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. 

Saturday, January 18, 2014

Saturday, January 18, 2014

Tonight's picture was taken in January of 2005. Mattie attended a birthday party with his cousins, who lived in the Washington, DC area back then. As you can see the children were eating a cupcake. Seeing Mattie's plate doesn't surprise me in the least. Mattie just did not like sweets! In fact, he usually landed up giving me his cakes and treats. In that sense Mattie and I were the exact opposite. Also of note in the photo was Mattie's sippy cup! A sippy cup came with us at all times, EVERYWHERE. Mattie did not like water and he also didn't like juice. His drink of choice was always MILK. Rather ironic that of all the cancers Mattie could get, he got bone cancer. Our joke prior to Mattie's cancer diagnosis was that Mattie most likely had the strongest bones from all the milk he consumed. 


Quote of the day: Your vision will become clear only when you can look into your own heart.  Who looks outside, dreams; who looks inside, awakes. ~ Carl Jung


Peter and I started the day with a plan. A plan on the weekend is always a good thing for us. Believe it or not, four years into Mattie's death, and the weekends are still very challenging for us. Mainly because weekends symbolize family time and how we used to spend our Saturdays and Sundays no longer exists. Our world changed, we lost our son, but the reality is the world in which our friends live has remained the same. They still have sport activities, school events, and other social gatherings. These things occur without us, which I must admit is earth shattering to a bereaved parent. For us our world ended when we lost our child and at times it is hard to grasp that others are still standing, breathing and going about their every day business. Almost as if we are living in an alternative universe where nothing makes much sense anymore.

I have to say that starting to clean out Mattie's room was very difficult for me to do this Fall. I really took on this challenge by myself and it was no small physical or emotional task. Yet by having the courage to address Mattie's space, I was able to reclaim it so that I can showcase Mattie's art work and his spirit in a more meaningful way. However, it has been like a domino effect. Once I tackled Mattie's room, I think it inspired Peter and I to address other areas throughout our home. Today we went running around together looking for two new chairs for our living room. We purchased one today and dragged it home together. Slowly we are trying to change the look of our surroundings so that we can feel comfortable once again in our own home. It has taken quite a bit of time to reach this stage.

This evening we joined our friend at a DC tradition, called the Capitol Steps. Peter and I saw this show a decade ago. But the beauty of this show is it changes from year to year because it is basically political satire set to music. It makes fun of both political parties, and it does it in a light, humorous, and witty manner. Needless to say if this show doesn't make you laugh, nothing will. For those of you not familiar with this show, here is some history on the Capitol Steps group:

The Capitol Steps began as a group of Senate staffers who set out to satirize the very people and places that employed them. The group was born in December, 1981 when some staffers for Senator Charles Percy were planning entertainment for a Christmas party. Their first idea was to stage a nativity play, but in the whole Congress they couldn't find three wise men or a virgin. So, they decided to dig into the headlines of the day, and they created song parodies & skits which conveyed a special brand of satirical humor. In the years that followed, many of the Steps ignored the conventional wisdom ("Don't quit your day job!"), and although not all of the current members of the Steps are former Capitol Hill staffers, taken together the performers have worked in a total of eighteen Congressional offices and represent 62 years of collective House and Senate staff experience. Since they began, the Capitol Steps have recorded over 30 albums, including their latest, Fiscal Shades of Gray. They've been featured on NBC, CBS, ABC, and PBS, and can be heard 4 times a year on National Public Radio stations nationwide during their Politics Takes a Holiday radio specials.

I think laughter is very good medicine. Literally! Peter and I haven't laughed this hard in years, nor felt free enough to allow ourselves to laugh. Tonight was an excellent diversion that did not remind us of cancer or our loss. Sometimes when reflecting upon the loss of Mattie, we feel paralyzed and guilty. Unable to enjoy anything around us. As Peter said, today I was not in a fog or cloud. Which I typical am in.

When we arrived home from the show, we were greeted outside by our upstairs neighbors. They were having a "SIDEWALK ASTRONOMERS" party in memory of John Dobson. I learned today that Dobson died on January 15, 2014 in Burbank, CA (where my parents live). In the 1960s, Dobson co-founded the San Francisco Sidewalk Astronomers, an amateur astronomy organization that aimed to popularize astronomy among people on the street, along with Bruce Sams and Jeffery Roloff. Sams had built a large telescope but because he was only 12 at the time he was not eligible for membership in the only local club, the San Francisco Amateur Astronomers, thus the "San Francisco Sidewalk Astronomers" was born. It was also at this time that Dobson's simple form of telescope, which came to be known as the Dobsonian, became well known after he started teaching classes to the public on how to make your own telescope.

Needless to say, I had the opportunity to look at stars and even the MOON tonight through a high powered telescope. I have never seen Mattie Moon so close up. I could see the craters on the moon and naturally I had to wonder whether Mattie was looking back at us. I can see Mattie Moon outside the window, but the view through the telescope was truly remarkable and made me feel slightly closer to Mattie tonight. 

Friday, January 17, 2014

Friday, January 17, 2014

Tonight's picture was taken in January of 2004.
This was SO Mattie! He was doing one of his favorite things.... building and creating with boxes! At an early age Mattie understood the art of using tape and even a glue gun. In fact, it was Mattie who taught me, since I never used a glue gun in my life. The irony is learning from Mattie, I can now create just about anything with a glue gun. Needless to say whenever I use a glue gun, I think of Mattie. 


Quote of the day: We make our world significant by the courage of our questions and the depth of our answers. ~ Carl Sagan


When my alarm went off this morning, I was completely disoriented. Do not ask me the content of my dream or what I was even doing in it. All I can remember was that Mattie was in it. It actually seemed so real that when I woke up, I thought perhaps Mattie was really with me. I guess on some level he was/is! Soon after Mattie died, the incredible loss and longing for him was very intense. Not that I don't wish to see and experience Mattie now, I do, but the mind gets used to this physical loss. It is that part of losing a child that becomes ingrained in you over the years. I know Mattie died, he isn't coming back, and therefore, I won't be hearing his voice and footsteps (that too is part of the whole nasty loss picture). It takes time to get to that place, and through that journey there are unpleasant feelings and thoughts along the way. Yet having a dream like the one I awoke to today, in a way brings me back to my earlier days of grieving. Which is why I am quite sure that grief isn't predictable and most definitely not logical. There are days I feel as if I have mastery over my grief and then there are days when I feel like I am back to square one trying to determine how I am going to make it through the day, another week, or another year?!


This week I have been working on the Foundation's Combined Federal Campaign application (which is now off my plate and has been submitted!), planning for our February 13th think tank meeting in Tampa, FL, and beginning intense plans for our annual Foundation Walk on May 18th. But in the midst of that I will be teaching at the George Washington University in a week, trying to plan a keynote speech and I have also been invited to write a book chapter on psychosocial issues associated with childhood cancer. The chapter will include the importance of advocacy work and how parents play a vital role in treatment and beyond. This book is being edited by Mattie's surgeon and the focus of the book is sarcomas. Any one of these tasks I mentioned could keep me busy, but in totality, I am beginning to feel like I need a staff. I certainly know there would be no way I could accomplish what I am doing if I was working outside of the Foundation. When I reflect back on my role as President, from 2009 to now, I realize that it has been a steep educational curve and an adjustment process to transition from Mattie's mom to Mattie Miracle's president. These roles are NOT one in of the same, but for me back in 2009, I saw NO distinction.  



I snapped this photo tonight because I wanted to share my latest glue gun creation. I transformed some white picture frames by adding sunflowers and glass pebbles to them. When Mattie was battling cancer, friends would visit (when I was home) and drop off sunflowers for me. I find the sunflower such a happy and strong flower. So I wanted to incorporate that memory into Mattie's room. I will never forget my sunflower gifts or the sentiments behind them. Also today while I was at the Hallmark store, I found this cute wooden frame saying..... love you to the moon and back! That saying immediately caught my attention because that is exactly what I always said to Mattie!!! 

Thursday, January 16, 2014

Thursday, January 16, 2014

Tonight's picture was taken in January of 2004. Mattie was my side kick at all times. If I went into the kitchen, there he would be! It is ironic that when you are a parent of an active (VERY active!!!) toddler, there are times that you wish for just two minutes of alone time. Time to catch your breath and sit still. As our children age, we quickly realize that these precious toddler and preschool years go by way too fast. Of course experiencing Mattie's death has only furthered my feelings that I made the right decision to be a full time mom so that I could spend my days with Mattie and not miss out on his short life and development. 


Quote of the day: The tragedy of life is what dies inside a man while he lives. ~ Albert Einstein


My dad had to have day surgery procedure today. Since my parents live in Los Angeles, it does make it a bit harder to help and be supportive from a distance. Yet thanks to modern technology, my mom and I were in constant communication. But even day surgery lands up being just that..... A FULL DAY! Naturally before any surgery, and keep in mind the best surgery to have is NO SURGERY, one always feels anxious and scared. In our family, just entering a hospital can be traumatic. Which of course is the result of Mattie's cancer battle and death. 

At one point today, my mom informed me that my dad finally made it into the recovery room. As I learned all too well from Mattie's three massive surgeries (some of which were over 8 hours long), the recovery process is almost worse than the surgery itself. But just the mention of "recovery" actually makes me very uneasy. It did because in my mind I can still picture Mattie in the recovery unit. 

After Mattie's three surgeries, he was always taken to the PACU (Post-Anesthesia Care Unit). In my perspective the PACU is like a war zone and it requires a special team of nurses and physicians to work in this space. Mainly because people are waking up from anesthesia and a whole host of reactions can happen from that, both physically and psychologically. In addition to coming off of anesthesia, pain also set in. 

Typically when Peter and I were called inside the PACU (which means going through a closed set of doors), I could hear Mattie screaming and crying all the way down the hallway. It is blood curdling and even worse to observe. Mattie was frightened, immobilized, and in tremendous pain. To top it off, you are surrounded by other patients. All around you! It is like one big room with a ton of hospital beds. So in essence you are experiencing the pain, but magnified. Magnified by every patient within the room! Seeing Mattie after limb salvaging surgery was overwhelming. Mattie was bandaged up, with drainage tubes everywhere, he was disoriented, agitated, crying, hooked up to several monitors, and the worst in pain. We not only had one of these experiences, we had THREE! So unfortunately when I hear recovery, I am taken back to 2008 and 2009 in the PACU of Georgetown University Hospital. I imagine some people think that over time these memories fade and they become easier. Unfortunately they don't! 

Mind you parents are not always allowed in the PACU early on in the recovery process. But because we were so concerned, the wonderful staff within the PICU called down to the PACU and made our visiting possible. Certainly it was daunting for us to be there, but Mattie really needed us and frankly I think the staff was happy to have parents there to manage Mattie's fears and emotions.  

Thankfully tonight as I write this my dad is on his way home and hopefully he will have a good night. I am just conditioned to think that surgery brings about pain, fear, and chaos. But I need to remind myself that not every surgery is like Mattie's, THANKFULLY!

Wednesday, January 15, 2014

Wednesday, January 15, 2014

Tonight's picture was taken in January of 2004. Wrapped around Mattie was his favorite blanket. Mattie received many blankets as gifts, but the fleecy texture of this one caught his attention. It is ironic when I look at this photo how different our living room is now! Back then it had all the signs of a child living in our home, filled with toys, books, puzzles, and all the other gear that comes with having an active and healthy child. However, our living room also saw the other extreme because in 2008, it housed a hospital bed, IV poles, a commode, pain pumps, and a great deal of other hospital supplies. All the signs that we lost our healthy and active child. Now of course, there are remembrances of Mattie all over the living room, but it will never be like the photo captured here. 


Quote of the day: If your actions inspire others to dream more, learn more, do more and become more, you are a leader. ~ John Quincy Adams


Today I had the opportunity to visit my friend who hasn't been feeling well. While at her home, I got the chance to chat with her daughter and also spend some time with my friend's grandchildren. Both of whom are adorable. One of the children has to be around six months old and he is crawling up a storm. At one point his mom had to go assist my friend and therefore I got to interact with the children. Something I haven't done since probably Mattie was alive. Any case, as all young ones do, the six month old started crying when his mom left the room. So naturally I picked him up and tried to comfort him. But I knew that wouldn't be enough. Mattie taught me well. When Mattie began to cry at that age the number one way I could calm him down was by distraction. I would pick Mattie up and if at home we would walk over to a window and examine cars, trucks, and planes going by. This always grabbed Mattie's attention from day one! He simply had a fascination with locomotion and how things worked. It is funny, I did not expect to have this memory today while visiting my friend, but certain activities and circumstances can trigger such thoughts and memories of Mattie. This was an unexpected moment and life for a bereaved mom is filled with a whole bunch of them!

Today I had the opportunity to connect with the organization which invited Peter and I to be a keynote speaker at their May conference in Ohio. We are going to schedule a conference call to discuss the specifics, but for my interested readers, the organization's acronym is APHOES (http://www.aphoes.wildapricot.org/), which stands for The Association of Pediatric Hematology Oncology Educational Specialists. They would like us to speak for an hour and they are very much interested in how on earth we pulled together a multi-disciplinary team of mental health professionals to draft a psychosocial standard of childhood cancer care. I am motivated and passionate about the Foundation's mission and goals, and of course keeping Mattie's memory alive. I learned early on in the childhood cancer arena that I would have to stick to my convictions and follow my own heart. A part of me was stunned to see the competition and turfdom issues in the childhood cancer group and association space. I must admit of course that this is life and human nature, but I do not see a place for such behavior when discussing childhood cancer. So at one time I was active with different groups and then after countless negative experiences, I realize this wasn't helping me as a person. I was already grieving and feeling badly, I did not need to feel that I also couldn't make a difference. 

When I received an email today from a leader in the field, who I don't know and who is praising Mattie Miracle's work, it makes me stop and pause. Not that I am sending up balloons and confetti, not at all, but it signals to me that on some level we are making a difference and we are uniting people together toward a common mission..... a psychological standard of care. In many ways, Peter and I had the DREAM to have such a standard of care, and we used the platform of the Foundation to INSPIRE mental health professionals (who are naturally committed to their own field and children with cancer). So I guess from John Quincy Adams' perspective.... we are leaders! At the end of the day of course my question is always..... would this make Mattie proud and is he happy with what we are doing? This is our ultimate compass!   

Tuesday, January 14, 2014

Tuesday, January 14, 2013 -- Mattie died 226 weeks ago today.

Tonight's picture was taken in January of 2004. Mattie was almost two years old. I snapped this photo because Mattie's behavior intrigued me. Mattie was the ultimate multitasker and never watched TV by sitting on the couch or sitting still for that matter. I limited Mattie's TV viewing to certain DVDs and what I would call either educational or wholesome shows. Only certain things grabbed Mattie's attention such as Baby Einstein videos and Elmo on Sesame Street. Everything else Mattie was pretty oblivious to. Meaning that he would be processing what he was hearing, but his hands and body were busy building and designing something in the background. Why this photo is so unique to me is because it illustrated that something on the TV screen captured Mattie's attention so much so that he stopped what he was doing to walk up to the screen and to check it out in more detail. 

Quote of the day: When we are no longer able to change a situation, we are challenged to change ourselves. ~ Viktor Frankl

Frankl maybe by far one of my all time favorite psychotherapists. I admire what he had to overcome, as a survivor of the Holocaust, and how he used his experiences to pioneer his own form of therapy. Techniques which are still used today. When I read Frankl's words, I find great meaning in them, so much so that I think any one of us can apply his quote to our own situation. We all are faced with things in life in which we find we have absolutely no control. 

As human beings feeling out of control, unable to navigate one's life and destiny, is beyond problematic. It seems like we all navigate by this unspoken golden rule which is if we do all the right things and work hard, only good results will be the outcome. Unfortunately through Mattie's diagnosis and most definitely his death, I have experienced the reality, a reality which still remains quite daunting in my mind. The reality is that osteosarcoma was out of my control, modern medicine isn't so modern, and our society does not always understand and appreciate the grief of a parent for the death of a child. These are all facts, facts that I can not necessarily change. Which is why Frankl is correct to some extent that surviving means adapting and changing from within.  

But change, as we all know, is difficult. Today I was invited to a birthday luncheon for a friend. When I looked at those in the email who were included at the luncheon, I realized I would be the ODD one out. Because all the women on the invitation list were part of a mom's group. Certainly women can talk about other things than their children, but an intact mom's group naturally talks about this subject matter. At one time I most likely would have gone to this luncheon, but I have learned over time that such venues don't always work well for me, and I also make some moms nervous. After all, they don't know what they can discuss around me. So the question is how does a person like myself who lost an only child integrate back into society? A society in which most of her friends have children. That was the one commonality I shared with several of my friends. Now what? I can't change my situation and I can't change how people will behave around me. So the only answer is to change myself. Which means either I can go to the luncheon and have different expectations and prepare myself, or not go at all. 

Tonight while I was working at my desk in Mattie's room, I looked out the window. It is a wonderful thing to have a bird's eye view! Any case, this is the sight I saw, a regal and full Mattie Moon! As today marks yet another Tuesday, the day Mattie died, I stare and wonder what message is being sent down to me from Mattie Moon.