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



March 29, 2021

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. 

March 28, 2021

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. 


March 27, 2021

Saturday, March 27, 2021

Saturday, March 27, 2021

Tonight's picture was taken on Easter of 2004. We took Mattie to the US Botanical Gardens in Washington, DC. April is a special time at the Gardens because the azaleas are blooming! I always told Mattie these flowers came out to celebrate his birthday month! He liked hearing that! Whenever we went on a nature walk, Mattie always came home with something he found. That day, he claimed two dandelions and to me this picture shows two happy campers. 





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

  • Number of people diagnosed with the virus: 30,218,228
  • Number of people who died from the virus: 548,825


Today I got up at 4am in order to get to the airport in time for my 7am flight to Los Angeles. Both Indie and Sunny were NOT pleased with my departure. 
Sunny knew immediately when I got up first that something was very wrong today. He took to our bed to stay close and keep his eyes on us. 
Peter sent me this photo! Sunny gets a bit anxious when I am not around. It was a 5.5 hour flight to Los Angeles, and as soon as I got to my parent's house, I hit the ground running. 

My dad needed a haircut and his nails trimmed. Both were way too long. I have showed his caregivers how to do both, and yet they don't! Which is why I can't stay away from here very long. My mom needs a break from the ridiculous pace here. So now my days once again begin at 6am starting tomorrow. 

We took my dad out to lunch today. He is eating much better now and has gained back weight. Which is a great improvement from 2020, after his two hospitalizations. He truly looked emaciated back then. 

After lunch, I came back to their home and did more chores. Starting with hand washing their car and vacuuming the inside. But now I feel like I overdid it, and considering I have been struggling with a migraine and cluster headache for two weeks now, I have to stop for today. 



March 26, 2021

Friday, March 26, 2021

Friday, March 26, 2021

Tonight's picture was taken in April of 2002. Mattie was about five days old. We were taking him home from the hospital. For some reason, I told Peter we had to take photos! So I snapped this photo in front of the hospital sign. I remember this day as it were yesterday. Mattie was born at this hospital and his cancer was diagnosed at this hospital. 


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

  • Number of people diagnosed with the virus: 30,137,807
  • Number of people who died from the virus: 547,812


Today I learned that my friend, Margy, is losing her battle with ovarian cancer. I remember the day she was diagnosed, January 24, 2018. I know because Margy called me on my way home from zumba class. When she told me she wanted a second opinion, I told her she had to see my doctor. I literally hung up with Margy and contacted my doctor. I have my doctor's cell phone number, and not only did she answer me, but she made an appointment for Margy for January 26 in Baltimore. An appointment that I attended with her and her husband.

I met Margy through Facebook of all things in 2015. We have a mutual friend, which is how we got connected. Margy devoted her life to helping children with cancer, as she ran a successful non-profit for twenty years. Once Margy was diagnosed, she gave up her position on the non-profit and joined the board of Mattie Miracle. Margy is a big supporter of ours and has been a trustworthy, loyal, and compassionate friend. Not a person who is replaceable. I am saddened that her care has turned from curative to end of life/comfort care. Words no family wants to hear. 

Of course with COVID, it made it impossible to connect live with Margy. Something we used to do prior to the Pandemic. We would have monthly get togethers, and when she was diagnosed, I would come to her house. I have missed my Margy moments this last year, as phone and zoom are not the same to me. Now unfortunately I will never have the opportunity to say goodbye to my friend in person. Makes me pause and reflect that waiting for the right time in life, never happens. You have to make the time and connections in the moment. 

On Margy's birthday last year (during COVID), I sent her this video! Since her birthday is April 13, I was thinking about what to do this year. Unfortunately cancer had other plans. Click on the photo to see the video!

March 25, 2021

Thursday, March 25, 2021

Thursday, March 25, 2021

Tonight's picture was taken in April of 2006. Mattie was four years old. That day I took him to the Reston Petting Zoo. A place he loved to go! We posed in front of their big Easter bunny! Mattie loved the small size of this zoo, but he especially loved riding the ponies, the wagon ride through their fields to meet ostriches, and of course feeding the goats. 






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

  • Number of people diagnosed with the virus: 30,066,575
  • Number of people who died from the virus: 546,300


Today my friend Mary Ann wrote to me about Beth Parker. As she remembered quite well that Beth interviewed Mattie Miracle twice in 2012! I am deeply saddened to learn that Beth died of cancer on Monday. Another incredible person taken too soon by this horrible disease. Beth was a gifted reporter, with a compassionate heart. Each story she did on Mattie Miracle was powerful. What upsets me is we never got these interviews on a DVD or electronic file. So they are lost in the ether, unless I contact and pay for these interviews through Fox 5. 

Former FOX 5 reporter Beth Parker dies from cancer:

https://www.fox5dc.com/news/former-fox-5-reporter-beth-parker-dies-from-cancer


Beth interviewed us in May and November of 2012. In May, she met us at MedStar Georgetown University Hospital and highlighted our work and our Snack and Item Cart. 

This was a group photo we took together! Sitting from left to right are: Dr. Aziza Shad, and Jess Abrams (at the time the child life specialist we funded).

Standing from left to right was: Beth, me, Jey (Mattie's buddy), Nelson (Beth's cameraman), and Peter. 

On November 15, 2012, Beth came to our home to cover the Candy Drive. She did a phenomenal piece for Fox 5. You should know that after Beth learned about our Candy Drive, she used to collect candy for us in her neighborhood and then would hand deliver it to us each year until she moved to California! Who does that? Beth! To me, this showed her character, love of people, and commitment to her community. 

On the November 15, 2012 blog, I wrote:

I spent 90 minutes with Beth and her wonderful cameraman, Steve. I loved Steve's creativity and I truly think the candy inspired both of them. Beth and Steve greeted me today with a bag of candy that they contributed to the drive, and it is their candy that you can see me sorting in the news piece. They thought of everything! As I told Beth, talking about Mattie helps to keep his memory alive and this is VERY therapeutic. After all, if you could see how much candy we sorted, you would either think something is profoundly wrong with us or that it is a labor of love. Which it is!

 

I found this on the internet. Someone asked Beth this question........

You had a long tenure in journalism — 17 years. What did you love about it?

I love people. Telling people’s stories has always been compelling to me. They joke at work that I like talking to strangers. I came up doing general assignments and eventually lots of investigative reporting. I covered three presidential inaugurations, I covered 9/11 first from D.C. and then from New York for our D.C. station. I had a front-row seat to a lot of the huge current events that shaped our nation in my adult lifetime, and I feel very fortunate for that.

Toward the end of my journalism career, though, I was doing more and more feature reporting because not only was that interesting to me, but I found that people weren’t getting enough of that. These weren’t stories about famous people; they were stories about regular people and seemed to resonate so much more with viewers.

March 24, 2021

Wednesday, March 24, 2021

Wednesday, March 24, 2021

Tonight's picture was taken in March of 2003. We took Mattie to Los Angeles to visit my parents, and while there, we went to the LA Zoo. The Zoo has a children's area that enables them to feed and pet the animals. I snapped this photo of the goat encounter. I think it was priceless that Peter was trying to get the goat's attention and Mattie was busy petting it!


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

  • Number of people diagnosed with the virus: 29,991,975
  • Number of people who died from the virus: 544,922


I would like to say my headache has improved, but I am back to where I was last evening. I started today feeling better than yesterday but after several hours staring at a computer screen, my headache takes over. I just bought a pair of blue reader glasses, so we shall see if that helps over time. But given how I am feeling, I am keeping today's message short. 

March 23, 2021

Tuesday, March 23, 2021

Tuesday, March 23, 2021 -- Mattie died 599 weeks ago today. 

Tonight's picture was taken in March of 2005. That weekend we took Mattie to Bunnyland at Butler's Orchard. It was the perfect outdoor family event each spring. As they had all sorts of fun activities, not to mention a chance to ride in a wagon full of hay. I remember these moments so well, as we took Mattie to the Orchard during pumpkin and Easter egg seasons. I am so glad we did all these things with Mattie, because if I did not they would have been lost opportunities. 





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

  • Number of people diagnosed with the virus: 29,918,936
  • Number of people who died from the virus: 543,741

I feel like I am out of commission. I have had an intense migraine for weeks and now I have cycled back to having a cluster headache. Lay people call this kind of headache a "suicide headache." I can see why, as the pain could make you go insane! 

The cluster headache occurs in cyclical patterns or cluster periods, and are considered one of the most painful types of headache. A cluster headache commonly awakens you in the middle of the night with intense pain in or around one eye on one side of your head. I haven't been able to sleep well, my eyes are hard to keep open, they are bloodshot, and let's not talk about the head pain. For me, my headaches are directly linked to work and stress. Staring at a computer intensely for the last month on top of other stressors I am balancing, have caused havoc for me. 

Interested in learning more about cluster headaches, go to:

https://americanmigrainefoundation.org/resource-library/cluster-headache-2/

March 22, 2021

Monday, March 21, 2021

Monday, March 21, 2021

Tonight's picture was taken in March of 2006. Mattie was almost four years old. This was a very unusual sight in our home. Which was why I probably took a photo of it! Mattie never napped, he did not even like doing that when he was a baby. Therefore I knew then, as I do now, Mattie was most likely getting sick and had a fever. 


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

  • Number of people diagnosed with the virus: 29,861,457
  • Number of people who died from the virus: 542,845



Today truly felt like a spring day. It was in the 60s and the sun was shining. Even our amaryllis was happy. I inherited this plant from a friend who did not want to be bothered with it. So I took it on, and it is very happy in our living room. It blooms every year! 








In our commons area, we have a Mattie memorial garden. The daffodils spring up every year, and remind us that warmer weather is on its way. I call it Mattie's memorial garden because Mattie used to like to store his stones, acorns, and sticks in this spot! On every nature adventure, Mattie came home with a keepsake. He was a nature acquirer and after he died we did clean up the area and planted flowers and bushes in its place. 



Years ago, someone gave me a hyacinth. When it died in our home, Peter planted the bulb in Mattie's garden. It comes back every spring and never disappoints. 
I love the faces of daffodils. They seem so expressive. 

We maybe in the city, but greenery is beginning to pop out all around us. Definitely one of the best seasons in Washington, DC. 



March 21, 2021

Sunday, March 21, 2021

Sunday, March 21, 2021

Tonight's picture was taken in May of 2009. Mattie was at the "Mattie March." The March was an outdoor event his support community planned for him. I remember timing Mattie's cancer treatment around this event! That day, Mattie's preschool buddy, Zachary, stayed close to Mattie. Zachary was a great and loyal friend to Mattie throughout his cancer journey. I always say I learned a lot about friendship from watching these boys interacting over the years. 


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

  • Number of people diagnosed with the virus: 29,816,688
  • Number of people who died from the virus: 542,343


After about a month developing our Virtual Walk and Raffle Websites, they went live today! I spent the day testing them out and making purchases. All I can say is thank goodness I started this project early! To check out the Walk site, go to:

https://2021.mmcfwalk.com/walk


Given the nature of the new platform, I am unable to integrate the Walk and the Raffle into one website. Hopefully the company we use to host our event will have this issue corrected by next year. 

To check out our Raffle website, go to:

https://2021.mmcfwalk.com/raffle