Saturday, July 20, 2013

Saturday, July 20, 2013

Tonight's picture was taken in August of 2009. In fact this photo was taken a month before Mattie died. By that point Mattie was having trouble breathing and needed constant oxygen and was also connected to a pain pump. The oxygen and the pain pump were literally in the trunk of the car. For my faithful readers, you know all too well that this red vehicle was named "Speedy Red." In a way, Mattie's special wish was to always have a ride-on car. So my parents bought it for him and poor Peter schlepped it home and assembled it. Speedy Red gave Mattie GREAT pleasure. It did not matter how hot it was outside, we would venture out on Speedy Red. What I find fascinating though was Mattie had a natural understanding for the mechanics of driving. He just got the notion of a gas pedal, brakes, and steering. Since I wasn't sure if Mattie could figure out how to drive and I was worried about his safety, I usually rode in the passenger seat as his helpful side kick. However, once Mattie quickly caught on, he insisted on riding alone. I honored that request but was usually walking or running beside him because up until the day he died he was my number one priority.


Quote of the day: If there's a thing I've learned in my life it's to not be afraid of the responsibility that comes with caring for other people. What we do for love: those things endure. Even if the people you do them for don't. ~ Cassandra Clare


Peter and I have a busy next couple of days. Next Wednesday, we leave for a European cruise with my parents. Needless to say for those of you who love my travel blogs, I have a lot of adventure in store for you. I already thank you for checking in and traveling with us. I truly appreciate the support I get from our readers, because I would have to say that since Mattie's death traveling is hard for me. First off, I HATE flying, especially over water. If I never had to board a plane again, you know what? I wouldn't miss it in the least. I wouldn't even feel like my life was limited. I would simply feel happy being on solid ground. People have tried to talk to me about visualizing all sorts of calming things aboard a plane, but I assure you it doesn't work. My physician even suggested I take anxiety meds to deal with this fear, so I tried them once, and like Mattie, I had the exact opposite reaction for which the drug was intended. The medication made me HYPER and MORE agitated. So there we have it. I fly because I don't want my fears to limit others, but I HATE it.

Tomorrow morning, Peter boards a plane for Boston. He is going to deal with our car which was left there due to an accident. I will explain more about this journey tomorrow. But this ordeal with the car also brings me sadness. This car holds many memories for us. It took us on all our road trips with Mattie, I remember sitting with him in the back seat when he was a baby, and the list goes on. The car's license plate is MMCF (Mattie Miracle Cancer Foundation), and to me it is our official Foundation car. There is just so much wrapped up in this car, and with Mattie gone, I do cling to THINGS. They are all that we have left.

This evening, Peter and I invited our friend Maria over for dinner. Maria is the special lady who flower sits for us when we are gone. I have many green babies and they require LOTS of water in this heat. Sometimes daily. Prior to Maria, we had someone else care for our plants and when we got home from one vacation so many things were dead. I don't like coming home to dead plants. That truly depresses me. Since Mattie's death our plant supply has increased almost 10 fold, we have surrounded ourselves. I suppose plants symbolize life and things to nurture. Any case, this year I started allowing people back into our home. I not only like eating, but I also like cooking. It feels like 110 degrees outside and therefore turning on the oven in our home isn't happening. Normally heat doesn't bother me, but since I have had an intense headache for two straight weeks so far, I limit my exposure to heat! I made the mistake of baking an apple pie yesterday morning, and I almost passed out. So whatever I prepare tonight Peter is cooking outside on the grill. The oven remains off! 

Friday, July 19, 2013

Friday, July 19, 2013

Tonight's picture was taken on August 6th of 2009 (the day after we learned Mattie's cancer was terminal). To me this photo puts SO many things into context. Mainly because about a month later, Mattie died. It is hard for me to even wrap my head around the fact that Mattie was in such tremendous pain here and yet look..... HE WAS SMILING!!!! Naturally I am biased but Mattie's smile had a way of making you feel  happy. Cancer did not change this simple fact about him and sometimes when I pause and think about what this six year old went through, I have to say he was one of the bravest and most courageous people I have known.  


Quote of the day: We’d met at a carefree time, a moment full of promise, in its place now were the harsh lessons of the real world. ~ Nicholas Sparks


As my faithful readers know, I am a big Nicholas Sparks fan. I have read all of his books and it is thanks to his books that I wanted to go to Emerald Isle, NC this spring. When I read Sparks' quote tonight, my immediate reaction was this describes PETER AND ME! Peter and I met in college, so in my opinion, that in and of itself describes a carefree time in one's developmental history. But Mattie's cancer diagnosis and death have certainly replaced the promise we once had with the harsh reality of life. It is the simple truth.

The highlight of my day today was seeing my friend Nancy. Nancy lives in New York and was here in DC for a conference. The conference that brought Nancy to town was the same conference in which we met many years ago. Nancy and I are colleagues first but quickly became friends. Now several years later, though I am no longer emotionally connected to this particular association, Nancy and I remain friends and confidantes.

We covered a lot of territory over lunch and one of the birthday gifts Nancy gave me was a verbal gift. She wanted me to know that she feels people are drawn to me, that I make people feel important and cared about, and this is most likely why I was considered a leader in the counseling field. Nancy's words are a gift that will always remain with me.

This evening Peter and I went out to dinner. While seated, I had the unfortunate pleasure of watching a couple with their only child eating dinner. The fact that it was a family that looked like ours at one time wasn't what set me off. What set me off was the level of absolute self absorption and dysfunction. This couple had a healthy and active child in their presence and yet do you want to know what was happening at the table?!!! Absolutely nothing. No one said two words to each other throughout the meal. Each parent was glued to his/her own smart phone. I was disgusted. Meanwhile the child was bouncing around the restaurant totally unsupervised. Mind you this was a young child and we are in the heart of the city. It just left me shaking my head and wondering. Sometimes we don't see the simple gifts right in front of us. I wanted to tell these parents to........... Put down the PHONE, have a meaningful conversation, and build bonds and connections that will make life worth living.

Thursday, July 18, 2013

Thursday, July 18, 2013

Tonight's picture was taken in October of 2008, around Halloween. Next to Mattie is Jey. Jey was Mattie's CT tech and they developed a close rapport and connection with each other. In fact, Jey used to call Mattie his "little brother!" When we were in the Hospital, and Jey knew Mattie was in-patient, he would come up to visit Mattie when he was on a work break. Jey always went the extra mile for all of us and I recall him telling me that it is vital hospital personnel remember why they became medical helpers in the first place. He told me that when you forget about the motivation and the job becomes rote then the effectiveness of the patient care one provides goes down. There is great truth in his sentiments. With Jey it was always clear to me what his motivations were and our family appreciated the personal bond and care he provided us. Jey understood life was tough enough for us, therefore, he tried to make Mattie's scanning process as painless as possible.


Quote of the day: No one knows for certain how much impact they have on the lives of other people. Oftentimes, we have no clue. ~ Jay Asher


Asher's quote is SO applicable for tonight's posting. However in our case, not only do we have a CLUE about the impact of Mattie on others, but whenever I interact with people who went above and beyond to help us when Mattie battled cancer, I let them know it. I think not expressing one's thanks, not giving positive feedback, and not showing gratitude are big mistakes. It makes me feel good to acknowledge these amazing people in our lives and I feel it is important for them to know the significant impact they had on Mattie's life and ours. Why keep it a secret? Mattie died three years ago, yet all our Georgetown University Hospital family mean a great deal to us. Time doesn't cloud my feelings in this respect.

I had a meeting today at the Hospital to discuss the monthly nurse support group that the Foundation funds. This is our second year funding this service. While walking on campus to the meeting, I bumped into Jey. Jey always calls me "mom." This is the only time I hear this word now. What I love about Jey is his honesty. He has no trouble reminding me of the impact Mattie had on his life and I SO appreciate this!!! What you need to understand is that after Mattie died, Jey left his position in the radiology department. He no longer could work there. Now he works in a totally different division of the Hospital. Mattie's death was tragic to Jey and he said he just did not have the heart to return to his work. Personally I get Jey's decision and I am deeply touched that my son was so loved by his "big brother." It is amazing the impact my seven year old had on people!!!

On September 8, 2009, the day Mattie died at Georgetown. Jey found out and came to the floor. After the nurses cleaned and bagged Mattie's body (a process no parent should have to see or experience!), Jey insisted on taking Mattie's body down to the morgue personally. He said no one else was taking his "little brother" down. He wanted to make sure Mattie's body was treated properly and correctly. I will never forget Jey's words. Words that evoke feelings remain with me ALWAYS. So when I see Jey, even now three years later, how could I not have a special feeling about him? When you see someone love your child, respect and understand your child, you begin to love them too!

Wednesday, July 17, 2013

Wednesday, July 17, 2013

Tonight's picture was taken in May of 2005. Though a bit blurry, I still love the photo. We took Mattie to a butterfly exhibit at the Smithsonian Museum and as you can see a butterfly landed right on Mattie's hand. He absolutely loved it! I tried to snap the photo of them together, but since both of them were moving to their own beat it came out blurry.


Quote of the day: Remember: the time you feel lonely is the time you most need to be by yourself. Life's cruelest irony. ~ Douglas Coupland


I came across tonight's quote and it immediately resonated with me. I am not sure I would have shared Coupland's philosophy though prior to Mattie's death. In a way it seems very contradictory that when lonely we should be by ourselves. Sometimes I think the exact opposite is true, when feeling lonely or isolated, we have to change things up and force ourselves to interact and re-engage with others.

However, I am not sure that strategy works too well when dealing with grief. Especially the grief of losing a child. Frankly that is a form of grief that not many (thankfully) can personally relate to. It is an unnatural grief and a grief that scares parents hearing our story. Our society doesn't handle the topic of death and dying very well to begin with, but factor in the death being that of a child, and the whole subject matter becomes taboo. Therefore it naturally can lead to loneliness and isolation from others. In a way it is like being from a different culture, we no longer fit in with the mainstream culture. We talk a different language and our experiences are different from the majority around us.

I do think that there are times within the grief journey that parents must separate themselves from others. I am not saying become reclusive, but there are days the rest of the world needs to be shut out. It has to be, because the pain of the loss is more than enough for us to handle, and we couldn't possibly take on any other issues or better yet have to explain our feelings to others who may not truly understand. Nonetheless this isolation is fraught with conflict. Because in order to survive grief, parents who lost a child need to be heard and to tell their child's story. Not just once, but continually. Yet how is this done, when we feel lonely, different, and isolated? Again, with grief I usually have more questions than answers, but I think it is a matter of finding a balance. Some days being alone and with our own thoughts is absolutely necessary, but then there are days when we can let others in to help, to listen, and to support us. I have seen this complexity within my own life, but I have also seen how my isolating behavior also impacts those closest to me who want to help.

Friends and family who want to be there long term, somehow understand our highs and lows, maybe not why we have them or what triggers them, but they accept them as part of the journey. In the end, it is honesty that helps with the loneliness and the isolation. When we can be honest with our friends and family regarding our needs for alone time, help, and support, then I have personally found that I become less agitated and in a funk. Believe me there is no better term for these feelings than a FUNK. It is very scary to be living without your child, to not have a parent identity anymore, and to have to determine what the future may hold for you. All of these problems can produce one very large existential crisis, which is hard to manage but even harder to cope with without the love and support of those around us. I suppose my last thought is if you are helping someone through grief, understand the need for alone time, but don't get discouraged by this. Keep reaching out to the person grieving, in the end I have no doubt it will make a difference.

Tuesday, July 16, 2013

Tuesday, July 16, 2013 -- Mattie died 201 weeks ago today.

Tonight's picture was taken in July of 2007. Behind Mattie was one of his tinker toy creations. Mattie designed his version of a wind mill and stood proudly next to it for a photo. Mattie liked to build structures and then like any artist, would want to live with the work for a period of time. Sometimes he added onto them, designed play schemes around the creations, or simply admired them. There are so many things we miss about Mattie, but his creativity and the life that his creativity produced in our home are at the top of our list.




Quote of the day: People come, people go – they’ll drift in and out of your life, almost like characters in a favorite book. When you finally close the cover, the characters have told their story and you start up again with another book, complete with new characters and adventures. Then you find yourself focusing on the new ones, not the ones from the past. ~ Nicholas Sparks


There is great truth in Sparks' quote about the fictional characters in books. They are fleeting in our lives, very temporary. They are with us for the duration of a book, and usually once we close the book, that is where we leave them. Of course every once in a while, we may read a book in which the main character evokes all sorts of thoughts and emotions within us, and therefore aspects of this tale lingers on.

Over the course of my life, I have met people who unfortunately live their lives as if they were reading a book. They make connections and friendships, but people are dispensable to them. Once they get what they need or help achieving what they wanted, they then move on. To some extent flexibility and understanding for changes within friendships are crucial aspects for surviving life.

However there is something about Sparks' quote that caught my attention today. Mainly because I view the fact that I survived Mattie's death as altering my perspective and clouding my judgment about what he is saying. He ends his quote with saying, "not from the past." If I take it one step further, I would say that most people live their lives future focused. They may learn or process what happened in the past, but that is just it..... the past is the past. However, the past is not the past for parents who lost a child to cancer or probably in any other capacity. A part of us will always live in the past. The past is our present and was our future! We can't just close the book on our current life, and move on. Because moving on (another term I DESPISE!) would mean that we left Mattie behind.

I also have found that as time 'moves forward' (which is a term I seem to be able to tolerate more than moving on) I cling to memories and to the way things were. Some days I want things to go back to exactly how they used to be! If only one could turn back the hands of time and rewrite the future! Certainly not only do I wish Mattie were alive, but at times during the grief journey I would like friendships and aspects of my life to revert back to the way they used to be. The changes we have been forced to deal with are overwhelming. Naturally my wishes are unreasonable, since my friends are changing as their children grow older and Peter and I do not travel in the same social circles as they do mainly because we are missing the important person who connected us to other families..... Mattie.

Parents who lost a child to cancer are trapped in a way. We are trapped with our memories and living in the past. The mind plays tricks on you, things you thought you couldn't forget, you can! It takes work to remember Mattie's smile, voice, and other subtleties, to keep Mattie's spirit alive, and each day I walk a fine line of living in the present on one foot and the past on the other.

Next week will mark the five year anniversary that I began writing Mattie's blog. A blog which is still read daily by hundreds of people! I think that is a testament to Mattie's life, but the blog serves as my memory of my journey as a mother. Are there days I rather not sit down at the computer to write? Perhaps, but after five years, it has become second nature to me, like brushing my teeth. It is part of my daily routine, it is my time to reflect upon Mattie, how he touched our lives, and it is my vehicle for integrating the past into my present daily life.

Monday, July 15, 2013

Monday, July 15, 2013

Tonight's picture was taken on July 14 of 2007. There was a lot going on here. You can see Mattie's huge swimming pool on our deck. It practically took up over a third of the space we had! You can also see Peter and Mattie's swimming trunks hanging in the background (after having gone into the pool that day), and of course without fail.... Patches was in on the scene. (sitting on top of Mattie's sandbox). If we were outdoors, so was she!!! If you look closely you can see two special glass goblets on the table. One is blue and the other is red. These were my paternal grandmother's. My grandmother got these glasses on her wedding anniversary, and when my grandparents died, I inherited them. At one time our wedding anniversary tradition was to take these goblets out and toast another year together.


Quote of the day: The heart of marriage is memories; and if the two of you happen to have the same ones and can savor your reruns, then your marriage is a gift from the gods. ~ Bill Cosby


I have known Peter practically all of my life. Yet yesterday I learned something NEW about Peter. After talking to Peter's mom today, she too did not know my news! So it is a NEW fact for all of us. After going out to dinner yesterday and having a wonderful blackberry shortcake, about 40 minutes after that Peter developed a raging fever and huge red blotches all over his body. He literally was turning purple. When Mattie was alive, I had Benadryl in our home, but I did not have it on hand last night. So I walked to our local CVS and got Benadryl in hopes that what I was seeing was an allergic reaction. Not everyone responds well to this antihistamine. Mattie certainly didn't. Instead of making him sleepy and less congested, it made him agitated and hyper. Thankfully Peter isn't like Mattie in this sense and that within an hour of taking it was looking much better. I will not forget his purple coloring anytime soon!!! So NO blackberries for Peter!!!

I had the wonderful opportunity to have lunch today with my dear friend Junko. My faithful readers may remember that Junko was the kind soul who would visit me in the Hospital and not only bring me treats, but would also give me neck and back massages. I did not know if I was coming or going some days in the hospital and the level of intense stress I was living under was incredible. It was funny, when the hospital staff saw Junko giving me a massage, they made every effort possible not to bother us. They felt I needed this brief reprieve and attention. They verbally stated this on many occasions! Junko's attention and kindness will never be forgotten. Over a long lunch we talked about so many things and while talking I realized that I do better or thrive under a crisis or when I am directly providing care to someone. I am not sure that was the case when Mattie was alive and healthy. However, after Mattie's cancer and then death, I have learned this aspect about myself. I wouldn't say that anything in particular brings me happiness, or this is not a word I care to use anymore, but I do know that I get more fulfillment out of life when I am directly helping someone. It is almost as if without a crisis and a direct link to being needed by someone, I live a pretty grey or dull life emotionally. However, what jolts me out of this grey purgatory is direct service. This maybe why I was inclined to become a mental health professional in the first place..... it is how I am hard wired.  

Later this afternoon, I received a very touching email from my college roommate and friend, Leslie. Leslie is on a beach vacation with her family this week and she wanted me to know that today a beautiful swallowtail butterfly followed her and her son to the beach. This was an odd sighting to her since she rarely sees such butterflies by the beach and especially on such a HOT day. When Leslie got to the sand and her beach chair, she pulled out her phone and saw that today's date is July 15, or in other words our anniversary. With that Leslie sent me an email with good wishes. The butterfly triggered her memory but it gets better. While sitting on the sand, after having sent the message to me, this same butterfly which she saw on the board walk reappeared on the beach, as almost to deliver her a message. Butterflies remind Leslie of Mattie, me, and Peter, and to her the message delivered by this fluttering beauty was "thanks for thinking of my mom and dad today!" I found Leslie's message TRULY touching. Leslie wanted to know if other Mattie supporters had butterfly sighting today as well! I told her I didn't know, but I am very happy that our friends think of Mattie each time they see one of these special creatures.

I would like to end tonight's posting with an anniversary message from my mom........................................
My mom wrote, So many political movements are symbolized by slogans that any student of history can recall. There was the Square Deal, the New Deal and the Great Society, none of which lived up to their expectations although the idealism behind them started out with good intentions. Nonetheless, they did advance the cause of activism to benefit the interests of society but the reality is that in implementing a Utopian dream something always gets lost in the translation.

But the other day as I read your blog, a comment made by one of your associates working with you on developing national psychosocial standards of care to be applied to childhood cancer patients and their families caught my attention. They described you and Peter as the "Real Deal!" It is a slogan as applied to you that I can really get behind. I fully support your colleague's sentiments one hundred percent and I am in total agreement, no qualifications, ifs and buts! I regret that I did not say it first but I know I will be the first to run with it and apply it to your time with Mattie.

You two are the "Real Deal" for having given Mattie a lifetime of wonder and happiness in seven short years. As a witness to the process from the day he was born, I can say you thoughtfully showered him with love, guidance and understanding that nurtured his uniqueness so that he could become his own version of the "renaissance man" as the impressive little boy that he was. You gave him the canvas, paints and brushes of life to create his own space and fill it with meaning. You made sure as he took every new step in his development that you found the right schools where he could find lasting friendships and interact with teachers that shared your philosophy of life, nurturing respect for all others, making allowances for differences and appreciating nature and conserving its beauty. In all this you were successful and he lived each and every day in happiness feeling safe and secure. For him, every day was a new adventure and he looked forward to the next day with excitement and anticipation. Even in the hospital when he was very sick, he took direction from the two of you and with every ounce of energy and spirit, he used every reprieve from pain to focus on positive pursuits like building an amazing Lego project or tackling another challenging magic trick!

For Mattie you two were the "Real Deal" and today for many afflicted childhood cancer patients, you remain the "Real Deal" because you prove that with your commitment to their future, you are made out of the "Right Stuff!" Happy Anniversary and many more!!!
 

Sunday, July 14, 2013

Sunday, July 14, 2013

Tonight's picture was taken in July of 2009. Mattie was sitting at the clinic's art therapy table. The girl observing the action is Mattie's friend, Maya. Maya was the only same aged friend Mattie had at the Hospital. The adult sitting at the table with Mattie is Bob Weiman, or as my faithful readers know this is the "Magic Man." Bob was Mattie's head of the lower school and also an amazing magician. Throughout the year Mattie battled cancer, Bob came to the hospital and our home and took Mattie under his wing. Mattie learned all sorts of magic tricks. Magic was therapeutic for Mattie. It made him feel unique and that he possessed skills others did not have. Magic gave Mattie an outlet for others to interact with him, which was challenging since as Mattie's battle progressed, Mattie became more remote and reclusive. In this photo Mattie was performing the famous ring trick. This had to be one of my favorite tricks Bob taught Mattie. It is actually a hard trick to execute, but Mattie got it immediately.


Quote of the day: We are not the same persons this year as last; nor are those we love. It is a happy chance if we, changing, continue to love a changed person. ~ W. Somerset Maugham

Despite the heat, Peter and I got up and out today. We went for a walk this morning and decided to also go out for an early dinner to celebrate our wedding anniversary, which is tomorrow. There were aspects of today that were absolutely hysterical. Since Peter's car is still in Boston, we are driving around this weekend in my car. I decided to drive today and Peter was the passenger. This is very atypical for us and Peter's reaction was an absolute riot! It was a riot because he LOVED being the passenger. He was checking out the sites all around us, relaxing, listening to music, and the list went on. He had me laughing and apparently he now tells me that he wants me to do all the driving in the future. I don't think so! I don't like driving as much as Peter, but I got his point. Some times it is nice to be the passenger. That way one doesn't have to worry about traffic, directions, and so forth. Hearing Peter's commentary about DC's Memorial Bridge and even the Lincoln Memorial was fascinating. These are things I see all the time, but for him he got to see the details that of course get missed when he is driving behind the wheel.

Maugham's quote I think is very revealing and quite accurate about marriage. Each of us changes year to year. Nothing stays the same. That is even under the best of circumstances. However, I think having a child develop cancer and then die takes this quote to an absolute extreme or a whole new level. When Mattie developed cancer and then died this permanently altered me and Peter. These aren't little or subtle changes either. They are actually life altering changes and these changes are hard to accept within myself, much less accept the changes within Peter. Being married has its ups and downs, its good times and bad, and naturally its struggles. However, unlike what Maugham is implying, I don't think it is "happy chance" that enables us to continue loving the "changed" person. In fact it isn't chance at all. Rather it is compromise, hard word, listening, empathy, love, and understanding. All of these are the cornerstones that lay the foundation for a lasting relationship..... NOT chance.

Losing a child to cancer is a HUGE test on a marriage, which is why so many couples have great difficulties together after such a tragedy. I am not claiming to have any answers here, but I do freely admit that Mattie's death has changed us and the key for us is to continue to grow as a pair with these changes. Which isn't easy, because within each of us we constantly see Mattie, we remember our moments as parents, and we also have to confront a future without raising Mattie. These are our harsh realities which we must face daily and therefore finding the strength, courage, and love to navigate these waters can be treacherous. Typically for us there isn't a lot of laughter any more in our lives, but today there were aspects of absolute comedy. This lightness in a way is to be celebrated and the fact that we can find it together after all we have seen and experienced is a testament to our long lasting friendship.