Saturday, February 25, 2017

Saturday, February 25, 2017

Tonight's picture was taken in April of 2004, during Mattie's second birthday party. The theme that year was TRAINS. Mattie absolutely loved trains.... all kinds of trains (Thomas, electric trains, Lego trains, etc). That year it was warm enough to serve cake outside on our deck. As you can see Mattie was standing right beside me as I was helping him eat cake. Back then, Mattie did not like to sit still to eat, so I was always shoveling food into him as he was moving. But notice the tell tale sippy cup.... full of milk. This was a Mattie staple, my joke was he drank so much milk, that we should have invested in a cow. 


Quote of the day: The way I see it, if you want the rainbow, you gotta put up with the rain. ~ Dolly Parton

This afternoon, before the weather changed to gray and raining, Sunny and I went out for our walk by the river. On our way home, he was transfixed by a tree! He wasn't looking at clouds or the sun..... but a squirrel. Squirrels get to Sunny every time. He can't wait to chase them, bark at them, and try to ultimately catch one. 

I have had many people observe Sunny chasing squirrels. For the most part people laugh, because I hold him so tightly that when he lunges forward I go flying. I have gotten used to him now, but I do have to prepare myself because Sunny is strong. However, there are many people who love the squirrels and one woman gave a lecture about Sunny's behavior... because she was afraid he will scare away the squirrels and then she won't be able to feed them! 

Meanwhile it is February and look what is popping up in Mattie's memorial garden, outside our front door. It is glorious to see these wonderful daffodils. Peter planted them years ago, and when I see them bloom, I know spring is coming. 

The crocus in Mattie's memorial garden. 

Tonight, we have been invited over to a friend's house for dinner. As a thank you to her for cooking, I bought some flowers and put together this arrangement. I always stick rubrum lilies in many of my arrangements because to me the fragrance is intoxicating! Super special in the cold weather months. 

Friday, February 24, 2017

Friday, February 24, 2017

Tonight's picture was taken in April of 2005, during Mattie's third birthday party. To entertain the children, I invited a George Washington University student who had an aside business as a children's performer. He had his own bunny, could do balloon animals and even a magic show. You can see Mattie petting Hobbs, the bunny. Hobbs was a major hit at the party, and Mattie absolutely LOVED the experience of petting a bunny on his own couch. 



Quote of the day: One person's trauma is another's loss of innocence. ~ Jodi Picoult


When I came across Picoult's quote tonight, I had to read it several times. At first I didn't get it but then it struck me.... Mattie was the traumatized and from that I lost whatever innocence I may have had. This quote is featured in a Picoult book that focuses on school shootings. But in all reality, the sentiments she expressed can apply to any trauma, and just like with any trauma, you can't discuss it without also discussing loss. 

The loss of innocence is pervasive and affects all interactions and relationships. Peter and I were talking tonight about our experiences going to childhood cancer conferences or even the hospital fundraiser we attended this year. Keep in mind that in these circumstances the dialogue is about childhood cancer, which should be a safe topic for us. Unlike our everyday world which for the most part has no direct childhood cancer experiences (THANKFULLY!). However, whether we are with others who understand childhood cancer or those who don't.... the end result is usually the same. A feeling of loss and isolation. Mainly because we don't feel that others truly grasp the traumatic experiences we endured and the loss we continue to live with. This is very evident at professional conferences, which are mainly attended by professionals helping children with cancer. They may do this for a living, but that is quite different from personally living with it! At the end of the day they go home and childhood cancer ends. This isn't true for those of us touched by cancer. But even in a room of other parents who have children with cancer or lost children to cancer...... I feel no camaraderie. I never have, which is why a support group setting would never work for me. 

When we were in Orlando, we funded a childhood cancer survivor (Melinda) and her mom to speak at our plenary session. Melinda spoke about her continuous feelings of isolation. Now, almost a decade after diagnosis. Melinda said she can be in a room filled with people who know her, and yet they don't really know her, or can appreciate your thoughts, feelings, and perspectives. It is a very daunting feeling to be this alone, to feel like you are screaming inside, and yet on the outside you look normal....just like everyone else. Hearing Melinda was almost an 'ah ha' moment for both Peter and me. What Melinda feels is exactly how we feel. Certainly we are not comparing ourselves to a person who has actually endured cancer treatment, but the aftermath in this particular case seems so similar. Not that it makes either of us feel better, but it does validate something that has been plaguing us for years. 

Thursday, February 23, 2017

Thursday, February 23, 2017

Tonight's picture was taken in April of 2004. We took Mattie to Roosevelt Island and as you can see he found some dandelions along the way. This was a tell tale Mattie sign... he always found objects in nature to collect, carry on his walk, and bring home with him. I think this photo was down right precious! A happy boy with his dad. Notice the red socks.... Mattie gravitated to red and he looked so cute in it. 








Quote of the day: It was such a spring day as breathes into a man an ineffable yearning, a painful sweetness, a longing that makes him stand motionless, looking at the leaves or grass, and fling out his arms to embrace he knows not what. ~ John Galsworthy

Today was a glorious spring day.... in the 70's! Absolutely unheard of for February. It is actually quite confusing to see people mulching yards and getting ready for Spring. Either they are early or my clock is all off. I am expecting winter and still entrenched in winter, so to me this is pleasantly disorienting. 

As you can see Sunny was patiently waiting for me to get ready this morning to take him for a walk. NO pressure!!! As Sunny becomes acclimated to us, more of his personality comes out. He herds and follows me ALL day long. I have to admit it is disconcerting at times, which is why his previous owner gave him up. But Sunny is a sweet heart and truly just wants to be part of the family. But this sight this morning just made me laugh. 


Sunny and I had multiple walks today and all I can say is..... people seem happier with spring like weather. I had more people say hello and stop and talk with me today. In fact, Sunny made a friend with a dog named, Lucy, by the waterfront. Lucy is a rescue as well, from the same shelter as Sunny! They got along great and followed each other for part of the walk. But I can't tell you the conversations I had today..... two women stopped me because they were having a reunion and wanted their photo taken. They then asked all about Sunny. Then I had toddlers with their parents coming up to us wanting to pet Sunny. Thank goodness Sunny is full of sunshine, and I don't worry about him being aggressive or mean spirited to anyone he meets. Now if you are a squirrel, you will see a totally different side of Sunny. But if you are human of any age or a dog, he is going to approach you with a wagging tail. 

Wednesday, February 22, 2017

Wednesday, February 22, 2017

Tonight's picture was taken in April of 2004. Peter came home from work and Mattie greeted him in our front hallway. As you can see I taped all sorts of activity pages to the wall. This was one of the activities I had at Mattie's birthday party. Typically kids can't draw on the wall, but at our party, they were encouraged to have this unusual fun. As you can see I left up the paper, days after Mattie's party. Mattie enjoyed the whole notion of being able to create on the wall. In retrospect, I am so glad I did this, and that Mattie had unique party parties. 




Quote of the day: Each patient carries his own doctor inside him. ~  Norman Cousins


Frankly I think most medical doctors need to go back to school. Sensitivity training should be mandated, and I also think some time as an actual patient for a few days in a hospital should be a requirement for licensure renewal! Aren't they lucky I don't sit on a medical licensure board as a community member?!!!!

Somewhere between growing up and getting a medical degree the basic common human decencies were lost. Not only lost but for some doctors completely extinguished with no hopes of ever returning. I believe doctors do not share Norman Cousins' philosophy that patients carry their own doctors inside of them! In fact, some doctors are threatened when asked questions or challenged. That to me is the sign of a very insecure doctor. 

The health saga with my dad continues. It is hard to believe that he went in for a simple colonoscopy two weeks ago to give insight into his medical issues, and instead of finding answers..... more medical issues were created. Such as not being able to urinate, at all. For two weeks this has been going on and his urologist is one for the books. Mind you this isn't a quack, but a well respected physician in his field. Of course, I have learned that doesn't mean much either! Why is it acceptable that a physician can be competent and skilled in his field and yet be an absolute nightmare to interact with.... having no regard for patients' feelings, fears, and concerns? Why can't competent and compassionate go together?

Now if you weren't able to urinate (with medical assistance) for two weeks, I am sure you wouldn't be happy. In fact you would be down right edgy, agitated and in need of answers. How is it that the doctor doesn't see this or have this insight? I haven't met this doctor but I want to throttle him. 

When my mom questioned the urologist today, the doctor snapped! Again, get a reality check Mr. Doctor! I am not sure what drives me absolutely batty.... the doctor's dismissive and patronizing tone, or his lackadaiscal attitude about the problem and not wishing to do further testing until Monday! All I can say is wow!!! If you have never had a bladder issue, I marvel at that, because issues around the bladder can be very painful and truly make you so uncomfortable that you can look mentally unstable. So here we wait! 

Tuesday, February 21, 2017

Tuesday, February 21, 2017 -- Mattie died 388 weeks ago today.

Tonight's picture was taken in April of 2003. Right before Mattie's first birthday party. While I was setting things up, Mattie was in his "tot wheels" and racing around our home. Mattie was in love with Elmo, so when it came time for a birthday theme, I naturally gravitated to that red furry Sesame Street creature. If you watched Mattie as he tuned into a Sesame Street episode you would laugh. Mattie was a multi-tasker and never really just watched TV. He was always creating, building, and moving around during Sesame Street. That is until Elmo came on the screen. Just the sound of Elmo stopped Mattie in his tracks. He would look up from whatever he was doing and his eyes would be transfixed on the screen. Totally glued until Elmo's portion ended and then of course Mattie returned back to playing. 


Quote of the day: We are like islands in the sea, separate on the surface but connected in the deep. ~ William James

Tonight Peter and I attended a dinner at the George Town Club for Dr. Aziza Shad. Dr. Shad was the chief of pediatric oncology at one time at Georgetown University Hospital. In fact, she was the doctor who was on call the day Mattie died. She managed that nightmare quite effectively, given that Mattie had to be put in a coma to die.

Aziza sits on Mattie Miracle's board and is now the chief of pediatrics at Children's Hospital at Sinai in Baltimore. I can't tell you how many times I have walked passed the George Town Club, and wanted to know what it looked like inside. It was an absolutely LOVELY event tonight. From the food, timing of things, and how they arranged us at the tables. It was a very intimate and elegant room, and they had place cards at the table. Typically I don't like this, but in this case, it worked out beautifully. 

I sat next to the founders of Scout, the functional and fashionable bag company. It turns out that one of the founders graduated from Mattie's school. It was a small world, and naturally we were connected because both of our children were cared for by Aziza. The feeling in the room was noteworthy, as Aziza was surrounded by patients and families who are committed to her. Such devotion doesn't just happen, it is earned. Aziza is the kind of doctor that will call or text message you back within minutes, at any time of day, and anywhere in the world. Totally unheard of, but she is that dedicated. So like tonight's quote points out...... so many of us this evening are separate in many ways, but through Aziza we are deeply connected. Connected through cancer, our desire to support the work she does, and gratefulness for her kindness to our families as we endured life's greatest challenge. Keep in mind that we know many of Aziza's supporters, as we met while Mattie was battling cancer. Though Mattie died and most of their children are alive, we all greatly respect each other. The yellow roses were our table display, and I was lucky enough to be given it to take home. Seems special on a Tuesday..... the day of the week that Mattie died. 

Monday, February 20, 2017

Monday, February 20, 2017

Tonight's picture was taken in April of 2003. This was at Mattie's first birthday. We decorated with an ELMO theme and as you can see, Mattie was transfixed on the cake. In fact if I were to have let Mattie loose, his hand or foot would have gotten right into the cake. Mattie was on, engaged, and always very alert. 

Quote of the day: There is nothing wrong with America that the faith, love of freedom, intelligence and energy of her citizens cannot cure. ~ Dwight Eisenhower

On this president's day, Peter is actually home from work. In the past, his company never gave him any National holidays off. I am glad that has changed this year. Indie and Sunny enjoyed having both of us home today. Because it was in the 60's, we have all the windows open and put our screen on our front door. Indie was in heaven. She hopped up on the counter to check out the window and went in and out of the screen door all day!

Meanwhile look what is blooming in Mattie's memorial garden. It is a welcomed sight and reminds me that soon spring will be here.

Sunday, February 19, 2017

Sunday, February 19, 2017

Tonight's picture was taken in April of 2003, during Mattie's first birthday party! I think Mattie was born ON! In fact my joke was he had two speeds.... on and off and nothing in between. Mattie did not quite understand the whole notion of a birthday party, but we decorated everything with Mattie's favorite character.... ELMO and invited family over. I had games for all the kids and Mattie observed everything. However, I would say because of Mattie's sensory issues, the noise from the party was overwhelming for him. I remember he and I retreated upstairs several times away from everyone because Mattie was truly upset and crying. Of course by year two, Mattie fully understood the notion of a party and was excited to be a part of it. 


Quote of the day: The day my son was born my life changed completely. ~ Treat Williams

This afternoon, Peter and I attended our God Daughter, Charlotte's first birthday party. I am sure it is very natural for most parents attending such an event to reflect on their child's first birthday! It is not unlike going to a wedding... you observe and celebrate the couple before you, but you also reflect upon your own marriage. So all I can say is this party brought up lots of thoughts, memories, and feelings tonight. 

Peter and I spent a lot of time holding Charlotte at the party. I snapped this photo of Peter with her. Peter is very good at entertaining little ones. Much better than me. I prefer truly working with talking beings. But Charlotte is a cutie and so calm, patient, and good mannered. 

Charlotte cooperated through LOTS of pictures. Practically everyone at the party had their photo taken with Charlotte, and she managed through each photo. I can assure you, this wouldn't have been Mattie's cup of tea. 

Me with Charlotte. 

During the party, I started talking to a woman whose husband is dying from cancer. She was getting ready to retire so they both could spend their future together, but of course she never planned for cancer severing that plan. I listened to her story and shared my thoughts, but never told her about Mattie. I find hearing about someone else's loss while experiencing your own.... NOT HELPFUL at all. 

Nonetheless, how does it feel for me to lose my only child to cancer and then attend a one year old birthday party today? If I said it was easy, I would be lying. I try to be happy for the proud and happy parents, but of course a part of me says..... I was in their same shoes at one time and then my world came crashing down. I don't understand and most likely never will why some children are chosen to get cancer and die.