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. 

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. 

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!

Wednesday, April 16, 2014

Wednesday, April 16, 2014

Tonight's picture was taken in January of 2009. Mattie was in the child life playroom of Memorial Sloan Kettering in NYC. This was Mattie's second visiting to MSK. Thankfully, Linda (Mattie's child life specialist at Georgetown) called the child life folks at MSK and gave them a heads up that Mattie loved boxes. Honestly they thought it was a VERY odd request when Linda asked them to save packing boxes for Mattie's arrival. Nonetheless, they couldn't get over how Mattie transformed these boxes. MSK was a very different place from Georgetown. It was every man for himself up there. No one really paid attention to us, and treatment was done practically anywhere. Even in a hallway! I am not exaggerating. The spacing is so limited there! Another place I never wish to visit ever again in my lifetime. This amazing blue plane that Mattie created started out as many brown packing boxes. Over two days, Mattie transformed them. The plane even came for a taxi ride, back to our hotel room! I know Mattie wanted to bring it back to DC with us, but fortunately I was able to convince him to keep it in NYC. We had so much in our home at that time, I just had no idea where "big blue" was going to fit in. 


Quote of the day: I do not literally paint that table, but the emotion it produces upon me. ~ Henri Matisse

I returned to Mattie's school today to do my second kindergarten art session. This week's lesson was on Matisse. The class has 17 students in it, and fortunately Donna (the teacher), gave me a photo of the class with each student's name attached to it. This helps me to get to know the students faster given that I only have three sessions with them! This morning was a riot! I had my first quiz. We went around the room, to see if I remembered every child's name from the week before! I got each and every one correct! That may not seem like a big deal, but to me learning a student's name is very important. That is the first connection you establish with someone. It was always a very important factor for me with my students when I taught! However, when I was teaching, I taught multiple classes, and how I was able to remember anyone's name back then now amazes me. Because we did not have the same technology available to us like today!

Any case, the kids loved that I knew their names! Before my usual three step process (lecture, hands on project, and snack), I asked them to tell me three things that they could remember about Picasso from last week. Now mind you if I asked my graduate students about what happened last week, I would most likely get blank faces for the first minute or so. But not with five and six year olds. Hands were flying in the air, and the enthusiasm was all over the place. They were able to tell me that Picasso was the master of shapes, that his art form was cubism (big word, no?!), that he preferred to be messy, he was born in Spain, he liked to paint at night, his dad was an art teacher, and I could go on! Get the picture!!!?? They got it!

Today, I introduced the children to Matisse, the Master of Color, the father of Fauvism (wild color, and color that isn't true to what actually exists in nature). Matisse's father wanted him to be a lawyer. However, while recovering from an illness, Matisse's mother brough him some art supplies to keep him busy. As I explained to the children, there was no TV, computers, iPads, or any other technology back then to keep him occupied. Matisse said, "from the moment I held that box of colors in my hands, I knew this was my life." I think this is a profound quote, because Matisse's mom transformed not only Matisse's life, but the world of art as we know it. Unlike Picasso, who basically was a child artist, Matisse came into the world of art in his twenties. 

The children had a chance to learn about Matisse's life, see examples of his paintings, and then I shared with them how Matisse transformed his artistic style as he aged. I did not alert the children to this but Matisse developed cancer and therefore it became impossible for him to physically paint in his 70s. But creativity was within him and destined to come out. Therefore, Matisse developed the art form of paper cut outs (which he could do in a wheelchair or in bed). 

This is an amazing example of a Matisse cut out! I love this example, because this person gives the work scale. Some of the cut outs are huge. They took him years to cut and arrange! I showed the children various examples and even showed them a video clip of Matisse creating an actual cut out. 

During the second half of the session, the children were then given the time to create their own Matisse cut out creation. Donna and I actually cut out all the paper pieces the week before, since that can take hours. But the children were able to select the cut outs they wanted to use, arrange them as they saw fit on a piece of foam core, and then glued them together. 


What I learned today, and mind you I have done this four years now, is some children do not like GLUE. This is my first experience seeing this in Donna's classroom! That may have caught some adults off guard, but I did not skip a beat with this fact. I did not skip a beat because Mattie and I are just like that! We both do not care for the texture of glue on us. We learned to deal with it over time, but it took practice. Just like it will take these two children practice. At first glance, I noticed this one little girl did not have her foam core board filled at all with cut outs. She looked distracted or disinterested. Given that I saw her behavior which was engaged last week, I knew something wasn't right today. So I kept on observing to try to figure out what was up. Did she just not like the assignment or was it something else? It was the glue! Once I acknowledged that she did not like the glue and it was okay not to like that feeling, but to try to work through this and I would help her, we were able to get part of her composition done. The beauty of this particular student is that she reminds me of the female version of my Mattie. If that is possible. She is the same cutie that came up to me last week to personally thank me for my efforts and for making it such a fun session. This week, at the end of my session, I had so many children come up to me and give me hugs. This was a very special gift, because not being a mom anymore, hugs from a child are few and far between. 

After the session was over, the children went to their next class. Meanwhile Donna and I got this brilliant idea of putting each of the children's cut outs together! 

Somehow when I see it like this, it reminds me of a cut out tree! I think Matisse would have truly been proud of the color, feelings, and patterns the children generated today in class.

Tuesday, April 15, 2014

Tuesday , April 15, 2014 -- Mattie died 240 weeks ago today.

Tonight's picture was taken in May of 2006. I honestly can't recall what Mattie was doing under his blanket in the middle of the day, in his clothes no less. I know he WASN'T resting! That was UNHEARD of in our household. NO NAPPING, Mattie just wasn't hard wired for it. Even as a baby. I imagine he was goofing around, playing, and most likely enjoying just being in a big boy bed. I transitioned Mattie to a bed late. Well late in comparison to his peers, who had siblings. Mattie was an active little person, who spent very little time sleeping and the notion of transitioning him to a bed too soon, did not seem productive. It took us a long time to teach Mattie the art of sleeping, but like everything else, when he was ready to learn something, there was no stopping him. He got it right away.  


Quote of the day: For small creatures such as we the vastness is bearable only through love. ~ Carl Sagan


It was a cold day in Washington, DC, with torrential rain. A total shock to the system given the spring like weather we have been spoiled with the past couple of days. In the midst of the torrential rain outside, I also had a mini flood inside my kitchen. My garden hose on the deck is the culprit yet again, and the issue has been isolated, but to fix the problem, the entire water supply to my building will need to be shut off to address the issue. Fantastic! Mind you, to me this isn't an option. I need my hose because I must have my garden. Somehow all the staff in our complex seem to understand that necessity and are working hard at trying to find a solution to the water problem. But water inside and outside is not ideal for me. 

Today I am absolutely exhausted and yet continue to work through the exhaustion because so much needs to get done. It is hard to believe the Foundation Walk is about a month away. I think the fact of the matter is that the Foundation has been inundated with so much else this year, that balancing a major fundraiser like the Walk has become almost unmanageable for me. Despite having planned this event five years in a row, it really doesn't plan itself, run itself, and the money just doesn't present itself. Every part of it has to be earned. When I mention this to small business owners, they totally get every aspect I am talking about, and therefore, I do equate the Foundation to running a small business. Which is ironic, because I never viewed myself as having these skill sets. Which is why Peter and I complement each other well and I would say is the reason the Foundation is at the point that it has gotten to today. I still remember several people saying to us during year one, that we would never get to year FIVE! I will always remember that comment. I didn't purposefully get to year five to show these individuals we could do it! That was the furthest from my mind. What they didn't realize is that failing in the eyes of a mother, just won't be tolerated. I did that once to Mattie with cancer, I will not allow that to happen a second time with his Foundation.  

Monday, April 14, 2014

Monday, April 14, 2014

Tonight's picture was taken on April 4 of 2009. This was Mattie's 7th and last birthday. Next to Mattie was Meg. Meg was the last child life intern we experienced at Georgetown. Meg is a force, not unlike Mattie and she could hold her own with Mattie. Mattie gravitated to Meg immediately and I suspect Meg was given a heads up about Mattie, that he was one of Georgetown's more challenging little patients. That would be daunting to most new interns, but that did not seem to intimidate Meg (at least on the surface). She rose to the challenge. That day, she took Mattie into the child life play room and helped him decorate the room for his birthday party. I will never forget that room. I returned to this room today with eight high school girls to host an Easter Egg hunt for children and their siblings within the hospital. Some how whenever I enter this room, I am reminded of all the good, bad, happy, and tremendously sad moments within the hospital. 

Quote of the day: Even the smallest act of caring for another person is like a drop of water -it will make ripples throughout the entire pond...  ~ Jessy and Bryan Matteo

This afternoon, I met this lovely group of high school girls outside the Hospital emergency room and together we carried up eggs, baskets, and candy to the pediatric units. Two of the girls I knew already. The second girl on the left in this photo is Isabel. My faithful readers have heard me mention Isabel on the blog, because she is the young lady who introduced me to John Green's book, The Fault in Our Stars. Isabel and I have worked on many projects together, so we know each other well. Next to Isabel (the third girl from the left), is Margaret. I met Margaret through Isabel several years ago when she was involved in her Girl Scout Troop's Build-A-Bear project that was done with Mattie Miracle, in which 100 teddy bears were created and then hand delivered to children at Georgetown Hospital. 

I had the opportunity today to give the girls a brief overview of Mattie Miracle. Several of the girls are interested in working in hospitals. They also had the opportunity to tour the peds floor, and to hear about the child life profession and to ask both Katie and Jess (two child life professionals) questions about their career, its requirements, and the nature and complexities of their job. 

Linda, Mattie's Child Life Specialist, also ordered us wonderful Georgetown Cupcakes for the occasion. Georgetown Cupcake is very generous to the Hospital and truly supports all events hosted there. I remember my first Georgetown Cupcake! It wasn't in the "free" world. It was confined to the PICU. In my mind, Georgetown Cupcake will always be associated with cancer. With that said, they are still my all time favorite cupcakes.

The high school girls lined/hid the hospital hall ways, the family lounge, and the playroom with eggs! I thought the hallway bench looked very festive!

The siblings of pediatric patients were able to hunt for eggs today in the hallways, family lounge, and play room. As you can see they were RUNNING everywhere! I never saw eggs being scooped up so quickly. It was like watching the human vacuum.

Children confined to their rooms were brought baskets filled with eggs. Though they were unable to participate in the event, they were not forgotten. The high school girls were escorted by Jess from room to room to drop off baskets to the oncology patients. 

I am not sure why this part amazed me so much! But after the eggs were accumulated, the kids wanted to come back to the playroom and count their eggs. In a way, it was like a competition to see who collected the most. Hearing them count was a riot! Some needed guidance on numbers, but it was a great teaching tool, candy and Easter eggs! I can't think of a better way to learn about numbers. 

More counting going on! 

Doesn't this look like sheer Egg Happiness!????

When I left Georgetown today, I was certainly happy that we could make these children feel special! But I would say, I definitely felt off. I was off because so many of the wonderful faces of people I once knew and loved no longer work at the Hospital. To me this is another loss, with each person leaving, a piece of Mattie is taken. All that is left is four walls, a ceiling, and a floor. I find this greatly upsetting. 



This evening, Peter and I had the opportunity to attend a community gathering in honor of our April item drive. This gathering was held by our new friend and supporter, Linda. I became connected to Linda, through my friend Christine. Linda suffered a loss of a colleague at work a few months ago, and when she suffered that loss, she connected with me and made a very generous donation to the Foundation. From that one donation, our friendship has evolved. Not because of the contribution, but because we take the time to emotionally want to connect with each other, learn about the other, and we enjoy all our email exchanges. Tonight was the first time I got to meet Linda face to face. Isn't it ironic, how you write to someone often and then you get to meet in person, and you feel like you know them already?! Peter and I are grateful that Christine connected us, we are honored that Linda reached out to us, and are very moved that her friends and neighbors would bring us items and toiletries to stock our snack/item cart at the Hospital. 



Linda gave me the opportunity to tell her neighbors and friends about Mattie Miracle and I also explained to them where their items would be going and how they would be used at the Hospital. Putting this into context helps otherwise the drive seems meaningless. But what struck both Peter and me, is this is one special community. These folks get together like this either weekly, but certainly monthly! I am not sure how they manage this, but they do! Socializing and being neighborly are important to them. Very different from our experiences in DC. Check out this adorable Bunny Cake! He was a red velvet cake!

To me this is a photo that captures the ultimate grass roots effort. Peter and I may have started Mattie Miracle. But our friend Christine promoted it to her friend, Linda. Linda then took the baton and carried it to her neighborhood. Which brings us to tonight's item drive! From left to right is Linda, Vicki, and Christine. 

All the items that people dropped off tonight! My car trunk is now stuffed!!! A great problem to have!

I end tonight's posting with this beautiful needlepoint. Linda created this wonderful gift for me as a surprise. I think it is lovely, I appreciate that she kept the details of the seven rays of the sun (for Mattie's seven years on this earth) and in the lower right hand corner added a little lego piece! Just adorable, intricate, and unique! Not unlike Mattie. 

Sunday, April 13, 2014

Sunday, April 13, 2014

Tonight's picture was taken on August 6 of 2009. How do I know the exact date? It is perhaps one we will never forget, because this is when we learned that Mattie's cancer was terminal. Notice Peter was holding Mattie and Jocelyn's boat in his hand. This was the same boat that I have been showing on the blog the past two nights. I wanted to put this whole scene into context for you! While Mattie was with Jocelyn, her sister, and Brandon designing boats and having boat races in the sink, Peter and I were meeting with Mattie's oncologist. We were having a very serious conversation in which we learned that Mattie's cancer spread to almost every one of his internal organs. It was a horrible conversation, in which we had to refocus from a cure to managing pain and a humane death. The scene you see here, was literally right after we came from seeing the doctor, and we came back into the clinic and were reunited with Mattie. As you can see, Mattie was intently looking at us to study our reactions and to determine what was going on. Kathleen, one of Mattie's outstanding HEM/ONC in-patient nurses (in pink) was bending down in the photo. It was highly unusual for Kathleen to leave the in-patient unit to come to the out patient clinic (so Mattie was already suspicious), but she wanted to be on hand to lend support. In so many ways, this photo was a snapshot of CRISIS. Crisis of parents, crisis of a child trying to understand what was happening, and even crisis in a health care provider trying to hold it together as she tried to help a family through yet another horrible hurdle. Mattie's nurses went through it all with us, and unfortunately in Mattie's cases, we never rarely received positive news. It was one nightmare result after another. 

Quote of the day: The weak fall, but the strong will remain and never go under! ~  Anne Frank

I know from looking at the calendar that today was Palm Sunday. Yet in all reality, I am not sure if I was coming or going. I had the opportunity to meet up with my friend Carolyn today and her two children. I met Carolyn when Mattie and her daughter were in preschool together. We have been connected ever since and Carolyn has been our Foundation raffle chair for five years! Running the raffle is a major commitment and labor of love. But Carolyn's whole family is involved in the Walk. About a month before the Walk, Carolyn and I always make our annual pilgrimage to the Christmas Tree Shops in Waldorf, MD. Mind you, we don't go alone. Her children come with us. They have been doing this with us since they were like 4 and 6 years of age. Now Ellie, is almost 12. I have watched them age and mature. They happen to be outstanding shoppers and they are enthusiastic about the Walk and really look for items that will fit into the baskets we are raffling off. They are fun to shop with and after our shopping adventure we always have lunch together. Over the years, I have observed them maturing and today we had all sorts of conversations. I can only imagine that this is most likely the type of dialogues I would have had with Mattie if he were alive today. Needless to say, we had a very productive and yet another fun adventure together today. We had no plans for Palm Sunday, and in a way, I appreciated Carolyn getting me out of my home, away from the computer, and getting to spend time with her children.

When I got home today, I had the brilliant idea to start cleaning our deck. Mind you Peter had been glued to the computer all day, trying to get our Walk Registration site up, loaded, and operational. That was a MAJOR super human feat. It is super human because we have an old and antiquated system. It is my hope that within the next few months we can upgrade our website and with that make all our technology needs more user friendly to work with from our end. But right now, what Peter created today took technology know how. 

Any case, our deck was a royal mess from the birds. The cleaning was intense but we made good headway. So much more needs to be done. I am happy to say the Walk website has been launched as well as our on-line raffle. I invite you to both. We already have walk registrations coming in!!!

Registration: https://www.mattiemiracle.com/Cancer_Walk_2014.html
Raffle: https://www.mattiemiracle.com/Raffle.html