Saturday, April 3, 2021

Saturday, April 3, 2021

Tonight's picture was taken in April of 2007. That day we were going to celebrate Mattie's fifth birthday! We held his party at the National Zoo. I will never forget that day as there was torrential rain, and I thought Mattie's party was going to be a disaster. However, the kids loved the zoo tour in the pouring rain and the animals were out and about enjoying the fact that there were few to no visitors at the zoo. Except for us. The theme at the party was Lightning McQueen! 

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

• Number of people diagnosed with the virus: 30,667,184
• Number of people who died from the virus: 554,773

I will never forget April 2, 2002.....19 years ago. That evening I got into bed and was very pregnant. I was awaiting Mattie's arrival. While sitting in bed, Mattie was moving around in my tummy and was kicking up a storm. Clearly he wanted out. I began to watch TV, but within an hour, I literally felt something within me pop. I jumped out of bed and could see I was leaking fluid. My water broke, which only happens in about 15% of pregnant women. 

We called my doctor's office and the doctor on call asked if I was in pain. I said no! She then said I should get a good night's sleep (FUNNY!) and come to the hospital at 8am for admission. She said I would be having our baby tomorrow, which would be April 3! What she did not realize was I was going to have a hard labor, and through a cesarean section would have Mattie on April 4.

Honestly giving birth to Mattie was surreal. I found breathing exercises useless and given that Mattie's head was pressing against my spine, I was thankful for Dr. Mike (an anesthesiologist). I have no idea how women with an epidural actually deliver a baby vaginally. I say this because once I had the epidural, I couldn't feel anything beyond my breast bone. Everything was numb, and pushing wasn't going to happen. Even if I wanted to go through the birthing process, Mattie's body was in a position making delivery impossible. After over 24 hours in labor, I was running a fever and Mattie's vitals were weakening. Therefore, it was decided that I would have an emergency c-section. 

Things happened so quickly. We signed some sort of liability form and Peter got suited up to go into an operating room. I always find these liability forms entertaining. Mainly because if you are going to have surgery or a procedure, you are basically doing this because other options aren't available or safe. Therefore, when signing these forms I always think to myself... what other choice do we have? I used to say that often when signing all of Mattie's forms for cancer treatment! 

That evening, I got to see the importance of an anesthesiologist. Dr. Mike was right by my side during the c-section and explained everything that was happening. Setting me up for c-section was memorable, as my arms were tied down, and all I could think of was Christ on the cross. In addition, I saw a rope going from my abdomen to over my head. I had no idea what that was about. Later Peter told me they were using this rope to hold open my abdomen during the c-section. I was better not knowing! 

I will never forget what the doctor said after she opened me up. She literally said.... what is this? Not what you want to hear when delivering a baby! I remember asking her if something was wrong with the baby! She finally said the baby was fine, but that I had a grapefruit size lipoma on my bladder. She pulled Mattie out and I heard a big WAAHHH! The doctor told me he was beautiful and they brought Mattie over to me. Since my arms were tied down, all I could do was touch Mattie's foot with my fingers. 

They took Mattie to the hospital nursery and Peter went with him. I was then headed for surgery to remove the lipoma on my bladder. Honestly the whole night was a blur, scary, and stressful. Given that I had a c-section, I remained in the hospital for 5 nights, as I was in a lot of pain and was having trouble recovering. 

The first night, I was in a shared room and Peter wasn't allowed to stay. But I was a mess and I needed an advocate. Thankfully the next night I was moved to a private room and Peter was able to stay with me. It was Peter who changed Mattie's diapers for the first five days of his life. Peter had his hands full between me and Mattie. My legs and abdomen swelled up with fluid, and in addition being in pain, I began to have great anxiety and the start of postpartum depression. So much so that the hospital staff was willing for me to stay on longer in the hospital if I wanted to. But by five days of constant chaos in our hospital room, I needed a break. Coming home was a challenging adjustment, but I would say within a few weeks, my mood stabilized. Regardless of my mood, that did not prevent me from caring for Mattie, as right from day one he was my number one priority! 

Friday, April 2, 2021

Friday, April 2, 2021

Tonight's picture was taken in April of 2006, at Mattie's fourth birthday party. That was the first year we held a party for him outside our home. We had several friends from preschool in attendance. The theme was dinosaurs. We held the party at Riverbend Nature Center. It was a fun day, in which a naturalist did a little meet and greet with live animals, did a nature walk, and the children even got to do a plastic dinosaur bone dig in the park's sandbox. It was a day to remember. I love this photo! Peter caught a moment between Mattie and me, right before Mattie blew out his candles. 

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

• Number of people diagnosed with the virus: 30,606,378
• Number of people who died from the virus: 554,069

Since Mattie died, Sunday will mark the first birthday in which Peter and I will not be together to acknowledge the day. That may not sound like a big deal, but it is! 

I am in Los Angeles and Peter is in Boston. Peter took Sunny and Indie to visit his parents. As you can see, Sunny is stationed right by the door, next to the family cat! 

Peter drove to Rockport today, and they all had a lobster lunch at the Lobster Pool. 

Unlike me, Peter is NOT a lobster fan. So I am impressed he even ate it!

Since I have gotten to LA, I have made a mental note that my dad is taking a LONG time getting washed and dressed in the morning. For the past year, it typically took him 40 minutes total. Now it can take up to 90 minutes. That may not sound like a long time, but it is! Especially when we only have the caregiver for four hours a day and in that time, we need to get my dad showered, dressed, have breakfast, do cognitive brain games, walk 20 minutes (a PT exercise), and then do PT and OT exercises. Literally it is becoming impossible to get his morning routine done. 

So I started asking his caregivers what the hold up is upstairs with the showering/dressing process. Both caregivers are reporting that my dad is spending 40 minutes getting washed. They think he is being thorough, I think it is because with dementia he has no concept of time, nor does he remember what part he showered minutes before. Therefore, he is probably showering and re-showering himself! Tomorrow morning, I am going up to observe the process myself, because I believe my dad will need more guidance now, so he isn't taking 40 minute showers. However, why didn't they bring this to our attention? If I wasn't here, this conversation would never have happened. 

On top of everything else, my mom and I are now dealing with taxes, something my dad always did. This is something he wants to do, but he is no longer capable of this. He can't recall information for more than a minute or two and gets easily frustrated and shuts down. So we have added this to our very long to do list. 

I wish I could report feeling better but the cluster headache continues. I am not sure what is worse, the pounding head or the stabbing feeling in my eyes and the aching in the jaw. Balancing so much and feeling overwhelmed.  

Thursday, April 1, 2021

Thursday, April 1, 2021

Tonight's picture was taken in April 2005, at Mattie's third birthday party. That year the theme was Blue's Clues. A TV show Mattie absolutely loved! I remember, I even planned out a Blue's Clues game for Mattie and his cousins. It was a wonderful day with so many memories made!

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

• Number of people diagnosed with the virus: 30,538,007
• Number of people who died from the virus: 553,117

In the midst of great sadness this week, I had the opportunity to see a VERY CUTE program hosted by Huell Howser in 2014. The thirty minute program had me laughing, as Huell Howser visited the Bunny Museum in Pasadena, CA. The museum is NOT a bunny farm. No, instead it is a living gallery, housed with a personal home! It features everything BUNNY. Stuffed animals, pill cases, cookie jars, slippers, you name it and it exists in this museum. 

The Bunny Museum is a museum dedicated to rabbits that was opened to the public in 1998, located in a mid-century building in Altadena, California. The museum currently holds more than 35,000 rabbit-related items. Amongst the ever-expanding collection there are ceramic rabbits, stuffed rabbits, cookie-jar rabbits and 9 Rose Parade float rabbits. The strangest pieces may be the freeze-dried rabbits, which were once household pets and are now kept in a glass display case. The museum has held the world record for "owning the most bunny items in the world" since 1999 when it was acknowledged by Guinness World Records. At that point in time, it housed 8,473 pieces of rabbit memorabilia. The slogan of the museum is "The Hoppiest Place in the World."

The museum was co-founded by married couple Candace Frazee and Steve Lubanski, who started collecting the items after they began a tradition of giving each other new rabbit-themed gifts every day. Originally housed in the couple's residential home in Pasadena, the museum relocated to larger premises in Altadena in 2017.

Visiting with Huell Howser: Bunny Museum (2014)! If you have thirty minutes, check it out!!!! 

Wednesday, March 31, 2021

Wednesday, March 31, 2021

Tonight's picture was taken in April of 2004, during Mattie's second birthday party. I remember my mom snapping this photo right before the party began. Mattie had a train themed party and by that year, Mattie mastered the concept of having family over to celebrate! Mattie loved anything with wheels, so he was very excited to see all the train decorations.

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

• Number of people diagnosed with the virus: 30,458,572
• Number of people who died from the virus: 552,019

It was another crazy day in paradise today. Thankfully my parents had no reaction to the second COVID vaccine. After breakfast, my dad got it in his head that he wanted to look at tax documents! Given that he is an accountant by training, I get his desire to want to return to doing things he used to do. However, given his extensive cognitive decline, I am concerned that not only will this be too stressful, but it will also be completed incorrectly. Needless to say, chaos ensued for an hour for my mom and me with my dad. 

I was determined to write a posting on Facebook about my friend, Margy. It literally took me hours since I was constantly juggling things and got interrupted. But below is my tribute to Margy!

On March 28, my dear friend, Margy, died from a three-year journey with ovarian cancer. Though I write daily for Mattie Miracle, I find it hard to write anything about my friend. That isn’t because I am at a loss for words, but because there is SO SO MUCH to highlight. How do you effectively capture the life of a person who means so much to you? Given my loss of Mattie, you would think I would be adept at this!

I met Margy through Facebook in 2015. We had a mutual friend in the childhood cancer community, so I sent Margy a friend request. She immediately accepted but that wasn't where our connection ended. Instead, Margy wanted to learn more about me, Mattie, and our Foundation. It wasn't out of curiosity, instead I learned it was because Margy truly loved people and I believe she was put on this earth to help children with cancer and their families.

 

Margy spent the first year of our friendship reading EVERY posting on Mattie's blog. Since I have been writing every day for 12 years, that was a lot of reading and a true time commitment! Not only did she read my postings, but she left comments on Mattie's blog. Comments which I will always cherish. This was Margy, she invested deeply and with her whole heart into all her relationships. 

Margy had the ability of making you feel special, important, and cherished. This wasn't only with me, this was with everyone she touched. She selflessly gave of herself, listened intently, and remembered whatever you shared. Though some people would be emotionally drained from giving of oneself in such a selfless manner, for Margy this kind of giving energized her. 

I only knew Margy for six years, but in our six years together, we visited with each other monthly. In between we always text messaged. I can’t believe my friend will not be on the other end of a text or email. Our messages weren’t just a hi, how are you? No! Instead, our conversations verbally and in writing were deep. We covered hard topics like loss, living with grief, other life challenges, being childless and the list goes on. Through our talks I got to know Margy, "the Play Lady,” and all the children she helped directly through play, creative arts, emotional support, tickets to events in the DC area, and even mini grants. It did not matter how long ago Margy helped a child. She remembered each and every one. 

Margy devoted her life to meeting the psychosocial needs of children with cancer and their families. Which may be why we understood each other and had similar views about how to support children with cancer. As Margy's work intimately proved to her that childhood cancer is NOT just about the medicine. Through Margy, I heard stories about the children she worked with, and it wasn't just recounting tales, Margy LOVED the families she supported, and she remembered every detail about each child she helped. She took pride in her work and I wish Margy would have had the chance to meet my Mattie, as I feel they would have loved each other. 

What did I love about Margy? Here are 10 reasons (well there could be 100s, but I will stick with 10): 1) Her devotion to her husband, children, grandchildren, sisters, brothers, family and friends, 2) her ability to make you feel like you were the only person in the room, and she wanted to connect with YOU, 3) her compassionate heart for understanding that bereaved moms need support and we want to have our children remembered, 4) her love for her friend and colleague Kimber, a pediatric nurse who died from kidney cancer, 5) her courage, strength and hope she provided to hundreds of children, 6) her visits to my Mattie’s memorial tree during every holiday, to hang a special ornament on the tree in his memory, 7) her love of desserts and ice cream, 8) her love and respect for Karen, a child who died from cancer, which led to the creation of Growing Hope (a foundation Margy ran for over 20 years), 9) for freely admitting when she loved something or someone, and 10) her courage, strength, grace and dignity she showed all of us during her cancer journey. 

Because of the Pandemic, I have missed my face to face visits with Margy. This leaves me saddened that I did not get a chance to say goodbye to her. But in true Margy spirit, she left me a message, so that I have NO DOUBT how she felt, she decided to have friends and family contribute to Mattie Miracle in lieu of flowers. That is Margy’s last gift to me, and she knew I would understand it. As usual, even in death, Margy is thinking about helping children with cancer. 

Margy would always sign off with me…. “I love you Vicki Brown.” Therefore, it seems only fitting that I end this posting by saying, “I love you Margy Jost.” Your presence will remain alive within me, Mattie Miracle, and in every life you touched.

Tuesday, March 30, 2021

Tuesday, March 30, 2021 -- Mattie died 600 weeks ago today.

Tonight's picture was taken in April of 2003, at Mattie's first birthday party! Back then, Mattie wasn't into being around a lot of people, and he most definitely did not like noise. So it was a challenging party for him, in which he and I went upstairs for periodic breaks from comotion. In this photo, Peter was carrying Mattie out on our deck for his birthday cake! 

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

• Number of people diagnosed with the virus: 30,389,852
• Number of people who died from the virus: 550,930

I have lost track of what day number it is for me of dealing with an intense migraine and cluster headache. The cluster headaches are a nightmare. It feels like someone is stabbing you in the eye with a screwdriver. My entire head is sore, it is hard to keep my eyes open, and now the pain is migrating to my jaw. 

I took my parents to Rite Aid today to receive their second dose of the COVID vaccine. My mom was anxious about the side effects and I know my presence here has made it easier for her, because if she gets ill, she won't be able to care for my dad. My dad needs 24/7 support and supervision. I would have to say Rite Aid is wonderful, well run, and the pharmacist remembered them from their first dose. They made it super easy, no lines, no waiting, and no crowds. It was a very positive experience. 

Needless to say, I am giving my parents advil and tylenol, alternating them every two hours. I learned that trick from doctors, and it works. So hopefully they will wake up feeling fine tomorrow. 

Meanwhile, I learned that my friend, Margy, who died on March 28, 2021, chose in lieu of flowers, that donations be made to Mattie Miracle. I am deeply honored and to me this is Margy's last gift to me, and a gift that is meant to send me a personal and heartfelt message! The message being that Margy loved me and admired my commitment to Mattie. Any case, I posted below a snapshot of my communication to Margy's husband, Ken, on Margy's CaringBridge page today. 

Click on the image to enlarge it!

Monday, March 29, 2021

Monday, March 29, 2021

Tonight's picture was taken on Mattie's birth date...April 4, 2002. We are now seven days from Mattie's 19th birthday, and even though time has passed, I remember this moment in time like it were yesterday. Peter snapped this photo of Mattie in the nursery, right after his birth. I was still in surgery, as the doctor found a big lipoma on my bladder. But I knew Mattie was in good hands and literally the first week of Mattie's birth, Peter landed up taking care of both Mattie and me. 

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

• Number of people diagnosed with the virus: 30,321,943
• Number of people who died from the virus: 549,892

On Sunday, March 28, at 5:15pm, my friend Margy lost her journey with ovarian cancer. Margy was only 69, about to turn 70 on April 13. Margy has been living with cancer for three years, and NEVER went off treatment, as she had a very aggressive form of cancer. In fact, I learned from Margy that you don't even need to have ovaries, to get ovarian cancer. Meaning, she had a hysterectomy years before, pathology was done back then, and no cancer was detected. Years later, she was diagnosed with ovarian cancer, as microscopic disease had spread to her abdomen and lungs.

I have known Margy since 2015, as we became friends on Facebook, thanks to a mutual friend in cancer. Margy devoted her life as a play therapist, helping children with cancer and their families. In addition, she ran a successful childhood cancer non-profit, Growing Hope, for 20 years. Margy and I shared many core values and both of us were deeply feeling people and devoted a good portion of our lives listening and trying to help people. She and I had a mutual appreciation and respect for one another. 

Though Margy did not know Mattie, she honored his memory every holiday by visiting his memorial tree and adding an ornament onto it! I can't tell you how much her kindness meant to me. 

A Margy ornament added to Mattie's tree. Whenever Margy traveled she would look for special ornaments to add to the tree. A true friend! In fact, when Margy first became my friend, she literally read EVERY blog posting I ever wrote. She wanted to know about me and about Mattie. 

Margy helped me yearly with the Foundation's candy drive! She was the lady in red on the right! Margy collected candy for us all over Burke, VA, sorted it and then would deliver it to me!

Margy and her husband Ken (all the way on the left) came to visit our Foundation tent every September on the National Mall's event, Curefest. 

Margy and I found a way to see each other once a month. On that particular day, Margy brought her Mattie ornament to lunch, so she could share it with me before placing it on the tree for Christmas. 

In March of 2017, Mattie Miracle launched a snack and item cart at Children's Hospital at Sinai, in Baltimore. Margy came with me to Baltimore to celebrate the occasion. Margy was pictured here with Dr. Shad. 

Margy and me at Children's Hospital at Sinai. 

Another Vicki and Margy lunch! Margy bought a red heart for Valentine's day for Mattie's tree!

Ken (Margy's husband) snapped a photo of Margy at Mattie's tree. That beautiful red butterfly ornament came from Margy! 

Margy and Ken came to all our Mattie Miracle walks. Margy created a walk team called Team Kimber. Kimber was a pediatric nurse who worked with Margy. Kimber lost her battle with kidney cancer. Each year, Margy honored Kimber's memory and the team was comprised of Kimber's husband, children, and parents. 

Margy walking laps at the Mattie Miracle Walk. 

Margy, Ken, and me at Curefest on the National Mall. Curefest is a national event held every September to raise awareness for childhood cancer. 

This photo was taken in April 2019, to celebrate Margy's birthday. I bought her an ice cream cake, as she and I both loved dessert, especially ice cream. It is hard to believe but by that time, Margy was already a year into her cancer treatment. Though Margy did not feel up to going out, I would try to visit Margy monthly at her home. Up until COVID hit. I regret not being able to see my friend for a year because of this Pandemic and now it is too late. 

That day, I went over to visit Margy. She won our dining around town raffle basket and I decided to hand delivered it to her! 

Ken, Margy's husband, transformed the birthday photo we took together into a placemat. I literally had my own placement at Margy's kitchen table! I was so honored and felt like a part of the family. 

In 2019, Margy and Ken took me out for my birthday. Margy and I always met at the Carlyle Restaurant in Arlington. In fact, we would sit and talk for hours, that through the years we had the opportunity to meet the owner of this restaurant!

This photo was taken in 2019 at Curefest on the National Mall. 

Do you see the pretty seashell around my neck? It is a necklace that Margy brought back for me from the beach. That was Margy, despite managing cancer and all the side effects from treatment, she was always thinking about everyone else. 

A selfie together!

Margy at the Mattie Miracle Walk in 2019. 

I remember this day! Margy was in the hospital and had to get fluid removed from her lungs. I literally was in the room the whole time, while the radiologist did the procedure right in front of me. 

Christmas 2019. This was probably the last time I physically saw Margy in person! 

When I visited Margy, I would bring lunch for all three of us and always some sort of cupcake treat! 

Margy and Ken at my surprise birthday brunch. 

I had the opportunity to meet one of Margy's sister, Nancy. Nancy lives in Arizona, and became a Mattie Miracle supporter, thanks to Margy. 

A selfie! This photo was taken a few months after Margy's diagnosis. 

I am grateful for the six years I knew Margy. It is hard to believe she won't be there on the other end of a text message or email. In fact, if I ever posted something on Facebook, I knew for sure Margy would be one of the first people to comment on it. 

Margy was a one of a kind person and friend, and once again, I find I am forced to navigate the world without someone that I loved. 

Sunday, March 28, 2021

Sunday, March 28, 2021

Tonight's picture was taken at Bunnyland in 2005. Bunnyland was a spring festival held annually at Butler's Orchard in Maryland. It was a festival that had an activity for everyone in the family. I loved these bales of hay decorated for the season and I am so glad that Peter captured this special moment in time. Mattie was close to three years old, full of life, energy, and wanted to take in the world around him. I loved seeing the world through his eyes. 

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

• Number of people diagnosed with the virus: 30,256,895
• Number of people who died from the virus: 549,294

I absolutely love this huge aloe plant in my parent's backyard. So far it has been two days of sunshine and 80 degree weather. Really remarkable in March. It was my first full day in Los Angeles. Which means that my day started at 6am. I actually am not, nor ever have been, a morning person. So getting up seven days a week at this hour and then working non-stop throughout the day is a big adjustment. I came to LA with a migraine and cluster headache and this alone is debilitating. But add little sleep and caregiving, and it won't improve how I am physically feeling. 

When my dad's caregiver arrived this morning, she spoke to me for about 45 minutes to catch me up. I am glad that my mom slept in and I am encouraging her to do this daily, as the pace here and managing my dad's needs 24 by 7 is exhausting. 

Though you would think having caregivers helps and gives us four hours to get things done, unfortunately it doesn't. Managing caregivers, their needs, and demands really adds an additional layer of complexity, to an already complex situation. Today's story was I learned that my dad's other caregiver does NOT like going up and down my parent's staircase (from first to second floor). She does this about twice or three times a day, depending on what needs to get done. This woman is younger than me, has no disabilities, and therefore, I really found the comment ridiculous and inappropriate. Honestly! What does she want? I dismissed the comment, but this kind of commentary and feedback, I hear regularly. It's NOT helpful!

I have tried to explain to my dad how hard it is for my mom to balance everything and his caregivers. I can appreciate his perspective as to why he wants the caregivers around, but unfortunately he can't understand the feedback we are giving him. My dad tried to describe his morning routine to me. As if I had no idea about the routine! FUNNY since I am the person who created the routine, starting with figuring out the best and safest way to shower him. He doesn't recall my role in this and that I was the first person post-hospitalization to shower and dress him. I am also the one who established cognitive brain games right after breakfast. It is fine that my dad doesn't remember my role in this, but I feel it is important to remind him of this because when I make decisions or recommendations about his care, it is because I am intimately involved in it from day one. 

So during the time my dad's caregiver was here, I was involved with his brain games, his twenty minute walk up and down the block, folding laundry and the list goes on. The point is, whether she is here or not here, a family member really does need to be present to oversee the day. Meanwhile my dad's Irritable Bowel Syndrome is becoming harder to manage. I personally feel like my dad had this issue all my life! It is just harder now because he moves slowly and can't make it the bathroom fast enough. He also doesn't have the same sensation as when he was younger, so he can't anticipate that he will be having a bowel movement imminently. Needless to say, I dealt with quite a horrible mess. 

Meanwhile, Peter sent me this photo! Look closely. Do you see all the deer? Sunny had a great time on Roosevelt Island today and I love the photos from Peter, as it makes me feel like I am sharing his day with him.