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!