Saturday, July 31, 2021

Saturday, July 31, 2021

Tonight's picture was taken in July of 2003. It was our first trip to the Outer Banks of North Carolina. Mattie never saw so much sand or heard the ocean before that trip! Mattie did not care for either. So we spent a lot of time out on the deck of the house playing with the hose. As Mattie had a fascination with the hose and spraying things down! That was Mattie! The entire week we were at the beach, we only visited the sand once! All that changed the following summer in 2004, Mattie loved sand time and the building and creating that came with it! What I learned from Mattie was he was going to do things on his own time line, not someone else's. 

*** It was my hope to actually return to quotes! But in Washington, DC masks have been mandated again indoors, starting today. The reason I am recording Coronavirus numbers on the blog, is for historical purposes. 

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

• Number of people diagnosed with the virus: 34,964,685
• Number of people who died from the virus: 613,110

Another busy day on the FARM! This was the first day this week Peter had a chance to see the sanded and stained floors. He now totally gets what I mean.... the smell is toxic! Frankly it has dissipated since Monday, but it is still shocking to the senses!

I thought there was going to be wood particles all over the house from sanding the floors! But the company we selected has a fantastic sanding machine, with a bag attached to like. Not unlike a lawn mower. The sand gets sucked up into the bag and not all over the house! I wish I could say the same thing for the plaster dust. It is EVERYWHERE, as the painters had many ceilings and walls to repair. 

Today I decided to concentrate on the second floor. I cleaned all the bathrooms and began vacuuming floors. I was able to get any flecks of paint off the floors, but tomorrow, I actually have to wash the floors because it is the only way to truly remove the plaster dust. Vacuuming was only the first step! 

Tonight I share a letter that was written to us by our friend, Tad. To put it into context, Tad's son Kazu, and Mattie met in elementary school. They hit it off immediately and on the weekends they took swimming lessons together. The funny part about this was the pool was indoors, but the water was frigid. So the boys wore wet suits, like you would wear when scuba diving. I think Tad's letter reminds me that Mattie remains in the memory of all those he touched and his short life serves as an example to love in the here and now. Not to put off expressing feelings until tomorrow. Because in Mattie's case tomorrow did not come. 

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Living Mattie Moments by Tad Ferris

I live Mattie moments all the time.

I look back when I first started to live these moments.

In my mind's eye, I see Mattie, bobbing up and down in the water in his swimsuit, selected carefully to protect his slender, active body and keep him as warm as possible, smiling next to my own son, also bobbing up and down in the water in his swimsuit, also selected carefully for warmth and protection. I hear Mattie's gentle "hi" as I walk up to Pete and Mattie, my son's gentle "hi" in response, as well as the welcome touch of Mattie's "hi five" on my hand as we enjoy the comfort of routine, the sound of Mattie and Kazu entering the water for swimming lessons, and the sight of loved friends. 

The disease Mattie endured and that took his earthly form pains like a mortal wound. Yet I still SEE Mattie, every day. He awakes, rubs his eyes and looks at me each morning. He reassures me with the welcome touch of a "hi five" before running up the sidewalk to class. He breaks into a broad grin when I walk in the door. He then approaches me, I hug a lot more tightly than I used to, and he whispers a gentle wish when we talk about when we'll next be together. I see Mattie in my son, in Kazu's waking moments, in his reluctant steps toward independence, his every need for reassurance, in his bonds that can never be broken.

Everyone in this loving community, who has cared for or about a child, who has known Mattie, can see Mattie in every moment. It causes us to hold everything more dear. It teaches us to love without question. I wish all of us, more Mattie moments. 

Friday, July 30, 2021

Friday, July 30, 2021

Tonight's picture was taken in July of 2004. This was Mattie's second trip to the Outer Banks of North Carolina. That year, we invited Peter's parents, his brother, sister-in-law, and Mattie's cousins along. That year Mattie loved sand time, and though the water still scared him, it did not prevent him from learning to play and build in the sand. 

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

• Number of people diagnosed with the virus: 34,927,584
• Number of people who died from the virus: 612,934

Every Friday, since April, I have been participating in a two hour conference call to work with a research team to design and develop an implementation science proposal. The proposal is to qualify for a $1M government grant, over four years. If we should be lucky enough to win this grant, this would then be the first largest implementation study with the psychosocial standards of care.

After the call, Sunny and I jumped into the car to head to the house as both the painters and the wood floor folks wanted me there. This is what our living room used to look like when we bought the house. It had dark brown walls and the floors looked pink! What you may not be able to see is the room had speakers near the ceiling, wires, and holes everywhere. 

This is what the living room now looks like! I can't tell you how it brightens up the house! The floors are stained and three coats of oil sealant are going on it. Today only the first coat went on, and the rest will be done on Monday and Tuesday. Then in about a week, the team will be back to sand the stairs and banister, so that all the woods on the first floor match. 

This is what our family room used to look it. Holes in wall, mirror over fireplace, and the orange rectangle on the wall is actually old paint that was covered by a TV. Overall the color in the room was grey. 

This is what the room now looks like. 

This was the color of the dining room. I would say this room has had the most significant transformation, as it needed a ton of work. Wallpaper removal and then fixing the walls because the wallpaper removal revealed that the walls had a stucco texture. 

The new look! This Medici Ivory color just brightens up the whole house and makes it look much warmer. 

I snapped this photo because it shows the consistency in wood color. This is important, because every room has a different wood grain. So unless it is stained correctly, the rooms looked very disjointed before. 

While waiting on the patio today, I found a woodpecker at our feeders. It was a long day. I don't do well with waiting around, I much prefer to be active and doing something. But I knew my presence was necessary, as today was the final day for the painters. The lead painter returns in August to do final touch ups and to finish our laundry room. The laundry room is on hold until electrical work is done in about a week.

We have had the painters for 16 days straight. I am looking forward to having our space back, because we literally couldn't be inside the house while they were working. 

Thursday, July 29, 2021

Thursday, July 29, 2021

Tonight's picture was taken in July of 2005. That week, we took Mattie to the Outer Banks of North Carolina. We did that three summers in a row. In 2005, that was our last year going to North Carolina together. I have no idea why, but life is funny that way. You get busy, or you think there is no time. I am glad we did make the time early on and that we captured these moments on camera. The house we rented that year had a lovely porch swing. A place Mattie and I liked to go in the afternoon when it was hot and humid!

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

• Number of people diagnosed with the virus: 34,725,740
• Number of people who died from the virus: 612,022

The floors are in the process of being stained! It is thrilling to see the color matching from room to room. Rather than each floor being a different color. The person working with us, Roberto, is fantastic. He really understands color, the complexities of different woods, and listening to his customer. 

Photo (left to right): Denise, Jocelyn, and Mattie

Below is a letter I received from Mattie's hospital social worker (Denise) after he died. Denise came into our lives the first week Mattie was diagnosed, as children with cancer get assigned a doctor, social worker, case manager, and typically have access to child life specialist. 

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Dear Peter and Vicki,

I have been trying to find the words to convey my sympathy and my heartbreak for the loss of your precious and very special son, Mattie. So many thoughts and memories have flooded my mind in the past two weeks, but I am still finding it difficult to express what I want to say. I realize as I sit here that the reason it is so difficult is because, I want to say something that will make it better, but there are no words that can do that. 

Instead, I will just try to share my feelings. My first remembrance of Mattie is receiving an e-mail about a family meeting to discuss a new case and the patient's name was Mattie Brown. When I first saw the name, my heart skipped a beat and I wondered why someone was sending me an e-mail about my grandmother, because she had died many years ago before I was even born. I think I have shared with you before that my paternal grandmother's name was Mattie Brown and that was my association with the name. I never got to know my grandmother, but I did become very acquainted with your Mattie and I am eternally thankful for that. 

Mattie was a very interesting child. I often marveled at the duality of his personality in that he was a wonderful, curious, creative, caring and energetic little boy and at the same time an insightful and wise "old soul." Mattie loved life and he enjoyed it thoroughly. He lived everyday fully, playing, inventing, creating, discovering, and engaging. He loved people, holding court, commanding an audience and directing the action. He had a sense of what he needed and how to get it, whether it was someone to play with, a creation to be developed, medication to ease his pain, or "quiet on the set."

I loved Mattie's creativity and artistry. He had inexhaustible imagination! He could take anything and make it something special. I love especially all of the cardboard box creations: haunted houses, elevators, and beaches. He could put a 1,000 piece puzzle together with ease, assemble any toy with just a blink at the directions and bring life to bugs, and flowers with his many scientific experiments that he enjoyed and his fascination with cockroaches is not to be forgotten. 

The seasons and holidays will not be the same without Mattie. Mattie loved both. His room was full of holiday and seasonal creations. I was in a store just last week and they had a Halloween display up and I thought of Mattie and how much he loved creating holiday decorations and decorating his hospital room. 

My favorite Mattie memory is his 7th birthday party in the child life playroom. Mattie's friends came to the hospital to celebrate his birthday. There was pizza and gifts and games and lots of staff there to celebrate Mattie. But, the highpoint of the day was when his friends arrived to celebrate his birthday. Mattie transformed from a boy with cancer with a leg in a cast and a wheelchair to just a boy. Enjoying his friends, enjoying his day! He was a gentleman and an excellent host. He was just a boy having fun, laughing, playing, eating pizza and doing the things children do. I loved and cherish that moment for him. 

Mattie did not have length of years, but he lived his life with purpose. He taught by example. He challenged us to be better at what we do, to expand beyond what we are.... to develop the fullest potential of what we are created to be. He left us with a prescription for living:

1. Live your life with purpose.
2. Live fully and cherish every day.
3. Enjoy life's simplicities.
4. Walk completely in the gifts and talents that you have been blessed with.
5. Touch someone else's life. 

I realize that I have not talked much about my feelings. I am still numb. I have not missed a day since Mattie's death that I haven't said, "I wasn't prepared, I thought he had more time." I know that I miss him and I miss you all. 

You are both excellent parents. You loved Mattie completely and unconditionally. You left no stone unturned to get the best care available to him. You supported him and walked with him every step of the way. He trusted you implicitly and loved you completely. He was all that he was because of you. Mattie was your gift that you shared with the rest of us. 

Master Builder

Artistic and Creative

Talented

Tough

Insightful

Energetic

Boy

Roach Lover

Old Soul

Wise

Negotiator

Wednesday, July 28, 2021

Wednesday, July 28, 2021

Tonight's picture was taken in July of 2004. Mattie was two years old and we took him to the Outer Banks of North Carolina. This was his second trip to the beach. That day, we walked up Jockey's Ridge, the tallest active sand dune system in the eastern United States. It was quite an experience in the heat, but Mattie did it and enjoyed the process. 

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

• Number of people diagnosed with the virus: 34,659,532
• Number of people who died from the virus: 611,728

It was another busy day of running back and forth between DC and Oakton. I met with the painting company manager and things are moving along. They have agreed to come back in Mid-August to do touch ups, as the sanding of floors is chipping away some of the paint. But we are still in agreement that painting had to happen first before floors. Because once the floors are done, it would be very difficult for the painters to use ladders and scaffolding without damaging the sanded and stained floors. 

As I mentioned in a previous blog, I spent last weekend, cleaning out the walk-in closet in Mattie's bedroom. In the process of doing that, I came across several beautiful notes and letters that were written to me after Mattie died. To me, they are incredibly touching and meaningful reflections that I will be holding onto indefinitely. 

Since this is Mattie's blog, I feel it is only fitting to capture these letters here. So I will be sharing them this month. The first letter which I typed below came from Mattie's speech therapist. I brought Mattie to Donna early in his life, around 18 months old. 

I was encouraged to see Donna by Mattie's pediatrician, who was concerned about Mattie's LACK of verbalization and small vocabulary. We ruled out a hearing problem, and I personally felt that this was just Mattie. That he was going to talk when he was ready, and in my heart of heart's felt he did not have autism. Yet I took his pediatrician's concerns seriously and took Mattie to see Donna. 

What some people may not know is that Mattie was a bundle as a toddler. He had multiple tantrums daily. Not small ones, but full blown explosions, which I found scary and exhausting. In addition, Mattie could be physical and would kick, scratch and bite. NOT me, but he lashed out at other kids and adults. Making it impossible to go to any mommy and me classes or have playdates. In fact, this behavior is what caused him to be asked to leave his first preschool. 

By the time we got connected with Donna, I was exasperated. Some days I would come into their therapy session crying, as I would report the tantrums to Donna. For the most part she never saw Mattie acting out, until one day in the waiting room, Mattie exploded. It was so awful that multiple therapists came out and separated Mattie from me. They brought him in the back to calm down, and gave me time to recompose myself. After which, Donna came back out and basically said..... 'is this what you are dealing with daily!?' I of course said 'yes!' It was Donna who understood what the issue was.... Mattie had sensory integration disorder and needed the help of an occupational therapist. Frankly I thought that sounded bizarre, but I did comply and got connected with Kathie, Mattie's long-time occupational therapist. Both Donna and Kathie were in Mattie's life for two years straight! Each week I brought him to therapy. In fact his occupational therapy sessions were twice a week, and speech once a week. In between sessions, I did therapy homework with him. Guess what? It worked! By the time Mattie got to kindergarten NONE of his teachers knew that he worked through any issues! I am a firm believer in early intervention! Any case, I think it is important for you to know all of this, as it helps to put Donna's letter below into context!

September 20, 2009: From Donna (Mattie's speech therapist, pre-cancer)

Dear Vicki and Peter,

I sit here at the computer this morning, as I have for the past week since learning of Mattie's death, and I don't know what to say. I don't know how to offer words of comfort to you after losing your wonderful son. I feel out of my league here. And it is a strange feeling for me. I always feel like I should be able to say something wise to help parents. Instead, I will just share some thoughts. 

I was able to come and help out at the fundraiser at SSSAS this summer. I was literally amazed at the circle of support for you and your family. You were surrounded by so much love and overwhelming support, like one huge family and I almost felt like an intruder into your world. Being there reminded me of the endless goodness and kindness of people.

I read your blog each day and tears stream down my face. You are right, no parent should ever lose a child. My heart aches for you as I can imagine no greater pain than what you are experiencing. And yet you go on in such a courageous way, openly sharing your life experiences with Mattie. The photos bring a smile to my face through my tears, especially the young ones of him around two years of age, as it reminds me of when I met him. I re-read my early notes of him yesterday, of when you brought that feisty little cherub to my office. I described the wild temper tantrums, and the almost love-hate relationship he had with me, moving from screaming and pulling my hair to smiling and hugging me. And I remember it like it was yesterday. Despite having seen hundreds of kids since that time, my interaction with Mattie has always stayed clear in my head. There was just something about you and Mattie together that pulled at my heart. There was so much love between the two of you, and you so wanted it to be easier for him. When I was lucky enough to have you return with him in the summer of 2008 (for a reading camp---weeks before being diagnosed with cancer), it gave me two snapshots to lock forever into my heart.  

So thank you for coming into my life, and for letting me get to know you and your deep love for your beautiful Mattie, who will never be forgotten. 

Tuesday, July 27, 2021

Tuesday, July 27, 2021 -- Mattie died 617 weeks ago today.

Tonight's picture was taken in July of 2009. Mattie was home between treatments. His art therapists made a special plastic bin for him. They called it Mattie's ocean. Inside the box they created things that looked like water and waves and there were all sorts of magnetic fish inside. They then gave Mattie a magnetic fishing pole so he had to work his arms and body. In other words it was a creative form of physical therapy, as they designed the activity around the specifications provided by Mattie's art therapist. To this day, I still have this bin in my closet. Now I use it to store many of Mattie's mementoes. 

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

• Number of people diagnosed with the virus: 34,577,203
• Number of people who died from the virus: 611,254

I have been working with the flooring professionals on selecting the new color for our floors. These were the original wood floors to the house. We just had them sanded and they will be stained and sealed so that all the floors (despite the different kinds of wood all over the house) on the first floor will match in color. Certainly the floor looks lovely in their natural wood state. But personally, I prefer a darker wood stain. Something that has more red than brown tones. I finally selected a color, it is shown in the middle column, on the top. It is a combination of red mahogany and chestnut. The other reason why I can't go with a natural color is because all the floors have a different type wood.... either maple, cherry, or oak. When you sand all these woods and then seal them naturally, the woods will look completely different in tone. Therefore the first floor of our house could never remain as a natural wood color, because each room would look completely different. Which is why I needed to pick a stain, and then they will doctor the stain for each wood type, so that all the floors on the first floor will match in color at least. 

We had a professional landscaper come over today because we have several trees in need of care and the weeds in our flower beds are out of control. Literally we can pull weeds out and a week later they are back with a vengeance. It is very infuriating, so I know I need the help of a professional. He told me there is no way Peter and I could maintain this property on our own, unless we both had NOTHING else to do all day long. 

While walking around the property, we came across this hive like structure in the magnolia tree. A very live and active hive, or wasp nest. 

I called our exterminating company about this nest as I do know that some bees are protected by the state of Virginia. Wasps aren't one of them. So someone is coming over on Thursday to remove the nest for me. Everyone has a different philosophy about either removing or keeping these nests. Given I was recently stung and my arm blew up and turned bright red for a month, I am opting on removing the nest. 

But I have to tell you the whole structure is fascinating. It is comprised of wood pulp and bee saliva. I am not making this up. Check out this four minute video below on wasp nests. It is actually fascinating and truly a miraculous type of structure. 

Monday, July 26, 2021

Monday, July 26, 2021

Tonight's picture was taken in July of 2009. Mattie's child life specialist bought me a birthday cake, so that Mattie could celebrate my birthday! A very lovely gesture, as in the past Mattie and I would bake birthday cakes together to celebrate occasions. I remember this moment in time as if it were yesterday. Of course in that moment we had no idea that Mattie's cancer was metastasizing.  

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

• Number of people diagnosed with the virus: 34,520,513
• Number of people who died from the virus: 610,915

It was a nightmare of a day! What didn't we do today? We had a Fairfax County inspector come over to check out our water heater installation. Of course it wasn't done correctly and Peter had to fix it on the spot in order to pass inspection! Mind you multiple things are happening at the same time. We had the painters all over the place, the inspector, a surveyor marking our property lines, the wood floor restorers, closets systems being freight dropped in our garage, and this is only some of the stuff. I have no idea how Peter is working while also juggling this with me. In addition, I had a virtual call with my neurologist this morning. It was hysterical, he is talking to me while contractors are all around me! Needless to say it is almost 8pm, and I am strung out. 

This sink came out of our powder room. I do not like it one bit and it weighs a TON. It took four people to carry it outside. Since we did not know what to do with it, we put it on Next Door for FREE. Within minutes we had five people who wanted it and a couple came and picked it up today! Wonderful. 

The wood floor company is outstanding. Very professional team and their machine is great. I see very little dust from their sanding process!

The key is trying to find a wood stain that will work on all of our floors. It is a challenge because on the first floor we have maple, oak, and cherry! All woods with different characteristics and tones. 

Mid-day I drove to Alexandria as I met up with a few friends to celebrate my birthday. It was as hot as an oven outside and by the time we finished, I felt like I needed the emergency room. As I have an over the top migraine, with eye pain, and now jaw pain. Bordering on excruciating pain. Because I am not used to driving between Oakton and Alexandria, I got LOST on the beltway and landed up in Maryland twice. Not a good day. 

After lunch, I drove back to the house, and met up with Peter and the roofing company. Of course there are major issues with the roof too. We just can't catch a break!  

Finally back home in DC. It is pouring and thundering and SOMEONE is NOT happy!

Sunday, July 25, 2021

Sunday, July 25, 2021

Tonight's picture was taken on July 25, 2009, the last birthday I celebrated with Mattie. That day, Peter's parents and Mattie constructed a lighthouse birthday card for me. As they all knew how much I loved lighthouses. In fact that card was to resemble Bodie Light in North Carolina, which we took Mattie to several times. 

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

• Number of people diagnosed with the virus: 34,436,400
• Number of people who died from the virus: 610,886

Today may have been my birthday, but it did not feel that way. I was in no mood! Spent most of the day sorting and organizing our walk-in closet at our townhouse in DC. I truly do not like change, even on a good day. But I am comfortable in our townhouse and I know where everything is, I have a system that has worked for years. Moving upsets my apple cart on many, many levels. Though the house is much bigger than the townhouse, in my mind, I can't even picture where my things will go! I am so used to them in the walk-in closet in Mattie's room. So this not only irritates me but makes me anxious. I have spent two days working on that closet, and have made excellent headway. I have thrown out two very large garden trash bags of paper and things, and have set aside five garden sized trash bags for donation this week. I figure tackling a closet and several drawers a little at a time is the only way I can manage this!  

Peter went to the house today! Here is another before and after photo! I happen to be a non-blue person. I don't have anything against blue per se, it just doesn't make me happy. The former owner selected colors that just do not go with my color palate. Starting with her very dark dining room. The walls had wallpaper and as you can see the chair rails and molding had a darker blue color. You should have seen how dark this room was with the curtains on the windows. When the painters removed the wallpaper, there was acrylic paint textured by plastic wrap all over the walls. It looked like metallic stucco. Honestly it was horrid, and the painters told me that was an expensive technique. Either case, we paid for both the wallpaper to be removed and for the walls to be brought back to their smooth texture. This room was a show!

Here is the after photo, with the walls smooth and painted with Medici ivory. The chair rails and moldings all have a semi-gloss of extra white. The color just brightens the room!

Meanwhile, in the process of cleaning out, I came across the programs we created for Mattie's funeral and celebration of life ceremony. Naturally I kept them, but I have to say that much of Mattie's funeral was a blur. 

Inside of the funeral program. What I do remember is that the church gave me a hard time finding a date for the service. That was until I got a hold of my friend Jim, who is a priest. I met Jim at the George Washington university, and he gave me my very first client, as he supervised me at the Newman Center on campus. Jim is a gifted priest and has a significant position within the church system now. So though he was in Pennsylvania when Mattie died, he came back to DC to preside over Mattie's  funeral. Jim also baptized Mattie in 2002. 

Mattie's celebration of life program. 

Inside the Celebration of Life program. I remember arranging for a children's room at the reception. As many of Mattie's friends were 7 years old, and we felt it was important for them to have a safe space to be children and to remember their friend in their own way. I reached out to several of my graduate assistants, and they coordinated this space and were on hand if something arose for the children. 

Mattie's funeral and celebration of life were held about a month after he died. I literally needed all that time, to pull it together both physically and emotionally. 

This illustrates Mattie's whimsy! While at the hospital, he colored his socks and added googly eyes! I have about 4 to 5 plastic bins of Mattie items, mementoes, clothes, and art work. One thing I feel good about, is that these bins still are meaningful and relevant to me today! Which means that my sorting and organizing over the years was well done. 

I came across these laminated cards today. The top blue and yellow cards were our pool passes. As a faculty member of the university, this gave me pool privileges. It was at the university's pool that we taught Mattie to swim. 

The bottom two cards came from Mattie's preschool. The school assigned the children a shape that started with the same first letter of a child's name. So Mattie's first year in preschool he was Mattie Moon. The second year, he was Mattie Magnet! Who knew that Mattie Moon was going to have even more significant meaning to us beyond preschool!