Saturday, March 7, 2020

Saturday, March 7, 2020

Tonight's picture was taken on March 7, 2007. Hard to believe it was 13 years ago today. On that day, it started to snow and with that, Mattie wanted to go out on our deck and play. I have to admit I wasn't a snow or cold weather person, but because Mattie liked it, out we went. Instead of sandcastles, Mattie made snow castles. Similar to his sandcastles on the beach, he decorated these castles with whatever he could find! Back then we had a big rock, pine cone, and seashell collection, all things obtained during our many trips we took with Mattie. 




Quote of the day: There is some kind of a sweet innocence in being human- in not having to be just happy or just sad- in the nature of being able to be both broken and whole, at the same time. ~ C. Joybell

In the midst of non-stop news about the virus and people getting sick, we got out and took Sunny for a Walk today. We were greeted by daffodils, the sign of spring. Which is typically such a happy and freeing time, as we say good-bye to winter. 

The beauty of Great Falls, VA. 

The rapids of the Falls. 

 See how happy Sunny was?

Hard to keep a good boy down! He wanted to explore and meet the other dogs taking walks. 

Walking with blue sky and the sun, made it seem like there was nothing to worry about. 

The beauty of nature at Great Falls. 

Friday, March 6, 2020

Friday, March 6, 2020

Tonight's picture was taken in March of 2009. I wasn't actually present when this photo was taken. Peter was in the child life playroom with Mattie. That day, they got out this interactive board for Mattie to stand on to try to imitate the yoga character on the TV screen. Ironically there was a contest among Peter, Mattie, and Nurse Katie. Apparently Mattie won! But in all reality the fact that Mattie even attempted to do this was HUGE. As Mattie was wheelchair bound and couldn't walk or put his full weight on his right leg. 




Quote of the day: Any fool can be happy. It takes a man with real heart to make beauty out of the stuff that makes us weep. ~ Clive Barker

On Tuesday, we were scheduled to fly to Portland, Oregon to attend a conference. We have never been to Oregon and the beauty of conferences is you can get a feeling for a place you wish to return. 

In any case, we learned today that the conference was canceled due to the coronavirus. It was a smart decision, especially given that the majority of attendees all work with a vulnerable population... children with cancer. Several of our research grant recipients were going to be presenting at this conference, so it is a sad state of affairs that conferences, flights, and vacations are being cancelled. Unfortunately we are out of pocket for the lost conference registrations and American Airlines is being difficult with us. It reminds me once again, DO NOT book flights way ahead of your event, because it makes it harder to get compensated. Because we booked these flights in September of 2019, we are getting penalized. 

Meanwhile, Peter reminded me of this event back in 2003..... 17 years ago today, I defended my dissertation. At the time, I thought that whole process was torture and down right hazing. But in comparison to childhood cancer, it was very doable. Or one could say, it prepared me for the future battle with childhood cancer and running Mattie Miracle!

Thursday, March 5, 2020

Thursday, March 5, 2020

Tonight's picture was taken on August 3, 2008. By this point, Mattie was diagnosed with cancer. We were about a week into learning about bone cancer. That day, Peter and JP (our neighbor) took JJ (the Jack Russell Terrier) for a nature walk. The goal was to try to keep things as normal as possible for Mattie. Since Mattie loved nature and JJ the dog, we thought this would be a positive distraction. I remember JP's willingness to come along and support Mattie. 







Quote of the day: The Coppersmith is a bird who makes a noise exactly like the beating of a little hammer on a copper pot; and the reason he is always making it is because he is the town crier to every garden, and tells all the news to everybody who cares to listen. ~ Rudyard Kipling

For 12 years, we have seen this little dog. Practically every day. JJ, the Jack Russell Terrier, was like the mascot for our complex. He came into our lives as a puppy. He grew up with us and Mattie loved him. In fact, Mattie and JJ were so close, that when Mattie died, JJ would come visit us every afternoon and sit right outside our front door, in hopes of seeing Mattie. One day, JJ came inside our home and took a sandal of Mattie's. For the longest time, JJ slept with this sandal back in his own home! JJ was depressed with Mattie's death, and went on a hunger strike for a bit of time. 

As I mentioned last night, JP (JJ's owner) died on February 25. Peter and I are trying to come to terms with the fact that we will no longer see JP or JJ. All I can say is our commons area is not the same now. Things appear quieter and a reminder that we live in the city, where people truly do not talk to each other, and create a community. JP was a bit like tonight's quote. Some may have called him the town crier. He knew what was going on with everyone and reported out so we were all in the know. JP walked in our commons area daily and I always knew I would see him at 3 and 5pm, walking by my window with JJ. Some days I would go outside with Sunny and chat with JP and other days, I would just open my window and chat with him from inside. It was my daily constant. 

Working from home, I do not have the daily interactions like most people. Which is why, JP and JJ became my constants. I knew someone was always looking out for me, for our home, and I also knew that JP was a Mattie memory keeper. Losing JP and JJ (as he went to live with JP's nephew) is life altering and reminds me once again how fragile life is and it evokes the feelings of losing Mattie all over again. 

One of the last times I chatted with JP, he said, "young lady," which was what he called me...... "are you sure you are old enough to drive!?" He was being funny and at the time I laughed it off, but now I view it as the sweet comment it was meant to be. 

JP was an art dealer, appraiser, and collector. He gave Mattie this poster in May of 2009. It featured Paco Camino, who in Mexico is hailed at the number one bullfighter, and Mattie Brown! Mattie loved seeing his name on this poster, and for the longest time this poster hung in our front hallway.

Needless to say, I am still in shock about his death. JP was a force and a big personality, and without him around, the void is noticeable.  

Wednesday, March 4, 2020

Wednesday, March 4, 2020

Tonight's picture was taken on March 8, 2003. That day we took Mattie to the US Botanical Gardens. One of our favorite winter time places to visit..... thanks to the lush greenery and hot house like temperatures! Even in winter it felt like you were visiting Florida inside the Gardens. I think this photo is a great composition, as we were each smiling and enjoying the moment together. 


Quote of the day: Volunteering is the ultimate exercise in democracy. You vote in elections once a year, but when you volunteer, you vote every day about the kind of community you want to live in. ~ Author Unknown


I will be writing about this in the days to come, but I finally can report that our long time neighbor who we were very close to, died on February 25. In the February 23 blog, I wrote about my neighbor, JP, and how we called the paramedics to take him to the hospital. However, because we aren't his family, we couldn't openly discuss what had transpired. But today, we shared the sad news with our complex, that JP died last Tuesday. A week has gone by since his death and things are not the same for us. He was a person who saw me grow up from a student to a mom, and then face life as a bereaved mom. We saw each other every day practically for 27 years! That is a long time, and not having our friend around now is disorienting and again, I feel, a bit of Mattie's history has been removed from this earth. I will be sharing more to come, as his family has appointed Peter as the executor of his estate. 

Last week we visited Capitol Hill, and today we returned to visit Senator Shelley Capito's and Senator Chris Van Hollen's offices. It has been a very informative two weeks as we have learned more about the appropriations of the STAR act and more specifically what to advocate for as it relates to psychosocial care. 

As promised, photos from last night's annual volunteer appreciation dinner at Magnolia's on King. The restaurant gives us access to their entire second floor lounge and dining area. Not only is it decorated in Mattie Miracle colors but it is lovely  space in an historic building. Almost like hosting an event in a private home. We are grateful to the staff for working very hard for us to have a memorable evening. 

Another view of the room. I made flower displays and Peter and I put together a power point presentation, which included videos and financial data that was captured from last year's Walk. Having data enables us to track the Walk's progress and challenges from year to year, and it also enables us to hone in on areas which can provide us greater fundraising success. 

I think it is a charming private room. Perfect for our sized group!

Typically Peter takes the photos. But I wanted him in the picture this year. Unfortunately the person who took our group photo cut several people out. We had a group of 21 people at the dinner, and many of these wonderful volunteers have been with us for 11 years now. In fact, most of these individuals were supporting us through Mattie's cancer battle as well. So that means they have been with us for 12+ years, committed to our cause.  

This was the menu I created for last night's dinner. 

The restaurant even made a special cocktail for our guests.... the Miracle cocktail! 

Tuesday, March 3, 2020

Tuesday, March 3, 2020 -- Mattie died 544 weeks ago today. 

Tonight's picture was taken in April of 2005, during Mattie's third birthday party! That year Mattie was into Blue's Clues (the kid's show on TV). So naturally he wanted a Blue's themed cake and party. The first three years of Mattie's life, I used the same bakery in Silver Spring, Maryland to design his cakes. The cakes weren't only a visual masterpiece, but they were also delicious!

Quote of the day: Cake is happiness! If you know the way of the cake, you know the way of happiness! If you have a cake in front of you, you should not look any further for joy! ~ C. JoyBell C

Today is in the 60's in Washington, DC. It most definitely feels like spring is in the air. As I look out the window, I can even see daffodils blooming in Mattie's memorial garden. 

We took Sunny to Roosevelt Island today. I love walking the Island during the week, when few people are there. Sunny loves the trees and to be surrounded by nature! Even the deer were out and about! 

After our walk, we drove to Silver Spring to pick up the cake chocolate ganache cake we ordered for our annual volunteer appreciation dinner tonight. This cake and Mattie's birthday cakes were created by the same bakery! 

See a theme!? This was the cake we featured at last year's volunteer dinner. Created by the same bakery. In honor of Mattie last year, I designed an all vanilla cake with strawberries. 

I will share photos of tonight's event in tomorrow's blog! 

Monday, March 2, 2020

Monday, March 2, 2020

Tonight's picture was taken in March of 2004. Mattie was almost two years old and as you can see he loved spending time out on our deck. I should explain that I was painting part of the deck and Mattie was supervising. Not to mention the fact that he was attaching his tunnel system together and designing play schemes around it. 

Quote of the day: There are moments when I wish I could roll back the clock and take all the sadness away, but I have the feeling that if I did, the joy would be gone as well. ~ Nicholas Sparks

Tomorrow Peter and I are hosting our annual volunteer appreciation dinner. We have a core group of about twenty volunteers who have been planning our Foundation Walks for over a decade. These individuals give up their time, share their resources, and have been committed to the Foundation's mission since it started in 2009. They are something to celebrate. 

To me no event is complete without flowers. Certainly I could ask a florist to make these table arrangements, but I know I can make four lovely displays for the price of one florist arrangement. 

To me these flowers look springy and in line with Mattie Miracle's color theme. 

A close up!

The 11th annual Walk and Family Festival is on May 17 from 10am to 2pm. So far we have 10 confirmed corporate sponsors and several individual sponsors. Our goal is to raise $100,000 and we are well on our way with $32,250!

Check out our Walk website:
www.mmcfwalk.com

Sunday, March 1, 2020

Sunday, March 1, 2020


Tonight's picture was taken in March of 2003. Mattie was 11 months old and this was his first trip on an airplane to Los Angeles. That day we took Mattie to Huntington Gardens. This photo captured Mattie's favorite mode of transportation... on Peter's back!



Quote of the day: Then, after the first year anniversary of your child’s death has come and gone, the silence invites itself in. ~ Ann Rami


I have signed up for an online magazine called Still Standing. In my inbox today, I found an article that immediately captured my attention, it is entitled...... On the second year of (forgotten) grief. The article is written by a bereaved mom of an only child. As I read the article, I felt as if the article could have been written by me, as she was expressing many of the same sentiments and feelings I experienced. In a nutshell, everyone thinks that the first year after a child dies is the worst. Your care community is very in tune, supportive, and reaches out constantly during that first year. But when that calendar flips over to year two, it is as if a switch is triggered, and that same support community expects you to bounce back and return to NORMAL. TO MOVE ON and GET OVER IT!

Unfortunately that doesn't happen. On the contrary, year two and frankly year three are horrific. This is about the time when the reality and magnitude of child loss really hit. It is also when the mind starts kicking in and you become much more reflective and are able to face the emotion of such a traumatic loss. Yet just when I was facing these raw emotions and reality, my support community stepped back. So in a way, it was like a double loss. A loss of Mattie and a loss of those who supported me through this crisis. All I can say is it was a very lonely, isolating, and depressing place to be. It is a time I will never forget and certainly I can appreciate how our community needed a break from childhood cancer and death, but I never got a break, and still haven't gotten a break. As this is my life. Expect back then I not only had to face having no child, but I also had to face that I no longer fit into our social community. A painful reality. 

I am under no delusion that this is unique to Vicki. This happens to most if not all parents who have lost a child. Yet, these are things we do not always talk about. Which is why the candor of this article was refreshing. This information needs to be shared so when parents face the second year of isolation and abandonment, they will understand that this isn't personal or specific to them. It is a societal pattern that so many of us have had to suffer through. Not that this eases one's feelings or pain, but there is a certain level of comfort knowing you aren't crazy, you haven't done anything wrong, and that YOU ARE NOT ALONE. 

On The Second Year Of (Forgotten) Grief:

https://stillstandingmag.com/2020/02/28/on-the-second-year-of-forgotten-grief/

Saturday, February 29, 2020

Saturday, February 29, 2020

Tonight's picture was taken in March of 2004. Mattie was almost two years old and that day we took him to the National Children's Museum. In one of the rooms, it focused on transportation! Well Mattie was transfixed on all the vehicles from a motorcycle to even a fire engine!


Quote of the day: Music gives a soul to the universe, wings to the mind, flight to the imagination and life to everything. ~ Plato

Today we saw a musical production called Relativity. We know the artistic director of Take the Stage Performance Company, Susan Thompson. Susan is the wife of one of our Mattie Miracle board members. Each February, we attend the Company's musical production. 

The Company's performers are all teenagers. Who clearly spend a lot of time rehearsing for this big production. Needless to say their productions never disappoint. I would like to note that Susan gives FREE tickets to children who have cancer and their families each year. It is a very thoughtful gift she does in Mattie's memory. 








The musical helped to take my mind off my teeth for a few hours. I had a root canal on Thursday, which was supposed to take my pain away. Instead, I would say I have pain times ten. I have been in communication with the endodontist and we are giving it a week to see if my nerves calm down. Given that I had this issue for almost a year, he feels it may take time to heal. We shall see. All I can say is thank goodness for advil and tylenol. 



Check out the Performance Company's promotional video from their 2019 musical:

Friday, February 28, 2020

Friday, February 28, 2020

Tonight's picture was taken in March of 2005. Mattie was almost three years old! This was what our living and dining rooms used to look like! Trains and cars everywhere. Of course the sippy cup of milk was always part of the journey! I traveled everywhere with a sippy cup of milk, regardless of the season. 

Quote of the day: Charity is just writing checks and not being engaged. Philanthropy, to me, is being engaged, not only with your resources but getting people and yourself really involved and doing things that haven’t been done before. ~ Eli Broad

Pictured from left to right: Kelly Beck (Head of child life), Adina (Mattie Miracle's child life specialist), Susan Daw (Director of Children’s Hospital and Women’s Services), Peter, Vicki, and Mary Jane Herbert. 

We went to Children's Hospital at Sinai today in Baltimore to donate $46,000 to the Mattie Miracle Child Life Program Fund. A fund that pays Adina's (our child life professional) full-time salary. 

As tonight's quote points out, we wouldn't be able to write such a check without the incredible support of all of our donors. Clearly Peter and I are passionate about psychosocial care and I believe that Mattie's story has engaged our support community. 

Pictured left to right: Vicki, Dr. Aziza Shad, Peter, and Adina

Dr. Shad was the physician on call the day Mattie died. We have followed her to Baltimore to support her programs and her great work. 

It has been a tradition that with check signing days, we bring cupcakes. The cupcakes are made by me and they are in memory of Mattie. As cupcakes were his food of choice when on treatment. 

After our cupcake party, we went around the pediatric units with Adina and pushed our snack and item cart.

Adina made these wonderful displays about child life and her work at the hospital. I am so glad we have copies of them now. 

Some of the things Adina does in a given week. 

Reflections from a mom of a 4 year old who deeply appreciates Adina. It is worth reading!

As tonight's quote points out.... the beauty of doing things that haven't been done before.... specifically our snack and item carts are unique, they engage our support community, but they also help thousands of families a year. 

Thursday, February 27, 2020

Thursday, February 27, 2020

Tonight's picture was taken in February of 2003. Mattie was 10 months old and one thing we knew about Mattie right away was that he loved his bottles. He would get an almost dreamy look on his face while consuming a bottle. Both Peter and I always got a kick out of this, but in reality this was the only time (other than sleeping, which he rarely did) when Mattie wasn't moving.


Quote of the day: Love conquers all things except poverty and toothache. ~ Mae West


In October of 2019, I had my first root canal. I did not know what to expect but it is much easier than it sounds. In fact, there are many jokes about root canals, but frankly I think tooth pain is worse than having a root canal. Mind you before having a root canal, I suffered with tooth pain from March to October 2019. The reason for the lapse in time was because the thinking was my pain was from a filling, which caused my dentist to remove the old filling and replace it with a crown. But the crown only made the situation worse. While this one tooth was bothering me, two others began problematic. So last week I had a second root canal and today a third! I am hoping this is it. Today's procedure was about two hours because of extensive nature of my root system. But with modern technology, you remain numb, feel very little pain throughout the procedure, and overall it preserves the tooth. 

I can't say that I am pain free right now. As it takes a few days to recover from the assault on the tooth. I included some information below about root canals, but I am here to dispel all the myths about them.  

“Endo” is the Greek word for “inside” and “odont” is Greek for “tooth.” Endodontic treatment treats the inside of the tooth. Root canal treatment is one type of endodontic treatment.

To understand endodontic treatment, it helps to know something about the anatomy of the tooth. Inside the tooth, under the white enamel and a hard layer called the dentin, is a soft tissue called the pulp. The pulp contains blood vessels, nerves and connective tissue and creates the surrounding hard tissues of the tooth during development.

The pulp extends from the crown of the tooth to the tip of the roots where it connects to the tissues surrounding the root. The pulp is important during a tooth’s growth and development. However, once a tooth is fully mature it can survive without the pulp, because the tooth continues to be nourished by the tissues surrounding it.

Endodontic treatment is necessary when the pulp, the soft tissue inside the root canal, becomes inflamed or infected. So my tooth looked like the right hand side of the photo. 

The endodontist makes an opening in the crown of the tooth. Very small instruments are used to clean the pulp from the pulp chamber and root canals.

After space is cleaned and shaped, the endodontist fills the root canals with a rubber-like material called gutta-percha. The gutta-percha is placed with an adhesive cement to ensure complete sealing of the root canals.