Wednesday, January 20, 2010

Wednesday, January 20, 2010

Tonight's picture was also sent to me by Susan, a staff member at Mattie's school. It was taken during the lower school's field day in 2008. Mattie is the boy with the green sweater, on the right hand side of the picture. I am so happy Mattie's school sent me these wonderful photographs which document the happy and fun times he had, these are memories that I will cherish.

Poem of the day: Roller Coaster by Charlie Brown

The roller coaster I rode

With cancer as my co-pilot

Has been replaced by grief

And the ups and downs continue

I alternate between

Intense response to crisis

Or else I am unable to respond

And in intense shutdown

I am searching for a place

Of calm, of serenity

Where I can find the space

To breathe, to think, to focus

Perhaps that time will come

When the path becomes level

And grief only the occasional companion

But that time is not yet

Until then my friends

Bear with me and help me

Stay the rocky course

To a place of hope and healing

My friend, Charlie, wrote tonight's poem. "Roller coaster," reflects how I feel on any given day since cancer has entered my life. Mattie's cancer has deeply affected the person I am, it clouds how I view and feel about myself. Not to mention my outlook on the future. As the poem mentions, I am desperately looking for a place of calm and serenity. This may not be an external place or space per se, but instead, I would love a day of internal serenity, rather than the inner turmoil I swim through just to function on a daily basis.

I had the opportunity to visit two nursing homes today with Ann. As some of my readers may know, I have a deep care and concern for the older adult population in our society, along with their family caregivers. This affection may be the direct result of growing up with my maternal grandmother, who lived with my parents and I. My grandmother was like a second mother to me, and we spent a great deal of time together. She was a special, charming, and loving individual, who I am quite sure did not have a mean bone in her body. Walking into the nursing homes today, reminded me of the day my mom placed my grandmother in a nursing home. This was a very difficult decision for my mom, but my grandmother had suffered a massive stroke, which left her partially paralyzed, unable to swallow, read, and with a change in personality. Though my mom cared for my ill grandmother at home for over a year, my mom became very sick and was hospitalized as a result of her intense caregiving role. Therefore, my mom was unable to care for my grandmother at home. Checking my grandmother into a nursing home with my mom, was another hard thing to witness in my life. I remember so many emotions that day, and landed up yelling at the nursing home administrator.

Walking into a nursing home is another reality check that everyone should have in life. In fact, if I was an educator of young children, I would make visits to nursing homes a mandatory part of the curriculum. Children have a way of breathing life into these drab and lonely facilities. As you enter most nursing homes, you usually will find some residents at the door, who are desperately looking for love and attention from an outsider. Typically many of these wonderful individuals are forgotten by their loved ones and society as a whole. As I work with older adults, I always try to imagine what they must have been like when they were younger, I imagine the experiences they must have had, and what they have seen in their lifetime. But the humbling part about visiting a nursing home, is that I can't help but reflect that..... there by the GRACE OF GOD GO I.

This evening, I had the opportunity to visit with Mary and Mike (the friend I was telling you about who has been ill). We had dinner together and our conversations are always lively. Mary and Mike were valuable members of Team Mattie, and they are another fine example of the friendships we have cultivated thanks to our special seven year old. After dinner their girls were playing on the computer, and they went to one of Mattie's favorite websites to play a game. I remember these games, the sounds of the website, and the characters in the games, as if I played these games yesterday. As a parent, your interests become the interests of your children. You watch their TV shows, play their games, cook their favorite foods, read their books, and the list goes on. However, on September 8, 2009, the interests that I cultivated for 7 years also died. In a way, it leaves me floundering now, as I struggle to reinvent or find myself somehow. Certainly hearing and seeing the girls playing on the computer tonight could have made me sad, but instead, the opposite happened. It reminded me of all the computer time Mattie and I had with each other. It reminded me of his laughter, his inquisitiveness, and his desire to sit on my lap and have me right next to him as he played.
 
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "You have become accustomed to living with adrenaline and cortisol at levels none of us live with around the clock. That changes your body and makes it less sensitive to outside stimuli unless that stimulus is intense. It takes time for the body to understand that it is no longer living in crisis mode, that pumping hormones to push up blood pressure, speed up response time and all the other things that go with response to threats are no longer needed. When you are not intensely focused you feel "flat" because it feels strange without the high levels of stress hormones. This is a normal reaction for anyone who has been through a long term crisis whether it is a prolonged illness or a physical threat that lasts a long time. Perhaps it would be helpful to "retrain" your body through yoga or relaxation exercises just as you are starting to retrain your focus with reading for the book club. I will tell you as a former medical person that although the nurses become attached to all their patients to some degree, there are always a few who really capture your heart. It was very clear that Mattie was one of those for the nurses and staff at Georgetown. You and Peter won a place in their hearts as well for your devoted care to Mattie and your willingness to connect to the staff as well. Although you wrote that you learned from Mattie's illness and death the true meaning of love, we would all have spared you this lesson if we could have. I wish you as always some space in which to breathe, reflect and just be. I hold you gently in my thoughts."

Tuesday, January 19, 2010

Tuesday, January 19, 2010 -- Mattie died 19 weeks ago today, or 133 days ago.

Tonight's picture was also sent to me by Susan, a staff member at Mattie's school. The picture was taken on November 11, 2007, in Mattie's kindergarten classroom. Mattie and his table buddies (from left to right: Elizabeth, Claire, Mattie, and Cameron) were preparing sandwiches to distribute at Martha's Table, an organization dedicated to fulfilling the needs of low-income and homeless children, families and individuals in Washington, DC. I had the opportunity to go with Mattie's classroom to Martha's Table, and it was an incredible experience to see four kindergarten classrooms actively helping out Martha's Table staff and working collaboratively. I never travel WITHOUT a camera in my purse, and Mattie's teacher asked me to be the photographer for the group that day. I had a wonderful time capturing that happy moment and I am glad that whenever a parent was needed to do something in Mattie's classroom, I tried to help. I can now look back on all we did together with satisfaction, because unlike other parents, I wasn't allotted a lifetime to make memories with my child.

Poem of the day: A Mother's Pain by Liz Hayward

I am numb.
I feel so empty
Like a hollow walking form.
Then at times I feel
As though my chest will
Burst wide open and all
The hurt and pain
Come spewing forth.
Will it ever end?
He was my first born.
[cancer] took his life
And shattered mine.
His ashes lay along
The mountain side.
A bright star shines
From the heavens.
It symbolizes him.
He looks down
And whispers: Mom
Everything will be fine.

It is another Tuesday, and being a Tuesday it marks the 19th week that Mattie is gone from our lives. I count our loss in weeks, and Peter counts our loss in days. Mattie has been gone 133 days to be precise. As many of you know Peter and I have Mattie's ashes at home with us, in a beautiful Italian made music box. A box made in Sorrento, Italy, a place that holds great significance to me. I spent many summers growing up in Sorrento, carefree and happy, and it was my hope some day to share that journey with Mattie. Since I was unable to, I thought it would be fitting to lay him to rest in a box that is made in what I consider a magical and breath taking place. Since Mattie's death, I continue to place different objects on top of his box. At the moment sitting on his box is a model magic hand and foot print that Linda, Jenny, and Jessie helped to create in the PICU, the day Mattie died. I have also added one praying crane on top of the box. My sister-in-law gave me this crane for Christmas, and since the crane was a vital symbol to us throughout his treatment, I felt it was fitting now to sit on his box, in hopes of giving him peace, happiness, and freedom from pain. I debated what to do with Mattie's remains, and frankly I still don't know what to do with them. In fact, they may follow me where ever I live, because to me it is important to be able to visit him whenever I want to.

I had the opportunity to spend part of today with Ann. In the morning, while she was running chores, I just stayed in her house and read the book that was selected for our book club. This is a historical fiction novel, that has captured my attention. The main character is dealing with the loss of his wife from bone cancer, and this man is also dealing with a host of other issues that have scarred and shaped him. On some level it is impossible not to identify with this man, and I am intrigued to follow the story. I can't say this is true for many of the books I read, so this has been a pleasant surprise. I still have trouble concentrating, and at times my mind wanders while I read, but I am able to get back on track rather easily, because the story is compelling. I met up with Ann and Alison for lunch, and in a way, my relationship with them is evolving. Keep in mind that in the past, when I met with Ann and Alison, there usually was a Mattie crisis and we would meet to brainstorm the next steps. Crisis, per se, no longer brings us together, but I am quite certain Mattie's crisis solidified a foundation of friendship that I am only opening my eyes to now.

As I was talking to Ann this afternoon, I came to the realization that in order to feel somewhat connected to the world and to feel alive, I need to have a crisis. Or at least a level of intensity now that keeps me engaged and focused on a task. Logically this is a direct aftermath of living in crisis for over a year, and then losing Mattie. It is almost as if my body flipped a switch and I am left with two modes of functioning, crisis or intense shut down. Needless to say, it is like riding an emotional rollercoaster, and I wish I could just stop the ride.

Tonight Peter and I had the wonderful opportunity to have dinner with Debbi, our Sedation Nurse angel. Mattie was deathly afraid of PET scans and MRI machines. His initial doctor thought he could do these scans without sedation. Clearly this doctor did not understand the fear a six year old experiences after initially being diagnosed with cancer. Linda (Mattie's childlife specialist) called Debbi into a scan appointment one day, and Debbi saw the fear and anxiety exhibited by Mattie. Mattie was so frightened, that he jumped off the table, and was having a tandrum on the floor. Of course, there I was on the floor right next to him, pleading with him and trying to get him to calm down. This was enough for Debbi to see. After that point, when we requested sedation for scans, we were accommodated, no questions asked. In addition to scheduling all sedations for us, Debbi and I also became friends. She saw the hell we lived day in and day out, and was there as an incredible support and ally. After receiving bad news, which happened a lot throughout the year, Debbi would always give me access to her sedation room after hours to escape from the PICU. But in the end of Mattie's life, Debbi was instrumental. She coordinated sedations for every cyberknife treatment, for the placement of his NG feeding tube, and also allowed me to wash him while under sedation. That may sound trivial, but Mattie was in so much pain, that without sedation, I couldn't clean him. Debbi did not earn the title, "angel" without merit!

While talking to Debbi tonight, I cried several times. Debbi and I have this kind of rapport, where expressing how I feel at any given moment is understood and appreciated. Debbi explained to me that she and many of the HEM/ONC nurses feel very connected to Peter and I. I assumed this happened with every patient and family, because in my view, these women are just that special. This is not their job, they are the job. Their love, empathy, and skills define them, the environment, and how they connect with their families. To me these nurses weren't our nurses in the end, they were our family. They suffered with us, they cheered for us, and they faced things that most would shy away from. However, tonight, I could see that my feelings weren't one sided. That our nurses love us too, and that when they look at each other in the hallways now, they only need to smile at each other, and they instantly know that they are reflecting and thinking about Mattie. What can I say, I am DEEPLY, DEEPLY touched! Touched because Mattie was more to them than just a patient, and in the end our love and respect for one another did go two ways. I am left forever changed by this whole cancer experience, and I have learned through Mattie's death, the true meaning of love.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "My instructor said yesterday that most events (bar the really terrible ones, death, disaster) are how we label them. A traffic jam is therefore not bad unless we decide it is, or it can be a chance to sing along with a favorite song or have a conversation with someone you love. That's how I see your walk on Roosevelt Island; it is what you make it. It can be a walk down a positive memory lane or a negative experience. You still have the ill Mattie in the forefront of your mind and perhaps you need to travel the places where the memories were of a healthy Mattie to eventually replace them in the immediacy of your thoughts. There is no chance you will forget Mattie; none of us who have been a part of this will ever forget Mattie but hopefully, eventually the memories will be more of the happy ones and less of the latter very painful ones. Today as I practice I wish you a space of serenity and something that triggers positive memories of Mattie for you."

Monday, January 18, 2010

Monday, January 18, 2010

Tonight's picture was sent to me by Susan, a staff member at Mattie's school. This picture was taken on May 29, 2008, at the Kinder Garden ribbon cutting ceremony. I remember that day distinctly because Mattie came home very excited. He told me he helped to actually cut the ribbon at the ceremony. Naturally I don't know if that is true, but he was very proud of the garden his class planted and was happy that there was such an event to acknowledge its establishment. As you can see, Mattie is in the front row, all the way over on the right. Standing right next to him is Charlotte, and Abigail is the next girl over. Behind Abigail, you can see a lady with a light blue suit jacket and brown hair. This is Joan Holden, Mattie's head of school.

Poem of the day: 4 Blocks By Anthony Portillo

Some of the best memories in my life are of the time I spent with you
Just holding your hand 4 blocks while I walked you to school
Full of wonder you were, what’s that and why
And holding you tight when sometimes you would cry
I can’t make sense of this tragic twist of fate
To be with you again I’ll just have to wait
I want nothing more than to hold you and tell you its alright
To comfort you and keep you safe even for just one more night
The only image I have in my head, is of you safe and warm in your bed
If I had one wish it would be ….4 more blocks
For you and for me

It is interesting to me that when you lose someone in such a tragic way, that at times you become so desperate that you land up bargaining with the terrible situation. For example, asking or begging for "four more blocks," as is the title of tonight's poem. I do understand the sentiments of the poem, but I also understood the tremendous pain Mattie was in as he was dying. There is no way I would have wanted him to suffer four more minutes with this pain, yet as a parent I am very conflicted about what I am saying. Conflicted because in essence the only humane way we could put a stop to his pain, was to say good-bye and allow Mattie to die. The poem says, "The only image I have in my head, is of you safe and warm in your bed." Well naturally this is NOT my image of Mattie, or at least this is NOT the current image that gets replayed in my head. The images of Mattie are........ Mattie battling with cancer, Mattie in pain from cancer, and Mattie dying from cancer. It will take some time to come to peace with those images, and eventually be able to reflect on the healthy and happy Mattie that existed at one time.

It was a lovely weather day in Washington, DC (I qualify this for those of you who know me, it wasn't balmy, but it wasn't freezing either, so I was grateful for that). The sun was shining, there wasn't a cloud in the sky, and it was around 50 degrees. Peter and I decided to take advantage of this, and we walked on Roosevelt Island today. Naturally it is impossible to walk on the Island without thinking of Mattie. It was a place we ventured as a family often, and even today, we commented on all the sticks Mattie collected on the Island over the years and brought home. We literally had quite a stick collection at one time. Peter relocated the collection to the gardens in our complex, but Mattie was indeed a collector and a sentimentalist, like his mother. As we were walking today, we saw many families with little boys who passed us. One little boy was sitting on his father's shoulders, carrying a stick. It did not take a rocket scientist to know what Peter was thinking at this point. Part of the issue with grieving, is we are grieving many things, not only the huge loss of Mattie, but the huge hole that this loss leaves us with. We are no longer parents, we have no one to nurture, help guide, and to emotionally provide for and connect to on that deep level. We are grieving our roles and what this role could provide into the future. So in essence we are grieving our present and our future on any given day. At some point today, Ann called me and expressed her concern for our walks on Roosevelt Island. I certainly understand her concern, and I am sure it must seem odd that we continue to venture back to the Island. But despite the pain that it sometimes brings, it also helps us reconnect with our thoughts and memories of Mattie. It gets back to a posting I wrote several weeks ago, in which I wrote my biggest fear is forgetting Mattie. Forgetting sometimes is even more painful than the grief itself, which is why I am always drawn to Roosevelt Island. I really did not reflect on that, until Ann asked me.

I received a wonderful and moving story from my mom today, which I wanted to share with you. Some of you may recall she mentioned receiving a White Orchid plant when Mattie died. This is a follow up story about the plant, and she included a picture for you as well! My mom's story forces you to have faith and to believe. These are things that have been squelched within me, but at the moment I still can't explain the disappearance of her White Orchid. Can you?


==========================================
The Mysterious Disappearance of the White Orchid By Virginia R. Sardi

As you may remember, Mauro and I received an orchid plant from a friend when Mattie died. We paid little to no attention to it and left home for weeks at a time and to our surprise the white orchids remained pristine and beautiful whenever we returned. We were quite stunned that the orchids could thrive despite their neglect over such a long period of time.

Our friend who was very touched by the untimely death of our dear Mattie on September 8th, though he did not even know him, made sure the plant had seven white beautiful orchids in bloom when we received it in early September, one for each year of his precious life. In the early part of November, I began to watch the orchids as if I had been directed by a higher power to observe their beauty, and sensing their spiritual connection to Mattie’s new being, I felt compelled to find the key to understanding why Mattie’s life here on earth was so brief. In the evenings before I went upstairs to bed, I was in the habit of making sure everything in the kitchen was in order, usually around midnight as I am a habitual night owl, and before ascending the steps, it became a ritual for me to look at the orchids and think of Mattie.

On November 22nd, I remember quite distinctly looking at the white orchids and having a “Mattie Moment” reflecting on his last visit to us and how much fun he had just doing “Mattie Things” and being himself before turning in for the night. I did notice that one of the white orchids looked peaked and I felt that it would fall off the plant very shortly. I sadly but realistically expected to find it on the kitchen counter the next morning.

This intriguing part of the story is really about what transpired afterwards and I leave it to the readers to help me find an explanation for the curious and unexplained circumstances that happened when I returned to the kitchen to start my daily routine the next morning. I am always the first one up and about in the morning. While busying myself with morning chores, I glanced at the orchids. There were only six white orchids left on the plant! The sick orchid was no longer there. Here is the interesting part of the tale. I searched the bottom of the pot for it and then the counter, the sink and the floor. I could not find it anywhere. I asked my husband to join me in the search and, my analytical and skeptical husband could not find it anywhere either but did not give the matter a second thought. Looking for a practical explanation, he then remarked that I had probably vacuumed the kitchen last night and perhaps the flower was in the vacuum bag. I said I didn’t think so but made him open up the bag anyway and we both searched its contents. There was no trace of a flower or any part of a flower that we could find. By now, I feel certain that you already know how my mind operates so it will come as no surprise that I instinctively concluded that Mattie had taken it with him and that I could feel his presence in this action. Mattie loved nature and when he was alive, he was forever picking up flowers whose color, shape or uniqueness stirred his imagination. It was just like the Mattie I knew to do a thing like that! To this day, I have not found a trace of that flower and I did a thorough search. You can count on that.

You might be interested to know that the other six white orchids fell over the course of the next two weeks and I have collected every one of them and created a beautiful keepsake of pressed flowers as a memento of my experience but my mind always returns to the missing seventh one. Did Mattie take it away with him and, if so, what was his message to us? In my humble opinion, I think he was trying to tell us that he is finally at peace and is now free to be the Mattie he once was. Mattie loved us with all his heart and wanted us to know that. That is why Mattie chose to symbolize his bond with his earthly family by taking with him a single white orchid, fragile, like himself, but beautiful, pure and unique!

=======================================

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Life is fragile and precious. It is difficult to live constantly with that in the forefront of our minds and so we tend to ignore that until some event brings it home to us. Mattie's life was much too short and I will always wonder what he might have become had cancer not taken him away from us. There are some days that we all need a motivator to get out of bed; unfortunately, you have far more of those days right now than the rest of us do. Judaism's most famous rabbis have always said that we are to strive to live each day as though it were our last, however, unless you are one of the holy/blessed, this is very hard to do. Perhaps, a more reasonable position is to sit down monthly and ask yourself, what is it that is really important to you and are you doing that? If you were told you had a month to live, would you keep or upend your life as it is now? If you would change it all, perhaps what you are spending the majority of your time on is not what is meaningful to you. I hope that at some point you find something that is meaningful, that makes you want to get up each day and spend your precious time. Knowing some of your gifts, I hope that teaching and/or counseling is part of that because I think you have so much to share. I dedicate the energy and serenity of my practice to you today."


The second message is from my friend and colleague, Nancy. Nancy wrote, "This week was our Ryan's 6th birthday and we were busy celebrating. I tell you this gently as I know that it was around this time that Mattie was diagnosed. It brings back such vivid memories of our time in San Diego and your wanting to get home because you were concerned about Mattie and you didn't even know what was in store for you when you returned. I, too, was saddened the day you told me of his diagnosis. The rest you relive each day. I was taken with yesterday's poem too. I found it very moving. Letting go is such a 'loaded' term. We often speak of it when discussing forgiveness. I always took exception to the term forgetting in association with forgiveness. Often they don't go together. One may forgive, as I hope you will one day with G-d, yet, forgetting is impossible especially with our children. Losing a child is something one never forgets. We have no choice but to let them go on the journey alone and that is heart breaking. It does bring us to our own mortality and the end of the poem tells us our loved one's wish, to visit and give to others when the moment is toughest as that will be a great tribute to our lost one."

Sunday, January 17, 2010

Sunday, January 17, 2010

Tonight's picture is the one I promised you from last night's blog. I received this from a staff member, Susan, at Mattie's school. The photo was taken during the school's "Artstravagenza." During this event, guest artists from the community come into the school, to have kids explore different mediums of art and to enrich their interests and skills. As you can see in this picture, the guest artist is in the background and cheering Mattie on as he leaps into the air with spirit. Susan not only sent me this photo electronically, but she made me a hard copy too which I plan on framing. Susan also commented to me that in every picture, she loved Mattie's sweaters. Mattie, like me, was a sweater person, and I would have to agree with Susan, he wore his sweaters well! To me this picture is down right breath taking, because it captures Mattie's happiness in kindergarten and his determination. Notice the fist he was making in his right hand, signifying that he was really trying hard at this activity, and giving it all his might. I try to remember the Mattie pictured here, the Mattie who could run, walk, and be a child.

 

Poem of the day: Miss Me But Let Me Go

When I come to the end of the day,

And the sun has set for me.

I want no rites in a gloom-filled room.

Why cry for a soul set free?

Miss me a little, but not too long,

And not with your head bowed low.

Remember the love we once shared---
Miss me, but let me go.
For this is a journey we all must take,
And each must go alone.
It's all part of the maker's plan,
A step on the road to home.
When you are lonely and sick at heart
Go to the friends we know.
And bury your sorrows in doing good deeds---
Miss me, but let me go.


As I read tonight's poem, "Miss me, but let me go," I must admit that it is my greatest hope that Mattie's "Soul is set free," and naturally not a day goes by where Peter and I don't "remember the love we shared." However, really sit and think about this line: "Miss me, but let me go. For this is a journey we all must take, And each must go alone." Certainly there are things about these particular lines in the poem that we may agree with, but how do you let go of a seven year old? Again, this is an academic exercise in which I am asking you as a parent to imagine sitting in my current position. I have a feeling, if you imagined saying good-bye to your children for too long, this would be a highly overwhelming and disturbing thought. If you allow yourself long enough to enter my world, these are the thoughts and feelings Peter and I live with daily. As a society, maybe, with an emphasis on maybe, we do come to peace with letting go, and allowing our departed loved ones to make this independent journey to heaven, IF the departed person lived a full life. There was nothing full about Mattie's life, and though I admit he accomplished a lot and touched many lives in his short seven years, that is still not long enough for me, and I find many discussions about grief usually evoke emotions and thoughts about an older adult dying. It is much harder to grapple with the death of a child, and even harder to let go and come to peace with it.

At breakfast, I discussed with Ann's children the timeline for their day. I explained that they were joining their dad, and taking Ann out to dinner for her birthday. What caught me off guard was Abigail asked me twice throughout the morning whether I was going out to dinner with them. In the past, I would have taken this comment as simply a fact finding mission, but today, I sensed a difference. In my mind she was asking me this because she enjoyed my company over the last day. Naturally, I don't know if this was indeed her intention, but as a person who loves to study human nature, I am relying on my gut feeling about this conversation. Despite my lows on any given day, connecting with children and people are still important to me.

This afternoon, I had the opportunity to go to a spa with Ann to celebrate her day. We were lucky that there was no one else around us, because our conversations are anything but light. We have both dealt with so much illness and death, that we freely talk about these topics, but I am very cognizant that this may not be deemed appropriate conversation by others. I think the beauty about going to a spa for several hours, is that I try to turn the outside world off. It doesn't always work, but that is always my goal. I had the opportunity to sit and chat today, drink tea, and even receive chocolate, and it wasn't even my birthday! I try to capture these more "normal" activities in my mind, because as I face each day, with the same question, "Is it worth getting out of bed?" I find I need more motivators and encouragers. I guess losing Mattie has caused me not only to grieve, but also to have a full blown existential crisis. If Mattie can die, well so can I, at any point. If this is true, which it is for all us mere mortals, then what on earth is the meaning of our lives on earth? To work 24 hours a day, 7 days a week, which causes us to lose perspective of what really is important? Of course I am a realist, I know working is vital in order to live and to support our families, but nonetheless, in the race to achieve success or happiness, I wonder how happy we really are as a society? All I can say is losing Mattie, has been a wake up call for me, one of which I rather have not had. I see life now as more fragile and that nothing is guaranteed.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "What lovely gifts to receive, more photos of Mattie and the lovely pin you described so well. I think Katharina's sharing of her dream was a lovely gift as well; thoughts of Mattie in a better, healthier, happier time. I do think it reflects where his spirit is now, freed from his disease crippled body, he runs and plays and does the things boys love to do. It is lovely of you and Peter to take this opportunity to do for others; Peter watching Mary and Mike's children and you taking care of Abagail and Katharina so Ann and Bob could have a night away. It speaks volumes for both of you, your skills as parents are such that the children all trust you both. It is just a pale reflection of the love and care you gave Mattie but let it remind you of what a great mom you are. I wish Ann a very happy birthday and thank her again for all of her wonderful support to you both through Mattie's illness and after it. I dedicate the peace and strength of my practice to you today."

Saturday, January 16, 2010

Saturday, January 16, 2010

I received tonight's picture in the mail today. Susan, a staff member at Mattie's school, St. Stephen's and St. Agnes School, sent me a CD in the mail with many wonderful photos of Mattie. I have never met Susan, but I was deeply touched by her letter and photos. The photo on display tonight was taken in May 2008, on Grandparent's day at Mattie's school. Mattie's class performed in the grandparent's day concert, and Susan captured Mattie at his best. Mattie is front and center. He had quite a smirk on his face. Most likely he spotted my parents in the audience and was making sure they were listening and focused on stage. That was Mattie! Mattie's class is featured in the front row of the picture. From left to right are: Claire, Charlotte (Ellen's daughter), Xander, Mason, Mattie, Cavin Reed, Missy, Paul (Alison's son), and Abigail (Ann's daughter).

Poem of the day: There You'll Be By Debbie Tsotaddle
You’re on every corner, turn and twist.
Every old familiar spot whispers how your missed
In our dreams we can see you soar above the sky
A free bird at last with so many left behind
When reminiscing of you, on our face a smile shall appear
Ever reminding us that in our hearts and memories you are still near
We were blessed to have you in our lives
And will always feel sorrow for the dreams you left behind
A part of you will always remain in the hearts of we
Always reminding us that where ever we are….There you’ll be.

I received two lovely things in the mail today. A staff member from Mattie's school, Susan, who I have never met before, sent me a very lovely letter and a CD of photos of Mattie. In fact, some of these photos are down right unbelievable. One in particular I will feature in tomorrow's blog. It captured my heart. She also sent me some photos of Mattie during his kindergarten class' ribbon cutting ceremony for the garden they planted. I always felt remorse that I never saw this garden in person, since Mattie was very proud of it. The photos illustrated to me Mattie's excitement over the occasion. I have to admit that seeing the "healthy" Mattie caught me by surprise, because naturally my most vivid memories are of Mattie with cancer. The photos were so meaningful, because they reminded me of the many happy times Mattie had in his life, and his contagious energy and spirit! This was a special gift to receive, from someone I never even met.

The second item I received in the mail was a lovely pin from my friend, Nancy. The pin had two hands holding a heart. Almost symbolic of my hands and Peter's hands holding onto Mattie's heart. A symbol that holds true to how we are feeling.

Peter had the opportunity to help Mary and Mike this morning. Mike was readmitted to the hospital, and Mary needed help with her girls so that she could visit him in the hospital. Peter had a fun time with Emily, who is four years old. When Emily would visit Mattie in the hospital, she always would give Peter a big greeting. She naturally seemed to trust him, and they have a nice rapport. Mary and Mike were so helpful to Peter and I during Mattie's battle, that now when they need help, we are more than happy to step in. It comes down to the fact that we were very lucky to have a Team Mattie, and it is hard to adequately express our thanks and appreciation to others for over a year's worth of support and care.

Ann's birthday is this weekend, and in celebration of the occasion, Peter and I are watching her children so that she and Bob can have a night away. Needless to say, Peter and I had a very busy day. Peter spent the afternoon with Katie and Michael, and I went with Abigail and Katharina to a gymnastics competition. At the competition, the girls got to run around, meet new friends, buy Ann a birthday gift (at one of the vendor stands), and of course eat and watch some wonderful gymnasts. We spent about three hours at this recreation center, and I think all of us got our workout. Katharina and Abigail spoke to me about Mattie during our car ride. In fact, Katharina told me she had a dream last night in which she could picture Mattie running around and doing somersaults. Abigail was surprised to hear this because she responded by saying that Mattie couldn't do somersaults. Certainly she was right when he was ill, but when he was healthy, he could. It is interesting to me that Abigail and I primarily remember Mattie ill, and yet Katharina's dream forced us to think back to the real Mattie, the happy Mattie. I wish I could have such a dream, but so far, my dreams do not include Mattie. Frankly I most likely don't sleep soundly enough to even dream.

I want to thank Tamra (our friend and SSSAS parent) for baking beautiful sugar cookies today for the children to decorate. Tamra baked cookies in the shape of a winter mitten, and she sent along frosting and all sorts of wonderful sprinkles. This got us in the mood to prepare for Ann's birthday. This evening, the girls decided to bake a cake and cupcakes for their mom. They are very excited for tomorrow, and they hope she will be happy and pleased with their thoughts and efforts.  

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I read what you said about "forgetting the jewelry" and then not finding the wind chimes when you got home. I have a different interpretation of what happened. I don't believe Mattie is moving further away from you; I believe Mattie is telling you that at some point, his spirit will be within you, not dependent on external items like jewelry and chimes and toys. I think this is his way of telling you that you are moving along in the grieving process and that eventually a permanent link to him will be within you. I am glad you and Peter are able to acknowledge each other's different grief "styles" and help and support each other; that is so important for a couple to do. I wish you a space of time today to breathe in some serenity and peace. You remain in my thoughts and daily prayers."

Friday, January 15, 2010

Friday, January 15, 2010

Tonight's picture is one of my favorites. Mattie was 10 months old, and in his "tot wheels." You may recall from previous blog postings that I mentioned how Mattie loved three things: 1) his jumper, which is a picture I featured recently, 2) his entertainment saucer, and 3) his walker (aka, Tot Wheels). Though Mattie did not crawl (EVER!), and wasn't walking at 10 months, he loved scooting around in his wheels. He could maneuver himself throughout our entire first floor, and even made tight turns into the kitchen. He had no problem helping himself in the refrigerator. I am so happy that one day when I saw him headed to the kitchen, I grabbed the camera and caught him in the middle of his refrigerator inspection!

oem of the day: Kool Aid Makes Us Cry by Alan and Debra Reagan

It may seem strange as time goes by
how such small things make us cry.
As we go through the aisles at the food mart,
little memories tug at the heart.
We see things that once brought him joy
during those years when he was a boy.
When we pass the place where drinks are displayed,
we see the many flavors of Kool-Aid™.
There is purple, red and blue
and several other food items, too.
We see Fruit Roll-Ups™ and pizzas galore,
Goldfish™, Froot Loops™ and many more.
It may seem strange throughout the years
these little innocent memories still bring us tears.
We hope you understand if you happen by
while we are shopping, if you see a tear in our eye.

As the poem indicates, grocery shopping for a parent who lost a child, is indeed challenging and at times painful. Fortunately in our case, Mattie was not a Kool-Aid, Fruit Roll-Up, or Froot Loop fan, so seeing these things for me in the grocery store produce no reaction. Mattie really did not like sweet things, nonetheless, there are plenty of things Mattie did like, and certainly going down the aisles of the store, can be like a trip down memory lane. When Mattie was a toddler, after Peter and I finally desensitized him to riding in a grocery cart (initially he hated that as much as his stroller!), he was my personal shopping assistant. He wasn't very demanding about the food I selected, but it seemed as if I couldn't get out of the store without him putting a quarter in the machines by the door, to get a small rubber ball. We have quite an extensive collection of balls, and slowly this was a habit I broke Mattie of. Thankfully! However, prior to Mattie's death, I would never have imagined how emotionally ladened a grocery store could actually be.

Two things happened today, that caused me to pause. First, each morning since Mattie's death, after I get dressed, I always put on a piece of jewelry that he made for me. Either a Mattie bracelet or a necklace creation. Today, while I was out running chores, I panicked. I panicked because I forgot to put a piece of his jewelry on. Periodically through the day, I usually land up touching his jewelry that I am wearing, almost as a subconscious gesture to symbolically try to connect with Mattie, or my memory of Mattie. Naturally forgetting to put his jewelry on was an honest oversight, but it weighed heavily on me all afternoon. It made me feel as if I forgot about Mattie in my morning routine. Sounds silly, because I will never forget about Mattie, yet, I felt guilty and remorseful. Second, when I returned home today after running chores and having lunch with Ann, I noticed that Mattie's wind chimes were not by our front door. They were missing! As many of you know, these chimes mean a great deal to me (Mattie gave them to me on my birthday, and when I hear them twinkling in the wind, I feel as if he is communicating to me somehow). When I did not see the chimes, panic set in again. I finally found the chimes, which had fallen from the wind. Nonetheless, I took these two things today as a sign that perhaps Mattie is further slipping away from me. Again, not rational, but there is a lot of irrational behavior and feelings associated with grief. It almost plays tricks on your mind, and in a way, as a survivor of the cancer experience, I feel guilty that I survived and not Mattie. A had an opportunity to tell Ann this story, and her response to me was that Mattie "is not slipping away, he is in our friendship." I couldn't have asked for a better or more meaningful response to my fears today.

I decided this afternoon to sit and read the new book I purchased. Mind you, I still haven't finished reading the other book I started, but I wanted to get a jump on reading the book that Ellen selected for our book club. The book captured my attention within the first chapter. The main character's name is Henry. Henry has lost his wife to BONE CANCER, after being her caregiver for seven years. His wife's name was Ethel, and in the first chapter discusses how the death of his wife has affected him. In particular, the following passage from the chapter resonated with me: "What his son, Marty, never fully understood was that deep down there was an Ethel-shaped hole in Henry's life, and without her, all he felt was the draft of loneliness, cold and sharp, the years slipping away like blood from a wound that never heals." I couldn't have said it better. I totally get this, and feel like I am walking around with a Mattie-shaped hole in my life, a hole that is invisible to others, but very real for Peter and I, and it can never be filled.

This evening, Peter and I went out to dinner. We sat and chatted about our day, and it seems like we really have over a year's worth of things to talk about, process, and try to heal from. Weekends for us are very difficult, and there are times when it really does feel like Peter and I, against the world. We are living in a world that understands our loss, but doesn't live our loss like we do. It could be very easy for such a profound loss to pull us apart as a couple, but we respect each other, and the fact that we are going through the grief process differently.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Today is the first new moon of the New Year. That's what my instructor said this morning and instantly I thought of Mattie and you. If my thoughts turn so readily to him, how much you must be reminded as you go about your day. I know it is really tough, I read it each day in your blog but I believe with all my heart that you will find a way to make it through to a place of hope and healing. I know the loss will never leave, the scars will always remain but I believe you will find a way to make your life meaningful as a way to honor what Mattie was in this world. I also believe as Betsy said yesterday in her posting to you that Mattie is proud, even now, to call you, "mom" just as many of us are proud to call you friend and teacher. May your steps today lead you to a place of peace and serenity, even if only for a short time. I hold you gently in my thoughts."

Thursday, January 14, 2010

Thursday, January 14, 2010

Tonight's picture was taken when Mattie was a year old. Mattie was desperately trying to learn to walk by that point, but he needed extra support and time. Mattie began to walk independently at 16 months of age. The irony is that at 3 and 4 months of age, we could hold Mattie under his arms, and have his feet touch the ground. When we did this, he would literally start walking (almost running!). He would put his feet firmly on the ground and just started putting one foot in front of the other. Naturally he wasn't strong enough to really walk without us, but he loved that motion and would do this over and over again. Developmentally I know babies can have a primitive walking reflex, but in Mattie's case his desire to repeat this motion over and over again gave him great joy and it thrilled us to see his enjoyment.

Poem of the day: The Door By Donna Weigel

I dreamt of you last night and awoke
with overflowing pain and fresh understanding...
something like an epiphany of the heart;
Funny how we go through life
not seeing where we really are,
sometimes standing in the middle of a golden moment and not recognizing it;
When you became sick I began to see,
that in life there are doors we must open;
There came a knock at your door one fateful day
and when we opened it we found an insidious serpent....cancer;
We drew our mental swords and began to fight;
In the days and months to come we opened many doors,
always together because we loved you so...
Fear knocked often, gnashing its horrible teeth
and biting our hearts;
At times it overwhelmed us all,
but it also bound us inextricably together;
Some of us found Faith on the other side of that door,
and we discovered what a slippery slope we had to climb;
Some precious days Hope would visit us,
always in the form of a frail, small child;
We clung to him and begged him to stay,
but he slipped away like the ocean at low tide,
receding into the blue distance till he was no more than a small speck on the horizon;
We lost our fight to save you...
when too soon we opened the door and found Death waiting there for you,
along with his whole cast of characters;
With him came Grief, Despair and Utter Sorrow,
blotting out the sun which had shown so brightly while you were here with us;
I found a deep well of sorrow within my soul that day,
As I held your hand and watched you,
drifting off into the weary arms of Death,
your light slowly going out...
Though some time has since passed
and eased a small fraction of my pain,
yet the smallest of reminders draws up a bucket
from that deep well within me,
its cold contents spilling out to cover me in fresh sorrow,
I miss your face,
your warm embrace,
your love will never leave me...

Charlie sent me this poem today, and as I read it, I began to see it resonated strongly with me. Mattie's cancer journey and death has been a series of "Doors." Naturally when life presents you a door, you either turn around and walk away, or you open it and walk through. Unfortunately when cancer came knocking, we had no choice, we had to walk through this door. There was no question about this door, because we had to attempt to do whatever was earthly possible to try to save Mattie's life. But throughout his 13 month journey, many doors presented themselves. Many of which I hoped never to have to face ever in my life! Moving forward with each stage of treatment was cumbersome and difficult, and it seemed with every scan result, more depressing news was revealed. Yet despite what we had to face, moving through each of these doors, was a family journey. Mattie, Peter, and I moved in tandem, without skipping a beat. Going through this crisis brought us closer together in many respects, and watching Mattie greet each challenging day, was indeed the purest picture of HOPE. There were days, I would look at Mattie and wonder how on earth he survives, handles, and copes with all that we ask of him. His treatment was toxic, debilitating, and disabling. It was through his frail and disintegrating body, I saw his true inner strength and character shine. Yes I was helping Mattie each day, but he was also helping me. His smiles, hugs, and trust were powerful motivators. All the doors we had to walk through make his death extremely tragic, because, how does a bright spark, who fought Osteosarcoma with amazing spirit and courage, get extinguished so quickly? I continue to grabble with this question, and most likely will for the rest of my life.

I met Ann for lunch today, and we had a chance to catch up with each other, since she was away earlier in the week. Today was her dad's birthday. The first birthday she was unable to celebrate with him since he died in October. I can't even fathom how this feels, and I do try to empathetize, especially since I am already concerned about how I will feel when April 4 (Mattie's birthday) comes around. There was a feeling of sadness about the day for me, and though I did not know Ann's dad very long, our time together was intense toward the end of his life. Helping someone die is a very powerful experience, and as he was dying, I could see he wasn't worried about himself, but his daughter. He wanted to know that Ann would be okay, and in his more lucid moments, wanted me to promise to look after her (not that she needs looking after, she is very self sufficient; but once a parent, always a parent, we naturally worry about our children no matter their age!). Ann's dad, Sully, knew how much Ann helped me with Mattie, but he also wanted to acknowledge me. Sully appreciated my help in the end, and expressed his gratitude especially since I had just lost Mattie. Sully was a very honest individual, and had no problem telling you how he felt, and certainly as he was dying, I wanted him to know that my friendship with his daughter was not time dependent. That it wouldn't expire after I helped her care for him, that seemed to comfort him. I will never forget the dialogue we had that particular night (sitting in a very dark room), it remains very vivid in my mind. It seems fitting on his birthday, that I share with you the special man that he was, he deeply loved his daughter, and the kindness he showed me helped me greatly during those tender weeks after Mattie's death. You must also remember that Sully and I had another commonality, we both lost our sons to cancer, and he understood the depths of this pain all too well.

When I got home this afternoon, I felt physically exhausted. So in those moments, I know I have to retreat. I went to lie down and regroup. Peter had a late night at work, so I started the blog earlier in the evening. As I was writing, I was deeply reflecting on Charlie's poem that is posted tonight. It somehow expressed everything I was feeling, and therefore while reading it I began to cry. Typically poems do not move me to tears, but this poem was about the cancer journey, and somehow captured the depths of sadness that Peter and I live each day. It is in moments of sadness, as I told Ann today, that I can't see a way out of the pain. That I feel the pain will always be there, and perhaps this is the best life has to offer me into the future. Ann always tries to acknowledge my feelings, and allows me to feel however I need to feel, but she also works hard at providing me with some hope. She was our Team Mattie coordinator and was always my angel of hope during the ordeal, but now her role from my perspective is much more complex. How do you help me pick up the shattered pieces of my life? I don't know, this is a door I am still trying to find!

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am so glad yesterday was a positive day for you. I think joining a book club would be a nice way for you to forge a new connection with some people who were originally connected to you as a mom because of Mattie's illness. Although you are worried about your ability to concentrate, the pace of a book club will usually give you plenty of time and this is not technical material that requires such an indepth level of understanding anyway. It was nice that you and Peter had an evening with lots to talk about; I know that during Mattie's illness you both got out of the habit of talking and sharing because he could not handle the sound. These are all very positive steps and tell me how hard you are working to process your grief. I hope you continue to find bright spots in your day to help see you through the grey times. I hold you gently in my thoughts."

The second message is from a former student of mine. I have had the pleasure of seeing Betsy twice at the ice skating rink that Ann takes her daughter to. Betsy wrote, "I just read the blog and wanted to express what a wonderful, strong, giving, compassionate and amazing woman you are. You continue to give to others in need, even when you are in great need yourself. I know this is an unfathomably difficult time for you, yet you continue to go to children's birthday parties, help those who are sick, help upcoming professionals, etc. Please recognize the gifts that you have and be proud of yourself. You may not recognize it because you are so buried by pain right now, but your gifts are shining through - the same gifts of compassion, empathy and creativity that Mattie inherited from you. And he continues to be so proud to call you mom. I hope you have some happy moments today."

Wednesday, January 13, 2010

Wednesday, January 13, 2010

You may be asking yourself, why is Vicki posting this picture of Mattie? Mattie was six months old in this picture, and I am sharing it for one main reason. I want to show you Mattie's reaction to being in a stroller. He absolutely HATED it. Mattie did not like being strapped in, he did not like the feeling of the stroller, and this look of pain in his face captures how he felt about the entire experience. I tried to make him comfortable in his stroller, I tried all sorts of toys, I tried moving around at different speeds and looking at interesting things, forget it! Mattie was NOT a stroller baby, and by the time I finished, we must have gone through five strollers to find the right one, until I realized I had to admit defeat. Naturally, without a stroller this initially limited our ability to get around, until Peter's parents gave us a back pack for Mattie. Mattie loved riding on Peter's back, and this is basically how Mattie was transported through most family outings.

Poem of the day: Scott Tallman says: In response to my poem (yesterday's blog posting), my Mother and Father wrote a poem for me. Here it is: To Scott from Mom and Dad

We read your poem with sorrow,
As tears fell down our face,
We read your poem with sadness,
For no one can take his place.
We read your poem in silence,
Thinking of things that might have been,
If only we would have had the chance,
To do them all again.
There will be a time for your heart to mend,
We know not where, we know not when,
You will kiss your son and hold his hand,
And then you will know you are the same again.

I had a busy social calendar today and in fact, I am not sure when the last time was that I had back to back visits with friends. Social interactions for me can be hard and challenging, but I consider it a good sign that by the end of today, I did not want to change into my pajamas and shut out the world. That is progress. I went out to lunch with my friends, Ellen (Charlotte's mom) and Christine (Campbell's mom), to celebrate Ellen's birthday. We had a wonderful culinary experience, since we went to a restaurant with a tasting room. We talked about different things from travel to reading books. In fact, Ellen suggested that we start our own book club. I have never joined a book club in my life. In fact, because I consider myself a perpetuate student, most of my readings have been technical reading. Or of course reading my students' case studies and term papers. I really never made time for pleasure reading in my life. Maybe occasionally during the summers. So the prospect of a book club is both intriguing and yet daunting. It is daunting to me because my concentration is not what it used to be. So much so, that I can't really focus on reading anything. In fact, I am still trying to read the book I told you about, which I started a few months ago. It is the after math of Mattie's death which has affected some of my abilities. My abilities to concentrate and my abilities to multitask are both dramatically affected, and it is my hope in time, this will change. But in the mean time, I can't beat myself up about these changes within me.

Later in the afternoon, I met Margaret for tea. Margaret was Mattie's first preschool teacher at Resurrection Children's Center, and pretty soon after I met Margaret we became friends. We naturally clicked and as I always tell her, she came into our lives at the right time. She helped Mattie gain confidence in himself and his abilities in preschool, and she gave me the necessary support I needed to deal with a challenging toddler. Time with Margaret has a way of flying by, so much so that two and a half hours went by, and it wasn't noticeable.

When I got home this evening, Peter and I had dinner together and I was actually talkative. Mainly because I had so many stories from the day to share with him. So our conversation was lively, which for me by the end of the day is a rarity! However, as we finished dinner, Ann called me and told me that Mike (the RCC dad who I have told you was ill and hospitalized for almost two weeks) wasn't feeling well tonight and had spiked a fever. We were afraid that Mike was going to land up in the emergency room this evening, and someone needed to be at home with their children. So I quickly packed a bag, in case I was staying over night, and hopped into the car. Remember I live a packed life, since I have yet to unpack from our hospital stays, so mobilizing forces for me is SO simple. I am happy to report that Mike's fever subsided with Tylenol and at the moment is stable at home. One thing that was very evident to me though is that when you are sick, having company and outside stimulation are crucial. Being ill is very isolating, and some times diversions can be a very healthy and necessary thing. I know that when Mattie was in the hospital, playing in the childlife room, or working on an art therapy project helped take his mind off of how he was feeling. We as adults, do not necessarily need to play per se, but we do need companionship and emotional support. I believe that is imperative to recovery. I am happy that I could spend this time with Mike and I had a good time chatting with Mike and Mary. Not to say that our conversation helped his fever, because Tylenol was on board, but talking and connecting with another person is therapeutic in and of itself. We all need these connections. As I left their home tonight, I learned that Mary and I also like reading the same books, which was nice to learn, and each time I see Mary she spoils me with chocolate. Since she knows that is my vice!

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Yesterday was a tough day but you made it. In spite of everything you were able to get up and moving, take care of Ann's children and help someone get an internship posting and all of this with a breaking heart. Memories can be both positive and negative; I give you much credit for surviving a lot of negative thoughts yesterday. Although you did not directly address Mattie's impending death with him it is clear that he knew. I am sorry that you did not get to have a conversation that would have allayed some of your fears but it would not have changed the outcome. I wish you a day of happier memories and a bit of serenity somewhere in your day."

The second message is from my colleague and friend, Denise. Denise's daughter, Marisa, was one of the people who helped me this summer care for Mattie, so I could take an occasional break. Denise wrote, "Marisa and I continue to be daily readers of the blog and we hold you all in our hearts every day. I am in awe of your strength and courage as you share your journey through unimaginable grief and pain with us. I have especially enjoyed seeing the pictures of Mattie as a baby. What a little cutie pie!! It is also clear by looking at his face how much you and Peter love him and that he knew that even as a baby. As for the doctor telling you those smiles were gas-pshaw. The new brain research says that was Mattie mirroring back the love he saw in yours and Peter's faces, as well as the faces of everyone else who met your adorable little boy!! Take good care and remember that there is a whole community out here that stands behind you each and every day, supporting you with gentle, loving thoughts and prayers."

Tuesday, January 12, 2010

Tuesday, January 12, 2010 -- Mattie died 18 weeks ago today.

Tonight's picture captures Mattie eating rice cereal. It was the first food he was introduced to, and loved it. He took to certain foods immediately and his beaming smile was excellent feedback. Mattie never flung food, but his facial expressions were priceless especially when you put food in his mouth that he despised. It was an absolute look of pain, and the food would come dribbling right out of his mouth. Applesauce was a big culprit. Mattie did not care for it at all! The irony of this picture is that it shows Mattie at four months of age, happy and physically healthy, and loving food. However, through the process of cancer, Mattie became as skinny as a rail, and toward the end absolutely NO food or water were consumed. In essence we watched his body shut down and starve itself.

Poem of the day: I will never be the same again by Scott Tallman

Dedicated to all parents grieving the loss of a child.

My child was called to Heaven today
I feel as if I have lost my way
The loss taken hard by both family and friend
I know I will never be the same again…
My baby was taken with no reason nor rhyme
There must be someone to blame for this crime
My heart and soul broken this must be my end
I know I will never be the same again…
What did I do wrong God what did I miss
Can my baby still feel my very last kiss
So what am I left with how can my heart mend
I know I will never be the same again…
My mind travels back to the times we have had
So many memories now none of them bad
I thought I had covered it all but then
I know I will never be the same again…
I fall asleep crying tears pouring from eyes
That once watched over my joy and my pride
How can I go on this pain will not end
I know I will never be the same again…
A bright light then flashes I’m leaving my mind
A vision of my baby so peaceful and kind
He tells me he loves me and begs that I heal
I remember his love, his zest and his zeal…
I reach out to touch him if just one more time
Reality hits and I’m torn back to mind
The message was clear my baby has spoken
I shall not continue with my heart and soul broken…
So I look to toward Heaven and I shout very loud
My darling, my baby, I will always be proud!
I now understand and I promise right then
No, I WILL never be the same again
I WILL accept and embrace this new chance to grow
From the knowledge I’ve gained from the seeds you have sown
I WILL work with others to help ease their pain
So that THEY will never be the same again…
I WILL work to live and love even stronger
I WILL work to heal and not just to wander
I WILL grow stronger with each passing day
I promise my baby I will make it this way…
I WILL always miss you that part I can’t stop
What you have given I will take to the top
My heart is still hurting my baby but then
I now know and accept
I WILL never be the same again…

Mattie died 18 weeks ago today. At 7:15am precisely. The night before he died and the morning of his death are so vivid in my mind. It is like a video tape that plays somewhere in the background of my mind. Why? Not only because it was the day I lost my son to cancer, but it was HOW we lost him. Mattie's room was like a battlefield. There were no guns or tanks, but our weapons were syringes after syringes filled with pain meds. Hundreds of syringes, not just one of two. These were in addition to the two continuous pain pumps that were circulating strong medications like Dilaudid through his veins. By this point, Mattie could bearly breathe, and was on an albuterol inhaler 24 hours a day. The sounds coming from his lungs (as Dr. Shad called it, the death rattle) were inhuman. These are memories Peter and I must live with, this is our reality. A reality of torture. Watching someone you love die in this traumatic way is life altering. I can still remember that day, how people reacted, and basically all the sights and smells. This is not a picture that can ever be erased from my mind, nor will I ever forget that in Mattie's stupor, his last words to us were, "I am dying!" He knew what was happening to him, without us ever telling him. I had NO chance to prepare him, no opportunity to talk with him (because I literally was in denial, until Mattie's nurses confronted me about the issue!), and no real chance to say good-bye. In fact, as I write this tonight, I find that just expressing my thoughts in writing brings me to tears. Mostly because I have so many issues with his death, and the devastating manner in which he left this earth.

I agree with Mattie's oncologist, Dr. Kristen Snyder. Tuesdays come around too quickly. As most of my readers know, Kristen writes to us every Tuesday in honor and memory of Mattie. These e-mails mean a lot to me, as does she. As I told Kristen she is a sentimentalist, just like myself, which is why I am not surprised she acknowledges each passing Tuesday with us. Kristen wrote, "Seven days pass so quickly. It seems just a minute ago I was writing you an email on another Tuesday. And it seems like only yesterday I saw Mattie in clinic racing around looking, by all accounts, wonderful. Somewhere in between he was taken from you (and all of us). There is no rhyme and even less reason. What a dichotomy this time is. Because as certain I am that I remember all this like it was yesterday...I know that your heartache feels like it is something you've carried with you forever. Please know that I am thinking of you...this Tuesday and Always."


I had the opportunity to trade text messages today with Dr. Aziza Shad. As some of you know, Dr. Shad is the head of the Pediatric Lombardi Cancer Center. In addition, she was the doctor on call the week Mattie got so ill and died. Though we worked with Aziza prior to this week, it was within that week, that we were bound forever. Doctors are trained to save people and to get them better, they are not well versed in dying. However, what makes Aziza the amazing doctor that she is, is that she is competent and capable in both. In addition to her competence, she is a deeply feeling person, and I could see that Mattie's death did not sit well with her. She helped Mattie die with dignity, and toward the end dignity seemed impossible. Today Ann contacted me and she told me that a family friend, studying to be a physician's assistant, needed a psych internship working with children. I immediately contacted Aziza. Aziza is in Ethiopia, yet within two minutes, she responded back to my text message and was instrumental at helping me with my request! I may no longer be at Georgetown, but Georgetown will always live in my heart. I reflect on the amazing women I met there and had the distinct honor of working with to help Mattie.

I spent the afternoon with Ann's children while she was out of town. Alison was kind enough to pick up Ann's children from the lower school for me. I still am unable to drive onto the campus. That may sound silly or immature, but I am not ready for this reunion quite yet. Alison and I were like two ships passing in the night today, but it was nice to see her and her son, Paul. Paul and Mattie were buddies and in the same kindergarten classroom. Naturally Paul is two years older from when I remember him, and this made me pause and try to imagine what Mattie would have looked like healthy now?

As I drove through Ann's neighborhood today, I saw a mom taking packages out of her car trunk, and right by her side was her toddler son. I couldn't help but watch this process and feel a sense of pain. It is almost as if I am driving, and yet seeing a flashback in my mind of what my life used to look like. It is a very disturbing scene and yet I have many scenes that play back in my mind in any given day, as does Peter.

The chasing game with Abigail and Katharina continued this afternoon. I was still a big block of chocolate, but I was given the powers to run around the house today. I think I tired the girls out, because at some point they settled down into quiet play.
 
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I loved the picture of Mattie and the explanation. Some children just don't want to miss anything that is going on in the world; they are fully engaged and curious about it all from a young age. I think it is wonderful that we will have another fund raising walk; I think people want to feel they are doing something as well as giving funds to a good cause. It sounds like yesterday was a busy day and you had a good time with the girls; just as Melissa said, I see hope and positive things in what you are doing almost every day. That you are getting out, interacting, and most importantly helping others means you will eventually have a successful journey to a more hopeful place. As I practice today I dedicate my energy to you to help you through the day."

Monday, January 11, 2010

Monday, January 11, 2010

Tonight's picture was taken when Mattie was 6 months old. At this age, Mattie had three favorite things to do. The first, was sitting in his entertainment saucer, the second was sitting in his walker (which we nicknamed tot wheels, though he couldn't walk, he would zoom around in this seat with four wheels), and third, was this jumper (seen in this picture). The jumper could be attached to the frame of any doorway, and literally Mattie could jump up and down and I would even swing him back and forth in this contraption. The jumper was a GOD sent. It was the only device or trick I had to use that would actually calm him down and get him to sleep. Sleeping DID NOT come naturally to Mattie. Forget the warm baths, soothing music, and all the other well known sleepy time remedies. They did not work on Mattie. I would literally put him in the jumper for 30 minutes, and wait for him to finally fall asleep. Faster motions were smoothing for Mattie. Then slowly I would transfer him to his crib. Despite my best efforts, he HATED the crib, and would wake up within five minutes. By 18 months of NO sleep, I finally decided to listen to his pediatrician and I read from cover to cover Richard Ferber's book, in order to learn the Ferber Method (a behavioral method to teach your child how to sleep). Ferberizing Mattie wasn't easy, he was very strong willed, but within a week's time, following the method, we restored some semblance of order back into our world.

Poem of the day: Remembrance by Evelyn Hall

Your loved one is gone,
But we won’t forget.
Their laugh, their smile,
Their face, their grace.
Your loved one is gone,
But we won’t forget.
The good times, the bad times,
The fears, the tears.

This poem is very touching, because it reminds us of the importance of remembering our departed loved ones. Specifically when it states, "but we won't forget." Just when I think perhaps the world has forgotten about Mattie or our daily grief, I get an e-mail from someone (like the one from Melissa below) who gets me to see the reality. I very much appreciate these reality checks, because grieving is painful and also very lonely.

I have been communicating back and forth through e-mail with Mattie's head of school, Joan Holden, and Mattie's assistant head of school, Bob Weiman (aka: The Magic Man to Mattie!). I asked them whether they would be willing to sponsor another Osteosarcoma walk on their campus this spring. I would like this to be a memorial walk in remembrance of Mattie. The walk is an outstanding way to reach out and educate the public about Osteosarcoma while also generating funds to go toward research and assisting other families fighting this horrible disease. Certainly Joan and Bob did not need to open up their campus again this year to us. After all, Mattie is no longer a St. Stephen's and St. Agnes School student. However, I see that once you are a Saint (the school's mascot), you are always a Saint. I am very pleased to announce that we will be working with the School to establish a Walk Date. So please stay tuned. Joan and Bob were extremely supportive of Mattie and my family throughout Mattie's battle, and they continue to be there for us through our current battle with grief. We deeply value and want to acknowledge this support.

I spent most of the day with Ann's children. Ann went out of town for two days to attend the funerals of a friend and family member. So while she is away, I am helping Bob with the kids during the day. We had a good time together, and covered all sorts of activities from homework, snacks, playing games, to after school activities. Abigail (Ann's youngest daugher) and her friend, Katharina, tonight were playing a game that they made up. The irony is, the game reminded me of something Mattie would have created. I was transformed from a person into a piece of chocolate, and I had both girls chasing me around the house. The game started and ended multiple times, and I have no idea how they even created it, but that is the beauty of a young mind. Needless to say, I was always captured (after all how fast can a candy bar run?), and hugged to death. Not a bad ending to being captured. Certainly better than being tackled to the floor.

Later this evening, Abigail announced to me that she is creating her own play, and writing songs to accompany the play. She was serious! She opened up a notebook, and on the page I could see words. I asked her to sing me her first piece. The song was entitled, "I found you." It was actually very touching, and naturally I couldn't help but have my mind drift to Mattie, in my hopes of finding him.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I feel sorry for those who have told you they cannot read the blog now, that it affects "them" too much. If you cannot bear sorrow for a friend, what does that say about you as a person? And why should anyone put that burden on you by telling you that? I don't understand the selfishness of someone like that. Perhaps what it says is not that these persons feel too deeply, but that they don't have the inner strength to hold up. And what does someone like that do when sorrow strikes them? Run? Hide? Because no one is immune from sorrow and grief. Truly I think you are bearing your grief with more grace than can be expected in your situation and I regret that some who started on the path with you have turned out to be more a burden than a help to you. Although it seems counter intuitive to do things around children right now, I believe no matter what you do the grief is there waiting and so you should do what it seems right to do at the moment and let the grief come as it will. It is like the ocean, you can fight or you can swim with the tide, either way it is bigger than we are and you will end up where it takes you. Fighting can leave you absolutely exhausted but does not shorten the journey so I suggest you go with it, wait for it to subside and then pick yourself up and go on when you can. I hold you gently in my thoughts and will pray for a space of serenity for you today."

The second message is from a colleague of mine. Melissa wrote, "I should strive to write you more whenever I have a thought, however little and insignificant it may seem at the time, in hopes that it might convey that I'm thinking of you, am still reading your blog, and am continually impacted by Mattie's life/story and you and Peter's struggle. I often hesitate to write as I'd like to give more thought to my reactions and formulate a well thought-out and decently written e-mail, but I want to try to abandon that. Two thoughts today. One--I know you are struggling with the impact you are having on your readers and what if anything to do about it. First, I think that it's best to be honest whenever possible and that one of the best gifts we can receive from an honest expression is empathy or an attempt at empathy. If you are honestly expressing and your readers are actively empathizing or trying to empathize--I believe that good things will ultimately come of that. Second, you may not see even a smidgeon of hope in your day to day existence and much of what you share is absolutely heart-wrenching. However, perhaps it's the counselor in me, but I can find hope in small and big ways in so many of your entries. Simply getting up for the day and getting out of the house demonstrates a bit of hope to me. It may not to you, you feel "what choice do I have?" But you are not curling up in a ball each day. You are writing each day, reflecting each day. Sharing with others each day. Even giving of yourself or thinking of others many days. Searching each day. There is a smidgeon of hope in each day that you rise, in each activity you encounter, in each activity that you reflect on (even if it's negative--you are still engaged!). I see those small and big victories and I see them as hope. Perhaps I have to look hard for those things, but I am not giving up and it seems that although it is the most difficult thing you have ever tried to do, you are not giving up either...far from it. I continue to read, wait, watch, feel and learn from you. Thank you for continuing to share."