Tuesday, September 11, 2012

Tuesday, September 11, 2012 -- Mattie died 157 weeks ago today.

 
Tonight's picture was taken on August 6, 2009. The day we found out that Mattie's cancer was terminal. It was a long day for us, and this picture captures a lot in many ways. Peter and I had just come back from a meeting with Mattie's oncologist. While we were in the meeting, Mattie was playing in the clinic, and Kathleen (pictured in pink with flowers), one of his outstanding HEM/ONC nurses from the inpatient unit, came down to also provide company and support. I honestly did not know if I was coming or going that day, and yet Mattie was first and foremost a child and wanted to show us what he just created at the art table in clinic. You can see Mattie was assessing us and our reactions. I held it together, as I always did in front of Mattie, but inside I felt as if I was dying. On the 11th anniversary of September 11th, I can't help but pause and feel for the thousands of families torn apart by this National disaster. Mattie did not die in a terrorist attack, but his death gives me great insight into how a loss of such magnitude can change an entire person's life and that of his/her family.


Quote of the day: 9/11 was a reminder that the bonds of family can be severed in an instant. They are essential, crucial, valuable, and fragile.  ~ Peter Jennings


Eleven years have passed, but the tragedy of 9/11 remains fresh in my mind. I began watching tributes and remembrance specials on TV this past weekend, and I continue to be in amazement over the emotions that such a nightmare evokes. It is quite possible to feel anger, hatred, disgust, hopelessness, fear, sadness, and even hope all at one time. The level of devastation is so profound and how survivors live with the memories of what they saw and experienced is beyond me. I imagine for them each day is a struggle, with many lasting physical and psychological side effects. For the survivors, and every family that lost someone dear on September 11th, my heart goes out to them.

Please know that I have great respect for all the first responders.....firefighters, police officers, medical personnel, and good Samaritans who worked under horrific conditions to save lives 11 years ago. When I got up this morning, in my email inbox, I received a message from the National Parks Service regarding the memorial site in Shanksville, PA. The location where United Flight 93 went down. I attached the video (https://myaccount.nationalparks.org/sslpage.aspx?pid=438&erid=15334497&trid=e375694b-c8d4-42d2-9d81-b99c1c4742df) that came with the email in case you wanted to see it. Flight 93 had 37 passengers and 7 crew members on it that day. I can only imagine the horror of being on that hijacked plane, and then while calling loved ones from the plane, passengers and crew learned that a massive suicide mission was well underway and deduced that the plane they were on was next. I believe that what makes America so special is its spirit, drive, and determination. The passengers and crew abroad flight 93 had two choices, they could remain calm and still and abide by what the terrorists told them to do, or they could fight back and try to divert the plane from hitting another major building and consuming more lives. This isn't an easy decision, and certainly if these people decided to do nothing, it would have been more than understandable given the harrowing and life threatening circumstances. But there is a very powerful message that we received from these Shanksville heroes, and that message is we on the ground were worth saving. They gave up their own lives to protect us. This incredibly selfless act of courage should never be forgotten, they weren't fighting for their family and friends that day, though I am sure that was in the back of their minds, but I imagine they made a decision that if they were going to die, they were going to die with dignity, respect, and honor.

When I went onto the National Parks website and clicked on this link (http://www.nps.gov/flni/photosmultimedia/virtualtour.htm) to the pictures of the passengers and crew, it made this tragedy incredibly real for me and helped me understand exactly who were these brave men and women aboard Flight 93.

We can all remember (assuming we were born at that point), where we were on September 11, 2001. I was home (keep in mind I live in Washington, DC, a stones throw from many of the monuments) and preparing for my classes that I was teaching later in the day. By that point I was two months pregnant with Mattie and when I watched this devastation on TV, I felt paralyzed. Peter was working in Virginia at the time, and he literally got in the car and drove INTO DC! Keep in mind that there was a mass exodus OUT of DC, yet Peter was trying to get back into the city and his description of the chaos he was seeing with people coming out of the city and the isolation of coming into the city is still overwhelming to me even today.

I was saddened to see when looking at The Washington Post today (in print, not the on line version), there wasn't a cover story on 9/11. In fact, I had to really dig through the paper to see any coverage of it at all. Why is that? I honestly do not know how I would react to this if I lost someone on 9/11, but what I have come to understand is that grief and loss is about REMEMBERING and not discussing it and making this visible in a newspaper caught my immediate attention in a negative way.

Monday, September 10, 2012

 

Monday, September 10, 2012

Tonight's picture was taken in December of 2008. By this point in Mattie's treatment he had completed all of his limb salvaging surgeries. Naturally the date confirms to me that this was correct, but even if the picture wasn't dated I would know by what Mattie was wearing. After Mattie's second limb salvaging operation, I bought him adaptive clothing. Literally his pants had Velcro seams, so there were no buttons or zippers, and he did not need to step into his pants (which was virtually impossible to do given the host of disabilities he was contending with). Pictured with Mattie is Tricia. Tricia, as my faithful readers know, is an incredible HEM/ONC nurse and one of Johnson and Johnson's Finalists for Outstanding Nurse of the Year. Yes Tricia was Mattie's nurse, but she also looked out for Peter and I in the Hospital, and quickly became a member of our family. Tricia got and understood Mattie and she knew how important his play and building was. If he was in the midst of doing something, she worked around him. This picture captures what I am trying to describe. Notice Tricia's heavy blue gloves.... they are gloves one must wear when administering chemotherapy. At least the highly toxic chemotherapy Mattie was given. Certainly it would have been easier if Mattie was sitting on the bed, but instead, Tricia came down to Mattie's level, and did not skip a beat. The love went both ways, and Tricia and I both distinctly remember one day in the PICU, as Mattie was coming back from the playroom, he called out Tricia's name in the hallway. When Tricia came over to him, Mattie announced... "I Love You!" Frankly neither one of us was expecting this sentiment, but I could tell, it deeply touched Tricia's heart. As we reflect on the passing of Mattie, it would be impossible not to reflect and remember the beauty of Mattie's Georgetown family, of which Tricia is top on our list.  


Quote of the day: Logic will get you from A to B. Imagination will take you everywhere. ~ Albert Einstein

As is typical, the days that follow a major milestone are always problematic for us. Milestone dates in a way seem to re-open wounds, wounds which have never fully healed to begin with. Sometimes when feeling so down and depressed, it becomes very easy to just want to stay in bed or shut off the world. A world which I already perceive as cruel, unfair, and at times unbearable. With the anniversary of September 11th being tomorrow, if you doubt my sentiments, all you have to do is stop and reflect on one of our Nation's greatest tragedies. This tragedy magnifies on a grand scale exactly what I am saying about life.

Sometimes when feeling this way, I have to let go of logic and reasoning. Not unlike what Einstein expressed, and instead allow my imagination to take over. To become re-grounded in the world and to see aspects of its beauty (and thereby use my imagination), I go to Roosevelt Island. Today, Peter and I walked the Island and below I will share photos of our time there. The ironic part about today's walk is that at various points we just stopped walking and stood still for minutes on end. When we stopped moving, it was as if we became one with the nature around us. I observed SO many birds, in fact at one point I felt as if I was in a scene from Hitchcock's movie The Birds. We had birds watching and observing US from every angle, rather than the other way around. It was a real lesson today..... when we stopped moving, that is when we observed incredible sights! For example, while I paused on the boardwalk, a deer literally jumped out in front of me to cross over the walkway. I was down right stunned! If we went to the Island to simply walk to exercise, we would have missed all this incredible beauty that surrounded us today.

Last night, I emailed my mom and Karen about the fact that Peter received few to no emails or correspondence about Mattie's death and anniversary. Most people do write to both of us, but the emails come directly to me. I tried to put myself in Peter's shoes, and when doing this I too would be hurt by this. My mom and Karen had their own take on this as well. Later in the evening my dad wrote Peter the following email................... 

"I'm NO writer! If it's not in bullet format my writing style is severely handicapped.. I try to leave all my dull and tiresome prose to as brief a communication as I can. Therefore September 8th comes and goes each year--and I remain silent. I do not find it easy to express my sorrow for the anguish you must endure on this special Anniversary each Year. Be assured my caring and thoughts are with you. I cannot express my grief and caring so I take the easy way out. I remain silent since there is no way I can commiserate my sorrow, sympathy and understanding of the torment you must go through each September 8th and probably each day of the Year."

I asked my dad whether I could post his comment here tonight, because I think it is of value to highlight. Mainly because it provides insights into the topic of SILENCE. The old saying that silence is golden..... well FORGET IT! Silence is very easy to misconstrue for a griever. It is interpreted in my mind as Mattie has been forgotten by you, that his loss and the impact of his loss isn't worth talking about, and worse it means that you aren't on this journey with me. My comments on silence do not pertain to my dad, since I know where he stands regarding Mattie and he conveys this to us often. However, even though he expresses his feelings to us on a regular basis, he decided to stay silent on Mattie's anniversary because of the profound nature of the loss. He did not know what to say! Which is what I suspect perpetuates silence for many who know us..... silence occurs because one is feeling awkward, one has the fear of making things worse for us, and saying the wrong thing. All these fears are well founded and I know all too well that it is easy to say the wrong thing to a griever, I get that, but I think it is far worse to stay silent. I also think it is harder for people to reach out to men who are grieving, and Peter isn't the only male to be facing these issues. Our society has stereotyped men, that men do not need to express feelings, they need to be tough and strong, and some even think that the death of child affects a mom more than a dad. But again, all of these things are myths. In fact, I would go on to say that I have many more socially acceptable outlets to vent my grief than Peter does, and that is simply because of my gender and what society deems NORMAL.

Also today, we received a beautiful email from Tricia. Tricia also expressed that it was difficult to write to us and wasn't even sure what to say over this profound loss. Yet, despite how my dad and Tricia felt, they both wrote, and both messages were so appreciated and caused us to pause and reflect. It takes great courage to express one's feelings, and to even allow one's self to be vulnerable to share these thoughts and feelings with us. Nonetheless, it is in this vulnerability that true and meaningful bonds occur between people.

Tricia wrote, "As we have recently come upon the 3rd anniversary of Mattie's passing, I still find it extremely difficult to believe, accept or at times, even address. I often have to remind myself that it really did happen and between the loss of the most special little boy I've ever had the privilege of knowing and the loss of my two brothers most recently, I find myself in a whirlwind of questions...why do these losses have to happen, why to us, it could've been anyone else but why our precious Mattie, or my 'Big" and "Little" brothers or my special sister back then? I remember when my faith was so strong, but these losses challenge our faith and I find myself wondering about the many unanswered questions that I can't seem to let go of. I still love to care for the children and it's not unusual for me, in my everyday work and life, to see and feel Mattie's presence. Your mother sums it up perfectly...for he is the wind that blows, the sun that shines and the moon that glows and he is all the goodness that surrounds us..everyday... and though this is a wonderful thing...it will never be consolation enough for having lost any of them. I would never say I could ever understand how you must feel, but I know you understand how much I loved Mattie, so as we reach another year gone by without him, I want you both to know I am thinking about you and sending all my love and support to you always."

Along our walk on Roosevelt Island, Peter captured this sight. I entitle it, "The Beauty of Roosevelt Island."

Everything along the boardwalk today was green and beautiful. It was so special to be there when it wasn't crowded with people.

When we stopped for a few minutes and looked up, the first thing we noticed was a Red Bellied Woodpecker. A rather funny name, since its belly is NOT red.

We spent a great deal of time looking at this huge bird in the tree. We were perplexed by this bird because at first glance it looked like a Robin. Yet it did not sound like a robin, so I don't know. But he was glorious to observe. While we were watching him, there had to be at least 50 birds surrounding us, watching us, as we were watching the Robin.

A beautiful Grackle!

As we were walking along the board walk, I commented that the sun was strong and lovely, perfect weather for a lizard. Low and behold, a Blue Tailed Skink appeared. Peter wanted to know if I could predict the lottery with such accuracy.

As we stared at these ducks today, Peter was sure these weren't mallards. He is correct, I looked them up and they are American Black Ducks. A first for me! Their feathers were GLOWING in the sun!

As we were leaving the Island, this mud turtle came up to say hi. He was a beauty, and I loved his red coloring. Mattie was a turtle fan, and he would have absolutely loved each and every sight we came across on the Island today.

 

Sunday, September 9, 2012

Sunday, September 9, 2012

Tonight's picture was taken in June of 2008 at Mattie's end of year kindergarten party. I fortunately attended this party and I was able to see Mattie having a great time with his friends. This threesome was very special to me: Charlotte, Mattie, and Campbell. As Charlotte told me, this threesome was going to go to college together and even be roommates.


Quote of the day: He that conceals his grief finds no remedy for it. ~ Turkish Proverb


The day after Mattie's third anniversary of course brings out all sorts of emotions. Our emotions aren't as volatile or explosive as perhaps they once were, now they tend to be more inward. In many ways these inward emotions are hard to live with, because they wear you down and are quite depressing. So I would say for the most part our day was clouded with sadness and depression.

Peter and I reflected on how we acknowledged Mattie's anniversary for the past three years. The first year, we had a tree gathering ceremony at Mattie's school in which Mattie's friends and our friends were in attendance. We all placed origami cranes on Mattie's tree and then I treated those in attendance to the kind of cupcakes Mattie loved, all of which had brightly colored frosting. That was a nice gathering, but a hard one for multiple reasons. One reason I won't do this again is because it was very hard for me to see the children and their parents come and go to this event. For some in attendance, this event was another activity on their calendar, and for us, it was much more than that. It was very evident to me that given schedules, right after the tree gathering, families were running off to the next activity. Naturally this is part of life, and I get that, but I don't have to get it on Mattie's anniversary of his death. It took me a long time to come to peace with that because I felt like I was the one being difficult. Upon reflection, I realize I am not being difficult or not understanding and caring of others, on the contrary, I spent a great deal of time doing just that while Mattie was ill, and now on difficult days for us, I have to think of what is in our best interest. Because at the end of the day if a public forum is only going to further upset and depress me, I don't need to add gasoline to an already well lit fire!

For Mattie's second anniversary, we went out to lunch with friends. This was a less public forum, which was better, but as time moves on, Peter and I feel as if the only ones who truly need to reflect on this day is us. We do not want to pressure others to feel obligated to go through this journey with us, which is why we do not schedule anything on September 8th. Honestly though I do not know what the answer is because spending the day alone does compound the isolation, and we reflected upon this today. Actually a lot of hurt has resulted from Mattie's death, Mattie's battle, and our hopes for how others in our lives would continue to be there for us. Loss is quite pervasive in our lives. Cancer has changed us and our relationships with others, and therefore the ramifications of cancer may appear to be over for us, but they truly aren't, the ramifications are now more subtle. Cancer influences how I see everything, how I experience everyone, and my expectations for how things should be.

 

Yesterday my friend Tina sent me this picture on my Blackberry. When I first saw the picture, I have to admit I was disoriented. I wasn't sure where this beautiful monarch was sitting. It turns out that this butterfly flew right into Tina's lap and sat there for 20 minutes. It is so unusual for a butterfly to do this, and I took this as a sign!

 

Since this butterfly decided to visit with Tina for a while, Tina had the opportunity to talk with others around her about the significance of this creature. As I told Tina yesterday, to me this was a sign from Mattie and she was our messenger. I did not see one butterfly yesterday, yet I do not believe in coincidence, therefore, from my perspective this butterfly was meant to land on my friend. I am so happy she shared it with me and captured it through a photo.

 

Saturday, September 8, 2012

Saturday, September 8, 2012 -- The third anniversary of Mattie's death

Tonight's picture was taken in June of 2008, a month before Mattie was diagnosed with cancer. We were absolutely clueless back then, because Mattie appeared to be the picture of health! As you can see here, Mattie was posing with his "girlfriend" Charlotte at one of the canals in Georgetown. That particular day, Ellen (Charlotte's mom) invited Mattie and I to go with them on a canal boat to ride through the locks of Georgetown. Mattie and Charlotte had just completed a year of school together and to some extent I think the children were used to seeing each other on a regular basis, so the summer was a hard transition for them. Mattie and Charlotte became friends on the first day of kindergarten, they were just drawn to each other. From my perspective, Mattie and Charlotte brought out the best in each other, and it is rare to find such a special friend. One thing Mattie could do was make Charlotte laugh. I can still hear Charlotte's laughter in my head, it is the kind of laughter that makes you want to just laugh yourself. In the summer of 2008, Mattie and Charlotte also enrolled in a tennis camp together. It was in that camp, that I learned about Mattie's arm pain. In fact, if we didn't identify Mattie's cancer in July of 2008, then I am quite sure by the time the issue did present itself it would have been too late to even treat it. Mattie's cancer was aggressive and fast moving, and thanks to this tennis camp, I feel it identified the arm issue sooner and enabled us to have 15 more months with Mattie.


Quote of the day: Parting is all we know of heaven and all we need of hell. ~ Emily Dickinson


Peter and I want to thank so many of you for reaching out to us today. We appreciate the Foundation contributions, emails, cards, photos, and text messages. I think the hardest thing about going through such a loss is feeling like you are going through it alone. We know we are different, each day reminds us of this, but milestone days are definitely worse. Nonetheless, I have to say that you would be amazed by the impact an email or text message has on us! Even the simplest of messages are the greatest of gifts. It is the silence that is truly painful and troubling.  

On tonight's blog, I posted a link to a video entitled (at the end of tonight's posting), "Why B Normal?" This video was sent to me by someone I love and hold dear, one of Mattie's art therapists, Jenny. It is my hope that after reading my words tonight, you will consider watching the video. The video is about 7 minutes long. The first 3.5 minutes are fine, but it is after that point, that her words resonated with me. The speech is given by a mom who lost a 12 year son in a car accident. The premise of the video hits home for all of us, because she discusses how as children we all aim to be SPECIAL. We want to make a mark on the world, yet when dreaming of her future, she never imagined that what would make her stand out from others is being the mom of a "dead child." She describes the world now as foreign to her, and that she feels like an alien. What she is expressing is not news to me, instead I can relate to her feelings wholeheartedly, and unfortunately these feelings of being different will remain with us for the rest of our lives. Talking about these feelings is normal, having them linger is normal, and trying to process them and find a way to live with them are also normal. What isn't normal is when someone wants these feelings to disappear for me, to deny that this is my reality, and worse to not want to hear about them!

Last night, Peter and I went out to dinner with the moderator of the palliative care panel that we have served on, as well as with another couple who lost their 5 month old daughter five years ago. Not to cancer, but to a genetic disease. When this mom heard that today was Mattie's 3rd anniversary, she was absolutely stunned that we were functioning enough to go out to dinner last night. She said she wouldn't have been, and she and her husband told me that they have appreciated listening to me at the palliative care panels. Because they knew their daughter for 5 months and her loss is excruciating to them, but they couldn't imagine what it would be like to lose a child like Mattie who was seven years old. A child who was healthy for so long and whom they had a relationship with. In fact, this couple said to me that when they hugged me after the first palliative care panel, they literally could feel my pain through the hug. I thought that was a very telling statement.

 

Earlier this week, I went to Target, one of Mattie's favorite stores, to buy hotwheel cars. I then wrapped plastic like wire around each car, so that we could hang them on Mattie's tree today. Mattie LOVED hotwheels and matchbox cars. He had HUNDREDS of them! So I felt it was fitting that his passion for cars be incorporated onto his oak tree.

 

Today was an incredibly powerful weather day. Since Peter alerted me to the storm that was coming our way, we decided to visit Mattie's tree earlier in the afternoon. Mattie's school class planted a red oak tree on the lower school campus in 2010 in his memory. Since Mattie's ashes sit in my living room, the tree is the only memorial site we really have to visit. When this tree was first planted it was about my height. Now the tree stands at about 14 or 15 feet tall. It is an incredible tree, because in the fall and winter its leaves dry up and turn red, but the tree NEVER sheds its leaves. It is never barren. Frankly it is amazing, that these dried leaves just seem to disappear in the spring, and new leaves begin to unfurl.

 

Mattie's tree is filled with all sorts of things such as: an acorn bird feeder from my in-laws (in which nut hatches are housed!), a beautiful wind chime, origami cranes created by Junko and her mom, fuzzy bugs of all kinds from my friend Tina, a beautiful red butterfly from our friend Erica, cello-wrap butterflies that I made for Mattie's 10th birthday, red pine cone Christmas ornaments, and now toy cars. Can you see the red and purple ones blowing in the wind here?

 

 

In this picture, you can see my cello-wrap butterflies, the acorn shaped bird house, and today's addition, CARS!

 

In the midst of activities we did today, Peter could tell I was edgy, snappy, and having my moments. Which is why I suggested we go back out and walk Roosevelt Island. However, that wasn't meant to be. Why? Because we got rained out, with 70mph winds. We literally sat in the car amazed at what we were seeing. To me it was a sign that even the heavens were crying over our loss.

 

Being that today marks the third anniversary of Mattie's death, I can assure you that Mattie's death will always be fresh in Peter's head and within mine. For five hours (2am to 7:15am), Mattie fought death on Septembr 8, 2009. He was agonizing to breathe, and the amount of pain medications he was on was probably over the legal limit for a child. I did not report this fact at the time on the blog, but from my perspective Mattie's nurses and physician made very ethical and humane decisions. In fact, Mattie did not want to die, and it was only after Dr. Shad had propofol administered to Mattie, did his body shut down after an hour. Dr. Shad told me that in her 25 year career, she has only had to use propofol one other time to assist in the death of a child. To me this speaks to Mattie's strength, fight, and courage to want to live. If you would like to read my posting from September 8, 2009, please go to: http://mattiebear.blogspot.com/2009/09/mattie-lost-fight-today.html

 

I end tonight's posting with four messages. The first message is a reflection from my mom. The second message, our family considers a very special gift from Charlotte. Charlotte wasn't prompted to do this, which is what makes her actions and feelings probably one of the greatest gifts I could receive today. The third message is from Kristen, Mattie's oncologist, and the final message is from Cathy. Cathy is a mom of a child who is actively fighting cancer at Georgetown. In fact, Bridget (Cathy's daughter) and Mattie were fighting cancer at the same time, which is how I got to know this very special family.

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The Miracle of Mattie -- by Virginia R. Sardi

The miracle of Mattie will never die though he is no longer with us. His energy and spirit continue to live on in the minds and hearts of those who were lucky enough to be touched by his presence. If you knew him, and can remember his healthy, toddler days when his creative, zany and zestful joy of life was fresh and spontaneous, you witnessed poetry in motion and a boy who lived life to the fullest appreciating every moment allotted to him. Though too brief, his life and the way he lived it are to be remembered with awe and reverence because he never gave up on himself, though the odds were powerfully against him, and became a symbol of courage and wisdom beyond his years showing others the way to use the finite time allotted to them on this earth to make the world a safer and better world for children like him who were to be denied the future most of us take for granted. This is a remarkable legacy for a boy who died at age seven whose friends still think of him three years afterwards and whose name and story fill many a heart with compassion and regret for what might have been if fate had not intervened and called him home before his time. We will never be consoled those of us closest to him and will never understand why he had to be taken from us. His memory, laughter and smile are never far from our hearts. We hear him in the wind, see his face in the moon and feel the incandescence of his spirit in the beautiful stars that appear in the sky. Our love lives forever and inside every chamber of our hearts, you will find Mattie, never to be forgotten, in his own special place on this earth!
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Ellen (Charlotte's mom) wrote, "I wanted to let you and Peter know about a very special thing Charlotte did today. As she is starting 5th grade, one of her first assignments is to decorate her journal with pictures that describe her and symbolize her. Charlotte worked hard at finding 10 photos that describe who she is. She was determined to have photos of books, a piano, soccer and the beach - as those are her favorite activities. Then she was searching for the perfect picture of her and Shannon (Charlotte's sister), and her with Tyler (Charlotte's brother). She also planned to use a photo of Nelson (Charlotte's dog) and J.K. Rowling (her favorite author). As she was completing the project, she was busy on her laptop looking through photos. When I asked her if she was finished yet, she told me that she would be finished when she found a picture of her and Mattie. She was searching for that photo (the one that is also on her bulletin board by her bed) of her and Mattie in Georgetown. They are so relaxed and happy, about to embark on the Canal boat trip that we shared on that June morning after kindergarten finished. I am so happy that Mattie is still in the forefront of her thoughts. He will be there with her, smiling on the front of her journal as she embarks on her journey of 5th grade. Our family is very thankful to have known Mattie. He will always be in our hearts."

 

Kristen (Mattie's oncologist) wrote, "At 7:15 in the morning on September 8, 2009, I sat in the airport in Detroit, waiting for our flight to take us back to DC. I felt drawn to call the PICU at Georgetown and to talk to Mattie's nurse. When I reached the PICU I learned that Mattie's nurse was with him and she couldn't come to the phone, that he had just passed away. There are moments in my life that I will never forget. Moments that I think of and I am brought back in time. That moment, in the airport at 7:15 on September 8, 2009, is one of them. It will forever be etched in my heart. I will never know your pain. But I grieve with you. Today...three years later. Thinking of you both especially today and always."

 

Cathy (a fellow mom fighting childhood cancer) wrote, "I  know that every day is difficult for you but I can only guess how much more difficult it must be on days like this anniversary. You are in my thoughts often, not just for the terrible loss you have suffered but also for the tremendous compassion you have shown us and other parents who must watch their children deal with this awful disease. Both of you have a grace and empathy that shine through, even though you hurt inside you do your best to put others at ease and listen to their complaints. Mattie must be very proud of his parents!"

Why B Normal?
http://www.youtube.com/watch?v=130AmDjaMi0&list=UURBcgEjka1hLBgCeglpEgrw&index=14&feature=plcp

Friday, September 7, 2012

Friday, September 7, 2012

Tonight's picture was taken in August of 2002. Mattie was four months old and he loved to sit on the couch, propped up with pillows. Mattie had a large basket filled with all sorts of small stuffed animals. In quiet moments together, we would pull out each of these animals, and play with each one. Some made noises, others had fuzzy textures, but each one provided a different sort of stimulation and entertainment. As you can see though, Mattie was not looking at the animals in this photo, he was looking at me. Mattie kept a close eye on me pretty much all of his life.


Quote of the day: Every one can master a grief but he that has it. ~ William Shakespeare


Today I had the opportunity to go out to lunch with my friend and colleague, Denise. Some of my faithful readers know that Denise is the mom of Marisa. Marisa has run our Foundation Walk bake sale four years in a row, and is now a senior at NYU. Marisa helped me during the summer of 2009, when Mattie was home between hospital visits. By that point, I was out of energy, and my creativity with play was non-existent. Marisa got to know Mattie under very trying circumstances, nonetheless, she found a way to make it work and to connect with him.

Denise and I spoke about a whole host of things at lunch, one being the topic of grief. Denise and I met in graduate school, and now as a licensed mental health professional she works with clients dealing with all sorts of grief. Denise is a daily blog reader and her entire family supports us in so many ways. While talking to Denise, Shakespeare's quote was rolling around in my mind. Because I think one of the greatest issues people who are grieving experience is a lack of understanding and empathy from those around them. Chances are if we were a society which freely spoke about grief and loss, and accepted people for whatever stages they were in along this lifelong journey, my hunch is people wouldn't need to seek out professional therapy. But since it is rare to find these outlets to freely be one's self in grief, the need for the mental health profession will be in high demand with just the topic of loss alone.

I want to be quite clear in my definition of grief. Some people think that grief is the result of a death. However, this is NOT the case. There are all kinds of grief (a reaction to a major loss)..... and there are ALL kinds of grief, because there are different types of losses. Major losses that can produce grief are divorce, accidents, geographic relocation, bankruptcy, dissolvement of a friendship, being fired, and the list goes on. Shakespeare's quote actually makes me laugh, because he was correct..... many people think they can master grief, especially a grief that is owned by someone else. When the grief hits home, one then quickly sees it is indeed hard and, at times, impossible to master!

Before ending our lunch today, Denise used a word with me that resonates with me. It may resonate with me, because I am humanistic in heart and psychological theory, but the word was "AUTHENTIC." She wanted me to know that she feels as if Peter and I live a very authentic life, and this is evident in my writings, my interactions with people, and our work with Mattie Miracle. I appreciated her reflection, because it would be much easier to walk away from the world of cancer altogether, but we don't! Or for me to take on a job which actually pays me for my skills, thereby avoiding the world of medicine and the painful realities that impact children and their families on a daily basis. It is easy to get dejected working in my world, which is why I appreciate the distance Denise has from my world and I value hearing her perceptions and feedback.

Unlike any job I have ever done before, the work for the Foundation is far more emotionally draining and labor intensive. Mainly because it isn't only a job, the Foundation has become my new identity. An identity I haven't asked for, but one in which my life circumstances have helped to create. Nonetheless, the investment in each Foundation task reminds me of Mattie, and therefore, moving forward will always mean that cancer is very much intertwined in my life. I was telling Denise that many people in my life continue to ask me when I will be going back to teaching. The answer is I don't know, I could say never. Or never as it relates to educating people in a formal university setting. With that said, I do know that I use my educational background in different capacities now, and therefore I still consider myself an educator. To me, after Mattie's cancer battle, being in a classroom with undergraduate and graduate students is NO longer authentic, and I have to respect that. I have been approached by a counseling colleague to come to her class and lecture in November about the trauma associated with a childhood cancer diagnosis, and I had already agreed to do this. So if I can occasionally educate others within an university setting, I am open to that, but it is no longer what defines me.

I wanted to share a picture of Tim's orange tie for the day! This one Mattie would have absolutely loved because it has fish and seaweed on it. I told Tim, that one of Mattie's last requests was he wanted a fish. Naturally live animals are not allowed within the hospital. But frankly following rules when Mattie was dying wasn't high on my priority list. So my parents helped me purchase a beautiful red betta fish for Mattie, which Mattie named "Red." Frankly because I did not report about Red on the blog (in fear someone would come and snatch Red out of Mattie's room), I forgot the official name that Mattie gave the fish (if anyone remembers, I would appreciate you telling me!). What you should know was that this fish died several hours before Mattie. To me this fish served as a premonition of what was going to come on September 8, 2009.

I have been emailing back and forth Debbi, Mattie's sedation nurse angel. In her writings, she told me she went back within the blog to reflect on the past couple of Mattie anniversaries. The beauty of the blog is all postings starting back from July of 2008 are still available on this site. So today I paused and went back to the first anniversary of Mattie's death. I included a link below if you are interested in reading about this day. The one thing that jumped out at me immediately was the large presence of our support network. As we move further away from Mattie's death, though the pain is still very real for us, the reality is this is not on the forefront of everyone else's mind as it once was. Which brings me full circle back to the definition of grief. The dwindling of our support network is certainly another major loss, or I should say a loss in a whole list of other major losses associated with Mattie's cancer and death.

http://mattiebear.blogspot.com/2010/09/matties-one-year-anniversary.html
 

Thursday, September 6, 2012

Thursday, September 6, 2012

Tonight's picture was taken in May of 2002. Mattie was one month old, alert and curious as could be. In this picture, Mattie was trying to stare at Peter who was holding a camera and taking a photo. Mattie's little hand was desperately trying to reach up and grab at whatever he felt was in front of him. To me this picture captured Mattie's character, personality, and adorable face in a memorable way.  


Quote of the day: If you have made mistakes…there is always another chance for you…you may have a fresh start any moment you choose, for this thing we call “failure” is not the falling down, but the staying down. ~ Mary Pickford


For those of you who emailed, much thanks! My dad did take a CT scan yesterday and we are grateful that no tumors were found in his lungs!!! In the midst of worrying about my dad, I learned that one of Mattie's wonderful child life interns lost her father yesterday to a sudden heart attack. Her family is devastated and Peter and I reached out to her. It turns out that Lesley let me know that in lieu of flowers her family has asked that people make contributions to the Mattie Miracle Cancer Foundation instead. I was deeply touched by this form of acknowledgement and tribute to the memory of her dad. As Lesley said, we changed her life and had a profound impact on her development. I assure you the love and admiration goes both ways, Lesley and Whitney were an incredibly dynamic duo (as my mom called them), who knew how to relate, appreciate, and engage Mattie while living in the Hospital.  

Mary Pickford's quote resonated with me today, which is why I am posting it tonight. This morning I went to my zumba class, which was excellent as usual, and gets the mind and body working first thing in the morning. However, after class, I stopped by to see my friend Mary, who lives in an assisted living facility. Mary was basically mute for my entire visit, but I am so used to this now. In fact, I probably would be more surprised if during my visits Mary actually talked with me like she once did. Mary's caregiver, Shayla, was with her, and typically Shayla and I land up talking and try to stimulate and include Mary in our conversations. Toward the end of my visit with Mary, I saw Catherine. Catherine is a patient in Mary's facility who I have gotten to know over this past year. Unlike the other patients on Mary's floor, Catherine is much younger and cognitively intact.

Over the past month, I have done a lot of travel, and though I have always made my way into see Mary throughout the summer, I haven't been as good about visiting Catherine. Catherine always enjoyed my visits in the past, and I know she appreciated the mental stimulation. Any case, while I was away I learned Catherine had heart surgery, and today was the first time I have seen her in a while. Physically she looked the same, except for the large incision in her chest. An incision I was quite familiar with given that Mattie had a sternotomy to remove 9 lung tumors. What shocked me about Catherine was her mental state. Catherine no longer knew who she was, that she had surgery, or who I was. In a way I was mortified to see this rapid change and then felt very guilty about not visiting her sooner. Unlike Pickford's quote, some times we just make mistakes and these mistakes aren't correctable. I am quite aware of the fact that dementia would have happened to Catherine whether I visited her or not, yet without visitors and stimulation from the outside world, I have no doubt dementia can take root and grow wildly, as I saw today. Needless to say, seeing Catherine has weighed heavily all day on my mind, and it makes me reflect upon the philosophy with which I try to live my life.... in that it is vital to make time for people, to communicate openly and honestly, and you never get a second chance at making an important connection with someone.  

 

My faithful readers know that on Tuesday, I went for an MRI at Georgetown University Hospital. While in the waiting room, our friend Tim surprised me with a visit. On Tuesday, Tim was wearing a beautiful orange tie and he told me he was wearing the tie in honor of Mattie and furthermore he would be wearing an orange tie each day this week to commemorate Mattie's third anniversary. On Wednesday, Tim sent me this picture. Tim wasn't just saying to me that he was going to wear an orange tie all week, he really meant it. The picture speaks for itself.  

 

This morning, I woke up to a picture of today's orange tie! Tim told me that his colleague at work has been admiring his ties this week, and with that, this gave Tim the perfect opportunity to explain to her why he was wearing orange. It is safe to say that Mattie's memory is alive and well at Georgetown and being shared with others who never even met him.

Wednesday, September 5, 2012

Wednesday, September 5, 2012

Tonight's picture was taken in June of 2002. Mattie was two months old. Contrary to what Mattie's pediatrician told me, I believe Mattie was indeed smiling and trying to communicate to me in this photo. Versus the clinical explanation the doctor gave me which was that infants at this age do not smile, but instead have "gas," which can be mistaken for smiling. Regardless of opinion, Mattie was born ON and alert, and this was something ALL of us agreed upon! 


Quote of the day: I don't remember who said this, but there really are places in the heart you don't even know exist until you love a child. ~ Anne Lamott


My friend Charlie sent me this quote today, and as soon as I read it, it brought a smile to my face. I suppose it did that because I agree wholeheartedly with Anne. Mattie brought a whole new world and dimension to me, and his presence in the world defines who I am as a person, and my priorities moving forward in life. I would admit that I was always a deeply feeling and intuitive person, but the special bond and love Mattie and I shared with each other, opened up places in my heart that I did not even know existed. Becoming a parent transforms any of us, if you doubt this, just ask the parent of a newborn. From the moment a baby is born, regardless of your education, cultural background, or socioeconomic circumstances, this tiny bundle can test you, frazzle you, and love you in ways that you couldn't possibly imagine or READ about. I have had many people ask me whether knowing what I know now (that Mattie would get cancer and die), do I ever regret having Mattie? That may sound like a bold question, but I get the sentiment with which it is being asked. My answer is always.... NO! Mattie was an amazing force in our lives, and though his physical presence is no longer, his beauty and spirit transcend the physical, and they impact me greatly even today.

This afternoon, I met up with my friend Tina for lunch. We hadn't seen each other for at least a month, which is a long time for us. We had a lovely time catching up and sharing stories. As Tina says, she needed her "Vicki Fix," which always gets me laughing. Tina gave me a few gifts at lunch. One was this lovely wooden plaque that I put on my kitchen windowsill. The plaque reads, "Good friends are like stars, you don't always see them but you know they're always there." As you can see my kitchen windowsill has my collection of angels on it, and it is a special collection to me. In addition, I have stained glass suns and butterflies all over this window. Seeing these things make me happy.

 

 

Tina also gave me this butterfly glass paperweight. I placed this paperweight right near the red pottery vase and paper tissue flowers Mattie made for me at the hospital for Valentine's Day (2009). This butterfly seemed to talk to Mattie's flowers, so I paired them together. One of the things Tina and I discussed was Mattie's upcoming anniversary and how I was going to acknowledge that day. No one has asked me this question this year (not to say that others aren't thinking it), and I very much appreciated her willingness to ask it as well as her interest in my response.

 

When I got home, I learned that my dad is ill. I knew he was battling a cold, but even on antibiotics, it wasn't going away. Now other symptoms have popped up, and therefore, I stopped with email and called my mom. Those of you who know me, realize I am not a phone person. So if I am making a call, I therefore deem the situation important. The doctor saw my dad in his office today and ordered him to have a CAT scan, however, the scan hadn't been scheduled yet. Therefore, my dad came home from the doctor's office not feeling well, and seemingly directionless on next steps. Fortunately, my mom is just as aggressive as I am, and after we talked, she mobilized forces and called the doctor herself. From Mattie's cancer battle, I know all too well how the medical system works, and no one is going to advocate for you or a loved one better than YOU. Doctors have a great deal of control over when things get done. If a doctor wants something done immediately, you would be surprised how scans and results can be accomplished in the SAME day. Needless to say, my dad is on the way to the hospital now and hopefully we will know some answers soon. I am not good at waiting for test results, and the geographic distance only compounds the waiting game.

 

Tuesday, September 4, 2012

Tuesday, September 4, 2012 -- Mattie died 156 weeks ago today.

Tonight's picture was taken on May 4, 2002. Mattie was officially one month old. Peter's parents came to DC to visit Mattie, and along with Peter's brother and his children, we all went out together for ice cream. Along that journey Peter's parents gave Mattie this beanie bunny. At one month of age, Mattie was intrigued by this bunny and was trying to focus upon it. Mattie's cousins were small themselves back then, yet they were trying to hold Mattie's hand and engage with him. It was a precious sight and memory. In fact, whenever I see this bunny in Mattie's room now, I am transported back in time, to the day Mattie turned one month old.

Quote of the day: Compassion is to share the pain without sharing the suffering. ~ Shinzen Young


For so many of Mattie's friends, today was the first day of school. Most likely in those closest to us with school aged children, today marks the day Mattie passed away. Why? Because three years ago, September 8, 2009, was the first day of school for Mattie's friends, and Mattie died at 7:15 that morning! I have to imagine the first day of school may always be clouded for our friends. Today does mark the 156th week of Mattie's passing, and Peter and I couldn't help but hear on the TV and the radio the fact that so many returned to school today. Again, something so natural and commonplace, yet it is not tangible for us, but instead is a reminder of our pain and loss.

It seems rather fitting, but I assure you this was by coincidence (since the radiology dept picked the date, not me), that I returned to Georgetown University Hospital today. In essence while Mattie's friends were starting school, I was at the hospital, not unlike how things were three years ago. However, today, I went for a pelvic MRI. To prepare for the MRI, I was unable to drink or eat anything four hours before. Since the test was at 11:30, that meant that I did not eat since the night before. Not a good thing for a headache sufferer! I find if I don't eat on a regular basis, my headaches are worse. The MRI center was backed up today, so by the time all was said and done, I was at the hospital for over three hours. Typically Peter goes with me to an MRI appointment, but he couldn't today given how much time he has taken off from work recently for travel. So I went alone. Again that most likely wouldn't be a big deal for most radiology patients, but for me it is. The MRI area reminds me of Mattie and all his testing. While I was waiting at the center for my procedure to begin, I was surprised by a friendly and unexpected face. Our friend Tim, a Hospital Administrator, came by to specifically find me and sit with me. Tim was wearing a beautiful orange tie today, and he told me he will be wearing an orange tie each day this week in honor of Mattie's passing. I was VERY touched by Tim's gesture and his act of kindness. It meant more to me than I possibly can express to have a friend with me, a friend who I did not have to tell how I felt to be in this waiting room alone. Tim just got it. Just like Aziza, the chief of Pediatric Cancer, also gets why I need to know results as soon as possible. I no longer have the nerves for the waiting game (a game I became very well versed in with Mattie's cancer battle) and Aziza knows this all too well.

To undergo a pelvic MRI, I am required to get an IV hooked up to my arm for radiology contrast. I am used to this drill, since this was my fourth MRI since February. However, what was new today, was on top of this I also had to get an injection of glucagon. This injection had to be administered by a physician, not the tech, because it has to be injected intermuscularly and SLOWLY. So naturally, since this was a new component to the test, I had 1000 questions. Basically the hospital's policy is that glucagon is now given to radiology patients who are getting scans of the stomach, bowel, colon, and pelvic areas. This drugs is designed to diminish intestinal motility making the images clearer. The tech was honest with me and told me that the drug needs to be administered slowly because it can cause nausea. Lovely, my favorite!!! Everyone I interacted with today at the Hospital couldn't have been nicer, and I appreciated their kindness and patient centered care!

However, once I got home, I felt sick to my stomach. This wasn't a feeling that was going to pass with rest. Mainly because I couldn't sit still. Before I knew it, I was vomiting intensely and all I can think of was that this was a reaction to the glucagon. So I was out of commission for the rest of the day, and had to take anti-nausea meds. About two hours after the scan was completed though, Aziza called me to let me know that the masses are stable and unchanged from May's MRI. So this was very positive news today.

I am grateful to my Georgetown Family, who keeps track of me, and stands ready to help me, even though their actual seven year old patient died three years ago. It is no surprise why these individuals touch my heart and why I consider them true medical professionals and friends. It is comforting to know that others can appreciate my fears, feel they are well founded, and aren't afraid to walk through these moments with me.
 

Monday, September 3, 2012

Monday, September 3, 2012

Tonight's picture was taken in April of 2002, days after Mattie's birth. If Mattie wasn't sleeping on my shoulder, then this had to be his second favorite place to sleep..... his car seat! Mattie preferred sleeping upright at all times! Thankfully Mattie was born in the spring time, because he and I spent many hours outside strolling back and forth in his carriage. Mattie LOVED movement and it was only through movement that he would calm down. But it wasn't the kind of movement generated from putting his car seat on top of a washing machine (like I have heard some parents doing) or even driving him around in a car! Those things did not work for Mattie, only natural movement that involved outdoor air worked!


Quote of the day: We can only be said to be alive in those moments when our hearts are conscious of our treasures. ~ Thornton Wilder


Peter and I said our good-byes to his parents this morning and we were in the car and ready to drive home at 9:30am. I was concerned that we would run into traffic and I did not want Peter driving into the night, given that he has a full day of work tomorrow.

The last time we visited Boston, Mattie was with us. So this was our first trip back with just the two of us. It is hard to go from three back down to two, and this loss becomes magnified for me, when I see Mattie's cousins growing and developing. I unfortunately can not imagine Mattie passed the age of 7, but as I observe Mattie's cousins (who are 11, 13, and 15), it makes me wonder. Last night, Peter's family got together and by happenstance began looking at family photos. The kids (our nephews and niece) were intrigued by seeing pictures of their parents and grandparents. Photos are a wonderful documentation of change, evolution of a family, and most importantly of the history of a family. I am happy the kids can look at photos with us and also enjoy doing this, but once again, I found observing this very difficult because it is something Peter and I will never be able to do with Mattie. It is funny how an innocent and everyday activity for others, has become a trigger of all sorts of sensitivities for me. I have no desire to look back at pictures of Peter and I, for me my clock is locked on the time period between 2002 and 2009 (the years Mattie was alive). I am sure there are all sorts of explanations for this, but for now, it is what it is.

Our drive to DC took about 8 hours. Along our journey, we stopped in New Jersey. At the rest stop Peter parked the car, and when I opened the door to the car and looked down, there were three pennies staring at me. Lately I do not just find an occasional penny, instead I am finding them in bunches of 3's. When I see this threesome, I always pick it up, and think to myself that this is a message from Mattie.... that he is thinking of the 3 of us together. 

As we approach Mattie's three year anniversary, I appreciate the emails you are sending me and of course your reported sightings of butterflies! I am honored that you think of Mattie when you see the moon, the sun, pennies, and butterflies!!!

I am signing off for tonight and head to Georgetown tomorrow for my MRI. I have already alerted one of Mattie's doctors about my test, because she is kind enough to give me results before my own doctor. She understands that waiting to hear results is beyond stressful for our family given all that we have survived. Thank goodness for special people like her.   

 

Sunday, September 2, 2012

Sunday, September 2, 2012

Tonight's picture was taken in April of 2002. Mattie was transitioned home from the hospital. It was a challenging transition for us because we quickly learned that Mattie did not like sleeping, and he especially hated lying on his back. This was one peaceful moment my camera captured, but for the most part, Mattie never slept in his crib. For the first three months of his life, he literally slept on my shoulder. I also learned quickly that NOT all babies like to be swaddled!


Quote of the day: A loving heart is the truest wisdom. ~ Charles Dickens


Today was our last full day in Boston. We ventured to Millford, New Hampshire to visit another set of antique stores. While shopping, I have to admit I now notice so many things with butterflies on them. Whether it be on china, pottery, jewelry, and even vintage clothing. I am not sure I would have even looked at butterflies before Mattie died. Now, I am intrigued by all things that are butterfly related!

At lunch time we went to a 50s themed diner in New Hampshire. When we walked in the door, there were all sorts of toy antique cars displayed, old fashioned car seats, and even old gas pumps around the diner. All I could think of at first glance was Mattie. Mattie would have absolutely been in awe of all the cars and the red colors throughout the diner.

For me it is hard to travel without Mattie because I can't help but reflect on things that he would have wanted to do or would have been attracted to. Mattie was a child with a great imagination, lots of interests, and an incredible energy to explore his world. Somehow with his loss, that level of energy is missing from our lives.

On Monday morning, Peter and I will drive back to DC. Being Labor Day, I am bracing for traffic. So tomorrow I will be writing to you from DC! Weighing on my mind is Tuesday's MRI. I am hoping the test shows no changes, but I have to admit each time I go to the Hospital, all I remember is every MRI result I ever got on Mattie. Results that still resonate in my head and heart.