Saturday, June 19, 2010

Saturday, June 19, 2010

Tonight's picture was taken in March of 2005. Mattie was almost three years old, and as you can see was playing with his favorite toys back then, trains. Mattie had a fascination with anything that had wheels on it. I would always joke with my child development classes at the University, especially when we discussed nature versus nurture. Like so many of the well known developmental studies out there making the case for nature (traits that are biologically driven) versus nurture (traits that are reinforced from the environment), I tried to actively understand these concepts as it directly related to Mattie's development. So early on I would try to give Mattie gender neutral toys. But regardless of what he had access to, Mattie always preferred cars, trucks, trains, and basically more traditional "boy" toys. Mattie dispelled my firm belief that nurture could supersede nature. The ultimate test of my nature versus nurture principle was Mattie developing cancer. There was NO amount of care, support, and love I could give him to save his life. Raising Mattie was a much better lesson than anything I could have read in a textbook, or research article for that matter. Mattie was one in a million, and perhaps my best teacher.


Poem of the day: Walking the Path by Charlie Brown
It has been nine months now
Sometimes I think I'm standing still
I'm walking the path of grief
Trudging up each next big hill
Some days are better than others
Sometimes there are smiles
Sometimes the sadness lingers
And walks with me for miles
What each day will bring
I just don't seem to know
A memory to make me smile
Or one that brings me low
They say that time will heal
I really can't see how
Since all I really want
Is to still have you with me now.
So I just go on
And try to find a way
To continue to make meaning
Without you, day to day

Charlie's poem, Walking the path, eloquently expresses the feelings of loss in my life. She is correct, sometimes memories can make me smile and laugh and other times memories can make me feel very low. But the poem's ending is most intriguing, "try to find a way to continue to make meaning, without you." This is something I struggle with each and every day. The world that I knew of prior to cancer NO longer exists. The analogy of my world is equivalent to someone who has been completely stripped of his/her identity and placed in a witness protection program. That might sound extreme, but in all reality it isn't. I have seen enough and felt enough to know that I can't and will never be the same person I was prior to cancer touching our lives. But then who am I?

Peter is on his way to Brussels tonight as I type this blog. He left Rwanda and flew to Uganda at around 11am EST. Then he flew from Uganda to Brussels (and still hasn't landed there yet!). He has an eight hour layover in Brussels, before his last leg of his flight which takes him from Brussels to Dulles International Airport in Virginia. Though we haven't talked about it, I am sure that flying on Father's Day wears on Peter's mind. I had the opportunity to talk to a mutual friend tonight and she asked me whether it would be okay to send Peter a happy Father's Day e-mail tomorrow. I thought that question was SO sensitive and thoughtful. The answer is YES! It certainly is painful to know that we are no longer parents anymore, but it is far more painful that others in our lives do not acknowledge that this was an important role in our lives. So Mary, thank you for asking this vital question!

I had the opportunity to visit Mary, Ann's mom, at Ann's house today. Tanja also came over to visit, and we joked with Mary about her late night party she had with us in her assisted living facility. The three of us will not forget that anytime soon. Seeing Mary laugh, truly made Tanja and I happy. It made us feel like our visit was somehow a success!

Later in the day, I helped Ann's daughter, Abigail, get ready for her gymnastics competition. I haven't had to tie hair back tightly for years, and I am certainly not used to doing Abigail's hair. But we managed together, and suffice it to say, there was enough hair products in Abigail's hair to prevent it from MOVING. The competition lasted three hours, and Abigail did a fantastic job. I was proud of her, since competing in front of an audience is nerve racking and stressful. Abigail has a presence about her that draws her audience into watch her. While at the competition I also had the opportunity to chat with a teacher from Resurrection Children's Center whose daughter is quite a fine gymnast. It was wonderful to see all these girls today, who have practiced and worked so hard, showcase their various talents tonight. The art of using your body in dance or gymnastics is a gift, and sharing this gift with others is very special.

During the competition, my lifetime friend, Karen, e-mailed me. She wanted to know where I was and what I was doing. When I told her I was at a gymnastics competition surrounded by children, her response was telling. She basically said that she had no comment. What that means is Karen sensed that this may not have been the best choice for me. Was she right or wrong? I don't know, but I do know that I am agitated and upset tonight.

When I got home, I ran into one of my neighbors. She hadn't seen me for a while, but she commented on how well I looked, and that she was happy I was healing. I told her that I appreciated her nice comments and for thinking of me, but I assured her the pain and hurt are still very real for me, but they are internal. The pain comes in waves, and tonight is one of my lower times.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "When you lose someone you love, it is an injury to the heart that makes us shy away from loving anyone else for fear of losing them and suffering more pain. But to do this is to make life so much less than it should be. It is as if you were a chef who created wonderful meals on the stove but one day burned yourself so badly that you had a phobia about going anywhere near a stove. Now you could survive by eating things that did not need to be cooked but all those wonderful things that you could create and enjoy with others would be forever out of your reach unless you found a way to slowly work yourself back into cooking. I am not making light of what you are going through but only trying to make a connection to the physical for anyone who is lucky enough not to have had the kind of loss that you have. The burn eventually heals, but the scar remains and if you can't find the emotional strength to overcome the trauma, you lose forever, something vital to your being. Love is so much more than this and so it is even more tragic if you turn it off for fear of another loss and another "scar". I see those scars as medals for courage; those "scars" say that you are willing to risk everything you have to reach out and love someone as much as they love you. I know it will take time and you have to find your own way through this, no one can "map" the path through grief for another, but I know you have the courage to continue to do this even though it is one of the hardest things you will ever do. Today as I practice I sent you my energy to help you continue to find your way. I hold you gently in my thoughts."

Friday, June 18, 2010

Friday, June 18, 2010

Tonight's picture was taken in July of 2007. Mattie was enrolled in swimming lessons. Mattie had a healthy respect for the water. He did not like putting his head under water and he especially did not like floating on his back. Margaret, his swimming instructor, was wonderful with Mattie. She was patient and understanding and never pushed him to do something he wasn't comfortable doing. One thing Mattie did like to do however, was kick and splash in the water.

Poem of the day: Guardian Angel by Mike Morand

Can you hear me?
Can you hear my cries?
Now that you're gone,
From all of our lives.
We can't see you,
But I can feel you're near,
I can hear your voice,
A whisper in my ear.
I know you're inside me,
In my heart and my soul,
But I keep on crying,
It's beyond my control.
Promise me you'll stay,
Close by my side,
Promise me you won't go,
And through life be my guide.
Watch me and protect me,
Help me good times and bad,
Share in my joy,
Or comfort me when I'm sad
Keep me from harm,
Stay with me forever,
Love and care for me,
And leave my side never.

Now that Peter is gone, I wake up each morning, and the first thing I do is try to connect with him. Fortunately he does have access to the Internet in his hotel room, though the connections sometimes are spotty. Peter told me today that several times a day the power goes out, which is why he always travels with a flashlight. Peter is working hard, but doing well, and he tells me he is most likely headed back to Rwanda in August. Peter begins his long journey home tomorrow, and will arrive in Virginia on Sunday, later in the afternoon.

I did several chores this morning, and eventually made my way to Ann's house later in the day. She took all the kids swimming, so I sat on her deck and continued to read Richard Evan's book, The Walk. It was quiet, serene, and the birds were singing in the background. You may recall from my posting last night, that I explained that this book is about a successful business man who loses everything in his life, his wife, his house, his cars, and his company. The story centers around how this man copes with such tragedies and learns to live again. Evans describes how the main character loses his wife in the hospital, and the deafening sound of the monitors, as she flat lined. Having heard this same sound with Mattie, it is a moment in time I will never forget. I can picture it so vividly, since I was holding Mattie in my arms as he died. Evans' writing is very emotionally laden and accurately captures the pain of losing someone in such a shocking manner. There are two quotes from the book that captured my attention today. The first one was, "My heart was buried with her. I would have been satisfied if the rest of me had been buried with her as well. As much as I have thought on this matter, I see no way around hurt. The only way to remove pain from death is to remove love from life." I understand this quote deeply. Love is a very strong emotion, and when you lose someone so important to you, allowing others in to love becomes unsettling. The pain from grief can be so awful, that some days it seems safer, easier, and comfortable to shut down and not to love. Because if you love that means you are opening yourself up for possible hurt and more loss.

The second quote is, "I believe that in spite of the chains we bind ourselves with, there's a primordial section of the human psyche that still yearns to roam free." Roaming free and be a part of nature seems so important to both this character and to myself, as we struggle to cope with a traumatic loss. I always liked flowers and plants before Mattie developed cancer, but now, being and working in a garden are therapeutic for me.

Ann's daughter, Katie, had a softball team party this evening. The girls were full of energy and really enjoyed each other's company. They clearly were a very cohesive team, and I had the opportunity to chat with both of Katie's coaches. However, in parties or other group settings, there are times were I simply need to remove myself. The fun, the noise, the energy are all overwhelming, and I need my space. So in those moments, I find another place to sit, which is what I did tonight. I migrated around Ann's house, and though Ann was monitoring the party closely, she also would check in with me, as we discussed the book and my impressions of it.

I am very tired this week while Peter has been gone. Our cat, Patches, hasn't given me a minute's peace at night. She wakes up each morning at 3am, and literally howls for an hour. Not having consistent and peaceful sleep is hard for me. I am not sure who will be happier that Peter is home again, me or Patches!

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie also included a link to a video in her message. The song she selected, God only cries, I found very powerful and meaningful. Charlie wrote, "I am glad you took the time to do something for yourself. Self care is so important, especially when you are grieving. Grieving takes a lot of energy and it is critical that you find ways to replenish your store of emotional energy. Quiet time, whether in a spa or connecting with nature is very healing even though it may bring tears. I've read Richard Evans' books and I know what you are talking about. We do all want to leave something behind, to know we are remembered. You have certainly done that for Mattie in your blog and in the foundation. I think if he sees you (and I believe he does) he is proud of what you have accomplished and the road you chose to walk. The blog is more than just Mattie's battle (or yours or Peter's). It is a map for finding one's way after the greatest tragedy a parent can experience, a testimony to hope and faith that moves past all the detours life and grief can put in one's path. As you navigate those detours with the help of your family and friends, know that you will always find a hand waiting to help you over the next hurdle. I hold you gently in my thoughts. I thought you might appreciate this link to the Diamond Rio Video, God only Cries."

http://new.music.yahoo.com/videos/Diamond+Rio/God+Only+Cries--31935435


The second message is from my friend and colleague, Nancy. Nancy wrote, "We are heading out early this morning to go to Ryan's kindergarten play. I tell you this, somewhat concerned, yet, believe that you are able to read it as my joy as well as it may be a reminder of your pain. I have much that I want to say regarding the last few days of blog. I want to read this book, The Walk. I never heard of Richard Evans and think that he will speak to me as well. I am fascinated by your comments regarding Peter's trip and am glad that he will be home for Sunday as that will be an important day for both of you to be in the same house on this planet. I loved the piece two days ago about your visit with Tanja and Mary. Laughter, as we discussed earlier, is such a healing tool. Children laugh on the average of 400 times a day, if allowed, and adults, an average of 15, if that. Isn't it sad that so many lose the ability to see the humor and lightness of life! You are an example of being able to appreciate a simple activity especially with children, although, your heart aches to hold Mattie and share a moment with him, on earth. I know that he is with you in spirit, yet, your message about his physical presence dimming, his light will never extinguish. I think Charlie and I need to meet one of these days. As I read her sentiments daily, so many of them echoed by me when I write and definitely when I read her message. I am wondering if she wrote poems before now as I have found my words translating to a new level from prose to poetry. I really appreciated her acknowledgment as an impartial audience tends to be valued as there is no payoff if they speak what they experience. I'm glad that you have had Ann for part of this week that Peter has been away and soon he will be home with you. Finally, I love that you found the serenity room at the spa. Your own little peace of heaven where you can feel, do, and be whatever you want with no distractions. We all need a bit of this!"

Thursday, June 17, 2010

Thursday, June 17, 2010

This picture was taken in August of 2007. Mattie was invited to his buddy, Kazu's birthday party. Kazu is Junko's son. Kazu and Mattie met in summer camp prior to entering kindergarten at the St. Stephen's and St. Agnes School (SSSAS). So basically Mattie was invited to a friend's party before school even began. This was the beginning of our introduction to SSSAS. An introduction that was very symbolic of what was going to come, the building of an amazing support community as Mattie developed and fought cancer. As you can see from this picture, Mattie was fascinated by Kazu's cakes, and particularly liked that it was a non-chocolate cake! 

Poem of the day: In Loving Memory by Joyce C. Lock

To have loved one, then lost,
is still better than to have never been so blessed.
To have been enriched by one's cheerfulness,
their memory lingers on.
Their hopes and ideals in the crevices of your mind,
their wisdom is there when you need it.
Whatever was good and noble within your loved one,
they still live through you.
May their life have had purpose and meaning
by keeping their good seed alive.
Only then can we truly say,
"In Loving Memory."


Today was day six of Peter's trip to Rwanda. Peter had a productive day with back to back meetings. He returns to DC on Sunday, for Father's day. Seems like a very difficult day symbolically to be returning.

I began my day at a local spa. I am not sure what I like about this spa better, its services or their serenity room. Somehow sitting in a quiet chair, tucked away in a corner, seems very therapeutic. It is my time where I hear nothing and am responsible for nothing. While in this room, I began reading a book entitled, The Walk by Richard Evans. I have read all of Evans' books, and I have always considered him a powerful writer, who understands the human condition, emotions, and the process of grief. The Walk is about a successful man who had everything in his life, but within one day, his life changes. He loses everything he holds dear. The Walk is an unforgettable journey that is as life-altering as it is life-affirming. As I began reading the first couple of chapters, it confirmed my initial feelings. Which were that I was meant to read this book, and I find it somewhat ironic that Evans is writing this five part book series that is addressing many of the issues I face daily.

Here are several quotes from the first chapter. "The reason we start things is rarely the reason we continue them." This statement got me thinking, Peter and I created the Mattie Miracle Cancer Foundation for the initial reason to memorialize and honor Mattie. However, as the Foundation continues to develop and grow, I imagine the reason we keep the Foundation alive and thriving will evolve. The next quote is, "I started writing in my diary because my mother told me to. After her death, I continued because to stop would be to break a chain that connected me to her. Then, gradually, even that changed. I didn't realize it at the time, but the reason I wrote was always changing. As I grew older, I wrote as proof of my existence.  I write, therefore I am (the famous statement by the philosopher, Descartes). I am. In each of us, there is something that, for better or worse, wants the world to know we existed. This is my story - my witness of myself and the greatest journey of my life. It began when I least expected it. At a time when I thought nothing could possibly go wrong."

Two aspects of this quote speak to me. The first is the main character in the book continued writing in his journal because if he stopped somehow he felt that would signify a break in the chain that connected him to his mom, who died. In essence I understand this profoundly. Why do I write the blog each day? Some of my readers may feel I write because it is cathartic, and I suppose on some level it is. But on another level it is much harder to write the blog now that Mattie is gone. The nature of the blog is different. When Mattie was alive, I was giving an overview of his day, his treatment, our ups and downs, and the impact of a cancer diagnosis on our family. Now the goal is different. I am no longer writing about a little boy's battle, but instead I am reporting on the aftermath of surviving such a battle. Just like with Mattie's condition, I also do not know the outcome of our own internal battles. But like Evans' character, I wholeheartedly feel that I write to stay connected to Mattie and to keep his memory alive. For me, if I modified Descartes' famous statement it would most likely say, I write, therefore I am Mattie's mom! I write, I continue to explore my thoughts and feelings with you (and I use the word YOU loosely, because I am not sure who the 300 of you are who read daily), because to me it is living proof that Mattie existed, and that Peter and I also exist having somehow survived a parent's worst nightmare.

I spent a good portion of the day with Ann today. You would be amazed what we can get done with three to four children in tow. I even had the opportunity to see Mary, Ann's mom, briefly today, and I am happy to report that Mary as well as the rest of the assisted living facility remember the fun Mary had with Tanja and I on Tuesday night. That alone made me happy on some level.

As I was driving home tonight, I heard George Strait's song, I saw God today. I attached the link to it, in case you are unfamiliar with it. But as I was listening to it, I couldn't help but reflect on Mattie's birth and the profound miracle that seemed in our lives. There are times I just can't believe Mattie is gone, and as my mind was processing his birth and his early years tonight, I simply sat, shook my head and cried. I cried because it seems unimaginable what happened and what continues to plague us in our lives.

George Strait's--- I saw God today:
http://www.youtube.com/watch?v=q06AvQF5NOw


I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "It seems like yesterday was a busy and productive day for you. You had a lot to think about and I thank you for continuing to share your thoughts on communicating and relationships with us all. I hope we are moving along to a new level and way of interacting since we've not done so well right now with what we have. Perhaps advances in technology like the I-Pad that Dr Bob was passing around will take us from our individual focus on a screen to the ability to pass the technology around and share it with each other. I think part of the issue is being willing to take the time to sit down and discuss what you've experienced or read or seen with someone else. Books are not a social endeavor and yet we are able to share via book clubs; talking about TV shows or movies with others helps us gain understanding and work on our realationships. I think we need to make the time to share what we've experienced with those we care about and in doing so deepen the level of understanding and value for ourselves and those we interact with. I see that in our classrooms when we have our students read or watch and then discuss the material with their peers and with us. They get as much from the interaction as they do from the material. I am glad that you got out to walk yesterday. Physical exercise is as much a part of healing as mental and emotional effort are. It is hard to find positive thoughts when your physical being is not well so I hope you continue to walk for both your physical and mental well being. I was also glad to hear that you were gardening yesterday and remembering all the kindnesses that were given along this path. Like those kindnesses, I hope the flowers you plant bloom and bring positive thoughts to all who see them. I hold you gently in my thoughts."

The second message is from Chris. I have had the wonderful opportunity to meet Chris at Ann's daughers' dance recital and we have been connected ever since. Chris wrote, "I read your blog daily and have emailed you before and I wanted to say how nice it was to read about the Bows for Hope project. After reading the blog I was curious to know where Lauren lived in PA because of the reference to Maple Point and the Flyers. The high school I went to was Neshaminy Maple Point in PA and I was wondering if it was my old high school that she attended. I then did a search on the school district's website and found the below link. So yes she attends my old high school which is now a middle school. I wanted to share the below link with you and let you know it continues to amaze me how Mattie touches my life on a daily basis. I want to say again how amazing I think you and Peter are for allowing us to join you on this journey and how you both have given me strength in dealing with some difficult circumstances. I hope you don’t mind me sharing this with you but I thought you should know how you all have touched my life."


http://www.neshaminy.k12.pa.us/neshaminy/cwp/view.asp?A=3&Q=397792

Wednesday, June 16, 2010

Wednesday, June 16, 2010

Tonight's picture was taken in the spring of 2007, during Mattie's 107th day in the block room at the Resurrection Children's Center (RCC). Behind Mattie, you can see his teacher Kathy, and to the left you can see Zachary, Mattie's close buddy, at the Lego table with Mattie. Mattie flourished at RCC, and now that I look back on the whole experience, I know I made the right choice to select a co-op preschool, in which parents are required to actively participate in the classroom and at the school. This gave me priceless time to spend with Mattie and to interact and to get to know his friends. The irony was during Mattie's first year at RCC, he was in the Pretend room with Margaret and Lana. I always noticed that during open room time, when the children could freely move about to different classrooms, Mattie avoided the block room. I never really understood why, but I knew whatever was in that room, Mattie had to be introduced to it and to overcome his fears. The following year, Mattie entered the block room, and Mattie acclimated to it beautifully. In fact, it was hard to imagine that he ever avoided the room to begin with, since the room was about science, exploration, hands on activity, and BUILDING! Mattie was a master builder in many ways, and I will never forget the nurturing teachers Mattie had and the support they gave me then and now.

Poem of the day: Grief Lasts by Charlie Brown


On the surface
I may look fine
Surrounded by
All that is mine
But look closer
And you'll see
What's really important
Eluding me
My son, my child
Is gone from my life
No more a mother
Pain cuts like a knife
Surrounded by his things
His clothing, his toys
I'm still losing the "feel"
Of my little boy
In my home I'm surrounded
By all of his "stuff"
And memories come unbidden
Grief makes life tough
Hugs and kisses
I can no longer feel
Sometimes I wonder
Which world is real?
I may sound fine
But the grief's all inside
And if you are patient
I won't need to hide
If a friend to a griever
You are willing to be
Just come and sit
And grieve with me.

Today is day five that Peter is in Rwanda. He wrote to me to let me know that he was invited yesterday out to dinner with a colleague. Peter assumed, like our American dinners, that this was going to be a working dinner. To Peter's surprise the dinner was simply that, a time to socialize and connect and to watch the World Cup game with a colleague. I continue to be in awe of what Peter and in essence I am learning from his trip thousands of miles away. Rwanda is considered a developing nation, yet, in many ways, the culture is far more advanced in terms of understanding the importance and value of social connections. I think this trip came at an important time in our lives, and I enjoy hearing about Peter's experiences and insights each day.  I joke with Peter, because each day I ask him to share with me his, "thoughts from Rwanda!"

When Charlie sent me this poem today, it instantly resonated with me. Grief lasts! A great title, because in two words it was able to capture my feelings. In particular two lines jump out at me. The first one is, "I'm still losing the feel" and the second is "Which world is real?" The greatest fear in dealing with grief is "losing the feel." As each day passes, the tangible Mattie becomes more foggy. I find myself desperately grasping to remember his voice, how he called me, and what it was like to hold his hand, or give him a hug. Mattie was a very affectionate child. He liked to hold hands with me, and was always telling me he loved me and out of the blue would give me hugs. I did not ask him for these things, he simply did them. We were incredibly close, and it is heartbreaking to know that this closeness is gone from my life. Such love, respect, and innocence can not be replaced. Some days I wonder if our intense bond with each other was because I was raising an only child, or did we simply understand each other so well because we were so alike? I really don't know, but I do know not having this force in my life is a loss beyond explanation. Charlie's line, "which world is real," is a question I ask myself during certain points during this grief process. As I was telling Ann today, for my mental sanity there are times during the day, where I try to busy myself with a task to simply push myself into my current world, a world without Mattie. Yet as soon as I come home and see Mattie's pictures and things, I am instantly transported back to my reality. The mind is funny that way, in a way it shuts down at times because living in intense grief each hour of the day is emotionally impossible.

I did some chores this morning and then headed to Ann's house. I wanted to plant some flowers in her garden, and today I had the pleasure of finding dwarf sunflowers to add to her flower beds. When Mattie was sick, many people would bring me sunflowers, and these sunny and happy plants made me feel better. In a way planting the sunflowers today is a reminder of the hundreds of people who reached out to my family during Mattie's illness. For every meal, every toy, every listening ear, and every act of kindness, I have recorded them all in my head. The sunflowers that I planted today represent all of you, and like our beautiful community, I hope these sunflowers thrive in Ann's garden year after year.

I had the opportunity to spend time with Ann's children today. They taught me a family card game, and they were quite patient as I was trying to figure this all out. Not only were they good teachers, but they gave positive feedback along the way to me. To me that whole interaction was fascinating, because to teach someone a game or a task requires a certain level of maturity and a certain amount of concern for the individual you are working with. Any good educator is probably nodding in agreement with the notion I am expressing. A lot can be learned about children in how they play a game or explain it to someone else. So I saw a very mature side to these children today and I told them numerous times how I was impressed with how they were teaching me. Ann and I also had the opportunity to see Mary together today. Mary remembered our fun last night quite well, and I was so happy she did! Tanja and I were still talking about this comedy show last night through e-mail today.

I had dinner with Ann and her family tonight. Dr. Bob introduced me to their iPad, and after working on it a while I was beginning to get the hang of this touch screen system. Bob made an interesting comment, in that he said the iPad allows for a group of people to socialize around the technology. That caught my attention, because he is correct. If I were working on a desktop or laptop, it is hard to move the screen around for others to see. But with the iPad, it is light, and has no wires or plugs. So literally, it is almost as easy as passing around a sheet of paper for others to see. Peter is the technologically savvy one in our family, but even this tool caught my attention.

After dinner, Ann suggested we go for a walk. Our last walk, weeks ago, practically wiped me out physically for a week. So I told her I couldn't do her neighborhood hills, until I got into a better walking routine. So we walked to St. Stephen's track tonight and walked around the track. As odd as this may seem, walking on this track reminds me of Mattie. It almost seems like I am visiting a special place touched by Mattie when being on the track. I am not sure why I never acknowledged this feeling before, but it struck me tonight once our walk was over. During our walk, Ann asked me how I would counsel myself, or maybe someone like myself. It was a good question, and humbly my response now is that prior to experiencing Mattie's loss, I most likely wouldn't have grasped the profound and intense feelings of losing someone so close to you. I naturally understood death associated with age, but I never personally felt traumatic grief. I am more humble now, because in reality there is nothing a mental health professional can do to help someone in my position. The best possible thing one can do is to listen, be there, not be judgmental, and though we all have the need to instill hope in others going through pain, this forced hope can be received as disingenuous and also inappropriate. I do not know how I will find hope again (but I have to find it for myself, it can't be given to me), I don't know when it will be time to give away Mattie's things, and I don't know what my next year holds for me. I simply don't know, and I have to be okay with this honest answer right now.


However, walking at night after dinner, reminded me of my summer vacations to Italy. Like Rwanda, Italy also operates at a different pace. I recall as a child after having dinner, my family and I would walk the streets of Sorrento, passing people and shops. At night, the town came back alive and though I was walking on the streets of Alexandria tonight, I find it funny that the memories of a happier time popped into my head.

I would like to end tonight's posting with two messages. The first one is from our friend and Mattie's oncologist, Kristen. Kristen is a new mom, her son was born in the end of May. Kristen wrote, "As my Tuesday runs into Wednesday I want to let you know I am thinking of you. Parenting is a difficult skill which you both demonstrated during the most strenuous of times with amazing grace. Everyday I so much appreciate all you did for Mattie. Thinking if you on this day and everyday."

The second message is from my friend, Charlie. Charlie wrote, "As we've been discussing over the past few days, Peter is seeing first hand what the human connection means during his time in Rwanda. I see it in my work at school. My students are all from other countries where the physical and emotional connection seems to be stronger than it is in the US. What I've found is that it is critical to help my students connect somehow to someone in the first week of school or they drop out. The connection can be to me, the counselor, or to one of their teachers or to another student, but it has to happen quickly or the student feels isolated and leaves within a couple of weeks. I've adjusted a number of things since I started as the counselor to try to make that connection happen and it usually does, but sometimes it fails and I mourn the departure of those students and their lost opportunity for an education (and I hope they will try again). The US has become a very impersonal place; we no longer seek to do business with those we have personal connections with; we rarely hug or shake hands or make any physical contact. That used to be a big part of any encounter between friends and even business associates. Now I notice that many people have lost the skill or never learned how to properly shake hands and it makes me wonder what else we will sacrifice to the technology of doing business at a distance. I am glad that Junko is in your life and that she understands how to "sit in grief" with you and allow you to be where you are on the path. It is truly a wonderful gift. And speaking of gifts, what you continue to do for Mary is definitely a gift and I hope that the joy you give her comes back to you a hundredfold. I have to say I love Nancy's poem and I am pleased by your courage in posting it; I hope that it will become truth for you. I hold you gently in my thoughts."

Tuesday, June 15, 2010

Tuesday, June 15, 2010 -- Mattie died 39 weeks ago today.

Tonight's picture was taken on April 4, 2007, Mattie's fifth birthday. Mattie had his party at the National Zoo. It was a party to remember because there was torrential rain for the whole day. The zoo's policy is the party goes on rain or shine. We literally walked about 15 children through flash flood conditions for an hour. We were all drenched! However, the kids seemed to LOVE it. They felt it was an adventure. We had the zoo to ourselves (because of the intense rains), and for some reason all the animals were out and enjoying the rain, the lions and tigers too! You can see that Mattie had a Lightning McQueen cake, and he was actually very excited about his big day.

Poem of the day: Not To Worry by Jesse Stoner


Time passes by, sometimes in a hurry,
Our thoughts, our family, but not to worry.
Sometimes you feel sad, happy, or all alone,
But not to worry, there’s a special home.
Our beliefs, our feelings, we keep within,
But it all comes out,when we think of him.
The way he laughed, his smile, his face,
But not to worry, there’s a better place.
He’s gone forever, you think, what to do?
But not to worry, he’s always with you.
He might be gone, but we’re always here,
We’ll share our love, and pass the fear.
Know he’s happy, know he’s free,
But not to worry, let it be.


Peter's fourth day in Rwanda sounded very memorable! Rwanda is six hours ahead of Washington, DC. So when I am waking up, Peter has completed a good portion of the day. Peter told me all about the certificate signing ceremony he was invited to today. He said it was a very impressive and special event. Peter was invited to say a few words to those receiving certificates, and he said they all had a lovely lunch and many pictures taken to capture the moment. The change of pace and culture, I believe has been very good for Peter. As he said today, "We're (meaning in the USA) so used to rush rush rush and never take the time to stop, process what we are experiencing and feeling, and present it." I imagine business in Rwanda is like what business used to be like in the US at one time. At one time making a live connection was vital to our world of business. Time had to be invested in getting to know the person behind the employee. Now with the age of technology, and rapid fire requests and expectations for responses and solutions, we have de-personalized the workplace. Some may say this is advancement, but I question that, because once we start devaluing personal connections and dehumanizing the work experience, we instead breed a culture devoid of many of the aspects that are so vital to our survival. In any case, I think Rwanda was a step back in time for Peter, a time when human relationships mattered, and people had to slow down to build those solid connections. I am so happy Peter had this chance today. Funny how one has to fly to Rwanda to experience what should be present in all our workplaces.

Today is the 39th week that Mattie has been gone from our lives. I had a busy day today, which I will tell you about in a minute, but when I got home tonight, I was struck by all of Mattie's things around me. Naturally they have been there all along, but there are days, like tonight, where I can't ignore them. It struck me as I looked at Mattie's clothes, toys, and room that I am living a double life. A life when I was Mattie's mom, and my life now. To the outside world, I would gather that most people would say I am functioning very well. In fact the adjectives I have heard people use to describe me recently are "happy, healthy, relaxed." When I hear these words, I laugh internally! I suppose I laugh because remember a book can't be judged by its cover. Do not confuse external appearances with what is going on or being felt inside. I assure you, you only hear about 40 percent of what I am feeling inside on any given day. What most upsets me is I try to remember what Mattie sounded like, and the memories we had together. As time passes, it is harder and harder to keep these memories alive. It is hard to describe, because on one hand I remember everything, and yet on another, I struggle to remember the more subtle aspects of our love and relationship.

I began my morning with a phone call from our bank. The bank was calling to tell me about suspected fraud on my bank debit/credit card. As the representative read me the charges, I agreed with her, I certainly was not in Arkansas and made none of the purchases she was listing off to me. Naturally that meant I needed to cancel this card and get a new one sent to me. However, the bank's policy was I need to sign an affidavit and drop it off at a local branch and I have a ten day time period to sign this form, otherwise I would have to pay all the fraudulent bills! Needless to say, I dropped everything to complete the forms and walked to my local branch.

I had a delightful lunch today with Junko! We talked about her family trip to Canada and a host of other things. Junko and her husband, Tad, have and continue to be extremely supportive of Peter and I. In fact, Junko is one of the people in my life that I truly understands the vast devastation in my life and also has no expectations or opinions about when I should be feeling better. Which is actually very sensitive and supportive. It is supportive because the last thing I need right now is a lecture on how I should be doing, feeling, or progressing on in the world. There is no pill, no amount of talking, or emotional support to change my situation. It isn't easy to see a friend sitting in this, but in essence that is the gift. The gift to be understood as I walk through this grief journey, and to not walk it alone. It isn't a journey that everyone can make with me. Mostly because it isn't fun, there is NO quick fix, and the reality of my situation is hard to grasp and accept on a daily basis. I am aware of that, but remember, this is my life. I can't walk away from it at the end of the day. Junko and I had a tasty lunch, at Founding Farmers. A restaurant she introduced me to while Mattie was hospitalized. Junko would always bring me these tasty lunches and finally one day I asked her where she got them. So in a way, meeting at this restaurant is symbolic of the bond of friendship we nurtured through our year at Georgetown Hospital.

In the later part of the afternoon, I headed to see Mary, Ann's mom. I brought Mary a Dunkin Donut's bagel like she requested, and she devoured it. Tonight Tanja also visited Mary. Mary delighted in hearing us chat! She was VERY engaged and participated! The irony is she enjoyed this time so much she did NOT want to go to sleep. Tanja and I did not leave Mary's assisted living facility until 9pm. Mind you Mary is normally in bed and sleeping by 6pm! This should give you some understanding for how much she enjoyed this social stimulation! When we finally got Mary physically into bed, she just couldn't turn off. She was laughing and having a good time. Tanja and I joked that we were most likely going to sleep at the facility because we could see Mary did not want the party to end. Mary was telling all sorts of jokes, and at one point we called Ann to enlighten her about her mom's energy! She was the life of the party tonight, and since it is SO rare to see Mary this way, I think all the assisted living staff were concerned that something was wrong. There was nothing wrong, and as Tanja said, this type of humor and laugher are very good for Mary and all of us really. Tanja had a full day of work today, before even visiting Mary for five hours. But I have a feeling none of us will forget this five hour party! My greatest hope is Mary won't either.

I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "I thought about your conversation with Peter regarding the certificate and the ceremony at the end of the training session. I think part of the difference is our view about education. Education is relatively easy to come by in the US and so it is not nearly as valued as it is in other places where most don't get past primary grades and many get no education at all. We offer so much training and so many "second chances" in the US that people assume it can be done anytime without much effort. I often tell my students who complain about how long it takes to get a HS diploma, that the value you get out of doing something is directly related to the effort you put into getting it. If we hand you a HS diploma without asking you to complete all the requirements, the diploma is worthless and no longer signifies anything. It takes a while but usually they come around to understanding that. I am glad you had the opportunity to spend time with Mary and I do appreciate your comments about being a nurse versus being a doctor. So many doctors are now relegated to being pill/drug prescribers instead of physicians to the their patients that I no longer understand the drive to go to medical school and I do understand why so many doctors appear to "burnout". They have lost the human connection to their patients and so the work becomes very unrewarding. Nurses too are often overworked but as you said, their emotional connection to their patients and their ability to make a significant difference in how their patients feel changes the perspective. Although you are not a nurse you are certainly a ministering "angel" to Mary and those you work with. May it always be so. As always, I hold you gently in my thoughts."

The second message is from a fellow SSSAS mom and our friend, Debbie. Debbie wrote, "Every evening for all these months, I have continued to read the Mattie blog before going to bed. As always, if you post late, I go to bed thinking of you and wondering how your day has been. And many evenings, I have composed a draft message to you, either in my head or on my laptop. Tonight, I decided to actually send a quick email. Mattie and his mom changed (and continue to change) my perspective on many things! I am deeply grateful for this. I love the photo of Mattie running with his fellow soccer campers. Though I have many mental images of Mattie when he was not well, mostly from the blog, it is the healthy, happy Mattie that is often in my thoughts these days. I had bought a package of Mattie's sun note cards and some stamps last year. I guess I considered them limited editions, and was hesitant to use them, except for very special notes. In fact, I only wrote two cards, one to Alex at camp and one to a dear friend who prayed for Mattie every day of his illness. I am happy to have a larger supply of cards and stamps and to feel free to use them for correspondence, though only for close friends and family who will appreciate how precious they are. Thank you, Vicki."


The third message is from my friend and colleague, Nancy. Nancy wrote, "I just caught up on your wanderings over the last few days and wanted to send my Tuesday greeting early. You are a blessing to Mary and are helping your dear friend, Ann. I love reading your summary of your time with Mary as it brings a smile to my face. She is an indomitable spirit and gives each of us pause to appreciate what we have, in the moment. I remember how a sweet would be a wanted treat for my Mom, too. I guess as with children, it's a sign of care and love, which I know is your thought as you decide what to bring. I hope that Mary enjoys her bagel today. Skype is a wonderful invention. It is one of the few new conveniences that I look forward to using. We are getting cameras for the kids so that we can see them while we are in Florida. My daughter, Cindy, wants us to use it here, too. I think it will be cool! I agree with your thoughts regarding Rwanda and their philosophy about training and celebration. The western culture appears to get too caught up in material possessions and in some circles forgets about the human touch/experience. For many, it takes too much time. Your photos of the Walk are wonderful examples of care and concern for others. The shots yesterday of the children has been something that I've been discussing with Marv. It teaches the children, in a manageable way, that giving to others is a life skill and important to the future of our humanity. Bravo to everyone of the Foundation's Board and especially, kudos to Peter and you for your vision and love of Mattie. I don't know if this poem is fitting for you now, yet, I'm taking a chance in sending it.. If you think it helps, I'm glad. If not, then please put it away."

CHANGE by Nancy Heller Moskowitz

I awoke this morning
To greet the day, filled with promise,
A freedom, a complete sense of choice,
A realization of fleeting insecurity
Only to be replaced
By calm and soothing embrace.
This has been a long journey.
One filled with peaks and valleys
Yet, the precipice of understanding
Too amazing to comprehend,
For I have mourned dreams,
Until this moment, where life becomes a friend.

Monday, June 14, 2010

Monday, June 14, 2010

This picture was taken in the summer of 2007. Mattie was five years old, and was enrolled in a soccer summer camp. The camp met daily for one hour a week. Parents were encouraged to stay, and you can see Mattie in the blue shirt running after a ball. His buddy, Gabe (red shirt and baseball hat), was right along side him. Gabe and Mattie met at preschool and had a fun time connecting in camp.


Poem of the day: The Dream by Charlie Brown


Son, I saw you in a dream
And we were holding hands
We are forever connected
Heart to heart with golden bands
At first you were strong
Healthy and well
But I saw in my heart
The cancer death knell
Even though you are gone
Somehow you're still here
And when I least expect it
You show me you're near
So my beloved young son
Be my guiding star
Visit me in dreams
And don't stray too far
In the changing of seasons
I will watch for your signs
Bugs, birds and butterflies
Show me your designs
I know you are here with me
No matter where I go
Watching me from up above
Through heaven's wide window.

I began my morning with a conversation through Skype with Peter. He filled me in on his meetings, and in passing he mentioned he was going to a certificate signing ceremony tomorrow. I naturally had no idea what he was talking about, but since he made it sound important, I felt the need to seek clarification. It turns out, that when an employee completes a training workshop in Rwanda, at the end a certificate is received. However, you don't only receive the certificate, there is a ceremony and a party associated with it. At first, I couldn't believe what I was hearing, because I thought to myself, if every time in the States someone completed a workshop or training, a certificate was received, there would be parties every day. But then Peter explained to me that Rwanda takes great pride in any form of education and such accomplishments need to be acknowledged. That stopped me in my tracks, because what I could hear him in essence saying is that there was great pride each person took in the training, and the completion of the training. It was not training for training sake, or going through the motions. In a way the training was a reflection on the character of the person. That type of work ethic and pride, I feel, is lacking in parts of our American culture.

I had the opportunity to have a lovely lunch today with Margaret (my friend and Mattie's first preschool teacher), and Margaret's mother in law, Helen. We met at the famous and historic Tabard Inn in Washington, DC. It was an extremely hot day in DC, and I decided since I don't like parking in DC, I would take the Metro. That was an experience to remember. The train car I was on had absolutely no air conditioning. It felt like I was traveling in a moving oven. If that was not bad enough, when I got out at Dupont Circle, the escalators up to the street were not working. I literally walked up 130 steps in the intense heat. I passed some people along the way, who needed to stop on the steps and catch their breaths. Totally understandable!

However, the trip was well worth it. The Tabard Inn was like taking a journey back in time. It had a European elegance to it, that we so miss in most of our daily dining experiences. The food and company were wonderful, and as always when I am with Margaret, we never have a lack of conversation. It was special to meet her mother in law, who is 86 years old, and is quite spunky with a positive attitude on life.

I spent the evening with Mary, Ann's mom. Mary was happy to see me, and enjoys having dinner with me sitting by her side. After dinner, I explained to Mary that I had a conference call I had to participate on. So I told her I would stay at the assisted living facility and make the call, and after I was done, I would come to her room and say good-bye. After an hour's call, I packed up my things and headed to Mary's room. Mary was in bed, but wide awake and awaiting my arrival. She said she couldn't go to bed unless she said good night to me. I brought Mary a piece of a chocolate mouse cake tonight and she reflected on that and then made a request for a whole wheat bagel tomorrow. She seemed excited by that prospect. As Mary said good night, she asked me two questions. She wanted to know if I ever considered being a medical doctor? She went on to say that I have a very good bedside manner. My joke in response to her questions was I should have been a nurse. I think in Mary's day medical doctors may of had the time to spend to talk and get to know patients, but now it is a number and time game (for many doctors, certainly NOT all, I met the rare few at Georgetown). So if I had to enter the medical profession today, I would choose to be a nurse. From my observation, nurses work extremely hard, and do an inordinate amount of the work within a hospital setting, but the component that is near and dear to my heart is the emotional connection a nurse can make with his/her patient. Mary just listened to my response. Her next question, was not really a question, but more of a statement. Her statement is that I must be an angel! I told her I wasn't an angel, but that I am happy she feels comfortable with me when Ann is away.

I would like to share some more candid photos of children from the Mattie Miracle Cancer Foundation Walk. There are so many wonderful photos to select from. Hope you enjoy these!

 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "How wonderful that although Peter is away he can connect with you and share his trip via Skype. I've read some books about Rwanda and as Peter says, they do call it the land of 1000 hills and one million smiles. Although life in Rwanda is hard and there is little technology and few if any, time saving "devices", they seem to have far more time than we do in our society to personally connect to other people. I am sure Peter will return with good "people" stories to share with you. I know Mary was glad to see you yesterday. Funny how she focused on golden oreos in that drink, it has to make one wonder. As I practice today, I send you my energy to help you continue along your path while Peter is away. I hold you gently in my thoughts."

Sunday, June 13, 2010

Sunday, June 13, 2010

Tonight's picture was taken in May of 2005. Peter and Mattie built the step stool in the picture together. Mattie wanted a John Deere tractor stool, and Peter designed the whole thing by hand and Mattie did some sanding and painting. They were both very proud of their teamwork. If this stool could talk, it would have many tales to tell. It would report about the hours spent potty training, learning to brush one's teeth, and the list goes on. Needless to say, this stool captures many memories for me of Mattie's toddler and preschool years!

Poem of the day: Tiny Angels

Tiny Angels rest your wings
sit with me for awhile.
How I long to hold your hand,
And see your tender smile.
Tiny Angel, look at me,
I want this image clear....
That I will forget your precious face
Is my biggest fear.
Tiny Angel can you tell me,
Why you have gone away?
You weren't here for very long....
Why is it, you couldn't stay?
Tiny Angel shook his head,
"These things I do not know....
But I do know that you love me,
And that I love you so."


Most likely you do not know that when Peter goes out of town, our cat, Patches, becomes extremely anxious and more unstable than usual. Patches suffers from hyperthyroidism. Which in theory should be treatable. However, after spending a great deal of money on a radiocat procedure (which was INEFFECTIVE!), we are still unable to find the right thyroid medication dosage for her. Even medicated, this condition makes Patches constantly hungry and thirsty. In addition, she has an inordinate amount of energy and is hyper at night. Patches gets up at around 2 or 3am each day and literally whines and howls (yes I know she is a cat, but this calico howls!). Typically when Peter is home he is able to calm her down and therefore she doesn't disturb my sleep. But when Peter is gone, I am left to my own devices to deal with her, and unfortunately, I am not a cat whisperer like Peter.

Patches had me up at 3am the night before, and last night, she had me up at 5am. At the moment, as I write the blog, she is resting comfortably on Mattie's bed, curled up next to "Sunshine," Mattie's stuffed pet albino snake. Got to love this cat!

I began my day talking to Peter through Skype. The beauty of technology! We spoke for about 20 minutes. Peter told me about his airplane trips and the heat in Rwanda. Unfortunately the hotel has NO  airconditioning. A foreign concept to most of us living in Washington, DC. Peter told me that Rwanda's motto is the land of 1000 hills and one million smiles. Naturally I couldn't help but ask him whether everyone around him was smiling?!!! One of the topics we discussed was how to spend July 4th. He did not give me an answer per se, but his comments were a riot. I titled his response as "thoughts from Rwanda," since I felt as if I was hearing a profound documentary through the computer lines.

Peter told me, like me, he rarely dreams of Mattie. However, on his plane trip to Brussels, he was in and out of consciousness because he was so tired. He recalls dreaming of Mattie. The first part of the dream Mattie was healthy, but he could only see things in his dream at Mattie's eye level (so in essence from Mattie's perspective). Peter couldn't see whose hand Mattie was holding. But he assumed it was mine. In the next part of the dream, Mattie had cancer. Just before Peter woke up from the dream, Mattie leaned into him and they rubbed heads together. I told Peter that I thought that was definitely a sign from Mattie. Mattie was reaching out to him and letting him know that he is with him always, even as he traverses from Washington, DC to Rwanda. I found the story very touching and moving and also fascinating how Peter saw Mattie healthy and with cancer.

I spent a portion of today visiting Ann's mom, Mary. A few days ago Mary saw a Dairy Queen (the ice cream store) commercial. In the commercial they showed a picture of a strawberry blizzard, with golden oreo pieces mixed in. This picture caught Mary's attention and I made note of that, so today, I went to Dairy Queen and was happy to deliver this treat to Mary. She devoured the whole thing and she said it was delicious. Naturally I can't think about golden oreos without thinking of Mattie (who was in love with that cookie). Mary had a rough afternoon but she did connect on the phone with Ann and also her cousin, Helen. These calls perked her up and this outside stimulation always gives us a lot to talk about. Before I left for the evening, Mary had two comments for me. The first comment was that she will never forget how well I cared for her husband when he was so sick and dying and the second comment is she wanted me to know that she considers me a good friend. A friend who really cares about her. It is ironic as I reflect on Mary's comments, my dad sent me the following quote today:

"You can't live a perfect day without doing something for someone who will never be able to repay you." By John Wooden (1910-2010; the basketball coach for UCLA for 27 Years)


I would like to share more photos with you tonight from the Mattie Miracle Cancer Foundation Walk on May 23, 2010. These photos capture the magic show that was performed at the event.

Left: The Magic Man (Bob Weiman, Mattie's head of the lower school, St. Stephen's and St. Agnes School) with his fifth grade students as they set up for the show.

Left: You can see the show attracted quite an audience.

Left: The American Flag trick! One of Mattie's favorites. I remember Bob teaching Mattie this trick in the hospital!

Left: Vicki with the Magic Man















I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am glad you had a good day yesterday and that you spent time with Carolyn, Ellie and Gavin. Although spending time with other people's children is hard, it is also healing. I believe that your time with Mary is also healing for both of you although those visits as well can be difficult. I do agree with Mary that G-d sees all the good things you do and wants to help you through your grief. Today as I attend a special workshop that is supposed to be about healing I will be thinking of you and hoping that the next steps along the path are easier. I hold you gently in my thoughts."