Saturday, January 11, 2020

Saturday, January 11, 2020

Tonight's picture was taken in January of 2009. That day Mattie received several gifts. One was a package filled with military badges. As you can see Mattie was wearing a few of them proudly! The other item he received was the wand he was holding. It was given to him by the owner of the Dairy Godmother (an ice cream) in Del Ray, VA. Not only did Mattie love the wand, but he loved the ice cream that came with it. I would say throughout Mattie's treatment, ice cream was a staple. 






Quote of the day: Sher (director of My Fair Lady in Washington, DC) grapples with the misogyny Henry has expressed all through the show by adding his own consequential tweak to the musical’s ambiguous final moments, when Eliza and Henry come face to face in his study, and he delivers that last command: “Eliza, where the devil are my slippers?” Is the demand ironic or presumptuous, or both? The answer the director comes up with will be left to you to discover. But the reaction of Mackintosh’s Henry as the lights go down feels as if it’s the one false note on an otherwise impeccable evening. ~ Peter Marks

Peter and I gave ourselves the gift of season tickets to Kennedy Center musicals this year. Today we saw My Fair Lady. I can't tell you how many times I have seen the Audrey Hepburn movie. Not just as an adult, but as a child. I feel like I grew up with the musical and frankly this is where the problem lies. Because in my mind, you can't possibly redo perfection. No one is Audrey Hepburn or Rex Harrison, and I caught myself in the first 15 minutes of the musical feeling very disappointed. However, as soon as I rationalized this, I then started to appreciate the actors performing in front of me for who they were. 

In a nutshell, My Fair Lady is supposed to take place in 1912 London. The story focuses upon a pompous phonetics professor Henry Higgins, who is so sure of his abilities that he takes it upon himself to transform a Cockney working-class girl into someone who can pass for a cultured member of high society. His subject turns out to be the lovely Eliza Doolittle, who agrees to speech lessons to improve her job prospects. Higgins and Eliza clash, then form an unlikely bond.

As I said the play takes place in 1912. However, the director clearly couldn't leave that era alone. Instead, he felt the need to modernize the play and have inter-racial marriages and transgender individuals integrated into the story line. I get it, we are in 2020, but if you plan to address such issues openly as we do today, then reset your play into modern times. Otherwise, I found myself confused as it is impossible to compare what you are seeing on stage to the 1964 movie. 

I would say the one aspect of the play that deserves mentioning is the stage set itself. This is the library scene, but picture this library on a revolving circular set. Or how about like a piece of a revolving pie. One slice is the library, another slice is the front hallway, another slice is the study Eliza learns in, and the final slice is an outdoor scene of the house. All these slices or scenery are part of ONE revolving pie! Literally as the characters are singing on stage, they were freely moving into different rooms. I have NEVER seen such a clever stage like this before. So as Eliza is singing we can literally see her walking from the study into the hallway of the house. Typically in theatre, you see the backdrops change behind the actors. But in this case, it almost felt like watching someone interacting with us in a real life setting. 

I did not take these photos mind you. I got them from Google, but I wanted you to see the amazing costumes. I would say the staging and costumes were amazing. Not to mention Lerner and Lowe's music. However, there were aspects of the play I disliked and the top of my list was the ending. 





The film clip below highlights the way the movie ended. In the movie it is quite clear that Eliza and Henry have come to an understanding and appreciate each other. You have no doubt understanding that Eliza has returned! In today's stage performance, you as an audience member see Eliza come back and we here her say the exact line as Audrey Hepburn did in the movie..... as it related to Henry's slippers. However, instead, of him smiling, she walks off stage.  I frankly don't know where she walked off to, other then back stage. I don't know if she remained in the house or truly what her intentions were. Looking at Henry Higgins face on stage, left me equally perplexed. I hated the ending big time and truly wonder why people feel the need to mess with a classic. My thinking is the director is trying to portray Eliza as a modern and strong woman. A woman who doesn't have to fetch a man's slippers. Honestly if the director felt the need to revise the ending, then I truly believe he never understood or appreciated the 1964 plot! As I did not need to see Audrey Hepburn walk off stage. It was quite clear she knew who she was, what she was capable of, and that she could hold her own with the good professor.

Click on this image below to see the trailer for My Fair Lady at the Kennedy Center:

Friday, January 10, 2020

Friday, January 10, 2020

Tonight's picture was taken on January 8, 2009. I will not forget this day ever. That day, Mattie went for a bone scan. In order to take such a scan, Mattie wasn't allowed to  eat or drink anything since the night before. So that alone makes one feel unstable. But in Mattie's case, he had the bone scan from hell. Literally he had to have been on that scanner for three hours. The tech just kept taking more pictures. Mind you Mattie did not like scans what so ever, and typically did not do them without sedation. But the deal was if Mattie complied with the scan, we would go out to lunch on the hospital's campus with his child life specialist and art therapists. So Mattie was motivated to comply. However, asking anyone to sit still for three hours is over the top. Finally I confronted the tech and asked him WHY he kept taking more images. Needless to say, the radiologist had to come out and talk with me, since he was the one requesting more images from the tech. Turns out the radiologist was concerned about the areas where Mattie had prosthetics. The scan lit up in these areas and I am sure it looked cancerous, until he understood that Mattie had limb salvaging surgery. We even connected the radiologist with Mattie's orthopedic surgeon to verify what I was reporting. Any case, after the scan was finally complete, we went for lunch, and the restaurant on campus served food that they grilled and cooked right in front of you. The cook was playing games with Mattie, and our laughing through lunch was caught on camera. 


Quote of the day: The great solution to all human problems is individual inner transformation. ~ Vernon Howard


As it is the second Friday of the month, I had a licensure board meeting today. What I thought was going to be a short meeting, turned out to be long.... try close to six hours to be precise. It is a real commitment of one's time and focus. But I have been doing it for a while, and in all reality, the meetings now are short in comparison to meetings in the past (before I was chair). Back then it wasn't unusual for meetings to run 8-9 hours. 

I have been in this position for a long time and honestly there have been times I wanted to step down. But the staff feel my historical knowledge as it relates to our laws and regulations is important and therefore, insist I stay on. Which of course is a nice feeling that someone values the work that I do, and trusts my judgment and insights. In contrast, this week I found out that I will not be awarded Mother of the Year. Certainly that is no big deal, but since I was nominated for this with American Mothers, I took the application seriously. It wasn't a simple application either, because I had to respond to several essay questions and also get letters of reference from those who work with me. Mind you this is not something I would have ever applied for, because I know how organizations like this work. In that they award from within. In addition to this, I was certain they weren't going to award a woman whose child died. After all that doesn't make for a happy story! Nonetheless, out of respect for the person who nominated me, I completed the process. 

But you know when you find something annoying? When something bothers you and you can't pin point why? Well this is how I feel about this whole application process, not to mention the fact that once I applied, I was getting emails from the organization weekly. Last night, I had just about enough and found a way to remove myself from all communications. But what bothers me is that I feel they did not take my application seriously. When it comes to being a mom, I don't have anything to verify my role or to assess that I am a good mom. After all, I don't see this as most parents do...... by observing their child and getting feedback in very external ways. So to me, getting rejected is upsetting, because to me I equate that to someone telling me I am not a good mom to Mattie. Certainly not rational, but feelings aren't always rational. So right now, I am angry. Angry that I wasted my time with this award application and angry that they can't possibly appreciate what my motherhood experience has been like.  

Thursday, January 9, 2020

Thursday, January 9, 2020

This photo was taken on January 11, 2009. We took Mattie back to NYC to start an experimental treatment. When in New York, we stayed at the Affinia Gardens, close to Memorial Sloan Kettering. I will never forget our hotel experience there, as everyone was LOVELY! Literally we checked into the hotel and the front desk staff took one look at Mattie and the next thing we knew, they upgraded us to an incredible suite. It was at the top floor with an incredible view of the city, it had two bedrooms, a full kitchen, patios, you name it! Though Mattie couldn't walk much, he did stand and took a few steps in this amazing space. 


Quote of the day: Winter blues are cured every time with a potato gratin paired with a roast chicken. ~ Alexandra Guarnaschelli

I absolutely agree with the author of tonight's quote! The bright spot of winter is winter foods! It is a real shock to the system to go from warmer weather back to our winter. Of course owning a dog, regardless of the weather, you have to be out and about in it!

Today, Sunny went for grooming. I am sure the average person would think I was nuts, as Sunny goes to Chantilly, VA for grooming. That is about a 40 minute drive for me each way. Why do I do this? Well I met Sunny's groomer in Alexandria, VA, back in 2016. However, she has changed workplaces multiple times and with each change I follow her, as she has a good rapport with Sunny. Any case, after his grooming today, we took Sunny to Walker Nature Center in Reston, VA to walk in the woods. 

I am quite familiar with Reston, because when I was in graduate school, I had a very close friend who lived there. Reston is a planned community and as such it is very well laid out. Communities have beautiful properties and access to walking trails, water ways, shopping centers, and restaurants. The beauty of it is that it doesn't look built up, and this was the sight we saw along the Walker Nature Center walking trail.  

What you can't see is that there were houses all around, lining the woods! So literally the owners of these homes have these walking paths in their backyard. It is a great place to walk a dog, and to move around in peace. Unlike the city! 

Of course, I can't help but associate Reston with my former friend. I say former, because after 15 years of friendship, she severed it. Her family felt that Mattie's death was too much for her and therefore they advised her not to continue our friendship. They felt that was in her best interest. Do note that at Mattie's funeral, my friend did not attend. I was concerned about her since I did not see her at the funeral. So I reached out to her. It was when I reached out to her that she told me she couldn't talk to me anymore! She did not even have the courage to tell me that herself, and frankly if I did not confront the issue, I most likely would never have heard from her again. I have trouble understanding her family's logic, but after Mattie died, I didn't have the energy or where with all to argue over this decision. She wanted to walk away, and I let her. It is yet another lesson I learned through Mattie's diagnosis. The people you think will be by your side and remain there, don't! 

Wednesday, January 8, 2020

Wednesday, January 8, 2020

Tonight's picture was taken on January 12, 2009. Mattie was in NYC at Memorial Sloan Kettering. He needed to go to New York in order to qualify for an experimental treatment option. It was started in NY and then the drug was administered weekly at his hospital in Washington, DC. Needless to say, with the first dosage, Mattie got sick, and had a raging fever, was shaking like a leaf (which is referred to has rigors), and needed demerol (February 13, 2009's blog discusses the reactions to MTP, the experimental drug to a T). However, unlike at Georgetown, Sloan Kettering sent us back to the hotel after Mattie received his first dosage. They did not even keep him for observation. Needless to say, his reaction was severe enough that we had to come back to the hospital. In fact, at Georgetown, it was in Mattie's medical chart that he could not be released after receiving the weekly experimental drug. He needed to stay for several hours there after for observation, because trying to manage the side effects at home would be impossible. 


Quote of the day: Life isn't about your age. Life is about living. So when your birthday comes be thankful for the year that has just past and anticipate with a happy heart what the coming year will bring. ~ Catherine Pulsifer

I am not sure if I celebrated birthdays the same way before Mattie died! But now they mean more to me, especially since I realize no birthday is guaranteed. Today I got together with friends to celebrate Jane's birthday. Three of these women I met during Mattie's preschool days (Catherine, Jane, and Ann). The fourth lady in the photo is Peggy. Peggy is now a Mattie Miracle board member and is our largest fundraiser for the Foundation several years in a row. 


The restaurant we went to today likes to celebrate birthdays. So much so that when they bring you your dessert, they put on the music..... 16 candles (by the Crests). Naturally if you want to celebrate your birthday quietly, it isn't going to happen at this restaurant. I was introduced to this restaurant in Old Town, Alexandria by my friend, Margaret. Margaret was Mattie's preschool teacher and unfortunately is no longer with us as she died from ALS in 2014. Nonetheless, whenever I go to Le Refuge, I think of my friend Margaret. Ironically, I met Catherine and Jane in Margaret's classroom, as all our children were in Margaret's class. 

In any case, today's lunch topics were heavy, as they ranged from illness to death. Needless to say I listened and absorbed all the topics and probably to no surprise, left feeling not upbeat but depressed. As I know illness and death quite up close and personal, and to me it is even worse when its the death of your own child. 

Tuesday, January 7, 2020

Tuesday, January 7, 2020 -- Mattie died 536 weeks ago today. 

Tonight's picture was taken in January of 2009. Mattie's friends gave him this BIG Scooby Doo balloon. He was very happy to receive it as Scooby was one of his favorite characters. You can see the amount of Legos and toys that were pilling up all around us. Since we spent little time at home, our home was slowly being transformed into a warehouse. As Mattie received gifts and toys daily from the hospital and friends. All of these items were greatly needed to engage Mattie and to pass the endless about of time we spent confined to a hospital room. Nonetheless, by the time Mattie died, our home became practically unrecognizable. That is how much stuff was accumulated in one year!


Quote of the day: To have memories of those you have loved and lost is perhaps harder than to have no memories. ~ Hugh Jackman

Things came to a stand still in Washington, DC! Why? Well there was a threat of an inch of snow. Honestly our region needs to get a grip on reality! What we experienced in DC was purely rain. Sure we saw some of the white stuff for a few hours but it is too warm for it to stick and accumulate. 

Despite the grayness and cold, Sunny LOVES to come out on our balcony and sit and watch the traffic. He refuses to spend time on our deck, but this bird's eye view he loves. 

Yesterday, I met with a friend and she was telling me she just saw the musical Wicked in NYC. As she was telling me the plot, I honestly couldn't follow her..... at all! Mind you I have seen Wicked twice, both times were before Mattie was diagnosed with cancer. 

My friend was talking about the musical and how it affected her. I wanted to be able to respond to her, but it was hard because my recollection of the musical was SO SO different. I joked with her, because it was like she and I saw two different shows. I was so perplexed by this that I came home and talked to Peter about this discrepancy! However, he did not remember the plot that my friend described either! So at least this memory lapse isn't confined to me alone! I then went on the internet to see if the plot of the musical has been altered or expanded since I saw it early on when it was first released. However, I found nothing to indicate that the story line changed! What changed was me! A rather frightening notion, but I do think Mattie's cancer and death has had a profound impact on us. Some of the changes are subtle and some are very significant. 

Monday, January 6, 2020

Monday, January 6, 2020

Tonight's picture was taken in December of 2008. Mattie's "girlfriend," Charlotte, was celebrating her 7th birthday. Mattie loved Charlotte and I know he was happy he was out of the hospital and could attend her party. As you can see he was sitting right next to her and was trying to help blow out her candles. I actually learned a great deal from Mattie and Charlotte's friendship. Charlotte was a devoted friend to Mattie and visited him often in the hospital. Even though there were times that Mattie was personally angry and upset with his situation and as such it affected how he related to people. Charlotte, though 6 years old, seemed to intuitively get this and never waived in her commitment to Mattie. If that is not friendship, I don't know what is. 


Quote of the day: Listening is a magnetic and strange thing, a creative force. The friends who listen to us are the ones we move toward. When we are listened to, it creates us, makes us unfold and expand. ~ Karl A. Menniger

This is the state of affairs in our home! We have two VERY clingy pets right now. In fact, Indie is sitting in my lap while I write the blog. Totally unheard of, since I view her at Peter's cat! 

Sunny is staying close and also helping himself to the couch, beds, and anywhere he feels comfortable! 

This evening, Indie has attached herself to Peter! Anyone who says animals don't feel things like humans is wrong. Animals are very sensitive and these two are very happy to be back home with us. 

Ironically we bought a bigger couch this fall. Yet even so, there is no room on it for me! 














My morning started off by participating in a psychosocial research study. I was interviewed for 90 minutes by a researcher at Children's Hospital at Philadelphia. I am familiar with her, as I have met her in person before and have great respect for her work and also am impressed with her genuine understanding of the issues children with cancer and their families face. This is a psychologist who is well respected in the field and is a leader in psychosocial research. Yet what was she saying? She was basically thanking me for MY CONTRIBUTION and for being the visionary for the Standards of Care. Standards which she says guide her practice and that of the institution. Keep in mind that Children's Hospital of Philadelphia is one of the premier cancer treatment sites for children in our country. 

Though I was a research participant, I found the conversation we had THE GIFT! Mainly because I felt that my insights with Mattie's care, will help shape an assessment tool that is being designed to help screen children/families who are at risk, and this tool will ultimately enable children and families to have a higher quality of life. If psychosocial issues are assessed for early on, then support can be provided before a crisis unfolds for the child and the family. 

One of the comments I provided to this researcher today was that I was always stunned that Mattie's medical treatment team never realized he could potentially develop medical traumatic stress. In hindsight I truly don't get how they didn't conceive this as a possibility! Given Mattie had multiple bone cancer sites and need multiple surgeries. Surgeries which left him disabled. It was the perfect storm..... cancer and disabilities! It makes sense to me that profound issues would arise. Yet in Mattie's case it was ME who diagnosed the issues and demanded psychiatric care for Mattie. The team seemed clueless that medical care could lead to trauma! 

In any case, my point to all of this is when designing an at-risk assessment tool (survey), it is vital that the tool take into account the child's diagnosis and medical treatment plan. Because in my opinion certain cancer diagnoses put patients and families at higher risks for psychosocial issues than others. At the end of our 90 minute talk, I was offered an $100 gift card for my time. However, I told the researcher that I did not want the card, but instead I asked her to donate it to her psychosocial program or to a family in need. Because for me the gift was to be listened to, to be able to contribute to research, and to know that Mattie's experiences have enabled me to help others. 

Sunday, January 5, 2020

Sunday, January 5, 2020

Tonight's picture was taken in December of 2008. Mattie was home for the Christmas holiday and I am sure his care team thought this was in Mattie's best interest to discharge him from the hospital. However, the time home was an absolute nightmare. Mattie was dealing with intense pain and also this was when we saw PTSD symptoms popping up. It was overwhelming for us as Mattie did not want to be touched, he did not want to hear any noise, and basically he couldn't sleep! Because whenever he did, he would wake up screaming. 

This particular photo was taken after we received this creative gift from Mattie's art teacher. She got all the children in kindergarten to write or draw on one of the leaves attached to this wreath. It was a very thoughtful and meaningful gift that hung behind our front door for the longest time.


Quote of the day: Home is where you go to find solace from the ever changing chaos, to find love within the confines of a heartless world, and to be reminded that no matter how far you wander, there will always be something waiting when you return. ~ Kendal Rob

This morning Peter went to pick up Indie at the vet. Indie is a very sweet and easy going cat. In all reality, Indie is more like a dog than a cat. So she is super easy to board while we are away. Unlike Sunny!

Peter lets Indie sit in the passenger seat of the car on the way home and opens the lid for her to see out. Indie is so well behaved that she doesn't try jumping out of her box, but instead sits still and has Peter pet her along the drive home. 

Indie is thrilled to be home and got LOTS of attention from us before we picked up Sunny later in the day!

Meanwhile, this was Sunny's report card! Basically Sunny isn't a behavioral problem when boarded but what he does is he goes on a hunger strike! Each day I was away, I would get a text message from Dogtopia telling me Sunny wasn't eating his food. They tried adding in all sorts of goodies (peanut butter, pumpkin, chicken, rice, etc) to entice him, but Sunny is Sunny. He gets anxious and then refuses to eat! Though I would love to have Sunny stay in someone's home while I am gone, he has proven that he can't be trusted. As he ran away twice from two different homes. Therefore, Sunny gets boarded in a facility where I know escaping isn't an option. 

Peter captured some great videos today, which I have posted below for you to see. It helps you get some insight on Sunny. 

This video highlights Sunny's reaction to being picked up at Dogtopia. Though he did acknowledge Peter and me (which he doesn't always do during pick up!!), you will see he is very focused on the door and GETTING OUT! Click on the image above to see the video.

Sunny in the car. Check out his sighing!!!! Click on the image above to see the video. 

When we came home, Peter asked Sunny to find Indie. I think this video is priceless. Click on the image to see the video.