Saturday, December 14, 2013

Saturday, December 14, 2013

Tonight's picture was taken in December of 2002. Mattie was eight months old and a ball of fire. Mattie was born on and very curious. I loved this reindeer onesie on him and he looked like the spitting image of a happy and healthy baby. It would have been absolutely impossible for us to guess what was in store for our family in 2008! You most likely can't tell, but Patches (our calico) was also in this photo. In many ways, Patches was like our "where's Waldo?" She was always on the scene. If you look passed Mattie's stroller, on the floor you can see a white tipped tail. That was my Nurse Patches! She was intrigued by Mattie and ALL his baby gear!


Quote of the day: Courage is being afraid but going on anyhow. ~ Dan Rather 

Last night Peter and I went to his office holiday party. As my faithful readers know, I really no longer like going to parties or attending group activities. Typically once I get the nerve up to go, I seem to manage, but it is taking the first step to go and attend which isn't easy for me. However, going to this particular party was not an option. I wanted to support Peter, especially when I knew other employee spouses would be there. For the most part conversations at the party were very surfacey and therefore in such circumstances I can become distracted from our reality. Everyone in Peter's office saw our Fox 5 broadcast about the Foundation's candy drive, so I got a lot of positive feedback about that. As the evening moved along, I decided to finally sit down after standing for several hours. While sitting, I saw a young man approach me. At first I was uncertain who this was, but as I looked at his face, I knew this was Tyler. Tyler is a young adult now and he is the brother of Charlotte. As a recap, Charlotte and Mattie went to kindergarten together and Mattie deemed her "his girlfriend." Actually Mattie gave Charlotte an engagement ring (a plastic ring he got from a good dental cleaning) while in kindergarten. I am not sure what inspired Mattie to do this, but in some ways, I think Mattie knew he had to pack a lot in during his short lifetime.

Any case, when I met Tyler years ago, he was in high school. Now he is a college graduate. Which is why at first I did not recognize him all dressed up and with a tie. Tyler was attending an office party at the same restaurant as us and while walking down the hallway, he spotted me. Tyler came over and gave me a big hug. To put this in context, when Mattie was battling cancer, Tyler coordinated and hosted a "battle of the bands" concert as a fundraiser for Mattie. He did this as a teenager, and the event was super successful. All I can say is seeing Tyler transported me right back in time. A time in which his sister and his family were in our lives on a regular basis, and of course a time when Mattie was alive.   

Also while at Peter's office party, Peter and I received a text message from our friend Tanja. Tanja was at Mattie's school last night attending a choir concert with her daughter. While Tanja observed the 6th grade performing, she said she got VERY upset and something came over her. At first I did not understand what she was getting at, because remember in my mind Mattie will always be 6 years old and in kindergarten. But if Mattie were alive today, he would be in 6th grade. When Tanja saw the 6th grade perform she felt something and more importantly someone was missing! Our Mattie! Receiving Tanja's message meant a great deal to me. What her message was telling me is that she remembers Mattie, misses his presence, and isn't afraid to tell me. She then thanked me for sharing my grief journey with others and allowing people inside to understand the true emotions behind losing a child. I view this text message exchange as a beautiful holiday gift. 

Today Peter and I visited Mattie's lower school campus. On that campus is Mattie's memorial tree. As many of you know, I deem this tree the twinkling tree. It twinkles because on it is a birdhouse, a wind chime, hot wheel cars, butterfly ornaments, and Legos. These things adorn Mattie's Tree on a regular basis. We added a beautiful red bow around the tree and snowflake ornaments in honor of Christmas 2013. 

A close up of the red bow and one of the butterfly ornaments! 

I tried to capture all the items on the tree in this photo. Despite the rain, we were out there decorating and cleaning up around the tree. We might not have a Christmas tree at home, but Mattie's tree gives us the opportunity to get outside and acknowledge the holiday as a family. 

Friday, December 13, 2013

Friday, December 13, 2013

Tonight's picture was taken in December of 2002. Mattie was eight months old and as you can see was NOT interested in crawling. Mattie wanted desperately to walk. He actually had a great deal of leg strength and if I held his hands, he could walk anywhere. This occurred early on in his development. Maybe as early as four months. What I love about this photo was the cute reindeer on Mattie's onesie! He was our walking reindeer that year.


Quote of the day: Courage is what it takes to stand up and speak; courage is also what it takes to sit down and listen. ~  Winston Churchill


I absolutely LOVE Churchill's quote. We tend to associate courage with standing up and advocating, which of course it is, but courage is MUCH MUCH more than that. To listen to someone, especially someone who is grieving takes enormous courage and strength. It also takes time, patience, and a great deal of love. If I had to list the one absolute MUST for a grieving parent for survival, I would say it is the need to be heard. Today I was reminded about this once again from both of my friends in cancer. My friend Ilona lost her son in June and Annie lost  her daughter in May of 2010. Obviously both women are in different places along the grief continuum, yet I understand exactly what they are both saying. In fact, it is sometimes hard for others not going through what we are facing to truly get the picture of what stands before us, especially on the holidays.

As I read my friend Annie's blog today, she wrote about Christmas cards. It is an issue I face each December, but I doubt I have written much about it on Mattie's blog. Like Annie, Peter and I used to send out HUNDREDS of Christmas cards every December. We did this as a married couple and then when Mattie came along, we featured Mattie on the front cover of every card. Mattie was diagnosed with cancer in 2008, and therefore the last time we sent out cards was in December of 2007. To this day, Peter and I still do not send out personal holiday cards. We send out a holiday greeting on behalf of the Mattie Miracle Cancer Foundation, to our supporters to highlight our year's accomplishments and our appreciation for their contributions. But in my heart of hearts, I can't send out personal cards. I am neither interested nor have the desire. With that said, what about receiving holiday cards?!

When Mattie was alive we received as many cards as we sent out. Did I like receiving cards? Most definitely. I love cards because to me they show the creative side of people and I can tell a lot about a person based on what is written or not written in a card. Soon after Mattie died, people continued to send us cards. All sorts, but mostly cards filled with family photos, photos of their children, and updates about the wonderful happenings in their lives. I have to admit such cards were hard to receive and perhaps on some level they remain hard to receive. Yet now four years into this journey, I have noticed with each year, we receive fewer and fewer cards. I am not sure if this is an indication of being forgotten or people are just unsure of what to do with us. Nonetheless, we have feelings and it is painful not to be included in some way, and this further reminds me just how disconnected a bereaved parent is from the rest of the world. What works? I have a friend who sends me a holiday card each year, but it isn't one she sends to everyone else, it is a card just for me. Acknowledging the pain of the holiday season but also with the reflection that my presence is important in her life and that of others. I will never forget the first year receiving such a card! To me it was brilliant and really what every grieving parent needs...... to be remembered and not forgotten. What such a card illustrates to me is that my friend has what Churchill stated.............. COURAGE!!!!

Thursday, December 12, 2013

Thursday, December 12, 2013

Tonight's picture was taken in December of 2003. We took Mattie to Los Angeles that Christmas and my mom set up a tree just for Mattie. A tree that was his size. As you can see, Mattie had a great old time tearing through gift wrapping to get at his presents. I think as parents of a healthy child we took this simple act of opening up gifts for granted. Thinking we would have many more Christmases like this. Now looking back at this, I realize how special these moments were and I am glad I captured them somehow for years to come.


Quote of the day: What mattered was still there. That was what they all felt, and what surprised them all. What mattered couldn't be shaken. ~ Jodi Lynn Anderson

The lady on the right, sitting with the red pillow behind her is my friend Mary. I had the opportunity to see Mary and attend her 85th birthday luncheon today. Mary's birthday is significant to me because I met Mary five years ago on her birthday! It is ironic, Mary and I have only known each other for a short period of time and yet within these five years so many losses have occurred.


Mattie died on September 8th of 2009 and Mary's husband died about a month later, on October 5th of 2009. I will never forget this whole time period for many reasons. Caring for Mattie through his cancer battle was incredibly intense. We lived in the hospital for over a year and rarely slept. It is actually hard to imagine functioning without sleep, but  I am living proof that the body can get used to such abusive treatment long term. It has it consequences of course, but we managed to adjust in order to help Mattie. After Mattie died, Ann's dad (or Mary's husband) was taking a turn for the worse. Because Ann (who was our team Mattie coordinator when Mattie was battling cancer) was so instrumental in helping Peter and me, it was a natural fit to help Ann while her dad was dying. Allowing someone into your life to help deal with a family member's terminal illness takes courage and quite frankly it is a very intimate experience. Since I was unable to sleep and was used to working with medical issues by that point, helping Ann's dad die was a skill I had and could apply to help my friend.

I know when Peter and I present on palliative care panels, people are amazed to hear what we did as soon as Mattie died. Because what we did was we moved into Ann's house to help her balance her children and her dying father. This may sound like an unusual thing to do, and most likely Peter and I needed different things at that time. But what I needed right after Mattie died was to be needed and to care for someone. Losing Mattie was so traumatic and my body was so conditioned to being hyper alert in the hospital that I really couldn't function in our regular society. I needed another medical care setting to turn to and this is where Ann's father came in. I sometimes wonder what my life would have looked like without having moved into Ann's house two weeks after Mattie died, without having cared for Mary's husband in his nursing home, and then trying to help Mary after her husband died?

I do not have answers to any of these questions, but I tell you this story because I think it puts into context my deep connection with Mary. She isn't just my friend's mom. Mary and I went through many challenges together and back when she was verbal (something I miss now given her neurological disease), we also talked about what it was like for both of us to lose our sons to cancer. Post deaths, we spent a great deal of time together, and for me this wasn't just a task to pass the time. Spending time with my friend and her family was my way of trying to reinvest in the living world. With that being said, my decision to help did impact my grieving process then and now into the future.

Another highlight of the day was I learned how to make a scarf using yarn and a crochet needle. Ann's aunt, who is also my friend, is visiting from Massachusetts. She surprised me with a hand made gift and then showed me the technique she uses to make these beautiful scarves. The funny part about this is Helen wasn't sure anyone would like her scarves. But the scarves are delicate, feminine, and eye catching. This was my first time using a crochet needle and I found the whole project fun, but then again I like crafting things. Another lesson I learned about myself after Mattie died. When Mattie was alive, I probably did some creative things, but it wasn't until Mattie died that crafting took on a whole new level. I remember the first Christmas we spent without Mattie, I was designing candy cane trees for Ann. Needless to say she has many of my candy tree creations, but I needed an outlet. Which is why even today AC Moore maybe one of my favorite places to visit during difficult moments.
 

Wednesday, December 11, 2013

Wednesday, December 11, 2013

Tonight's picture was taken in December of 2003. We took Mattie out to California that holiday season to visit my parents. In the backyard were orange, lemon, and grapefruit trees. Mattie joined me as I picked the fruits off the trees. However as you can see Mattie was absolutely fascinated by the fruit. To him they looked like colored balls. In addition to examining each piece, Mattie also tried sorting them by color and shape. 


Quote of the day: Our attitudes control our lives. Attitudes are a secret power working twenty-four hours a day, for good or bad. It is of paramount importance that we know how to harness and control this great force. ~ Tom Blandi

Our attitudes can really make us or break us on all sorts of issues. Since Mattie's blog focuses on our grief journey since his death, it is grief attitudes that I am particularly interested in here. How a parent copes with a child's death is very attitude driven. Like all attitudes they can wax and wane. Some days  our attitude and outlook are better than others, and then there are time periods in the sea of grief, when things seem bleak and those around us exacerbate our negativity. I find going through the loss of Mattie has given me great insights and from them I know what helps me and what sets me off. In fact, I feel these insights could help and support other parents who also lost a child. 

With that said, I wish I did not have to lose Mattie to gain such knowledge. But it is indeed knowledge that unfortunately not everyone possesses. I wish that others simply understood what I needed or would be sensitive to wanting to find out. With an emphasis of FINDING OUT!!! But I guess without the direct pain and insights of living a grieving parent's nightmare 24/7, it is hard to know what to do, say, or how to help. I think the key though is NOT to assume you know how a grieving parent feels and to give this person the opportunity to share feelings, yes even after the first year of grieving! Our society has some sort of sick association with the first anniversary of a child's death. In that after the first year, magic takes over and everything returns to equilibrium. However, that is incorrect and things certainly never return to the way they were.

Today I had the opportunity to have lunch with my friend Tina. Tina and I are both foodies and we love trying news things, sharing foods, and discussing them. After lunch I went back to Tina's house and got to see her Christmas tree and its beautiful and sentimental decorations. Like me, Tina gives great thought to how her tree is decorated. Each ornament has significance to her children, family, and  the times they spent together. It was like a living visual history of her family. In my perspective it was stunning. We chatted about the tree, memories with the ornaments, and of course with each ornament I learned more about my friend. It was a lovely interchange. After we talked Tina then asked me if I decorate for Christmas, guessing that I probably didn't anymore. Somehow addressing this topic of decorating made me very sad and made me cry. Though this is a sad commentary, what I appreciated was being asked and also being understood for how difficult a time of year this is. Most of the times, I am surrounded by moms who are talking about the holidays, what they are doing with their children, presents, and the list goes on. How does a grieving parent process all of this? Not well without having friends who want to listen and process this. Again it comes down to attitudes. Some days it is easier to manage this than others, but at the core, for parents who lost a child, especially an only child, it is hard not to become bitter, jealous, and angered over how life has been transformed against our will. A transformation that can't be fully appreciated (thankfully!!!!) without going through it.   

Peter returned from Boston last night. To my surprise he handed me a package. Peter's mom baked all sorts of holiday cookies and gave me my own tin. As I told her, this was the best gift she could have given me. I took a photo of the gingerbread people. Notice that one person is already missing an arm. It was consumed, not missing! Peter's mom uses an orange oil when she bakes these cookies and they are fantastic! Mattie loved gingerbread cookies and I remember using Barbara's recipe for several years both when Mattie was in preschool and in kindergarten to design gingerbread houses and gingerbread men. I can't help but think of Mattie whenever I see gingerbread.  
 

Tuesday, December 10, 2013

Tuesday, December 10, 2013 -- Mattie died 221 weeks ago today.

Tonight's picture was taken in December of 2002. I just love it! The innocent curiosity of looking at the snow. In fact, if Mattie were alive today, he most definitely would be doing the same thing. The front door would be open and he would be checking out the snow. More likely he wouldn't only be watching he would be in the snow, but you get the point. Mattie lived in his "tot wheels" back then. Though Mattie was a late walker, he gravitated to this tot wheels because it gave him instant mobility. Not only did he get around, he flew around on this thing. I still can't get over how he maneuvered through corners and tight turns. But Mattie did it with ease. Mattie never crawled and learning to walk also wasn't of interest to him. I think what he wanted to do was run, and by the time he learned to walk, he was moving around like the wind.


Quote of the day: Don't be afraid your life will end; be afraid that it will never begin. ~ Grace Hansen


I sometimes wonder who predicts the weather in Washington, DC. Schools were closed and so was the government. The city came to a grinding halt due to the snow storm. Except there was one big problem with all of this!!! Where was the snow???? In Washington, DC we received about a half of an inch and keep in mind that it was close to 40 degrees. To top it off by 2pm, the sun came out. I really wonder about this town and the level of panic that ensues with these predicted storms. It almost paralyzes you! I grew up in New York and went to college in upstate New York, which gets a ton of snow. Somehow the north east manages snow much better than us in the mid-Atlantic region. The unfortunate part about all of this is two things. I learned to drive in Southern California. So I do not have the foggiest notion how to drive in the snow. Therefore a report of snow, does catch my attention. The second issue is that I fall victim to this DC weather insanity. So much so that I will convince myself that I shouldn't drive a car and chance it.

However, logic and reasoning took over today and when I saw the snow was stopping, read the weather updates, and saw the roads, I decided to venture out! One of the things I did today was help my friend wrap holiday presents. I have done this since 2009, the year Mattie died. It is almost like a tradition, as odd as that sounds. While at her house, I had the chance to chat with her in-laws who are staying with her. My friend's father-in-law and my mom have one very specific thing in common and that is Dewitt Clinton High School in New York. My friend's father-in-law went there as a student and my mom taught mathematics there for many years. Unlike myself, my mom is gifted in math, and apparently so much so that she inspired my lifetime friend, Karen to become a math teacher.

But here is the interesting thing. My friend's father-in-law mentioned that he loved his math teacher. As a kid I heard every practical story about the math department from my mom so I decided to ask him who his teacher was and he told me..... Mrs. Gildenberg! I knew exactly who this was! Because Mrs. Gildenberg was Emily to me. Emily was significantly older than my mom, but she was my mom's math mentor and also one of her closest friends. I spent many, many holidays with Emily, her husband, and her sister. She was a part of our family. I did not have the heart to tell her devoted student that she suffered a painful death with a cancerous blood disease. I know this because my mom was literally with her until the end. Though my mom and I don't talk about Emily now, I remember as a teenager that her death caused my mom great pain.

It seems amazing today to be talking about Emily. Here was a person before me that knew NOT Emily the person, but Emily the educator. My mom used to tell me how gifted Emily was, but to hear it from a former student was powerful. This is the beauty I think of being a teacher. Unlike any other profession. You have NO idea what minds and hearts you influence and change. Emily may be gone, but her memory, her skills, and her presence continues to live on in her students. Teaching someone a skill has got to be one of the greatest gifts we can give another person. 

Switching gears, today I received the link below from the American Psychosocial Oncology Society (APOS). APOS is the national organization the Foundation became connected with this year. In February 2014, we will be hosting our second think tank at their conference. APOS gave us the opportunity to let their membership learn more about Mattie Miracle and our continued connections.  

http://cmg-apos.informz.net/admin31/content/template.asp?sid=35177&ptid=952&brandid=4352&uid=1020251434&mi=3677081&ps=35177

Monday, December 9, 2013

Monday, December 9, 2013

Tonight's picture was taken in December of 2003. Peter snapped a photo of Mattie and me on a flight to Los Angeles. Mattie was a year and a half at that time and was a bundle of energy. I had a whole bag of tricks with me because Mattie was FULLY ON for a five hour flight. No napping! We did everything from Legos, puzzles, books, and hot wheel cars together! Unlike myself, Mattie loved to fly and found traveling a big adventure.

Quote of the day: Plan out your life on paper but live your life by your heart. ~ Warren Demike


Peter flew to Boston yesterday. His flight wasn't cancelled and thankfully made it there safely. Of course there is no telling whether he will get back tomorrow given the predicted snow up and down the Eastern seaboard. Certainly in Peter's career history he has had to do a lot of traveling. He went on trips before I had Mattie, in fact at one point in our marriage Peter worked Monday through Thursday in Tampa, FL. We only saw each other three days a week, and this went on for at least a year. When Mattie was born, Peter also traveled, and not to places around the corner. Try Africa and Bangladesh on for size. While Peter was working, I was pursuing various degrees, working, writing a dissertation, and then of course raising Mattie. We are used to being busy and we are also used to being apart at times. Typically this isn't a problem. However, with the death of Mattie, the separation from each other is quite a bit harder. Our home is quiet now without Mattie and Patches. But when only one of us is living in it, it takes on a whole different life of its own.  

As a child, I can recall having a very busy home. With many family and friends always visiting. There just seemed to be a lot of gatherings. Peter's home in Boston was exactly the same. We grew up in homes that were hubs. I think it was my expectation as I grew up and became an adult that our home would be like what we experienced growing up. Unfortunately that isn't the case, and in fact it is the exact opposite. I think several things account for this. First and foremost, our society is SO BUSY! I think gathering at home are not as popular as it was years ago, but I also think that with Mattie's death, our ability to socialize has changed. It is a mutual discomfort in many ways. We do not always want to socialize and others do not necessarily want to socialize with us either. This is a hard reality to face and lately I have been looking within and coming to the conclusion that I need different social outlets.

As tonight's quote implies, I spent most of the day following my plan on paper. My plan was to work on Foundation items like our December newsletter. But by 2pm, I had it. I was getting stir crazy glued to my computer. So when the going gets tough, the tough go shopping. All kinds of shopping from groceries to crafts.  

Sunday, December 8, 2013

Sunday, December 8, 2013

Tonight's picture was taken in December of 2007. We took Mattie to the US Botanic Gardens. Mattie posed in front of a wonderful model of the US Capitol. This model was comprised of plant materials. It truly is a work of art. During the holiday season the Gardens have a wonderful display of holiday flowers, miniature dc monuments, and toy trains. We tried to take Mattie to the Gardens each December. It is a display that is noteworthy and transports you to another place and time.

Quote of the day: The best things in life are nearest: Breath in your nostrils, light in your eyes, flowers at your feet, duties at your hand, the path of right just before you. Then do not grasp at the stars, but do life's plain, common work as it comes, certain that daily duties and daily bread are the sweetest things in life. ~ Robert Louis Stevenson

The Compassionate Friends Worldwide Candle Lighting Day is today! It is designed to unite family and friends around the globe in lighting candles for one hour in the memory of children who died. As candles are lit at 7:00 p.m., hundreds of thousands of people commemorate and honor the memory of children gone too soon. At 7pm, I lit a red colored candle in honor of Mattie.

Last night, Peter and I went to the US Botanic Gardens with our friends in cancer, Ilona and Attila. Our friends have created a scholarship for DC students at the Gardens in honor of their son. A place their son loved to visit. As a thank you for their scholarship, our friends were invited to this private gathering. To see the Gardens at night is a very special sight. A first for me!During the holiday season the Gardens are decorated beautifully and typically when you visit them, they are packed with people. Having a private viewing of the Gardens was super special. I would say around 100 people were in attendance and also featured was wine and amazing cookies. Actually they lost me at the cookie table for several minutes. There is nothing like a home made cookie! I no longer have an excuse to bake cookies and I really don't go to holiday parties, so the likelihood of getting fresh baked holiday cookies is LOW. So last night was a treat and I had the opportunity to meet two other sweet tooth's at the table and we had fun comparing tastes and reactions to what we were sampling.

Our friends took a photo of Peter and me in front of the Capitol model. The same model that Mattie stood in front of in 2007 (above). Mattie is gone but the model still exists and comes out each holiday season.

This is a stunning representation of the US Supreme Court building. Each model is an unique masterpiece constructed on a frame of acrylic based foam. Casting resin is poured into the window cutouts, wall surfaces are finished with sand based grout and distinctive architectural details are fashioned from dried plant materials. For example, creating the US Capitol building model took over 600 hours to assemble.

There are several rooms within the Gardens, but the big open space in the center is filled with palms and luscious trees from around the world. In addition to these glorious trees, the glass roof was lit up with all sorts of colored lights. The lights reflected down on the trees. I think it would be impossible, even for the hard hearted, to visit these gardens and not feel moved by the holiday season. In fact, this was our first time back to the Gardens since Mattie was diagnosed with cancer. We haven't returned to this building for over five years. Somehow as I walked around, I imagined Mattie in each of the rooms we entered.

If the trees and models weren't enough, they also have a themed room. This year's theme was the World Fair. Models of all the famous world's fair structures were surrounding us and in and amongst these wonderful plant models were toy trains chugging away. Peter caught Percy, the green Thomas themed train, coming around the track. Kids were in awe of the trains and very excited. Many parents were running around after children and I simply laughed. I laughed because that is how I remember the gardens. I don't remember really slowing down and seeing the details like I saw yesterday.

This is what I call an amazing tree! It is HUGE but in addition to that, it is SO fragrant. I miss our home smelling like a pine tree during the holidays. But there was no mistaking this fragrance last night, it was intoxicating and I smelled it as soon as I walked into the Gardens!

My friend really wanted to give us an opportunity to experience the holiday season in our own way, and I would have to say this definitely accomplished that goal. It was a spectacular, twinkling, and festive evening in and amongst the greenery. The focus was on the beauty, and I think that is why it worked so well for me.