Saturday, September 14, 2013

Saturday, September 14, 2013

Tonight's picture was taken in September of 2007. We all went to Nat's park that day together. I am sure someone gave Peter these tickets, since going to watch baseball games was not something we did as a family. Though Peter loves baseball, Mattie and I were more interested in the people watching and the stores within the Park. So we were a great pair together, but I am sure for Peter, we weren't the best of company on a game day. Needless to say, both of my boys had their Nat's hats on and were full of smiles, most likely for different reasons, but they were happy to be together. Regardless of what was going on around us, Mattie was always a priority for Peter. Mattie trumped baseball, golf, going out with friends, and the list could go on. I never had to remind Peter of his role and responsibility as a dad. It just came naturally to him.   


Quote of the day: Trees are as close to immortality as the rest of us ever come. ~ Karen Joy Fowler

Today we visited Mattie's school and also toured around Alexandria, VA in order to see a live Yellowwood Tree, a Red Maple Tree, and a Sweet Gum Tree. Seeing the actual trees was VERY helpful. After seeing the Sweet Gum tree, we both were able to eliminate it as a possible candidate for a memorial tree. I love the Red Maple tree, but there are actually many trees like this quite close by to where Mattie's tree sits. So from that perspective it would blend in and not be unique if we selected a Red Maple. So Peter and I officially decided on the Yellowwood Tree. It will be unique just like Mattie, it will produce flowers in the spring (which is unusual for its location on campus, since it is surrounded by non-ornamental trees), and in the Fall the tree's leaves will glow GOLD/YELLOW. Yellow is one of our Mattie Miracle colors (since Mattie loved the SUN) and it will also serve as a reminder of childhood cancer awareness in the Fall. We took one last photo today of Mattie's Memorial Oak Tree. This tree lasted three years before it died. I know some could think there is meaning behind a memorial tree dying, in fact, some of you have expressed this to me. I am not sure I want to read into why Mattie's tree died, other than, like Mattie, it too contracted a disease. Diseases can kill and perhaps this is the moral message. Some things are beyond our control, so while alive and healthy, one needs to appreciate life and the opportunity this bestows upon us.

In front of Mattie's tree, sits this memorial plaque. On May 27, 2010, during a tree dedication ceremony, Mattie's tree became an established living monument on his elementary school campus. As the plaque indicates, the tree was donated to the school in Mattie's honor by the parents and children of his class (2020).

Peter brought big loppers today to the campus to help snip off several of the higher branches which we could not reach even on a ladder. These higher branches held the beautiful acorn shaped birdhouse you see in this photo and butterfly wind chimes that sound angelic when the wind is blowing. Peter's parents gave us the acorn shaped birdhouse and each year we are sure to find a nest inside of it. Birds love Mattie's tree and it is quite clear from looking inside the birdhouse, that a baby bird hatched within it. The photo illustrates all the items we removed from the tree today and they will now await their new home upon a Yellowwood. We have placed the birdhouse out on our deck for the time being since the nest inside the birdhouse is too beautiful to pull out and clean. I am sure our sparrow and finch friends will be checking out this new addition!

Friday, September 13, 2013

Friday, September 13, 2013

Tonight's picture was taken in August of 2007. We took Mattie to Los Angeles to visit my parents and while there we went to Travel Town, which is part of Griffith Park. Travel Town is an experience, especially if you are a train buff. Trains of all kinds are on display and many of which you can climb aboard and walk through. Mattie loved playing with Thomas trains, so when he actually got to see real trains, many of which are historic, he was very excited. I snapped a photo of Mattie and Peter as they explored this train, this was just one of many they jumped aboard that day.



Quote of the day: Turning up our light in the presence of those whose light is dim becomes the difference that makes the difference. ~ Eric Allenbaugh


I want to thank so many of you for emailing me and also posting comments on Mattie's blog regarding the tree. Based on the responses I am getting, I see you all share in this difficult decision. There really isn't a winner or number one choice from our poll. I would say I have almost equal ratings for the Yellowwood, Red Maple, and Sweet Gum trees. I did speak to a tree expert at Mattie's school today, and after talking with him, I have eliminated the Sweet Gum tree. The school selects a hybrid that doesn't have the star shaped leaves or the spikey fruits hanging from it. To me, that is what makes the Sweet Gum priceless (or priceless from Mattie's perspective). So it seems to me, we are debating between the Red Maple and the Yellowwood. I learned that the school has several other Red Maples on the campus but NO Yellowwood trees. This could be potentially the first Yellowwood on the campus. As someone wrote to me yesterday, the beauty of the Yellowwood is that it blooms in the spring and in the fall it turns golden yellow (symbolizing Childhood Cancer Awareness month). Any case, I was given a few local addresses that have a Yellowwood tree in their yards, so I will be able to see a live example for myself this weekend and then try to come to some conclusions. But since so many of you weighed in on this with me, I wanted to keep you up to date on the tree.

I am rarely on Facebook, it is not a form of media I enjoy exploring. I am not sure why. Maybe because if I want to connect with friends, I rather email or text message them directly. With that said, I certainly think there are many good reasons to turn to Facebook.... to see photos, get updates on friends and family, and even to support various social causes. While visiting one Facebook page this week, I noticed that my posting about the GOLD campaign, which I wrote about on the blog earlier in the week, was mentioned. As a recap, September is National Childhood Cancer Awareness month, as such, many people around the Country are promoting GOLD ribbons and lights. Gold is the official color of childhood cancer.

The fact that my posting was on Facebook was not what caught me by surprise. Instead it was the response that someone had to my posting that shocked me. This was a person who works in the pediatric oncology arena. Her feelings were that the GOLD campaign is NICE but really isn't of substance. That we can't waste our time with things that aren't substantive, but should instead focus upon all the important strides and achievements that have been made to date. Besides rarely being on Facebook, I also rarely respond to postings that I see. But somehow this merited a response. 

Strides and achievements to date in childhood cancer  ......... UMM..................
Well let me stop and think about this. This is where we are at, you tell me if you think these are strides to celebrate:

1) kids with cancer are treated with drugs from the 1950s and 1960s
2) only one new drug (well technically two, but only one of them is an anti-cancer treatment agent) has been approved by the FDA for childhood cancer in the last twenty years
3) the National Cancer Institute spends 4% of its funding on childhood cancer
4) each day around four children die from childhood cancer
5) yearly 15,000 kids are diagnosed with cancer
6) of the 350,000 childhood cancer survivors who are living in our Country around 75% contend with life altering side effects from the treatment
7) cancer rates have increased 0.6% every year since 1975, which is an overall increase of 21% in the last 36 years

How do you like these accomplishments to date?????!!!! This is pathetic and through my lens, a mom who lost a child to cancer, this speaks to a lack of awareness of this disease in our Country.

Am I personally doing a GOLD campaign, wearing gold, and promoting this through Mattie Miracle? NO I am not. Because as the president of the Foundation I have to pick my battles and invest my time in activities that solely fulfill our mission. Yet with that said, I admire those parents and advocates in our Country who are out there and beating the pavements to bring awareness to a national health crisis. A crisis that gets talked about by politicians but at the end of the day, really gets swept under the rug. Acknowledging September as National Childhood Cancer Awareness month has to mean something and those who wanted the White House glowing in GOLD lights this month were doing just that. They were trying to get our Nation's leader to make a statement, a statement he freely makes in October with breast cancer. Sure, childhood cancer has to be more than just a gold campaign, but unfortunately we live in a world that without a campaign, media attention, and a ton of funding nothing can get accomplished. Don't down play those who are out there spreading the GOLD message around, we all have to do our part, and frankly from where I am standing true change and achievement occurs through such grass root efforts.  

I end tonight's posting with the last orange tie of the week. This concludes Tim's Orange Tie campaign for this year. Five days of orange ties in Mattie's honor was a wonderful tribute as we remember him at this time of year.


 

Thursday, September 12, 2013

Thursday, September 12, 2013

Tonight's picture was taken in September of 2008. Though Mattie's PICU room was the size of a postage stamp, we accomplished a lot in there! Dancing even occurred there, as you can see from this photo! But Mattie wasn't dancing to just any song. That day we received a special song that was composed just for Mattie. It was sent to us electronically by the Peru office of the company Peter works for. Peru wanted to show their support of us! Several the folks in the Peru office had their own band, so they got together and wrote a song called, My Little Child. I can still hear this song in my head today, and apparently when Mattie heard the song it caused him to sway his body and dance. It was a priceless song, an unforgettable moment, and it brought us much happiness that day!


Quote of the day: Legacy is not what's left tomorrow when you're gone. It's what you give, create, impact and contribute today while you're here that then happens to live on. ~ Rasheed Ogunlaru


In May of 2010, eight months after Mattie died, his class raised money and dedicated a beautiful oak tree to Mattie's school in his memory. We visit this memorial oak tree on holidays, special occasions, and anniversaries. We would be lost without this tree because it gives us a space in nature to reflect on Mattie's existence and by decorating his tree with each special occasion, it captures the attention of others and causes them to take notice. To us, this is NOT just an ordinary tree. Back in 2009, when we were working with Mattie's school to select a tree, we chose an oak tree. The oak has great significance. Mattie LOVED acorns. He collected them and actually gave them to people as gifts! He loved looking for the perfect acorn with its cap on it. However, oaks also became important to him because he quickly deduced that his tent moth caterpillars that he brought home each spring (he would find and collect them in his preschool and elementary school's playground) ONLY ate oak leaves. So the natural choice in 2009, when asked what kind of tree Mattie would like was.... an OAK!!! But Mattie's school is located in Alexandria, VA, and Alexandria is susceptible to several fungus which have been known to decimate oak trees. So we could plant another oak, but we have been presented with three other tree options today.

Mattie's school would like to replant a tree this Fall and have thoughtfully told me that the new tree will be the same size as the current tree being removed. So this won't be an immature sapling going in. Picking the next tree for Mattie is more complicated for me for some reason. The three options are: 1) Yellowwood, 2) Sweet Gum, and 3) Red Maple. I have NEVER seen a yellowwood tree in my life, or at least I don't think so. It is a rare tree to the north east, which may explain why I am not familiar with it. The Sweet Gum trees are ALL over Roosevelt Island. I did not connect the dots until I saw a photo of the fruit that falls from these trees. Finally the Red Maple, is a very common tree. Most of us could easily identify it.

I have included photos and a description of each tree below. Also my thoughts on each tree are in orange. If only the blog had a feature where I could take a poll and have my readers vote on a favorite tree. I would be curious to hear your opinion, if you would like to share it with me. Which tree would you choose and you feel represents Mattie? You can let me know by either posting a comment directly to this posting (just click on the comment link) or just email me (Vicki@mattiemiracle.com).

Yellowwood Tree (considered one of the rarest trees in Eastern North America) is native to the Southeastern United States. It is a medium sized deciduous tree that can grow on average to 33 to 49 feet tall. In the fall, the leaves turn a yellow, gold, to orange color and in the spring, the tree produces fragrant flowers that resemble wisteria.

What captures me about this tree is its uniqueness, its orange/gold color in the fall, and the fact that it BLOOMS!

Red Maple Tree is one of the most common deciduous trees in Eastern North America. At maturity the tree usually reaches 49 feet. Its main characteristic is its deep crimson red foliage in the Fall. These trees are known to live about 150 years.

This tree screams out bold, like Mattie and red was his favorite color. But it a common tree, not that this means anything.

Sweet Gum Tree is a deciduous tree that is recognizable by the combination of its five-pointed star-shaped leaves and its hard, spiked fruits. On average the tree grows to 33 to 55 feet and can live to up to 400 years. The rich dark green, smooth, shiny, star-shaped leaves generally turn brilliant orange, red, and purple colors in the autumn.

This tree has a star shaped leaf, turns vibrant colors in the fall, and has an interesting shaped fruit.

I end tonight's posting with a photo of Tim's orange tie for day 4 of the Orange Tie Campaign. Tim has worn an orange tie each day this week in honor of Mattie's life. Tim does this the week after September 8, to acknowledge a special little person who is know longer with us. Mattie would have loved this tie, because I have NO doubt he would have said it reminded him of Nemo (a clownfish), from the movie, Finding Nemo! 

Wednesday, September 11, 2013

Wednesday, September 11, 2013

Tonight's picture was taken on the first day of school in September of 2007. Mattie entered kindergarten that year and was beginning a new school. Back then I thought it was earth shattering that Mattie graduated from preschool and had to start again at a brand new school. When I look back at these normal developmental worries, it is almost laughable. When I took that photo in 2007, I thought there would be many subsequent first days of school to come. Just like any parent! In fact, while Mattie was in kindergarten, I even bought a picture frame that had a slot for a school year photo for each year Mattie would have been in elementary school. Needless to say that frame was NEVER used. I can't be the only parent who buys such a frame, but I am definitely a person who learned the hard way about the sadness that can arise when you plan too far in advance.


Quote of the day: Time is passing. Yet, for the United States of America, there will be no forgetting September the 11th. We will remember every rescuer who died in honor. We will remember every family that lives in grief. We will remember the fire and ash, the last phone calls, the funerals of the children. ~ President George W. Bush


As our former president indicated, tragedies such as September 11th are not to be forgotten. Certainly there are a host of political statements and even undertones of cultural tensions that could be discussed regarding the aftermath of this tragedy, however, from my perspective such commentary doesn't have a home on Mattie's blog. Instead, when I reflect on September 11, I immediately am drawn to the number of lives lost, the number of families torn apart and forever changed, and I also reflect on how such terror (which took place on our home soil) has changed the way we live our lives, our freedoms, and our overall sense of security.

When I woke up this morning and looked outside our bedroom window, I could see flags all over DC at half mast. Just like it was 12 years ago, it was a sunny day in DC, with not a cloud in the sky. Yet no matter the amount of time that goes by, I can always recall where I was on September 11, 2001. At that point I was two months pregnant with Mattie, Peter was working in Northern Virginia, and I honestly did not know what was going on, if we were safe, or if Peter was going to be able to drive from Virginia back into DC. The visions of what I was seeing on TV seemed too horrific to even imagine and the fact that people had to jump out of the twin tower buildings to their death still leaves me speechless. It takes your breath away. The horror can send your mind into overdrive and yet today as I was listening to the radio and could hear the chimes that rang at the 9/11 memorial in NYC (as names of victims were read), it brought me back in time.

As I was driving to Northern Virginia today, and had to cross Memorial Bridge, I was stunned by my sighting. I did not take this photo, I downloaded it, but in essence I saw 100s of motorcyclists traversing over the bridge into the city. In a way it seemed like it was Memorial Day weekend with Rolling Thunder passing through. I must admit I was disoriented at first, but then quickly deduced this must be in support of the victims of September 11. What I appreciated about this was the instant visual, the visual of NEVER FORGET! Certainly it would be easier to bury the reality somewhere out of fear, but losing a family member, friend, or any member of our community is NEVER about forgetting. It is always about remembering.

I have been looking at all the commentary on the Internet today regarding this 12th anniversary and came across an article entitled, Social Media on September 11: Should companies observe the anniversary? We live in a world of instant information, the sharing of every thought and feeling, and where Facebook and Twitter guide our knowledge and sway our decisions. Which is a scary notion in and of itself. Yet look at these advertisements.................. Someone may have to explain to me why it is deemed insulting for a LA Laker basketball player to tweet "NEVER FORGET." This leaves me perplexed, whereas the tasteless ad by Esquire magazine is down right insulting and the apology is even more disgraceful than the ad itself. If that were at all possible. But it doesn't end there. The Marriott was giving away muffins today during the 30 minute time frame when the planes hit the twin towers in 2001. This is an anniversary of a very solemn day, and when I heard about the distribution of muffins, it reminded me of someone's birthday where you get a free treat in celebration. The muffin ad was disturbing but it had competition with the golf course offering reduced greens fees today to commemorate the day! I find all of this offensive to capitalize on a National tragedy and I can only imagine how disgusted those directly impacted by 9/11 feel.

Social Media on September 11: Should companies observe the anniversary?
http://www.theguardian.com/media/2013/sep/11/september-11-anniversary-social-media

Peter flew home today from Louisiana. I wasn't thrilled with the date of his flight. In fact, at one point I wanted to tell him to come home on September 12. But then I stopped myself because living one's life in fear isn't healthy either. I have plenty of my own fears from cancer and I sometimes need to keep them in check. However, over dinner tonight, Peter asked me whether I was concerned about him flying home today. Now that he was safely on the ground, I said YES! While we were eating dinner outside, yes in the 90+ degree, high humidity (which I love!), I spotted this green friend. This grasshopper is thrilled to be on our patio and I know Mattie and Patches would have relished in this sight. Mattie would have been intrigued and Patches would have tried to capture it and eat it!

I end tonight's posting with a photo of Tim's orange tie. This is DAY THREE of the orange tie campaign, in honor of Mattie.

Tuesday, September 10, 2013

Tuesday, September 10, 2013 -- Mattie died 208 weeks ago today.

Tonight's picture was taken in September of 2008. Mattie was home in between treatments and that day he received in the mail a foam puzzle from Peter's parents. Mattie put the puzzle together and then decided to sit on top of it. When I saw this, I grabbed my camera, and right then and there entitled this photo.... Mattie is on top of the World! I suppose back then we were all on top of the World because we thought we were going to fight this cancer and potentially win.


Quote of the day: There is nothing more beautiful than someone who goes out of their way to make life beautiful for others. ~ Mandy Hale


I received an email today from one of the mental health professionals who is working with our Foundation to craft a psychosocial standard of care. In our email exchanges I mentioned to her that Mattie's fourth anniversary of his death was Sunday. Once she heard that, she stopped talking about work and immediately responded about Mattie and his anniversary. She is a fine example of why I feel like we put an excellent core team of psychologists together to help us with this national endeavor. They have the insight of what it is like to help a child and family from time of diagnosis and beyond and as such isn't afraid to respond to the emotional content that can come up time to time in an email. As I told her, her comments really were poignant. She wanted me to know that she feels that Peter and I have done an outstanding job at channeling our grief into helping countless people. She feels this is something to be admired and yet she also feels and understands that at the end of the day this won't be bringing Mattie back, and though we keep giving, we are never going to receive the same amount of love we give out, especially the love from our child. I never verbalized this or perhaps even thought of it in this way, but at the heart of the matter she is absolutely correct. There is an emotional inequity.

I spent a good portion of my day outside in my friend's garden. She asked me a week ago to help plant some mums for her. That in all reality probably wouldn't take long, but when I see weeds, I feel the need to attack them. Today was a glorious weather day for a person like myself (humid and in the 90s) and spending several hours outside was therapeutic. Along my weeding journey, I came across this fellow. A preying mantis! We occasionally saw a preying mantis or two in our own garden, and Mattie just loved these sightings. So when I saw today's mantis, I immediately thought of Mattie.

Later today, I went to visit my friend Mary who lives in an assisted living facility. Some of you recently asked me whether I still see Mary. I may not report about these visits all the time, but Mary is my friend and I do try to visit her regularly. Mary's decline seems even more significant to me from when I saw her last. It is very sad to see someone vibrant struck down by a neurological disease. While visiting Mary today, I had the opportunity to chat with one of her nursing aides. I try to get to know the aides on a more personal level because it gives me insights into how they feel about their job and caring for older adults. Caring for a sick older adult is not easy. Mary's roommate has significant cognitive issues and doesn't like to be touched. Which is fine, expect that she needs assistance with changing clothes and so forth. As I listened to this particular aide in question tonight deal with Mary's roommate, all I could think of is.... what incredible patience. Mary's roommate was screaming at the top of her lungs and hitting the aide. But the aide never raised her voice or got upset. She remained even keeled and kept explaining what she needed to do. Certainly not all aides are created equal.

After this episode, I told her that she does important work. I said I know we under value her work in our society and it certainly doesn't pay or compensate her well. Other than with physical injuries and aches and pains. However, I said that for many of the residents she works with, they would be lost without her. They need her kindness not only with their physical needs but with their emotional ones as well. She agreed with me and she told me she loves her job and also feels honored to be able to help her patients. As Hale's quote tonight points out, there is something special about "making life beautiful for others." I saw it operationalized tonight. May we all have someone like this in our lives to help us as we age.

DAY TWO -- Tim's orange tie campaign!
I end tonight's posting with a photo of our friend Tim's orange tie. As I mentioned in last night's blog posting, Tim has a tradition in which he wears an orange tie in Mattie's honor the entire week after Mattie's anniversary. Tim is accruing quite a collection. We know we can't get the GOLD campaign to take hold, but wouldn't it be great to start an orange tie campaign? Any case, Tim begins each of my mornings this week with a photo of his tie. It is a symbolic gesture which reminds me that Mattie is not forgotten!
 

Monday, September 9, 2013

Monday, September 9, 2013

Tonight's picture was taken in September of 2008. Mattie was sitting on the floor of his hospital room with Bob Weiman, Mattie's head of the lower school. My faithful readers may remember Bob better as the "magic man." Bob came to visit Mattie often both in the hospital and at home and taught Mattie a very unique skill, magic. Mattie gravitated to magic because it did not require gross motor movement, instead it required him to use his fine motor skills, agility, and cognitive abilities. Mattie quickly realized that not everyone can do magic and performing these tricks in the hospital made him special. Not to mention that it also caused people to take notice and interest in what he was doing. There were some days where Mattie did not want to talk to ANYONE. Yet if you pulled out his magic bag, he would consider doing a trick to two. In this photo, Bob was teaching Mattie the infamous engagement ring trick. Honestly this is a very challenging trick, but Mattie caught onto it right away! They were a good pair together and the spirit of their union lives on each year at our Foundation Walk, when Bob and several of his fifth graders perform a wonderful magic show. A show that always features a trick Bob taught Mattie, entitled, Peanut Butter Booger. In some ways the peanut butter booger trick has unofficially been named the Mattie Brown trick.


Quote of the day: In a futile attempt to erase our past, we deprive the community of our healing gift. If we conceal our wounds out of fear and shame, our inner darkness can neither be illuminated nor become a light for others. ~ Brennan Manning

When I woke up this morning the first thing I saw in my email inbox was a message from Joan Holden, Mattie's head of school, and Bob Weiman, Mattie's head of the lower school. Both emails expressed their sadness over the current state of Mattie's tree and they both felt particularly upset that we saw this yesterday on Mattie's fourth anniversary. They both clearly understand that Mattie's tree is more than just a tree to us. Seeing a dead memorial tree is like seeing a headstone at a cemetery desecrated in a way. Three tree experts examined Mattie's tree today and they all concluded that it died most likely from a fungus infection. Such an infection would explain the sudden conspicuous wilting and dying of affected leaves. As I said to Bob, I may not be a tree expert, but just like a mom and dad know when something isn't right with their child, we knew something wasn't right with our red oak.

This is a photo of Mattie's tree from September 8, 2012! This was a glorious tree and you should know it survived terrible storms, a near by electrical fire, and not once did it ever waver. But what has happened to Mattie's tree as well as his life remind me that nothing is guaranteed and a lot can transpire in ONE year's time. When I think back to 2008, we thought we were going to fight cancer and give Mattie a second chance on life. A year later, in 2009, we knew that wasn't going to be possible. Certainly a tree can be replaced unlike human life, but both Mattie and his tree tell us a very important lesson. You only get one shot at it on this earth, therefore we really should pause and evaluate how we are spending this time.



I am happy to report that Mattie's school is replacing Mattie's memorial tree for us. However, before the tree comes down Peter and I need to take all the items that have adorned the tree for the last three years off so that we can eventually re-establish their home on the next Mattie tree. I am very happy that a new tree will be planted because for us this tree is our only tangible memorial to Mattie, and it is a memorial that helps ground us on birthdays, anniversaries, and holidays. It gives us an activity to do which helps us remember and honor Mattie directly. I suppose it is like putting flowers on someone's grave. But instead of flowers we decorate Mattie's tree with items he would have loved, and items that I know capture the attention and hearts of the little ones who play near and around Mattie's tree.

I would like to end tonight's posting with the orange tie campaign. You know about the gold campaign, well our friend Tim has his own campaign in Mattie's honor. The week after September 8, Tim always wears an orange tie. This is the photo Tim sent me this morning! I assure you Tim has a great orange tie collection! Tim never got to meet Mattie, but Mattie would have gotten a BIG kick out of Tim's orange tie week in Mattie's honor!
 

Sunday, September 8, 2013

Sunday, September 8, 2013 -- THE FOURTH ANNIVERSARY OF MATTIE'S DEATH

Tonight's picture was taken in September of 2008. This has to be one of my favorite photos of Mattie while he was battling cancer. You need to understand the context behind this photo. Mattie spent several hours digging out plastic dinosaur bones from a lump of clay. He had goggles on and had all sorts of tools in his hands. Once all the bones were dug out, Mattie assembled them together, like a 3-D puzzle. Creating the dinosaur you see lying in front of Mattie. I captured that moment in time.... Mattie with the dinosaur! Mattie was tired from the dig and yet at the same time proud of his accomplishment.


Quote of the day: They say time heals all wounds, but that presumes the source of the grief is finite. ~ Cassandra Clare



Today is the fourth anniversary of Mattie's death. Before I share what this day was like for us, I want to thank so many of you who made a contribution to the Foundation on behalf of Mattie's memory, I want to thank you for the emails, and the text messages. Your kindness and thoughtfulness are NOT forgotten and are greatly appreciated.

It was a day filled with many highs and lows for us. Some lows of which I can't discuss on this blog, but I assure you there are many stories that could easily fill a book. Stories not told on this blog, and yet stories that are very much part of the grieving process. As Peter profoundly said today, part of our grief is compounded by how people react and interact with us now. I am not doing his words justice, but they caught my attention and they resonated with me.

We needed a plan today. Without a plan, we would most definitely be in trouble on anniversary dates! The plan was to visit Mattie's tree at his school and then have lunch at Mattie's favorite restaurant. Earlier in the week I bought Legos. Peter drilled holes in each Lego piece for me, and I strung a chord through each piece and created ornaments for the tree. Since Mattie was IN LOVE with Legos, I thought this would be the perfect remembrance. This photo captures the tree in CONTEXT. You can see me standing next to it. The tree is much taller than me and sits right by the field Mattie had recess at during Kindergarten. In fact, where my car is parked is where I dropped off and picked Mattie up from school each day.  

 

If today wasn't hard enough, the sight of this tree was devastating! I am quite sure Mattie's tree died! This beautiful Red Oak should not look like this so soon in the season. In fact, I went back in my files to look at photos I took of the tree on September 8, 2012. Last year at this time the tree was ALL green. Now its leaves are brown, shriveled, and the tree looks bone dry. The tree is also missing its water gator bag, which it had around its base for years. I honestly can't tell you how heartbreaking it was to see this dead tree today. This is our only memorial to Mattie and to see it looking this way brought us great sadness. In fact, it practically sent Peter right over the edge. For quite some time, we couldn't even talk to each other today. It was that upsetting.   

Here is a close up of Mattie's tree filled with Lego pieces, butterflies, planes, hot wheel cars, and the list goes on!                  

My nickname for Mattie's tree has always been the "glimmering tree!" When the sun shines on it, it twinkles, and when the wind blows, the chimes that hang on it musically catch your attention!      

For Christmas of 2012, I hung a Mater ornament on Mattie's tree. Mattie loved the movie, Cars, and I was happy to see all the ornaments we placed on the tree are holding their own and keeping the tree company. If they could only breathe life into the tree!               

When we arrived home today, there was a note on my door that flowers were delivered for us. So I went downstairs and found this wonderful Mattie Miracle color themed arrangement and beautiful hand crafted poem waiting for me. My friend Carolyn and her children created this for us and after seeing the death of Mattie's tree, these flowers and sentiments were really cherished.  I would like to end tonight's posting with a message from my mom and then the posting I wrote from Mattie's last day on this earth (it gives you a feeling for Mattie's traumatic death and the agony of the decision to basically put him in a coma to allow him to die). My mom wrote, "We know how difficult it is to reflect on what happened on this day 4 years ago.  It is an unspeakable tragedy and the consequences of that fatal day will last a lifetime never giving you peace until your last dying breathe.  We too can never be the same and understand that this is a grief that goes on and on. We share your mourning for our beloved Mattie and our only hope is that he is free of the human bondage that took his life and that his spirit has been released, like the balloons at his memorial,  to float high above us with the sun, stars and  the moon, his symbol in life, so that they may shed their brilliant light upon him forevermore and be his companion through eternity!"



MATTIE'S BLOG -- SEPTEMBER 8, 2009

I am mentally wiped out from today. I received over 150 e-mails, but I am unable to stay awake long enough to actually read them! So I look forward to reading them tomorrow. Mattie's blog was hit over 5000 times today, so I appreciate you visiting electronically Thanks Norma (one of our great sedation nurses) for the chocolate cake today. It is inspiring me to write the blog.

Mattie had a VERY harrowing night. From 2am on, Mattie was having trouble breathing, and appeared to be in intense pain. It was the most intense five hours of our lives, and the sights and sounds we observed during this time were horrific, ones I don't wish on anyone else. I can still see Mattie's sweet face writhing in pain, gasping for breath, and making a horrible congested sound, which if I don't ever hear this again in my lifetime, that would be too soon! Dr. Shad called this chest congestion, the "Death Rattle." That is an accurate description because when you hear it, you know death is pending. In all reality I found these five hours frightening, because we just did not know how the death process would unfold.

We were blessed to have Sarah Marshall, one of Mattie's outstanding HEM/ONC nurses, working with us last night. I now have four angels in my life: Ann (my angel of Hope), Linda, (my angel of caring), Debbi (my sedation nurse angel), and Sarah Marshall (my angel of mercy). Sarah Marshall was assigned to work with Mattie only last night. Typically a HEM/ONC nurse is assigned three patients during a given shift. Sarah Marshall was proactive and did everything that was humanly possible to make sure that Mattie was relatively pain free, which WASN'T easy. Mattie was on IV dilaudid, dilaudid boluses by hand, a Versed continuous drip, as well as boluses of Versed. In addition, Mattie was receiving albuterol through an inhaler, which helped to keep his airways open.

Peter and I spoke to Mattie throughout the night. We weren't sure exactly what to say, but we told him we loved him, were proud of him, and in essence he could die and we would be fine. We wanted him to know we understood he was in control over how the night played out.

By 6:15am, Mattie was receiving very high dosages of pain medicine, however his pain wasn't subsiding, and frankly we were getting concerned with how we could manage his very over taxed heart and body. Dr. Shad prescribed propofol at that point to put Mattie in a twilight sleep. But propofol is known to slow down the heart rate, and this assisted in giving Mattie relief and helped to stop prolong the agony! Mattie died within one hour of the propofol infusion. While Mattie was in pain, I could see he would try to sit up and talk with Peter and I. At one point, he mentioned to us that "he was going to die." So we concurred with him and this provided some leeway to talk about our fears and hopes for him. We told him we loved him and that it was okay to let go. Periodically Mattie would sit up and try to open his eyes, and one time he looked at me and said someone else was in the room with us, by the door. Well no one earthly was in the room with us, but we knew Mattie's death was near. Here is the thing though, seeing him suffer in pain, and listening to this "death rattle" for hours on end, made the option of death much more peaceful and appealing. My heart was aching over the pain Mattie was in. Dr. Shad assures me that Mattie was always comfortable, and the "death rattle" is much harder for the caregiver to listen to for hours.

As Dr. Shad said to me today, "Mattie fought death." Mattie just did not want to die. Dr. Shad feels that this was because he did not want to leave Peter and I behind. After all the three of us thought we would be together for always. Careful when you assume things!!! Dr. Shad told me that she has been an oncologist for 25 years and in all her career she has only had to use propofol on one other child patient! She said Mattie was her second, and Mattie needed it because he was resisting death. I actually found her statement very empowering, because if Mattie was willing to be that congested for such a significant period of time then he really must love us dearly.

Once on propofol, Mattie's body started to relax, and I decided to lie down next to him on his bed, as we were awaiting death. I wasn't sure what death was going to look like, but slowly one by one his respiratory rate went to zero, his pulse oximeter went to zero, and his heart rate also went to zero. Hearing all these values flat line was another sound I won't forget any time soon. But by that point Mattie was in my arms. The nurses and doctors gave us about an hour alone with Mattie after he died, to say good-bye. This was a very touching and tearful hour. How do you say good-bye to your child? Both Peter and I know on some level that Mattie has died today, but on the other hand, we are having intense trouble believing this. As Debbi said today, Mattie's face looked like he was smiling and in peace. Thank God because the five hour ordeal was something I am trying to forget.

Sharon, the Lombardi Clinic chaplain, was with us starting at 4am. She helped say a prayer before and after Mattie's death. Sharon did a wonderful job, and though I have my own issues I am working out with God, I saw the need for prayer and to ask God to spare Mattie more pain and suffering.

After we had some private time with Mattie, he was visited by over 20 Georgetown Hospital employees. Jenny, Jessie, and Linda bought four stepping stone kits and we all worked around Mattie and did a stone for each foot and each hand. This is something I always wanted to do, and I am happy to have these cherished gifts that will always remind me of Mattie. I appreciate Tricia, Debbi, and Katie's help, because as Peter and I were pushing Mattie's hands and feet into the cement like substance, they were cleaning the substance off of Mattie. It was an amazing experience that occurred today, because in Mattie's postage stamp sized room, many employees came by to share their fond stories of Mattie with us. It was touching to see and hear how much Mattie has touched people's lives. My parents were so happy to be able to meet in person many of the people I have been writing about on the blog. In addition, Brandon, Mattie's big buddy, also visited. I could tell that Brandon was very upset to lose Mattie, and I told Brandon that Mattie loved him and considered him a good friend.

Once all the visits were over, Peter and I had the last chance to say good-bye to Mattie before preparing him to go to the hospital morgue. Lovely, no?! Saying good-bye to that beautiful face, those cute cheeks and hands was down right impossible. There are times the true reality hits me and I don't know how we will go on. Literally!

Tricia, Debbi, and Katie then gave Mattie a bath, and as unpleasant as this sounds, they had to place Mattie's body in a body bag and transport it to another floor in the hospital. I removed myself from the room, because I did not want to see the body bag. My precious son landing up in a body bag was a little hard to take. I sat outside with Dr. Shad and Linda, and Peter remained to help with the process. Mattie's "big brother" Jey came up to see us and also stayed to help transport Mattie to the morgue. He said no one else could do it, it was his responsibility today, because he loves Mattie and wants to give him a safe drive on is final destination within the hospital.

Saying good-bye to Georgetown today made me sad. I know we are always invited to C52, but it isn't the same. The nurses were clearly affected by Mattie's death and in many ways I was surrounded by this amazing community that we have gotten to know over 13 months of hospitalization. Jey also told us a funny story. Jey could picture Mattie up in heaven and arguing with God about his wings. Jey said Mattie would WIN about how large they would be!

We arrived at the hospital last Thursday with three of us, but today we only came home with two. How I miss the noise, sights, and directions given by Mattie, instead what I have floating around in my head are the sounds of hospital monitors. When we arrived home, I saw Speedy Red and almost lost it. In all reality being around Mattie's things bring about great sadness.