The Mattie Miracle Cancer Foundation celebrates its second anniversary!
We are a 501(c)(3) non-profit and tax exempt charitable organization dedicated to finding better treatments and a cure to Osteosarcoma and Childhood Cancers. We help build the awareness of osteosarcoma and childhood cancers, and educate the public and medical professionals about the realities of childhood cancers. We advocate for the psychosocial needs of the children and their families who are fighting this terrible disease. Please visit the website at: http://www.mattiemiracle.com/ and take some time to explore the site.
We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:
.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!
November 7, 2009
Tonight's picture features Mattie and his famous left leg, George (whose name was coined by Dr. Bob, Mattie's surgeon). Mattie was using George to play on the computer, because his other three limbs were out of commission from limb salvaging surgery. In all reality, Mattie was amazing, because despite intense pain, his true spirit and character always shone through.
Poem of the day: WHEN GOD CALLS By Cindy O'Connor
When God calls little children to dwell with him above,We mortals sometimes question.
For no heartache compares with the death of one small child.
Who does so much to make our world, seem wonderful and mild.
Perhaps God tires of calling the aged to his fold, So he picks a rosebud before it can grow old.
God knows how much we need them, and so he takes but a few, To make the Land of Heaven more beautiful to view.
Believing this is difficult still somehow we must try.
The saddest word mankind knows will always be"Goodbye."
So when a little child departs, we who are left behind must realize God loves children,
Angels are hard to find.
Today was simply a hard and depressing day. I woke up not feeling well physically, and the physical drain only compounded my emotional state. Perhaps it was the reality that Peter and I were headed home today from Ann's house, I don't know. However, I do know that it is hard to be in our home. Every where I turn I see Mattie's things, his toys, his clothes, his art, and I feel his presence. For me, my home is no longer a safe haven, but it is a reminder of the pain and anguish we have and continue to suffer.
When I returned home today, I unpacked things, and then tried to get myself prepared for a remembrance memorial being held at Georgetown University Hospital on Sunday. The Hospital has invited families who lost a child at the Hospital to this event. We have been asked to bring a framed photo of Mattie and also say a few words. Saying a few words is not an easy task for me. Why? For two reasons. The first is that despite writing on the blog each night, the spoken word as it relates to my memories of Mattie does not come easily to me. Second of which is talking about Mattie in these public forums is not healing for me. What I find is that I land up jumping into my educator mode. Which as the Foundation unfolds, will most likely be a strength that I can hopefully pull from. But I guess what I find fascinating about my statement is that I have believed as a graduate student and a licensed professional counselor that talking for the most part is healing. However, I think I could talk about Mattie until I was blue in the face, and I frankly wouldn't feel any better. There are just some pains that no amount of talking can ever repair and I suppose this is a powerful lesson I am learning.
I framed two lovely pictures of Mattie, but now can't decide which one to bring with me to the Hospital tomorrow. Most likely I will select that wonderful picture of Mattie at Butler's Orchard, where he is holding a large pumpkin he picked off of a pumpkin vine! Peter and I jointly wrote what we are saying tomorrow, so I feel a sense of relief that this was accomplished before midnight! Thanks Karen for coaching me not to reinvent the wheel. I have written so much about Mattie this year, and turning to previous things I have written helped me create what I am saying tomorrow.
Today I received a "friend survey" from Ann. She sent it to several of her friends, and I decided to fill it out. One of the questions on the survey was what date on the calendar are you looking forward to. I gave this question great thought, and to my dismay the response I kept coming up with was NOTHING! There is no date that I am now looking forward to in my life. It was hard to admit that, type it, and to even report that tonight. When you have a child in your life, there are MANY, MANY important dates. But somehow without Mattie, these dates, holidays, events seem a little less joyous, a little less meaningful, and a lot less important. I suppose the fact that I can verbalize this and accept this as a true feeling of mine is a healthy thing.
I received a lovely e-mail today from Charlie. As my faithful blog readers know, Charlie submits a posting each day to me. Many of you know that Charlie was a former student of mine. Charlie and I had respect for each other right from the beginning of our educator-student relationship, and over the years, this relationship turned into a friendship. Charlie's e-mail truly touched me today, because it showed what an impact Mattie's life has had on her, and she never met him. Charlie is a professional school counselor, but because of Mattie's illness and death, she decided this year to obtain additional training to be a volunteer grief counselor. Any case, she shared with me one of her final class activities she had to do, and I found the whole message very touching and would like to share it with you tonight.
Charlie wrote, "I normally reflect on the blog but I am going to deviate a bit on this because I did my last day of training at Haven (an organization that supports people in grief) and I wanted to share with you what transpired on Friday. We've been watching and discussing films and learning about the ways people grieve. We have had presentations on losing a spouse, a child, or other close friends/family and on suicides as well as unexpected and/or traumatic death. But Friday was different, we were learning about "manning" the phones and being the first point of contact and that sort of thing. And then one of the staff members came in to help us do a ritual to complete our training. She did a personal ritual with a candle and then invited us to do a ritual by building a "memory chain" of someone who died. I sat and thought and I kept coming back to Mattie in spite of all the other losses I've faced so I went with the feeling. We were asked to pick a threading cord (different colors and materials), then from a variety of beads/objects and make knots to separate them. I had no idea what I was going to do but I felt guided once I started. We were to write down what they meant on a card and then share it. So here goes. A red cord that while thin is very strong -red for Mattie's favorite color and the strength for his connections to family and friends and his drive to live, A letter bead of "M" for Mattie, miracle, magic and marvelous, all the things that describe him for me, A baseball for the Boston Red Socks, his favorite team and symbol of the father son bond, A cat for Mattie's love of animals and for Patches in particular (also JJ)A ladybug stands for Mattie's love of all creepy, crawly things (no roaches available), but also that ladybugs are helpful, they are found in our gardens and they symbolize spring and renewal, A fish for the fish tank at Georgetown that Mattie loved as well as his last pet who went on to heaven with him, And finally a bell, for magic, for music, for Mattie's wind chime that rings with no breeze, and from the movie, A Wonderful Life (every time you hear a bell, an angel gets his wings)-for the sound of Mattie graduating to his wings.I have not yet decided whether to keep this in my purse or put it in my car, but either way, I will see it daily and think of Mattie. Be at peace for a moment knowing just how much he meant to so many of us."
November 6, 2009
Tonight's picture features Mattie in the Lombardi Clinic. Notice what he is holding... a picture of what else? Yes a roach! Jenny and Jessie (his art therapists) printed the picture of this roach from the Internet for Mattie, and from this picture he designed a roach out of model magic. The model magic roach actually looks life like. Mattie would display the roach in his PICU room during most admissions. However, at one point we lost the model magic roach while moving out of Mattie's room. We were both upset by this, but then realized during another admission that someone in the next unit found the roach and loved it, and put it on display in that unit. When we learned about our displaced roach, we reclaimed it!
Poem of the day: To My Mother by Dawn Mitchell
I see you each time you shed a tear,
I catch it and kiss you,
I hope that you know that I'm near.
This place is so beautiful,
There's so much to see!
I know that someday you'll be here with me.
The angels were singing when I arrived!
Jesus was there with His arms open wide!
The snow and the rain are just my confetti.
I know you'll be coming and I want to be ready.
When you feel the wind, it's me walking by.
I can run and skip now, I can even fly!
When the blossoms and leaves fall into your hair,
It's me planting kisses, yes,
I put them there!
The birds are singing to keep you company,
They're especially for you with love from me.
I know that you miss me and feel so alone,
Until the great day when you finally come home
Please remember as the seasons change from one to another,
I'll always love you.
You're my friend and my mother.
I received this e-mail today from Sammie's mom, Chris. As many of you know, Sammie lost the battle to Osteosarcoma in October 2009. Chris and I have had the opportunity to e-mail back and forth throughout this year, and I find as we are grieving over the loss of our precious children, I find her support and insights very reassuring. Chris wrote, "I am too tired to write and I am sure you are too tired to read anything too long.. I just need you to know that I TOTALLY get the pain of watching your child die when they really did not want to. There was nothing easy about Sammie and Mattie's passing and I feel like we witnessed similar things as they fought to stay with us. I can not erase the look on her face from my mind. I will never say to you that I know how you feel because even though we both lost our children to this very cruel monster called Osteosarcoma the grief is very personal and I can only say that many days we travel the same lonely road. I do not know how we get up every day but I will tell you the mornings are awful and hard and then nightfall comes and I unravel all over again. I send you my love and my respect."
Though Chris and I live on completely opposite coasts, we are both experiencing similar feelings and reactions to the traumatic loss of our children. I find it reassuring to hear that I am not the only one who feels disengaged from the world, unable to focus on anything, no desire or energy at times to interact with others, and the list goes on. I find that the world of cancer is a small place, and Peter and I united with many people this year who experienced cancer personally or in their family. However, we are now part of an even smaller and tighter family, the family of those who have lost a child to cancer. In a way, in this family no words are needed, we just get each other right away. We get the emotional pain, we get the memories of our children living through torturous treatments, and most of all on some level we get the loneliness, isolation, hopelessness, and at times despair that can fill our current days.
I had the opportunity today to have lunch with Ellen, Charlotte's mom. Ellen and her family have done so much for us this year. Her support never wavered, and for that and her friendship we are very grateful. Ellen shared a current story with me. She said that Charlotte told her art teacher this week that Mattie loved butter. They were talking about butter balls in class, and Charlotte couldn't help but relate the class lesson to her friend, Mattie. I found this very touching, and every time I hear one of Mattie's friends recall a funny story or memory about Mattie, it makes me smile. I enjoyed the opportunity to talk with Ellen, and as I told her, she does not need to experience what I went through to be able to support me appropriately. I just value a friendly and understanding heart and mind, and all I can say is thank goodness the majority of the world doesn't feel the same kind of pain Peter and I do. If it did, we would have a society unable to function.
I had the opportunity to take Ann's children out for ice cream today. Ann's youngest daughter, Abigail, and myself are both chocolate lovers. While we were sitting and eating ice cream, all of Ann's children and I reflected on our ice cream choices, and we discussed what Mattie would of had if he were with us. Abigail and I both agreed that Mattie would have disliked our choices intensely. Tonight, Ann and Bob are flying home, and soon our child care responsibilities will be coming to an end. Naturally I would imagine you probably can understand our mixed emotions about this. Though raising children is definitely challenging, time consuming, and on some days sucks the energy out of you, in the end, there is nothing more satisfying to know than you have influenced a life. I am also getting the opportunity to get to know Ann's oldest daughter, Katie. Katie will be turning 12 years old in less than two weeks, and through her I am learning about the complexities of the teenage years. I certainly am aware of these issues from a developmental and counseling perspectives, but actually living a day in the life of a pre-teen has been very enlightening. It is a fine balance between setting limits and yet trying to connect with her on an emotional level. Far more complicated for a parent than some of the issues faced in the elementary school years. Needless to say, these few days of watching Ann's children has been good for me, because I thrive on the desire to care for others and to be needed. Without Mattie, at times I feel like I am floundering, or as I told Ellen today, wasting my time and my life. Naturally on a cerebral level I know this isn't true, but there are times this is simply how I feel.
I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "Since I can't see children anywhere near Mattie's age without thinking about him, I can just imagine the tip of the emotions that are stirred for you. I applaud your courage in facing the campus and I have no doubt that the feelings are so strong as to cause physical illness but I hope that will subside with time.Reading about Abigail and Katharina made me smile; while children are sensitive they also seem to cope so much better than we adults do. Tricia's email was "spot on" about how it seems some people don't appreciate what they have or understand what is truly important (family) until they don't have it.I know my life has been profoundly changed by walking this path with you; I continue to pray for you and Peter each day. May all the good you do for others build a place of peace in your heart."
The second message is from Mattie's oncologist Dr. Kristen Snyder. Kristen's message was very symbolic to me, because in a way, Mattie was communicating to us through her flower bulbs that began to bloom. Almost as if Mattie had a rebirth. I do realize that this may be my attempt to feel that Mattie is okay. Kristen wrote, "Today, as I left my house, I glanced over at my landscaping to my left. Several weeks ago, on Sunday, October 11, I spent the afternoon planting hyacinth and tulip bulbs. The first frost had fallen and so I assumed it was safe to do so. Today, as I scanned the yard...much to my dismay...there are bulbs coming up!!!! Yikes! I immediately thought of Mattie...for two reasons. One, this is certainly something he would be interested in. And two, this is certainly something that could be of his doing! As Tricia so eloquently put "you are always on my mind." It is amazing the connection you have created with so many...the intricate web that Mattie helped to weave. And like a true spider's web it is as strong as steel. As the days and weeks stretch into months know you can count on the support and strength of this web of friends and community."
The third message is from my friend and colleague, Sara. Sara wrote, "I just wanted to write a quick email to say congratulations on launching the Mattie Miracle Cancer Foundation. It is so amazing how quickly you made this a reality. It feels a little odd to say congratulations or to have a celebratory tone because the foundation is the result of a terrible tragedy, but I think the two of you deserve to be congratulated for the inhuman efforts you have made--first to help Mattie battle his cancer and live the most authentic life he could while going through that ordeal, and then for setting out to help other families and raise money for research. Mattie would be so very proud of you. I also want to acknowledge the two month anniversary of Mattie's death. I agree that it is hard to fathom that 2 months have passed. How did that happen? Really, how did any of this happen? It is still a strange, strange, strange reality. I'll never forget the day Mattie died. It was a very strange juxtaposition for me. It was the first day of the 2009-2010 school year. I got to school super early, preparing to welcome all of my freshman and conduct a freshman orientation. As you can imagine, this takes a lot of energy--hyping yourself up, yet trying to help contain the anxiety of the nervous students. Well, I honestly just didn't feel like doing it. I knew you all were in the hospital and that Mattie wasn't doing well. I just had a sick feeling to myself and I really didn't want to participate in the activities. Of course, I did it, but it honestly was the first time in my 8 years as a school counselor that I did it half-heartedly. I was just walking through the paces. And sure enough, by the time I got back to my office I had an email from Charlie telling me that Mattie had passed. Every cell in my body told me to leave the office and go to you. I just wanted to leave. Something much more important was happening and transpiring and I wanted to be with you (even though that really wasn't my place). That evening I had to teach class, and WOW, was that a challenge. The next evening I had class. I just wanted the professor to cancel class and for all of us to sit around and talk about Mattie. That was the only thing that seemed fitting. I miss him, too. And I didn't even know him well at all. But he was special, and it was so easy to see his specialness. It just emanated from him. I am so glad to read that Ann is wearing the pin Mattie gave her. That is so sweet and special. I hope Ann's children know how lucky they are to have you watching over them. They are also special children and I hope being around them helps lessen your pain a bit."
November 5, 2009
Tonight's picture features Mattie with Linda (Mattie's childlife specialist at Georgetown). Clearly you can see Mattie is all bandaged up from his second major limb salvaging surgery. To keep him stimulated, Jenny and Jessie (Mattie's art therapists) contacted Mattie's occupational therapist, Kathie for some ideas of what activities would be helpful and interesting for Mattie to do while quarantined in his bed. Kathie suggested that Jenny and Jessie make a fishing pole and a pretend pond with magnetic fish. You can see the pond is comprised of packing pop-its and Mattie is using his right arm to try to fish. I still have this fishing set in my living room (NATURALLY!), mainly because this set was a God sent and brought a smile to Mattie's face even under the most trying and painful times. I want you to also note Linda's smiling face. It is true that Linda is an upbeat, down to earth, energetic, and positive individual, nonetheless, Mattie (from my perspective) had a way of getting her to smile or almost beam. I always enjoyed watching their special dynamic together.Poem of the day: Precious Loan
God blesses us each with so many things
And sometimes that blessing is a child.
He chooses a special angel, picked just for you
And loans them to you for awhile.
From the time they arrive
They hold your heart in their hands
And add countless precious moments to your life
And each night we bow down and ask the good Lord above
To protect them and keep them from strife.
For this oh so precious gift, God doesn't ask a large fee.
“Just love and care for them, and teach them of Me.”
So we do what we can, We work hard and we pray
And watch them blossom and grow
With each passing day.
Not one of us knows how long they'll be here
Or when God will call for his loan,
And take that special angel, picked just for you
Back to his glorious home.
But he made us a promise and I have no doubt,
He will carry you through this great sorrow.
Because when it's your time, he'll be first to greet you
And you'll be blessed with an eternity of tomorrows.
I want to begin tonight's posting with a message that was posted on Sammie's website today. As most of my loyal bloggers know, Sammie died in October of 2009 from Osteosarcoma. Sammie's mom, Chris, had been dealing with Sammie's pending death for months, and I would read Sammie's website in awe of Sammie and Chris' strength and courage. Not ever knowing that I would be facing Mattie's death at the same time. Chris posted the following message today about a little boy named Noah. I have no doubt receiving a card would brighten this boy's day as he celebrates his last Christmas a month early. Thank you for considering to send a card or learning more about Noah.
A little boy from South Lyon named Noah is in the last stages of a 2 1/2 year battle with Neuroblastoma cancer. His family is celebrating Christmas this week and Noah's request is to get lots of Christmas cards. Please send a card to him at:
1141 Fountain View Circle
South Lyon, MI 48178
This link is news coverage of Noah and his final request: http://www.clickondetroit.com/video/21525126/index.html
This afternoon, I had the opportunity to pick up Ann's children near Mattie's lower school campus. I guess this is like desensitization in a way. I am very uncertain about returning to Mattie's campus. So I am taking it in stages. I have visualized it, driven close by to the campus, and today I parked about two blocks away. As I was waiting for the children to arrive to my car, I could feel all sorts of emotions from within. It was almost like I was going to be physically sick to my stomach. As I saw moms in their cars passing me, the only thing that I could think of is the major difference between themselves and me. On Sunday, Peter and I will be attending a memorial service at Georgetown Hospital for all the children who died at the hospital. At the event, we are asked to bring a picture of Mattie and we can also say a few words. So while sitting in the car today, I couldn't help but reflect on the fact that here I am headed to my son's second memorial service while other moms are zipping passed me focused on typical (and healthy) mom like issues and worries. When you do such a comparison, it is a real wake up call. It also verifies for me just how profoundly different my world is from those around me.
I had the opportunity to drive home with Ann's youngest daughter, Abigail, and Katharina (Tanja's daughter). In the back seat, where the children were, is a box filled with Mattie car toys. They both had no hesitation to open the box and explore it. Which is fascinating in and of itself, because I think most adults would have paused or maybe not even opened the box for various reasons. But the children had no fears or hang ups about seeing what Mattie enjoyed to play with in the car. In true Mattie fashion the box was filled with what else? Plastic bugs and fake spiders. So Abigail and Katharina had a ball freaking me out while I was driving. Don't be concerned about this, because I became a pro of a driver thanks to Mattie. He would always try to trick me or scare me with something creepy while I was driving. So in essence today it was like having two Mattie's sitting in the back seat. In fact, Abigail asked me if Mattie would have approved of the way they were scaring me. She went on to say, "we are Mattie helpers down here on earth." After hearing this terminology, it made me pause, and also appreciate the way Mattie impacted his friends.
Each of Ann's children had a test to study for today, so I can officially say that my mind was stimulated this week. I have learned about things I either forgot about or never learned in grade school to begin with. The one thing I have discovered is caring for Ann's children enables me to forget some aspects of my sadness at times, and then of course, there are times when you can't help but be forced to examine what is missing in your own life.
Mornings and night times are generally the hardest times of the day for me, because this was when I was very busy with Mattie (when he was well). I do miss tucking him in at night, reading with him, and having a moment where we could snuggle next to each other and chat. With Mattie, sitting still wasn't his forte, but at bedtime a different side of Mattie would emerge. His tender side became apparent. There were some nights, when he was well, that I really felt too tired to do his nighttime routine, but somehow I always found inner resources to pull from. I am so happy I always did because I would have hated looking back now with regrets.
I would like to end tonight's blog with two messages. The first message is from my friend, Charlie. Charlie wrote, "When I read the stories about Mattie I find myself wondering what would he have been? An explorer, an archaeologist, an engineer, an artist, an entomologist? Maybe some other career that doesn't even exist yet. What a loss to all of us. So many things make me think of him, bugs (especially), but also articles about dinosaurs, catalogs with science experiments, magic shows,art materials and the list goes on. And of course anytime I pass the Dunkin' Donuts and either see the sign or smell the donuts. It's amazing. I am glad you have the opportunity to interact with Ann's children while she is away and I commend you on your courage for doing so. It sounds like this is a good situation for all of you. Today, have a moment of peace and know that many of us out here are thinking about Mattie and keeping his memory alive and well."
The second message is a note I received from Tricia. Tricia was one of Mattie's favorite HEM/ONC nurses. Some of you may recall that Tricia delivered me hot tea each morning when she was caring for Mattie. I have very fond memories of Tricia. She is an outstanding nurse and advocate, and she helped me in numerous ways during our 13 month stay in the PICU. She is a person I will never ever forget. Tricia writes to me periodically, and her subject line of her e-mail messages is always, "Always on my mind." I simply love that statement!
Subject: "Always on my mind"
Dear Vicki & Peter,
I have been thinking of you regularly, as well as Mattie, who seems to be in my thoughts constantly. Yes, I am constantly re-evaluating my life and preaching to my children to show more love and appreciation to one another. I sometimes cry when I think of how unfair Mattie's untimely death was. My heart aches to think of what it would be like to endure the loss of a child. I am having difficulty on a daily basis, sometimes don't want to be bothered with anyone, or to go to parties or have fun. The emotional impact of Mattie's loss has at times paralyzed me, that is how profoundly I have been affected. It is not the quantity of one's life but the quality and the poem "The Dash" was so powerful, it really says a lot. Of course, I read it to the children and other family members because I sometimes feel as if I am the only one in my family who knows that FAMILY matters. I struggle to get everyone together for celebrations/Holidays and everyone has their own agendas that somehow don't center around the blessing of what it means to still have FAMILY. Anyway, I don't feel very happy these days and can not stop thinking of all of you!!!! I try to put on my happy face and yesterday was my youngest daughter Kelly's Birthday.. the BIG 13TH. I gave her the choice of whether she wanted to stay home to celebrate or go with her older sister, myself and the cousins to a baby shower for my nephew's wife. She opted to go to the shower and we all had a wonderful time together. Later, after we came home we celebrated her birthday. I feel as if through Mattie, I have learned to cherish these times for everything they are worth and I thank all of you for teaching me how important these times really are. This morning I am sitting here drinking a cup of tea and asking myself again, like so many times before, Why Mattie? I read your blog, and I loathe the fact that you have to bear this pain everyday. I am grateful for Ann, her Mom, Tamra and the many others who are providing you with their support and friendship as you attempt to live and endure all of the everyday challenges life now brings your way. I continue to be so proud of your determination and strength to go to Ann's house on Halloween, and for the comfort and friendship you give to Mary, and all of the other hurdles that you encounter each day. All I know, is that life is a process and when someone we deeply love leaves us... we spend the rest of our days until we meet again remembering how they made our lives complete while they were with us, knowing they live within us and that we are forever, much better people for having had them in our lives while they were here. This is the way I feel about Mattie, my sister, and brother and all my other numerous relatives that still today vividly live within my heart and fondly in the massive memories of my mind. I am sorry you haven't felt well with the fatigue and migraines but I know that emotional stress has the ability to cause many physiological symptoms and I will continue to pray that you will regain your physical stamina and mental strength as time goes by. Tell Peter I said hello and he is also on my mind, I am sure going back to work could not have been easy and knowing how he cares for you I am sure he longs for the days when you will be feeling better too. Oh, and congratulations on the progress of the foundation, as usual, Mattie is smiling on you both and knowing that you would never let him down and oh how proud you continue to make him, and all of us, by being the extraordinary parent advocates that you have always been. Take care, you will continue to be in my thoughts and prayers.
Forever in my heart, Tricia
November 4, 2009
Tonight's picture features me wearing silly straw glasses, that Ann gave to Mattie, and I am attempting to use them to drink orange juice. Mattie thought I was an absolute riot, and Ann snapped a picture of this dynamic. Mattie was recovering from his major surgery last November, and I would have done just about anything to keep him happy and engaged. Which leads to the picture you see tonight.
Mattie was born with a grand appetite for adventure that transformed even the most ordinary events into magical moments of discovery that were marked by inquisitiveness about the world of nature around him which he tackled with laser like precision. Right from my earliest recollections, a day out with Mattie was for anyone lucky enough to have the opportunity, a memorable and unforgettable experience. You instantly knew that here was a boy who explored his surroundings with the intensity of a super-sleuth who was on the trail of unraveling a deep perplexing mystery.
In summing up this aspect of his character, I can say that he was a little boy who enjoyed every moment of his childhood which he lived with imagination, humor and passion. Yet deep within his soul were the makings of a profound thinker who thought about the world he lived in and who knew that animals needed to be taken care of and protected so that they would not vanish like the dinosaurs. Our Mattie was committed to being kind to animals and would have made sure that open spaces were protected for everyone to enjoy. In the blog you have no doubt seen pictures of him feeding his pet cat, Patches, who he missed when he was in the hospital because she was his feline pal from the day he was born and held a special place in his heart. You might have caught another picture of him romping through the grassy areas of his housing complex with JJ, the resident Jack Russell terrier who belonged to his neighbor, JP. What rollicking fun Mattie and JJ had together in the good old days! I am particularly fond of this picture because I was there and lucky enough to have taken it! In his last days on earth, Mattie requested a fish of his very own. He had always wanted one as a pet. PopPop and I scrambled at the last moment to satisfy his dying wish. We brought him a beta fish that he loved and named “Super Red” because the fish was a beautiful shade of red, his favorite color. “Super Red” made him so happy in the brief time he had left on earth and was a big distraction for him during his final hours. In many ways, Mattie and “Super Red” were kindred spirits destined to be united in death. My hope is that they made the journey together and that Mattie, with his little pal “Super Red” at his side, is now shaking things up in heaven as he did right here on earth!
November 3, 2009
Tonight's picture features Mattie on November 12, 2008, when he had his second major limb salvaging surgery. During this surgery, Mattie had prostheses placed in his right leg, left arm, and had a bone graft in his left wrist. It was massive and complex surgery, which took about 10 hours to complete (of which I will always be grateful to Dr. Bob, because his surgeries gave Mattie an additional year of life). However, days after this ordeal, Mattie was in bed smiling and attempting to lift his leg. It was an amazing sight to see, and despite being in pain, he was a trooper. Mattie was and will always be my hero. He exemplified courage and strength, almost in a super human kind of way!
Poem of the day: We Only Wanted You
If we could have a lifetime wish
A dream that would come true,
We'd pray to God with all our hearts
For yesterday and You.
A thousand words can't bring you back
We know because we've tried...
Neither will a thousand tears
We know because we've cried...
You left behind our broken hearts
And happy memories too...
But we never wanted memories
We only wanted You.
Mattie died eight weeks ago today. I am not sure how two months have passed before our eyes so quickly, and yet to me, it still seems like yesterday that we were fighting the battle of all battles. The days leading up to Mattie's death were traumatic, but watching and experiencing his death, which lasted a torturous five hours and it felt like an eternity, remains within me until this day. I can still picture the syringes of pain medication lining his bed, there just wasn't enough medication available to take his pain away. Mattie's death, his pain, the "death rattle" sound coming from his lungs were all harrowing experiences, so much so that even his nurses were crying. Crying was the only thing one could do because we felt absolutely and utterly helpless. The day of Mattie's death I cried so intensely, I almost felt as if I were screaming and crying at the same time. I remember holding Mattie as each of his vital signs flat lined, and then continued to hold him over an hour after he died. As I sit tonight and reflect on his death, it is no wonder I can't move on, I can't enjoy life, and I can't see things the same way again. I have seen and confronted death, but not any ordinary death, or in an ordinary or natural way. I saw death take over my son's body in a hostile, aggressive, and inhumane manner. These are the visions I am left to deal with, process, and understand.
I do want our blog readers to know that every Tuesday (in honor of Mattie's death), Mattie's oncologist, Dr. Kristen Snyder writes an e-mail to Peter and I. What a doctor, what a person! I truly believe that to some extent Mattie has forever changed her life as well. I also received many lovely e-mails today from our amazing Georgetown University Hospital support system. It was nice to hear from them, and I suppose until I wrote it last night on the blog, they weren't aware of how much we missed them. I am sure some families may want to block all aspects of the hospital out of their minds. I can certainly appreciate that completely, but for Peter and I, Georgetown was more than a Hospital. It was our second home, where we felt we were united with staff to achieve a common goal, The Mattie Miracle.
We may not have been able to achieve the one true Mattie Miracle, as we had hoped, but I am so pleased to announce that The Mattie Miracle Cancer Foundation did become an official corporation in the State of Virginia on November 2, 2009. I can not thank my Peter and Peter Keefe enough for the tireless efforts they are putting into this Foundation to get it up and operational. I spoke to my Peter last night and I told him I am so proud of the work he is doing to help get this Foundation established, but I also wanted to explain to him my lack of energy toward the creation of the Foundation. In true Peter fashion, I really did not need to explain anything to him. He knows where my heart lies, but also understands that I am fatigued, depressed, and trying to recover from over a year of intense stress which of course only led up to the death of Mattie. Not that my lack of action needed explanation, but I felt better talking about it with Peter.
I spent part of my day today with Ann. We went shopping together and had lunch and chatted. One thing was evident though, and I guess it is quite transparent to Peter and Ann, and that is I am refusing to allow myself to be happy. On some level I feel guilty to experience even brief moments of happiness. Both Peter and Ann have spoken to me about this and it is something that I have made a mental note of, yet, how do you find happiness when everything about your world makes no sense? This may sound strange to you, but I offer you the opportunity to pause, and if you are parent try to imagine that tomorrow you wake up and you no longer have your children around. Not that they never existed, they existed alright, but they were taken from you after a most torturous battle that you lost right before your eyes. I ask you what do your days look like now? Does life as you know it make sense? Chances are if you are really able to visualize what I am proposing, you too would be lost, questioning life, and wondering what the future holds for you.
Later this afternoon, I went with Ann and her children to visit Mary (Ann's mother). While visiting Mary, she choked on a muffin. It was a frightening couple of minutes in which Mary did turn blue and she was very shaken up from the inability to breathe. Part of Mary's disease progression is affecting her ability to swallow. One of Mary's greatest remaining pleasures in life is eating, and if she must land up having a pureed diet, this will greatly impact her quality of life. It was actually very disheartening to see this realization today, and to see Mary so frightened, and questioning whether it would have been better for her to die today when this incident happened. Mary has experienced so many major losses, and as I sat with her, I couldn't help but deeply understand what she was telling me.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "If some people are pushing you toward doing things or seem to be asking you when you will be ready to "reengage" with the world, it is not because they don't care about your loss, I believe it is because they do and they cannot fix it. Mattie is gone from here, nothing will change that and so they want your pain to lessen. Unfortunately, (but fortunately for them) they have not been through a year like yours and cannot really conceive of what that does to the essence of who you are. There is a loss of role as well; you are parents without a child to parent. Now instead of a triangle, your family structure is a line linking you and Peter. Getting from one to the other takes negotiation, time and effort to find a balance, just as it took those things to find a balance when you were first married and then when Mattie joined you. Now you have to go back to the original structure but it is not the same as the memories pull you into the pattern you had for seven years. Your love and need for Mattie will always be with you, and hopefullythose who support you will understand your need to keep him a part of your life as Ann does. Your description of Ann as a bridge is so perfect; she has been that for you all through this between the volunteers and you, the hospital and you, and now between the life with cancer and the life after. I am grateful for her place in your life."
November 2, 2009
Monday, November 2, 2009
Tonight's picture was taken in October 2008. Mattie was sitting in the Childlife playroom at Georgetown University Hospital. In front of him on the table was his ocean creation. He painted the blue backdrop, and then created sea creatures out of model magic. Mattie even pulled Brandon (his big buddy) into this project. Brandon created a shark and other creatures to add to the scene. Mattie played with this ocean set up for days, and with each new day of play, he would add more things to the scene. Mattie's ocean became the topic of conversation within the playroom for that week. It was through these projects that Mattie showed others his natural creativity, his fun for life, his ability to draw others into his play, and most of all, looking back, Mattie was teaching us all something about ourselves. I miss that beautiful face, his creative spirit, and mostly his tender and loyal love.
Poem of the day: Not Like You by Sheri Hess
I am a mother, though not like you.
You cradle your sweet baby in your arms,
Mine are empty, but I hold him in my heart.
You brush her soft curly hair,
and tie pretty pink bows just right.
A lock of his hair is tucked neatly in a book.
You pick daisies and tie them in a chain to wear around her neck.
I cut lilacs and arrange them in a vase to set at his grave.
You look forward to dreams and plans.
I hold on to memories.
I am a mother, though not like you.
Charlie sent me this poem today, and it spoke to me. Mainly because the poem expresses my reality. I may be a mother, or let me rephrase this, I will ALWAYS be Mattie's mother, but what defines me as a mother is no longer. I no longer have a child to care for, someone to help dress, feed, take to school, do school projects with, after school activities, and the list goes on. These are things parents take for granted each day, but I assure you when these perceived difficult, stressful, or perhaps mundane tasks are taken away from you through death, you realize just how much you miss them. How you long for them to be a part of your life, and how each day without them and without Mattie seems more unstructured and at times meaningless.
Peter and I spoke this evening over dinner and he shared with me a revelation he had about our situation. On some level I understood this already, but I guess I hadn't verbalized it. Peter explained that we are dealing with THREE losses in our life. I stopped to think about that because I wasn't following him at first. The first loss, was the loss of our everyday life. Specifically the life we were living back in July of 2008 before Mattie was diagnosed (July 23, 2008). As soon as Mattie was diagnosed our world changed DRAMATICALLY. We no longer left our home for the most part, we lived in isolation because of Mattie's compromised immunity and because of the way his treatment impacted him psychologically, and in this process we retreated or disengaged from the world slowly, but it happened. During Mattie's treatment I stopped reading the papers, stopped watching TV, and in all reality there were many a day that I would joke with Alison (our Team Mattie Fund Coordinator) to please let me know if there was a local or national emergency because I was too far removed from reality to know. I was joking, so it seemed, but I was actually VERY serious. The second loss, and a very profound loss at that, was Mattie's death. This is a loss that I must say I may never get over. It lives deep within me, it pervades my mind and my heart, and at times is all consuming. The third loss pertains to losing a support network that became a crucial part of our daily living for 13+ months, and that is the separation from Georgetown University Hospital. I would say for the most part, people do not become attached to their doctors or nurses who care for them. However, the level of care provided to Mattie and our family was intense care, life and death care. The doctors, nurses, and support personnel at Georgetown became our family. When Mattie died, this social network was pulled from us, and in essence what does this leave us with???? We do not feel a part of our former world (the pre-cancer world), and we no longer are part of our cancer community. So Peter and I feel like we live in limbo, or as I tell Ann, purgatory.
Peter spoke to me tonight about the importance of Ann in our world. Not only does Ann keep me grounded, makes me feel needed, makes me feel as if my life matters, but as Peter so astutely stated, Ann is our main bridge between our former world (our pre-cancer world) and our cancer world (not only was Ann our Team Mattie coordinator, but she checked in with us daily, sat with me through every scan result that we received - results that usually weren't positive, played with Mattie on a consistent basis so that I could take periodic breaks, and most of all dug deep to instill HOPE, when it was very hard to find it for ourselves). She carried us through both worlds, and now she is desperately trying to help us find a way to live in our new reality, a world without Mattie. This is no easy task. There are days that I shut down from Ann as well, and she understands that, but also never gives up. When you experience such a traumatic death, nothing makes sense, and the level of vulnerability I feel is intense. It is hard to reengage back into the world, it is hard to let others in, and most likely I am sure how I deal or don't deal with those in my former life is disconcerting to some of you. It is in these times where you feel you can't understand me, or you feel as if I need help. I encourage you to pause and reflect on what Peter and I have survived in one year. If you truly felt what we went through, then you know that judging me, judging my decisions to protect myself now, only makes perfect sense. It took me 13+ months to learn to live and survive in a PICU, so after this trauma and losing Mattie, I can imagine it may take me that amount of time or longer to feel comfortable again in your reality.
After the depressing day I had on Sunday, I did manage to get up today and leave our home. I went to visit with Ann and Mary (Ann's mom), and then Ann and I went to the mall together. I had the opportunity to brainstorm with Ann her daughter's upcoming 12th birthday party. For that moment in time, I stepped out of my usual state of sadness and walked around, chatted, and had lunch with Ann. It was funny, while looking around, Ann and I spoke about Peter's birthday which is coming up in November. In one breath Ann mentioned that she would watch Mattie so Peter and I could go out. Then she caught herself. To some extent, Mattie is dead, but his presence is so deeply felt and it is hard on some level to accept his loss. Ann is never afraid to mention Mattie in front of me, and I appreciate this very much, because he is alive and well within me.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Thank you for sharing that wonderful picture of Mattie with the haunted house he created. I think Mattie appreciated the "spirit" of what Halloween is supposed to be rather than being caught up so much in the collection of candy. I am not surprised that you hit a low yesterday the day after Halloween; you got through the difficult day but that doesn't make the other days easier. People describe grief as the ocean, with it ebbing and flowing like the waves or as a roller coaster with days that are so difficult that they can take your breath away. No one can take your grief away but as long as you are willing, friends and family will be there to help you over the most treacherous spots. I do want to say that as far as I am concerned you are a mother, you have been one since you knew you were pregnant and you will be one your whole life. Mattie is not physically on this plane of existence any longer, but everything I know about how you cared for him while he was well and while he was ill argues that "mothering" is in your soul. On Mattie's behalf I thank you for your love and advocacy for him."
November 1, 2009
Tonight's picture was taken in the Lombardi Clinic of Georgetown University's hospital. In the picture you can see one of Mattie's best cardboard box projects..... his Halloween House! The house features fantastic ghosts and witches! This box was on display during his celebration of life reception, and now sits in his room in our home. I shall never forget the creation of the Halloween House, or the incredible energy and enthusiasm Mattie generated within himself and within those around him with this project.Poem of the day: Please Don't Cry by Dawn Glenton
Please don't sit round my grave and cry,
I am not there, I did not die.
What makes you think that I would leave?
I'm with you mom, so please don't grieve.
Our bond on earth was much too strong,
Our love will carry on and on...
I'm with you as you go to bed,
I plant sweet kisses on your head.
I'm in the wind, the rain, the snow,
I'm with you everywhere you go.
Please don't cry mommy, can't you see?
I'm safe, my spirit soars, I'm free.
Today was one of those days in which the reality of Mattie's death hit me hard. I woke up feeling this way and sat in bed looking at pictures of Mattie, and really felt paralyzed to do anything else. Peter was out doing chores, but when he came home, he came upstairs to say good morning to me, and he could clearly see I was in need of company. He sat by my side and said nothing, but just held me. There are days I can process Mattie's loss better than others, but today, the reality was evident. Mattie is dead, I will not be seeing him in this physical world, and my role as a mom has also died with him. All of this is hard to face on a good day, but on a day like today, the feelings took my breath away. It is very hard to accept the fact that my once healthy and beautiful son is not here with us and that at age 7 we are forced to say good-bye to him and to the future we thought we were to have together.
In the midst of these deep emotional feelings, Peter and I looked out the window of our bedroom, and we saw a car on Route 66 that was backing up on the on ramp (in essence going the wrong direction). It was such a ridiculous and questionable sight to see that it made both of us stop what we were doing, and I burst out into laughter. This dangerous sight jolted me out of my funk periodically. Long enough to get up, cook breakfast, and get dressed.
Peter told me while he was at the grocery store this morning that he saw a mom with her two daughters having an argument right in the doorway of the store. Peter said it took every ounce of energy he had not to go up to her and give her a lecture. The lecture being instead of yelling at the girls because they did not want to hold hands with each other, that she should just appreciate the simple fact that she is lucky enough to have her two daughters in her life. Naturally as a parent, I remember the sheer frustration that raising a child can produce sometimes, but I guess the bottom line is now my mind set is just altered and forever different. Once you experience the death of a child, what truly matters becomes clearer, and the arguing and daily frustrations no longer seem relevant or important.
Peter and I did go out together for a little while today, but I found I was getting tired and also I did not want to be around a lot of people. So we headed back home and I slept for two more hours. I find that my body and mind have paid a high price for living under intense stress for over a year. I am chronically tired, and this intense fatigue affects my mood, energy level, and also my ability to concentrate on anything for long periods of time. I was once a person who could sit still for hours and read (articles, student papers, books, etc...) now I can't focus on more than two pages of content at a time. At times I get upset with myself, but during these moments, I try to step back and be more forgiving. It will take a while to build myself back up after the loss of Mattie, and I just need to be kinder to myself and allow myself this time to be and feel whatever I need to be.
My parents had two of the poster sized photos (which were on display at the celebration of life reception) professionally framed for us. We picked up these beautiful framed photos today, and we began hanging them in our home, trying to find just the right walls to display them. These photos are almost life like and they capture Mattie's spirit beautifully. I am so happy to have these photos preserved in such special frames. I had worries that I would forget Mattie's beautiful face over time, but these photos serve as constant reminders. However, I now see that the beauty of my son is within me, and I will never forget his face or his smile, and if I do, I only need to look in the nearest mirror, because we looked that much alike.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "It sounds like you managed Halloween pretty well considering everything. I agree, that it was unthinkable that Mattie would not be here to celebrate Halloween so quickly after finishing treatment. I was thinking about Mattie when we went out to buy candy for this year; we usually have a variety of chocolates to give out, but I told my husband, some children don't like chocolate (he thought I was nuts, I am sure, but I was thinking of Mattie) and so I bought some other candy as well. We offered choices at the door and every time someone chose other than chocolate, I thought of Mattie although with his entrepreneurial spirit, if he thought chocolate might have gotten a better price, he might have gone for that! I am amazed at how his spirit permeates so much of what I do although I did not really interact with him and I cannot begin to conceive of how it is for you. You are in my thoughts today."
The second message is from my friend and colleague, Nancy. Nancy wrote, "I loved the picture of Mattie as a Mummy! How clever and self caring of him to pick out something that would fit his situation. He was so aware of his needs at such an early age. As I've said to you a number of times, he had a wise, older soul for such a young boy. I am one of those people who wasn't raised with Halloween as a 'big deal.' I guess I dressed up, although, I can't remember doing so. As an educator, this was my least favorite holiday. It was a hard time for children who didn't have a costume equal to others and there was so much sugar, too much for many. I am so glad that Ann and you share so much. It is Very Important, under any circumstances, and with you adjusting to all of these activities without Mattie , it is even more. I am grateful that Mary is there for you too. Not only do you, both, share the death of your sons, you are sharing the grief process together with Mattie and Sully's death. I don't think I told you how sad I was when I read of Sully's death. Once, again, you gave to another while you are hurting yourself. The poem from Kristi is such a powerful reminder to each of us to show our feelings for we don't know what is in store for us. I thought of Mattie today as I sat in synagogue for the first time in a few weeks. It was the 6th anniversary of my Dad's death. During the Sabbath and other days when we read from the Torah, there is a prayer of healing. You know that I included Mattie each time this was said, hoping that it would help. It was difficult not telling the leader to include him this time. My one consoling thought was that G-d gives eternal life to the departed and watches over our loved ones for us. Each of your treasured memories is similar, it gives Mattie, an eternal life. I hope that you are feeling better physically and I am glad that you are with so many of your special friends and family. We are going to be away for the week, visiting Disney World with my daughter's family. I can't wait to see this fun place through my grandchildren's eyes. It reminds me how wonderful it is that you have so many visual memories of Mattie. Keep 'em coming! I love learning about him and you this way."
Saturday, October 31, 2009
If I knew it would be the last time
If I knew it would be the last time
If I knew it would be the last time,
If I knew it would be the last time
For surely there's always tomorrow to make up for an oversight,
There will always be another day to say "I love you,"
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am thinking of you today as I see all this Halloween stuff all around us and I know this day is difficult for you. Please know you and Mattie will be in my heart tonight as I answer the door for all the children and I wish fervently that one more seven year old was in this crowd. I am glad that you have a place to be tonight with Ann and Mary and I hope that you are able to cope.Whatever you feel (sad, angry, indifferent, tearful) is right, do what you can and if you cannot be the one at the door, that's okay too. Don't ask more of yourself than you can give right now. I will be thinking of you, praying for you and holding you gently in my thoughts tonight."