Saturday, May 1, 2010

Saturday, May 1, 2010

Tonight's picture was taken in March of 2008. I had a conference to attend in Hawaii during that spring break. So Mattie and I flew to Los Angeles, and he spent four days with my parents, while I continued onto Hawaii. When I returned, we took Mattie to a museum that had a bridge with misting water. Naturally as you can see, Mattie did not miss the opportunity to do one of his favorite things. To get wet and run around. The irony is, I was running around after him attempting to keep him dry, but I could see that was a futile process. So I gave up. You can see I caught Mattie in action and smiling!

Poem of the day: Thank you by Charlie Brown


Thank you for being there
For listening, for witnessing
For holding my hand
While I pour out
The story of my grief
Once again.
Thank you for being brave
It takes a certain courage
To listen again
To something you cannot fix
Or take away.
Walking with grief is
Never easy
As I swing from
Tears to anger
To loneliness
And back-
Thank you for bearing
The unbearable task
With patience and love
And for being
My friend.

I do not have much to report today because we spent the day at home. Besides doing a few chores, the remainder of the day I spent in front of my computer. I have been trying to focus on collecting information about pediatric cancer for the last two weeks. Slowly I have been combing through it, and reading it. Today, I decided to start putting information together, because this is content I would like available to attendees at the Walk on May 23.

I am so grateful that we live in an era where technology can virtually bring a library into my home.  I have downloaded so many articles over the last two weeks, and the beauty is, I did not have to run around to various places to obtain this information. Though everything is available through the Internet, I still had to read it, and put all the information together in a way that made sense to me. Nonetheless, I tried to remain focused today, but there still is so much more that has to be done, and I realize the walk is only 22 days away.

Peter and I are very grateful to all our Walk Team leads, and we are proud to report that we have numerous local vendors who will be participating in the Walk and featuring their merchandise, as well as many wonderful raffle items for attendees to have the chance of winning. Things are starting to come together, and with that of course comes more peace of mind. Somehow I have linked the success of the Walk as not only a direct reflection of our Foundation, but more importantly to the legacy Mattie leaves behind. So despite dealing with grief, feelings of sadness, and bouts of depression, thinking of Mattie, always motivates me to get it together, and focus toward the success of the Walk. But I assure you this isn't easy, because internally sometimes my mind is scattered and my energy level on certain days is non-existent.

Today was a beautiful weather day in Washington, DC. I did not spend much time outside, but Peter and I did have dinner on our deck, and listened to the sounds of Mattie's fountains. As we were outside I couldn't help but see Speedy Red staring me right in the face. There are times, I expect Mattie to run outside and jump right onto this car, and while having dinner, I could distinctly hear Mattie calling out to us in my mind.
 
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Sometimes I believe we do what is meant to be even though we have no idea about that at the time. Clearly you were supposed to get that phone call and spend the day outside with Mary, Mattie's teacher. She was so much a special part of Mattie's world and now she has been able to help you as well. She is a wonderfully gifted lady. I can recall the video she helped put together for the memorial service quite clearly; it was definitely a project of love by both you and Mary. As you said, listening to someone who is grieving is hard and is not possible for everyone. It takes a special kind of person to be able to stay with the feelings that the griever has without judging, or trying to fix them or running away. I am so glad you have so many people around you who are willing to try to be there in the listener mode for you; some would say it is Karma. You have always given and listened, now the same is returned to you. Today as I practice I will direct my energy to the continuing work of getting the foundation and the walk organized. I hold you gently in my thoughts."

Friday, April 30, 2010

Friday, April 30, 2010
Tonight's picture was taken in April of 2008, at the spring festival held at Mattie's school. I decided to post this picture, because today was his school's 2010 spring festival. Something I know Mattie would have liked to attend. Mattie had a wonderful time at the festival with his buddies. Pictured with Mattie was his good friend Campbell and his sister, Livi. The irony is when Mattie was accepted to the St. Stephen's and St. Agnes School, he was invited to attend the 2007 festival, as a way to welcome and introduce him to the school. Mattie was so intimidated by the festival that year, that he refused to participate. Instead, we spent that festival alone together on the playground. However, by spring festival 2008, after Mattie almost completed kindergarten, he loved the event, and loved interacting with his friends. Mattie felt comfortable and part of his school community and his behavior clearly demonstrated his feelings. In a way, today was a very bittersweet day for me. However, while the spring festival was taken place, I had the wonderful opportunity to spend that entire time having tea with one of Mattie's favorite teachers, his technology teacher, Mary. Many of my faithful bloggers will remember, Mary came regularly to the hospital to work with Mattie on his technology skills. Mary would work with Mattie, and during that time she would give me a chance to take a break. Mary's kindness will never be forgotten.

Poem of the day: High Flight by John Gillespie Magee, Jr

Oh! I have slipped the surly bonds of Earth
And danced the skies on laughter-silvered wings;
Sunward I’ve climbed, and joined the tumbling mirth
of sun-split clouds, — and done a hundred things
You have not dreamed of—wheeled and soared and swung
High in the sunlit silence. Hov’ring there,
I’ve chased the shouting wind along, and flung
My eager craft through footless halls of air....
Up, up the long, delirious, burning blue
I’ve topped the wind-swept heights with easy grace
Where never lark nor even eagle flew—
And, while with silent lifting mind I’ve trod
The high untrespassed sanctity of space,
Put out my hand, and touched the face of God.

Based on last night's blog, Charlie sent me this poem. I made reference to the "missing man formation" performed by military jets that I happened to see yesterday while driving my car. Charlie sent along this poem, because she wanted me to know this is usually recited at military funerals, where the missing man formation is performed. Charlie told me that when I spoke about the missing man formation in the blog, all she could recall was Mattie in his 2007 Halloween costume, dressed as an air force pilot. I included this Halloween picture of Mattie, with his kindergarten friend, Liliana, so you could see what Charlie was referencing.
I was so tired on Thursday night, that somehow I forgot to put my cell phone in its silent mode before I went to sleep. As many of you know, my cell phone is never far from me at all times. This is one of many aftermaths of PICU life. In any case, at 9am, my phone rang. On most days I am up before then, but today wasn't one of those days. I did not get the phone in time, but I could see I had a voice mail message. It was from Mattie's preschool teacher and my friend, Margaret. Margaret wanted to know if I wanted to meet her for lunch and to sit in the gardens at the National Cathedral. At first, I was going to tell Margaret that I did not feel up to going, because I was going to work on Walk related things today. However, before I called her back, I changed my mind. Since I plan on working the entire weekend on Walk items, I decided I shouldn't pass up the opportunity to spend an afternoon with a friend.

I met Margaret at the Cathedral, and we had a nice lunch in the gardens and then walked around. We were so engrossed chatting, which happens with us, that I was completely unaware of the fact that I was getting a terrible sunburn. I now look like a lobster, but despite that fact, I am glad I got myself up, dressed, and outside today. Margaret's call came at the right time, because I needed to get out and to talk today. Staying home alone, may not have been the best plan for me, and I am so happy that we had this time together. I appreciate the opportunity to connect on an emotional level and to be understood. Margaret was telling me about a friend of her brother's who just lost his wife to cancer. Margaret's brother did not know how to help his friend. She tried to explain to her brother that there really is nothing tangible you can do when people are grieving, other than to sit with them, listen, and to provide support and hope. In fact, when I heard this I completely concurred. Grief work is not for everyone, and it is not for everyone because there isn't a quick fix, there are no tangible to do's, and certainly it may be painful to listen to the same issues and feelings over and over again. However, as Margaret's brother illustrates to me, true friendship is just that. It provides the impossible..... it provides the courage, love, and patience to sit through the unbearable and to walk the journey that no one really ever hopes to have to face in life.

It was the day of social and emotional connections. After having a delightful time with Margaret, I drove to meet up with Mary, Mattie's technology teacher. Mary surprised me with two very thoughtful gifts. She brought back tea for me from her trip to Costa Rica, and she also brought me a beautiful handmade glass angel. The angel is made from purple glass, one of my favorite colors, and sits about 8 inches tall. The glass maker is a woman who donates a portion of her proceeds to cancer organizations. I was deeply touched by this very sensitive and thoughtful gift, and I told Mary that every time I look at it, it will remind me of my little angel. Mary lost her mother to cancer, and in many ways, we understand each other. We understand the cancer battle and its aftermath, and we also understand that the loss of someone near and dear to you is not something you get over. It is something as I suspected you learn to deal with, but the wound will always, always be there. Mary was deeply fond of Mattie, and she was courageous enough to tell me how my son impacted her life. In addition, Mary allowed me to share and relive parts of Mattie's illness and death. Part of the road to healing with grief is to be able to tell one's story. I do bits and pieces of this on the blog, but reliving the pain is not something I typically share. But I found that I obviously need the freedom to be able to express what I witnessed, and I thank Mary for listening. Unlike when Mary would come visit Mattie in the hospital, today, we had the time to connect and learn more about each other. I can see why Mattie was so fond of Mary, she is a person who is so good hearted and genuine. Mattie was very astute at reading people and when Mary would come to visit him in the hospital, he typically welcomed and engaged her. That wasn't always a typical reaction to most visitors. What Mary may not know is that meeting her for tea, while I knew Mattie's school had its spring festival going on, was very supportive and meant a lot to me. I knew all of Mattie's friends would be at the festival, and life for them is filled with fun and excitement (which it should be!), while I know that my son will never experience that excitement again. In losing Mattie, I also lost a big part of my social community. I no longer fit in the parent world, but I also do not fit into the married with no children world. So it leaves me in a quandary. Fortunately while struggling through this quandary, Mary sat with me tonight.  

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I have seen a number of "missing man" flight formations in my life as an Air Force officer. In fact I have been the "officer in charge" of over 250 military funerals in my career. Very often in a funeral the High Flight poem was read and so I offer it here. I can see Mattie soaring, enjoying his time among the insects and the birds, and finally racing the planes to soar where none of us yet can go. It was as always thoughtful of you to help Ann out with her mother who clearly values your company as well as spending time with Ann's children who also appreciate your ability to listen and to participate in their games. Abigail has quite the imagination and I can see her as a writer of wonderful stories sometime in the future. As I practice today I send you the energy to help you through. I hold you gently in my thoughts."

Thursday, April 29, 2010

Thursday, April 29, 2010

Tonight's picture was taken in February 2003, when Mattie was 10 months old. As you can see, he is sitting in his walker, which we called "tot wheels," and in usual Mattie fashion he was zooming around the house and checking out everything. In this picture, you can see that he has worked the drawer open of our front hallway table, and was very eager to see what was inside.

Poem of the day: Tears for You by Charlie Brown


Tears can be
Cleansing
Burning
Uncontrollable
Unshed
Or all of these.
My tears are
The unspoken wail
Of a parent
Whose heart is torn
By the loss of a son.
I water your memory
With my tears.

Between Peter and I, we have definitely shed many tears over the loss of Mattie. For me, I have two settings, either crying uncontrollably or as the poem indicates, "unshed" tears. I should mention that unshed tears are only what the outside world can see, however, I completely understand the expression.... crying on the inside. It can be just as emotional and just as draining, yet people do not see these tears, they can only be felt in my heart and mind.

As I was driving this morning, right over the Memorial Bridge, I looked up in the sky and there I saw military jets. Lined up side by side, performing a "fly over," right over Arlington Cemetery. However, it wasn't your regular kind of fly over, instead, they performed a missing man formation. The missing man formation is an aerial salute performed as part of a flyover of aircraft at a funeral or memorial event, typically in memory of a fallen pilot. The formation flies over the ceremony low enough to be clearly seen and the leader abruptly pulls up out of the formation (literally heading straight up into the sky) while the rest of the formation continues in level flight until all aircraft are out of sight. I have heard of this kind of formation before, but I had never actually seen one. I wasn't the only car fascinated by what I was seeing. It is no wonder, many of us did not drive right off the bridge, since the performance was captivating. It was actually a very touching illustration, because it was evident it was in remembrance of someone who has departed this earth. The aircraft heading straight up to heaven made an impression on me. Naturally I couldn't help but feel for the person who lost his/her life in the line of service for our Country, and taking it one step further, it made me think of Mattie. Mattie was once a child who travelled with his group of buddies (just like these aircrafts today), but because of cancer, his journey was destined to be different, he would have to walk it alone (like this single jet shooting up to heaven).


I spent the morning with Mary (Ann's mom). Ann flew out to California to attend her aunt's wake and funeral, so with Ann gone, I decided to spend some time with Mary. Mary was naturally very upset and needed company. Later on in the day, I went to Ann's house to spend the afternoon with her children until Bob got home from work. In order to make the afternoon run effectively, I had the help of Alison (who dropped kids off to me from school, since I have yet to drive back to Mattie's lower school campus) and Ellen (taking Abigail to soccer). Tanja was also waiting in the wings to help, if I should have needed it. All I can say is through Mattie, I met quite a team of amazing moms. I appreciated their help today, even on a moment's notice! Though Ann did not ask me to do this, I felt the need to help her with chores around the house while she is gone. I remember all too well as a mom how things can pile up quickly from laundry to dishes, and I felt compelled to help her manage this while she was away. Abigail and I also had our moment by the tree. We continued with our story about "Big Red" and "Little Jack," both dogs on a cruise ship adventure. Today, I was galloping around the tree, since it was "wild west day" aboard the cruise, and "Big Red," my character was learning to ride a horse. Honestly she and I must be a sight to watch based on the zany story lines we create. Abigail let me know today that the cruise has been extended for another three weeks. The ship is now headed for the Hawaiian Islands, so clearly this story will continue to evolve. Abigail acknowledged today that she couldn't believe how we have been able to keep this story line going, and it innocently started a few weeks ago, when she wanted to go outside and climb.


I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "All I can say is that yesterday must have been a totally "packed" day. In spite of the feeling that your life is a "shambles" I think you are doing well. I know that you would not have been able to go to such an event (NCCS gala) just a few months ago and stay the evening with or without support. I am sure you were not the only person in the audience who cried last night although I suspect your tears had even more connections to them than most. Your comments about needing to treat cancer patients in a holistic manner and support their caregivers was so on target; I hope the Foundation can do something to move this along. Virginia, I loved your prose/poem of I remember you which gave me another wonderful glimpse of who Mattie was before cancer entered his life and changed everything. Mattie has touched my life so deeply that it is sometimes hard to remember that my connection to him was so tenuous. As I practice today, I will send you my energy to help you recover from what was clearly a good but challenging evening. I hold you gently in my thoughts."

Wednesday, April 28, 2010

Wednesday, April 28, 2010

Tonight's picture was taken in March of 2005. Mattie was three years old and we captured him doing something he RARELY did, which was taking a nap. In fact, this was so HIGHLY unusual for Mattie, that I can safely assume that Mattie had to have been sick at the time. What I like about this picture is it seems to capture the innocence of Mattie, the beauty of being three, his sweet face, and the peacefulness of that moment.

Poem of the day: Mattie Moon by Charlie Brown

Every month
I watch the moon
It reminds me
That you left too soon
Last night I saw
That moon so bright
I hoped it would dispel
Grief's shadows with its light
But as always
It simply shone
And reminded me
I am alone.


The poem "Mattie Moon," or so I have renamed it speaks to me. It reminds me how often I look to the night sky, stare up at the moon, and think of Mattie. Though this brings a smile to my face, it also is bittersweet. It is bittersweet, because it is a constant reminder of who is greatly missing in my life. Or as Charlie accurately states it, it reminds me that "I am alone."
I received a lovely e-mail today from Maya's mom. Some of my regular readers may remember Maya. Maya was one of Mattie's buddies at the Lombardi Cancer Clinic. Maya was Mattie's age, and in fact, she was the only friend that was in his age group that he spoke to in clinic. Mattie's other two close buddies, Brandon and Jocelyn, are older than Mattie. Maya has a spark about her. She is bright, creative, and knew how to handle herself with Mattie. In fact, they would create and act out plays together in clinic and design their own props. Adina, Maya's mom, told me today that Maya and Jocelyn still meet at clinic and play together. This made me very happy, since in some ways, I would like to think Mattie connected them together. Maya continues creating and acting out plays, and Jocelyn has filled Mattie's void. Together they have created the planet of Oogabalooga, in which Maya is the President and Jocelyn is the Vice President of the planet. The only ALLOWED visitor to the planet is Mattie. This would have been a game right up Mattie's alley! The name of the planet makes me smile, because it is a take off of Mattie's saying, Oogabooga! Which in Mattie language meant, "I love you." So in essence Maya and Jocelyn have created a planet of love, and I find it fascinating that only the three of them can inhabit it. It seems to be saying something to me about the power of friendship. Friendship transcends death. That you can still have a closeness with someone who you physically don't see and isn't present in your world anymore. Somehow I find Maya's play very thought provoking to me, which isn't unusual, since Maya like Mattie, is very intelligent and sensitive.

I am thrilled to learn that Brandon, Jocelyn, and Maya will all be at the Walk this year, and I know Mattie would be so happy to know his three Georgetown buddies continue to think of him, and support him and the cause of the Foundation.

Tonight, Peter and I were invited by Tamra (our friend, a SSSAS mom, and MMCF board member) to attend The National Coalition for Cancer Survivorship's (NCCS) 2010 Rays of Hope Gala. Tamra was the chair of the Gala committee as well as a member of NCCS' board. Tamra was a gracious host, and though she knew many people in attendance (about 400 people), she never left our sides. I can not tell you what an impression that made upon me. Going to public events is challenging for me, and somehow Tamra understood that, and supported us the entire way. The picture on the left was taken by Peter before we headed to the gala tonight.

I learned tonight that NCCS can be credited for changing the nomenclature from cancer "victim" to cancer "survivor." The organization has changed the cancer community's definition of a survivor. A survivor is someone from the time of diagnosis, throughout the cancer process, and beyond. That was really a new way of thinking for me, since in my mind a cancer survivor, is just that, a person who has completed treatment and survived. But NCCS is indeed correct, having lived through the diagnosis and treatment stages, I can say Mattie was a survivor. A survivor who fought for his life, each and every day. A little boy with courage and determination to live. If that is not a survivor, I don't know what is! However, NCCS puts words to my feelings. In that they would consider Peter and I both survivors. As Mattie's caregivers, we too survived the diagnosis and the process. I truly believe that you might as well have diagnosed me with osteosarcoma in July of 2008, because I lived, breathed, and felt every chemo treatment, every surgery, and even felt what death must be like. I am indeed a cancer survivor, and I am happy to find an organization that effectively acknowledges the importance of the cancer caregiver! The visual for tonight's gala, was one yellow umbrella in a sea of blue umbrellas. The yellow umbrella symbolizes a ray of hope! However, caregivers were constantly referred to tonight as the cancer patient's umbrella. How well stated! Because like an umbrella, a caregiver protects one from the elements. It was a beautiful analogy, and as I heard many survivors talk tonight, several of them acknowledged the importance of having family members and friends shelter, love, and support them during their battles.

The irony is, I am a cancer survivor, and though I may have been Mattie's umbrella, I was blessed enough to have been given many wonderful friends who carried an umbrella over me. In fact, there would have been no way I could have managed being Mattie's umbrella, without having a network of people holding one for me. It is important to acknowledge Team Mattie. It is a Team I will never forget, and instead hold within my heart.

Tonight's gala was very powerful for me. I cried many times. I found what speakers were saying very moving. I was particularly in awe of how people struck with cancer, were able to rebuild themselves, into stronger and more passionate individuals. That caused me to take notice. In fact it was inspiring and daunting all at the same time. I think what upset me however, was I will never get to see Mattie being able to say "I had cancer, fought it, and you can too!" During dinner, I sat between Tamra and Rep. Patrick Kennedy (D-RI). Next to Patrick was his sister, and next to his sister was sitting Ted Kennedy, Jr. Patrick and I had a lovely conversation, and he is a huge advocate for mental health parity and for the importance of integrating mental health services in cancer care, so that a patient is treated holistically. Needless to say, we were talking the same language. After the event, we did speak with Ted Kennedy, Jr. We actually were connected by phone in 2008 to Mr. Kennedy, thanks to Danelle (a RCC mom and friend). Mr. Kennedy remembered talking to us, and was saddened to hear about Mattie. Mr. Kennedy is an osteosarcoma survivor, and he agreed with me, hearing stories from others tonight, was hard to listen to at times. 

We received two books at the gala. The first one is entitled, True Compass. It is a memoir on Edward M. Kennedy's life. This book and the life of Senator Ted Kennedy were acknowledged tonight with an award. Before the award was given to his children in attendance, the audience got to see a video of Senator Kennedy before he died. The video was charming and touching, and Senator Kennedy mentioned in the clip that when he was growing up, his dad said to him he had two choices in life. One choice was to go out and do something with his life and have purpose, and the second choice, was basically to be unproductive and waste one's life. He said that night, as he was trying to fall asleep, he committed himself to the decision to live his life with purpose.

We also heard from Arch Campbell tonight as well. He is a well known broadcaster in the Washington, DC area. Mr. Campbell explained how he is a colon cancer survivor, and at the time of diagnosis was assigned a buddy, who had gone through the treatment process and was living proof that he too could do it. Mr. Campbell talked about the power of peer support. As a mental health professional I completely understand the importance of being heard, and to have the support from others who share your concerns and issues. However, as Vicki, Mattie's mom, this type of support did not work for me at all. I attended two support group meetings at the hospital (which I advocated to have established), but what I found was Mattie's cancer was very different from the stories I heard other parents reporting. This made me an outlier in the group. I found many times that I further depressed people in the group. Which of course was not hard to do, Mattie's situation was grim and his prognosis was poor at best. Perhaps in time, I may reconsider a support group, but the plain reality of the situation is I can talk to a group until the cows come home, it isn't going to change my circumstances. Mattie died, and my life is in shambles. No amount of talking is going to heal that wound. Sure it would be nice to know I am not alone, but from the other mom's I occasionally connect with through e-mail, who also lost their children this year, I see we are all having difficulties.

In the midst of everything going on tonight, Tamra and I also discussed the upcoming Walk on May 23. I told Tamra how much I appreciated Mattie's school, and all they are doing to make this event the best it can possibly be. She stopped me and said..... "don't you know you are and will always be a part of our school's community?" It was the way Tamra said this that got me, and I began to cry. I may have been the only person using a linen napkin tonight as a napkin and a handkerchief.

My mom sent me this beautiful message last night, and I wanted to share it with all of you. It is entitled, "I remember you."
______________________________________________

I Remember You By Virginia R. Sardi

When I think of your little hand holding mine,
I remember you,

And how you led the way to new adventures with every step in laughter and high spirits,
I remember you,

Takes me back to the day at Gymboree when you were just turning one and were fascinated by the teacher blowing bubbles in the air,
I remember you,

The teacher asked the class to say the word “bubble” and while you were multitasking focused on popping every bubble that came your way, your eyes lit up and loud and clear, you were the only one who yelled out “bubble” without skipping a beat to everyone’s amazement,
I remember you,

When you held my hand so tightly to calm my fear of heights up high in the Florida sky on that scary Ferris wheel,
I remember you

When I think about the hours at the window looking down on Route 66 watching traffic patterns on the highway and in the sky, it was very clear your passion for moving vehicles was basic instinct built right into your DNA so it came as no surprise that your natural talent as a driver behind the wheel of “Speedy Red” was awesome,
I remember you,

Whenever I see a stray penny on the ground, I reach down to pick it up and save it as a special treasure since you had the gift of the “eagle eye” and never failed to find one or two on every outing making it a tradition that I continue to this day,
I remember you,

So Mattie even if I can’t see your beautiful smile or hear the sound of your melodic voice, you will be alive in my heart each and every day, cause
I will always remember you!

______________________________________________

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I found this poem after seeing last night's Mattie Moon. I do so wish Mattie were still here to enjoy the sight of that moon with you. I know it was helpful to Mary to have you there yesterday to talk to; as you said, each new loss brings back memories and feelings of previous losses. Of course you are envious of those who still have their healthy children around them; that is quite natural.You don't want to take their happiness, you just wish you also had that opportunity, as we all wish for you. It seems the walk is coming along well; I can't wait to hear what the "tag line" for the foundation will be. As I practice today I will send you the energy for a day with some spaces of serenity and peace in it. I hold you gently in my thoughts."

Tuesday, April 27, 2010

Tuesday, April 27, 2010 -- Mattie died 32 weeks ago today.

Tonight's picture was taken in August of 2008, a few weeks after Mattie was diagnosed with cancer. It was a very challenging time for all three of us, and I recall on this particular afternoon, Mattie was home and in a very bad mood. Totally understandable, but when your child is in a bad mood and also dealing with cancer, you will practically stand on your head to change the tone of things. So in these troubled moments, I usually turned to my bag of tricks. In this case, my bag of tricks was generously provided to us by Team Mattie, who gave Mattie hundreds of gifts throughout his cancer battle. As you can see, in the picture Mattie decided to open up a gift given to him my his preschool buddy, John. It was a special wand to make gigantic bubbles. At first Mattie wasn't into the process, but after producing several large bubbles, I could see his attitude visibly change. There was something very special about seeing bubbles, that made us happy. Certainly Linda (Mattie's childlife specialist) knew the trick of incorporating bubbles into Mattie's play. I remember one particular afternoon in the childlife playroom at the hospital, the entire room was filled with bubbles. In fact the floor looked more like a swimming pool than a floor after Mattie got through with the room! That was another special bubble moment to remember.

Poem of the day: Missing you by Charlie Brown

Sometimes I just sit
And think of all I miss
Your laughter and your smiles
And your good night kiss
I miss your sense of humor
The spiders and the bugs
The feel of you in my lap
And your loving hugs
I've traded these for
Pennies on the ground
Kisses from the wind
Twinkling wind chimes' sound
I know that you're still with me
I can feel your presence near
But it's clearly not the same
As actually having you here.
Maybe someday I will
Be at peace with this
But I just don't see that happening
With all I have to miss.

Charlie's poem seems quite fitting to mark the 32nd week of Mattie's death. Peter and I certainly miss the laughter, the smiles, and the good night kisses! Instead, we hold dearly to the little signs in our environment to remember Mattie, such as the pennies we find on the ground, the moon at night, and the twinkling windchimes in the breezes. If you are a parent, can you imagine being in our shoes? How would you feel at the end of the day if the only tangible way you could capture the essence of your child is through things or aspects of nature? This visual exercise is most likely too surreal to actually be able to or want to participate in, but I assure you, it is hard not to be envious of those around us who have their healthy children surrounding them. I of course am happy that other children I know are not battling cancer, but I am also human and fragile at times, and therefore the word envious seems appropriate for how I am feeling today.

I had the opportunity to spend part of the day with Mary (Ann's mom). I told Mary I was very sorry to hear about the loss of her sister. Mary is concerned about her sister's husband and also saddened by the fact that she will physically be unable to go to California where the funeral will be held. In her lucid moments today, she acknowledged that such a trip would be too debilitating for her, which is indeed correct. Mary reminisced with me about her sister's life, the times she travelled to California to visit her, and the impression these trips made on her. In fact, her first trip to California was the very first time she flew on an airplane, and she told me about that experience and all the fun she had on the West Coast. In the midst of talking about her sister, I noticed that Mary also reflected on the many other losses in her life. I think this is so natural to do, and I find myself doing the same thing. When you are vulnerable to one loss, the other losses seem to resurface and compound one's feelings.

This evening, Peter and I had dinner with Liz (a friend and SSSAS mom, and the chair of last year's March for a Mattie Miracle) and Kristen. Kristen is a graphic designer working with us on a professional logo for the Foundation. This was our first face to face meeting with Kristen, and she was absolutely delightful. Her ideas are creative and capture Mattie's spirit! In fact, her first draft of a logo was well done, and we discussed tag lines with her tonight. Will still need to give this more thought, but the whole dialogue was immensely helpful. I also have been trying to brainstorm so many ideas for the walk, that each idea has a way of taking on a life of its own. Liz was able to help me take a more realistic perspective and we talked about solid ways to proceed forward. Some times when you become overwhelmed, it takes a voice of reason, to calm you down and give you a reality check. Liz did this for me tonight, and I am very appreciative.

When I got home from dinner, I started to go through my e-mails, and have been having an hysterical dialogue back and forth with Carolyn (a friend, RCC mom, and the chair of our Walk raffle this year). I think it is important to have a sense of humor in general, but when working toward the common goal of planning a successful walk, it is very necessary. Carolyn, whether she knows it or not, helped me see this tonight. 

I would like to end tonight's posting with three messages. The first message is from Mattie's oncologist and our friend. Kristen wrote, "Another Tuesday...and I am thinking of you. Much love."

The second message is from my friend, Charlie. Charlie wrote, "We all know that you help because you are a "good soul" and not for the recognition/appreciation you might get from that but it is nice to know that what one does is appreciated; it "funds" the emotional bank account and in turn, allows one to do more to help. I know each day is a hurdle to face but it always gives me hope when I see that you have a project and that you are progressing as you are on the foundation and the march. Coming up with just a few words is really tough; when the military would decide it was time to change their commercials we would always wait to see what they came up with. Does it have to be only two or three words? Can it be more of a motto or is that out of favor these days? I am sure with you and Peter and your "team" working on it you will come up with something that says what you want it to. As I practice today I will send you energy to help you with the creative side of things (not that you need it in my opinion). I hold you gently in my thoughts."

The third message is from my friend and colleague. Nancy wrote, "As Tuesdays are so difficult for you, I wanted to send love and thoughts today. I just read yesterday's blog and was so amazed to see how many hits have taken place since Marv and I left for Florida. You have truly touched many folks and we are honored to support you both on this difficult journey. Vicki, Charlie's poem spoke to me too as I arose at 3 this morning and began to pour out my feelings regarding missing my parents and my current situation with my brothers. It doesn't always give me answers yet it does free my thoughts for more productive decision making. That is why I think the blog has been so inspirational. Your aim was not to enlighten others on how to grieve and work through this horrible time for your family, however, it has accomplished this and more. I am glad that you will visit Mary today as she does count on you and both of you have given so much to each other. Although May 23rd is weeks away, I wanted you to know that I will not be able to attend the walk in person. I will be there in spirit! I hope that the day is clear and crisp for you as a reminder of days gone by when you were out and about with Mattie. These clear days are the ones that I know you cherish. I am sorry that your parents and you had only 1 Grandparent's day celebration, but, it looked like a winner. The picture of the two of you is priceless."

Monday, April 26, 2010

Monday, April 26, 2010

Tonight's picture was taken in May of 2008, on Grandparent's day at Mattie's school. Mattie was very excited to show off his classroom and his finished products to my parents. I was fortunate to be able to attend the event, because I volunteered at it. It was a day to remember. My parents had a good time at the grandparent's breakfast reception and truly enjoyed watching Mattie and his class perform a musical number in the school's auditorium. This picture of Mattie and I was taken by my mom in Mattie's classroom. I had no idea at the time that Mattie would only experience one grandparent's day ever, and that in essence so would my parents and I. I am so happy I made the time to volunteer on that day, and that I now have this memory to pull from on difficult days.

Poem of the day: Writing by Charlie Brown


Write they said
Pour your feelings out
Upon the page
Until you feel better
I will be writing for years
To cope with the pain
The sorrow, the anger
Of the loss of you.
I don't think it is working.
 
Charlie's poem tonight made me reflect on my blog postings. In July of 2008, when we started writing the blog, it was a means of mass communication to update our team on Mattie's status. However, over this almost two year time span, of which I have yet to take one day off from writing, the blog has evolved. Our readership now goes beyond just our core team, and in fact there are people in other Countries and States whom I have never met, who are loyal readers. I believe the blog has evolved in stages from initially reporting the facts, to a daily account of the physical, psychological, and social transformations that pediatric cancer forces a family to endure, to now almost a diary like account of emotions illustrating the complexities of grief and loss of a child. Maybe Charlie is right, I may be writing for quite some time in order to feel better, but on nights like tonight, and thankfully this doesn't happen often, I pause and wonder... what will I write tonight? Will anything I write be worth reading? 
 
I learned on Saturday night that Mary's (Ann's mom) sister died. Mary's sister lived in California, and I know that Mary was very close to her. Ann broke the news to her mom on Sunday, and Ann told me today that Mary was asking where I was yesterday. Mary has astutely learned that when things aren't going well or there is a crisis, I tend to be around for support. I found Mary's comment to be very insightful and sensitive. Clearly Mary has seen a pattern, after all, I was around intensely while her husband was very sick and died, I was around when she went into the hospital, and was transferred to a rehabilitation facility, and I was around when she moved into a new assisted living facility. In addition, she also knows when Ann goes out of town, I try to be on point so she doesn't feel too out of sorts. I clearly can make these connections because I am cognitively intact, however, because of Mary's disease progression, some days her lucidity is questionable. Nonetheless, for some things, Mary is as sharp as a tack, and when Ann told me Mary's comment about me, it made me stop and pause. It made me pause for two reasons. One, Mary is cognitively aware enough to see a pattern in my behavior, and two, in Mary's own way she is saying that she appreciates my support during these challenging moments. Though I do not do visit or help Mary because I want accolades and acknowledgment, I have to say it is nice to hear that perhaps something I do is making a difference in someone else's life. Mary is always kind enough to give me this feedback, and most likely I imagine she realizes the pain I am in and therefore understands that expressing her emotions to me will most likely be appreciated. Which naturally they are. It certainly takes courage and love for another person to want to take the time to express one's emotions, but I have found that connecting on this personal level is the true cornerstone of a solid relationship. Tomorrow, I decided to go visit Mary. It has been a number of weeks since I last visited her at her assisted living facility. I am not sure why, because I am very fond of her, but maybe emotionally it takes a lot to just manage myself on a day to day basis.
 
This afternoon, I met up with Ann and had lunch. We talked about Walk related items, and then I went home and spent the rest of the day glued to the computer. I was working on a tag line for the Mattie Miracle Cancer Foundation. A tag line basically describes your organization in few words, or relates a message about your organization. For example, Coca Cola's tag line is "Open Happiness" and McDonald's is, "I'm lovin' it." Trying to capture the essence of our Foundation in a few words is a royal challenge, but I wanted to put something down on paper, since we are meeting with our graphic designer tomorrow, who is putting together a more professional branding look for the Foundation. In addition to the tag line, I also have been researching pediatric cancer facts. I am trying to gather as much information as possible in order to be able to incorporate this educational information into this year's Walk.
 
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I was so glad to hear that yesterday was a productive day. I do think it is easier to cope with grief when you have tasks you have to do. That is a real positive when then tasks have to do with Mattie and they require focus and determination to get them done; this seems the perfect combination to me under the circumstances. While many of us don't call you on a daily basis that doesn't mean we are not thinking about you, wondering how you are doing and if you are managing in spite of the grief. I know I stop many times a day and whisper a little prayer for you even though I usually email only one or perhaps twice daily. I am certain that others do the same. I do thank those who are in touch more often, that support is critical in surviving the daily routine of grief. Today as I practice on my own I send you the energy I get from making that effort which is more difficult alone than with others. I hold you gently in my thoughts."

Sunday, April 25, 2010

Sunday, April 25, 2010

Tonight's picture was taken in February of 2009. As you can see, Mattie was shoving a cupcake into his mouth. In order to motivate Mattie to do physical therapy, we made a deal. For every good session he had, in which he worked hard and tried to do what Anna asked of him, he would get rewarded with a cupcake. So clearly as the picture illustrates, Mattie had a good session that day! During February and March of 2009, when we were between hospital visits, I would bake about two dozen cupcakes at home and bring them with me on each hospital admission. I kept up my end of the baking bargain, and Mattie tried not to disappoint either!

Poem of the day: When you feel Lonely
When You feel Lonely
When a person you love passes away
Look to the night sky on a clear day.
The star that, to you, appears to be bright,
Will be your loved one,
Looking upon you during the night.
The lights of heaven are what shows through
As your loved one watches all that you do.
When you feel lonely for the one that you love,
Look to the Heavens in the night sky above.

As many of my readers know, Saturday was a particularly challenging day. I decided to go to bed at 8:30pm. Which is very unlike me. I had trouble falling asleep and because it was so early, I  periodically woke up from sleep. I was trained in the PICU to sleep with my Blackberry right next to me, this habit unfortunately hasn't faded away. If you want to see me fall apart quickly, take my Blackberry away from me for a day. I could analyze this I am sure, but I am very aware of the fact that my Blackberry represented connections to the outside world while I was in the hospital, it also represented where I would get a large percentage of my social support. The significance or the need for this connection and support hasn't changed this year. I may not be living in the hospital, but instead I am dealing with the aftermath of PICU life and cancer, and naturally grief. 

Case in point, last night as I was having trouble sleeping, I was e-mailing back and forth my lifetime friend, Karen. I gave her a litany of all the things that were bothering me, some of which I do not mention on the blog. Since Mattie's illness, Karen and I start our day and end our days together through e-mails. She may not live in Washington, DC but I have a pretty good idea what her days look like even though she is in New York City. This is the beauty of technology, which I am very grateful for. In the midst of having trouble sleeping last night, I also received three very supportive emails from friends. They may not realize it, but Junko, Denise, and Tanja's e-mails came to me at the right time last night. At a time when it was important to hear from others that they simply understood why Saturday was so hard for me, and that despite the pain, they are here, still listening, and continuing to walk the journey with me. Never underestimate the power of reaching out to someone, because I can attest to the fact that it made a big difference to me. Tanja was at the Communion party with me, and she acknowledged in her e-mail that she could tell that things weren't right with me, just by observation. She was most definitely correct.

Yesterday was a day filled with crying. When I got home from the Communion party, I felt very edgy and as Peter held me, I continued crying. I felt like it was a scene from Alice in Wonderland, where Alice cried so many tears, she created a flood. Today however, was a different kind of day. It was a productive day. Peter and I never left our home, but we got several important tasks done for the Walk. Some times staying busy and focused on a goal can be a good distraction. Especially when the distraction pertains to helping to make the Walk a successful event.

I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "I'm sorry that Saturday was such a tough day for you. It makes perfect sense that seeing what Mattie will never get to experience would bring new grief to you. Unfortunately, that is how life is when you have suffered the death of a child; your own life is filled with moments and events that will never be experienced by your son. While we often are in a position to mourn the death of parents or grandparents and we wish they were there for events, it doesn't come with the same force as that of the missing child. I hope that as time goes on you can stand back a little further from the ocean of grief and have it be a little less overwhelming for you. I do hope that today is better, that the road turns upward for a while at least and that you have a sense of peace for a while. As I practice today, I will send my energy to you to help you remain upright in the swirling waters of mourning. I hold you gently in my thoughts."

The second message is from my friend and colleague. Denise wrote, "It seems so unfair that sometimes in order to stay connected to Mattie, you experience so much pain through remembering so many beautiful moments with Mattie and grieving the loss of all the moments that you will not share. I wish that I, and I know my wish would be echoed by so many others, could somehow magically lift the burden and pain from your heart and carry it for awhile so that you could experience the joy of those moments without the sorrow. The miracle of Mattie is that he touched so many lives and all those he touched are here for you and Peter as you struggle with this incredibly devastating loss. I was listening to some music yesterday, during a quiet time, and the music reminded me of sitting in the sun. And I thought of Mattie and the story of the creation of his beautiful painting and his dance as he painted it in all those beautiful colors. Mattie left his footprint on so many hearts and all of those hearts hold you all within them. I wish you peace in your heart."

The third message is from a friend and colleague. Sara wrote, "I hope you are finding some peace and solace today--or maybe just some numbness--which you so aptly stated is often easier than feeling. I'm sorry yesterday was hard for you, but completely understand this. The centerpiece you made is absolutely gorgeous. It astounds me that even in your immense grief you have the capability to not only create, but to create beautiful things. This speaks to the spirit that is still inside of you despite your tremendous loss and grief. You amaze me. I went to a first communion yesterday and also thought of Mattie a lot while I was there. It is hard to watch life continue to go on when you feel so lost in grief, I think. And all the rites of spring just make it that much harder. I just want you to know that I think of Mattie a lot and I still can't believe he isn't here. Rationally I am aware of this but it's like every now and then my emotions are jolted and I think really? Why? Such a beautiful little boy, our world was so much better with him in it. He had such a wonderful smile and I really miss seeing that. Life is just so precious."