Saturday, July 31, 2010

Saturday, July 31, 2010

Tonight's picture was taken in April of 2005. Mattie was three years old. Each April, around Mattie's birthday, the US National Arboretum has a magnificent display of azaleas, with a display that seems to go on for miles. In 2005, we took Mattie to see these colorful and vibrant gardens, and as he and I were walking hand and hand, Peter must have snapped a picture of us. This is one of many things I miss about Mattie. I miss holding his hand and the tenderness one can only receive from a child.


Poem of the day: Emotions 2 by Charlie Brown

Sometimes I think
What's wrong with me?
I can only feel the sadness
That's where I seem to be.
Since the day that I
Lost my little boy,
It's so hard for me to feel
Happiness or joy.
Those emotions just seem
To be so far away,
I wonder if I'll feel them
In my life again someday.
But right now I think
My heart is just broken
And when you see my smile
It is only a token.
Because grief swallows happiness
And leaves very little
Sorrow and sadness on each side
And me in the middle.


I would say today was a tough day for Peter. When I am not feeling well or doing well, this impacts him greatly. I have been feeling run down for several days now, and not sleeping well at night, which isn't helping my mood. Peter and I tried to go out for a bit today, but I simply wasn't up for much. I spent the afternoon dealing with laundry. Laundry for us has always been an adventure, because it is located in the basement of our complex. This is one of the downfalls of city living. How I managed laundry in the days I had Mattie in tow, and when every single item of his seemed to get dirty faster than I could clean it, is beyond me. However, today in the laundry room, I bumped into the older lady I told you about weeks ago. The one who gave me a hug and said I was a nice person to listen to her stories. She told me more about her life today and all the people she has had the opportunity to work for while living in DC. On her way out of the laundry room today, she came up to me, and wanted to touch my eyebrows. She did not tell me she was going to do this, but just did it. That was a first for me! I am not sure why she was compelled to do this, but frankly I allow older adults far more leeway, than I would someone my age or younger.

Peter and I had dinner together on our deck tonight. But we did not dine alone, Patches (our cat) came outside with us, and hopped up on a chair and literally sat between us. Reminiscent of where Mattie would sit. In fact, our deck table can fit four chairs around it. However, Peter always removes one chair, and keeps the table set up only for three. I find that very symbolic of how our family used to be!

This evening as I sat down to write the blog, I could see Ann was sending me pictures through email. So periodically I would stop writing and check what she sent me. One set of pictures was almost overwhelming. They were pictures from the camp musical, like the one I saw last night. However, these pictures were taken in July of 2008 and July of 2009. When I opened up the 2009 picture, here is what I saw! A picture with Mattie, Jackson (Abigail's friend), Mary (Ann's mom), and myself. Last night as I sat in the auditorium, I did indeed look over to where we sat last year. I could picture it as if it were yesterday, and I remember how much Mattie enjoyed the show. He was literally dancing in his chair! It is quite a commentary of what can happen in one year's time. I told Ann that....."This is a tragic story told through pictures, and unfortunately we are the main characters in this book."


This week, as you know, I had the good fortune of having a birthday party planned for me. At the party, in addition to the beautiful and very meaningful beaded necklace that I received, I also received some other gifts. One gift was in the form of an essay. My friend, Liza's (a SSSAS mom and our co-chair of the Walk logistics committee this year) son wrote an essay on COURAGE. Liza's son, Tommy, is a rising junior at St. Stephen's and St. Agnes High School. I have only met Tommy once, and though he technically doesn't know us, he seems to have embraced our story and has captured his thoughts and feelings quite beautifully in this essay. The essay is very touching, meaningful, and certainly deeply feeling. Tommy seems to understand the profound loss Peter and I are faced with, and his question and answer to Mattie's purpose on this earth caught my attention. When I first read the essay, it did make my cry because Tommy highlighted Mattie's courage and bravery. I couldn't agree more, children battling cancer are special people and their families supporting them in many ways are unsung heroes. I feel this was a special gift to receive on my birthday and I attached Tommy's essay below so you could have the opportunity to see what was on the mind and heart of this 16 year old.

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Courage by Tommy May

We all have courage. We read about it in school, and hear about it on the news, and we even find ourselves hoping that we have courage to do something. But what is courage? Is it going back into a fire to save peoples' lives? Or is it the kid that sits in the back of the class, that's bullied, but can still find it in himself to go to school because he has dreams and aspirations? Sure we read and hear about it, but it's something that cannot be taught, it's something that "you" have to find out. We all have it somewhere deep inside. But that's why its called courage, because it takes something more to be able to use it. Courage comes in many forms, whether it be the fire fighter, or the bullied kid, but to me one of the most courageous things to do is to fight cancer. Cancer plagues our world with sadness and hardship for millions of families, but how they get through that, that's courage! To fight something that you cannot see, have never seen and will never see takes something. You will get sick, you might not even know why you feel sick, just that there is something making this happen to you. But to be able to fight that is unbelievable.

There was a little boy at our school, his name was Mattie Brown. He died of cancer earlier this year. We would bring dinners to his family before and after he passed, and I remember the eve of his passing and I'll never forget what I said. I said to my mom that I think everyone dies for a reason. That God makes no mistakes. He has created us for our purposes, and to fulfill those purposes. Immediately after saying this, I remember thinking to myself, well then, what was his purpose? How could he have already fulfilled his purpose? Then I said to my mom, I think he was put on this earth to inspire us, to inspire us to save others like him, even though we could not save him. That someone will be inspired to make a cure for cancer and raise amazing amounts of money to make sure people get the medical attention they need. I'll never forget that night. I honestly never even met him, whenever we would drop food he was either sick or I was at school. But even just hearing my mom mention him and talk about her visits, he touched my heart, and has changed the way I look at things forever.

RIP Mattie Brown
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I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I don't know how you could have sat in that auditorium and not reflected on last year and Mattie's attendance at the show. Abigail was his friend and I am sure in her heart she was missing him too. There is a fair amount of research on traumatic grief and it does in fact show changes to brain function and to the immune system as well. So there are physical changes that go along with the emotional ones. Apparently some of that can be helped by "retraining" the brain through meditation or Cognive Behavioral Therapy but it is a process and it takes time to create and reinforce new pathways. This might be something for you to try when you are ready. Those pathways for peace, happiness and learning are still there, but like an unused path through the woods, they are overgrown and almost out of sight. I think it was very astute of you to hold off on your comments about Mattie and to recognize that there are times we all like to be unique in someone else's thoughts, however, I do remember you making reference to Mattie as "shrimp boy" and how you tried to get him to continue to eat them as he wasn't eating all that well at that point. As I practice today I will send you my strength to help you through another day. I hold you gently in my thoughts."

Friday, July 30, 2010

Friday, July 30, 2010

Tonight's picture was taken in March of 2009. I honestly can't recall where this hat on Mattie's head came from. It may have been given to him by Linda (Mattie's childlife specialist). The beauty of this hat was it came in many pieces, not unlike a Mr. Potato Head. Mattie got to construct and design his own hat, by adding pieces to this snapping in plastic system. I loved the crazy concoction that Mattie designed, and only he could get away with wearing it! To me this photo highlights Mattie's whimsical nature despite being wheelchair bound and physically ill from chemotherapy.  I assure you there was a lot to be unhappy about, but if you worked hard to engage Mattie, he normally gave in, and in the end he was always the life in any hospital room.

Poem of the day: Words by Charlie Brown

It's your "new normal"
You should be "moving on"
These words seem to be
Part of a big con
What sort of normal
Can there be
When the physicality of a boy
Is replaced by a tree?
Or moving on,
On to what I say,
When I'm so sad
I can't think, let alone pray.
There are lots of these phrases
But they're not helpful to me
They don't tell me how to stop hurting
Or cease my crying you see.
What does seem to help
For a while at least,
Is have a friend sit and listen
That gives me some peace.
So for those who can do it
I want to say
Thanks for your kindness
You've made my day.

I began my morning by reading Charlie's poem, Words. I particularly liked how she highlighted my two least favorite words or phrases in my life.... new normal and moving on! It is impossible to accept our life as normal now, because if you think we can return to normal, then that means you would concede that it is okay for us to have a tree to turn to instead of Mattie, to have only pictures and things to reflect upon to capture the essence of our son, and that memories of our days of being parents and having a child's love are enough to carry us forward and snap us back into normalcy. Clearly, any one who is a parent or who spends a significant amount of time caring for children, realizes that none of this is acceptable and wouldn't be something one would self select.

I did not have a good night of sleep, but despite that I was unable to rest this morning, so instead of spending the day in isolation, which would have been an easy choice, I met Ann and her family for lunch. At the restaurant, I happened to run into a SSSAS mom. In addition, her son and Mattie were on the same soccer team together. We exchanged some light conversation, and then she began to tell me that her son thinks of Mattie all the time, and as she continued she began to cry, which for some reason impacted me. I then began to cry as well because I found it very touching that Mattie was still remembered by her son, a little boy who Mattie did not spend a great deal of time with.

This evening I attended a camp musical show. Abigail and her friend, Jackson were in this show together. The ironic part is last year at this time, Mattie was alive and attended Abigail's camp show. It was an odd feeling to be sitting in the same auditorium a year later, knowing that Abigail is one year older, becoming her own person, and enjoying the fun of singing and dancing, while Mattie is no longer with us. When I am around a room full of families and children, my feelings of being different become more profound. In fact, I almost feel paralyzed in these circumstances. You most likely couldn't tell this by viewing me, but I can internally feel I am building a wall of defense. As I was watching the show (which was wonderful and what I love about Abigail is she has a great stage presence and is always smiling to her audience) I observed those around me. They appeared to be happy and engaged, while I felt as if I no longer could relate to this feeling, and to some extent I almost feel as if I am intruding into a foreign world. I came home tonight and shared my jumbled up feelings with Peter, who naturally got it right away. He gets it so much, that he is very cautious about inserting himself into such events and situations. I on the other hand, I try to go into these events open and willingly, but as is typical I always have a delayed reaction to them. In fact, Peter and I got into a long dialogue tonight about traumatic grief, and how trauma can alter the physical make up of the brain. I am not making that up, there is a great deal of research on this scientific fact. Taking it one step further, I believe that the trauma of losing Mattie has altered how both Peter and I take in information, process the world around us, and in a way has wiped out the wiring for happiness and internal peace. Sounds harsh I am sure, but we both came to the same determination and conclusions tonight. We are lucky that we understand and can articulate our feelings with each other.

During Abigail's show, we were awaiting Katie's (Ann's older daughter) return from her two week sleep away camp. Katie arrived in time to see her sister's show. I couldn't see Katie entering the auditorium, but I could see Abigail visibly smiling and glowing on stage. When I saw Katie sit down next to me, I put two and two together. It was a very sweet home coming to observe, and in fact NO words were necessary. The exchange of smiles spoke volumes. After the show, I joined Ann and her family for dinner. I sat near her son, Michael, and my other 10 year old friend, Katharina. I was thoroughly entertained by two ten year olds at dinner, and got to hear all sorts of jokes! I also observed Abigail try shrimp and actually enjoy it. When I heard her mention this tonight, it brought a smile to my face. I was going to tell her that her statement reminded me of a Mattie comment. But I held back doing that, because sometimes I feel that one's own discovery should be appreciated without tying it to someone or something else. None the less, when Mattie first tried shrimp at one of Georgetown University Hospital's restaurants, Mattie loved it. In fact, that particular day, Ann and I nicknamed Mattie, "shrimp boy." He wasn't eating anything that day, but seemed to devour shrimp. That was a special day in a way for Mattie, because he survived a whole morning of SCANS, and as anyone who has ever done extensive testing with a child, knows the stress associated with waiting around, not to mention the incredible fear of entering intimidating machines. However, for me the worst of these scan days was waiting for the test results, which was like hell on earth. With each successive scan day, the results only got worse, and over time, Ann began coming to the hospital on those days so that I wouldn't be facing that nightmare alone. She lived through that torture with her brother, and now that I look back on things, I am not sure how she took on this intensity with me after having lived through it once. Scan days weren't easy for Peter either. Peter had his own nightmare going on, he was at work and worried about what was going on at the hospital with us.

Dr. Bob snapped a picture of all of us after the show. In the front row are Jackson, Abigail, and Michael and in the second row are Helen (holding Jackson's build-a-bear from yesterday), Ed, Ann, Tanja, Vicki, Katharina, and Katie.





I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Grieving is different for each person and we all walk our own path through it. At the workshop I was at last week, a speaker told the story of this older couple who had recently lost their adult son. Friends told them they needed to get help and so they went to a therapist who told them they needed to move on (those words again). The speaker who was sitting beside this couple on the plane asked when the son had died and they said "two weeks ago." He told them they were amazing, but that they were probably still in shock and to give themselves time. Can you imagine that? "Move on in two weeks?" Needless to say, there are some very unhelpful, uneducated therapists out there. I am glad that the plan for the foundation is moving forward and that you are in agreement with the Director of Media Relations at Georgetown about what that should look like. I think that will help you guide your steps into something rewarding and important. Although I am sorry you did not sleep well and you were exhausted, I bet your nap in that chair was relaxing. Being around nature and hearing the sounds G-d created is good for one's inner balance. I hold you gently in my thoughts."

Thursday, July 29, 2010

Thursday, July 29, 2010

Tonight's picture was taken in August of 2009. It is hard to believe that last August, Mattie was still with us. By this point, we knew Mattie was terminal, however, despite knowing this diagnosis, when I saw his smiling face, I had trouble accepting the reality. Probably so much so, that it wasn't until the nurses at the hospital told me Mattie was dying, did I then understand the fight was over. Up until then, I still believed we could keep him hanging on. I will never forget that feeling of complete shock, a feeling I have grown accustomed to for over a year. A feeling that almost becomes hard wired into me, that it is hard to remember life when I did not live in such a hyper alert state.

Poem of the day: Conflicting emotions by Charlie Brown

So hard to celebrate
One more time
A day that seems
No longer mine
All of my days
Are tied to yours
And all of those "rooms"
Now have closed doors
I'm trying to find
Someway to be
Both happy and sad
And it is hard for me
My life still has much
But I can't be glad
With missing you and feeling guilt
I mostly feel sad
I appreciate my friends
And all that they do
But there is still a big hole
It is so hard without you.


Since Mattie's death, I occasionally have very bad nights of sleep. I got about four hours of sleep last night, and today, I wasn't feeling in the best of moods or feeling physically well. When I opened up my e-mail today, I read Charlie's poem. Conflicting Emotions is a very appropriate name for this poem and for how I am feeling. I find that happy occasions and social gatherings can now sometimes have the opposite effect on me. I fully realize that the issue lies with me, and has nothing to do with others or the event per se. But celebrating internally now doesn't feel right. So on some level there is guilt associated with having a birthday party. Last night, after many of the party attendees left, there were about six of us who remained to sit and chat over food. Ann was commenting about how her mom, Mary, has a hard time understanding how someone who is grieving can "move on." Mary lost her son a little more than two years ago, yet in many respects this loss is very real and very fresh to her. Mary and I share this commonality, we both have issues with the term and concept, moving on. However, I realize NOT all people who have suffered the loss of someone close to them feel this way. Which further highlights how grieving is SO different for each person, and therefore when interacting with someone who suffered a loss, I can't assume this person will feel or act the same way as myself. Though I must admit understanding Mary's feelings, helps to normalize my own. Having these conversations with friends, I find very helpful, and being able to share these feelings with someone is a gift. The gift of time, a listening ear, and understanding are much better than anything you could ever buy me.

As many of you know the terminology, "new normal," used extensively in the social work community when helping newly diagnosed families, is a concept I really dislike. Moving on is a close second! For me, "moving on" is disrespectful and implies that Mattie's loss was something that I could rationalize, shelf some where, and re-establish my life. I had this terminology discussion with Ann this weekend, as she was trying to help me out of the funk I was in, and she tried to have me visualize "moving toward" something, and not necessarily on from something. So I continue to give that great thought.

I had a wonderful email exchange today with Marianne, the Director of Media Relations at Georgetown University Hospital. Marianne has been extremely helpful to Peter and I and the Foundation. We very much appreciate her willingness to share her time and expertise with us, and today, she helped us brainstorm some next steps for the Foundation. Mind you, when she was highlighting her thoughts, I hadn't shared my thoughts for the coming year with her. When I read what she wrote, I actually got excited. There is a word I rarely use now! But I got excited because Marianne was suggesting ideas that I embrace and would love the opportunity to follow up on. As these ideas begin to unfold and become a reality, I will certainly highlight them for you on the blog. But I guess what I am saying is that Marianne made me feel as if my ideas really did have merit.

Around lunch time, I asked Peter whether he could leave work for about an hour or so, and have lunch together. Which is what we did! Poor Peter, when he sits down with me, he just never knows what he is going to get. Peter started talking about how Mattie and I shared a very close bond, and as he began talking, I began crying. In fact, lately Peter and I haven't met for lunch when I did not start crying. Meeting for lunch for us is very important, because this is the time of day when we are both fresh and have the energy to talk about difficult issues. By dinner time, we are both usually spent and talking about our grief is just too painful at that point.

In the afternoon, I went with Ann, her cousins, and Abbie and her friend, Jackson to the mall. They wanted to go to the Build-a-Bear Store. When we got to the store, we met up with Tanja and Katharina. Out of the corner of my eye, I saw Mattie's wheelchair. Seeing that chair always stops me in my tracks, because Lord know, who I am going to see in that chair. Naturally though, it was Katharina who is recovering from her knee surgery. In the store, each of the children picked their animal that they wanted to create. Katharina held my hand and had me pick the animal she should build. I selected an owl! He just caught my attention. For the next 45 minutes or so, I watched the children build bears and an owl. They had the animals stuffed, got to select a fabric heart to place into the stuffed animal, picked out an outfit for the animal, and even made a birth certificate. Mattie went to this store twice. Once for a birthday party, and once at the Nat's stadium, where he created a Nat's puppy! After the construction process, we then went for frozen yogurt. A foreign concept in the DC area really, but a major reality in New York and Los Angeles, two places I grew up in. So Ann introduced me to something today that reminded me of yogurt my mom and I would get in New York City. Funny how tastes can bring you back in time!

When we returned back to Ann's house, I sat on her porch and literally fell asleep. I am so tired, and the sound of the birds, and wind blowing through the trees apparently knocked me right out. I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "As always I am profoundly impressed by the strength and impact of the blog. We all look at life a little differently now and are willing to step out of our comfort zone and take risks because you've reminded us how fragile and precious life really is. I really am impressed and grateful to Danelle for stepping up and saying something to that woman at the bus stop and then following through with a call to the transportation office for the school. I am sure that she will save some child from injury. While we rarely stop and thank anyone for preventing a catastrophe, in this case, I would designate her a heroine for going the distance on this. The party that Ann and Tina had for you was lovely; you certainly deserve to celebrate your day and I hope you can eventually find your way back to that without any reservations. The necklace is beautiful and totally unique just as you are; what a wonderful gift to receive from a very special group of friends. May today bring some more emotional sunshine into your life. I hold you gently in my thoughts."

Wednesday, July 28, 2010

Wednesday, July 28, 2010

Tonight's picture was taken around my birthday in 2009. Linda (Mattie's childlife specialist) gave Mattie a cake, so that he could give it to me! This was my last birthday I spent with Mattie.

Poem of the day: Little Boy Things by Charlie Brown
What's your favorite?
Anything with wheels
From cars and trains
To buses and planes
You loved them every one.
Now your wagon sits abandoned
And your cars, they gather dust
I cannot bear to see
How they will eventually rust
Where is your laughter?
Your smiles and your tears
I still want to be your mom
Sharing hopes and dreams and fears.
But now my arms are empty
And my heart is full of tears
I hate the thought of facing
All those childless years.


Despite my very great misfortune, today was a day where I once again was shown and experienced the beauty and generosity of friendship. Through Ann, I have had the wonderful opportunity to get to know her neighbor Tina. Some of you who read the blog regularly, may remember that recently I have been invited several times to Tina's house to swim in her pool. Tina and I haven't known each other very long, but when she found out it was going to be my birthday, she coordinated and planned with Ann a birthday party at her house. Tina and Ann outdid themselves tonight, and the many wonderful RCC moms, SSSAS moms, and some of our Georgetown University Hospital family who attended helped to make tonight a very memorable occasion.

As I told Ann last week, as this party was being planned, I did not feel very much in a party mood. I also told Ann I did not feel like there was much to celebrate. Ann heard me, but strongly feels that my life is worth celebrating. It was a special evening to reconnect with several moms who I unfortunately do not get to see as often as I would like. As I was explaining to my Georgetown University Hospital family who was in attendance at the party, it became very evident to me, that many of my friends I met through being Mattie's mom. Without Mattie, I would never have had the opportunity to cultivate these friendships, in many ways, Mattie brought a new world to me, and though he isn't physically present in my life, his handy work is still going strong.

I would like to share some photos from tonight's party with you!

In this picture you can see that Ann is handing me a group gift. She explained the gift and also handed me a scrolled up piece of paper. I joked with her and asked her if she was handing me a diploma.

I sat and opened up this amazing and extremely sentimental gift (sentimental, because these ladies know that I always wear Mattie's beads that he strung together for me on my wrist). The gift was a string of beads. But not just any beads. Each attendee at the party, went to a bead store in Old Town, Virginia and hand picked out a bead that was strung on this chain. Each bead has its own shape, color, character, and significance. Reflective of the friendships in my life.

When I got home tonight, I opened up the scroll and laid the beads on top of it. I wanted you to be able to see the details of the beads. On top of the scroll it reads:

In memory of the wonderful jewels created by your Mattie, this gift has been lovingly created by many of your friends, who care deeply for you.

The remainder of the scroll, lists a friend's name and the bead this friend gave me. There is a corresponding number, so I can match each bead to each person.

In addition to all sorts of wonderful foods, there was an amazing array of desserts. Ann snapped a picture of a birthday cupcake that came my way.

A picture of Tina and I together. Tina was the very generous host of tonight's party.

Some of our Georgetown University Hospital family in attendance. From left to right:
Dr. Aziza Shad, Katie Kennedy (aka Dorothy to Mattie, because of her shiny red shoes), Dr. Kristen Snyder, and Sarah Marshall Greene (our Angel of Mercy, who was with Mattie the night he died).

A picture of the whole group.
Front row: Tina, Ann, Vicki, and Katie
Second row: Helen (Ann's cousin), Christine, Liza, Grace, Catherine, Sarah Marshall, Kellie, and Tanja
Last row: Junko, Mary, Michelle, Marisa, Denise, Dr. Aziza Shad, Dr. and Kristen Snyder

At the end of the evening, Tina took a picture of Ann and I. Tina gave me these glorious pink roses and they smell as fragrant as they look.















I would like to end tonight's posting with three messages. The first message if from my friend, Charlie. Charlie wrote, "Forty five weeks, it seems both a life time and a blink in time. I know it seems so strange to be without Mattie. I think we as mothers gravitate toward other women with children and when you are seen as without them, the connection doesn't naturally happen. Whenever I am in a store or a restaurant, any woman entering with children seems to look around for and make eye contact with other mothers who are there. It is as if you don't have the right combination to make the connection. It happens with other people as well; I always looked for others in military uniform and made eye contact; now they don't "see me" the same way because I wear civilian clothing. It is a difficult adjustment to make but the point is that what you are feeling is real! Like other things about this whole situation, you have to find other ways of making connections now and that is difficult. As you said in your blog about the relationship between children and older adults; they have so much to give each other and yet we set things up in a way that isolates them from each other. Children need more accepting adult attention which many of our elders would be happy to provide and the elders need the energy infusion that comes from being with children. In other societies the grandparents or elders are the caretakers of the young, I believe to the advantage of both. As for the "unconscious" mom, I won't even go there. I think you said all that needed to be said on that one. Thank goodness Ann caught the boys before they made it out the door. As you go through this day, know I continue to pray for you. I hold you gently in my thoughts."

The second message is from my friend, Danelle. Danelle and I emailed back and forth today regarding what I observed and reported about in last night's blog. Danelle has had a similar observation, however, what I admire about her is she actually took a proactive stance and tried to advocate for the children who are clearly in harms way. Danelle wrote, "I was struck by the story about the mom at gymnastics. I have had a situation this week where I feel like a mom was putting her kids in harm’s way and struggled with what to do. I often drop Brian at the Pentagon City Metro and then cut back through on Joyce Street (heads from Pentagon Row up to 22nd in Crystal City). It is a pretty major cut through for people, and the cars tend to go pretty fast. A few mornings this week, this mom has been waiting at the bus stop with 5 or 6 kids (she must walk kids besides her own, which makes it even worse – she is putting someone else’s kids in harm’s way!). They appear to be waiting for the bus for summer school or something. The kids sit on the curb with their legs and feet in the street. It is a narrow street with parked cars, and the cars are already squeezing by each other. Anyway, every time I have seen those kids there, I’ve gotten nervous. It would be so easy for something to happen to them sitting like that. And I don’t think the kids should be taught to feel that comfortable sitting that close to traffic.Today I finally rolled my window down and told the mom that I thought the kids should be further back from the street, that it made me very nervous having them in the street like that. She said, “oh ok,” and I rolled up my window and pulled away. I watched in my mirror as far as I could see, but she never moved the kids back (these are younger elementary kids). Well, I thought about calling Arlington County schools about it, to see if anything could be done. Then I came home this morning and read your blog entry, and it helped me to decide that I definitely needed to call. I just called the transportation office for that school district and spoke with a very nice woman who agreed that it wasn’t safe, looked up which bus stop it must be, which driver she thinks it is, and promised to talk to that bus driver and have him say something to the mom about it. She said that if I still see it happening, to please call back. You never know if someone will take something like that seriously when you call, but I really felt like she did. I assume you guys were at Barcroft. I wonder if Ann hadn’t been following those kids out, if the person at the front desk would have stopped them, or noticed anything wrong? If anyone would have spoken up before those kids were out in the parking lot. I don’t know that there were too many parallels between the two situations but for some reason they linked in my mind and helped me decide to call. Thank you for the “prod.” Take care!"

The third message is from my friend and colleague, Nancy. Nancy wrote, "I am glad that you were able to watch the transaction between Michael and Jackson at the facility. Your stories about the children always bring Mattie to my mind and I silently picture him enjoying their play. Of course, we would trade everything to have had him be with them. It is amazing to see how Ann's children will naturally engage the elders. Kudos to them and to Bob and Ann for setting such a wonderful example. In contrast, your story about the Mom and her three children was right on target. How disturbing to see that a grown up will forget that little people like to wander or explore when they are not engaged with the environment and their responsibility for their safety. Although you didn't react directly with this Mom, you have taken a stand by reminding all the readers of the need to keep watch over their children. Finally, Charlie's poem was beautiful. I believe that the phrase Mattie Moon has become a new entry in each of our personal dictionaries. I think I shared this with you before, so forgive me if I'm repeating myself. I told you that Mattie's notecards and stamps are special treasures. These along with yesterday's comments and picture prompted me to send a note to someone. Because of the nature of my message, I chose to use one of my stash. I don't use them often because it's my way of honoring and holding on to Mattie's creation. It made me realize just how much your family was on my mind. Thank you, Mattie, for a beautiful sun! Rest peacefully and know we all think of you."

Tuesday, July 27, 2010

Tuesday, July 27, 2010 -- Mattie died 45 weeks ago today.

Tonight's picture was taken in July of 2007. Mattie was five years old. Mattie loved vehicles, all types: cars, trains, planes, and boats! As you can see, Mattie traced out a picture of a bus, but what always caught my attention in ALL of Mattie's pictures was he would draw a sun. A sun speaks volumes in a child's drawings. The sun tells us so much about our time, place, and orientation toward the world. Mattie's suns always had faces as well, usually smiling ones. I particularly love Mattie's smiling face in this picture, it matches the sunny picture he was holding. However, in this picture, you can see that when Mattie smiles his left eye seems to squint shut more than his right eye. My eyes do the same thing, as can be seen in many pictures, and it is eerie sometimes when I look at pictures of Mattie, how I feel as if I am staring at a picture of myself.  

Poem of the day: Mattie Moon by Charlie Brown


They say the light of the moon
Is only a reflection of
The light of the sun
Is that the reason
I feel so diminished by your loss?
You shined so brightly
That you illuminated all around you.
You were the sun and the moon,
And you lit up our home
Whenever you smiled.
The sun shines
And the moon glows
But they are too distant
To heal my broken heart
I miss my own Mattie Moon.

Charlie's poem, Mattie Moon, seems very appropriate as I reflect on the 45th week Mattie has been gone from our lives. As her poem accurately portrays, Mattie had a smile that did glow like the sun, and without that smile around, the world seems a little smaller, a lot less bold and beautiful, and much more ordinary. As I continue to deal with my grief, I have noticed one thing in particular. Sometimes when I am around other parents and their children, I feel invisible. Not that I am really invisible or that others are treating me this way per se, but not being a parent anymore puts me on the periphery. I haven't been able to actually describe that feeling until tonight, or maybe because it isn't a good feeling to focus upon, and therefore I try not to. Feeling invisible is not a concept that is novel to any of us, at some point in our lives, we are all faced with a social circumstance in which we feel out of place and virtually invisible to those around us. How do we become visible again? In my case, the answer to this is not so simple to generate.

I started my morning by heading to the vet to pick up Patches. When I got there, the people at the front desk of the clinic were surprised to see me. They are used to having Patches for VERY long boarding stays (when Mattie was in the hospital). Needless to say, they were sad to see Patches leave today, but I told them they would be seeing her back in a few weeks. Patches is a VERY vocal cat. The boarding facility is up one floor from where the check in desk is, but when Patches goes into her carrying case, you can hear her screaming a mile away. Patches is very happy to home today, and enjoyed time out on our deck, soaking up the sun.

I spent some time with Ann and her children today. Abigail's friend, Jackson is visiting from Pennsylvania. Mattie actually met Jackson in July of 2009, and they got along very well together, since they have similar personalities. Both of them are creative and love to build with Legos. When Jackson saw me today, I thought it was very sweet of him to tell me that he misses Mattie, and he enjoyed playing by the pool with him last July. That comment stayed with me all day. Jackson and Ann's son, Michael, went with us to visit Mary (Ann's mom). There are two other residents who live on Mary's floor at the assisted living facility, and though these individuals are most likely cognitively intact, they are unable to speak. I can only imagine the frustration these individuals feel, because they are trapped inside their bodies, unable to communicate. Today, I had the wonderful opportunity to see the power of children in the lives of older adults. Michael and Jackson used playdoh to construct different objects, and the older residents were intrigued by their creations. They got to hold what the boys created and you could see their faces light up because they had this young stimulation. Michael and Jackson then set up plastic bowling bins and balls with the two older residents. Neither resident could speak, but you could see in a way that their was an awakening. Their spirits were coming alive, as they were asked to participate in the fun. It was a sight I won't forget anytime soon, and it further proves the beauty of inter-generational interactions. Needless to say, in all the time I have visited Mary, I have never seen these two individuals more animated than today.

Later on in the day, I was with Ann as we picked her daughter up from gymnastics. Ann and I observed this mom come into the building with three children in tow. One child went into the gym for her class and her other two boys, who couldn't have been more than 2 and 4 years of age, were standing by her side in the lobby. This mom became engrossed in a conversation with her friend, and literally turned her back to her boys. As 2 and 4 year old boys will do, they wandered around, and then wanted to leave. But their mom did not take notice. For some reason, these little boys saw a woman with blond hair, who they thought was their mom, heading out of the building. So they began to run to catch up with her. Ann was watching this whole scene, and began running after the boys. Ann was on the boys, and I was simply glued to the mother, who was absolutely oblivious to the fact that her sons left the building and were heading into a parking lot following a woman who wasn't even their mother. Ann got a hold of them right before they hit the parking lot and when she brought them back inside to find their real mom, their mom did not take notice. She did not even look up. She continued talking and basically did not even realize what transpired while she wasn't paying attention. This whole scenario today troubled me. It bothered me on many levels. First, I did not care for the subtle message this mom was sending her children, which was her conversation was more important than their whereabouts and safety. Second, I did not see any other parent concerned about these children wandering outside the building. If it weren't for Ann, what would have happened to these children today? Third, what I regret is I did not go up to this mom and explain to her what I observed. Maybe because I was just too stunned by her total disregard! She has three healthy children, and yet doesn't seem to appreciate that and the responsibility that comes with parenthood. She left me disillusioned and upset.

While writing tonight's blog, our friend, Carolyn (the chair of the raffle committee for this year's walk) was e-mailing me back and forth. Since she knows Ann and I to be like Lucy and Ethel (from I love Lucy), she was trying to provide me with a TV analogy for herself and her close friend. She came up with Laverne and Shirley. Well this got us on a whole 1970's TV discussion. As Carolyn is so good at, she got me laughing tonight!

I would like to end tonight's posting with two messages. The first message is from Mattie's oncologist and our friend, Kristen. Kristen wrote, "Another Tuesday has arrived and with it, my thoughts of you. I hope you had a nice beach retreat. We've lost power and probably won't have it back until Thursday or Friday. I'm wishing I was at my own beach retreat right now!! There are so many meanings one can find in the movement of water... At times, grief is like a wave which ebbs and flows into shore. Sometimes, the water is rocky and stings as it hits you. At other times, it envelopes you slowly and carries you away before you realize it. My hope, is someday the water will bring you a sense of peace as well. Thinking of you, this Tuesday and everyday."

The second message is from my friend, Charlie. Charlie wrote, "I am glad you had a break from DC and although it was hot at the beach as well, I am sure it was a more pleasant environment overall. Thank you for posting that picture of the cake as I kept trying to picture what it looked like and I can see I was definitely off the mark. I think it is very playful as well as thoughtful. It's great that you had the opportunity to visit with so many friends over the course of the weekend in a more relaxed place. I really liked Nancy's poem and as she said "a parent is one forever" and I hope you can find an outlet for the skills and love you bestowed on Mattie. I hold you gently in my thoughts."

Monday, July 26, 2010

Monday, July 26, 2010

Tonight's picture was taken in June of 2004. Mattie was two years old. Notice that I am sitting next to him in the back seat. In fact, I did not graduate to the front seat, next to Peter, until Mattie turned four. Peter and Mattie made a deal with each other, that by age four, Mattie was going to be a big boy, and not need me sitting next to him all the time. I am sure at the time, sitting next to Mattie for the simplest of car trips got to me. But looking back it really only showed one thing. Mattie and I shared a very close bond. In this particular picture, you see Mattie pitching a fit. The fit had to do with the fact that when we went through the McDonald's drive thru they gave us a chocolate shake for him instead of a vanilla one (we did not realize this mistake until after Mattie tasted it). Mattie truly disliked chocolate, and as his face clearly showed he wasn't happy with the chocolate mistake. Peter snapped a picture of us together in the back, most likely because we were both a riot. I was chuckling over Mattie's reaction to tasting chocolate, which only further inspired Mattie to ham up his response.

Poem of the day: Reconciliation by Charlie Brown


Another day of ups and downs
My birthday and
The announcement of what was
To bring us finally to the end
Of your life.
How can I reconcile that?
What is left to celebrate?
As I sit here
Tears on my face
I know I will always
Miss having you in my life
And I do grieve and
Will grieve again
All the losses of a lifetime.

On Sunday night, Ellen and her daughter, Charlotte, arrived back at their beach house. We had a chance to chat and even view the full "Mattie Moon" together. Both Ellen and Charlotte are very aware of the significance of the moon to us. I do not see Charlotte as often as I once did, but I have had the opportunity to see her a couple times in these past few weeks, and each time I do, it only confirms to me why Mattie liked Charlotte so much. Charlotte took pictures of the moon last night, and Peter was right beside her doing the same thing. However, before Charlotte went to bed, Ellen asked her daughter to say good night to us. Charlotte came over and gave me a big hug, and then did the same to Peter. Her hug was very sweet and I could feel that she wasn't just going through the motions. Her hug had substance to it, and what you need to understand is Peter and I rarely receive hugs from a child anymore. So when we do, I do take notice, and it leaves you with a special feeling, and a feeling of what we are missing.

This morning, we packed up our things, and said good-bye to Ellen. We are returning to Ellen's house for a week in August, and Peter and I are very grateful to her for her kindness and generosity. At around lunch time, Peter and I headed to Rehoboth Beach to see Tamra and her family, who are vacationing there. Rehoboth beach is about 15 minutes away from Bethany Beach, where we were staying. We walked around Rehoboth for a while, and then had a delightful lunch with Tamra, her husband, and two daughters, Louise (a sophomore at Rice University) and Meredith (a senior at St. Stephens and St. Agnes School). Louise and Meredith are both very familiar with Mattie and our family, since they helped care for Mattie in the Summer of 2009, before he died. They would occasionally come over to our home and play with Mattie, while we took a break from our in-home hospital routine. Louise and Meredith brought a great deal of life and energy to all their play sessions with Mattie, and those fun moments will never be forgotten by me.

They bestowed me with gifts, lunch, and a birthday cake this afternoon. It was a very thoughtful gathering, and while I was talking with Louise, I noticed she was wearing sea turtle earrings. I couldn't help but comment on them, since Mattie's preschool adopted a sea turtle named Roxana for Mattie, and since that adoption Mattie was always very focused on anything related to sea turtles. In fact, Tamra gave Mattie a mood ring, with a sea turtle on it, and this ring can now be found in my jewelry box , because it meant a great deal to Mattie. Louise and Meredith are both teenagers, however, one shouldn't let their young age deceive you. They are very mature, witty, and deeply feeling young ladies, and I can't help but notice that each time I see Louise she has Mattie's wristband on that says, "March for a Mattie Miracle."

Peter and I drove home this afternoon, and thankfully had a very smooth and uneventful trip. Our plants were happy to see us and to receive water, and I know Patches will be excited to return home tomorrow. I wanted to share some pictures with you that we took at Bethany Beach.

Ann took a picture of Peter and I digging in the sand with her daughter, Abigail.

I am at the beach with Ann's daughter, Abigail, and her son, Michael.

Yesterday, I tried to describe the chocolate cake that Abigail and Ann made for my birthday, but I figured a picture would be more helpful. As you can see, Abigail used gummy worms to spell out my name (she knew Mattie LOVED worms), and she also put a marshmallow family at the top of the cake. Notice the marshmallow person in the middle. That marshmallow represents Mattie (between Peter and I), with a gummy worm halo over his head.

Peter snapped a picture of Ann and Abigail with me and this special cake.

Right in the middle of Ellen's garden at her beach house, I saw a bunny. It was quite an unusual sight for me, so out came my camera.

Peter snapped several pictures last night of the FULL "Mattie Moon." The moon was moving through clouds but it lit up the sky in an incredible way!











I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I know that yesterday was incredibly difficult for you. As you said in the blog, what a birthday present to receive two years ago, a diagnosis of osteosarcoma. How do you put that aside and make anything of this day? Perhaps, rather than expecting to celebrate the day yourself, you can give the celebration back to your parents and have them and others recognize another day for you. I know that sounds strange, but I always send my parents a thank you on my birthday; I felt it was their day anyway, not mine. They sent me a note on my commissioning date as I felt that was the start of the life I chose to live. Maybe yours could be your graduation date or some other date that is meaningful to you. Just a thought. Regardless of the date you celebrate, you are correct that the best gifts are the gifts of kindness and thoughtfulness rather than material ones. I hope you got to see your "Mattie moon" last night. I dedicated my practice to you yesterday hoping you could find the strength to smile. I hold you gently in my thoughts.
Butterfly story from yesterday: I came out of the gym to find a butterfly on the windshield of my car. It was splayed there, not moving and I was afraid it was dead. I wondered how I could have driven to the gym without noticing it there? I left it there as it wasn't directly in my sights and I drove home (all local roads so I never went very fast). I pulled into the driveway and parked, and I got out to get paper towel intending to remove it and it fluttered its wings and came off the window. It flew over to the area where we have flowers that the butterflies like and it settled on first one flower and then another. It flew about for several minutes and then headed over to my neighbors' yard. All that time I kept thinking, "you seemed to be dead, but you weren't. I am so glad I was able to see you rise and take off" And that made me think of Mattie and his spirit which although it is beyond our sight, has taken wings and flown."

The second message is from my friend and colleague, Nancy. Nancy wrote, "Charlie has written some beautiful poetry and has such a way of restating your feelings and day's activity. She is a warm support and you are both lucky to have touched each other's life. As for life, I was so glad to read of how Peter and you spent the weekend. Abbie and Michael are such gracious reminders of a child's ability to understand feelings well beyond their years. It appears that everyone was anxious to give you a beautiful birthday dinner and they succeeded. I know that Mattie was with you as well and yet, you missed his wonderful hugs and smile. The article in the Washington Post was A - OK. Your picture in front of the couch with the large portrait of Mattie spoke volumes. Congrats to all of you who lobbied on the Hill this past week. It is with grassroots groups like yourselves who will see that action is taken by Congress. As we know, everyone wants to be a good guy and get reelected. We also know that this is an important cause and with all the money spent on frivolous spending, the least our leaders can do is support Family Values and Health Issues."
Hope you like my poem for today:

EACH DAY by Nancy Heller Moskowitz

I wake up to find
my mind filled with ideas,
memories and feelings.
Many include sadness,
a partner for these last ten months.
They say a parent is one forever,
yet, I've no child left to guide,
at least, not my own.
Tears are sparse, for then
I might feel the depth of my loss!
But, wait.
Yesterday, a Mattie Moon appeared
and for an instant,
I was happy!

Sunday, July 25, 2010

Sunday, July 25, 2010

Tonight's picture was taken on July 25, 2008. Mattie was officially diagnosed with Osteosarcoma on that day at Georgetown University Hospital. Since July 25, is my birthday, this was quite a birthday present in 2008. A present which will always remain with me, or haunt me as the case may be. Even my birthday is bittersweet. On July 25, 2008, we thought one bone tumor was horrific enough, but it wasn't until August 6, 2008, that we learned Mattie had multifocal osteosarcoma, meaning that there were four primary tumors (one in each arm, one in his left wrist, and one in his right leg) to contend with and battle. In this picture, you will see Mattie with his first oncologist, Dr. Jeff Toretsky. Peter and I were adamant right from the beginning that Mattie should be told he had cancer. We felt it was important for Mattie to be part of the process, in an age appropriate manner. Since the treatment and surgeries were going to be extensive, sugar coating the problem wasn't going to be helpful to any of us. In this picture, Mattie can be seen stomping out a model magic bone bug. I coined the term, "bone bug," mainly because children understand the concept of a bug, and the need to kill it. This analogy worked beautifully with Mattie, and even when chemotherapy began we talked about how this toxic medicine was zapping out bone bugs, and I on many occasions helped Mattie visualize the death of these horrible bugs.

Poem of the day: An Ocean of Loss by Charlie Brown


I walk the beach
Surfing the waves
Of grief and loss.
Over and over
They pull the sand
Into the ocean.
Is that how it is?
That grief pulls you under
Until you disappear from sight?
Sometimes I wish to disappear.
But there is another force
That of hope, buoyed by friendship
That keeps me afloat
Even in this deep sea
Only sometimes can I reach out
When I can't
Reach out to me.

For some reason, I had a hard time falling asleep last night and staying asleep. I think I slept about four hours total. When I woke up this morning, I went to sit outside, despite the heat, for about four hours, reading my book. I can totally appreciate the hard decisions the mother in this book, My Sister's Keeper, had to make regarding her daughter's cancer treatment. I was in a complete funk this morning. I am not sure if I was feeling this way because it is my birthday and Mattie is no longer in my life, or that I now associate my birthday with Mattie's cancer diagnosis. I received many wonderful e-mails today from family and friends and I greatly appreciate my friend, Amany, who was text messaging me throughout the day. She understood the significance of today and how hard the day was going to be.

When Ann got up, she came looking for me. She found me outside, and started singing happy birthday to me. As she turned the corner, she could see I wasn't in the happy birthday kind of mood. So instead, she pulled up a chair and we chatted for the next several hours, in the heat. If that is not what friendship is about, I am not sure what is. I have to imagine the fact that Ann and I experienced Mattie's death and the death of her dad together, has profoundly altered our world view, and our view of the world together. I know Ann wants me to be happy, and she can sense that I will not on some level permit myself to be happy because of ties and feelings of loyalty to Mattie. Today she worked very hard at getting me to reflect on Mattie and whether I think Mattie would want me to be so unhappy on this earth. I understand on some level the answer is NO, but as usual my cognitive level is not in line with what I am feeling. 

Ann worked hard at cleaning up the kitchen, sheets, and towels today so that I wouldn't have to do it. Her efforts did not go unnoticed, and to me it is these acts of thoughtfulness and kindness, that are the true brithday gifts I can receive. After we said our good-byes to Ann's family Peter and I went out for a drive. We stopped to have a late lunch by the water in Fenwick Island, DE. After which Peter and I stopped at various shops along the way. As I am writing the blog this evening, we are having a major rain and wind storm at the beach. Things have grown dark outside and the wind is whipping around the house. Peter and I react to these weather moments differently. Peter loves it and is fascinated to experience the storm, and I can't wait until it is all over.

Peter received a phone call yesterday from our vet. Patches, our 14 year old cat, is very ill and is now dealing with kidney failure. I wasn't happy to receive this news yesterday, but like Mattie's illness, I am taking it one stage at a time. The vet thinks she has a prognosis of three years more of life at the most. Patches has been a challenging cat, but a very loyal cat, and was always a good companion to Mattie. It is ironic, I always worried that at some point I would have to explain to Mattie the loss of Patches, because she is an older cat. I had no idea, that Patches would outlive Mattie.

Since tonight will be a full moon, I will definitely be looking up at the sky to find my Mattie Moon. Last night, Abbie (Ann's youngest daughter) was staring at the moon and asked me if I could see his face. She pointed out the moon's eyes, nose, and mouth to me. She then said that the moon's face was looking down toward the earth, or in other words, Mattie was looking down at us and smiling hello. It was a very sweet and heartwarming comment. As we head into Monday, Peter and I plan on meeting up with our friend, Tamra in Rehoboth Beach before we drive home. Tamra was the first person to e-mail me yesterday, to congratulate us on The Washington Post article. It was a very touching message, and it helped me to see the magnitude of having the Foundation covered in the Post.

I would like to end tonight's posting with two messages. The first message is from my mom and her wishes for me this birthday. My mother wrote, "Congratulations on your birthday and may the future years ahead sparkle brightly for as the card says there is 'some star you haven't even seen yet that is sparkling in your corner of the sky.' I would venture to say that this card was meant for you this year to remind you that indeed, there is a 'new star' in the firmament. It has a familiar name, face, and smile with a big open generous heart that you would recognize instantly as your very own 'Mattie Miracle Star!' He, is new to the heavens, and uses his brilliant, bold and spectacular light to show how very much he loves you by sending these glorious beams to you directly here on earth. His light is accompanied by a special telepathic message that assures you that he is never really far away from you although you may have to concentrate hard to 'sense' his eternal presence. Look for him in the heavens every night for he depends on that and will remain in 'your corner of the sky' until the end of time!"

The second message is from my friend, Charlie. Charlie wrote, "I am delighted that you had a really nice birthday celebration yesterday. I wish I could have given you the gift I know you wanted most: one of Mattie's hugs or kisses. I am glad you were with people who knew and recognized that. I read the article on Saturday and again today. As you know, I was in the workshop and it took everything I had emotionally so I wanted to reread the article today and look at the photos from a more "stable" place. I think Rick Rojas did a great job of putting your loss into words even those who are fortunate enough not to have gone through a trauma like this would understand. The pictures posted with the article are great and they do look like you and Peter but my favorite is the one of Mattie's sun. I thought it was nice of you to share the blog with Abbie and Michael; as you said the blog is not really for children, but it is important that they are aware of it, that they know that adults can show and honor honesty in feelings just as children can. As I finally come back to practice today after three days away, I send you the strength I find in facing and accepting myself. I hold you gently in my thoughts."