Saturday, December 19, 2009

Saturday, December 19, 2009

Tonight's picture features Mattie in December 2007, standing in front of our Nation's Christmas Tree. This tree is always displayed in front of the White House. The Nation's tree is the beautiful and tall tree behind Mattie, however, you may notice that there is a smaller tree immediately behind Mattie. In fact there are 50 smaller trees, one for each of our 50 States, that surround the Nation's tree. Each of these 50 trees is decorated with ornaments from the State it represents. The night we headed to see the tree was absolutely frigid, yet despite that, Mattie enjoyed this adventure and seeing the lights.

Poem of the day: Sorrow by Charlie Brown

Sorrow is

A deep blue ocean

With waves of grief

That swamp me

Whenever I think

I am safe.

Then it comes,

Knocks me down

And leaves me breathless

With the pain of memories

Large and small.

If you want to help

Just offer me

The shelter of your Friendship

And a place to shed my tears.

Grief can and does knock me down at times, and today was one of those days. As Charlie's poem reflects, grief can leave you breathless, filled with memories, and at times it is hard to imagine ever feeling better. I was on the Internet today, and by accident, I landed on some promotion for Veggie Tales. Mattie loved this video series, and in fact, toward the end of his life, he couldn't fall asleep at night without me next to him and watching a Veggie Tales movie. Those nights seemed endless to me, however, now I long for those nights, because that would mean Mattie were still alive. It is amazing how a talking cucumber and tomato (characters featured in Veggie Tales) at one time made me smile, and now only bring me intense sadness.

I was scheduled to see the Nutcracker today with Ann and her family. However, our area was hit with a blizzard, and so far we have over 15 inches of snow, and it is STILL snowing. The District of Columbia, is experiencing a snow emergency, and the city will be digging out for days. The city can hardly handle a few inches of snow, but over a foot puts the entire area in a complete standstill. Peter and I tried to get to Ann today to pick her and the kids up to bring them to the city (where the Nutcracker was being performed). Peter has a four wheel drive vehicle, and thankfully has great skills driving in the snow. As we were driving, we could see that it really was too dangerous to be out and about. We saw a snow plow get stuck in the snow, and several cars spin off the road. We managed to make it to Ann's house, and then decided no performance was worth the risk to bring the kids out in a car today. We warmed up at Ann's house, I had hot tea, and chatted, but then we ventured back home.

We took some pictures of the snow. The picture on the right, shows the snow outside Ann's home. This is what the streets looked like today. The picture on the left, is of our deck. If you look closely, above our outdoor closet, Peter placed Mattie's Lightning McQueen ruler in the snow. You can clearly see the snow measures over a foot!

Left: A picture of the Lincoln Memorial in the distance. It was a white out today, so the Memorial almost blends into the background of the WHITE day.

I spent a good portion of the afternoon working on Mattie Miracle Foundation paperwork. While on the computer, Peter and I commented on how quiet it was outside. We live in the heart of the city, and ALWAYS hear both car and airplane traffic. Today, there was nothing to be heard. It was that peaceful.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am glad to hear that you and Peter continue to get out and meet with friends. It really is important not to let grief isolate you from your friends. It sounds as if the visit to the Georgetown campus was a good one; you and Mattie are firmly in the memories of all who interacted with you there and it is lovely that many of them were able to come down and visit with you. Trying to return to the PICU would be difficult for anyone and certainly should not be rushed, if in fact, you really feel the need to return to that particular place at all. As always follow your instincts, don't push things or yourself, and let people help you where they can. Friday night was the last night of Hanukkah and with all the candles lit (we add one each night) I hope that just as we add to the lights so may your sorrow burden be lightened a little each day. You remain in my thoughts."

Friday, December 18, 2009

Friday, December 18, 2009

Tonight's picture, like last night's, was taken in December 2007 at the US Botanical Gardens in Washington, DC. Behind Mattie you can see a miniature version of the US Capitol. This structure is made completely from plant and tree parts. Visiting the gardens was something Mattie enjoyed doing during the holiday season. As we have one more week until Christmas, my goal is to share a Christmas themed photo of Mattie with our readers each night.

Poem of the day: What a Grieving Mother Really Thinks by Kelly Cummings

Hello, Old Friend,

Oh, yes, you know

I lost my child a while ago.

No, no please

Don’t look away

And change the subject

It’s okay.

You see, at first I couldn’t feel,

It took so long, but now it’s real.

I hurt so much inside you see

I need to talk,

Come sit with me?

You see, I was numb for so very long,

And people said, “My, she is so strong.”

They did not know I couldn’t feel,

My broken heart made all unreal.

But then one day, as I awoke

I clutched my chest, began to choke,

Such a scream, such a wail,

Broke from me…My child! My child!

The horror of reality.

But everyone has moved on, you see,

everyone except for me.

Now, when I need friends most of all,

Between us there now stands a wall.

My pain is more than they can bear,

When I mention my child,

I see their blank stare.

“But I thought you were over it,”

Their eyes seem to say,

No, no, I can’t listen to this, not today.

So I smile and pretend, and say, “Oh, I’m okay.”

But inside I am crying, as I turn away.

And so my old friend, I shall paint on a smile,

As I have from the start,

You never knowing all the while,

All I’ve just said to you in my heart.

I was e-mailing my friend and colleague, Nancy, last night. She mentioned in her e-mail that she is so impressed with our support system. She reflected on the fact that in many cases, most friends move on weeks after a loss, expecting that things will return to normal for the bereaved. In my case, I am fortune that people haven't "moved on" or have expected me to "move on" either. I am not sure why we are so lucky, but I am very grateful. Maybe because I write each day about our thoughts and feelings, maybe because Mattie's life touched a corner of your heart, making it impossible to forget him or our situation, or perhaps for those of you who have lost someone dear in your lives, you can relate on a very real and heartfelt level to what I am expressing. In any case, I wanted to make sure our readers understood that the sentiments reflected in tonight's poem, do not necessarily speak to how I am feeling about the support I am receiving. I value the e-mails and cards, and I am a blessed person to have Ann and Karen in my life. These women e-mail and text message me at all hours of the day. In fact, after being SO angry from the support group last night, I was text messaging Ann until 1am. This may sound cute, this may sound touching, but the messages I receive from Ann and Karen most days help me get out of bed and function. These messages are vital to my day to day existence. It is important to understand that I may look okay and put together, but that is not representative of how I am actually feeling!

For both Peter and I, we constantly have people who come up to us and give us feedback about how good we look. I am not sure how others expect us to physically present ourselves. However, because I take a shower, put on clean clothes, and wear makeup, I assure you this isn't an indication of how I am internally feeling. Keep in mind that I tried, with the emphasis of TRIED, to look physically put together each day that I lived in the PICU. Therefore, what I am getting at is, when interacting with someone who is grieving, don't judge us by our cover. Also most likely if we say we are fine, we aren't really fine at all! Tonight's poem evoked these feelings within me, and I felt the need to share them.

I met Brandon (Mattie's big buddy) and his mom, Toni, at the Georgetown University Hospital today for lunch. Coming on campus wasn't as traumatic as the first visit. Each successive time it becomes easier, yet I have not made it up to the PICU floor. I know I am not ready for that, yet I would love to see all the nurses. I had a wonderful lunch with Brandon and Toni. I am happy to report that Brandon has NO EVIDENCE OF DISEASE, and he is one year out of treatment, and just completed his first semester of college. Brandon holds a special place in my heart because Mattie gravitated to him and considered him his "best friend" at Georgetown. While at lunch, several of our Georgetown friends stopped by to say hello. I first met up with Ashley while ordering our food. Ashley is a PICU nurse, and originally from Massachusetts. She is a Boston College graduate as well, and between that and the Red Sox, my family always had a lot to talk to her about. She is as beautiful as she is competent, and Mattie really liked Ashley. One night, and I use the term night loosely, maybe 1am, Mattie pressed his call button in his PICU room. On the intercom, he specifically asked for Ashley to come to his room. When she arrived, she did not even make it into the room, because Mattie had a remote controlled jeep that greeted her in the hallway. Attached to the jeep was a blown up rubber glove, which looked like a turkey. The message written on the rubber turkey read, "I love you Ashley." Needless to say, Ashley's heart melted, and somehow this inspired Mattie to make more turkey balloons, and then he invited all the nurses into his room for a 2am special visit. I took a picture of Mattie on the left, surrounded by his turkey balloons that night! I remember that night like it was yesterday, especially the energy Mattie produced and invoked in others. It was lovely to see Ashley, and to reconnect with her. We reflected on the turkey balloon story that I am sharing with you, and it brought a smile to our faces.

After seeing Ashley, I then was greeted by Denise, Mattie's social worker. As the afternoon went by, Linda (Mattie's incredible childlife specialist) and Jenny (Mattie's amazing art therapist) stopped by to see me. Denise told them I was on campus. As my readers know, Linda and Jenny mean a great deal to me. These women kept me sane, during some very insane, stressful, and mind numbing days in the hospital. Mattie loved them, but so do we. I shall never forget their kindness, skills, and love for my family. Linda contacted several HEM/ONC nurses and let them know I was on campus, and within minutes, I met up with some incredible ladies. I got to see Katie (AKA Dorothy - named for her beautiful red shoes which Mattie loved so much), CR (who is now back from her peace corp trip!), Catherine (our case manager), Miki (a fabulous HEM/ONC nurse who reads Mattie's blog each day, and recently sent me a beautiful orchid plant), and Tricia (an amazing HEM/ONC nurse, who helped me in incredible ways).

Sometimes I wonder if these nurses think about us in the same way we think about them. I answered my own question today. The answer is a resounding YES! These are remarkable women, and it is clear that Mattie will never be forgotten by them. In fact, Catherine, Mattie's case manager told me today, that she can't walk on the PICU floor without hearing Mattie's voice and feeling his presence. That made me smile. Tricia and Miki told me that not a day goes by where they are not thinking of me, and praying that we get through this. In fact, Tricia told me she had to take a break from reading the blog for a while, because Mattie touched and impacted her life that deeply. Tricia started crying, and I was right along with her. Tricia saw Mattie during some of his worst and best times, but in the end he did love her, and he told her as much. I will never forget that day, Mattie came back to the PICU after playing in the childlife room for an hour or so. As I was wheeling him back to his room, Mattie screamed out for Tricia through the PICU hallway. Tricia came running over, and none of us knew what he was going to say. After he got her attention, he then said to her, "you know I love you!" I don't think any of us forgot that special moment, especially Tricia.

Tricia has three wonderful children, who I got to know about from living in the PICU. However, like most full time moms, there is rarely time to go out to dinner with just your husband. Tricia was saying that when they do have a night out, they sometimes feel lost because they are not dealing with issues related to their children. This is a feeling ANY parent can relate to, and this feeling really doesn't need any further explanation. Somehow though I began talking without realizing it. I told everyone that this is now the feeling Peter and I have every minute of every day. This feeling of being lost and directionless. Except for us it doesn't last a couple of hours while we go out to dinner, instead it is for a lifetime. Mattie filled our world and our time. As a couple we united forces to raise and invest in Mattie. Now that Mattie is gone, we are struggling to redefine ourselves individually and as a couple. I could clearly see that my analogy got my point across quite effectively.

As I mentioned earlier this week, Peter and I actually have a social calendar. We have gone out almost every night this week. Tonight, we met up with friends of Peter's. I had never gone out to dinner before with John and Jeanine, but they picked a wonderful restaurant in DC called Beck Brasserie, and we had a nice time chatting and sharing a memorable food experience.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Much of what I've read about grief sounds like what you are describing. The closing off from celebrations, the intensity of some feelings and the suppression or dulling of others, all sound like what I've read. Elizabeth Edwards writes, how for many days after her son Wade died she tried to find a way to make it not so, to have him be alive. She writes that she finally realized that the only way to survive was to go on and to accept that there was no way to go back (to before his death) no matter how much she wished to do so. It took her a couple of years to realize that her world had changed and she could not change it back and she had to go on no matter how much she wanted it to be different. I think that is true, but that it takes time to get to that point. It doesn't make the loss any less; nothing could make Mattie's loss any less, but there comes a point when you realize you have to go on without him since the power to change death back to life is not ours. As for the group, give it a chance and remember that you are not there to be a counselor, you are there as a grieving parent and anger is a grieving emotion. At some point you will be further along the path than you are now and perhaps you can help someone else but right now, you can't and you have to accept that for what it is. Hopefully, one or more people or the facilitators from the group can support you where you are now and that goes for Peter as well. Even more today than usual, I hold you gently in my thoughts and I will dedicate the peace of my practice to you."

Thursday, December 17, 2009

Thursday, December 17 2009

Tonight's picture was taken in December 2007. One of our family traditions, was to take Mattie to the US Botanical Gardens (which is an indoor garden, that houses amazing plants and foliage from around the world) around Christmas time. The US Botanical gardens are decorated each holiday season in a very remarkable manner, particularly memorable is the use of plant pieces that are put together to create miniature sized buildings and even a town with a working train. If you look closely behind Mattie, you can see a miniature building in front of a Christmas tree. This structure is made completely of plant and tree parts, and Mattie and I would always examine the pieces and try to figure out what type of plant or tree these parts actually came from.

Poem of the day: My Little Man by Donna Rausch

Please forgive me for not speaking,
but I know you'll understand,
God came into my life and took "My Little Man"
The smiling face that greets me when he comes
home each day from school,
The one who gives me great big hugs and says
"Mom, I love you"
The one who I depend on to get me through the day,
When things get rough and sometimes,
blue skies seem so grey.
He was just a little tot,
so happy and carefree,
I find myself keep asking God
"Why did you take my son from me?"
He was my special little angel,
you couldn't possibly need more,
Now I sit here just waiting for him to walk through the door.
The house is "oh, so quiet" for he gave it so much joy,
God please send "My (son)" back to me,
he was just a little boy.
They say he's in a better place and surely is at rest,
The only comfort that I have is I know you only pick "the best"
So please take care of "My (son)" and love him like I do,
because if he can't be with me,
then I'm thankful he's with you.



Tonight's poem resonates with me because I always called Mattie, "my little man." It may be true that God picks "the best" to take back with him to heaven at an early age, however, I must admit I am not thankful Mattie is with God. To me he belongs with me. It is my constant daily struggle with God, to understand something that is absolutely incomprehensible!

Though I am certainly sleeping better than I have been since September 2009, I still have nights where sleeping is challenging. Last night was one of those nights. I was able to get to sleep, but I was unable to stay asleep. I felt as if I was up for most of the night, and therefore, this impacted my mood throughout the day.

I met up with Ann and we went to the mall together. It is ironic, I am surrounded by all sorts of holiday displays at the mall, yet to me, I am almost oblivious to all of this around me. Yes Christmas is a holiday of great importance in Christianity, yet to me, Christmas is also a state of mind. Though I appreciate the religious significance of Christmas, after all, how could I not? A couple gave birth to a very special baby boy, who would eventually be taken from them because his mission was to die, return to God, and teach us all a lesson about love, redemption, and eternal life. I deeply understand, in a very profound way, this amazing sacrifice Mary made to give up her only son. All my life I have heard this story each Christmas, but for some reason, this story pierces my heart like it never did before.

This evening Peter and I went to the first support group offered at Georgetown University Hospital for parents who lost a child to cancer. Three other families signed up for this group, but one family was unable to attend tonight. One family we already knew, and we had the opportunity to meet the other family tonight. The group was co-facilitated by Mary, the lead social worker of the Lombardi Pediatric Cancer Center, and Sharon, the Chaplain who works with all Lombardi Cancer families. In fact, Sharon was the chaplain who was in Mattie's PICU room with us for hours on the day Mattie died. Peter and I entered the group with no expectations. Each of us got to go around and tell our story, and of course we had a chance to dialogue with one another after sharing stories. One couple lost their son over two years ago. What startled me about this is that their grief is still very fresh, real, and raw even today. Which confirms my thoughts about the cliche, time heals all wounds. In fact, I believe some wounds will never heal, we may learn to live with them, but the loss of a child is not something you get over and I don't care how much time lapses by.

I had many emotions going through my mind while sitting at the meeting. Everyone around me was crying, yet I did not cry. Naturally that made me take notice, but then I quickly realized we are in different places. While they were crying, I was simply angry and hostile. I explained to the group that on any given day I am either angry or depressed. I realize that both of these families are further along in their grieving process than I am, and I imagine with time, perhaps I will be crying intensely. I certainly have my moments now, but for the most part, I am very aware of my anger and depression.

The group talked about the difference between how husbands and wives process the loss of a child. I was beginning to see that there were value statements being placed on things, such as this way to grieve is "good" and this way is "bad." I understand the sentiments behind that feeling, but I felt the need to speak up and say that there isn't a right or wrong way to grieve. We all do it in different ways, and we have to respect that. What works for me, I know doesn't work for Peter and vice verse. I also said that for the first time in our lives as a couple we just can't help and support each other. It doesn't speak to the quality of our marriage, but to the depths of losing a child. All the members of the group agreed with me, because it is impossible to support your spouse when you are immersed and drowning in the same issue.

Nonetheless, as the group continued on, I could feel I was becoming more angry by the minute. I tried to understand what was making me angry. Initially I was angry that I had to hear their stories. I know that sounds ridiculous, because that is what happens in a support group, but I am dealing with so much pain over Mattie's death, that I really did not want to invest in hearing about someone else's story or pain. I was taken aback by my feelings, because I perceived them as selfish, but then I realized I am not being selfish, I am protecting myself. I can hardly deal with my story, much less take on two more. Would I attend another meeting in the New Year? Probably, I don't think I can dismiss the group this quickly, without truly giving it a chance.

Peter and I continue to be amazed my how many "fans" the Mattie Miracle Cancer Foundation has on Facebook. Tonight, I was honored that Tricia's (one of our favorite HEM/ONC nurses) daughter became a fan. Tricia's daughter has some wonderful pictures from Mattie's March in May 2009 on her facebook page. Peter printed out one of the pictures for me tonight. It is a picture of Tricia and Mattie together at the walk. Mattie had a big smile on his face, and seemed so happy. Looking at the picture, it is hard to accept that only four months later, Mattie died.



I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Grief is a full time emotional job. I think you are doing well at honoring your feelings and your needs. It is good that you and Peter are getting out and reinforcing your connections to friends and those you care about; that is what makes life worth living. The pins sound perfect for the foundation; maybe you can post a picture and let people know if they can purchase one to honor Mattie and donate to the foundation. Tonight is the seventh night of Hanukkah and as always you will be in my heart and prayers as I light the candles tonight."


The second message is from my friend and colleague, Nancy. Nancy wrote, "When I woke this morning, the following words were running through my head:

Although it's been some time since I have written
I carry Mattie, Peter, and you in my heart.
Your week is measured briefly,
From Tuesday, it does start.
You're right, in that this day,
Will never be the same.
Yet, as I read your entries
One theme that does remain,
Is Mattie will never be far away from you
In spirit and in love.
His wind chimes, his song.
His many gifts clearly
Shown in many ways.
His body is at peace
But his memory will never fade.

December 16, 2009

Wednesday, December 16, 2009

Tonight's picture was taken by my mom in December 2007. This was the last Christmas we spent with Mattie before he was diagnosed with cancer. Little did we know how lucky we were sitting by the tree that year. In 2007, we had no idea what Osteosarcoma was, much less how it could ravage a child and his family. If there is anything you can learn from Mattie's story this holiday season, it should be to appreciate your health and those around you. Nothing in life is guaranteed, and it is important to appreciate the time you have with your children during the moment. Because if you wait for the right time to connect, bond, do something special, that time may never come, and when it does, it could be too late.


Poem of the day: Mother and Child by Kelly Cummings

I was there.
I sat with you
the vigil through day
sand 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.

I spent part of the day with Ann today. We ran around doing chores together and chatting. Trying to work through Mattie's death is a full time endeavor for me, and because it is all consuming at times, I periodically forget that "my angel of hope," Ann, is also dealing with her own grief as well. After all, she lost her father five weeks after Mattie's death, and also lost her brother to cancer only two years ago. Perhaps this is one of the many reasons we understand each other so well. This morning, I had the opportunity to read an article about loneliness during the holiday season, published by the American Counseling Association. The article discussed the pervasive sense of isolation and loneliness many people feel during the holidays. The article reflected on the importance of "reviving a person’s hope" and through this revitalization one can gain a sense of worthiness to have joy and happiness back in life. In many ways, I consider myself fortunate to have Ann in my life, because she is doing just that, trying to revive my hope and spirit to live and reconnect with others, which is no easy task.

This evening Peter went to the PICU at Georgetown University Hospital to donate a printer to the Childlife playroom on behalf of Mattie's memory and our Foundation. I have yet to visit the PICU since Mattie's death, and I am not sure what that reunion will be like for me, but I do know that Peter had a hard time revisiting this space today. After all, how could he not? It is like visiting home, but the crucial part is missing, your child. Mattie breathed life into the PICU, and his energy was contagious. Somehow I imagine his presence is still there in spirit.

Peter designed lapel pins, in the shape of a ribbon. The ribbon pin is made out of metal and it is orange, which is one of Mattie's favorite colors. On one side of the ribbon it reads "Mattie Miracle" and on the other side of the ribbon loop it reads "MMCF." I was thrilled to see the shipment of pins arrive today, and have already put one on my coat. This evening, we had the wonderful opportunity to have dinner with Junko and Tad. Many of my faithful blog readers know that Junko is the SSSAS mom and friend who would come to visit me in the PICU, and bring me a wonderful lunch and then give me a massage. Both Junko and Tad spoiled us this year and when Tad arrived at dinner tonight and he was wearing a beautiful red tie that read, "Realize a Mattie Miracle." Tad gave Peter the same tie at Mattie's celebration of life reception. It was a special gift to receive this tie on October 10, 2009, and it was even more special to see Tad wearing his tie tonight to dinner. We should never forget why we created the Foundation, and the tie sums it up perfectly.... we all want to "realize a Mattie Miracle" so that no other child or family has to live this nightmare.


Both Tad and Peter grew up in Massachusetts. So I kidded them, or picked on them for their love and admiration of the Boston Red Sox. Frankly understanding the loyalty, commitment, and passion of a Red Sox fan could be a fantastic case study. I have never seen such devotion, and as soon as one Red Sox fan spots another fan, there seems to be an instant connection and bonding. Amazing! Any case, while teasing Peter, I observed him laughing. I commented to him after dinner, while walking home, that there was something about his laugh tonight, or his facial expression that reminded me of when I met him back in college. Needless to say, it was nice to see him smile. Junko and Tad's friendships are another gift that Mattie gave to us, and it was lovely to get together midweek and go out to dinner. Something we would rarely, if ever, do prior to Mattie's cancer.

Peter and I commented to each other that we actually have a social calendar now. We went out to dinner last night with Kristen, Mattie's doctor, and tonight with our friends. I can't remember that last time I went out to dinner during the work week. Through Mattie's death, I am learning to stop and slow down, and to appreciate what really matters in life. Connections with others.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I can only imagine how difficult it must be to open a card and see wishes for a Merry Christmas and/or a Happy New Year to you, Peter and Mattie. And then to have to decide how to deal with telling people that Mattie is no longer here with us. What a heartrending task to have in front of you. Although it makes it less personal, perhaps typing up what you want to tell people and then printing it off to put into a note card (not a Christmas card) might be a possible way to do this. I ended up doing something like this when I was contacted by distant relatives and friends of my mother's when she died. Although we did our best to let people know, we missed quite a few and they sent cards to her at Rosh Hashana (Jewish New Year) that I felt required a response. I am sure that you can get other suggestions if this one doesn't suit your needs. Just know that I am holding you gently in my heart as you work your way through this season."

Tuesday, December 15, 2009

Tuesday, December 15, 2009 - Mattie died 14 weeks ago today!

Tonight's picture continues last night's theme. In last night's picture it featured Mattie on Roosevelt Island collecting caterpillars. As you can see in this picture, Mattie is holding up a jar filled with caterpillars, oak leaves, and branches. He would watch this jar like a hawk each day to see what, if any, changes took place with the caterpillars. Mattie collected caterpillars three years in a row, and each of the caterpillars he placed in the jar transformed into a tent moth. This brought him great joy!

Poem of the day: REMEMBER ME

To the living I am gone
To the sorrowful, I will never return
To the angry, I was cheated.
But to the happy, I am at peace
And to the faithful, I have never left.
I cannot speak, but I can listen
I cannot be seen, but I can be heard.
So, as you stand upon a shore,
Gazing at a beautiful sea
Remember me.
As you look in awe at a mighty forest
And its grand majesty
Remember me.
Remember me in your heart,
Your thoughts and your memories
Of the times we cried,
The times we fought,
The times we laughed
For if you always think of me,
I will never be gone from your side.

Mattie died 14 weeks ago today. In fact, I may never look at a Tuesday the same way again. Each Tuesday only marks yet another week that Mattie is no longer in our lives. Tonight's poem, seems very appropriate for the tone of our day..... we remember Mattie each and every day he is gone, and somehow this feeling of loss is heightened for me on Tuesdays.

Ann and I met for lunch today and then she took me back to the spa that has this peaceful serenity room that I like so much. Sitting in this room is a special gift, because I work very hard for the time I am in there to relax and read. I am still working on reading the same book I told you about weeks ago, "The Christmas List." It seems like I only pick up this book each time I go to the spa. It is a wonderful story about a man who reads his obituary in a newspaper, but of course the catch is he never died. The newspaper reported his death prematurely. In any case, the story is about this man's journey of self discovery. Through his reported death, he learns how people really feel about him, which is that they despise him. This news makes him deeply upset, and the remainder of the book is dedicated to his transformation, making amends with those he hurt in his life (especially his wife who is dying of cancer), and in the process finds himself and his priorities.

When I came back home today, I had the opportunity to see Maria. Peter and I have known Maria for 15 years. She is our rental office manager, and she watched Mattie transform from a baby into a kindergartener. She also follows the blog religiously, and it meant a lot to me today that she went out of her way to hug me and to tell me that I am doing a good job. She says she admires me for having the strength to face each day. I landed up crying, but I was very moved by her honesty and sensitivity. Some times I don't give myself credit for the things that I do, until someone forces me to stop and evaluate the situation. It goes back to what I wrote last night. Words of kindness, can make all the difference in the world, and can have a powerful and lasting impact on how we feel.

This evening, Peter and I had dinner with Mattie's oncologist, Dr. Kristen Snyder, and her husband, Patrick. Patrick is a medical doctor and researcher at NIH. We had a lovely dinner, learned more about the research process, and the more I talk with Kristen the more I realize we have a lot in common. It seems very poignant that we had dinner together on a Tuesday, 14 weeks after Mattie's death.

We are receiving Christmas cards in the mail, and when I opened one last night, it read, "Dear Vicki, Peter, and Matthew".... When I read this my heart sunk. There are some people who I only correspond with during Christmas time. For example, this particular couple we met on our honeymoon many years ago. However, we write to each other every Christmas. Naturally I did not send out cards last year, and I haven't sent out cards this year. So in all reality there are some folks who do not know about Mattie's cancer, much less his death. Seeing Mattie's name on a card was unsettling to me, and then what was even more difficult is the realization that I will need to explain to several people we know the saga we have been living for over a year.

Peter and I continue to be so pleased to see who is joining the Mattie Miracle Cancer Foundation facebook page as a "fan" and "friend." I am very well aware of the grassroots approach to getting the word out about Osteosarcoma. Each of you makes a difference and can help us spread the vital message about this horrible disease. Thank you for helping to keep Mattie's memory alive!

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am sure you are correct about the value of volunteering and helping others because we want to. There are more and more studies showing that volunteering is as good for your mental health as exercise is for your physical well being. That said, it never hurts to "pay" someone in thanks and appreciation of their efforts; well deserved praise encourages people to repeat a good effort. I have to say I am really happy that Georgetown is setting up a group and like you I hope it will be better than the last one. At least initially, it seems that the participants will be better suited to working together this time. I know there is always confidentiality but within limits I will be interested in hearing how you feel about this group. As I light candles tonight, I will think about you and pray that the light of hope is reflected in your hearts."

Monday, December 14, 2009

Monday, December 14, 2009

Tonight's picture was taken in May 2008 on Roosevelt Island. You will notice Mattie is holding a stick, but if you look closely on the stick, you will see he is featuring a tent moth caterpillar. Mattie loved collecting tent moth caterpillars in the spring. We would put them (I am not kidding maybe 10 caterpillars in one jar!) in a jar, give them oak leaves to eat, clean their jar each day, and within a week to 10 days, we would see cocoons form. He waited patiently as the days went by for the cocoons to burst open to reveal the emergence of tent moths. Mattie loved watching metamorphosis occur, and it was always an exciting time when we took the lid off of the jar to release the moths into the air.

Poem of the day: Shooting Star by Rose

You are a shooting star in the midnight sky.
The glimmer of the whole sky, but only for a moment.
You dream, you think, you wait for the right time,
then you,a single star go into the night sky for the world to see.
As you travel across the sky, you leave the hint of your presence behind.
You are the shooting star in the eye of the world.

I spent the day with Mary, Ann's mom, at her assisted living facility. We chatted, I helped her with her meals, and I had the opportunity to interact with many of the staff who work at the facility. Over the last several months I have had the chance to get to know many of these folks quite well. One story from today that I would like to share with you involved the facility's activities director. She planned a holiday party for the residents last Friday. Today I told her what a nice job she did coordinating the party, and I told her that her efforts were evident and appreciated. She thanked me, and I moved along since I was with Mary. As I was heading home tonight, she stopped me, and gave me a huge hug. She told me that my comments and feedback were just what she needed to hear today. She had tears in her eyes as she thanked me. I have no doubt that this young lady does her job because she has the desire to help older adults and this is her motivation. She is clearly not doing it for the pay or recognition. Nonetheless, as human beings, we all need to hear positive feedback about ourselves. Without it, how would we know we are doing a good job and that others truly appreciate what we do? We could guess, we may even have an internal sense for what others feel, but in all reality, no one really knows how helpful the support or "good deed" is other than the intended recipient. My intention today was simple, I just wanted this young woman to know that I perceived that the party was lively, people were having fun, and that all her planning and preparation was worth it. I had no idea at the end of the day, she too was going to give me positive feedback. It just goes to show you that a smile and kindness are such powerful forces and can change a person's outlook about his/her entire day.

While sitting with Mary today, I was flipping through a magazine when she took a cat nap. I was reading a magazine article about volunteerism and its importance. The premise of the article was that people who volunteer regularly, an hour or two a week, tend to live longer, have lower rates of depression and recover more quickly from illness. In fact, States with high volunteerism have lower rates of mortality and incidences of heart disease. Doing good deeds protects overall health twice as much as aspirin protects against heart disease. This article caught my attention, because I do believe helping people, particularly Ann's parents, after Mattie's death played a crucial part in my mental health. It has been a hard transition from caring for a dying child to caring for nothing. Not that I replaced Mattie with Ann's parents, but helping them gave me some sort of purpose and meaning to my perceived directionless days and life. The power of helping others or volunteering in the community is actually therapeutic and as I was reading this magazine article, I found that I identified with it immensely.

Mattie's social worker from Georgetown University Hospital called me to let me know that Georgetown is starting a support group for parents who lost a child. I had requested this service, and I am happy that the social workers are trying to meet this need. It starts on Thursday. I have no idea what to expect, other than I am going to it. I am trying to stay open minded, because my last experience with a Georgetown Support Group wasn't great. No fault to the leaders of the group, Mattie's issues were just so profound as a cancer patient, that once other parents heard my story, they realized they did not have much to complain about. Naturally this was NOT my intention, nor should a support group make other attendees feel as if their issues weren't as important, but the gravity of Mattie's cancer was clear for all to see and hear.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Your courage astonishes me. To put yourself in a group of Mattie's friends is amazing. But what a lovely gift to be given in return; to know that Mattie is remembered as his friends prepare for the holidays. He is and always will be a part of their lives. I am glad you gave yourself permission to cry; to hold all that inside would do nothing more than create more barriers between you and those you care about. Tears are love made visible so never be ashamed of feeling you need to cry. I hold you gently in my thoughts as I go about this day."

Sunday, December 13, 2009

Sunday, December 13, 2009


Tonight's picture was taken in May 2008, during Grandparent's day at Mattie's school. Mattie was very happy and proud to show off his school and classroom to my parents. I remember that day as if it were yesterday. My parents snapped this picture of us together in the classroom, and in retrospect, I am so happy I volunteered on that day, so I now have these special memories to pull from.


Poem of the day: Never the Same By Amanda Turner


I close my eyes,
Think maybe if I pray hard enough...
Everything will be okay.
I'll open my eyes,
And you'll be smiling down on me.
Maybe if I wish hard enough...
The last two years will just disappear,
And you'll be here.
Laughing with me just like before.
Everything like its always been,
Not all this pain,
Here as if it could replace you,
As if I could ever be the same.



Today the five gingerbread houses I created made their debut. I transported them to Ann's house, so her daughter, Abigail, and three of her friends could decorate them. Monday is Abigail's eighth birthday, and today she had a special playdate filled with fun and all sorts of holiday crafts. I had no idea who was coming to this gathering, but when I looked at all the girls, a part of my heart just broke. These were all friends of Mattie's. Ann's mother, Mary, was also visiting for the playdate, and when she said to me this must be hard for me, because Mattie should be here too, I began crying. She was right! Something seems very wrong with all of this. Despite how difficult it was at times during the playdate, it was also very touching, and what these girls may not be aware of, is they gave me a special gift today. One of Mattie's friends from kindergarten turned to me and said, "I miss Mattie." I told her that was nice of her to say, and that I know how she must feel. Later in the afternoon, Peter and I gave Abigail a singing birthday card, with the hamster dance song in it. Mattie's school counselor introduced him to the hamster dance song, and when she sent him a card which played this song, it brought him great joy. In fact, one day in the PICU we played the card for 30 minutes. It was a hard day, and that card saved both of us. So when I saw this card at the store, I felt compelled to get it for Abigail. I think Mattie would want Abigail, his special friend, to feel the same happiness he had that day!

Within the card I explained to Abigail why I bought the card for her. As Abigail read what I wrote out loud, several of Mattie's friends turned around to look at me and smiled. Ann then invited the girls to stand up and do a dance to the song the card was playing. Ann said this dance was for Mattie and most likely Mattie was looking down and smiling at his friends. If this wasn't the perfect example of Mattie's memory living on, I don't know what is. To live in the hearts of those who remain behind, is NOT to die. A great deal of today was very moving and filled my heart, and yet with all these emotions tonight I find myself very weepy. I look at Mattie's pictures and just can't understand why he wasn't spared. Why he had to suffer so, and why Peter and I are forced to live on with these feelings and memories.

I took some pictures today of the gingerbread project. On the left, is the before picture. The houses are plain and being held up by their owners. In the picture from left to right is Claire, Abigail, Charlotte, and Nikki. The picture on the right features the finished, decorated products. The girls did a great job, and had fun with the process.
















I want to thank all of you for joining us as friends of the Mattie Miracle Cancer Foundation. Our list is growing! Thank you! In addition, today for the first time, I received several of the comments some of you posted on the blog back in September and October. For some reason these comments did not show up in our account until now, and therefore if you sent me a message and I never responded to you it is because of this delay. I read many of the beautiful comments of support that you wrote while Mattie was dying. Many of them made an impression on me today, and I couldn't help but cry. Mattie touched so many lives, lives of people who he never even met in some cases. To me that is saying something quite profound about my little boy.



I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Attending this ceremony had to be a really tough thing to do and I applaud your decision to leave. I think there was a reason you could not find Mattie's ribbon at the ceremony; I had the distinct impression that Mattie's spirit was not there and that was the message of the missing ribbon. It is strange, when I start to read the blog I seem to know even before I get to that point if you felt Mattie there with you or not and this time it seemed to be a strong, "not" even at the very beginning of the telling. I am so glad that the word is spreading about the foundation and I hope that it continues to do so. The foundation (and the blog) are like the pebble in the middle of the lake, there is no telling how far the ripples will spread. Today I dedicate the energy of my practice and the lighting of the third candle to you; may you find some light in the darkness of grief."


The second message is from a former student of mine. Betsy wrote, "I read today's blog and I want to tell you that it is totally okay to feel angry when you see and hear cancer survivors and the parents who were fortunate enough to not lose their child. Because the fact is, it is completely unfair and horrible that Mattie died from cancer. Mattie should not have gotten cancer, and it should not have killed him. So anger is a completely normal and appropriate reaction to have. Don't expect yourself to be empathetic all the time. You know the stages of grief - and anger is a very real and important emotion to be feeling. Your job at this time is to allow yourself to feel angry and release all of your emotions as you feel them. Don't hold yourself up to any standards - only to be good enough to yourself that you accept how you are feeling each day and keep the faith that you are going to be okay. Eventually you won't feel so angry. Eventually the days will be brighter and you will have fewer moments of such intense emotions. My heart goes out to you. I'm thinking of you always."