Saturday, December 19, 2015

Saturday, December 19, 2015

Tonight's picture was taken in December of 2002. Mattie was 8 months old and therefore it was his first Christmas with us. I remember wanting to take the PERFECT photo of him for the cover of our family Christmas card. Literally I brainstormed how and where this photo should be taken. Then we had an early snowfall in November. The snow inspired me. I dragged Mattie's entertainment saucer onto our deck. I covered it in a red plaid blanket, dressed Mattie up in his Santa suit, and out he went. He did not know what on earth was happening. Peter and I were on the deck, jumping up and down trying to get Mattie's attention and to get a smile. We took LOTS of photos that day, but this was what made it to the cover of our card!



Quote of the day: The whole secret of a successful life is to find out what is one’s destiny to do, and then do it. ~ Henry Ford


Peter and I are headed to Boston today for Christmas. The last time we celebrated Christmas in Boston was in 2006. The world looked differently for us back then! Since Mattie died I have been either at my parent's house in Los Angeles or my friend Ann's house in Virginia. Christmas is a rather unsettling time for us and for the most part I just work on getting through the days and in all reality I am not sure what is worse..... the actual holidays or dealing with the days after the holidays. They present themselves with different challenges. 

Friday, December 18, 2015

Friday, December 18, 2015

Tonight's picture was taken in December of 2007. It is ironic, I am the one who always insists on photographs and yet I don't have any Christmas photographs in which all three of us are in the photo together. This is the ONLY one, which maybe why it is so special to me. When taking photos it never dawned on me that we wouldn't have more Christmases together. 



Quote of the day: The worst part of holding the memories is not the pain. It's the loneliness of it. Memories need to be shared. ~  Lois Lowry

The fun just never ends! Today while driving my car, I heard a sound and the car felt funny. Since I was on the highway I assumed something was wrong with my tire. I was able to get out of the car and check all the tires and they seemed fine. So I got back into the car, and since I wasn't far from home, I was able to limp along and bring the car home. When I parked the car, a man came over to me and said.... you are aware that something is wrong with your car, right? I did but I did not know what. So I got out of the car and he showed me the problem, the plastic plate, called the skid plate, literally dropped down from the car and was dragging on the road (I downloaded a photo of a car from the internet to illustrate what I am talking about). 

By this point, I had already called Peter who met me to assess the situation. Meanwhile I also called my car dealership because in my opinion I feel like they did not put this part back correctly after giving my car an overhaul last week! This is truly not what I needed today, as I am dealing with trying to feel better. I am not sure what is worse, dealing with pain or dealing with the medication to conquer the pain.  

In my email today I received this photo! It is from another childhood cancer organization called Just TRYAN It. This Foundation is named after Ryan, a childhood leukemia cancer survivor. Carrie, the previous executive director of Just TRYAN It, sent me this photo and the boy in the center of the photo is her son Will. Every Just TRYAN It race that the organization sponsors, Will participates and dedicates his race to Mattie. If you look closely, the racing bib Will is wearing has Mattie's name on it. The photo is priceless because of the fact that Will (who is Mattie's age) never met Mattie, yet his life story intrigues him and he wants to remember him. Carrie not only shared the photo with me, but she wanted me to know that this photo is going on the Just TRYAN It website! It is lovely that Mattie is memorialized in this way and that his story touched the life of a child who did not even know him. 

Thursday, December 17, 2015

Thursday, December 17, 2015

Tonight's picture was taken in December of 2007. In fact I was looking for just such a photo to post last night, when we went to see Christmas lights in a garden. But instead I found it today! This photo was taken of Mattie at Brookside Gardens, during their Garden of Lights event. We really enjoyed seeing the lights together that year and I couldn't believe I did not snap of a photo of Mattie with the lights. I solved my own curiosity today by finding this photo!



Quote of the day: The smells of Christmas are the smells of childhood. 
~  Richard Paul Evans

For the past month, ever since I had surgery, I have been having pain by my ribs. I thought it would go away or that it was muscular. However, the pain wasn't subsiding. In addition to that pain, I haven't been able to sleep well. So I knew it was time to visit my doctor. Naturally I called my surgeon's office, but her nurse doesn't return calls until the end of the day. I did not want to wait for her, so I went to see my internist instead. I have been in and out of her office since October! I would prefer less visits. 

Thankfully I did go because I have a condition called Costochondritis, also known as chest wall pain. It is a temporary inflammation of the costal cartilage, the structure that connects each rib to the sternum at the costosternal joint. The condition is a common cause of chest pain. Costochondritis symptoms can be similar to the chest pain associated with a heart attack, and I would have to say it is quite painful. Pain that you can't really avoid or ignore. In any case, this condition can be caused by a trauma (such as how my body was positioned during surgery) and lifting heavy things. I have been lifting hundreds of pounds of candy ALL Fall. So it is hard to know which is the chicken and which is the egg. Or perhaps it was the combination of surgery and candy lifting. 

Either case, I am thankful for medication to manage this pain until the cartilage heals, which can take weeks or longer. I have had it for close to a month now, so I am looking for relief at some point soon! 

Wednesday, December 16, 2015

Wednesday, December 16, 2015

Tonight's picture was taken in December of 2007. To me this photo was classic Mattie. Naturally it was around the holiday season and Mattie had his Santa hat on. But he did not stop there, he had his Red Sox hat under the Santa hat and also pulled out his duck whistle that he got earlier in the year when he went on a duck boat ride for Father's Day. Check out the shoes too! On his right foot he was wearing his OWN shoe, but on his left foot, he put on one of Peter's shoes. It was the eclectic  photo!






Quote of the day: At least three times every day take a moment and ask yourself: What is really important? Have the wisdom and the courage to build your life around your answer. ~ Lee Jampolsky


Tonight Peter and I went to Meadowlark Botanical Gardens in Vienna, VA. I thought it would be nice to see Christmas lights and that would help us transition into the holidays. The last time we went to a similar light display (at Brookside Gardens in Silver Spring, MD) we had Mattie in tow. 

Of course I never imagined that when we went tonight (during the week), that we would be inundated with tiny children and families. In fact, we were so overwhelmed by this that we practically did not see the light display. All I know is though there were about one million lights in front of us, something seemed like it was missing.... and of course that was Mattie. So I am not sure I would go back to this event again.

After leaving the gardens we went out to dinner. Thinking we would have some quiet and peace at Clyde's of Tysons. Of course it did not dawn on me that it is Christmas party season. The restaurant had six BIG parties taking place tonight. In spite of the chaos and liveliness inside, Becca (the executive chef, and the phenomenal person who donates and cooks the food at our Foundation Walk) came out to visit with us and we chatted for a while. Becca was the highlight of our day, and it was good to see a friendly face after how we were feeling. 

Here are some photos of the lights we saw on display. As you can see this is NO ordinary light show. The beauty of it is you park your car and walk through this garden winter wonderland.

The lights are very thematic. There was a butterfly garden, a garden filled with flowers, a stream with fish jumping out of it, and the list goes on. 

Here is the stream with the jumping fish!

Naturally the butterfly garden caught our attention and Peter snapped this photo of me since butterflies remind me of Mattie. 

There were dragonfly lights twinkling in the trees and that too was magical and something Mattie would have loved. 

At the end of the walk, there is a fire pit where families were given long sticks and marshmallows to roast. This would have definitely been a Mattie stop, because unlike me, he loved marshmallows!



Here is a video of the garden lights from 2012 that I found on-line, however, this year's display looks VERY SIMILAR:

https://www.youtube.com/watch?v=XDM_dPeTvHY

Tuesday, December 15, 2015

Tuesday, December 15, 2015 -- Mattie died 326 weeks ago today. 

Tonight's picture was taken in December of 2007. That evening we took Mattie to Peter's office holiday party. Mattie had his reindeer headband and sweater on and truly managed to get around the room that night. The office played a secret Santa gift game, and leave it to Mattie, because he came home with the exact item he targeted.... a plastic gingerbread house that lit up!!! At the party was Stephen (the husband of Peter's colleague). As you can see Stephen looked just like Santa, so Mattie posed for a photo! This is still one of my favorite holiday photos of Mattie.



Quote of the day: There is no such thing in anyone’s life as an unimportant day. ~ Alexander Woollcott


The highlight of my day today was I received an email from my friend in cancer in California, Lee. Lee's daughter (Melinda) was diagnosed in 2007 with Hodgkin's Lymphoma. I had the opportunity to meet Lee and Melinda in March of this year, when Melinda spoke at the Institute of Medicine's workshop. I was beyond impressed with Melinda, not only for how she reflected on her own cancer battle, but the way she was able to do this. She was candid and yet inspiring and upbeat at the same time, which is a hard balance to strike. Melinda was able to allow all of us in the audience a glimpse at what it is like from a psychological perspective to be a childhood cancer survivor. Sometimes when you hear survivors speak, they only focus on the positive and negate to really show us the long term impact of such a diagnosis on one's mind, body, and spirit. 

Melinda wrote a book called, Grace, a child's intimate journey through cancer and recovery, and it was published by Happy Quail, a company that she and Lee started. Lee is now working on publishing another book, but this time it will give voice to several moms and grandparents touched by childhood cancer. An opportunity for us to tell our story, the impact childhood cancer has on us, and what it has inspired us to do with our experiences. This is Lee's brainchild and the book is called The Momcologist. 

In any case, Lee asked for chapters to be submitted to her in the Fall for the book. To make a long story short, I have had the unexpected Fall of not feeling well and needing surgery. That really set me back, in addition to the 7,500 pounds of candy that needed to be distributed. The beauty of Lee is she knew exactly what I was dealing with as she text messaged me when I wasn't feeling well and during my ordeal of testing and then surgery. But today's message is what caught my attention.... Lee basically doesn't want to put pressure on me and knows I will get to the chapter and feels that my contributions are needed and important. It was the way she said and how we interact that makes me feel the special connection that we share across the Country. The power of words is important, because they can cheer up an entire day. 

Monday, December 14, 2015

Monday, December 14, 2015

Tonight's picture was taken in December of 2007. That evening we took Mattie to Brookside Gardens in Maryland to see a Christmas light display. Brookside Gardens does a magical job, because you park your car and then walk through all the gardens that are decked out in lights, animated lights, and you name it. I had never seen anything like it before and I still remember how special that night was even today, 8 years later!!! After walking through the gardens, we came inside for cookies and hot chocolate (well Mattie did not drink the hot chocolate naturally since he HATED anything chocolate), and Mattie posed with the Garden's wonderful bronze frog statue! 

Quote of the day: If you want to test your memory, try to recall what you were worrying about one year ago today. ~ E. Joseph Cossman


Whenever I see this quote I literally laugh! I laugh because I don't have to struggle too hard to imagine what I was thinking about a year ago today! Mattie is always on my mind, trying to survive his loss is always there, and I would have to say worrying about getting very ill is pervasive. Most people my age do not worry about some of the things that weigh heavily on my mind. 

Today I went to Georgetown University Hospital to support my friend who was having surgery and her family. There is something about returning to Georgetown and having to go through a procedure that puts me on heightened alert. Though I wasn't the one undergoing the surgery, guess who was checking in with me by text message? If my faithful readers guessed Linda (Mattie's child life specialist), you guessed correctly. Linda was brought into my life through Mattie, but now she is a crucial part of our lives. Going through anything that I perceive as a medical crisis, must involve Linda. She became that important to all three of us (Mattie, Peter, and me). 

While I was outside the surgery center today, who did I bump into? But Mattie's first anesthesiologist at the hospital. The doctor who oversaw his broviac catheter placement. Peter and I happened to LOVE this doctor and when she saw me, she recognized me. She did not know that Mattie died however, so we talked about that, she told me she was leaving the hospital to go to Children's Hospital of Philadelphia, and then she hugged me several times. A real love. 

Naturally I can't seem to get through a procedure, even while supporting my friend, without getting aggravated at a medical resident! From my experience in the hospital with Mattie, I learned that you want to move right to an attending physician. In fact, on November 18th when I was getting surgery, I requested no residents come into my room (while conscious) and Linda made sure to that. They have a way of setting me off. As an educator I greatly believe in the importance of training and learning, however, it is the attitude and demeanor of a majority of residents that doesn't sit well with me. 

So a surgical resident came in to see my friend today and handed her scripts for medications she could take post surgery (so her husband could fill them while she was in surgery). Here is the kicker..... the resident thought my friend was having a completely different surgery and started talking to her about this other surgery and the fact that she was staying overnight. Naturally we confronted him because he was all wrong and instead of correcting his error he kept back peddling, saying this is what it said in the system and so forth. In all reality, he needed to do his homework before entering a patient's room. I get that he may be tired and on overload, but that isn't acceptable, nor was his attitude appreciated.

Fortunately Linda sent a patient advocate to see us and I told her about our encounter with this resident. Of which she promised me she would follow up with him and the head of the department! All I know is I don't approach a hospital like a normal person, I approach it probably as someone who has been living in the system and I know staying quiet and not being sharp are recipes for disaster in a hospital setting. Unfortunately in our healthcare system the person who makes the most noise, gets the most attention. 

The photographic highlight of our day, came from our Facebook friend, Tim Beck. He created two patchwork quilts in which Mattie was incorporated. 

Mattie is in the fifth row, fourth from the left!

This patchwork is a tribute to dads! I was so happy Tim included Peter.

Mattie and Peter are dead center.... third row, and third from the left!

Sunday, December 13, 2015

Sunday, December 13, 2015

Tonight's picture was taken in December of 2007. We took Mattie to the US Botanical Gardens to check out all the holiday decorations and toy trains, which was one of the things Mattie loved to do in December. I loved visiting the Gardens because it was like walking into a hot house when it was so cold outside. This fountain is in one of the first rooms you experience when you enter the Gardens, and it is surrounded by poinsettias and models of many of our DC landmarks made out of plants. It was always a special and memorable visit because there were so many things to see in a magical setting.



Quote of the day: The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. ~ Martin Luther King Jr.

The picture in this artistic composition was taken of Mattie during Christmas of 2007. I can still remember snapping this photo. 

My Facebook friend, Tim Beck, sent me this Christmas surprise today. Tim creates works of art for a countless number of families who lost a child to cancer all across the United States. In fact, his art work unites a few of us on line, because as we respond to what Tim is posting, some of us get to chatting with each other. 

When I thanked Tim for this gift today, his response intrigued me. He wanted to know why more people do not help those of us who lost a child to cancer, by posting memories, reflections and photos of our children on their own Facebook pages. He felt that with social media and technology it is easy to share thoughts and feelings and therefore the lack of time can not be an excuse! But Tim is perplexed as to why bereaved parents are the ones who always have to initiate the posting of photos? I told Tim I do not have simple answers to his question. 

But what I do know about Facebook is what gets LIKES and views are HAPPY photos and news. Rarely will serious and more grave information even get noticed! You could say I am being judgmental, but the reality is I have watched and tracked this on Facebook for over a year. However, I gave Tim two explanations to his question. The first is plain and simple and that is childhood cancer is scary and it is every parent's worst nightmare. Therefore, for the most part, if one can, one tries to avoid it, unless of course it has become an un-welcomed guest on your family's doorstep. Therefore if this is a topic that makes you uncomfortable, you most certainly aren't going to write and post about it on Facebook. The second explanation is more personal. Over the years, many people have told me that they do not know how to talk to me about Mattie, or they even worry that by talking about Mattie that this will make me upset and sad. Of course the reality is there is nothing you can say to me that I haven't already heard or thought about, and frankly the only thing that will make me sad is if people forget about Mattie. It is forgetting, NOT remembering that is deeply upsetting to parents who lost a child to cancer. But to specifically answer Tim's question, I think people who know us do not post photos and memories of Mattie on their Facebook pages because for the most part they do not know how Peter and I will react to it, or how other people will react to it for that matter. 

Yet as time marches on, what is very clear to me is that family and friends are needed to keep Mattie's memory alive. Others have had their own experiences with Mattie and Peter and I enjoy hearing about them. But time doesn't heal all wounds at all. That is just a platitude told to us, to try to squelch our pain and to stop conversation. The only thing time does is it impacts our memory, and our ability to remember the subtleties of Mattie, which made him the special little boy that he was. Which is why when Tim posts photo creations of Mattie on Facebook and shares them with other people, to me this helps to keep Mattie's memory alive. These photo creations also get us to reflect on the activities depicted, Mattie's character and personality, as well as our role as parents in that moment in time.