Mattie's Friend Jocelyn -- We remember you sweetly!

Mattie's Friend Jocelyn -- We remember you sweetly!
On April 2, Mattie's dear friend Jocelyn, only 31 years old, lost her courageous battle to Osteosarcoma. Jocelyn was a loyal and devoted friend to Mattie. Jocelyn had an amazing spirit, can do attitude, obtained her law degree, married a wonderful man, and the friendship she provided Mattie and our family will never be forgotten. Jocelyn was an avid Mattie Miracle Cancer Foundation supporter and her family has asked that in memory of Jocelyn donations be sent to Mattie Miracle. Click on the photo above to make a donation in Jocelyn's memory. Jocelyn's family will be sent an acknowledgement of your contribution. As you can see Mattie and Jocelyn had a way of bringing out the best in each other! Two beautiful angels lost to a horrible disease.

Mattie Miracle selected to be the Flame of Hope award recipient!!!

Mattie Miracle selected to be the Flame of Hope award recipient!!!
The Georgetown University Hospital board nominated and selected Mattie Miracle to be the recipient of the Hospital's highest honor, the Flame of Hope award. The Foundation will be bestowed this honor on March 29, 2014 at the Georgetown Pediatrics Gala.

Mattie Miracle's Interview on Fox 5 -- 3rd Annual Candy Drive is a 2000 pound success!

Mattie Miracle's Interview on Fox 5 -- 3rd Annual Candy Drive is a 2000 pound success!
Thank you for making our candy drive a major success!!!!

4th Annual Walk & Family Festival -- A HUGE Success!!!

Mattie Miracle on Fox 5 News -- Candy to Remember Mattie--November 15, 2012

Mattie Miracle on Fox 5 News - May 11, 2012

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 second anniversary!

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

We are a 501(c)(3) non-profit and tax exempt charitable organization dedicated to finding better treatments and a cure to Osteosarcoma and Childhood Cancers. We help build the awareness of osteosarcoma and childhood cancers, and educate the public and medical professionals about the realities of childhood cancers. We advocate for the psychosocial needs of the children and their families who are fighting this terrible disease. 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

Random Shots of Mattie, Family and Friends

Number of Visitors Since October 12th, 2008

April 24, 2014

Wednesday, April 23, 2014

Wednesday, April 23, 2014

Tonight's picture was taken in March of 2009. Given that today I saw a kindergarten classroom filled with artwork, selecting tonight's photo seemed very fitting. Mattie was all about art! It just came naturally to him. I suspect if I were to ask him who he preferred Matisse or Picasso, he would have fallen somewhere in between. Mattie loved colors and patterns (like Matisse), but he also appreciated shapes and painting with his imagination, which was completely Picasso's style. Mattie created this lovely painting that you see, it hangs in our dining room today. Some how its bold colors and shapes make me feel happy and though it was painted during a painful part of our lives, the painting captures Mattie's true spirit. A spirit that couldn't be squelched even by cancer. 

Quote of the day: No one has ever looked at Matisse's paintings more carefully than I; and no one has looked at mine more carefully than he. ~ Pablo Picasso

Today was one very busy day! It was one thing after the other, after the other! I started my day off at Mattie's school. Today was my last art session in which we talked about the friendship and rivalry between Matisse and Picasso. Rivalry is a big word, which needed to be explained to the children, but they caught on quickly and enjoyed following along and were intrigued to learn more about how two people could know each other for 50 years and have such a love/hate relationship. But in all reality, it was the rivalry between these two great artists that most likely inspired them to achieve true greatness! As tonight's quote so aptly stated, no one looked at Matisse's paintings more closely than Picasso and vice versa. 

I started out today's session with a short video clip, so the children could understand what we were talking about was newsworthy, that there had been a famous exhibit featuring these two artists side by side in 2003, and that the reporters even discussed the children's book they were familiar with (When Pigasso met Mootisse). The same book which was the impetus for what brought me into Donna's classroom four years ago! 

Picasso and Matisse were famous for their still life paintings! Like the concept of rivalry, I also had to explain to the children what a still life was. It was hysterical to hear that they thought they were a still life or an inanimate object!!! The hands on activity today was to paint a still life. With the hopes that the children would start to focus on color, shapes, and want to paint based on what was present in nature or use their imagination. Meaning that they would have absorbed the content learned over the past two weeks and therefore this would potentially influence their art products. Clearly I gave them a still life example of sunflowers and pieces of fruit to paint (as my photo indicates). But as they saw with my countless number of power point slides that I showed them this morning, Picasso and Matisse could paint the same subject matter and yet the final product looked completely different. That is because their styles were different. Yet over time, because of their rivalry and the fact that they STUDIED each other's pieces SO intensely they began to adopt aspects of each other's works. Therefore, over time, Picasso's paintings had more color and patterns to them, and Matisse's paintings had more shapes and dimension. The point of today's exercise was not to have the children draw verbatim what they saw but to find their inner style and artist. I will let you be the judge of whether they got the point of the assignment!!!!! 

I snapped several photos of individual student canvases today. It seems clear that the children love the colorful nature of Matisse and also appreciate his fauvism style, meaning that Matisse painted things with colors that weren't true to nature (e.g. a purple banana, when most bananas are yellow). In fact, while the children were painting today, I took them one by one to a corner of the room to vote on a ballot I created. I wanted them to vote for their favorite artist. 

The class was quite torn on who their favorite artist is.... since Matisse received 9 student votes and Picasso received 8 student votes! This is another wonderful painting. Nothing in my display was red, except the apples. So the red squares in this painting was definitely part of this artist's imagination. Which Picasso would have appreciated. 

This painting captured my attention because of the colors and patterns. 

This painting seems like the fruit are on display. Yet if you look closely the vase and sunflowers are there up top. They are integrated into the painting in a very unique fashion. With such vibrant colors!

The pink vase here fascinates me and I love the flowers coming out of it. Not to mention the very large orange and apple by the vase's side!

The last two photos I took may look more simplistic, but to me they are both striking. 

I just love the blueness of the vase, the dimensions and colors of the flowers, and the whimsy of the fruit hanging in the air. 

At the end of the hands on activity, comes the snack! Because they paint a still life, my joke is they then get to eat a still life. I set up a buffet table of fresh cut up fruits for the children. The week before, I had asked the class for their top three fruit choices. This class chose pineapple, mango, and strawberries. One student only likes apples, so I brought in cut apples too. In addition, I brought in dipping sauces for the fruit (caramel, fudge, and marshmallow). Needless to say this buffet is always a hit, but this year was a complete first for me. This year's group even ate the STILL LIFE display!!! 

In the midst of this third session, we were also visited by Bob Weiman, the head of the lower school, or as my faithful blog readers better know Bob as.... "the Magic Man." Bob taught Mattie magic throughout the year he was battling cancer. Bob learned magic from his father and continues this beautiful tradition of teaching children magic at the elementary school. In fact, as I recalled to Bob today, when Mattie first entered elementary school, he was very cautious and hesitant to come. Mainly because he loved his preschool and did not want to leave it. During his elementary school's open house for new families, I remember taking Mattie to that event. It was outside, there was a lovely tent, punch and cookies. Everyone was friendly and trying to engage Mattie. Mattie however, was hiding behind me and was disengaged. That was after coaxing him out of the car for several minutes! Honestly the rest of that event could have been a disaster, it wasn't, for one reason! Bob! Bob held a magic show. I walked Mattie over to the show, and Mattie was intrigued enough to come out from behind me, watch, and participate. It was after that brief encounter with Bob, that Mattie asked me if Bob was his "principal." When I said "yes," Mattie made a mental note, and I could see that he felt this new environment was going to work out. Needless to say, our reunion in the classroom today was an emotional one. Bob saw me in the hospital during some difficult days and I appreciated Bob's acknowledgment of the fact that it can't be easy coming back to the lower school, much less into a kindergarten classroom. The sad reality though is that in my world, I am frozen in time, I am frozen in kindergarten. Mattie's friends and their mom's are in sixth grade, but not me.... I am right back where I was left, in kindergarten. 

After Donna's class today, I hit the ground running. I ran around town picking up April item drive donations, items for the Walk, and of course the bane of my existence... I went to City Hall to deal with permits!

This afternoon and evening, I sorted through all our April item drive donations in honor of Mattie's 12th birthday. These items will be given to Georgetown University Hospital, to help inpatient families caring for pediatric patients. The items collected include soap, shampoo, conditioner, lotion, shaving razors, deodorant, toothpaste, toothbrushes, keurig cups (a big hit!!!), kid band-aids, and tissues. To all our contributors........... we THANK YOU!!!!!

April 22, 2014

Tuesday, April 22, 2014

Tuesday, April 22, 2014 -- Mattie died 241 weeks ago today.

Tonight's picture was taken in January of 2009. We took Mattie to New York City for a second time to start his experimental treatment at Sloan Kettering. He had to start the protocol in New York but could continue treatment each week at Georgetown. Before Mattie's first infusion, we took him sight seeing in New York. New York is a challenging City to negotiate when you are fully functioning, however, with a disability and in a wheelchair, it was much harder. Nonetheless, we were determined to get Mattie around using taxis and even ferry boats! One nice by-stander snapped a photo of us with Lady Liberty behind us.

Quote of the day: Cancer can take away all of my physical abilities. It cannot touch my mind, it cannot touch my heart, and it cannot touch my soul.

I found this quote on the Internet today. Certainly I understand the spirit in which it was intended and perhaps why the author even wrote it, but let's be honest.............. cancer impacts every part of the patient and the family. Both literally and figuratively. In fact, many childhood cancer treatments impact cognitive functioning, specifically treatments for brain cancer, and many high dosage chemotherapies have cardiac side effects. Mattie's therapies certainly did! So in these examples cancer directly affects the MIND and the HEART! Putting that aside, I know the psychological ramifications of cancer are NOT easily measured and quantified, and yet everything from diagnosis, scanning, living in the hospital, treatment, side effects, feeling ill, in pain, being isolated, losing friends, disease progression, and the list goes all weigh heavily on the MIND and HEART. All of these factors have consequences! Consequences that would never have arisen in the first place if cancer wasn't physically present. So yes cancer may be a physical disease, but unfortunately you are missing the forest through the trees if that is all you view it and treat it as. 

As of tomorrow, I will be on day 7 of working on Walk permits! However, it will practically be done! As of today, all permits have been filed and tomorrow I am headed to City Hall to pay our permitting fees, which have substantially tripled in cost from last year! Amazing no??! It is hard to at times accept these fees knowing that we are hosting this event on private property. But I realize it is the price of doing business. 

Later today, I went to Mattie's school to set up for tomorrow's last kindergarten art session. I am hearing feedback that the children are having lively conversations at their dinner tables at home about Matisse and Picasso and naturally their parents are wondering where this is coming from. That made me chuckle! I find the whole thing absolutely hysterical since I am not an art major, I am not an art educator, or an educator of young children. Yet something is being conveyed to these young minds! Tomorrow's lesson focuses upon the friendship and rivalry between these two great artists. In so many ways Matisse and Picasso understood and knew each other better than anyone else in the world! They certainly studied each nuisance of each others' works over the years, and in a way it was the competition between the two of them that sparked great achievements in art! Somehow the children always love this last session, given the hands on exercise and then the special snack. I will share photos tomorrow! 

April 21, 2014

Monday, April 21, 2014

Monday, April 21, 2014

Tonight's picture was taken in April of 2009. We took Mattie for a walk near our home. One of the wonderful things about April, besides being Mattie's birthday month, is it is a month in which there is a wonderful display of azaleas. In fact, I used to tell Mattie that the azaleas were blooming in honor of his birthday. Which Mattie got a kick out of!

Quote of the day: It's really going to happen. I really won't ever go back to school. Not ever. I'll never be famous or leave anything worthwhile behind. I'll never go to college or have a job. I won't see my brother grow up. I won't travel, never earn money, never drive, never fall in love or leave home or get my own house. It's really, really true. A thought stabs up, growing from my toes and ripping through me, until it stifles everything else and becomes the only thing I'm thinking. It fills me up like a silent scream. ~ Jenny Downham

Tonight's quote, comes from the novel, Before I Die, which seems to give us an insightful glimmer into just how tragic a realization it is for a teen to realize that her life's journey is ending. That she will not be able to go to college, have a job, leave home, get a house or basically grow up and become an adult. This won't be happening because her body is being ravaged by cancer. How does this news affect a developing mind? I can't even imagine, because I can hardly understand or accept what I know as a mature adult.

I had the opportunity to have lunch with my friend Junko today. As my faithful readers know, Junko is one of the first people I met at Mattie's elementary school, and in fact, our boys became instantaneous friends. When Mattie was battling cancer, Junko would visit me often, and is the person who created origami praying cranes for Mattie. Two sets in fact. One that hung on Mattie's IV pole and another which was comprised of 1000 origami cranes that always hung over Mattie's hospital bed. These cranes came with us on EVERY hospital admission and discharge and to this day they remain hanging from the ceiling in Mattie's bedroom (as you can see!). Junko and I are both well aware of the impact of cancer on a life, and how this changes family dynamics. But we reflected on the recent losses we have additionally experienced within the last month or so, and the realization of how these deaths have altered the lives of their loved ones was almost too much for us to bear. Mainly because we have the insight into how this will look maybe not right now, but days, weeks, or years from now. It left us feeling and questioning why some people are given more than seems tolerable or bearable? Of course we have no answers to any of this but I do think our own experiences with loss give us much greater insights into how to cope, manage, and assist others with grief and loss. 

This week will be my last kindergarten session with the children. Tomorrow I will go to the classroom and set up for Wednesday. Wednesday's class is a bit more intricate, so things definitely need to be prepared and ready to go the night before! It is hard to believe two sessions have gone by already, I just feel so busy with life moving 100 miles an hour. Not a pace I enjoy moving at, nor do I enjoy processing anything at this speed, and over all it makes me take stock at what has to be done differently moving forward into the future. Since this trajectory is neither healthy or sustainable. 

April 20, 2014

Sunday, April 20, 2014

Sunday, April 20, 2014

Tonight's picture was taken on Easter of 2006. We took Mattie to his favorite restaurant. The funny part about all of that was we did not know there was going to be a visit from the Easter Bunny that day! We were all surprised. Mattie was a lot like me, in that he did not care for these big type of creatures coming up and interacting with you. However, at Mattie's age, I would have dove right under the table to avoid the bunny. Mattie was braver, he looked to me first to assess the situation. When I told him it was okay, that this was a friendly bunny who wanted to give him an Easter treat, Mattie relaxed a bit and posed for a photo. I remember that Easter as if it were yesterday. Hard to believe it was eight years ago!

Quote of the day: You are on your own. And you know what you know. And you are the one who'll decide where to go. ~ Dr. Seuss

There is something to be said about Dr. Seuss' quote. I feel in so many ways, "you are on your own" applies to us on any major holiday. Because we are on our own both literally and figuratively. Spending time gathered with family and friends over holidays no longer sits well with Peter and I. We can't share in their joys, their happiness, and I am not sure when and if it ever will. So what does that mean for us? I don't know. How we chose to spend the weekend was quite exhausting, and neither one of us were feeling particularly energetic to begin with. 

Cleaning our outdoor spaces was an absolute killer this weekend. We made significant headway between yesterday and today. But did this bring me joy and happiness? I wouldn't quite say that. I am quite sure Peter's back hurts him from lifting shrubs and bags of dirt and with my significant lack of sleep, just moving from one location to another seemed like a feat. 

We had to buy more plants today and while on the George Washington Parkway, I got my camera out and snapped some photos of our glorious trees in bloom. Washington has these electric Red Bud Trees that capture my attention every spring. 

I realize this photo is blurry, given that I am in a moving car this is no surprise, but you can see the incredible cherry trees are in bloom and are stunning!

Memorial Bridge dotted with daffodils!

Today I cleaned our balcony window and Peter potted all new scrubs outside. We moved our indoor trees outside and I love this time of year when I can see so much greenery outside our windows. 

I have planted several butterfly friendly plants this year. This erysimum is one example. Throughout our deck is also sun, moon, and butterfly themed things in Mattie's honor. 

Peter found a climbing hydrangea
today! That is a new one for me. I did not know such a plant even existed. So I can't wait to see what this vine looks like. Also on our deck are shells and pine cones that Mattie collected over time. There are collections and symbols everywhere in our garden, you just need to look closely to find them! Something I know Mattie would have loved and appreciated.

April 19, 2014

Saturday, April 19, 2014

Saturday, April 19, 2014

Tonight's picture was taken in April of 2006. I took Mattie to the Reston Petting Zoo that day. This was the perfect environment for Mattie. It was a small and intimate space, in which he could run around, explore, pet and ride the animals. Mattie always loved going to that zoo and there were many firsts for Mattie there such as feeding a goat or holding an ostrich egg! On our way into the zoo that day, I snapped a photo of Mattie by this inflatable bunny. It seemed like a cute photo opportunity as we were approaching Easter. It never dawned on me that I wouldn't have many more Easters to photograph with Mattie.

Quote of the day: Do not judge the bereaved mother. She comes in many forms. She is breathing, but she is dying. She may look young, but inside she has become ancient. She smiles, but her heart sobs. She walks, she talks, she cooks, she cleans, she works, she IS, but she IS NOT, all at once. She is here, but part of her is elsewhere for eternity. ~ Unknown

Peter and I spent the day outside on our deck. Our deck has been decimated by the Winter. I have never seen it look so awful. The paint has peeled off of it and the deck also had about a four inch layer of bird seed everywhere on it from my months of feeding the DC bird population throughout the winter. It took the word 'mess' to a whole new level. So much so that I think Peter has now convinced me that I can't feed the birds any longer on the deck. We worked too hard over the part two weeks to scrape seed and other bird material off the deck. But as you can see the deck desperately needs paint. Of course our 2000 pound candy drive did not help our deck either. Mainly because large carts brought the candy in and out of home and this was extra wear and tear on the wood. So basically our space now needs tender loving care. I went upstairs to Mattie's bedroom today and snapped a before photo. It will take us weeks, not days like previous years, to transform our outdoor space into something peaceful again.

Along the perimeter of our walls is our perennial garden. However, all these flower pots needed to be cleaned up and dead leaves needed to be removed so that the green leaves had a fighting chance. In addition, I added a couple of butterfly friendly perennials to our garden this year. In hopes of attracting our winged friends. 

Progress is slow. But it is wonderful not to see anymore bird seed or bird remnants. In addition, the two fountains that Mattie made for me, as a birthday gift in 2008, have been cleaned out, and once the deck is painted will be turned back on for the spring and summer seasons. This is a lasting gift that Mattie has given me and something that I look forward to listening to in the warmer months. Peter and I are going back out again tomorrow to buy more plants. Because of the cold weather we have had in our area, the plant sales and supplies here are just not stellar. This is a first for us, because usually by this time of year in our area, the stores are filled to capacity with every plant possible. Needless to say, tonight Peter and I are absolutely exhausted physically from cleaning, carrying, digging, and planting. 

April 18, 2014

Friday, April 18, 2014

Friday, April 18, 2014

Tonight's picture was taken in February of 2009. Mattie was sitting in his wheelchair posing in front of the door into his hospital room. Mattie's room was always decorated with something! At first I posted items that people sent Mattie as reminders to him and us that he/we were thought about. But over time, Mattie's room became our home. Therefore, like any home, when you move into it, you put your own personal touches on it. So literally with each move in (and we had many!!), I would decorate, and with each discharge, I would disassemble the room. Just to unfortunately re-assemble it all over again practically days later upon re-admission. Our lives were chaotic, but there was something to be said to seeing color, paintings, and anything other than hospital equipment, white walls, or worse, Georgetown's pool blue walls. The beautiful painting on the door that you see were Mattie creations. The tell tale Mattie symbol in most of his works, was the sun!

Quote of the day: Laughter is the sun that drives winter from the human face. ~ Victor Hugo

Today was like a scene out of an I Love Lucy episode. You just had to laugh. We had a Foundation think tank conference call today. That lasted three hours long. For those of you who know me well, you know I do not like being on the phone. But a conference call for three hours tests my limits on multiple fronts. While the call was going on, I could see a team of work men coming onto our deck. Fortunately Peter was home today and knows how to manage a conference call, talk to the work men, and still be engaged and following what he is hearing. I know I couldn't have done that. If I am on the phone and I need to focus on content, then I can't have distractions. 

However, the workmen were not here for an easy problem. They were here to fix the burst pipe in my wall between the hose in my outside wall and the kitchen. Needless to say, the dishwasher was removed, walls were cut open, pipes were cut, and things were in every direction. When the phone call was over, Peter came upstairs and told me...... "DO NOT GO into the kitchen!" He prepared me for what was happening since I was upstairs. 

When I went downstairs, I was then visited by our complex's painter. Are you getting the picture? It was down right humorous! I have gotten to know Derrick, the painter, because he surprised me last summer and took my rusted bird house off my deck, cleaned it, repainted it, and returned it. That was a wonderful and unsolicited gift! People who work in our complex do that for us, which is why were aren't moving from here any time soon. Any case, Peter and I were determined to paint our own deck this weekend. It isn't supposed to rain this weekend, and the weather promises to be warmer. However, Derrick really doesn't want me to do this. He doesn't want me wasting my time and energy. Instead he wants to scrape and paint our deck for us this year. Typically I would want to do the painting and planting myself, but this year, I am accepting the help! Peter and I will focus on planting this weekend, which is something which is equally taxing but gives us pleasure. In a way we need such a task and diversion on this holiday weekend. 

Later in the day, we went to Mattie's school, where the Foundation Walk will be held. We met up with Mary, Mattie's technology teacher. Mary is a special soul. Mary lost her mother to cancer and had a very special connection to Mattie. The connection started when Mattie was healthy and was her student, but when Mattie developed cancer, Mary literally came to the hospital EVERY week to visit him. She loaned Mattie a computer to use in the hospital and continued technology lessons in the hospital with him. Of course there were many times Mattie did not feel like learning or participating and Mary understood and engaged Mattie in whatever activity he wanted to do. Mattie always looked forward to Mary's visits and recently Mary shared with me a special audio file that Mattie had recorded which I named the "una moon" file. I thought I lost that precious file. But Mary found it and sent it to me a few days ago. I haven't listened to it yet, because I have to be in the right frame of mind, but when I do, I will share it with you. I recall the night Mattie recorded his una moon song. I was getting ready for bed and Mattie was already in bed with his IV. He was waiting for me to come into his room (which is where I slept, since he couldn't sleep without adult supervision given all his health needs -- ivs, meds, physical disabilities, etc). While waiting for me, he made up a song about me. His pet name for me was "una moon." Which is how the song got its title!

Last July 4, Mary had twin boys. Today, Peter and I got to meet them! They are absolutely adorable. We brought them several Mattie Miracle t-shirts. They will be our youngest supporters yet! Mattie brought many special people into our lives, and Mary is most definitely one of these fine individuals. 

April 17, 2014

Thursday, April 17, 2014

Thursday, April 17, 2014

Tonight's picture was taken in April of 2009. Naturally this photo, like so many taken with Mattie has a story behind it. Each day that Mattie was in the hospital, he was visited and examined by the attending oncologist. That particular day it was Dr. Gonzalez making rounds. Dr. Gonzalez and I actually have very similar personalities, which is why we got along great. We are both emotional, passionate, and when we see a wrong, we have absolutely no problem using our mouths to correct the problem! Though Dr. Gonzalez was not Mattie's doctor, she understood Mattie. No surprise there either, because he was a spit fire. Mattie did not make the examination process easy, but who could blame him! Dr. Gonzalez understood the art of distraction and engaging Mattie's mind, which helped reduce Mattie's stress level over being touched. After receiving all sorts of chemotherapy, undergoing surgeries, and living in a hospital, Mattie lived with constant anxiety. That day Mattie could hear Dr. Gonzalez's pager going off and literally he was intrigued and wanted to know what she was doing. Instead of dismissing him, she sat down, showed him the pager and explained how it worked. You can see how well that went over! I would also like to note that out of all of Mattie's physicians, Dr. Gonzalez's also held firmly to the belief that if Mattie expressed pain he was indeed in pain and therefore gave him pain meds. Whereas others felt that Mattie was becoming addicted to pain meds or was manipulating the situation! Knowing what we know now, clearly Mattie was in excruciating pain all along as cancer was taking over his body! 

Quote of the day: My recipe for dealing with anger and frustration: set the kitchen timer for twenty minutes, cry, rant, and rave, and at the sound of the bell, simmer down and go about business as usual. ~ Phyllis Diller

When I saw Phyllis Diller's quote today, I just had to laugh. It was that kind of day. There are so many things I wanted to do today, but I dedicated the day to Foundation Walk permits. Any one who has been reading this blog long term knows how much I HATE to file for permits in the City of Alexandria. 

So let me back up. In May, the Foundation holds an annual Walk in Alexandria, VA, on private grounds. Yet the City of Alexandria regulates our event because it is open to the public. In many ways this is a revenue generating opportunity for the city. When you reflect upon the permits though it is quite amusing because I need a fire permit (for my tents and grill), I need a building permit, YES a building permit----for our rock climbing wall, a noise permit, a food permit through the health department and various other permits. Mind you NOT all of these permits are applied for and obtained in the same office.

In 2010, the Foundation held its first walk. That was a permit free Walk. But all that changed in 2011. In 2011, the Foundation was required to file permits and several parents from Mattie's school alerted me to the challenges associated with the permit process. That scared me because when I file permits it is only me, I don't have a Mattie Miracle staff behind me helping me! Therefore, before setting foot into the permit office which is located in City Hall, I happened to mention my concerns to my friend Tina. Without a staff, I have to move smart and more strategically. Tina reached out to her city councilman, told him my concerns and within minutes had answers for me. He connected me to the director of the permit office. Now three years later, guess who I contacted today when I had problems? YES you got it, the director of the permit office! Thankfully John is a true professional, who listens to concerns, feedback, and complaints, and addresses them one by one. 

Since 2011, I have gone to City Hall to file for permits in person. This year, the permitting process has been moved on-line. Great, no? It should be easier, right?! WRONG! I never got passed registering to use the application system. I registered with my Mattie Miracle e-mail address, but every time I logged into the system to try to fill out an application, it logged me right out. This game went on for 45 minutes! Phyllis Diller's quote came to mind, because I was ready to have a hissy fit right in front of the computer. But I took a deep breath and decided to log into the system using a different email account hoping that perhaps using gmail would help. Well the system liked my gmail account better. So I then began the application process. I was prompted to fill out a building permit for my rock climbing wall. I knew this was correct and I needed to do this, but when I looked at the form, it literally looked like I was a contractor and I was about to build a house or an apartment complex in Alexandria. So with that, I had just about enough of the convoluted process. Completing these forms correctly is important because without permits, there is NO event. 

Instead of walking away, throwing a tantrum, or yelling at someone, I did something better. I went to my email and wrote a letter to John. For me writing to John at this time of year is almost like clock work. I would much prefer to fill out these documents myself. I am an independent person, but I know enough to know when I don't know what I am doing and should seek help! I explained my issues to John and told him my frustrations and then made it clear that I wasn't going to use that unclear/user unfriendly on-line system and someone from his office was going to have to help me. Within minutes I had a response and the names of four senior people in his office who he told me would help me. To my credit, he did admit that the system has flaws and needs to be fixed but that this won't help me right now! I don't know why things have to be so complicated, but I do know one thing....... it is only through human connections that things can get resolved! As I told my friend Tina today, she helped in 2011, and now three years later her connections and assistance were still paying off today. Needless to say, it is my hope that the permitting process will be done by next week!