Saturday, April 24, 2010

Saturday, April 24, 2010

Tonight's picture was taken in May of 2009. My mom and I took Mattie out for a walk in the wagon that Linda (Mattie's childlife specialist) gave him. Mattie loved this wagon, most likely because he could take a walk without using a wheelchair. In a way, it made him feel more like a kid, rather than a child with cancer. Honestly when I think about what Mattie had to endure, the fact that he couldn't walk, and that he always felt physically ill, it is therefore a wonder where he found the energy or courage to smile. At the time, I did not give that beautiful smile a second thought. But I try to imagine myself in Mattie's situation, and I frankly wouldn't have had much to smile about. This speaks to the beauty, spirit, and love of Mattie.

Poem of the day: They Say There is a Reason

They say there is a reason,
They say that time will heal,
But neither time nor reason,
Will change the way I feel,
For no-one knows the heartache,
That lies behind our smiles,
No-one knows how many times,
We have broken down and cried,
We want to tell you something,
So there won't be any doubt,
You're so wonderful to think of,
But so hard to be without.

Today was a very hard day for Peter and I. I am good at traveling around in a state of numbness on certain occasions, but there was something about attending Abigail's First Holy Communion celebration that moved me from numbness into a very sad and depressed state. I frankly would prefer numbness any day, versus how I am feeling right now. Peter and I sat next to each other at the church, and I could sense Peter was shutting down. After Mattie's death, I have found that it takes me a while sometimes to focus on what is being said and what is going on in my environment. However, as I was beginning to settle into the mass and absorb everything around me, it became too much. We were surrounded by CHILDREN. Everywhere! To understand how I felt, imagine putting a person deathly afraid of snakes, in a pit filled with snakes crawling all over the place. It would be a shock and horror, but magnified because the snakes would be everywhere you turn, and there would be no escape. Being in the church today, in a way, felt that way for Peter and I. From our perspective we were surrounded by reminders of all the things we do not have in our life, and just like the snake analogy, it left us anxious and upset.

I asked Peter why he thought being in the church was so hard for us. His simple answer was because it highlighted yet another event that Mattie has missed out on in his life, and therefore of which we as parents have been robbed. His explanation made perfect sense to me. Peter and I then went to Ann's house, where Abigail's party was being held. Mary (Ann's mom) was in attendance, and I spent some time with her. In moments when I feel completely misunderstood, I usually stay not far from Mary. Most likely because Mary understands my feelings, most times, without me having to say anything. Mary was telling me that she is having trouble remembering things from day to day, and as I was listening to her, I explained to her that despite her disease she is doing a very good job. But then I joked with her, and said that I forget things too, and I told her I don't have an excuse like she does. At which point, she said to me, that wasn't true! I have the best excuse in the world as to why I can't remember things fully. With that, I paused, and I told her she was absolutely right. But I do think you need to be a mom who has lost a child at times to truly get the magnitude of my pain and feelings.

Abigail's party was beautiful and everyone was having a good time. But in moments like these, Peter and I do find that we need to remove ourselves, and we did today periodically. It feels as if seeing happiness, families intact, babies, and children, just short circuit my wiring. As the afternoon went on, I could feel a massive emotional outburst was ready to happen. So naturally I removed myself, because this event is not about me, it was about Abigail and her day. Nonetheless, I cried on my drive home, I cried as I went grocery shopping, and I continue to crying tonight. In these crying fits, I feel a deep sense of loss, I feel isolated, I feel as if no one understands Peter and I, and mostly I feel disconnected from life. I can only hope for some sort of peace tomorrow, because just when I think I can't reach a lower point in this process, I surprise myself.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "First, I have to say that the centerpieces you created were amazing. That's a real gift. I can't even imagine where you would begin to create something like that. How very appropriate for Abigail's special day; what a lovely theme and what a great way to express it. I think finding the pennies was a sign; I have to wonder if Mattie was telling you that he would be there for Abigail's Communion celebration today. What you said about Americans living for the future is true. What we need as always, is a balance; one looks toward the future and plans for it but you have to find the time to actually live in the here and now and appreciate what you have. Somehow all this reminds me of the Tim McGraw song Live Like You Were Dying" http://new.music.yahoo.com/videos/tim-mcgraw/live-like-you-were-dying--2170761 The key is the balance between appreciating what we have and still being able to dream and work for what we want. That's not an easy thing to do. As I practice today and try to find that balance, I will send the energy to you so that you can begin to find some peace in now and some energy to plan for the future. I hold you gently in my thoughts."

Friday, April 23, 2010

Friday, April 23, 2010

Tonight's picture was taken in April of 2009, on the Washington Mall. Peter and I took Mattie for a walk and a picnic. This was something Mattie always liked to do, however, despite bringing all sorts of snacks for Mattie, he was unable to eat anything. In many ways, I look back at that time, and wonder how Mattie's body could sustain itself without much food or water each day. One thing was for sure, in many ways, Mattie was stronger than the cancer growing inside of him. He fought this horrific disease with all of his might, and even though he had been through hell and beyond, he still had a smile of his face. As was evident in this picture. If that is not amazing, I don't know what is! As I was selecting tonight's photo, I came across this one, and paused. Today while riding the Metro in Washington, DC, I observed a mom with her son waiting on the platform for a train. There was something about how her son was hugging her that reminded me of Mattie. It is funny how I can go from being fine one minute to feeling like I am drowning in emotion in the next. Seeing today's scene only signaled to me that we are missing a very important person in our lives, and this loss has left our lives lonely, sad, and forever changed.

Poem of the day: An Angel's Kiss

We go through life so often

Not stopping to enjoy the day,

And we take each one for granted

As we travel on our way.

We never stop to measure

Anything we just might miss,

But if the wind should blow by softly

You'll feel an angel's kiss.

A kiss that is sent from Heaven

A kiss from up above,

A kiss that is very special

From someone that you love.

For in your pain and sorrow
An angel's kiss will help you through,
This kiss is very private
For it is meant for only you.
So when your hearts are heavy
And filled with tears and pain,
And no one can console you
Remember once again.....
About the ones you grieve for
Because you sadly miss
And the gentle breeze you took for granted
Was just......... "an angel's kiss."

I found this poem today entitled, "An Angel's Kiss." I liked the sentiment of the poem very much, because it makes me appreciate the breezes and wind much more now, if I can symbolically think that these aspects of nature are helping me reconnect with Mattie. However, what really struck me about the poem is that I believe when you have the type of traumatic and unnatural loss that Peter and I have had, it changes your viewpoint on the world. Specifically the poem states, "We go through life so often, Not stopping to enjoy the day, And we take each one for granted, As we travel on our way. We never stop to measure, Anything we just might miss." I must admit that I was guilty of all of this prior to Mattie developing cancer. I made many assumptions about life, I was under the impression that I could control my life and my destiny, I was deliberate, calculated, and very measured. I most definitely did not just enjoy the day, why? Because I figured I would have another day just like it tomorrow or in the future where I would then have the time to appreciate things and people. But in the moment, I was busy, productive, and focused. However, in a way, cancer made me see each day differently, people differently, and the future differently. I have learned that nothing in life is guaranteed, that sometimes life gives you things that are indeed too much to bear, and yet somehow you are forced to manage and cope. But cancer ultimately makes you live in the present. Not the future. We are a very future oriented society, we aren't happy with what we have now or are doing now. We are always aiming for tomorrow, to achieve and strive for something better. I am certainly not advocating that this is a bad philosophy, but it is when you can no longer appreciate the moment. You can't appreciate what you have right now. When Mattie developed cancer, I learned to live day by day. It wasn't an easy transition for me to live in this manner, but somehow now that he is gone, I haven't resorted back to my old ways, instead I have remained in this day to day moment.
 
Cancer was the worst thing that happened to Peter and I, and at the same time, dealing with a terminal illness frees you in ways that you never knew. For example, I feel freer to say exactly what is on my mind rather than holding it back. Which can be a good or a bad thing if you are the recipient. But mostly, I see how precious raising a child is, how special the hugs, kisses, endless questions, and day to day growth are, and unfortunately sometimes in the moment parenting is SO difficult and SO challenging, we take our role for granted. However, not having it anymore, gives me amazing clarity, sensitivity, and perspective. If your child is alive and healthy, you then have received life's greatest gift. It really is that simple. You have signed up for one of life's toughest challenges, and yet one of life's greatest rewards. I wish I could go into Mattie's room tonight and give him a hug, and appreciate the moment. But I can't, so instead, I hope you can capture something from my words tonight, that will motivate you to get up, find your children, and give them a hug and let them know that it is through them you have experienced the true meaning and purpose in life.
 
I had the opportunity to attend another licensure board meeting today. I have always found my work with the board very stimulating, and I have to say despite my immense feelings of loss and grief, I still find this work rewarding and challenging. In the afternoon, I met up with Ann and got to spend time with her cousins who are in town from Boston, to attend Abigail's Holy Communion celebration tomorrow. Ann's cousin, Helen, is a daily blog reader, and I am very touched that she continues to support us in this way.
 
As promised I took some pictures of the centerpiece on Ann's table. The theme for Abigail's party is butterflies and birds. This seems like the perfect theme to celebrate a very special occasion, especially since to me butterflies and birds, signify spring, renewal, and the importance of connecting with one's spiritual side.

Left: This is a close up of the actual centerpiece. I bought a birdhouse at a craft store, popped off the top, painted it, and then arranged silk flowers inside of it. You may notice I also put Abigail's name on the left side of the house, and there are dragonflies and butterflies sitting on the flowers. The birdhouse is sitting on a platter filled with colorful pebbles, and on the pebbles sit birds, and even a tiny bird nest.

Right: From this picture, you can get a understanding of the trailing nature of this butterfly garden. With one big birdhouse in the center, and two little ones which I hand painted next to the centerpiece. Between the centerpiece and the white vases (filled with fresh flowers) are tiny butterfly votive candles, which you may not be able to see.

Peter and I went out to dinner tonight and on our way home, we came across one penny on the ground after another. This was highly unusual, and naturally we couldn't help but think that our Mattie angel is sending us a signal along our journey home.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Making a centerpiece or the other craft projects you've done is a gift. Somehow whenever I attempt something like that it appears to be made by a 2nd grader (one who skipped the kindergarten lessons on how to handle scissors and crayons). Perhaps you can make something for the Mattie March that can be raffled off? I have to say that I am glad that the woman in the store who noticed your bracelet and commented was a thoughtful individual. Some of the things people respond with when we honestly respond to their questions amazes me in the lack of concern or rudeness. I am so glad this was not one of those times. As Karen said maybe you can find a way to put your skills together. Some new version of art therapy perhaps? As I practice today I will send my positive energy to you to help you keep the drive you need to make the march and the foundation a success. I hold you gently in my thoughts."

Thursday, April 22, 2010

Thursday, April 22, 2010

Tonight's picture was taken in July of 2009, in the physical therapy gym at the Georgetown University Hospital. As you can see Mattie was working hard trying to build up strength in his arms. The yellow ball in the picture was actually quite heavy, and it took a great deal of energy for Mattie to toss it. But Anna (Mattie's physical therapist) knew how to inspire Mattie, and Mattie for the most part always complied and gave it his all. This picture was taken two months before Mattie died, and though he complained that his stomach always hurt him and he wasn't hungry, I never imagined the reason for this was that his cancer had spread rapidly. I assumed it was an after effect of the chemotherapy. You will also notice that Mattie was wearing a shirt with orange in it. Orange and red were Mattie's favorite colors. He liked bold and vibrant colors, which is why we felt the Mattie Miracle Cancer Foundation colors had to incorporate Mattie's preferences.  

Poem of the day: I Miss Your Laughter by Nicholas Gordon

I miss your laughter, fun, and gentleness.
I miss the things I used to do for you.
I miss the time, now filled with emptiness,
When each day was a stage for something new.
I miss your love, though mine for you remains,
A passion with no outlet to the sea, A teardrop in a desert,
that contains What's left of my maternal ecstasy.
I miss your presence, like a silent chord
That anchored even solitude in grace.
I miss, for my love's labor, the reward
Of seeing some small pleasure in your face.
All these I miss, and yet they are all here
Within my heart, far more than I can bear.

I had the opportunity today to help Ann with several flower arrangements for her daughter's upcoming Holy Communion party on Saturday. It is amazing how fresh flowers can transform any living space and make it special and magical all at the same time. Ann and I have been trying to track down sunflowers for the last three days and some other specific flowers as well. Today, we were successful and I would say that Abigail's party is well on its way to being quite memorable.

My lifetime friend, Karen, has been following my craft projects very carefully, and today as always she sent me an hysterical e-mail. In these witty e-mails, she tries to joke with me, and at the same time encourage me to open up my own business specializing in crafts, landscaping, party planning, and maybe throw in professional counseling in this mix. Karen has known me since 6th grade, and she has always seen me as a very creative person. However, this is not a side most people see in me. I find it particularly interesting that as I am dealing with Mattie's loss, I am returning to skills that I used when I was much younger. Seeing and creating beauty seem to be very therapeutic for me.

I went to AC Moore (a craft store) today to look for some materials for the MMCF Pediatric Cancer Walk. I have spent a lot of time in this store recently, and I am getting to know certain people in the store. There is a lovely lady who works the check out counter, and today she admired the beaded bracelet that Mattie made me. She asked if I made it, and I explained that I did not, but my son made it for me. She went on to tell me that he is very talented and that I should cherish it. I responded by telling her I most definitely do especially since he died of cancer. She was visibly stunned to hear this, but responded in a very warm and sympathetic manner. Which fits her personality. But she is not the first person to comment to me on Mattie's bracelet. I have experienced complete strangers coming to me and asking me about the bracelet. There is something very special about it, it means a great deal to me, and it makes me feel closer to Mattie.
We are continuing to make great progress with plans for the MMCF Walk, and we are thrilled that registrations are rolling in. When Peter got home from work today, we went for a walk by the water. It was nice to get outside together and chat about the day's activities. As we were headed back inside tonight, Peter pointed out the moon to me. As always, I said to myself, "there is my Mattie Moon!"

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I love this picture of Mattie with the legos from Kazu; so much of Mattie's time was spent building and creating with legos. I suspect that if you did a search for legos, your blog would come up. I am sure that yesterday's meeting with the DC city council budget oversight committee was very challenging. It really is difficult to know what is the right thing to do on behalf of one's child; our children trust us and we in turn trust our doctors to give us the best medical advice they can. Unfortunately, sometimes they don't know or there is just not enough information available and there are many members of the medical community who are unwilling to say that they don't have all the answers. I am glad you had the best help available in spite of the outcome; you could not have had a more open, supporting and caring group of professionals to help you as you fought for Mattie. Today as I practice, I will send you the energy you need to continue the planning for the walk that is both a tribute to Mattie and a hope for the future for other children with this dreaded disease. I hold you gently in my thoughts."

The second message is from a friend of my sister-in-law's. We had the opportunity to meet Lesley for the first time in September 2009, at Mattie's celebration of life event. What you should know is Lesley lives in Boston, and came down to Washington, DC just for the day to attend Mattie's funeral. I am also proud to report that Lesley was our first official on-line Foundation contributor today, and we are very grateful for her support. Lesley wrote, "There is not a day that I do not think about you, put myself in your position, and wonder if I would have the strength to give back in the way that you do. I am sure the walk will be a success. It will be another reminder of how adored your son was and how this horrible disease needs funding."

Wednesday, April 21, 2010

Wednesday, April 21, 2010

Tonight's picture was taken in August of 2009. Mattie just received an incredible Lego set from his buddy, Kazu. As you can see Mattie was all smiles with excitement. Mattie was having great difficulty breathing by this point, and was on oxygen pretty consistently while at home. Unfortunately his time at home was short lived, because as the cancer was taking over his body, the pain was too intense to be at home.

Poem of the day: Grief by Claire Abbott

Grief
One word.
Used to describe so many emotions.
Hollowness, pain, anger, guilt,
Hurting, sadness, lonely,
Do I need to say more.
One word, Grief.
Don't say you have been there,
You may have lost someone, something,
but your grief is not the same as mine.
Grief, does not explain how I feel

I had the opportunity to attend a DC City Council Budget Oversight Hearing this morning. As the chair of the DC Board of Professional Counseling, I was asked to testify regarding 2011's budget and specifically to recommend to the city council the need to create an interdisciplinary team of licensure board chairs to oversee our own budget. Clearly, because of Mattie's illness and death, I have been out of loop with everything. However, I could see my physical support and presence was needed at this hearing today, so there I sat for three hours, until the city council was ready to hear from the panel I presented with. Mind you, before it was my turn, I must have heard the testimony of over 20 individuals, and at least five other organizational panels.

While listening to people talking for several hours one issue in particular caught my attention. Several individuals came to testify about the HPV (Human Papillomavirus) vaccine, which in 2007, became a mandatory vaccine for girls entering the sixth grade in the District of Columbia. There was NO one in the audience today in favor of this vaccine. Gardasil, is the name of the HPV vaccine, created by Merck. Right from the Gardasil webpage it says, "GARDASIL is the only HPV vaccine that helps protect against 4 types of HPV. In girls and young women ages 9 to 26, GARDASIL helps protect against 2 types of HPV that cause about 75% of cervical cancer cases, and 2 more types that cause 90% of genital warts cases. In boys and young men ages 9 to 26, GARDASIL helps protect against 90% of genital warts cases." 

There were medical professionals and parents who testified about Gardasil. One woman's daughter died after the administration of the vaccine, a girl who was otherwise healthy, and had no pre-existing conditions. This mom was down right angry and upset over the loss of her daughter. I couldn't help but feel for this mom, because though our situations are quite different, I get that loss all too well. She explained to the audience that she trusted the government to make sound and ethical decisions regarding their recommendation to make such a vaccine mandatory. However, she expressed her distain for this decision, and she said that it was made in haste, without adequate efficacy data. In fact, Gardasil has only been tested on a couple of hundred children. That really isn't many, and as one physician stated, this vaccine isn't right for every child. Individual differences must be taken into account before administering it, and she went on to say that there are more effective and proven ways to prevent cervical cancer than the vaccine. Needless to say the dialogue fascinated me, and what was even more interesting is the fact that $150 million was allocated for HPV vaccine educational sessions in each of the wards in District of Columbia, and for the most part many of these training never came to fruition. Participants were asking what did the government do with this money if it did not go toward education? The irony is many parents did not realize they could op out of this mandatory vaccine, if they did not want their child to receive it. The sad part is this language is stated very clearly in the Bill that was passed into law. But some how parents and physicians in the District were unaware of the option to op out. All I could think about while listening to this is parents must be responsible for making the right decisions for their child. No physician or governmental agency can do this for you. Taking on the role of a parent is perhaps the toughest life challenge, and once in this role, you must be forever viligant.

With that said, I felt absolutely awful for this mother who lost her daughter. She trusted the city government, and better yet she trusted her doctor. Most of us are conditioned to getting vaccines for our children, so it is very understandable why this mom allowed her daughter to get the HPV vaccine. It appeared to be required by law, and her daughter's physician was recommending it. I can only imagine the guilt this mother lives with each day, and I admired her courage to stand up today and speak, in order to prevent someone else from experiencing her same nightmare.

It came to our attention today that there are many of our readers who want to support the Foundation, however, because they live out of State, will be unable to attend the Walk. Therefore, tonight Peter created a donate button on the cancer walk webpage, so our supporters will be able to make contributions. I appreciate those of you who suggested this to me, and most of all we appreciate the continued support you are giving us. For more information about the Walk and to make a tax deductible contribution to the Foundation, please visit:

https://www.mattiemiracle.com/Cancer_Walk.html


This evening Peter and I had a delightful conference call with Liz. Liz was the chair of the Mattie Miracle Walk last year. Her son and Mattie were in kindergarten together, and we are so fortunate to have Liz on our core planning committee for this year's Walk. To know Liz is to love her, she is dynamic, creative, and very passionate about what she does. She is helping us create a professional logo for the Foundation and has connected us with a very thoughtful graphic designer. Another woman who seems to be captivated by Mattie's story, and truly wants to help us make the Foundation a success. At least from a branding perspective. As I told Liz earlier today, in the initial phases of getting the Foundation off the ground, it is imperative to me that we work with others who understand our convictions, and who also share the same passion to help children and their families living with cancer. I find when someone's heart and mind are behind this cause, then only great products can result. A logo is a very important mark for the Foundation, and it is important to Peter and I that it captures the essence of Mattie. This is Mattie's legacy, and I take such a symbol very seriously, and thankfully we found a graphic artist who shares our vision.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Today's practice was totally different from any I have done before. Today, all in the room were women and we did "moon salutations" rather than sun salutations. The sun represents the male energy in us and the moon, the female. We were centered on our breath and our emotions; acknowledging but not judging and accepting where we are now. It seemed very different and although there was much I could not do; I felt as though I would eventually get to the place where I could do it if I was willing to accept my own limitations and grow at my own pace. I left practice feeling very centered, calm and filled with energy. I send that on to you especially, as it is from my female side to yours; to help you accept what you have to and to see the small spaces in which you can begin to grow. I hold you gently in my thoughts."

The second message is from a fellow RCC mom and friend. Carolyn's daughter and Mattie were in the same preschool class, and Carolyn is our raffle committee leader for this year's Walk. She and her committee are doing a great job and working very hard at finding wonderful and enticing raffle items. Carolyn wrote, "I just had to write this morning to thank you again for your blog. I have to admit, this morning wasn’t going so well - had a rough morning with the kids, e-mails from staff bickering about petty stuff, feeling a bit overwhelmed by work and life in general, basically I was in quite a “funk.” Even when getting coffee this morning. a colleague asked “how are you today” and my response was “it’s one of those days – is it over yet” (which is very rarely my attitude). Then I sat down and opened up the blog and saw Mattie’s sweet, angelic face. This photo is one of the most beautiful and touching photos I have ever seen and if this doesn’t put into perspective what is important in life, I don’t know what could. I distinctly remember the first time you posted this photo on the blog – and remember the tears streaming down my face uncontrollably. So, I shut my door, had myself a little cry, and am now ready to face the day and whatever challenges it holds."

Tuesday, April 20, 2010

Tuesday, April 20, 2010 -- Mattie died 31 weeks ago today.

Tonight's picture was taken in August 2009 by Peter. Peter captured a moment in time when Mattie fell asleep on our couch. Mattie NEVER napped, but as he was battling cancer, and fighting for his life near the end, he would wear out very easily, and needed to periodically rest. There is something about this picture that captures my attention. Perhaps it was Mattie's peaceful and angelic look, or simply despite his body being ravaged by cancer, he still was a beautiful boy inside and out. As today marks, the 31st week since Mattie died, I thought this picture would be very appropriate. When I stare at this picture, all I can say is I miss that face, that personality, my son.


Poem of the day: Grieving by Charlie Brown


I know you said look up
Try to find hope in the future
But what hope is there
When he is gone?
Some days all I can do is survive
Breathing is a task
Getting up an obstacle
Facing the world an impossibility
Please don't rush me
Out of my grief
Don't ask me
To hide my pain
Just be here
Let me tell my story
To an audience
Once again
I know it is hard
To see me like this
So much harder
To actually be here
You can't find
A solution to my crisis
A salve for my pain
There is none
I have to learn
To live with it
Give me time
And space to grieve.


When you truly absorb tonight's picture and stare at it a while, it is impossible not to feel outrage and deep sadness over the loss of Mattie. I can't help but look at this picture and feel as if nothing is right in the world, nor will ever be right in the world, when pediatric cancer is alive and well. Keep in mind that 46 children A DAY are diagnosed with cancer, and cancer is the number ONE disease killer in children. Despite the high prevalence and growing health care costs associated with caring for a child with cancer, the funding for pediatric cancer clinical trials has gone down every year since 2003. Despite very aggressive therapies that approach the limits of tolerability for children, the overall survival rate for childhood cancer has remained unchanged since 1998. In fact, Dr. David Smith, Division Director of Pediatric Oncology at Johns Hopkins, stated that the survival rates for children and adolescents with osteosarcoma have been unchanged for 15 years. Childhood cancer is desperately underfunded and the standard medical protocols used to treat children are over 25 years old. Just SHOCKING! These facts are all unacceptable especially when considering that 2,300 children and teenagers die EACH YEAR from cancer.

The facts are what they are, and so much more needs to be done to help secure the lives of children diagnosed each year with cancer. The Mattie Miracle Cancer Foundation is committed to making a difference. As Peter and I talked over dinner last night, MMCF's mission is simple, just remember your ABC's. A.............Awareness and Advocacy for children and families dealing with cancer, B............ Building and providing support one family at a time, and C............... Children, we must always remain focused on why we are doing this, to assure that children have the chance to live happy and productive lives! Peter and I appreciate the wonderful support we are receiving through registrations for our MMCF Pediatric Cancer Walk on May 23. We thank you in advance for getting the word out about the Foundation's first event.

I had the opportunity to spend some time outside today, between being in Ann's garden, and having tree time with Abigail. The irony is our story about the two dogs on a cruise, picked up right where we left off. Today, Katharina joined us as well, and it was nice to have her participation. Mind you this tree is on a neighboring property. Today, the neighbor's children were outside, along with their dogs! Despite all these distractions, Abigail did not miss a beat. The story went on, and she can do this for hours. I am used to marathon play times because of Mattie, so in essence that skill shone through today. Mattie taught me well. He taught me a great deal about patience, love, persistence, and loyalty.

I would like to end tonight's posting with three messages. The first message is from Mattie's oncologist and our friend. Kristen wrote, "It is not only on Tuesdays, but everyday that you and Mattie touch hearts. I can not wait for the day when you are able to look at your work and see all that you, Mattie, and your team have accomplished in the fight against Osteosarcoma and pediatric cancers. They need is great...and you are fulfilling that need. Thinking of you on this Tuesday and every day."

The second message is from my friend, Charlie. Charlie wrote, "I am sure a lot of people had difficulty reading yesterday's blog; it is very hard to sit and not be able to do anything to help someone with the level of pain that you are experiencing. All that any of us can do is to listen and to witness and that runs counter to everything that we are taught to do. Facing a future without Mattie must seem pointless and empty; I know that nothing and no one can replace him but I hope you do find a reason to go on, a way to immortalize his spirit and memory that will eventually bring some healing to you. As you said AA works because people listen and don't give feedback; perhaps you can find that in a group like Compassionate Friends. As I practice today I will send you the energy to keep going until it becomes a way forward. I hold you gently in my thoughts."

The third message is from a former student, and now my friend. Susan wrote, "I read last nights "intro" explaining the picture and it made me smile. How very lucky Mattie was to have a mom who could enter into imaginary play so easily! When I see kids at the grocery story in their Superman uniform I laugh out loud. GO MOM, I want to yell. Any mom who can give herself up to not worrying about "what other people think" and can just love being a mom has just got to raise secure, independent kids...like Mattie. One of my favorite pictures was taken in LA at Victoria's Secret. Ari (age 5) and I were dressed up in robes with Caribou feathers...we'd been pretending we were French Spies on a mission. To the store's credit they let us run around there talking in our really poor French accents laughing our heads off. Here's to the special of the day, Chef Mattie's Bug Bouillabaisse!! And his mom who knows what is important!!"

Monday, April 19, 2010

Monday, April 19, 2010

Tonight's picture was taken in July of 2009. It was during that time, that Mattie and I made up a game involving cooking plastic bug stew. Mattie was chef Mattie, and I was the health inspector coming in periodically to check the cleanliness and standards of his restaurant. Naturally as the inspector, I was always very disturbed to see the chef cooking bugs! Mattie loved my reactions, and particularly loved the different accents I would use, to signify the different customers coming into his restaurant. I remember this interaction as if it were yesterday. Mattie had a good sense of humor, and one couldn't help but laugh, as Mattie was talking about his famous bug stew.


Poem of the day: My Son by Suzanne Kleczar

Time is moving forward
But the pain remains the same
Eight months have passed now
And nothing seems to change.
You were taken so suddenly
I could never be prepared
For the pain that I would feel
For the deep and dark despair.
A dark cloud descended
Over my world that day
For the loss of my child
There are no words I can say.
I long to see your face
To see you walk into the room
I long to hear your voice
Saying Mum I love you too
I know this will never be
I know this for a fact
But that doesn’t stop the longing
The longing to have you back
I can’t deal with the pain inside
I feel emotionally shutdown
From the pain that I try to hide.
The pain that’s so deep down.
I have asked myself many times
Will it always hurt this way?
Will the pain ever subside?
Will it ever go away?
They say time heals all wounds
I really don’t think that is true
I just have to learn to live
With the pain of losing you.
So on this sad day my son
I want to say to you
How very much I love you
And miss you so much too


This poem, "My Son," accurately portrays the feelings of grief experienced by a parent who has lost a child. The loss of a child is traumatic. NO amount of time will heal such a wound, and to advise someone that things will get better is not only being optimistic, but is rushing the grief process. I can certainly understand why someone may want to do this for me, because watching me and hearing me throughout this process is not easy. I may only be seven months into this process, but I know myself, I know my feelings, and what I can sense is that a parent never gets over the loss of a child. If books and articles claim that such healing can occur, I would challenge it. The best outcome possible is figuring out how to live with this intense pain and grief. That is most likely as good as it gets. Which is not an upbeat prognosis from where I stand.

Asking a parent who has lost a child to look toward the future is fraught with issues. There is so much that needs to be worked through emotionally before allowing one's self to even conceive of a future. Surviving your child is NOT natural, and seeing your child suffer with cancer and die before your eyes in a horrific way, are earth shattering. There is NO way you can look to the future, when you are stuck in the past and present. Moving toward the future to me can have negative connotations, not positive ones. The future only reminds me of the fact that I have a future without Mattie. Being able to accept the future, and the fact that time is moving on, also means that I can come to peace with my past. I don't see that happening any time soon, and this forward thinking only brings about further feelings of guilt. The guilt that I am here, Mattie isn't, and there was nothing Peter or I could do to change this outcome. When your child dies, many existential questions can be asked, such as... is life worth living without your child? What is life about without your child in it? What defines you as a person now that your child and your role are gone? What does the future hold, what do family holidays look like, etc? I am sure these questions are not easy to read, nor are they easy to write. However, it is the fact of the reality. Putting these raw feelings and emotions aside to look toward the future are counterproductive in my book. I can't see the future. Some days I am lucky I can make it through the day. But I do know that solutions to my crisis is NOT what I am looking for. Because when you loved someone so deeply, who was a part of you, there are NO solutions to this lost love. Nothing can replace Mattie. Instead of solutions, I am simply looking to be understood. That in and of itself is a very powerful therapeutic tool.

For many years I always questioned the 12 step approach to addictions. In one class in particular that I taught at the University, I required my students to attend a 12 step meeting and come back to class and discuss their thoughts and feelings about the process. Twelve step programs like Alcoholics Anonymous for example are not support groups, nor are they therapy. The whole premise is to attend, hear other people's stories, and to see that you are not alone with your issue. The problem I had with this model is there is no cross talk. An individual can spill his/her guts to a group or audience of people, but the group doesn't respond back in any manner. The thinking is just being heard is a powerful force. In a way, each night as I write the blog, I am doing the same thing. I am sharing my thoughts and feelings about grief, and the sheer process of verbalizing my feelings in a way is therapeutic. Some times I get feedback from others, but for the most part, I am experiencing the power of being heard, and naturally I appreciate the support of all of you listening.    

I finished the centerpiece for Ann's table, and brought it to her house today. As the week moves on, I promise to take pictures and post them. I had the opportunity to spend some time with Ann's son today. Michael and I were in the car together and he was telling me about one of his DS games. In fact, each character he showed me in the game, made me laugh. Mainly because they are funny looking, and it is hard to tell whether these characters are animals or people. I had Michael laughing as well because I renamed all the characters in the game and by the time I was finished, even Michael was seeing these characters differently then how they were presented. The fun did not end there. Michael then asked me what Zen was. I had to think about it but then recalled that it is a Buddhist philosophy asserting that enlightenment can come through meditation and intuition. Michael found that interesting, and I asked him how he thought one could get this kind of enlightenment. His next line had me practically driving off the road. He said... how about getting it at CVS! He was joking, but it was the way he said it that truly made me laugh!
I received a lovely e-mail today from one of my former students, Tess. I have taught hundreds of students over the years, but she was definitely very memorable because of her skills, ability, and sensitivity. You can see her message to me today below. Tess had to take time away from reading the blog. I am sure a part of her felt bad doing that, and perhaps perceived this as not supporting me. Nonetheless, after a period away she did return to being a daily reader. I appreciate Tess' honesty and I agree with her, that what I am writing about is painful to hear, and it can rock your world and everything you hold dear. I admire her courage for telling me this and I admire her even more for knowing that she needed a break to regroup so that she could return anew to give further support.

I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "It sounds like the plans for the march are coming along well. I am looking forward to being a part of the march again this year. You and Peter are a very strong team; together you can do so much and it is lovely to hear how you use your complementary skills. Many thanks to Ann and the planning committee in advance for all they have already done and all that is yet to come with respect to the march. I hold you gently in my thoughts."
 
The second message is from a mom I met only once at Abigail's dance recital last summer. In fact, Chris came up to me at the recital and gave me a huge hug. She wanted to thank me for doing what I do. She never met me before that day, and we haven't met since, nonetheless, I am deeply touched by the fact that Chris reads our blog each and every day. Chris wrote, " I have wanted to write for awhile but just haven’t found the courage to write. But today was different for me so here goes. I want you to know that you are in my thoughts and prayers. I want you to know how I look forward to reading the blog and how this has become a part of my morning routine. I didn’t know Mattie but Mattie and your family have become a part of my life in a very special way. Your family warms my heart. (You are genuine and real) There are certain times in my day that make me think about Mattie and I thought you should know. I was watching the Country Music awards last night and Toby Keith and Miranda Lambert both sang songs that remind me of Mattie. Also, my daughter went to RCC and I was going through some of her art work recently and saw that she was the moon sign one year at RCC and it made me think of Mattie. There are many more ways that Mattie has touch my life but one last one is my daughter and I were traveling to visit my family and while driving we had this long conversation about all kinds of things and some of the discussion was about the upcoming walk, how I knew so much about Mattie and why Mattie had to die. The conversation wasn’t easy but it was real and again it just warmed my heart knowing that this boy has touched my life in such a special way. Also, I want you to know how amazing I think you and Peter are for allowing us to join you on this journey and how you both have given me strength in dealing with some difficult circumstances. I hope you don’t mind me sharing this with you but I thought you should know how you all have touched my life."
 
The third message is from my former student, Tess. Tess wrote, "Not a day goes by that I don't think of you with welling emotion. After taking a short hiatus from reading the blog in order to try and calm my own anxiety around death, I am back to reading it daily, and am so appreciating the beautiful and precious pictures of Mattie, your tender descriptions of moments shared, opportunities lost, and the daily battles and small victories you face. I continue to be in awe of all you manage, and of the grace and heart with which you articulate it to those who love and care so deeply about you. It was such a pleasure to see you at GW a couple of weeks ago; when I heard I could have an opportunity to say hello, I nearly tripped over myself writing back to Honey immediately that YES I would love to come. Having you share your experience has so intimately deepened my compassion for others' tragedy and my desire to dedicate my life to improving the circumstances of those in need. I am hoping to come to the second Mattie March, and hope we'll have further chances to interact soon. I struggle greatly with synthesizing Mattie's death and your pain, as I know many of your readers must - it is such an overwhelming, unjust, cruel and unthinkable situation. And imagining what your world must be like if the loss of Mattie is affecting me this much just makes it all the more heart-wrenching. Tears take over when I reflect on your loss, and I wish the warmth and love with which I surround you in my mind and heart could bring some real comfort to your day. Whatever love is capable of doing, I know that your love for Mattie, and the outpouring of love so many feel for your family, is bound to produce miracles of one sort or another. I know it will never be the one miracle that was your greatest wish, but I know there are some powerful forces at play here which will no doubt move mountains."

Sunday, April 18, 2010

Sunday, April 18, 2010

Tonight's picture was taken in July of 2009. Mattie, with the help of Peter's parents, made me a three dimensional birthday card. They all knew how much I loved lighthouses, so out of paper and tape, they constructed a replica of Hatteras Light in North Carolina. As you can see Mattie was very happy to give me this creation (this too sits in my living room!). It is so hard to believe that just two months after this picture was taken Mattie died. In fact, Peter told me tonight that Mattie has been gone for 222 days. Peter counts in days, and I count in weeks. When Peter told me this fact, I was simply stunned. I can't believe Mattie has been gone for so long, and yet this loss and its feelings are so very fresh and so very real.

Poem of the day: Just Because by Raivennette

Just because I no longer
stand in front of your eyes
doesn't mean you can't see me.
Close them,
I am there.
Just because I no longer
answer when you call my name
doesn't mean you can't hear me.
Speak softly, listen carefully,
there is my voice.
Just because I can no longer
touch your hands
doesn't mean you can't feel me.
Hold on to another,
my arms are there.
Just because I am no longer there
to show you I love you
doesn't mean my love is gone.
Place your hand on your heart,
feel its beat.
I am there.
Know that I am with God.
Know that God is with you.
And in that we are still with each other.
Just because...

There is something about this poem that simply resonates with me and pulls at my heart strings. Just because I can't see, hear, or touch Mattie, doesn't mean he is absent from in my mind and heart. However, that is what makes this reality so incredibly sad. We are not talking about a special object of mine that has been misplaced or lost (which of course might be sad because I can't touch it), we are talking about the death of a child, my child. It is NOT right and definitely NOT fair that I am unable to see, hear, and hold my son, like so many parents can and do with their children each and every day. No instead, I am supposed to find peace in my thoughts and imagination. Well I am creative for sure, but living life in your head is neither fun, always healthy, and certainly doesn't give you the same kind of purpose, direction, and love as having Mattie physically here with me. Therefore, I find very little comfort in knowing somehow that Mattie's presence is here with me either in a cognitive and/or spiritual way.

Peter worked hard today designing the on-line registration page for the upcoming MMCF Pediatric Cancer Walk. Thankfully Peter has these skills, because that is most definitely not my forte. However, in the afternoon, Peter and I joined forces, to design the registration page's content, and also to design a Walk flyer. We quickly could see that when we put our heads together, the finished product can come out much better. So tonight we are proud to provide you links to both the Walk registration page and to the Walk flyer. Please feel free to pass these links and flyers along to your friends and colleagues. The grassroots efforts of publicizing this event was extremely helpful in making last year's March for a Mattie Miracle so successful. We need your support again this year, and thank you in advance for your efforts. These links can also be found on the blog's homepage, so you won't have to reference tonight's posting in the future.

MMCF Pediatric Cancer Walk Flyer
https://www.mattiemiracle.com/uploads/MMCF_Cancer_Walk_Flyer_2010.pdf

MMCF Pediatric Cancer Walk Registration is NOW OPEN:
https://www.mattiemiracle.com/Cancer_Walk.html


I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am so glad you got out yesterday to enjoy the beautiful weather. What a perfect day to tour the gardens at Hillwood and how lovely of Debbie to think of it. Although it sounds like everything at the house and gardens was carefully planned by Marjorie Meriweather Post, there were some things in the house and gardens which seemed out of place. Perhaps in a way it was meant to be that way. When everything seems to be perfect, we cease to appreciate what is there; we become "immune" to it. When something is different, out of place, we get our focus back. We are biologically programmed to be this way. Perhaps she appreciated the things that matched perfectly more because of the things that did not. Sometimes we appreciate what we have because we have seen or experienced something we don't want. One of my previous supervisors always told me was that it was as valuable to take note of what you did not want to do as it was to note what good things you could duplicate. What I am trying to say with this is that you have so many choices ahead of you, both personally and with the foundation. Sometimes when you are overwhelmed with those it is helpful to start with what you don't want rather than trying to choose what you do. As always, I hold you gently in my thoughts."