flight but why it was important, and also he apologized that flight attendants would not be able to service customers given FAA regulations during COVID. He then walked up and down the aisle saying hi to passengers. Frankly I think every pilot should do this. It was a beautiful touch point and for a person who doesn't like to fly, it helped me to know who was flying to the plane. Don't you know he said goodbye to every passenger too! 

I snapped this photo as we were taking off from LAX. Do you see the Southwest  plane taking off on the other runway?

It was very foggy and misty in LA this morning, so I did not capture the best coast line shot. I wasn't sure how the flight would be, given the pilot said we would experience turbulence from St. Louis, onward to Washington DC. Fortunately in my opinion it was very tolerable and I had no problem. Though anytime a plane takes off and lands, it is a good flight. 
When we climbed up through the clouds, we could see the top of Catalina Island. One of the peaks on the Island is over 2,000 feet tall. 
Rest assured, one thing I can always find in Washington, DC is grayness, clouds, and rain. 

When I arrived back home I wasn't sure what kind of greeting I would get from Sunny! But he did not disappoint! 
He may have been with Peter for a month, but he has returned to his old ways of following me everywhere!