Tuesday, May 20, 2014

Tuesday, May 20, 2014 -- Mattie died 245 weeks ago today.

Tonight's picture was taken during the Mattie March in May of 2009. Mattie was surrounded by his cousins. He had a big smile on his face and clearly was enjoying his time out of the hospital and with people who cared about him and wanted to support him. It was a day to be remembered, and it was that day that serves as the backdrop and foundation for all subsequent Walks! 


Quote of the day: Never be so busy as not to think of others. ~ Mother Teresa

Peter and I appreciate so many of the wonderful comments and feedback we are receiving about the Foundation's fifth anniversary Walk! We are still tallying up contributions toward the event and should have a grand total soon, but it is a complex total to calculate because donations for the Walk have been coming into the Foundation since March! This is NOT a just the "day of event" financial total! It makes me very happy to hear that people of ALL ages enjoyed our event, that they felt it was well organized, there were lots of things to do, and that it was hard to tear their children away from certain activities, such as the Legos hands on tent! Wonderful news! I received many compliments this year about the attention to details and the overall flow of the event! One person went so far as to say that it was clear the amount of time and attention paid to logistics, in order to make attendees feel relaxed, at ease, and cared for! The best compliment I could have received!!!

Our professional photographs are starting to come in and we are beginning to down load them! I will organize them and will share them soon. So stay tuned!

This afternoon, I literally was serenaded from Mattie's window. This bird caught my attention with his beautiful voice, so much so that I decided to go outside and look for him. When I looked up, this is what I saw!!!! This wonderful Cardinal. I always loved Cardinals, and they happened to also be Mattie's favorite bird. Then I met Mattie's favorite HEM/ONC nurse, Tricia, and Tricia shared with me her grandmother's philosophy about cardinals. She felt that when you see a cardinal that it is a sign and visit from a loved one who died. I always remembered Tricia telling me that, so when I saw and heard this beauty today, I couldn't help but wonder if this was a message from Mattie. Needless to say I was outside in our complex snapping photos and listening. I swear at one point, this bird was looking at me, as much as I was looking at him!

My parents and I spent the day together. My mom and I went to my zumba class this morning and then we all had lunch at one of Mattie's favorite restaurants in DC. On the way to this restaurant we unfortunately passed the funeral home in which Mattie's cremation took place. Every time I pass that location, I can't help but remember that moment in time. I can remember it as if it were yesterday. Every detail, even the room we sat down in to discuss arrangements. Not to mention seeing coffins and urns, and so forth. The visuals will always remain burned in my head. Even these many years later, and yes they all are triggered just by passing the outside of the building. 


It happened to be a glorious weather day, and despite neglect from sheer preoccupation with the Walk, our garden is thriving! I snapped some photos!

To me our flowers just look happy and when Mattie's fountain is on and flowing, it is a very peaceful spot. 

It is a secret garden in a way, which isn't too secret, in the middle of a ton of buildings! Yet we have been trying to build up a wall of plants to block out the rest of the world. It seems to be quite successful!

Monday, May 19, 2014

Monday, May 19, 2014


Tonight's picture was taken in May of 2007. Mattie was out on our deck and showing off his new, "got lobster" t-shirt! I can't help and pause when I look at this shirt now, because this shirt has been integrated into Mattie's memory quilt. In fact when I see the patch within the quilt, I can remember this particular moment that you see on the deck! Isn't it interesting how the quilt captures these memories and in a way brings them to life in a three dimensional sort of way?! 





Quote of the day: Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. ~ Leo Buscaglia


I may need a few more days to return back to a more normal routine. At the moment I am still exhausted and wiped out from the Walk. Yet as Buscaglia's quote points out, kind words can make all the difference in the world. I received a beautiful email today from one of our newest supporters, Linda. Or as I call her, my "Mattie Miracle Ambassador." Linda was one of our Walk volunteers on Sunday and today, after laundering her event t-shirt, she wore it around town while doing some chores. She enjoyed the event and wanted me to know this, but it is her enthusiasm, her faith in what we are doing, and her belief that we can achieve our goals that truly make me feel supported. A supporter supporting the supportee. How do you like that?! I know I love it!!!

Later today, I received another email from a friend, who I met when our children went to preschool together. She wrote, "Just thinking of you - what an amazing day yesterday! The people, the cause, the activities - the raffle baskets! -- even the weather. You guys do such a great job. I thought of Mattie throughout the day and felt his spirit and your love and care in every detail." 

This email meant a lot to me because I am all about details. Tiny details, especially as it relates to capturing Mattie's memory. Such as playing the ABBA song, Dancing Queen, when the Walk began, to having Legos prominently featured at the event. Mattie LOVED Legos and Dancing Queen was his song of choice when doing physical therapy! I was so happy that another mom noticed and could also feel Mattie's presence with us on that track! I know that I can't be on that track without thinking of Mattie. To me that track is NOT just a track! But it is a place where we rallied in 2009, to help Mattie through his cancer battle. To me his presence will remain there. 

Which maybe why I personally feel that on Foundation Walk days, there can be NO rain! Mattie just won't allow it! Certainly every year there is a threat of rain, and in many cases, we have gotten quite close to being rained out. But in the end, that Mattie sun, always comes out! Mattie just wouldn't let it rain on me, NOT on a WALK day. Call it superstitious or illogical, but to me while everyone else is worried about the weather, this is honestly one thing I truly do not dwell on. I leave it up to Mattie and know he has it taken care of! 

Sunday, May 19, 2014

Sunday, May 19, 2014

Tonight's picture was taken today at the 5th anniversary Mattie Miracle Walk & Family Festival. On the left was a display of Mattie and on the right was a display of his close buddy, Jocelyn, who just lost her battle to Osteosarcoma on April 2, 2014. Both taken too young by a horrible bone cancer. It is 1am, and we have been working since before 6am to get this Walk together and operational today! Then of course once it was over, we had to load the car back up, unload it, and try to disassemble everything and store it back securely in our closets. It is not as if we have a basement and a lot of storage, so I have to pack strategically! I am beyond exhausted and therefore I will write more later. As our professional photos come in, I will post several!

We of course thank ALL our volunteers for their amazing service and dedication and of course all our supporters who believe in our cause and stand behind us..... making our financial goals possible! 

Quote of the day: Wherever you turn, you can find someone who needs you. Even if it is a little thing, do something for which there is no pay but the privilege of doing it. Remember, you don't live in a world all of your own. ~ Albert Schweitzer

Saturday, May 17, 2014

Saturday, May 17, 2014

Tonight's picture was taken in October of 2007. It is one of my favorite photos I ever took of Mattie! On the eve of our 5th anniversary Walk, I reflect on this beautiful face and it reminds me why I kill myself to put this Walk together. Certainly I do it for the health and welfare of the Foundation and to help other children and families. But at the core what always drives me is Mattie's memory. Probably that is my ultimate compass in life, caring for Mattie. Whether Mattie was alive or now this means caring for and protecting his memory through the Foundation. Preserving and respecting that memory are vital to me, which is why every aspect of the Walk and our events are important to me. The details are important, because it is within those details that certain nuisances of Mattie are revealed. 


Quote of the day: There are no shortcuts to any place worth going. ~ Beverly Sills

It is 12:30am, I am exhausted and have to get up in less than 6 hours to get ready to prepare for the Foundation Walk set up. It is hard to believe that this day is upon us! I don't know where the time has gone. We now have my parents, Peter's parents, and my lifetime friend Karen in town! All to help support us through the Walk. There was a ton of last minute things to do today, including loading up the SUV with Walk materials. That alone is a huge operation and production! I feel so much rides upon this Walk, mainly because the Walk provides a good portion of our annual operating budget! So to me Walk season signifies PRESSURE and STRESS. It is my hope at this time tomorrow, I can feel happy about what we were able to accomplish for the Foundation. But in the mean time, please keep your fingers crossed for us. We thank all of our supporters for their kindness and generosity! Without you we would not be able to reach our targeted financial goal! 

Friday, May 16, 2014

Friday, May 16, 2014

Tonight's picture was taken on May 25 of 2009. I remember this day very well. It was a Saturday. The night before I went home and slept there and Peter spent the night alone with Mattie. By that point in treatment, I occasionally had to take a weekend night off because I was having trouble functioning. When I came back to the hospital that day, Mattie was happy to see me and gave me a big greeting. Peter captured that tender moment. I can still remember what that cute bald head and those cheeks felt like. Mattie's skin was super soft and had a baby quality to it always!


Quote of the day: I strongly believe that missionaries make better products. They care more. For a missionary, it's not just about the business. There has to be a business, and the business has to make sense, but that's not why you do it. You do it because you have something meaningful that motivates you. ~ Jeff Bezos


I have reached the point this week that I can't even string sentences together to write the blog. This is very unlike me because even under the worst of circumstance I can usually write. But I am absolutely depleted! In all reality, I have not been feeling well physically since February. I have been holding on somehow by a shoe string, but now I have reached the end of my rope, and if I do not get rest soon, I won't be able to function. 

On another note, a family friend of Peter's wrote to us yesterday about her husband who underwent a very complex cancer surgery at Georgetown Hospital. This friend is an avid blog reader and has been following our story for years. On occasion, she even writes to us with her insights and compassionate thoughts and feelings! Which are always appreciated. She is also a cat lover, so though we have never met, we are sympathico! Any case, in her email yesterday, the subject header was, "I'm finally starting to understand!" 

What is she understanding? Well she wanted us to know that now that she is helping her husband battle cancer and is living in the hospital she completely appreciates what we went through with Mattie. She always appreciated it but now appreciates it on a much deeper level and frankly doesn't know how we did it with a child, since she feels going through it with an adult patient is bad enough! As usual her comments were insightful as were her observations about how daunting it is to care for someone post surgery! 

In her email she also mentioned that she wished her husband was offered some Legos, which of course doesn't happen in the world of adult oncology. The whole notion of Legos always strikes a chord with me because Legos were vital during our cancer existence!!! They were our therapeutic saving grace when Mattie was fighting for his life. Therefore I was determined to find this fellow some Legos! So when I need something at Georgetown, my faithful readers know who I contact................. Linda!!! Mattie's child life specialist! All I know is if I get sick, I would like Linda by my side, and I am NOT a child! This is a woman who understands how to advocate, know how to work through networks and channels within a hospital setting, and also knows how to handle a crisis. I saw it and experienced it numerous times. Any case, I told Linda about our friend's husband and asked her if she would deliver him a Lego set! Guess who got Legos tonight??! Who says Legos are just for kids? They are not!!! Legos kept me and Peter sane, and I hope they do their colorful magic in this ICU room this week. 

Thursday, May 16, 2014

Thursday, May 16, 2014

Tonight's picture was taken in May of 2008, during Grandparents Day at Mattie's School. This was a big event at the lower school, in which the kids get dressed up, classrooms are opened up for the grandparents to see the children's work, a lovely brunch is served on the lawn, and there is even a choir concert featuring every grade. I know all of this because I was a parent volunteer that day. I did not want to miss out on anything when Mattie was growing up, I don't know if it was a sixth sense or what, but looking back, I am so happy I made that decision. Otherwise, I would be filled with a lot of regrets now. When I look at this photo, we all imagined that there would be many more grandparent's days to come. I never would have guessed that this would be our first and last or worse, that two months later Mattie would be diagnosed with cancer. 


Quote of the day: Distance is not the thing that makes us suffer, it's missing someone that's always in your mind that really makes you suffer. ~ Anurag Prakash Ray


I think tonight's quote says it all! It is the constant longing that haunts a grieving parent day in and day out. It is the absence of someone so special that can cause you at times to feel like you are losing your mind or that things just don't make much sense in the world. What is a given unfortunately is that no one truly understands or walks this journey with us. A grieving parent in many ways walks this path alone. Which somehow only exacerbates how awful the pain of missing someone so special is in the first place. 

It is now 12:30 in the morning and I can say I am so wiped out from Walk plans that I can't even string two sentences together. Which means therefore that I have to stop writing. My parents came into town today, Peter's come into town tomorrow, and my lifetime friend, Karen, arrives Saturday. This all signifies that the Walk is here whether I am ready for it or not! 

Wednesday, May 14, 2014

Wednesday, May 14, 2014

Tonight's picture was taken on May 11 of 2009, right after the Mattie March. We took Mattie home after the festivities and he was joined by his cousins. Who he enjoyed spending time with both when he was healthy and when he was battling cancer. This photo captured a happy time, which for Mattie was few and far between. Notice the black cat face painting that Mattie requested at the March. Mattie loved cats and I suppose he was partial to them because we were a cat owner. Yet anytime he could get his face painted, his number one choice was always a CAT! You may have noticed the logo of the first Mattie March t-shirt here and in the last several photos I have been posting this week. In a way the logo was designed by Mattie's care community and Mattie. The orange background of the shirt is an image of Mattie's Mr. Sun painting, which hangs in our dining room. In addition, if you look carefully there is also a photo of Mattie embedded into the sun! We wanted to make it whimsical. 


Quote of the day: We're born alone, we live alone, we die alone. Only through our love and friendship can we create the illusion for the moment that we're not alone. ~ Orson Welles


It was another busy day for the Foundation. However, in the midst of the busyness, I got an innocent and yet profound text message from my friend in cancer. Remember this is her first year grieving the loss of her son. We are at totally different points on the continuum of grief and yet we understand each other. She pointed out a feeling, I noticed within my first year as well. The phenomenon is a sort of post-holiday blues. In a way dealing with the aftermath of any holiday once your child dies is almost worse than bracing for the actual holiday itself. As strange as that sounds! I don't know if it is psychological. Maybe people offer us more support on the actual holiday, or we are just more cognizant of the holiday and therefore prepare ourselves for that day. Either case, once the day is done, to some extent so are we. Set backs can easily occur and it doesn't take much to cause us to spiral further down hill. As if going down further were even possible. But the depths of grief for a parent are deep and they also can be frightening. I truly believe we could try to describe this feeling to you, as I attempt to do at times on this blog, but I am not sure I still do an adequate enough job at depicting the devastation.  

However, because my friend and I are on different ends of the continuum, I sometimes suspect, or can imagine what she may be headed to feeling or experiencing in the near future. Of course telling her my feelings or observations wouldn't be helpful because again they were my experiences and they may not play out this way for her. I also think too much information about the grief process really isn't helpful. It has to be managed in small dosages, otherwise, it is really like getting hit by a tidal wave and carried out to sea without a life vest. The first year of grieving is definitely like living on a perpetual emotional roller coaster. With panic ensuing, anxiety, and living on the edge between break downs, numbness, sheer shock and confusion. But this rawness does dissipate, and naturally the question is to what? After my numbness wore off, my reality sunk in and that is when my true grieving began. For me, this started happening around year one and it wasn't a pretty picture. So when people tell me the first year is the worst, I laugh, because yes year one was hard, but year two was no picnic. Frankly any year without your child is a struggle. It may not be as raw and desperate as the first year, but with time comes deeper and actually more heart breaking pain and reality. I am continually perplexed by this one year time frame within our society and I truly wonder who established this myth and keeps perpetuating it! It simply needs to stop because it does more harm than good. 

Tuesday, May 14, 2014

Tuesday, May 14, 2014 -- Mattie died 244 weeks ago today.

Tonight's picture was taken in May of 2009. What was being captured here was the tissue paper flowers and vase that Mattie presented to me for Mother's day. The wonderful part about all of this was Mattie made the vase in clinic (using a pottery wheel) and he made the tissue paper flowers with his art therapists. Mattie was very excited to present me with the final product, which was why the staff got my camera and captured this for me. Which I am glad they did!!! The irony is this vase with its flowers remains in my living room even today. The boy is gone, but his gifts and art remain. 


Quote of the day: Find something that you are passionate about in making a difference and you’ll find a waiting kinship of people willing to unite for the cause. ~ Wes Adamson

It is now after midnight! During Foundation Walk season, it is safe to say that I put in 15 hour days. That is not an exaggeration. The administrative aspects of the Walk alone are overwhelming, not to mention the actual planning, logistics, communications, and so forth. This morning I decided to migrate away from my computer for a bit and went to zumba class. But I couldn't stay for the whole class. I stayed for half of the class because I had a conference call to join. Typically I wouldn't schedule things concurrently, but this call was with the State of Ohio Department of Health. Peter and I have been invited back to Columbus to present at the Health Department's Forum in June. Each State in our Country has its own State Plan and in this case a comprehensive cancer plan to regulate the treatment and care of cancer. The State of Ohio is opening up its Plan to include psychosocial care language, which is frankly a huge initiative (because I am not sure any other State has such language!) and we are honored to be given a voice at their forum. Apparently they feel that our voice and our vision will help to kick off their meeting given what the Foundation has been able to achieve. I know what the Foundation does is special because I live it each day, but to hear it from someone else, in another STATE, I have to pause and take notice. 

A lot is on my plate right now, and we also received an email about potentially writing a book chapter for another book! Needless to say, I did not open that email yet today. I will save that for tomorrow. But I know this is a legitimate request because it is from a psychiatrist who is part of psychosocial standards team! So I view these as all positive steps for Mattie Miracle, which is why I keep pulling the 15 hour days to raise the money necessary to be able to accomplish the things that we do!

Monday, May 12, 2014

Monday, May 12, 2014

Tonight's picture was taken on May 11, 2009, at the Mattie March. There was a lot going on in this photo. Mattie was being pushed in his wheelchair around the track by Robbie, one of his favorite child life volunteers. However, peering behind the wheelchair was Mattie's buddy, Campbell. Mattie and Campbell were very close kindergarten buddies. In fact, in many ways, this was a photo of the three amigos. Mattie, Campbell, and Charlotte. Mattie considered Charlotte his "girlfriend" and he even gave her an engagement ring. Well of sorts! After his dental cleaning while he was in kindergarten, he got to pick out a prize and he made a b-line for a ring. It was a premeditated choice, because he planned on giving it to Charlotte. I had no idea at the time, until one day I was driving them to a birthday party and Mattie decided to hand Charlotte the ring and explained that he planned on marrying her. She seemed fine with the idea, but then again in Charlotte's mind, Campbell, Mattie, and her were going to be college roommates with each other! Any case, they were all good friends who appreciated each other and they stood by Mattie healthy and with cancer. 


Quote of the day: Stand up for someone who is in need so that it will build confidence in you to stand up for yourself at times when required... ~ Adil Adam Memon

When I found this quote tonight, it immediately resonated with me! Somehow advocating for someone else gives us confidence in ourselves in ways that we really couldn't achieve in any other fashion. I experienced this first hand when Mattie was battling cancer. I may have been a good advocate before, but when Mattie was sick, I learned to become an excellent one. Certainly I had the proper motivation, but in a medical setting if you do not advocate for your child and yourself, forget it. You and everything else around you will fall through the cracks. Unfortunately the louder you scream the more attention you get! I remember on numerous occasions, friends from the outside world would come and visit me inside the hospital and they couldn't understand my behavior. They couldn't understand my anger and why I had to present and talk the way that I did! But entering a hospital and living there is a lot like moving to a foreign country. It has its own nuisances, language, culture. It is best to learn how to operate in that culture in order to survive. Which is what I had to do in order to help Mattie through his battle. So as a result I do feel at times a level of confidence, because in so many ways I feel as if Peter and I lived through some of the worst of what life has to offer. 

It has been a full day for Peter and me! Peter flew to Florida and back today on business! Lucky that it wasn't me. That would have done me in for the rest of the week! Peter left me at the computer this morning and found me at the computer when he returned home tonight. It has just been non-stop today. So I am signing off, because I need time away from a computer screen!

Sunday, May 11, 2014

Sunday, May 11, 2014

Tonight's picture was taken in May of 2007, on Mother's Day. That day we went out together as a family for Mother's Day lunch and as you can see Mattie was very excited. He was trying to indicate with his arm gesture his love for me. It was very cute and a priceless moment in time. I never thought that there wouldn't be more Mother's days to come when this photo was taken. The sad commentary in all of this is that I do not have many mother's day photos with Mattie. Mattie was an active little one and eating in restaurants wasn't his thing. Therefore it was only as he approached elementary school age did Mattie somewhat understand the notion of sitting still to eat. Of course in 2008, Mattie developed cancer, so we did not have many times to formally celebrate this occasion together, which is why this is my typical Mother's Day photo that I post from year to year. Mattie dying at a young age was not only tragic but it also left large holes in our lives, which are very hard to fill, especially on a National holiday such as this one.  


The origin of Mother's Day in the US: In the United States, Mother's Day did not become an official holiday until 1915. Its establishment was due largely to the perseverance and love of one daughter, Anna Jarvis. Anna's mother had provided strength and support as the family made their home in West Virginia and Philadelphia, Pennsylvania where her father served as a minister. As a girl, Anna had helped her mother take care of her garden, mostly filled with white carnations, her mother's favorite flower. When Mrs. Jarvis died on May 5, 1905, Anna was determined to honor her. She asked the minister at her church in West Virginia to give a sermon in her mother's memory. On the same Sunday in Philadelphia, their minister honored Mrs. Jarvis and all mothers with a special Mother's Day service. Anna Jarvis began writing to congressmen, asking them to set aside a day to honor mothers. In 1910, the governor of West Virginia proclaimed the second Sunday in May as Mother's Day and a year later every state celebrated it.


I find it particularly interesting to read about the origins of Mother's Day in the United States. What intrigues me about it is that it did not start as a fun fanfare. On the contrary, the origin of Mother's Day is tied to LOSS. A woman was grieving over the loss of her mom, and her minister delivered a sermon in her mother's honor and then decided to acknowledge all mothers in attendance during the service. From that moment on, this minister and this woman's daughter changed the significance of the second Sunday in May for all of us in the United States. The loss, grief, and pain of the death of a loved one can inspire great things. The death of Anna Jarvis' mom did just that. This does not surprise me in the least. What does surprise me is that I NEVER knew this story until today!

I would have to say today was an emotionally challenging day. I spent the entire day working. I am not sure if it is a good or bad thing that the Foundation's Walk is always a week after Mother's Day. It basically prevents me from having to face Mother's Day. As more and more time lapses from Mattie's death, celebrating Mother's Day becomes more awkward. Going out and being among people on this day is even more uncomfortable. On such days, I feel as if I am not a part of this world, and certainly not a part that is understood. I could disengage and no one really would know the difference. 

Toward the end of the day, I had a meltdown and shared my feelings with Peter. Peter handled it well as always, he helped me to regroup, and we ate dinner outside on our deck. 

The highlight of the day was Peter cleaned out Mattie's Fountains. I call them Mattie's fountains, because in the summer of 2008, Mattie and Peter built me two fountains for my birthday. I love the sound of water, and Mattie knew this! Despite having a horrible winter and our deck receiving some massive blows, the fountains managed to hold their own! As I always say, they were built by two masters! Here is the first fountain, as you can see surrounded by our beautiful plants! What you may not be able to see is inside the fountains are many of Mattie's rocks that he collected!

I snapped this photo, because at this angle, you can only see the tip of the Fountain through the plants, which is the view I see when sitting outside. 

This is the second Mattie Fountain
on our deck. This one is a completely different design. Made out of flower pots! Inside this fountain are many of Mattie's seashells that he collected! 

Within Mattie's room, which is also where my desk and work area are located, I am starting to accumulate various piles for the Walk! It took me hours today to compile a lot of the things you see here. 

Here is another pile on the other side of the room. Organized chaos is beginning. But it has to be organized because in all reality we do not have a long time to set up this event, and there are many pieces that have to come together for it to fall into place correctly!