Saturday, May 15, 2010

Saturday, May 15, 2010

Tonight's picture was taken last May at the March for a Mattie Miracle. I was going through my electronic files and I found this picture tonight. It captures Mattie smiling and sitting between his two very close kindergarten buddies, Charlotte and Campbell. Take note of the cup, filled with caterpillars that he is holding! Nature was a big part of Mattie's life, and I am so happy on that event weekend, when he was out of the hospital, that he had the chance to reconnect with nature and his friends.

Poem of the day: What Is Grief? by Michele Young

What Is Grief?
Who really knows?
How to do it—and—how it goes
Grief I’m told is letting go
Be it right or be it wrong
Words and feelings to our own song.
Memories flood the tears in our eyes
Do you think our loved one hears our cries?
And how the heart aches to no end
Even knowing that our loved ones’ peace will send.
To feel so lonely and filled with fear
I wonder if the Lord does truly hear?
So our days go by hour by hour
As we smile and carry on with all our power
We stay busy, sometimes too busy to see
And notice in God, we truly need thee.
Our nights are filled with restless sleep
Even knowing you’re in God’s keep
We wake from slumber in the early morning light
To weep our loved one, now, out of sight
We toss and turn and try to pray
Please Lord help us through another day!
And on the day where silence was once cherished
This too, has somehow perished.
Alone we fight the pain, the loss, the sorrow
While waiting for a bright tomorrow
We try to understand words that feel so cold
We try to forgive, we try to be bold
We smile that smile
We walk that walk
We love unconditionally as we feel the pain of their talk.
We do desperately grieve inside
And try to live as God abides
For our pain and sorrow runs so deep
So deep that no one can see us weep.
So grief they say, as they point their finger
Get over it, it’s done, don’t let it linger
But “we” know it doesn’t matter how many days go by
Our hearts will always know how to cry.
So tell me, what is grief and who really knows
How to do it and how it goes?

This poem captures the issues with grief. Grief is like many human emotions. It is hard to quantify, standardize, and to understand. I have found that even though Peter and I are dealing with the same loss, our grief responses are different. What sets off my tears may be quite different for Peter. In fact, I think this is why grieving the loss of a child can be so painful for a married couple. It is true under the best of circumstances, marriage requires work, patience, giving, flexibility, and compromise. Now add the worst of circumstances, a child dying, and it can wreck havoc on the individual and on the relationship as a whole. 

Peter and I spent a great deal of time working on Walk related items today. However, by lunch time, Peter encouraged me to get out of my pajamas, and to take a walk by the Potomac River. At first, I couldn't foresee how I could actually do that and accomplish all that I needed to do, but I did stop, and decided to get some fresh air. The diversion was very needed. I wasn't a very good conversationalist, but Peter is quite used to my ups and downs in general, and certainly more so since Mattie's death. I started the day off very snappy, and I asked Peter if he ever felt agitated and upset for no particular reason. Peter said that he did all the time now, and understood.

Later in the day, Peter shared with me something he has been brainstorming. In fact, he told me it came to him while he was driving and doing chores today. Peter is in the process of creating a video that makes an impact and causes you to think about pediatric cancer. He played a portion of it for me today. He used a song from U2, which apparently he and Mattie would listen to on saturday mornings while they would run chores. Between Peter and I, Mattie got exposed to all sorts of music! Anycase, as Peter played me the first 40 seconds of the video, I began crying. It made me reflect on what it felt like to have Mattie diagnosed with cancer. Typically it takes a lot for me to cry, but there was something about the sound of the music and the words flashing before my eyes that got me.

I have been chatting back and forth tonight with Carolyn, our friend and the chair of the Walk's raffle. She was telling me about her day. Unlike her typical days, today was a bit more quiet, and she actually had some peaceful moments. She mentioned that at first this slower pace caught her off guard and she was unsure what to do with this time and freedom. I know we can all relate to that feeling. Our lives are busy and packed with tasks and things to do, and when we have the moment to slow down, it is almost uncomfortable and unnatural. It was in my dialogue with Carolyn, that I realized this feeling describes my daily life. I went from a person who worked, was a full time mom, and balanced many volunteer activities, to a person without most of these roles. Without Mattie in my life, a good portion of my energy and direction in life was been erased away. I told Carolyn the feeling she had today perfectly describes my daily existence.

I want to thank so many of you for registering for the Walk. As of tomorrow, we are one week away from the event. We look forward to seeing you there! I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am exhausted, reading about what you accomplished yesterday. I think I would have quit after the board meeting. Sometimes your ability to just keep going astonishes me; no wonder you felt like you were in a marathon. I think the laundry was one of the first successful steps you've made in dealing with some of Mattie's things. Just take it one day and one job at a time and know it is okay to cry or feel whatever comes up when you do. I am glad you can find things and people who can make you laugh; what a blessing Carolyn is both for her ability and her efforts to help with the walk. What a lovely email to get from Sara and how very true that Mattie learned so much of his people skills from you. As you go through today, try not to overdo it and to find a time to rest and recover. I hold you gently in my thoughts."

Friday, May 14, 2010

Friday, May 14, 2010

This picture was taken of Mattie while in his PICU room at the Georgetown University Hospital. Despite the fact that Mattie was missing his hair, and on chemotherapy, there is something very charming and innocent about this picture. As you can see, Mattie put together a three dimensional model of a dinosaur. However, what you can't see, was that before he had the puzzle pieces on the table, he had to dig them out of clay. He was on the floor of the hospital room, with goggles on, digging away. This could occupy him for hours. The room looked like an excavation site by the time he was through, but Mattie's nurses and doctors got very used to his level of activity. The irony is I recall when other children were in the PICU receiving chemotherapy, they were usually sedentary, watching TV, or resting. Mattie rarely did any of these things. Even chemotherapy and surgery couldn't keep him down, which is why I honestly thought he had a chance of surviving osteosarcoma. I couldn't picture a child so full of life and energy being consumed by cancer. I suppose I experienced one of life's worst reality checks.


Poem of the day: Hope & Healing by Sherry Nixon


H ope and healing for a brighter tomorrow
O vercoming pain and conquering sorrow
P raying to our Father for comfort and peace
E ducating one another, that our fears might cease

A ssurance that you will never walk alone
N eeds being met, as close as the phone
D eveloping an alliance for battles to come

H umbly giving our best to honor the Son
E mbracing the precious gift of each day anew
A ppreciating blessings we were once blind to
L iving for the moment, loving all we can
I magining our role in God's perfect plan
N ever underestimating the power of the soul
G iving it to God, for He is in control.


I started my day by attending a five hour licensure board meeting. I have been away from the board for over a year, and lots of things have changed while I was gone caring for Mattie. Board members have changed and new regulations are in the process of being put into place and implemented. Nonetheless, despite my absence, some things are the same. The dynamic between myself and the board staff is the same, and they really are a hard working, yet humorous group of people. Which is thankful, because we have long meetings, and the content of what we have to cover some times is challenging and difficult.

After the meeting, I jumped around from one thing to another. In fact, at times I feel like I am in a marathon, without the running. The pace feels like a test of endurance. I went home and continued working on Walk related issues, and then jumped out and bought things we need for the Walk.

Later on in the day, I decided to tackle laundry. One of the areas of focus was Mattie's bed. I have all sorts of things stacked on Mattie's bed, along with some of Mattie's coats and jackets. Over the months, Patches (our cat) has made a very cozy home for herself on top of Mattie's things. In fact, some of Mattie's coats are simply covered in fur. So today, I cleaned all of his items, and stacked them somewhere else. I pulled off all of his linen and decided to wash them. While in the process of doing this, I was fine, but when I had to pull Mattie's things out of the dryer and fold them the reality of the loss simply hit me. Not that I don't feel this reality throughout the day, I do. But there are times when this reality is overwhelming, when I think I can't go on in this state, and when I just can't imagine that other people have children in their lives, and yet I lost the only child I had.

I have been reflecting on the pictures of Mattie that my mom sent me yesterday. I posted these pictures last night. I am not sure why I find these pictures so moving, but they have haunted me all day. The image of Mattie and his cute face seem to flash before my eyes. When they do, I honestly can't seem to logically accept that such a healthy child could die. How does that happen?!

I began my morning however, by reading a beautiful e-mail from Sara. Sara was Zachary's nanny, while he was in preschool. Naturally since Mattie and Zachary were inseparable, Sara and I got to spend a great deal of time together. Anyone who knew me while I was raising Mattie was quite aware of he fact that I did not leave Mattie with just any one. They had to meet my criteria. Watching Sara with Zachary each day allowed me to see her level of patience, her ability to reason through difficult situations, and her ability to love and nurture, yet toe the line when needed. Therefore, over time, I felt very comfortable leaving Mattie with Sara on many occasions. Like the fact that Mattie and Zachary's friendship grew over time, so did my friendship with Sara. It had two years to be cultivated. Sara and I played with the kids, took them to different activities, chatted with each other, and shared moments in or lives together. It is ironic that I never really reflected upon that gift, until I read Sara's e-mail this morning. I posted it below, but it meant a great deal to me, and not only made me smile, but also made me cry.

In the midst of great sadness today, I can honestly say that my evening e-mails with Carolyn (a RCC mom and our Raffle Coordinator at the Walk) continue to bring me great laughter. I told Carolyn that through working together on the Walk, we have learned more about each other and I really value this connection. Mattie and I used to be silly with each other, and laugh, and in essence Carolyn is nurturing that side of me that also died on September 8, 2009.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I really enjoyed both the picture of the Mattie supercape and the story and pictures your Mom sent. How wonderful to get the gift of an unknown story of your son at this point. In the blog you said it was a busy and productive day but that you felt kind of numb; that's normal, we have only so much emotional energy available and you used yours to work and plan events for the walk. It sounds like things are coming along really well and I know everyone is looking forward to seeing the results of the hard work of you and your team. As you continue to work on the plans for the walk, keep in mind the need for balance and try to take time this weekend to do some self care. I hold you gently in my thoughts."
 
The second message is from Zachary's nanny, and my friend, Sara. Sara wrote, "I've seen that in your blog lately you've mentioned Zachary and Mattie. And, I often think of our times together and also wonder how Zachary is doing without his buddy. The last time I talked to Zachary, he very much wanted to make sure I knew about Mattie and wondered if I knew how you were doing. I need to call him again. It has been a little while. And I do miss him. I miss our lovely play dates... the boys having such fun. It was so special... that time. I can't even begin to imagine how much you must miss Mattie... and that you could still visit with Zachary and talk with him and wonder how he feels too, is.... just another special piece of their wonderful friendship. And another example of where Mattie picked up some of his personality from his mom. You are very thoughtful Vicki, and Peter is so blessed to have you as his wife and friend.... and Mattie to have had you as his mom. Love you much and think of you daily."

Thursday, May 13, 2010

Thursday, May 13, 2010

Last year, right before the March for a Mattie Miracle, Mattie's art therapists, Jenny and Jessie, created a special cape for Mattie to wear at the March. It was a super hero cape, saying, "Super Mattie." The picture of Mattie they selected, features him wearing his circus glasses that we got for him on his first trip to the circus in March of 2009. This cape is priceless, and naturally along with all of Mattie's other things, I know exactly where it is in his room.

Poem of the day: When Friends Go To Heaven by Lisa Clark

They do not go alone
cause when friends go to heaven
part of us goes along.
When friends go to heaven,
our memories here remain
when friends go to heaven,
its our plan to meet again.
When friends go to heaven,
silently our hearts and souls do cry
for when friends go to heaven
there isn't an answer to why.
They never really leave us
they are in are hearts to stay
when our friends go to heaven,
they never really go away.


Today was a very busy day. I met with Christine (Campbell's mom) this morning to discuss Walk registration as well as signage for the Walk. We are working off of my crude map that I put together of the event, and we literally walked through every section of the map, to write down what still needed to be done. Christine and I think in a similar fashion, so over tea and this wonderful bread that she made me, we dialogued, took notes, and came up with a strategy of what needs to be done over the weekend. I found the meeting very helpful, and I am finding working with all my friends toward planning a successful Walk can be very stimulating. It is stimulating and exhausting all at the same time. I do notice that while jumping from one thing to another this week, it is hard for me to feel anything.

After I said good-bye to Christine, I met up with Ann and I gave her an update about registration and signs, and we discussed other Walk related matters. I then went to purchase some items for the Walk, and then commuted back to the city. At that point, I jumped on the Metro to meet another SSSAS mom, who is now becoming my friend. Lauren has been very gracious with Peter and I and has offered her professional input and advice to us on marketing and how to deliver an effective Foundation message and image. Despite working a full day, she carved out 90 minutes for us to chat and brainstorm. Lauren and I share a very important commonality. We both feel it is important to communicate on a personal level, to share aspects about ourselves with one another, and through that, we have a better understanding of each other, but also a better working relationship. I enjoyed my time with her today, and as always came alway with many ideas to explore and pursue. Each time I see Lauren she encourages me to write a book. Today she asked me... how is the book coming? I laughed but then realized Lauren was seriously, and a part of me now feels more emotionally ready to take on this project. Mattie's story and our story has to be told.

 I would like to share a story my mom sent to me last night. It is priceless and deserves to be told. I am glad she captured this for me, and also sent me the pictures illustrating the story. I am not sure why I can't recall seeing these pictures, but I am happy to have them in my electronic files now. 
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Mattie The Policeman with Grammie and PopPop on Roosevelt Island

by Virginia R. Sardi


On one of our many outings with Mattie on Roosevelt Island, while Vicki was occupied at home preparing for a teaching assignment, we encountered a very charming Washington, DC policeman in his police car patrolling the Theodore Roosevelt promenade where Teddy’s statue looks down benevolently on all who come to visit and ponder his profound words of wisdom on the surrounding marble tablets. The policeman noticed Mattie running around with us taking in all the sights as Mattie was inclined to do when he was animated and revved up for action. The policeman was taken with Mattie and his energetic romp through the park and stopped us, and invited Mattie to wear his hat, and check out his car. He even turned on the flashing red light on top of his car to get Mattie’s attention which immediately brought a reaction as Mattie fascinated, was transfixed as if by magic. Of course, Mattie could not resist even though he was somewhat intimidated by the authority represented by the policeman’s uniform and his police car. As a toddler, his shyness is captured in the photos but his determination to investigate, given the golden opportunity that has by chance fallen into his lap, is captured in one of the photos where you see him in the arms of the policeman while you will notice that his head is turned in the direction of the flashing red light and although I can only speculate about what was on his mind at that moment, I think he was probably trying to figure out how that flashing light actually worked and wondered if he could take it home and check it out. That picture captures Mattie in the moment and from my perspective it is a precious remembrance of how his beautiful mind could absorb like a sponge whatever he saw and use his highly evolved capacity to multitask and make the most of this unexpected adventure in a way that was as natural to him as breathing. I do hope these pictures capture the playful spirit of Mattie and touch your heart as his smile and demeanor did the policeman who spotted him in the park and gave him the thrill of a lifetime by making him a policeman for a few precious minutes on that memorable day!

______________________________________________________


I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Since so much of yesterday's blog was about friendship I found this poem. We recognize the effects of a death on a family but often fail to recognize the effect of a death, on friends especially when those friends are children. We (adults) often act as though we believe children don't understand or suffer or miss the person and that they will forget if no one talks about them for a while. The blog shows this simply isn't true and that children naturally both grieve and include the missing person in their lives if allowed to do so. I really think that their way is so much better and more honest and perhaps we adults should take a lesson from Mattie's buddies. As Nancy so nicely said in her response to you, humor should not be forgotten when grieving, especially if the person you are grieving for had a good sense of humor. That was so very true of Mattie; he certainly had his own brand of humor and he appreciated a good joke. That's the lovely thing about children, they can be sad one moment and find something humorous the next and there is no inconsistency or guilt in them for feeling that way. That is how it should be and we adults should do our best to use them as role models in this. As I practice today and work on my balance, I will send you the energy to find the balance of sadness and laughter that is present in everyone's life. Right now, you are tipped too far into sadness so I hope you can work on adding more laughter. I hold you gently in my thoughts."

Wednesday, May 12, 2010

Wednesday, May 12, 2010

Tonight's picture was taken in the spring of 2007. It was Mattie and Zachary's last year in preschool. Mattie and Zachary met quite frequently after preschool to play. Because their preschool was closer to Zachary's house, we landed up spending a lot of time there. However, on this occasion, Zachary came over to Mattie's home, and as you can see they built a train track together, that went from Mattie's room, down the hallway into my bedroom. They were having such a good time with each other that day, that I grabbed the camera and took a picture of them. Since I had the opportunity to see Zachary today, I thought it would be a nice way to capture the day, with this fond memory of Mattie and Zachary together. I think this picture captures their special bond.



Poem of the day: Mother and Child by Kelly Cummings

I was there.
I sat with you
the vigil through days
and nights, pleading with heaven
that I might take your place.
Heaven did not want me,
but you, my beautiful boy.
I was there.
I held your still hand,
never to clasp mine again,
as it so often did
when you were small…
How is it then,
that I look for you in every crowd?
The breeze blows open my door,
I turn to see if you are there.
Footsteps approaching,
I raise my eyes
expecting to see you,
hands in pockets, all smiles.
Then I remember anew,
that heaven has taken you.
My boy, my boy,
that you could sing to me
just one more song.
That I could hold you
in my arms once again,
if only for a moment.
How is it that I see you
around every corner?
How is it that I hear your voice
upon the evening breeze?
That lovely gossamer thread,
that binds mother and child
together,
That part of me that was you,
the part of you that was me,
Is still tightly woven together my son,
I hear you on the breeze
because you sing still,
out of heaven.
That gossamer thread
will lead me home to you,
wait for me my darling boy.
I love you.

Though I feel rather sad tonight, two things stand out about my day today. The first is that I had the opportunity to play with Abigail by the tree. Amazingly enough she knows exactly where we left off in our story line. The plot thickens however, because the two dogs (the main characters in the story), have just learned that they are actually neighbors. They did not know this fact, until they took the cruise together. But apparently they are happy to learn that they are from the same home town, and even live on the SAME street. To me Abigail is signaling me that this story is not going to end any time soon. It will only evolve over time. I am sure Abigail is not consciously aware of her decision to make the dogs neighbors, but I have noticed as the story evolves so does our friendship. In any case, I was honored that she wants the story to continue, and seems to enjoy her time climbing and chatting.

While I was outside with Abigail, Zachary and his mom, Katie, came over to visit. Zachary and Abigail were actually in the same preschool class, so in essence they know each other. Zachary also enjoyed the tree, and started to climb it as well. There is something about this tree! It is funny when I look at Abigail and Zachary (both the same age as Mattie), I try to wonder what Mattie would have looked like and been like if he were alive today. Alive without cancer. I haven't seen Zachary for a while, and when I saw him today, I could see he matured. Zachary is easy to talk with and actually quite a good conversationalist.

In between our playdate (Which is an interesting use of words, because Zachary, Mattie, and I had lots of playdates together. In a way, today was a playdate, but we were missing an important component, Mattie.), Zachary and Katie joined me on a walk to visit one of Ann's neighbors, Susan. Susan's daughter is a brain cancer survivor, and she wanted to give the Foundation a gift that she knows another girl coping with cancer would appreciate. I was very happy to accept this gift, and will be seeking a family at Georgetown Hospital to bestow this gift. Throughout the visit Zachary was engaged in our conversation, and was very patient while we all chatted for 20 minutes. In fact, I think Zachary was an important part of today's equation. It was as if we were picking up something from a neighbor on Mattie's behalf. Zachary was my Mattie representative, and I actually think having children participate on a team of Mattie Miracle workers may not be such a bad idea. Children respond to other children, and I think great lessons can be learned when you help someone who really needs companionship (a child with cancer). Zachary, Katie, and I spent about two hours together, and at the end of the visit we discussed the opportunity to get together again.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am so glad yesterday was a productive one for you. It seems everyone is hard at work and determined to make this walk a success. As you said, it is best right now to take things one day at a time. I was very touched by what Zachary said about being willing to come and spend a week with you. Not only did he have a close relationship with Mattie but he clearly included you in that relationship. That's very unusual for a 6-8 year old child. I have noticed how all the children you come in contact with seem to reach out and connect with you; Abigail is quite happy to have you as part of her storytelling team. What it says is that all of them recognize your willingness to suspend your adult demeanor and join them in real play. That's a huge gift, both your ability and their willingness to recognize and engage with you. I hope you can find a way to use it to help you and help others as you go forward. I hold you gently in my thoughts."
 
The second message is from my friend and colleague, Nancy. Nancy wrote, "There is so much I want to say in reaction to yesterday's blog. I'll try to be brief. First of all, I understand how you mark the week by the day on which Mattie died. My Mom used to do the same thing regarding her week with Friday. That is the beginning of our Sabbath and it marks a 24 hour time where, if one wants, time is focused on prayer and change of routine. It is a time of silence and individual awareness. It was the time when I came over to prepare our Shabbat dinner, stay, especially during the last year, and have my daughter, Cindy's family come for dinner and a special visit. What I also read is it is a time of your deepest grieving. I was glad that you could honor this and also have a very full day in which Mattie and your family were thought of in a lively and active life. The next area that caught my breath was how Zachary wanted to visit you and give you the joy of time with a loving child. Here is a message from Mattie, I think. It may be saying that he is wanting you to be active and involved and have people at the house, even children. This is a start for you and I know that you will have a beautiful time with Zachary. If tears come and some loneliness, that is understandable as well. Another comment is about humor. I am realizing just how important humor is to healing and the process of grieving. I used to think, if I laughed after Mom's death, I was not showing her the covet (Hebrew, for honor) of her importance in my life. Actually, it is the opposite as we used to share many times of humor, although, she didn't always appreciate my 'loud' laugh , in public. I used to tell her that unless someone came over to me and told me that I was too loud, she'd just have to deal. Humor was important in your life with Mattie and I pray that it will become important again in your memories of him. I believe that you will do this in Peter and your time and now may seem just too soon. My final comment is in chorus with Charlie about the issue of silence. The poem speaks well of our silences and beautifully, too. Those who know and care about you are always available for your silence, however, you want it to be. What I read in your latest writings is a desire to quell the silences of loneliness and sadness. This makes perfect sense, yet, you do not have to do it alone. We are all here!"

Tuesday, May 11, 2010

Tuesday, May 11, 2010 -- Mattie died 34 weeks ago today.

Tonight's picture was taken in May of 2009, at the March for a Mattie Miracle. Mattie was participating in the magic show at the event. He has his cousin, Nat, sitting in front of him and his buddy Brandon sitting on his right hand side. From Mattie's posture, I can tell that he really wanted to leap out of his chair and into the action, because typically he never sat at the edge of his wheelchair. Mattie also loved getting his face painted, and he had a big black cat painted on his cheek, which he was very proud of.


Poem of the day: What Do I Do With the Silences? by Brenda Penepent

What do I do with the silences,
Pressing ever against my heart?
The loss of you is unmerciful.
Where do I start?
I sit staring off into nothingness,
But inside my thoughts run wild.
How do I deal with the silences,
When the silence means losing my child?
I beg for sleep, but the dreams come.
I wake with a terrible cry.
I am tormented by your memories
As they slowly go marching by.
I'm so tired, and my heart ached with loneliness
In this house with its silence profound.
What do I do with the silences?
My sobs are the only sound.

Charlie sent me this poem this morning, and it captures all the "silences" Peter and I experience in a given day. In the silence of grief, we feel terribly lonely, isolated, and almost drowning in thoughts and feelings. However, we also have the silence of living in a house without a child. When Mattie was alive, there was ALWAYS noise, unless he was sleeping. Now Peter and I live a very quiet existence, mainly without the sound of the TV, laughter, friends coming by, and the list goes on. Our existence is quite different, dramatically different, which is quite challenging.

I went to Ann's house today for a meeting with many of the team leads of the various Walk Committees. As soon as I walked into Ann's house, I could smell that she had been baking. She clearly worked hard at putting together many wonderful things for us as we spent a good chunk of the morning together. Ann's dining room table was surrounded by 11 women. It was a very productive meeting, and what I appreciated was everyone was engaged, sharing their opinions, and brainstorming ideas. The women around the table today were really core helpers during Mattie's illness and death. However, their support hasn't dwindled, their passion hasn't lessened, and their commitment to us and the Foundation seems to have only grown. What can you honestly say about such a group of people? As I told Ann today, there is so much momentum behind the Walk, and it is keeping me very busy. I am not sure how I will feel once it is all over. But I will take it one day at a time, and try not to worry about something before it even happens.

I had the opportunity to chat with Katie today. Katie is Zachary's mom. Many of my blog readers know that Zachary was one of Mattie's closest friends. They became instantaneous buddies on the first day in preschool. I spent many afternoons with Zachary, and many times they incorporated me right into their play schemes. I was the one who was usually getting chased! Katie was telling that Zachary has been worried about me and has wanted to visit with me. So tomorrow, I will get my first opportunity to reconnect with Zachary. In fact, Zachary told his mom, that he could keep me company, and spend a week with me on occasion. I dont' know about you, but I thought that was a very heartfelt and touching comment coming from an eight year old. He would leave his family for a week, just to keep me company! It is precious. Mattie and Zachary had a very special connection, and it would be very easy in my mind for Zachary to move on, make new friends, and only think about Mattie on occasion. But somehow I think even to this day, Zachary feels a connection with Mattie. I think a friendship like that in this world is very rare. I am so happy Mattie had that connection with Zachary, but yet feel for Zachary who has remained behind, and wonder how he processes this fact and feeling.

I spent part of the afternoon with Ann talking about next steps. In moments when I get overwhelmed and I can't see the forest through the trees, she helps me strategize about things to really focus my time on and other things which I just need to let go. In the midst of working on the Walk, I have my raffle committee co-chairs who serve as my comic relief. In fact, Carolyn (a RCC mom and friend) gave me a gag gift today that had me laughing from the moment I opened it, and now it is on display in my kitchen. If you want to hear about it, just e-mail me. But it is in times of stress, and I have self imposed this stress because to me this Walk symbolizes Mattie, humor is a wonderful outlet.

I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend. Kristen wrote, " I wish I had the power to make your pain disappear...I wish I could chase away your tears. For now though, I will simply keep you in my prayers and my thoughts and just hope to make a little difference in your day. Thinking of you, this Tuesday and everyday."

The second message is from my friend, Charlie. Charlie wrote, "I read your blog and was profoundly touched by the card Tamra gave you with the quote "when there are no words...... know that the silences are carrying the thoughts and prayers of all who love you." This is so true. Many people don't understand that silence is a gift. Most of us can't stand silence so we strive to fill it with words of little meaning, but others know that the true words of the heart, of the soul can only be heard in the silence. That's why Quakers sit so long in silence in prayer meeting, why some monks take a vow of silence, sometimes words are not only not enough, they get in the way. Sitting in silence with someone is a very big gift. As you can tell from what I am writing here and the poem for today, there are different kinds of silences, some lead to understanding while others are steps on a path that lead nowhere. When you find yourself on that path, the one that isn't where you want to be, know that there are many of us out here, holding out a hand and willing to sit with you in the silence of sharing and understanding and that you are not alone. Today, as I practice, in my own silent space, supported by those around me, I send you the energy and the certainty that I feel of being part of a community of souls. I hold you ever so gently in my thoughts.

Monday, May 10, 2010

Monday, May 10, 2010

Tonight's picture was taken in May of 2009 at the March for a Mattie Miracle. Two of my students, Ariel and Tess, were volunteering that entire day to help children at the craft's table. Mattie visited that table and decorated a bag that said, "#1 Mom!" I still have that bag, it sits in my bedroom, and I recall how proud Mattie was to give me that bag after the walk was over. Ariel and Tess continue to read the blog and remain connected to us and Mattie's story. I am deeply touched how a seven year old could impact the lives of these young women, so much so that Ariel is studying to be a pediatric HEM/ONC nurse, and Tess is coming back this year to volunteer at the Walk.  Somehow this illustrates to me the effect Mattie has had on others in a very short period of time.

Poem of the day: Sweet Child Of Mine by Kathleen Cowan

Where are you now, sweet child of mine
Where are you now
Are you the whispering in the wind, the gentle breeze
Are you all the things I do not understand
Are you the heavens and the earth
Where are you now
Are you my protector in the dark
Are you there to see the tears that fall from my face
And wipe them gently away and give me the will to go on
Does your courage and bravery in life
And the fact that I was always
So proud of you, and still am
Give me the strength and inspire me to tell
The world how wonderful you are
But where are you now?
I was always there for you
Did I let you down
When you had to take those last steps on your own
Did I let you down as I held your hand
You have gone to a place and I could not go with you
But some day, my darling, I will come to you again
As you are with me eternally
You are every breath I take, every action I do
You are in my dreams, you are my dream
Where are you now, sweet child of mine
I am the sound of your breathing
I am the sound of your heart beating
I am your life and you are mine
Together for eternity
Your loving son always

I had the opportunity to meet with the logistics planning committee for the Walk today. This group is being headed up by Tamra and Liza (both SSSAS parents and friends). The irony is both of these women have children on the upper school campus, and during the year Mattie was at school, our paths never crossed. Mainly because our children are on different campuses of the school. However, as the word got around the school community about Mattie's cancer, these ladies mobilized into action. I completely credit Mattie for bringing our worlds together.

Tamra and Liza, along with three wonderful school faculty and staff members, met with me today to discuss the set up and logistics for the Walk. I truly enjoyed the meeting and the tone of the meeting. Everyone is on the same page, to make this Walk a success and a good experience for attendees. I am not sure how Peter and I got lucky enough to have such a wonderful team to turn to. Each request I made today was greeted with eagerness to make my suggestions work out. A remarkable feeling, and after the day I had yesterday, I really valued this support and understanding.

What I have come to see is that I should not have elected to be alone yesterday. I know many women in my community who have lost their moms, and they too felt directionless yesterday. Seems to me in the future, we should just be directionless together, and have the emotional support and camaraderie of one another.

After the meeting, Tamra handed me a beautiful gift wrapped package. It was gift wrapped in butterfly wrapping paper. She said she wanted me to have this because she knew yesterday was a difficult day and that because she loves me. I opened up her card this evening, and on the front of the card it read, "when there are no words...... know that the silences are carrying the thoughts and prayers of all who love you." I needed to read this quote, and I needed to absorb this quote. It was as if this card was written solely for me. Tamra's card delicately allowed me to see my misinterpretations of the silences. That the silences I felt yesterday were not people who have forgotten about me, but instead the reactions of others not knowing what to do to help me. This card now sits on my desk, and when I have doubts and are unsure about peoples' feelings and intentions toward me, I will read this card. Needless to say the card and gift cheered me up today, and her gift was filled with scenes of flowers and butterflies which will always remind me of Mattie.

I spent the rest of the day at home, working on Walk materials, and communicating back and forth with many of our other Walk team leads. In that sense, Peter and I have been blessed to be surrounded by people who want to help us and are as passionate about pediatric cancer as we are. Amazing!

As I was cooking dinner tonight, I stopped for a minute and realized I wasn't feeling well. I worked through that feeling all day today, for what reason I don't know. It is almost as if I not only am closed off to my feelings, but also closed off to the physical symptoms I am experiencing.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I think Sammie's mom has it right, you have to learn to do it over and over again. To get up and to face another day without your child, another holiday, another average day. When your child is gone and you have that "weight" that you carry around, it makes keeping your balance in the world more difficult. I am sorry that you did not feel Mattie with you yesterday, perhaps time elsewhere is not like here so your message may be received on another day. Sometimes these messages are received when we are least expecting them. Perhaps as Nancy said, the message came the day before in the laundry room; maybe the weight of the holiday would have blocked the receipt of that message on Mother's Day. I, like the other women who wrote to you yesterday, feel your impact in my own mothering skills. My son is grown and yet we have our moments of disagreement; I remind myself that none of it is all that important, what is important is that we love and care for each other, that the lines of communication are open and that there is mutual trust and respect between us. I am now less likely to lose my temper, more likely to give him the benefit of the doubt and the relationship continues to grow in the right direction because of that. I would give anything that I could make it so for you and my prayer every day is that you will be in a position to do that again; to work on a relationship with your child and help him or her grow to be the adult you know they can be. As you recover from yesterday and all the emotion contained in the day, I wish you spaces of peace today. I hold you gently in my thoughts."

Sunday, May 9, 2010

Sunday, May 9, 2010

Tonight's picture was taken last Mother's day in the PICU. Mattie worked with Jenny and Jessie (his art therapists) to create a beautiful vase out of clay. He used a pottery wheel and even glazed the vase himself. Then with Jenny and Jessie's help, Mattie created tissue paper flowers. This was his Mother's day surprise to me. This vase now sits in our dining room, and it will always remind me of Mother's Day in 2009. I simply did not know when I received this gift, that it would be the last Mother's day gift I would receive. To say that I miss Mattie each day, not only on Mother's Day would be a profound exaggeration.

Poem of the day: First Mother's Day by Charlie Brown

This is my first
Mother's Day without you,
How I am to survive it
I haven't a clue
I don't know how I'm
To get through the day
Mattie, oh Mattie
Why couldn't you stay?
Memories and pictures
Are all that is left,
Of a beautiful boy
My heart is bereft
It was eight months ago
Right to the day,
When your fight ended
And you went away.
No one to call me mom
Or to make me a card,
I think this day will be
Always much too hard.
The truth is without you
I am unable
To say that "mom" is
Any more than a label
Maybe some Mother's Day
Will again come to be
A day to celebrate
"Mommy and me"
But this Mother's Day
Is marked with my tears
Too painful to spend
With Mattie's friends and peers.
So all my friends
With children to hold
Be patient with me
And my story, now told.

Before I begin expressing my thoughts and feelings for the day, I want to thank many of you for contributing to the Foundation this weekend in honor of Mother's Day. Your thoughtfulness was greatly appreciated and felt. I also thank you for the e-mails you sent me today, they certainly helped make a very difficult day more tolerable. It is my hope that all the moms reading this posting tonight know just how important your role is in your child's life, and that it is my hope you never take for granted the gift of having a healthy child.

As Charlie's poem accurately reflects, a first Mother's Day without your child is deeply painful, and if I tried to explain the sense of isolation, loss, and despair I feel, I most likely would have a hard time, because I feel limited by the English language. There are just so many words in our vocabulary to describe grief and the feelings associated with it, but from my perspective they do not come close to honing in on the true depths of the day. In my usual state of feeling overwhelmed, I have retreated inward. I most certainly did not want to talk about my feelings or talk about anything else today. I felt paralyzed in thoughts and feelings.

Over the course of the last day or so, I have been e-mailing several other moms who lost their children to osteosarcoma. In fact, three other children died within a month of Mattie. I feel for these moms who are experiencing this level of pain, especially when this weekend was not only Mother's day but also an anniversary mark of their children's death. Many of you will have the opportunity to see the pictures of these beautiful children (Sammie, Emma, and Keaton) at our upcoming Walk. I feel that seeing the faces of these children is important. Their suffering has to serve some sort of purpose for us, and these children show us that pediatric cancer is very real, it doesn't discriminate, and it can take away lives and impact families forever.

I had the opportunity to read Sammie's mom's posting today on her blog. Chris wrote, My first Mother's Day without you reminds me that I have to learn to do this over and over again. Here is something I have learned... the calendar marches on no matter what I wish for." Chris is exactly right. It isn't the first Mother's Day that will be hard, it is every Mother's Day, and frankly just about every day. Grief can be all consuming, and the issue of losing a child is ever present. It is like an imaginery weight that you carry around with you. Some days, you may not focus upon it as much, but you know that it is there, and will never go away. Adjusting to living with this feeling requires a great deal of effort and patience, and some days I manage it better than others.

I am not sure what I was expecting would happen today. Perhaps a sign from Mattie, a feeling, something! Trust me I was looking, and I was feeling, but I did not feel connected to Mattie. I was absorbed instead in feelings of isolation, and saddened not to receive Mother's Day cards, and to feel the love that so many mothers may take for granted. I am very grateful that Margaret (Mattie's preschool teacher) sent me a beautiful butterfly card in the mail. It was very touching because she expressed her thoughts using some of the language that Mattie and I used with each other. Such as "you are my one and only" and that Mattie loves his "una moona." I read those lines, and started crying, because I remember saying these things like it were yesterday. Peter also gave me a card as well, and on the front of the card it said, "happy Mother's Day from both of us!" It meant a great deal to me that Peter helped to verbalize what Mattie most likely would have been saying to me.

Charlie sent me a link to a song today called, "Dear Mr. God." She encouraged me to watch the beginning part of the video closely. When I watched it at first, I did not understand completely what I was watching. So I played it again. This song is very powerful for anyone who has experienced cancer. Especially the cancer of a child. What the song captures is how children with cancer are special. They have a special force within them, a force that makes them wiser than their years, a force that makes them understand the incomprehensible, and a force that causes all of us to take notice, bond together, and in essence have a life changing experience. After I watched this video, I could tell this was based on a true story, so I did some digging and found out this song is the theme song of a new movie called, "Letters to Mr. God." Unfortunately this movie is only being played in certain parts of the Country. I included a synopsis to the movie below and a link to the video Charlie sent me as well as a trailer to the movie in case you want to hear what I was absorbed in this morning.

The story line of the movie: Letters to Mr. God

The story of what happens when one boy's walk of faith crosses paths with one man's search for meaning-the resulting transformational journey touches the lives of everyone around them. Tyler Doherty is an extraordinary eight-year-old boy. Surrounded by a loving family and community, and armed with the courage of his faith, he faces his daily battle against cancer with bravery and grace. To Tyler, God is a friend, a teacher and the ultimate pen pal-Tyler's prayers take the form of letters, which he composes and mails on a daily basis. The letters find their way into the hands of Brady McDaniels, a beleaguered postman standing at a crossroads in his life. At first, he is confused and conflicted over what to do with the letters. But the decision he ultimately makes becomes a testament to the quiet power of one boy's shining spirit and unshakable faith.

http://www.cmt.com/videos/the-warren-brothers/498880/dear-mr-god.jhtml

Trailer to the Movie:

http://www.youtube.com/watch?v=sGEfocWPeP4


A couple of months ago, I received an article in the mail from my colleague and friend, Denise. I found this column so meaningful that I kept Denise's letter, so that I could post "Mothers Who Have Lost a Child" today. I read this column again today, and I commend the late Erma Bombeck who had the where with all to understand that Mother's Day isn't always a happy occasion for all of us. For many of the moms out there who are reading this tonight who have lost a child, I am thinking of you and I hope you find some meaning in this article.

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Mothers Who Have Lost a Child - May 14, 1995 by Erma Bombeck

If you're looking for an answer this Mother's day on why God reclaimed your child, I don't know. I only know that thousands of mothers out there today desperately need an answer as to why they were permitted to go through the elation of carrying a child and then lose it to miscarriage, accident, violence, disease or drugs.

Motherhood isn't just a series of contractions, it's a state of mind. From the moment we know life is inside us, we feel a responsibility to protect and defend that human being. It's a promise we can't keep. We beat ourselves to death over that pledge. "If I hadn't worked through the eighth month." "If I had taken him to the doctor when he had a fever." "If I hadn't let him use the car that night." "If I hadn't been so naive. I'd have noticed he was on drugs."

The longer I live, the more convinced I become that surviving changes us. After the bitterness, the anger, the guilt, and the despair are tempered by time, we look at life differently.

While I was writing my book, I want to Grow Hair, I Want to Grow Up, I Want to Go to Boise, I talked with mothers who had lost a child to cancer. Every single one said death gave their lives new meaning and purpose. And who do you think prepared them for the rough, lonely road they had to travel? Their dying child. They pointed their mothers toward the future and told them to keep going. The children had already accepted what their mothers were fighting to reflect.

The children in the bombed-out nursery in Oklahoma City have touched more lives than they will ever know. Workers who had probably given their kids a mechanical pat on the head without thinking that morning are making calls home during the day to their children to say, "I love you."

This may seem like a strange Mother's Day column on a day when joy and life abound for the millions of mothers throughout the country. But it's also a day of appreciation and respect. I can think of no mothers who deserve it more than those who had to give a child back.

In the face of adversity, we are not permitted to ask, "why me?" You can ask, but you won't get an answer. Maybe you are the instrument who is left behind to perpetuate the life that was lost and appreciate the time you had with it.

The late Gilda Radner summed it up well: "I wanted a perfect ending. Now I've learned the hard way that some poems don't rhyme and some stories don't have a clear beginning, middle, and end. Life is about not knowing, having to change, taking the moment and making the best of it, without knowing what is going to happen next. Delicious ambiguity."
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I would like to end tonight's posting with five messages I received today. The first message is from my friend, Charlie. Charlie wrote, "Vicki, I know yesterday was a tough day and today is unlikely to be any easier. I am so glad that Peter is there, understands and works to pull you outside. The article I sent you about nature being a healing force is very true and I hope you spend some of today outside, enjoying the sun and perhaps even getting a message or two from Mattie. I agree with you that you were meant to meet the woman in the laundry room. The Turks coined the word Kismet to mean fate or destiny (apparently it came from an earlier Arabic word) but I do believe that some "meetings" of people were meant to be at a particular time and place. She had a message for you, one that many of us feel as well but sometimes we "hear" things better from a stranger since we believe that they don't have the same agenda as those who know and care about us. I can tell you that you have had a huge impact as a teacher on so many of us. You have left your mark on so many hearts and minds just as Peter's teacher did. I hope that you can find your way back to that someday, but if not, it will be because you have found your way to the next important mission you have ahead of you. As Susan so eloquently said, you are still a Mom, that hasn't changed, just that your grasp of it is bigger now. You hold the image for all those you help in your blog and in the foundation. As you go through today and deal with the difficulties of it, know that we are all thinking of you and Peter and Mattie and hoping you find those messages of love coming into your space. I hold you gently in my thoughts."

The second message if from my sister-in-law, Lisa. Lisa wrote, "My heart goes out to you all days, but maybe today most of all. We're thinking of you and hoping that today melts into tomorrow. Mattie was so lucky to have you, just as I know how lucky you were and are to have had him in your life. The definition of a mother remains vague and complicated and so painful, but you will forever be an extraordinary mother."

The third message is from a friend of my sister-in-law's. Lesley wrote, "As you enter a new first today, my thoughts are with you. I know you often wonder what the impact of the blog has been on your readers. I am sure that I am not alone in saying that you have given us all the courage to parent better, communicate more effectively, and put small challenges in perspective. These are all attribute you demonstrated to your readers throughout Mattie's courageous battle."

The fourth message is from my Boston College friend. Angie wrote, "I think about you every day but I know this is an especially difficult day for you. I wanted you to know that at church today I said special prayers in tribute to my mom and Tom's mom (who are no longer with us),  and to you for being such a great mother. Yes, you will always be a mom!"

The fifth message is from my friend and colleague. Nancy wrote, "I've been reading the blog and it always sets the tone of my email message. As I lounge today, ( we shared family time last Sunday and yesterday, so I told Cindy and Hilary to enjoy their day). The truth is that since my Mom died, almost 2 years ago, Mother's Day has never felt that important. You see for me, every day that I spend with my children and grandchildren is Mother's Day! That's why I try to remind you that you are always Mattie's Mom and he is sending you Mother's Day wishes all the time. I know that Peter and you miss the touch of his hand, the questions he asked, the smiles, the frowns, and as a song says ' the ups, the downs.' Remember card creators told us this first Sunday in May is Mother's Day, not true for a Mom like you. A friend once told me that some relationships have a set time. I understand that this is hard to hear when you are missing Mattie as much as you are these last few days, yet, so much happened during his short life. So much is still going on and will continue to do so with the foundation and all of the connections that were begun for your family, two years ago. I agree with you that there was something spiritual about your meeting your neighbor in the laundry room. Another message from Mattie Moon! He wants you to be free in your endeavors to react as you do with compassion, empathy, and love. He knows that you are made to love many and work to make the world a loving place. I agree with Susan that once you are a Mom, no matter what happens, you always retain that title. I, also, believe that someday you will be able to give your love to another child/children. Children touch us in many venues and there are many who need attention and care. When I went to the cemetery this week, I passed a billboard, whose statement moves me every time I drive on that road. It said; The Greatest Job We Do is When We Stoop Down To Help A Child! You've done this for over 8 years with Mattie and will, one day, be free for another. I know it is chilly in DC today as it was in NY. I pray that Peter and you did something special and that you had a restful day. Today is a day to remember that you are a Mom!"