Saturday, September 9, 2017

Saturday, September 9, 2017

Tonight's picture was taken on April 4, 2009.... Mattie's seventh and last birthday with us. We celebrated Mattie's birthday in the child life playroom of the hospital. Mattie was very excited to have several of his close friends visit him and he, Linda (Mattie's child life specialist) and Meg (child life intern) decorated the playroom for this special occasion. Linda ordered Georgetown Cupcakes (a local DC company) for Mattie's celebration. Knowing that Mattie disliked chocolate, all of the cupcakes were vanilla! Cupcakes have great significance to us because they were one of the food items Mattie always wanted to eat! Given that the chemo made Mattie so sick, he rarely wanted to eat. He became emaciated, yet cupcakes brought him happiness. In fact, I started baking him cupcakes at home and took them to the hospital to use as incentives to do physical therapy! I can't see a cupcake today, especially a Georgetown Cupcake, without thinking of Mattie. 


Quote of the day: In prosperity our friends know us; in adversity we know our friends. ~ John Churton Collins


Tonight's quote is really very poignant. When Mattie was battling cancer, I am not sure I had expectations for any of my friends, mainly because my focus was Mattie. Yet I also knew I had a very deep and wide Team Mattie behind us, supporting us, and meeting every need and wish. So I probably did not dwell on this friendship and adversity notion. Yet who comprised or led Team Mattie? 

Now in retrospect and not in crisis, I can look at this quote and truly get the meaning behind it. Friends who I had for YEARS and YEARS, are not the ones who rose to the occasion to lead or even serve on Team Mattie. I suppose I could ask why? But I don't think there is just one simple answer to this one big question. After all, I would have hoped that friends who knew me 15 or more years and lived locally, would want to help, would know me best, and therefore, know how to mobilize forces. But it doesn't work out that way. Does that make these long term friendships any less significant now? 

In my case, the answer to this is YES. In fact, one very close friend who I met in grad school and I had known for 15 years, basically walked away from our friendship. After all those years. She told me in an email that our friendship was making her sick.... mainly because the stress of Mattie's cancer and then death was too much for her. She did not come to Mattie's funeral, nor told me we weren't friends anymore. I had to reach out to her to find out where she was and what was going on! When I did, she said to me that her husband and son advised her to sever all communication with me. I wish I was making this up or misinterpreting this, but it is the reality. 

This leads me to today's photo! This morning, we picked up a package that was left at the front deck for us yesterday. It was a dozen Georgetown Cupcakes. Even before reading the card, I knew this gift came from our friend Alison. Alison NO LONGER lives in our state, but lives out West. Yet ordered these for us to be delivered yesterday because she knew the significance of these cupcakes. 

But getting to my point, Alison and I really did not have a friendship before Mattie got sick. I knew of her, as her son was a classmate of Mattie's in kindergarten. With that said, we did not have play dates together, meet socially, and so forth. Yet Alison signed on to not only participate on Team Mattie, but to be a co-leader of the Team. Understand that this wasn't just a cute team in name only. When I say a Team, I mean practically a community. Team Mattie was comprised of 100's of people (from different networks, that all united together for the same cause), people who delivered us lunches and dinners EVERY DAY of the week for over a year. People who got Mattie gifts practically daily, who delivered me sunflowers, who coordinated a Mattie March (which later turned into the Foundation's annual walk) and also planned and coordinated Mattie's entire celebration of life ceremony after he died. This was an enormous undertaking, as it involved a full catered buffet, massive flowers, a balloon release for children, an art therapy activity for Mattie's friends, a testimonial ceremony, and an exhibit of Mattie's amazing pieces of art work (all on display, with matching placards). 

As I said to Alison, how many friendships are formed like ours? I would say it is unusual, but it also makes the bond solid. Alison saw me at my worst and never walked away. Team Mattie had two co-leaders, each with different strengths and personalities. Not knowing either one of them well, could have been daunting in the beginning, and it was, because besides helping Mattie manage treatment, I also had to get to know the two women leading his support community. Yet these two women really rallied the troops and had all our basic needs covered, and of course through this process an emotional connection unfolded. It was an intense way of getting to know two people, and I have to think the cupcakes that came yesterday are a testament to what we survived together. It is part of our history. 

Friday, September 8, 2017

Friday, September 8, 2017 -- Mattie died 8 years ago today. 

Tonight's picture was taken in February of 2009. I remember taking this photo as if it were yesterday. My friend Susan visited us in the hospital that day. With her she brought a block of clay, goggles, and tools. Within the clay were buried plastic dinosaur bones. The key was to dig all of the bones out and then build the dinosaur. Literally Mattie's hospital room was transformed into an archaeological dig. We had a sheet down on the floor that Mattie sat on and he dug through clay for hours. He was truly motivated. It was the perfect sedentary activity for him. Mattie then assembled the dinosaur bones and he was exhausted from all the fine motor work. So I snapped a photo of his tired state with his finished prize. 



Quote of the day: Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night. ~ Edna St. Vincent Millay



On this 8th Anniversary of Mattie's death, I can safely say that it doesn't get easier and NO...... TIME DOESN'T HEAL ALL WOUNDS. As I always say, "the psychosocial issues DO NOT end when the treatment does!" This is not just a cute statement but instead a powerful message that cuts through the heart of the matter. Things do not return to normal once treatment is over and if you lost a child to cancer, you live with profound psychosocial issues that you may not talk about nor may others see or notice, but they are there and they forever affect how you see, interact, and feel about life and the future.

It is hard to wrap my head around the fact that Mattie has been gone more years now than he was alive. I will never forgot the day we learned that Mattie's cancer metastasized. He literally jumped into my lap and wanted to hear the story about the day he was born. He LOVED hearing that story, since Mattie literally kicked his way right into the world. To know Mattie was to love him. His teacher once described him to me as "an old soul!" She was absolutely right! Somehow Mattie knew he had to live life to the fullest, because he wasn't going to be with us long.

We miss him today, and EVERYDAY. I am still not certain what gets me out of bed each day, but one thing I am certain of, my mission is to share Mattie with others, to keep his memory alive, and to make sure the world knows CHILDHOOD CANCER IS NOT JUST ABOUT THE MEDICINE!

TEN MATTIE FACTS:

1. Mattie was born after 24 hours of labor, by c-section.
2. Mattie was a baby who did not like to nap or sleep.
3. Mattie was a late talker and walker.
4. Mattie never crawled but actually wanted to skip steps and move to running.
5. Mattie had a sense of humor! Right from day one. When he was about six months old, I called his doctor in a panic because I thought he wasn't breathing. The doctor and I deduced Mattie was laughing so hard that it looked like he was struggling for air. 
6. At age two, Mattie could disassemble his hot wheel cars with a screwdriver and PUT THEM BACK TOGETHER AGAIN.
7. Mattie LOVED anything that moved.... cars, trains, planes, trucks, etc.
8. He was the KING OF THE LEGOs, in fact during his 14 month cancer battle, he built every LEGO set on the market.
9. Mattie LOVED the phrases "apparently" and "let's talk about it." He used them all the time. 
10. I wasn't called mom, but instead was known as "UNA MOON." Very telling, as Mattie was called "Mattie Moon" in preschool!

I posted the message above on Facebook today, and people have been commenting. Whose commenting? Those who are friends of ours who knew Mattie, those who don't know us at all, and of course fellow cancer parents. One friend said to me today something to the extent that no matter how many people write and say they are sorry for our loss, at the end of the day it's our loss and no one is really sitting with us through it. That is a brilliant comment, because that is indeed the reality. Sometimes words do not help. In fact, some words can be down right upsetting. Case in point, we heard from Mattie's hospital today regarding a communication I sent to them in July. However, sending me an email today without acknowledging Mattie's death and our loss is a BIG NO NO with me. One thing I learned early on in my professional career as a mental health provider is.... when you work with people it is important that you get to know them, what matters to them and things that are important to them. When you don't do this, this lack of regard speaks volumes to me. What today's email communication showed me is that Mattie's memory NO LONGER exists at the place we once considered our second home. To me this is like dealing with a major loss on top of another loss ON AN ALREADY VERY BAD DAY. Clearly if these hospital employees were students in my class, I would be having a field day with this, because it is a teachable moment of NOT WHAT TO DO!!!! But at the end of the day, the institution I once loved, is no longer, and frankly I am not sure they are open to learning and getting feedback. Which provides great sadness to me.

Compare this feeling above to the one I will describe below. This is Tim's third photo of an orange tie he sent me this week. Orange tie week continues next week in Mattie's memory. Tim was our philanthropy contact at Mattie's hospital and guess what???? He did not know Mattie either, but he knows what days matter and are important to us. Why? Well two reasons, Tim is a smart professional and understands how important it is to know such facts when working with bereaved parents. But second, this is just Tim, and it speaks to his character. His job may have been philanthropy, but he went beyond his job description. 

That may not be important for some people or for some donors, but it is vital to me, as I work hard to raise money in Mattie's honor. 

Speaking of Tim, before he retired from Mattie's hospital, he donated a memorial stone in Mattie's memory. As is my tradition, today we visited this stone. I am not sure Tim realizes this, but having this stone gives me some direction on September 8. 

This is the first anniversary of Mattie's death that Peter was with me, and I find it is better to be together on this day. The memorial stone reads, "In Loving Memory of Our Son Mattie Brown."

After seeing the stone above, we then walked a few blocks from the Hospital to Holy Trinity Church in Georgetown. In the Church's memorial garden is a brick that says, "In Loving Memory, Mattie Brown, King of the Legos, Classmate and Friend."

This stone was created for us by Ann Glennon. Ann was a grandmother of a preschool classmate of Mattie's. I got to know Ann quite well as Mattie and her grandson liked to hang out after preschool to play on the playground. Throughout Mattie's battle, Ann would write me beautiful, supportive letters. Not to mention that Ann was a significant contributor of the Foundation. Unfortunately Ann died from her own cancer battle, but I can't visit this brick without thinking of her. Somehow Ann understood the importance of having such a brick on difficult days. 

From Georgetown, we drove to Roosevelt Island. A place we spent many weekends with Mattie. This is the bridge over to the Island. 

This was a photo taken in November of 2007. It was by one of Mattie's favorite stones on Roosevelt Island. Around the stone was a tree that dropped these great big fruits, like you see in Mattie's hands. It is a crinkly hedgeapple tree believe it or not. If you cut open the fruit, it smells like lemons..... I speak from experience as I tried this with Mattie. 

Today we tied a white ribbon around a tree near the stone!

A close up of the white ribbon. 

Meanwhile, friends have been sending us all sorts of visual messages. Check this out from a fellow bereaved parent. 

My friend Carolyn, who runs our Foundation's raffle, sent me this photo today. She saw Mattie Moon following her while she was walking her dog this morning. She took that as a sign.

 A message sent to me by my friend in cancer, who also lost her only child to cancer.  

Our friend Marisa, sent this photo to us today. Do you see the monarch butterfly that landed on her beach chair in Bethany today? Marisa runs our Foundation's bake sales and has been connected with us since she was in high school. She reached out to me when she was a teenager and offered to play with Mattie and assist me while we were home between hospital stays. She came into our lives at a tender age, and now as a young adult remains committed and passionate about our cause.  

A fellow non-profit leader and friend sent this to me today. Carrie wanted me to know she was thinking of Mattie and painted her toes orange! That meant a great deal to me since I admire Carrie's work. 








Last by certainly not least is this wonderful Mattie video that was created for us by Tim Beck. Tim is my Facebook friend. We never met, but what I do know is he uses his photographic talents to help hundreds of parents who lost a child to cancer. His Facebook postings are always beautiful, meaningful, and as I told him.... well timed to anniversaries and special milestones. Seems I should have Tim talk to Mattie's hospital, as they could learn something from him! 

Video of Mattie Photos:

https://www.facebook.com/timothy.beck.50/videos/10155650918286081/?id=668118467

Thursday, September 7, 2017

Thursday, September 7, 2017

Tonight's picture was taken in August of 2009, almost a month before Mattie died. At this point, we knew Mattie's cancer was terminal, but we also knew Mattie wanted a special gift. Actually something he always wanted, which was a big ride-on car. When Mattie was healthy, I always said NO to this ridiculously expensive request. But it is interesting how your perspective changes when you know your child is dying. Quite a commentary no? In any case, my parents paid for "Speedy Red," the name that Mattie gave to his car. Peter and I went to pick out the vehicle and we dragged it upstairs and wanted to surprise Mattie with the box. In this photo, Peter was wheeling Mattie onto our deck for him to see the HUGE box the car came in! You can see Mattie's big smile, but you can also see how emaciated he was.... look at his legs which were as thin as toothpicks!


Quote of the day: A sad soul can kill quicker than a germ. ~ John Steinbeck

I received an email from our friend Tim today. He sent along picture number two for the week, of his orange tie. If you read last night's blog, then you know Tim used to be our philanthropy professional at Mattie's Hospital. He has come to know Mattie through our chats and words, as he never met him when he was alive. Every year, Tim has a tradition.... to wear an orange tie each day to work in memory of Mattie. Tim does this during Mattie's anniversary week of his death. 

I feel like I know all of Tim's ties and commented to him that I did not recognize this one and I asked if it were new! Indeed I was right. 

This was day one's tie! I think it helps to see them in a row! When I think the blog may not matter to anyone else other than me, then I pause and reflect on Tim's tradition! Tim and many others would never have come to know about Mattie, his courage, and bravery if it weren't for the blog. The blog enables me to keep the life and spirit of a precocious little boy alive. If you doubt this, then take a look at the photo below. 

I have become friends with an international airline pilot! Laura is much younger than I am, and we met through a colleague of Peter's at work. Mind you I have NEVER met Laura. She emailed me often during Mattie's battle, read the blog faithfully, and even now, messages me! She lives in Doha, Qatar, and this morning she sent me this photo! Can you see the moon in the sky over Qatar? She wanted me to know that Mattie Moon was following her. In fact, I get many photos from Laura from the cockpit, with real time Mattie Moon shots. Here again is a woman who never met Mattie or me for that matter, and yet through my words, I have apparently brought Mattie to life for many people! Not much gives me joy after losing Mattie, but I would say knowing that I am achieving my mission IS VITAL! 

Wednesday, September 6, 2017

Wednesday, September 6, 2017

Tonight's picture was taken in September of 2007. Mattie's friend Zachary had a nanny, Sara. Since Mattie and Zachary were inseparable, Sara and I spent a great deal of time together. We began friends, as I appreciated her caregiving style and the way she would calmly and astutely provide guidance and discipline. That particular day, we went over to Zachary's house to visit with Sara and her new baby. Sara put the baby in Mattie's lap and to me Mattie's look was priceless! 


Quote of the day: Uncertainty is the only certainty there is, and knowing how to live with insecurity is the only security. ~ John Allen Paulos

I began the day with a lovely email from our friend, Tim. Tim used to work at the Hospital Mattie was treated at, and was our philanthropy contact. Though Tim is no longer there, this hasn't stopped him from thinking of us, remembering Mattie, or supporting the Foundation. I suspect this is one of the reasons Tim is an outstanding philanthropy professional. It isn't just about raising funds, first and foremost for him it is about making a human connection. 

Tim NEVER met Mattie, but got to know him through our words, through meetings with Peter and me, and of course the blog. Each September, on the week that Mattie died, Tim wears an ORANGE tie for an entire week. Here was today's first orange tie sent our way. I LOVE Tim's tradition and would love to find a way to spread his "wear an orange item" tradition, as this week will always be the one that transformed our lives forever. 

Meanwhile this weekend we created this composition over Mattie's bed. My mom gave Peter and me this butterfly picture for our anniversary, but before hanging it, I wanted to figure out what to put around it. It came to me. Peter took pictures of all of Mattie's ceiling tiles that he painted at the Hospital. We have 3 out of the 5 original tiles, but they are dirty and there is no way I am hanging them on our walls. Instead we transformed his art work into photos and framed them. Now we will always have Mattie's tiles on display, where they should be. 

How did I get these tiles. Well about two years ago, the Hospital sent out a GROUP email to parents letting us know there would be party/gathering to collect the clinic's ceiling tiles (tiles that our children were allowed to paint on). All tiles had to come down because of the renovations. This probably sounds like an innocuous request from the Hospital. However, to me, it sent my head spinning and I actually got angry. To me these tiles represented Mattie's life and five of his creations were on display in the clinic for others to see and appreciate. Somehow that gave me peace knowing that Mattie lived on at Georgetown through his art. When I received the group email, I was deeply upset. Mainly because I found it insensitive to those of us who may have lost a child to be lumped into a message with survivors. For us, we are NOT coming to the Hospital to celebrate and pick up the tiles. For me the tiles are legacy items and I deemed the Hospital basically saying that they were NO longer needed, weren't important to them, and that the tiles were dispensable. I think there would have been a better way to deliver this message than through a group email, at least for those of us who lost our children. In any case, the clinic lost Mattie's BIG ROACH tile, and wanted to keep his Scooby Doo tile in the clinic. So I only received three of his five tiles back (the Train, the Haunted house, and the Rainbow -- which you see framed as pictures). The other two framed pieces are creations Mattie did while battling cancer. 

I feel this display was well timed with Mattie's 8th anniversary. One thing is for certain..... Mattie was very creative and thankfully made many beautiful pieces during his 14 month battle that add life to our home. Eight years without your child in it plays tricks on your mind, therefore these tangibles are VERY needed to keep us grounded. 

Tuesday, September 5, 2017

Tuesday, September 5, 2017 -- Mattie died 416 weeks ago today.

Tonight's picture was taken in the Fall of 2005. This was Mattie's first preschool class, and his teachers were Margaret (at front with the white pants) and Lana (in the back in green). The reason I am posting this photo tonight is because I met by happenstance Charles' mom today. Mattie was pictured all the way at the end of this photo by Lana. The blond haired boy next to Mattie, is Charles. If Mattie were alive today, he would have experienced his first day of 10th grade. It is hard to hear friends I know who have children discuss school starting. That is what orients them to time and day. I would like to say that hearing about school gets easier for me as time goes by, but unfortunately it doesn't. My irritation with others remains pretty consistent, perhaps because the timing of school also coincides with Mattie's death. In any case, seeing Beth (Charles' mom), was a very pleasant surprise today, and I will explain more below.  


Quote of the day: There's always going to be the circumstances you can't plan for. There's always the unexpected relevance and the serendipity. ~ Jason Silva


Today I had to take our car in for service. Going to the dealership is never an hour or two task. Rather four to five hours at the very least. So when I go, I have to be armed to hang out. Fortunately there is a Starbuck's a block away that I walk to and set up my laptop computer. I love having this concentrated time to myself to focus on the Foundation. Where I don't have to walk the dog, answer the phone, or be distracted by anything or anyone else. I am not sure anyone else likes going to their car dealership, but to me it is like a major break away. Funny, no?

Any case, while at Starbuck's, you get to know the people around you who are also there for an extended period of time. Not that we chat with each other, but we are aware of one another. Since I use an electrical outlet for my laptop in the store, I had multiple people come up to chat with me about sharing the outlet. While working, I happened to look up at a woman leaving the store, and in my mind I felt like I recognized her. But she moved so quickly out the door that I couldn't be certain if it were Beth, or my mind deceiving me. Fortunately Beth had the same reaction as me, and therefore walked right back into Starbuck's to check in with me. Of course we both immediately recognized each other as our boys went through two years of preschool together. 

I haven't seen Beth for years. We lost track of each other and with her email address changing she hasn't been getting updates on the Foundation. I have since corrected that today. To my surprise she relayed a story to me about Mattie that I frankly did not remember ever hearing. Given that Mattie died 8 years ago this, I felt that hearing this story was meant to happen. 

Beth told me that Charles remembers Mattie. NOT because Mattie had cancer and died, but because Mattie was his FIRST friend. In 2005, Mattie and Charles started a new preschool and happened to be in the same classroom. Charles apparently was sitting underneath the classroom's loft by himself. Not knowing anyone and of course it is an uneasy feeling entering a room of strangers. But apparently Mattie joined Charles under the loft, introduced himself and invited Charles to play with him. This made a big impression on Charles, as he has never forgotten it. So much so, that when Mattie headed off to kindergarten and Charles had another year of preschool ahead of him, he was saddened when Mattie left. He felt lost, since they had been friends for two years. 

I am not sure what surprised me more today..... hearing that Charles remembers Mattie, or that Mattie was his first friend, or that I got to see a side of Mattie that I would never have known about if Beth did not share it with me. What this story told me was that Mattie was sensitive to others around him, could be a leader, and also knew how to be a friend. Not that I wasn't aware of Mattie's capabilities, but it is so wonderful to hear the story and to know these things were seen through the eyes of another mom! So I would say today was an unexpected encounter that actually was a great gift. 

Monday, September 4, 2017

Monday, September 4, 2017

Tonight's picture was taken in September of 2007. Mattie was five years old and had just begun kindergarten. That weekend we took Mattie to the old Nat's stadium to see a baseball game. Mattie was a lot like me regarding sports. Meaning sports did not catch our attention and we were more interested in people watching, while Peter watched the game. 


Quote of the day: Time is too slow for those who wait, too swift for those who fear, too long for those who grieve, too short for those who rejoice, but for those who love, time is eternity. ~ Henry Van Dyke

We walked from our home over the Roosevelt Bridge today to get to Roosevelt Island. It was a glorious weather day in DC, and I knew that there would be NO parking available at the Island, so I convinced Peter to walk. When we were all said and done we walked close to five miles. 

You can see all the boating traffic on the Potomac River! 

This is the route over the bridge to the Island. Sunny had NO idea where we were taking him, but he is always up for an adventure. 

While on Roosevelt Bridge, this was our overhead view of the island, along with the board walk. Peter loves this pine tree in the distance. In fact, to watch the changing of the seasons, he snaps a photo of this tree at all times of the year. 

Meanwhile, the wild honeysuckle has taken over. It is all over and we passed a ton of it on our walk. It is very fragrant but considered an invasive plant as it is particularly found along roadsides and in disturbed areas.

From the Bridge we could also see the herons hanging out in the water.  

When we got on the Island, we got a close up of the Great Blue Heron. Despite all the people around, he didn't seem disturbed at all. 

This was a second Great Blue Heron that we saw. Of course when walking with Sunny there are no leisurely strolls, as he likes to walk at quite a clip. Though we love the board walk, Sunny prefers walking through the woods. Nonetheless, the walk wore all of us out in the heat! 

Sunday, September 3, 2017

Sunday, September 3, 2017

Tonight's picture was taken in September of 2007. Mattie came home from kindergarten with one of his "builder's workshop" creations. In this workshop, his teacher gave him access to all sorts of items found at home like paper towel rolls, cups, containers, and cereal boxes. Just to name a few! Then the kids got to create whatever they could imagine from these everyday items. Mattie LOVED this workshop! As you can see, this was one of Mattie's very first creations at school. In fact, Mattie brought MANY of them home throughout the year and loved to keep them all. Finally we were running out of space and I encouraged Mattie to photograph them and save the photos instead! 


Quote of the day: Life is a great big canvas, and you should throw all the paint on it you can. ~ Danny Kaye

This was the scene from my parent's neighborhood yesterday. They did not take this photo, it was posted on-line by a neighbor who lives on this hill. My parents live within the foothills.... right were the smoke is seen!

My parents were allowed to return to their home this morning. As you can see the foothills are all burnt and without vegetation. 

I am sure they were thrilled to see their house still standing and intact. Truly hard to believe this was possible, given the raging fires on the foothill right next to their house. I am quite sure they even have a house thanks to the incredible firefighters who have been working non-stop for days! I appreciate all of the caring messages we have received over the past day. 







Meanwhile, Peter and I went to our friend's house today to take Sunny for a walk in her neighborhood. My friend has been cleaning out her basement and apparently she had a big box filled with Mattie's creations that he made in the hospital. I suppose I should be happy to see this box. After all these were Mattie creations I haven't seen in a while. Nonetheless I wasn't thrilled to see this box! I am not sure why, other than I really wasn't in the mood to see this box, much less go through it today. 



When we got home, Peter and I went through the box and looked at the items one by one. Frankly some of these items I no longer remember, and neither does Peter. Most likely because Mattie created constantly in the hospital and yet only certain creations were truly of importance to him! 

You have to love this egg carton. When I popped it open, it was filled with foam people!

Do you like Mattie's sense of humor?! He created eggs out of model magic. One egg all the way on the right (middle row) has a pink smiley face on it! Hysterical no? 

The box was filled with all sorts of model magic spiders and bugs. Mattie even made spider webs out of pipe cleaners. This as the assortment we pulled out. 

A close up of three of my favorites made out of model magic..... a roach (tell tale Mattie), a cobra snake, and a spider with blue pipe cleaner legs. I saved all three of these and put them on Mattie's memory shelves in his bedroom.  

A close up of the roach! Don't ask me why Mattie was fascinated by roaches. I assure you he never saw a real one. Unlike myself! I really believe he loved my reaction to even the word ROACH. It made him chuckle, and it is my distaste for them, that fed his attraction. 

A close up of the cobra! After all these years, it is amazing to see some of his creations in perfect shape. 

Then we found this box that Mattie painted with all sorts of things and stickers. 

The box wasn't the surprise. The surprise was seen when you opened it up. Filled with clay and art work!

Mind you this was the box that Mattie created with and where all his items were stored in. Check out the label on the box..... "late effects books." Late effects is the term researchers and clinicians use to refer to the long term side effects children have from treatment. Which means that a child first has to be a survivor. I am NOT sure why this label bothered me so much, but it most certainly did. So much so that I decided to photograph it! Why on earth wouldn't someone remove this label before giving it to Mattie? It just reminds me when I see this that I did not have a survivor. It also signals to me that people just do not realize how certain things will be perceived in the future. 

I actually threw this box out today, but before I did, I captured a photo of the inside of the box. Mattie clearly drew in it and then attached Velcro circles inside (see the black circles). At one time, Mattie had objects he created out of model magic attached to these Velcro pieces.