Friday, October 30, 2009

Friday, October 30, 2009


Tonight's picture features Mattie driving in "Speedy Red." Mattie was wearing oxygen cannula's in his nose, and his portable oxygen tank was sitting behind his seat. Nonetheless, this did not hold him back or slow him down. Mattie was a great driver... a natural! He just had a feeling for steering, making turns, and when to push down on the gas peddle. Speedy Red brought Mattie great joy and excitement, and I am so happy he had these moments before he died.

Poem of the day: Four Candles for You


The first candle represents our grief.
The pain of losing you is intense.
It reminds us of the depth of our love for you.
This second candle represents our courage.
To confront our sorrow,
To comfort each other,
To change our lives.
This third candle we light in your memory.
For the times we laughed,
The times we cried,
The times we were angry with each other,
The silly things you did,
The caring and joy you gave us.
This fourth candle we light for our love.
We light this candle that your light will always shine.
As we enter this holiday season and share this night of remembrance
with our family and friends.
We cherish the special place in our hearts
that will always be reserved for you.
We thank you for the gift
your living brought to each of us.
We love you.
We remember you.

Today was a busy day for me, filled with many social interactions. I had the wonderful opportunity to meet up with a fellow SSSAS mom, Diane. Many of you may remember meeting Diane and her son, Holden, at Mattie's walk. Holden is a sixth grader at Mattie's school and is now a cancer survivor. Diane and I e-mailed each other many times this year as both of our boys were undergoing intense treatments. It was nice to be able to connect with someone who experienced something quite similar to me, and we shared our cancer stories, fears, and a host of other thoughts with one another over lunch. I find it fascinating how cancer can unite people, and in a way it was like we were talking a common or shared language with each other.

After lunch I had the opportunity to spend some time with Ann and her family. I got to hear about the Halloween parade at her children's school. Mattie's school has a big parade for the kids, in which the children walk around the campus and display their costumes. Mattie did this during his kindergarten year, and absolutely loved it. I will never forget that day or the Halloween party that took place in his classroom. Life seemed so much simpler back then! I also went with Ann's children to pick out pumpkins today, which they carved tonight. It was lovely to see the excitement on their faces as they were picking out just the right pumpkin, and it reminded me of how Mattie would search and search until he found what he deemed the perfect pumpkin. I used to love pumpkins, but now I just feel totally indifferent to them and the holiday of Halloween. Most likely because without Mattie, this holiday seems non-existent to me. Later in the afternoon, I had the chance to have tea with Ann. We chatted about a bunch of different things, but at one point she told me that the kind of care I gave to Mattie was not only hard, but it was selfless, and amazing. These comments meant a lot to me, and I guess because of the simple fact that Mattie did die and he is no longer with me, that at times I do need this reassurance and positive feedback.

I also had a chance to see Mary, Ann's mom, this evening too, and I will get the chance to spend more time with her tomorrow, as we will be teaming up to give out Halloween candy at Ann's house. My joke with Mary is, that the two of us teaming up together could be a potentially scary experience for any trick or treater. I am joking naturally, but our combined feelings about the death of our sons makes for a very powerful force to be reckoned with.

This evening, Tamra, a fellow SSSAS mom, friend, and major Mattie supporter, invited me to the play, A Mid Summer Night's Dream at Mattie's school. It was a clever and witty performance, and I was very impressed with the teenagers who performed their roles with such humor, professionalism, and maturity. I appreciated Tamra's invitation, since I have always been a person who enjoys going to the theatre. I enjoyed her company and at the play I also had the opportunity to meet another young girl from Mattie's school who is battling cancer. It amazes me how many young people in our small community have been touched by cancer. Through helping Mattie, I have learned not to shy away from illness, but instead to embrace it, understand it, and to support those experiencing it.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "What you said about Mattie impacting everyone who knew him is true. You can certainly see that in these wonderful children like Campbell and Charlotte, who while they have had to deal with loss early in their lives in a very profound way, have become even more sensitive, thoughtful and loving as a result. I, like many others, have once again found myself reevaluating what am I doing with my life, my friends, my connections. For me this means stepping up and doing things I want to do but have been putting off for a better time. What if a better time doesn't come? Will these important things go undone and what effect will that have? I am thrilled that the foundation is on the way and I look forward to hearing about each milestone achieved. I remember sharing this with you at some earlier point but I will reflect on it again: in Judaism, when one does mitzvahs (good deeds) in someone's memory, they count twice, once for the person doing them and once for the person who died and can no longer do them him or herself. Reflect today on how many lovely deeds are done in Mattie's memory and may that give you some comfort."

Thursday, October 29, 2009

Thursday, October 29, 2009

Tonight's picture was taken in May of 2008, in Calvert Cliffs Park in Maryland. We took Mattie to this park twice, and both times he loved it. This park is very memorable, because in order to get to the water, you have to walk a 1 mile nature trail through some of the most beautiful woods and swamp areas. The type of plants, birds, beavers, and other creatures along the way makes the walking path exciting for people of all ages. At the end of the nature trail, you come to a beach. The beach is known for it sharks teeth. Mattie loved combing through the sand, getting in the water, and hunting down sharks teeth (which are black and triangular shaped). He always left his journey with a prize, and clearly in the picture you can see that Mattie was all business as he combed the beach. In fact, I think he even brought back a tooth or two for his kindergarten teacher to add to her science table of artifacts in the classroom.

Poem of the day: The Dash by Linda Ellis


I read of a man who stood to speak at the funeral of a friend
He referred to the dates on her tombstone from the beginning to the end.
He noted that first came the date of her birth and spoke of the following date with tears,
But he said what mattered most of all was the dash between those years.
For that dash represents all the time that she spent alive on earth...
And now only those who loved her know what that little line is worth.
For it matters not, how much we own; the cars .... the house... the cash.
What matters is how we live and love and how we spend our dash.
So think about this long and hard ... are there things you'd like to change?
For you never know how much time is left. (You could be at "dash mid-range")
If we could just slow down enough to consider what's true and real,
And always try to understand the way other people feel.
And be less quick to anger, and show appreciation more,
And love the people in our lives like we've never loved before.
If we treat each other with respect and more often wear a smile...
Remembering that this special dash might only last a little while.
So, when your eulogy's being read with your life's actions to rehash...
Would you be proud of the things they say about how you spend your dash??


Charlie sent me this poem today. I am familiar with this poem, but seeing it today made me stop and reflect. Mattie certainly lived his "dashes" and then some. However, I think Mattie's story has impacted all of our lives. Through him, it gives us great pause and forces us to stop and evaluate our "dashes." Or in other words, it makes us re-evaluate our own lives to determine how we want to spend our days on this earth. It would certainly be easy to turn inwards and focus on our own needs, but in all reality, the greatest gifts in life are, from my vantage point, obtained by truly caring for other human beings. Seeing Mattie die was one of the most painful experiences I will ever have in my life, but it is through this intense caregiving experience that I learned about true love, bravery, courage, and what gives ultimate meaning to one's life. After Mattie died, I desperately needed someone to devote my time, attention, and care to, and life presented me with the opportunity to help Ann with the caregiving of her dying dad. Certainly I could have walked away and turned inward. But something within me prevented me from doing this, and I am so happy I listened to my feelings, because I have found through intensely caring for Mattie and then Sully (Ann's dad), I found meaning, purpose, and clarity about life that I never had before. Through these two fellows, I feel as if my "dashes" and horizons have been expanded. Certainly in a painful way, but in a life altering and unforgettable way. It is ironic that I have learned more about life itself by helping two people die, than I gained through all my years of education or previous life experiences. So though Charlie sent me the poem as a reflection on Mattie's life, I couldn't help but also apply it to my own life. In some respects I have a feeling that Mattie's battle with cancer has inspired many of his blog readers to examine your "dashes" and to really evaluate what you want in your life and what matters.

I had the opportunity to meet with Christine (Campbell's mom) and Ellen (Charlotte's mom) today. Campbell and Charlotte were very close kindergarten friends of Mattie's. They were like the three amigos. We got together today to walk, get fresh air, and talk. The first time I met with them a couple of weeks back, I could bearly walk an hour. Today I walked for 90 minutes and then we had lunch together. However, toward the later part of the afternoon, I started to feel very fatigued and with that my migraine came on in full force. After talking with Christine and Ellen though, I realized just what a profound impact Mattie made on his friends' lives. His friends still think of him, talk about him, and as Halloween approaches miss not having him to share this fun holiday with them. I continue to be in awe of how Mattie's friends are processing his death, and they illustrate to me that children are indeed complex and they are deeply feeling and understand death on a much greater level than we give them credit for. Today, Christine said something to me that I will never forget. She said that losing Mattie's friendship for her son Campbell, has been very difficult. However, she wouldn't have it any other way, that she is so happy Mattie was a part of Campbell's life and would not trade that for anything, even if that meant Campbell now has to learn to grieve for Mattie. As we reflected on the times our boys had together, I started to cry, because we both came to the conclusion that this is not fair. This is not how life was supposed to be. Campbell and Mattie were a lot alike, and one of Campbell's main concerns now is how will Peter and I manage without Mattie because he surmises we are lonely. I found Campbell's insights very powerful, and I was touched that he could put himself in our shoes and see what a profound and traumatic loss this is for Peter and I.

I came home later today and rested. It seems to be the only thing I can do now when I am physically debilitated. As the evening wore on, I got it together and made dinner. Peter and I continued our new nightly routine of chatting while I am cooking and of course talked through dinner. We have a lot of talking time to make up for, after a year of turmoil. Tonight I cooked one of Mattie's favorite meals which is a ground chicken meatloaf recipe that I found years ago in the magazine Southern Living. Of course when I served it to Peter, I couldn't help but say, Mattie would have liked dinner tonight!

One piece of exciting news for today, yes I used the word EXCITING. Not a word I use often! The lawyers filed our Articles of incorporation today for the Mattie Miracle Cancer Foundation. Articles of incorporation is a legal document that is filed with the state to create a corporation. Nonprofit articles contain the organization’s basic information (name, registered agent, office address, etc.) and tax exemption information. We are in the process of filing paperwork with the IRS to get our tax ID number. So we are well on our way and stay tuned for more details.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I went looking for this because somehow today when I read the blog what struck me first were the dates at the top of the blog. Then when I read about the anniversary dates I knew it was time to find this poem. If there was ever a person who filled that dash between the dates it was Mattie. He gave us all so much to love, admire, emulate and to celebrate; he lived his short life to the fullest. If each of us who prayed for and thought about and were touched by Mattie could have given him a day or even an hour of our lives to add to his, he would have been with us for a very long time. Unfortunately, life is not set up that way, but, I believe that Mattie's memory will live on far beyond his time here in the hearts and minds of all he touched in one way or another. Take time today and try to find some comfort in how much Mattie managed to squeeze into that "dash."



The second message is from one of Mattie's preschool teachers at Resurrection Children's Center. Lana wrote, "This message will probably have many "random" thoughts, since I've begun this email many times! First, Mattie's service was beautiful and I have really enjoyed your posting the messages from the speakers. From the slide show and here on the blog I've also sooo enjoyed the photos....the baby pictures are just precious, but of course, 3-4 year old Mattie holds a special place in my heart. Each morning when I check the blog, my heart aches for you. I remember the disoriented feelings I had after the death of my father and grandfather, but they had both lived full lives...I can't fathom who I would be if I lost my child..it's just so un-natural. I have to share some of my feelings about the blog....with some more lessons on Hawaiian culture! Hawaiians compose "name chants" as a group or society for their rulers, and on a personal level for their loved ones. Frequently, this happens when a child is born, and may be added to later, as accomplishments occur. After death, Hawaiians feel that when you chant about someone, or "call" their name, they "live" again. I feel that the blog each day "calls" Mattie's name and he lives again... The Hawaiian song that I quoted long ago is one of my favorite songs, and the artist who made it famous also a favorite. In fact, Keali'i Reichel gave the mystery donation from Hawaii. The lyrics, "Dream, sleep gently in my heart..." are from the song "Lei Hali'a," which means "A Lei of fond Remembrance." Lei's are symbols of of an embrace, and an embrace of beautiful memories is a a vision I have of Mattie."

Wednesday, October 28, 2009

Wednesday, October 28, 2009

Tonight's picture features Mattie's last admission to the Lombardi Cancer Center and to the PICU. Mattie was very sick and in a great deal of pain. You will notice a PCA pump on the bed next to Mattie (it looks like a black rectangular bag). In this black bag was IV pain medication, but you can see from Mattie's face that he was miserable. Jenny (one of Mattie's art therapists) worked hard that day to try to take his mind off his pain by giving him a remote controlled dinosaur. This dinosaur remains in our living room, and it is one of the last toys Mattie actually played with.

Poem of the day: The House is Empty Now By Reverend William E. Gramley


The house is empty now, and so am I.
The silence is all around me and penetrates my every step.
If I listen to music, it pierces my soul and brings up tears on its way out.
I see his picture on several walls, giving a momentary glow to days gone by,
filling those rooms with love’s reflections, as I pass through.
I go out and return,
but the routine and the voices beyond this place
cannot come back with me.
I am stripped and searched at the door,
humbled as I lean upon the entrance way.
I may only take the emptiness in.
That doesn’t seem necessary,
since it abides here anyway.
The house is empty now, and so am I.


Some days for me are better than others. Today was a day that I just felt lost and with an inability to understand or even have interest for what the future may hold. That may sound very depressing and grim, but dealing with death and dying issues isn't pretty. Which explains why our society shies about from these complex and heart wrenching issues.

I begin my day, as I do most days, in Mattie's room. I close his curtains each night and open them each morning. Almost as if he were still in the room, accept of course that he isn't there. After I open up the curtains, I usually look around his room and I can't help but see the total chaos of toys and clothes that surround me. Under normal circumstances this disorganization would highly bother me. But I am attached to all of Mattie's things, and right now, they are exactly where they need to be. Each morning, besides looking around, I let Mattie know that I miss him and think of him always, as I can only hope he knows and feels.

My days without Mattie have little to no structure. Sure I could fill my days with things to do, but it wouldn't be the same. I have been robbed of the ability to raise Mattie, and this simple fact angers me and saddens me all at the same time.

As I was sitting down today, I reflected on the fact that on Monday, Ann's dad died three weeks ago, on Tuesday, Mattie died 7 weeks ago, and today was the two year anniversary of Ann's brother's death. This is a lot of loss to process and cope with, and I wanted to somehow acknowledge the death of Ann's brother today. So I went to her house and dropped off flowers, balloons for her children to release in remembrance of their uncle (since this is something I found deeply moving during Mattie celebration of life reception), and one of her brother's favorite pastries. It is hard to know exactly what to do on the anniversary of a loved one's death, but one thing became clear to me, doing something felt better than doing nothing. I feel as if this is one of many things Ann and I connect on, having experienced the untimely death of someone we deeply loved and cared about.

Later in the afternoon, I had the pleasure of doing laundry. Even the mundane task of doing laundry is no longer the same. In fact, without Mattie I have a lot less clothes to wash, and the sheer lack of volume always catches my attention immediately. But the true test for me is folding clothes. It is during the folding process that it is very evident that I have NO little person's clothes to fold, and this is just another example where his loss just hits me hard.

When Peter got home from work, we talked together while I cooked and we continued our conversation throughout dinner. We are making a concerted effort to reconnect, after many months in which we led shattered lives. I remind you that as Mattie became sicker, he did not want to hear any noise. Many times Peter and I landed up text messaging each other back and forth, in order to communicate. Clearly you can see the issues with this.

I would like to share the Mattie tribute that Linda (Mattie's childlife specialist) and Jenny (one of Mattie's art therapists) read at the Celebration of Life Ceremony. They wrote a poem about Mattie, that I feel is priceless and precious. It captures his spirit and his love for life.

===================================================
Linda and Jenny's Tribute to Matte


WE REMEMBER MATTIE

When we see a cardboard box
We remember Mattie and ALL of his amazing projects

When we hear the words “apparently” and “shocker”
We remember Mattie

When are at the beach and see seashells and sea glass
We remember Mattie—our little professor

When we see ANYTHING red
We remember Mattie

When people talk about cockroaches
We still cringe—but we also smile and remember Mattie

When we drive by Roosevelt Island
We remember Mattie

When someone bounces in their chair with excitement
We remember Mattie

When we cue up a Scooby Doo movie for another patient
We remember Mattie

When we clean brushes in the art sink
We remember Mattie—and his famous “Boat Races”

When we hear the names Sam, Harold, George, and Steve
We remember Mattie—and his unique limbs
When we’re channel surfing and pass by “Mamma Mia” on TV
We remember Mattie—our PT Dancing King

When we walk into room 9 and see his celestial wall stickers
We remember Mattie and his ability to breathe life into the hospital rooms

When we look up toward heaven and see his ceiling tiles
We remember Mattie

So long as we live, he too shall live, for he is a part of us.
We remember Mattie.
=============================================

I would like to end tonight's posting with three messages. The first message is from my friend, Charlie. Charlie wrote, "I am sorry that you are continuing to suffer with these horrible migraines and that they are making your exhaustion worse. I do think that you need the sleep/rest; although the studies show you can't really "make up" entirely for missed sleep, our bodies and minds demand additional rest once the crisis is over. If you look at replacing the time at even a quarter of the time that you spent without it, you need additional rest for at least three months, maybe four. I suggest you look at this time as replenishing your sleep bank account from an enormous deficit which will probably also go a long way toward helping your immune system recover. The other piece here is that emotions, particularly strong ones, also take their toll on your energy level. You do need to talk about Mattie and to share memories but those conversations come with strong emotions and that also saps your energy. For today, remember that all work, whether physical or emotional requires rest for recovery and that even the Almighty took a day off and give yourself the same gift."


The second message is from a fellow RCC mom and friend. Danelle wrote, "Thank you for posting everyone’s tributes from Mattie’s service. I wasn’t able to attend so I was grateful to be able to read what everyone had to say about Mattie. Today I was at Starbucks, and a friend from our neighborhood came up to me to tell me how sorry she was about Mattie, that she’d been meaning to tell me but hadn’t had a chance. So many people have been touched by Mattie (this particular woman went out of her way to lend me a table for the Mattie Walk). He is not a boy who can be forgotten. It seems that even people who never met him in person have found little places in their hearts for him."


The third message is from a fellow SSSAS mom and friend. Liza wrote, "The other night, just as we were getting ready to eat dinner, Tom (Liza's son) said that he had been thinking about some things, especially having to do with God. He had been mulling some thoughts over while in Chemistry. He had been working on a paper about the plague, had been talking with his friend, and he had been thinking about Natalie Richards (Katie's [Liza's daughter] classmate who has brain cancer) and Mattie. He just couldn't understand why God made all these bad things happen. "Why" he asked us, "Can you explain" he said. "So do you think God really has a plan" he exclaimed. Humph, it is interesting to me that a 15 year old boy thinks about these things. It led to a lengthy conversation among the three of us. So you see, my friend, Mattie and your family and others continue to have an impact on those of us around you."

Tuesday, October 27, 2009

Tuesday, October 27, 2009

Tonight's picture was taken in January 2009, on the top of the Empire State Building in NYC. We took Mattie to New York in January to begin the experimental treatment of MTP-PE at Sloan Kettering. We were very fortunate, there were NO lines to ride the elevators that day and Mattie was able to take the elevator to the highest floor, the 102nd floor. Mattie loved the views and was very excited to be up so high off the ground.

Poem of the day: My Memories by Jessica L. Gray

It seems as if yesterday
you held out your hand
for a walk in the park
a play in the sand
I know it was just last night
I tucked you in bed
saying our prayers
with a kiss on the head
Sometimes I wonder why you had to go
But the answer to this I already know
So much suffering just can't go on
I finally had realized what I knew all along
I had so much to say
I Love Yous to tell
I started to slip
and I almost fell
But I kept on moving
one day at a time
My memories kept going on and on
In my mind
The day you were born
Your first big boy bike
I know you put these there for me to keep in sight
I know you are with me
each hour and minute
I feel you around me
There seems to be no limit
So my darling son
I want you to know
I miss you and
Thank You for helping me let you go
I am so grateful that you have caring,
loving people around you.



I continue to be plagued with migraine headaches, and if you have never had a migraine, consider yourself lucky. Day in and day out of these intense headaches is overwhelming, and the fear I have is, will they ever go away? After all, I am on medication for them, and yet I am feeling no relief. But then again, the migraines are only symptomatic of a much larger and all encompassing problem which is having lived through 13 months of hell and the loss of Mattie.

I had the opportunity to have lunch today with Alison, our Team Mattie Fund Coordinator and our director of communications. It is very nice to be able to meet with Alison outside a hospital setting. We certainly spent many days together in the PICU playing with Mattie and Mattie always enjoyed Alison's great impression of Patrick from the Sponge Bob series. In all reality, Alison is quite good at doing different voice impressions, and when she and I teamed up to play with Mattie, Alison always played the goofy and humorous character, and I was always the more rigid, uptight character trying to keep her in line. Mattie seemed to get a kick out of our interactions and anything that was going to entertain him, only caused us to play more. In fact, one of the cardboard boxes that was on display during Mattie's celebration of life reception featured a cruise ship that he designed. I will never forget that cruise ship, because one afternoon he had Alison and I playing with it for hours. I showed it to Alison during the reception and she too was transported back in time. There are just some objects that Mattie created that hold so many memories for us. Peter and I are very grateful for Alison's involvement in Team Mattie this year, and in the midst of great sadness, we are so happy to have this connection and friendship with Alison.


After meeting with Alison, I headed home, and climbed into bed and slept for two hours. I find that leaving our home now for extended periods of time, wears me out, which only further compounds my headaches. How I went from a person who could work through the day and most of the night to care for Mattie, to now, only being able to function in two hour blocks of time is fascinating. It speaks to the toll that caregiving has on the body, mind, and the spirit.

Tonight, Peter and I had the opportunity to have dinner with Dr. Aziza Shad. Dr. Shad is the director of the pediatric Lombardi Cancer Center at Georgetown University Hospital. Dr. Shad was also the doctor on call during the week Mattie died. She did a phenomenal job helping Mattie die in a humane and comfortable way, despite the fact that for Peter and I the sight and sounds were horrific. I shall never forget the sound of Mattie's "death rattle." The sound that seemed to be coming from deep within his lungs as they filled up with fluid and were drowning him from the inside out. On my way to dinner tonight, I had to walk through the George Washington University campus (GWU). GWU is my alma mater and my employer, and yet I have been removed from this setting for over a year. Tonight was my first real attempt at walking through the campus, in order to get to the restaurant. As I was walking, I noticed all the students, they seemed so alive, energetic, and with purpose. All I could think of was at one time this is how I felt and perhaps looked, and now look at me. I am so different.

We had a lovely dinner with Dr. Shad. She is very easy to talk with, and what you quickly can surmise from her is that she is human first and fore most, and a doctor second. Which is most likely why her patients and their families love her. She isn't arrogant, has no pretenses, but is a competent and talented physician. I saw her handle some of the worst of circumstances, and she did it in a dignified, professional, and compassionate manner. Something I will never forget. We talked about so many things from cancer, families, vacations, and of course grief. Despite living through the worst thing life can throw at you, Peter and I feel very fortunate to have been connected by Dr. Bob to Georgetown University Hospital. This was the right match for Mattie and my family, and it is through this ordeal I had the opportunity to experience the beauty of the whole HEM/ONC care team.

On our way home tonight, Peter and I walked arm and arm in the rain. I told him for some reason this reminded me of our time together in college. Peter was always very gallant like that and despite my mood of sadness, I was able to step out of that for a minute, and remember those happier days we had together. For some reason that made me smile.

I received the message below from my friend, Charlie today. Charlie mentioned to me that she was happy that so many of our Mattie supporters are still there for us and supporting us now. This means a great deal to me and I do not take this for granted. I also consider myself fortunate to have an angel of hope. As many of you know I gave Ann this title early on in Mattie's battle with cancer. However, what some of you may not know is that Ann continues to serve as my angel of hope. She checks in with me many times in a day, and wants to make sure that Peter and I always feel included and needed. In fact, some of you have asked how we are spending Halloween without Mattie. If it were up to me, I probably would be in bed with the covers over my head, but Ann instead has invited us to her house where Peter will go trick or treating with her son and I will be with Mary, Ann's mom, giving out candy to those visiting her house. Not that the evening won't be hard for us, it most likely will no matter what we did, but not being alone through this means a great deal to me.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Often after a death, people stop calling and turn away, not because they don't care but because they are afraid of saying or doing the wrong thing. Then the person or family that is already feeling isolated by the death, feels abandoned on top of it. I am so glad this is not the way it is. It is good to read about your visits with those who knew Mattie and to read of how you shared stories with them. To anyone who is considering calling, writing or making an offer of a visit but is holding back out of fear, I offer this - say how much you care, share memories of Mattie and above all ofter the gift of listening without judgment. I hold you gently in my thoughts as always."

Monday, October 26, 2009

Monday, October 26, 2009

Tonight's picture features my assistant chef. Mattie was my helper and he especially loved when I made him homemade waffles. He would be my mixer and he patiently awaited while I added each ingredient (flour, eggs, baking powder, etc), to the bowl. Clearly I have resumed cooking now, but things are NOT the same in the kitchen without Mattie.

Poem of the day: Are You There? by Diane Robertson

Misty breeze wraps about my shoulders, thinly clad.
I shiver not, despite the coolness on my skin.
Comfort, I now feel.

Is it you my precious Angel?
Are you there? I cannot hear your quiet voice, But bird song fills the air
From high treetops to grassy marsh.
I wonder – is it you, Dear? Are you there?

The roses in your garden bloom large,
And varied in hue from crimson deep,
to barely pink.
I cup the velvet bud, its fragrance soothes a troubled mind.
This must be you, my little boy.

Are you there?Are you the fiery autumn maples,
Or the star-like flakes of snow?
Are you the sparkle in the water of the lake that we both loved,
Or, perhaps, the warmth I feel in the sand beneath my toes?

Though your quiet voice I cannot hear,
Nor can I see again your sparkling eyes,
Or feel your dainty hand laid gently on my own,
You are here.

For memory's book will never close –
Each lovely sound, or sight, or scent,
Another page from special times that we have shared.
Oh, yes! You are here child – everywhere!

I was invited to Joan Holden's home this morning. Joan is the head of Mattie's school, St. Stephen's and St. Agnes School. Joan was very kind, thoughtful, and generous with her time today. As I had tea with Joan, I had the good fortune of meeting her dog and to see her own children's Halloween artwork that she had on display. This is one of the beautiful things children give us, the gift of their love and creativity. Here is one of the times my pack rat mentality actually worked out well, because I kept most of Mattie's masterpieces over the years. I am so happy I did that.

St. Stephen's and St. Agnes has been very supportive of Mattie and my family this year, and I want to acknowledge, that from my perspective, a school is only as good as its administrators/teachers and the families who attend the school. St. Stephen's and St. Agnes attracts the best of both. Joan led by example this year. She was washing cars at Mattie's car wash fundraiser and allowed us to host a Mattie Miracle walk at the upper school campus, of which she fully participated in. Joan visited Mattie several times during his year long hospitalization, and she practically e-mailed or called Peter and I on a bi-weekly basis throughout the year. For this support, I am forever grateful.

Meeting with Joan today illustrated to me that the support for us did not end with Mattie's death. We spoke about so many things, but Joan wanted to make sure we knew what a great job we did with advocating and caring for Mattie. I may appear like a person who doesn't need much positive feedback, and for the most part (under normal circumstances) this may be true, but under times of great vulnerability, having someone say to me.... you did a great job, is very healing. Especially when our battle landed up with Mattie dying. Joan and I spoke about Mattie's blog and she encouraged me to write a book. I admit this is something I have thought a great deal about, as well as other shorter educational awareness pieces that could be downloaded from the Mattie Miracle Cancer Foundation website that would hopefully be helpful to the next family down the line. There was SO much I had to learn and if I can save another family a few steps in the process, then to me, I will feel a sense of accomplishment.

I know I have used this analogy before on the blog, but as I was talking to Joan today, I feel very confident in saying what Peter and I survived this year is similar to fighting in a war. We weren't in Iraq or Afghanistan, but a PICU. Nonetheless, aspects of these environments, and living with cancer, are just as toxic. We were sleep deprived for over a year, dealing with one medical bombshell after another, no privacy or control over what was happening to us or anything around us, isolation, and the list goes on. It is no wonder besides dealing with grief, that reintegrating back into society is almost impossible when you think about the toxic world we lived in for 13 months.

Later in the day, I had the opportunity to get together with Ann and Alison. The three of us helped to reorganize Mary's room in her assisted living facility. Mary was actually very pleased with her new arrangement today and now feels as if she has both a bedroom and a separate living space. It was nice to know we made her happy, and before I left, Mary told me that she hopes I live a long, happy, and healthy life. I told her that was very nice of her to say, but she quickly responded that I have paid my dues by losing Mattie, and that I should not be subjected to any more pain or heartache. I found her sentiments very touching and heartfelt. It is interesting to me how two women, Mary and myself, who are SO different in age, can actually have this mutual admiration for each other. But I think cancer and losing a son can do that to people.

When I got home this evening, I made dinner, and instead of doing this alone, I had Peter in the kitchen with me. We chatted throughout the entire cooking process as well as dinner, and we are working hard at trying to find and define our world now without Mattie in it.

I would like to share the Mattie tribute Joan Holden (Mattie's head of school) delivered at the funeral. Mattie was only a student at St. Stephen's and St. Agnes for one year, yet through his journey he clearly left a lasting impression on his community.

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Joan Ogilvy Holden's Tribute to Mattie

First let me say what an honor it is to be asked by Vicki and Peter to represent the St. Stephen’s & St. Agnes community this afternoon. Secondly, and I want to address this directly to Vicki and Peter, please know how much Mattie, who was bright, curious, creative and I must admit one of those Kindergarten students who just always seemed a step if not two, ahead of me, was loved by our school. From the moment we learned of his illness, St. Stephen’s & St. Agnes, as well as several other area communities went into action. As we did so, we all quickly learned the tremendous impact Mattie was making on his teachers, administrators and fellow students in the short time that he was with us. I am reminded of the time a colleague was introducing Mattie to our boys Athletic Director and head varsity football coach, Mr. David Holm. Not sure exactly the best way to introduce him, my colleague decided to introduce him as his friend Dave, Mattie looked up without a moment’s hesitation and very naturally said “Hi Dave” and put out his hand to shake. Mattie became an honorary member of our Saints football team. Mattie and Coach Holm formed a deep and meaningful relationship. This is an example of a very human moment. Mattie Brown showed us over and over again the beauty, the power, and depth of the human moment.

In addition, to being a school that honors great academic achievement, we also honor something just as important. We honor hope and faith. Everyone struggles with the questions that Mattie’s illness and death raise. I will not try to offer any easy answers. Instead what we are doing this afternoon is reminding ourselves that Mattie’s life had meaning and purpose. As an educator, I feel Mattie was a true teacher. He taught us courage, perseverance, resilience, humor and faith. I am convinced there is more love in the world today because of Mattie Brown. When Mattie became a member of our St. Stephen’s & St. Agnes School community, Mattie heard the phrase all of our students do. That he is a child of God. Mattie was and is a child of God. And as a child of God I feel confident in saying that Mattie is in God’s safe hands.

Our hope for Mattie is changed but it has not ended. Both his life and death will have meaning. There is an old Christian saying that goes like this “God has no hands but ours, no feet but ours, no words but ours.” This is how we learn to live in the midst of difficulty. We acknowledge the pain of the loss, yet we also remind ourselves that we need each other and that we are not alone. Our hope is found in the community. Our hope is found in those around us. Our hope is found in a God who loves us. Vicki and Peter, all of us in this room will continue to be here for you. Mattie Brown’s oh so treasured and short life taught our community how to be community. We often refer to our students as Saints. Mattie was a saint, is a saint and he will always be a saint. The warm and bright light of Mattie Brown is not extinguished, rather it is spread out, it is reflected in the beauty that surrounds us every day, or perhaps in a complicated Lego set, and it resides in each of us. This is what it means to be a child of God.


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I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I read the blog and your Mom's story of Mango Mouse definitely made me smile. I then spent several minutes trying to imagine what kind of car Mattie is driving around up there but came to the conclusion that nothing I could come up with compared to the wealth of Mattie's imagination and that now, fueled by new abilities we can only dream of, I am sure he will probably be on the welcoming committee driving new arrivals to their appointed places and taking new friends for a "spin" in his vehicle. As for anger with G-d for what happened, all I can say is that the Lord can certainly handle your anger and all the other feelings you have. In Judaism, we believe it is quite all right to be angry with G-d, to ask "why" and to challenge. What the rabbis tell us is not okay is to walk away and to become numb and unfeeling. I am not sure if that is for us or for the Lord, but either way, for mental and spiritual health, be angry, be free to feel, to cry, to challenge, to ask or whatever comes up. The supreme one can handle it and we need to do it. Today, give yourself permission to do whatever it is that you need to do."

Sunday, October 25, 2009

Sunday, October 25, 2009

This picture was taken on August 5. The day Mattie's cancer was diagnosed as having metastasized and therefore his case was terminal. Mattie and I spent some time between tests that day outside in the hospital rose garden (where I sat with him and told him the story about the day he was born, a story he loved hearing). That day, Mattie also stopped to take a picture by the Hospital's elephant statue. This elephant is maintained by the art therapy program at Georgetown's Lombardi Clinic, and if you look closely the elephant has ceramic tiles on it which were created by patients and Hospital employees. Mattie liked to visit this elephant, because one of his nurses, Kathleen, created a tile for the elephant (which is located right by Mattie's knee) that read, "I wish for a Mattie Miracle." If only such a miracle were actually possible. When I look at this picture I can't help but be perplexed, because Mattie looked so healthy and happy on the outside, and yet was SO sick on the inside.


Poem of the day: Letter to Mom by Joy Curnutt

Mom, please don’t feel guilty
It was just my time to go.
I see you are still feeling sad,
And the tears just seem to flow.
We all come to earth for our lifetime,
And for some it’s not many years
I don’t want you to keep crying
You are shedding so many tears.
I haven’t really left you
Even though it may seem so.
I have just gone to my heavenly home,
And I’m closer to you than you know.
Just believe that when you say my name
I’m standing next to you,
I know you long to see me,
But there’s nothing I can do.
But I’ll still send you messages
And hope you understand,
That when your time comes to “cross over,”
I’ll be there to take your hand.

Peter and I had the opportunity to attend Ann's church today. Ann had a special mass to honor the death of her father (October 5, 2009) and the death of her brother (October 28, 2007). It was a lovely service and it was very special because Ann's mother, Mary, was able to attend, along with several of her assisted living friends. It was a memorable outing for all of them, and Peter and I felt very honored to be included. The priest gave a homily and spoke about a whole host of things, but one of his main points that caught my attention, mainly because I felt as if he were speaking to me, was that God understands there are times when we turn our backs on him. The priest continued on by saying that God forgives all of us for these feelings, we just need to ask for forgiveness. I wouldn't say per se that I have turned my back on God, but I do know that I am angry at him. I grew up believing that God's will wasn't necessarily challenged and that even under the worst of times, with God, all things are possible. You just have to have faith. All the things I have always believed in however have been challenged and turned upside down with Mattie's illness and death. There are times that I feel guilty for having such negative spiritual feelings, and perhaps in time I can come to peace with them and with God. But I am not there yet. Toward the end of today's service, the choir sang Amazing Grace. It took every ounce of strength I had to keep in together while this was being sung. Those of you who attended Mattie's mass may have seen that I did not select Amazing Grace to be played at the funeral. Why? Because this hymn meant a lot to Mattie and I. Mattie was a very colicky baby, and one night out of sheer desperation, while rocking with him for hours, I started to hum, Amazing Grace. Mind you I tried everything else plausible to calm him down, but when he heard Amazing Grace, he quieted down instantly. It was from that day forward that I learned the power of Amazing Grace, and even when Mattie was very sick, I would sometimes sing this to him. The hymn had the same effect on him whether he was a baby or was seven years old. So needless to say, hearing this hymn today, transported me back in time instantly... to the moment when Mattie was a baby, and my main worry and concern was colic.

In the midst of the mass today, Peter tapped me on the shoulder and pointed toward the church's door. When I looked over I saw Melba. Melba was one of Mattie's wonderful HEM/ONC nurses. We were both stunned to see Melba, but we later learned that this was her parish and she also is an usher at the church. Melba introduced Peter and I to her husband and her two sons, and for Peter and I it is so nice to be able to see Mattie's nurses again. These women will always be special to us and we have a special place in our hearts for them. Yes I realize the services these provided us were part of their job description, however, the love, compassion, competency, and unending support they gave us went beyond a job description. These things clearly came from their hearts.

Peter and I had the opportunity to have brunch with Ann and her family and later in the afternoon, we got to see the wonderful video tape of the services Ann had for her father in Boston (Thanks Tanja you did a great job! Mary and I felt like we were actually there!). However, as the afternoon wore on, I could tell I was dwindling. Even on migraine medication I still feel horrible, and I wonder when this pain will ease up, because the intensity of it is debilitating. I am very aware that I carry my stress, pain, and grief internally, and it is my hope that in time it will come out, so that I physically do not continue to feel an inability to function.

I would like to share with you a message my mom sent to me today. My mom created the character, Mango Mouse. This was a feisty mouse who Mattie just loved hearing stories about. In fact, when we were trying to get a message across to Mattie to alter his behavior or point of view, we would craft a Mango Mouse story to help him see other alternatives. My mom felt as if the memory of Mango Mouse should be preserved!

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The Legend of Mango Mouse by Virginia R. Sardi

I saw a brilliant evening star that was shining in the blue inky nighttime sky. Illumination like this, my best instincts told me, is a sign from heaven of a new brightness come to light a darkened universe. Could it be that what I was looking at was the incarnation of the earthly incandescence that used to light my world in days gone by? Could it be that what I was looking at from way on high was a great big, brilliant star that connected me to past happiness and transformed itself into a great big Mattie smile?

Bold, radiant light from above reminded me of a beautiful day not long ago when after school ended, Mattie like Superman himself, joyfully devoured a big delicious piece of cherry pie in celebration of Washington's birthday. All the while he munched, he "multitasked" as he was prone to do as he listened to my tale of mischievous Mango Mouse. It was a story about a "boy" who lied to cover up his mistakes but whose nose gave him away by turning orange whenever he did. Mattie loved the story of the adventures of Mango and his friends and his great sense of the dramatic took hold whenever he heard about the escapades of Mango Mouse. He insisted that I add another character to the plot who surprise, surprise was named Mattie Mouse and who went along with Mango whenever he had another of his wild and zany ideas. He loved to inject new characters and plots into the many episodes of the story as it evolved. One plot he was very keen on was one where the two boys, Mango and Mattie, drove Mattie’s father’s car, without permission of course. Mattie would then prompt me to create some scary scenarios that had many unpredictable moments, like the time the boys were stopped by a policeman, who wanted to take them to jail for driving without a license. The moral of every episode would be that the “boys” realized how important it was to always tell the truth, no matter how hard that might be to do and everyone lived happily ever after. Mattie’s creativity injected youthful energy and excitement to the stories we made up and every time he added a new twist and turn to the plot, the stories just kept getting better. It was as if they had been "touched" by the hand of a budding raconteur. On this day, I was very curious about how he came to be so prolific in inventing characters and plots to add to my stories. So I asked him, “Where do your ideas come from?” His answer, "It's all comes from my imagination Grammie" and there was truth in that simple honest reply. Imagination unbound, sweeping, quick, incisive and irresistible, were all synthesized together in the mind of one little precocious and dynamic little boy! That was Mattie!

In my mind' s eye I remember that day and the happiness we shared together. To Mattie, playtime was always an intense and challenging experience, to be lived to the fullest, never mundane or ordinary. So whenever I engaged with him in playtime, I knew I’d better not let him down! He brought the concept of “having fun” to a new dimension and one way or other, even if by osmosis, you experienced “fun” like you never had before or ever will again! As to cars, trucks or any other vehicle on wheels, he knew them all and was secretly keen on driving one himself, realizing that it was not possible because he had to grow up first. “Speedy Red” gave him a chance to be a kid and drive like an adult. He loved every minute in “Speedy Red.” It was an awesome treat to see him maneuver in it like an old pro. It was his fondest wish and it did come true.

Tonight, I look up above at the magical brilliant star high above my house and wonder what kind of car he is driving now. If he can’t find one, he will create it for himself, of this much I am sure. Get out that heavenly glue gun right now! I still reminisce about the life force of this magical boy whose stamina, expressiveness and joie de vivre must now be testing the resilience of the best the angels have to give by making certain that NO creative stone up there is left unturned!

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I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "It was really nice to read Bob Weiman's tribute to Mattie and how he viewed Mattie. I too, added Mattie to my prayers on Yom Kippur this year and Tom and I recited the Yizkor at the memorial service as well. Sometimes I "hear" in my mind the symphony created by the variety of prayers for Mattie and I wonder what G-d makes of it all. I think it creates a heavenly music of its own and that Mattie hears and dances to it. I think listening to music that someone you love appreciated in their life is a prayer of its own. Today, enjoy the music Mattie loved and know he hears it again through you."

The second message is from my lifelong friend, Karen. Karen read in last night's blog my guilt for not sharing the musical, Sound of Music with Mattie. Karen decided to address that issue with me immediately and reminded me of the wonderful experience he had in the winter in NYC. Thanks Karen. Karen wrote, "Saw the blog. Mattie may not have been exposed to certain musicals, but he got to see the Lion King on Broadway and go backstage. I'm a grownup, and I loved seeing the backstage. I think Mattie liked that too. He certainly had a look of excitement and mischief while Pete carried him around. I think backstage to the Lion King will counter not seeing the Sound of Music any day of the week."