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."

Sunday, January 10, 2010

Sunday, January 10, 2010

Tonight's picture was taken in July of 2002. Mattie was three months old! Right from the beginning, Mattie seemed to have a sense of humor and smiled. Of course, his pediatrician assured me he really wasn't smiling at me, but instead was passing "gas." Contrary to scientific belief, to me, Mattie was smiling and that is the story I am sticking with!

Poem of the day: Right Now by Scott Tallman

Right now you feel helpless,
So lost and confused,
God has taken your child,
You’re feeling abused.
Right now your heart breaks,
When you hear the name,
Of the child you brought forth,
Life will never be the same.
Right now you feel lost,
You keep asking how,
You struggle each day,
What will you do now?
Right now you feel heavy,
And every last step,
Like pulling an anchor,
You’re feeling inept.
Right now there is sadness,
No one can ever know,
The feelings inside you,
The tears start to flow.
Right now you are angry,
You have every right,
How could God take them,
Their future so bright!
Right now you are longing,
Please just one more touch,
One more smile, one more kiss,
For the one you love so very much.
Right now you feel lonely,
Though many are near,
Some will reach out,
While others will fear.
Right now you are feeling,
The pain so intense,
When will this pain end,
Will it ever make sense?
Right now there are no answers,
To any of this,
Right now you would long for,
One moment of bliss.
Right now I am here,
Your family, your friend,
Right now I will help you,
My shoulder to lend.
Right now you must know,
No matter what time of day,
I’m here for you always,
Together we will pray.
Right now I am sending you,
All of my love,
Right now I am with you,
You the hand and I the glove.


Charlie sent me this poem today, and I told her it captures my feeling perfectly. In fact, I could just post the poem and not have to say another word. I do think others in my life try deeply to empathetize with how I am feeling, yet at the end of the day, Peter and I feel the pain so intensely that I am not sure others can understand, appreciate, or comprehend our internal dialogues and feelings. Yes you can walk the pathway of grief with me, but certainly not all aspects of it. I am very aware of the fact that the loss of Mattie affects us all differently, our reactions may be different too, but Mattie was my son. We spent an inordinate amount of time together, and now that he is missing from my life, it produces an unexplainable void. This void clouds my vision of everything. Certainly I am not generalizing this to everyone I know, but I do sense that others have moved on with their lives (which of course they should, this is healthy), and therefore expect me to do the same. I know seeing me sit in grief and being unhappy isn't pleasant, but unfortunately this is my life, and only I can determine how and when I will progress through this.

Today, Abigail and Charlotte had a joint birthday party. They both turned 8, and decided to have an ice skating party. Before the party began, a bunch of us worked on transforming the room into a snowflake wonderland. There were streamers, snowflake cut outs, and balloons everywhere. It was very festive, and while we were running around, Mary (Ann's mom) was getting a kick out of watching us. Mary was awake and alert for the whole event, and took everything in. I know being there (though a feat to get her there!) meant a great deal to her. The kids had a fabulous time, though I knew I couldn't watch them skating today. I only observed for maybe five minutes, and then spent the rest of the time with Mary in the party room. I can take short dosages of happiness. I am sure that sounds very strange. But seeing happiness affects me, it reminds me in a very bold way of what is missing in my life, and the pain I am experiencing.

By the end of the party, I could feel as if I was shutting down. I neither wanted to talk about anything nor did I want to be around others. As I was heading home, Ann called me, because I imagine it was evident to her that I wasn't in the best of places. Some times in my low moments, of which I admit to having, I can't see any way out of this pain. It is almost as if I am paralyzed with feelings. As I was driving home, I prepared Peter through a text message that I wasn't in a good place. He helped me with dinner, but I was in no mood to talk. Peter and I in some respects do not need to say anything, especially when we are feeling the same way. So I stuck with the task of making dinner, and tried to work out the hopeless feeling within me.

I was e-mailing my lifetime friend, Karen, back and forth tonight. She of course wasn't at all surprised by how I felt considering I went to a birthday party. I know she is absolutely correct, certain things can set me off. The question is do I set myself up for these major let downs? Maybe I do! However, how do I go from doing mom things for SEVEN years, to nothing?! Sure I could have stayed home, not helped Ann, and heard about the party instead. With that said, I have no doubt something else would have popped up that would have triggered a reaction in me. This is what is so pervasive about grief, it is everywhere, and I could isolate myself from the world, and still feel a profound uneasiness, because my grief comes from within.

I would like to end tonight's posting with a lovely message I received today from my friend, Charlie. It meant a lot to me to hear how Mattie's life has affected those who did not even know him. Charlie wrote, "What you described yesterday, making a plan, putting your emotions temporarily on a shelf to gather your energy for this battle is exactly why I have hope that you will show us all the way to journey back to hope. That is something I have heard survivors say over and over again. I did want to share with you that your blog, Mattie's story, reaches much farther than you know. I shared his story with those I work with, several took time to read a number of blog entries and then went on to share those with others they know both here and far away. So Mattie's story has a much wider circle than you can imagine and occasionally I even get a note from someone who says, I told my cousin about Mattie and she and her husband read the blog and wrote back to me mentioning that they decided to take all their daughter's art supplies to the local hospital in his memory. Things like that. While nothing will bring Mattie back, I find it hopeful that people are willing to do in memory of someone they have not met as a way to pay a good deed forward. I am glad you took the time yesterday to get a haircut and manicure and be good to yourself. May you find a way to be gentle with yourself today as well."