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.

========================================

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.

---

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.

 

Saturday, December 15, 2012

Saturday, December 15, 2012

Tonight's picture was taken during Christmas of 2006. We took Mattie to Massachusetts to celebrate the holidays with Peter's family that year. Behind Peter's parent's house are woods and this beautiful pond. Mattie enjoyed walking in the woods and around the pond and I loved Mattie's cute smile that was captured here!


A Special Poem: A Day Never To Be Forgotten by Nancy Heller Moskowitz

December 14, 2012, a day of sadness,
imprinted in one's mind, by a violence
Too often experienced and never understood.
How do we explain such a tragedy?
No answer, good enough to quiet the mind
Of all who witnessed and watched, in horror.

Guns, legally procured, reigning terror
On the lives of innocents.
Children believed safe and protected
Only to have a lone stranger
Disturb their thoughts and enter their dreams.
Playmates lost, teachers too,
A result of unknown anguish.
Relief that our child is spared.
Sorrow for neighbors whose tears run freely.

Death, a natural occurrence, though not here.
A mother killed, we know not why
Followed by a plan executed, the aftermath disturbing.
Grief, witnessed as townspeople gather,
In a firehouse, a church, a home, the road
As a sign of what we can't comprehend.
A town never to be the same
Another day marked by senseless loss.

Tonight's poem was written and sent to me by my friend and colleague, Nancy. Nancy has a gift of absorbing a situation, event, or loss and capturing it beautifully in poetic form. I am happy she shares this gift with me because she gives us the opportunity to feel understood in a time where not much makes sense. I do agree with Nancy, that regardless of how we look at December 14th, there is "No answer, good enough to quiet the mind." There is no explanation that suffices to explain this senseless loss of life.

I have heard that the names of the victims of this horrible massacre have been released today. I take great issue with this, mainly because it is hard enough to absorb the shock of losing a child in a traumatic way, but now this knowledge enables the media to show up on the doorsteps of these families to capture their thoughts and feelings. Not all families may feel sharing their grief publicly is helpful or acceptable and it is my hope that such pressure doesn't add more pain to an already volatile situation.

I am also saddened that there is a political spin already occurring regarding this tragedy. The discussion of gun control and legislation to prevent such school shootings perplexes me. It perplexes me on one hand and then on the other it seems to make perfect sense. It makes sense because focusing on gun control is the easier issue to contend with, it also misdirects the attention from the REAL and PAINFUL issues. Issues that are MUCH harder to resolve and/or treat (mind you I am not saying that we should all have access to guns, what I am saying is school shootings have so much more to do with other factors than access to guns)! The issues I am referring to are mental health issues. Whether we ban, limit, or control (you use whatever word you wish to insert here) the distribution of guns is really irrelevant here. If you doubt what I am saying, all you have to do is spend some time with someone who has a pervasive mental illness or with a family member who lost a loved one to suicide. If someone is determined to kill one's self and to harm others, no amount of gun control is going to help. Mainly because this will only open up the need for more creative measures/devices/strategies of destruction. The issue is not with the guns and what saddens me is that we are living in the 21st century and yet we haven't made the progress needed with regard to advocating, educating, and understanding mental illness.

I know nothing about Adam Lanza (the perpetrator of this crime), but I suspect he had some type of mental illness and his mother either had one too, or she just did not know who to turn to for help with her son. It is much harder to get mental health support when your child is an adult, and unfortunately there is still a great stigma associated with mental illness. I think putting mechanisms in place to assist and support families contending with mental health issues may be much more complex to implement but at the end of the day this would help to secure a better future for the next generation and our communities.

Peter and I ventured to Mattie's school and we visited his memorial tree. We spent a good amount of time cleaning up the tree. Unwrapping wires and other debris attached to the tree. We then began hanging the ornaments we brought with us. I took a close up of "Tow Mater," the character from the movie, Cars. You can see it hanging here, it looks like a tow truck. In addition, you can see our wind chime on the left hand side of the photo. We added the wind chime years ago, and it still blows beautifully in the wind.  

Though this is Mattie's Tree, I have nicknamed this tree, "the sparkling tree." It is hard to capture the sparkle in a photo but with all the ornaments and other goodies on it, it does twinkle! The tree has a birdhouse on it from Peter's mom (in the shape of an acorn), cellophane butterflies (I created for Mattie's birthday), a sand dollar ornament (from Mattie's good friend Campbell), butterfly and bug ornaments (from our friend Tina), red pine cone ornaments (which Peter and I put on the tree last year), and toy cars (which we put on the tree in honor of Mattie's most recent birthday).

When I arrived at school today, I immediately noticed these beautiful bird seed dipped pine cones placed on Mattie's tree. The Brownie Troop leader at Mattie's school mentioned to me that her girls may do this for the holidays, but to actually see it implemented and attached to the tree was a very special sight! It meant a lot to us. In addition to adding Tow Mater today, Peter and I also attached several sparkly snowflakes. When you see the tree in person, there is no mistake that this is a SPARKLING TREE! A tree that captures the character and personality of Mattie.

 

Later in the day, we went to visit Becca. Becca is the Executive Chef at Clyde's Restaurant in Tyson's Corner. We met Becca in 2010, and she is the generous soul who donates and cooks ALL our hot foods at the Foundation Walks. She did this in 2011, 2012, and will be returning in 2013! Becca came out of the kitchen and sat with us for 40 minutes and chatted while we were having a late lunch. Each time I meet Becca, I learn more about her, which only makes me appreciate her more and more. The Foundation is an interesting business. Unlike some businesses, everything about the Foundation is PERSONAL. If you are working with us, chances are it is because we trust, value, and respect you. It is not just about getting a job done, meeting a goal, but it is about connections and uniting together for a common cause. We consider ourselves fortunate to have Becca on our team.

 

Friday, December 14, 2012

Friday, December 14, 2012

Tonight's picture was taken in December of 2007. One of our December traditions was to visit the US Botanical Gardens. I loved going on a cold day to the Gardens because it was like walking into a hot house. It felt like Florida in the summer time, which on a cold winter day was glorious! Mattie was posed in front of a replica of the Capitol building. The beauty of this structure was it was made entirely of plant material!


Quote of the day: Life seems sometimes like nothing more than a series of losses, from beginning to end. That's the given. How you respond to those losses, what you make of what's left, that's the part you have to make up as you go. ~ Katharine Weber


I was going to elaborate on my day today, which was very full, and started with my monthly licensure board meeting. However, in light of the school massacre that occurred today in Connecticut, the tone of my message tonight is gravely different. I am sure within the next few days we will be hearing more about Adam Lanza, the 20 year old gunman who shot his mother in the head and then killed the 20 kindergartners in her classroom, as well as six educators at his mother's school. I am not sure what I could possibly hear, even as a mental health professional, about Adam's life or mental illness that would allow me to justify his actions. Murdering his mother was sinister enough, but why enter her classroom and kill innocent children? Killing a child to me is a direct message that he wanted to leave on the world, and the message was that he was in control and wanted other parents and families to suffer. To feel pain, a pain that would last a lifetime. In that sense he was very successful.

We live in a very troubling world where sending one's children to school can be dangerous. I have no doubt that these parents who sent their children to Sandy Hook Elementary School this morning never imagined how their lives would be permanently altered within minutes. When our schools aren't safe, how can learning, development, and growth occur? The answer is they can't! In the midst of this terrible tragedy, a tragedy in which I have some insight on (the loss of a child), I reflect on the courage, bravery, and heroism of the teachers. Teachers who risked their own lives to protect their young students. These  individuals are trained to educate, not to protect, and yet when chaos ensued, the safety of their students was the priority.

My thoughts are with the families who lost their children and loved ones, with the families whose children witnessed this horror, and for the community of Newtown, CT. Such a tragedy impacts not only that community, but our Nation as a whole.

Thursday, December 13, 2012

Thursday, December 13, 2012

Tonight's picture was taken in December of 2007, during our trip to Deerfield Beach, FL. For the past couple of nights I have tried to show you Mattie on the beach, but I think this photo captures how Mattie was in one with the sand. Mattie loved to build, create, and design. Mattie not only built in the sand, but once he was done, he then used things he found along the shoreline (shells, pieces of sea glass, seaweed, etc...) to decorate the creations.


Quote of the day: We bereaved are not alone. We belong to the largest company in all the world--the company of those who have known suffering. ~ Helen Keller


The Mattie Miracle Cancer Foundation is hosting a psychosocial think tank in February of 2013, in Huntington Beach, CA. We are providing stipends to 10 leaders in the psycho-oncology field to attend and to help us brainstorm and begin creating a psychological standard of care for childhood cancer patients and their families. Today I had an email exchange with one of these professionals. I actually met her once before, since she served on our professional panel during our childhood cancer psychosocial symposium on Capitol Hill in March of 2012.

What I love about this particular clinician, is she is aware of my role in the Foundation, but first and foremost she knows I am a mom of an only child who died from cancer. I did not have to say a word in the email, she is the one who actually brought it up. She wanted me to know that she imagines the holidays are very hard for Peter and I, and this is probably not a happy time of year for us. The whole email exchange was very sensitive. It wasn't wordy, but it got to the heart of the matter. It was a special feeling to know that someone immediately got it, someone I do not know well at all.

This afternoon, I went shopping. At Christmas time and around Mattie's birthday, we always decorate Mattie's memorial tree at his school. While others may be shopping for gifts for their children, I am going shopping for ornaments that go on a tree. A tree which represents the only physical symbol left of Mattie. I do not know about you, but something seems very wrong with this picture. I went to Target to find ornaments, not thinking about how congested the store's parking lot would be around lunch time. It was a nightmare of grand proportion, yet I suppose it was the tone in which I was shopping, that all the chaos around me was literally tuned out.

Peter shopped in Target with Mattie at Christmas time. They usually would bring home lights or animated creatures to add to their outdoor display. Today as I was shopping up and down the aisles of the store, I imagined the excitement Mattie must have felt as he was picking out holiday things. When I got home, I strung silver and red cord through each of the ornaments. Most of the ornaments are sparkling snowflakes, but I also picked a special one just for Mattie. I took a photo of it, it is an ornament in the shape of Tow Mater, from the movie, Cars. Mattie LOVED Cars, and as soon as I saw Mater, I knew that if Mattie were with me, he would have wanted this on his tree.  
 

Wednesday, December 12, 2012

Wednesday, December 12, 2012

Tonight's picture was taken in December of 2007, on one of the beaches in Deerfield, FL. Mattie preferred the sand over the water, and I would say Mattie had a healthy respect for the ocean. Nonetheless Mattie was fascinated by the waves and together with Peter, Mattie went to get his feet wet. From an early age Mattie seemed to understand things that could potentially hurt him, and therefore we never had to child proof things. Mattie challenged us in other ways, but if you rationalized with Mattie and explained things that were off limits and why, he got it quickly and took my word for it.


Quote of the day: When you lose someone, you get used to living day to day without them. But you’ll never get used to the “10 second heartbreak.” That’s the time it takes to wake to full consciousness each day and remember… ~ Nina Guilbeau


I found tonight's quote on the Internet and as soon as I read the "10 second heartbreak," I immediately appreciated the author's terminology. Peter and I may be used to the day to day living without Mattie, but I assure you as soon as our eyes open in the morning, we are jolted back into our reality. After all, it is not as if I am going to wake up one day and find out all of this was a bad dream. Our reality is never changing! When people tell me about their day to day issues or complaints, I must admit running in the back of my mind is the mantra..... "your problem is fixable!" Fixable problems are problems for sure, but they are a blessing. A blessing because something can be done about them. I am not saying that other issues aren't as painful or traumatic, certainly I do not corner the market on this, but death is final.

A friend sent me the below on-line article a day or so ago. I think the messages in the article are needed for this time of year. The holiday season seems to put undue pressure on people. We all strive for a Norman Rockwell holiday where everyone gets along, the table is filled with beautiful and tasty foods, and happiness abounds! But the reality of this picture is that it doesn't depict our REAL lives. It depicts our hopes and dreams of what life should or could look like. I posted the article below for you to read if interested. Yet the section entitled, "Honor your departed loved one," though designed for someone like myself did NOT resonate with me at all. The paragraph talks about how those who are bereaved tend to fear remembering their loved one during the holidays. I naturally can't relate to this notion, since remembering is all I do. DAILY!!! The tip goes on to discuss creating holiday ornaments with your children to honor those who have died. Again, not a tip relevant to me! Which points out yet again that the death of a child is NOT normal, rarely discussed, and can't even be found in tips created by an on-line grief group! Interesting!!!! 

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When the Holidays Hurt: 5 tips to help those grieving a death find moments of joy during the holidays By Chris Raymond

 

For those mourning the loss of a loved one, holiday baubles, bells and bright lights can feel anything but joyful. Here are five tips to help those grieving a death cope with the holiday season.

Unlock the Door to New Traditions

English novelist Somerset Maugham once said, "Tradition is a guide and not a jailer." Despite this, the holiday traditions we form over many years with a spouse, child, parent or other significant loved one can often feel just as inescapable as the bars of a prison. Sending out Christmas cards, baking that special holiday dessert, shopping on Black Friday, participating in the neighborhood lights/decorations contest, etc., might be interwoven with your happiest holiday memories, but will your particular tradition really bring you joy this year? If not, consider changing it so you feel more comfortable. Remember, you can always resume your original tradition down the road if you'd like, but you might discover that a new tradition is just as satisfying.

 

It's O.K. to Say N.O.

Every year, your family looks forward to coming to your house on Christmas Eve for carols and cocoa. But this year, the thought of decorating the house and trimming the tree all by yourself feels overwhelming. Or perhaps you've organized the holiday music pageant at your church or community center for the past several seasons, but now, your heart just isn't in it. While the thought of altering your holiday routine might feel difficult, you need to determine how much responsibility you feel comfortable taking on and then clearly communicate that to your family and friends. Ask yourself if you just want help with a particular task or if you'd prefer someone else take it on entirely this year. Remind yourself that it's okay to say "no" as you adjust to life after loss.

Nothing's Perfect. And Neither are You

Most of us carry a mental picture of what the holidays "should" be like. Books, magazines, movies, television commercials and even our childhood memories can fuel this idealization by creating an image of what a "perfect" Hanukah, Thanksgiving, Christmas, Kwanzaa, [insert holiday here] looks like. This can create a lot of pressure, which is another source of stress you don't need to deal with right now. Therefore, give yourself a pass this holiday season by accepting things as they are. Who cares if a few Christmas lights are burned out if the warmth of hearth and home shines brightly? Maybe you didn't spend as much time wrapping those gifts for the kids as you usually do, but when was the last time a child refused a gift because of the wrap job? Turkey a little dry this year? Add a little more gravy. Whatever comes up, repeat to yourself: "Just let it go."

Honor Your Departed Loved One

Often, those mourning a death wonder, "How can I avoid thinking about him/her during the holidays?" The truth is, you can't entirely -- so why even try? Instead of living in fear that you'll start remembering your loved one and feeling sad, empower yourself by incorporating his or her memory into your plans. When you're with your family, light a candle in your loved one's honor that can quietly signify his or her presence in your hearts. Or make some popcorn and sit down together as a family to watch his or her favorite holiday movie. If you're the creative type, make special holiday ornaments with your children or grandchildren and hang them in a place of honor on your Christmas tree. If you feel up to it, ask your family to share their favorite memories of your loved one, or visit the cemetery, memorial site or a place significant in the life of your loved one together.

Discover the True Joy of Giving

We always hear that giving is better than receiving, but how many of us really believe that? Well, consider this the holiday when you will put that old chestnut to the test by helping someone else cope with the holiday blues in some small way. Donate toys for children or warm clothing to the homeless. Help feed the hungry or support seniors. Adopt a needy family or make a charitable contribution in memory of your loved one.

 

Sources:"Tips for Handling the Holidays." www.griefnet.org.

 

Tuesday, December 11, 2012

Tuesday, December 11, 2012 -- Mattie died 170 weeks ago today.

Tonight's picture was taken in December of 2007. Mattie spent Christmas that year in Deerfield Beach, Florida. Though my parents lived in California, we all met up in Florida that year. Mattie loved Deerfield Beach. It was very family oriented and Mattie loved digging and creating. As you can see from this photo, Mattie had dug a substantial hole to set the stage for a Mattie/Peter sand design. Their sand designs were so impressive that other kids on the beach would always come over and ask whether they could play with us and help with the process.


Quote of the day: Fly me up to where you are beyond the distant star. I wish upon tonight to see you smile, if only for a while to know you're there. A breath away's not far to where you are. ~ Josh Groban


I went back to the same doctor I saw last week. There is one thing I can say about the medical profession.... when pressed for an explanation that involves thinking outside the box, the solutions are not always forthcoming. It can be a very frustrating situation when you are in pain and there isn't always a tangible explanation for the symptoms that are presenting themselves. Since I have experienced this time and time again with my bladder condition, I am very aware of the medical attitudes I sometimes need to confront. Nonetheless sometimes you just do not have the energy to argue. Yet who is going to advocate better for how you feel than you? By the time this doctor's office finished with me, I was in more pain than when I entered the office. As I sit and write this posting tonight I am wondering why I am so exhausted. However, upon reflection between balancing pain and the medical profession for the last two weeks, I am not at all surprised that I am tired.

When I got home today, I received a lovely card in the mail from my friend Denise. It is funny how a card can brighten my day! Almost a lost art, the art of handwriting and expressing one's self! I did not know Hallmark created such a greeting card, but on the front of the card it reads.... "There's no timetable for grief." I couldn't have said it better myself. It wasn't necessarily a holiday card per se, but since it was sent around the holiday season, the intention was to let me know that Denise's family was thinking of us. People do wish Peter and I a Merry Christmas all the time, and we absorb that wish, but sometimes I wish people could step back from their lives and understand what ours truly looks like. I have a feeling if they did, wishing us a Merry Christmas wouldn't be on the tip of their tongues. Which is why Denise's card brought a smile to my face. Because in essence the gift she gave me was that of understanding. Three years may have ticked by, but for us, Mattie's loss is very real and hasn't faded in time. To me it is always a beautiful gift when I feel that someone really tries to get this and understand!
 

Monday, December 10, 2012

Monday, December 10, 2012

Tonight's picture was taken in December of 2007. We took Mattie to Florida for Christmas that year and one of our adventures took us on a fan boat through part of the everglades. Mattie got to see alligators in the wild and he loved it. After we went on the fan boat ride, we walked around the property where the fan boat company was located. On display they had an older version of a fan boat. Mattie climbed right aboard the boat, and I naturally snapped a picture capturing that moment in time.





Quote of the day: We all have an old knot in the heart we wish to untie. ~ Michael Ondaatje

I have lost track of time, but I am pretty sure that right after Thanksgiving I developed a migraine and bladder issues. Weeks later, the battle continues. I started antibiotics last week, but they aren't helping. So I head back to the doctor tomorrow. I do find it interesting that post Mattie's death my physical issues center around my head and bladder. I think it is ironic because before I gave birth to Mattie, I never had a migraine or issues with my bladder. EVER! However, in labor I developed a headache that was beyond bearable. From that moment in time, I get periodic migraines and have daily chronic headaches. In fact since the day Mattie was born, April 4, 2002, I have never had a headache free day. I do not know what it feels like not to have a headache. This may sound far fetched, but 2% of the US population are like me. We are rare, but we exist, and there is NO known effective treatment for people like me. Not unlike my headache, soon after Mattie's birth, my bladder began acting up. If you have never had bladder pain, consider yourself blessed. Many doctors feel that giving birth to Mattie changed things chemically in my body. Yet my bladder condition was under control by the time Mattie was over one year of age. I could consider myself lucky that my bladder was stable for so many years. However, a month after Mattie died, havoc ensued again. Besides dealing with intense grief my bladder began to make me very sick. Now three years later, the physical issues continue. It is almost like a physical reminder that I had Mattie. Feeling ill does accomplish one thing quickly. It makes me stop, reflect, and assess how I am doing. This of course is a daunting type of assessment for a parent who lost their only child to cancer. I come from a profession where reflection is key and healthy, but I have to admit such self awareness is not always a blessing.

 

 

To my surprise, I received a gift in the mail today. It was from the Hospital for Sick Children in DC. Some of my readers may recall that in November, Peter and I presented at their palliative care conference. One of the ways they thanked us for our time was by sending me this lovely butterfly chime. The butterflies are made out of metal, they shimmer and shine, and when they move, they have the most angelic sound. The butterfly is the Hospital's symbol, but the staff was happy to hear how much I appreciate the butterfly too. When I went to the conference that day, I had a butterfly pin on my coat. The staff admired the pin, and I explained to them that I think about Mattie whenever I see a butterfly. This butterfly chime came to me wrapped in beautiful butterfly paper and with a beautiful butterfly card. For now the chime will remain inside and I will find a special home for it in our garden when spring comes.

Sunday, December 9, 2012

Sunday, December 9, 2012

Tonight's picture was taken in December of 2007. Mattie celebrated Christmas that year in Florida and one of the places we took Mattie to was Butterfly World (http://www.butterflyworld.com/). It became one of our favorite places to visit over the years. It is such a magical place filled with incredible sights of beauty. One of the places within the gardens is an aviary. In this photo you can see Mattie got a chance to feed some very special birds. These were very friendly birds. They would sit on your shoulder, back, head, or where ever they could find a comfortable perch. In the beginning Mattie was intimidated by all this flapping around, but he quickly learned that the birds were simply motivated to eat and wanted the nectar within the cup he was holding.


Quote of the day: Grief does not change you. It reveals you. ~ John Green


I showed Peter this photo tonight as I was posting it and his first response was laughter. He was laughing because Peter was the one in this tented bird area helping Mattie navigate around. Peter usually had on a back pack, and for some reason the birds were attracted to the pack. Literally Peter would be walking around and three or four birds were automatically attached to him. It was an hysterical sight. Mattie observed Peter and since Peter wasn't bothered by the birds and Mattie could see the birds weren't hurting Peter, Mattie approached the birds with greater ease. However, Peter's second response to seeing the photo was..... "it seems like yesterday."

In reality this photo was taken five years ago, but for us, it is entrenched in our minds.  As if it happened yesterday. It is hard to have snapshots of Mattie's development and yet not have Mattie with us. The only thing that reminds us that we were parents are these memories. Sometimes people ask me why or where I get the energy to write the blog. The answer is I write the blog to remember and to share Mattie's story with all of you. If I do not write, what would happen? I am not sure, but I can assure you it takes great mental capabilities to actively keep memories alive and keep them real.

I would say that tonight's quote is quite true, grief does reveal you! Before Mattie developed cancer in July of 2008, Peter and I were private people. This all changed when Mattie's blog was created. At that point, our every move was shared and reported, so that family and friends knew what was going on with Mattie's treatment and care. It was a hard transition to go from being private to very public, but I felt it was necessary in order to build up support for Mattie. Support that was crucial for his treatment and recovery. A recovery which never happened. Instead of recovery however, we were dealt the hand of Mattie's death and now grief. So though the blog wasn't designed to be a chronicle of a family's battle with bereavement, it is a natural place to turn to for support. It is amazing to think that over four years later after the blog was originally created over 200 or more people in any given day click on the blog to check on us! Amazing, the force of Mattie's life lives on in our words, thoughts, reflections, feelings, and with each click on his blog. THANK YOU for making this possible!