Saturday, November 28, 2009

Saturday, November 28, 2009


This picture was taken in November 2005. Mattie was around three years old and full of energy and curiosity. As he was standing by the coffee table in the picture, he was assembling a puzzle. Mattie just understood how the pieces of a puzzle fit together and he was persistent enough to look for patterns in the pieces. Mattie spent many a day in the hospital assembling puzzles, and like Legos, they were a God sent. Mattie could easily put together a 250 piece puzzle independently.



Poem of the day: God's Garden

God looked around his garden and
he found an empty place,
He then looked down upon this earth
and saw your tired face,
He put his arms around you
and lifted you to rest.
God's Garden must be beautiful,
He always takes the best.
He knew that you were suffering,
He knew that you were in pain.
He knew that you would never get well on earth again.
He saw that the road was getting rough
and the hills were hard to climb,
So he closed your weary eyelids and
whispered"PEACE BE THINE."
It broke our hearts to lose you,
but you didn't go alone,
For parts of us went with you
the day God called you home.

A few days ago Ann had mentioned to me that she was looking for a holiday centerpiece for her table. So yesterday, to try to pull myself out of the terrible mood and state I was in, I decided to look around the internet for centerpiece ideas. I checked out all the usual stores I could think of, and then decided that perhaps there was a way to make an unique centerpiece and accentuate it with things I could also purchase. I finally found something that looked doable, and then decided to just elaborate on the theme. Unlike Friday, this morning, I decided to get up early, get dressed and to go shopping. Peter came along with me on this project, and for a few hours, we were able to take our minds off of things and focus on something else for a change. As I told Ann, this was a good and healthy distraction. In fact, I think one of the best ways to deal with grief, besides of course processing it and talking about it, is to have distractions. Without them, living with the intense pain from moment to moment is unbearable.


While shopping at the craft store today, I heard Peter talking with someone. When I turned around, I saw it was Olivia. As many of you know, Olivia is a SSSAS parent and also helped to coordinate Mattie's Celebration of Life reception. We had the pleasure of chatting with Olivia and meeting two of her daughters. We discussed craft projects and also got a chuckle how she and I seem to meet up in stores without planning it. After the day I had yesterday, I felt the need to push myself to get out of our home today, because I couldn't have two days like that in a row.


In the midst of driving from one store to the other today, we were stopped at a traffic light. I happened to look over inside the car next to us. In the backseat of the car was a baby in a car seat. The baby was a boy, and like the beauty of all babies, was taking the world in with his hands and fingers. Just watching the motions this baby was making reminded me instantly of Mattie and I began to cry. I remember those days where his fingers seemed like sensors or antenna of some sort, picking up every aspect and nuance of his environment. The beauty of the mind, is how certain sights, sounds, or fragrances bring me back in time and it isn't always predictable what will trigger these emotions.

This evening, I went over to Ann's house and had dinner with her family. Ann made homemade turkey soup, which was a soup her brother loved. Over the course of reading this blog, many of you have learned that Ann's brother died of cancer two years ago. So in essence making this soup after Thanksgiving and having her family share in it, is a tradition that honors the memory of her brother. I was honored to be a part of this. We also watched a Sandra Bullock movie tonight, The Proposal. As some of you know, I am a big Sandra Bullock fan, however, though this wasn't her best movie, it was nice to watch it and to take my mind off of sadness, physical pain, and grief for a while. Seems to be my mantra these days, but this sad commentary is my life.



I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "First, I loved the picture of the azaleas that you posted. That is such a great reminder that spring will come again. I too, saw the ad for the quiz on depression but I did not take it. As you said, amazing that they did not include a question on grieving since it impacts a person physically, mentally and emotionally. This is just going to be a really tough year as you have to find ways to deal with traditions you really cannot do anymore. My heart goes out to both Peter and to you; men tend to be "doers" in their grief and I hope that Peter can find some other way/thing to do to honor Mattie's spirit this holiday season. To look out and not see lights or to put them up and know that Mattie isn't here to help with them; this has to be so difficult either way. In some traditions a candle is lit at this time of year for those who are not coming home for the holidays (or at all); would putting a single electric candle in the window help or not? Finding your way through all this has to feel like an emotional minefield and I wish you strength and endurance as you weave your way through. I do think you need to find a way to care for yourselves physically as well as emotionally right now as difficult as that may seem. Please be kind and gentle with each other; I am praying for you today."

Friday, November 27, 2009

Friday, November 27, 2009

Tonight's picture was taken in the spring of 2005. Toward the end of March, the US Botanical Garden in Washington, DC has a beautiful display of azalea bushes. They are simply glorious, and each spring we would take Mattie to see them. The beauty would go on for miles at the Botanical Gardens, and Mattie would love to follow the trails around to see each bush and each unique color. Today was a frigid day in Washington, DC, and looking at azaleas reminded me of better weather and happier times with Mattie.

Poem of the day: Mattie memory - by Charlie Brown

Thank you Charlie for writing a poem about Mattie and my feelings about him! That is a lovely Thanksgiving gift.

It's so hard to go on without you

So hard to face another day

I want you here with me

To watch you grow and play

Sometimes I almost forget

That you are no longer here

I turn and look for you

Then I face my biggest fear

That somehow I will stop remembering you

When the pain finally goes away

I will walk through a life without you

Never understanding why you could not stay

All the colors of my world are muted

Even the leaves seem brown and gray

You added the spice to the recipe of life

But now you've gone away

I will miss you forever my Mattie

Every day til my life is done

You live in my heart now always

And blaze in memory like the sun.

Today I spent the majority of the day in bed and not feeling well. I am not feeling well physically and emotionally. Certainly the physical ailments are a lot easier to treat to some extent than the emotional ones. Though my physical issues are chronic in nature, which makes them harder to treat. None the less, for the first time today I realized I was beyond sad, I was depressed. So much so that I had absolutely no energy to get out of bed for over half the day, and nothing seemed to interest me enough to physically motivate me to move. Based on the time of year it is, with the weather changing, and the holidays approaching, you will start seeing many more commercials on TV for depression. Well I happened to watch a holiday movie, of all things, today on TV (mostly because it had Jaclyn Smith in it, and as a product of the 70's and watching Charlie's Angels, I became a Jaclyn Smith fan) and during a commercial break, WebMD was promoting their "depression health check" survey. So later on today out of curiosity, I went on line to look at the survey. Mind you I am very familiar with the criteria for clinical depression and have administered depression assessments over the course of my career. I suppose going on line was a two folded venture. One I wanted to see if I could answer these questions honestly for myself, but two, I wanted to see how accurate a diagnosis such a survey produced (since I am always concerned about how mental health issues are presented to the public). First of all in my case, if an instrument did not assess me as depressed at this point, then I would say something was gravely wrong with the instrument. But what truly troubled me about this on line assessment is that it made allowances for other issues to be the cause of depression such as being on chemotherapy, being diagnosed with a physical illness, etc. But guess what important question wasn't asked and wasn't even taken into account? The question of grief! No where on this survey did it ask whether you recently suffered the death of a loved one. What a drastic oversight. Dealing with grief and clinical depression can look very much the same, which is why it is so important to talk with someone qualified before jumping to conclusions.... and I don't mean your primary care physician, who has zero to NO training in mental health assessment and diagnosis. It is times like this in my life when I feel my clinical training is a God sent.

Today was a difficult day for Peter too. Mattie and Peter had a special day after Thanksgiving tradition. It was on this day that they would put up their Christmas light display outside in our complex. The first year they did this, the lights were modest, but with each passing year, the light display got bigger, brighter, and bolder. Last year was an incredible display, in which neighbors thanked us and even came out at night to photograph the scene. Peter and I reflected on this today, and unlike in years past, I won't be looking out our windows and seeing lights this year. I can only see darkness. Seems to be a metaphor of our lives. The picture on the left features the addition Mattie picked last year to add to the holiday display. He acquired a new light each year! He picked the dog because it reminded him of JJ, our resident Jack Russell Terrier.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am glad that you spent Thanksgiving with loving friends and I am sure the day while pleasant was difficult for you. I hear that even discussing Christmas seems pointless and that finding a place that will be free of grief is impossible. You are right, you carry it within you and there is no where to go to outrun it. What you can try to do is find a place where you feel comfortable, you can find some moments of serenity (like at the spa) and allow your grief without judging it. I enjoyed your mom's story about Captain Mattie and the Power Station-Mattie was a "powerhouse", he led a life of extraordinary intensity and energy and he "powered" the games he shared with friends and family. To suffer that loss is to go from the sun blazing to a grey foggy day. Don't look for what will make you happy this holiday (I don't think anything will) but look for a place you can be comfortable and open with yourself and Peter and let it proceed from there. Please be kind to yourself as the days to the Christmas count down; while none of us truly knows the depth of your pain, we all are thinking of you and cradling you gently in our thoughts."

Thanksgiving Day

Thursday, November 26, 2009

Tonight's picture was taken in November of 2007 on Roosevelt Island, near Washington, DC. This was one of Mattie's favorite nature walks and in the fall, he loved to search for wrinkly green hedge apples, which you can see him holding in the picture. We had this picture of Mattie enlarged to the size of a poster and it is framed in our living room. I remember taking this picture, and particularly how proud Mattie was of his hedge apple finding.


Poem of the day: THE MESSAGE

What mean you by this weeping?
To break my very heart?
We are all in God's keeping,
And therefore cannot part.
You there - me here, tho' parted
We still at heart are one;
I just in sunshine,
The shadow scarcely gone.
What tho' the clouds surround you,
You can the brightness see.
'Tis only a little way that
Leads from you to me.
I was so very weary
Surely you could not mourn,
That I a little sooner
Should lay my burden down.
Then weep not - weep not,
my darling,
God wipes away all tears,
'Tis but a little while,
Though you may call it years.

Since Mattie has died, I haven't had the desire to talk on the telephone. I am not sure exactly why, other than to me this is no longer a way I feel connected to people. After living in a PICU for 13+ months, my main form of connections became my Blackberry. So in many ways, I feel more comfortable writing about my day, my ups and downs, and my feelings rather than talking about them. However, this is beginning to change. I am slowly being able to verbalize what is going on, or at least need the opportunity to try to express these thoughts and feelings. Before I did anything else, I wanted to call my mom and wish her a happy birthday today. Prior to Mattie's illness, my parents and I spoke quite frequently, but the pain of his death has been hard on us, and for me I wasn't ready to talk about things. It is also hard to talk to those I am most close with, because we are all going through the same intense grief. I had a nice conversation with my parents, and we chatted about a host of things, one of which was the importance of getting away for a while.

Peter and I spent the day at Ann's house. Ann's mom, Mary, was visiting as well. Mary admired Mattie's necklace on me, and as she started talking about it, this caused me to tear up. Mostly because his necklace is a constant reminder to me of the fact that he is no longer with me. The only physical connection I have to Mattie is through this necklace he made me. In these moments when I tear up, Mary understands this well. We played board games and other games with Ann's children and of course had the opportunity to share a lovely Thanksgiving day dinner with them. At one point today, I was sitting in Ann's dining room with her mom, and Abigail and Ann came in. I was sitting in Ann's seat, and I joked with Abigail that today I was "mom." We both laughed and then I said she has only one mom. She then turned to me and said that I used to be a mom. Very well stated, exactly what I have been saying all along. On some level I will always be Mattie's mom, but my role as "mom" ended on September 8, 2009. When you become a parent, this role defines you. However, what happens when your child dies, what happens to this role that once filled your world? What gives your life the same purpose and meaning? Emphasis on the SAME! Sure in time one could re-engage with the world and with that make accommodations by adding new aspects to one's life. Whether that be a job, writing a book, or running a Foundation, etc. But are any of these things comparable to raising Mattie, sharing his love, and experiencing his life? My answer would be NO! Thankfully most of my readers will never have to walk in my shoes to understand the true depths of what I am expressing, but it is my hope that you will just believe me when I say nothing can replace or fill the void left by Mattie in my life.

Peter and I started to have the conversation with Ann tonight about Christmas. This is not an easy discussion for us. Mainly because nothing at this point sounds like a good plan. Peter and I are very certain we do not want to celebrate Christmas. We are not decorating, not sending out cards, or giving gifts. However, the question is how to pass the day this year? We are discussing different options, but to me, nothing seems interesting or plausible. In fact, you could ship me clear across to the other side of the world, and I most likely would feel the same way. The grief and feelings are within me, and are not location dependent.

I would like to share a story that my mom wrote with you tonight. My mom and dad created a whole play scenario around a character called "Captain Mattie." Mattie loved this game, and Thanksgiving seemed like the appropriate time to share this because I will always give thanks to Mattie's creativity.

______________________________________



The Captain Mattie Capers
Part I
By Virginia R. Sardi

In looking back, it is hard to remember exactly when and how Mattie, Grammie, and PopPop initiated the game, “Captain Mattie and His Electric Power Station” but over the years we played it together many times starting from his earliest days at Resurrection Preschool until the week before he died. It was his favorite after school activity and it is no exaggeration to say that he never grew tired of it. What is remarkable is how Mattie always found ways to reinvigorate the story by inventing new plots with fascinating characters which kept the entertainment level of “making believe” so high we were guaranteed that the fun and adventure inherent in “the game” never diminished for any of us.

In the early days, Mattie made things with tinker toys foreshadowing his passion to build with legos as he developed into a little boy. One afternoon, he decided to use his tinker toys to build an electric power station which had imaginary controls to handle the flow of electricity that could be turned on and off. I asked Mattie, “What is this power station going to be used for?” and his answer to that question is the key to understanding how the game began. As background information it is important to note that he always had a major fascination with electrical wiring, cables, outlets, handles and knobs other children were not even aware of, so I thought this question would elicit an interesting response and it did! Mattie said “Grammie, my power station will give electricity to all the little people who live in my city!” I asked him where his city was and not skipping a beat he responded that he would create one. And so he did. It was a modern city made up of houses, his little people, cars, boats, trains, planes and helicopters. It also was to have a hospital and a school and all would be put to good use over the course of many games.

As in real life, Mattieville needed a government to regulate good behavior so that everyone could live happily together. It was only natural for Mattie to become its leader because he created the city and everything in it. Being a leader was a very real concept to Mattie because it was part of his leadership training at Resurrection Preschool. Every day a child in his class would be selected to be the leader for that day and he just loved the times when he was chosen. He talked about how he liked to be at the head the line when his classmates were asked to line up and how much he enjoyed leading the scheduled activities for the day. He transferred the concept of leadership learned at school and applied it to “the game.” So in recognition of the special role he had in creating the electric power station and the city, he wanted to be known as Captain Mattie, the leader of Mattieville, whenever we played “the game.” Captain Mattie seemed to “fit” his personality from the start and we often referred to him affectionately as Captain Mattie even when we were not playing “the game.” However, all good Captains need help to be effective and Captain Mattie figured out he needed an assistant to run a city like Mattieville. His first step was to deputize Grammie as his Chief Assistant, calling her Captain Grammie. Now PopPop’s role was very different. He challenged the harmony and peace of the city in an effort to undermine the leadership of Captain Mattie. The little people called him PopPopBadGuy but he demanded that they refer to him as, Captain PopPop BadGuy and was known for playing all kinds of pranks and mean tricks on them while openly making empty promises to fool them into making him their leader! His goal was to capture Captain Mattie, put him in jail and take over the city for himself and his hooligans. It was up to Captain Mattie with Captain Grammie’s help to outwit him and counteract Captain PopPop BadGuy’s plots to make trouble for the little people and make sure none of them succeeded. One of Captain PopPop BadGuy’s favorite mean things to do was to take away the city’s electricity by shutting down the power station that Captain Mattie operated just for them. Captain Mattie’s job was to handle each crisis with creative intervention, thwarting Captain PopPopBadGuy’s efforts to sabotage the city, and keep the lights on and the energy flowing in Mattieville! A tall order when the action started!

There were different story lines that we played for weeks at a time. As an illustration, one of the evil plots perpetrated by Captain PopPop BadGuy was to seed the sky over MattieVille with rain creating a terrible flood. Many scenarios, like this one, had creative input from Captain Mattie who had heard about Hurricane Katrina and insisted on including a life threatening flood like the one in New Orleans into our game making it more realistic. The difference of course was that the Mattieville storm was to be attributed to the evil work of Captain PopPopBadGuy. As the city’s first and only hero, Captain Mattie went into action with his assistant, Captain Grammie, rescuing all those who were stranded or in danger of drowning with his boats, helicopters, trucks and planes. We took the injured to hospitals, gave them safe places to stay until Captain Mattie could get the city under control and put an end to the wicked attempted takeover by Captain PopPopBadGuy. In the end, after many setbacks in which Captain PopPopBadGuy had the upper hand using his powers to sink the boats, destroy the planes, and sabotage the power station, Captain Mattie, with a little help from Captain Grammie, finally saved the day by apprehending Captain PopPopBadGuy and putting him in jail to stop his destructive rampages. Every episode had a happy ending with Captain Mattie, the hero, and Captain PopPopBadGuy, the villain. The good citizens of MattieVille knew their hero, Captain Mattie, would look out for them so they had nothing to fear and had confidence that no matter how diabolical the plot invented by Captain PopPopBadGuy, Captain Mattie would always triumph in the end!

That was the gist of “the game” for all of the happy years when Mattie was a healthy, happy little boy engaging us in his fantasies on which he was creating a series of stories that gave us insight into how he perceived the world around him and his place in it. It wasn’t an accident that he was always the hero of the story because I think Mattie saw himself as someone who took care of others and took responsibility for helping those in need. His mother told me of an incident in which she and Mattie were instrumental in rescuing baby ducks caught in a drain outside of their housing complex. On their walk, their attention was captured by the behavior of the mother duck who was honking for all she was worth to divert them from their walk to her location near the drain. Mattie quickly took a look and realized that the ducklings were trapped in the drain, the mother duck could do nothing to help and that they needed to call Animal Control to free the ducklings inside the drain. Mattie with Vicki’s help did just that and were thrilled to report to me later that Animal Control reunited the mother duck with her ducklings and set them free in the Potomac River. Mattie told me this story many times over the course of his short life for it always meant a lot to him that he was instrumental in the rescue operation of the ducklings and their ultimate reunion with their mother duck. Mattie had a big heart and a giving and kind spirit. This episode with the ducklings is very revealing of the values he lived by and which he brought with him into his playtime experiences with us. Not to say, that playtime didn’t have its “rough and ready” moments and that there were never times when, as my own mother would have said, “the party is getting too rough” and for this reason, we needed to slow down the action to bring things under control. But when this happened, we sometimes did a “time-out” or two because we recognized that he was a child, not a saint! So in summary "the game" was a wonderful mix of childhood play that had elements of the physical, mental, emotional and psychological that engaged all our senses in a way that PopPop and Grammie will remember fondly forever. Mattie if you are reading this as we pray you are, I hope I have done justice in depicting your passion for life and your instinct to live life to its fullest especially in the pursuit of your own inner vision as manifested through play for we will always remember you as Captain Mattie, the most creative playmate we ever had!
________________________________________

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "My heart goes out to you today as I am sure do the hearts and thoughts of all those other blog readers. Once again, Mattie came to mind for me today, first thing this morning as one of the cats rang the bell that hangs on our front door. I knew you would be listening for Mattie's chimes as you left the house today on your way to Ann's. I have always been grateful for what I have and yet this year, I feel even more so with regard to my three "F"s...family, friends and freedom. I am so blessed with all of them. I know that your family is incomplete now and will always be, but your group of "friends of the heart" have grown this year. I am glad you got to see Goli this holiday, that is what it is all supposed to be about. Today, know that so many of us are with you in spirit and sending you our strength to help you get through the day with grace and love."

The second message is from my friend and colleague, Nancy. Nancy wrote, "I awoke this morning and thought about the three of you, yes, physically there may not be three at the table or in your everyday activities, but, there will always be the three of you in your hearts. Peter, I just read your thoughts and memories of Mattie from the memorial service. I couldn't do anything else but cry. You are so right when you say to remember that time is a gift and spend it wisely with our loved ones especially our children and grandchildren. They do make our world more complete. I am sorry for your pain and loss and wish you a peaceful day. Be kind to yourself. I am glad that Vicki and you have each other and are there to support and love each other in spite of your pain. Vicki, I miss you ! So many tell of your special qualities and it does resonate with anyone who knows you. You have that quality that draws people to you.The blog is a perfect example of this. Each day that I check in I see how many are still with you. May it bring you some comfort to know that so many are still drawn to your family. Many experience an additional loss after the initial activities of mourning and your commitment to Mattie has kept us all close to you. I remember when we were working on the Conference two years ago and we discussed life cycles. I was dealing with my Mom's decline and you found Barry Jacobs to do the program on Caregivers. You will never know how much that meant to me personally and helped me get through the next month and her death. When we need to be there for a loved one we do forgot the fatigue and stress and move on, most times. When that is removed our physical body lets us know the strain that it has been experiencing. I know that Ann will keep reminding you of this, to take care of yourself and listen wisely to your body. I love hearing about Mattie's chimes sounding often to remind you that you are never alone. What a special bond between the two of you! This will help you to be gentle with yourself when you seem to cry at the drop of a hat. This will help you when getting out of the house seems too difficult. Through your words, I've been reminded of how we are lent our children for a period of time and to give them all the love and care we can. As the two of you know , better than most, that can be taken away in an instant. Sometimes, I find the poems so moving that I can't read them at one sitting. I am grateful to Charlie for these beautiful words as they seem to echo your thoughts and feelings for the day. We all need to know that someone else understands us and can give us space when we need it. I know that Thanksgiving is a holiday when families tell of their gratitude for the year. I am grateful that Mattie has the Mommy and Daddy he had. He was blessed with wonderful parents and family and I am sure would never have handled everything as he did had it not been for your guidance and love. I feel honored to be among a wide circle of friends, family, and colleagues and send you peace and a big MattieBear hug. May it warm you on this day and every day of your life. I am grateful to you for reminding all of us about the importance of reaching out and giving to all around us."

Wednesday, November 25, 2009

Wednesday, November 25, 2009

Tonight's picture was taken last year on Thanksgiving Day. Mattie's school counselor gave him this adorable turkey hat, and frankly when he put it on his head, I thought to myself, there couldn't be a cuter turkey around! As our readers head into Thanksgiving, I wanted to share with you this cute picture and let you know that despite our uncertainty to celebrate holidays, we do want to let you all know how thankful and grateful we are for your continued support. If you do nothing else tomorrow on Thanksgiving, please give thanks for the simpler and more important things in life such as your health and being together with your family. With those two things, anything else is possible!

Poem of the day: A TOUCH OF HEAVEN by Laurie J. Crist

Softly, softly, angels' wings...
Songs of God the cherub sings.
Where peace is like a faded quilt
And love the squares so beautifully built
Wrapped `round each soul who there resides
To warm the hearts where He abides.
So sweet the sound of angel voices,
Hearing them the heart rejoices.
Strain your ears and you might hear it -
Sweet sound that speaks unto your spirit.
Now let your eyes follow the source of that sound;
You will find them drawn heaven-bound.
Look closely now, past clouds and sky.
See God's Kingdom above us high?
Now see the angels, see their faces
Aglow as they bask in the good Lord's graces.
One of these is my son so dear.
He went away; he left us here.
And now my dreams take me to a place
Where souls live on in love and grace.
And I know for all sweet eternity
My son dwells in love and serenity.



My day began in a rather emotional way. When I woke up I went downstairs and sat at our dining room table. While I was sitting there, I was surrounded (as I normally am) by pictures of Mattie. In the past, I may have jumped up or around to avoid what this confrontation would produce, but today I just sat there. As I was sitting there, I began to cry. However, the crying continued for an hour or so. It was almost as if I was reliving our time together, I literally could picture Mattie in the living room, on our rug, building a Lego set, and his determination and his persistence with the process. It seemed all so real as if I had a video tape in my mind that was playing back an all too familiar scene. In addition, throughout the morning, I could hear Mattie's chimes outside twinkling with the wind, as if to signal me, and to let me know he is watching me, and is with me. In those moments, no matter where I am, I do answer the chimes. I tell Mattie that I am listening, I love him, and I miss him too. Needless to say, I love those chimes.

It was a very emotional hour, and during that time, I happened to text message Peter, who could sense I was having a rough start to the day. He validated my feelings and I felt even through our phones we understood each other and the pain. It doesn't take the pain away, but it does help to know that you are not alone in how you are feeling. That someone else can relate to what you are feeling deeply. The crying did not help my headache for sure, and the only reason I pulled myself together was because I promised Ann I would cook something for Thanksgiving tomorrow to bring to her house. Cooking reset my mental state for a brief time period.

Somewhere along the line this morning Ann called me, as she usually does to check in and to make sure I am not balled up somewhere in the corner of a room. It is ironic, that Ann was our Team Mattie coordinator, and despite Mattie being gone, she is still there with me each and every day, no matter how good or bad the day is. I always tell Ann that Mattie wasn't leaving me until he knew there was someone out there with his energy that could be there for Peter and I. Mattie was a good judge of character, and I am grateful that he connected me with Ann.

It is hard to believe that tomorrow is Thanksgiving, and it will be our first major holiday without Mattie. I remember our Thanksgiving last year together, which wasn't a pleasant memory either. The only positive moment that day, was when we watched the Macy's day parade, but after that, the rest of the day Mattie was upset, moody, and did not want to eat or smell food. Nor did he want the rest of us to eat. He also did not want us to talk or make noise. At the time it was frustrating and upsetting, now of course I can put his behavior and feelings into context. He was miserable, feeling miserable, and under the circumstances, I most likely would have behaved the same way or worse. I know tomorrow is a holiday, but it doesn't feel like a holiday to me. In fact it is hard to feel like celebrating anything when a piece of your heart feels like it has been removed.

I visited Sammie's website today (many of you remember Sammie, she lived in California and died in October from Osteosarcoma). Sammie's mom, Chris, expressed how she was feeling in today's posting, and it seems like Chris and I could literally be talking about each other. We both feel physically weak, like we are dragging the weight of the world on our shoulders, and are not energetic to do most activities in our lives. Which brings me back to my statement last night, grief has a very real physical component to it. In addition to dealing with grief, we are also dealing with months on end of living through trauma and in a PICU environment. The combination of these things together creates an aftermath with very real physical consequences. So I wonder why I feel physically poor and have intense headaches, I don't need to look much further than my life's circumstances.

Tonight, we were invited by Goli, our former neighbor who moved to NYC, to visit her at her friend's home in Virginia. It was lovely to reconnect with Goli. Mattie was very fond of Goli, and Mattie also loved Goli's cats. Goli had the only cats I know who could be walked on a leash. When Mattie was well, he would eagerly await to see Goli from his bedroom window walking the cats outside. As soon as he would see her, he would alert me, and then wanted to go out to join her. When Goli moved to New York, this was a loss for Mattie, and he desperately tried to understand why she would want to leave him behind. Got to love the mind of a six year old. While Mattie received treatment twice at Sloan Kettering in New York, he visited with Goli and her husband, John. Mattie enjoyed those visits greatly.

We had a nice time at dinner tonight, and enjoyed getting to know Goli's friend, Susie better. Susie was a delightful host and we had the pleasure of meeting her son, who is applying to colleges now. I always imagined Mattie going to college. So tonight's discussion about schools was hard because this is no longer a part of our future. Just another thing in a long list of things Peter and I have been forced to come to terms with.


I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "First, thank you for posting Peter's "Remembrances" from the November 8 memorial service at Georgetown. It was absolutely beautiful and brought tears to my eyes. I especially appreciated the thoughts about the challenges of being a dad and Mattie's tight bonding to you which we all saw for ourselves during his battle this past year. Who could imagine when this started that you would be without him this holiday season? I will share something from the Haven newsletter that just arrived in my mailbox...when I read it, I said, this is just what Vicki wrote too! "One of the startling relevations we often experience following the death of a loved one is the inexplicable manner in which the world continues to revolve-as if this catastrophic event had not occurred-and it is never more evident than during the holiday season." wrote Judi Taibl. "This is the time to honor your needs....formulate a plan: determine which occasions will have meaning for you this year and respectfully decline others." I think this is so true. Some events may make sense to you and be worth trying while others may just be too much. Do what suits your heart.I hold you gently in my thoughts as I think about lighting a candle in the dark of this season."

The second message is from my sister-in-law, Lisa. Lisa wrote, "Just want to send along our love and best wishes. In conversations with Pete and through the blog, Vicki, you two continue to teach and amaze us with your capacity to share and be honest about pain and loss. So brave to do because so many of us run from those two realities. So many people feel profound loss but hide it for many reasons; I'm so grateful to you both for allowing us to be a part of it. So many ideas and statements in the blog resonate, and yet it feels silly to say "Hey, I'm feeling that, too" or "I was wondering about that." Readers can feel and wonder, but probably from the privilege of a different place. And as Pete's words from the Nov 8 service tell us, and Vicki, as you often remind us, it's all so fleeting and frightening that we must embrace the love and little moments whenever we can. I can't imagine how you're facing the next month; on the one hand, could it possibly be any harder than these past few months? on the other hand... Please know, though, we love you and miss you and wish you some peace on Thanksgiving. At church on Sunday we all thought about gratitude as a concept, and how could I imagine being grateful for anything other than the people who've touched our lives? Mattie embodied love and joy and hope and humor, and I'm grateful he brought those to us. Not for long enough, though."


The third message is from my colleague and friend, Denise. Denise wrote, "I began this morning as I do every morning reading the blog and asking God to support you and Peter and to provide strength to both of you as you go through the day. I read the posting from your former student who asked if you were thinking about returning to teaching. I received an email from Carrie asking if I would come in to do a guest lecture in the spring for her class. I remembered back to when you asked me to come and lecture to your class. I was honored and excited that you asked me to do that and I enjoyed the opportunity to spend that brief time with you. Each time I came, I observed how you interacted with the students and how much they valued you as their professor. Seeing those interactions made me work harder to deliver a lecture that was useful and meaningful to them. You have touched many lives and continue to do so as you write the blog and so generously share your journey with others. Each day, I and many others hold you in our hearts and thoughts. Be gentle and generous to yourself."

Tuesday, November 24, 2009

Tuesday, November 24, 2009 -- Mattie died 11 weeks ago today.

Tonight's picture features Mattie in the drama production at Resurrection Children's Center of "The Three Little Pigs." Ann sent me this picture last night. When I saw this picture it brought a smile to my face because I remember his class production as if it were yesterday. Mattie loved the process and it was beautiful to see Mattie come into his own at preschool. He developed confidence, a sense of humor, and seemed comfortable with himself and with those around him. It was such a gift to see him develop into the charming character that he was during those two years, and I am so thankful I chose a co-op preschool so that I have these memories to pull from.

Poem of the day: To My Little One by Ethel Romig Fuller

I, your guiding star? Ah, no.
You, the light by which I go -The candle with the bright, small wick,
Whereof I am the candlestick.
In His wisdom, One once said,
"By a child you shall be led."(I had no way of knowing how Beautiful this truth, till now.)
O precious little beacon, burn
Along my course, until I learn
In all humility to be
Splendid as your faith in me.


As I look at pictures of Mattie, I can't help but pause and reflect on those moments captured on film. Moments which seemed like they would last forever, or at least that we would have a lifetime together of one special moment after another. I have learned the hard way that nothing in life is guaranteed, especially the life of a child. However, looking at pictures reminds me of the special love Mattie and I shared. Mattie and I were very much alike. We understood each other and we understood people. We had facial expressions for everything, and we could communicate without having to say a word. It is hard enough to say good-bye to your child, but in losing Mattie, I also lost a part of myself. The part that was innocent, fun loving, active, and hopeful. I miss the bond Mattie and I had with each other, a bond that is irreplaceable. His smile and laughter had a way of filling my mind and spirit, and without them, the world seems just a little bit duller and muted.

This afternoon, I met Ann at the mall. I arrived there an hour before I was to meet her. I brought my book with me, and sat on a bench and just read. I am not ready to engage with the world in all reality, but somehow sitting there, I could hear the world around me, yet not have to participate in it if I did not want to. It has been very hard for me to focus my mind on anything, and reading for the most part has been impossible for me. Mostly because I can't concentrate, and my eyes, like the rest of me, are simply tired. It may take me longer to read a book now than it did before, but again, I am in no hurry. Just like with other aspects of my life, I have to accept whatever energy I can devote to things, and not be disappointed in my reactions or with my lack of productivity.

While talking with Ann at lunch today, I realized that I have been working on one of the tasks of grieving, which is accepting the reality of the loss. Intellectually I always understood that Mattie had died, but emotionally I had a hard time accepting that I would never see him again. Accepting the emotional fact that my son died from cancer, that our 13 month battle did not have the results we were hoping and praying for, and of course trying to pick up the pieces of our lives without Mattie is next to impossible. Accepting the reality of not being a parent as well as all the future expectations associated with raising a child are still concepts that on any given day I may have trouble coming to terms with. Being numb for two months enabled me to stay very attached to intellectualizing things and my feelings, and not really and truly feeling them. In a way not feeling anything is safer, but I do realize denying my feelings is not going to bring Mattie back and being able to reflect on his life, helps me have a connection with him in some way. I would still rather have him physically present and I can't tell you the pain within my heart that I feel to know he is no longer with me. Some times the pain almost takes my breath away.

Today was another day in which I physically wasn't feeling well. It is amazing that my physical stamina was so steady and solid throughout Mattie's illness and hospitalizations. But my body, mind, and spirit, did pay the price for this intense stress and heartache. Things that shouldn't be taxing for a person my age, are indeed challenging, and some days just waking up and getting dressed seems like a major accomplishment. It is hard to write this reality much less accept it, since I have always been an active person. But Mattie's death has sucked the life out of me, and I can only hope with time and healing that I can restore aspects of myself.

I would like to share with you the remembrances Peter wrote about Mattie. Peter wrote these reflections for the memorial service that we attended on November 8, at The Georgetown University Hospital. I found them very touching and moving, and I hope you do too.

_________________________

"Remembrances" ~ Peter J. Brown

Matthew Joseph Brown or as anyone who knew him and loved him, called him “Mattie” was born on April 4th, 2002 and died on September 8th, 2009 at the tender age of 7. Mattie had multi-focal Osteosarcoma, a type of bone cancer that required a year of aggressive chemotherapy treatment using things like Doxorubicin, Cisplatin, Methotrexate, Ifosfamide, Etopocide, L-MTP-PE, and suffering through three major surgeries including two to remove his arm and leg bones and implant prostheses, plates and screws as well as a Sternotomy that cut his chest open to remove metastases from his lungs.

As of November 8th, it has been 61 days since we lost Mattie, yet I still remember the morning Mattie was born, it was a Thursday at 12:53am, and I remember greeting Mattie into this world as he squirmed and twisted in the newborn trays in the nursery, looking around, taking everything in about his surroundings.

I remember the endless diaper changes, the feedings at all hours, the spells of vomiting, the bouncing, the kicking of my seat, the whining, the fussing, the difficultness, the sleep deprivation. I also remember the hugs, the kisses, the smiles, the giggles, the “daddy I love yous”, and that inquisitive, bright and infectious look upon his face when he was onto something or experiencing something new and engaging.

I remember being a proud Dad, and the daily and sometimes hourly challenge of living up to what being “someone’s dad” really meant.

I remember throwing the Whiffle ball until it was so dark you could not see it, and biting my lip when things did not go as I thought they should go, but instead went at Mattie’s pace, at Mattie’s speed.

I remember celebrating the “little” things in our lives, since they were “big” things in Mattie’s life.

I remember watching a little boy, so enraptured and in love with his mother, hug her so tightly it almost inflicted physical pain.

I remember the loyalty and fierceness with which a little boy protected and cared for his mother, when he realized there were moments when she needed it more from him, than he needed it from her.

I remember the indescribable and irresistible feeling of being totally loved, totally trusted and totally vulnerable to someone so small, so young and yet so very wise.

I remember Mattie at 3:11am in the morning calling out the words “Daddy I love you… Mommy I love you” two nights before he died …. some of the last coherent and meaningful words he spoke.

I remember the moment Mattie died. It was 7:15am in the morning. It was also the moment when a large part of Vicki and myself died too…..

So in all these remembrances, I want you to remember this.... that time is but an apparition, a fleeting and elusive goal that has no definition but that of what we define for it. So make the most of it, hug your children, tell them you love them, roll on the ground and be silly with them, take the time to make them laugh and connect with them, but most of all, do not take for granted the time that we have on this earth. You never get second chances, you never get to "re-do" that which has already happened, so no regret, and just do, for you will never go wrong.
____________________________


I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, I am glad you got out yesterday even though I am sure it was difficult to be back on the hospital campus without Mattie. Memories are funny things, sometimes they are just out of reach when we want them (like recalling a voice or a face when we definitely want to) and sometimes they simply swamp us like a tidal wave and we are overcome with emotion. It sounds like you had both ends of the spectrum yesterday. Although talking about Mattie was probably difficult for Brandon and Toni, to try to talk without Mattie in the conversation would have been more difficult and untruthful and the conversation probably moved everyone a tiny step toward healing. The orchid sent by Miki sounds lovely and it must help to know that you and Mattie remain in everyone's thoughts. May today you find some measure of comfort in knowing that so many of us continue to pray and think about you and Peter daily (hourly).

The second message is from Mattie's oncologist and our friend, Dr. Kristen Snyder. Kristen writes to us every Tuesday to acknowledge Mattie's day of passing. Kristen wrote, "Today is Tuesday...and a Tuesday that precedes Thanksgiving. I know this Thanksgiving will be a Thanksgiving you never dreamed you would experience. Keep in your heart, all day long, all the lives that Mattie has touched. Know that all of us are thankful for him, for his gifts, for his tenacity, for his courage, for his impression left on our hearts. It's a very palpable and tangible impression. Know that we are thankful too, for the two of you. Sending you warm thoughts today and always."

Monday, November 23, 2009

Monday, November 23, 2009

Tonight's picture was taken in August 2008 in the Lombardi Clinic. Mattie and I took on the project of painting a ceiling tile in the Clinic. Jenny and Jessie (Mattie's art therapists) helped trace the Scooby Doo characters on this tile for us, and Mattie and I joined forces to paint it. Once it was completed, it was put back in the ceiling of one of the patient rooms. Mattie always liked that room in Clinic, because it had "our" painting in it. Mattie and I spent many days in clinic creating, and it is hard to believe I don't have him with me anymore to do these things with. It isn't only the activities I miss, but I miss his presence, his energy, his love, and simply being with him.

Poem of the day: Sorrow by Abraham Lincoln


In this sad world of ours, sorrow comes to all, and it often comes with bitter agony.
Perfect relief is not possible,
except with time.
You cannot now believe that you will ever feel better.
But this is not true.
You are sure to be happy again.
Knowing this,
truly believing it,
will make you less miserable now.
I have had enough experience to make this statement.

You may remember that a few days ago, I received a picture of Mattie from his kindergarten friend, which I posted on the blog. This picture remains in my mind, because to me it reminded me of what Mattie's eyes looked like. This morning before I awoke and opened my eyes, as I was coming to consciousness, in my head I saw Mattie's eyes. They were as large as life, so much so, that this mental picture jolted me awake. I turned to my edge of the bed, where Mattie would come and greet me some mornings, but unlike those mornings, there was no Mattie looking back at me. So my day began with the beauty of Mattie eyes which was an unusual occurrence for me. But then just like every morning since Mattie's death, I am greeted with the same bleak reality of my situation.

I went to Georgetown University Hospital today to have lunch with Brandon (Mattie's big buddy) and Brandon's mom, Toni. Brandon had an appointment at Georgetown, and it was nice of Toni to invite me to lunch and reconnect. I did not have to go in the hospital or the Clinic today, but somehow when I drove onto the campus, and passed the parking lot for people with disabilities, I was flooded with memories of Mattie. I remember parking there many times with Mattie and pushing his wheelchair around the campus. In a way I could almost picture us doing our usual routine, and even glanced over to the windows of the physical therapy clinic. Not sure what I was expecting to see through those windows. But it is a very difficult and heartbreaking feeling to walk the path that Mattie was on only months ago. There are times when I reflect on how I would try to encourage him to participate in physical therapy, and yet now knowing how sick Mattie really was, I am in amazement that he put up with Anna and myself. He always gave it his best, even up until the week I learned that the cancer spread throughout his body. How does someone who is such a fighter, who is so young and vibrant, die? I ask myself this question everyday, and still have no answers.

I had a very nice lunch with Brandon and Toni. We chatted about how Brandon is doing and about the fact that he is taking college classes now. Of course we reflected on Mattie, and what a loss we all feel. Remember that Mattie considered Brandon one of his "best friends." Though Brandon is 18 and Mattie was only 7, they had a way of providing a special need and gift to one another. Toni and Brandon gave me a special gift today. They gave me a beautiful garden angel, because they know how much Mattie loved being outside and in the garden. Since Mattie's death I wanted to actually get an angel as a remembrance of him, and therefore receiving this gift was very meaningful to me and symbolic of my little angel that I lost. I am sure it is hard for Brandon on some level to see me, and for us to talk about Mattie, but through all of this, we are trying to heal together.

When I arrived home this afternoon, I had a flower delivery. I opened the box, and inside was a beautiful orchid plant. Miki, one of Mattie's wonderful HEM/ONC nurses, sent me an orchid to let me know she was thinking of me and she knew that the holidays were going to be very difficult for Peter and I without Mattie. Miki wrote a beautiful note with the orchid, and the sentiments I will always cherish. She wrote, " Vicki, I would like to let you know that I am still reading your blog everyday and wishing you and Peter a nice day everyday. I know that this holiday season may be very difficult one for you. But I'm hoping that this little orchid flower will light up your table in some way through this season.... even in a very small way. Thinking of you." This orchid made me smile, because it captures the delicate and fragile time we had at the Hospital through Mattie's illness and the beautiful people we met through this journey. Our HEM/ONC nurses remain forever within my heart and mind, and I guess I am deeply touched that they feel the same way about us. That is a gift of grand proportion.

As the day continued on, however, I spent it dealing with a host of emotions, and with bouts of tears. I have been very good at suppressing these tears for quite some time now, that I find when they do occur, I just now let them happen.

I end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "I was really excited to hear about the progress you are making on the foundation and like many others I am looking forward to the launch. The logo sounds just perfect; it will appeal to lots of people while having special meaning for those who have been involved with Mattie/the blog/you and Peter personally. I’m excited about helping/participating in fund raising for this worthwhile cause as I am sure many others are as well. I’ve seen the video for “I’ve had my moments” and it gave me chills the first time I watched it. So many people walk so close to the edge; I am glad your angels are here to help you keep your distance. I know this is a very difficult time of year to be grieving (not that anytime is easy) but I think this is especially hard given how many “children/family’ centered holidays there are. I hope you can steer your way through them; know that you are in the thoughts and prayers of your friends/family and blog readers as we go forward from here."

In the second message, I am sharing a portion of an e-mail from my former student, Theresa. Theresa wrote, "Do you have any thoughts on going back to teaching? I know it might not be something you are thinking about right now but you really should think about it. You truly impacted my life and I know you have impacted everyone you have come in contact with. You are truly Mattie's mother."

The third message is from Lesley, a friend of my sister-in-law's. I have gotten to know Lesley throughout this year, and then had the opportunity to meet her in person when she came down from Boston to attend Mattie's funeral. Lesley wrote, "As we enter the holidays, you are never far from my mind. To wish you peace is too simplistic and condescending, but I do wish you the warmth of the friendship that surrounds you. A few days ago someone shared with you that they felt that you are a talented writer..... I would agree. You have given us raw insight into love and loss. Grief is not always about resiliency but truly feeling the process. This Thanksgiving, I am grateful to you. I no longer mask emotions but let them sit, stir and process for a while, and I have learned that is okay. Your blog has taught so many to live in the moment, love deeply, honestly, and never have regrets. Mattie will never be forgotten even with strangers....I promise."

Sunday, November 22, 2009

Sunday, November 22, 2009

Peter found this picture last night as he was going through my electronic albums. It was taken in August 2008, when Mattie was admitted to the hospital for his first chemo treatment. We were in the hallway of the PICU, where we were introduced to model magic for the first time. In August 2008, the hospital had NO childlife playroom, it was built months later. So all art projects took place in the hallway. Mattie and I created masks out of model magic, and as no surprise to many of my readers, I still have these masks today. They sit in my kitchen!
Poem of the day: Heaven's Playground by Suzanne McClendon

Precious angel sent to earth,
Did they tell you of your worth?
More than diamonds, rubies or gold,
Only you do I want to hold.
So perfect your beauty as I look into your eyes
That gentle reflection of angels in the skies.
Each day you grew inside me, so big and so strong,
But your time here with me was not to be long.
Oh how my heart aches as I have to say goodbye,
As I let you go back to play in the sky.


Tonight I am not feeling well as I am suffering from another migraine headache. So I will do my best to highlight some aspects of our day. Peter and I have been working hard this weekend on designing letterhead for Mattie's Foundation. We have finally developed the final design today. In addition, Peter brainstormed a logo for the Foundation, and he showed it to me tonight. I really liked it because it captures several key elements, the acronym for the Foundation (MMCF - Mattie Miracle Cancer Foundation), and the sun (one of Mattie's favorite symbols). I noticed the sun Peter created, which is embedded in the logo, has 7 rays coming from it, and I immediately realized that each beam or ray of light represented one of the seven years Mattie was on this earth. Needless to say, this logo caught my attention because it captures the vibrancy of Mattie's spirit.

Peter also shared with me that he heard a song on the radio that stopped him in his tracks. Since he was listening to my radio station, he asked me if I had heard or knew the song. I had heard it before, but decided since it made such an impact on Peter, that I would look it up and we would watch the video of it together. I posted it below, so you could see it as well, if you are interested. The song is entitled, "I had my moments." In essence, the song depicts a young man who clearly is at the crossroads of his life. He is going through a difficult time, and is headed up to a bridge, with the thoughts of perhaps ending his life. However, in the midst of this journey, he runs across another man, who appears homeless. This kind soul talks to the young man and by the time he finishes with him, the young man sees that he has indeed had good moments in his life. Moments that showed him that he did have the courage and strength to rise to the challenge and accomplish things he never thought he could do. By the end of the song, you see the young man throwing, most likely, a suicide note over the bridge, and then walking away and not jumping. There is something about this song that reminds me of the movie "It's a wonderful life." Similar to the song, in the movie the character, George Bailey, is at the crossroads of his life and wonders if his life is worth living. His guardian angel, Clarence, helps George see that without his presence in the world, so many people would be negatively affected. I think the power of both the movie and the song, "I had my moments," is it highlights the importance of key people in our lives. People whose presence can help you see beauty even through the incredible pain, and in our case, the pain of losing Mattie. Peter and I have each other, which is vital to surviving this tragedy. But I would be remiss if I did not acknowledge people like Ann (my angel of hope) and Karen (my lifetime friend) who walk each day with me (sometime hour by hour) and of course our readers who continue to check in with us. I think this is a powerful song because it reminds all of us that the human connections we make with others on a daily basis DO matter and can have a profound impact on another person's life.

http://www.youtube.com/watch?v=HQ3-PHktE34


I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Bless Peter for his thoughtfulness and understanding; I can almost see those flowers standing amidst the legos and other items Mattie created in his time here. It sounds like yesterday was a day when you got a break from the overwhelming grief for a bit. And although you were joking about going to the serenity room for a couple of hours a week; it would be helpful if you could somehow find space in your life for that serenity for just a couple of hours per week. I agree that your book choice is interesting; some people give thought to their legacy early on while others don't seem to care. Sometimes, unfortunately, we are here for only a brief time and it is up to the ones who love us to establish our legacy on our behalf. Mattie certainly established his in the hearts and minds of those who met him and you made the connection for those of us who did not really have the opportunity to meet him by establishing the blog. For today, I hope you can find a few minutes of that serenity to help get you through the more difficult moments."