Saturday, October 3, 2009

Saturday, October 3, 2009



Today's photo features Mattie and Peter standing behind a NASA space suit. This photo was taken at the Wright Memorial (a place that marks the first flight in the USA) in the Outer Banks, during Mattie's first trip to the beach!



Poem of the day (Thanks Charlie!):



Unforgotten Dreams by Peggy Kocisin


Unfulfilled dreams lie forgotten, Broken, crushed by circumstances
That heedlessly, carelessly,
Shattered my life and my heart.
How I wish I could still
The wistful yearning
For those unrealized dreams,
The promises I made to myself
That once held the gleam and Sparkle of expectation
And glistened So hopefully in the sunlight.
Somehow it just does not seem fair
That they now lie scattered,
Cruelly torn Into a thousand pieces,.
How sad it is to know
That any effort to recapture
And reassemble them
Would be futile.
I must dream new dreams,
Make new promises,
See new visions,
Cherish new hopes.
But, somehow, they are not
As sweet as the old ones.

I began my morning by playing with Ann’s youngest daughter, Abigail. Abigail and Mattie went to the same preschool and were also in the same kindergarten class at SSSAS. Throughout the course of this year, Abigail had become a true and loyal friend of Mattie’s, even during times when he was shutting down and was distant and remote. In fact, watching Mattie interacting with his healthy friends was a sight to observe. Sure there were difficult moments, but for the most part, with his closest friends, the bond transcended the disease. That was a very empowering lesson to learn, and certainly a powerful force to witness and appreciate. I have to admit I learned so many things from Mattie this year, things I wish I were still naïve about. Nonetheless, cancer has a way of stripping you bare, and you can either build yourself up from it, or it consumes and eats away at every part of you. I am hoping to strive for the former, but the verdict is still out.

Abigail introduced me to a game called, Sims. It is an electronic game, and basically you have a character that walks around a factitious town and creates and designs buildings. In the midst of designing, you can also allow your character to changes clothes, pick up objects, and interact with other characters in the town. I can imagine playing such a game with Mattie, and I know QUITE well if I had ever played it with him, the focus of our conversation would have been difficult. For Mattie, he would have been intently focused upon the building aspect of the game. Abigail was to a certain extent, however, she and I had some funny dialogues about the clothing options for her character. She made the observation that people should select clothes based upon whom they are planning on visiting as well as the context of the interaction. I thought that was right on target, and we also talked about the colors you select to wear can say a lot about your feelings for the day. It was a conversation that frankly I could only see happening between one girl to another. Which made me pause and appreciate some of the wonderful and natural differences between playing with girls versus boys. Sure there is something to be said about nurturing a child’s interest, but I must confess we cannot negate the simple fact of nature.

I felt that I accomplished a lot today. I finished all four-heirloom photo albums and Peter and I sat down and proofed them before ordering them. I also crafted the program for the reception and celebration of life ceremony. So I feel as if progress is being made, but of course, guess what I still have yet to do? If you guessed the eulogy, give yourself 10 points!

It is funny, today, while visiting Mary and Sully, I saw some residents at the assisted living facility watching the movie, Nanny Mcphee. As I was passing the lounge with the TV, some thing stopped me in my tracks. This was a movie that Mattie and I watched together in the PICU not too long ago. It was a movie that captured Mattie’s attention, and it gave us a moment together to forget our troubles and enjoy our time together next to each other. It is those close moments together on the couch or lying next to each other that I greatly miss. It is ironic that for many parents, they can’t wait until their children are tucked into their beds at night, so they have a moment to catch up on their day. I can say this freely since I felt this way many a night when Mattie was healthy. However, how I would long for those days when Mattie was around, where I could snuggle up against him, or share a tender moment on the couch. I guess my message tonight is don’t take those precious moments for granted because children grow up so quickly, or in my case do not get the chance to grow up at all. I can assure you when you can’t have these special times together, it is not only heartbreaking, but it leaves you lost, confused, and simply empty.

I would like to end tonight's posting with a message from my friend Charlie. Charlie wrote, "I saw this poem and was immediately struck by how it reflected some things you said in the blog about your hopes for Mattie which are now gone, as well as your efforts to go forward and figure out what your life will be like in the future. I can see how you have to be two people in one, one who looks fine and the other who is inside crying. You have to go on and do what needs to be done in spite of how you feel. I grieve with you for the loss of the dreams you had for Mattie and I hope you find a way to express what you feel so that you don’t have to wear the mask of life as normal, all the time. I also hope there comes a point where you can begin to build new dreams."

Friday, October 2, 2009

Friday, October 2, 2009

Tonight's picture features Mattie and Peter standing on the Walkerville train. This train gives families a scenic tour of Maryland. Mattie was very excited to be on the train that day, he loved looking at the countryside filled with cows, and of course running from one train car to the next. I won't forget this day, it was cold and blustery, and yet despite the weather, Mattie had this incredible excitement and energy that made the day seem brighter.


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 createIt with
stands 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!

As I continue to work on photo albums today, I find I am reliving seven years of Mattie’s life. In the process, I can vividly remember when each photo was taken and the circumstances around the story captured digitally. My life with Mattie has been permanently etched into my brain, and each day I replay the pictures and the sounds that used to be a part of my world. In addition, to pictures, as you know I am trying to figure out just what to say at the funeral mass. Typically I am NOT at a loss for words, but when you give me a time constraint of five minutes, I have issues! I want to thank many of you for writing to me and telling me just to speak from the heart, as I do each night on the blog. You too admit that it is almost impossible to capture Mattie in just five minutes, and that I have nothing to prove at this point. I appreciate you saying that, but in my mind, I will always have something to prove when it comes to Mattie. I guess what I am trying to prove now, is different from my mission before when he was alive. Now the mission is to keep his memory alive, to educate others about Osteosarcoma, and though for some Mattie may become a distant and pleasant memory, for me, he will always be forever present. Grieving is definitely about remembering, NEVER forgetting, and it is my mission not to forget, and not to let any of you forget either. Fortunately I feel as if Mattie’s story has impacted a significant number of people, who I feel will join me in this cause and mission. We are now on the mission of remembrance, and I hope you will be brave enough to join me on this quest!

While I am doing these things, and visiting Mary and Sully, many of you are probably asking what is Peter doing today? Let me tell you about his day. Peter started his day off by dropping off a Mac computer to SSSAS (Mattie’s school). Peter met up with Mary, Mattie’s technology teacher, to share some audio files that Mattie recorded one night about a month ago. Night was a relative term for Mattie it was more like 1am! Mattie made up a song about how much he loved me (his Una Moon), and I am SO grateful that Mattie wanted to record this on the Mac computer. So Mary is downloading this audio file and she will include a short clip of it during the slide show. That little song means a great deal to me, and it captures the love we truly had and have for each other. While Peter was dropping off the computer, he met up with several other SSSAS staff members and parents. In addition, Peter could see kids outside at recess playing. Being flooded with all these reminders, in the location where Mattie used to play, was overwhelming for Peter, and he knew he had to remove himself from the school immediately. I can only imagine how he felt, which is why I refuse to even entertain the notion of visiting the campus. It is very hard to physically see children. They serve as a constant reminder of our loss and what we no longer have in our life. In addition, you must remember that we lost Mattie in a very painful and heartbreaking way, these memories still remain in my head. The last five hours of his life has become a part of my thinking, his death wasn’t peaceful, it was harrowing to watch, and I can assure you such visions could cause PTSD symptoms in even the strongest of souls.

If this wasn’t enough for Peter today, he then went to the funeral home to claim Mattie’s ashes. So from my perspective he had a very rough day, and I am happy that Ann suggested he go outside to play baseball with her son and her son’s friend. Fresh air, and a physical diversion are excellent forms of medicine to help combat this deep sadness and pervasive sense of loss. Peter and I have remained at Ann’s house this week. We are both going through a very difficult time, and somehow supporting each other through these times seems to be working for us. I consider myself fortunate that Peter and I have this support, that cancer bonded Ann with us over the past year, and together, we can be honest with each other about our thoughts and feelings.

One of the tasks Peter and I have to do is go through all the cardboard box creations of Mattie’s that are in a closet in Ann’s basement. She has over 15 of these large structures. Some of which I want to put on display at the reception. Nonetheless, I am having trouble getting myself to the closet to look at these items. I know I have to, but it is hard. Each box has a story, each box was a form of therapy for Mattie, each box was a vision he brought to life, and each box attracted on lookers and admirers of Mattie’s in the hospital. These are NO ordinary boxes, and this was NO ordinary seven year old! It is my hope you enjoy seeing these boxes, I believe it would have given Mattie a great deal of pleasure to hear your reactions to them!

I would like to end tonight's posting with two messages. The first message is from my cousin, Rosalinda. Rosalinda wrote, "I want to share something with you that has happened to me regarding Mattie. I always think about Mattie, read the blog daily, and was thinking about him while I was driving to work the other day. It was a beautiful sunny morning while driving down the Palisade Interstate Highway at 7:30 A.M. not a cloud in the sky, a drop of water hit my windshield (ONE DROP) just at the time Mattie came into my mind. STRANGE! The first thing I thought of it must have been a bird overhead, no.... no trees, no overpass....nothing but blue sky and the sun! Just one drop that hit my windshield. I think Mattie is telling us he likes the idea that we are thinking about him and telling us he is OK."

The second message is from Jey, Mattie's favorite CT tech and "big brother." Jey wrote, I am writing you this morning to let you know that you and Peter are being thought of and prayed for all in one motion. I have read the blog the past few days and have been truly amazed at what has been taken place with the car seat in your car to Peter's bracelet while sitting at the table and I must admit though both of these are very odd occurences. I think it's best that we look at how Mattie interacted with everyone he cared for meaning, at some point we all got a joke pulled on us but he always let us know that he was thinking about us in his own way even if it was him saying "Can I just be left along for 5 min or Can I just have 10 min to rest?" Mattie always spoke his mind and up until the pain started getting really bad he tried to speak his mind with care but
most importantly he wanted you and Peter to know that he was okay and in my heart this is what he is doing now, just wanting you and Peter to know that he is okay. I have done alot of thinking about what we talked about as far as me leaving Georgetown University Hospital
and you letting me know that it would be a not so good idea due to the fact that other kids will need someone they can trust, but in your words I think it was " Think about all the other Mattie's you could help" and honestly that has stuck in my head ever since you said so. With that being said I spoke with Linda yesterday and asked her how I could go about being a Child Life Specialist and working along side her in helping the kids and parents here in the hospital cope just a little with the horror that they are facing so she told me she would get me all the information that she could find for me so I may not have to leave after all. And that would be a good thing because I feel like I owe my little brother to be here to help any child who comes threw these doors and I believe in my heart that this is what Mattie would want me to do instead of anything else. So I wanted to share this with you and Peter because if it had not been for you raising such a awesome child I would not have known the joy of helping another child outside of my own, so I thank you for allowing me to be a part of your lives and doing what I was asked to do with being who I am to Mattie his big brother for the rest of my life."

Thursday, October 1, 2009

In this picture, Mattie is about a year old, and visiting the Reston Petting Zoo. This was one of his favorite places to go. He always loved animals, especially feeding bottles to the goats!

Poem of the day (Thanks Charlie!): Loss by Beth Lorber

I am here among friends smiling at their humor

And making plans for tomorrow.

But there is another person,

lying curled up in the corner

Crying out in unbelievable pain.

That too, is me.

I am doing my household chores,

And the routine is familiar and satisfying.

A gesture toward a need for living.

But there is another person, lying in bed,

Willing her mind a blank, not wanting to think or be....

That too, is me.I look at a lovely spring day.

A view of a world of growth and change.

A world only God could make.

But that other person stares through tears,

With unseeing eyes, knowing there is no God.

That too, is me.I am surrounded by my family,

A gathering of love and joy and tenderness

Of cherished moments and warm hugs.

But another person is there,

whose arms and heartAche for the one she can never hold and comfort.

That too, is me.Very slowly,

I am learning there is room

For joy and fun and cherished moments with friends.

In this hurry up world, with no space or patience

For grieving, there may always be two of me,

And I am doing the best I can for both.

That too, is me.

Peter and I had the opportunity to visit with Leslie Williams and Larry Jenney this morning. Leslie and Larry were Mattie’s kindergarten teachers. They came to share their condolences and to also chat with us about their memories of Mattie. As Leslie was reflecting on Mattie, I realized one thing immediately; Mattie was a lot like me. Not that I did not know this already, but it was interesting to hear about how he presented himself socially in the classroom. His teachers told me that sometimes during lunch they would give the children a free seating option, in which the children could select which table and with whom they wanted to sit with. Mattie had a hard time making such a decision. I got the gist of this quickly when they were relaying the story to me. The lack of structure of having to find a seat wasn’t the problem, instead it was the simple fact that if he selected to sit with one of his friends, this could potentially hurt the feelings of another friend. I think this example speaks volumes about the type of person and friend Mattie was. He was a very loyal buddy, and a fierce protector of those he loved. I have always believed that children learn from their role models, and I am touched that Mattie observed my level of advocacy for him and others over the years. Being an advocate for others is a quality I feel is tantamount in life, and it gives me great joy to hear that in Mattie’s short 7 years, he absorbed, embraced, and implemented this skill. We enjoyed Leslie and Larry’s visit, and appreciate the time they took out of their school day to spend time with us. Thank you Leslie for the delicious bread!

I spent some time working on photo albums today. It is ironic, we live in the world of technology, so much so, that in Mattie’s seven years, I rarely assembled a photo album. All my albums were electronic. However, I would love to share photos at the reception, and therefore, am working hard at sorting, categorizing, and assembling photo books. This is not an easy task by any stretch of the imagination.

I had the opportunity to have lunch today with Resurrection Children’s Center’s (RCC) Director, Kim. RCC was Mattie’s preschool. Kim and I had a delightful conversation at lunch and we reflected upon Mattie, how we found RCC, and what a great fit the school was for our family and needs. Mattie thrived at RCC and his years there maybe some of the happiest ones in his life. Since RCC is a co-op school, I had lots of opportunities to be in the classroom and to get to know the teachers and the wonderful families who comprise this community. I tried to convey to Kim the level of loneliness I now feel from losing Mattie. I could be in a room with 100 people, but the isolation comes from within. Thank you Kim for chatting, for the support, and for a lovely lunch!

As we sit and try to write some sort of eulogy to deliver at the church, I find that I am absolutely stuck in thought. Clearly I write everyday on the blog, but there is something very intimidating about writing this eulogy. We want it to reflect the beauty of Mattie, his life, spirit, energy, and passion. How do you convey all of this in five minutes or less? How do you condense 7 years of his life, including his battle with cancer, in that time frame? I am not sure, but I will see if we are up to that challenge. One thing I know for certain and that is, Mattie gave us strength and courage under the worst of circumstances, and I am hoping we can pull from his energy within us and write something that is indeed reflective of our love for Mattie. Wish us luck.

Tonight, as I sit in the assisted living facility visiting Mary and Sully, I find Sully has degraded even further today. His heart is beating faster and today is the first day he needs oxygen. Ann and I sometimes sit and reflect on how both of these deaths happen back to back for us, and of course there is no answer to this, other than, there are many things in life that are totally out of our control. Tanja came by as well, and we had an opportunity to chat and visit. It is still hard to interact with the real world, but as I slowly allow certain people back into my life, I am hoping this will help how I am feeling, but part of me truly believes this internal feeling may never go away. It is a feeling of complete and utter emptiness. As Charlie’s poem in tonight’s posting mentions, it is as if I am living two lives, and it is true. I have an external life in which people see a somewhat together and well functioning person and then I have a whole other inner world going on, a world, which isn’t as pleasant, happy, or satisfying.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am glad to hear that the plans for the services are coming together and that as usual you have found the right people to handle the job. I am also glad to hear that the gatekeeper at the church now understands your needs and is willing to listen. Hopefully that will carry over for the next time someone is in need. I read what your sister in law, Lisa, wrote about how we "need" a tragedy in our lives to appreciate what we have but that giving up Mattie for that cause isn't okay.I think as humans we have a need to make sense of things, even senseless events like untimely death or some horrific situation. I am not sure we can. But what we can do is try to avert the next time, consciously use it to make a change in our lives for the good, or work toward Tikkun Olam, the healing of the world, in the person's honor. If what you and Peter plan to do with your foundation saves one child what Mattie went through that is a major event. In Jewish tradition, charity is so important because to save one life is seen as saving the world. May each of us today and every day we can, reach out a hand in kindness to someone in Mattie's honor."

The second message is from my mom. My mom wrote, "From the infinity of time and space, Mattie's spirit is now free to proclaim his love for you without any earthly limits. No longer restricted by the physical laws that govern us, he improvises with new angelic delight. So is it any wonder that within three weeks of his death, he found a unique way of getting your attention? Certainly there is nothing conventional about what happened, but this is Mattie we're talking about, and conventional thinking never limited him in the real world so why should we expect things to be different now! It would be just like Mattie to want his first "communication" with you to take you by surprise forcing "the little gray cells" of your mind, as Poirot might say, to become activated and ask the question," How come the front passenger seat of my car was found inexplicably in the down position,when I left it in the up position and Peter says he has not touched it?"

It is a mystery with no immediate earthly explanation if we restrict ourselves to the use of our five senses and scrupulously look for the "scientific" explanation. An alternative approach might be to allow our minds to soar beyond the restrictions imposed upon us by the material world and "see" the facts in a spiritual light assisted by our sixth sense to guide our thinking "outside the box." Taking this advice myself and using my little gray cells, here is an interpretation of the "facts" as I "see" them and I will let you conclude what you will after you have examined them for yourself.

Fact 1: This event took place in your car. Mattie loved cars, especially yours, and if he chose to communicate with you as a spirit, wouldn't it happen in your car?

Fact 2: The front passenger seat of your car was found in the down position, the position that you used only when Mattie was in the car so that he could extend his leg. Therefore, a sign from Mattie!

Fact 3: There would be no other reason for ever putting it in that position again after Mattie died.

Fact 4: No one claims or remembers putting the front seat down after Mattie died. Daddy and I drove the car after he died and the seat was in its upright position before you began driving it again.

Fact 5: Mattie had awesome will power in life and when he was alive made things "happen" that were surprising and unexpected. Mattie's will power has made the transition to the other side in tact with his new angelic spirit.

I acknowledge that it takes a leap of faith to accept my logic. However, I remember that all year long, I wished for a Mattie Miracle, Although this is not the miracle I hoped for, I do believe that one did happen in your car!

Wednesday, September 30, 2009

Wednesday, September 30, 2009

This picture features Mattie's favorite form of transportation. Riding on Daddy's back. Mattie is about a year old here and loved to go on walks with us. Prior to the back pack, it was impossible to walk around with Mattie. He disliked how his stroller and his baby carrier confined him! Once he found the backpack he was in love with it. Peter could go just about anywhere with Mattie (food shopping, crowded malls, climbs to the top of lighthouses), so long as Mattie was in the backpack and on top of the world.

Reflection of the day (Thanks Charlie!): Death is not the enemy by Joshua Loeb Liebman

I often feel that death is not the enemy of life, but its friend; for it is the knowledge that our years are limited which makes them so precious. It is the truth that time is but lent to us which makes us, at our best, look upon our years as a trust handed into our temporary keeping. We are like children privileged to spend a day in a great park, a park filled with many gardens and playgrounds, and azure-tinted lakes and boats sailing upon tranquil waves. True, the day allotted to each of us is not the same in length, in light, in beauty. Some children of earth are privileged to spend a long and sun lit day in the garden of the earth. For others, the day is shorter, cloudier, and dusk descends more quickly as in a winter’s tale. But whether our life is a long summery day or a shorter wintry afternoon, we know that inevitably there are storms and squalls which overcast even the bluest heaven and there are sunlit rays which pierce the darkest autumn sky. The day we are privileged to spend in the great park of life is not the same for all human beings; but there is enough beauty and joy and gaiety in the hours, if we but treasure them. Then for each of us the moment comes when the great nurse, death, takes us by the hand and quietly says, “It is time to go home. Night is coming. It is your bedtime, child of earth. Come, you’re tired. Lie down at last in the quiet nursery of nature and sleep. Sleep well. The day is gone. Stars shine in the canopy of eternity.”

Peter and I had a busy day today. We had a meeting with our Mattie helpers at the Georgetown Visitation School, where Mattie’s reception will be held. We want to thank Olivia, Alison, and Tamra for giving up their morning and devoting their skills and energy to this event. These are extraordinary women, and I am honored to have them in our lives. I am even more in awe of their willingness to help us plan this special event, but then again, through Mattie, I found a beautiful, gentler, and kinder world of people than I had previously thought was even imaginable. Mattie has given me a gift of a lifetime…. the beauty of friends, friends who seem to drop things on a dime to help plan a funeral, to listen to us, and to respect our wishes. I don’t consider myself blessed at all, in fact there are days I feel absolutely cursed in life. However, having special women in my life does make me pause and realize despite my inner turmoil, there are aspects of good in the world that just can’t be ignored. After all, these women helped us for 13 months and in all reality they should be tired, but somehow they aren’t. They keep coming back, and their support is unrelenting! I am tired, I am shutting down at times, but I am together enough to realize the beauty of those around me. Seeing these women in action simply gives me hope!

We had a productive meeting at Visitation today. We did a walk through of the space and even met with the caterer, who is an ABSOLUTE delight. Susan Gage runs a big catering business in the Washington, DC area, but is compelled to help us because of Mattie’s story. I instantly bonded with Susan on the phone, and felt that she got the situation, and me, and I am happy that she has agreed to work with us following our budget. It is my hope that our attendees find the event as meaningful as we intend it to be!

After our reception site visit, we then had a meeting with Holy Trinity. The fellow we met with today had a change of tune from yesterday! I saw empathy and flexibility! Typically the church only allows two outside speakers at the funeral, we are having five. I feel it is important for all of you to hear from Mattie’s doctors, SSSAS and RCC directors, and Peter and I. I am happy that this will actually happen. If I accomplish nothing else, I am happy that I got my point across yesterday on the phone. When you are dealing with a family who lost a child, a great deal of understanding and compassion are needed. I don’t care to hear about your busy schedule and all the other things you are trying to juggle. To me they are inconsequential. Lose a child, lose your world, have no direction and purpose and then maybe you can have a half of a clue as to how we are feeling!

Peter and I went out to lunch today at Mattie’s favorite restaurant. The restaurant has a fishpond in front of it, and Mattie used to love to look and feed the fish! We stopped at the pond to reflect, and I even pointed out Mattie’s favorite fish! It is the biggest one in the pond! We talked about Mattie at lunch and we both had moments today when the reality of this horrible situation just hit us. These are not good moments, they are frightening moments, moments when the reality is so horrific that you ask how could all of this have happened and how on earth do you go on!? This is NOT a simple question to answer, and for the first time in my life I realize as a mental health professional that some problems are just NOT fixable. Some pain will last a lifetime, and sometimes you have to handle this pain in your own way and time.
Later today, I met with Mary, Mattie’s technology teacher. Mary is a delightful, bright, and compassionate person who we have gotten to know quite well over this year. Mary sat with me as we looked through baby videos and pictures, and we consider ourselves fortunate to have Mary creating this Mattie video for us. I am excited to see what Mary designs, and I can’t thank her enough for sharing once again her talents and expertise with my family. She is giving us a gift that will last a lifetime, and for this I am very grateful!

As I sit with Mary and Sully this evening, and as I watch Sully (Ann’s dad) slowly fade from his active and lively existence, it makes you pause and realize just how fragile life is. This is a concept I totally did not understand (or took for granted) before Mattie’s death. This is a concept I wish I still did not understand SO well. Nonetheless both Peter and I commented today that death and dying is something that no longer frightens us. We get it well. We have lived it, breathed it, have our child die in our arms and felt it in such a profound way, and because we have, I think it gives us a greater understanding of how family members feel as they go through this life altering process.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Unfortunately, what you and Peter experienced with the church is far too frequent with helping organizations.Somehow people move from trying to assist to "gatekeepers", putting themselves between the person seekingassistance and the organization. While some validation can be required, many make it much too difficult forperfectly valid requests to go through. I am glad to know that you did not allow this situation to stop you from settingup the ceremony the way you feel it should be. On the subject of the bracelet, once again, I agree that Mattie is sendinghis message to you; this time right in front of you so that you will not doubt and think, maybe I did that but forgot as waspossible with the car seat. It also seems to fit his sense of humor and personality to do something like that. I hope the planningfor the service goes smoothly and that you find some comfort in doing it."

The second message is from my sister in law, Lisa. Lisa wrote, "Just a quick note to let you know we're thinking of you. I feel like all I do is think, think, think about Mattie and you two, and wonder how you're doing, and worry. I've been composing a long email in my mind, usually when I'm shuttling from one practice to another, and don't know why I can't sit down and write it. You write every day, Vicki, and I can't manage to string a paragraph together. The long and the short is that somehow, somewhere in all of this, there has to be something. Something good? Don't know that I'd say that, but several people -- our priest during the sermon on Sunday, my neighbor with whom I go running, have spoken of balance and purpose: maybe something this horrible is necessary in order for people to wake up and feel and engage and commit. (Yet reading tonight's blog and the piece about the man at Holy Trinity makes me question that...) I think what both were saying reflects what you've undoubtedly heard all year -- sometimes people need tragedy in order to realize their role in making change in the world around them. That sure doesn't make you feel okay about giving Mattie up for that cause, I'd bet. Nor should you. All year I've struggled to identify the gifts with this horror. While some are clear - friendships defined and strengthened; being welcomed into the family of others who fight cancer; the awareness of community; the beauty in even the most miserable, stressful parenting moments; getting to know your amazing nurses, doctors, and support staff -- others elude me. But many times a day, I'm reminded of your most generous gift to all of us: appreciate every moment. Life turns on a dime, and we need to parent with love and recognition that these kids are truly miracles to us. Time and again throughout the year you admonished us to hug our kids - so, so true. It matters. As well, you've taught us that relentless advocacy matters. Reading the commentaries from doctors and nurses and all the others at Georgetown sheds light on just how much of an impact you three had -- and continue to have -- there. Every patient going forward thanks you for all the questions you asked, tests and policies you questioned, the refusal to leave Mattie alone at any point, your commitment to aggressive treatment, your Mama and Papa Bear protective instincts. Hopefully future families will benefit from enhanced communication, better coordination of treatment and medicines, and an acceptance that excellent patient care includes the whole patient - his disease AND the rest of him -- and his family."

Tuesday, September 29, 2009

Tuesday, September 29, 2009

On July 23, 2008, Mattie was diagnosed with Osteosarcoma. This was a solemn day for us, and even though it was the summer, Mattie wanted to decorate our deck as if it were Christmas time. So we transformed the deck instantly, and we enjoyed the lights for many months. This seems like a fitting picture, since today marks the three week anniversary of Mattie's death.

Prayer of the day (thanks Charlie!): We Remember Them by Rabbis Sylvan Kamens and Jack Riemer

At the rising of the sun and at its going down, We remember them. At the blowing of the wind and in the chill of winter, We remember them. At the opening of the buds and in the rebirth of spring, We remember them. At the shining of the sun and in the warmth of summer, We remember them. At the rustling of the leaves and in the beauty of autumn, We remember them. At the beginning of the year and at its end, We remember them. As long as we live, they too will live: For they are now a part of us, As we remember them. When we are weary and in need of strength, We remember them. When we are lost and sick at heart, We remember them. When we have joy we crave to share, We remember them. When we have decisions that are difficult to make, We remember them. When we have achievements that are based on theirs, We remember them. When we fulfill their dreams, and our own, We remember them. As long as we live, they too will live: For they are now a part of us, As we remember them.

Today was the kind of day that I ranged from being tired to weepy. I am so physically and emotionally drained from this year, and frankly I am not sure I will ever catch up or feel the same again. I woke up with many goals to accomplish today. I am blessed to be working with Mattie’s technology teacher, Mary, at SSSAS, as we create a video of Mattie’s life for the celebration of life ceremony. I have spent MANY days and hours searching through seven years of Mattie photos to share with you. I finally finished this project last night, and this morning spent some time with Peter picking out songs to place in the video. Each song in the video has some sort of significance to us as a family, and when you see the video and wonder about a song or a picture, don’t hesitate to ask me. In fact, sharing memories is a very healthy and productive thing. Not talking about Mattie makes me uncomfortable because though he may be gone from our world, he is very much a part of Peter and I and always will be.

In addition, to working on photos, I am also writing a statement, for the day of the event. There are times that writing about Mattie just sucks the life out of me. In fact as I was writing today, and reliving a story in Mattie’s life, a wave of deep sadness and loss came over me and therefore I cried. As I try to accept the reality of this profound loss, I find myself so lost and at times down. Nonetheless, I think people are used to seeing me together, and therefore when I look like I am falling apart, no one knows how to deal with me or respond. After all, what do you say when someone just lost their most priceless part of her life? You say nothing! You just are present, sit, and listen. That from my perspective is the greatest gift you can give someone who is grieving….your time and support. Sometimes words mean nothing, but holding a hand, a hug, or quietness together helps. Or at least this is what helps me.

This afternoon, I went to visit Mary and Sully, and also had the wonderful opportunity to see Margaret and Tanja. Living in Alexandria City with Ann for the past week, has opened up my world just a bit, because in DC, it is very easy for me to completely isolate myself. Thank you Margaret for the visit, the lovely fruit, and special desserts. Mary and I are both enjoying these treats! While Margaret was visiting, I made a phone call to the church where we are hosting Mattie’s funeral. We have been having a difficult time getting a hold of the person at the church who helps plan such events. Peter called him today, and had a challenging interaction on the phone. When Peter got off the phone, he called me and told me the story. I was in NO mood for any of this today, and decided to pick up the phone myself and deal with this fellow. I can be a nice person, but when I have reached my breaking point, watch out. I spent five minutes on the phone chewing this fellow out. I also felt the need to remind him that he is dealing with parents who have recently lost their 7-year-old son. Therefore, I expect some empathy and flexibility and if he couldn’t provide this to me, then I was finding another church that would. After my tirade, he changed his tune and we are meeting with him tomorrow afternoon. I am not sure why something that should be healing and peaceful, should be so complicated, stressful, and unsettling. When I have to explain to a member of a church how he should be behaving with a grieving family, I think we have a real problem. Don’t you think?!

I know some of my readers are fascinated by the stories I am reporting on the blog, especially the car seat story. Well Peter last night shared with me what happened to him yesterday. He was sitting at Ann’s kitchen table, and all of a sudden his “livestrong” bracelet that he has worn for months, just snapped. But it snapped in a very strange way. It wasn’t worn or torn, but the bracelet literally popped open between the words, Live and Strong. I have yet to really understand the meaning behind this, but I interpreted this as Mattie making a statement, that he has broken free, and now is indeed living Lance Armstrong’s motto, Live Strong!

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I know that making this service will be difficult but I believe that you will find the right people to make it happen as you wish it to; they will show up and you will know that he or she is the right one for the job. I too believe Mattie's spirit is around and trying to communicate with you; as Dr Snyder said, he is trying to tell you he misses you too but that he is no longer in pain. Perhaps it is as it might be before we were born, we think the womb is the whole world and that we are dying when we are born because no one comes back to tell us otherwise. Loving arms await us and welcome us into this world; perhaps our transition to the next world is the same, once again, we think it is over and loving arms await us once more."

The second message is from my mom. My mom wrote, "Time heals and heartaches like spirits disappear unseen into the night as the world inexorably turns and the future unfolds as it was written in the stars. Well meaning friends and family have reached out to comfort me with time honored advice passed on from one generation to the next to suggest how to deal with the pain caused by the death of a precious loved one like Mattie. The valiant struggle that Mattie waged to survive his battle with cancer is over, so goes the thinking, as should the time for personal grieving now that Mattie has found peace and is in a far better place. Grief, tears and pain, carried to an extreme, cast dark shadows over the precious memory of a life that though short lived can best be remembered by the feelings of happiness invoked in others touched by his creative passion for life and the charismatic magnetism of his personality. Like the sun, no heart remained untouched by the energy he radiated with his quick mind, competitive spirit and enterprising pursuit of game strategies that gave “playtime” a new meaning, not seen at GUH or anywhere else for that matter, ever before or since. It is not an overstatement to declare that he was a genuine original, marched to his own beat and had a uniqueness that might never be seen again! Jenny and Jessie, Art Therapists at GUH, encouraged Mattie’s artistry when he was a patient there. Recently they invited his buddies Jocelyn, Brandon and Maya to the Clinic to do an art project to honor Mattie. No doubt Mattie was looking down giving his approval and making his presence known by making subliminal suggestions to his friends to be sure to get his ideas included! His memory will always tug at our heartstrings long after his personal battle with cancer has become history, because his resilient spirit lives on in those he left behind and remains a testament to the impact his courage had on all of us. It is only natural for me to feel unrelenting sadness and pain that is bound to cloud the beautiful memories of happy times shared with Mattie, for etched in my soul, hauntingly and provocatively, is the image of Mattie facing death with dignity like a man , though only a small child. It tears me apart to think of how stalwart, brave-hearted and noble he was never to whine, demand sympathy or pity when going through the worst tortures of life though only an innocent child who deserved a better fate. Mattie redefined heroism and will always be remembered for his superhuman courage and strength even in the face of death."

Monday, September 28, 2009

Monday, September 28, 2009






Tonight's picture features Mattie on his first bicycle with training wheels. It was a very exciting day for him. At first he was cautious but once he got the hang of it, he was impossible to keep up with him. I think the smile on his face says it all!

Poem of the day (Thank you Kristi!):

Into My Heart by Garnett Ann Schultz

You tiptoed right into my heart; I knew I loved you from the start - That tiny hand, that baby face, A world of filigree and lace. Your smile, your voice, so sweet and dear, You filled my world with endless cheer. You own my heart, dear little one, You fill my world with endless fun. Togetherness, each hug, each kiss - 'Tis all of these I wouldn't miss. I love the time I tuck you in, The mornings when our days begin. Dear little boy, you'll always be The whole wide world and all to me. I'm thankfull for each hour we spend And all the happiness you lend. It matters not when we're apart, You'll always live within my heart.

Today in general is a reflective day for me. September 28, was my grandmother’s birthday. She would have been 92 years old today. My maternal grandmother, as many of you now know after reading the blog, was a vital person in my life. When her husband died of colon cancer, my parents had her move in with them. So as I was growing up, a multigenerational household seemed the norm from my perspective. It was only later in life that I realized how fortunate I was to have this family dynamic. My grandmother and I did a lot together and we were very close. She helped teach me how to cook, take care of a household, care for animals, become a caring and compassionate person, and the list goes on. I remember from an early age however being afraid that she would die one day, and I wouldn’t have her in my life. I was blessed in the sense that I had my grandmother through my college years, but her death was traumatic for my family, so much so, that I ended up having to research strokes and the stresses associated with family caregiving in graduate school. It always saddened me that my grandmother died before my wedding and also never met Mattie. It is my greatest hope though that my grandmother found Mattie in heaven and is now taking good care of him, like she always did with me.

After experiencing yesterday’s car seat incident, I somehow felt empowered to begin tackling funeral plans today, such as finding a caterer for the reception. This was something I just couldn’t come to grips with even a couple of days ago. But in true Mattie fashion, I felt the symbolism of the flat car seat was telling me, “don’t give up….just go on.” This is a line Mattie and I used on each other ALL the time. We actually picked it up from watching a Blues Clues episode together, and something about it just rang true to us. So whenever Mattie was down, or unsure of how he would address and handle a situation, I would always say, “don’t give up….just go on.” It was always very sweet however, when I would watch him empathize with me and use this same line on me. Not surprising since Mattie observed and ABSORBED everything.

I connected with a handful of caterers today, but the woman who caught my attention, not only called me back first thing this morning, but she had a lengthy conversation with me about Mattie. She told me her husband is a physician and her daughter is studying medicine at the George Washington University. So we had a lot in common, and she was first and foremost sympathetic and I felt she really wanted to plan the best possible event for us. I certainly have been through enough emotionally, and I need people in my life now who get this immediately. I felt as if Susan did today.

Later in the afternoon, I wound up picking up tea at Starbuck’s. While there, I noticed the lady behind the counter was staring at me. Not me exactly, but my necklace. She found it stunning and fascinating. Absolutely! I couldn’t agree more. I told her Mattie created it. I did not tell her he had cancer and died though, since I figured that would be a lot to throw at a person over a two second conversation. Nonetheless, I was very touched by her observations, and somehow I felt for just a moment today that the essence of Mattie was captured and remembered.

As for an update on Ann’s dad, he continues to decline, and last night for the first time he asked Ann to leave the room. This is not something he would normally ask, since he is quite devoted and connected to his daughter, but his insistence made me pause. I have always read that sometimes a person refuses to die with a loved one present in the room, so I thought maybe he was trying to indirectly tell her something. It is amazing how I have come to look for any sort of clues to help understand death and the dying process. Though I thought Sully was giving Ann a clue yesterday, clearly I was mistaken, since he is with us today. However, a part of me can’t wonder if he is preparing her. When Ann and I left the assisted living facility last night, we both observed a black cat crossing the road. I immediately blurted out, “this is not a good sign.” When I am tired, all sorts of things can come out of my mouth. However, I felt the same premonition when Super Red (Mattie’s fish) died in a 24-hour period. I took that as a sign that Mattie was going to die as well. Unfortunately I was right. Naturally my mind then made the connection between the black cat and Sully. I am sure my readers are really wondering about me, between the car seat story yesterday and the black cat story today. I know I wonder about myself too, since I was never a superstitious individual before Mattie’s death. I think experiencing death in such a profound way has made me more open and aware of things around me. Things I would have been closed off to before. In either case, even in Mattie’s death I am learning about life, myself, and our deep love and admiration for our son.

I want to close tonight's blog with two messages I received:

Dr. Kristen Snyder (Mattie's Oncologist) wrote, "It hardly seems believable to me that another Monday has come. As I read the blog this morning, I was struck by Vicki's story of her passenger car seat. I believe there are angels among us. And I think Mattie is one of them. Somehow, I feel like Mattie wants to talk to you. He wants you to know he is okay. But he must be missing you as well. How could he not be missing you? Maybe this was his way of saying "I'm thinking of you Mom and Dad. I just want you to know that." I would like to come by and talk. I know you are busy with Ann's parents and plans for Mattie's Celebration of Life...but I feel a strong desire to sit with you and listen or maybe just sit with you in general. As a physician, when we lose a patient, many times, we lose the connection to the families as well. Your connection, is one that I won't easily lose. But right now, understand this is your time and to see you would be purely on your terms. If it were something you had time for (both physical time and emotional time as well)... maybe I could help a little with folding papers or the like. Let me know what you think."

Charlie wrote, "It is natural that everything will remind you of Mattie and all you shared. He was a central part of your life; he gave direction to your hopes and dreams for the future. Acknowledge what you can and what you cannot feel now, and realize that each person's grieving is different. You see Peter as ahead of you on the path to dealing with Mattie's death; this is a long path and there may be points where you have to help him rather than the other way around. What you have taken on with Mattie's services is so difficultbut so necessary for you and for all of us who grieve as well. I believe Mattie found a way to reach you, to let you know his spirit lives on and I find much to celebrate in that. For today, where you can, lean on someone else for strength." Charlie also sent along a prayer, which I found helpful:

In Memory of a Child (adapted from the High Holy Days Prayer Book for Jewish Personnel in the Armed Services)I remember thee in this solemn hour, my beloved child. I remember the days, when I watched thy physical and mental unfolding, and fostered beautiful hopes for thy future. The Lord has taken thee from me, yet in my heart, the fond remembrance of thee can never die. The Lord has called thee into his presence, the Lord's love is my solace, my staff and my support. As a parent cares for his children so may the Lord look with compassion upon thee and grant thee eternal bliss. Amen.

Sunday, September 27, 2009

Sunday, September 27, 2009

Mattie was four years old in this picture. One of his favorite past times was to assemble wooden models and then paint them. Featured tonight is a dinosaur model that Mattie created and still sits in his room today.

Poem of the day (Thanks Charlie!):

My Brief Rainbow by Peggy Kociscin

Rainbows appear only on dreary, rainy days.
They beautify the world for a few brief moments.
Those moments, however, can be spectacular.
YOU were my brief rainbow.
You entered my life And stayed but a short while. Nevertheless, the memories of those moments
When you blessed us with laughter and delight, Joy and smiles, charm and beauty, Gaiety and happiness, Mischief and silliness, sunlight and moonbeams, Giggles and love (ad infinitum)...Made the deluge, the tears of pain and anger
Helplessness and fear, insanity and agony, Sadness and heartbreak, emptiness and loneliness, Bearable Rainbows, however brief, Make the world a brighter, lovelier place. How grateful I am that I had you, My brief rainbow.

On Saturday night, Ann’s children and their friends performed four plays for us in their basement. The children acted, developed scripts with moral messages, designed costumes, and even directed these plays. It was wonderful to see this creativity, to see their camaraderie, and to be included in this fun. We all laughed and for a moment our minds were taken off of our daily worries, and instead focused on what was being acted out in front of us. Which only verifies my point, that children have a way of capturing your attention, focus, and at times helping us see what is important in the world. Certainly not having Mattie in our lives, leads Peter and I to feel like we have lost our life’s compass. There are times that I feel a level of directionless come over me, and it is during these moments, that the feeling is so pervasive, it is hard not to feel frozen in time.

Last night, when I finished visiting with Ann’s parents, I got back into my car, and made a mental note of what I actually observed, but I couldn't process it at the time. In fact, my mind processed it the whole night long. It was that bizarre. When I got up this morning, I was simply perplexed. Why? Because what I noticed was the passenger seat was flat, or reclined straight back. I knew I hadn’t done this to the seat, but I decided to question Peter today to see if he had been in my car, transporting something, which could explain why the seat was in this position. But low and behold, Peter told me he hadn’t been in my car, and hadn’t touched the seat. So why was the seat like this? I have NO idea! The ironic thing is, the only time my passenger seat has been straight back like this was when I was transporting Mattie around after his limb salvaging surgery on his leg. Mattie would sit in the back seat, and prop his bandaged leg up on the seat in front of him. As I was questioning Peter this morning, what I began to realize is that there was NO earthly explanation for what I observed. The seat wasn’t broken, neither of us manipulated it, and I have to tell you that when I left the car earlier in the evening the seat was in the correct position. My only conclusion, as insane as it might sound, is that Mattie was telling me something. Mattie must have moved the seat! He knew that if it was placed in this fashion, that I would know immediately that it was a sign from him! In fact, I felt as if his presence was inside the car. I wasn’t sure if this notion excited me or completely upset me. I just kept telling Peter over and over again that Mattie was with us. I am sure I left Peter dumbfounded, because there was NO logical explanation for any of this. I have to confess when others have told me in the past about experiencing the presence of a deceased loved one I always listened, but wondered if this was the mind playing tricks on them. After all, if you wish for something hard enough, perhaps you can create this reality. Maybe?! But last night, I wasn’t wishing for anything, it just happened to me. So now all of this has given me great pause, and it makes me wonder what is Mattie trying to communicate to me? I felt compelled to check the rest of the car today, to see if any of his toys in the back seat were moved, or anything was out of place. I still haven’t removed his car seat or toys from my car. Somehow they seem to just belong there, and taking them out would disrupt the natural order of things. Any case feeling Mattie’s presence today brought the reality of the situation home for me. I wasn’t myself at all. I felt down, tired, lifeless at times, and little things seemed to set me off.

While I was with Ann this afternoon, she called Charlotte’s mom to set up a playdate for her daughter. As many of you know, Charlotte and Abigail (one of Ann’s daughters) were friends of Mattie’s. The conversation was innocent at best, but for me, based on how I was already feeling, it made me very upset. Upset not because these moms were talking with each other, but upset because Mattie was no longer part of this equation. There are no more playdates to plan. So the loss is on multiple levels. I am sad because Mattie is gone and can’t be a part of this world, he was robbed of his childhood and his life, and for me I don’t even know what world I am a part of.

As this week approaches, Peter and I have our work cut out for us as we begin to make concrete plans for Mattie’s funeral. Planning the funeral requires an inordinate amount of strength, and I think a part of me is trying to hold it together for this event, but after the funeral is over I am not sure what will happen or how I will feel after that point. Though I have a direction at the moment with helping Ann’s parents, I also realize this is a short-term solution to my MAJOR problem. A problem that I know will last a lifetime. I have lost other people in my life prior to Mattie, but the loss of a child is something so indescribable, incomprehensible, and so deeply, deeply painful. There are waves of sadness and depression that come over us, and yet I know all of this is so understandable and through time I hope I will be able to process or be open to process this somehow.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Tonight begins the most holy day of the Jewish calendar, Yom Kippur. On this holiday we pray for atonement of our sins and those of our community and the world. Too, at this time we recall all those we love and who have passed from this life into the next and I can tell you that Mattie will be foremost in my thoughts joining that of my immediate family who have gone before me. One of the important things in this holiday is to forgive others and to ask for forgiveness of any hurts we have inflicted on someone else. Sometimes the greatest hurt is the one we inflict on ourselves by expecting things we simply do not have the power to accomplish and it is important to forgive oneself as well. So today remember Mattie and see if you can take the first small step toward self forgiveness."