Tuesday, December 25, 2012

Tuesday, December 25, 2012 -- Mattie died 172 weeks ago today.

Tonight's picture was taken on December 5, 2002. Though we snapped many more photos that afternoon (four of which you have seen the past few nights on the blog), this was the photo we selected for our first family Christmas card. I liked it because you could see Mattie's eyes and smile! 


Quote of the day: No matter how much he talked, she never answered him, but he knew she was still there. He knew it was like the soldiers he had read about. They would have an arm or a leg blown off, and for days, even weeks after it happened, they could still feel the arm itching, the leg itching, the mother calling. ~ Pat Cunningham Devoto

 

I woke up this morning to the following four pictures. Peter went for a walk around Roosevelt Island. A place which holds a deep connection for us to Mattie. While walking Peter saw all the wonderful signs of nature that we so appreciate and which help us feel Mattie's spirit. A pond full of ducks was always a sight Mattie loved and enjoyed!

 

Along Peter's walk, he also spotted a hawk. In a way I felt as if Peter were including me in on his journey!

 

I know exactly why Peter snapped a picture of a Crinkly Hedge Apple! Mattie loved to pick these fruits up while visiting the Island. In fact, on occasion he would pick one up and take it home with us. So no doubt this picture was in memory of Mattie!

 

Here is our Roosevelt Island resident Great Blue Heron. The herons love to perch in this particular tree and we love to be able to spot them!

 

 

We spent the majority of the day setting up for a Christmas dinner party that my parent's were hosting. We have been preparing foods for two days! Before their guests arrived I wanted to snap a few pictures of us together. So here you can see my parents next to one of the several little trees we set up around the house.

 

My mom and I!

Peter and I continue on our journey with grief and as such we sometimes need very different things socially. Peter shies away from most social engagements and parties, yet a part of me somehow feels like I want to try going and reconnect with people now that Mattie is gone. At times however, like Peter, I too choose not to go to things because I just do not have the emotional energy or feel as if I won't fit in. After my experience tonight at this dinner, I can say that I have a much better appreciation for why Peter makes the decisions that he does about social gatherings! He is indeed correct.... sometimes these events can cause more damage than benefit! Tonight was just such an occasion.

 

One of my parent's friends said several things to me that practically sent me over the edge. In fact I am quite certain that if this person were my friend I would have verbally lashed out at him and put him in his place. In addition, I most likely would have concluded that he and I are not on the same wavelength and that overall he is both insensitive and should keep his opinions to himself. But he isn't my friend and therefore despite saying something to him, I did bite my tongue and spared him a lecture.

 

At dinner this couple had many questions as to why Peter is in DC and I am here in California. The answer to that is quite simple. Peter has no more vacation days and has to work. Yet I elaborated by saying that to most people today is Christmas but for Peter and I it is like any other day. After losing our only child, our world got redefined. Clearly this answer did not sit well with him, so he continued to dialogue with me. He basically asked me when I was going to get over "this" and move on with my life. He continued by suggesting that I go to therapy. I told him that I realize therapy can't solve my particular issue and that for the most part I function and am productive, but realize that grief over the loss of a child is something that will be with me throughout my life. He disagreed with my statement and then had the audacity to ask me why other parents who have dealt with the loss of a child handle it much better than I do!?? Frankly by that point I did not think the question merited an answer.

 

I continue to be plagued by the insensitivity of others and Peter is SO right. People can say hurtful things and they also can send you for a tail spin. Especially on a tough day like today. We are very cognizant of our friends celebrating Christmas with their children, which is why hearing such an insensitive comment like this does impact me. No one has the right to judge how I am dealing with Mattie's death, much less tell me what I need, or worse to compare me to people. Who are these people? I am always amazed when others tell me I need counseling, because they think others are doing better than me. However, ironically the majority of people in my life do not know many people who lost a child to cancer. So therefore, who are you comparing me to?! I on the other hand know several moms who lost a child to cancer and I can assure you we are a part of a special group and we are a group whose lives have been permanently altered. If you would like us to forget about our lost child and "move on," it isn't going to happen. I am simply incensed by this notion tonight and at times get very hurt that I have to justify myself to anyone. I shouldn't have to, grief should just be accepted, and understood. But once again, tonight illustrated to me that people do not have the foggiest comprehension of grief and it gets tiring to constantly have to advocate for one's self, explain one's self, and try to get others to see that the issues are not unique to me. However after a long day of cooking and cleaning, I have to admit I neither care to educate this man, nor am I apt to venture out any time soon and attend another social engagement.

Monday, December 24, 2012

 

Monday, December 24, 2012

Tonight's picture was taken on December 5, 2002. This was a fourth in a series of photos taken of Mattie, on the quest to create the "perfect" first family Christmas card. I love this photo because Mattie was looking directly at me. Most likely because I was far more entertaining than the camera in front of him. Tomorrow night I will show you the official 2002 photo that went out to friends and family that year!


Quote of the day: What had happened still seemed implausible. A person was present your entire life, and then one day she disappeared and never came back. It resisted belief. ~ Meghan O'Rourke

 

After cooking up a storm today, my mom and I went for a walk later in the afternoon. We tried walking in the morning but it was raining. However, the sun did come out and for several hours it was beautiful. While we were walking, a beautiful Mattie Moon graced us with his presence. It seems rather symbolic on Christmas Eve..... Mattie watching over us! Sometimes I wonder if Mattie is as pained by our separation as those of us on earth who miss his presence. Though it is Christmas Eve, to us it is just a Monday. As my dad said to me today.... "Christmas is depressing." I couldn't have said it better! Peter text messaged me throughout the day, since he was working, and said that the whole world goes on around him and yet he feels like an island. Alienated and isolated because the majority of those around us can't truly comprehend losing a child the way we have and yet be forced to carry on.

 

 

While walking, I captured a beautiful sunset!

 

Since today is the day before Christmas, it seems fitting to share the following article with you entitled, "Do you believe in Santa Claus." The article discusses the historic origin of Santa Claus and how he got his jolly looking disposition. My Dad gave me the article, but what caught my attention in it were the last several paragraphs. Especially at the end where the author suggest that Santa lives inside all of us. Santa's spirit shines brightly in us when we are kind and benevolent to others. As this year is coming to a close soon, my wish is that we all work hard at finding the Santa within us and to not be afraid to explore that side of ourselves!

 

Do you believe in Santa Claus (part two) by Salvatore Di Vita

In the first half of this two-part discussion, we left off with the question, “How did St. Nicholas become Santa Claus?”

I must answer by first explaining that the custom of gift-giving, especially to children during the Christmas Season, is believed to be associated with the biblical narration of the magi: the three wise men who paid homage to the infant Jesus, bearing gifts of gold, frankincense and Myrrh (Matthew 2:1-12).

 

When it came to children and gift-giving, the kindness and generosity of St. Nicholas, whose feast day happens to be close to Christmas, became known world-wide and somehow related to the Christmas Holiday.

So, how did St. Nicholas become Santa Claus? Many nations around the world adopted St. Nicholas as its own gift-giver. Consequently, he began to take on a different personality and a different name consistent with the customs of that nation. For the most part, what emerged was a person who delivered presents to children at Christmas time, a person who mysteriously came with gifts and left them without being seen.

In the United Kingdom, the mythical gift-giver became known as Father Christmas, the French called him Père Nöel and in Germany he was Christ Kind.

 

In the United States, we have the Dutch to thank for the name of Santa Claus that we have come to know. Dutch settlers during the early days of America brought with them stories of St. Nicholas calling him Kris Kringle then Sinterklaas which eventually came to be pronounced as Santa Claus. In Spain and almost all of Hispanic South America he is Papá Noel or Padre Noel. Brazilians call him Papai Noel while the Portuguese refer to him as Pai Natal. Armenians called him Kaghand Papik and in India his name became Father Christmas. Romanians call him Moş Crăciun. In Turkey he is Noel Baba and in Italy he is known as Babbo Natale.

 

Why was this mysterious gift giver depicted as a kindly plump old man with a white beard and a red suit? For an answer to this question, we must reach back to the year 1862, when Thomas Nast’s illustration of “Saint Nick” graced the cover of Harper’s Weekly Magazine. It was an instant hit. But besides the depiction of Santa Claus on the cover, it also contained a centerfold dedicated to the sacrifices which the Union Soldiers were making during the early days of the Civil War. Many young men were experiencing their first Christmas away from their families. So, it is not surprising that this issue of Harper’s Weekly became a collector’s item.

Nast illustrated Santa as a kindly symbol of Christmas-giving: It was an image of his childhood memories and his native traditional German understanding of a kindly plump old man with a white beard and a red suit. It was Thomas Nast’s conception of the fourth century bishop known as St. Nicholas.

As time went on, the shepherd’s crosier, or pastoral staff which he carried as a symbol of his authority as bishop was replaced with a large candy cane. By the 1890s, the first Santa Clauses were beginning to make appearances in department stores all over New York City. Eventually, Santa Claus became even more popular, making his appearance at office parties, neighborhoods, private homes and wherever Christmas was being celebrated. The job of being Santa Clause was reserved for those who didn’t miss too many meals and were able to fill the suit with some semblance of authenticity. Others, with less of a paunch, resorted to stuffing the costume with pillows but in almost all cases the white beard was phony.

We must remember that the Christmas holiday celebrates the birth of Christ, not St. Nicholas. St. Nicholas or San Nicola is the patron of the city of Bari, Italy, where it is believed he is buried in the Basilica of Saint Nicholas or La Basilica di San Nicola. The Basilica was founded in 1087 and is an important pilgrimage destination both for Roman Catholics and Orthodox Christians from Eastern Europe.

Through the many years, the names Saint Nicholas and Santa Claus have become synonymous. Either name will conjure up the same image and spirit of compassion and generosity. To answer the question of where he can be found, I recommend that anyone looking for Santa Claus, go the nearest mirror. Santa Claus is inside that person looking back at you. The spirit of Santa Claus has been known to take up residency in many of us, often right around Christmas time. In the more fortunate among us, however, it resides all year long. So a word of caution: it has been known to be contagious.

My granddaughter is all grown up now and doesn’t talk about Santa Claus anymore, but if she were to ask me today if I believe in Santa Claus, I would again answer, “Yes, of course I do.” This time I would be telling the truth, because my concept of Santa Claus is the belief in the spirit of Christmas which resides in one’s benevolence towards others and in the spirit of one who is resting peacefully in Bari, Italy.

 

Sunday, December 23, 2012

 

Sunday, December 23, 2012

 

Tonight's picture was taken on December 5, 2002. This was third in a series of photos I have been showing the past couple of nights on the blog! One of the things Mattie loved to do in his saucer was dance. So I entitled this photo, The Dancing Santa Mattie. Needless to say this photo wasn't featured on the front of our Christmas card in 2002. However, as I look at this photo, I would like you to notice Mattie's nose. I always loved the part of his nose by his nostrils, because looking at his nose at this angle, it always looked like an upside down heart to me!
 

Quote of the day: Hope in the beginning feels like such a violation of the loss, and yet without it we couldn't survive. ~ Gail Caldwell


Last night, a close friend of ours sent Peter and I the email below. It is funny how such a message from someone who has walked the Mattie battle with us can make such a difference in our lives. What is the best way to wish Peter and me a Merry Christmas and a Happy New Year? I don't know, since I have NO personal experience helping a friend through the loss of a child. I am learning how to manage the experience for myself and therefore it is sometimes hard to let others in who want to help us. But what I do know is that receiving this message somehow made me feel as if a friend got it, understood what life looks like for us now especially during the holidays, and wasn't afraid to write it. She also knows how I am moved by music and sent me the song below to let us know we are not alone. Four VERY powerful words. The message we received said............................

"Have you heard the song, “Christmas Card,” by Steven Curtis Chapman? Maybe I’m the 1000th person to tell you this, but I heard this beautiful song and wanted to send it to you. The song is about seeing someone at Christmastime, who is clearly suffering. It says, “I’m sending you this Christmas Card to tell you somebody loves you.” It was so beautiful, it made me cry and made me think of you guys immediately. What surprised me more, was when I just went online to research the artist. Turns out, he lost his five year-old daughter almost five years ago — tragic car accident where his older son accidentally ran her over. I guess that’s why he was able to capture your feelings so well. Long way of saying, I am thinking about you during these incredibly difficult holiday times. And, wanted you to know that you’re not alone!"

http://www.youtube.com/watch?v=3JlViVua1bM

Today was a busy day of trying to begin preparations for Christmas dinner. My parents are having several friends over to their home on Tuesday and such a dinner requires thought and staging. Before I had Mattie and even when I was raising Mattie I did a lot of cooking. Cooking for lots of people. If you know me well, then you know that I LOVE food and LOVE eating! To me it is an art form and as such I also love to cook. Yet while Mattie was battling cancer and after he died, my cooking has been curtailed. I no longer have people over to our home and I no longer cook dinners for people. I am not sure why, but I suppose Peter and I don't feel like we are in the entertaining mood. So what I am saying is cooking on this magnitude is not something I have done for years.

This evening we got out of the house for a while for a change of scenery. On our drive back to my parent's house, I started snapping a few pictures of holiday lights. What is fascinating about this house is the mailbox. It is automated. It opens and closes on its own and it reminded me of the North Pole based on how it is decorated with red and white stripes.

 

This house was literally ALL aglow. You can see it from down the block!

 

Santa is taller than the house and practically begs you to stop the car and check him out.

 

Because my parent's neighborhood is in the hills, it was nicknamed years ago... Starlight. Mainly because you can see the stars so clearly from up here. At Christmas time many of the houses display HUGE stars on their front lawn. I tried to capture three houses in a row with such stars!
 

Saturday, December 22, 2012

Saturday, December 22, 2012

Tonight's picture was taken on December 5, 2002. Last night I decided to post the first photo in  a series that was taken on December 5th. Our goal that day to to take the "perfect" Christmas photo for our first family holiday card. We took MANY photos that afternoon. Peter was snapping away at the camera and I was jumping around in front of Mattie trying to get his attention. I clearly got it here, with his laughter. Again, a cute photo, but this was NOT what was featured on our 2002 card!


Quote of the day: How easy it was to lose everything you had always thought you'd have forever. ~ Cassandra Clare

This morning I came across this story about a mom in England who went to court because she did not want her seven year old son to be given radiation treatment for his brain cancer. The boy's doctors and his father however felt this was the only treatment which was going to give this boy a chance at survival. The boy's mother ran away with the boy, to avoid treatment, and ultimately she wanted to protect him from what she deemed would be scary, toxic, and scaring treatment to her son.

 

I imagine to anyone reading this story, the first reaction you have is that something is very wrong with this mother. How could she deny him standard and the most effective treatments available to combat cancer? Peter and I had to make challenging decisions for Mattie throughout his battle. However, the guiding factor was always life over death. Even life that meant disability, impairment, and being disfigured. These are not easy decisions for a parent to make and I unfortunately understand this mom's fears all too well. In fact, everything she is worried about is most likely going to happen maybe ten fold once her son is on treatment. As a mom we worry about the psychological and emotional health of our children, and the long term impact. Unfortunately medical personnel do not always look at these issues in the same light. I am not excusing this mom's behavior, but I do understand it. If you want to read more about this mom and the court's decision, please follow this link: "Neon Roberts: judge criticises mother over lost cancer treatment legal row"

http://www.telegraph.co.uk/health/healthnews/9762020/Neon-Roberts-judge-criticises-mother-over-lost-cancer-treatment-legal-row.html

 

When I woke up this morning and looked outside, this is what I saw. Living up in the hills is quite beautiful when the sun is shining and it is a clear day. I hear that it will be raining all next week, so I am trying not to think about the greyness headed our way. Yet life in the hills surrounds you with birds, beautiful terrain, less people, and my favorites... bunnies and deer! 

As we were returning home this evening, I glanced up the hill and low and behold I could see the "LA Cappuccino's." Naturally this is only my name for these beautiful blacktail deer. But their coats are such a rich and deep brown!

Near my parent's house is a patch of land and no matter what time of day it is, you can ALWAYS see a bunny grazing in the greens. It is a special sight!

Friday, December 21, 2012

Friday, December 21, 2012

Tonight's picture was taken on December 5, 2002. We had a brief dusting of snow that day and I got it in my head that this would make the perfect backdrop for a Christmas photo for our holiday cards. After all, it was Mattie's first Christmas with us. He was eight months old! Over the next couple of nights I will show you some of the funny photos we captured of Mattie. We must have snapped about 30 pictures of him outside, sitting in his entertainment saucer. Mattie did not know what to make out of us. I dressed him up as Santa, threw a red plaid blanket over the saucer, and we dragged him outside. Needless to say, though this was a cute photo, it wasn't the one that landed up on our 2002 card!


Quote of the day: ...recognizing that there is more heartbreak in continuous disappointment than a void...  ~ Emily Giffin


One of the beauties of Southern California is seeing so much of the sun. I woke up this morning to sunshine and as by mid-day it was warm enough to walk around with just a sweater on. Rather than a heavy coat! But naturally like any desert like terrain, by the evening it turns cold... in the 40s. I am very used to the grey days of Washington, DC during the winter time, yet that doesn't mean I like it. In fact, I find it quite depressing. Which of course doesn't help my mood, especially at this time of year.

Though it is December, the bunnies which inhabit my parent's neighborhood are out in FULL force. In fact, these bunnies even graze during the evening hours. Since I am a city dweller surrounded by concrete, lovely and peaceful signs of nature are special to me. I enjoyed these bunny greetings and am awaiting my first sighting of the LA Cappuccino's, my nickname for the beautiful blacktail deer which live in the hills near my parent's house. My parent's neighborhood is decorated beautifully for Christmas. There are lights everywhere. Especially BIG star lights, to symbolize the "starlight" which can be seen up in the hills. In the next few days I will take some wonderful night pictures. Living in the city of DC, I rarely see our community lit up for Christmas. There is something magical about seeing lights in the winter time. It captures one's attention and imagination, and I appreciate the creativity. In a way, to me it is like illuminated art work created by others for all of us to enjoy. I do find some sort of joy in the lights.

When I am home in DC, I spend an inordinate amount of time glued to a computer. A great deal of the Foundation work that I do means writing, responding to inquiries, connecting with others, and so forth. Yet such intense computer time affects my eyes and makes my headaches worse. I spent little to no time at a computer today. Instead, I was cooking, decorating a few things around my parent's house, and then we went out to lunch and chatted. It may not sound like an extraordinary day to my readers, but it was a day where I wasn't rushed, stressed out, or working around deadlines and other pressures. So that feels extraordinary!
 

Thursday, December 20, 2012

Thursday, December 20, 2012

Tonight's picture was taken in December of 2006. Mattie was 4 years old and very healthy and full of life. You can see that Mattie had his Lightning McQueen (he LOVED the movie, Cars) slippers on and I caught him playing around the Christmas Tree. Mattie loved his Christmas train which moved on a track around the base of the tree. Mattie also loved playing with his toy cars by the Christmas presents which were beginning to accumulate near the tree. 







Quote of the day: How many times can a heart be shattered and still be pieced back together? How many times before the damage is irreparable? ~ Gwenn Wright


I am safely in Los Angeles tonight. As so many of my readers know, I am NOT in love with airplanes. Today's flight was PACKED, which only contributes to my edginess. Not one seat was open. Before I boarded the plane, I was walking around the terminal. I find walking very helpful. While walking, I noticed that there was a smoking room at Dulles Airport, which literally looks like a glass enclosed room, in which people were sitting and smoking. As an observer on the outside of the room, I can see the smoke but fortunately can't smell it. While I was passing this room, two twenty something year old men headed for the smoking room, and in jest they said to each other...... "Let's go in and get cancer!" This commentary truly perplexed me as if they wanted to test fate. My hunch is at their age they feel invincible and have no concept how horrific cancer is to battle. Nonetheless, I found their statement not only immature but terribly insensitive.

My parents met me at the airport and my mom prepared me for cold weather. Tonight it is in the 40s and I am very grateful to have my winter coat with me! I am signing off for the evening because despite it being 9:30pm in California, I am on East Coast time.
 

Wednesday, December 19, 2012

Wednesday, December 19, 2012

Tonight's picture was taken in December of 2008. Mattie was in the hospital and one of his favorite characters, Scooby Doo, came by to visit. Mattie was a HUGE Scooby Doo fan and Peter and I practically saw every episode and movie of Scooby Doo multiple times. Other than Legos, I would say Scooby Doo was the other thing that provided us with a bit of peace and diversion.


Quote of the day: Faith is a sounder guide than reason. Reason can go only so far, but faith has no limits. ~ Blaise Pascal


Today was a very busy day filled with Foundation work. In addition to working, I began packing. I leave tomorrow for Los Angeles to visit my parents for two weeks. So the next time you hear from me, I will be in California. Patches, our cat, becomes very anxious when she sees luggage and when she observes the packing process. I have learned the art of packing in just the right way so it doesn't look like I am necessarily packing. I do this just to spare Patches' nerves. To a non-cat lover this probably sounds absolutely crazy, however, for my readers who love our furry friends, you understand all the games you need to play just to make these tiny members of your family happy.

I am signing off for tonight, but wanted to leave you with a message I received today from my friend and colleague, Nancy. Nancy wrote, "I didn't get a chance to read the blog over the last few days. Needless to say, but say I will that once again your comments are thought provoking and compassionate. I just read the Lisa Long's article. It was very powerful and sad. We attempt to fix all kinds of health issues with band aides and this latest incident appears to be the result. Fear is such a powerful emotion! Even the most competent mental health clinician is hampered by so many rules and regulations that so many go untreated or mistreated. It is terrible to realize that one might have to use the "police button" in order to get some much needed intervention. We ask ourselves what else can be done. As mental health clinicians and educators, we have been exposed to some of the largest organizations that deal with mental health and we are still so far away from supporting and helping families with young children and their issues. The stigmatization of a mental health need is so embarassing or expensive for many that treatment is not received unless it is an emergency room visit and that returns us to the band aid. There is so much dialogue that needs to be spoken. I'm not sure how this will all end, however, I am hopeful that something positive will come from this."
 

Tuesday, December 18, 2012

Tuesday, December 18, 2012 -- Mattie died 171 weeks ago today.

Tonight's picture was taken in December of 2008. Mattie was home for Christmas recovering from his surgeries. This was not a good day for us. We tried hard to bring some sort of cheer and joy into Mattie's life, but understandably this was close to impossible to do. In this photo you can see Peter helping Mattie open up his Christmas gifts. After Mattie's surgeries, he was fortunately able to use his hands for fine motor work, but gross motor tasks were challenging for Mattie. Therefore, even unwrapping Christmas gifts required help.


Quote of the day: Constant kindness can accomplish much. As the sun makes ice melt, kindness causes misunderstanding, mistrust and hostility to evaporate. ~ Albert Schweitzer



Today was the first day in which I can safely say my bladder felt much better and I was able to go back to exercising. So I attended my zumba class. For the past two weeks even walking was painful! It is hard to describe the pain, but considering I live with daily headaches and I am able to work through them, my tolerance for pain is high! But when this bladder condition flairs up it takes over my life, and then I begin to worry.... will this pain ever go away!!!!???

It was a glorious weather day in Washington, DC today, it felt just like spring! Even our dance classroom had all the windows open letting in the fresh air! That alone made me feel better, along with listening to music and jumping around.

I had the opportunity to meet up with my friend Tina today. She surprised me with a necklace her friend made that features a beautiful butterfly pendant. It is always special to receive a butterfly, because to me it says indirectly that Mattie is being thought about. Tina and I chatted about the Connecticut massacre, and though Tina probably knew this before meeting me, she most certainly knows now (being an avid blog reader) that there is no timeline for dealing with the death of a child. Which is why I am perplexed with reactions from others regarding this tragedy. Some people are tired of hearing about Sandy Hook in the news and they feel they have dealt with it and now it is time to "move on." In fact I heard the term "move on" several times on the radio today, and I wanted to scream. For those unaffected directly by the death of a child, you are lucky enough to be able to move on, but I know ALL TOO well, that the 20 families in Newtown, CT, who lost children, moving on isn't anywhere in their foreseeable future.

But what happens to these CT families once the news media has milked every ounce of a story possible out of this devastation? I know the answer and it isn't pretty! What will happen is the media will pull out of CT and move onto the next sensational story. I get it, it is what sells, it is part of their livelihood and so forth. Unfortunately though, the pain and anguish have just begun for these families and when real grief support is needed, the army of people surrounding the community now will dwindle if not disappear altogether. It is the challenges of grief. For the griever of a child, our pain is very real and fresh, but for the outside observer of us the level of impatience grows ever deeper wondering when the haze, depression, and greyness will lift in us.

The latest news about the Connecticut tragedy centers around the motive Adam Lanza had for killing his mother and 26 other people. It is alleged that Adam was aware that his mother was petitioning the court for conservatorship, so she could have him committed. A conservatorship refers to the legal responsibilities over a person who is mentally ill, including those who are psychotic, suicidal, incapacitated or is in some other way unable to make legal, medical or financial decisions on behalf of themselves.

As a mental health professional, I am aware of this, but I am not sure all my readers are and that is Adam's mother had to file for a conservatorship because her son was an adult. In the U.S., a parent can NOT commit an adult child into a hospital or psychiatric facility against his will. Which is why I stated last night that the majority of parents are left with few options other than the penal system to rehabilitate their adult child.

It saddens me that so many parents live in fear of their children, and I am sure you are saying to yourself.... "this couldn't happen to me! I know how to parent my child, set boundaries and limits, and provide the necessary guidance and discipline." The reality however is that in the past week alone, I have met two people who are in essence like Adam Lanza's mother. These are not uneducated individuals, nor are these individuals without parenting skills or love for their children. However, just like Adam Lanza's mother they are at their WIT'S end!!!! These parents walk amongst us, afraid of their child's behavior, feeling hopeless about how this private torture will end, and of course at the heart of the matter they are deeply worried about the future of their child. In the midst of this family nightmare, this wrecks havoc on the entire family system. Sometimes other siblings have to be removed from the family's home for their own safety and the mental illness of a child can test even the best of marriages. Certainly if Adam Lanza didn't snap, his mother would have.

I am in no way condoning or trying to explain the thinkings of Adam Lanza, but I do feel the need to pause and reflect on how this mom could be at her wit's end and yet no one was there to truly help her. A system gone VERY wrong, and as we can see the consequences are deadly. Innocent and precious young lives have been taken away and the families left behind have been dealt a blow of a lifetime of irreputable damage. Who was listening to the cries of Adam Lanza's mother? I wonder if someone did listen and offered help, would this have altered what happened on December 14th?

Monday, December 17, 2012

Monday, December 17, 2012

Tonight's picture was taken in December of 2008. As you can see Mattie wasn't feeling well. He came to the clinic that day for his bi-weekly administration of an experimental treatment. This immunotherapy always made Mattie weak, feverish, and debilitated. Mattie did not want to lie down in bed, so instead I tried to prop his head up with a pillow. Mattie was so wiped out that even with a visit from Santa, Mattie could hardly move. Santa did not skip a beat. He talked with Mattie and left him ALL of his favorite toys (thanks to Elf Linda -- aka Mattie's child life specialist)..... Legos and remote controlled cars!


Quote of the day: For the first time in my life I understood the meaning of the word 'never.' And it's really awful. You say the word a hundred times a day but you don't really know what you're saying until you're faced with a real 'never again.' ~ Muriel Barbery


Last night my mom sent me an article entitled, "I am Adam Lanza's Mother." Today I learned that this article has been spread ALL over the Internet. So by the time some of my readers get to tonight's blog posting, it is possible you have already read it today. Nonetheless, the article is so powerful from my perspective that I attached it below in case you missed it. It is powerful because it isn't written by a politician, by an academician, by a researcher or clinician, but by a mother who lives with a child who has a mental illness. Liza Long shares the fear, heartache, frustration, discouragement, and helplessness she feels as she tries desperately to raise her son. A son who can change moods on a dime and threaten her life and that of his siblings. Yet who can Liza turn to? At the moment, due to his age, she is his legal guardian and therefore she still has some outlets at her disposal. Yet she knows as he gets closer to age 18, then what? The decision so many parents like Liza are forced to make is to have her son committed for a crime and sent to PRISON! In the United States, our penal system is the number one institution young adults with mental illness land up! I wish I could say Liza's story is an isolated one, but unfortunately it is not. I have heard this from several parents both in my professional and personal life.

The sad commentary about December 14, 2012, is that innocent lives were taken because mental health screenings and resources weren't available to the Lanza family AND that mental illness is still a taboo notion! Every time I hear the debate about gun control, my head starts spinning. We are doing a disservice to every child and family out there by politicizing the Connecticut shootings. Furthermore, I am quite certain that as human beings we know how to feel and react to this tragedy without the news media and politicians guiding our emotions.

In the midst of this horrific tragedy, the childhood cancer community has its own set of feelings coming across the Internet. I am not sure how I feel about this, since I am sensitive to the loss of any life. A loss of a child, by any means, is unnatural and sickening. However, the cancer community wants to remind people that in the Connecticut shootings, 20 children died. Yet every day in the United States, 36 children a day are diagnosed with cancer, and around 4 a DAY die from the disease. Yet as a nation, we saw flares released at last night's NFL football games, one for each of the children and adults who died at Sandy Hook Elementary. Yet there are NO flares for each child who dies daily from cancer. I am not saying this is a fair comparison, but I am saying, these are feelings, raw feelings being expressed in our cyberspace. Keep in mind that at the heart of the comparison is simply PAIN!

Regardless of how I feel about this comparison, one thing is clear. At the end of the day we ALL LOST OUR CHILDREN. In addition, I also know that after about a YEAR (for those of us who are lucky), the support, reflections, and understanding dwindles in those around us. I understand the path these families are now walking and will be forced to walk in the future.

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I Am Adam Lanza’s Mother by Liza Long

Three days before 20-year-old Adam Lanza killed his mother, then opened fire on a classroom full of Connecticut kindergartners, my 13-year-old son Michael (name changed) missed his bus because he was wearing the wrong color pants. "I can wear these pants," he said, his tone increasingly belligerent, the black-hole pupils of his eyes swallowing the blue irises.

"They are navy blue," I told him. "Your school's dress code says black or khaki pants only." "They told me I could wear these," he insisted. "You're a stupid bitch. I can wear whatever pants I want to. This is America. I have rights!" "You can't wear whatever pants you want to," I said, my tone affable, reasonable. "And you definitely cannot call me a stupid bitch. You're grounded from electronics for the rest of the day. Now get in the car, and I will take you to school."

I live with a son who is mentally ill. I love my son. But he terrifies me. A few weeks ago, Michael pulled a knife and threatened to kill me and then himself after I asked him to return his overdue library books. His 7- and 9-year-old siblings knew the safety plan—they ran to the car and locked the doors before I even asked them to. I managed to get the knife from Michael, then methodically collected all the sharp objects in the house into a single Tupperware container that now travels with me. Through it all, he continued to scream insults at me and threaten to kill or hurt me. That conflict ended with three burly police officers and a paramedic wrestling my son onto a gurney for an expensive ambulance ride to the local emergency room. The mental hospital didn't have any beds that day, and Michael calmed down nicely in the ER, so they sent us home with a prescription for Zyprexa and a follow-up visit with a local pediatric psychiatrist.

We still don't know what's wrong with Michael. Autism spectrum, ADHD, Oppositional Defiant or Intermittent Explosive Disorder have all been tossed around at various meetings with probation officers and social workers and counselors and teachers and school administrators. He's been on a slew of antipsychotic and mood-altering pharmaceuticals, a Russian novel of behavioral plans. Nothing seems to work.

At the start of seventh grade, Michael was accepted to an accelerated program for highly gifted math and science students. His IQ is off the charts. When he's in a good mood, he will gladly bend your ear on subjects ranging from Greek mythology to the differences between Einsteinian and Newtonian physics to Doctor Who. He's in a good mood most of the time. But when he's not, watch out. And it's impossible to predict what will set him off.

Several weeks into his new junior high school, Michael began exhibiting increasingly odd and threatening behaviors at school. We decided to transfer him to the district's most restrictive behavioral program, a contained school environment where children who can't function in normal classrooms can access their right to free public babysitting from 7:30 to 1:50 Monday through Friday until they turn 18.

The morning of the pants incident, Michael continued to argue with me on the drive. He would occasionally apologize and seem remorseful. Right before we turned into his school parking lot, he said, "Look, Mom, I'm really sorry. Can I have video games back today?" "No way," I told him. "You cannot act the way you acted this morning and think you can get your electronic privileges back that quickly." His face turned cold, and his eyes were full of calculated rage. "Then I'm going to kill myself," he said. "I'm going to jump out of this car right now and kill myself."

That was it. After the knife incident, I told him that if he ever said those words again, I would take him straight to the mental hospital, no ifs, ands, or buts. I did not respond, except to pull the car into the opposite lane, turning left instead of right. "Where are you taking me?" he said, suddenly worried. "Where are we going?" "You know where we are going," I replied. "No! You can't do that to me! You're sending me to hell! You're sending me straight to hell!"

I pulled up in front of the hospital, frantically waving for one of the clinicians who happened to be standing outside. "Call the police," I said. "Hurry." Michael was in a full-blown fit by then, screaming and hitting. I hugged him close so he couldn't escape from the car. He bit me several times and repeatedly jabbed his elbows into my rib cage. I'm still stronger than he is, but I won't be for much longer. The police came quickly and carried my son screaming and kicking into the bowels of the hospital. I started to shake, and tears filled my eyes as I filled out the paperwork—"Were there any difficulties with… at what age did your child… were there any problems with.. has your child ever experienced.. does your child have…"

At least we have health insurance now. I recently accepted a position with a local college, giving up my freelance career because when you have a kid like this, you need benefits. You'll do anything for benefits. No individual insurance plan will cover this kind of thing.

For days, my son insisted that I was lying—that I made the whole thing up so that I could get rid of him. The first day, when I called to check up on him, he said, "I hate you. And I'm going to get my revenge as soon as I get out of here." By day three, he was my calm, sweet boy again, all apologies and promises to get better. I've heard those promises for years. I don't believe them anymore. On the intake form, under the question, "What are your expectations for treatment?" I wrote, "I need help."

And I do. This problem is too big for me to handle on my own. Sometimes there are no good options. So you just pray for grace and trust that in hindsight, it will all make sense. I am sharing this story because I am Adam Lanza's mother. I am Dylan Klebold's and Eric Harris's mother. I am Jason Holmes's mother. I am Jared Loughner's mother. I am Seung-Hui Cho's mother. And these boys—and their mothers—need help. In the wake of another horrific national tragedy, it's easy to talk about guns. But it's time to talk about mental illness.

According to Mother Jones, since 1982, 61 mass murders involving firearms have occurred throughout the country. Of these, 43 of the killers were white males, and only one was a woman. Mother Jones focused on whether the killers obtained their guns legally (most did). But this highly visible sign of mental illness should lead us to consider how many people in the U.S. live in fear, like I do.

When I asked my son's social worker about my options, he said that the only thing I could do was to get Michael charged with a crime. "If he's back in the system, they'll create a paper trail," he said. "That's the only way you're ever going to get anything done. No one will pay attention to you unless you've got charges." I don't believe my son belongs in jail. The chaotic environment exacerbates Michael's sensitivity to sensory stimuli and doesn't deal with the underlying pathology. But it seems like the United States is using prison as the solution of choice for mentally ill people. According to Human Rights Watch, the number of mentally ill inmates in U.S. prisons quadrupled from 2000 to 2006, and it continues to rise—in fact, the rate of inmate mental illness is five times greater (56 percent) than in the non-incarcerated population.

With state-run treatment centers and hospitals shuttered, prison is now the last resort for the mentally ill—Rikers Island, the LA County Jail and Cook County Jail in Illinois housed the nation's largest treatment centers in 2011.

No one wants to send a 13-year-old genius who loves Harry Potter and his snuggle animal collection to jail. But our society, with its stigma on mental illness and its broken health care system, does not provide us with other options. Then another tortured soul shoots up a fast food restaurant. A mall. A kindergarten classroom. And we wring our hands and say, "Something must be done."

I agree that something must be done. It's time for a meaningful, nation-wide conversation about mental health. That's the only way our nation can ever truly heal. God help me. God help Michael. God help us all.

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Liza Long is an author, musician, and erstwhile classicist. she is also a single mother of four bright, loved children, one of whom has special needs.

Republished with permission from the Blue Review, a non-profit publication affiliated with Boise State University that publishes a mix of scholarly essays and journalism.

Sunday, December 16, 2012

Sunday, December 16, 2012

Tonight's picture was taken in December of 2007. We took Mattie to the US Botanical Gardens and as we were exploring the plants we came across this large hanging number. Mattie stood underneath it because it looked like long flowing hair. Naturally, being picture happy, I captured this funny moment in time. All I can say is fortunately I was picture happy throughout Mattie's journey with us, otherwise, these moments would be locked in my head and much harder to share.





Quote of the day: I have this theory that if one person can go out of their way to show compassion, then it will start a chain reaction of the same. People will never know how far a little kindness can go. ~ Rachel Joy Scott


It is interesting to me that with the CT massacre, I have had several loyal bloggers write to me to let me know that this shooting has brought up issues for them. Issues that remind them of Mattie's battle, death, and our loss. If I received one email about this, I would have dismissed it. But I have received several now, so naturally it got me to pause and reflect. Frankly, Connecticut's tragedy did not remind me of Mattie at all, mainly because the nature of the deaths were very different. Certainly there are huge similarities and at the heart of the matter I can relate to the families of all these victims. I know what it feels like to lose a child so young, to have your life turned upside down and to be left feeling completely uncertain about life, safety, and the natural order of the world. I also know the private moments of pain that aren't always written about, such as having to pass your child's room, what to do with your child's clothes and possessions, and of course the overwhelming nagging feeling that at the end of the day you were not able to keep your child safe. Because here is the newsflash..... there are things outside our control. Nothing is guaranteed, and if you lucky enough to have a healthy child, who is safe, then you have been given life's greatest gift. You need nothing else for the holidays, your gift has already been granted!

As I mentioned last night, the names of the victims were released, and though I think names are important, pictures say it all. I included this link in case you haven't seen the beautiful faces of the children and adults who lost their lives. Some of these children were looking forward to school on Friday because they were going to be decorating gingerbread houses. That joy and all the many joys that children should have growing up was taken away from them and their families by Adam Lanza.
http://abcnews.go.com/US/newtown-connecticut-school-shooting-victims/story?id=17984685#

My friend Charlie sent me the story below. I truly appreciated it and want to share it with you. We adults could learn a lot from the children in our lives. May we all strive to be agents of change and be able to think outside of ourselves to help others. If we stuck to these most basic human premises the world would be a much better place.

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What I have learned from the children in my life
By Shaheen Mistry, CEO of Teach for India and the founder of Akanksha Foundation

When I struggle to understand the world, I often remember that all I really need to learn I can learn from children. I can learn from the wonder with which they see the world, from their ability to live completely in any given moment, from the way they can both laugh and cry freely, from their unconditional love, trust and belief.

I often wonder why and how and when we lose those things that we know to be natural and right when we are children. Most of what I have learned about greed, and its opposite charity, I have learned from the children in my life. In the early days of the Akanksha Foundation, I remember organizing a party for our children at a club. There was much excitement around the games, balloons, chips and ice-cream.

I remember noticing that Parsuram, one of our five-year-olds just stood with his ice-cream, and when I asked why, he said he wanted to take it home to share it with his sister. I told him it would melt. He said that was okay. He really wanted to share it with his sister.

When my daughter Samara was eight, she was preparing for a three-legged race for her school sports day, and came home excited to tell me that her partner was her best friend Parthavi. Parthavi and Samara had been best friends for four years. My reaction was to ask Samara if it made more sense to find a partner who was closer to her height. It's hard to win, I said, if you both are such different heights. I remember my daughter's face change, and she looked at me and said, "Mama, what is more important ? Winning, or letting my best friend down?"

Earlier this year, I met Raghu. Raghu was afflicted with polio as a child, and lost the use of his legs. He shared that when he was 15 and living in a poverty-stricken rural family, he went to his parents and told them he did not want to be a burden on them and was leaving home. Raghu got onto a train with no money, landed up serving at a Gurdwara, and found his way to Ahmedabad where he now runs a significant part of an NGO working with rural women and handicrafts. Where did you get the strength, I asked. At 15? Being around Raghu you feel calm and at peace. The strength is there inside us, he replied. We just need to know it is there and to look for it.

I think about why Parsuram and Samara and Raghu chose to give and not take. Why a five-year-old wanted to share his ice-cream, why an eight year-old chose friendship over winning, why a 15-year-old chose to make a life for himself so that he wouldn't be a burden on a struggling family. All three seemed to understand what was important. All three seemed to understand that there is peace and happiness that comes from doing something for others. All three taught me a little more about our infinite capacity to think beyond ourselves.

And thinking beyond ourselves causes such important ripples. I remember stopping one hot, dusty, Mumbai afternoon to talk to a little girl on the street. She wanted money, and when I said no, she pointed to a coconut vendor across the street. I remember how she took five full minutes to choose the biggest coconut she could find, and how we sat down on the street with our coconuts as she chatted with me about six-year-old stuff. As we sat there, a man across the street watched us and then crossed over, took out an apple from his bag, and gave it to the little girl. It felt like he had always wanted to do that, but was unsure. He just needed to see someone else do it first.

Four years ago, at the Riverside school in Ahmedabad, a little project called Design for Change was born. The idea was to give children an opportunity to change something about the world that they weren't happy with. Today, children across 38 countries are designing and executing projects for change. From fighting against child marriage to negotiating with schools to lessen the weight of their schoolbags, 20 million children are thinking beyond themselves.

Last week, in Chile, I walked into a school for the poor and saw children discussing a project that they had just finished: they set up a band in a community to attract people to a space where they had collected stray puppies for adoption. I was amazed to see that desire for change had spread to children on the other side of the world. I just happened to walk into this class.

Five hundred Teach For India fellows are spread across such schools, working relentlessly to put their children on a different life path. I'm seeing increasingly how their impact is spreading. Parents are starting to think differently. Other teachers in the schools are creating new visions for education. Society is beginning to see that teaching is aspirational. And after the two-year Teach For India Fellowship, a growing force of alumni are working across sectors to end educational inequity.
 

We have an infinite capacity to give. I ask myself often how I can give more, and therefore lead by example for our children. I am reminded that Gandhiji spoke of how there is enough for our need, but not for our greed. How Sr Cyril opened up her school in Kolkata to 300 street girls, telling parents that like she teaches maths, she also teaches compassion.

I imagine a world where we think beyond ourselves, so that the world we create is kinder, more forgiving, more gentle. I wonder how we can make good our default option. I wonder what the world would look like if it was easier to give than take, easier to share than hoard, easier to be good than not. I wonder what the world would look like if we learned more from our children.