Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 Success!!!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are 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 stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief 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 us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

March 8, 2014

Saturday, March 8, 2014

Saturday, March 8, 2014

Tonight's picture was taken in March of 2007. That spring we took Mattie with Peter's parents to Key West. That particular day we went to an outdoor fair. Though Mattie did not like shopping or browsing for that matter, he could be encouraged to look around if he thought he could potentially find a toy or something to build in the process. It was rare for us to have a photo of all three of us together, but when I look at Mattie's expression here I remember it well. This was Mattie's smile when he was cooperating but truly did not want to take a photograph.


Quote of the day: The only thing that could spoil a day was people. People were always the limiters of happiness except for the very few that were as good as spring itself. ~ Ernest Hemingway


Today was an absolutely glorious weather day in Washington, DC. Actually quite shocking because it felt like the start of spring! The tulips and crocus are beginning to spring out of the ground. I have no idea how they are managing this given the horrible weather we have had. Our birds were out and about and though I LOVE them, they have made an absolute mess out of our deck. When you have hundreds of birds that visit you daily, they unfortunately do leave their remnants behind. Peter and I know that in a few weeks when it gets consistently warm, the bird feeders will be put away for the spring, and spring cleaning will begin to unfold. I mean serious cleaning, with our outdoor vacuum, scrubbing of the deck and our chairs and table, and then the worst of it..... the painting of the deck. This is not a task I look forward to each spring, but once it is done, we love our outdoor space, and so do our neighbors. In the winter, I am known as the bird lady and by the spring and summer, I am the plant lady of our complex. I suppose there are worse titles to be given!

Peter and I accomplished a lot today and having met my tasks for the day, we then went out for a walk around our neighborhood. We saw people out and about and eating outside, so not unlike plants and trees, it seems that there is a rebirth of people each spring. This evening Peter and I are going out to dinner with Mattie's sedation nurse angel, Debbi and her husband. We get together with Debbi every season.

I distinctly remember at Mattie's funeral and celebration of life ceremony, Debbi mentioned to our attendees that though she was Mattie's nurse, her relationship was really with Peter and me. In fact, she went on to say that Mattie really did not like her very much. I am not sure that was exactly accurate, but Debbi did symbolize procedures and scans to Mattie. When Debbi showed up, Mattie knew he was going to get sedated. The only way Mattie could tolerate procedures and MRI scans was to be knocked out for them. Since Debbi is in charge of pediatric sedation at the hospital, she became not only a Mattie advocate, but a friend of ours. Mattie suffered from great anxiety and depression, and scans really triggered his symptoms. Debbi understood this and really tried to mitigate an already difficult time. However, Mattie never woke up well from sedation. He wouldn't wake up groggy or calm. Instead, Mattie would wake up agitated, angry, and screaming and this could last for hours. Over time, Debbi helped us manage this transition from sedation, by weaning Mattie off of sedation and by giving him IV anxiety medications. Nothing about Mattie's cancer care was simple or routine, which is why Mattie's nurses became crucial to our existence and an important part of our lives. 

I must say that Hemingway's quote intrigues both Peter and me. Since Mattie's death, we do find spending time with people challenging and in some cases it can spoil our day. Yet there are people in our lives who are like a spring day, in the sense that they can renew our spirit by their kindness, compassion, and understanding. As we approach the spring season, it is my hope that we may all have the opportunity to surround ourselves with people who are as good as spring itself. 

March 7, 2014

Friday, March 7, 2014

Friday, March 7, 2014

Tonight's picture was taken on January 8, 2009. I will never forget that day! Mattie had a bone scan scheduled for that morning. You maybe asking.... how hard could a bone scan be??!! Well the answer is VERY HARD! In order to get the bone scan done effectively, the tech injected Mattie with a contrast, but the catch was once injected, Mattie had to stay STILL for an hour, so that the contrast could circulate around his body. Keep in mind that Mattie also had to do this while fasting, NO food or anything to drink from the night before. It was a recipe for disaster. Frankly I am not sure what was worse, the whole prep and waiting process, or watching the scan results on the screen, because I knew whatever lit up on the screen meant that it absorbed the contrast and was most likely cancerous (factoring out active bone growth at growth plates which will naturally light up). That particular day Linda (Mattie's child life specialist) made a deal with Mattie. If Mattie managed through the procedure and cooperated with Alex (the tech), we would treat him to a hibachi lunch at the hospital restaurant. Mattie got a kick out of watching a chef cut and cook food right in front of him, so he was motivated. He was also especially interested in going to lunch with Linda, Jenny (his art therapist), and our friend Ann. 


Quote of the day: There are some questions that shouldn't be asked until a person is mature enough to appreciate the answers. Anne Bishop


I have no idea what context Anne Bishop had in mind when she made this statement, but all I know is I relate to it quite well. Yesterday I went out to lunch with a friend. As I pulled up to the restaurant, I noticed a car behind me. Literally he stopped right behind me and when I turned around to park, he followed me as well. I made note of it but since I was going into the restaurant, it wasn't a safety concern for me. However, once in the restaurant, the man in the car behind me was also having lunch at the restaurant. He even stopped me at the front desk of the restaurant to ask me an INNOCENT question! He told me he noticed my St. Stephen's and St. Agnes school sticker on my car window. Again, all very innocent. His next question was also quite natural................ do you have a child who goes to St. Stephen's? How could such an innocent question be so complicated to answer? Or as Bishop's quote points out, maybe one shouldn't ask a question unless one is mature enough to appreciate whatever the response could be.

I remember MANY, MANY questions like this that were posed to me soon after Mattie died. They seemed to happen SO often during the that first year. Or maybe they seemed to happen frequently because the pain and grief were SO raw! I don't know. However after the first, somehow the questions stopped. Even from strangers! I am not sure what that means, do I not look like a mom now? Is that why I am no longer asked about whether I have a child or family?! I recall people asking me all the time in that first year, even for example the grocery store clerk. I remember while checking out at the super market, the clerk saw Mattie's photo in my wallet and said he was adorable and wanted to know his age. During the first year, depending upon how I was feeling that day, I would answer questions about Mattie differently. Sometimes I just let them go and did not answer and some times I simply was angry and confrontational and probably let a few people have it with my honesty. I was never mean spirited, but honest. Honesty can be hard to digest sometimes!

Now being four years since Mattie's death, I must admit that yesterday's question took me aback! Since the man who asked the question seemed like a nice fellow, who really just wanted me to know that he was a St. Stephen's graduate, I figured I would spare him the drama and the details of my life. Instead, I literally said to him, "my son used to go to St. Stephen's and yes it is a great school." He then went on to his lunch and of course I am still pondering his innocent question today. Answering questions is challenging for a grieving parent because with time, you learn two things..... first talking about one's loss and child helps regardless of how long it has been since the death occurred but second, others hearing about the loss of a child can produce all sorts of reactions. In fact, at times some of the reactions we hear can be so hurtful and insensitive that it prevents us from doing exactly what we need to do..... which is to remember our child with others.

March 6, 2014

Thursday, March 6, 2014

Thursday, March 6, 2014

Tonight's picture was taken in March of 2007. Mattie went on a trip to Key West with us and Peter's parents. Mattie had a great time exploring the Keys and as you can see here Mattie paused by this dinosaur comprised of found pieces of metal. Mattie got a kick out of this creation and was trying to do his impression of a dinosaur! A cute moment captured in time, but a moment I remember so well. 


Quote of the day: True friendship is seen through the heart, not through the eyes. ~ Friedrich Nietzsche


Peter is back in Washington, DC tonight. But after hearing about his flight, all I can say is I am so happy I wasn't on it, as I am sure Peter was too. Peter had two hours of severe turbulence. In which the plane did free falls of several hundred feet throughout the flight. Peter tells me the woman next to him was sighing and moaning and popped two Xanex, for anxiety. I feel for this woman totally and while Peter was telling me the story tonight, I could feel my level of discomfort. Thank goodness I did not know he was dealing with this, because I would have been very worried. Peter loves motion and roller coasters, but he said even this flight bothered him. So I deemed that as ONE BAD FLIGHT!!!

I started my day with a conference call. Mattie Miracle has been asked to submit an abstract to present at a conference in Toronto, Canada in October. The conference itself is international and draws doctors, nurses, and parent advocates from around the globe. One of the conference organizers has learned about our National standard of care that we are developing and feels this is something the international community would be interested in hearing about and potentially adopting. All music to our ears. So I find in addition to my other roles and duties for Mattie Miracle, I now need to add conference presentations and abstract writing to my list. This is a great problem to have, but slowly I am seeing there aren't enough hours in the day. 

When I wonder why I have such intense headaches now, all I have to do is pause and assess what I need to do in a given day or week. I have to admit it is overwhelming, but I deem this as the stresses that any small business owner faces. Though I run a non-profit, at the end of the day, it is just like running a business and has some of the same complexities, demands, and challenges. 

Later today, I had the opportunity to visit with my 85 year old friend Mary. Nietzsche's quote intrigues me because with Mary, our friendship is not only felt through the heart, but it is also felt through our eyes. In some ways, caring for Mary reminds me of caring for Mattie. In the sense that both tracked me with their eyes and really words did not need to be said. So much is said through one's eyes and despite my friend's failing health, there is some sort of comfort knowing that even without words, we can still connect. 


March 5, 2014

Wednesday, March 5, 2014

Wednesday, March 5, 2014

Tonight's picture was taken in March of 2007. Though it is unusual to have snow on the ground in March, we had snow that year (not unlike this year). With whatever snow Mattie could find, he scooped up enough to make snow castles. Not unlike Mattie's sand castles, he liked to decorate all his structures. Mattie had quite a rock collection on our deck, since he collected a rock from just about where ever he went. As you can see Mattie decided to use his rocks to finish off his castles. Many of Mattie's rocks and shells are now in our deck fountains (fountains which Mattie made with Peter's help for my birthday in 2008 -- days before Mattie's cancer diagnosis).


Quote of the day: Keep your eyes open to your mercies. The man who forgets to be thankful has fallen asleep in life. ~ Robert Louis Stevenson


Peter flew to Florida today for work and will be there for two days. I am used to Peter traveling, he has been doing this all our married life. However, it is far more difficult now that Mattie has died. Especially when I haven't been feeling well. I am officially over the flu and a sinus infection, but when the flu developed so did an overwhelming headache. A headache which hasn't lightened up for almost a month now and day in and day out of this intensity is down right debilitating. I am sure it is almost impossible to imagine an intense headache for a month, but I am not making it up! Fortunately all my neurologists have believed me over the years, but couldn't find a solution to my problem. I am thankful that I do not have to explain these pains to Peter, yet it feels depressing not to feel good for so long. 

Despite how I was feeling today, I had some important chores to address. As tonight's quote points out, thankfulness is very important in life. Mattie Miracle has the good fortune of having outstanding volunteers who help us coordinate the Foundation's annual Walk. An event that really requires a team, we couldn't do what we do without these individuals. On Monday, Peter and I are hosting a Walk committee meeting with our volunteers. As a thank you to these outstanding people, we are catering a lovely meal, with all sorts of foods, wine, and desserts. This is something Peter and I pay for from our personal finances, not through the Foundation. It would be a shame if we didn't acknowledge our friends in this way and as Stevenson indicated, it would be equivalent to being asleep in life. 

March 4, 2014

Tuesday, March 4, 2014

Tuesday, March 4, 2014 -- Mattie died 234 weeks ago today.

Tonight's picture was taken in February of 2004. Mattie was almost two years old. As you can see he was outside with us exploring the snow on our deck. One of the many things I loved about Mattie were his cute and very soft cheeks. It wasn't unusual for us to rub cheeks with each other. Mattie wasn't a very touchy feely kind of kid for the most part. However, he had his affectionate moments and during those times, there would be cheek rubs or nose to nose contact so that Mattie could look deep within my eyes. 

Quote of the day: Friendship isn't about whom you have known the longest... It's about who came, and never left your side... ~ Unknown


When I got up this morning, I heard a chirping from Mattie's window. But it wasn't a sound I typically hear coming from our deck. When I looked out the window, this is what a saw.... a female Cardinal. She isn't as brilliantly red as her male counterpart, but her chirping sound is very distinctive. In the city, we get hundreds of sparrows a day, but seeing this cutie was a real treat for me. While I was seeing birds, so was my friend Mary at the bird feeders I set up for her. Mary's caregiver let me know that they were visited by cardinals, blue jays, and sparrows today! It only took the birds five days to find the seed, which is remarkable, given the fact that they are not used to being fed in that location. However, I think the snow helped greatly because the birds could easily see the feeders! It made me happy to know that a part of nature is now with Mary. 

I had the opportunity to see both of my friends today who are ill. As my lifetime friend Karen said to me today....... is this really a good idea? It was a good question given the fact that I am balancing a lot, have been sick and depleted for so long, and of course the sheer emotional impact of such visits. During one of my visits today, I had the opportunity to chat with my friend's daughter and interact with her grand daughter who is 3. She is a precious age and aspects of her remind me of Mattie. Fully on, engaged, and smart as a whip. Any case, I care about my friend and it is so nice to have the opportunity to get to know her family in this meaningful way. I rarely have the chance to see or play with a child any more, so it is ironic that my friend's grand daughter gravitates to me. While I was rubbing lotion on my friends hands and arms, the little one wanted lotion too. She was so excited by getting some on her hands and her sheer joy and energy made all of us laugh and feel better today. This kind of energy can only really be generated in a child and yet it is contagious. One of the many things Peter and I miss about Mattie. Life from an adult lens is fine, but at times boring, or perhaps stagnant. Definitely not the case when you see the world through the eyes of a child. 

Later in the day, I had the opportunity to see my friend Mary. Mary slept for a good portion of my visit, but then awoke and saw me. I was so happy to see her perk up, open her eyes, and eat ice cream with me. I am quite used to one way conversations now with Mary, I have been for some time. I told Mary about a concert I went to on Friday with my friend Heidi. The concert featured Irish music, with a band from Ireland. Mary loves Irish music, so though she couldn't come to the concert, I brought her a CD back for her to listen to. So today we heard it together and I chatted with her. Mary maybe declining, but there is no doubt in my mind that while I am talking to her, she is listening, tracking me, and enjoys the most basic of human needs..... touch and connection.

March 3, 2014

Monday, March 3, 2014

Monday, March 3, 2014

Tonight's picture was taken in February of 2006. Mattie was in preschool that year. Our dining room and living room floors were the hub for all creative projects. It wasn't unusual for me to push the furniture out of the way, cover the floor, and then Mattie and I would get paint, clay, sand, glue, and whatever else was needed for the project at hand. As you can see, Mattie was working hard in this photo to design Valentine's day cards for his classmates. Certainly I could have bought the cards, but I wanted Mattie to experience making them with his two hands. To me a hand made card says... I thought about you and you are my friend! Mattie loved these kind of projects and even though he was only 3 and half years old, he paid special attention to detail, color, and composition. 


Quote of the day: Snow provokes responses that reach right back to childhood. Andy Goldsworthy


Washington, DC was at a stand still today. Basically everything stopped working and moving. The federal government closed last night in preparation for the snow storm. Once the federal government closes, everything follows suit. As I look at the window tonight, it appears that DC got about four inches of snow. I am sure some people were delighted to see the snow and to have the day off. I remember those days! However, I do not share in that excitement any more. To me snow is depressing, because as tonight's quote points out, snow seems to provoke thoughts of childhood. In my case, thoughts of Mattie. Mattie loved the snow, playing in it, building in it, and somehow the cold did not bother him. If he were with us today, we would have all been outside. But he isn't with us and therefore I did not venture out at all. 

For me it was business and work as usual. However, while working I had a day of bird entertainment. Our resident sparrows were all a flutter and starving. Right outside Mattie's window is this huge wall. This is how our sparrows line up for feeding. They watch us as we refill the bird feeders. We have two large feeders on our deck that must be filled daily! That is how hungry they are, and literally the kind of troop we feed!

Through Mattie's window, I can see all the trees he and Peter planted in our commons area. This ceder tree was a tiny thing at one time. However, over the years since they planted it, it has grown. Though it may have a Christmasy feeling to it today with the snow, the reason I snapped a photo of it is because it is dotted with sparrows. The sparrows are like live ornaments!











During the spring and summer months we grow tomatoes. However during the winter, we keep the tomato cages up for the birds to perch on. Clearly you get a feeling for all the birds we attract. They are on the walls, in the trees, and all over our deck. They are marvelous company, fun to listen to, and help pass the cold winter months. Today being no exception. 

March 2, 2014

Sunday, March 2, 2014

Sunday, March 2, 2014

Tonight's picture was taken in December of 2007. While in Florida, we took Mattie for a fan boat ride. It was a great adventure where we got to see alligators up close and personal. This was NOT the boat we went on. Instead, this was a retired fan boat that kids could go on and explore. Naturally Mattie went right on and as you can see we snapped a photo of him. Mattie LOVED boats and he would always tell us that he was going to save all his money to buy a boat. My joke with him was he was going to buy a remote controlled toy boat, and of course Mattie always corrected me. He did not want a toy boat, he wanted a REAL boat and he wanted to be its captain. 


Quote of the day: Shock is a merciful condition. It allows you to get through disaster with a necessary distance between you and your feelings. ~ Lisa Kleypas


I received an email from my friend Heidi today. In the email was a link to the article entitled, The emperor has no clothes: The reality of the grief. It is an article written by a mom who lost her 11 year old son to cancer. I included the link below if you would like to read this short piece for yourself. 

The article is short, but very MEANINGFUL, powerful, and absolutely accurate. In fact, I have used many of the author's same words to describe my own feelings. Two lines and one paragraph in her article absolutely jumped off the computer screen at me. The two grief statements that are so impactful are:

  • It never gets easier, it just gets different.
  • I take it everywhere I go

Losing a child to cancer in a way is a lifetime sentence for a parent. However, there was no crime committed and and yet we are being punished for doing nothing wrong, other than loving our child. With each year living with grief, the author is exactly right...... grief gets different. It feels different, looks different, and changes. But we shouldn't equate changing and different to it getting BETTER! Which is how our society views grief!!! Grief does indeed go everywhere we go, and I have tested that theory. It goes with us on vacation, on airplanes, to different continents, and is ever present at home and at work! 

Within the article is the following paragraph:
Like people do, each year grief changes and takes on a new form. I think sometimes it was easier to deal with when the shock and numbness hadn't worn off: so much was hidden in the dense fog of it, as if you can only bare to see just two feet in front of your face. In a way, that kind of grief had a protective quality to it—shielding you from the size of it all, allowing you to take it on only a bit at a time. Without the fog this new grief cries loudly, “The Emperor has no clothes,” as it points out how exposed and unprotected I feel in the face of it.

I never used the terminology.... the emperor has no clothes, but yet Jen and I are speaking the SAME language. She is talking about a fog, numbness, and the protective factor such qualities produce. I would say in the first year of grieving Mattie's death, I was living in a fog and was very numb. Yet when the numbness started to fade, that is when true grieving began to happen and unfortunately have been living in this evolving grief journey ever since. Everyone thinks and truly believes that the first year of grief is the WORST. That parents need support during this time. Certainly they do, but I would beg to say that it is all subsequent years following the loss that truly become traumatic. They are traumatic because protective layers get stripped away and by that point, as our defenses come down, social support also dwindles. Well then what? Well this sets up the dynamic for a perfect storm.... a recipe for some let downs, hard times, and an overall questioning about life and if one has a future on this earth. My joke after the first year, while in my second year was.... I wish it was the first year again, how I long for the days of feeling numb and being in a fog. Because once it lifts, all I can say is WOW! I suppose it is equivalent to Jen's analogy, in the sense that it feels like you are walking around in public with NO CLOTHES ON! 

What is the answer to the Emperor has no clothes on?! I have no answers because for me losing Mattie changed me at the core. So you can put whatever clothes you would like on me, but the core doesn't change, and if it does change, then what level of grief and guilt does that also produce for a parent? Does that mean our child has been forgotten, does that mean our child is not central to our universe any more? Or what?! All I know is I live in a warped reality in which I will always be the mom of a seven year old child, in which Mattie is always in kindergarten, despite seeing his friends progressing through sixth grade now. 

The emperor has no clothes: The reality of the grief. ~ Jen Lynn Arnold