Friday, September 18, 2009

Friday, September 18, 2009

Mattie, six months old, showing us his third tooth that was emerging from his gum line! I love the look he has on his face, as Peter is describing what he is seeing in Mattie's mouth.

Poem of the day (Kristi, my Osteo friend, I am NOT sure where you find these poems, but they mean a great deal to me!):

The Loss Of A Child

The moment that I knew you had died, My heart split in two, The one side filled with memories, The other died with you.
I often lay awake at night, When the world is fast asleep, And take a walk down memory lane, With tears upon my cheek.
Remembering you is easy, I do it every day, But missing you is a heartache, That never goes away.
I hold you tightly within my heart, And there you will remain, Life has gone on without you, But it never will be the same.
For those who still have their children, Treat them with tender care, You will never know the emptiness, As when you turn and they are not there.
Don't tell me that you understand, don't tell me that you know. Don't tell me that I will survive, How I will surely grow.
Don't tell me this is just a test, That I am truly blessed. That I am chosen for the task, Apart from all the rest.
Don't come at me with answers That can only come from me, Don't tell me how my grief will pass, That I will soon be free.
Don't stand in pious judgment Of the bonds I must untie, Don't tell me how to grieve, Don't tell me when to cry.
Accept me in my ups and downs, I need someone to share, Just hold my hand and let me cry, And say, "My friend, I care."

Through Mattie's terminal illness, Peter and I have learned a lot about ourselves, our love for Mattie, and of course the community that we are fortunate enough to be tied to. One of the beautiful things Mattie was able to give Peter and I is the ability to connect to people, and God knows these connections now with our Team Mattie friends are what keeps us going each and every day. This has been a year of great and profound sadness, and yet in the midst of this sadness, I have learned, felt, witnessed, and experienced the power of special people in my life. Friends that even through the worst of Mattie's treatment never turned their backs on us, but only kept asking, how can we help? For all of you, I am deeply humbled, grateful, and though the hole Mattie has left in my heart is unable to be filled, your friendships keep us afloat and surrounded with an amazing gift of love.

I could write many blog postings about how each of you has touched my life in some way, but today I would like to tell you about my friendship with Ann. Ann, as you know, has been our Team Mattie coordinator and champion of HOPE for over a year. What you may not know is that prior to Ann taking on this role, we did not know each other that well. Ann and I interacted with each other at RCC and SSSAS (Mattie's schools), sat on the RCC parent advisory board, and maybe worked on a project or two, but that was the extent of our interactions. Needless to say when she took on the role of Team Mattie Coordinator, neither one of us knew what would result from this major undertaking. However, Ann saw me this year under the most challenging, humbling, and heart wrenching circumstances. She witnessed more than I care to describe, and yet never flinched, never wavered. As the months wore on, I noticed she never tired nor did she view helping us as a chore. Instead through getting to know Mattie, I could slowly see that he hooked her in (as he was SO good at!), and she too fell in love with my son. In turn, I ask you, do you think it is possible not fall in love and respect a person who deeply cares for your child? I imagine, like me, you would be saying 'No!' I comment to Ann very often that I am at times in awe of our friendship. With Mattie's death, I find great comfort in spending time with Ann, maybe because we have been united by cancer perhaps, but there are aspects of her that remind me of Mattie, and in fact, there are times I look at her and feel almost as if Mattie left a piece of his spirit within her, so that I would never forget him and that Peter and I would never be absent of his physical presence. That may sound very strange or even spiritual, but because Mattie's death is so profoundly painful, I accept any gift or comfort that remains in my life, and Ann's friendship is one of those gifts.

I tell you about my friendship with Ann, because I feel it is important that you know in the midst of shutting out the world, I am never really isolated. It also may help you understand my motivation and my commitment I have to helping Ann with her dad, who is in the process of dying. I find it fascinating about myself, that in the midst of grieving the loss of Mattie, I am also able to sit with Sully, Ann's dad, and try to help him as he approaches his end of life. Mattie taught me a great lesson about myself, my inner strength, and my courage to be able to face death head on. Something I would have shied away from prior to this year. This may sound depressing to my readers, but in all reality, it is actually very therapeutic, and I also feel that this experience of helping Sully further unites Ann and I, and in essence we are grieving for Mattie and Sully together, yet supporting each other through this very hard journey.

Last night, I went to visit Ann at the assisted living facility and stayed there to help her with her dad. Prior to visiting Ann, we were e-mailing back and forth and trying to figure out what was going on with her father. Despite the fact that you know the person you are helping is dying, as a family caregiver it is vital to make sense out of what you are seeing so that you can address the problem as effectively as possible. Educated choices are always the best choices. Some how things ALWAYS are worse at night, the patient's symptoms and of course our fears about what we are observing are magnified. The conclusion we came to after doing some significant literature searching is that Ann's dad is delirious, and with delirium can come a specific symptom called terminal restlessness. The word terminal signifies just that, you see intense restlessness and an inability to sleep in the final hours or days of some one's life. I am not sure if Ann or I knew what we were seeing prior to this unofficial diagnosis, but putting a label on it, greatly helped us moving forward. Because it enabled us to see that we need to figure out a plan to humanely treat the signs and symptoms Sully was presenting. Like myself, Ann is conservative when it comes to dispensing medications, especially psychotropic medications. However, when one faces pending death, you get the courage and stamina to do things you never thought you would do before. I saw what Peter and I were able to do for Mattie in his final hours, and I am still amazed, massive amounts of drugs were coursing through Mattie's veins. However, unlike my amazing support team at Georgetown, I find that the support given to an older adult going through the death and dying process is not equivalent. The family caregiver is really left to one's own devices. Does this surprise me? No! Does it disappoint me about our health care system? Most definitely! It is plain and simple, older adults are viewed at expendable, and it is acceptable that they should die after living a long life. Therefore, the strategies, interventions, and level of care in their final hours are less than stellar. I view the nursing team and doctors I had around me at Georgetown and then compare it to what Ann has around her at Sunrise, and I see the stark and upsetting difference.

For those of you who are interested, Sully is experiencing terminal restlessness, which is a medical term that is used to describe a form of confusion that can often occur in the last few days or hours of life. It is often associated with increased agitation, twitching, or general restlessness, and can be very distressing for relatives and caregivers. In some cases, patients with terminal restlessness may make noises like groans, moans or grunts that appear to be related to their breathing. They may not even necessarily be aware of their own behavior. Those who work with the dying know this type of restlessness or agitation almost immediately. However, the public and patient's family may have no idea what is going on and often become quite alarmed at their loved one's condition. What does it look like? Although it varies somewhat in each patient, there are common themes that are seen over and over again. Patients may be too weak to walk or stand, but they insist on getting up from the bed to the chair, or from the chair back to the bed. Whatever position they are in, they complain they are not comfortable and demand to change positions, even if pain is well managed. They may yell out using uncharacteristic language, sometimes angrily accusing others around them. They appear extremely agitated and may not be objective about their own condition. They may be hallucinating, having psychotic episodes and be totally "out of control." At these times, the patient's safety is seriously threatened. Needless to say, seeing your loved one suffering like this, unable to sleep, incoherent, restless, agitated, and confused, it is profoundly upsetting, and seeing death in this manner does make you question life and our priorities in life. As I said, Mattie has taught me about death and his courage in his final hours have filled me with strength, determination, and fortitude like I never knew I had. Mattie was my gift, and he taught me some very serious life lessons. Some of which may take me a lifetime to come to terms with.

I am hoping you can appreciate why I am sharing this story about Ann with you. It is part of my process of healing to help someone who means so much to me, and in the process of helping her, I am able to confront some of my own feelings about Mattie's death.

We would like to thank the Wright family for supporting us tonight with dinner. Thank you for all your continued efforts.

I would like to end tonight's posting with five messages I received today. The first message is from a colleague of Peter's. Eva wrote, "When you become a parent, along with the joy you become conscious of a few deep fears that cut at the core of parenting. Over the last year, you have fearlessly blogged the big one, namely the illness, treatment, and death of a child. Most of us have watched in awe as you shared Mattie’s world with us on a daily basis. The ins and outs of cancer care, the hospital, chemo, the lack of privacy, and the challenge of watching the dearest thing you have in the world leave you. I only met Mattie in person the one time while delivering dinner, but it was clear that his spirit for life was really strong. He was jumping on his grandmother at the time, and the joy in his face in spite of the cancer, and the fact that he was losing his hair and everything else was clear. I was driving my daughter and another child to a play date last weekend when my daughter asked me about the boy that liked cockroaches and bugs and how he was doing. I sucked back tears and said that everyone had tried their best to treat the cancer, but that he was gone. She said that maybe he went to heaven so that he could watch over his parents. The interesting thing is that she remembered looking for sticky bugs to give to him and wondered if there were bugs in heaven for Mattie to play with. It made me think about the comment that your friend Jey made about Mattie’s wings and I thought that wherever he is, Mattie has bugs crawling on his wings and he is probably laughing about it."



The second messages is from one of Mattie's outstanding HEM/ONC nurses. Many of you may recall that Kathleen created a beautiful Curious George plaque on one of the art therapy statues that reads, "I wish for a Mattie Miracle." Kathleen wrote, "I have scripted this email in my head numerous times, but never feeling like my words were truly expressive of my thoughts and feelings. But none the less, here it goes... I am truly and deeply sorry for your loss. Mattie was an amazing boy, a boy that knew what he wanted and how to get it. A boy that had an amazing imagination and a creative flare. Mattie was a typical boy who loved cockroaches and all things slimy and creepy. He was a boy who loved to play pranks, especially on his mother. He was a boy who loved bathroom humor. He was a boy who was bright and intelligent. And a boy whom we seemed to forget was only seven, because he was mature beyond his years. He was a boy who fought hard and endured things much harder. He was a boy who was courageous and brave. But most importantly he was a boy who was loved. Loved by his mom and dad. Peter and Vicki, I will never forget Mattie. Mattie will always be my little monkey boy. I am honored to have known him (and you both). I have learned so much from Mattie- he always kept me on my toes. And he was and always will be a daily reminder of why I went into pediatric nursing to begin with. Lately I have been thinking and wondering if I am meant to be a pediatric heme/onc nurse. I really struggled with returning to work after Mattie's death. I literally had a breakdown driving into work, then again before walking onto the unit and again when I stepped foot onto the unit. I struggled with my own feelings of life and death. I thought that everything I had been doing was a lie. How could I continue to be brave and strong for my patients and their families when I know what can happen? How can I continue to tell my patients to keep fighting and endure chemo, surgeries, radiation, etc. when sometimes the fight doesn't lead to the victorious ending called remission? How can I hold my patient's hair back while they get sick, rub their back and tell them it's worth it in the end? But then I just think of Mattie's face and I realize I am doing exactly what I am supposed to be doing. It is patients like Mattie that make me want to be a heme/onc nurse. To try and bring some fun and laughter to the life of hell that has become their life. And it is also patients like Mattie who make me want to be a better heme/onc nurse. A nurse who connects to their patients and families, and is changed by them. Vicki and Peter, as terrible as your last thirteen months have been- they have made you a catalyst, to change things for the better. You have brought out the good in people- not just nurses and doctors, but all those on Team Mattie. The stories and emails on the blog are testimony to that. I often think back to my tile I made for the wishing elephant, how I wished for a Mattie Miracle. Although God had other plans for Mattie, he did grant a miracle. Vicki and Peter I know your fight against osteosarcoma isn't over, it is just beginning. You are going to change lives because of your dedication to this awful childhood cancer. You will bring hope and faith to other children with osteosarcoma and their families. As much as we all wish it could have been Mattie, I know that Mattie is looking down on you two proud to call you his parents. Like I told you the night before Mattie passed away, never give up on each other. One of the things that always amazed me of your family was your relationship with each other. Vicki and Peter, never once have I questioned your relationship with each other. Often times, I so sadly see families fall apart because of cancer. But your relationship just got stronger and more secure. You are so lucky to have each other to share your pain, reminisce on good times, and to overcome this, which I know you will. I have learned so much from you both, and for that I am forever grateful. I am so honored to have taken care of Mattie over the course of the year, and thankful I was able to take care of him over the last few days of his life. I hope and pray that time will ease your pain, but never take away the fond memories you have with Mattie. I will never forget your son, nor will I forget you both."


The third message is from the grandmother of one of Mattie's friends from preschool. Ann G. wrote, "As members of Holy Trinity we will also place a "named brick"at Trinity from Sam, Maddie, and Ryan. The brick will have Mattie's name on it and will be placed in the garden area of Trinity and hopefully will serve as a visible memory of a little boy who showed remarkable courage both at home and at Georgetown University Hospital."


The fourth message is from a fellow RCC mom and friend. Many of you are familiar with Ashley, since she ran two prayer services this year for Team Mattie. Ashley wrote, "How to begin with words. Know that I began this email by reading the blog and sitting in a moment of silence. We are so, so, so very sorry and deeply impacted by Mattie's dying. I read the blog witness of the last hours of his life over and over. I sent it on to some friends telling them "you must read this." My friends who didn't even know Mattie were put to tears over the story and impact of his life and death.When we told Sam about Mattie dying, he sat and looked stunned. After a minute of looking gazed over, he just walked away. I checked in with him later and he started asking about what will happen to Mattie's body. Our dog, Murphy, died in the spring and we had Murphy cremated so we've already had a conversation about this as it related to a dog's life. I explained to Sam about your choice to have Mattie cremated. Sam paused, looked up, and said, "did Peter and Vicki decide to have Mattie cremated so he can go back into the world again?"Why, yes, Sam. Mattie will be going back into the world again. We are at a place and time that no one ever dreamed of or wanted, Vicki. But know that another 7 year old boy has imagined Mattie re-connected to the world."


The final message is from a fellow RCC mom, and the mom of a friend of Mattie's. Beth wrote, "No words that I type seem to be worthy. It’s taken me a full week to begin to even be able to write to you. As with so many others, I have prayed with you, laughed with, and cried with you so much these last 13 months. It seems so inadequate to say “I’m sorry”, but I truly am. My heart aches for you both. Who knew that spending 2 years at RCC with Mattie would in the long term affect the rest of my life. You have both shown such strength and love in every decision you have made and in every word you’ve shared with us through the blog that I continue to be in awe of you. And, what can one say about Mattie. He was your world, but his reach was so broad that his memory will live on. He touched so many lives that dare I say hundreds of people have been changed forever by knowing him. That smile, that thoughtful introspective way he had about him. I remember clearly one day in the block room watching Mattie and Charles building with the blocks and Mattie stepping back and just looking at the blocks and I tell you I could almost see the wheels in his brain turning as he contemplated his idea and then very calmly and assertively told Charles that if their creation was to be a skyscraper it needed to be taller than the two of them so he pulled over chairs to help them and would not stop until we got the building to be taller than either he or Charles. The fact that there are hundreds and hundreds of stories like that about Mattie can only tell how he touched so many lives even before his battle began. I must admit that I think in many many ways that Mattie’s life, although short, packed more power and impact into that short time than many do in decades. He touched everyone he met and for that you should proud. I walked into RCC yesterday and I think at that point his death hit me head on for the first time. It indeed took me a couple of hours to get myself together. I interacted with Mattie only for those years at RCC but I must tell you that he made an impression even then. His death makes my heart ache. I’m confused and sad and frankly a bit angry so I feel like if my emotions are this strong I can’t begin to understand where you are so I won’t even pretend to. I just hope that you know that you two remain important to all of us who have followed your journey through the blog and that your willingness to share your journey has touched us all in ways we would have never imagined. "

September 17, 2009

Thursday, September 17, 2009

Getting Mattie to sit still in a high chair was a feat. Food never motivated or interested him. However, in this picture, you may notice he has string beans all over his face. Right from the beginning he always LOVED vegetables, and strongly disliked sweet things!

Poem of the day (Thank you Kristi for another great one!)


My Mom is a Survivor

My Mom is a survivor, or so I've heard it said.
But I hear her crying at night when all others are in bed.
I watch her lay awake at night and go to hold her hand.
She doesn't know I'm with her to help her understand.
But like the sands on the beach that never wash away...
I watch over my surviving mom, who thinks of me each day.
She wears a smile for others... a smile of disguise.
But through Heaven's door I see tears flowing from her eyes.
My Mom tries to cope with death to keep my memory alive.
But anyone who knows her knows it is her way to survive.
As I watch over my surviving mom... through Heaven's open door.
I try to tell her that angels protect me forever more.
But I know that doesn't help her or ease the burden she bears.
So if you get a chance, go visit her... and show her that you care.
For no matter what she says... no matter what she feels.
My surviving mom has a broken heart that time won't ever heal!

This morning Peter and I met with Peter Keefe. Peter K. is a fellow SSSAS parent, and our sons were in Kindergarten together over a year ago. Peter and his wife, Debbie, have been a crucial part of Team Mattie this year. In addition, to all their wonderful meals, visits, and letters, Peter K. has offered to help guide us through the process of creating a Foundation. We met with him and an attorney today who specializes in this area. We felt very well guided and supported, and we can't thank Peter K. enough for his willingness to share his time, skills, expertise, and contacts with us. What we did to deserve friends like this, I have no idea, but I am deeply touched and honored to have Peter K. helping us and value his insights and guidance. As I was getting an education today in the world of Foundations, I began to understand that this is not only an exciting proposition to undertake, but it is also overwhelming. It takes a great deal of funding to support such a venture, and being an educator and mental health professional, raising funds and soliciting funds are not necessarily my strong suit. Fortunately I have my Peter and a wonderful support system with all sorts of skills, and what I learned today from observing Peter K., is that he is as passionate about this Foundation as we are. So whatever insecurities or doubts I have about my abilities to do this, I will address, and rise to the occasion. In a way, I feel as if this Foundation will keep Mattie's memory alive and will serve a purpose for his 13 months of intense suffering. However, as several of you wrote to me today, Mattie will always be remembered whether the Foundation is started or not. Thank you for saying that!

After we met with Peter K., we headed to have lunch together. Peter and I spoke more about the Foundation, and a whole host of issues. However, as only Peter can do, he got me to slow down and think, and as he kept talking, I started to cry and cry. At one point the waiter came over to ask us something, and he just did not know what to make out of me. There are times, I close my eyes and I try to picture what Mattie looked like, I picture those beautiful eyes looking at mine, and one of the things I truly miss is his putting his cheeks against mine. He had the softest and sweetest face, and I long to see that beautiful face again. In fact on the day he died in the hospital, I sat next to him with my cheek against his. It is something we liked to do with each other. Mattie and I had a deep love for each other, after all, Peter did not nick name Mattie "Momma lover" for no reason. It is hard to give your heart and soul to such a special being for seven years, and then not have him with me today. Where does all the love I have for him go, where do I put it? I feel a pit in my stomach most days and a deep sense of emptiness that is almost impossible to describe.

While Peter and I were at the mall today picking up some things, we observed two parents with their son. Guess what their son's name was? Matthew, and they nick named him Mattie. Perfect! As they were calling him, Peter and I both looked at each other, and of course no words were needed. Passing the Lego store was also an impossible task as well, and in the window we spotted a new fire station set Mattie would have just loved. As a parent you get used to playing and doing the things your child likes. Peter and I have been inundated with children's TV, videos, games, and toys for seven years. Now without Mattie, it is almost as if we need to redefine our interests and what we do. In many ways we are lost and trying to find our identities again!

I have forgotten about the kiosks in the mall as well, since I haven't been shopping in over a year. Today a salesperson walked up to me from a kiosk. He was selling facial creams and so forth. He started on me about how I need to take better care of my face and skin. Not only was this NOT a good tactic to take with me, but I let him have it. I told him since he was SO bold, I was going to return the favor and tell him why I hadn't taken care of myself for 13 months. I told him about Mattie and that he died. I think this was a major reality check to him! After I told him, he couldn't do enough to try to make me happy, but the damage was already done.

This afternoon, I came home and I slept for hours. I was feeling extremely fatigued and ill. The only thing I knew was going to help was to just shut my eyes. I typically don't like to nap because I have such trouble sleeping at night, but I gave in and followed what my body was telling me to do.

Tonight, I was able to order some things I wanted for Mattie's funeral, and I felt somewhat productive on that front. We want to thank the Ferguson Family for a wonderful home cooked dinner, my favorite brownies!!!, for the book, and lovely card. Thank you for your continued support, it means a lot to us!

I would like to share six messages I received today. The first message is from Mattie's oncologist. Dr. Kristen Snyder writes to me everyday, and I truly value her support. Kristen wrote, "Dear Vicki and Peter-- I went to clinic today for the first time since I saw you last. Your faces, your questions, your thoughts, your strength, bargaining with Mattie to try to get an exam : ) These things I miss."


The second message is from Miki. Miki was one of Mattie's outstanding HEM/ONC nurses. Miki always admired Mattie's creativity and projects and in fact Miki very thoughtfully gave Mattie a Lego set the last week he was in the hospital. Miki wrote, "I can't stop thinking about you and Peter everyday. Every morning, I read your blog to find out how you day had been yesterday. I can feel your pain like mine, I can feel the big hole in your heart like the one in my heart. It might take some time before you and Peter find the definite purpose and direction in your life again. But it will come, because you have each other. Thinking of you with all my heart."


The third message is from Liz, one of my former teaching assistants and former students. Liz wrote, "As so many others are, I'm just writing to let you know that I still wake up every morning with Mattie, you, and Peter as one of the first things on my mind. In fact, I now bring my computer into my baby's nursery each morning while she is playing with her mobile to read your blog. The last two pictures you have posted of Mattie have been so powerful. It's pretty ridiculous how unfair life is. I am stuck in that loop right now. One thing I wanted to share with you.I don't know if you've ever seen the movie City of Angels with Nicolas Cage but there is a part in it that makes me think of Mattie. (In case you haven't seen it, the premise is that angels are actually all around us, watching over us, and their job is to help people transition from life to afterlife.) At the beginning of the movie, there are various scenes of angels taking people by the hand and taking them on. The one scene that always struck me was Nicholas Cage with a little girl in the hospital--he has her by the hand and is leading her away when she says, "Mommy won't understand." He gently responds, "One day she will." I guess this could be taken a lot of ways but I always felt like he was telling her that one day the mom would join her daughter and understand that her baby had not been alone. In fact, she had been cared for from the moment she left her side. When you wrote of Mattie's last night, you said he looked at you at one point and said there was someone else in the room. I can't help think about that movie and think that Mattie really was being looked over by angels and had his own personal escort to heaven. And we can be sure that heaven is filled with Legos, Cupcakes, and Speedy Red. :-)"


The fourth message is from one of my wonderful former students. Julie wrote, "I just finished reading your blog and I can't tell you how sorry I am for the pain that you are feeling. I wish there was something I could do to make this better, but I know that there is not. I wanted to let you know that you continue to be my professor and educator even in your most difficult times because through you I am learning about the grieving process. Your blog is teaching me how to work with grieving children and adults. I have already used what I have learned from you in my school this year and will continue to do so. You are truly an educator! I have been thinking a lot about you and the pain that you are facing and I am not sure how you are doing it. You are one of the strongest people I have ever known and truly an inspiration to me. Through your family I have learned the importance of trust and openness. The amount of respect and loyalty that was exhibited by all of you during these trying times has been one I hope to emulate when I have my own family. I didn't get the privilege of meeting Mattie in person but through you blogging I came to have an understanding of what a remarkable kid he is. His tenacity in everything he did and his ability to trust others during the most terrifying of times spoke volumes to who he was. I have had the opportunity to work with several hundred children throughout my teaching career and now school counseling job and I have no doubt that Mattie was a unique and very special-one that every teacher or school staff that had the opportunity to work with him will always remember. He was one of those kids that leave a lasting memory and can never be forgotten! One thing I am having a hard time understanding since Mattie's passing is why has this happened to such a remarkable family. Unfortunately, I have meet several parents who I question whether they should have been parents because they don't show 1/100000 of the love and support you have for Mattie yet they have very healthy children. I know I will never find this answer, but it just seems so incredibly unfair. Vicki my friends and family are thinking about you and I have asked my dad, grandma and grandpa who have passed away to watch over Mattie and take care of him. I know they will do their part to make sure he is happy. "


The fifth message is from a colleague of mine. Martha wrote, "I could not start my day without reflecting on today's Blog. Just like so many are now expressing, my life will forever be changed because from the first day I began reading the Blog I have not been able to start my day without having your life as an inspiration to me. To know now that you will establish a foundation to continue that inspiration for all of us makes me feel calm and assured that you will use the talent you have to provide us with outlets for the growth we have known through your sharing of this journey you and Peter and Mattie have made this year. At this moment, I feel particularly moved to encourage work on changing the way hospitals -- all individuals ones meets there -- to understand and care about the individuals who come through the doors seeking relief from pain and suffering. This seems so basic to speaking to what you all have suffered, and what each of us who have experienced personally, that it is a place I can help. Some few give exemplary care, while most make your pain and suffering worse or even make you feel guilty for being there! There are many ways I can likely help you carry out the goals you will set for Mattie's foundation. I look forward to having a way to fulfill my need to help in your cause. Thank you for your selfless desire to share your love for Mattie; your skills developed through years of living, loving and training; and your brilliant Vicki-self. Your love for Mattie and his continued presence with you will lead you to help all of us who have joined you in this year of sadness to make the world a better place for all who suffer. "

The final message is from one of Linda's former childlife interns. Laura wrote, "Words can not express how sorry I am that Mattie is no longer physically here. It is truly amazing to hear about all that he taught EVERYONE he met and so many people that he did not even know him personally. The dedication you had to him and continue to have, the community, maintaining relationships and normalcy as best as possible, communicating what you all need and do not need, thinking of others even during the toughest of tough times, and the way you even continue to keep everyone informed of the struggles and the good times, Mattie’s legacy will outlast all of us that ever met him. I hate to imagine families feeling distraught, lost for comprehension, not knowing where to turn upon a diagnosis of osteosarcoma, but there will unfortunately be more families and I can foresee them finding resources through your organization and finding hope, strength, courage, and support. I’m glad there are pediatric medical subspecialties and support services, like child life. Children are not just mini-adults like once thought. However, in many ways children and adults do have similar thoughts. I hear parallels between the story you wrote about with Dr. Biel telling you how Mattie enacted a scene where only Brandon and Jocelyn were allowed in his world, and how you are saying your world is the PICU now. Mattie understood these concepts and explored where he belonged through play, yet at many times, he also often enjoyed and welcomed the company of the world outside the hospital, including welcoming in new people like me, but more importantly, his friends even when around the same time he was expressing not fitting in with that world, he still laughed and existed almost simultaneously torn in multiple directions. I can't say I understand how you feel, but the descriptions sound a lot like how Mattie felt, the pain that extends long past the physical scars but is eased through family and friendship. I think back to the post Vicki wrote about how you looked up and saw Cody’s tile on the ceiling of the Lombardi Clinic and the feelings that evoked in you, and how for a very long time many people will feel seeing Mattie’s work and the laughter that ensued his accomplishments after he worked with such diligence and precision and decorating, making the hospital space as home-like as possible. Each patient and family teaches everyone something unique and beneficial, but through your dedication to the blog we have all learned how to be better professionals, people, friends, family members, and citizens. Mattie’s passing makes me sad, I had this dream of him beating all the odds, I think we all did, but he isn’t gone, I don’t think he ever will be. We all see him in boxes, in the worms, in cockroaches, in the Legos, in balloons, in music, in fighting through tough times, in hard work, in hope, in whispers, in surprises, in laughter. 100 years from now, when everyone that knew Mattie has joined his company, I believe people still on Earth will know his name because of the lessons he has taught all of us, the way he continues to evoke emotion in all our hearts, and the way so many people especially you and Peter are leaving his legacy. Mattie is always going to be a part of me. Thank you for raising Mattie in the way in which you modeled advocacy, parental love, courage, strength, and hope and continue to teach the lessons he taught us with your help."

Wednesday, September 16, 2009

Wednesday, September 16, 2009

Tonight's picture captures Mattie's first trip to The Outer Banks of North Carolina. Mattie was very intimidated by the ocean at first, however, after exposing him to the beach three summers in a row, he began to love it. In fact, playing in the sand became one of his favorite past times!


Poem of the day (Thanks Kristi!):

THINKING OF HIM by Robert E. Selle

Stepping on Shore
and finding it Heaven!
Of taking hold of a hand,
and finding it God's hand.
Of breathing new air,
and finding it celestial air.
Of feeling invigorated,
and find it Immortality.
Of passing from storm to tempest,
to an unbroken calm.
Of waking up and finding it Home.


Peter and I live quite a life. I go to bed at 3am, and he seems to wake up at 3am. Why, you may ask? Because this was our pattern in the PICU. I watched and played with Mattie until the early hours, and then would be exhausted, and Peter would wake up and take the next shift. Our bodies are just used to this very unhealthy pattern. Peter ran some chores this morning, and I was visited by Blanca. Blanca has helped me clean our home this year because I neither had the time or the desire. Blanca saw Mattie during various stages of his treatment this year. She continued to pray for him throughout. When she saw me this morning, she told me she had something to talk to me about. She learned about Mattie's death through my neighbor and she wanted to tell me how sorry she was that Mattie died. She then gave me a hug, but instead did not let me go. It was interesting, I guess it is what she said, or how she said it, or basically that she hugged me and did not let go, but I landed up crying. I was crying, she was crying, and for that moment in time, I almost felt as if Mattie was with me, right there in the kitchen. As if he was watching this whole scene that was unfolding. In fact, it was almost like a spiritual experience, because I felt as if Mattie for that brief period was trying to communicate to me that he was okay.

Peter and I had a lunch meeting with Ann and Alison to discuss funeral arrangements and plans. As you all know, Ann is our Team Mattie Coordinator and Alison is our Mattie Fund and Communications Coordinator. These women have helped us through 13 very long and painful months, and yet are still there for us. Their efforts are tireless and unrelenting, so much so that they are committed to helping us with the final part of our journey, Mattie's funeral. I can imagine that for Ann and Alison, today's meeting was difficult. After all they united together and created Team Mattie in hopes of returning Mattie to health, and devoted countless hours and most importantly their hearts to this endeavor. So the question is, how does Team Mattie move on to this next phase of helping us? This is a difficult question, but clearly one in which the Team is attacking straight on. Peter and I deeply appreciate the generous help and support being offered to us from both SSSAS and RCC families, and I am truly touched how our communities remain steadfastly behind us. So you maybe asking yourself, how was it to talk about the initial plans for Mattie's funeral? It was very surreal. After all, I do not think any parent should have to lose a child, much less have to think about a funeral, and ways to memorialize a child. There is SO much I want to say at the funeral, and yet at times I am at a loss for words. I have spent an entire year writing each and every night, and though I was going through a different type of hell this year, my writing just flowed. It was easy to report about Mattie, our reactions to his treatment, and our fears of living with cancer. Trying to write about our grief and about our next steps are far more complicated. I think primarily for me it is complicated because I myself am so numb and in shock. I am not in touch with my emotions completely, and therefore being guarded affects my ability to think and process my feelings in a written format.

One conclusion I finally came to peace with tonight is that there is no right or wrong way to grieve. I say this because I have been trying to analyze why I am not in a puddle of tears each day. Since crying is usually something that comes naturally to me. But I have been reflecting on how I have dealt with other losses in the past, for example, the loss of my maternal grandmother for example. I was extremely close to my grandmother, after all she lived with my parents and I since I was a baby and in many ways I always felt like I had two mothers growing up. When I lost my grandmother, upon reflection, I reacted the same way as I am doing now. I did not do much crying, but you know what I did instead? I spent my entire graduate school career researching the topic of strokes and family caregivers, and then wrote my dissertation on this subject matter. For me, grieving means action. I must do something, help someone, be proactive. It is funny how I just came to this revelation tonight, and never thought about it prior to Mattie's death. Though I loved my grandmother dearly, losing Mattie is a very, very deep and profound loss for me. So though I consider myself a very emotional person, during times of great stress and trauma, this side of me goes into hibernation until I am ready to deal with the emotions on my own terms. So in line with my action plan during my grandmother's death, I have an action plan with Mattie's death. I want to create a Foundation as soon as possible, and I want to begin brainstorming ways to help finance Osteosarcoma research and to me most importantly find a way to meet the psychological needs of patients and families with Osteosarcoma. Which I assure you is severely lacking. At times I pause and I wonder if Mattie is looking down at me and wondering why his mother isn't crying? Why I seem, with emphasis on SEEM, to be able to function? But then I pause and I realize my Mooshi Moo knows me better than I know myself, and he knows that I miss him terribly, that each day without him is not the same, and it is my hope that he would be proud of the fact that Peter and I want to help others who are plagued by this horrendous disease.

Peter has been working on developing our Foundation's website. It is already looking great, and I am so thrilled Peter has these technological skills! I have noticed lately that Peter has acquired many new items, such as a new printer with a scanner, and so forth. I am beginning to see that Peter has given Mattie's Foundation a lot of thought and is figuring out ways to get us up and operational from home. The Foundation is most definitely something we both are passionate about, and I can't think of a better way to keep Mattie's memory alive, then by helping other children and families with Osteosarcoma.

We would like to thank the Bartlett family for a very generous dinner. Thank you so much for supporting us throughout this year, your kindness won't be forgotten.

I would like to end tonight's posting with five messages. The first message is from a fellow SSSAS mom and friend. Tanja did share information about her daughter in this posting, and her daughter, Katharina, gave me her blessing to post this message. Tanja wrote, "What I am writing to you today is not meant for you to feel bad about how I or my family feels about Mattie and his death. It is meant to let you know that we are thinking of you and you are not alone in your grief. We all have to go our own path and deal with our own grief- and we will. I feel very blessed to have gotten to know Mattie and you and feel honored to have been able to be part of his and your journey. THANK YOU! Well, if yesterday was an epiphany day for you, today was certainly one for me. I don’t know how you felt today but today has been one of the hardest for me since last week. I woke up this morning and immediately thought of you and Mattie and that it was a week ago today that he died. I have been thinking of Mattie and you all week – just like I had been for the last 13 months. But today was hard – almost harder than when we learned about Mattie’s passing. I was irritable and grumpy all morning and throughout the day. Both, Tyler and Katharina commented how short and rude I was. In truth, I was just covering up the tears I was crying inside. I am a very private person myself and often when I am very upset I will pretend I am fine. Today, I did a horrible job in covering it up. Earlier tonight I was sitting at the computer; tears were running down my face. I should have been fixing dinner, preparing lesson plans and doing all sorts of other things. But nothing seemed important. I just sat in silence and reflected on Mattie and you. I have only known Mattie for a short time of his life, but he certainly got me hooked, too. If I am such a mess, I can’t even imagine how you and others who have known him for longer must feel. I know I will never forget him and always love him; his beautiful smile and most of all his expressions when he was up to something. I also was able to gain a deeper insight into how Katharina has been dealing with her grief. We were at Target today and out of the blue she said (and that is when I almost lost it): “I miss Mattie!” There are so many things here in the store that remind me of what he liked and I would love to buy it for him. Then I realized that he is dead.” That was it. But only for a few hours. We got home and she did her reading but was down and didn’t even want to watch TV (her favorite activity other than sports). She then said she was tired and wanted to snuggle with me. She just did not seem herself and on a hunch I asked her if she was sad that Mattie was dead. She said yes, but she did not want to talk about it because it hurt too much. Thankfully, the silence did not last long. She cried a few tears but than channeled her hurt into an action plan. She thought of many ways on what she could do to prevent other children and their parents to feel the hurt she is feeling again after losing another friend to cancer. One of them was of course (as I mentioned in my previous email) to give you some of the money she has saved up to support research in cures for osteosarcoma. In her words: “I know it won’t be much but at least it is a start. It can’t be soon enough to find a cure for cancer.” She also wants to have a special savings container to save up more money for cancer research. After a few more minutes she all of a sudden thanked me for introducing her to meet Mattie and how glad she was to become his friend; despite the hurt she feels right now. She realized that she did not know him for long but from the beginning she felt that Mattie was like a cousin to her. She also said that she was sad that he died but she is grateful and happy that she got to know him. He was very special to her. At Target she also bought a “Puffle Puff”; some sort of stuffed creature (more a face than anything else). I’ll attach a picture of it. She named it Mattie because its expression and smile reminded her of Mattie. Thanks again for allowing us into your life and be part of your journey. Mattie will NEVER be forgotten. He will continue to make us cry and laugh – often at the same time."

The second message is from a fellow Lombardi Clinic mom. Cathy and her family have been very supportive of us, and we are grateful that we met them. Cathy wrote, "I have taken too long to try and find the right words when there are none. That any child should have to battle this disease is tragic but to have fought so hard and lost is unthinkable. Anyone who met Mattie would agree that he was a special boy; a bright, creative, and loving spirit. It is obvious that his parents had much to do with the creation of that special person. I feel honored to have met your whole family and touched by the caring and courage that you have shown to all. Throughout this whole ordeal you have managed to show your compassion for everyone else by posting information about Mattie’s struggle as well as baring your heart and mind. It takes a lot to endure what you have and still be thoughtful enough to keep those who care updated through every step. I thank you for sharing your journey. You are one of the most thoughtful people I have ever met. You may use my comment however you wish and know that I am truly in awe of your empathy and graciousness. If it is at all possible it makes me cry even more over Mattie's passing because I know how much like you he was. I follow your blog daily and will stay in touch. I wish you peace and long nights of sweet dreams in the future."

The third message is from a young lady we met on the morning of Mattie's sternotomy. Linda (Mattie's childlife specialist) asked Dana to come in to juggle for Mattie right before his surgery. Mattie actually loved watching Dana that morning, and it put him in a good mood. Dana wrote, "I’m Dana, the juggler Linda brought along to help entertain Mattie before his surgery in June. To be honest, I thought about writing you an email several times before, but I never followed through for fear that it would come across as presumptuous or overly forward, especially since I only met Mattie for such a short time. But since you expressed in your blog that you want people to write, I wanted to share with you the lasting impact Mattie has had on me. The morning I came to the hospital to meet Mattie, I left my house stressing over school, exams, and petty problems in my personal life. On the walk over to Georgetown Hospital, I spent my whole time worrying myself sick over the fact that I might not get into a top-ranked law school. But in that short time that I met Mattie, I felt my whole perspective change. I realized that all the problems I build around myself on a daily basis to occupy my time stressing and worrying about nothing are completely self-indulgent. When I walked into that hospital room, I saw a an adorable and brilliant little boy with the whole world ahead of him fighting an illness that no one deserves, but least of all him. And I also saw an amazing family between you, your husband, and Mattie- the kind of family people would give absolutely anything to have in their adult lives- so unfairly forced to deal with the worst case scenario, the worst thing that could happen. And yet I saw that you were all living, loving, smiling, and making the absolute best of the moment. You’re all tough as nails, and there I was having spent my whole morning playing “woe is me” over absolutely nothing. It made me feel provincial and short-sighted. It made me see that I need to change- that I need to appreciate life just for being alive. That I need to appreciate life for what it is and not stress over what it isn’t. That I need to see the privilege associated with having the time to worry about things that don’t matter. That I need to realize the “daily grind” isn’t an excuse to have a pity party, but rather a chance to appreciate the peace of the status quo and the beauty of the moment. Mattie showed me that life is a gift in a way that goes beyond anything anyone could ever tell me. Of course I’ve heard it said so many times, but it takes someone like Mattie to make it real. Mattie has given me a new perspective on my life, and I can’t thank him enough for that. I can promise you that even after meeting him for such a short time, I’ll never forget him and that I’ll take his memory with me as I go through life. You’re in my thoughts. I admire your incredible strength and I thank you so much for sharing Mattie’s story through your blog."

The fourth message is from Mattie's clinic buddy, Jocelyn. Mattie loved Jocelyn, for many reasons. Jocelyn also has Osteosarcoma, and Mattie could really relate to her. Thank you Jocelyn for having the courage to write to me today. Jocelyn wrote, "I have started and stopped this email about a dozen times since last Tuesday. I cannot believe it has been a week in this world that Mattie has been gone. There are no words to encompass the loss you and Peter have endured or to make it any easier. Yet I also feel like there is so much I want to say. First I want to tell you about my afternoon at clinic. A few of us that were close to Mattie met in clinic today and did an art project in his honor. Jessie and Jenny organized the afternoon so that we could create something to leave in clinic that would always remind us of Mattie. We ended up making a box (of course) with the clinic art table and all of us sitting around it with Mattie. Maya directed the project for the most part, while I built it. This whole scenario was not only in honor of Mattie, but also made me miss the moments with him when he acted as the engineer, and I as the builder. I knew Mattie for less than a year and some how your amazing son managed to touch me in every way. The second thing I want to tell you is that I am SO ANGRY. I am really angry at this disease that has taken so much away from all of us. I am so angry it took Mattie. I guess I want you to know that because although I can never understand or feel what you and Peter are going through, I think the part that I can understand is the anger you have towards this horrible disease. Along those lines, I want you to know that I am very interested with helping with the foundation, in channeling my anger into helping others with osteosarcoma. This cause is so close to my heart for so many reasons. As so many people did, I loved Mattie and I miss Mattie. Above all else, I wanted to tell you that."

The final message is from my mom. My mom wrote, "I acknowledge that I have a dull ache in my heart for which there is no remedy. I continue to recall many happy moments of the past and routinely wake up and go to sleep with Mattie on my mind. So it was not surprising that this morning when I woke up at 4:00AM, I looked out my window and saw a brilliant Mattie Moon shining back at me. Alongside the moon was a brilliant star, all aglow like a stunning diamond against a deep blue sky and its fire and sparkle stood out against the inky background surrounding it. It was so spectacular a sight that I took it as a signal from Captain Mattie that he could see us from up above and was shining his star power for the world to see that he is NEVER far from those of us he left behind. I believe some magical power awakened me from sleep just so I could "see" my bright little Mattie Angel last night!"

Tuesday, September 15, 2009

Tuesday, September 15, 2009

I thought it would be appropriate to post Mattie's birth picture tonight. Mattie was born on April 4, 2002 at Virginia Hospital Center. A week ago today Mattie died, and I am hoping despite this great sadness, we can reflect on the beautiful baby that he was and always will be.

Poem of the day (Thank you Kristi!):

TRY TO UNDERSTAND by Susan R. Shipman

Last night while I was trying to sleep.

My son's voice I did hear

I open my eyes and looked around,

But he did not appear.
He said, "Mom, you've got to listen,

You've got to understand

God didn't take me from you, mom

He only took my hand.
When I called out in pain that night,

The instant that I died,

He reached down and took my hand,

And pulled me to His side.
He pulled me up and saved me

From the misery and pain.

My body was hurt so badly inside,

I could never be the same.
My search is really over now,

I've found happiness within,

All the answers to my empty dreams

And all that might have been.
I love you all and miss you so,

And I'll always be nearby.

My body's gone forever,

But my spirit will never die!
And so, you must all go on now,

Live one day at a time.

Just understand-God did not take me from you,

He only took my hand.

This morning I received an e-mail from Mattie's doctor, Dr. Kristen Snyder. She acknowledged that a week ago at 7:15am, Mattie died. Her exact words were, "No day since has been the same." I couldn't agree more with Kristen. As seven days have past, I can't say I feel any better, that I am accepting this news any more, or that I am seeing a way to manage this pain, and continue on with our lives. Mattie has left a permanent hole in our hearts, lives, and daily routine. Peter and I are lost, directionless, and looking deeply for meaning and purpose to our lives.

As is typical for me, I couldn't fall asleep last night. Despite having full days, without napping, I can't seem to shut my mind off and go to sleep before 3am. I continue to wonder how I actually function on such little sleep, but I do believe that living under constant and intense stress for over a year has programmed my body to be in a hyper alert mode. I think it will take me several months to return to some sort of normalcy with sleep. I find at night, my mind drifts to Mattie, and all the things I miss about him. Our home is empty and the silence is deafening at times. His things are all around us, his art work is everywhere, and his Lego creations line every part of our floors.

This morning, I had the opportunity to meet up with Ellen (Charlotte's mom) and Christine (Campbell's mom). Last week when we had lunch together, they suggested that we meet weekly to walk and reconnect. Since I haven't had any physical exercise in 13 months, the notion was welcomed. Of course for me letting others back into my life is also a major step forward because I continue to find as I interact with more people, I realize just how PROFOUNDLY different my world is. Of course being different sometimes is a good thing, but in our case being different as a result of cancer ravaging our life, is a completely different story. It was nice to chat with Ellen and Christine and to exchange stories, feelings, and thoughts, however, after an hour of walking, I had absolutely had it. Every aspect of me was tired by that point. I can see that staying up late and balancing Mattie's care has taken a toll on me emotionally and physically. It is my hope that with each week of walking, that I reclaim more of my physical energy back.

After walking, I met with Ann and her parents. Catherine, a mutual friend of ours from RCC, was also visiting Ann. Catherine and I hadn't seen in each other in a while, so we had the opportunity to reconnect and to also talk about Mattie and our families. So in a way, today was a day about reconnecting, trying to find one's self again, and it was also a day, where I learned more about the impact Mattie has had in other people's lives. All I can say is Mattie was a remarkable fellow and he was only 7, yet he clearly made a lasting impression on all those he knew.

I had the opportunity to hear from two women today that I have gotten to know over this year. One is Chris, Sammie's mom. Many of you are familiar with Sammie's story. Sammie is a beautiful teenager losing the battle to Osteosarcoma in California. I also heard from Kerry, who was a mom I met at Georgetown's PICU. Six months ago Kerry lost her son, Finn, to a battle with Cystic Fibrosis. Both moms e-mailed me to let me know that they understand EXACTLY how I feel. They both have isolated themselves from the world, and they too admit to the impact that their sick children has on their lives and relationships. Not that I am happy to hear this news, I am actually greatly saddened that so many other parents are out their suffering like us, but I guess I found great strength in hearing that I wasn't alone. Especially since I am not a person to typically isolate myself, nor am I a person normally at a loss for words.

I was e-mailing my lifetime friend, Karen, back and forth today. She always checks in daily to see how I am spending my day. Karen understands right now that I need to do whatever it is that helps me "function." I like her word, 'function,' because that is the best description I can put on how I feel about my life now. I continue to be very grateful that Peter is on compassionate leave. Because we need this time together, and I find it really does take a concerted effort each day to wake up, get things done, and try to live a life without Mattie.

We would like to thank the Tilch family tonight for a wonderful home cooked dinner, and I can't thank you enough for adding another green friend to our home. We appreciate your continued support of us!

I would like to end tonight's posting with three messages I received today. The first message is from a former student of mine. Laura wrote, "I have been reading your blog for many months and was so sad last week to read about Mattie dying. I know there are no words that I can say to ease your pain, but please know I will continue to pray for you. I have been debating for days of what to say and there is nothing I can say. Every day I read your comments and am moved to tears. I am inspired by you and Mattie. What a courageous little boy and mother you are. When I used to sit in your class, I had the highest regard and respect for you. But, over this past year, I can't even express how you have impacted my life. I am moved by who you are as a person and mother. You and Mattie amaze me. You two have taught me lessons about life from afar. I know nothing to make life better, but I promise you, you have many angels watching out for you, Peter, and Mattie. I hear your pain and feel it when I read the blog, but nothing compared to what you and Peter experience each day. Thank you for sharing Mattie with me and the rest of the world, what a treasure he is."

The second message is from one of Mattie's preschool teachers at RCC. Lana wrote, "Like so many of your blog "followers" and people who loved Mattie, I too, have had trouble putting my many feelings into words....but here goes! Actually, a lot of your experiences reminded me of my father's passing from Mesothelioma, the asbestos related lung cancer. The fluid filling his abdomen, the pain, but mostly the "death rattle." I tell people that at one point in his final hours, I went in the hallway to escape the sound but it was like Poe's "The Telltale Heart," echoing off the walls. Then this morning's beautiful picture of Mattie in the snow, really hit me. I calculated when that photo would have been taken...December '02. My Dad died on December 1, 2002 in Kentucky. That was the snow storm that we had to outrun to get home. We left Kentucky at 4AM, and got home just in time to be snowed in. Friends had left flowers and soup....two things to warm my soul! I've always loved how we in this area just slow down when it snows, and that was just what I needed. Last week when the awful news came, I went to RCC, a place where I knew I would find some of my colleagues, and a place where I would find support. After some tears, Margaret and I began sharing our "Vicki" memories! First, of course, was the gingerbread houses! Another for me was our first conference, when Margaret opened the meeting by saying "First or all, we are so happy to have Mattie in our class!"...and you burst into tears! (We actually had 2 Mom's burst into tears that morning....both for "good" reasons, but it still made it a memorable day!) When we hear that a new student is coming to us after a difficult year in another school we are sort of on alert. And as so frequently happens, we find ourselves looking at each other in a puzzled way saying "whaaat?" So began the year of having our Mattie helper arrive a little early, always with something to share....his new shoes, a pocketful of acorns, or a beautiful dandelion! I have to also acknowledge my favorite Peter memory.....the work session on RCC's mission statement. I don't think it would be a surprise to say that the teachers were not thrilled with coming in on a Saturday morning! But Peter was so passionate he drew us in. I remember thinking, "sheesh, this family has already "moved on", and here they are, still supporting and championing what we do here". While I will tell anybody that I have the BEST job in the world, seeing Peter's enthusiasm that morning, made it even better! In closing, of course, I've been having many Mattie moments. I keep coming back to one I wasn't even a part of but that stays with me. It's his art teacher remembering the day he painted his Mattie sun painting. Of course, the sun motif reminds me of RCC, and the way she describes his dancing, and his spirit, and then his knowing when it was "perfect, and done"...it's just the most beautiful vision, and sums him up. Though in my heart, he will ALWAYS be my "Mattie-moon."

The final message is from my mom. My mom wrote, "Can it be that a week has passed since we lost our dear Mattie? It is as though time has stood still even though the world has moved on to other things. Our hearts are broken in a way that can not be healed by the usual worldly solutions to our daily concerns. Perhaps with the passage of time we can someday come to grips with our great loss and turn it into a positive remembrance of all the beauty, love and happiness Mattie's life brought to each of us in the short time he was with us. Maybe that is why Mattie's smile lingers on forever in my heart, long after we said goodbye!"

Monday, September 14, 2009

Monday, September 14, 2009

This was Mattie's first Christmas picture. It was taken when he was 7 months old. It was the first snow for the season, and literally we dragged Mattie's entertainment saucer outside on the deck to try to capture a picture for our Christmas cards. I remember covering the saucer with a blanket, and dressed him up as Santa's elf. Since he was 7 months old, I assure you getting him to look at the camera and smile was a MAJOR project, but one I will always remember!

Poem of the Day (Thank you Kristi, my Osteo mom friend in Nevada, thank you for falling in love with Mattie):

REMEMBERING A LOST CHILD by Elizabeth Dent

Go ahead and mention my child
The one that died, you know.
Don't worry about hurting me further.
The depth of my pain doesn't show.
Don't worry about making me cry.
I'm already crying inside.
Help me to heal by releasing
The tears that I try to hide.
I'm hurt when you just keep silent
Pretending it doesn't exist.
I'd rather you'd mention my child
Knowing that he has been missed.
You ask me how I'm doing
I say "Pretty Good" or "Fine."
But the healing is something on going
I feel it will take a lifetime.

Today was a day of many revelations! I started out tonight's blog with a poem I received from a fellow osteo mom, who lives in Nevada. Kristi and I have been writing to each other for months, and following our children's progress through our respective blogs. Kristi sent me the above poem a few days ago, and I knew it would strike a chord with me when I was ready. Today was that day. Between this poem and many e-mails I received today, which you will see below, I began to see that I do need the emotional support from others. I do need to hear how you all are feeling and thinking about Mattie's death. In fact, though I am a private person (which certainly you wouldn't think after this year of blogging my heart out!), Mattie's death is NOT a private affair. Mattie affected an entire community. However, I live my life in isolation right now, out of choice, and I am sure when I am ready I will slowly break down the invisible walls of protection and let others back into my life. But at the moment, I feel lost, confused, angry, deep sadness, and at times depressed. These are things I am trying to get a handle on before having open dialogues with others. At the core though, as I said I am a private person, and therefore my intense grieving and crying is just that, it takes place in my own time and space.

Throughout this 13 month ordeal, Mattie went through many phases in which he wanted family and friends in his life, and then of course there were the times in which the world was shut out. Toward the end of his life, the past several months, Mattie shut out most of the world, and in essence Peter and I were forced to do this as well. Mattie kept Peter and I not only busy but he controlled how we interacted with each other. Mattie did not like hearing noise, talking included. So Peter and I have learned to operate with each other, without saying a word. We have lived in silence now for many months. I let you know this, because caring for Mattie deeply affected our relationship. Not that we can't recover from this, we certainly can, because at the core Peter and I are the best of friends, and have known each other longer than I care to reveal! However, for us the aftermath of Cancer is huge. We lost our son, but we also have lost touch with ourselves and each other. As we begin to reconnect and learn to talk with each other again, I am sure that will translate down to our friendships.

I want to share an e-mail that I started my day off with. Dr. Kristen Snyder, Mattie's oncologist, writes me EVERY day since Mattie's death. She is quite aware that Tuesday marks a week that Mattie will be gone from our lives. Here is what Kristen wrote, "Dear Vicki and Peter, I feel like today should be a normal day. I woke up this morning and Mattie crossed my mind...before anything else. And my realization that today is hardly normal for even me. And I can then only imagine how your lives now lack 'normalcy.' As you struggle to come to grips with all that happened, know that we too are trying to come to grips with it as well. I hope you feel our collective strength in this struggle."

Kristen, along with many other e-mails I received today, opened my eyes to the very real fact that others are pained and suffering right along side us. Not that this brings me joy, it certainly doesn't, but I am human, and I feel the great need to know I am NOT alone in my feelings and that perhaps there is a reason Mattie suffered and battled cancer for 13 months (not that any reason in my mind is sufficient). I do not want to think Mattie's life was for naught, and I think I am even more troubled to think that Mattie will be forgotten. So Kristi's poem, Kristen's e-mails, and all the other feedback I received so far today, made me pause. I paused because for once I realized what I needed, what I could ask Team Mattie for right now. I told Ann, it was like an epiphany today. What I need, if you are comfortable to do this, is to share with me your thoughts, feelings, and reactions to Mattie's death. As you will see in one of the e-mails below from Anne (a mom of a friend of Mattie's), she shared her daughter's reaction to Mattie's death. I try to protect the thoughts and feelings of others on this blog, and will only publish something if given permission, especially if the content is personal in nature. I just want to assure our readers that Anne freely shared this touching information about her daughter, Elizabeth. I thank all of you for writing today, and helping me to see that though I live my life in isolation, that doesn't mean that you are not feeling my pain, hearing my heartache, and profoundly changed from Mattie's death. Thank you for opening my eyes to this today!

This morning I began to go through my electronic photo albums. For Mattie's funeral reception, I would like to be able to share photos throughout Mattie's life with you, however, I have HUNDREDS of photos to sift through. This is a HARD task for me. I started opening up the photo files, and got through maybe one month of pictures and I had to shut the computer down. It was too intense for me, and I wasn't able to manage this. So I realize I need to take this picture project in steps. I started looking at baby pictures, and it is impossible to believe that a healthy baby could develop osteosarcoma at age 6 and then die at age 7. Something just doesn't seem right about this!

Peter and I have also been struggling about what to put Mattie's ashes in. We debated about urns, or even something whimsical like putting Mattie's ashes in a Lego creation he made...and the list goes on. However, in the end, I wasn't at peace with ANY of these decisions. Then it hit me today. I want to put Mattie's ashes in a beautiful Italian made music box. As a child I spent many summers visiting relatives in Italy. Italy is known for many things, but one of the things that I most admired in my visits were the beautiful marquetry (in laid woods) music boxes. They are hand crafted, intricate, made from beautiful woods, and play music. As we all know, Mattie was a work of art, created beautiful things, and loved music. I am hoping Mattie would be happy with my choice. Peter knows how I have been agonizing over this, so he was happy I came to peace with something. The irony is I made my decision on the music box and then my mother wrote me an e-mail later in the day suggesting the same thing. Literally my mom and I were on the same wavelength, and we are thousands of miles away from each other. This only solidified in my mind that the music box will be an excellent choice.

We would like to thank the Bugg family for a wonderful and delicious lunch. Thank you Marilyn for the quiche, wonderful fruits, and amazing lemon bars. We also want to thank the Keefe family for a wonderful home cooked dinner. We appreciate your steadfast support and kindness. We appreciate the meals that everyone on Team Mattie provides us, and we are truly grateful for this commitment and level of support you give us.

I would like to share five messages I received today and end the posting with a poem. The first message is from a colleague and friend. Melissa wrote, "It is time for me to at least attempt to convey my deepest sympathy and sorrow for the loss of your dear Mattie. It has been difficult for me to confidently think about or seriously attend to anything else this past week, for you and Peter and Mattie are at the forefront of my mind. My heart aches for your loss. My soul and my mind cry out to God, "Why!?!" I simply cannot comprehend it. Mattie has touched me deeply. I am forever changed because of his spirit, and because of the spirit that you and Peter displayed throughout the torturous battle, and because of the spirit that was displayed by others as they have tried to support and comfort you. It has awakened an awesome and mighty spirit within me as well. It is a spirit that rejoices in the awesomeness of a remarkable love between parent and child. It is a spirit that marvels at the incredible courage you show to face another day and somehow find ways to see beauty in some things amidst your disbelief, anger and despair. It is a spirit that is like a soft wind that constantly whispers to me to enjoy the "Mattie Moments" of my life, live for what is most important, and find a way to do the things that matter most or at least try to live each day being fully present in the moments that matter. A dear childhood friend and classmate of mine, Julie, died when she was 7 years old. Despite my anger, confusion and questions to God, I somehow still believe in and hope for Heaven. And though I have no idea what it is like--I'd like to think that my friend Julie has been part of a 'welcoming committee' for Mattie. I envision her greeting him with her huge smile, her infectious laughter and with an armful of her favorite flowers, blue bells, and then they run off to play, frolic and explore joyously in their now perfect bodies in paradise. Julie died nearly 28 years ago and yet her spirit and memory still live on for me. I am certain that will be the case with Mattie and the children who were blessed to be called his friends. I am eager to join you in some small way via whatever vehicles and means you establish to honor Mattie's memory. Thank you for continuing to so bravely and honestly share with us via the blog. You do not yet even know the awesomeness of the impact that that gift alone will have on others' lives, though I pray that it (and others) will be revealed to you in time."


The second e-mail is from a fellow SSSAS mom, whose daughter was a friend of Mattie's. Anne wrote, "I wanted to write to you to share a few stories. First, the obituary was beautiful. Rich and I both sat at the kitchen table with tears streaming down our faces. I want to relay the story of how Elizabeth is handling the news of Mattie's passing. It has taught me so much about my daughter and speaks volumes of how wonderful Mattie was. Elizabeth has known that Mattie was sick. We have always included Mattie in our grace at dinner, "God, watch over Mattie . . ." But we did not discuss his decline. We opted to wait until after he died to talk to her. I still think this was the right decision for her, but it was hard. On Tuesday, we told her we needed to talk to her and we went up to her bedroom. I told her I need to talk about her friend Mattie. She excitedly said "yes." I explained that he had been very sick, that the doctors did everything that they could and Mattie fought as hard as he could but that he had died. Her face instantly transformed and was the saddest I had ever seen. Her only response was, "he what?" That night she did not speak another word about it. She just sat and thought. We put her to bed and she fell asleep. The next night, I talked to her and asked about Mattie. She got furious. She is furious with the other kids because they are talking about it at school. I asked if they were sad and she got very angry and said no. "They cannot be because they are talking about it." I had to explain that everyone grieves differently and some people find it helpful to talk about it. She does not like that and is fiercely protective of anyone talking about Mattie (I guess I have learned that she likes to bury her head in the sand with emotional problems). Well, at this point, she started to cry and say how much she missed Mattie. Elizabeth has cried before (believe me), but this cry was completely different. This was a cry that rocked her soul. When my mom died, Elizabeth cried, but she was crying because I was sad. These tears were being shed because she was sad. She told me how funny Mattie was, and how she remembered going to see him at the hospital and how he looked just fine then. We talked about Kindergarten, and how she wants me to find pictures of Mattie so she can keep them. She then fell asleep in my arms crying. Then, this weekend, on Saturday she and I went shopping. She insisted we wear our Mattie Walkathon t-shirts, which we did. She asked me to take really good care of my t-shirt because when she out grows hers, she wants mine. She says that she "will always treasure the shirt and her time with Mattie." Finally, we went to church yesterday. Thirteen months ago when we went, Elizabeth told the congregation about Mattie's illness. Yesterday, we needed to update the church. I asked her if she wanted to do it. She said no. So I stood up and spoke. I had rehearsed my speech a thousand times so I could get through it without crying to the point where I could not speak. I did okay, but when I started to falter, Elizabeth grabbed my hand and gave me a huge smile . . . well that made it worse, and I started to cry :) Just as an FYI, here is what I said: "We thank you for your prayers over the past 13 months for Mattie Brown, a 7 year old classmate of Elizabeth's who has been battling cancer. With a heavy heart, we must tell you that Mattie lost his battle this week. We now ask for your prayers for his family, and for his young friends who are dealing with a very difficult life lesson so early in their lives." Vicki, you and Peter are constantly in our thoughts and prayers. Stay as strong as you can and know that there is a Team walking with you ready to help with anything at all that you need."


The third e-mail is from a fellow SSSAS mom and dear friend. Junko wrote, "I read the obituary that you have written for Mattie yesterday.Tad and my mother also read and were heartbroken to see Mattie in there, yet we were also very touched how beautiful it was written. It must have been beyond difficult to do this (along with so many things you have had to do for the last 13 months) and we are truly in awe of your amazing ability to be able to do things so well for Mattie, no matter what they are.My mother cries a lot - she tells me when she picks Kazu up from school, she unconsciously looks for Mattie coming out of school, and realizes that he won't. I also caught myself doing that this morning when I saw the VW car in front of me, and in a split second, I looked for your face in the driver's seat. I am very sad but also angry at the same time why this had to happen to one of the nicest and dearest people I know, and to all of us. I really worry about you and think hard how I can help you and Pete. If you can think of anything, please let me know. I will do it!! I just wanted you to know that. I love you."





The fourth message is from a fellow SSSAS parent and dear friend. Tad wrote, "We all read the obituary yesterday. You are such a wonderful mother, Pete a wonderful father. I have written several over my recent past, and I know the mind cries out against the writing of these things for any family member. Much more evident, however, in looking at that page in the hard copy of the Post, how unjust, unfair, unacceptable the beautiful smiling face of Mattie is juxtaposed among those who have been with their families and loved ones much longer (though understandably also loved and missed). Vicki, I know how it is easier to find solace with those who are also facing hardships, who are very ill, or who have experienced losses. My mind brings me right to someone I knew in school, who was very healthy and had not faced such losses. His response when I told him my father had succumbed to an aneurysm was essentially "sorry to hear that; what are you going to do?" I know now that was more a response arising from a lack of relevant experience (and sensitivity that comes with such experience), than a lack of caring. However, that kind of lack of experience is everywhere, and still stings, or leaves me cold. It is not the kind of experience that we wish on anyone, but it does bring with it more care and concern, more living in the moment, which seem all too lacking everywhere you look or listen nowadays. We are all here, thinking of you always."


The final message is from one of Mattie's outstanding HEM/ONC nurses. Katie was one of the nurses who helped clean Mattie up the day he died. She is an amazing nurse and someone I will greatly miss seeing every day. Katie wrote, "Vicki and Peter,Where to even begin?... First, let me express to you just how sad I am over the loss of Mattie. I hope you all really understand just how great an impact Mattie, and the two of you had on me over the past year. I have been stretched and challenged to the core regarding my nursing practice, professional and personal relationships and spirituality because of your little boy and the advocacy you had regarding his treatment and care. Because of the relationship I formed with Mattie and the two of you, I really questioned what I am doing in this profession and came to the conclusion that there's nothing else I could be doing than pediatric heme/onc and it is the profession to which I have been called. Please know that you, and your precious son helped solidify this knowledge for me.Also, please allow me to thank you particularly for allowing me to be a part of Mattie's final moments and especially for giving me the honor of helping to prepare Mattie, along with Trish and Debbie, after his passing. As strange as it may sound, I can only describe it as a holy experience. Not one I want to do again any time soon, mind you,but one that I felt blessed to be a part of. Mattie was a boy I fell in love with as soon as I met him, (and of course, once he noticed my new red shoes) and I felt blessed to spend every moment with him,especially those final, precious, holy ones. Please know just how much you are loved. I hope to keep in touch with both of you. I leave you with the verse that has continued to be on my heart, Philippians 1:3; "I thank my God every time I remember you."


I end tonight's posting with a beautiful poem written by my friend Charlie.

Warrior by Charlie Brown

How do you picture a warrior?
A soldier, a marine?
A man of Sparta, with spear and shield?

I see a little boy of six
Fighting desperately to overcome
A vicious, unyielding enemy

Mattie, you had help from the best
A mom and dad who would give
Anything to see you well

You fought until it was clear
That this enemy was not to be denied
And then you fought some more

You have a spirit that will transcend
The limits of your body
And mark forever those who knew you.

Rest pain free now and know
That your story is engraved
In the hearts of those who loved you.

Sunday, September 13, 2009

Sunday, September 13, 2009

This photo of Mattie was taken on a beach in Florida. You can see that Mattie was in the process of creating an alligator in the sand. The tail of the gator is behind Mattie, and the gator's eyes are huge and are directly in front of him.

Poem of the day (Thank you Julia!): 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 her and begged her to stay,
but she slipped away like the ocean at low tide,
receding into the blue distance till she 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…

It is 1:30am, and Peter and I are still up and WIDE awake. What explains this? Who knows, maybe it is grief, living in a PICU for 11 months, or the intense stress of having a child diagnosed with a rare form of cancer and then a year later having to watch him die. All of these things together are a volatile combination! One of my mentors from GW sent me an e-mail tonight, and he asked me how do I go from the intensity of caring for someone 24 hours a day, seven days a week, to nothing? Great question, I have no answer, and may not have one for some time! All I know is that for Peter and I our world is askew and nothing seems right, feels right, or is right.

I have found for me the only saving grace I have right now in my life is the thought that I am being somewhat helpful to Ann. Peter and I both spent time with Ann's parents today and helped them with dinner, I did Mary's (Ann's mom) nails, and provided them with some companionship to help break up their long days in their assisting living facility. Each time Mary sees me, she comments on the necklace I am wearing. She can't believe that Mattie actually made it with his own hands. In fact, yesterday I took the necklace off from around my neck so she could feel the beads and examine Mattie's bead selection choices more closely. I was touched that Mary was so interested in his creation, because I figured it only meant something to just me. When you lose your child, your world in a way flips upside down. You lose sight of who you are, what your priorities are, and it becomes easier and easier to slip into further isolation. Going to help Mary and Sully (Ann's dad) pulls me temporarily out of my funk and enables me to focus on helping someone else, and in the process of helping them, they are ultimately helping me. They are giving me a purpose, direction, and in a way they are telling me they trust me to do the right thing for them when Ann is not there (because Ann is caring for her three children).

As I was driving home tonight, I reflected on several things that I have learned about myself. The first of which is after experiencing Mattie's devastating illness, I have concluded that I am no longer fearful of getting profoundly sick or even dying. I have seen how my precious seven year old died before my eyes, and maybe because of the compassion of the nurses around him, I have come to peace with the process of death. It demystified it for me. However, the second revelation is a little more daunting. I have come to the conclusion that I feel most understood and comfortable in the world of the sick and the dying. These are concepts I live and breathe, and to some extent feel as if I no longer feel understood in the healthy and well world.

We would like to thank Charlie for a wonderful lunch and the Petersen family for a wonderful home cooked meal. We so appreciate this incredible level of support. Thank you Karen for the wonderful pie and apples from the farm.

As many of you know Mattie's obituary was published in the The Washington Post today. I included a link below in case you did not read it this morning. Here is what my mom had to say about the obituary. My mom wrote, "We read the Obit and neither one of us had dry eyes afterwards. It was beautifully written and could only have been crafted by a loving and devoted mother like you. Looking at the picture of Mattie with his captivating smile and gorgeous face, we confronted the inevitable question that haunts our thoughts through each of these sad and troubling days and that is why the promise of life so evident in that photo was destined to be snuffed out like a candle whose wick had betrayed it so that it could no longer sustain its precious light. That picture was taken in May 2008 on Grandparents' Day at SSSAS and we remember vividly how excited Mattie was to share his Kindergarten experiences with us and how he proudly introduced us to the faculty and staff that made his time there so incredibly happy. Little did we know then that his life would be cut short and that he would not live long enough to ever attend SSSAS again.. As we gaze on that beautiful face full of life and promise, we realize how much that is precious in life is taken for granted until it is taken from us."

Mattie's Obituary in The Washington Post

http://www.legacy.com/washingtonpost/DeathNotices.asp?Page=SEARCHRESULTS

Saturday, September 12, 2009

Saturday, September 12, 2009

Mattie at age 5, feeding parquets at Butterfly World in Florida. I love his facial expression of fascination!

Poem of the day (Thank you Dr. Shad!): When you feel Lonely


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


Sleeping continues to be a challenge for Peter and I. Our bodies are still programmed to stay up late and not sleep through the night. In fact, I can't fall asleep without taking Tylenol PM. Without it, I am just UP! I am up and yet there is NO little person to take care of. I miss tucking Mattie into bed, reading stories, hearing him sing, hearing him boss me around, and of course watching him build and create.

I spent the morning going through funeral readings and music selections, while Peter was picking up Chris, his brother at the airport. Peter and Chris hung out today, ran chores, watched movies, and even visited Frank, the owner of the Magic Gourd, our local Chinese Restaurant. I am happy Peter had this time to get out of the house and had a good diversion from our daily level of sadness. In the afternoon, I decided to get my hair cut, something I haven't done in a while. Each time I see my hairdresser she comments on my level of stress, based on the texture of my hair. Amazing how even hair, can take on a life of its own during times of stress. I told my hairdresser about Mattie, and she was upset, but of course was unsure how to react or what to say! After all, what can you say that will make a person feel better who has lost their child to cancer? Normally I am very chatty through my haircut, but today wasn't one of those days. Today, I just sat there with my eyes closed. During this time, I could over hear conversations people were having around me. These were conversations I really couldn't relate to anymore, and in a way, Peter and I have been so isolated over the last 13 months that in a way, it feels as if we have been living on a different planet. Our planet however is not hospitable, and I really wouldn't welcome you to experience it. It is an environment that changes you physically, mentally, and emotionally for a lifetime.

Later this afternoon, I had the opportunity to run some errands for Ann. Ann's dad continues to progressively decline, and as I told her it provides me great happiness to be able to help her. I can't say that much of anything brings me happiness these days, but getting out of the house, and feeling like I am helping someone special to me, is very therapeutic. Helping Ann with her dad makes me feel like I have a sense of purpose and provides me with a diversion from my typical state of deep and profound sadness. While visiting Ann's parents, Ann's mom and I had a nice chat. Mary is deeply sorry about Mattie's death. We commiserated over the loss of our sons for quite some time, and then toward the end of the evening she was worried that I had to drive home in the dark. She said she worried about me because I was a very special friend of hers. Despite Mary being worried about her husband, I find that her genuine love and concern she has about Mattie and myself is deeply touching.

While I was out today, I had the opportunity to watch several parents with their children. I guess my perspective on child rearing has changed. I heard one mom yelling at her child. She lost her patience with her daughter, and at one point after yelling started to walk several feet in front of her child. The little girl couldn't have been more than 8 or 9 years old. I am not judging the mother at all, because our children do try our patience, but I guess all I could think of is that she was lucky enough to have her daughter alive and well. That if she thought for a split second that her daughter may die tomorrow, I have a feeling, this would greatly alter the behaviors and actions she performed before my eyes. Experiencing the death of a child opens up your eyes to a new world. A world in which the little things no longer matter, and problems that are really fixable, are really NOT problems at all.

It is funny, at one point today, Ann and I were talking on the phone and lemonade was literally being spilled all over her car. I am sure Ann thought I was nuts, but I started to laugh as she was describing this. When she asked me why, I said that spilled lemonade, though not pleasant, is a good problem to have. It means that she has her children with her and they are healthy. Something I wish I could say, THAT MATTIE WERE ALIVE AND HEALTHY, and at times I still have trouble believing Mattie is dead. As I told Ann, I am happy to serve as anyone's reality check!

We would like to thank the Coker family for the beautiful gerber daisies (one of my favorite flowers, because they are SO happy looking), and for the wonderful and generous dinner. Thank you Carolyn for your friendship and continued support.

I would like to end tonight's posting with five messages. The first message is from my friend, Charlie. Some of you have asked me how I know Charlie. Charlie is a former student of mine and I am touched that she has journeyed this year with me, and is committed to helping me through her writing. Charlie wrote, "Mattie died as he lived, with determination and the heart of a warrior. I cannot begin to tell you how many emails I received from the Transporters, the Lafayette Alumni, some of the GWU cohort students all expressing their sorrow at Mattie's passing. Truly he touched so many hearts around the world. He will always be remembered in people's hearts and thoughts. I won't tell you not to feel guilty about what you can do now that Mattie is gone. This is part of the grief process. You are Mattie's mom (nothing will ever change that) and his advocate to the very end; there is no one who has raised a child who could have done more than you and Peter did for Mattie. What you did in letting him go was an act of courage and love that some people refuse to do. It is so telling that Mattie fought not to leave you right to the end; he loved you both so much that he was willing to bear an amazing amount of pain to remain with you. Only a child who is secure in love would want to do that. I will be here with you to help in any way I can, just as many others are. Just reach out your hand or your words and help will be there. We can't take away your pain but we can walk through it with you. Many thanks to those who helped in Mattie's final night; angels come in all sizes and disguises."




The second message is from my colleague and friend, Nancy. Nancy wrote, "Today was such a profound day of grieving, second only to your terrible day on Tuesday. I am so moved by your words, Vicki, and your amazing ability to bring so many of us close to you and span the miles between us. I never got to meet Mattie and yet he is a gentle reminder of how precious life is to me. I understand how you can question all these months and have been in awe of how you handled this very difficult, demanding, and challenging 13 months. Each day I learn a bit more about the ways in which Peter and you loved and protected your son. In spite of all the pain and uncertainty, you advocated for him in the best way possible, no matter how intrusive the procedure or the hospital staff.Your last few entries are the beginning of another phase of love and protection for dear Mattie. I am so glad that you have included pictures that show him at other stages and times of his life. It only increases my appreciation for his specialness. I know that you will miss Mom and Dad during these next few weeks and am glad that they were here for all these weeks and especially to protect both of you during this darkest hour.The poems that have been included the last two days are so beautiful. As with our Kaddish ( the mourner's prayer) they focus on life. They mention death but it is the essence of existence and the ability to realize that our loved one's are never very far from us. We may not be able to hold them, but we can remember them, we can talk to them, we can write to them, we can picture them close to us always. Yesterday you asked if someone was watching over Mattie and was he happy. I know that he misses Peter and you as you miss him. What I believe is that he is with your Grandmother and your uncle. They will watch over him until the time when you will all be together once again.I want to end with this poem that I wrote tonight. When I was teaching, I worked with 8 and 9 years old. I wanted them to experience the joy of being able to express themselves and found that an Acrostic poem was a good vehicle. I hope that I have captured Mattie's essence and if there are places that are not right, please excuse me.





Memories of a fighter to the end
Asked many important questions during these last months
Taken too soon from everyone who loved him, knew him
Trusted and loved his Mommy and Daddy
Inspired so many to care more deeply about family and humanity
Enveloped by the angels, his great uncle and grandma, and kept safe for eternity.





I think Mattie would want to know that Peter and you are being taken care of now. He would want you to be okay, to take care of yourselves, because he knows that you will always be a family. Exhaustion is a good thing as we must sleep even when we don't want to. I am so sorry that you have had to experience this deepest loss and will continue to keep you in my prayers and especially in my heart."






The third message is from a friend of my sister-in-law's, Lisa. Though I have never met Lesley we have a lot in common. Lesley wrote, "My eyes are swollen because I can not control the tears for this child I have never met. Your family has made such an impact on my family. Mattie has been so brave and strong and as I read your words allowing him to let go, it is so clear he was taught by the best. You and Peter have been selfless and never forgetting your goal...to protect Mattie. Your family has left a legacy to the PICU, your readers, and every child because you have showed us that everyone one deserves and needs parents that never give up. I do not know if I knew how to be that parent last July but I have listen closely to your words and actions and I thank you both for being such a great teacher. My heart is so heavy with sadness for your entire family. I continue to feel compelled to write to you but you do not need to respond...ever. As the blog has shifted and the rawness of your grief is shared, we continue to weep for your entire family. I do not think I have seen these size tears since I was a child. I am happy that you are giving yourself permission to conclude the blog or continue it as you please. While you have so many readers that care so deeply about you, your privacy and well being needs to be the top priority in whatever you choose. I just shared with my husband that I am no longer innocent and live my life unaware. In many ways, you made many of us "step up." I take great effort in trying to understand another person's perspective. In terms of my work, I no longer find the parent who endlessly advocates for their child to be exhausting. You shared that you are spending time thinking about how to remember Mattie. I clearly never met your beautiful son, but I want you to know he has changed me possibly more than anyone....and I think only for the positive. I think will see Mattie in everyone because of your family's impact. He is living in all of us and we are forever changed because we learned about being gracefully brave and loving through you. My deepest sympathy for your entire family."

The fourth message is from a fellow SSSAS mom who I have had the good fortune of getting to know this year. Kathryn wrote, "I am so desperately sorry that the end of Mattie's valiant and truly inspirational battle is coming to an end. You have been everything to him and have done everything humanly possible to help him throughout his fight to a dignified death. He is an amazing presence and light and has changed all of us forever, even those who met him only through your blog. He will always live in your heart, soul and the very marrow of your bones. Yours is a bond that death does not have the power to break, even as it ends the wonderful contact of daily life. Mattie is a glorious shining star and we will join you in doing everything possible to keep his star glowing and fight for others on his behalf against this horrific disease. The idea that vital, lively, gifted, glorious Mattie is being taken from you is more than anyone can or should have to bear and yet you are while focusing on his comfort. You and Mattie have made a powerful impact on the lives of all those who have come in contact with Mattie and you from the wonderful doctors and staff at Georgetown PICU to your RCC and SSSAS families to your work associates and all who have read your blog. As i said before we are not the same people we were before meeting you. It is a change similar to the one cancer wrought in my own life. The priorities that really matter become center stage- compassion for others and enjoyment of life's small blessings like warmth of the sun on our faces. I believe I told you earlier that I call them "Mattie moments" in honor of your wonderful son. I offer my continued support, prayers and anything else you might need in this time of tortuous loss. We love and grieve for and with you."

The final message is from a fellow RCC mom and friend. Grace wrote, "Words simply can't express how sad we are right now. It's difficult to understand why God saddled you and Peter with such a difficult and devastating journey. Perhaps it's because you are so strong. I think history will indicate no other parents who fought so completely, so valiantly for the life of their child. And it's this strength that will carry you through the difficult road ahead--that and team Mattie, and all who care for you. Your focus will be different, but your tenacity will be the same, and great things will come as a result of it. You've mentioned doubts in having a meaning and purpose in life after Mattie moves on. Please know that you will. You will go on with great purpose--it may not be clear now, but I promise, it will become clear, and we will help you find it. We're not going anywhere. You have helped us find meaning in life, now it's our turn to help you. And know that you will always be a mother. I'll never forget when John said to me one day, "Mommy, I love you, but I like Vicki the best." You have been a mother to us all. I can speak first hand from being on the receiving end of your kind, caring gestures, gestures only a true, caring mom is capable of. "