Saturday, January 9, 2010

Saturday, January 9, 2010

Tonight's picture was taken when Mattie was 6 months old. Mattie's favorite things to eat by this point were sweet potatoes (which you can see traces of all over his mouth!), butternut squash, pear sauce, and naturally oatmeal. Mattie loved oatmeal from the moment he tried it! In fact, he loved oatmeal so much that he ate it every morning of his life, until the year he developed cancer.

Poem of the day: Hope by Charlie Brown

The sun is out
The day is bright
But in my world
There is no light
My son, my boy
Has gone away
No more sounds
Of him at play
No butterfly kisses
No goodnight hugs
No practical jokes
And no more bugs
My heart is broken
But I have to pray
That there is a heaven
And I will see him someday
Until then I wait
With love in my heart
And hope we meet
And never again part

There are some days in which I wake up, have a plan for the day, and try to stay focused upon these objectives. In the process, I am not denying my feelings for Mattie or my problems, but instead I am putting them on my mental shelf, so that I can take a temporary break to build up energy to continue to fighting the battle of grief. Cancer was not the only battle Peter and I fought, grief is also a battle. An ominous one at that. You can't see it, there is no medicine or testing you can throw at it, but it is REAL and very much takes over your body, mind, and spirit. Just like cancer! We weren't very successful at fighting cancer, it is my hope that we can do better with grief. Some days are more taxing than others, and different things can set us off, so it is very unpredictable.

Today I went to get my hair cut. The person who cuts my hair has been working with me for years. She knew me before I was pregnant, and then followed me through Mattie's development. She naturally knows about Mattie's death, and tries to make my experience relaxing whenever I enter her salon. I don't do that often anymore, but it was nice to step out of my daily problems and try to relax. She treated me to a manicure as well, which was very thoughtful. So by the time I left, I at least felt better about my hair and nails. Sounds shallow, but these days, I look for the small victories to feel better about. Peter and I went out to lunch, and had a nice time chatting. We had almost a year of NO talking, while meeting Mattie's demands and needs, that reconnecting is imperative. While at lunch, sitting behind Peter, was a new mom with her baby. The baby was a boy and she was holding him literally up to her cheeks while she was eating. I couldn't help but watch her, because I remember what that feeling was like with Mattie rubbing against my cheeks. Mattie always did this with me, even in the hospital. Actually Mattie and I would also put our foreheads together, and just stare into each other's eyes for minutes on end. A lot can be learned by looking deeply into someone's eyes, and as we were staring we usually landed up smiling at each other. I can almost picture what his eyes and smile looked like as I am telling you about it tonight.

Mattie had a haunting smile and personality and those who interacted with him during his cancer treatment some how were touched and impacted by him. Our friend, Mary, whose husband was in the hospital for almost two weeks, told me the other day that her husband's in-home nurse was also Mattie's nurse. Mattie had three in-home nurses who checked on us periodically. This particular in home nurse was very upset to hear that Mattie died. Somehow Mary telling me this made a big impression on me. I have been reflecting on it for days. First it illustrates to me how small our world is, because what are the chances that Mike (Mary's husband) would be assigned the same nurse as Mattie? But what really touched me was the fact that this nurse was captivated by Mattie's charm and zest for life. Despite all the torture he went through, he always had a spunk and spirit about him. It was down right remarkable, because with a simple cold, I feel miserable and wiped out. Mattie went through surgeries and very toxic chemotherapies, and yet always bounced back. ALWAYS! It is hard to rationalize how he was able to survive all of that, and yet in the end die. I truly love hearing about who has been touched by Mattie's life, and the more stories I read, the more I realize Mattie was a remarkable little boy.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Sometimes the blog is very hard to read but certainly it is harder to go through the grief than to read about it. I agree with you that if the blog makes you question, to think about things and to be more mindful of your life and what is important, that's good even if getting there is a painful process. I've met a number of "survivors" at Haven and they give me hope that when the time comes to face some serious loss that I can successfully make the journey through it to the other side. It is easy for me to say as I am not now facing what you are but I can say if there is a person who can come to a place of hope, I would say you would be one who comes immediately to my mind. Your ability to see yourself, your thoughtfulness about life, your caring for others all tell me that you will eventually find your way through the journey. I am now convinced that it is a long one, with many ups and downs and steps backwards but since you are willing to get out, to do things, to connect with others gives me hope on your behalf. As always I am thinking of you. I hold you gently in my thoughts."

Friday, January 8, 2010

Friday, January 8, 2010

Tonight's picture was taken when Mattie was 7 months old. Peter had just come home from work, and was greeted by Mattie and Patches (our cat) by the door. I snapped this picture of the three of them, because it seemed like a teachable moment. Peter was showing Mattie how to pet and care for Patches. Mattie was a holy terror with Patches, particularly in his toddler years. He would chase her, pull her tail, and scare her. Despite the poor treatment Patches received, she put up with Mattie, and NEVER ever tried to hurt him. She probably knew that if she did, there would be consequences. As Mattie aged, and after countless lessons, he finally treated Patches with respect and love. He was actually very protective of her and if friends of his came to visit and tried to scare Patches, he would give them a talking to. Though Patches now is very sick, and most people would probably have put her to sleep because of her behaviors, I tolerate her extremes. Why? Most likely because I will never forget what she put up with for years from Mattie. Ironically Patches used to spend a great deal of time in Mattie's room when he was alive. Now that Mattie is gone, Patches refuses to spend any time in Mattie's room. I mention this because I think on some level she understands something is very wrong.

Poem of the day: I know by K and Lois

I know you worry, dream and pray
That I'm alright and happy.
God is making sure I am, he fusses over me.
I know you miss and love me
I feel the same for you.
God tells me that's alright, it's what loving people do.
I know you hope I knew them all,
The ones who met me here,
Grandmas, grandpas, aunts and uncles,
And friends who took my fear.
God joined them at the gate,
He cried and said he missed me,
Because you taught me of His love,
I hugged him back—He kissed me.
I know you know I love you,
Please don't be afraid.
I laugh, I giggle, run and hide
With all the friends I've made.
So when you worry if I'm safe
Please remember this,
God is taking care of me, I laugh, I love, I live.
I love you, Mom
I love you, Dad
I worry, watch and pray.
Please don't forget how much I need
you both to be OK.
I'm always watching over you,
I know how hard you try
And when we meet again
You'll know—with love we never die.

Tonight's poem, I know, stopped me in my tracks today. I think it affected me so, because I must admit I never thought of the possibility of Mattie looking down at me and wondering if Peter and I are okay. Or even the possibility that Mattie is seeking God's comfort as he tries to understand why Peter and I are so sad, angry, and depressed. Mattie's death has challenged my understanding of God and with that has made me question whether there is a heaven and an after life. Other families impacted by cancer have expressed many of the same doubts and concerns as me, and I do not think this is an unusual feeling, especially since everything I understood about the world and life came tumbling down when Mattie died. But after reading this poem, I pause, and wonder if Mattie is watching us and is upset by what he sees? 

I have been reflecting on the fact that my blog is impacting several of my faithful readers. I have been pondering what to do about this, or even if there was something that should be done about this. When Mattie was fighting cancer, though I reported all the grueling details of our days and nights, I always tried to find something hopeful to cling to. Something to keep us, him, and our community going. I realize my current postings are unable to do this, mainly because when Mattie died, so did my hope. My hope for a cure, my hope to remain a mom, my hope that good conquers evil, and I could go on. So I realize my postings now may be hard to read, hard to sit with, and basically you may find you are questioning your own life, your existence, and that of your family's. I could apologize for this, but then again if I can get you to pause and open your hearts and minds to our grief, then I would say as an educator at heart, I am doing a good job. All I can say is the support you give me by checking the blog and staying with me through all this impacts me tremendously and it is my hope that in time if you stick with me during this tumultuous and painful process that perhaps you will see my desperate journey and progression to restore hope. Certainly if I can achieve this, this will be the ultimate illustration of resilience.

I spent the day with Ann. When Ann and I are together, it seems we can accomplish a lot in one day. While she was shopping at Target, I sat down and waited for her and had hot tea. In my current state, sitting still isn't always a good option for me, but I found this 20-30 minute break was very helpful. I sat and watched people, and electronically connected with my friends, Karen and Christine, and of course Peter. Christine's son and Mattie were close friends in kindergarten, and in the process, Christine and I spent a lot of time together and truly enjoyed each other's company. With Mattie gone, it can't help but affect how we both feel. As Christine always tells me though, we are friends always, and today's text messages back and forth brought me great happiness.

Ann and I visited her mom today, and then went out to lunch. While at lunch, we bumped into a SSSAS mom and team Mattie supporter. It was lovely to see Laurie, and to reconnect with her. Great progress is being made on Abigail's birthday party items, and I told Ann these projects keep me busy, focused, and feeling like I am producing something. But more importantly they make me feel connected to others and the world. Which isn't easy, it would be a lot easier to completely shut down.
I also had the opportunity to see Tanja and her daughter, Katharina, this afternoon. I haven't seen them since they went on their trip to Germany for Christmas. Katharina wrote me an e-mail while she was in Germany, and when she saw me today, she came over to give me a hug, and wanted to know what I thought of her e-mail. Though Katharina did not know Mattie long, I can see he made an impression on her.

Peter and I went out to dinner tonight and bumped into JP, the owner of JJ (our resident Jack Russell Terrier). JP is still devastated about Mattie's death, and he shared with us the story about how JJ knew Mattie died before he did. On September 7, JJ came to our front door looking for Mattie. Naturally Mattie was in the hospital. However, starting on September 8 (the day Mattie died), JJ refused food for three days straight. When JP took JJ to the vet, the vet said that JJ in his own way was grieving for Mattie. Prior to Mattie's death, if someone told me this story, I would question it. But now I think anything is possible. JJ and Mattie literally grew up together, and loved playing with each other. Animals can feel, okay they may not process things at our cognitive level, but they know or sense when something is wrong or missing.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote," It is a wonder after all you have been through that you can walk into a hospital without shaking. I am not surprised at your reaction while waiting for the sonogram; none of us like medical tests and after going through what you did with Mattie, I would have to say you were a "trooper." Liz summed up everyone's feelings, Mattie's death was senseless and unfair. There just are not enough words in English to really describe grief and loss and those we have somehow seem to fall far short. In spite of that, what you write touches people deeply, many readers now stop and say thanks for what they have and realize how fragile and precious it all is. Others of us are now more involved in "doing", volunteering or mentoring or some other action. So like the pebble, Mattie's life and your blog have had ripple effects far beyond that you could have imagined. I dedicate the energy of my practice to you; be gentle with yourself today."
 
The second message is from a friend of my sister-in-law's. Lesley lives in Boston, and actually attended Mattie's funeral. The funeral was the very first time I met Lesley. We did not know each other prior to Mattie's illness, yet Mattie's story compelled her to get to know us, and needless to say I was happy and honored to meet her at the funeral. Lesley wrote, "Today was the first day I woke up and did not go straight to the blog. Your pictures have haunted me because as I read your memories, the reality is that my own are not as vivid as I wish. Your pictures bring back the feelings of being a new mom and dad and believing in the future. Mattie was scrumptious, engaging, and adorable! The love within your family is so apparent in the photos. While I do not know the stories behind the photos, the images you captured say it all.... Mattie felt loved every moment of his life. I hope today brings you some moments of peace."

Thursday, January 7, 2010

Thursday, January 7, 2010
Tonight's picture was taken in November 2002. Mattie was 7 months old, and was fascinated by the oak tree changing colors outside our window. It is hard to tell from this picture, but Mattie is wearing a puppy dog hat which made him look simply adorable. It was one of my favorite hats on him.


Poem of the day: No Fear in Heaven by Ferna Lary Mills

There are so many things in life that we can't understand,
like why a tragedy like this can happen in this land.
One moment life is perfect and the next it falls apart,
leaving us with nothing but an eternally aching heart.
Our souls cry out in agony amidst the suffering and despair.
We feel the pain and tear our clothes and scream "It isn't fair!"
Spirits are now shattered. Hearts will never be the same.
We grasp at straws and seek to find the one who is to blame.
Horrific as our life now seems, one thing remains quite true.
Our little ones have now been freed to do things angels do.
They can't recall the horrors of those last days they were here.
They remember not the terror, the hurt, nor the fear.
There is no fear in Heaven. No more sorrow. Only Joy.
It's filled with joyous laughter from each little girl and boy.
We can only try to imagine, in spite of all earthly wrongs,
our little angels are learning the words to the Angel's songs.
Amidst the children's laughter and their Heavenly play,
there's also more important work going on there today.
Jesus is building mansions, never taking time to sleep,
for Reunions are being planned, yes, even as we weep.
The children gather around Him and listen to Him speak,
for He has all the answers that they curiously seek.
He tells them for a time, in Heaven, they must wait,
and then they can meet us at Heaven's pearly gate.

This morning I was scheduled for a sonogram of my kidneys. I have chronic issues, which have recently flared back up. In order to sit for the sonogram however, I had to drink 32 ounces of water in one hour and then hold it. That may not sound very hard to do, but for me, consuming so much liquid and holding it in, is almost impossible. I was able to drive to the hospital for the test, but while sitting in the reception area, awaiting to be called by the tech, I thought I was going to burst. It was during that time that I text messaged Peter. I actually brought a book with me, thinking I was going to read while waiting. What a joke, as my pain started to intensify, I thought I was going to throw the book at someone. Peter tried very hard virtually to support me through this. Certainly such a procedure is nothing to get worried about or complain about in comparison to what Mattie had to endure. I could easily rationalize that, but then I also have to remember my body and mind are frayed from the battle with Osteosarcoma. Things that never bothered me in the past, now bother me very much. In addition, I was once a somewhat confident individual, and now even that has been rocked and there are days my self-concept is on shaky grounds. The only saving grace is the sonogram was only 15 minutes long. After this was all over, I called Peter to thank him for being there for me, despite working and being in a meeting.

I spent part of the day at home today. While at home, I started looking at Mattie's pictures. Somehow seeing one picture after the other, I landed up crying and could not stop. It is in times like this I feel so confused, upset, and angry over what happened to Mattie. I have also received some lovely and very moving e-mails this week from Team Mattie supporters. I am not sure why I never realized this, but I now see that people are deeply affected by reading the blog. Though I try very hard to capture my feelings and describe what I am going through, I sometimes am not sure I am adequately conveying the sentiments. Mainly because I think the English language is limited in describing the nuances of grief. Nonetheless, this week I realized that my words are deeply impacting others, their lives, as well as their outlook on the future. It certainly is not my goal to depress my readers or give anyone an existential crisis. At first I felt bad that others are so affected, but then I had to step back from that feeling. Instead I am honored that my words are that powerful, I am moved that others would continue reading the blog despite how they are affected, and most importantly I am humbled that Mattie's life and death has had such a profound impact on those who knew him directly or indirectly. We live in a world where death and dying are neither understood or even talked about. However, this is a fact of life, and unfortunately my daily fact of life, which I need to talk about and process. In doing so, this helps me honor and keep Mattie's memory alive. Tonight, I was e-mailing my lifetime friend, Karen, back and forth. I was telling her about my day, and I explained to her that Mattie's pictures set me off today. She then told me that she was going through paperwork and files this weekend, and came across all of Mattie's Christmas cards and birth announcement. She said that these items upset her too, but I told her I was honored that she saved all these things. I am not sure why I was surprised, maybe because I figured Mattie's pictures weren't as important to others as they are to me. But Karen is a sentimentalist like myself, never the less, this whole conversation made me smile.

In the midst of crying today, Ann happened to send me a text message. In my response to her, I told her I was upset, and the next thing I knew she was calling me. Typically when I am upset, I am in no mood to talk. But there was something about today's sadness, that made me happy that someone was checking on me, and was there to listen to how Mattie's pictures made me feel. I still have a hard time verbalizing my feelings at times, and am trying to work on being more forgiving to myself. The words and feelings will come outwardly as I am ready.

After I composed myself, I decided to go out to the shopping mall and walk around. That helped to clear my head. When Peter came home, he told me about his meeting with Tamra today. Tamra is a SSSAS parent, a friend, and on the Mattie Miracle Cancer Foundation board of directors. Tamra and her family helped us tremendously while Mattie was in the hospital, and we are grateful for her continued support. Peter and I chatted over dinner, and we are working hard on connecting through the pain.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Like you I feel children belong with their parents who love them, not somewhere else. However, when they are taken by illness or accident and they are no longer able to stay on earth with us, I think most of us hope we will meet them again someday. I agree with you that it is all surreal somehow, I half expect that I will open the blog one day and read that it was a mistake and Mattie is still here. Unlike you, since he was in your life every day, I get to imagine him away playing at camp or somewhere else fun for him. What you said about fear of forgetting: I’ve read that in a number of grief books. So many people are afraid they will forget how their loved one looked, sounded, smelled, felt. I don’t know what to tell you, but for me, smell is the strongest memory and when I smell my mother’s perfume, she could instantly be in the room with me. Perhaps one sense is stronger than the others for you; perhaps you can call on that when you feel a need to have him close. As always I hold you gently in my thoughts and I wish you a space of serenity today."

The second message is from one of my teaching assistants who I have had the pleasure of working with and getting to know over the years. Liz wrote, "The blog's pictures for the past two days have been very jarring to me. Such beautiful pictures of Mattie at an age where all you had for him was hope and dreams about what his future may hold. It's probably because I'm a new mom but I feel like these images give me some insight into the devastation you must be experiencing. My heart breaks for you and Peter. Each time I write an email to you, the word "unfair" is on replay in my head. It is just too unfair and too hard to make sense of. You are a champion of champions to continue on as you are, honoring Mattie's memory through the blog, the foundation, and trying to find the good in life after such a senseless loss. Much love to you."

Wednesday, January 6, 2010

Wednesday, January 6, 2010

Tonight's picture was taken when Mattie was seven months old. Mattie was hesitant for the longest time to get into the bathtub. But once he got used to it, I couldn't get him out of it. Mattie literally would take hour long baths, and as he got older, he would sometimes jump into the tub without any water in it, and just play in the tub fully clothed. When he would do this, it always made me laugh!
Poem of the day: Thought I'd never have to...  by Raquel Calderon

I knew this day would eventually come
But I never thought it would be now
He was so precious, he was the one
Who would change my life some how.
You are not supposed to bury your children
They are supposed to bury you
It's hard to think this disease would take him
And there is nothing I can do.
It was so hard to say those words
Because we all loved him so
I didn't want him to suffer any more
So I had to let him go.
His passing was so hard to handle
But has made us oh so strong
We know the road will be a battle
But he is where he belongs.


Tonight's poem, Thought I'd never have to, is a title I can relate to, after all I never knew Mattie would develop cancer, die, and we would have to plan his funeral. Even writing this seems surreal. Children are not supposed to die before their parents. When this happens, it does make you question everything about life and its reality. Though I know Mattie was in terrible pain and was suffering, a part of me just can't accept the message at the end of this poem, in that "he is where he belongs." If he was where he belonged, Mattie would be with Peter and I.
Last night, I was placing a membership card to a professional association into my wallet, and while looking through my things, I noticed a piece of notebook paper in my wallet. Do you want to know what was on this paper? It was a picture drawn by Mattie, specifically a picture of me and Mattie together. In fact, Mattie wrote "mom" and "Matt" on the piece of paper, next to the respective picture. I normally have a solid memory for things like this, but I honestly do not remember when Mattie drew this picture or even when I decided to put it in my wallet. So I was truly surprised, almost stunned, to find this Mattie creation.

Though grieving is a horrible feeling, the worst part about this whole experience is trying to remember. Because I don't see Mattie and interact with him everyday, in a way part of the simpler and more beautiful parts of him fade into my memory. I desperately try on a regular basis to remember his face, his smile, his eyes, and his voice. However, as time passes, I have to reach deeper and deeper into the recesses of my mind to keep this picture alive. Sure I could look at pictures or even perhaps videos, but it isn't the same. None of these things capture Mattie's true spirit and essence. Mattie will always be a part of me, but it pains me that I struggle to remember my times with him and my role as his mom. It is almost as if this battle with cancer and losing Mattie happened in another lifetime of mine. It has dawned on me tonight that perhaps I am trying to connect with other children as my attempt to ultimately keep my memory of Mattie alive. Being around children is lively and at times it can't help but call to mind the sights and sounds of Mattie.

I spent part of the day with Ann, working on things for her daughter, Abigail's, upcoming birthday party. In addition, I had the opportunity to help the family I have been telling you about. I am happy to report the little girls' dad is home from the hospital today!

When Peter got home tonight he told me he was feeling "blue." He did not need to say much else, I understood completely. Each day now feels like the day before, in which the joy and happiness have been sucked out of life. It is very disconcerting. I could try to describe how we feel to you, but I wouldn't be doing in justice. The scary part though is that I can imagine living the rest of my life in this current state. The prospect of this is daunting.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As always I stand in awe of your grace in dealing with the conflict that being around children raises. It is incredibly hard to hear about events and experiences you (and Mattie) no longer share with others but you find ways to bridge the gap. I know that Ann and Alison were happy to have you there at the lunch; you have a very special bond with both of them that I think will continue to grow and deepen with time. Childcare is a wonderful gift to give the mom of those two little girls so that she can be at the hospital without worrying; many people in your situation would not do it although I think it helps with healing as well as giving you a chance to give back. I understand about intangible gifts; people often wish for more time with someone who is gone or for the ability to maintain hope or another positive emotion; we all wish we could do this for you. I will keep you gently in my thoughts."

Tuesday, January 5, 2010

Tuesday, January 5, 2010 -- Mattie died 17 weeks ago today (or 4 months ago)!

Tonight's picture was taken the first week Mattie came home from the hospital after he was born on April 4, 2002. Mattie looks so peaceful here, and his first few days at home he slept a lot, but as soon as he acclimated to being home, he seemed energized and was up ALL the time. I purposefully picked this picture to be posted tonight since today marks the four month anniversary of Mattie's death. I want our readers to always remember the beautiful baby he was. He was born healthy and now I can't help but wonder was Osteosarcoma lying dormant in his body all along?

Poem of the day: For Mattie by Charlie Brown

Every day your heart breaks anew
When you wake and he's not here with you
A boy made of precious stuff
With inside soft and outside tough
He loved bugs and mud and mess
In that, he was much like the rest
But his heart was all his own
Who knew he would be just a loan?
We miss you now Mattie Moon
You left us here much too soon.
You are at peace so show us the way
To keep a piece of you with us each day
Send your parents lots of love
From your perch in the heavens above
And help them cope with the loss of you
As each day their hearts break anew.


As today marks the four month anniversary of Mattie's death, I feel the need to let you know that our grief is still very real, life altering, and I continue to take each day, one day at a time. As time passes, I try to recollect and hold onto my role as Mattie's mom. Perhaps this is one of the reasons I can't part with any of his clothes, toys, and paperwork. Everything is just where we left it while he was hospitalized. In fact, I haven't even unpacked our hospital bag. I certainly know I am not returning to the PICU, but I can't face unpacking, I can't face what unpacking really means. So for now, everything is in a state of rest. I am so conflicted about this. I need order and structure in my life, but nothing in my home is organized anymore. Why has this happened? Well imagine you being away from your home for 15 months, however, periodically you come back and dump gifts, mail, and other documents in it. Well eventually this piles up until it is unmanageable. So though the threat of cancer is removed from our lives, my cancer world of chaos still surrounds me. Everywhere!

Today was Alison's birthday, and Ann and I took Alison out to lunch to celebrate the special occasion. Alison's son was in Mattie's kindergarten class, however, we did not really get to know each other until she became an instrumental part of Team Mattie. In fact, I always sit back in awe of Ann and Alison. These were two women who did not know me well, yet not only did they rise to the occasion, but did it in an exceptional and loving way. Alison went through all the ups and downs of Mattie's treatment with us, and was always an empathetic ear. Alison is a deeply feeling individual, which is probably why we see eye to eye on many things. In fact, I learned today that we enjoy reading the same types of books. I am not sure why that was surprising to me, but some how that brought me happiness to know we share another commonality. We had a lovely lunch talking about various things. Today was the first day back at school for Ann and Alison's children, after the winter holidays. Naturally I am torn over how I feel about this. My first reaction is of course that I feel that Ann and Alison are so lucky to have children. I am not jealous, I am simply stating that I appreciate their roles more than ever, now that I don't have mine. I wish I could talk about Mattie's first day back at school as well. Yet, on the other hand, Ann and Alison are my friends, and I want to share in their lives. Which means talking about their children and school. The daily stressors of motherhood are real and not to be minimized. So as I try to face and accept this inner conflict I have, it is my hope that those close to me can appreciate how I feel, and that I am doing my best to try to resolve these feelings. But it will take time, simply because my pain and hurt are still quite raw.

After lunch, I spent some time with the two little girls I told you about whose dad is in the hospital. While visiting the girls, I had the wonderful opportunity to see Lana, one of Mattie's preschool teachers from RCC. She was helping out today as well. Lana is a faithful blog reader, and Peter and I so appreciate Lana's continued support. Lana told me a very touching story today about when her father died several years ago in December. The first Christmas she spent without her dad was naturally painful. When her son asked her what she wanted for Christmas, she simply stated.... she wished for hope and happiness for example. Instead of her son filing that thought somewhere, he gave her a special gift for Christmas. He gave her teddy bears with the words, hope and happiness sown into them. The way Lana told the story was simply beautiful because it captured two things. The love her son has for her and also the profound impact her dad's death has on her. She did not want a gift you could buy, she wanted something intangible. Just like I feel now. I related to Lana's story as if it were my own. As Lana was talking today, all I could remember is the wonderful times Mattie had with her and Margaret. I miss those days but remember them so vividly!

While visiting with this family, I also had the pleasure of seeing Carolyn. Carolyn is a RCC mom, her daughter was in Mattie's first preschool class, and Carolyn was a major Team Mattie supporter. It was nice to catch up with her. In fact, seeing Lana and Carolyn made me only remember the beauty of RCC (Mattie's preschool) and the happiness those two years produced for us.

I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend, Dr. Kristen Snyder. As my readers know, Kristen writes to us EVERY Tuesday, to mark Mattie's death. Kristen wrote, "On these dreary wintery days...on this Tuesday and every day...I hope the spirit of your sunshine Mattie warms your heart. It is obvious the countless numbers of people Mattie has touched. You both are so integral in him being able to reach out and make a difference even now, across the heavens. What an amazing ability your little boy has. Thinking of you, this Tuesday and always."
The second message is from my friend, Charlie. Charlie wrote, "Grief does compromise your ability to concentrate; many people report either intrusive thoughts or just an inability to focus. For the most part, it seems as though the skills you had come back as time passes. I am sure that hearing again that time will help is not what you want to hear but things cannot be rushed and in fact, rushing often ends up making things harder. It is so clear to all of us who know you that you are a wonderful mom, patient, caring, loving and most importantly, willing to give of yourself. I think part of your question going forward will be, what to do with those skills and traits? I don't know the answer and probably right now, neither do you, but at some point I think you will be ready to explore this. I hope so because there are not enough people in the world with those skills and we need all we can get. Be kind to yourself, I hold you gently in my heart today as I dedicate the positive energy of my practice to you."

Monday, January 4, 2010

Monday, January 4, 2010

Tonight's picture was taken in April 2007 at Calvert Cliffs State Park in Maryland. This is an amazing park, with a mile long picturesque boardwalk that eventually ends at the Chesapeake Bay, with a large beachy area. On the beach, if you dig a while, you can find many sharks' teeth. Mattie loved this adventure, and had no problem walking one mile back and forth in a given day. He was a born explorer and had an outstanding sense of direction!

Poem of the day: No Fear In Heaven by Ferna Lary Mills

There are so many things in life that we can't understand,
like why a tragedy like this can happen in this land.
One moment life is perfect and the next it falls apart,
leaving us with nothing but an eternally aching heart.
Our souls cry out in agony amidst the suffering and despair.
We feel the pain and tear our clothes and scream "It isn't fair!".
Spirits are now shattered. Hearts will never be the same.
We grasp at straws and seek to find the one who is to blame.
Horrific as our life now seems, one thing remains quite true.
Our little ones have now been freed to do things angels do.
They can't recall the horrors of those last days they were here.
They remember not the terror, the hurt, nor the fear.
There is no fear in Heaven. No more sorrow. Only Joy.
It's filled with joyous laughter from each little girl and boy.
We can only try to imagine, in spite of all earthly wrongs,
our little angels are learning the words to the Angel's songs.
Amidst the children's laughter and their Heavenly play,
there's also more important work going on there today.
Jesus is building mansions, never taking time to sleep,
for Reunions are being planned, yes, even as we weep.
The children gather around Him and listen to Him speak,
for He has all the answers that they curiously seek.
He tells them for a time, in Heaven, they must wait,
and then they can meet us at Heaven's pearly gate.

I had a follow up meeting with my neurologist today. I know many of you have followed this saga with me regarding this particular neurologist, I thought you would like to know he was lovely again today. We talked about the progress I am making with my headaches and various other things. I found it interesting when he asked me if my headaches got worse over the holidays. He said this typically happens to people. It was at that point that I reminded him that for me everyday is stressful, not just on Christmas and New Year's. I think that was a sobering reality check for him, and when he connected the dots back to Mattie he realized that what he said was probably not very sensitive. The problem is I have been spoiled for a year. I was surrounded by oncologists, who for the most part are highly sensitive and very caring physicians. I imagine you have to be this way as an oncologist based on the life threatening issues you discuss with families on any given day. However, our Georgetown oncologists, unfortunately ARE NOT representative of the entire medical profession. The whole profession needs to be seriously re-evaluated. Doctors are unable to make medical decisions for themselves, and any time you disempower a professional, no good can come of that. Doctors are held to a tight time schedule, are regulated by insurance companies who know nothing about medicine, and I truly believe because doctors are regulated in this manner, they miss a good 85% of  patients' issues.

I ran some chores today, and during one of my stops I ran into Joan Holden, the Head of the St. Stephen's and St. Agnes School (SSSAS, where Mattie went to Kindergarten). As most of our readers know, SSSAS was extremely supportive of Mattie and my family throughout his battle with cancer. This type of school community is not to be forgotten, and yet, when Mattie died, we lost our daily ties to the school. We have these ties in spirit always, but it isn't the same. When we lost Mattie we lost everything. It is almost like trying to rebuild your life after being ravaged from a natural disaster.

I had a lovely chat with Joan and she keeps encouraging me to write a book. I told her that perhaps that should be one of my goals for 2010. I spent a good portion of the afternoon with Ann's oldest daughter, Katie. Katie is 12, and I wasn't sure how she would feel with me being around when her mom and siblings weren't. After all, Katie is now babysitting for other families, and in many cases, she functions quite independently. Katie could have migrated to another area of the house while I was around, but she stayed with me. We both did our own things, but we did it next to each other, and she was eager to let me know the progress she was making on the game she was playing. I attempted to read a book today, but Mattie's death has greatly affected my ability to concentrate. In fact, I find I can only read in five minute increments, because my mind wanders. In order to read and concentrate now I need complete silence. This is definitely a new experience for me, because prior to Mattie I could multitask with anyone. I could read and concentrate with all sorts of things going on in the background. I truly believe this is the aftermath of living 24 hours a day, 7 days a week in the stressful environment of a PICU. Needless to say, this is a very unsettling feeling, and I am hoping with time, this agitation diminishes.

When I got home tonight, Ann called me. I think she wanted me to know that she admires the mom that I was and am. In essence, she was saying that she could see the kind of mom I must have been, as she witnesses my interactions with her children. I am not sure why her honest feedback caught me off guard. Maybe because I don't reflect on what I was able to accomplish in Mattie's last 15 months of his life. Needless to say, Ann's comments got me thinking, and I can say that these were things I most likely needed to hear. Going back to my blog posting last night, never underestimate the power of needing others in your life. One simple and beautiful comment can make a huge difference to its recipient.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "You have, unfortunately gained a wealth of wisdom about difficult situations, dealing with hospitals, doctors, fighting for patients’ rights, grief, etc. These are all subjects and situations that all of us wish to avoid as much as possible and I commend you and Peter for your willingness to continue to engage and help others who are in similar situations. This takes a special sort of courage. It is quite impossible to survive the sort of loss you suffered in isolation; that’s why so many people who don’t have good support systems are often left searching for help from hospice and other organizations; they have no family, friends or religious support to turn to. The world has changed and there are more people out there like George Clooney’s character with each passing year and I think this is very sad. Those of us who have been touched by Mattie, know better and hopefully, we will be able to bring our newfound wisdom to assist those we find in similar situations. I don’t know what the meaning of life is; I do know that what makes it worthwhile for me are the connections to family, friends and those I care about. I am sure this whole reassessment of what is meaningful now for you is painful but, I hope you can find something you feel is worthwhile and because you are such a wonderful instructor, I hope teaching of some sort is a part of it. Be gentle and patient with yourself as we go into this new year. You are always in my thoughts."

Sunday, January 3, 2010

Sunday, January 3, 2010

Tonight's picture was taken in April of 2007. Mattie was five years old and was posing in front of his bedroom door. Mattie created a paper cutout of himself in preschool, and he was very proud of this creation and taped it to his door. He added ribbon streamers, and his name. Notice next to his name is the symbol of a magnet. Because in his second preschool class at RCC, Mattie became "Mattie Magnet." The year prior he was "Mattie Moon." I find it ironic how appropriate both symbols were for Mattie.


Poem of the day: Going Home
Go rest now precious one,
Your life in eternity has just begun.
Now you can walk, your legs are brand new.
All of heaven is now in your view.
Look all around, it's all in your sight,
There will never be another dark night.
Flowers and jewels, the street of pure gold,
and all of the things that have been told.
I can just imagine the smile on your face
as you walk all around in that beautiful place.
Greeting our loved ones as you walk along,
while singing heaven's most beautiful song.
This is so very hard, but it will all be okay,
it isn't goodbye, we'll see you one day.
We love you and we'll miss you and at times it will be tough,
but as with everything, God's grace will be enough.

Peter went to visit a friend who is in the hospital. Peter and I know how difficult hospital living can be, and sometimes having a visitor can break the monotony and isolation of the days. I spent part of the afternoon with Ann and her family, and even got a chance to see Mary, Ann's mom, for a bit. However, tonight, Peter and I went out to dinner and a movie with Ann and Bob. I think Ann's is trying hard to get us out and doing something that is "normal." I certainly appreciate her daily efforts, which go without saying.

It was a good distraction for Peter and I to get out and focus on other things. However, despite attempting to do "normal" things, we no longer do or look at anything with the same lens. Experiencing cancer and Mattie's death has permanently changed us, and therefore for me the ordinary or the "normal" has now become the extraordinary. Certainly as we age, mature, and grow, we hopefully take our life experiences into everything we do. These experiences can help us understand and interpret what we are hearing, seeing, and feeling. This is exactly how I felt about tonight's movie. We went to see "Up in the air," starring George Clooney. I am a tough movie goer to please, and usually land up having to talk about a movie after seeing it to process my thoughts and feelings about it. This can either be greeted by others with enthusiasm or annoyance.

When I got home, I told my lifetime friend, Karen, what movie I saw. She asked me how it was, and I told her I liked it. But others may view it as depressing. Her response to me was her mom knew I would like it, and that I would GET IT! Indeed, I got it all too well. I felt this movie spoke to me. Sure there were parts of the movie that made no sense and weren't realistic, after all it was created in Hollywood. It we want complete realism, we aren't going to find it there. But aspects of the movie were very meaningful. Of course being a George Clooney fan helps, which I am. In a nutshell, George Clooney plays a character who spends more time flying in the air, commuting from one city to the next than in his own home, firing people from their jobs. He is contracted out to do this for various companies, and he has perfected his script and his reactions to people hearing this devastating news. He has NO personal ties to anyone, and doesn't see the need to have them. He is estranged from his sisters, and has never been married or in a serious relationship. To him these ties are baggage, that need to be removed from one's life because they just complicate matters. He makes a transformation midway in the movie, which to me wasn't realistic. But there were messages in the movie that caught my attention. One of the characters in the movie asks George Clooney, "What is the point?" Meaning what is the point of life? Why become close to and love others in our life, when in the end we are all going to die? Of course throughout the movie we are also seeing the aftermath left from George Clooney's path, after he fired people. Most of the victims had worked for their place of employment for years. They have known no other occupational life, and the prospect of being fired seems absolutely life altering. In fact, one woman completes the act of suicide (we hear about it in passing) after being fired. Though being fired from a job is not the same thing as losing a child, it is a loss. It is a twist and unexpected path in life's road that one wasn't planning for. It is a loss with real consequences both financially and emotionally, and though I have never been fired, I felt I could relate to the reactions presented in the movie. Absolute shock, anger, and depression over hearing the news. How to pick up the pieces of your life, when everything you thought or expected life to be is no longer? An excellent question which I ask myself daily.

George Clooney in the movie also was a motivational speaker, and was hired by various companies to deliver his presentation at various conferences. He brings a backpack to every presentation to illustrate a point. The point was to get his audience to visualize the baggage we carry around with us each day. His goal was to help people lighten their loads, and redirect their priorities. The backpack analogy also rang home for me. Within my imaginary backpack I carry the weight of cancer, the 15 months of watching Mattie suffer through treatment, the havoc and chaos of our lives in a PICU, and then the ultimate weight, of Mattie's death. These are NOT weights that are easy to get rid of in one's life, memory, or spirit. But this visual exercise makes me understand why I feel SO tired, sad, depressed, and unable to see passed today. Acknowledging that these weights exist do help me process and accept the feelings that I have and must contend with. I have no idea in all reality anymore what the point is in life. People have asked this existential question for centuries, it is certainly not novel to this movie, but one thing I do agree with wholeheartedly as was expressed in this movie, is that going through life and going through a crisis are nearly impossible to do alone. We are social beings, that aspect of us is universal, and Mattie's illness is the perfect illustration of the power and beauty that can result from the support and love from others. Without a doubt I rather have not experienced this gigantic loss, but I can't imagine experiencing this loss in isolation. In all reality, many of us live our lives "up in the air," with uncertainty, challenges, and questions. But ultimately what grounds us, what makes us whole are the people we allow into our lives. Others give our lives purpose, meaning, and at times carry us along when we are unable to do this for ourselves. Perhaps in our very independent society admitting such a reality is not appreciated or is scary, but having had my life turned upside down, gives me the proper perspective on the importance of others in our lives. 

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am glad you are out and about and feeling better physically. It was nice to hear about the skating party and how well the girls did with their performance. You are right, just like dancing, there are two separate aspects to performance; one is about technical performance and the other about emotion. When they are combined well you have some amazing and memorable performances even by young children. It was very nice of you and Peter to help out another family by babysitting their children; you are right that Mattie taught you how to be a good mom (I think you had the skills all along but he certainly helped to bring them out), just as you have the skills to be a wonderful teacher and mentor. I hope you continue on the path to better health and I will keep you in my prayers."

The second message is from one of Linda's childife interns. Meg became a close buddy of Mattie's, and she was his racing partner around the PICU! Mattie related to Meg very well, and she became a vital person in our daily lives at Georgetown. Meg wrote, "I know it has been so long since I have emailed you and I cannot apologize enough. I have thought about emailing you daily but I just can't seem to find the words or the right thing to say. Nevertheless, I have dug myself into quite a hole as time continues to stretch by. In true New Years Eve fashion I have unintentionally spent my day in reflection of the last year. I am pleasantly surprised to have so many memories of Mattie and you. This time last year I was scared as I prepared for my move to DC. I never thought about the adventure this decision would lead me down. It wasn't long after I started at Georgetown when I met Mattie. I remember he didn't really want anything to do with me, but I was determined to make him my friend. And I am grateful for that everyday. It is important for me to tell you that even though I haven't emailed or spoken to you, a day has not passed when you have been out of my thoughts. I read the blog religiously, and some days I have trouble reading the pain you are going through. I have so much trouble wrapping my head around it that I feel silly even trying to sympathize or empathize. I think that it is very easy for me to go through my days living down here and just pretending that Mattie is great and is still at home with you and Peter. Then, I lay my head down on my bed, look on my bookshelf and see "Super Mattie", the book, and it hits me like a ton of bricks that your perfect, charismatic little man isn't here. All I can think is "How can this be"??! I just don't understand it. I hurt so bad for you Vicki. However, I cannot forget all the wonderful times I got to have with Mattie. I have pictures of our races on my screen saver as a daily reminder of the strong boy that he was. It is his strength, courage and heart that I aspire to have. I count my blessings everyday, especially that I had the chance to meet you, Peter, and your precious boy. Mattie left a piece of himself in everyone he met, he left his legacy. I don't doubt that he is so proud of both of you for continuing to fight for him and all the children who suffer from that harrowing disease. I know this email was long winded, and mainly centered around myself (and I apologize). I have just had a lot on my heart lately when it comes to you. I have truly been changed by my encounters with Mattie. I am actually kind of scared to take a Child Life position because I can't decide if it would be a betrayal to Mattie or if I will meet another child who touches my heart and I come to love. However, I suppose that is part of the job. I don't know how Linda does it. I cannot thank you enough for allowing me to take part in a small portion of Mattie's care. It has truly changed me. His smile is imprinted on my heart forever. You and Peter are always in my thoughts and will forever be in my heart, alongside Mattie."