MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 SUCCESS!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

July 10, 2010

Saturday, July 10, 2010

Saturday, July 10, 2010

Tonight's picture was taken in May of 2002. Mattie was just ONE month old. I was sitting outside with him on our deck, and Peter snapped a picture of him. Mattie was always a very alert and curious baby, and even at a month old, he always looked like he was giving things great thought.

Poem of the day: Rain by Charlie Brown

Raindrops like G-d's tears
Streak my windows
As I contemplate
The gray skies
Weeping the loss
Of my son, my boy
In rain I see tears
In shadows, sadness
Will the rainbow of
G-d's promise
Lighten my load?
I wait for the sun
To chase the shadows
Of grief from my soul.
That wait encompasses my eternity.
I will always miss you.
 
Charlie is indeed correct. Rain does make me more contemplative and reflective. How I would love it if when the sun came back out that it would signify a change in my feelings. But I know the "shadows" I have, even the sun can't overpower, and like Charlie mentions they instead do "encompass my eternity." So the question becomes how do you learn to live with the shadows and the pain of missing someone so much?
 
I woke up feeling a bit better than yesterday, but I decided to go back on antibiotics. I had the opportunity to have tea this morning with Ann, before she left on a long car trip to Boston with her children. Ann is visiting her family for the week. So we got together, in a way, to say good-bye. I would imagine it is most likely understood by my readers, though I don't state it outright, that Ann gives me support on a daily basis, and in a way, she gives my life direction in a time when I feel quite directionless. So when she goes out of town it is always an adjustment process for me. Ann sent me a prayer by e-mail yesterday, a prayer in honor of St. Theresa. I responded to her that I appreciated the prayer, but had trouble accepting the contents within the prayer. I told her fortunately I have her around who can say the prayers when I can not. Part of her response to me was "I know God has amazing plans for you, and I will be here to help you realize them." I am not sure what your reaction is to reading this response, but I was deeply touched by it because it made me feel as if she is in this through the long haul with me. Despite how I feel, Ann has faith and sees strengths within me, and through this encouragement provides me with hope. Hope is an intangible factor she has been providing in my life since July of 2008, a gift which I consider priceless. When Ann began her car journey today, she called me. She told me in the past when she would go on long car trips, she would call her father throughout the trip to let him know that "the Henshaw Express" was leaving one State and entering into another one. So far, I have heard from Ann through Maryland, New Jersey, New York, Connecticut, Rhode Island, and now Massachusetts. She did not state it specifically, but I am honored that if Sully (her dad) is no longer alive to share in this tradition, that she values our friendship enough to share it with me. In fact, I think we talked through most of Connecticut, and in the process I got to hear that Katie finished a book during the car ride and I could hear her excitement in the background.
 
Ann relayed a story to me about her daughter, Abigail. When Ann and Abigail went into the Lego store in the mall recently, Abigail asked her mother whether Mattie ever built a star wars Lego set. Ann's response to her was most likely yes, since Mattie really completed almost every set while hospitalized. Abigail then told her mother that she is sure that Mattie has access to all new Lego sets in heaven. He doesn't have to pay for them, and he gets them before kids on earth do. It was a very sweet story, and I always find it fascinating how Abigail has no trouble talking about Mattie, and remembering his likes and interests. Mattie is not only a memory to her, but a friend she seems to hold deep within her heart.
 
Our ten year old friend, Katharina, continues to be doing well today (after her surgery yesterday), and even took a short walk on crutches outside her house. On their walk, Katharina and Tanja (Katharina's mom) spotted a monarch butterfly trailing after them. Tanja was certain this was Mattie cheering Katharina on, and following his wheelchair along the journey. Katharina is borrowing Mattie's wheelchair, and seeing that wheelchair alone reminds me of Mattie's battle. In Tanja sharing this story with me, it really hits me how Mattie has changed our lives. How the beauty of butterflies are noticed, appreciated, and most of all serve as a reminder of my courageous son. When I hear about how Abigail and Katharina remember Mattie, I am certainly touched in the moment, but then when I further reflect upon it as I write this blog, I find that it does bring me to tears. How does a seven year old die so tragically, and yet in only seven short years, he has made an impact on others? The answer is because he was Mattie. I told Ann today over tea that I have already had my great life's accomplishment. She asked me what that was, and I told her it was having and raising Mattie. She seems to think I have other things still yet to accomplish, perhaps!
 
Peter asked me tonight if I was aware of how Mattie would indicate by hand gestures his love for Peter. I told him that I did remember, but I clearly did not know the full signal. Mattie would point to his eye, then touch his heart, and then point at Peter. To in essence say, I LOVE YOU. However, there was actually more to the message. After Mattie would point to Peter, he would stick up two fingers, and then stick up five fingers. The two fingers meant "so" and the five fingers meant "much." So the gesture literally translated to I LOVE YOU SO MUCH! That was news to me, and when Peter was sharing this story with me, I could tell that he was thinking about Mattie today and being reflective. It is funny how you spend so much time with one person, like I did with Mattie, and yet can miss subtle gestures and movements. I am so happy that between Peter and I, we pretty much have them all covered and captured in our hearts and minds.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "It seems like you and Peter are trading illness back and forth. I hope that you both get better soon. As you said sadness and sickness is a bad combination. I am sure that the licensure board appreciated having you back; you always seem to approach even the most difficult tasks with both humor and a get it done attitude. I too have noticed that the medical community among others now sends things out marked urgent when they truly are not; supposedly they do this to make people respond but I suspect that eventually we will become immune, especially when the emergencies usually turn out not to be such and when we do need to respond quickly we won't. Not a good thing and very reminiscent of the "boy who cried wolf." Apparently the staff has not read their fairy tales. I am sure that Tanja appreciated your concern; it is hard to wait for a loved one to come out of surgery and concentrating on a book or a program is very difficult to do. Pleasant company, whether by text or in person is always appreciated in those settings. I do hope that today finds you feeling better; I dedicate the energy of today's practice to you and Peter getting well. I hold you gently in my thoughts."

July 9, 2010

Friday, July 9, 2010

Friday, July 9, 2010

Tonight's picture was taken in May of 2006. Mattie had finally outgrown his crib, which also transformed into a toddler bed. So before we disassembled his crib, we took a picture of him in front of it. He was thrilled to be moving into a big boy bed. I naturally had all sorts of fears that he would roll right out of the bed, but that never happened. He took to a bed like a duck to water. The bed he moved into had hand made bed posts. Peter's grandfather made the head and foot boards. He made a set for Peter's mom and one for Peter's aunt when they were growing up. These bed posts were then passed down and used by Peter and his brother when they were little boys. Some how we landed up with both sets. Mattie enjoyed telling people that his bed posts were his dad's when he was a little boy.

Poem of the day: BUTTERFLIES, NATURE AND YOU by Nancy Heller Moskowitz


Puddles were fun from early on,
They provided you splashes of joy.
You loved them, my tiny boy.
The trees, the earth, all meant something fresh,
Viewing the world as only a child can see.
I am glad you gave that to Dad and me.
We hung your flag this July 4th, waving in the breeze,
It greeted me as I looked out the window,
Reminding me of the rockets red glare and you.
Sometimes, your chimes sing softly,
To remind me of the way that life used to be.
And then, that day, a butterfly loomed around with grace,
Touching Speedy Red, our plants and caused me to say
You are with me today!
Twice in one week, a butterfly swooped down when I was sick.
Patches helped, but not enough, only you could do the trick.
I see the world differently, not sure of what that means
As others, too young, leave loved ones behind.
It dashes many dreams.
So butterflies and wind chimes continue
To show me the beauty of a loved one
Who can no longer be here with me.

I consider myself fortunate to have Charlie and Nancy in my life who can put my feelings into poetry. This is not a skill I have, but I greatly admire it. When I woke up this morning, Peter had left me out another article to read. In a way, I found that very sweet, because it made me feel that he thought about me before leaving for work. Today's article was not an obituary but a theatre review in The Washington Post of Mary Poppins. The title of the article is "Not so super-califragilisticexpialidious." I was amazed by the title, and thought I read it wrong at first, until I read the scathing review and realized the title fit his description. I was so insensed by the article, that I wanted to write to Peter Marks, the columnist. He calls the show a lumbering show and takes issue with the stifled household and glum domestic scenes. I am not sure where Mr. Marks is living, but every day life can be glum and very troubling for many of us. Yes despite the family's hardships, they rose above it, found the importance and meaning in their lives, and re-established connections and bonds with each other. If a play can accomplish all of that, then it is not "bland" or "burdensome." Sure it may have taken a special force like Mary Poppins to accomplish this, but that isn't very different from real life is it? Where we rely on friends and our family members to guide, support, and direct us in times of great upset. To me, this is a classic Disney tale of good rising over evil, but done in a vivacious, psychological, and memorable way. I am troubled when good theatre is panned, and shows with a lot of effects and LITTLE substance are touted for years.

I had a four hour licensure board meeting today. The composition of the board members has changed over the years. However, the staff and I have remained consistent. So in essence I am the board member with some sort of historical knowledge. Serving on the board happens to be one of the professional activities I still enjoy doing. The board basically oversees and regulates the practice of licensed professional counselors in the District of Columbia. After the meeting today, one of the board members came up to me and told me she is thrilled I am back, that the board really missed me. I suppose it is my sense of humor that was missed because even though we deal with making difficult decisions and trying challenging ethical cases, I believe it is the atmosphere that I try to create amongst board members that is appreciated.

While in the meeting, I got a call from my urologist's office. During a break, I checked my messages and the nurse from the office left me a message marked, URGENT. Needless to say, I tried calling back and the office was closed for lunch. When I got home from the meeting, I called immediately. At which point the office staff said that all the nurses were on a lunch break until 2pm, and no one could answer my question. By this point, I was working myself up into a tizzy. Prior to Mattie's cancer diagnosis, I don't think this would have been my reaction to a message marked urgent, but now I can go into a panic mode within seconds and stay at that hyper alert state for quite some time. Clearly I must have made enough of a scene on the phone, that the nurse called me back within five minutes. I told her that when she leaves a message marked urgent on my phone that I begin to think there really is an emergency. She told me she does this with all her patients, because she has learned if she doesn't, they don't call back. What reasoning! I am happy to report there was no emergency in the end, but I assure you the psychological impact of this was more than I needed today.

As I was riding home on the metro, I started to get the chills. So I took my temperature, and I again have a fever, am feeling very tired, and have a sore throat. Peter and Ann want me to get back on antibiotics, and I will see how I progress through the night.

In addition to how I am feeling today, I was worried about our 10 year old friend, Katharina, who had a surgical procedure done on her knee. Tanja, her mom, and I were chatting back and forth by text messaging for most of the day. The surgery was to take place at 7am, but it did not happen until after 10am. It was a lot of waiting around for a child, but fortunately Tanja came prepared with things for Katharina to do. Tanja and I joked about the fact that she learned from the best, Mattie. Tanja entertained Mattie many times at Georgetown University Hospital, and knows quite well that things don't always go according to plan in a medical setting. When the surgery was completed, and it went well thankfully, Tanja thanked me. I naturally did not expect her to do this, but Tanja echoed many of the same feelings I have about my blackberry. She said that staying connected even electronically helped her. I COMPLETELY related to that feeling, which is why my blackberry is a vital part of my life. It is scary to wait for your child to be treated, and having someone else, even virtually, worrying with you, helps. I am not sure I would have believed that, but I lived it and I know it makes a difference.

The ironic part about the blackberry, is we all have different styles of communicating. As most of my readers know, I am no longer a telephone conversation person. Mattie trained me so well, that I naturally prefer text messaging and emails. However, as I wasn't feeling well today, Ann wanted to check in with me. She called and left several messages, but I would then respond to her by text messaging. I know this can frustrate her at times, which is not my intention. I think she was trying to normalize my feelings today because I have felt so tired and fatigued lately, I have begun to wonder if this is now just me, and this is as good as it gets. Ann tried to reassure me that I am indeed sick, and I have a fever to prove it. The combination of feeling sick and sad is not a good one for me.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "It is hard to understand why some people die before they have lived a full life time. While we acknowledge the disease or accident that has taken the life of someone, it doesn't answer the real "why" question. That answer is one that we don't get to know until we rejoin those we love who have gone before us. It is a hard thing to acknowledge, that we don't know the reason behind these untimely deaths and we don't know what comes after death either. Humans don't deal well with uncertainty, we like to know what will happen and we build routines to help us cope. That's fine but we should not let those routines blind us to the uncertainties and fragility of life. Judaism focuses on the here and now and the need to do kindnesses and good deeds while we are able to do so. In our prayer book it reminds us that our time is limited, it describes a long life as 70 years with many leaving much sooner. In our society we have tried to insulate ourselves from the reality of limits on life by pushing illness, older people and funerals into spaces that do not overlap our daily living space. By doing that we assume that death will not reach into our space and when it does we are somehow shocked. I am guilty of that just as much as anyone else and I have tried to work on that by reciting the morning prayer that reminds us that G-d has returned our soul to us just for today and it is our obligation to do righteousness while we can. Tomorrow is not guaranteed. There are no guarantees of how long we will live no matter how we diet, exercise or take care of ourselves, only that perhaps, we will live healthier while we are granted this time here in our physical beings. My heart and prayers go out to the family of Peter's colleague. I wish there were something that would help relieve their pain but as we all know nothing will do that. I hope they take comfort from the time he spent with them as a father/husband and as a community volunteer. I am sorry your visit to the spa did not work out to be as relaxing as you'd hoped. I too understand the needs of a new mom to get out but there are more appropriate places to take a new baby than a serenity room at a spa. Given the day that you and Peter both had, the tickets were certainly a blessing and I am delighted that you went and had a wonderful time. Joy is sometimes fleeting but like the glimpses of the sun in an otherwise very overcast sky, it is very precious when it appears. As I practice today, I send you the energy to help you cope with the sad news you received and I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "Your picture of the latest butterfly and the one a few days before speaks so much of Mattie. Yesterday's picture so cute and full of the future. With all of this, I was concerned to hear that you had a fever again. I guess that Peter and you are sharing the flu again. Please take care, chicken soup besides "a spoonful of sugar to help the medicine go down." I'm again reminded that some questions may never have a satisfactory answer, yet, messages do come in gentle ways. You spoke of others having judgments about the terms of grieving, your colleague, Martha, knows from experience that we can not let others guide us as we walk our own path. Walk carefully and gently."

July 8, 2010

Thursday, July 8, 2010

Thursday, July 8, 2010

Tonight's picture was taken in May of 2003. Mattie was a year old, and trying to walk independently. As you can see from the picture, it had just rained, and Mattie loved puddles. He was having a ball outside, and he saw Peter trying to take a picture, and Mattie gave Peter a big wave and was trying to say something in excitement.

Poem of the day: Searching by Charlie Brown

I search for you
In the wonders of nature
In each raindrop
That sparkles with
All the colors of the rainbow.
I search for you
In the song of birds
That you loved to watch
Splashing in the fountain
And calling to each other.
I search for you
Whenever I see a butterfly
As it circles round
Before it flies off
Just like you did
I seek the message in
All I see around me
But I still wish to hear your voice
See your smile
Feel your hugs
Nothing can replace that
And time will not fill that hole.

I have to imagine that by me sharing stories of Mattie and our battles with grief and loss that these stories are not only read, but in some cases internalized. My hopes are confirmed daily in messages I receive from Charlie and others in my life. Charlie's poem "Searching" highlights how I look to butterflies and signs from nature to reconnect with Mattie, to remember Mattie. But I see I am not the only one who has been affected by my stories. Carolyn (our friend, and chair of the raffle at this year's Walk) wrote to me today and told me that each time she sees a fluttering butterfly or hears wind chimes she thinks of Mattie too. Mattie has caused many of us to stop and see the beauty around us, things that I admit I used to take for granted because I figured they would always be there. But what experiencing death has taught me, is that waiting for the right moment to do anything, it is not only impractical, but it is ridiculous.

I began my morning by reading an obituary that Peter left out for me. One of his Arthur Andersen colleagues, who was only 41 years of age, died. This man struggled with lung clots and then brain cancer. He leaves behind a wife and four children. Peter is going to the funeral on Saturday. I am not sure what seems so wrong with this picture. The fact that we are reading the obituaries in the newspaper, or the horrible fact that we know people who are featured in them. Forty one year olds are NOT supposed to die. This was  a man who also volunteered in the community and was very active in his children's sport teams. After reading the synopsis of this man's life, I felt disillusioned. I feel deeply saddened for his family left behind, and I feel these untimely deaths have left me in a great quandary about life.

I went to a local spa today to get my nails done. What I like about this spa is it has a serenity room, where I normally go and sit and read. It is in a way a quiet haven where I don't hear noise or have to talk. While getting my nails done today, I literally fell asleep. I haven't been sleeping well at night, and therefore during the days I am absolutely exhausted. When I got to the serenity room to my surprise, there was a mom in there with her newborn baby. That was a first for me. I never saw a baby at a spa. On one hand I remember the newborn days where I wanted to get out of the house and perhaps have a minute to myself. So I felt for this mom,  really. But on the other hand, my quiet retreat became filled with crying and the sights and sounds of a baby. I made it in the room about 15 minutes, and then gave up. At that point I felt my head spinning and had to remove myself from the situation. Upon leaving I also realized I wasn't physically feeling well.

I did have lunch with Ann, Tanja, Tina, their children, and Mary (Ann's mom). But at lunch I was dwindling, and I felt feverish. So I headed home to rest. Tonight Peter and I are saw Mary Poppin's, the musical at the Kennedy Center. Charlotte's mom, Ellen, gave me her tickets for the show. Ellen knows I love musicals, and when big shows come to DC, they get sold out quickly. So I am grateful to Ellen for this opportunity. So despite how I am feeling, I pulled it together because I did not want to miss the show.

Peter and I just got back from Mary Poppins. It was a three hour musical, but it went by very quickly. All I can say is I needed this musical tonight. Peter and I were both in a funk, and I can say that if Mary Poppins can't breathe life into you, I don't know what could. Disney outdid themselves. This is the first musical in a long time that captured my heart and spirit. Musicals today are filled with sound effects and a lot of noise. Mary Poppins is a return to the way I remember theatre being when I was growing up. There was a traditional story, with a plot, and a MORAL message (in which children are important, and they grow quickly, if you don't spend time with them now, then soon they will be old enough to leave home and there will be only missed opportunities), and most of all there was glorious music, sung by people who knew how to perform. I must admit I grew up with Julie Andrews as my model for Mary Poppins, so I went in with very high standards tonight. But the Welch born actress who played Mary Poppins was simply brilliant. You just had to love her. The supporting cast was extremely talented and I think this is a musical that appeals to all ages. I laughed, cried, cheered, and by the end when the cast got a standing ovation, I too wanted to dance to Supercalifragilisticexpialidocious! The true test is I left the theatre singing. I rarely sing now. Mattie's death has removed the spark of fun I used to have in my life. But there was something magical about Mary Poppins. The sets were clever. In fact part of the set looked like an old fashioned doll house that you can open up doors to. It is easy to produce Mary Poppins' magic in the movies, but how they captured the beauty of drawers opening and closing on their own, and how a kitchen set magically reset itself was special. However, we actually saw the character of Bert tonight dance upside down on the ceiling. I did not think anyone other than Fred Astaire could accomplish this feat! This production left me energized which isn't easy since I am running a fever and have a wild sore throat. I have attached a link to the Broadway version of Supercalifragilisticexpialidocious. The hand gestures are priceless! I also loved Disney's slant, in which despite the era of the musical, there were very empowering statements about women, which leads to an equally empowering song, "Anything can happen." I don't rave about musicals often, but if you have the time, it is definitely worth taking your family to see this!

http://www.youtube.com/watch?v=qkHV6THFoDs


I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "As we've blogged about this before, children are much more open about death than adults. They are more realistic and less guarded and they are more able to acknowledge the missing person in their lives. Children know that loss hurts and it is not made better by not talking about it. Adults seem to think we can all hide behind small talk and that the loss of someone dear will somehow be "forgotten." It is instead (as the poem says) the elephant in the room. And the longer you go without speaking the name or saying what you are feeling, the larger the elephant gets until all the space is taken and the conversation withers away. Just as children do, it is better to speak what you feel and go on to acknowledge the person where they would naturally do so as Abigail did a week ago when she said Mattie would have enjoyed the camp. I do think that we get "messages" from those who love us if we are open to them; thank you for sharing that lovely picture of the butterfly that chose to spend time with you. I am glad to hear that you and Peter had a good evening with Jerry and Nancy and that they were able to help Peter express his feelings and bring a little humor to the evening. Humor is one of the gifts that helps us all get through the worst of times. As I practice today, I will send you my energy to help you continue to find some solace in nature and more subjects for your lovely photos. I hold you gently in my thoughts."

The second message is from my colleague, Martha. Martha captured the feelings I have when others try to rush Peter and I through grieving. I am more forgiving of friends in our lives, however, what may surprise you is that not all health care professionals are trained in grief, and therefore have no understanding of the pains that some of their patients have who walk through their doors. Some days, I have the energy to advocate and educate these folks, and other days, I just let it go. But I agree with Martha, labelling one's reactions to grief is counterproductive. Because if you label "good" or "bad" grief, in a way that implies that grief follows a set process, and that in a way "healthy" grieving looks a particular way. Grieving is a very personal matter, no two people deal with it the same way, nor do they need the same things to survive the process. Therefore, trying to classify who is doing it "well" or who is reacting to it in a more complicated way in my mind is over simplifying the complexities of grief work. Martha wrote, "I really resonate with your being upset when people label your grieving process. Long after my husband died in the car accident, I was experiencing trauma on the anniversary of his death. I learned that the "Grief Specialists" had begun calling this "Complicated Grief." They evidently felt a person was somehow abnormal if they grieved too long! I resented this term and this feeling, especially from the professionals who had set themselves up as the experts. No one can understand the personal limits of another person's sorrow, nor can they put limits nor dimensions to it. You are right to be angry when someone trys to do this to you. Those who try are the ones with the problem -- not you or I."

Wednesday, July 7, 2010

Wednesday, July 7, 2010

As I was searching for a picture to post tonight, I came across an electronic file I hadn't opened in a long time. The beauty of electronic files, or at least with me, is I some times create a file and then forget about it. This picture was clearly in such a file. I remember this chickie onesie of Mattie's very well. In fact, with each stage that Mattie grew out of clothes, I always saved a favorite outfit or two from each stage. I suppose I wanted to capture that moment in time. I did not realize then that I wasn't only capturing a moment in time, but I was capturing the only tangible things of Mattie's I would ever have. Mattie and I were very fond of ducks, and I guess I started his love he had for animals at a young age. This chickie outfit was just one of many other animal themed outfits he wore.

Poem of the day: Forty two by Charlie Brown

Forty two weeks
Or forty two years
It will not matter
There will always be tears
You were our hope
Our son and our joy
Now you are gone
You're God's little boy
People ask how I am
And what I'm doing
I am helping others
Not sitting and stewing
But whatever I do
Or wherever I go
Your memories accompany me
For this I do know
For as long as I live
You will hold my heart
And I felt it break
That day we did part.
But I will keep on
I have to, you know
And in doing so, honor you
I've a long way to go.

Charlie's poem is very moving. It is moving because it expresses how a loss of a child is felt by parents. It is a pain that doesn't go away, whether Mattie has been gone 42 weeks or 42 years. It is a part of us. However, the struggle we continue to face is that this is our reality moving forward, and as Charlie states, "I've a long way to go." It is very difficult to continue this journey when the hopes you had for the future have been eliminated. Therefore, in a way it takes super human strength to pull out of the depths of despair some days.

I had an amazing sighting today at Ann's house. A beautiful monarch butterfly came right up to my car. Unlike typical butterflies, this one spent a great deal of time with me. It circled a tree, and allowed us to get close to it. Just when I thought it would fly away, back it came. So I pulled out my camera to share this beautiful creature with you tonight. Once Mattie came into my life, I learned to always travel with a camera in my purse. However, now, I do not have as many moments to snap pictures of. Somehow it seems like I have moved from taking pictures of my little one (and things associated with children), to taking pictures of nature in a desperate attempt to capture the spirit of Mattie. If only this butterfly could talk and let me know how Mattie is, not that it would change my current feelings, but Peter and I live with the memories of cancer treatments and surgeries and we also live with the memories of watching Mattie die traumatically.

This afternoon, we headed back to Tina's (Ann's friend and neighbor) pool. It was another 100 degree day today, and the relief from the heat was much appreciated, by adults, kids, and even, Max the dog! Later in the afternoon, I went with Ann to pick up her daughter at camp. While on line to pick up Abigail, I saw one of Mattie's former classmates. She saw me. She could have turned away, however, instead she waved and smiled at me. I am not sure what about that interchanged touched me, but it did. I find that children and adults deal with Mattie's loss very differently. Adults are sometimes scared to bring up Mattie in front of me, or to dialogue about my loss. However, I have experienced quite the opposite from children who knew Mattie. I would think Mattie's death would be difficult for his friends to accept, and on some level I am sure it is. It brings about concerns about their own health and the health of those around them. But what amazes me is that I hear from parents that these children also worry about me. They are concerned how I am going to live without Mattie in my life. To me, this is a very sensitive and telling observation, one in which adults may have, but would never verbalize. The beauty of young children is that they have the ability to express most thoughts and feelings without censoring them. Anycase, the wave and smile from Mattie's classmate, stopped me in my tracks today. Because it is in these beautiful and unexpected moments that I think of Mattie and exactly what is missing in my life.

This evening Peter and I went out to dinner with Jerry and Nancy (the volunteer musical duo at Georgetown University Hospital that Mattie loved). Before we headed out to dinner, I could tell that Peter was quite down, upset, and not happy with what life has given us. It is ironic, Jerry and Nancy work at the Hospital to cheer up the children who are sick. However, what I learned back in August 2008 (when I met them), is their presence had a big impact on Peter and I. They brought music, laughter, and friendship into our room each week. They helped pull Mattie out of his shell, and they were successful most nights, since Mattie loved playing "Name that Tune" with Jerry and Nancy. Jerry and Nancy helped us forget about chemotherapy and cancer, and instead got us singing and some times even got Mattie moving his body. We even got the nurses involved in our shows! Though Mattie is gone from our lives, the friendship he helped us build with Jerry and Nancy is alive and well. Jerry and Nancy worked hard tonight at getting us talking, processing things, remembering Mattie, and also laughing. Through dinner, I could slowly see Peter's spark come back just a bit, and I realized what Jerry was doing was giving Peter and chance to express his thoughts and feelings in a very energetic and stimulating manner. Jerry is a syndicated columnist and he was talking with us tonight about me writing a book. Jerry gave me some things to think about and how to start brainstorming this enormous task. The one thing that I have as a resource is the BLOG. This is a written account of our days for the past two years. I do not have to imagine how I felt on any particular day, I just need to go back to the blog and read about it. Jerry happens to love my sense of humor and he feels if anyone can tell Mattie's story and help others through writing, it will be me. I appreciated this level of confidence in me. As I told Nancy, part of my issue is trying to deal with Mattie's loss and while doing this, it is hard to go back and read the blog. Part of this blog in ingrained in me, I have lived it and breathed it, but I am just not sure I am ready to relive it right now. Needless to say, we had a good time reconnecting with Jerry and Nancy, and we were not short on conversation!
  
I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend. Remember Kristen had a baby in May! Kristen wrote, "As the days go by and I continue to find myself sleep-deprived... I often think of the two of you and what you had to accomplish daily while Mattie was sick. How with even less sleep and infinitely more stress you were able to keep track of Mattie's medications, care for him, advocate for him, maintain your blog, ask intelligent and thoughtful questions, read and understand the osteosarcoma literature, work a full time job, interact with staff, thank your supporters, and function on a day-to-day basis is nothing short of amazing. Then and now, you continue to be inspirational. Thinking of you this Tuesday and everyday."

The second message is from my friend, Charlie. Charlie wrote, "I appreciate the sentiments in Nancy's poem. As she said, you did give your all and you continue to give even now. I think that is what some people don't understand; they try to put themselves in your place and many of them would try to run from what you are facing by being as far away from cancer and families as they could. I admire you and Peter for what you are doing to help others; I hope that in the long run it helps to bring a sense of healing to your hearts. I read what you said about the daily stressors and I believe that's where your blog has made the biggest difference for most of us who are not dealing with life and death issues right now. I know many of us have been reminded to let things go; not to overreact to the small things like spilled milk or traffic jams. So many small things happen daily that we can easily lose sight of the blessings of our day and our life. As I practice today, I will send you my energy to help you "keep on". I hold you gently in my thoughts."

July 6, 2010

Tuesday, July 6, 2010

Tuesday, July 6, 2010 -- Mattie died 42 weeks ago today.

Tonight's picture was taken in May of 2003, at my graduation party. Mattie was a year old. Pictured with Mattie and I is Carol. Carol was my dissertation chair and advisor. I can assure you if Carol allows you to graduate you have earned your stripes. As she always would tell me... "Vicki NOT all dissertations are created equal." Meaning that it took me longer to get my degree because I stuck to my principles and captured meaningful data about caregivers of older adult family members, but in Carol's mind my work was worth the wait. I reflect on that comment now. At that point in my life, completing my doctorate was probably the hardest, most humbling, and challenging experience I ever had! Little did I know that was only good preparation for doing battle in a hospital for over 15 months, and advocating for my most precious asset! Though Mattie did not get the concept of my graduation, he definitely understood the concept of a party, as you can see with his big sweet smile!

Poem of the day: MATTIE by Nancy Heller Moskowitz


It's Tuesday, another week has passed.
I miss you, our child, our son.
Your place on earth gone,
Your fears, your hopes, your wondering,
How life would ever be!
I miss you, our child, our son.
Each day, a picture etched within my soul
Of hopes and dreams,
For you and us,
As Dad and I grow old.
For you, eternity, a final resting place,
For us, work left to honor you.
I miss the warmth of your embrace.
Each morning and each night,
Only to be replaced,
By emptiness and intermittent light.
Others listen and offer their best,
I pray they never are put to the test.
Yet, I am strengthened by the fact,
That we gave our all,
To you, our son,
Our gift, Our life!

As today marks the 42nd week that Mattie is gone from our lives, I reflect on the poem that my friend and colleague Nancy sent to me today. Nancy is very aware of the fact that Tuesdays are challenging days for me, and her poem captures many of the feelings I have now and most likely will always have in my life. With the birth of Mattie came great hopes. Hopes for Mattie's future, and our future together as a family. Now Peter and I are left with only memories and the convictions to help other children like Mattie and their families. As I know others try to listen and understand our pain, it is my greatest hope that none of you will have to experience this first hand, but at the same time step back and appreciate what you do have. I remember the daily stressors, the little things that would set me off in a given day, but Peter and I are living proof that things can get very bad, and when faced with life and death decisions, everything else pales in comparison.

I went to visit my urologist today. After Mattie's death my body was physically depleted and I began to experience various ailments. This urologist has been working with me since October. She is a very competent individual, and I know she takes my case seriously and also to heart. Each time I meet with her, she lands up in tears and sniffling. Mainly because I do not think she knows how she would survive if her children died. Before I met with her today, I had the fortune of chatting with her resident from Georgetown University Hospital. He was young, energetic, and very professional. He could see in my chart that I lost Mattie, and he spoke to me about that. While I was chatting with him, I could also hear the doctor talking to a patient in the next room. The walls are so paper thin. I commented to him on that, and clearly he made a mental note of what I was saying. After he left the room, he then went into the adjacent office to brief the doctor of the information he obtained from me. Like before with the other patient, I could hear their conversation VERY clearly. It is a strange feeling to hear two doctors talking about you, however, the resident must have told the doctor that I can hear everything, and after a few minutes, I couldn't hear anything else. He clearly told her to lower her voice. It isn't only this doctor, I can hear nurses talking to patients in neighboring rooms, so to me it is the physical space. I just shake my head when I visit, because to me it screams......HIPAA compliance issue!

I will spare you the details of the visit, but four things struck me about our conversation today. The doctor always remembers that I wear of piece of Mattie jewelry. Each visit she comments about it. The second thing which interested me is she asked me what I was "doing" now. How I spent my days. Ironically Denise and I just spoke about this word, "doing" yesterday over lunch. In comparison to my former life, pre-cancer, I was a DOER. That defined me, now I sometimes grapple with how to answer that question. However, Denise helped me see yesterday that I am DOING. Grief work is doing, and keeping Mattie's memory alive is doing, keeping the Foundation running is doing, and the list began to grow as Denise and I were talking. So in essence I was able to articulate today what I was "doing" to the doctor. The doctor was simply astonished with all that Peter and I have been through that we want to devote our time to helping families battling cancer. By not just throwing money at a problem, but instead investing our time, energy, and hearts into each project we take on. Her amazement caught me off guard, because to me, it is quite natural that after surviving hell, one would feel compelled to help the next person walking this awful road. The third item we discussed was where Mattie was buried. She asked me if I went to visit his grave site. I told her that I did not have to because his ashes were at home with me. She too is Catholic, and had many questions about the whole cremation process. She wanted to know if Mattie's ashes were in an urn, and I enlightened her that urns are rarely used anymore, since people choose creative ways to store and display a loved one's ashes. The final comment that I reflected on throughout the day was her point that certain doctors should be given training on how to deliver bad and difficult news to family members. I told her that in my opinion this should be mandatory for ALL physicians. I then proceeded to tell her that no matter how devastating information is delivered, it will simply be bad. So I don't think classes need to teach the delivery per se, as classes should address instead the follow up care that should be provided to patients. The beauty of Georgetown in my mind is that yes we received the worst possible news. However, the doctors NEVER turned their backs on us, and helped us through Mattie's death and beyond. Even today, we are very connected to several of Mattie's doctors. When you lose a loved one, the impact of that news isn't just on the day you hear the news, but the impact lasts a lifetime. Not all doctors are willing to commit to this kind of long term relationship. We are fortunate enough to have found a rare breed.

After the doctor's visit, I went to visit with Ann. We had lunch together, and her friend and neighbor, Tina joined us. Since it was incredibly hot today, 105 degrees!!!!, Tina invited us back to her pool. We all had a fun time watching the kids and Tina's dog, Max swimming in the pool. It was a wonderful setting to be surrounded by trees and to be around a very normal summer experience. Children playing, having fun, around a pool. Nothing in my life is normal anymore, so when I have these moments of normalcy I do land up reflecting upon them. I also reflect on the generosity of others in my life. I know people want to help us as we deal with our grief, and I guess I want to say every kind gift, invitation, and message does not go unnoticed.

Peter did go to work today, and he appears to be feeling better. But the recovery from what he and I had has been very slow. I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I hope Peter is feeling better today. The heat makes it even more exhausting when you don't feel well. It sounds like you had a good time at lunch. As you said, sometimes we all need a reality check and it was lovely of Denise to provide one in such a positive way for you. You are a terrific teacher; not everyone is as well liked or respected as you are. Even though the classes for the cohort ended late in the evenings, I remember waiting after class to speak with you and seeing many of my classmates doing so as well. I do hope you can find your way back to teaching as you have so much to give in that arena. Time may put a scab or a scar on a wound but that doesn't mean it is gone, only closed over so that we can resume doing our daily tasks. Words, events, memories can all break that open in a moment and cause you to be "elsewhere" or overcome by emotion. As time passes those moments may become shorter or less frequent but they will likely happen for the rest of your life. Losing someone you love, particularly a child, impacts your life forever. Mattie will always be a part of who you are and that's a good thing. I hold you gently in my thoughts."

July 5, 2010

Monday, July 5, 2010

Monday, July 5, 2010

Tonight's picture was taken around July 4th of 2003. That was Mattie's first trip to the Outer Banks, NC. He was NOT a happy camper by the water or on the beach that year. So we spent a lot of time admiring the sights and sounds of the Atlantic Ocean from the deck of a house we rented. It is funny how cancer puts things into perspective quickly. Back then, when Mattie was one year old, my biggest problems were Mattie wasn't walking or talking yet. Those seemed like legitimate problems at the time. As I began to grow as a parent with Mattie, I learned that Mattie had his own time frame to do things, and he wasn't going to do anything unless he was ready. In many ways, once I learned that key to parenting Mattie, I began to realize that developmental bench marks are just that.... they are a guide, but not something that every child follows to the T. We sure had many ups and downs with Mattie prior to his cancer diagnosis, but one thing is for certain, it was through Mattie that Peter and I learned more about ourselves and life than we could ever have achieved through reading, education, and hearing stories from others.

Poem of the day: The Visit by Charlie Brown


You were here just yesterday
And oh, how much I wished you'd stay
Your visit, it was much too brief
And of my missing you, brought little relief
I saw your spirit in a butterfly
You came out of the empty sky
You visited each of your favorite things
And then you were gone on gossamer wings
I spoke to you when you were here
And told you of my greatest fear
That somehow I would lose your memory
And that Mattie's mom I would no longer be
You showed me with your presence yesterday
That you've never really gone away
And that you'll come back and visit me
Mattie, your mom, I will always be.

I want to thank many of you who wrote to me today to let me know how much you enjoyed seeing Mattie's flag flying on the blog yesterday. Mattie's flag continues to fly today as well, and hopefully through the summer.

Peter had a rough night of sleep and woke up feeling sick as well. So he was out of commission today. While he was resting, I went out to lunch with my friend and colleague, Denise, and her daughter, Marisa. Marisa babysat Mattie in the summer of 2009, before he died. She helped me on numerous occasions when I needed a break from being home and was drowning in the overwhelming care and emotions of Mattie's cancer. Babysitting a healthy 7 year old can be a challenge, but Marisa was confronted with a 7 year old dying from cancer. That is NOT an easy role to walk into. Watching Mattie meant really playing and entertaining him, but it also meant watching his EVERY move so he wouldn't hurt himself, and monitoring his symptoms and pain. The fact that Marisa did not shy away from working with us, says something about her character. I feel this way about all the young people who were willing to play with Mattie and who wanted to offer us a break. That kindness is a rare gift, and I must imagine that Mattie has influenced their lives somehow whether personally or career wise. Those of you who attended the Mattie Miracle Cancer Foundation Pediatric Cancer Walk, know Marisa. She coordinated the bake sales at both the 2009 and 2010 Walk.

I really hadn't been out of our home since Friday, so it was nice to get out and moving today. My energy level continues to improve which is a wonderful feeling, because on Saturday I truly thought I was very sick. I felt like I was in an absolute fog and listless. I chatted with Denise and Marisa about all sorts of things today. Denise and Marisa are very sensitive and non-judgmental. We talked about one of my favorite lines, "time heals all wounds." We talked about expectations and the expectations other people sometimes have for my healing process. The problem with that of course is there is NO real guideline for healing after the death of a child. There can't be a guideline, because grief and loss is very personal and is handled differently by each person. So therefore the expectations of others is really irrelevant for me. I have learned not to have expectations for my healing process, I instead take it one day at a time. It was a philosophy I adopted through Mattie's cancer, and sometimes that is the best one can do.

Denise did give me a reality check. I am sometimes not a good judge of my own accomplishments, and Denise wanted to let me know that she thought Peter and I are doing a fabulous job with the Foundation. We have achieved so much with it so far, and we have only lost Mattie 10 months ago. Denise was also reminiscing about the times she would come and guest lecture in my classes. She was telling Marisa that no matter what course I was teaching, students surrounded me to talk with me before and after class. I suppose I forgot those moments, or maybe I assumed that this happens to all professors. But as Denise aptly pointed out to me, that students surrounded me because of me, not because of my position. Either case, hearing Denise reflecting on the impact I may have made in my students' lives made me feel happy.

Toward the end of our lunch, Denise asked me if I was okay. I asked her why, because I did not feel visibly upset. Denise then focused on the baby who was sitting right next to us. The baby was fussing and crying, and Denise was correct. Typically this sight would have bothered me. In fact seeing pregnant women really bother me. To me seeing someone pregnant is a symbol to me of the joy I no longer have in my life. It also is a reminder to me that people have healthy children every day, but I wasn't as lucky. However, seeing the baby today did not bother me. I am not sure why. Maybe because I was too engrossed in conversation to really focus upon my surroundings. 

After lunch I ran some chores and then came home to check on Peter. I made a dinner I thought his stomach could tolerate, and the poor guy, I had him eating outside tonight on the deck. Mind you it is 100 degrees in the shade in Washington, DC. Peter was a trooper, but neither one of us made it outside very long.

I would like to end tonight's posting with two messages. The first message is from my mom. My mom wrote, "I saw the picture of the flag flying from your balcony on the blog and it is awesome sight. It makes a statement about the outsized passion for living that Mattie brought to every project he undertook. What a wonderful contribution his big, beautiful flag made to the vista of the viewers who parked on the ramp across from your complex who were there to see the spectacular fireworks of the DC July 4th celebration. Even though Mattie was not physically present, his flag was there in his place and by flying his flag from the balcony, his actions of last year may have inspired others to fly flags of their own to commemorate the birth of our nation in future years. Here is another instance of Mattie's influence on the behavior of others through an action he initiated when he was alive. It is remarkable how Mattie touched many hearts and influenced many minds directly and indirectly in the short time he was with us! Incredibly, so many of them, he did not even know!"

The second one is from my friend, Charlie. Charlie wrote, "I am sorry that this holiday weekend continues to be physically difficult for you and Peter. I am not surprised by Mattie's choice of the largest flag he saw; he always seemed to do things in a big way once he'd made up his mind about what he wanted. I am sure he appreciated seeing that flag and I am sure it meant a lot to Peter to set it up and fly it from your balcony. I watched the fireworks last night and thought about Mattie and both of you and I am sure that many of Mattie's and your friends and family did as well. As Nancy so nicely stated, it is fortunate that you and Peter have each other for support and understanding; while it doesn't lessen the pain or speed the healing, it does strengthen the spirit and make the path a little easier to bear. I hold you gently in my thoughts."

July 4, 2010

Happy Fourth of July

Sunday, July 4, 2010

Tonight's picture was taken on July 4, 2009. This was Mattie's last Fourth of July. We joined Ann and her family that weekend at a local resort. As you can see Mattie was pictured with Abigail on the left and Jackson (a friend of Abigail's) on the right. That was a tough weekend for Mattie. Part of him wanted to play with the other children and the other part of him was very depressed and therefore preferred staying in the hotel  room. I certainly understood his internal conflicts and we supported him through whatever he wanted to do that weekend. However, you should know that Jackson is a huge Lego fan, so Mattie and Jackson bonded quite well over building and designing. Because Mattie was into Sponge Bob at that time, Mattie and Jackson were building all sorts of Sponge Bob creations. 

Poem of the day: July by Charlie Brown


July once meant
All good things
And the special joys
Only summer can bring
But now I'm saddened
And full of despair
Watching the fireworks
Without you there
When those starbursts
Light up the night sky
I will be watching
Trying hard not to cry
Because while this month
Contains my joy
It also means the loss
Of my Mattie, my boy
Our wedding anniversary
And my birthday too
Are all overridden by
The loss of you
In this first year
Of overwhelming pain
I am doing my best
To just remain sane
So my friends
Can you be patient I ask
As I deal with my grief
A monumental task
So on this July fourth
When the fireworks are done
I'll have spent the night
With memories of my son

In honor of the Fourth of July, which is a very special day for our Country, I would like to share some facts about Independence Day with you as well as some pictures we took today. We hope you enjoy them and that all our readers had a good holiday!

Independence Day honors the birthday of the United States of America and the adoption of the Declaration of Independence on July 4, 1776. It's a day of picnics and patriotic parades, a night of concerts and fireworks, and a reason to fly the American flag. During the American Revolution, the legal separation of the Thirteen Colonies from Great Britain occurred on July 2, 1776, when the Second Continental Congress voted to approve a resolution of independence that had been proposed in June by Richard Henry Lee of Virginia. After voting for independence, Congress turned its attention to the Declaration of Independence, a statement explaining this decision, which had been prepared by a Committee of Five, with Thomas Jefferson as its principal author. Congress debated and revised the Declaration, finally approving it on July 4. A day earlier, John Adams had written to his wife Abigail:


The second day of July, 1776, will be the most memorable epoch in the history of America. I am apt to believe that it will be celebrated by succeeding generations as the great anniversary festival. It ought to be commemorated as the day of deliverance, by solemn acts of devotion to God Almighty. It ought to be solemnized with pomp and parade, with shows, games, sports, guns, bells, bonfires, and illuminations, from one end of this continent to the other, from this time forward forever more.

Adams's prediction was off by two days. From the outset, Americans celebrated independence on July 4, the date shown on the much-publicized Declaration of Independence, rather than on July 2, the date the resolution of independence was approved in a closed session of Congress. Historians have long disputed whether Congress actually signed the Declaration of Independence on July 4, even though Thomas Jefferson, John Adams, and Benjamin Franklin all later wrote that they had signed it on that day. Most historians have concluded that the Declaration was signed nearly a month after its adoption, on August 2, 1776, and not on July 4 as is commonly believed. In a remarkable coincidence, both John Adams and Thomas Jefferson, the only signers of the Declaration of Independence to later serve as President of the United States, died on the same day: July 4, 1826, which was the 50th anniversary of the Declaration.

 
When I woke up this morning and opened our window blinds, the first thing that I saw was a HUGE American flag flying outside our window. I was disoriented at first and thought it was our neighbors who were displaying a flag. But as I began to focus on it, I realized it was attached to our balcony. I knew immediately that Peter was up and that this was the product of his handy work. However, this flag has a story! This doesn't surprise you, does it?
 
Right before Mattie died, he and Peter went to Home Depot together. From Mattie's wheelchair, he pointed to this HUGE American flag. He wanted Peter to buy it and display it outside. At that point in time, whatever Mattie wanted, we were trying to accommodate his requests. Well this HUGE flag made it to our home but we never put it up. There just wasn't any time. Today was the first day I saw this flag unfolded and actually flying. I quickly realized that Peter displayed this flag in honor of Mattie. You have to understand just how big this flag is, it is most likely my height so it is a good five feet tall. Mattie never did anything small, and this flag is our reminder. Mattie in essence was celebrating July fourth with us today. You can see three flag pictures below!


 






























I asked Peter to take a picture of the first car to set up shop right on the on ramp of Route 66. These folks parked on the on ramp and set up lawn chairs to prepare for the firework show. That may sound cute and a good idea, but you should know that this was a functioning on ramp, and there were cars flying by these people. This whole scene made me nervous, because they could have been hit by a car. However, by the time the night progressed, there had to be about 30 other cars parked on the on ramp right along side these folks!
The next six pictures were taken tonight during the Capitol Fourth Fireworks show. Peter did a very good job capturing the beauty of the display.

The one great thing about city life is evident on July 4th! We just walk outside our complex, and we can see an amazing fireworks display. We were surrounded by a ton of people, people of ALL ages.
During the fireworks, a little boy behind me started singing, Twinkle Twinkle Little Star. He was very proud of himself and thought it was a great song to sing, considering what was sparkling in the air! The song was darling and also reminiscent of my days with Mattie. This was one of Mattie's bedtime songs that we always would sing together.

It is hard to see the true beauty of this color. But this beautiful lavendar color was featured this year in the displays. It was simply breathtaking, and my favorite part of the show.
















This was Peter's favorite part!













As the 20 minute spectacular show was coming to an end, the colors and the non-stop displays were overwhelming. To me they were the best I have seen in DC, and I have seen many July fourths in the District. It was hard to believe that people could time such beautiful displays and colors together. I am not sure what I was taken aback by more, the fireworks, or the fact that there were tons of people all around us. None of them were moving. Every camera was out and taking pictures. Traffic in the street STOPPED moving, people were smiling, and appeared united and appreciative. It was just a special moment, and these special moments always bring tears to my eyes.

Though July 4th is a festive day, I think it is very appropriate to include this song in remembrance of the day. We have our freedoms thanks to the dedicated men and women in our United States military. I have no doubt that no matter what city you are in, you most likely heard Lee Greenwood's song today.

"God Bless the USA" is an American patriotic country song written by country musician Lee Greenwood.  It reached number 7 on the country charts when originally released in April 1984, and was played at the 1984 Republican National Convention with President Ronald Reagan and first lady Nancy Reagan in attendance, but the song gained greater prominence during the Gulf War in 1990 and 1991, as a way of boosting morale. The popularity of the song rose sharply since the September 11, 2001 attacks and during the 2003 invasion of Iraq, and the song was re-released as a single, re-entering the country music charts at #16.
http://www.youtube.com/watch?v=RINqibpWOzQ&feature=related


This has been a hard weekend for Peter and I. I am slowly regaining my strength but unfortunately Peter is feeling ill again. I spent a great deal of time outside gardening. It was a hot day, but I wasn't in the sun, and just enjoyed the fresh air. While gardening I was stunned by my sighting. A beautiful monarch butterfly flew right into our deck space. I can't recall when I saw a monarch last in the city. It is a rare occurrence. The butterfly flew right near me, circling, and then visiting Mattie's wind chimes, Speedy Red, and the fountains. I swear today I was visited by Mattie in butterfly form. In fact, I started to talk to the butterfly. But like all delicate and precious things, its visit was short lived. However, this visit carried me through the day.

I would like to end tonight's posting with two messages. The first message if from my friend, Charlie. Charlie wrote, "I know that today will be tough for you. Like most small boys, Mattie delighted in the sights and sounds of the fourth of July and that the celebrations and fireworks will go on without him here to appreciate them is so hard. I am sure his friends will be watching and thinking of him on this day. Although Mattie left much too soon, I am sure you would not have wanted the seven years of love that you shared with him not to have happened. Those special dates in July (your birthday and wedding anniversary) made that little boy's presence in your life possible and so for that reason, as well as for others, I hope that you can find a way to celebrate those days in your life. As I practice today I will send you my energy to help you through. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "As I read the blog for the last few days, I kept seeing Peter and you being together. I am glad that you have each other to comfort and understand the emotions of your loss. As you know, many are not so fortunate. They don't have that someone where their deepest feelings are understood or accepted. It doesn't make the pain go away any faster, it just helps to give it a place to vent. I, too, remember Little House on the Prairie. It talked of life's twists and turns and offered a sense of hope even though struggles abound. As I remember the show, it created a way to see life outside of our own experience. I remember when I felt 'stopped up' and knew I needed to cry or just feel any emotion, my friend and therapist would suggest watching a show that would evoke the feeling. It was very cleansing and cathartic. Right now, this show appears to be your access to deeply felt emotions. Yesterday's poem was so powerful, I actually had a difficult time reading it. I realized it was because of the depth of it's message. It reflected on a short life which was remembered long after its end. Mattie has brought so many people together, in life and death. He and you have created an environment where others can feel connection and understanding, especially, times where clarity of thought is difficult. I am glad that you are beginning to heal from your flu. Please be gentle with yourself over the next few days as you gain strength. Tanja's sharing was beautiful and no wonder you cried. I know it may feel strange to burst into tears in public places, yet, this was a safe place and you were able to feel your feelings. Like the poem of the day before, you do open your jar and that is an important step. I used to wonder why people kept their 'jars' closed. I understand now that was their way of coping. Before I held judgment, now I hope it is understanding."