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!