Mattie Miracle 2021 Walk was a $125,000 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: 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

April 1, 2017

Saturday, April 1, 2017

Saturday, April 1, 2017

Tonight's picture was taken in December of 2006 at Deerfield Beach. Exactly the same place we are staying are visiting now. We haven't been back to Deerfield Beach since Mattie died. This is a first for us. Mattie loved coming to this beach, and it was there that he and Peter built some of their best sand castle creations. So much so that other kids on the beach came over and wanted to participate! The funny part about sand castle building with Mattie was after the structure was built, he then walked the beach with me to find natural found objects (shells, seaweed, bottle caps, stones, etc) on the shore line. He then used these items to decorate his castles!

Quote of the day: Children see magic because they look for it. ~ Christopher Moore, Lamb

Peter and I went to tour an historic house in Deerfield Beach today called The Butler House. The Butlers married in 1906 in Texas and came to Deerfield Beach in 1910 on a visit and stayed to become two of Deerfield Beach’s most popular and public-spirited citizens. When Broward County was formed in 1915, Mr. Butler was a member of the first school board. For eight years he served on the Broward County Board of County Commissioners and for four years on the Deerfield Beach City Commission. Mrs. Butler helped found the Deerfield Beach Woman’s Club and they both assisted in the establishment of the First Baptist Church of Deerfield.

This is the House. Interestingly enough the plans for the house were obtained from a popular ladies magazine, the Ladies Home Journal of September 1923. It cost $10,000 to build and it is situated on almost four city lots. The house is built of hollow tile, the interior walls are plaster on lath and the roof is made from Spanish terracotta tiles.

The House contains most of the Butler's original pieces. For example in the living room, the wicker furniture was purchased in 1923 for $500. Which was a small fortune for furniture back then. 
This is not the original dining set. It was replaced after the first one was used to board up the west dining room window during the San Felipe Segundo hurricane in 1928.
A photo of James and Alice on their 50th Anniversary. Here is what got me, this couple had three children and each of them died before their first birthday. I tried to ask the docent more, but she neither wanted to talk about it nor did she know. As she kept saying to me.... this is a happy house. Really? This is a couple who wanted to have children but each one died, I am not sure how happy they actually were. Yet the Butler House was known to be open to local children, and after school they would visit and Alice treated them to cookies and other goodies. 
This was the kitchen, which I am sure back then was modern and high tech for its time. It was very green and the kitchen nook to eat in was lime green with stenciled red flowers on the walls. 

What Deerfield Beach looked like in 1953. The Butler House is now the headquarters for the Historical Society of Deerfield, so there were lots of photographs displaying what life used to be like here. 
This is an ironmatic, or mangle. What is it? It is how Alice ironed sheets, tablecloths and bigger pieces of linen.

Specifically a mangle is a mechanical laundry aid consisting of two rollers in a sturdy frame, connected by cogs and, in its home version, powered by a hand crank or electrically. While the appliance was originally used to wring water from wet laundry, more contemporary mangles are used to press or flatten sheets, tablecloths, kitchen towels, or clothing and other laundry.

Also displayed on the property is a Kester Cottage. It has nothing to do with the Butlers, but the historical society wanted to preserve this two bedroom cottage that captured how vacationers used to spend their time by the seashore. Now many of these cottages have been destroyed for hotels and condos. 

The Kester Cottages were mostly built along the beach road in the 1930’s by William L. Kester. Kester had originally come to Pompano in 1923 for fishing but stayed and invested greatly in the community. The wood-frame cottages, which Kester would later describe as “pepper crates,” provided employment for the local workers who built them, and a means to attract tourists to the area. The sturdy, economical “Kester Cottages” soon were being built throughout Pompano, to house local residents as well as winter visitors. The houses, as many as 150, were mostly 25-by-35-foot single story dwellings on the beachside, one, two and three bedroom models. They were all painted white and each featured shutters with cutouts from the four suits in a deck of playing cards. Houses cost $950 and were rented out for $29 a month. 

In the Butlers backyard is an enormous banyan tree. Can you see me standing underneath it?

One of the docents snapped a photo of Peter and me. 

After our tour of Butler House, we then walked around the Deerfield Arboretum. It is small but has some wonderful examples of palms and other trees from around the world. 

In front of the entrance to the Arboretum is a statue of a deer. These statues are all over Deerfield Beach, because at one time the area was populated with deer. Of course with development, there are no more deer. 
 On the pathway at the Arboretum. 
This lovely pond area is at the Arboretum. It was sunny and in the 80s today. A real improvement over yesterday's weather.... grey and windy. 

Poinciana Tree is noted for its fern-like leaves and flamboyant display of flowers. Interestingly enough this tree is in the bean family and if you look closely you will see brown bean pods hanging from the tree. 
The arboretum was filled with lizards. Mattie would have gotten a major kick out of this.

Peter snapped this photo of Mattie and me with a palm frond in Deerfield Beach in 2006. It was after a storm, we decided to take a walk and Mattie found this frond. He wanted to take it back to the hotel with him. In lieu of that I convinced Mattie to take a photo with his finding. 
In honor of Mattie, when I saw this frond at the Arboretum today, I had Peter snap a photo. 

This is a drawbridge into Deerfield Beach. Mattie absolutely LOVED watching this bridge. In fact, we would walk with him from the hotel to this bridge just so he could  see it in action. As we were driving today, the bridge went up, so we took that as a Mattie sign. 

March 31, 2017

Friday, March 31, 2017

Friday, March 31, 2017

Tonight's picture was taken in April of 2002. Days after Mattie was born. Literally Peter was the one who changed every diaper the first week Mattie was born. I was just too sick and had a hard five day recovery in the hospital. Peter was there for both of us the whole time. I captured this tender moment, as Mattie was resting peacefully!

Quote of the day: The soul is healed by being with children. ~ Fyodor Dostoyevsky

The weather was damp, raw, and pouring today in DC. In fact there was a line of weather all up and down the East coast, which was delaying flights. Our plane took off two hours late, but we considered ourselves lucky that our flight wasn't cancelled. Flying when congested is truly an experience and for those of you who are faithful readers know that I don't like flying even when healthy. There was turbulence today, my seat mate was spilling over onto me, and the girls behind us were incredibly loud. Somehow I managed all of that only because I was so focused on my poor ears. Which began clogged with fluid during the flight and I felt like I was hearing underwater. Thankfully after thirty minutes of of being on the ground, my ears popped. I have come to Florida with a bad cold. I am not coughing or sneezing on anyone, but simply struggling internally with fluid in my throat, ears, and sinuses. It is my hope that a calmer pace and warmer weather helps.

This is the view from our room. As you can see it is trying to clear up, but it is a very grey and windy day here. You may even notice on the grass that there was a wedding rehearsal going on. 

Peter and I haven't been to Deerfield Beach for ten years. The last time we were here, it was 2007, and we celebrated Christmas here with Mattie and my parents. It seems like eons ago. Sometimes it can be hard to return to a place that you went to with your child. We have very fond memories of being here with Mattie as he swam in the pool with Peter and built countless sandcastles on the beach in this photo. I wasn't sure how I was going to react by coming back to this same hotel. 

Here's the thing though..... I don't remember anything about the interior of the hotel. It is as if I was never here. I asked the front desk whether they renovated the hotel since we were last here, and her answer was NO! So I can't quite explain this phenomenon. Peter thinks that I was so focused on Mattie and his needs when we were here as a family that I literally did not focus on other details. It is possible, but really? I don't remember the lobby, the restaurant, or the hotel hallways. I do remember the pool area and of course the beach. So I haven't lost it altogether. I just find it interesting how the mind works, and overall can't say that I am saddened to return to a property Mattie once enjoyed. Or let's say it doesn't compound my grief and that most likely is because I am surrounded with daily reminders in our own home of Mattie. Mattie is an integral part of our lives, even though he isn't physically with us. So while I am in Deerfield, during Mattie's 15th birthday week, I will be looking for Mattie signs. 

March 30, 2017

Thursday, March 30, 2017

Thursday, March 30, 2017

Tonight's picture was taken in June of 2009. This was at Mattie's second party held for him in honor of his seventh and LAST birthday with us. Mattie had his official party on his birthday in the child life playroom at the hospital. But between treatments, my friend Christine planned this wonderful bug party for Mattie and his friends in her backyard. Reptiles Alive, a company which introduces children to live animals came to entertain the kids. The animals they selected were all up Mattie's alley, but they creeped me out, which he just loved observing. How do you like this birthday cake in the shape of a roach? Christine found a baker who would do this and her husband, James, even came out dressed as a giant size roach (a really good sport, no?). Look at Mattie's face! He absolutely loved it!!!

Quote of the day: One path to educating empathic physicians is by encouraging trainees to maintain their natural curiosity about their patients' lives. Doctors learn to suppress curiosity in order to take rapid, standardized histories. ~ Brody (1992)

This morning I headed to my doctor's office to visit with her nurse practitioner. Since I leave tomorrow for Florida, I wanted to make sure I did not have bronchitis or a sinus infection. While talking to the nurse, she asked me.... WHY ARE YOU GOING TO FLORIDA? Is it for vacation? Well I could have answered that simply with a yes, or a no, or made something up. But in this particular instance, I told the truth. I explained that Mattie's birthday is on April 4th, and it is too hard to be home for yet another milestone without Mattie. As an aside (which I did not tell her), with each year that goes by, more and more people forget about Mattie's birthday, and I have learned to remove myself from feeling hurt and angry is the best way to cope. 

So to recap, I just told the nurse my child died from cancer, that his birthday is coming up, and that is why I am leaving town. How do you think she responded? She had NO response. NOTHING. As if she did not even hear what I said. Instead she wished me a nice trip. Now I realize she isn't a therapist, but she is human no?! I have grown accustomed to these out of touch, insensitive, and clueless reactions and responses. You would think I would be used to it by now. Why does it bother me so much? Sure a part of it is that I am a mom who lost a child, and would appreciate those I receive care from to be empathetic, but I think the reason why this troubles me so much as I look at this as an educational failure (given my former life was teaching students the art of becoming an effective therapist). Something is very wrong with the way doctors and nurses are being trained today. They are programmed not to have their own or react to others' feelings. Great if working in a vacuum and with a robot. NOT great when dealing with humans, as our feelings and emotions heavily influence our physical state! 

Honestly if a patient of mine came in and shared with me that a pending milestone of a loss is about to occur and one feels forgotten at times, and therefore has to go out of town because of it.... my immediate reaction would be.... no wonder you aren't feeling well. That is a lot of stress, pain, and grief to be carrying around year after year. But today I got NOTHING. It should be no surprise that my therapeutic theoretical mentor was Carl Rogers. The psychotherapist who coined the term, therapeutic empathy. Rogers understood the power of the human connection and the healing power of having this connection and being understood by another person. In fact, Rogers' would say that..... accurate empathic understanding means that the therapist is completely at home in the universe of the patient. It is a moment-to-moment sensitivity that is in the “here and now,” the immediate present. It is a sensing of the client’s inner world of private personal meanings “as if” it were the therapist’s own, but without ever losing the “as if” quality. 

Clearly Rogers' definition of empathy is not practiced in the world of medicine. Instead in medicine, empathy is an experiential way of grasping another's emotional states. However, empathy is a “perceptual” activity that operates alongside logical inquiry. So long as physicians continue to exercise their skills of objective reasoning to investigate their empathic intuitions, empathy should enhance medical diagnosis rather than detract from it. So what this means is that empathy is not necessarily expressed or shown, but instead is a perceptive skill that doctors use to give them further data points into a medical problem. This is a very important difference here. Because a doctor or nurse maybe absorbing the feelings being expressed by the patient, but the only one benefiting from this airing of information is the provider. He/she is getting more data points, but the patient is left feeling exposed emotionally and wondering...... DID YOU HEAR ME?! It helps to understand this philosophical difference of how empathy is executed in the medical world, but again I ask why? 

I came across this article today, What is Clinical Empathy by Jodi Halpern
( I wanted to learn more about this issue from the lens of a medical doctor. In her article, she cites three barriers to empathy in the medical profession (I list them below, as the content came directly from her article). The second barrier really resonates with me, because it is the whole reason the Mattie Miracle Cancer Foundation was created... to spread awareness about the importance of psychosocial issues and how they directly affect our physical health. Integrating health care and psychosocial support together is not just a priority for CANCER treatment, but for all medical care. Yet it is an uphill battle as the majority of medicine still compartmentalizes the physical from the psychological. 

The first barrier which interferes with empathy is anxiety. Time pressure is invoked as a concrete barrier to listening to patients, but probably functions more as a psychological barrier, making physicians anxious. This can be addressed in part by showing physicians that listening can make care more efficient. For example, it usually takes less than ninety seconds for a patient to speak without interruption at the beginning of an interview, and this helps set the tone for trust and disclosure. More generally, to address the anxieties that accompany doctoring, the culture of detachment needs to shift, encouraging physicians to acknowledge and seek support for their own emotional needs.

A second barrier to empathy is that many physicians still do not see patients' emotional needs as a core aspect of illness and care. Research shows that doctors who regularly include the psychosocial dimensions of care communicate better overall. Physicians can be educated to perceive psychosocial needs as important.

A third barrier to empathy comes from the negative emotions that arise when there are tensions between patients and physicians. Physicians who feel angry with patients and yet find such feelings unacceptable face barriers to thinking about the patient's perspective. All physicians could be taught to tolerate and learn from their own negative feelings in the way psychiatry residents are taught to pay attention to counter-transference. 

March 29, 2017

Wednesday, March 29, 2017

Wednesday, March 29, 2017

Tonight's picture was taken in August of 2008. Mattie had just been diagnosed with cancer at the end of that July. Mattie and Peter met up with our neighbor and his Jack Russell Terrier, JJ. JJ was the first dog that Mattie spent time with and developed a bond. In fact, we always joke that Mattie and JJ grew up together, as JJ came into Mattie's life when he was 6 years old. Mattie wanted a dog of his own but fortunately we did not get one right away, because we wouldn't have been able to care for the dog through Mattie's treatment. 

Today is JJ's 9th birthday. I got him gifts and Sunny visited with JJ. It is hard to accept that I couldn't take a current photo of this friendship duo today, but Mattie is gone. 

Quote of the day: We have been friends together in sunshine and in shade. ~ Caroline Sheridan Norton

When Mattie was battling cancer, JJ knew something wasn't right about his friend. Whenever we were home, JJ would visit Mattie. Mattie may look cute on the floor, but keep in mind he couldn't move his body, walk, or do most of the basic necessities of daily living. This photo was taken in January of 2009. 

After Mattie died, JJ was besides himself. He would come to our front door and just sit there. At one point, he came into our home, ran upstairs to Mattie's room, took a sandal of Mattie's, and brought it to his home and slept with it for about a year. How do you like that for friendship and loyalty? Dogs are amazingly sensitive creatures. I see it with Sunny, and I try to imagine Mattie with Sunny. They would have absolutely loved each other, as they have similar traits...... always on, always moving, the brain is always going, and very perceptive of one's environment!

We sometimes do not pay attention or understand our pet's behavior. Or should I say their reaction to grief! This was a photo of Patches taken in January of 2013. Where was she? Sitting on top of Mattie's pillows. Almost four years after Mattie died, and Patches still retreated on Mattie's bed. Why was this unusual? Because Patches NEVER sat on Mattie's bed when Mattie was alive. It was only after he died, did she spend a majority of time in his room and on his bed. In fact, Patches wasn't herself after Mattie died. She began vocalizing and roaming around the house meowing and moaning and spent a lot of time resting on Mattie's bed.  

So from my experience, I would have to say that even our furry friends were effected by Mattie's death. Where did all of this come from out of the blue? My discussion on pets was triggered by recognizing JJ's birthday today, and remembering the moments he and Mattie had together. 

March 28, 2017

Tuesday, March 28, 2017

Tuesday, March 28, 2017 -- Mattie died 393 weeks ago today.

Tonight's picture was taken in April of 2002. Days after Mattie was born. Pictured with us is my dad. My mom and dad came into town for this milestone moment. What I remember about pregnancy with Mattie was that I looked pregnant for about 6-8 months after I gave birth to Mattie. This isn't just me being self conscious, I literally had people asking me was I expecting a baby?! I attribute this long term pregnancy look to the challenge I had delivering Mattie and then my bladder surgery following my c-section. I was a very sick mom, but was happy that Mattie was healthy. Or so I thought.

Quote of the day: The human body experiences a powerful gravitational pull in the direction of hope. That is why the patient's hopes are the physician's secret weapon. They are the hidden ingredients in any prescription. ~ Norman Cousins

I LOVE Norman Cousins' quote! There is a lot that can be said for having HOPE. This is NOT a term or feeling a majority of medical doctors are familiar with, nor do they get the power of this word. Yet the words physicians choose can either instill it or squash it completely in their patients. 

My dad had surgery today. Keep in mind that my dad has been ill since JANUARY. Yet according to his urologist, could only be scheduled today (two months later) for surgery. After waiting months for this doctor to perform the surgery, he told my mom today that there are no guarantees that the surgery would correct the problem! ARE YOU KIDDING ME!? All I can say is this doctor should consider himself lucky that I wasn't in the room. Besides having no bedside manner and being particularly insensitive to my dad's symptoms (which have caused negative consequences on his quality of life), I feel we can now also add HOPE hater to his resume. Who on earth wants to hear that your loved one underwent surgery for naught?! Honestly!!! What was he thinking? Whether that is true or not true, there are ways to convey information while also providing hope. I also have learned that what patients want is doctor buy in. Buy in to working together to find solutions and it is a powerful feeling to know that if something doesn't work, the physician is in it for the long term with you. That alone is healing! In either case, this urologist and I could never work together. I would have given him his walking papers on day one. Having gone through three urologists myself, I speak from experience. No doctor should be allowed to treat a patient this way, and if he doesn't like to be challenged..... well that is too bad. He can take his God complex somewhere else. 

I turned to the internet today and literally googled..... why are medical doctors insensitive? A whole list of articles popped up (I included two links below as examples). Articles trying to explore how such a quality has evolved and has been nutured. Some articles claim that medical students are selected based on being bright and the top of their class, but they aren't being admitted based on personality. No KIDDING! What I noticed though is that articles are all over the map on the issue of sensitivity and compassion. Some say that these qualities aren't rewarded and nurtured in medical school, or that doctors have to protect themselves from patients and identifying with their feelings in order to make difficult decisions, or better yet that doctors are regulated by the economy and health insurers and therefore can't afford to spend the time listening and talking through issues. Whatever the explanation, all I can say is WOW! If they were treating a robot or an inanimate object, I could appreciate this, but human beings have feelings and thoughts and both need to be considered especially when diagnosing and treating a medical condition. 

What particularly irritates me is that some doctors feel that they know better. My dad's urologist is this way and doesn't like to be questioned. Mattie's first oncologist was like this as well. I remember him once saying to me in front of my mom and Mattie's art therapists...... GONE ARE THE DAYS when patients just listened to their doctors! If you want to pet me backward, you just say that to me! I snapped his head off in front of a group of people. At the end of the day, if a doctor doesn't treat you as part of the team to get you better, then they really are missing the boat. 

It is my hope that tomorrow is a better day for my dad and my mom. 

Why Are Doctors Such Jerks?

Why Your Doctor Is Such an Insensitive Jerk

March 27, 2017

Monday, March 27, 2017

Monday, March 27, 2017

Tonight's picture was taken in May of 2002. Mattie was about a month old. If you look in the background of this photo, you will see Patches, our calico. Patches was NEVER far from her family and kept a close eye on all of us. This photo captures the sleepy/dreamy look Mattie had after a bottle. A sight I will never forget. 

Quote of the day: Two thirds of cancers are unavoidable even if you live a healthy life, a study has shown. ~ UK Telegraph

My mom sent me an article in the UK Telegraph this weekend. The title alone catches you.... Two thirds of cancers are unavoidable even if you live a healthy life study finds. As adults we are constantly told that what we eat, our lifestyle, and what we are exposed to greatly influences our chances of getting cancer. Which fits our society's mindset.... meaning that we are in control of our own destiny and what happens to us. But here is the sad fact, a fact that I learned in 2008 (WITHOUT needing a study!!!) is that so much of our health is OUT OF OUR CONTROL. This study simply confirms the reality.  

Here is an excerpt from the article below that summarizes the message.......

The vast majority of cancers are probably down to unlucky defects in replicating DNA that occur out of the blue, they suggest. But it is not as well-known that each time a normal cell divides and copies its DNA to produce two new cells, it makes multiple mistakes. These copying mistakes are a potent source of cancer mutations that historically have been scientifically undervalued, and this new work provides the first estimate of the fraction of mutations caused by these mistakes.

The research, published in the journal Science, indicates that almost two-thirds of cancer-causing mutations are due to DNA copying errors. The discovery helps explain why cancer often strikes people who follow all the rules of healthy living and have no family history of the disease. Cancers triggered by copying errors could occur no matter how perfect the environment, according to co-author Dr Bert Vogelstein, also from the Johns Hopkins Kimmel Cancer Center. In some cancer types, such as those affecting the prostate, brain and bone, more than 95% of the harmful mutations were due to random DNA copying errors.

When I read that 95% of bone cancers (the type of cancer Mattie had) occur because of random DNA copying errors, how should this make me feel? Should this make me breathe a sigh of relief! Knowing that as his mom I did not contribute to the development of this disease? Frankly this knowledge just makes me shake my head even further, knowing that scientists are looking for the elusive "cure" for childhood cancer. A solution that seems very challenging to produce given that harmful mutations can arise anywhere and at any time. How do you design DRUGS to manage that? 

Now given all that was stated in this article, the last paragraph of the article truly gets me. After explaining the happenstance of these mutations, Professor Mel Greaves, director of the Centre for Evolution and Cancer at The Institute of Cancer Research in London than caveats the data by saying.......

Even if, as this study suggests, most individual cancer mutations are due to random chance, the researchers admit that the cancers they cause may still be preventable. We have good evidence to show that cancer is caused by a complex mix of environmental exposures, inherited risk, and random chance.

Are you confused yet? Which is it..... random mutations or the environment? Certainly we know in children it isn't the environment or inherited risk. That is one thing that the research (other research, not this study) seems to indicate, but to me this statement is more applicable to the adult world and that is where the message is directed. After all, we can't have adults walking around with the reality that they have NO CONTROL over their long term health and prognosis. Not a reality doctors can accept either by the way. But from someone who has lost a child to cancer, it is the REALITY and it truly is quite frightening!

Two thirds of cancers are unavoidable even if you live a healthy life, study finds:

March 26, 2017

Sunday, March 26, 2017

Sunday, March 26, 2017

Tonight's picture was taken on April 4, 2002, the day Mattie was born. This photo was taken right besides me in the operating room, on a warming table. 

Mattie arrived at 12:53am to be specific, and was the picture of health. Peter accompanied Mattie to the nursery where he got cleaned up, weighed and so forth. While Peter was with Mattie, I was still in surgery getting a grapefruit sized tumor removed from my bladder. No one knew I had this lipoma until my c-section. 

Quote of the day: The starting point of all achievement is desire. ~ Napoleon Hill

Three years ago, we started a major overhaul of our home. Why? Well Mattie had been gone from our lives for about five years at that point, and I was truly upset with the chaos all around me. We accumulated many things while Mattie was battling cancer and our home literally looked like an organized episode from the TV show, Hoarders. Piles of toys, gifts, Mattie clothes, and LOTS of hospital supplies and equipment were everywhere. Digging out from that required a great deal of stamina, strength and courage. It took me five years to reach that point of needing to do something and frankly the only reason I chose to do something was because I was upset that Mattie's room did not reflect his life appropriately. It looked more like a warehouse than a place where Mattie used to live and create. So that was my tipping point and motivator. So I started in Mattie's room. After that large clean out, and I mean large, in which I donated close to 60 large garbage bags of items to Goodwill, we painted Mattie's room a sunny orange color. Naturally when you fix one area of your home, you see the problems with all the others. So we painted downstairs and the hallways together and in December of 2013, Peter painted our bedroom. 

For many years our bedroom walls have been empty. I actually loved the NO clutter looks for a while, especially while trying to figure out what to put on that big wall. Peter and I have been wanting to feature some of our photos, but when I tell you this project was two years in the making I am not kidding. First I had to comb through hundreds of our photos, find the frames and layout we wanted to use and so forth. Needless to say as tonight's quote pointed out.... I had the desire. I am so glad that the desire turned into a reality today!!!

Peter is the artistic photographer between us. I love capturing photos but mine do not look like Peter's! I am quite sure that our travels and adventures together have brought out his inner photographer!

You had to be in the room today as we were putting up these photos to truly get how funny it was. As Peter was fixing these frames to the wall, I started humming a theme song that went with every photo. For example, the photo of Mt. Vesuvius, located in Naples... I hummed "when the moon hits your eyes." Why because the lyrics go....
When you walk in a dream but you know you're not dreaming signore
Scuzza me, but you see, back in old Napoli

That's amore

This is my bureau and for the longest time, I had my moon painting just leaning on the bureau. Today Peter hung his sunset and my moon together. We both did these painting at Paint Nite!

I included the 16 photos that went on our wall today so you could see them better. What I noticed however is that most of these photos were taken after Mattie died. At first I felt bad about this but then I realized (as I reflect on this often!) that since Mattie died Peter and I both turn to nature. It provides us peace and tranquility. However, I also know that Mattie loved nature and he is the one that in a way forced me to get outside and experience trees, plants, and the simpler things around me. So whether Mattie was with us literally when these photos were taken is not important. What is important is when we are surrounded by nature we feel closer to Mattie.

Peter took this photo of Mattie Moon over Tampa, FL in 2014. We were at a conference, hosting our second Mattie Miracle think tank (it was thanks to our think tanks that the psychosocial standards got published). I literally was recovering from the flu, but I wouldn't let that stop me from hosting a think tank. I recall having an incredible room with a balcony, in which I could see this sight from my bed. 

These wonderful Black Eyed Susans are right in front of our building where we live. Peter snapped this in spring of 2016.
This is Monet's Garden in Giverny, France. Peter took this photo in 2012, when we went on a European cruise with my parents. Monet is my favorite artist, and I am so glad that Peter captured the beauty of Monet's garden. A garden Monet designed himself and which inspired so many paintings.
This photo was taken in Scotland, during our European Cruise of 2012. I am very partial to thistles. My friend Margaret, who died of ALS, used to serve me tea and treats on English china. The china pattern had thistles on it. In fact, Margaret knew how special I thought our times were together, that she bought me my own thistle patterned tea pot. So when I see thistles, I think of my "dear" friend (as she used to call me). 
This photo was taken on a Caribbean cruise in 2015, near Mexico. It is a stunning sunset, and of course as Mattie loved the sun, we thought of him. Mattie used to paint almost every scene he created with a sun in it, which is why the sun is the symbol of Mattie Miracle. 

This photo was taken during a cruise of Alaska in 2011. As the ship was going through Tracy's Fjord, Peter went on deck and captured the reflections of the clouds and the fjord which are really remarkable!
When Peter graduated from business school in 1998, we went on our first European cruise with my parents. As the ship was passing Mt. Vesuvius (a volcano) in Italy he captured this moment. 

As I child I visited Italy many times, and I will never forget going with my parents and maternal grandmother to Naples and visiting Vesuvius. We literally walked the rim of the volcano. Something I will never forget and afterward, my grandmother and I bought jewelry made out of Vesuvius lava stone. 
In 2010, my parents took Peter and I to the Grand Canyon. We literally lost Mattie in September of 2009, so leaving home and going away was a feat. It was hard to do, but we did it. I had never been to the Grand Canyon before, and I know this would have been a place Mattie would have loved to explore. 

I love how Peter captured the Canyon through a tree!
In the Fall (2016), we took Sunny on our first long walk at Great Falls, VA. Sunny loved it. He was prancing up hills and over rocks with grace and ease. At the top of our climb, Peter snapped this photo. Great Falls was another Mattie favorite!
This photo was taken in 2014, when Peter and I went to vacation in Kitty Hawk, NC. We used to take Mattie to the Outer Banks in the summer. This was where he first got exposed to an ocean and a beach. Both of which he did not like at first, but as he grew older, he absolutely loved the sand and building castles. 

After Mattie died, we did not return to the Outer Banks for many years. So 2014, was our first trip back. 
In 2010, on the same trip we went to the Grand Canyon, we then went to Sedona, Arizona with my parents. These red rocks are unforgettable! Unrelated to Arizona, this sight reminds me of the movie, Cars. The scenery in the movie featured these red rocks, and being that it was Mattie's favorite movie, this photo seemed appropriate for our room!

Peter captured this photo in 2013 at the DC Aquatic Gardens. These are water lilies. I can't tell you how many times we took Mattie to the DC Aquatic Gardens! He loved it as much as we did! It is a little piece of heaven in the middle of a city.
In July, the DC Aquatic Gardens is a must see. Peter snapped this photo of the lotuses in 2014. The lotuses are only in bloom in July, around July 4th! They are an incredible and unusual sight, that we took Mattie to every July. 
This photo is of bougainvillea taken outside the entrance to Butterfly World in Florida.  Peter snapped this photo in 2016, but literally every time we went to Butterfly World with Mattie, we would take a family photo in front of this incredible flowering plant. 
This is the only photo on our bedroom wall that was taken when Mattie was alive. We took Mattie to Flamingo Gardens in Florida with my parents in 2006. I remember Mattie used to love to mimic the one legged stance of the flamingos. I am not sure who was more intriguing to watch.... Mattie or the flamingos. 

This last photo was taken in Huntley Meadows, VA. Ironically it wasn't taken in Butterfly World. I can't tell you how many times we walked Huntley Meadows' boardwalk and nature trails with Mattie. It seems very symbolic that we saw a butterfly at this park, a place we ventured so often with Mattie.