MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 SUCCESS!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

December 30, 2010

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/

December 29, 2010

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!"

December 28, 2010

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."

December 27, 2010

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

December 26, 2010

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

December 25, 2010

Friday, December 24, 2010

Friday, December 24, 2010

Tonight's picture was taken in December of 2008. Mattie was in the Lombardi Clinic and had received an infusion of the experimental drug, MTP-PE. In usual fashion, this drug made Mattie ill with a fever and rigors (intense chills, that were frightening to see). In the midst of this reaction, in which he could barely keep his head up, Santa and Mrs. Claus came to visit Mattie. They brought him several gifts (one of which was a Lego set!) and for that moment in time, Mattie lifted his head, smiled for Santa, and then basically collapsed into the pillow right after the picture was taken.

Quote of the day: Tell me in mournful numbers life is but an empty dream! Lives of great men all remind us we can make our lives sublime, and, departing, leave behind us footprints in the sands of time. ~ Henry Wadsworth Longfellow


As I look at the picture I posted of Mattie tonight, it shows the innocence of a child, who despite battling cancer, appreciated the joy and magic of Christmas. Mattie was so sick that day in clinic, he was so debilitated, and yet he mustered the energy to greet Santa and take a picture. The spirit of Mattie speaks loudly and clearly to me here and though Christmas of 2008, was a horrible Christmas, I have found that the past two Christmases without Mattie in them have been even worse.

Though I haven't been reporting this on the blog, I have been suffering with a migraine headache now for about two weeks straight. It was my hope that it would subside with my change in scenery, but it has not. It can be very debilitating to have such intense headaches day in and day out. This morning, my mom, Peter, and I went for a walk. We walked over 3.1 miles and were out in the sunshine and the fresh air. Sometimes walking and air can make me feel better, but unfortunately that did not happen today. I do think the holidays are weighing heavily on Peter and I, and frankly the notion of another year feeling this way is a daunting prospect.

My parents were having friends over to their house tonight, and Peter and I tried to help them with the party. Peter and I actually work very well together in the kitchen and with party planning. Perhaps that comes to my readers as no surprise, since we (from my perspective!) did an excellent job coordinating Mattie's care. We have shared a lot of pain together as a couple but we also share a history of friendship. It is that history that we pull from in times of crisis and pain. We are fortunate to have such resources because our pain outweighs what most couples have to face in a lifetime.

Before my parent's friends came over tonight, we snapped some pictures of the evening to capture the moment. Though I haven't reported this on the blog, Peter began a diet over a month ago. Some of you may be able to see the wonderful progress he has made in this picture. The stress of Mattie's illness and death has been not only emotionally complex, but physically taxing for us. However, I admire Peter's commitment and dedication to regain his health.





Peter snapped this picture of my mom and I. Prior to this, we had worked for several hours to prepare for the party. We were sitting, catching our breaths, before the guests arrived.












My mom took this picture of Peter and I. Notice the metal duck and her duckling sitting next to me. These ducks remind me of Mattie and I. In fact, I recall the first time Mattie saw these ducks, he literally walked up to the mother duck and sat on her back. So though Peter and I were sitting by the fireplace without Mattie with us, he was with me in spirit as I sat next to "Mother Duck" tonight.




Christmas is a very challenging holiday for us. As I look at holiday photos friends are sending me, many of which include pictures of their children in them, Peter and I can't help but feel out of place and very confused. On one hand we are happy for our friends, and love seeing their children grow, and yet on the other hand, this seems like a reminder to us that Mattie is gone and we will never see this growth and development in him or in ourselves as parents. It is very hard not to harbor bitter and angry feelings, and then of course intense guilt for having these feelings toward others. In many ways visiting my parents for the holidays was a very wise decision. We are all feeling the same way, and when I lash out with my feelings they understand where they are coming from. I serve no purpose right now to my friends when I feel the way that I currently do. In fact, I find that my own toxic feelings, if not kept in check, could most definitely harm a friendship.

December 24, 2010

Thursday, December 23, 2010

Thursday, December 23, 2010

Tonight's picture was taken in December of 2008. Mattie was home and sitting on the hospital bed that was temporarily set up in our living room while he was recovering from his second limb salvaging surgery. As you can see Mattie had a very festive wreath around his neck. This creative wreath was made by his art teacher, Debbie, and many of Mattie's classmates wrote messages or drew pictures to him on the leaves of the wreath. This wreath was hung on the inside of our front door in 2008, and there it remains.


Quote of the day: For I know the plans I have for you; plans to comfort you and not to harm you, plans to give you hope and a future. ~ Jeremiah 29:11


We woke up to sunshine today, so we decided to take a day trip to Santa Barbara. Santa Barbara is located about 90 miles from Los Angeles, along the Pacific coast. This stretch of coast along southern Santa Barbara County is often referred to as the "American Riviera" because of its geography and similar climate to that of the French and Italian Rivieras. The drive to Santa Barbara was lovely and we passed many farms along the way. Somehow I do not recall these sights on previous trips. While Peter was driving, I couldn't get over that right along the freeway, pumpkins were growing. I took this picture quickly since the sight was flying passed me at 70mph, but this was definitely an unexpected surprise.

We had lunch at the Biltmore Hotel, which is a historic property in Santa Barbara. I remember visiting this hotel when I was in high school. At that time my maternal grandmother was alive and she traveled with us. It is funny how visiting a place can bring back certain memories to you. The hotel's restaurant overlooks the ocean, which was a sight to see, and the patio doors of the restaurant were open, and sparrows were flying all around us. Peter and I are bird fans, so to us we felt like we were in and amongst nature. Initially as you can see the sun was out, but by the time lunch was over, so was the sun.

Peter snapped a picture of my mom and I on the grounds of the hotel with the pacific ocean in the background. Seeing the ocean and being by it are very therapeutic, not to mention seeing grass and trees! We spent the rest of the day walking through old town Santa Barbara. Santa Barbara has changed a great deal since I last visited it. State Street was charming, vibrant, and filled with people. My mom and I walked for over an hour and explored various stores and sights.






While in Santa Barbara, I received an email from Ann with pictures of Mattie's oak tree. Notice the colorful butterfly hanging from Mattie's tree! This is a new addition to the tree as of TODAY! Thanks to Erica (a fellow preschool mom) and Ann, my mission has been accomplished. I felt terrible leaving on Tuesday without having placed an ornament on Mattie's tree. I wanted Mattie to know that Peter and I are thinking of him on Christmas and everyday. I was deeply touched to get this picture today because we are only a few days away from Christmas, yet Erica found the time to meet up with Ann to give her this ornament, and Ann found a way to get to Mattie's school and place it on his tree. To me these two women gave me a wonderful Christmas gift, and I am not sure they even know it. To me this is what Christmas is about. It is about connections, friendship, and acts of kindness. As you can see in the picture, there are various items hanging from Mattie's tree. One looks like an acorn. This acorn is actually a bird house my in-laws gave us for our wedding anniversary in July. The other item in blue is an origami crane that my friend Junko and her mom made for Mattie's tree gathering event (which was held on Mattie's one year anniversary of his death). As you can see these items are doing beautifully on the tree and I am so happy that this colorful butterfly has now found a home on Mattie's tree. The butterfly has become such an important symbol of Mattie to me, and based on his love for bugs, I can't think of a more appropriate Christmas ornament to remember such a cutie.

On our drive home I snapped several more pictures of Christmas lights. This particular house caught my attention because every part of it seemed to be glowing!
This picture doesn't seem to do this display justice. But basically there is a mechanical Santa on a sleigh and he is trying to land his reindeer on this front lawn. The lawn has red and green flashing lights on it, set up to look like a run way landing strip. It is absolutely adorable and very whimsical.
I would like to end tonight's posting with a large picture of Santa. This fellow caught my attention and I have a feeling Mattie would have absolutely loved him! So in honor of Mattie, I post this Christmas display!

December 23, 2010

Wednesday, December 22, 2010

Wednesday, December 22, 2010

Tonight's picture was taken in December of 2008. Mattie was in the Hospital again and despite his surroundings, we tried very hard to make it feel like Christmas for him. Linda (Mattie's Childlife Specialist) gave Mattie Christmas lights, and they were taped all over his room. In fact, at night time, we would turn all the overhead lights off, and the room was aglow with Christmas lights. As always, Mattie's room was the place to "hang out" and we had lots of visitors (both HEM/ONC and PICU nurses) who would come by and chat and play with Mattie. These nurses will always have a special place in my heart. In this picture, you can see a more whimsical side of Mattie. Someone from Team Mattie brought him Christmas stockings, and instead of hanging them up, he decided to wear them! In his hand was one of his favorite items, a Dunkin Donut's frosted donut, and attached to his wheelchair was the magnetic Santa Alison gave him. Over the course of Mattie's illness, more and more things were attached to his wheelchair. I am not sure the statement Mattie was trying to make, other than I know he appreciated the gifts and they made him feel connected to the outside world.

Quote of the day: Cancer is not God's will. The death of a child is not God's will. Death from automobile accidents are not God's will. The only God worth believing in does not cause the tragedies but lovingly comes into the anguish with us. ~ Madeline L'Engle


We both woke up early this morning since we are still on East Coast time. At 6am, it was still dark out and it was pouring. However, Peter was determined to exercise while away from work, and seeing him in rain pants, a rain jacket, and all bundled up for terrible weather was a sight to see! I have to admire his commitment, because honestly just looking outside the window was uninspiring to get out of bed.

While Peter was out walking, I tried to put some decorations together that my mom had out. However, none of us are really into the spirit of decorating. I have a feeling if my parents weren't having friends over during the holidays even this much wouldn't have been done. It rained today in a way that is almost indescribable. The intensity was terrible and though our intention was to go to the movies, we never got there. Instead we watched movies at home together. We watched a movie today from the 1940s called Good News. It was light, airy, and captured the innocence of a different era. I have found that with Mattie's illness and death, I can only handle watching certain things. I really can't watch and hear about traumas, illnesses, or anything involving violence. Which if you think about most modern TV and movies, this truly limits what I can see. Fortunately I have always been an old movie fan and can turn to these wonderful diversions for stimulating stories, entertainment, and inspiration.


In the midst of a really rotten weather day, I exchanged some very meaningful e-mails with a mom from Mattie's preschool. The irony is I never met Erica, yet she was part of Team Mattie and continues to read the blog. Erica sent me a picture of this beautiful butterfly ornament on her Christmas tree. She wanted me to know that the butterfly is on her tree as a symbol of remembrance of her aunt and Mattie. I was deeply touched by this, especially since she did not know Mattie. Erica has come to understand Mattie through our blog. Through our email exchanges today, I asked her where she got this butterfly ornament, because I have been looking for one to go on Mattie's tree for the holidays. In fact, before I left for California, my goal was to put an ornament on Mattie's tree, as a symbol of our love and remembrance of him at Christmas. However, I never found the ornament I was looking for and while at the airport yesterday I was upset with myself because I was leaving without hanging this gift for Mattie on his oak tree (at his school). So yesterday, I e-mailed Ann and told her about my feelings, and she responded back right away with her willingness to help me accomplish this. Which leads me back to Erica. Erica actually has another butterfly ornament that she wants to give to me. I was thrilled to hear this because what Erica did not know was she was helping me accomplish what I really wanted to do before I left. Erica is coordinating a time with Ann to drop off the butterfly ornament. I am telling you this story because to me all of this was an unexpected gift. I did not expect others to understand my desire to remember Mattie in this way, much less find friends to help me execute my desire. There are so many lessons I have learned in Mattie's death, and one thing that continues to take my breath away is the kindness and generosity of those around me.


Later this afternoon we finally mobilized and got out. Peter snapped this picture since it was the first sign of a blue sky we saw today. It was short lived, but we captured it. As we drive around, it is clear that Christmas is all around us. Yet for us it is bittersweet. I see my parents too are struggling with making sense of Mattie's death, and really none of us get why he had to suffer so much and die. It is a profound loss to our family, and despite the fact that the four of us are together, we all are very aware of the vibrant piece missing from this family equation. I recently heard an analogy which was, losing someone you love is like being left behind and forced to live without a vital organ. Most definitely!

This evening as we were driving home, I snapped some pictures of lights in my parent's neighborhood. Some of my readers may remember in October when I was visiting my parents, I took a picture of a house near them which had hundreds of jack-o-lanterns in the front window of the house. Well low and behold, this house is now decorated for Christmas with hundreds of Santa's in the window. My picture doesn't do it justice, but believe me it captures your attention from the street!
My parents live in the hills of Burbank, and one community near them was once known as "Starlight." Most likely because the houses are in the hills, giving you a feeling of being close to the stars in the sky. Any case, though the community is no longer known as Starlight, they continue to decorate their front yards at Christmas time with huge STARS. It is an amazing site to see, one star after another. As I pass these sights, all I can think of is Mattie's reaction. He would have loved to see the lights and we would have loved to watch him seeing the lights. His joy, happiness, laughter, and smiles were my joy, happiness, laughter, and smiles. Without Mattie around things seem a little less bright, clear, and worthwhile.

Peter took this picture most likely because of the reindeer. Mattie loved mechanical reindeer that lit up, we had several of them, and Mattie always loved watching them from his bedroom window. Mattie's window faced the light show that Peter and he would formulate each year!

I would like to end tonight's posting with a wonderful poem my friend Charlie sent to me today. She captured the feelings we are struggling with this Christmas, and most likely every holiday yet to come.

Holiday Time by Charlie Brown


Of all the special times of the year
Christmas is when we hope to hear
That those we love and hold most dear
Will come and celebrate from far and near.
But what do you do when the one you love
Has gone ahead to heaven above?
When the absence of one is such a void
That the holidays are something you want to avoid.
Then what do you do at this special time
When there no long seems to be reason or rhyme
Or a way to celebrate this special day
When all the joy has gone away?
Christmas is about giving and joy
And the love one has for a little boy
When hope is gone and he is no more
It's hard to pick your heart up from the floor
For those of you who've walked with me
And seen how difficult loss can be
I hope you take the time to say
How much "I love you" everyday
For life is fragile and we never know
When fate will extinguish that lovely glow
So treasure your loved ones while you may
But for those who've lost them, remember to pray.

December 22, 2010

Tuesday, December 21, 2010

Tuesday, December 21, 2010 -- Mattie died 67 weeks ago today.

Tonight's picture was taken in December of 2008, Mattie's last Christmas with us. Of course at the time, I had no idea this was going to be our last Christmas together. Perhaps not knowing was a good thing. That particular night, we took Mattie to Zoo Lights, at the National Zoo in Washington, DC. This is a special event in which the Zoo is opened at night with magical light displays. Mattie was joined by his cousins: Nat, Sydney, and Will, and some of his preschool friends: Kate, Eric, John, and Christopher on this adventure! The one thing I recall about Christmas 2008, was it was VERY hard for Mattie. He was in a great deal of pain, he was upset because he was different from the other kids, and emotionally he was very down and angry. This of course translated down to Peter and I, and it took great strength to keep it together during that time. So unfortunately our last Christmas together was memorable, but NOT in a positive way at all.  

Quote of the day: Thank you for letting me talk and letting me cry. Thank you for cheerful hello's and tearful goodbye's. Thank you for asking questions and saying her name. Thank you for not understanding but sharing my pain. ~ Jacqueline Savageau

Peter and I made it safely to Los Angeles, but what a flight we had. As many of my readers know, flying is not my favorite mode of transportation. The plane left Washington, DC about 45 minutes late. Why? Because each time the plane left the gate, it was sent right back! At least twice!!! I never experienced this before. Our flight was overbooked and literally the plane was taxing away from the gate when the rest of us observed a man still standing in the aisle. This man did not have a seat, yet no one noticed this until we were away from the gate! So naturally once the flight attendants realized what was happening, the plane was sent right back to the gate to drop off the man who did not have a seat. The door closed again and the plane taxied away. While we were moving, out of the corner of my eye, I saw a woman behind us jump up and grab her luggage in the overhead compartment. She then ran up toward the front of the plane and guess what? She wanted to get off the plane because she realized her boyfriend wasn't on it. He was the person asked to get off the plane. So yet again, the plane was sent right back to the gate for a second time. By this point, all of us were laughing, because this was like a comedy show! Eventually we took off and contended with a lot of turbulence. Between being confined in such a small space for almost 6 hours and dealing with all that motion, I am thoroughly worn out tonight. Also I think poor Peter is finally getting feeling back in his hand now, after I had a death grip on it for hours!
Needless to say, we are here safely, but only after a very wild roller coaster ride as we landed. Los Angeles has been inundated with rain for over a week now and we landed through some very thick and ominous clouds.
On Monday night, Peter was very up and very energized over the lunar eclipse. He took some amazing pictures and at 3am he woke me up so I could see this once in a lifetime sight. The moon before my eyes was a brilliant red! I thought I was looking at a red planet and NOT the moon! In a way I couldn't help but think of Mattie when I saw this incredible sight. The moon was reflecting his color. It was a true Mattie Moon!

Peter took many pictures last night, and I am sharing three of them with you. These three photos show you the progression of the eclipse that Peter saw last night.



















Isn't this an incredible sight?!

















I would like to end tonight's posting with a very touching message we received from Mattie's oncologist and our friend, Kristen. Kristen captured the essence of Mattie's spirit in last night's moon beautifully. Kristen wrote, "I've been thinking of you a lot lately because of the Holidays and in the last day or so because of the Lunar Eclipse. I can't help but think of Mattie's Moon. Today is the Winter Solstice and the shortest day (or darkest day) of the year. I heard the last time a full moon was totally eclipsed on the Winter Solstice was in 1554 but read on your blog the last Winter Solstice was 1638. Either way...quite a long time ago. I can't help but believe Mattie is talking to you from heaven saying "Even on the darkest day of the year, even when you can not see me behind the shadows, I am here..."

December 20, 2010

Monday, December 20, 2010

Monday, December 20, 2010

Tonight's picture was taken in December of 2002, Mattie was 8 months old. This was a classic Mattie look when he was consuming a bottle. His eyes would zone out, glaze over, and he would be in absolute peace. It was an expression that stays with me even today, because besides calm and peace, to me Mattie's eyes were showing true love.

Quote of the day: Our grief always brings a gift. It's the gift of greater sensitivity and compassion for others. We learn to rise above our own grief by reaching out and lessening the grief of others. ~ Robert Schuller

Tonight's quote resonates with me because of an email exchange I had today with Karen. As many of my readers know, Karen (not the same Karen who is my lifetime friend) is Keaton's mom, and Keaton lost his battle with Osteosarcoma this year. Karen and I write to each other periodically, but when I read her most recent comment on our blog yesterday, I felt compelled to reach out to her. As I told her, she has a way of writing to me at the most needed of times. At times when I feel quite alone, misunderstood, and worse when I feel like it is hard to continue on. When she responded to the email I sent her today, I wasn't expecting to hear mutual feelings in return. Karen is in Arkansas and I am in Washington, DC. We never met each other, ever! Yet despite this lack of knowledge and history with each other, we are operating and living in parallel worlds. Sometimes when I read Karen's postings on her son's website, I find that my head it nodding up and down in complete agreement with what she is expressing. Not all mom's experience grief in a similar way, or even express it in a similar fashion. Yet Karen and I understand each other, and it is in such moments when someone truly understands and feels what you feel that a deep gift is given and received.

My day began by having to catch Patches (our cat), cage her, and then transport her to our vet for boarding. Patches is a very sensitive and anxious cat, anything from her normal routine is very upsetting to her. I always feel terrible having to put her in her cage and then feel a sense of guilt as I drop her off for boarding. Fortunately though this vet understands Patches and her whole staff LOVES Patches. In fact, as soon as I enter with Patches in hand, everyone makes a big fuss over her. The staff was disappointed today to learn that she will only be there for a week. Remember they are used to having Patches for months on end when Mattie was in treatment.

I went today for a manicure and pedicure. Sometimes I find that relaxing. I brought a book with me, with every intention of reading and not engaging in conversation. But that did not happen. The young lady doing my nails began talking with me, and needless to say we talked the entire time. I learned that she is studying to be a physician's assistant at Georgetown University. That is all I needed to hear, because I had a lot to say on that subject. We talked about careers, family, pets, and of course Mattie. What I find ironic about myself is part of me wants to shut off the outside world and keep to myself, and the other part of me won't. I enjoy learning about other people, how they live their lives, hearing about their observations, thoughts, and feelings.

I spent the rest of a day in a funk however, and my lack of sleep isn't helping how I am feeling emotionally. Though we are boarding a plane tomorrow afternoon, Peter has big plans for tonight. He will be up and watching the Lunar Eclipse. He promises to take pictures, and I find it amazing how the moon will be turning an orange/red color. Seems like a true sign that "Mattie Moon" is out there and exists. Red was Mattie's favorite color, and if the moon is going to turn a color, red seems like the appropriate choice. I have a feeling watching this eclipse will be bittersweet for Peter since this is something he most likely wanted to do with Mattie. They both had this fascination with weather, the moon, and the stars. For those of you who want more information on the eclipse, I included it below.

Tonight I sign off from Washington, DC and will be writing to you from Los Angeles tomorrow. As always, it means a great deal to Peter and I that you continue reading, that you stay connected, and that you care about the future of the Mattie Miracle Cancer Foundation.

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Tonight's Lunar Eclipse


If the sky is clear, experts say the show might be extra spectacular, as the moon will have a reddish glow.
A lunar eclipse takes place when the sun, Earth and moon are all perfectly aligned with the Earth in the middle. When the moon passes behind the Earth, the sun's rays are blocked from striking the moon. This can only occur when the moon is full.  As the moon moves deeper into Earth's shadow, indirect sunlight passes through Earth's atmosphere, casting an orange and red hue over the moon.

Tonight’s Lunar Eclipse for December 20, 2010 makes history as the first Winter Solstice Eclipse in 456 years. In fact, tonight’s total lunar eclipse is so significant that NASA admits that researchers aren’t sure when the next solstice eclipse will happen. To understand the significance of tonight’s event, NASA this week revealed to news how this spectacular differs from other eclipses this year and next year.

First, tonight’s eclipse is a total lunar eclipse. The last total lunar eclipse was two years ago on February 20, 2008. If you miss tonight, you are in luck. Two total lunar eclipse will light up the sky early next year on June 15, 2011 and later on December 10, 2011.

Second, tonight’s spectacular is the second eclipse this year. A partial lunar eclipse lit up the sky on June 26. Another partial can be seen in just days from now on June 4, 2011.

Third, this is the first Winter Solstice lunar eclipse since 1638. When will be the next one? NASA doesn’t even know the answer. “This solstice eclipse is the first in 456 years, although so far it appears that no one has figured out when the next solstice eclipse will be.”

So when is the start time? Unlike other spectaculars in the sky this year, tonight’s total lunar eclipse will reach different peak times on the west coast compared to the east coast, says NASA to news. The east coast won’t be able to see the totality commencing until after midnight. But on the west coast, the totality will begin before midnight. Outside of North America, it will appear as a partial, not total, lunar eclipse, says NASA to news.

Start time will be Tuesday December 21st at 1:33 am EST on the east coast; west coast residents will see tonight’s total lunar eclipse commence on Monday, Dec. 20th, at 10:33 pm PST. This time refers to when the eclipse will begin (partially).

“Totality”, which refers to the total lunar eclipse, will be achieved at 02:41 am EST on the east coast, and 11:41 pm PST on the west coast. Totality will last 72 minutes, says NASA to news.
And when is the best time to see tonight’s event? NASA reveals they know the exact peak time for tonight’s total lunar eclipse. It will be at 03:17 am EST or 17 minutes past midnight PST.
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December 19, 2010

Sunday, December 19, 2010

Sunday, December 19, 2010

Tonight's picture was taken in December of 2003. Mattie was a year and a half old and was sitting in my parents backyard. We had just finished picking their orange and grapefruit trees, and Mattie was having a great time with sorting, counting, and examining the fruit. The idea of picking fruit right off of a tree was intriguing to Mattie and it was at that point I began to refer to him as my "farmer Brown!"


Quote of the day: Absent in body, but present in spirit. ~ Corinthians 1:3


I began the day in a bad mood and unfortunately it did not improve as the day went on. I do think lack of sleep isn't helping my state of affairs either. Peter is a wise man, and during these moods, he knows that staying home and being couped up isn't going to improve my situation. So out we went today. Along the way, we went shoe shopping, which typically can perk me up. But despite doing that, I was still in a terrible funk. As I sat quietly in the car, suggesting that we go home, Peter decided that most likely wouldn't be a good idea. So instead he took me out to lunch. At lunch, Peter looked at me and told me just how exhausted I looked and that he was worried about me. I think I handle grief in waves. With the holidays fast approaching, I am being hit by a full blown grief tidal wave. When you are trying to stay afloat it is sometimes difficult to talk and reach out to others, which is where I am currently at.

Peter and I chatted about a lot of things over lunch and we are getting ready to leave for our trip to Los Angeles on Tuesday. We decided to spend the holidays with my parents. It makes no sense for us to spend it apart, especially since we are all feeling the same way about Christmas and New Year's. Peter will be in California for a week, and I will stay there two weeks. In order to get ready for this trip, there are many things we have to do, such as assuring that Patches is going to be well taken care of and in good hands. In addition, over the past two days I have been working on uploading pictures to the blog as well as quotes, so that I do not have to worry about doing this component of my blogging while away. So on Tuesday, you will be hearing from me in California. It is my hope that being away helps my sleeping and my intense migraines.

I realize tonight is not a typical blog posting. But based on how I am feeling with utter exhaustion, it is my hope that my readers understand.