Friday, December 31, 2010

Friday, December 31, 2010

Tonight's picture was taken in December of 2002, Mattie was 8 months old. I remember Peter taking this picture, and you may think that Mattie and I just paused in front of the tree and smiled for the camera. But it wasn't that simple. Basically to get Mattie to smile, I had to run around our living room with him in my arms bouncing him around. He found the whole motion of running and bouncing hysterical. So by the time I stopped in front of the tree, he was already laughing, and Peter snapped the picture you see here! With Mattie there was ALWAYS a story behind the picture.

Quote of the day: You may forget with whom you laughed, but you will never forget with whom you wept. ~ Carie O'Leary

I woke up at 3am to a chirping sound. The battery in one of the smoke detectors was running low, but I was in such a deep sleep that when I awoke, I was disoriented. I couldn't place the sound at first but then I figured it out. My intention was to solve the problem without awaking my parents. But what unfolded for the next 30 minutes could have been straight out of an episode of I Love Lucy. The only problem was I was Lucy and Ethel wrapped up in one. Since I did not know where my parents kept a ladder, I had to get creative in climbing my way up to reach the ceiling. I first tried a chair. Forget it. I still wasn't tall enough. Then I started piling pillows on top of the chair, and climbed up on the pillows, performing a balancing act while reaching the ceiling. Despite even my best attempt, I couldn't reach the ceiling. Then I thought I should just let the thing chirp all night and go back to bed. However, that thought only lasted about a minute in my head, until I decided on plan B. Plan B involved climbing on a chair, and then climbing onto a piece of furniture that I carried over to where the smoke detector was. It may not seem too funny to you as you are reading this, but I assure you between the strategy I used to reach the smoke detector and the fact that I was talking to myself out loud in the middle of the night, I was most definitely a sight. I am happy to report that I successful dismantled this detector and eventually got back to sleep.

This morning Peter told me that a purple balloon found its way onto our deck. Not only onto the deck, but right next to Speedy Red (Mattie's ride-on car). Peter was captivated by this balloon, because where we live we RARELY see balloons. Mattie loved balloons, and to some extent we both couldn't help but think that Mattie was sending us a sign. Amazing the signs and messages you read into when you have lost someone so important to you. I told Peter that I actually saw this same balloon two weeks ago, before I left for LA. It caught my attention, just like it caught Peter's. However, when I saw it, it was outside our deck. It was actually in the plantings area, where Peter and Mattie used to set up their Christmas light display year after year. When I saw this purple balloon, I immediately thought of Mattie. So this balloon has traveled to two key Mattie locations, and how this balloon found its way onto our deck and not a neighbor's deck is curious. Peter and I would both prefer Mattie's preference and I find it a sad commentary that we desperately cling to this balloon as a physical symbol of him.

I had the opportunity to go out to lunch today with my dad's colleague and friend, John. I have known John since I was in high school. Over lunch we were all talking about some of the health issues we experienced, some of the medical issues that are currently be addressed, as well as the memories of watching a parent die. As lunch was coming to a close, John said to me that I must have found this lunch conversation very depressing, since this is NOT what "young" people talk about. With that I corrected him. I told him that I maybe much younger than those sitting at the table, but what I don't have in years, I have more than made up for through Mattie's cancer. I explained that I have most likely seen more of hospitals, pain, and debilitating illness than all of them combined. With that John seemed happy that I brought up the topic. He said that he was afraid to talk about Mattie and my loss, but since I spoke about it, he was going to. He told me that he was an avid blog reader when Mattie was alive, and that he honestly does not know how we survived that battle. In addition, he wanted me to know that Mattie couldn't of had better parents, advocates, and caregivers. As he continued talking, we all landed up in tears at the table. What caught my attention was despite the fact that I was on the East Coast and John was on the West Coast, he emotionally absorbed what Peter and I faced and continue to face over Mattie. So just when I think others can't possibly understand, I have a reality check that assures me others are out there, listening, and feeling for our loss.

This evening, I received an e-mail from Karen (Keaton's mom). Karen sent me a posting from a mom whose child has cancer. This mom SO eloquently explained why saying good-bye to 2010 is so complex for those of us who lost a child. As promised I was going to write about this myself tonight, but thanks to Karen, I can instead post the feelings of another mom. The beauty of you reading this is you can see that SO many of us feel this way. It is not just Vicki and Peter. Instead, it is the reality of all of us touched by pediatric cancer. Yes we say good-bye to 2010, but in essence we must face being further separated from the time Mattie was on this earth. We instead are forced into another year without him. As the years pass, the feelings do not get better, they remain unchanged. Or perhaps the feelings become more pronounced and intense. We know that two classrooms of children are diagnosed A DAY with cancer, and that close to 200 cases of Osteosarcoma are diagnosed in a year (*Note: Mattie had multifocal osteosarcoma, a form of osteosarcoma that is MORE rare and much harder to treat). So we can safely say that no new children will be diagnosed with cancer in 2010, but with 2011, the counter starts back at zero, and the idea that other families and children will have to face what we did in 2008, becomes overwhelming, humbling, and it does make me feel a sense of powerlessness in this world. I have posted below this other mom's comments, which I think are worth reading.

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The last day of 2010

2010. You've been a hard, hard year.

There are people in the world suffering under political regimes I cannot grasp, homeless, destitute, in slavery, in the depths of the human condition, starving for things I take for granted like food, shelter, warmth, love, kindness. I acknowledge that, I know I have a life of advantage and have and will receive a bounty of blessings.

I can recognize that and still call you hard 2010, because this year, this year I was witness to suffering that should not happen, suffering that has set up camp in my heart and refuses to leave, suffering that is not my own.

For too many families 2010 is a year that will be seared not only into their memories, but into their souls. It is the year their child died from cancer. I know two of these moms, personally. They aren't some caring page I follow from afar, they are women I know. Women I've hugged. Women whose children's voices I can still remember, whose smiles linger in my memory and refuse to diminish. I can see them like it was yesterday, because in 2010 I did.

In 2010 I stood in quiet attendance as their coffins were buried. It's been 4 months since August, since their battles ended and they found relief from their tremendous physical suffering. Tomorrow will mark month five for one of those families. That date is what brings me here.

I sat thinking before Christmas, that in so many ways I am ready to leave 2010 and it's hardships behind, to move on to a fresh new year. I am sure many of you have the same feelings, or at the least are excited to start a new year and see what surprises it holds. Are those two women? Because I can't shake this one simple thought in my brain.

January 1, 2011 will be the first day of a calendar year they live without their child.

As awful and horrendous as 2010 has been to them, this day December 31, 2010, they can still say, "this year, 2010, I held my child. I hugged and kissed my child and told my child they were loved beyond measure. This year 2010, my family was whole. In 2010 my child was here." A simple tick of the clock, a ball dropping in a busy city, it takes that away from them. From here on out they live in years without their child. Years where their child is memory. Their child will have been here last year.

I think of them both and wonder if their hearts want to linger here in 2010. If December 31st could last a few weeks or months until they are ready to face what happens at midnight. It's not just another day, it's a new beginning and one that is mixed with longing to linger here and hope for healing there.

A part of me wants to stay in 2010, because on December 31, 2010 all 400 of the kids who will be diagnosed with my son's cancer have heard their diagnosis. In those brief waning hours of new years eve, no more children will be diagnosed with his cancer this year. I want to stay here in this moment, where membership is temporarily closed to new members. With 2011 the counter resets and 400 more families will join the ranks of the Wilms Warriors.

In 2011, over 13,000 more children will be diagnosed with cancer in the United States. In 2011, almost every day of it, 47 children under the age of 15 will be diagnosed with cancer. Some of those days it will be less than 47, but too many days it will be more. 1,400 of those newly diagnosed children will die within this year. Countless little warriors who have already been fighting the arduous fight for years already will die this year. All of those families will find themselves in this place with my friends come December 31, 2011. Facing the dawn of a new year in which their child will not live.

All of this will pass and my wanting to stay here in 2010 won't stop that from happening.

Tomorrow will be about hope, it has to be, it will be.

But for today, in these final hours of 2010 I want to hold on to the year 2010, because in 2010, Skye and Sam lived.

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This evening, my parents and I had a New Year's Eve dinner together. It was a peaceful and tasty evening, and we naturally toasted to Mattie. To all my readers, we wish you only the best in 2011. I would like to end tonight's posting with a message from Mattie's social worker, Denise. Denise has been a steadfast supporter of us through Mattie's death, I value her messages that she periodically sends me.  Denise wrote, "Just want to take a moment to wish you many blessings in the New Year. I know the past several years have been difficult ones and I don't know that it ever gets any easier. I just trust that there will be moments along the way where you can find some peace, some joy, some hope. I have great admiration and affection for you, because in the midst of your own heartache and pain, I see you constantly giving of yourselves to others. In the midst of your giving remember to stop and take care of you. Just want you to know that you continue to be in my heart and my prayers."

Thursday, December 30, 2010

Thursday, December 30, 2010

Tonight's picture was taken in December of 2002, Mattie's first Christmas. He was 8 months old. That year, our first snow was in the beginning of December. I wanted to capture that moment, and literally I dressed Mattie up in his Santa suit, dragged his entertainment saucer onto our deck, and wrapped a blanket around it to make it look more like a sleigh. I was jumping around in the background trying to get Mattie's attention while Peter was snapping the pictures. This was by far my favorite Christmas card photo of Mattie. It is hard to believe that such a cute and happy fellow could develop cancer and die. This picture captures his lovely smile, his energy, and his adorable cheeks.

Quote of the day: Some die without having really lived, while others continue to live, in spite of the fact that they have died. ~ Unknown

What a fabulous quote! It captures both the loss of Mattie and the grief that Peter and I are living with daily. Mattie is portrayed in the first half of this quote.... "some die without having really lived," while the second half of the quote applies to Peter and I..... "we continue to live, in spite of the fact that we have died." Died is clearly in the figurative sense and NOT the literal one. I do not have a vast support group of  moms to turn to who have lost a child through cancer. But I know a few! I am thankful and saddened by this at the same time. My hunch is these moms would admit to the fact that a part or all of themselves died when their child died. Even those moms who have other children still alive to care for. Having other children does not replace the connection and love one has for the child who died. I think that is an easy misperception one can have, but on a couple of occasions I have been told from one mom in particular, who I met at Georgetown, that the pain from the loss of her child is too great to even raise her other children. As I observed this mom with her remaining children at the Hospital, I couldn't help but feel sick inside. Sick because I could visibly see how pediatric cancer ripped this family apart, and yet, I had and have no commentary or judgment, ONLY deep understanding.

Last night as I was heading to bed, a horrible wind storm commenced. However, it never stopped! The wind was gusting, shaking windows, and rattling just about everything. At 4am, the wind most definitely caught my attention, and I got out of bed. All I could think of is I related to Dorothy in the Wizard of Oz. Fortunately the house wasn't transported anywhere, and when I woke up I wasn't in Oz, and there was no sign of the yellow brick road. It was nonetheless, a very blustery and cold day in Los Angeles. My parents took me to Calabasas today. Calabasas is in Los Angeles County and it is located in the southwestern San Fernando Valley and the Santa Monica Mountains between Topanga and Malibu Canyon. It is generally accepted that Calabasas means "pumpkin," "squash," or "gourd," derived from  the Spanish calabaza. I had visited Calabasas many times while growing up in California. My parent's close friends lived there and we would see them often when I was in high school. However, like Santa Barbara, Calabasas has also changed greatly from what I remember.

While walking around Calabasas, I spotted a woman who had to be in her 80s. She was being braced between two people as she was walking. Each one was supporting her under her arm. The woman caught my attention because she had beautiful white hair and was wearing a very bright banana colored sweater. As I was walking toward her, I was chatting to my mom, but must have smiled at this older woman at the same time. The next thing I knew, the woman had stopped her companions who were helping her, and she waited for me to get closer to her. She stopped because she wanted me to know that she thought I had the most beautiful smile. My response to her was she had a beautiful smile too, which is why I was smiling at her in the first place. Though we went about our business for the rest of the day, this woman's comments and kindness stayed with me.

I told Peter about this interaction today and he found the whole thing quite eerie. As if this was some sort of sign or omen to me. My response to Peter was that I am not sure I agree with that, but I do know that when I smile at people, 90% of the time, they smile in return. I know there have been several psychological studies done about smiling. I included a brief overview of one below. But if you doubt what I am saying, try it yourself. Smile at a complete stranger, and you most likely will get a pleasant surprise. I recall at an early age that my grandmother would say, "you can catch more flies with honey than vinegar." This simple adage happens to be true, and it has helped me in many circumstances in my life.

It is hard to believe in many ways that tomorrow is New Year's eve, and we will be moving into 2011. I have many issues with crossing over into a New Year, and I will elaborate on this on Friday. However, what I do know is that I am NOT the only parent who has lost a child who feels this way. On behalf of Peter and I, we wish our readers a safe and memorable New Year's eve, and the best of health and happiness in 2011. For all of you, who continue to read and stay connected, we are grateful!

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What if a simple smile could change a person’s behavior?

Previous research has shown that a person receives more help when smiling. Do we just respond naturally in a more friendly manner to someone who’s smiling? Or is it a matter of reciprocal altruism — you gave me something — a smile — therefore I’ll give you something in return. Or what if a smile simply enhances our mood — a positive mood — which in turn, enhances our inclination to help. A few years ago, two French researchers (Gueguen & De Gail, 2003) decided to find out.

As the researchers note, 800 passersby (400 men and 400 women), aged approximately between 20 and 50, served as participants in this experiment. They were randomly selected from passersby who were walking in a supermarket of a medium-size city (more than 100,000 inhabitants) in the west of France, in a good area of town.

Four men and four women, aged 19-21 years old, served as confederates in this experiment — they acted on behalf of the researchers. In half of the cases, the confederate smiled at the passerby.

A few seconds after this interaction, the passersby had the opportunity to help another research confederate who dropped his/her computer diskettes on the ground. The researchers tallied how many passersby stopped to help the second confederate, and whether they had been in the group that had seen the original confederate smile or not.

In the smiling condition, nearly 30 percent of the people stopped to help the person with their diskettes. In the non-smiling condition, only 20 percent of the people stopped, a significant 50% difference between the two conditions.

The results demonstrated that the previous smile of a stranger enhances later helping behavior. The researchers also found that female participants helped male confederates more readily than the female confederates, whereas male participants helped female confederates more often than male confederates. The researchers suggest this was a factor of “traditional roles of self-presentation in opposite-sex behavior” — in other words, typical romantic mating behavior was like the reason.

This and previous studies seem to show that the effect of a positive mood on helping behavior is robust and is very easily obtained. It thus appears possible that the effect of smiling on helping is mediated by a positive mood.

Wednesday, December 29, 2010

Wednesday, December 29, 2010

Tonight's picture was taken in December of 2004. Mattie was only two years old, and to me he had a very angelic face. This picture was featured on our Christmas cards that year. In the early years, taking a picture of Mattie was a royal challenge. He did not like sitting still for half a second, and the thought of smiling for a camera was pointless to him. Nonetheless, thanks to digital cameras and taking LOTS of pictures, I was able to capture that beautiful face.

Quote of the day: Your heart has brought great joy to many. Those hearts can never forget you. ~ Flavia Weeden

I am happy to report that Peter made it home safely. He tells me his flight was quite bumpy and rough, and not for just a couple of minutes, but for the entire flight. He was thrilled that I wasn't on the flight. I am thrilled that I wasn't on it either, since I would have been a basket case by the time I landed, and I have no doubt I would have made Peter's trip absolutely miserable. Our cat, Patches, has been reunited with her buddy, and I am happy they have each other. Clearly Peter and I are both independent adults, but since we lost Mattie spending time apart has its complications. We miss each other and somehow feel the loss of Mattie even more.

Today was rainy, extremely foggy, and chilly in Los Angeles. So my parents took me to the movies. As some of my readers may know, I RARELY go to the movies. I certainly wouldn't waste the money on most of our American movies. I can't stand the violence, sex, language, and content in most of them! I would say I was somewhat like this prior to Mattie's cancer, but NOW I have absolutely no tolerance to sit still and have content flash before my eyes that is disturbing to me. However, I usually can be talked into going to see a foreign film. The film my parent's selected was King's Speech. I asked them what it was about and they did not want to tell me, I suppose they wanted me to absorb the story and plot for myself.

Many of my readers may have heard of this movie. I hadn't. Mainly because since Mattie's illness and death, I have closed off a good portion of the outside world. I am slowly letting it back in, but I am still very guarded about taking in national and world news. I just can't handle the content anymore. It is as if my circuits were frayed during Mattie's battle with cancer, and even though new pathways and circuits are being re-established, I am still on emotional overload and my mind just can't handle more.

I am ALWAYS in amazement when I see a British film. Why? Because I wonder how on earth they can create a meaningful, substantive, and touching work of art, and we here in America produce one worthless and unforgettable movie after another? It makes you pause. King's Speech is a superb movie and since it was based on a true story and the life of King George the VI, it made it even more fascinating.

What caught my utmost attention in the movie was the relationship that developed between King George the VI and his speech therapist, Lionel Logue. King George stammered when he spoke, or in other words he was a stutterer. A MAJOR problem for a public figure, and a public figure leading his Country through WWII. He tried traditional methods to address the issue, but nothing worked. Nothing until his wife introduced him to Lionel Logue. Lionel turns out to be a brilliant therapist, yet we learn he has absolutely NO credentials. Just years of work experience, he is a good listener, understands human dynamics, and unlike other professionals takes the TIME to connect with his clients. It is the FRIENDSHIP between these two men, NOT their professional relationship, that allows King George the strength and fortitude to learn to speak without stuttering.

The movie gives its viewers a bird's eye view of what life must be like for the English royalty, and the complexities of such a title. It is through the beauty of this friendship and their open dialogue, we learn that there was a psychological explanation for the stuttering, not a physical one. As King George learned to speak in front of his trusted friend ("therapist"), he gained the confidence in his verbal ability, and I have no doubt this enabled the King to be the great leader that he was destined to be.

When the movie ended, the audience was clapping. When does that happen when viewing an American movie?! I can't recall! I attached a review of the movie from the Hollywood Reporter below as well as a trailer to the movie, if you haven't seen it yet. All I know is that for two hours and 13 minutes, I was able to forget my own issues, and be absorbed into a wonderful, captivating, and sensitive story. This rarely happens for me which is why this is SO noteworthy today!

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A Review from the Hollywood Reporter:

Lately, British filmmakers have zeroed in on personal moments and back stories that go a long way in not only humanizing their royal family but also creating a much greater awareness of the trials and difficulties faced by those in such "exalted" positions.


It perhaps started with The Queen, continued with Young Victoria and now achieves the most intimate glimpse inside the royal camp to date with The King's Speech.

Each of these films features a mesmerizing central performance. Although Speech requires shared billing, with no disrespect to Geoffrey Rush's spot-on work here, Colin Firth, following up on his Oscar-nominated role in A Single Man, now can claim a place among Britain's finest film actors with his performance as the man who became King George VI.

The film is a sure winner in the British Isles and many former colonies. How its most rebellious and historically challenged colony will react when the Weinstein Co. releases the film domestically Nov. 24 is hard to gauge. Perhaps only decent box office can be anticipated.

The thing about Bertie, as George V's second son was called by the family, is that he never is going to be king. A good thing too because he suffers from a terrible stammer and what nowadays would be called low self-esteem. Then history conspires against him.

But this is getting ahead of the story, ably written by David Seidler and directed by Tom Hooper. While dad (Michael Gambon) remains on his throne and his elder brother, David (Guy Pearce), gadding about as an international playboy, Bertie (Firth) has to give a speech. He looks like he is about to attend his own execution, and words stick in his throat so badly that what comes out is unintelligible.

His wife, Elizabeth (Helena Bonham Carter), seeks out speech therapists but only disaster results. Then she stumbles onto Lionel Logue (Rush).

The movie establishes him as an eccentric, lower-class and somewhat ignoble version of Henry Higgins. He and his family live in a large, oddly wallpapered flat that contains only a fraction of the furniture necessary to fill it. What's worse, he's Australian and a failed ham actor specializing in eloquent though thoroughly bad Shakespeare. Yet even when he realizes a royal is summoning him, he insists that it's "his castle, his rules": The royal must take his lessons in Lionel's home.

Thus the movie sets up an Odd Couple dynamic that, like the famous Neil Simon play/movie/TV series, measures out comedy and drama in nearly even doses. Bertie and Lionel -- the therapist insists on a first-name basis -- discover common ground, quarrel bitterly, share a drink, make a breakthrough, then break off all contact. At the root of Bertie's problem, it gradually emerges, is a wretched childhood, no matter how rich and glorious it might seem to outsiders.

Now comes history's little trick. Brother David eventually becomes Edward VIII; you know, the irresponsible sap who decides he'd rather marry a well-traveled, twice-divorced American, Wallis Simpson, than be king of England. Following his brother's abdication, Bertie becomes George VI, which means a lot of speech giving -- especially on the eve of World War II.

The movie lets everything build to George VI's first wartime speech. In the early days of the wireless -- long before television, of course -- this means a king can stand alone in a room with only a microphone and speech coach to get him through those three minutes (egged on by Beethoven's mighty Seventh Symphony). It's an understandably moving moment, but the film has nicely paved the way with long therapy sessions, conversations and comic fights between its couple.
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As the movie trailer says..... Some men are born great, others have greatness thrust upon them!

Movie Trailer to King's Speech: http://kings-speech.movie-trailer.com/

Tuesday, December 28, 2010

Tuesday, December 28, 2010 -- Mattie died 68 weeks ago today.

Tonight's picture was taken in December of 2007. It was a frigid night out, but we decided to walk to the White House and see the wonderful National Christmas tree and all the other holiday displays outside on the National Mall. Peter and I had lived in Washington, DC for many years, but this was our first year actually visiting the tree. Mattie loved the tree, the amazing electrical trains displayed around the tree, and the little trees that surrounded this huge tree, representing all of our 50 states.

Quote of the day: There is only one way for you to live without grief in your lifetime; that is to exist without love. Your grief represents your humanness, just as your loves does. ~ Carol Standacher




Well based on tonight's quote, I would then have to say that I AM VERY HUMAN! In fact, every aspect of having Mattie has been an enlightening, humbling, and amazing journey for Peter and I. I have no doubt that every child in this world is special in some way, but Mattie's uniqueness was evident from the very beginning. He pushed us as parents in ways that were unimaginable, and just when we thought we mastered the art of parenting, forget it! We had to go back to square one and learn a whole bunch of new skills and techniques to raise Mattie effectively. Mattie's cancer was the ultimate battle and the ultimate lesson in life. We learned more about life and death in the 15 months that Mattie underwent treatment than we did at any other point in our lives. It is hard to believe that Mattie died 68 weeks ago today. In so many ways, I just can't accept that, and I am not sure I ever will.

My mom and I went for a walk this morning and completed our three mile routine and chatted along the way. We talk about many things, and always reflect upon Mattie as well. Though I did get fresh air, was out in the glorious sunshine, my headache was so extreme. I am not sure how I kept my eyes open or functioned.

Peter is definitely on the mend. But I have him on antibiotics and a host of other things. It is my hope that he makes it home okay tonight and that his symptoms do not become worse! This has clearly NOT been the break I was hoping for Peter. A break he very much needed.

This afternoon my mom and I went out shopping. We did not buy a thing, but we had a good time exploring. I learned the art of shopping for clothes from my mom at an early age. It wasn't like she was directly teaching me, but as a youngster in tow, I observed a lot. In many ways my feelings for color and what will go together are a direct result of modeling her behaviors. This only confirms to me the importance of parents in a child's life. So much is absorbed and learned indirectly and as we mature, we realize the similarities we have with our parents.

As my mom and I were driving back home today, I snapped a picture of the mountains in her neighborhood. The sky was a beautiful blue today, with NOT a cloud in the sky. I hear the rain is transcending upon us again tomorrow, so we really tried to appreciate the sun today!

I am becoming an expert in spotting deer now! This fellow was around the corner from my mom's house. Notice in the lower right hand corner of this picture a whitish structure. This is the roof of a person's house. This illustrates to you just how close this deer got to the house. My mom tells me she has a deer that likes to sit on her front lawn. I have yet to see this, but I am intrigued with nature being so close to people. Living in the heart of Washington, DC, this is a RARE and special sight to me.



I would like to end tonight's posting with a message from Mattie's oncologist and our friend, Kristen. As my readers know, Kristen writes to us each Tuesday, in remembrance of Mattie. Kristen wrote, "I am thinking of you today. I have been unable to look at the blog in the last week but I imagine you are still in California. I hope the sun is shining over there on the two of you! Wishing you peace in the year ahead and thinking of you, this Tuesday and everyday!"

Monday, December 27, 2010

Monday, December 27, 2010

Tonight's picture was featured on our Christmas card in 2007. Mattie was five years old. Behind Mattie, you can see his Christmas train. Mattie loved this train, and each year, this Santa train (which blew puffs of smoke out of its smoke stack, and had a waving Santa conducting the train) was featured around our tree. Mattie introduced me to trains, because prior to him, I never played with a train in my life. However, his love for locomotives inspired me, and after a while, I too was enamored by the history, mechanics, and beauty of trains.

Quote of the day: Out of love comes suffering; out of suffering comes loves. That is the mystery. ~ Louise Cordana

In the course of the last two days I received an email from one of Mattie's favorite preschool teachers, Lana, and a link to a song sent to me by Ann. Ironically the sentiments in both messages centered around the biblical connections between my loss of Mattie, my only son, and the loss Mary experienced with her son, Jesus. I certainly am in NO way implying that my life and Mattie's are equivalent in nature to Mary and Jesus, however, I do think that losing Mattie in such a painful and devastating manner, gives me greater insights into the personal sacrifices of Mary. Mary is a central figure in my religion, Catholicism, however, I must admit that I did not have a true concept for what it meant to give birth to a child and then to see him die before one's eyes. I unfortunately get it all too well now. Mattie wasn't nailed to a cross, but seeing a six year old hooked up to chemotherapy, have his body scarred from limb salvaging surgeries, and then die gasping for air and screaming in pain seems rather equivalent to me!

Here is the message I received from Lana this morning which got me thinking. Lana wrote, "I just was reading the blog and I had actually read the comments from your friend Karen. I'm so happy you have her, someone who really understands some of what you went through and the horrible journey you still have to tread. I've told you that I also read a blog from another woman who lost her child this past May, and so often I think "that's the same thoughts Vicki shares." Well yesterday's post really touched me and again I thought of you. Here's an excerpt:

Every book and article and essay I’ve read since Henry died says that people who lose a child are forever changed. This is not a temporary grief. Parents who lose a son or daughter don’t ever “get over it.” I know that I am fundamentally different. For one thing, I don’t imagine that I will ever feel joy in quite the same way ever again – even during this most joyous of seasons. Don’t misunderstand – I treasure every moment with the people I love – particularly my children – far more than I did before losing their big brother, but the joy in my life is now a more muted, less vibrant version of what I felt before. Colors are duller. Music is less interesting. Food lacks the same flavor. As a progressive Christian, this year, I have tried to ponder the provenance of Christmas. I’ve spent some time thinking about Mary, mother of Jesus, and how she must have felt to lose her son. And I’ve also thought a lot the other mothers all over the world, all across the ages who have grieved the death of a beloved child. I am struggling to find meaning, and spiritual growth in my loss, and in Henry’s life journey. But really, to be honest, my yearning to figure out what it all means has kind of fallen flat. I have totally failed in my attempts at Christmas-related spiritual growth and inner peace because really, all I wanted for Christmas was the one thing I can never have – the same thing I will wish for every Christmas for the rest of my life. Hug your babies tight this holiday season, and every day. Don’t take one minute of it for granted. And take pictures. Lots of pictures.

I thought "well Vicki did take lots of pictures!"...and I so enjoy you sharing them each day. I've already told you that I, of course, LOVE 3-4 year old Mattie, best, when he was also "my" Mattie."

I appreciate hearing from other moms who have lost a child. As Henry's mom indicated above, when you lose a child, life is NEVER the same. In fact, I have used the same words as she..... life is more muted, less vibrant, and duller. In reading her feelings, it was like I was reading my own writing! Yesterday Ann sent me the link below to a Kenny Rogers song entitled, "Mary did you know?" As we recently celebrated Christmas, the birth of Jesus, it is hard not to make comparisons between Mary and other moms who have lost a child. So when I heard this song, it had me pause. I asked Ann why she sent it to me, because clearly I knew she wasn't reminding me of the Christian significance of the holiday. I suspected she was telling me the meaning she sees in Mattie's death. As Ann stated to me, "just like Jesus, Mattie's life and death also had purpose." I have a feeling I will be spending the rest of my life trying to find this purpose. However, I suspect, nothing that presents itself will suffice or justify this loss to me.
 
Kenny Rogers' song: http://www.andiesisle.com/didsheknow.html

 

The sun was out today, and my mom and I went for another 3.2 mile walk. My parents live in the Burbank Hills, and these beautiful creatures visit the hills each day. Today I was able to take my camera and capture these deer grazing. The deer here are quite different from the ones Peter and I see on Roosevelt Island in DC. These deer are chocolate colored and they seem quite used to sharing the space with people!

On our walk, I also observed a man flying a battery powered plane. My mom and I both couldn't help but think of Mattie. Mattie loved flying planes, it was a close second to building with Legos!

Peter is slowly recovering. Just in time to return home on Tuesday! He continued to rest today, since he doesn't have his strength back. My parents took me to this new outdoor mall today. This mall is simply incredible. It almost seems like a mini town, since it is surrounded by condos, restaurants, a bookstore, a movie theatre, and retail stores. The space has fountains, which perform timed water shows to music, a playground filled with children, and even a train taking people around the complex. If Mattie were alive, I have a feeling he would have appreciated this space, not to mention the train!

This evening, Peter was feeling up to it, so we took him out to dinner at a restaurant on top of the Burbank Hills. In this picture of my parents and I, you can see the valley all a glow in the background.

As we were driving back home, we literally had to stop the car because this house caught our attention. Every inch of this house was lit! In addition, it had a mailbox that mechanically opened itself, and when it did, it played music. The walkway of the house was lined with toy soldiers and what you can't see is on the lawn, there were other parts of the display moving. All I can say is WOW! Mattie was very much into Christmas light displays, and I honestly think this one would have sent him reeling in joy.

I would like to end tonight's posting with a message from my friend, Susan. Susan wrote, "As I was reading the blog this past week and the talk about how people chose different ways to remember Mattie, I felt an emptiness because I hadn't done a thing like that. So I pondered on it for awhile and I hit upon what I thought is a great idea. I was doing my usual load up of unused stuff for Goodwill and came upon an unopened jewelry box kit I had bought for Ari years ago...I was going to give it to Goodwill but then remembered that at TC we have collect things for Toys for Tots. That's when it hit! I used to have such a great time shopping for Mattie, what if I put that same energy into shopping for Mattie but then gave the gift(s) to Toys for Tots? I am so excited about this that I can't even wait for next year!!!! I've started making my list of things I got him that he liked. First and foremost of course is the dinosaur kit. Prayers for a speedy recovery to Peter! I think you are right, being on vacation allowed him to let down his defenses a bit and the sickness had a chance to flow in. While I knew that both of you were extraordinarily strong when nursing Mattie, I don't think most of us realized how very strong you are until he passed away. I believe all the physical afflictions you are experiencing is a testament to your strength. Mattie was first in your life, so you stuffed down everything you were feeling so you could minister to him. But now, sadly that Mattie is gone and you no longer are caring for him everything you could have felt at the time is manifesting itself in your physical afflictions. You did what you needed, wanted, and had to do which was take care of Mattie. All that "stuffing down" combined with the grief and sorrow you rightfully feel is an overwhelming combination."

Sunday, December 26, 2010

Sunday, December 26, 2010

Tonight's picture was taken on Christmas of 2008. This was a particularly challenging day! However, the bright spot in the day was a gift Mattie received from his preschool buddy, John. Mattie was in a terrible mood and very edgy on Christmas, so in low moments like that, Peter and I would scramble and turn to our pile of Team Mattie gifts. When Mattie opened up John's gift, which included light up noses, hats, and antlers, he smiled. I captured Mattie and Peter acting silly, and for that moment I was so grateful for such a diversion. Team Mattie provided us with many diversions, meals, cards, videos, and moral support. Though Mattie is no longer with us, the kindness and feeling provided to us by others will remain with me forever.

Quote of the day: I don't care what they say with their mouths -  everybody knows that something is eternal. And it ain't houses, and it ain't names, and it ain't earth, and it ain't even stars -  everybody knows in their bones that something is eternal, and that something has to do with human beings. All the greatest people ever lived have been telling us that for five thousand years and yet you'd be surprised how people are always losing hold of it. There's something way down deep that's eternal about every human being. ~ Thornton Wilder

Peter continued to feel quite sick today, so he basically spent the day in bed. I feel badly for him, because he rarely gets to take a break, and yet now that he has free time, he is sick and unable to do anything. I suspect that so many things have contributed to Peter getting ill, such as his intense work schedule, the stress he lives with daily from grief, and the whole change in his lifestyle (being on a diet and exercising). It is my hope that he feels better by tomorrow, since he returns home to Washington, DC on Tuesday. A week goes by fast, and in all reality this limited time makes it very hard to recover and heal together from Mattie's death.

My mom and I were able to start the day with our walking routine. We walked for about three miles and today took a different path. The journey brought us passed some fascinating trees. They were of interest to me because I knew I had seen them somewhere before. As I got closer to the trees, I noticed they were dropping tiny fruits that looked like grapes. However, what I quickly deduced was I was surrounded by olive trees, and the fruits all over the ground were olives. For someone, like myself, who LOVES olives, this was an amazing sight to see. Italy is well known for its olive trees and I can recall seeing these marvelous trees when I was growing up and visiting family. So in a way it was like being transported back in time.

Later in the day, my parents and I went to see a play entitled, Inspecting Carol. It was a spoof of Charles Dickens' play, A Christmas Carol. If Dickens could have seen this play, I suspect he would be doing somersaults! This play took a classic, with a moral message, and transformed it into a play with a political agenda. If that wasn't bad enough, I swear the play was directed by someone who has a case of untreated ADHD. As an audience member it was impossible to follow the dialog and understand the character development, because of the way characters flitted on and off the stage. Many times they were talking over each other, and honestly, I wanted to get on stage and moderate this disaster. I included a synopsis of the play below if you are interested in reading more about it. I later found a critique of the show we saw today and the critic basically said this show was "painful" to watch. I couldn't have agreed more! Nonetheless, it gave us an awful lot to talk about once it was over.


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Inspecting Carol is a comedic play by Daniel J. Sullivan, written in 1991 and produced by the Seattle Repertory Theatre.

This play is about a small professional theatre company in a midsized city. The company is filled with many different Characters from a married couple (Dorothy and Sidney) who think everything is not a big deal, to Phil the guy with chronic health problems, to Larry who always has new ideas to bring to the scripts, to Walter the war veteran who doesn't know his lines and is the only black character, to Luther the kid who is too big to be Tiny Tim, to MJ who is the Stage Manager trying to get the show up and running, to Zorah the flaky director and company owner, to Kevin who inherited their financial circumstances to try and fix. The play starts with MJ being on stage when Wayne comes in, Wayne is a data processor turned actor. He is a terrible actor and is asking to audition. MJ tries to get him out and he leaves for a little while. Zorah comes in and we find that rehearsals have been moving rather slowly,this is when Phil and Walter make their appearance. Zorah has a chat with Kevin to find that they not only lost half of their subscribers but that their 30,000 grant might be taken away completely. They have one more chance, an Inspector is scheduled to come watch A Christmas Carol. Here enter Wayne..and mistake identity happens. Everyone caters to Wayne thinking he is the inspector. Larry uses Wayne's power over Zorah to try and spice up the Christmas Carol script. All Hell breaks loose, its not until Act Two scene one at the end that Wayne realizes why everyone is catering to him. After he finds out he uses his power to gain a part in the show, in the midst Wayne fights Phil multiple times. During one of the fights the real Inspector "Betty" walks in. They do the version that Larry wrote of a Christmas Carol and again all hell breaks lose ending with Betty being knocked out. After Betty is out cold everyone is freaking out because that could be the end of their company. Just to find out Betty loved the show so much they have to do it again.
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My parents and I went out to dinner tonight. We went to Mattie's favorite restaurant in the valley. What he loved about this restaurant was the lion head fountain on the patio of the restaurant. Each time we took Mattie to this restaurant we ALWAYS sat outside by the fountain. One thing I learned about Mattie early on in life was he really did not like being indoors, and around a lot of people and noise. Taking Mattie out to eat wasn't easy, but if I could try to secure the right conditions, we would have a half of a chance of actually eating. Somehow the fountain at this restaurant intrigued Mattie and on some level he found listening to the sound of the water very peaceful. I suppose the apple didn't fall far from the tree. So tonight we sat at our usual table and I actually sat in the seat Mattie would take. It is ironic or impossible to believe that the chair, fountain, table, and restaurant can all continue to exist and yet Mattie is gone. It is hard to swallow at times, much less understand.

We received a lovely comment on the blog today, and unless my readers look at the comments section, they may not have read it. Which is why I am posting what Karen (Keaton's mom) wrote to me today. As many of my readers have been following along, Karen lost her son to Osteosarcoma in April of 2010. We were connected electronically prior to both of our son's dying, but now that we lost our sons, we both appreciate having each other to turn to. We have found that we share similar thoughts and feelings. To me this is quite unique and special.... to be able to be understood by a fellow mom. Since I sometimes find others can't possibly relate to the internal turmoil I live with. This also applies to other moms who have lost children. NOT every mom handles, copes, or processes the loss of a child the same way. I am NOT implying there is a right or wrong way to do this, but I am CERTAINLY saying that for me it helps to have found someone like Karen, who experiences similar struggles, thoughts, and feelings. We help normalize for each other a VERY unnatural situation! Surviving the death of a child is painful enough, but to survive it without having others that truly understand you is devastating.    

Karen wrote, "Also amazing that once again your words transcribed exactly the thoughts in my head, and put them into black and white! The article written by the other mother was also so descriptive of my own thoughts and needs. I'm considering re-posting it on Keaton's Caringbridge site, but some of my acquaintances seem to think I am targeting them whenever I try to show that there is a common bond in the way a lot of us moms feel and react after the life altering loss of our child. When you mentioned in a previous blog about your "toxic" feelings being able to harm a friendship, it so resonated with my own experiences, lately. Thank you for your support and validation of my sometimes misunderstood by those around me, feelings. Having someone I can connect with that actually does understand has helped me hang on, and try to keep in check the anger and resentment that sometimes radiates from within, as those around me, (who I know think they are being helpful), give yet another suggestion for how I should be handling my grief, or how I could be able to move on, etc. And yes, I know all the "professional" advice for grief therapy, all the relevant counseling tips, and am hopeful that some of it is actually relevant and meaningful to some who need and can use it. I really do not want anyone to have to be stuck in this same dark place where I dwell. But all I want is to move back, not to move on, even though I know my desire is absolutely futile, and of course not a constructive way of handling this life.
Yet, I continue to move, further from my Keaton with each passing hour, like Anna Nalick's song "Breathe" lyrics say....

"'Cause you can't jump the track,we're like cars on a cable
And life's like an hourglass, glued to the table
No one can find the rewind button girl,
So cradle your head in your hands"

Hoping Peter feels better, and your headaches are improving. I agree with your mom about the "sign" of Mattie's presence with you. I look constantly for those signs, myself. Enjoy your walks with your mom...those are really special."  Karen, Mother of Keaton for Always

Saturday, December 25, 2010

Saturday, December 25, 2010

Tonight's picture was taken on Christmas Eve of 2008. This was a big night for Mattie. Why? Two reasons. First Dr. Bob (Mattie's surgeon) made a house call and removed the cast on Mattie's left arm. A cast that was placed on his arm after his second limb salvaging surgery. That night, Bob gave Mattie the go ahead to start using his other arm. In fact, both of Mattie's arms functioned quite well after his surgeries, he had limited mobility in the sense that he couldn't lift his arms over his head, but he could use them effectively to play, hold things, and eat. That alone was miraculous. The second big surprise was a personal visit from Santa. Santa was played by Ann's cousin, Ed, and I recall that night vividly.

Quote of the day: Believing where we can not prove. ~ Alfred Lord Tennyson


It is hard to believe that today was Christmas. It did not feel like a holiday, or perhaps I just did not want to acknowledge the day. Despite my feelings, I had several people reach out to me today to let me know they were thinking of us. Peter and I received a text message this morning from Dr. Aziza Shad. Dr. Shad is the director of the pediatric oncology department at Georgetown University Hospital, some of you may recall that she was also the doctor on call the week Mattie died. Dr. Shad sent me several messages today. She wanted us to know that she was thinking of us, she acknowledged how hard the day was going to be for us, and though I consider Aziza to be a very passionate and hopeful physician, she also is honest. She echoed my feelings that the loss of Mattie is not something that will ever go away and that over time it will get more challenging and complex. I appreciate her candor and openness about grief, because trite pleasantries I find useless and most certainly untrue.

As time moves on, others around me do expect me to move on. They expect me to adjust to my "new reality" and find a way to carry on and thrive. Some times such sentiments make me angry and some times such sentiments make me feel as if the problem lies within me. Then thankfully I receive a message like Aziza's and I quickly understand that Peter and I are living in a world that most people can't and perhaps shouldn't understand. I can imagine hearing my lament is difficult for those close to me, but I assure you that telling parents who lost a child to move on or that they need someone to professionally listen to them is NOT helpful. It borders on insensitive and it also makes me (I don't speak for all parents grieving the loss of child) further upset. Upset because from my perspective you have no idea what I live with each day, and the fact that I remain standing, functioning, and on a good day with a mission to help others, is amazing.

I received a text message from my friend Alison today who said that she wished a Merry Christmas to "our favorite angel." I wasn't expecting this term, so when I read it, I smiled. I smiled because in the midst of a happy day for her, Alison was telling me that she remembered Mattie.

Our second Christmas without Mattie was challenging. Peter woke up not feeling well and was running an 101 fever for most of the day. Therefore, he really needed to rest and have down time. While Peter was resting, my mom and I went out for a 3.39 mile walk. It seemed to go by fast since we talked about many things along the way. My mom told me that last night as she and my dad were going to bed, they heard a loud sound in their room. As if something had fallen. They looked around and noticed that Mattie's picture (Mattie in the pumpkin patch) had toppled over. The picture sat in a picture frame on a bureau. No one was near the bureau to provide an explanation for the frame falling. My mom took that as some sort of sign that Mattie was here and with us on Christmas Eve. Who knows if that is true, but we have no other explanation for this occurrence.

As we walked I explained some of my anger and feelings to my mom. I constantly try to look for explanations for Mattie's death, as well as try to understand why this happened to us. My mom is a combination of logic and reasoning as well as feeling. So she typically has a way of responding to me in a manner that I can appreciate as it relates to Mattie's death. Her response was that there is no explanation and trying to find one will only proceed to make me more upset. As she continued talking, I couldn't address the subject anymore because I was crying.

Later in the day, I received an article from my friend, Charlie. I posted the article below. It is short, but was written by a mom who lost a child. After reading the article, I told Charlie that I could relate to everything this woman was saying. Her point about being more emotionally "needy" after the loss of a child captured my attention. Mainly because I agree with her sentiment and see this within myself.

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The Death of a Child - You Don't Get Over It by Sheryl Letzgus McGinnis

When someone loses a child, others don't know what to say or do, even close family members struggle with this dilemma. So they take the Occam's Razor approach, - do whatever is the simplest, and quite often that is to do nothing.

People often choose to say nothing, not out of disrespect or because they don't care. I believe they do care but just don't know what to say to us. Many people are afraid to broach the subject of our child's death, because they think it will make us sad. We are already sad! Nothing you can say or do will make us sadder.

By ignoring our child though, by not mentioning his/her name it is as though he or she never existed. This hurts! If you knew my child, a nice remembrance of him or her would be so appreciated. What mother does not want to talk about her child? Just because a child is deceased does not mean that we don't want to talk about them or hear their name or be told nice stories about them by their friends or other loved ones.

We think of our deceased child constantly. He/she lives on in our hearts and minds. While we're looking at you and exchanging pleasantries, you can be sure that our child's memory is only a heartbeat away. So please mention our child to us. If you have a funny anecdote to share, by all means please do. Perhaps it's something we hadn't heard of before. Don't hold back. If our child did a kindness for you, please tell us. It goes without saying of course that we wouldn't want to hear anything negative about our child but something nice will make us feel so good.

Please don't tell us that our child is better off, that he's in heaven. We want our child here with us. We know that you mean well but we feel that our child's place is here with us.

Please don't compare our child's death to another's death. The fact remains that our child is gone. No matter how he/she died, they're gone. That is the bottom line. Just offer a simple heartfelt condolence if you didn't know him/her.

Please don't try to comfort us with words of admonition - "There now, don't cry." We'd rather not cry but sometimes it can't be helped so please allow us to give in to our tears. Tears can be healing. They may make you uncomfortable, but they are a necessary indulgence for us.

Please understand that we will never be the same person that you once knew. Some of us are stronger than others and can deal with the heartache better. Some of us are very good at putting on The Mask and concealing our pain from you. We will laugh again and even enjoy life again but we will never be the same person. How could we be? A significant part of our heart is missing.

Please don't tell us it's been X amount of weeks or months or even years and that we should be over it by now. This is not like coming down with the flu or contracting measles or chicken pox. This is something that is never gotten over. Yes, we will learn to cope but we will never be over it. Again, how could we be? There is no official time limit on mourning.

If you know my child's birthday or remember the anniversary of his/her death, a phone call would be appreciated to let me know you're thinking of me. We're a bit needier than we used to be. Grief does that to a person.
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I attended a Christmas luncheon with my parents today. Their friends invited us and I find it touching that these friends have embraced my parents as part of their family. I had heard about these friends over the years, and today I finally got a chance to meet them and their family. However, we were all saddened that Peter couldn't join us, though I kept checking in on him by phone.

Despite our feelings about the holidays, Peter and I hope that our readers and supporters had a beautiful Christmas with family and friends. My friend Charlie sent me the link below to this very moving video, and based on the religious significance of the day, I felt it was appropriate to post it.

Magnificent -- I Believe: www.andiesisle.com/creation/magnificent.html