Tuesday, July 22, 2014

Tuesday, July 22, 2014 -- Mattie died 254 weeks ago today.

Tonight's picture was taken around this time of year in 2008. How do I know this? Because on July 23 of 2008, Mattie was diagnosed with cancer. This is a day Peter nor I will ever forget. I will share with you how Mattie was diagnosed tomorrow. It is like a movie reel playing over and over in my mind. I can picture everything quite vividly! In any case, once we found out Mattie had cancer, Mattie felt like decorating with Christmas lights. So though it was July, out came the lights! It is funny how cancer put everything in perspective! Meaning that NOTHING really mattered at that point... we lived in that absolute moment. 

Quote of the day: I've been making a list of the things they don't teach you at school. They don't teach you how to love somebody. They don't teach you how to be famous. They don't teach you how to be rich or how to be poor. They don't teach you how to walk away from someone you don't love any longer. They don't teach you how to know what's going on in someone else's mind. They don't teach you what to say to someone who's dying. They don't teach you anything worth knowing. ~ Neil Gaiman

Though I am not in total agreement with tonight's quote, I do get the sentiment and do appreciate the overall gist of what it is saying. I do think schools today are missing the boat! They are rewarding all the wrong things and parents are right up there promoting and pushing their kids to an absolute extreme. With grades and sports! It is no wonder the mental health profession will be alive and well for a very long time. I of course have a very perverse view of the world, because I saw my son develop cancer and die. But I can honestly say, whether he I got all straight A's in my lifetime, graduated with honors, and so forth, in the long run really made NO DIFFERENCE. It had NO IMPACT on whether I could save my son and he could have a healthy and happy life. For you see there is more to living than grades, excelling in sports, and sheer competition. I wish most of the women I associate with could understand this, but this falls on deaf ears!

Today I continued writing. I realize I am burning out quickly. I apparently snapped one person's head off today, and another person on the phone said I sounded very down. So fortunately I am getting away for two days this week. I need time away from the computer. I know I am brain dead, because I am reading things and I can't even process what I am reading. 

I continued to write case examples from Mattie's cancer journey today. I am still on the patient advocacy section of the chapter. One of the examples I highlighted focused on the advocacy strategy of limiting! Limiting interactions between health care providers and the child, or in our case not only with Mattie but with ourselves. Research has shown that parents have to advocate at times to limit such interactions for their own sanity and for the effectiveness of care. Mattie's first oncologist was not a good match for our family. Peter knew this right off the bat, but I tolerated him for quite some time only because he was referred to us by Mattie's surgeon. But it was a mistake on my part to have put up with this doctor for so long, because it caused great tension between Peter and I. This oncologist was greatly insensitive. 

I could make a list of all the things he did, and you most likely would say, are you kidding???!! He once told me he was going to have a worse day than me, and you have to understand while he was telling me this, Mattie was getting a chemo infusion. Then one day, he told me he was taking his family to see the Lion King over Labor Day weekend. He was very excited by this, and then wished me a good Labor Day weekend. This was our first weekend holiday in the hospital! Weekends in the hospital are very isolating, but holiday weekends are like ghost towns! Get the picture? It only got worse! On one occasion, he even told me that he longed for the days when parents did not question doctors (my mom and Mattie's art therapist overheard this one!!!), or how about the time when he gave Mattie a placebo of saline solution because he did not believe he was really in pain. So he denied him pain meds. Only to find out minutes later that pain meds were absolutely necessary because Mattie was actually in pain (Mattie's nurse was LIVID)! Are these not bad enough? Then how about the time when he and a PICU nurse isolated me outside in the PICU hallway from Mattie because they believed that I was the reason Mattie claimed to be in pain. They believed that Mattie acted up around me for attention and without my presence would not have any issues with pain! Of course they were WRONG and if it weren't for Tricia (our HEM/ONC nurse extraordinaire), there would have been ONE dead PICU nurse and doctor in the hallway that day. The lesson learned is that parents need to advocate to switch providers and find oncologists who are better personality fits for their family. This is a very important part of the treatment process. It is not just a nicety, it part of the therapeutic alliance. If we couldn't connect, engage, and dialogue with the doctor in a meaningful manner about Mattie's care, then it was hard for us to trust him about medical decisions. 

Monday, July 21, 2014

Monday, July 21, 2014

Tonight's picture was taken on August 5, 2014. This is a day I will never forget. On this day we learned that Mattie's cancer case was terminal. As we were waiting to for his CT scan appointment, we went out to the hospital rose garden. A place, I spent a lot of time, whenever I got to escape the pediatric floor for a few minutes to get fresh air. Which was rare. Near the garden was this elephant statue, which was covered in tiles and other ceramic art work. Mattie posed by the elephant because his nurse Kathleen created a tile for the elephant than featured a message to Mattie on it! She called Mattie her "monkey boy!" Mainly because Mattie's left leg was nicknamed 'Curious George.' The left leg was the only leg which wasn't operated on and therefore, George moved around almost like an arm. The left foot, practically was hand like, so skilled that Mattie could pick up, open, and do lots of things with his foot. In many ways, this photo was the last happy moment before we learned about his terminal status. 


Quote of the day: In matters of truth and justice, there is no difference between large and small problems, for issues concerning the treatment of people are all the same. ~ Albert Einstein


I continue to be glued to my computer and am writing a book chapter! The parts I have researched and written already are currently being edited by the two researchers and clinicians who are working on the chapter with me. They are giving me comments and revisions which I have to address, but until they all come in, I am working on integrating Mattie's case into the book chapter. As such, I have introduced the reader to Mattie's overall case and then within each section am giving actual case examples that highlight the issues I am covering in the research. This may sound easy to do, but it truly isn't. If I had a lot of time, I probably could comb through the blog and find out exactly when each incident in Mattie's cancer journey happened and cite exactly how I wrote up the event when it happened. But I don't have that time. Instead, I have to rely on my mental data bank. Which fortunately is quite good. Thankfully I have had to present about Mattie's case at multiple conferences, medical grand rounds, and I write about Mattie so often. This keeps Mattie, our experience, and the lessons learned VERY fresh in my mind. As I sit and write this chapter, there are SO many examples I wish to highlight in this book chapter. But I am picking the most salient ones. 

Tonight's picture, captures one of the salient examples I wrote about today in the section of the chapter about patient advocacy. There was a research study conducted on patient advocacy that assessed what forms of advocacy parents use when caring for their children. One form is called PERSISTING. That makes perfect sense to me and it was a strategy Peter and I used ALL the time, I just never put a name to it. If it wasn't for our persistence, Mattie would not have been diagnosed as terminal on August 5, 2009.  

After Mattie completed 9 months of chemotherapy, three limb salvaging surgeries, and a sternotomy to remove 9 lung tumors, we thought his treatment was behind us. At that point, we focused on his rehabilitation and despite Mattie's weakened condition he participated in an intensive course of physical therapy. With the goal of trying to retrain him to walk, so he could potentially return to school in the fall of 2009. However, Mattie kept complaining of pain, he was unable to eat and couldn't even drink water. He survived on IV fluids alone! I kept bringing this to the attention of his doctors. Instead of listening to me, they felt that his not eating was a side effect of the chemotherapy, or his manipulation for control, or worse his addiction to pain medication. None of these explanations made sense to me and over time, as I saw Mattie not getting any better, I insisted that he be scanned. It was through a sonogram, followed by a CT scan that we learned Mattie's cancer spread to his liver and his lungs. Basically that his case was terminal. The lesson learned was that doctors have to listen to their patients and their family members. Sometimes cancer doesn't follow a road map, a scientific plan! Despite being off of chemotherapy for six weeks, and though it seemed impossible to them that his cancer could come back SO SOON, it did! With a  vengeance. Meanwhile Mattie was suffering in enormous pain. I also wrote about the fact that before suggesting to parents that they are to blame and are being manipulated by their child, that doctors may want to rule out all physical possibilities for the symptoms mainly because what doctors say to parents can have devastating and life long consequences. 

Sunday, July 20, 2014

Sunday, July 20, 2014

Tonight's picture was taken in July of 2008. We took Mattie to the DC Aquatic Gardens that day. The reason I decided to repost this photo tonight (since I believe I posted it recently on the blog) is because Peter and I visited the Gardens today. Mattie loved the Aquatic Gardens and for good reason. They are a very unique place to visit, especially in July when the Lotus flowers are in bloom! Today when we visited, I remembered this exact photo and Mattie walking through the Gardens with us. 


Quote of the day: The lotus is the most beautiful flower, whose petals open one by one. But it will only grow in the mud. In order to grow and gain wisdom, first you must have the mud --- the obstacles of life and its suffering. ... The mud speaks of the common ground that humans share, no matter what our stations in life. ... Whether we have it all or we have nothing, we are all faced with the same obstacles: sadness, loss, illness, dying and death. If we are to strive as human beings to gain more wisdom, more kindness and more compassion, we must have the intention to grow as a lotus and open each petal one by one. ~ Goldie Hawn

Usually when we drive into the parking lot of the DC Aquatic Gardens it is EMPTY! Mainly because the park is off the beaten track in DC. But today, WOW, the parking lot was FULL. We practically got the last parking space. That is because this weekend was the yearly Lotus Festival at the park. Thankfully the event was yesterday and we missed the music, kids activities, and other fanfare. This would have been something we would have craved if Mattie were alive, now this is something we migrate away from. 

Thankfully despite the crowds of people, everyone was quiet and was there to enjoy the serenity of seeing the lotus flowers and all their beauty. The lotus is native to Tropical Asia and Queensland, Australia, and it is commonly cultivated in water gardens. It is also the national flower of India and Vietnam. In the classical written and oral literature of many Asian cultures the lotus is present in figurative form, representing elegance, beauty, perfection, purity and grace. The flowers, seeds, young leaves, and roots are all edible. In Asia, the petals are sometimes used for garnish, while the large leaves are used as a wrap for food. So besides its beauty, it is also a very versatile plant. Peter snapped some glorious photos today! I will share a few with you because I don't think my words can do these sightings justice.

Lotus flowers in their glory! Some are more whitish and some are a deeper pink. 

It is fields and fields of lotus flowers in the heart of DC. The irony is if you come a few weeks from now to the DC Aquatic gardens you WON'T see this! The flowers will be all gone. All you will see are the green leaves. It is like a special gift that you wait for all year long to be unwrapped and that is why many people came out this weekend for the viewing. It is breathtaking and worth the trip. 

The incredible color closeup! A gift that only nature could produce!

Peter caught for me the life cycle of the Lotus. It starts as a bud. Then the bud opens up into a flower. Once the flower blooms and the bloom dies off, what is left is this pod like thing. The pod looks like a shower head to me. In this case the shower head is green. Do you see it!? You may recall seeing these shower heads in flower arrangements. Sometimes they are used when they turn brown. 

In addition to incredible lotus flowers, the Gardens have water lilies. Claude Monet would have loved this setting. In fact, there were painters with their canvases set up right by the ponds and lilies today! No surprise given the incredible setting and subject matter at hand. It is an impressionists dream!

I am not sure I have ever seen purple
water lilies!

In honor of Mattie, Peter captured a series of cuties today. This tiny turtle was the first sighting. 

This dragonfly was the second sighting. It almost seems like this dragonfly is staring at Peter with its beady eyes. 

The third sighting which I did not even see was Mr. Frog! Peter found him hiding! Mattie would have gotten a huge kick out of this frog. I love how the frog was staring at Peter. Apparently he was staring at me too, but it was only when I got home and looked at the photo, did I actually see him!

I leave you tonight with this spectacular sight! If you live in the DC area, it is worth a trip to the Aquatic Gardens while these beauties are still in bloom!

Saturday, July 19, 2014

Saturday, July 19, 2014

Tonight's picture was taken in July of 2007. Mattie went from a child who hated the water and bath time to one who you couldn't kick out of the tub. He could spend hours in the water if you let him. This was Mattie's rendition of "Santa Mattie!" A character he played often in the tub. He could play a whole cast of characters when taking a bath and mind you he never bathed alone..... there were always cars, trucks, and toys in the tub with him. It was always a party in there, which was why bath time was a major production!


Quote of the day: "I used to go and flatten my nose against that window and absorb all I could of his art," she once wrote to a friend. "It changed my life. I saw art then as I wanted to see it." ~ Mary Cassatt, speaking about how Edgar Degas transformed her life

I had a relatively computer free day today. Which was absolutely needed given my mental state. Peter and I took a five mile walk through Washington, DC and along our journey we passed this Sponge Bob mailbox. If Mattie could have seen this he would have gone absolutely hysterical. I am NOT a Sponge Bob fan, but in honor of Mattie, I posed by it! This mailbox is on Pennsylvania Avenue and it gets a lot of tourist attention. In fact, Peter snapped a photo of a family in front of the mailbox right before taking my photo. 

Our destination today was the National Gallery of art. We wanted to see their special exhibit entitled, Degas/Cassatt. Some how when I go to museums in DC, I can't help but think of my friend Margaret. She was my museum buddy. In fact my only friend in DC who really enjoyed going to museums with me. We had the same interests, went through exhibits in the same way (THOROUGHLY reading every placard and then discussing them!), and together we had a way of bringing the art alive. As I stepped foot into the Museum today, it reminded me of who I lost on June 1 and the tragic way I lost my friend. 

The Huffington Post wrote an article/conducted an interview about the exhibit Peter and I saw today, and entitled it, "An exquisite exhibit." I attached the link here in case any one wants to read it: http://www.huffingtonpost.com/christian-josi/a-most-exquisite-exhibit_b_5281656.html. Do I think Degas and Cassatt were extraordinary artists? Indeed, but do I think this exhibit was extraordinary? Absolutely NOT! I hate to break it to the National Gallery! I even got the audio tour too, so I can't say I missed out on content. But unfortunately the content wasn't to be had! Instead, I had to come home and spend an hour or more of my own time to learn about the lives of Degas and Cassatt. Seems to me that is counter intuitive of going to a museum. There was virtually no biographical information about Degas and Cassatt within the exhibit. If they are expecting people to know this off hand, I think that is a stretch. 

The exhibit intimates that there is a great relationship between Degas and Cassatt, however, they really do not go into detail about what level of closeness we are talking about. This troubled me to NO END, especially as I moved from room to room and kept observing the art work which I will highlight for you below. So I found that the exhibit left me with many unanswered questions, which I had to come home to answer. Perhaps human dynamics do not intrigue every museum goer, but it seems to me the way the National Gallery had set up this exhibit, the question of whether Degas was IN LOVE with Cassatt???? practically screamed off the canvases to each museum attendee! 

(Overview from the National Gallery) Mary Cassatt, American born, made her debut in 1879 with the group of artists known as the impressionists, her name has been linked with French artist, Edgar Degas. Cassatt stated that her first encounter with Degas’s art “changed my life,” while Degas, upon seeing Cassatt’s art for the first time, reputedly remarked, “there is someone who feels as I do.” It was this shared sensibility as much as Cassatt’s extraordinary talent that drew Degas’s attention. The affinity between the two artists is undeniable. Both were realists who drew their inspiration from the human figure and the depiction of modern life. Both were highly educated, known for their intelligence and wit, and from well-to-do banking families. They were peers, moving in the same social and intellectual circles. Cassatt, who had settled in Paris in 1874, first met Degas in 1877, when he invited her to participate with the impressionists at their next exhibition. Over the next decade, the two artists engaged in an intense dialogue, turning to each other for advice and challenging each other to experiment with materials and techniques. Their admiration and support for each other endured long after their art began to head in different directions: Degas continued to acquire Cassatt’s work, while she promoted his to collectors back in the United States. They remained devoted friends for forty years, until Degas’s death.

"At the Theatre" by Mary Cassatt. Cassatt loved to paint women and the reality of every day scenes. Over time her subjects seemed to change from aristocratic scenes and women to that of mothers and their children. Nonetheless, her scenes were always real and candid.

"The Loge" by Mary Cassatt. These two young women were at the theatre, being chaperoned of course. In the 1870s, this was the only respectable way women could meet men. Notice that the women were NOT wearing jewelry. Jewelry was worn by married women only. Which explains the velvet choker around the young girl's neck. The only flair and adornment allowed were the fans and flowers worn by these unmarried girls.   

"Rehearsal in the Studio" by Degas. While Cassatt liked painting people observing the movement, Degas preferred painting the movers! He loved capturing people behind the scenes such as dancers. 

"Girl in the blue armchair" by Mary Cassatt. The period leading up to Cassatt’s debut with the impressionists 
in 1879 was one of keen experimentation for both artists. They worked closely together during this time, exploring new and 
unconventional media. The most intriguing work to result from this intense dialogue was this one. With its loose brushwork and light palette, it is arguably Cassatt’s first true impressionist painting. In fact through infrared technology, they have discovered that Degas actually worked on the background of Cassatt's painting. He really revamped the whole background in a way. The dog at one point was on the floor by the couch, rather that on the chair. If you look closely, you can still see the covered spot on the floor where the dog used to sit. Also Degas extended the painting in height. In Cassatt's original work, it cut off right above the girl's head and there was no back corner where the sunlight is now coming in!

 (info from National Gallery website:) "Scene from the Steeplechase: The Fallen Jockey" was one of Degas' most ambitious early works. Painted in 1866 for exhibition at the Paris Salon, this painting marked a transition from the classically inspired history paintings of his youth toward the depiction of subjects drawn from modern life that would dominate his art for the rest of his career. The subject he chose was both fashionable and relatively novel: the steeplechase. First introduced into France in the 1830s, the steeplechase was—and remains today—a dangerous and at times controversial cross-country obstacle race. The sense of immediacy the painting seeks to evoke contrasts sharply with the artist's own working method, which was complex and painstaking. Degas produced several preparatory drawings for this painting, including several of the fallen jockey for which the artist's younger brother Achille served as model. Despite his efforts, neither the contemporary appeal of the subject nor its impressive dimensions piqued the interest of the critics, and it passed largely unnoticed. Soon after the exhibition closed, Degas appears to have reworked at least part of the canvas. It was but the first of at least three transformations carried out by the artist over the span of some thirty years. In 1880, with the intention of selling the painting to Alexander Cassatt, the brother of the painter Mary Cassatt, Degas began reworking the painting a second time, altering the original composition and introducing another horse. Dissatisfied with the results, Degas refused to release the painting. In a letter to her son, Cassatt's mother observed bleakly of the painting: "I doubt if he ever sells it—he says it is one of those works which are sold after a man's death & artists buy them not caring whether they are finished or not." In the mid-to-late 1890s, Degas returned to this painting a third time, transforming its appearance even more dramatically by adding an overlay of vibrant color to the sky and the jockey's silks. Virtually every inch of the canvas was reworked with one notable exception: the delicately painted face of the fallen jockey—Achille, who had died in 1893—was left untouched. True to Mrs. Cassatt's prediction, the painting remained in the artist's studio until his death.

There was one room within the exhibit that featured sketches Degas made of Mary Cassatt at the Louvre. Cassatt was the woman with the umbrella. Not just one sketch mind you, BUT MANY! The audio tour skirted around this by saying that he needed a subject for his scene or something like that. I wasn't buying it. 

Then on the next wall we saw a series of etchings by Cassatt. These etchings were entitled "The Visitor" by Mary Cassatt. Keep in mind they were a SERIES! MANY!!!! Guess what? Degas bought all of them. Degas had over 100 of Cassatt's works in his home. The exhibit kept pointing to the fact that they admired each other's work, understood each other, spent time with each other, and so forth. That he sketched her, painted her, and collected a great deal of her works. When you look at this exhibit what came to my mind was he was in love with her. 

When you read the Huffington Post link above, and see the response to just that same question posed to the National Gallery representative, her response is NO. That they did not have a romantic relationship. That this did not interest either one of them! That may indeed by the case. But one does not need to be romantically involved with someone to be enamored, obsessed, and captured by a person. I would say that was what Degas was with Cassatt. Certainly I can't know this for sure, but his art work spoke volumes to me. 

This painting is entitled "Mary Cassatt" by Degas. Degas painted this when Cassatt was in her 30s. At the time, he wanted to show the serious, intense, and persistent side of Cassatt. In all intensive purposes, he painted it devoid of feminine attractiveness. It was to prove a point about her brilliance. Of course when one is in their 30s, that makes a wonderful statement. Yet as Cassatt aged, she did not value this painting nor the statement it made anymore. In fact, she hated the painting and did not want it in her home any more, and wanted to sell it. But she also did not want anyone to know that this was her depicted in the painting. Ultimately, she was very explicit that she did not want it going to an American collection because she didn't want her name attached to it and the American collectors knowing it was her. Ironically, it now hangs in the National Portrait Gallery in Washington, DC with her name very much attached to it. 

It saddens me that Cassatt's wishes about this painting are known and yet despite that no one has a problem displaying this painting for the world to see. She apparently has an heir, and I guess this woman has no problem with Cassatt being on display, but if it where my family member's wishes, I would think twice about it. I also wonder what was the deeper emotion behind the disgust with this painting? To me it points to a bigger falling out between Degas and Cassatt and frankly I wish the exhibit gave us a better understanding of their lives together. They hinted at it, but I felt like Hansel and Gretel today at the National Gallery. I was picking up bread crumbs on a trail and instead found a half eaten ginger bread house. 

Friday, July 18, 2014

Friday, July 18, 2014

Tonight's picture was taken in July of 2008. Literally two weeks before Mattie was diagnosed with cancer. Rather ironic in a way, because to me, Mattie looks like the picture of health. Yet there are many people who are diagnosed with cancer, who I have heard also felt fine right before they were diagnosed. That notion is frightening to me. That weekend we took Mattie for a walk on Roosevelt Island. As was typical, Mattie found a branch along his walk and claimed it. He most likely took it home with him that day and added it to his stick collection. Do notice the orange shirt. Mattie gravitated to the colors, orange and red. They were bright, bold, and strong which he loved, and these are colors which represent his Foundation today. 


Quote of the day: Courage does not always roar. Sometimes it is a quiet voice at the end of the day, saying, 'I will try again tomorrow.' ~ Mary Anne Radmacher

I spent a good chunk of the day by the computer and at this point in time, my computer and I have a LOVE/HATE relationship with each other! My eyes hurt, as well as my head. But most of all I am simply tired. More sheer exhaustion than anything else. I came into this project exhausted. I can tell my level of exhaustion, because as I am writing, I can't follow my train of thinking or the words I am stringing together. Which is very unusual for me. I typically do not have trouble concentrating. 

Therefore as it is 9pm, I am having the courage as tonight's quote implies to say that I will try again tomorrow. I am backing off of the computer and going to clear my mind. 

Thursday, July 17, 2014

Thursday, July 17, 2014

Tonight's picture was taken in July of 2009. Mattie was pictured here with his buddy Maya. Maya is a clinic patient, but does not have cancer. She was the only same aged friend that Mattie made while at the hospital. Otherwise Mattie preferred much older friends! Mattie related to Maya. Maya is a lot like Mattie.... bright, engaging, very verbal, and speaks her mind. In fact, they met one day in clinic while sitting around the art table. Maya made a comment about not liking IV sticks and as soon as Mattie heard that, out of no where, he piped into the conversation and began talking. Which was unusual for him! From that moment on, they just clicked and played very well together as this photo clearly showed. They were quite creative together. In this scene they transformed a cardboard box into a planet and there were alien creatures involved. They performed a show for all of us who were willing to watch the entertainment that day in clinic and the show even had musical numbers!


Quote of the day: I roamed the countryside searching for answers to things I did not understand. Why shells existed on the tops of mountains along with the imprints of coral and plants and seaweed usually found in the sea. Why the thunder lasts a longer time than which causes it and why immediately on its creation the lightning becomes visible to the eye while thunder requires time to travel. How the various circles of water form around the spot which has been struck by a stone and why a bird sustains itself in the air. These questions and other strange phenomena engaged my thought throughout my life. ~ Leonardo Da Vinci


This coming September Peter and I will be acknowledging the fifth anniversary of Mattie's death, and yet despite the progression of time, there are aspects of grief and day to day living that I would say I/we still haven't mastered. I struggle with the fine balance of the need to isolate and protect myself from those I used to know (who are mothers) to finding ways of remaining connected. Either extreme doesn't work...... complete isolation or complete connectedness. Complete connectedness can't work because we no longer do the same things, we do not travel in the same social circles, or have the same interests. That is directly because Mattie died. I am not connected to a school, I am not raising a child, and therefore the typical mothering things one discusses and those stresses are off the table for me now. I have been instantly moved into the empty nester category. Except the one big problem is I am not an empty nester, my child doesn't exist. I have no one to check on, but have a lot of emotional baggage instead to live with. I assure you this is not pretty lunch conversation! 

It is hard to be around groups of women I once knew. Women in which we were united by our children! The natural conversation in these circumstances is our children. If Mattie were alive, I would be talking about him as well. They should be able to talk about their children and I should be able to hear about them, which I do. Yet, at the end of the day, I feel a greater sense of loss and a deep sadness because I can't explain why he is gone. People are talking summer camps and family vacations, and I am focused on the Foundation and writing book chapters about cancer. To me these are stark differences. Of course who said life is fair? I get it, know it, and don't like it. I guess as Da Vinci's quote seems to point out, I will always be looking for answers!

I came home and was feeling quite down. Rather teary. I bumped into Derrick, our complex's painter. He did not know how I was feeling but I was talking to him about my deck, which he painted for me in May! Which I was very grateful for, since without his help, I would never have gotten it together this spring! In any case, for the longest time Derrick has wanted to do a diamond pattern on my deck floor. So this afternoon, he came on over and repainted the floor. It was a lovely treat. While I was writing on the computer, I had my window open, the fountains going, he had his music on, and we were working in tandem. Some how it was wonderful company and as I told him, his diamond pattern reminds me of the beautiful pattern painted on the Cape Lookout Lighthouse in North Carolina! So I love it, I couldn't envision this, but thankfully I let Derrick convince me to do this! 

Wednesday, July 16, 2014

Wednesday, July 16, 2014

Tonight's picture was taken in July of 2009. Literally a month before we found out that Mattie's cancer was terminal. Amazing the difference a month, or a few weeks can make! We knew Mattie wasn't eating and he wasn't feeling well, but the doctors kept assuring us that this was just a side effect of the chemotherapy. Some how I did not believe it. Some how I suspected something wasn't right, mainly because I was listening to what Mattie was telling me. I believed him. I assure you I heard all sorts of explanations from the doctors, everything from he was manipulating me with starving himself to..... he was addicted to a pain meds! Honestly! I wonder if the doctors ever felt any sort of remorse for these statements? I am sure they did not lose a minute's sleep over any of these false presumptions, but I remember each of them! I love this photo because Mattie took one of his buckets from the hospital (he had a sense of humor!), and decided to make a pretend bug soup! I filled the bucket up with water and he threw in all his plastic bugs and I gave him a big spoon. He had a fun time concocting on the floor that day.  


Quote of the day: Most people who offer their help do it to make themselves feel better, not us. To be honest, I don't blame them. It's superstition: If you give assistance to the family in need... if you throw salt over your shoulder... if you don't step on the cracks, then maybe you'll be immune. Maybe you'll be able to convince yourself that this could never happen to you. ~ Jodi Picoult


This evening Peter and I sat down and were watching TV. We watched a show that I had never seen before on The Learning Channel called, Born Schizophrenic. I love watching shows about mental health issues and human interest stories. Fortunately Peter has a diverse set of interests and as long as the story is engaging and compelling, he is happy to watch along. Tonight's series captured his attention immediately. How could it not! It was the story of a couple in California who have two children. One of them is a girl named Jani, who at the age of six was diagnosed with schizophrenia. Which is VERY unusual. Typically this mental health disorder gets diagnosed in one's late teens or early adulthood, or at least older than 12 years of age. Jani was highly unusual. This particular episode of this series introduced us to Jani, her parents, and her brother. 

Peter was captivated by Jani's dad, who said that in his wildest imagination he never thought that children developed mental illnesses, much less that he would have a child with a mental illness. Why this resonated with us is because we say this to ourselves about Mattie, only replace the words mental illness with cancer. The disease is different but the sentiments expressed were exactly the same as we feel. As we were watching Jani's parents manage her disease, the stresses on their marriage and their concerns for their daughter's future, everything made perfect sense to us. One has to marvel at the strength, passion, and conviction of Jani's parents. They have really fought incredible odds to get her to the stable place she is at today. Jani's road has been challenging with a great deal of therapy, medication, love, and parent support. But if this wasn't enough to contend with Jani's brother has also been diagnosed with mental illness.  

Seeing tonight's episode about Jani further reinforced to me how life altering it is when something happens to your child. It turns your life around. Jani's parents are living proof. Their world has and will never be the same since they had children with profound mental health issues. Yet they take their role as parents very seriously and through all of this, they channel the frustration and pain to advocate and help others. Their story can't help but capture your attention and their daughter's journey truly shows what love, persistence, and what early interventions can accomplish. 

Story about Jani:

http://abcnews.go.com/Health/born-schizophrenic-mentally-ill-children-threaten-tear-family/story?id=23687000

Jani's Foundation:

http://janifoundation.org/