Saturday, January 25, 2014

Saturday, January 25, 2014

Tonight's picture was taken in December of 2007. I call this photo..... Mattie's eclectic look! You will notice he was wearing two shoes. One of which was his own and the other was Peter's, not to mention the two hats, sunglasses (in December), and his duck whistle. Mattie walked all around our home like this on that particular day, and it seemed noteworthy to me. Or noteworthy enough to take a photo. I really do not know what I would have done if Mattie had been alive before the age of digital photography. I would have a lot less photos and it would have been impossible to organize them and share them like I do. 


Quote of the day: Deprived of meaningful work, men and women lose their reason for existence; they go stark, raving mad. ~ Fyodor Dostoevsky

I have been working intensely this week and basically had trouble getting it together today. Even after sleeping the entire night, after breakfast I fell asleep on the couch. Not being a napper at all, this was unusual for me. But Peter encouraged us to get moving and out today. It is frigid here, so the notion of going anywhere isn't truly appealing. The highlight of my week at home has been watching the birds. Our packs of sparrows have returned! I learned today that sparrows can live up to 20 years or so, so I really have no doubt that we have many return customers to our feeders year after year. It always amazes me how they know to come back to our deck! I am not sure what I love more, seeing the birds or hearing them. I absolutely love hearing them chirp and communicate with one another, not to mention observing their pecking order on the feeders is hilarious. All I know is it is great entertainment during the winter and in a way it makes me feel connected to nature and the outside world. Check out the sparrow who literally is clinging to the brick wall above the feeder. That to me this looks like a feat. 

Peter and I went out today to run chores and somehow while out, I saw several children walking with their parents. Many days I can put this into context, and not apply that context to my own life. However, on days when I am tired or stressed out, I become more vulnerable. Meaning that I can look at other parents with their children and really feel CONFUSED. I am confused because I do not understand why we do not have Mattie by our side. This mind game can actually throw you for a loop. Rationally I know Mattie has died and isn't with us, but there is a level of simple chaos inside my head. Why did Mattie die? Was I ever a mom? Why can't I remember those days as clearly? All I feel and live with now is days without Mattie..... the grieving days. It is quite hard to have a child and then not have a child, and no amount of logic and reasoning seems to straighten this out for me. 

Another bright spot in our home right now is our amaryllis. Peter got me an amaryllis for Christmas of 2012. This plant blooms only around the holidays and then the flowers die off for the rest of the year. But it is a bulb and therefore like all bulbs it shoots up at a particular time of year. This is the second year our plant has bloomed for us and it is so stunning. I wish it would last forever. In the midst of the cold and grayness it is a beacon of life, color, and hope. This flower is not unlike a griever. In which a part of it dies each year, but if nurtured by the environment and exposed to the right kind of care, something ignites from within and blossoms. May all of us grieving find the right setting and environment EACH YEAR to heal, be nurtured, understood, and inspired so that we may re-engage with the world around us. 

Friday, January 24, 2014

Friday, January 24, 2014

Tonight's picture was taken in January of 2006. This has to be one of my favorite photos of Mattie. I caught him while in the tub, soap all over himself, and in his element of playing with water. When there are days I get down and am exhausted from Foundation work, I turn to my Mattie wall of memories (canvas photos of Mattie now in his room), and this pushes me forward to continue on. "On" can mean many things, but it does give me a will and purpose for living. Because I know without doing what I do, there is no Mattie Miracle Cancer Foundation.  

Quote of the day: As for accomplishments, I just did what I had to do as things came along. ~ Eleanor Roosevelt

I think Peter and I relate to Eleanor Roosevelt's quote, especially when it comes to Foundation achievements and accomplishments. We do what we have to do and address needs and issues as they come along to us. Okay, well perhaps that is an over simplification of what we do, but in a nutshell, neither of us set a Foundation goal so that we can be recognized and given kudos. Which is why when I received a phone call from Tim (our friend and Georgetown University Hospital administer), that we were nominated and selected to be the Hospital's Flame of Hope recipient this year, I was STUNNED. Part of me is still stunned. 

I must admit when Tim told me about this honor, I had no idea what he was talking about. I did not know what the Flame of Hope award was and I also thought the gala for the Hospital had already past. See where I am at! Needless to say this award is given at the Hospital's gala in March. The mission of the gala is the following:

Georgetown University and Medstar Georgetown University Hospital recognize that a key mission of an academic medical center is to provide personalized medical care of the highest quality combined with state-of-the-art medical technology. Our programs provide the most advanced treatments, but do so in the context of “cura personalis” – care for the whole person. The proceeds from the Fifteenth Annual Georgetown Pediatrics Gala will support research programs in General Pediatrics and Adolescent Medicine at MedStar Georgetown University Hospital (MGUH) and Georgetown University Medical Center. In addition, the 2014 Gala proceeds will be used for clinical, teaching and community pediatric programs that support children and families served at MGUH in the Department of Pediatrics.

What I did not know was the history of the gala and why it was created in the first place. The gala started in 2000, after Mary Hoobler lost her husband at Georgetown University Hospital. Her husband, Jim, developed a post-surgical breathing disorder in which he had to be admitted to the pediatric intensive care unit, because it was there that a specialize treatment (Extra Corporeal Membrane Oxygenation) was available. After exploring many options to honor Jim and to somehow repay the pediatricians and nurses who cared for her husband with extraordinary compassion and tremendous dignity, Mary founded the Georgetown Pediatrics Gala. In her own words, Mary “decided the best way I could repay these exceptional professionals and celebrate the excellence that lives at Georgetown, was to raise funds for Georgetown’s critically important clinical and community pediatrics programs.”

  

I had the opportunity to have an email exchange with Mary today and I told her that I am inspired with individuals like herself who experience a great loss and yet find a way to channel that grief to help countless others. Needless to say Peter and I are very honored to receive this award and I was deeply touched when Tim and Dr. Aziza Shad (the director of the pediatric oncology program at Georgetown and one of Mattie's doctors, actually the doctor who helped Mattie die) told me today that Mattie Miracle is not only a local foundation it is a national organization and is accomplishing things that are noteworthy, important, and help countless children and families.  

As I absorb all this excitement today, and naturally always pause to ask myself..... I wonder what Mattie would say about this?!!! If you would like to learn more about the Flame of Hope Award, I attached two links below. Past recipients have been people like Laura Bush and Tipper Gore. Certainly I do the work for Mattie Miracle daily, but without our countless supporters, nothing could ever be achieved. So when we accept this award in March, please know that we accept it with all of you in mind. 

http://pediatricsgala.georgetown.edu/Fact%20Sheet

http://pediatricsgala.georgetown.edu/flameaward/

Thursday, January 23, 2014

Thursday, January 23, 2014

Tonight's picture was taken in January of 2006. In a way this photo is a follow up to the one I highlighted last night. Mattie got to take the gingerbread houses that his preschool classroom decorated that day! As you can see the children covered the house in royal icing and all sorts of candy. In so many ways raising Mattie gave me the chance to be a child again. Mattie was thrilled with the finished products and though eating this wouldn't have interested him in the least, he did consider them works of art that he wanted to admire and be proud of. 




Quote of the day: There are always flowers for those who want to see them. ~ Henri Matisse


I went to see my friend Mary today who lives in an assisted living facility. I have known Mary for five years now, and we met each other while Mattie was battling cancer. Since her son also battled cancer and died, we have that commonality. What a commonality it is! Some people share a neighborhood, a favorite ice cream, a political party, a religious ideology, etc. But a bond over cancer seems to level the playing field and though Mary and I are different people and certainly a different generation, we always have had great compassion for one another. It has been hard seeing my friend drift away due to her neurological disease.Mary is no longer able to communicate, yet I know she is alert and is taking in everything that is being said. 

When I arrived today, Mary seemed tired and out of sorts, but Mary is the classic example of what Henri Matisse was talking about in his quote. Living with a neurological disorder is like hell on earth in many ways. It leaves you unable to walk, move, do any basic activities for one's self, talk, and last but not least comes the inability to eat and breathe. Despite Mary's grave circumstances, somehow listening to me talking today to her and her caregiver perked her up. I try to imagine myself in Mary's shoes and frankly I wouldn't be doing as well as her. Yet on some level Mary appreciates what she has, which is a daughter who visits her daily, a caregiver by her side, and on occasion she takes delight in hearing a conversation. These are her flowers in life. 

One of the topics of conversation today was food. Trying to find foods that Mary can eat and swallow. Food is one of my favorite topics, mainly because I love to eat. The more I was talking about food, the more I saw Mary eating in front of me. It just points out that eating is truly a social thing and how we as human beings respond to each other. In this particular way, Mary and I share the same flowers. Our flowers are people! People have a way of certainly bringing us pain, but in those we trust and love, they can bring us great happiness and joy. Happiness even when there isn't much to be happy about it.

I learned that lesson deeply when Mattie was battling cancer. Our network of friends and our different communities came out of the wood work to help us. Some days in the hospital I did not know if I was coming or going, but knowing that there were others out there thinking of us and standing behind us made all the difference in the world. May we all find our own flowers to cling to during life's challenges. Because in all reality they are the only thing that can carry us through.

Wednesday, January 22, 2014

Wednesday, January 22, 2014

Tonight's picture was taken in January of 2006. That particular day I brought gingerbread houses that I made from scratch to Mattie's preschool class. I wanted to give Mattie's class a fun activity and I spoke to Margaret, Mattie's teacher about this. Margaret encouraged me to take on this project and even introduced me to her gingerbread house baking mold. For years to come, I borrowed Margaret's baking mold to make many many more houses for Mattie and friends. Margaret introduced a whole world to us. Mattie and his friends were THRILLED that day and I am so happy to have these memories. The kids did not realize at first that the stuff in the cups (to help stick candies onto the house) was royal icing (which is edible). They thought it was glue, until one of them tasted it! I am not sure what was more of a hit that day...... the candy, the house decorating, or the licking of fingers covered in royal icing!!!

Quote of the day:............maybe I would want to wrap my arms around a project that might help me make some sense of his loss, that might live on to make a difference for others. I don't know. Truthfully only you can know your limits. ~ Judy (Melissa's mom)

  
I received two meaningful emails today from friends. The first email supplied me with the quote above. The quote is written by a mom who lost her daughter to an eating disorder. Yet despite why our children died, the overall outcome is the same for us. We have the need to make sense out of the loss. It almost becomes one's life mission. Like this mom, I too have had to wrap my arms, hands, and fingers around a project for my sanity. In this case, for the past several days the project has been our Foundation's work on a national psychosocial standard of care. I practically haven't left the computer for three days now. Like Melissa's mom, a part of me does this kind of work to make a difference in the lives of others, but at the core my motivation is always to carry on Mattie's legacy and by creating such a standard this will achieve my goal in a very meaningful way. 

The second email I received was a link to an article entitled, The Closure Debate. Within the article is also a 17 minute video. I have mixed feelings about the video, but overall the concept this clinician was trying to illustrate was well demonstrated. Her premise is that our society has created the notion of closure to make us all feel better especially when it comes to a loss of any kind. But in essence she feels closure actually doesn't make the griever feel better at all. In fact, it is almost counterproductive. Any one who has experienced a significant loss is aware of the fact that the notion of closure is ridiculous. As if a point in time will occur when we are able to snap out of our grief and compartmentalize our feelings about the loss. Which would mean in my case that I would have to acknowledge that there was a time in which Mattie was in my life, but now he has died and I have to accept this. I would have to place those thoughts and feelings somewhere, and move on. Move on so that I can rejoin the world of the living, of the happy, and the joyful. After all, are society is filled with happiness seekers. If you aren't part of the happy crowd, something has to be wrong with you. NOT AT ALL and MOST DEFINITELY WRONG! 

When you ask a parent who lost a child to seek closure over the loss you will only create intense CONFLICT and guilt. Experiencing joy again and seeking closure means that Mattie is not part of my life anymore. Something that I refuse to accept, which is why I ultimately write the blog each day. It helps me remember and I also get to share him with all of you. 

This clinician's feels that to ultimately heal one needs to learn to balance joy and grief together. They are not on separate ends of a person's continuum, instead they are interwoven into one's daily life. Brilliant and so true. I can certainly have moments of joy, but they are always tempered with Mattie's memory. Mind you she interviewed people who lost someone significant 20 years ago, and they are speaking the same language as me today. In a way this makes me feel that I am NOT alone, that there are others out there, in which closure doesn't work for them either. Not only doesn't it work but it only further acerbates the issues. I also LOVED how this clinician suggests to friends and family to meet the grieving person where they are, not where you want them to be. Presenting all sorts of options, ideas, and ways to MOVE ON won't work. I remember early on friends presented me with all sorts of options. I mean ALL sorts! I know now this band-aid approach was for them and not for me, because they felt helpless and not unsure what to do. At the end of the day, the key to helping someone with grief is not necessarily to make them feel better, not to distract and help to forget the pain, but to listen, to remember, and to accept that joy and grief go hand in hand.   

http://peacethroughgrief.com/the-closure-debate

Tuesday, January 21, 2014

Tuesday, January 21, 2014 -- Mattie died 227 weeks ago today.

Tonight's picture was taken in January of 2006. I loved Mattie's pajamas with feet. If you look closely at this dinosaur outfit you may see stickers attached to the front. Mattie loved to collect stickers. Stickers of all kinds! If someone gave him a name tag or a sticker, he always kept it! Sometimes he would wear them (which you can see two on his pajama) and when he was tired to doing that, he then would place the sticker on his wooden bed frame. Again, something that I would never have liked pre-Mattie. To me one doesn't deface furniture like that, but for Mattie it was one of his many collections that he enjoyed. It is hard to imagine that I still have the sticker collection on our guest room bed but I no longer have the creator!


Quote of the day: How often, you wonder, has the direction of your life been shaped by such misunderstandings? How many opportunities have you been denied--or, for that matter, awarded--because someone failed to see you properly? How many friends have you lost, how many have you gained, because they glimpsed some element of your personality that shone through for only an instant, and in circumstances you could never reproduce? An illusion of water shimmering at the far bend of a highway. ~ Kevin Brockmeier


The District of Columbia was under a snow advisory all day. Everything was closed from schools to the government. Having grown up as a teenager in Los Angeles, I do not have the foggiest notion of how to drive in the snow. Therefore on snow days, I either walk or take the metro. However, today I was inundated with Foundation think tank work and never left my computer. I feel truly privileged to be working closely with two psycho-oncologists on this project. Our overall team has about 40 people, but these two women are incredible leaders and they also care about Peter and me and what we went through with Mattie and continue to go through as grieving parents. 

In the midst of working, I received an email from a mutual friend about our friend's birthday luncheon tomorrow. For my faithful readers, you know I have been debating whether to attend this lunch or not, given the fact that all of the women are part of a mom's group. Moms talk about their children and some times it is hard to blend into such a group. Not only do I not fit in, but I know I unintentionally make people nervous. Any case, the organizer of the lunch wanted to assess how many of us were planning to come to lunch tomorrow even if schools were closed due to snow. I answered her back saying that I would wait to hear the verdict from others since her question did not apply to me. I did not say anything else, but the email sender felt so badly that she called me on the phone to apologize. Naturally I am the only one in the group without a child and therefore asking me whether the snow will affect me tomorrow could be deemed as insensitive. I did not interpret it that way honestly. Instead, I just felt like it was another reminder how different I am from my friends. YET AGAIN!!! 

Tonight's quote seems to just scream out as TRUE. It applies so deeply to a grieving parent. Our lives are constantly shaped now by misunderstandings. Just like the one today for example. Parents who have healthy children and parents who lost their children really communicate on two different wavelengths and sometimes in the process we land up hurting each other. We can misinterpret what the other is saying. But as a by-product of miscommunications it can affect my behavior. Such as deciding not to go to a lunch, an event, or to avoid an interaction altogether. Mainly because I fear what will happen and be said. My actions are influenced by past miscommunications, they aren't manufactured in my head. They are real. With each social event now, I have to ask myself whether it is worth going? Because unlike in the first year after Mattie died, now for the most part no one is there to talk over my feelings with me or to cheer me up when something sets me off or puts me in a funk. 

Grieving the loss of a child has a direct impact on your friendships. You lose many friends in the process for various reasons. Certainly you may gain a few, usually because of a shared grief and loss. But the line in tonight's quote that circles around in my head is............."failed to see me properly!" I couldn't have said it better. There are two worlds for me the world where people have healthy children and the world in which you have lost a child to cancer. Because Mattie's battle is a part of me and lives within me, its impact isn't always evident on me. After all I shower, wear clean clothes, put myself together, and talk and act coherently. Yet unless you really listen...... you will always fail to see my properly and also fail to see how Mattie's death influences what I see, hear, think, and feel.  

Monday, January 20, 2014

Monday, January 20, 2014

Tonight's picture was taken in January of 2006. I think the only reason Mattie liked bath time was because each time he went into the tub he took an arm full of toys with him. Practically anything Mattie owned went into the tub not to get washed per se, but to use the item in whatever play scheme he wanted to concoct that day. When Mattie first did this I got upset. To me there were toys that could go in the bathtub and then there were things that shouldn't go in water. But after a while, reality hit and I realized it just did not matter. As long as the items weren't going to hurt Mattie in the water, I felt it was important to nurture his curiosity and determination.


Quote of the day: We must not wish for the disappearance of our troubles but for the grace to transform them. ~ Simone Weil


I was mostly glued in front of my computer all day today working on one of the Foundation think tank documents. Since the think tank is weeks away, it is important to get these materials wrapped up soon. In practically a year's time this amazing group of mental health professionals from around the country, who we have helped to assemble, has generated a first draft of a national psychosocial standard of care for childhood cancer. It is quite remarkable what a group of dedicated individuals can accomplish! It truly sets the tone and creates the motivation necessary to generate such a vital document.

I was in Mattie's room most of the day. My desk is now in his room and it overlooks our garden and complex plaza space. Needless to say I have a bird's eye view of things. I got to see my neighbors today, I watched packs of sparrows eating at our bird feeders, and I even got to see two little boys playing around outside. These two fellows couldn't have been more than 3 years old. Any case, I suspect, when I am not around, or looking through the window, they help themselves to Mattie's sand box, which is outside in the plaza space. Actually all the kids in the complex know to visit Mattie's sandbox. I leave it out in our complex space for two reasons. One of which is it is hard to see it on our deck and the second is I know that if Mattie can't enjoy it, some other child might as well have the opportunity. 

Any case, I could tell that these two boys wanted to pop open the frog sandbox lid and jump inside. But the mom told them not to, most likely because she could see me from the window and I guess she figured she did not have my permission to use the sandbox. As I was trying to work and concentrate, I could hear two big meltdowns happening outside. So literally I put my shoes on and went downstairs to talk to their mom. I explained to her that her boys were welcome to use the box and play in it anytime. The boys were thrilled and the crying stopped immediately!!! It turns out that this mom is friends with my friend Christine, and happens to live in our complex. A small world indeed, but this mom knew exactly who I was.

Mattie was actually very territorial about his sandbox. When he was alive, he did not allow just anyone playing in it. So naturally my decision to share the box, may not be quite what Mattie had in mind. In fact, my feelings about this sandbox have changed over time. At each stage of the grieving process, my reaction to seeing children in Mattie's box varies. Keep in mind that many of Mattie's toys and wooden ramps that he made are still inside the box. Needless to say, when I see a child interested in Mattie's box now it reminds me of him and somehow it helps me keep his memory alive. 

Sunday, January 19, 2014

Sunday, January 19, 2014

Tonight's picture was taken in January of 2005. I was working in the kitchen and naturally my sidekick was with me. Mattie always wanted to be part of the process and he responded positively to responsibility at an early age. If I was doing a task, he wanted to do it too. Which was most likely why I snapped a photo of that moment in time.

Quote of the day: It takes a lot of courage to release the familiar and seemingly secure, to embrace the new. But there is no real security in what is no longer meaningful. There is more security in the adventurous and exciting, for in movement there is life, and in change there is power. ~ Alan Cohen  

Peter and I had a plan for the day today, which we established last night. One of our goals was to go out to lunch and to bring my stack of Foundation paper work with me. We established this tradition early on, of going out to lunch and working. We seem to get a lot more accomplished over a weekend lunch, when we are together and can brainstorm Foundation issues and next steps. Maybe it is being out of our home, away from the usual distractions, or perhaps it is having food and conversation that simply works. All I know is when things begin piling up for me and I deem that there are Foundation items that must be discussed, we plan a working lunch.  

I got up early today to get a jump on the day and one of the things I decided to tackle before proceeding with the day was to clean out a large flower pot within our living room. This flower pot had my beautiful windmill palm in it. However, we noticed that the palm got infected and died. Not a pleasant sight in the middle of winter, but I have learned that some plants really do not winterize well inside a home. This palm was clearly such a candidate. Any case, Peter carried the large pot outside on our deck and I decided to scrub out the pot and wash it out so we could repot a beautiful croton plant in its place. I turned on our hose. Mind you it is in the 30s outside, and frankly this did not seem to be a red flag to me, since I have used our hose before in the winter time. Any case, while having the hose on and cleaning out the flower pot, Peter noticed the water wasn't coming out of the outside water spigot properly. He untwisted the hose and then it seemed to work better. Once things were cleaned up we both proceeded inside. When we opened our front door, Peter panicked and when I saw what he was panicking about, I got it! We had a flood all over our kitchen floor, an inch deep and the water was gushing into our hallway. If we didn't mobilize sooner, it could have easily migrated to our dining and living rooms. Peter grabbed a broom and tried to brush the water out our front door, until we remembered our wet/dry vacuum in our shed. Thank goodness that Peter likes gadgets. Because this gadget saved our home today. While Peter was digging through the shed to get out the vacuum and assemble it, I was trying to manage the water inside. The water couldn't have been sitting on the floors for more than 10 minutes and between the two of us we moved quickly.  

What was Peter's greatest concern was that we had burst a water pipe and therefore if that was the case, no amount of vacuuming would have solved this problem. Thankfully a pipe did not burst. Instead the hose was just frozen and when I turned on the water faucet outside, the water couldn't come out of the hose, so it backed up into the walls and into our kitchen. Once we had the majority of the water sucked up, we called our complex's maintenance who came over and felt we handled this very well and now of course needed to have air move over the space to dry it to prevent the floors from buckling and my worse fear mold. The complex was completely out of fans. We have two fans typically, but we lent one to our older neighbor and we did not want to take it from her since she still uses it. So we scrambled and went looking for a fan today. It isn't fan season, but we did track one down at a store. So now we have fans going, we have the windows open (mind you it is in the 30s), and we put an air purifier in the kitchen. This scenario could have been much much worse today. We destroyed a rug, but no furniture was damaged and all the floors seem intact right now. All I know is I had a good intention to clean out a dead plant and replace it, and instead I landed up washing out part of our first floor. Needless to say, we are both tired from a full day of cleaning and dealing with water everywhere.