Tuesday, April 26, 2011

Tuesday, April 26, 2011 -- Mattie died 85 weeks ago today.

Tonight's picture was taken in May of 2006. I was the parent helper that day in Mattie's preschool class, and even back then I never traveled without my camera. As you can see in this picture Mattie was wearing his favorite color. He loved the play loft in Margaret's classroom, and up on the stairs with Mattie was his very close buddy, Zachary. Those two were absolutely inseparable in preschool, and they would spend 3 hours in school together each day, and then after school, they would spend several more hours with each other. Needless to say, I think Mattie and Zachary learned a lot about each other and how to cultivate a friendship from one another. These were skills I saw Mattie taking into kindergarten, and somehow I do think if Mattie were still alive today, their friendship would have continued. They had a special bond with each other and could pick up right where they left off. For so many of us, it may take a lifetime to find a friend like that. For Mattie he found it on the first day of preschool.


Quote of the day: You can shed tears that she is gone, or you can smile because she has lived. You can close your eyes and pray that she'll come back, or you can open your eyes and see all she's left. Your heart can be empty because you can't see her, or you can be full of the love you shared. You can turn your back on tomorrow and live yesterday, or you can be happy for tomorrow because of yesterday. You can remember her only that she is gone, or you can cherish her memory and let it live on. You can cry and close your mind, be empty and turn your back. Or you can do what she'd want: smile, open your eyes, love and go on. ~ David Harkins

Tonight's quote caught my attention because it has a griever believe that either you can pine for the loss of your loved one, or you can look at the future and cherish the memories. That it is one or the other, but why can't both happen simultaneously? I find this quote very judgmental, because in all reality, when you have lost a child I think both aspects occur. You feel the loss, you feel empty and also live in your yesterdays. But that doesn't mean these feelings aren't tempered with cherishing the memories and actively finding ways to keep those memories alive.

I met up with Ann this morning and we went for a walk. We haven't been able to do this together for quite some time. For those of you who have tuned into the blog more recently, Ann was our Team Mattie Coordinator. Over the course of Mattie's battle, Ann and I landed up spending a lot of time together and certainly after Mattie's death, I would say that I spent a rather intense year with Ann. Certainly dealing with the trauma of Mattie's death, but also trying to help her as her dad was dying. These life and death issues bonded us as friends, and therefore when life gets busy and too complicated, we at times can miss our time together. After walking in the beautiful sunshine for an hour, I came back to Ann's house and wasn't feeling well.

Despite how I felt, I was scheduled to participate on a conference call today with the Sibling Research Advisory Board (SRAB), of which Supersibs is a community partner. I met Melanie Goldish, the Founder of Supersibs, at the Curesearch Advocacy training and day on the hill events. Melanie and I instantly were drawn to each other, since we were speaking the same psychosocial language and advocating for the psychological and emotional support of families living with childhood cancer. Any case, Melanie invited me to meet by phone the amazing group of psychological researchers around the country who comprise the SRAB. It was a wonderful phone call, in which I got to hear about the cutting edge psychological research taking place with siblings and family members of children with cancer. I look forward to continued dialogues with this group and ways for Mattie Miracle to get involved.

After the call, I headed straight to the doctor, since I had my recurrent bladder pain. I honestly did not know how I would have the stamina to drive myself and get the prescription I needed. But through Mattie's battle I endured a lot, and worked through pain. I literally walked into the doctor's office without an appointment. They took one look at me, keeling over in pain, and swooped me right into an exam room. I told the nurse practitioner today who saw me, mind you she has seen me several times for this issue along with my doctor, that she was my angel of mercy. She told me I made her day since she was having a bad day in which she wasn't able to help certain patients. I naturally understood that as well, since I know that modern medicine couldn't save Mattie. Needless to say, I hope to feel better in the next day or so, but right now, I am still feeling awful.

Despite not feeling well, I went to Dr. Aziza Shad's house tonight. She called a special gathering of 20 women. She wanted to thank us for the work we are doing for Georgetown University Hospital. Aziza is the kind of person who you can call and ask for help at any time of the day! Though I am not her patient, if I have a problem she still returns my calls from where ever she is in the world. So when she asks me for something, I try my hardest to follow through. It is mutual admiration. Dr. Shad is the chief of the pediatric HEM/ONC clinic at Georgetown University Hospital, and she was the doctor who helped us in extraordinary ways when Mattie was dying. Aziza is not only highly competent, she is a doctor with incredible compassion and character. So when she invited the 20 of us, you can see we all found a way to participate. I was surrounded tonight by 19 other women who also had a child diagnosed with cancer and whether their child lived or died, they now devote their time to raising funds for the Hospital and Aziza's work. Hearing the accomplishments around the room were impressive and I am excited of the prospect of having the contact information for each of these women to network with.

Each of us had the opportunity tonight to tell our cancer story and to discuss the work we are currently doing. Mattie's story is a touching one and though our Foundation was created in November of 2009, we are making great strides already. I had many people come up and talk to me, and I also enjoyed interacting with Denise, Mattie's social worker. In many ways, Denise and Dr. Shad tried to normalize my feelings. I sometimes develop intense anger for parents whose children survived their cancer battle. That may sound nasty or inhumane, but I think it is one of my ways of processing Mattie's loss. Unlike other moms who can cry about the process, I usually don't. My lack of tears shouldn't be confused with not feeling or not loving my son. My tears are internal, usually in the form of depression and anger, and in many cases with physical symptoms.
I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend, Kristen, who remembers us and Mattie each and every Tuesday. Kristen wrote, "I thought of you early this morning when I woke up and saw the moon shining through the window. It was Tuesday..."

The second message is from my friend and colleague, Nancy. Nancy wrote, "I'm up early and on the computer. I thought the poem from last night's blog was perfect for the introduction to your reflections. Nature has a calming way for many especially when dealing with grief and loss. The idea that one we've lost might be with us afterwards intrigued me as I, too, needed a connection following my father and then my mother's deaths. I think circumstances and the trauma of the death determine the strength of the need. We discuss often the many complexities of birth, raising a child, and then the unbelievable issue of the early death of a child. You have been masterful in illustrating how important it is to have something to return to and nature is that lovely vehicle. I, too, saw some beautiful trees blooming as I was driving to my friend's house yesterday. The return of Spring and the blooming of the trees/flowers shed a ray of hope, just like the theme of this year's walk, Faces of Hope. I'm glad that you stuck with this theme and know that it will be powerful. Lauren is a beautiful example of a child understanding more than we give them credit for when she was able to show her appreciation of the gift of survival by her creation of her 'Bows.' I will miss not meeting her at the walk and await your description of her visit. Mattie has provided this same gift (although you have to miss his smile, hugs, and growth), with all the stories that you have shared and the volumes of pictures that you display on the blog. Peter and you have had many sightings. whether you are together or as you are right now, many miles apart, Mattie is with you always."

Monday, April 24, 2011

Monday, April 24, 2011

Tonight's picture was taken in May of 2006. Peter and Mattie took me out to lunch for Mother's Day in Maryland. Most likely before Peter snapped this picture, he asked Mattie to show me how much he loved me. I think his smile and face say it all! No gifts, cards, or words were necessary. The picture illustrates his love. I can also see that right next to me sits Mattie's bag of tricks (toys, books, legos, etc) which I always took with me anytime we went out to eat. Mattie was NOT interested in food or having a dining experience, but he was interested in interacting and playing while eating. So this bag was essential.


Quote of the day: I'm Gone now, but I'm still very near.

Death can never separate us.
Each time you feel a gentle breeze,
It's my hand caressing your face.
Each time the wind blows,
It carries my voice whispering your name.
When the wind blows your hair ever so slightly,
Think of it as me pushing a few stray hairs back in place.
When you feel a few raindrops fall on your face,
It's me placing soft kisses.
At night look up in the sky and see the stars shining so brightly.
I'm one of those stars and I'm winking at you and smiling with delight.
For never forget you're the apple of my eye. ~  Mary M. Green


I selected this quote/poem tonight because of a ladybug sighting I had last night.  On my bedside table sits a reading lamp. I could hear something flying around the lamp last night, and I was just about to swat at whatever it was, when I saw it was a beautiful ladybug. Mattie and I loved ladybugs! I told Peter about this ladybug and his response to me was it was a little early in the season for ladybugs, and instead, Mattie was sending me a message that I wasn't alone. That he was checking in on me. In a way that notion was a very special Easter gift. So as I was reading this poem tonight, I couldn't help but pause again and reflect on the aspects that surround me in nature that are signs of Mattie's presence and his connection to me. These connections are all I have left.

I received a text message from my friend Tina today. She wanted to know if I wanted to go for a walk. I should be going for a walk everyday, but haven't been in the mood lately. However, her invitation got me to stop and to make the decision to go outside and get some fresh air. I met Tina at 2pm, and we walked outside with her dog, Max for about an hour. Max and I get along quite well and we seem to understand each other. Tina's neighborhood is filled with beautiful blooming trees, bushes, and flowers. It was an amazing sight of color to walk down each street. Somehow I never saw colors so vividly before as I saw them today and as we passed certain yards we just stopped and checked out flowers and fragrances. It was a gloriously warm weather day in Washington, DC, and it really made you feel that perhaps spring is finally here. I appreciated Tina's message today and our walk. Walking and talking always makes me feel better.

I began my day tackling this hospital script. I wrote another page to the script, but now am addressing the hardest part, the lessons learned. Lessons that may perhaps get physicians to think outside the box. I believe I have crafted a way of delivering this message without being negative or accusatory. Instead of discussing things that didn't work, I am reflecting on the things the medical staff did that worked beautifully and why.  Or at least this is my current thinking.

I received this wonderful picture today from Lauren. Lauren is our 13 year old Face of Hope. She is an osteosarcoma cancer survivor and will be one of the featured teens at the Foundation Walk this year. As many of my readers know, Lauren creates hair bows out of duct tape, sells them at her school, and gives the Mattie Miracle Cancer Foundation her proceeds. Lauren continues to be very successful at raising money for our cause! Lauren designed this "Bows for Hope" sign, which she uses at her school to promote her hair bows. At the moment Lauren is very busy not only with school work, but also hand designing many duct tape bows to sell at our Foundation Walk! It is my hope that all those in attendance will stop by and see Lauren and check out her bows!

I would like to end tonight's posting with a youtube video I came across last night. Frankly I did not even know this video existed. Peter must have put it on youtube a while ago! It is a short video of Mattie in his PICU room. He was sitting on his bed next to Katie, one of our outstanding HEM/ONC nurses. Mattie nicknamed Katie, Dorothy, because of her pretty shiny red shoes. Any case, I leave you with Katie and Mattie, and their version of ....... This Little Piggie!

Katie and Mattie --- This little piggie
http://www.youtube.com/watch?v=BUYwM972jD8&NR=1

Sunday, April 24, 2011

Sunday, April 24, 2011 -- To all our readers, we hope you had a Happy Easter and a Good Passover.

Tonight's picture was taken on Easter of 2009. Our last Easter with Mattie. Mattie's friends, Louise and Meredith, came to the hospital and hosted an Easter Egg hunt for him. Mattie loved it, and the interesting things they stuffed the eggs with made him smile. They knew Mattie did not like chocolate or candy for that matter. So there was money in the eggs and rubber bugs. Mattie thought that was absolutely great! I miss that face and Easter is not the same without him in our lives.

Quote of the day: For some moments in life there are no words.  ~David Seltzer


David Seltzer's quote could have been my motto for today. Today was a bad day on so many fronts. Sometimes it is hard to describe bad, pain, and grief! Because there is certainly a continuum to these feelings, but there are NO words to adequately describe the feelings. Last night before I went to bed, I had the notion that I would meet Ann at church today and then spend the day with her family. I even picked out a sundress to wear to church. When Patches got me up at 6:30am with her howling, that started my day on a bad note. In fact at 7am, I sent Ann a text message saying I wasn't going to see her today. I put the dress back in the closet, along with my shoes and jewelry, and got right back into bed. I did get out of bed by 9:30am, because it was 7:30pm (in Bangladesh) Peter's time and we agreed to connect by Skype at that time.

Peter could tell I wasn't having a good day already, and he listened and we chatted about his first full day of work. Which despite being up without sleep for 24 hours went very well. He is staying in a Westin in Bangladesh, and from what I can see from the pictures it looks like any Westin we would find in the United States.

I recall that last year, Easter was on Mattie's 8th birthday, April 4, 2010. Needless to say, both Mattie's birthday and Easter were a blur in 2010. This is our second Easter without Mattie and I can sadly report it isn't getting better or easier. I was fortunate enough to be able to connect with several people through email today. My friend Nancy, in NY, greeted me with a message and we talked about the commercialism of Easter. She wondered if Easter was like this when I was growing up or whether it was more about the spiritual nature of the holiday? As a child I certainly remember the Easter eggs, baskets, pretty dresses, bonnets, and candy. But I guess as I am an adult now, who has lost my only child, Easter seems very focused upon all the things I NO longer have in my life, rather than the rebirth of Christ. In fact I feel that it is impossible to celebrate Easter without having these other factors in my life. As if I am not entitled to celebrate Easter.

Later in the day, I was exchanging emails with my mom, and we were talking about the hospital script I am working on. I worked on it for hours today, and wrote five pages so far. My goal is to write a 10 page script, to deliver at the Medical Grand Rounds at Georgetown University Hospital on May 20. My mom was empathizing with me about how challenging and painful this has to be, and how she wished this wasn't a part of my life.

As the day wore on, I found myself getting more sad. It was at that particular point in time that my friend, Tina began text messaging me. Tina also invited me to spend the day with her, and really tried giving me all sorts of options to entice me out. I did remain at home, but I enjoyed our chats, which got more lengthy so we moved from text messaging to emails. It is amazing the words we choose to use with each other can make all the difference in the world. In fact it can change your outlook about a particular situation. Tina did that for me today. We have been chatting about all sorts of things, especially old movies and musicals, which we found out we both happen to like.

As I was eating dinner tonight, I turned on the TV. To my surprise I found the movie, Easter Parade, had taped today. This is one of my favorite things to do on Easter. I love old movies, and I am big fans of Judy Garland and Fred Astaire. I was glued to the TV for the entire movie, and I found listening to the music, watching them dance, and following the story line made me happier and for that moment in time I forgot my problems.

I would like to end tonight's posting with two special messages I received today. The first one is from my friend and colleague, Nancy. Nancy wrote, "As I do many times before I write to you, I check out the blog of the last few days. I awoke and knew that I wanted to reach out to you especially since Peter is on the other side of the world from you. Karen and I are on the same wavelength as I was thinking how ironic it was that Peter had to be away for these two events, Mattie's birthday and today's holiday. Listening to your frustration about all the Easter hype brings home how myopic people are. At times like this all they think about is from their own perspective. For us, as counselors, it is hard to remember that at times. As a mother, it is impossible! We are always thinking about our children and planning how to make each day count. In this regard, you can pat yourself on the back because you did that each day of Mattie's life and continue to each day following his death. I was glad that Mattie was watching over Peter as he made his trip to Africa. How unsettling that he has these two long trips within the last 6 weeks. This is another example of the stamina that Peter and you have. You are a mentor to others even when you don't want to be."


The second message is from my friend Tina. Tina is the same person who hosted the successful Art Show last week from which the Mattie Miracle Cancer Foundation received a percentage of the proceeds. Tina wrote, "From reading your blog, I think that one reason you are a good teacher is that you connect with your students of all ages on more than just one level. You provide the information, but then you also dig deeper. Your words are thought provoking. I think you know where your students are coming from and they sense that you are open to their ideas and contributions --whether that is as an art teacher or in your professor mode. Your blog is just another way to teach about one of the most difficult and challenging subjects out there. I love it when teachers admit that they don't know all the answers when something comes up. In your blog, we're able to travel the journey, your journey, with you and reflect upon our own challenges, losses and the people we grieve for. It is a rare person who can put these feelings into words that make sense--make sense to themselves much less anyone else! I wanted to be in the room with you for your art lessons! Magic! You have a gift V. Teaching students of any age isn't something that is easy to do. So much work goes into it whether it is kids or adults. Your former student knows this. Something to think about as you consider your book. I'm happy Peter arrived safely and that you have had time to chat a bit. I want you to know that your words today (as always) were appreciated. Health is everything. Our family is everything. We need to remember how precious our life together is. Somewhere I heard that friends are the family you get to choose. Remember that I choose you and that you have many, many other people who have chosen you. While we can't begin to lessen the loss you feel constantly without your sweet Mattie, know that we are here. As mother's day approaches, I know it will never be the same, but you are very much still a mother, a nurturer and a teacher. That doesn't stop. You are needed. You are a wonderful friend to Mary and to everyone you come in contact with. You are doing so much through your MMCF work and blog that you inspire all of us in many ways and are changing the lives of everyone you come in contact with."

Saturday, April 23, 2011

Saturday, April 23, 2011

Tonight's picture was taken in May of 2006. Mattie was out on our deck, playing in his frog sandbox. As you can see he took off the lid of the sandbox, and piled every toy he kept in the box into the lid and then jumped inside the lid to sit with all the toys. It seemed like quite a sight to me, so I took a picture of him!


Quote of the day: Grief is a tidal wave that over takes you, smashes down upon you with unimaginable force, sweeps you up into its darkness,where you tumble and crash against unidentifiable surfaces, only to be thrown out on an unknown beach, bruised, reshaped...Grief will make a new person out of you, if it doesn't kill you in the making. ~  Stephanie Ericsson


I couldn't agree more with this quote. Grief changes you. It would be impossible to go through a 15 month ordeal of watching Mattie battle with cancer and then die a horrific death and come out of this experience untouched. I understand the author's sentiments that at times it feels like grief could kill you. I suppose this feeling was heightened today or maybe just this weekend in general. If I hear or see one more Easter related advertisement or the talk of Easter egg hunts and baskets, I may lose it. It is interesting how a season of renewal and rebirth, doesn't feel that way to me at all. In fact, if someone did not tell me that Friday was Good Friday and tomorrow was Easter, I really wouldn't know. It is my hope that God understands my feelings. Actually I do believe God understands my feelings, and instead it is earthly beings who represent and espouse his teachings who would have me believe otherwise.

As I write tonight's blog, Peter is 9300 miles away, safely in Bangladesh. Though it is 9:30pm on Saturday in Washington, DC, it is 8:30am on Sunday in Bangladesh. Literally Peter got off the airplane, checked into his hotel, showered, and reported to work. No rest in between. Apparently his client meetings begin on Sunday, on Easter. At 11:30am, I received a surprise email from Peter. He was emailing me from the Doha Airport in Qatar. His flight from Washington, DC to Qatar was 12 hours long. At the Doha Airport, they offered free wifi services, and so we chatted back and forth with each other for at least an hour. He then signed off and boarded his next flight to Bangladesh, which was another 6 hours of flying time.

The first message I received today from Peter stated, "I am here. The flight was long, but I was dozing through several hours of it. It was weird flying as I took off at night, and then it got light out, and then we landed just as the sun was setting. Doha looks very sandy and very built up in the main city. The airport is right on the sea. One story for you, a few hours into the flight I opened the shade and looked out, and saw a light, a fixed light. I first thought it was the wing, but then I noticed after a few minutes it was getting a little higher. That's right, it was the moon. It stayed with me for hours and of course reminded me that I was not alone...."

I found Peter's message very touching, as Mattie Moon was following him and keeping him company along his journey. Tomorrow is Easter, and yet without Mattie integrated within our day, it seems like just another day. Today was one of those days, where I really did not want to get up and do anything. But thanks to Patches, my cat, staying in bed was not an option. Nonetheless, it was a very quiet day that served as a constant reminder of the magnitude of what we have lost. For those of you who read this blog and who have children, please remember how lucky you are. Nothing in life is a given, so when your children have their health, you actually have the greatest gift life has to offer.

Friday, April 22, 2011

Friday, April 22, 2011

Tonight's picture was taken in May of 2006.  As you can see Peter and Mattie were wearing matching preschool t-shirts. It seems ironic in a way that the sun was the symbol for Mattie's preschool and the sun has now become the symbol of Mattie's Foundation. I somehow do not believe this was by coincidence. Mattie was a ray of sunshine and a force, which not unlike the sun, it is hard to live and grow without. This is one of my favorite pictures of Mattie and Peter because to me it just shows happiness. 


Quote of the day: It is the will of God and Nature that these mortal bodies be laid aside, when the soul is to enter into real life; 'tis rather an embrio state, a preparation for living; a man is not completely born until he be dead:  Why then should we grieve that a new child is born among the immortals?  ~Benjamin Franklin


I found this quote tonight and though I have great respect for Benjamin Franklin, I frankly disagree with his sentiments. I also have to imagine that his reflection on death did NOT apply to that of a child! For I take NO comfort in thinking that Mattie is born among the immortals!

Though I have not reported this on the blog, Peter had to pack today for another two week business trip. This time he is spending a week in Bangladesh and the second week in Kenya. The amount of flying he is doing in this two week time period is sickening to someone like myself. Just to get to Bangladesh, he must fly through Qatar. Needless to say it will take him 29 hours of flying to get to his final destination, and once he is there, there will be a ten hour time difference between us! I am not sure why I haven't mentioned his trip sooner on the blog like his Africa trip, but I sometimes I find there are topics I do not care to talk about.

I received an email from my lifetime friend, Karen today and she asked me about the timing of these trips. The Africa trip occurred over Mattie's 9th birthday and this current trip occurs over Easter. Naturally in the business world such dates of importance are not factored into the equation. Most likely at one time, I wouldn't have thought twice about it either, but our life circumstances are different now. It was hard not having Peter here for Mattie's birthday and as Easter comes and goes, it will be challenging without Peter again. Why? Because no one else truly gets how upsetting these holidays are to me. Peter of course does, because he is living the nightmare with me. So I reflect on Karen's comment, and I too wonder, what other travels dates are in store for us. Peter returns the day before Mother's day. Another horrible day in the year for me, and perhaps the day will just pass by, since when Peter returns he will be all screwed up from time zone changes.

Needless to say, I will be giving you Peter updates from around the world! Peter and I spent the day at home trying to get him packed and working on Foundation items together. We were quite productive. While on the Internet, I found the following two links about The Mattie Miracle Cancer Foundation Walk. The first link takes you to the Washington, DC Metropolitan Area LEGO Train Club site (WAMALTC). WAMALTC will be hosting a wonderful Lego model train display at the Walk, and the trains will we working and moving through Lego city displays. The second link features our Walk advertised on the community services site of a local school, The Lab School. The School is encouraging its students to participate in our Walk. I wasn't sure how the School found out about our event, so I wrote the Head of the School today. She wrote back immediately and put me in touch with her community services coordinator. It turns out that one of Mattie's former babysitters, Alyx, is now a speech therapist at the Lab School. So we thank Alyx for promoting our event at the School!

Washington, DC Metropolitan Area LEGO Train Club (WAMALTC)
http://wamaltc.org/


The Lab School
http://www.labschool.org/content/communityservice-0

Thursday, April 21, 2011

Thursday, April 21, 2011

Tonight's picture was taken in May of 2006. The look of excitement on Mattie's face was the fact that we transitioned him from his crib/toddler bed to a twin size bed. The head and foot boards of the bed in this picture were constructed by Peter's maternal grandfather. Peter's grandfather built two bed frames, one for Peter's mom and one for Peter's aunt. We have both frames, and Mattie was actually very excited to be sleeping in a bed that had the bed frames his dad and grandmother both used growing up! I was very hesitant to transition Mattie into a "big boy bed." It took so long for him to master how to sleep, that I was afraid to mess with what was working. But just like everything else, Mattie let me know when he was ready, and I was usually pretty good at following his lead.


Quote of the day: One life. Live it.  ~ seen on a bumper sticker of a car

As I was driving around town today, I passed a car with the bumper sticker, "One life. Live it." At first I did not pay much attention to it, but then these four words seemed to be spinning around in my head. Somehow I couldn't help but think of Mattie and how he was forced to live his one life in 7 short years. Perhaps life shouldn't be measured in years, but instead in how it is lived. If that is the case, Mattie lived a full, bold, loving, and happy life. Well that is of course until cancer took over. However, even battling cancer, Mattie showed a remarkable ability to energize others, to suck you into his world, and to genuinely care about other people despite his own issues.

I spent most of the day at home trying to put thoughts together for a script I am writing for May 20 (TWO DAYS BEFORE THE WALK). As a member of the Georgetown University Hospital Pediatric Parent Advisory Board, I have been asked to testify at the Hospital's annual medical grand rounds. My understanding is that 500 or more physicians and medical professionals attend this event. There will be two other people speaking in addition to me, and we are each given 12 minutes to convey our feelings about family centered pediatric care. Or in other words, from my perspective (and the mission of the Mattie Miracle Cancer Foundation) the importance of understanding the psychosocial needs and support of children and their families with cancer. At first I was going to sit down and start writing about Mattie and our hospital experience. However, I decided to step back and reread portions of the blog. In fact, I plan on combing through a year's worth of blog writing to see what important insights I shared throughout Mattie's treatment process that I can integrate and highlight in my script. Needless to say, though I have lived Mattie's ordeal, it is trapped somewhere inside my brain. Reading the blog postings from 2008 was VERY overwhelming. In many ways it was like reliving a trauma and being placed right back into the scene of the crime.

Though I write each and every night, I did find writing Mattie's eulogy very intimidating. I struggled with it for weeks and then one morning as Ann flew to Boston to attend her father's funeral, I sat at her kitchen table and simple wrote for hours. This script is also a labor of love. Most likely because I put a great deal of pressure on myself to write the PERFECT script. The script that will capture Mattie's life and honor his memory. In many ways, this is why planning the Foundation Walk becomes an all consuming process for me as well. I do it for Mattie, and for those of you who did not know how Mattie and I related to each other, then you will just have to take my word for it when I say that Mattie and I together were intense! We fed off of each other, we had the same temperament and disposition. The walk, scripts, advocating on Capitol Hill, and so many other things are symbolic ways in which I keep Mattie's memory alive. So to me that memory is sacred and as such, it becomes hard to know how to capture it in writing!

I spent a good portion of the day crying and thinking about what we survived and lost. In addition to the script, I am lucky enough to have the assistance of Mattie's technology teacher, Mary, help me with a short video I will end my testimony with. The video will show pictures of Mattie from birth until death. The pictures will move to the music I selected. I chose a song called, "I'll remember you." Shortly after Mattie died, Mattie's preschool director's daughter sent me this song. A friend of her's wrote it, and as soon as I heard it, it brought me to tears. As I was designing this video for the doctors, I originally was going to show the pictures moving to ABBA's song, Dancing Queen. This was Mattie's favorite song at the Hospital, because literally he was learning how to walk again with this music in the background. There were days we even migrated around the fifth floor of the hospital singing it. Needless to say, we caused a commotion and got a lot of attention! However, Dancing Queen is an uplifting song, and it did not quite capture the sentiment I was looking for. I want physicians to understand that they don't only scientifically treat patients, but they are treating a person. Mattie was a bold person, and a little boy full of life. His cancer had ramifications on him and on Peter and I, and I am hoping the song tied to the pictures pulls on their heart strings and frankly makes them uncomfortable. Uncomfortable to me is good from an educational standpoint, because with discomfort, brings change and the willingness to perhaps do something differently.

Later this afternoon, I visited with Mary, Ann's mom. She was happy to see me. I told her she saw me three days this week, and that she is going to get tired of me. At which point one of her caregivers walked into the room and we all started talking together. The next thing I knew Mary blurted out "NEVER." At first I had no idea what she was saying to me, since this wasn't in line with what we were currently talking about. But what I realized was she was responding to my initial statement. She was telling me she is never going to get tired of seeing me. Mary appreciates my friendship and what I admire about her is she is able to verbally communicate that and shows concern about my wellbeing. Do I think Mary and I would be close friends if we both did not lose our son's to cancer? Perhaps, but I do think this commonality serves as a strong foundation of our relationship. 

Wednesday, April 20, 2011

Wednesday, April 20, 2011

Tonight's picture was taken in May of 2006, around Mother's Day. Mattie was in preschool and one of the mother's day gifts he made for me in Margaret's class was a popsicle stick picture frame. This frame and gift remains on my refrigerator from 2006. Five years later.... the frame remains, but the child does not. As you can see by this frame, Mattie always liked bold and happy colors.

Quote of the day: Life is eternal, and love is immortal, and death is only a horizon; and a horizon is nothing save the limit of our sight. ~ Rossiter Worthington Raymond


For those of you registering for the Walk and giving us positive feedback about the Walk logo, I THANK YOU! As I mentioned in my emails today to our supporters living afar, we value your participation in our Walk and we designed a pledge form this year so our extended community could virtually participate. The pledge form gives you the opportunity to talk with your friends and family members about pediatric cancer, the Mattie Miracle Cancer Foundation, and our goal to raise funds for the Childlife department at Georgetown University Hospital. If you want more information about pledging, I attached a helpful link: https://www.mattiemiracle.com/Pledge_to_Walk.html

I had the opportunity to have lunch today with a former student and now my friend, Susan. Susan is a high school counselor, and we had the opportunity to talk about her school, children and our society, the complexities of counseling today's youth, and naturally living life after losing a child. Many of my students ask me if I miss teaching or when I plan to return to the University. For me the answer is, I DON'T KNOW! There is a great deal about academia I do not miss! However, the number one aspect of teaching I miss is my students. I learned a great deal from them over the years, they made me a better educator, and they stimulated me to want to learn more and stay current. However, after experiencing cancer your life, world view, and interests change. So though I may look the same from the exterior, on the interior I am very different. My tolerance for certain aspects about life now are MUCH lower.

During the day, I received some wonderful pictures from my friend, Colleen, in Boston. Colleen and I met each other in our Master's in biology program at Boston College. Colleen's daughter, Ashley, grew her hair out and got it cut yesterday for Locks of Love. I find it fascinating how children observe their parents reading the blog, and in a way kids are intrigued by the blog, its pictures, and Mattie. Though Ashley never met Mattie, in a way his life has impacted her decisions.

Colleen wrote, "Just wanted to share a few pictures with you of Ashley. She decided, with some encouragement from me, to grow out her hair and donate it to Locks of Love. It all started with a friend who was doing the same and she asked me why someone would need someone else's hair. She would always see me reading your blog in the mornings and I reminded her how there are children like Mattie who get cancer and lose their hair due to the treatment that they have to undergo to try and get rid of the cancer. She took that all in for a bit and brought it up again a bit later. Mattie had passed away by this time, but it also coincided with a little girl in Jack's class who was diagnosed with Burkitt's Lymphoma. So, I asked her if she would like to grow out her hair and donate it (she had a good 4 or 5 inches about that time) and she said yes. While she was growing out her hair and getting very close we would mention Mattie and this little girl and how someone like them would be thrilled to receive Ashley's hair. When people remarked how long and pretty her hair was, she would always say "I am donating it for Locks of Love." So, yesterday was the big day of getting her hair cut and I wanted to share the pictures with you. Even though Ashley never met Mattie, here is another instance of Mattie touching the lives of others!"

Later this afternoon, I visited Mary, Ann's mom. As I tried to open Mary's door into her assisted living room, I was met with resistance. There was something behind the door. So instead of forcing it open, I tried to squeeze my head in to see what was blocking the door. To my dismay, it was Mary's roommate sprawled out on the floor. She had fallen and was lying behind the door. Mary heard the fall, but due to her own condition was unable to do anything about it. So I wasn't sure who to address first upon entering the room, the lady on the floor or Mary who seemed to want to know what was going on. Either case, I went out into the hallway and found a nurse and together we assessed Mary's roommate and then we each grabbed an arm, and slowly lifted her back into her wheelchair. The roommate is a feisty and obviously strong individual, because she was physically fine. But the whole situation was unsettling and the staff were just as concerned and perplexed by what I saw. There are people in an out of Mary's room all day long, so I know her roommate wasn't on the floor for long. Though I visit Mary often, her roommate has dementia and each time she meets me it is like meeting me for the first time. Which is fine and I always tell her who I am and why I am there. Mary's roommate for the most part doesn't like to be touched, and most definitely can give her caregivers a hard time. She will yell at them and talk down to them, which of course doesn't inspire others to care for her. Any case, I have found that when I interact with Mary's roommate, I always ask for permission to help her, and when I lifted her off the floor, she did yell at us that she did not want to be touched. But I reasoned with her that it wasn't good or safe for her to be on the floor, and therefore that is why we were assisting her. That explanation made sense to her, and she complied. I think Mary's roommate is the perfect illustration of what we all want in life. The chance to be in control of our own lives and to be able to make certain choices for ourselves. All I can say, is there are great life lessons to be learned by visiting Mary and her roommates.

I would like to end tonight's posting with a message from my friend and colleague, Nancy. As I told Nancy today, I really needed her message. It helped to perk me up! Nancy wrote, "Peter and you brought Spring into my life this morning. It is cloudy with a prediction of thunder storm and overall non sun day and then I clicked on the blog. The first vision to brighten my day was Kristen's 'Faces of Hope' logo. It is spectacular!!!!!!!!!!!!! It definitely captures your message and love for Mattie, first, and children and families afflicted by this disease, next. We all need a little hope to keep going. Then I read about the thank you note that Donna and you received from her student's Mom. To me , as a former teacher, these are the precious memories that are saved. Notes from the children I've taught and their parents acknowledgment kept me going on the day's when I felt that I was just another face. I think my greatest thank you has been from a former student, now a mother of three + her teenage stepson, who has included me in her life till this day. Mom's essay said so much about you and what you did in this kindergarten class. I loved it when she said that you should be cloned because in some ways you already have been. The first piece of you was transformed in Mattie. You gave him roots to grow, a body that withstood many assaults, too many for such a small body, and a head which housed his storehouse of ideas, creations, desires, and many feelings. Next you have inspired many a student wanting to facilitate and support people on their life's journey. With your deep loss, you have found another way to be cloned in writing your blog which allows you to see just how far reaching your words and experiences have traveled. Finally, for now, a piece of you has been transformed in a little kindergarten boy who understood, appreciated, and shared the knowledge and joy of art from your sessions on Matisse and Picasso. ( In fact, this weekend, my daughter, Cindy, was showing me some of the artwork that Jordana (our little artist) has been doing in her pre- school. One of her pieces was inspired by Matisse too and I told her of your beautiful lessons). I love how you have turned your city deck into a collage of color. I await seeing a picture of the fountain once Peter has fixed it. The Gerber daisies are a beauty and what a view from your kitchen window. You have sight, sound, color all at your beck and call. That is inspiring too as we enter the birth season of Spring when the earth comes alive. In honor of Earth day, April 22nd, you gave signs of our magnificence! All this while Peter and you are handling the many challenges of this year's walk. Team Mattie is an ongoing process as well. You bring hope to families as they witness your drive, love, and determination to make Pediatric Cancer a memory."

Tuesday, April 19, 2011

Tuesday, April 19, 2011 -- Mattie died 84 weeks ago today.

Tonight's picture was taken in March of 2006. I snapped the picture because this was a RARE sight in our house! Mattie NEVER napped, even as a baby, napping wasn't Mattie's forte. I loved when Mattie's pediatrician would tell me that ALL babies nap. During those doctor visits, I always felt the urge to invite this doctor back home with us to observe how well napping went. Despite my greatest  efforts, I learned Mattie wasn't going to nap if he did not want to. Mattie would nap only as a precursor to getting sick.

Quote of the day: The sorrow which has no vent in tears may make other organs weep. ~ Henry Maudsley


This quote caught my attention tonight because it captures how I am physically feeling. I am feeling very tired, worn out, and congested. I do think grief and sorrow manifest symptoms in one's organs. Throughout one's whole body and mind actually. I may have brushed that notion aside at one time, but having a bird's eye view of grief, it enables me to speak with great confidence about the subject matter.

Despite feeling run down, I accomplished a lot today. I drove to Rockville, MD, and visited the WMZQ radio station. WMZQ donated two Kenny Chesney tickets to our Walk's raffle this year, and in addition to their support in May, they wrote me an email saying that they look forward to participating in future Mattie Miracle events!

Plans for the Foundation Walk are moving right along, and we have begun posting press releases about the event. You can see one of them below:
http://www.prlog.org/11444265-young-survivors-of-childhood-cancer-lead-annual-walk-to-raise-awareness-about-pediatric-cancer.html

Peter and I are very grateful to Kristen Johnson. Kristen is a graphic designer and is the creative professional who designed our Foundation's logo. I instantly loved Kristen when I met her. She was introduced to us by our friend, Liz. Kristen immediately understood our desire to capture Mattie's memory and she also understood our mission, goals, and passion to help other children and their families with cancer. Kristen's logo for our Foundation captures Mattie's sun (which he painted with his art teacher), and the Foundation sun logo also has 7 rays, one for each year Mattie was alive. Because we feel Kristen is in tune with our Foundation and our vision, we turned to her for help with the design of this year's Walk t-shirt. We literally spoke to Kristen on the phone for 15 minutes, and within that short period of time, she got exactly what we were looking for in a t-shirt. So I am happy to report that t-shirt design and production are well on their way. Once again we are grateful to Kristen, who did this t-shirt design pro-bono! An amazing lady! Last year at the Walk, to my surprise, Kristen was in attendance. She wanted to come to show her support, and she was truly moved to see the logo she created posted everywhere. In a way it is like an artist seeing one's creation in a museum. Kristen will be at the Walk again this year, and I told her she will be blown away between the Foundation logo and the Faces of Hope t-shirt design. To see the Faces of Hope Logo visit: https://www.mattiemiracle.com/Home.php

In the midst of how I am feeling today, I received a surprise Easter care package from our friend, Tamra. She gave me angel wing wind chime, which naturally reminds me of my favorite angel and a beautiful butterfly glass dish. Both meaningful gifts, especially on a Tuesday. A Tuesday, where we acknowledge that Mattie has been gone 84 weeks from our lives.

The second surprise I received was from a parent of a child in Donna's class. This parent, Liz, wrote to Donna and she wanted Donna to pass along the message to me. Liz wanted me to know how much her son appreciated my art lessons. Liz wrote, "I just wanted to let you and Vicki know how much my son LOVED the Picasso/Matisse presentations over the last several weeks. He wants to go to Spain and France. He quizzed us on “sad colors” (blue) and “happy colors” (red—although he also said yellow, but maybe that’s HIS happy color!--and his sister has decided after talking with him that green is HER happy color) and told us that Matisse was a lawyer “just like the two of you!” Unfortunately, I had to break it to him that Ted and I were not planning to change our careers and become artists at this point. :) We are going to be taking the kids to the National Gallery of Art this weekend to show them their paintings and I am quite positive that my son will be able to tell us more about Matisse and Picasso! So, if you could pass on this message to Vicki, I would really appreciate it. I wanted her (and you) to know how much he loved the lessons and how he’s brought them home to us."

Liz's message brought a smile to my face, because the true test of learning, is integrating the content into one's everyday life. I also feel as if I inspired this little boy to talk about these artists with his parents, sister, and friends. It is no longer a class assignment, but it has become a part of his thinking and processing of the world! It doesn't get better than that! I shared this news with my parents, and my mom wrote me her comments below. My mother is a born teacher, and could teach math to practically anyone or anything. So it is always wonderful to get high praise from another outstanding professional.

A Kindergartner Discovers Picasso and Matisse - by Virginia R. Sardi

You definitely inspired this little boy and no doubt many other children in Donna's kindergarten class by introducing them to the artistic creations of Picasso and Matisse in a way that captivated their interest well beyond what one would expect from children of that age. By exposing them to the highlights, personalities and passions of these two masterful geniuses, you have planted the seed of creativity within their hearts and minds forever and given them an appreciation for art at a tender age. By cleverly designing Picasso/Matisse hands on projects for the students to work on, you opened their eyes to the possibilities of using their own imaginative skills in interpreting the beauty in the world around them. You turned them on to color in a way they had not been aware of before so that they were able to acknowledge the effect different colors had on mood and feelings. You made them think about what effect specific colors had on their emotions. Some colors make them happy and others make them sad but in some cases there was no consensus as they learned that their friends "see" the world differently including the way colors make them feel. You also gave them an appreciation for Spain and France, the countries that produced these two great artists and it is no wonder that this little fellow would like his parents to take him on a trip to both countries. Actually, I have been to both countries many times but unfortunately I was much older. How much better to start early to appreciate the art, natural beauty and the richness of the cultures of these two wonderful countries. Since you have been the motivator of this little boy's desires and have shown what exposure to a great teaching experience can accomplish, you are to be complimented. I wish you could be cloned. You should be!! For this little boy, it may just be a learning experience that he will remember for the rest of his life, where the possibilities for future benefits to him are without bounds!

Monday, April 18, 2011

Monday, April 18, 2011

Tonight's picture was taken in March of 2006. As you can see Mattie was sitting next to a flower pot. Peter and I purchased this flower pot at Mattie's preschool auction. The pot was painted by Mattie's class and each child's fingerprint was stamped onto the rim of the flower pot. When I purchased this flower pot, I had no idea that it would be with me longer than Mattie. I have traces of Mattie all around me, but yet no Mattie.

Quote of the day: There are things that we don't want to happen but have to accept, things we don't want to know but have to learn, and people we can't live without but have to let go. ~ Author Unknown



I had the opportunity to meet up with my friend Tina for lunch. As my readers know, Tina is the person who hosted a successful art show last week, of which a portion of the proceeds went to the Mattie Miracle Cancer Foundation. Tina and I met today to celebrate her birthday. Which was in February. But between Tina and myself, one of us was sick throughout this two month stretch making it impossible to get together. We rectified that today and had a delightful time talking about the art show and exchanging stories. When Tina handed me the proceeds check from Jill Steenhuis, the wonderful impressionist artist I shared with you last week, I was absolutely delighted! Delighted because it puts us closer to our financial goal of raising money to give to the Childlife department at Georgetown University Hospital. Specifically to hire a childlife specialist dedicated to helping children and families on scan and procedure days. 

Along the way today, I stopped by the jewelry store where I buy most of my Pandora bracelet charms. While talking with the owner's daughter, she handed Tina and I mother's day charm books. She encouraged us to share these with our husbands and children, as a hint for a gift. Naturally that was an innocent enough statement, because honestly how many women are like me? Yes there are certainly other women who have lost a child to cancer, but we are definitely in the minority. Yet despite the innocent comment, I had to face again the fact that Mother's day is approaching and what this will mean for me. I was a mother, but I don't get mother's day cards and gifts anymore. Almost as if my role never existed!

Later today, I went to visit Ann's mom, Mary. Mary and I spent several hours together. While I was there, Ann sent me this picture. Her children and friends hosted a
lemonade stand outside their house. The proceeds of which will come to the Foundation!


I would like to end tonight's posting with a message I received from Donna (the wonderful kindergarten teacher I worked with for the past three weeks). Donna wrote, "At choice time, I put out paper for children to make a “spring” cut out collage. They readily use the term “cut outs.” The children were very comfortable with the idea that it could be whatever shape or color they wanted, thanks to you. Two of the children sidled up to each other and the two of them just started collaborating. I took the picture (I did not include it for privacy reasons) to show you how your teaching has transferred into other parts of their day. I told them that I wanted to take the picture for you because they were combining, collaboration and free expression in their art. Their conversations were precious."

Sunday, April 17, 2011

Sunday, April 17, 2011

Tonight's picture was taken in March of 2006. As you can see Mattie was playing with his car carrier and cars. There was a train (believe his name was Gordon) involved in this scene as well. However, play close attention to the reddish stuff Mattie had on the cars and was stuffing into the car carrier! That was playdoh! Though I was NOT a playdoh fan, Mattie loved it. He loved making a mess with it and I learned early on that playdoh loved rugs and furniture. It loved our things so much it was impossible to get it off. So when playdoh came out, I tried to quarantine the play area. Looking back, I am happy I allowed all the messes, the opportunity for Mattie to be creative, and to have fun.

Quote of the day: We must embrace pain and burn it as fuel for our journey. ~ Kenji Miyazawa

Peter and I had a quiet day at home. Since the sun was out today, after major down pours yesterday, we decided to spend the day on our deck and planted all of our flower boxes. As you can see in this picture, we placed many of our indoor plants and lemon tree on top of our shed. I received this lemon tree as a birthday gift from my sister-in-law at least six years ago. The tree was shipped to us from Florida in a tiny tube. It is hard to believe how it has flourished over the years, and it is quite a producer of meyer lemons!

One of our hummingbird feeders is up and awaiting a visitor. We planted all sorts of flowers and herbs today!

What you can't see here is Mattie's fountain. It sits in the center of the flowers. Peter is fixing it, but when it is up and operational, it makes the deck a very special place to be. You can probably see in the lower right hand corner of this picture, the tip of Speedy Red. Speedy is still with us, and though Peter has tried to talk with me about donating it, I am not ready for that yet. So for now, Speedy is enjoying the deck. For those of you just joining our story, Speedy Red is a ride-on car that Mattie requested weeks before he died.

I snapped this picture so you could see Mattie's chimes that I can hear from inside. The blue fish chime, we bought together near Key West. The other chime, which looks orange and red with silver butterflies was a gift Mattie gave me for my birthday.

The last picture I would like to share with you is that of my kitchen windowsill. I planted gerber daisies in all my ceramic pots. I LOVE gerber daisies. They scream out happiness to me. Maybe because I view their flower as a happy and smiling face. Either case, I plant them on my windowsill, so that they will be one of the first things I see each morning.