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!
October 24, 2009
Tonight's picture fascinates me, because I always wondered what Mattie and Anna (his physical therapist) were talking about when this picture was taken. I wasn't present for this therapy session, in fact I believe this was one of the days I received more bad news about Mattie's condition and Linda (Mattie's childlife specialist) was kind enough to stay with Mattie during physical therapy and to take this photo. What I love about this photo is it captures the art of negotiation that ALWAYS took place between Mattie and Anna. They both learned so much from each other, and it was a beautiful process to watch their relationship unfold.
Poem of the day: The Cord
We are connected,
My child and I,
by An invisible cord
Not seen by the eye.
It's not like the cord
That connects us 'til birth
This cord can't been seen
By any on Earth.
This cord does it's work
Right from the start.
It binds us together
Attached to my heart.
I know that it's there
Though no one can see
The invisible cord
From my child to me.
The strength of this cord
Is hard to describe.
It can't be destroyed
It can't be denied.
It's stronger than any cord
Man could create
It withstands the test
Can hold any weight.
And though you are gone,
Though you're not here with me,
The cord is still there
But no one can see.
It pulls at my heart
I am bruised...
I am sore,
But this cord is my lifeline
As never before.
I am thankful that God
Connects us this way
A mother and child
Death can't take it away!
Peter began his day by walking from our home to Roosevelt Island. When he returned he shared with me a beautiful leaf and two acorns. Why? Because this is exactly what Mattie would have done for me. Mattie was always bringing me some sort of gift from nature. When Peter handed me the leaf and the acorns, he did not need to say anything. The message was loud and clear. The message was two fold, which was here is a gift from Mattie, he would want you to have this, and second, most likely Peter was telling me he missed Mattie and had to take a walk.
We had breakfast together (which doesn't happen during the work week) and while eating Peter turned on a music channel through our satellite TV that plays musicals 24 hours a day. I have always loved musicals since I was a little girl. Perhaps this was because my parents exposed me to the beauty of musicals starting at a very young age, or the simple fact that I love music, especially music with a purpose. The beauty of musicals is they tell a story usually about people, emotions, and human dynamics. I made great efforts to try to pass this love along to Mattie, and I felt successful, because he too loved music. In fact when he heard music, he couldn't contain himself, his body had to move. This morning the song, Edelweiss (from the Sound of Music) started to play. I have no idea what came over me, but that is all I needed to hear. I began to cry. When Peter asked me what I was thinking about, my response was I regretted that this was not a musical Mattie ever had the chance to see or really hear. Later in the day, the song, "I don't need anything but you" from the musical Annie was playing. That too sent me right back into my crying state. Mattie loved this musical, and even saw it performed at his school. There have been many moments this week that have sent me back in time and reflecting on Mattie's loss. This is very new for me because prior to this week I was unable to even let my guard down enough to feel these emotions. Nonetheless, when I do feel these moments of sadness, great emotional pain takes over, and I am left pondering why Mattie died and how do we go on without him.
I had the opportunity to have lunch with Tamra and one of her daughters, Meredith, today. Tamra has been a major Mattie supporter this year, and also was one of our co-coordinators of Mattie's Celebration of Life Reception (which took place TWO WEEKS AGO today!). I told Tamra that I will never forget her support for us this year. I also reflected on an interaction we had together the day before Mattie died. Tamra came to drop by breakfast and tea for Peter and I in the PICU. She came into Mattie's room that morning, took one look at us and at Mattie, handed me the items, gave me a hug, and turned around and walked right back out the door. We said NOTHING to each other during this two second interaction. Nothing needed to be said. The hug said it all, because all three of us could see Mattie was dying. This non-verbal interaction remains etched in my memory because I thought it spoke volumes about Tamra's level of understanding of the situation and of our feelings.
We had a delightful lunch and what makes this special is I am having these wonderful opportunities to get to know people who have been supporting my family all year long. Tamra and I really did not know each other before Mattie developed cancer, but she (like so many of you) know so much about me from the blog, and I view this point in my life as my chance and good fortune to get to know you all better. Tamra's daughter, Meredith, is a junior at Mattie's school. Meredith had the opportunity to help me with Mattie a couple of times, so that Peter and I could go out to dinner. Mattie had a great time with Meredith and her sister, Louise. Meredith chatted with me today about some fundraising ideas she has for Mattie's foundation. I was very touched by her thoughtfulness and most impressed with her level of maturity and sensitivity. She did tell me that when she played with Mattie she felt as if she was interacting with a peer rather than a child. I found this comment to be very perceptive and made me smile.
Later in the day I went to the mall to return several items I purchased a while back. Selecting to go to the mall on a rainy Saturday with a migraine headache wasn't too smart, but I felt the need to be productive. While at the mall I bumped into a colleague of mine. This colleague and I had presented at several national conferences together on a topic that I developed over the years. Because I have been solely focused on Mattie this year, two of my colleagues decided to take the topic I developed and turn it into a book proposal, which apparently he tells me just got accepted. Now if you told me this good news prior to Mattie getting sick, I would have been thrilled. After all this was one of my goals for this topic. Certainly I am still thrilled, but my feelings of thrilled are a bit different these days. In fact, my feelings about anything are skewed. It is my hope that my colleague understood my less than enthusiastic response, because in all reality as I am processing Mattie's loss, nothing right now seems manageable, doable, or even interesting.
I received an e-mail tonight from a colleague and friend of mine. Denise let me know that she was traveling today and while on the road stopped at a Dunkin Donuts! She told me that she can never look at a Dunkin Donuts store now without thinking of Mattie. She even quoted the song that got us through the first few months of chemotherapy, "One Donut a Day." Some of you may remember this catchy song, featuring a dancing vanilla frosted rainbow sprinkled donut, which was Mattie's favorite! Thanks Denise for writing today and letting me know that you were thinking of Mattie!
I would like to share the Mattie tribute that Bob Weiman delivered at the Celebration of Life ceremony. Bob was Mattie's head of the lower school of St. Stephen's and St. Agnes School. However, to many of you, Bob is the magic man, the man who shared his skills and time with Mattie. Mattie loved learning magic. He liked the intellectual challenge of learning a trick, and the art of performing it. Mattie also loved the fact that this made him unique and interesting, and when he performed, people focused on him and not his disabilities.
Bob Weiman (Mattie's head of the lower school) Tribute to Mattie
Over the past couple of years I had the honor and pleasure of knowing Mattie Brown. As the head of the lower school at St. Stephen’s & St. Agnes, I remember Mattie as a kindergartner. He always had a twinkle in his eye- sometimes it was a twinkle of knowledge when he knew the right answer during circle time. At other times it was the adorable and impish twinkle of a boy who liked to have fun with his friends inside the classroom and outdoors. Last year and during the summer I was fortunate enough to be able to spend time with Mattie, and I was able to witness and experience the different facets of this special boy.
I got to know the perceptive and wise Mattie- Mattie knew what was going on at all times. There was no getting around that. Even when he seemed like he was not paying attention, he was listening and processing and eventually questioning. Mattie would have made a great spy.
I got to know the strong Mattie- Mattie had to endure so much, and he was a trooper! If one arm wasn’t working, he’d use the other one. If both weren’t working, he’d use his toes as well as most people use their hands. He was tough and adaptable. He was also strong in another way. Mattie was an extraordinary self-advocate.
I got to know the fun-loving Mattie- even when not feeling great, Mattie could be very silly. What joy he gave and experienced by sharing (often through the element of surprise) gross bugs and other disgusting creatures with his family, friends, nurses and other unsuspecting victims. Since I share this brand of humor, spending time with Mattie was right up my alley.
I got to know the creative Mattie- Mattie had a fertile imagination. He enjoyed dreaming up various characters and scenarios. And, as everyone knows, he also loved to construct amazing structures out of Legos and boxes. What a prolific and persistent builder he was. The architecture and engineering worlds have certainly lost out.
And I got to know the magical Mattie-for me the greatest joy was watching Mattie perform magic. I was so proud of him. To every trick he added his own dramatic flair. He also demonstrated his intelligence as he learned a multi-step trick called the Cups and Balls, which is usually reserved for middle schoolers. He amazed his nurses and brought joy to other patients at Georgetown with his great performances. Every year I teach the 5th graders magic and I phase out one trick and introduce a new one into the routine. This year I will teach the Peanutbooger and Jelly trick that Mattie and I learned together.
Mattie and Vicki and Peter’s fight against Osteosarcoma has taught me a lot. It has taught me what is important in life. It has taught me how to advocate and fight. It has taught me that it is okay to be silly even when (or especially when) things are very serious.
Mattie touched so many people’s lives and brought so many people, so many communities, together. Mattie’s goodness and positive spirit will live on in all of those who knew him.
A couple of weeks ago, when I was at synagogue observing Yom Kippur, I said a special prayer for Mattie known as Yizkor, or a prayer of remembrance.
This is the prayer:
May God remember the soul of Mattie who has gone to his eternal rest. In tribute to his memory I pledge to perform acts of charity and goodness . May the deeds I perform and the prayers I offer help to keep his soul bound up in the bond of life as an enduring source of blessing. Amen.
I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Thank you for posting Debbie Pollak's tribute. How wonderful to hear how Mr. Sun was created, I can "see" Mattie in my mind's eye "twirling like a leaf in the breeze, brushing with gusto"Debbie, you paint with words as well as with art materials, thank you. As for your day yesterday Vicki, I can just imagine how difficult it was to go past the campus and know that Mattie should be there with his friends but is not. I don't believe you ever get over the death of someone close, especially that of your child. You go on, you may be able to place a cover over your feelings so that you look all right to those who don't know you well enough to know how you feel but you don't "get over it". You survive, you look for ways to "make meaning" of your life, and you try to live in a way that honors that memory. I think that is the best one can do. In Mattie's short life, he reached far more than many of us as adults do. He made connections with so many people, some close to him like his family, friends and teachers and some who rarely if ever actually saw him, but his impact on all who were drawn into the circle of the dance of his life, was profound. Today find time to think about circles and Mattie, the sun and the moon, the circle dance of his being and the interconnectedness of all who held hands to celebrate him. I hold you gently in my thoughts."
October 23, 2009
Tonight's picture features Mattie with a submarine creation he made thanks to his kindergarten teacher, Leslie Williams. Leslie came to visit Mattie in the hospital, and Mattie asked her if she had any construction club materials from school with her. Mattie enrolled in an after school club with Leslie when he was a kindergartner. He absolutely loved this club. In fact, I always credited Leslie as the person who inspired Mattie to first create things out of cardboard boxes. A craft which he perfected in the PICU. In any case, fortunately for us Leslie did have materials in her car, which she went to get that day. After she left, Mattie became very focused on working independently to create the submarine in this picture.
Poem of the day (Thank you Charlie, this poem touched my heart!): What Makes A Mother
I thought of you and closed my eyes
And prayed to God today
I asked "What makes a Mother?"
And I know I heard him say
A Mother has a baby
This we know is true
But, God, can you be a mother
When your baby's not with you?
Yes, you can he replied
With confidence in his voice
I give many women babies
When they leave it is not their choice
Some I send for a lifetime
And others for the day
And some I send to feel your womb
But there's no need to stay.
I just don't understand this God
I want my baby here
He took a breath and cleared his throat
And then I saw a tear
I wish I could show you
What your child is doing today
If you could see your child smile
With other children and say
"We go to earth to learn our lessons
of love and life and fear
My mommy loved me so much
I got to come straight here
I feel so lucky to have a Mom
who had so much love for me
I learned my lessons very quickly
My Mommy set me free.
I miss my Mommy oh so much
But I visit her each day
When she goes to sleep
On her pillows where I lay
I stroke her hair and kiss her cheek
And whisper in her ear
Mommy don't be sad today
I'm your baby and I am here
"So you see my dear sweet one
Your children are okay
Your babies are here in
And this is where they'll stay
They'll wait for you with Me
Until your lessons are through
And on the day you come home
they'll be at the gates for you
So now you see
What makes a Mother
It's the feeling in your heart
It's the love you had so much of
Right from the very start
Though some on earth
May not realize
Until their time is done
Remember all the love you have
And know that you are
A Special Mom
I woke up this morning and in my e-mail inbox, I found this poem from Charlie. This is how I began my day. I found this poem so moving, and I can certainly say I explore this question a lot these days, "what makes a mother?" I realize Mattie's death happened not that long ago, but I do not have dreams of Mattie. Certainly I feel like I have had signs in my external world from him, but at the end of the day, that is all I have, signs. I have no little person to care for, no little person sitting on my lap, and no little person giving me hugs and kisses. I can't say this strongly enough but TIME DOESN'T HEAL ALL WOUNDS. If you truly believe this, then I think you haven't experienced the loss of a child. I find this statement so often used in our society, mainly because we just don't know how to handle death. It makes us uncomfortable, and instead of living in the pain and with the memories, we want to brush all of this under the rug and say with time things will get better. However, to me this statement is condescending, trite, and simply ignorant. Some losses will always be with you, and you may think that I am talking prematurely since Mattie has been gone less than two months. But I am and will always be Mattie's mom. He was a part of me, and by removing Mattie from my world in a way it is almost as if you have cut off my air supply. Sure I can breathe with less oxygen, but it is uncomfortable, difficult, and at times doesn't seem sustainable.
Today I had the opportunity to connect with Margaret. Margaret was Mattie's first preschool teacher at Resurrection Children's Center. However, Margaret and I became instant friends Mattie's first year at the school. On my way to Margaret's house today, I had to actually pass Mattie's lower school campus. Since Mattie death, I haven't been near the general vicinity of the campus at ALL! Somehow I never even thought about the fact that I would have to drive passed the school today to get to Margaret's house. That is until I got closer to Mattie's school. At which point a deep sadness came over me and I began to cry. I couldn't help but feel Mattie's loss in a profound way and then a part of me couldn't help but reflect while I am in pain, all of Mattie's classmates are just blocks away from me, at school, learning and playing. It is moments like this where I pause because I do not like this feeling of envy that I possess, and am conflicted with regard to all of my raw emotions.
I had a lovely lunch with Margaret. She took me to a restaurant with the perfect name, Le Refuge. Goodness knows I feel like I need a refuge! We talked for hours, so much so, that Margaret's car was towed off of the main thoroughfare in Old Town Alexandria. Margaret and I had an adventure tracking down her car, and in the process got a chance to talk more and see the beautiful architecture in Old Town, not to mention the gardens. This is something Mattie and I also shared, we loved to look at houses and gardens, and I know he would have loved today's experience. It is very hard to reconnect with the outside world, because in a way, I do not view myself as part of this world. Put me in a hospital, and I now feel comfortable. This is a complete 180 for me, because prior to Mattie's illness, hospitals scared me. I appreciate Margaret understanding where I was coming from, and being able to accept this and to truly be there to listen. We had moments of laughter and tears throughout lunch.
After visiting with Margaret, I went to see Mary, Ann's mom. Because I haven't been feeling well, I hadn't seen Mary all week. Mary was happy to see me and we sat and chatted for a while. She is feeling under the weather too, and did not feel like going to the dining room for dinner, which is always a tell tale sign that she isn't up to par. Instead, we spent the time looking at pictures, and picking out her outfit for Sunday. On Sunday, Ann has planned a memorial mass for her dad and brother, and Mary is eager to attend and wanted to arrange her clothes for this occasion. As we were talking Mary and I got onto the topic of Ann. I told Mary that she was a good mom and did a good job raising her daughter. She was very happy to hear this comment, and then paused and said, to me, "you are a special person, and you know your mom did a good job with you." Mary spoke to me about the fact that she will never get over the death of her son, similarly she feels that I will never get over the death of Mattie. She acknowledged that we have a lot in common, which I thought was astute, but then she asked me if I thought we were special some how because we both lost our sons. I told her this was a good question. I told her I don't feel special, but I think our sons were special and they had a higher calling which we can't understand. She had no response to me, but was clearly processing this. I just sat back in my chair, and then just smiled at Mary. Mary looked up and smiled at me, and whether she remembers this dialogue tomorrow is really irrelevant to me, because I know that in this brief moment of time, through our smiles we understood each other perfectly.
When I got home tonight, I cooked dinner for Peter and I and we sat down together at our dining room table and chatted. This is almost a foreign concept for us, and in many ways these quiet moments remind me of our pre-Mattie days. Nonetheless, our reality always weighs heavily on us and we sit with a great deal more pain and sadness than those previous days.
I would like to share the Mattie tribute that Debbie Pollak delivered at the Celebration of Life ceremony. Debbie was Mattie's art teacher, and the inspiration for the beautiful painting, "Mr. Sun."
Debbie Pollak's Tribute
Luda, Junko and I had lunch after setting up Mattie's artwork. As we left the restaurant, I said that I needed to stop in CVS to buy a hairbrush. I did not explain why I needed it.I went to the rear of the store and began squeezing the hairbrushes. A store employee asked... "What are you doing?" I replied... "I'm feeling the hairbrushes." She said... "May I ask why?" I said... "To see which one causes the most pain!" The girl stepped backwards to get further away from me (I can’t say that I blamed her). It almost made me laugh to think of what she was imagining me doing with the hairbrush. After all, it was Georgetown and almost Halloween. I decided on a brush and went up to the check out where I proceeded to tell my two friends what had transpired in the rear of the store. They just shook their heads. I tried to tell them that if I felt pain in my hand, I would not cry. The pain in my hand would distract me from the pain in my heart. Some 6 hours later, it was my turn to step up to the podium. I was concerned that everyone was feeling way past exhaustion. What could I possibly say that had already not been said? I began by saying that my relationship with Mattie was very different from all the people before me. Our relationship was serious, work oriented, heart to heart and artist-to-artist. As I tried to explain the concept and creation of Mr. Sun, I felt myself beginning to break down. I was squeezing that hairbrush so hard I thought my hand was bleeding. I raised the hairbrush in the air and cried out… “Luda, this is a two hairbrush speech!” At that point I had to stop my speech and relay the story behind the hairbrush. Some people laughed a little and it was enough to enable me to go on. I completed the story of the day I spent with Mattie watching him paint Mr. Sun. I told everyone how my contractor sent his brother to get a level to make sure the canvas was seated perfectly on the easel. When I told him it was OK. He said… “Miss Debbie, you said you want this to be perfecto. I will make it perfecto for your little boy.” “Miss Debbie, I know you three years. I know when you say you want perfecto, you MEAN perfecto!”The next day, Mattie, Vicki and Peter arrived. Two wonderful families were coming to provide a fun lunch and hot dinner. We ate lunch, frosted a big gooey chocolate cake to surprise Peter with for his birthday. We proceeded to the very steep huge staircase. Peter offered to carry Mattie up the stairs. Mattie said… “I can do it myself.” When we got settled upstairs, Mattie sent his parents back down to the lower level. The first thing Mattie asked was… “Miss Pollak, are we cooking or painting?” I replied…. “We are painting.” He then asked . ...“Why are we using butter brushes to paint?” I explained….. “I thought the handles would be easier for you to hold and the big bristles would allow you to get more paint to the canvas more easily.” As Mattie painted, I knew he could not reach the whole surface and continue the strokes in an outward direction like the rays of the sun. I rotated the canvas four times so he could reach every area with his working arm. He never complained, he just painted with the gusto of someone who had painted his whole life. He would not let me help him at all. He stopped painting at three different times. I was playing the soft flute music of Carlos Nakai and Mattie twirled around like a leaf in the autumn breeze. When he felt he was done painting he allowed his parents to come up to the studio. He had a giant smile on his face. Vicki and Peter gasped when they saw what he had done. Mattie wanted to add some feathers to the canvas. Vicki held feathers in line with the brush strokes. I hovered, glue gun ready, and added the feathers where he wanted them. Peter was taking pictures. Vicki and I kept suggesting feathers for the lower left quadrant of the painting. Mattie said…. “NO, it’s perfect. It’s finished.” It was, and it is, to this day, perfect and finished.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I can hardly walk into a store right now without seeing all the Halloween displays and all I can think about is how much Mattie liked Halloween and what he might have been this year.I understand your feelings about the pharmaceutical representative and the pumpkin. All I can say is that I can see Mattie dressing up a pumpkin in medical gear if he was in or around a situation when someone had to go masked. The mask would probably get stickers and the pumpkin would get special treatment (hands, feet, a house, etc) because I think he was inclined to find a way to make play of serious things and that is a good thing! I hope you begin to feel better; migranes make it impossible to concentrate on anything at all except pain-I have no idea how you manage to write the blog in such a condition. And I hope Peter is coping with his first week back at work, I know that can't be easy. For today, treat yourself gently and try to get back in touch with yourself, stretch gently, find a comfortable position and practice breathing."
The second message is from my friend and colleague, Sara. Sara wrote, "How beautiful Jack's essay is about Mattie. My goodness. I continue to be stunned at how well the children who knew Mattie have expressed not only their love and affection for Mattie, but their sadness and bewilderment at his loss. They are so verbally profound. It is so incredibly simple, true, and honest that it really stops you in your tracks. Thank you for continuing to post such messages you receive. It not only gives me a window into your daily life but helps me recenter myself to hear these messages. Children are just so amazing. There's no other way to put it. I wish as adults we didn't get so disconnected from these attributes we have in childhood. I wonder why that happens."
October 22, 2009
Tonight's picture was taken on Valentine's day in the Childlife playroom. Jenny (one of Mattie's art therapists) caught Mattie on camera after he delivered a box full of handmade valentine's to me. In addition, Mattie made me a crown of hearts, which I am wearing in the picture, to celebrate the occasion. Mattie told me I was his valentine, which clearly brought a smile to my face! This happens to be one of my favorite pictures captured this year, and I can remember this moment quite vividly as if it were yesterday.
Poem of the day: We'll Meet Again
Time to go, the light awaits
A friendly face by open gates
It's not about what's left behind
But peace and joy you're soon to find
Close your eyes be not afraid
Life's not about how long you stayed
It's a reflection of the lives you touch
To whom you've cared and loved so much
The time is short, yet all is done
You need not race the setting sun
For dawn is near a world anew
Is there and is awaiting you
The time for tears is long since gone
Its time for you to be moving in
No need this time for long good-byes
We'll meet again just close your eyes
I spent a good portion of my afternoon today at the doctor's office. I am not sure what I thought was going to happen during this visit, other than my goal was to address certain issues about my health. However, once she heard that Mattie died, this changed the whole course of the examination. Suddenly I became a walking case study in the making. My doctor did not know Mattie per se, but she had met him a couple of times, and each time she met him, she would comment on how he was getting cuter and cuter. Mattie of course liked her analysis. So it was a productive and thorough visit today, and she wants to keep track of me, so she scheduled me for another visit in a few months.
My doctor is located at the same hospital in which Mattie was born. It is actually hard to go back there now, because I can't help but remember this is where our lives began together. It is moments like this where it is so hard to accept that Mattie is gone. How can you bring a healthy baby into the world, and seven years later, he is dead? Something just seems very wrong about this picture. While I was waiting to see the doctor today, a pharmaceutical rep came into the office, with her wheeled cart of samples behind her. She greeted the staff at the front desk of the doctors office and then went into a 10 minute banter about how wonderful the office pumpkin was and how clever the staff was for outfitting the pumpkin with H1N1 protection. The pumpkin was wearing a mask and had tylenol packets taped to its fake pumpkin arms. Myself and two other people in the office were watching this interaction, and when she pulled out her camera and started taking pictures of the pumpkin by itself and then paired up with the staff, I just about lost it. She claims she is putting them on facebook, in case you wanted to know! I am not sure if the conversation alone bothered me or her insensitive nature to the fact that there are people in the waiting room who aren't feeling well, and she is joking about H1N1 flu. I still am not sure exactly why she irritated me, other than perhaps I felt how lucky she was not have a perceived care in the world other than to joke about a pumpkin, while I am sitting in the office having experienced the worst pain in my life (losing Mattie, not my physical pain).
After the doctor's visit, I then had the pharmacy experience. I waited at the pharmacy for an hour, while they were figuring out how to fill my prescriptions. The only reason I got out in an hour is because during the last 15 minutes, I basically flagged the pharmacist and sat right next to her until she filled the prescription. By the time I got home, I felt I put in a full day.
We want to thank the Lee family for dropping off homemade soup and fall fruits to us today. I truly appreciate your continued support and concern for us. We also want to thank the Ferris family for a lovely dinner. You all are making it very clear that your support for us did not end when Mattie died on September 8. Thank you for caring for us, and for helping me this week when I physically wasn't up for handling much.
I would like to share an essay I received from my friend, Jen, in Boston. Jen and I attended Boston College for graduate degrees in Biology. She has been following Mattie's blog religiously and in essence so have her children. Jen came across an essay her 12 year old son wrote about Mattie. Jack, Jen's son, only met Mattie once when he was maybe 2 years old. However, from his essay it is clear that Mattie's life made an impact on him. I was taken aback by this, by his ability to express his emotions, and his courage to face the challenges of losing someone. Jen tells me that Jack not only wrote this essay, but verbally presented it to his class. As Mattie's mom, I am thrilled to hear that a teacher would offer the outlet of such self expression, to allow a child the ability to process his feelings, and also give Jack the opportunity to educate others about Osteosarcoma and the topic of death. A topic many adults shy away from.
October 20, 2009
St. Agnes School
I can still remember the day my mom told me her friend’s son had a rare form of cancer. I believe he had Osteosarcoma. His name was Mattie and he was around 5 years old at the time. For awhile I didn’t think much about what this meant.
For a couple of months I went about life. I did normal things for a 5th grader. Then, one day going into 5th grade I saw my mom on a website. I asked her what it was. She once again told me about Mattie, and how his mother had started a blog for him.
Some days the blog would be happy. For example it would say things like, “Mattie saw The Lion King on stage yesterday, and he loved it.” Some days it would be sad and say things like, “It’s hard for Mattie to be happy during treatment.” I got used to hearing Mattie’s name around the house. We would pray for him every night.
One day in the first months of school, I saw an e-mail saying Mattie had died. I asked my mom if it was true. She said she was planning on telling me later.
I was so devastated I sat on a chair crying for 45 minutes. I wouldn’t have been so sad if it weren’t for his treatment nearly being done. I had never spoken to him. I am pretty sure I had only met him once. I couldn’t get over feeling sad.
I stayed sad for weeks. I eventually learned to get over this sadness. I now know how to handle sadness. I learned the value of loss and now handle it easier. I feel better about Mattie because I know he is in Heaven with God.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "There is a saying that the whole is greater than the sum of its parts. While nothing and no one can replace Mattie, it is pretty clear that with regard to memories, the whole is greater than the sum of the parts. Memories of Mattie, thoughts of Mattie are alive and well in so many people, even those who had little or no direct contact with him. So many of us are holding thoughts of Mattie and find ourselves reacting to objects, ideas and people in a new way that clearly has Mattie’s “prints” all over it. I appreciated Margaret’s tribute to Mattie and “seeing” him as a healthy little boy. I unfortunately, have collected most of my Mattie time via the blog after Mattie was diagnosed so this is really helpful in rounding out Mattie in my thoughts. And finally Tamra, thank you so much for your continuing care and concern for Vicki and Peter; I know they really appreciate the breakfasts, dinners and so many other thoughtful things you do."
The second message is a prayer from a fellow SSSAS mom and friend. Liza heard this prayer in church last weekend and sent it along to me because it made her reflect on Mattie's life.
Life is short.
We do not have much time
to gladden the hearts of those
who travel this way with us.
So, be quick to love,
Make haste to be kind,
and may the blessing of God the Almighty
be upon you and remain with you
all the days of your life. Amen.
October 21, 2009
Tonight's picture features the sign that Jenny and Jessie (Mattie's art therapists) created to welcome visitors to the fifth floor of the Georgetown University Hospital. This floor houses the pediatrics unit, and Jenny and Jessie wanted to create a welcoming sign that could be displayed near Linda's fish tank (a tank Mattie absolutely LOVED!), for people to see as soon as they stepped off the elevator. Why am I posting this creation, because you will notice a red footprint in the upper right hand corner of the sign. This cute footprint belongs to none other than Mattie Brown! I still remember Mattie making his mark on this sign. We were in The Lombardi Clinic, and Jenny and Jessie asked Mattie to put his hand print on the sign. Mattie refused, and seemed disinterested in the entire project, until I suggested he use "George" (his left foot) to make his mark. That was different and appealed to Mattie. I was so happy Mattie participated in this project, because I wanted something of Mattie to always be present on the fifth floor of the Hospital. I would call it a mom's sixth sense, but a part of me felt that something like this was important to do in order to capture Mattie's spirit.
Poem of the day: “ALL OF THE ABOVE” by: Deborah Sue Pollak (Mattie's art teacher!)
Some children naturally know how to draw ……
Some children love to paint ……
Some children can build things……
Some children know how to dance …..
Some children are pensive and thoughtful…..
Some children speak with precious voices….
Some children possess a natural color sense….
Some children giggle a lot………
Some children like to make people laugh…
Some children are good at planning…..
Some children are terrific at keeping their space neat….
Some children have a vision of what they want to paint..
Some children give cuddly hugs…….
Some children understand concepts with ease…
Some children work with great intensity…
Some children love icing cakes….
Some children are very funny….
Some children enjoy making surprises for their parents........
Some children are determined to learn new things…
Some children embrace challenges….
Some children appreciate people who help them…..
Some children are just plain wonderful to be with…
Some children take hold of your heart from the inside…
Some children are unforgettable.
To me, Mattie was…. All of the above.
I spent the entire day at home trying to regain my strength. It takes a lot to shut me down, but based on how I have been feeling physically and emotionally, I figured I wasn't going to do anything that was further going to jeopardize my health. So I spent the day resting, which is a foreign concept in my world. I find that when I am home I confine myself to our bedroom, and I really do not like spending time downstairs anymore. Mainly because downstairs is filled with Mattie! It is filled with memories, toys, his art, and you name it, and it is there. Everything is there except for Mattie of course.
I received an e-mail from Peter's mom today. It was an e-mail that addressed a question I have always asked myself.... and that is, what would Mattie's life been like had he survived? Sure we could theorize that he would have gone on to accomplish great things, if that is at all possible for a patient with multifocal osteosarcoma. Because from my vantage point, this diagnosis is a death sentence. However, I guess why Barbara's question intrigued me is because I always played this scenario out in my head. Mattie for all intensive purposes was quite disabled. Perhaps he could have learned to rewalk, but it would have taken great effort not only physically but psychologically. I can attest to the psychological devastation present in Mattie's life, and I always wondered how on earth we would work through all of this trauma and get him functioning back into society. This was one of my greatest fears, my second was that others would label him as being different. Sure different can be positive, but when you are 7 years old, you don't want to be different, you don't want to be confined to a wheelchair, you don't want to feel pain, anxiety, depression, you most of all you don't want to have cancer. I struggled with this dilemma about how to help Mattie re-engage back into the world, now of course, I can only dream about having such a dilemma.
My main accomplishment today was that I booked several doctors' appointments for myself. Many of you, I know, are mostly likely happy to hear this. However, based on how I was feeling, this is where my productivity ended. Peter and I want to thank Tamra for cooking us a lovely homemade dinner. I appreciate the recipe too! I am very grateful to Tamra for thinking of us today, and for really providing us with breakfasts for two weeks straight (not to mention meals and gifts throughout the year) while Mattie was dying in the hospital. You don't forget these acts of kindness. Peter and I sat outside on our deck tonight and had dinner. It was a bit chilly for me (well anything under 80 degrees is chilly for me), but I truly appreciated the fresh air. While we were eating, several slugs came out to visit with us. They apparently like to hang out on my plants. I am not a slug fan, but Mattie sure was. In a way, I felt Mattie's presence with us at dinner tonight, because if he were with us, he would have been having a major discussion about the slugs and most likely would have found a way to bring them closer to me. Needless to say, because of Mattie, the slugs have a safe haven in our garden, and seeing them reminds me of his laughter, his spirit of adventure and exploration, and his appreciation of nature.
I would like to share a Mattie tribute that was given at the Celebration of Life ceremony by Margaret. Margaret is our friend, but also Mattie first preschool teacher at Resurrection Children's Center. Margaret was instrumental in our lives and helped Mattie develop into the confident and happy child that he was.
Margaret's Tribute to Mattie
Mattie became part of my world at the tender age of 3 ½. He was one of 12 little angels
who entered my RCC classroom, the Pretend Room, in the fall of 2005. From day one he
had a unique presence and we were blessed with a special connection…. a connection that grew into a life-long relationship that is, and will remain, part and parcel of my being.
At 3 ½ Mattie was on the brink of “becoming;” becoming himself; an independent, self-sufficient, social individual, separate and distinct from his mom and dad. I had the good fortune of being part of this journey; sharing in the ups and the downs, the highs and the lows, the challenges, and most importantly, Mattie’s successes.
As you all know, particularly those of you who are parents, this time in a child’s life is a composition of moments and experiences that are at once exhilarating, emotional, exhausting, yet ultimately empowering! The day-to-day challenges can be really scary. Mattie, like most children his age, was tentative at times, but because of his natural curiosity and enthusiasm embraced these challenges and began his work of “becoming,” becoming the young boy that we who are gathered here have come to know and love throughout these past many months.
Upon reflection of my first year knowing Mattie I recalled that he typically came in each morning and after a quick survey of our classroom and new materials…his new world…. would often exclaim, “So, what’s this all about?” or “What’s going on here?” I’ll be honest; there were times when these two simple phrases drove me to distraction! But Mattie was curious about everything and was simply anxious to explore, experience, and create. Mattie’s first, and obviously lasting love was exploring his artistic side. He always gravitated to the art materials, particularly paint, glue, shaving cream, and masking tape. Anyone who spent much time in our room that year can attest to the fact the Mattie had a significant role in single handedly using a record amount of colored masking tape for anything and everything imaginable. Mattie’s artistic creations filled the Brown’s home; some of them even made it to my refrigerator art gallery! Mattie also loved to engage in pretend play with his new buddies. He loved to don the Batman cape and flit about exhibiting his “Super Hero” skills. He particularly enjoyed the role of a pesky monkey in the treetop loft when we acted out the beloved story, “Caps for Sale.”
Some of my favorite memories of Mattie are of him on our playground. Mattie loved and spent many happy hours playing in the sandbox with his trucks and his friends; it was here that Mattie learned how to be a friend among friends. The playground also provided physical challenges for Mattie; he rose to each and every one. For example, when Mattie arrived at RCC using the playground slides was not something Mattie was interested in attempting. However, with time and gentle guidance this too was a challenge that Mattie embraced. Before long, he was often the first one climbing the ladder or running across the clatter bridge to get to the top of the twirley slide first!
Vicki and Peter I want you to know that Mattie’s memory will live in all of us in very different ways. For me it will be in the small things, the mundane, sacred moments of everyday life. I’ll see his joyous face and little arms waving from the backseat of your blue station wagon as I wait for the light to change at Fern St. and Quaker Lane; it will be Mattie’s words, “It smells like you in here” as I dab my cologne on each morning; it will be the glow from the butterfly nightlight that shines in our home; it will be the smiles in Mattie’s school photos that hang on our refrigerator. More importantly Vicki, it will be through your infectious smile, Mattie’s smile, that Mattie will live.
Mattie’s spirit will walk with me as I collect seashells in summer, make gingerbread houses at Christmastime, and gaze at a crescent moon. Some of you may recall that Mattie’s sign while in the Pretend Room, a sign that he embraced and loved, was the crescent moon. Now it seems an almost prophetic choice. While we don’t make these connections in pre-school, the moon, and the crescent moon in particular, is a symbol of new beginnings; it is connected to rebirth and how our true essence really is immortal. This is Mattie; Mattie will forever live in my heart as “Mattie Moon.” Today, it’s easy to imagine my Mattie Moon, in yet another new world, sporting an impish grin and a complete set of angel wings earnestly inquiring of his fellow angels, “So, what’s this all about, what’s going on here?”
I end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "It is amazing how long we have to wait on the phone for a real person to do some two minute task such as make an appointment. That's the reason almost every medical number that you call starts the message with, "if this is a medical emergency, hang up and dial 911" because as you said, you can die waiting for someone to respond on any regular medical line. Hopefully, you did eventually get what you needed. Thank you for posting Ashley's tribute to Mattie; what she said about connections really resonated with me and with many others as well. I am trying to live up to Mattie's spirit, to reach out even when I don't feel like doing it, to try to find connections even when it is difficult and to look deep inside for compassion when my instinct is for myself. I will keep and treasure that gift in my heart and my life as I am sure many others will as well. I would like to share a story with you. My dad died very suddenly, he was not ill but had an undiagnosed brain aneurysm that "blew" and he was gone. When my mother wanted to connect with him she directed her comments to a little stuffed dog that always rode in my father's car; she said it still held some of his spirit. I've heard that sort of story from several people who've lost loved ones and the variety of objects that "hold spirit" is quite amazing. I hope you find some relief from your physical pain and illness today and know that I among many, am holding you gently in my thoughts."
The second message is from my friend and colleague. Nancy wrote, "It has been about 10 days since we've last said hello. I spent the last day + reading the latest entries on the blog. As always, the pictures that you have chosen say 1,000 words. His smile, his creativity, his sensitivity, all, come out in these pictures. I was moved by the view of the scan machine and his looking at the donut, a true contrast of images. One dreaded by many, the other soft, creamy, enjoyed by all who eat. I think that says a lot about Mattie. As I read your entries all these months and pondered how many unfair things were happening to your family, I thought of Rabbi Kushner's book, When Bad Things Happen to Good People. I know that you are not ready for reading or hearing another's story as every story is different. I just mention it. There is no good time for a parent to lose a child! I was so moved by the poem for today. As I've said earlier, I don't think Mattie will ever be gone, his body, yes, never his spirit. Too many people have seen this and felt this. Death is one of the hardest issues to deal with. Most, including me, don't feel that my words are the 'right' ones. How can I comfort you when your heart is so broken? I was glad to read that you have a doctor's appointment on Thursday. You know how worried I have been about you and your health. I know that Peter has gone back to work and that your days are not as structured. Your bed may seem a refuge, yet, Mattie would want you to get up, go out, be your wonderful, generous self, because, that is how you raised your son. Each day you wrote about Mattie's day, there was an element of thinking, feeling, and doing to help another. I know that Mattie's loss is so fresh and as Charlie said, no one person can experience his passing as you will. Peter and you have a strong connection and I am very grateful for that as this, too, will give you strength. Doing basic things like grocery shopping are monumental and you made dinner. Bravo!!!!!!!! Marv and I were sorry that we couldn't be at the Life Celebration, yet, having all these remembrances and sharings does bridge the distance. I hope that we can have a visit one of these days and wanted you to know how much I cherish my Mattie Mr. Sun cards. I seem to hoard them and have only used them for special, special circumstances. That was another wonderful way to honor your son. I have been amazed by your wisdom, at such an early age, remember, you shared your dissertation with me and your story of your grandmother and Mom. I cherish our friendship and hope that you will feel the sun each day as Kim referred to the Resurrection Sun at Mattie's school."
October 20, 2009
Tonight's picture features Mattie on a Wii fit. Mattie's preschool teacher, Lana, generously donated this piece of equipment to the Childlife room at Georgetown Hospital. Mattie loved it, and I am so happy that other children into the future will have an opportunity to play and enjoy it as well. It helps me feel as if Mattie's memory is alive and well on the fifth floor of the hospital. Mattie loved doing yoga on the Wii fit, and he was very good at it, despite having three limb salvaging surgeries, it did not hold him back nor did it effect his balance!
Poem of the day: When I Must Leave You
"When I must leave you for a little while
Please do not grieve and shed wild tears
And hug your sorrow to you through the years.
But start out bravely with a gallant smile;
And for my sake and in my name
Live on and do all things the same,
Feed not your loneliness on empty days,
But fill each waking hour in useful ways,
Reach out your hand in comfort and in cheer
And I in turn will comfort you And hold you near;
And never, never be afraid to die,
For I am waiting for you in the sky!"
It is hard to believe that Mattie died only six weeks ago. To us, it seems like the battle was only lost yesterday. But I have come to understand the battle will be something that will always be a part of our lives. I deeply MISS Mattie, and this week, for the first time, I am able to at least verbalize this to myself. In fact, when I enter and exit our home, I talk with Mattie's chimes (which our outside on our deck). To me they symbolically represent Mattie, and I always check in with them. But now I feel something has changed within myself , which has enabled me to let down my defenses, and when I look at Mattie's pictures or his chimes, I am able to say, "Mattie I miss you, I love you, and not a second goes by when I don't think of you." I am not sure what broke those defenses for me today, maybe because today is the sixth week anniversary of Mattie's death or the simple fact that I am not feeling well.
I woke up feeling very ill. I do not have the flu, but instead a chronic condition that I suffer from that resurfaces usually under times of great stress. Needless to say, with Peter at work, I knew I needed help today, since I could bearly function. As has been true for the last 14 months, when I have a problem I turn to Ann. Ann had her hands full with a sick child at home, but she added me to her mix. She and Bob both cared for me today. Bob helped me with medication, text messages, and locating an appropriate specialist for me. Ann ran around getting my medication, making lunch, and being supportive. Despite feeling so ill, I couldn't help but reflect today, that Mattie did not die until he felt there was a support network around who could care for us. What a gift, I just wish I did not have to receive such a life altering realization in such a hard and painful way.
In the midst of great pain today, there were funny moments as well. As I was waiting on hold with Washington Hospital Center to make a doctor's appointment, Ann's daughter, Katie, who was home sick, was sitting next to me. We were both commiserating about our pains. Katie observed the length of time I was on the phone waiting to talk to a doctor's office and she couldn't get over it. I joked that they were lucky I wasn't dying, because I would have died during the time I was waiting on hold. Minutes later Katie repeated the same comment to me while I was still waiting on the phone, this reminded me of Mattie for a second. He did the same thing to me when I spoke, he always reflected back what I was saying. For just that second in time, Katie made me smile. The other funny moment was when I spoke with Mattie's doctor today, Dr. Kristen Snyder. Peter and I were scheduled to have dinner with her tonight, but I knew I was in no state to go anywhere. Kristen joked with me that perhaps I just did not want to see her. Which you truly need to know is very funny and couldn't be farther from the truth! I am very fond of Kristen, and I am deeply saddened that she is not a part of our lives, and of course still Mattie's doctor. In fact, during Mattie's funeral, the only time I truly cried was when Kristen greeted me at the church. Kristen helped Peter and I fight the battle of all battles. You can't fight this battle and not become bonded with a person. Which is why those who were in my life during this 13 month nightmare have become a part of me. I miss these individuals, but they remain always in my heart.
This afternoon, I drove myself back home, and spent the rest of the day in bed. I am dealing with a great deal of physical pains, a migraine, and in this weakened physical condition, my emotions are literally all over the place. Which only verifies for me how connected our physical state is to our emotional one. By being more vulnerable physically, it is enabling me to reflect even deeper on the loss of Mattie.
In the midst of great sadness today, I received a beautiful e-mail from Karen's mom. As many of you know, Karen is my lifetime friend. We have been friends since 6th grade. What you may not know is that Karen lost her dad when she was only two years old. Today Karen's mom wrote to me about how she felt when her husband died suddenly. Karen's mom wanted me to know that she too felt numb and emotionless for months after her husband's death and she wanted to reassure me that nothing was wrong with me at all. This was actually refreshing to hear, since it not only normalized how I was feeling, but it made me felt heard and understood in a profound way. In a way, today's e-mail connected me with Karen's mother in a very special way, not only because she is Karen's mom, but because we are both women who have experienced a profound and unexpected loss. You will find Mrs. Fischer's e-mail to me below.
I would like to share the Mattie tribute that Ashley delivered at the Celebration of Life ceremony. Ashley is a fellow RCC mom and friend, but Ashley is also a reverend and coordinated the two Mattie prayer services offered throughout this year for our Mattie supporters. Ashley's words were very powerful and set a very meaningful tone for the rest of the ceremony.
Tribute from Ashley Goff Glennon
From the day our family learned of Mattie’s diagnosis of multifocal osteosarcoma, my spouse, Bob, and I were honest with our three kids, Sam, Maddie and Ryan, about Mattie’s health and well being.
Many times, they would find us reading “the blog” and ask to look at pictures of Mattie. We explained the process of chemotherapy, the incredible love of Vicki and Peter, the care and support of Team Mattie. We shared with our kids the truth of Mattie’s life.
After Mattie’s death, when he completed his Great Labor, Sam asked, basically, now what?
We started off by explaining that Vicki and Peter made a choice to have Mattie cremated and we explained what that meant. After our explanation, Sam paused and said, “did Vicki and Peter decide to have Mattie cremated so he can go back into the world?”
Back into the world. Sam answered his own question of “now what.”
“Yes,” Sam, now Mattie goes back into the world.
It’s a beautiful image for the beautiful life of 7 year old Matthew J. Brown.
In this Celebration of Life, we will hear stories of Mattie, stories of his life that will illuminate what we are called to take back into the world from our experiences of loving and living with him from birth to the end of his lifetime. Mattie’s sacred spirit will be the tether, the connective tissue that weaves together these stories giving us the essence of his legacy and life sustaining energy.
When someone dies, that person keeps on creating when those around that person keep on remembering. Mattie, created in the image of God, was a creator—creating not just works of art but creating friendships, laughter, family, and, with his journey with cancer, Mattie created community. So while Mattie’s death means his lifetime is over, his energy, his creative juices, what he created, is not over.
We need to pick-up where Mattie left off. This is how we celebrate his life; this is how we take him back into the world. Together, we have this shared responsibility to keep his legacy alive. There is a responsibility to remembering.
We stay connected to Mattie when we keep alive, when we keep on creating, those things that were embodied within him—friendship, family, inquisitive nature, mischievous actions, community. When we are connected to Mattie’s legacy, we are called to a deeper engagement with the world around us—from being the best friends we can be, to holding your family tight with love and care, to creating beautiful things with passion and exuberance.
We welcome and receive Mattie back into the world when we live as Mattie, Vicki, and Peter lived together….when we live by each others side; when we fight like hell for each other, when we care for each other; when we make a difference together; when we act and live as each others keepers; when we welcome agents of healing, mercy and hope into our lives.
Mattie may have been just seven years old, but he was a creator. He has a legacy.
What is Mattie still creating? What is his legacy for you? What has he left us with? What work still needs to be done on Mattie’s behalf? What stories of Mattie are imprinted upon your hearts?
Because Mattie was 7 years old, he still had the capacity to live in the moment, to see everyday as a new day, a day with meaning and purpose. This is a spirituality of living.
So what does it mean in our day-to-day lives to live into Mattie’s legacy? How does celebrating his life change how we view our world?
Maybe….when you see cardboard boxes, empty egg cartons, paper towel rolls, you see not just trash but you see the potential for an artistic masterpiece.
Maybe….when you look out at the ocean, as Mattie did, you see the water for what it is—playful, powerful, awe inspiring.
Maybe…it’s time to love your friends with all your heart and soul just the way Mattie loved his friends.
Maybe…you’ll realize you need to be demanding to create what is right and fair and just. In that moment, you can remember and celebrate Mattie and his mom.
Maybe… when a co-worker needs compassionate leave to love his/her family, you advocate and care for that co-worker. In that moment, you celebrate and remember Mattie and his dad.
Maybe…when you find yourself thinking outside the box, you will remember Mattie and his clinical/medical are team who loved him down to his cellular level.
Maybe…. the next time you wear something that says Boston Red Sox, those clothes feel a little different.
When we remember, when we act, when we celebrate Mattie’s life, the Holy One, a sacred Spirit, is present. Empowering us to pick-up where Mattie left off, calling us to make his stories our own, challenging us to integrate Mattie’s own holy Spirit into how we live, move, and have our being.
Vicki and Peter. We love you. Mattie is still a creator. In the stories today, we will hear how and what he created. His lifetime may be over but his creative love will never end. This community is now the keeper of Mattie’s life and stories, bound together by a cord, sustained by the Holy, which will not break.
Hopefully you will see Mattie’s creative energy and passion through us. This is how we will celebrate his life and memory. You have our promise. May stories of your Mattie, especially the ones we are about to hear, guide us into being the most loving and compassionate people we can be.
We receive these things and more as we continue to create what is good in memory of Matthew J. Brown, when we take him back into the world. We can connect with a deeper sense of purpose and vision. We can have a greater sense of responsibility to others.
We may have come to this service and reception wondering how we can say goodbye but goodbye really isn’t enough. It never is. We need to keep on creating.
After this service and reception have come to a close, as we have been enfolded in stories that celebrate Mattie’s life, we will leave not just saying “goodbye” but saying, “Hey, Mattie, look what we are creating.”
May it be so and let us listen to Mattie stories of hope, promise, and celebration.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am sorry you are not feeling well but I am not surprised. Grief suppresses the immune system and it is normal for people to get physically ill while in mourning. It is real and not an imagined illness. As for disassembling Legos or giving away any of Mattie’s possessions, you will know when the time is right. Don’t let anyone push you with a “schedule” of how it should be. It should be as it will be. Today, take some time to appreciate the warmth of the sun and how it is reflected in Mattie’s art and in all of our hearts."
The second message is from Karen's mom. Mrs. Fischer wrote, "As I read your blogs I say to myself, "I know how she feels." I have been there. After the death of my husband, Louis, I could not cry. Everyone around me was crying, so I felt there was something wrong with me. I felt disassociated from the world in general and from the caring and loving and supportive family and friends around me. I was in shock and my grief just paralyzed me. It took a long time -- maybe months -- for me to be able to let go and weep.
William Wordsworth wrote these words in his poem "Intimations of Immortality" and they offered me some consolation at the time.
Thanks to human heart by which we live,
Thanks to its tenderness, its joy and fears,
To me the meanest flower that blows can give
Thoughts that do often lie too deep for tears.
Like you, I felt that I had lost so much of "me" that I was uncertain of who I was. I was no longer wife, but widow. We had only just moved -- to a different part of the city, but away from familiar places and people we were close to. The new people--new neighbors-- did not know Louis or what we meant to each other. And I felt like the real me was not there. So much of what you say about your own sense of self and identity are familiar to me...and probably to anyone who has suffered such a profound loss. I have no doubt that your inner strengths, your wonderful Peter and your circle of devoted friends will help you find yourself again. It's a slow process. But after a time, you will realize that you are the Vicki you always were except a whole lot sadder, wiser, stronger and always always Mattie's mother. I know in my heart you will cope and persevere. It all takes time."
October 19, 2009
Tonight's picture features Mattie sitting on a bone scan machine at Georgetown University Hospital. Mattie had to fast for 12 hours to have this procedure, so by the time the scan was complete, he was ravenous and devoured the donut Ann brought him. He couldn't wait to get off the machine! He was that hungry. In all reality Mattie was a real trooper, he put up with scans and tests, that would have tried and scared even the most patient and the bravest of adults.
Poem of the day: He Only Took My Hand
"Last night while I was trying to sleep,
My son's voice I did hear
I opened 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.
God did not take me from you,
He only took my hand."
Last night I began to feel ill, so I knew it was going to be a long night ahead. For many of my readers who have been worried about my physical health this year and have expressed concern to me, you will be happy to know that I am seeing my doctor on Thursday. I only wish that my doctors were as half as nice as Mattie's team at Georgetown. If I could clone these women, then maybe I wouldn't mind visiting my doctors so often.
At 7am, I popped up because I could see Peter was leaving for work. I wanted to at least say good-bye to him and wish him a good day back at work. Peter transitioned back to work slowly today, and everyone in his office was sensitive to his circumstances. In all reality, I am sure for Peter's colleagues it is hard to know how to greet and interact with him after losing Mattie. Nonetheless, they all worked through this today, which seems like the most thoughtful thing to do, because afterall there is no human resource policy or strategy on how to handle an employee who just lost a son. I continue to be impressed with how Voxiva has managed this crisis, and when Peter came home tonight he shared with me a stack of sympathy cards he received from his DC office and Voxiva offices around the globe. I want to personally thank the following offices for your meaningful and heartfelt cards: India, Kenya, Rwanda, Nigeria, Peru, and Mexico! It has meant a great deal to us knowing that Mattie's story has traveled around the world, and that prayers and good thoughts were coming to him from all these locations. THANK YOU!
As for myself, today was a hard day. It got better toward the later part of the day, but the morning and early afternoon were tough. I began the day crying and then sitting in Mattie's room for a while. I looked through his photo albums and landed up reflecting on just how unfair this whole situation is. Mattie did not deserve to suffer, and we don't deserve to be childless. I looked at some of Mattie's clothing and I just can't believe he is not around to fill these items or to play with his toys, and the list goes on. It was the kind of day in which I did not even have the energy or fortitude to speak with Ann. Peter heard this, he called me to find out what was going on. All I can say is that I truly appreciate all the wonderful e-mails and calls I received today. Thank you for not forgetting about us, and for supporting Peter and I.
I eventually pulled myself together and got ready and went grocery shopping. I haven't bought groceries for our home in months. At first this task seemed overwhelming because there was so much to think about purchasing in order to start using my kitchen again. One observation I made in the grocery store is that stores cater to people with children. There are children's items every where from toys, balloons, to foods. I observed several moms shopping with children today, and I couldn't help but remember those days with Mattie. Shopping with Mattie was an art form. He never liked the shopping cart to stop moving, which made picking out food an absolute adventure. Basically it was drive by shopping, and fortunately I got to know just where things were on the shelves, so I could push him and grab items at the same time.
Later in the afternoon, I had the opportunity to pick up Ann's oldest daughter, Katie, at school. Katie attends Mattie's school, but she is on the middle school campus. Though I was surrounded by children, it seemed okay, because this was NOT Mattie's campus. In true St. Stephen's fashion, the school pick up line worked efficiently and safely. It was actually wonderful to see, and to see how happy the children appeared as they were waiting for their families. Ironically when I picked up Katie at school, and she sat in the car with me, I was instantly transported back in time. Not to my time with Mattie, but my time with my mom, when she would pick me up from school. I am not sure why, other than it reminded me of the time I used to debrief about my day, and it was fun to hear about Katie's day and the activity she did with her sixth grade class today. I spent several hours with Katie and then later on had the opportunity to spend time with Abigail. Abigail point blank asked me if I thought Mattie would be proud of her and her ability to assemble this intricate Lego train. She then informed me this is just one of many more Lego designs she plans on doing. Her next purchase she wants to tackle is a Victorian house. This house was one of Mattie's prized possessions and it still is assembled in our living room. I don't have the heart to disassemble these Lego creations just yet. As Mattie's mom, I can't help but see a deep connection between Abigail's Lego building and her feelings and reflections on her friendship with Mattie.
After months and months away from the kitchen, I can officially say that I made dinner tonight. Peter and I had the opportunity to sit together, talk about our day, eat a peaceful dinner, and try to create some sort of new world for ourselves.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am concerned for you today with Peter gone back to work and you sounding as if you want to hide away from your feelings and other people. I understand the desire to mourn in private, to keep one’s feelings tamped down but I am not sure this is a good path for you to walk for a sustained period of time. I am sure you feel your pain is so tremendous that no one could help you with it. This level of pain is not something to be borne alone. Clearly you can’t come to terms with all of it at once, it is overwhelming, but try to trust enough to make a start. Kim’s tribute was wonderful and put into words what so many of us felt, that we wanted so much to see Mattie grow up, to see the person he would come to be and that having this opportunity cut short is just so wrong. It is as I remember hearing, like a story with the end torn out; no way to know what might have been. I am sad for this was a life story with so much promise and now it is done. Mattie’s story lives on in the memories of those who loved him, who cared for him and who were his friends. There are, I know, many joyous memories for you behind the painful ones. I do hope that as time goes on you are able to focus more on those rather than the more recent ones of trauma, pain and loss."
The second message is from a friend I met through Mattie's soccer group. Elizabeth wrote, "I can't believe it has been a full week since Mattie's funeral. I have had this email drafted for several days and am finally getting it sent! First of all, let me apologize for not being able to compose myself when I saw you at Mattie's Celebration of Life reception! I am so sorry for carrying on and not being able to stop bawling long enough to speak to you! I think that the funeral was just so moving and touching that I could not hold back the release of emotions over the loss of Mattie. It continues to feel just so unfair and difficult to understand! I want you to know that last Saturday was a difficult day for me but it was also a day which helped me grieve for Mattie and be part of the community that loved him and is missing him. Everything that day seemed to set me off crying, from the beautiful words that were spoken of Mattie, to the music and the wonderful pictures and gorgeous art work at the reception. The violinist was absolutely wonderful and so young! The large pictures of Mattie seemed to have him projecting off the canvas right into the room! Like you and some of the others who have written you, I too was irritable on Saturday. I think it goes back to what your former student said about being frustrated at the loss of Mattie's precious life and not being able to do anything about it or to help you through your grief. After speaking to you and exploring the beautiful reception, the one thing that finally allowed me to gain my composure was the food - of all things! I think I had exhausted myself at the funeral and was so famished that once I tasted the wonderful spread that you put out I was able to calm down a little. Funny isn't it. I absolutely agree with your other blog followers that the afternoon was just about perfect in demonstrating what a wonderful boy Mattie was and showing everyone the deep love and admiration you and Peter have for him. The size of the gathering speaks to the love and admiration your friends and colleagues have for your family as well. May these days ahead be easier somehow knowing that you have a large support network and that Mattie will always be remembered - no matter what. Best of luck with the Foundation. You are a resourceful, intelligent, sensitive, inquisitive and capable individual - I know you will do just great with that work."
October 18, 2009
Tonight's picture features Mattie dressed as a clown. The Lombardi Cancer Center at Georgetown arranged for private box seats at the Verizon Center in Washington, DC, in order for Mattie to see the circus. This was Mattie's first and last visit to the circus. He went with Peter, myself, and his grandparents. In addition, we met up with Brandon (Mattie's big buddy) and Toni (Brandon's mom) at the circus, and Brandon gave Mattie the red clown nose. This was a night to remember for Mattie. He had a glorious time, and I can still recall his smiles and laughs from that night.
Poem of the day: Tears and Rain
I look out
On tears of gray
Another long day
The hissing sounds
Of falling rain
Call to me and
Reflect my pain
I miss you
With every breath
And fear that nothing
Will fill the emptiness
I cannot move
I will not see
Those empty days
Stretched in front of me
Take my hand
And help me ride
Out the waves
Of sorrow inside
Until I can stand
And see some joy
In the memories of
My beloved boy.
I want to begin tonight's posting by thanking all of our faithful blog readers. I am very well aware of the fact that you continue to check in with us, and I am amazed that Mattie's blog is visited 500 times or more in any given day. Mattie's gift of community is still alive and present, so much so, that even in his death, we are all still bonded together. That to me speaks volumes about Mattie and about all of you. I also appreciate all the supportive e-mails and the offers to meet for a meal and chat. I realize for the most part I am turning down most of these lovely offers because I am just not ready for them. It is my hope however, when I can start letting people back in (and I have no idea when I will be able to do this), these offers will still stand. As I am sure you can imagine, I don't know if I am coming or going on most days, and some days I wonder if I will ever feel the same, or simply FEEL anything.
As I sit tonight and write this blog, I am very aware of the fact that Peter heads back to work tomorrow. Peter has taken two and a half months off from work. What an amazing and loving company Voxiva has been, and I feel somewhat comforted to know that we have no regrets in the amount of family time we were able to spend with Mattie up until the end of his life. Mattie really needed Peter's presence, and the three of us really needed this time to say good-bye. The time away Peter has had from work, has helped us to begin to grieve, but grieving the loss of a child is not easy. It isn't resolved in a week or two. In fact, I beg to say that it may not even be resolved in a year or two. We have a lifetime of grieving ahead of us, of which now I would imagine will be the most painful. I try to put myself in Peter's shoes, and I just admire the fact that he can pull himself together and go back to work tomorrow. I know this is NOT easy for him either!
Working is a fact of life, but I am so far from accepting any reality right now, so much so, that I continue to isolate myself. I have yet to do things that I once did prior to Mattie's illness. Such things that connect us with the outside world, such as reading a newspaper, watching TV, talking on the phone, etc...... In fact, I have no interest in what is happening in the world around me. For example, tonight, Peter was on the phone with his brother and they were talking about the baseball playoffs. Now I admit I was never a sports person to begin with, but tonight hearing this conversation made me just shake my head. The dialogue in my head was, "who really cares how the Yankees are doing, or any other frivilous team for that matter!" In fact, unless you chat to me about serious life issues, a part of me seems to just shut down. I do listen, I do care what others are saying, and I am trying to feel impassioned about things that matter to others around me, but that is just it, my passion has been extinguished.
Tonight, Peter and I went over to Ann's house for dinner. Abigail was proud to show us her Lego train that she has been working so diligently on. She feels that Mattie would have been happy with her selection and thrilled with her skills. I agree! It is interesting to see how Abigail is processing her grief through her connections with Legos. It amazes me just how therapeutic Legos have been. I know they were Mattie's saving grace. Peter and I are very thankful to have Ann and her family in our lives, because they are helping to draw us out, but also are allowing us to feel whatever we need to feel at any point in time. It is very special to be included in Ann's family, and at the same time, it also illustrates to me what I am missing in my life. I am missing Mattie, my child. When you lose your child, nothing makes sense anymore, and there are times when I tell Ann that I feel not necessarily jealous, because I don't want to ever feel this way about something that brings my friend love and joy, but I do feel like I wish I had what so many of you have. The luxury of having a child in my life, not any child, but Mattie. I realize the daily grind and schedule of parenthood are impossible, I lived it! But having a child is not only a responsibility of great proportion but it is a luxury. A luxury, because at any point in time it can be taken away from you, and then like so many luxuries in life, you have to figure out how to live without it. Unlike other luxuries which are expendable, a child isn't. So my message tonight is, get yourself out of bed, or shut off the TV, stop surfing the net, put down your book, or whatever is applicable in your world and go peek in on your child. Give him/her a hug or kiss, and if your child doesn't live in your house, then send him/her a text message or e-mail. If you think I am joking, then let me assure you, I wish I had the luxury of Mattie down the hallway from me right now.
I would like to share the Mattie tribute that Kim Messinger (Mattie's preschool director) delivered at Mattie's funeral last week. Kim delivered a beautiful and meaningful message, which will remain with us always.
Kim's Tribute to Mattie
Hello. I’m Kim Messinger, and I’m the Director of Resurrection Children’s Center.
Four years ago, at our annual Open House where we open up our school to parents who are interested in enrolling, one of the teachers from the three year old classroom came and found me. “There’s a mom down in the Pretend Room with a lot of questions,” the teacher said. “Could you come talk with her?” Well, I’m sure it comes as no surprise to any of you that the mom with all the questions was Vicki. I talked with her a great deal that afternoon, she came back another day with Mattie for a visit, and apparently we passed muster. Because the following fall, three year old Mattie joined us. And, happily, he thrived in our school -- a place where he was cherished for the incredible little guy that he was.
But we didn’t get just Mattie. No, Mattie’s family was a package deal and Vicki and Peter wove themselves – tightly – into the RCC community as well. And they made it a better, stronger place for children and families to be. Vicki became a forceful and proactive member of our Advisory Board. She advocated for and participated in our weekly visits to Goodwin House, our next door retirement community. If you needed help, advice, counsel, Vicki was there.
And Peter, too. He led our school through a much needed strategic planning process. And he loved to be a parent helper in Mattie’s classroom. One of my favorite photographs, one that made it into our most recent brochure, is of Peter, outside in the courtyard, surrounded by children, cracking open coconuts so everyone could feel, and smell, and taste something new and different.
Like all of you, over the past year and most especially over the past weeks, my thoughts have dwelled with Mattie and with Vicki and with Peter. And when Vicki asked me to share some of those thoughts at this service, I was equally honored – and terrified. Terrified of not getting it right. Of not finding the right words.
But eventually, I shared with Vicki that I had come to appreciate the very hard task of speaking today. Preparing helped me focus my thoughts – helped me better understand what I was feeling – and begin to come to come to grips with this tremendous loss in all our lives.
Because what happened to Mattie simply isn’t fair. Folks in early childhood education talk a lot about just what the “work” of children is. Well, the work of young children is to play, and to learn, and to live. Not to die.
Folks that work with young children always wonder what a child will be like 5 or 10 or 15 years down the road. We laugh and make guesses. What will he accomplish? Who will he become? And it just isn’t fair that we can no longer wonder what the future holds for Mattie.
For some of us, this might be the first real brush with life-changing tragedy. Others of us may already have felt the loss of innocence that comes with the knowledge that there are some things we simply do not have any control over. The knowledge that bad things can, and sometimes do, sneak up on us.
So how do we deal with all this? I’m sure most of us have cried. I suspect some of us have howled with anger, or retreated into ourselves to nurse the hurt.
But today, we deal with it -- like this.
We come together. We come together and we coax the joyous memories hiding behind the disbelief and pain – out of each other. Memories of a little boy who could be so stubborn – and so sweet. Who loved to race across a playground – and to sit quietly and listen to a story. Who loved to build pirate ships, paint pictures, and tell horrendous “knock knock” jokes. A boy who could drive his teachers a little crazy one moment – and enchant them the next.
Yesterday afternoon, Mattie’s first teacher at Resurrection Children’s Center, emailed me the words she has struggled to write about Mattie over the past couple of weeks – the words Margaret plans to share with you at the celebration of his life later this afternoon. And as I read, I cried. But even with the tears streaming down my face, I realized that I was smiling, too. Because Margaret’s words helped me remember some things I had forgotten. They helped me “see” Mattie again. And that made me happy.
My youngest daughter was one of Mattie’s teachers during summer camp. And late last night, Caitlin drove home from college because she felt such a strong need to be here today. We sat together on my bed and talked about Mattie. And we ended up laughing. I remember, so clearly, how Mattie loved to build pirate ships. But until she shared it with me, I hadn’t known that every day for two straight weeks, he had “forced” Caitlin to “walk the plank!”
We often hear, and many of us say, that it takes a village – a community – to raise a child.
But perhaps it is even more important to understand that it takes a village to care for a dying child and his family. It takes a village to grieve for that child. And it takes a village to shape, hold and share the memories that bring hope, and eventually, peace.
I am awestruck, and humbled, to be standing before such a village.
At Resurrection Children’s Center, the children sing a special song just about every day.
(Note: Kim actually sang this portion!) Oh Mr. Sun, Sun, Resurrection Sun
Please Shine Down On Me…
I believe that Mattie is now a part of the Resurrection sun – and all the suns that fill all the skies everywhere.
Mattie, because we knew you, you will always be a part of us. May you shine down on us, help light our way, and warm us – forever.
==========================================================I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "Dr Snyder's tribute to Mattie was beautiful and inspiring. Her respect for who Mattie was as a person, beyond his status as a patient speaks to how we all hope those who treat our illnesses will see us. Mattie made us all see him as a unique individual, full of life, passion, courage and warmth. How difficult it must be on this day that seems so gray and lifeless to be without your Mattie sun/son to warm the moments. I carry Mattie's sun picture in my mind's eye and in my heart and I find it helps dispel some of the heaviness of a day like today. For today, find some space to reflect on how so many people carry pieces of Mattie that they will share with you when you have trouble finding your own positive memories."
The second message is from one of Mattie's favorite babysitters. Emily wrote, "I just wanted to let you know that I have been thinking of you. The funeral mass and reception were absolutely beautiful. I was so glad that I was able to get the chance to give you and Peter a hug because I have been unable to do so for so long. My eyes did not fully dry until hours after we had left D.C. The picture slideshow really touched me and I was weeping throughout the entire show. I was not surprised that there was barely standing room at the reception as the amount of people there were only a small sample of the population of people touched by Mattie. You and Peter created a loving community through bringing Mattie into this world, and although he is not physically here with us, he lives on in the hearts of this loving community brought together because of him."
The final message is from one of Mattie's outstanding HEM/ONC nurses. Miki wrote, "What a beautiful mass it was last Saturday. Every single moment of it was so beautiful and holy that it brought me to tears. It was truly the mass for Mattie, for beautiful Mattie and I definitely felt his presence. Although we could not see him, he was definitely there during the mass. You two looked absolutely beautiful and glowing as well and I again felt the unbreakable tie among the three of you. It was so special... The reception after the mass was very enjoyable as well. It made me realize again how talented and creative Mattie was. I remember his art work always amazed me. He had such a unique perception on even the little things, and expressed them in his own unique ways. I was always impressed by that. They were truly amazing to me. I recognized a lot of his works that he did during his stay at Georgetown. Each one of these pieces made me flash back to the day that he made them in the hospital. I clearly remember those days. They were just like yesterday... Vicki and Peter.... again, thank you for giving me the opportunity to take care of your amazing boy, Mattie. It was such a honor to be in some part of his life, and thank you very much for the opportunity to get to know two of you. You two are amazing parents of which I don't come across every day. You two made such a big impact and caused me to think twice about life itself. Please take care of yourself. I know you will face some challenges in your lives for a while, but it won't be forever. You two together definitely will clear those challenges."
Tonight's picture features Mattie the Magician! Mattie was performing magic tricks for his Georgetown buddies in the Childlife playroom, under the guidance of his magic mentor and pal, Bob Weiman. Magic meant a lot to Mattie, because it gave him the outlet to express himself and develop a skill that was unique and fascinated others.
Poem of the day: A Rainy Day
Things are not as bad
As they now may seem to be
Your life will still go on
Even though it’s without me
These are not tears of sadness
On this day of rain
Please look at them as tears of joy
For I am now free of pain
You can not know the freedom
Or the peace that I now feel
I hope this is some comfort
As you all now learn to deal
The battle now is over
And in many ways I’ve won
While you might think it is raining
I am warm amidst the sun
Today was an absolute blur for me. I did not go to bed until 3:30am, and when I woke up today I was in a fog and not in the best of moods. I do realize that my complete lack of sleep is not helping my mood or my ability to process Mattie's death. However, my mood never improved as the day wore on. For the most part I decided I did not want to get out of bed nor did I want to eat. Peter did get me up and out for about an hour, but then I wanted to come home because I was tired and wanted to go right back into bed. So clearly this was not a good day for me. As the evening approached, Peter and I were invited out to dinner with Ann, Bob, and Bob's family. At first I was debating even going because I had a migraine headache, felt ill from not eating all day, and also thought I was going to be the worst of company. However, in true Ann fashion, she some how pulled me out of the funk I was in, and slowly as I engaged in conversation and listening to others, the fog that I was in began to lift. Today's fog and mood wasn't due to reflecting on memories or any one thing in particular. It was simply a total and absolute feeling that came over me that just left me life less. I would like to say I hope never to have another day like today, but I have learned not to speak in terms of absolutes, nor do I know what each day brings me as I move from one day to the next without Mattie.
I would like to share the Mattie tribute that Dr. Snyder delivered at Mattie's funeral last Saturday. I can't believe a week has already flown by since Mattie's funeral! Dr. Kristen Snyder was Mattie's oncologist and truly understood Mattie and my family. In fact, though Kristen was Mattie's doctor, we worked very closely with her and she treated us as a vital part of Mattie's care team. Because of the nature of Mattie's situation, I always felt very close to Kristen. Maybe because we are close in age, or the simple fact that we respect each other, and I admired her dedication to always do the right thing for Mattie. I think it is very evident from Kristen's tribute that she is a competent and compassionate professional.
Dr. Snyder's (Mattie's oncologist) Tribute to Mattie
The meaning of the name MATTHEW is “Gift of God.”
Today, I would like to take a moment and reflect, not only on the gift Mattie is to each of us, but the many gifts he bestowed upon all of us.
I am blessed to have been a part of the medical team taking care of Mattie. His fight, his determination, his courage, and the advocacy of his parents Vicki and Peter were and continue to be an inspiration to all of us. At times, I believe, we watched in awe as this family battled and conquered. Their hope, a gift to each of us, telling us then, and telling us now….NEVER GIVE UP.
You will see later today, what Mattie could conjure up inside a cardboard box. As the medical team, Mattie asked each of us to think outside of the box—to make our exams entertaining, to make physical therapy an obstacle course, to make his time at the hospital an exploration of art & design. Mattie made us practice medicine as both a science and an art. Because of this gift “of thinking outside of the box” we are better physicians, better nurses, better social workers, better child life therapists, better physical therapists, better art therapists, better technologists, and better advocates for all of our patients.
Mattie has privileged us with his genuine smile, his unlimited energy, his motivational strength, his unshakeable focus, and his endless, endless, endless courage.
He has inspired us all to come together today, to unite in his uniqueness. Somewhere, sometime in the last 7 years Mattie gave each of us a part of himself and today, as we reunite and share those gifts he is whole.
Shortly after Mattie passed away, I wrote Vicki and Peter. In my letter I said, Our collective loss is a vast chasm.
But our collective love for Mattie is enough to fill that chasm, to overflow that chasm, to spill into rivers of goodness, to irrigate fields empty of purpose and the harvest of this devotion we have for your son and for you will bring forth something so immense and so wonderful beyond which we can imagine.
This will happen.
Of this, I am certain.
It will be one of Mattie’s greatest gifts.
I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "I walked through the store this week and saw all the costumes and candy for Halloween. All I could think about was Mattie in his flight suit, then Mattie as a mummy and how he ran his little "business" selling Halloween candy he had collected. I know Mattie only through you and yet, so much of what he did this past year and a half now permeates my views of almost everything having to do with children. I can not begin to imagine how difficult it is for you to make it each day. I do want to tell you I thought the video was absolutely amazing. From "Baby of Mine" to "Dancing Queen," the music matched the pictures well. I am glad you have it and that you have already rewatched it. I think that with time your memories of Mattie and his trauma filled last year will fade some and the beauty of his life will come into better focus. Today I wish you some time to remember the joy that Mattie brought into your lives."
The second message is from Mattie's oncologist. Dr. Kristen Snyder wrote, "I've made it through a week's worth of the blog tonight. Patrick is out with his lab. One of his students was accepted to medical school. Life goes on all around us and yet, somehow, a part of me remains stuck. I can not imagine the part of you that is stuck right now. But I want you to know that I think there are many of us stuck in this moment...in a Mattie Moment. I think too, it is important for you to appreciate the awe of this situation. As I read the blog, I am struck by the number of times Mattie is referred to as a gift. Emails from friends, family, former students, coworkers who mention a gift that Mattie gave them. A gift they find themselves reflecting on each day. It is really incredible. But of course, coming from Mattie...would one expect anything less than incredible? I think not. Your son continues to reach out...and to give. Thank you.I just wanted to let you know that I am thinking of you always. And that always...a part of me is stuck in a Mattie moment. I'm excited to get together and hear about the foundation. It will be an unbelievable success! I have no doubts!"
The final message is from a friend of my sister-in-law's, who I have had the wonderful opportunity to get to know and meet this year. Lesley wrote, "Whenever I open the blog, I take a moment and look at a couple of pictures of Mattie from when he was healthy. Last summer when Lisa went to visit you, I was feeding her cat and I noticed a picture of Mattie on her refrigerator and it was a "healthy" picture where his sweet face was a wonderful focal point. Since I never met your amazing little boy, I only have certain images of him in my mind both the still moments of him being ill and healthy. In all of the pictures, his adorable little cheeks are highlighted by a smile that is so fantastic that it could only come from a place of pure happiness. No matter how sick he was, his smile was radiant because of how you comforted him and made him feel safe. I can not image the images that you have in your mind, because they are not still shots but active moments of pain. In his illness, you created of space where he could smile....I hope you can find comfort in that special gift you gave him. In his healthy times, you clearly offered him so many wonderful moments to explore and embrace life. You did not waste a day of being with him, and you are teaching others about the precious gift of time. As you know, people are waiting to see how they can support the foundation...you are not alone and it will make a difference."