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



August 6, 2021

Friday, August 6, 2021

Friday, August 6, 2021

Tonight's picture was taken in August of 2002. Mattie was four months old. Around a month before a friend of mine from college mailed me this large entertainment saucer. At first my reaction was WHAT?! I did not understand why something so large and busy was needed for such a little person. Don't worry I caught on quick! Mattie loved the ability to stand on his own, twirl around in the seat and of course make noise. 


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

  • Number of people diagnosed with the virus: 35,545,487
  • Number of people who died from the virus: 615,836


Another busy day on the "farm." We had a vanity delivered today for our powder room. The vanity in the photo is the one we gave away for free on Next Door. The catch was someone had to pick it up. It took four men to carry it out of our house, as it is close to 400 pounds. I am thrilled it is gone and we are replacing it with a white vanity. Thankfully Peter is handy and he is installing the sink himself. 

I have been to Bed Bath and Beyond three days in a row. I am trying to get things we will need for the house, which will make moving in a lot easier. Peter and I did a Lowe's run, and then we worked several hours at the house. That horrid wood stain and sealant smell may do me in! It is so bad that even laundry being done at the house smells like wood stain! 


Meanwhile, Sunny has been lying low all week. We followed the vet's advice and gave him his pain meds all week and cut down on physical activity. It paid off, he is definitely on the mend and I know he is looking forward to seeing the backyard this weekend!

August 5, 2021

Thursday, August 5, 2021

Thursday, August 5, 2021

Tonight's picture was taken on August 5 of 2009, the day we learned that Mattie's cancer diagnosis was terminal. By this point, Mattie was off of chemotherapy for only 6 weeks. His doctors thought he would have time to recover, regain his ability to walk, and return to school that Fall. We all knew Mattie's cancer would return at some point, but we did not realize how soon it would be. While off of chemotherapy, Mattie complained of pain and refused to eat or drink anything. He was surviving only on IV fluids, which he received around the clock. His doctors did not want to order more tests, as they felt Mattie was manipulating me, developing an eating disorder, and was addicted to pain meds. Quite a set of mental health issues for a 7 year old! In any case, I demanded tests that day. We started with a more inexpensive one... a sonogram. That did not go well, as I read the techs face immediately. The sonogram led to a CT scan and this confirmed our worst nightmare. Mattie's cancer was in his lungs and abdomen, making his prognosis terminal. While waiting for the results, Mattie and I went to the hospital garden. On the way to that area is this elephant statue, created by the art therapy department. In fact, Mattie's nurse, Kathleen, created a Curious George tile for this elephant that is a tribute to Mattie!

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

  • Number of people diagnosed with the virus: 35,407,683
  • Number of people who died from the virus: 615,215


It seems rather fitting that we officially put in our termination of our lease request today. August 5th is a sad day already for me, but leaving our home of 26 years is right up there for me. The two of these things together are NOT a good combination. 

On certain occasions I re-post 'My Dearest Mattie' letter to the blog. I wrote this letter after Mattie died and shared it at Mattie's celebration of life event. Within the letter it specifically talks about August 5, our trip to the hospital rose garden, and how Mattie found a way to get from his wheelchair into my lap to hear the story about the day he was born. Mattie typically requested to hear that story during tender moments, or during times of uncertainty. He may have been only 7, but he understood the ramifications of that day's testing, and the stress for waiting for results. A day and a boy never to be forgotten.

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

My Dearest Mattie,


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

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

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

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

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

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

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

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

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

August 4, 2021

Wednesday, August 4, 2021

Wednesday, August 4, 2021

Tonight's picture was taken in August of 2002. Mattie was four months old and was beginning to eat rice cereal. It was actually something Mattie loved! However, Mattie hated his high chair. So most times I fed him in his car seat or on the couch. He eventually graduated to the high chair, but it wasn't his favorite spot. Most likely because he felt constrained. 


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

  • Number of people diagnosed with the virus: 35,314,746
  • Number of people who died from the virus: 614,769


It is almost 7pm, and I have been running around all day. Either doing chores, or meeting with contractors. As of today, our wood floors are now done. We can't put rugs or furniture on them for two weeks. The crew returns on Monday to beginning sanding and staining our staircase. I so wish this was all done at one time, but because we were trying to accommodate the painters who were using the stairs, we delayed the process. Therefore, the wood dust and horrid oil sealant smell will remain in our house for the next several weeks. It smells so toxic, it is hard to be in there for long.

Of course, the sanding machine caused divots in the paint. So our lead painter is coming back in about a week to correct these areas. We are making progress, but it isn't fast enough in my book. It is very difficult to focus on our home in DC (which needs to be organized, things need to be donated, and of course I still have to pack up things) when I am managing what is going on at the house daily. I am sick of the 30 minute drive back and forth each day too! I feel chronically tired, migraines daily, and no in the best of moods. 

August 3, 2021

Tuesday, August 3, 2021

Tuesday, August 3, 2021 -- Mattie died 618 weeks ago today. 

Tonight's picture was taken in August of 2003. Mattie was 16 months old and I took him to Los Angeles to visit my parents that summer. That particular day we went to the LA Zoo. I honestly can't remember visiting this Zoo when I lived in California. Mattie introduced me to many activities and places I had never experienced before!


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

  • Number of people diagnosed with the virus: 35,189,465
  • Number of people who died from the virus: 614,120

For the past week, these metal shelves have been sitting in front of our house. Today I walked over to them and saw they have a FREE sign on them! I asked other neighbors if these shelves were theirs, and then deduced that the shelves belonged to the house next to us which was for sale. The previous family must have carted the shelves to the curb and just left them there! Delightful!

I was tired of seeing them each day, so I literally snapped a photo of them and put them on Next Door for free. Within 25 minutes, someone contacted me and said they would pick them up today! I am not sure why the previous owner did not advertise these shelves? How on earth was someone going to know they were available?

Given I currently live in a complex with over 800 units in Washington, DC, I am used to being the responsible one. For reporting issues, getting involved and helping people, and the list goes on. I was hoping to move into a neighborhood with others like me, but I can see my voice and inserting myself will be needed there too!

Here is another beautiful letter I received from friends after Mattie died. Their daughter and Mattie were in preschool together. Ironically, reading this letter now reminds me of that moment in time. As this family gave Peter and I pedometers after Mattie died. Not much resonated with us after Mattie died, but the pedometers and their message did. They got us out walking, interacting with nature, and the pedometers gave us numerical feedback that we were moving, alive, and part of the world around us. For years, I always had a pedometer on me. I got used to tracking my steps and like the letter below describes, counting my steps empowered me and put me back in control.

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

Dear Vicki and Peter,

I have been guilty of being a silent but faithful follower of your blog. Our house has lived the ups and unfortunately too frequent downs of Mattie's courageous battle. We have shared so many tears at our keyboard at the Pisano household thinking and praying for Mattie and you. However, I need to step out beyond being a faceless number of your website visitor counter just to share a story, a gift, and our love for Mattie and you. 

November 23, 1982, is a day I will not forget. It was the Saturday after Thanksgiving. I was 15 years old. My 14 year old sister headed off to basketball practice. She never came back. She died suddenly of a heart aneurysm. My two older brothers and I were shocked. My parents, losing their only daughter, were despondent. She wasn't only my sister, she was my best friend. 

How people grieve and deal with such loss is different for all. My parents, like you, were devastated. I was a sophomore trying to fit into high school and probably repressed a bunch of my sorrow. I wish technology was more advanced (and we had more money) back then and we had the documentation via photos, video, etc to capture her voice, mannerisms, and other aspects that the passage of time cruelly erases from memories. You are so fortunate to have these photos and videos of Mattie for the future. 

My sister's name was Nancy. Hence, when Jane became pregnant I was hoping for a girl to name after my sister. Our daughter Nancy is named after my sister. The naming of Nancy is a little, but important way for me to honor and remember my sister. I miss her as much today as I did 27 years ago but recognize that I can grieve and live at the same time. Your loss brings back so many of the same feelings I have had. 

I am not here to say that everything will be okay in one month, one year, or 10 years. This unbelievable and senseless loss will be with you but it will change to different forms over time. You will get through this. 

We had bought the enclosed pedometers for you in August but never got to you. I think the pedometers are something that can be used by you for some empowerment and fresh air. Basically, you have lived with life seemingly beyond your control. You were reacting and being pushed around by Mattie's cancer. Pedometers empower you. It is you who controls how many steps are going to be on it. Today 1,000 steps. Tomorrow, 1,250. It is something, albeit minor, that at the end of the day is in your control and power. And the beauty of walks, at least for me, is the ability to clear my mind, notice new things outside and develop renewed appreciation for the beautiful and interesting things in life. I haven't included sneakers and mittens but hope the pedometers gives you something to chat about and some challenges for the daily routines you have. 

Again, I am not eloquent enough to find the right words or poetry to capture all that you are facing. Know that the stinging and bitter emotions from the death of a loved one do dissipate over time. Like the ticker in a pedometer, the struggle for understanding and comfort after this loss takes one step at a time. 

Please let Jane and I know if there is anything we can do for you. We look forward to donating to the Mattie Foundation when it is up and running. With most heartfelt wishes, Paul Pisano



August 2, 2021

Monday, August 2, 2021

Monday, August 2, 2021

Tonight's picture was taken in July of 2003. That day we were taking Mattie to see the famous Cape Hatteras Lighthouse in the Outer Banks. Mattie was very excited to be there and to be walking. The majority of children walk by 12 months of age. Not Mattie! He had his own time line for things. So in all reality, when this photo was taken, Mattie hadn't been walking independently for long. Yet by that point he was dragging me along!


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

  • Number of people diagnosed with the virus: 35,106,760
  • Number of people who died from the virus: 613,615


Given the kind of day we had yesterday, on top of the wild month of activity, I felt very debilitated today. Bordering on not functioning. Sunny is still limping but hasn't gotten worse. I do think the gabapentin is helping. The funny thing is I took this nerve pain medication years ago for migraines. For me it did absolutely nothing, I am glad it works for Sunny. It keeps him calm and relaxed, which is necessary otherwise he would want to WALK!!!


This afternoon I went to the house to check on the progress with the floors. Another sealant coat went on the wood today, and sure enough the hateful smell was back full force. I happen to like shinny wood floors, but the company has recommended a satin finish instead of a semi gloss sealant. Mostly because they tell me the higher the gloss coating, the more likely I will see any scratches, especially from Sunny. This is the current look of our family room. 
This is the dining room, and I am beginning to be pleased with the transformation of the house. 
The living room! Which has undergone a massive transformation from its dark brown color. 
This is our front hallway. In about a week, the stairs and banister will be sanded and stained to match the floors. However, the tile in the front hallway has returned to its original ivory tone. When we bought the house the tile instead looked grey and the grout in between was black. Basically very dirty, in need of a good cleaning. 




August 1, 2021

Sunday, August 1, 2021

Sunday, August 1, 2021

Tonight's picture was taken in July of 2003. This was Mattie's first trip to the Outer Banks of North Carolina. That day we took him on a tour of the Currituck Lighthouse. Back then, a child could ride up on a parent's back! It was a hot and humid day and Peter climbed up very narrow and winding steps of the lighthouse with Mattie on his back. Now a days, this wouldn't be allowed! If you don't walk independently, you aren't getting to the top!





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

  • Number of people diagnosed with the virus: 35,001,589
  • Number of people who died from the virus: 613,223


It was quite the day! Peter and I worked the whole day at the house. While I was cleaning, Sunny was in the backyard. However, it began to rain, and I figured it he should come inside the house, given I know he hates thunder and lightning. However, Sunny's new trick is he doesn't come when called. He wasn't like this in the city, but out in the backyard, he plays tricks with us. Needless to say it was pouring and I wasn't going outside to check where he was. Given he wears a GPS tracker now, I knew he was in the backyard. 

When Peter got home from running to Home Depot, he went looking for Sunny! It turns out that Sunny dug several holes in the dirt and found a way to get under the shed in the backyard. Mind you this is a very small and narrow space, and Sunny is 70 pounds. A big fellow in a small hole. Peter got him out, but Sunny was covered in mud and was limping. He was an absolute mess. Given the fact that Sunny needed knee surgery in April of 2020, I panicked. I figured he injured himself again. 

I called around to all pet emergency rooms. You got to love it, many of them will tell you they are full to capacity and CAN'T help you! Can you imagine a hospital doing this to a human? It shouldn't happen to any live creature who needs immediate medical attention. Any case, I called the center in Vienna who did Sunny's surgery last year and convinced them to see Sunny today on an emergency basis. They ran blood work and took x-rays, $1,200 later, we came home with pain killers and at least have the peace of mind knowing that his blood work is good and he did not break anything. Especially happy to know that the metal plate in his knee is perfectly intact! I am grateful Sunny has pet insurance! We never did this for any of our cats, but when we got Sunny a friend of mine told me pet insurance is VERY needed! She is 100% correct. 

Peter and I got back to DC with Sunny after 10pm. Totally long day and did not go at all like we expected it to!

July 31, 2021

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. 

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

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. 

July 30, 2021

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. 


July 29, 2021

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. 

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

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

July 28, 2021

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.