Saturday, March 13, 2010

Saturday, March 13, 2010

Tonight's picture was taken in May of 2007, during our trip to Lancaster, PA. As we were driving by a field, we saw a big rainbow like pad on the ground. It caught our attention, and we stopped the car. As we approached it, we could see that this pad was actually a trampoline. But it was like NO trampoline I had ever seen, it was flat on the ground and not elevated. Mattie had a great time bouncing, running, and jumping on this thing, which was out in the middle of a field. Certainly an unexpected surprise!

Poem of the day: Gone but Not Forgotten by Kelsey Y. Sheppard

You were so full of life,
Always smiling and carefree,
Life loved you being a part of it,
And I loved you being a part of me.
You could make anyone laugh,
If they were having a bad day,
No matter how sad I was,
You could take the hurt away.
Nothing could ever stop you,
Or even make you fall,
You were ready to take on the world,
Ready to do it all.
But God decided he needed you,
So from this world you left,
But you took a piece of all of us,
Our hearts are what you kept.
Your seat is now empty,
And it's hard not to see your face,
But please always know this,
No one will ever take your place.
You left without a warning,
Not even saying good-bye,
And I can't seem to stop,
Asking the question why?
Nothing will ever be the same,
The halls are empty without your laughter,
But I know you're in Heaven,
Watching over us and looking after.
I didn't see this coming,
It hit me by surprise,
And when you left this world,
A small part of me died.
Your smile could brighten anyone's day,
No matter what they were going through,
And I know everyday for the rest of my life,
I'll be missing you.

At today's board meeting, I was given the opportunity to tell the members a little bit about Mattie and about the Mattie Miracle Cancer Foundation. Naturally the board was aware of what I was dealing with, since I have been absent physically from my position for over a year. However, I think hearing about the story live, makes an impact on those who are listening. I could see people visibly moved. As one board member said, it is hard to read Mattie's blog sometimes because I am reporting on a mother's worst nightmare. Therefore, in a way, the pain that I am reporting gets people to pause, because they can't help but wonder what they would do if faced with the same crisis. Some times I realize that others look at me and are amazed at what I accomplished. Yes Peter and I tackled many things from learning about osteosarcoma, learning to navigate through a medical system, and the most challenging was managing the treatment and its after math. Now of course, our life challenge is living without Mattie. However, as a parent, when your child is faced with a life threatening illness, you tap into personal reserves you never knew existed. It was very thoughtful for the association president to give me this chance to talk about Mattie and it was very meaningful to me to hear board members' input, questions, and feedback.

At the end of the board meeting, I had to say good-bye to the members. I have served on the board for three years, and this concludes my service. It was a bittersweet good-bye, since for two years, I really couldn't adequately serve my position. This greatly disappoints me, but in the end, Mattie's life and my time with him was more important. There was never any doubt in my mind about my priorities. However, after all the board members left the room, one remained. This board member and I had a chance to chat. I had the honor of hearing about his life, and though this is his story, not mine, I therefore can't detail it here, but suffice it to say, the conversation I had with him was very powerful. I began to realize that fate brought me there today to talk with him, to hear about his amazing life, and to share tears. He did express to me that God was with me always, and that he hasn't forgotten me. As I told him, his story moved me and I admired his courage to share it with me. It was as if I was meant to hear this story, like he says others are meant to hear mine. After today, I can attest to the fact that it is possible to meet a person, someone you may not know very well, and this connection can be life altering. I had this type of connection today. What we say to each other can make all the difference in the world, and it is my hope that some day I can return this kindness by finding a person who needs a listening ear and a word of encouragement, and through this interaction provide them with a ray of hope. That is what I received today, besides a real human connection, I received a ray of hope. The whole conversation was very inspiring that I left crying and continued crying on the car ride home.

It was interesting to hear what many of the mental health professionals in the meeting today had to say about grief. After all, they do a lot of this work with their clients. What I came to see is that the process is just complicated, there is no right or wrong way to grieve, and I just felt verified in my own thinking about grief work. Another board member handed me a gift today. I opened it when I got home and it was an adorable little handcrafted box with doves on it. Doves have great significance to me, since we had a mother dove who built a nest and laid her eggs on our deck last year. Mattie was fascinated by the process, and ironically, we have another mother dove who has returned to the same window box this year. I can't think about the mourning dove, without thinking about Mattie. So in essence this was a very meaningful gift to me. Today was not the day I had expected. I found telling Mattie's story very helpful and I appreciated the opportunity to be heard.  

Friday, March 12, 2010

Friday, March 12, 2010

Similar to the past couple of nights, tonight's picture was taken in May of 2007, during Mattie's trip to Dutch Wonderland. After a full day at the park, we ended the visit with a boat ride in the park. The actual captain of the boat, relinquished his seat and allowed Mattie to sit and navigate the boat. As many of my readers know, Mattie LOVED boats. So much so that when we found out that Mattie's cancer spread, our immediate thought was to grant Mattie a special wish. Which was to pilot his own boat. Team Mattie mobilized forces, and believe me, some amazing boat offers came our way. However, by that point Mattie was too sick, and was frightened to go on a boat. This was deeply upsetting to me, because this indicated just how ill Mattie was and how cancer had changed him. When I came across this photo tonight, it brought a smile to my face, because Mattie did get to be a captain of a boat, and I had forgotten. He loved that day at Dutch Wonderland and the thrill of acting like the captain.

Poem of the day: Time


Is Time my friend
Or my enemy
Yes, Time has washed away the sharp edges
The intensity of the pain
And provided some relief
But will Time rob me of the images
I need to hold on to
Will it take the sound of his voice
Will it take the feel of his tight hug
Will the bright smile fade away
Along with the quick laughter
That always softened my heart
I have a place where he visits
Inside my heart and soul
Whenever I go there
He is waiting
And we talk awhile
When I move around this altered world
I feel his hands on my shoulders
As if to say
You can do it Mom
I know you can
So please Time
Go easy on me
Allow me to savor these images
It's all that left to me now
Allow his strength and gentleness
To stay with me
And my heart to remain open
While he waits for me

Today was a difficult day from start to finish. This poem sums up my feelings quite well. I know on some level I operate in an "altered world," but it isn't until I interact with people who are not intimately involved with my suffering do I realize just how profoundly different I am. One thing is for certain, time isn't the great healer and most definitely DOES NOT heal all wounds. It is a cliche that should be removed from our lexicon as we discuss grief. The one thing that time does do is exactly what the poem suggests, it fades away the physical nature of Mattie from my mind. I remember his smile, touch, smell, and what he sounds like, or let's say I desperately try to remember. However, time most definitely strips away the clarity of these important images and feelings to me, and this daily struggle I have with these feelings are very upsetting.

As I was driving this morning to an all day professional association board meeting, I was listening to the radio. The station I frequently listen to is in the midst of a two day radiothon, raising money for St. Jude's Hospital. To raise money and bring awareness to the public of the impact and devastation of pediatric cancer, the radio station plays tributes from family members about how they felt when their child was diagnosed with cancer or died from cancer. Hearing this while driving was very intense, mainly because I very much related to everything I was hearing. If Mattie never had cancer, I am not sure I would have gotten the full emotional impact of what I was listening to. After hearing a tribute or two, the station then played a song by Alabama entitled, "I believe there are angels among us." This is a very moving song, and while listening to it, I landed up crying. Not a good thing to be doing while driving on The George Washington Parkway! I attached a link to the song if you would like to hear it. I should warn you that some of the photos in the video may be disturbing to some. Nonetheless, I think the song expresses so many emotions. Mattie was my angel, and through him, he introduced me to Ann and all my amazing Georgetown angels. When I am down, which can happen often, I reflect on these beautiful women who do feats of kindness and love each and every day.

www.youtube.com/watch?v=Ey0HrEvh44c&feature=related

I have been absent from my professional board position since Mattie was diagnosed with cancer. Today was literally my first day back in a way. Everyone was very kind, thoughtful, and gracious with me. I should mention that one board member faithfully reads Mattie's blog, and another made a contribution to the Foundation today! But despite that, I internally feel different. It is almost like I have come back from a war, and have been left with the internal trauma, trauma that others may be able to sense in me, but that only I can feel. Mattie's death has forever changed me and my perspective. Things that seemed important to me, now do not have the same interest or impact. I discussed my feelings with Peter tonight, because I knew he would understand exactly how I felt. After all, despite intense grief, he had to go back to work and actually function. I admit, Peter gives me the luxury of being able to grieve in whatever way I need to, which means not working now. It is hard to have so many emotions inside, and yet put them aside for several hours a day and go to work. My hats off to Peter, I don't know how he does it.

Somehow in my darkest moments Ann and Karen seem to know when to swoop in. Ann called me while I was driving home from my meeting and Karen was e-mailing me while I was home. I consider myself very fortunate that they both try to understand my confusion, my moodiness, and my highs and lows. I guess what it comes down to is the fact that I no longer feel normal, and can not talk about normal every day things. If you talk to me about life and death situations or crises, I can relate quite well, and I am comfortable. Based on what Peter and I endured within the PICU for over a year, this doesn't come to me as a surprise. Intellectually I get it, but emotionally it is hard to accept.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I hope the meetings go well. They can be very exhausting whether or not you have something else on your mind. If it is difficult to stay focused, accept that. Be where you need to be in your heart and in your mind. Fighting yourself just wastes energy so allow the feelings to happen, try not to judge them or yourself. How nice of Kathy to present you the money from the fund raiser personally; you and Mattie have had a tremendous impact on those around you including some who never met you in person. It was lovely of you to be with Ann's daughters for the afternoon and I am sure they enjoyed it as much as you did. I am headed out to the Shenandoah Valley for the weekend and I am not sure I will be able to log on from there but I will be sending you the energy and the peace I find being closer to nature and G-d in the slower, quieter space. I hold you gently in my thoughts."

The second message is from my colleague, Susan, who faithfully reads Mattie's blog. Susan wrote, "Good Morning Vicki! I was SO pleased to hear that you will be attending the AMHCA board meeting this weekend. It just sounded like it might be a little touch of "normalcy" for you, whatever "normalcy" means at this point in life. I always have powerful thoughts and good memories of our March board meetings whether they were in a foot of snow or 70 degree weather - both of which happened during my six years on the board, and I continue to miss that type of professional interaction. I do hope that you feel surrounded by caring people both at the board meeting and through your blog. Gosh, Vicki, I'm already wondering how I'm going to start my mornings next fall after you give up the blog. I have come to count on this "put things into perspective, Susan" check each morning and always wonder how your next day will feel to you. I hope you are well physically, and I wish you the best each day. Have a good meeting, and give my best to the board."

Thursday, March 11, 2010

Thursday, March 11, 2010

Tonight's picture was taken in May of 2007, during Mattie's first and only visit to Dutch Wonderland (a theme park in Pennsylvania). The ironic part is before attending Resurrection Children's Center, Mattie's preschool, Mattie HATED slides. Slides were scary to Mattie, despite my best efforts to sit with him and coax him to try them However, as you can see in the picture, Mattie clearly overcame any apprehension he had about slides. He had a fun time with Peter on the slides and roller coasters that day. Fortunately Mattie took after Peter in this respect, since they both loved adventure and motion.

Poem of the day: Did he meet you like you imagined? by Kim Hodne

Did He meet you like you imagined
Did He lead you home
Was there the bright light
At the end of the tunnel
Is the emptiness gone
Are you never lonely
Is the hole in your heart filled now with joy
Are the struggles over
Is it like the mountaintop
That brought Him so close to you before
Is the light of His face light shining upon you
Are the battles of the mind over
Do you walk with Him
Along the paths and beautiful canyons
Are all the questions answered
Is all the anxiety gone
Do you think of us
The ones left behind
Can you see the ache in our hearts
The tears in our eyes
We feel you close by
In all the Creator’s beauty of Nature
And someday we will know
You’ll both lead us home

On Friday and Saturday, I will be attending all day board meetings, for the American Mental Health Counselors Association. These are the first professional meetings I will be attending since Mattie died. These meetings will either be a wonderful mental distraction or they will wipe me out. At this particular moment, I can't tell which will result. However, those who have experienced intense grief, know very well, that grieving has a real physical component to it. I have never been so sapped of energy as I have been since Mattie's death. Again, it may be hard for others to perceive this energy drain within me, but I can feel it. It is ever present.

I had the opportunity to meet with Kathy Jenkins today. Kathy works at Mattie's school as the girls' lacrosse coach, and I believe Kathy is also the founder of this girls' lacrosse program at the school. My readers may recall that last Sunday, Kathy had a fundraiser for the Mattie Miracle Cancer Foundation. This fundraiser was very successful, and Kathy met me to personally give me the contributions. I am very touched by Kathy's passion, motivation, and dedication to help children with cancer, and to remember Mattie in this way.

I spent the afternoon with Ann's girls, since Ann was on a school field trip with her son. The three of us had a good time together, and it was nice to spend time outside with them. They designed their own treasure hunt games in the yard which were very entertaining and creative. But what completely caught my attention was the fact that the girls like to climb trees. Though I did not share this story with Abigail, Ann's youngest daughter today, I too liked to climb trees when I was her age. My grandmother and mom weren't thrilled with this notion, but as Abigail said today, climbing "soothes the soul." Fascinating expression, and I never thought about it this way! Abigail was proud of her tree climbing skills and she suggested that I take a picture of her so that I could show her parents tonight. Naturally they have seen her climb trees before, but I guess she wanted the moment documented, or perhaps wanted them to know she was thinking of them.

Left: As you can see this is NO small tree. Abigail is on top, and Katie (Ann's oldest daughter) is on the lowest limb, and their neighbor is in the middle.

Right: Look closely, Abigail is actually smiling all the way up there.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Yesterday must have been a good but bittersweet day. I am so delighted you got to spend time with Junko and get a massage; touch is so important and so healing and in our society we often do not touch enough. Frequently, those I work with who are grieving tell me how much they wish to be held or hugged but they've been conditioned not to ask and those around them have been trained not to touch without permission. As a result, we stand alone much more often than we should and we have to find ways to overcome this "deficit". Clearly this was not the case with you and Mattie; most of the pictures of you show you in physical contact with each other. I know you miss this greatly. You and Mattie had such a special relationship and I can see that reflected in the response of his friends (and their parents) to you. As I practice today and reflect on my physical self as well as my spiritual one, I will send my energy to you to help bridge the gap. I hold you gently in my thoughts."

The second message is from my friend and colleague, Nancy. Nancy wrote, "It seems that Tuesday will never be the same for Peter and you. I believe that those of us who love your family and traveled your path, trying to bring some comfort and peace when possible, will view Tuesday as an anniversary too. A few days ago, Marv and I were going through some boxes trying to see if we could make space for newer acquisitions. We came upon a box of books. I went through them and found this book of poetry. It's called "I Touch the Earth, the Earth Touches Me" by Hugh Prather(1972). I had heard of him, yet, never knew how prolific a writer he is. Anyhow, I began reading it and found this excerpt. I felt it resonated with your message yesterday about Charlotte and Mattie, especially making time for Mattie. "I start to do one thing and something else happens 'to divert me.' I resent the influence and try to go back to my original intention. But I am influenced. I am ever influenced. I do not live in a vacuum together with my intentions. I am a relationship. I walk down the road and feel a sudden burst of warmth from the sun: I stop and bask my eyes. I get a letter from John, a nibble from Rufus, a knowing look from a clerk and I am no longer the same. What I just was doesn't quite apply. What I just intended is in the past. This is not a lack of resolve, it is the way life flows: always a new painting, always a new me." Our children are always an influence. You are always Mattie's Mom and Peter, his Dad. I as a Jew have learned that g-d gives the dead, eternal life. I believe that and think that you do too, even though, you are hurting so deeply. As I've said many times, take your time, take care of yourself, and gain strength from your memories and deeds. You are a special lady! You are a special friend! You are a special Mom!"

Wednesday, March 10, 2010

Wednesday, March 10, 2010

Tonight's picture was taken in May of 2007, in Lancaster, PA. Over Memorial Day weekend in 2007, we introduced Mattie to the Amish culture and the beauty of rural Pennsylvania. On our trip, we took Mattie to a pretzel factory, and he actually got to roll the dough and shape it into a pretzel. You can see his creativity in his hand. It was a fun visit, but I am afraid to say, Mattie did not want to taste the finished product! Mattie was always about the process and not necessarily about the product.

Poem of the day: Metamorphosis by Charlie Brown

Was your departure a metamorphosis?
If so my beloved boy
Where are you now?
I like to think of you as
Being everywhere you once were
Enjoying those same things
On a new plane of existence
Where play never ends
You feel no pain
And angels, unlike parents
Never cry.

The last line in tonight's poem captures my attention, "...and angels, unlike parents never cry." It certainly is my utmost hope that Mattie is in heaven and is in great peace. That he is surrounded by our relatives and friends who have died and gone to rest, and there is NO sadness and NO pain around him. As a person who was raised Catholic, I always was taught that God gave up his only son, Jesus, so that we would have eternal life. I have to admit I accepted this belief all my life, but when Mattie developed cancer and then died, I am left wondering. What if there is no heaven? I have mixed feelings about this doubt. On one hand I think any philosophy, religion being included, has and will always be challenged and questioned. Certainly losing a child shatters one's entire belief system, and unfortunately one's spiritual and religious beliefs can some times be affected. But on the other hand, I feel guilt for expressing this because part of believing in God is also having faith even under times of great distress. I very much want to believe that Mattie is at peace, but I am and will always be his mother, and as his mother I guess unless I can see it or feel it for myself, I am just not sure.

Many of my readers have heard me mention my friend, Junko before. Junko's son, Kazu, and Mattie were good buddies. In fact, they met each other during their school's summer camp, a few months before they entered kindergarten. Junko faithfully visited me at Georgetown Hospital. With each visit, she always brought me one of my two favorite things, lobster or shrimp, and naturally chocolate. However, Junko never left me without giving me a back massage. Junko works full-time, and also has two children, but despite all she balanced, she always made time to see me. These acts of kindness and love will never be forgotten. Today, Junko treated me and two other friends to a massage at a lovely hotel in Georgetown. Thinking about myself and caring for myself are not my best traits, but I freely accepted this special treat, as well as connecting with Ellen (Charlotte's mom) and Luda (My "chapel buddy" at Mattie's school. Mattie's school has chapel every Tuesday, and I enjoyed attending each week that Mattie was in kindergarten. Luda and I sat next to each other during the services.) at lunch.

While at lunch, Ellen shared with me several stories about Charlotte. Many of my readers know that Mattie and Charlotte were very close friends, and they were talking marriage. Which of course is hysterical coming from the mouths of six year olds! Ellen told me that in Charlotte's second grade this year, her class did "a star" for the week project. Meaning that each child in the classroom got to be a star for a week. One of the assignments of the "stars" is to bring in a poster depicting things and people who are important them. I gather by sharing this information, classmates can learn more about each other. Well Charlotte felt it was important for her class to know that Mattie was and still is important in her life. So she attached a picture of Mattie to her poster board. I asked Ellen which picture Charlotte selected and she told me she chose the picture of Mattie and Charlotte together by the C&O Canal in Georgetown (I posted the picture for you to see). She did not have to say another word. I remembered that day so vividly, in fact it was one of the last days Mattie and Charlotte were together before Mattie was diagnosed with cancer. Mattie and Charlotte were having a great time together, and I think the picture speaks for itself. As Ellen was talking and reflecting on this day in June of 2007, I landed up crying as did Ellen. In a way, I see that Mattie's closest friends and families are grieving right along with us. Though there are days I feel as if Peter and I are grieving alone, we really are not, and I think this speaks volumes about Mattie and his friends. Children do form lasting and memorable friendships. A bond that can't even be broken in death. The emotion of that alone leaves me speechless. 

This afternoon, I had the chance to spend some time with Ann and her family. Mary (Ann's mom) visited Ann's house today, and as always I had a lovely time with Mary. I told her about my day and what it was like to have a massage. She was very interested in the whole process. When Ann's daughter, Abigail, came home from school her playfulness instantly reminded me of Mattie. In fact, at one point Abigail put her forehead up to mine and was staring into my eyes. This is exactly what Mattie used to do with me quite often. Abigail reminded me of Mattie. The healthy Mattie, the playful and carefree Mattie. NOT the sick with cancer Mattie. Internally I stopped and reflected. These are the tender moments I miss greatly, but always took for granted, thinking I would always have them. All I can say now is I am SO happy I stopped each day and had these moments. Because at the end of the day, I am not reflecting on how much work I got done, or what I accomplished professionally, I am instead thankful that I ALWAYS made time for Mattie. Looking into Abigail's eyes reminded me of the wonderful feeling you get when looking into a child's eyes. Abigail's eyes are happy, young, and innocent, just like Mattie's eyes.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I am glad you got to be out and about with Kristen yesterday. I've been to the gardens and enjoyed the orchids while marveling at the wonderful diversity of life and how it is all interconnected. As you said, each orchid has its own pollinator and way of reproducing itself and even as difficult and strange as some of those are, enough are successful for the species to continue. We too, live in a web of interconnectedness and yet, often we go about totally unaware of our part in the great design that is our life and our community. Mattie's illness and death have certainly brought this much more clearly to my awareness although I would as you have said before, "happily remained ignorant" if it meant he would still be with us. I went into today's practice expecting one thing and was surprised and (truthfully, not very pleased) to be faced with something else. Then I thought of you and decided to find the positive in it and send it your way. As a result what could have been disappointing showed me another possibility to be explored. I hold you gently in my thoughts."

Tuesday, March 9, 2010

Tuesday, March 9, 2010 -- Mattie died 26 weeks ago today.

Tonight's picture was taken in June of 2007. You may consider this an odd picture, but once I explain it, you may get a better feeling for why I snapped it. Each spring, Mattie loved to collect tent moth caterpillars. This tradition started at his preschool and continued through kindergarten. Mattie would acquire at least 10 caterpillars, bring them home in a cup, and expect me to do something with them. I have to admit, unlike Mattie, I never had a fascination with BUGS or anything creepy and crawling. So when he presented me with this treat, my gut reaction was to fling them out into our yard space. But I did not, because I knew he was seriously interested in these caterpillars and I figured what a wonderful way to learn about metamorphosis. So I found a jar, and together we placed the caterpillars in it. Mattie and I then went outside and got some sticks and leaves for the caterpillars to climb and eat. Around our home, we have mostly maple trees. We quickly learned tent moth caterpillars do NOT like maple leaves. So by the process of elimination, we learned that they love to eat oak leaves. Almost every two days, Mattie would put new oak leaves in the jar, because these little fellows had quite an appetite. Mattie loved watching the whole process from the hungry caterpillar stage, to the formation of a cocoon, to the transformation into a moth. Mattie and I would then have a releasing ceremony on our deck, and he waited for this moment with great anticipation each spring. So in tonight's picture, you can see the joy on Mattie's face as he holds his caterpillar jar. In this jar, you may be able to see some of the white thread-like cocoons on the bottom sides of the jar.

Poem of the day: I Wish by Randah R. Hamadeh

Mother, I never imagined you’ll be standing at my grave
Praying, chatting with me, fearless and brave
Mother, I know you are so miserable and sad
And no one can ease your pain, even Dad
I know your happy days with me are gone
Can a mother ever be content after losing a daughter or a son?
Life will forever be to you incomplete
And joyful events will always be bittersweet
Mother, rest assured that I hear your cries
And listen to your aching heart and silent sighs
I wish I can come and wipe away your flowing tears
Including the dry ones that no one but me sees and hears
Oh Mother, I wish I could ease your pain
And for your sake, bring myself back to life again


As tonight's poem asks, "can a mother (and I would also add, "and a father") ever be content after losing a daughter or a son?" The plain and simple answer as you can probably imagine is NO! However, you may be asking why? I can immediately respond to this by saying losing a child is like losing a part of yourself. A part of us died on September 8, and though we physically look intact, and are functioning, inside there is a part of us that is hollowed out, or gone. This empty part, which others can't see, but I assure you is ever present, impairs our ability to see, feel, and experience the things around us like we once did. Besides this empty feeling, with grieving the loss of a child also comes an incredible sense of guilt. Guilt that we survived and Mattie did not. This guilty weight is carried into every interaction we have each day making true happiness or contentment nearly impossible.

Today marks the 26th week of Mattie's death, and for me, Tuesdays will never be the same. Ironically I went into labor on a Tuesday, but Mattie wasn't born until Thursday, April 4, 2002. So Tuesdays seem rather symbolic of Mattie for me, and when I truly allow myself to reflect on this loss, I simply am left perplexed and confused.

I had the pleasure of meeting Mattie's oncology, Kristen today for lunch and a trip to the US Botanical Gardens to see an orchid exhibit. I could tell while Kristen was Mattie's doctor that we had a lot in common. However, despite these commonalities, Kristen always kept our relationship professional. With that said, I think there is a fine line between being professional and being a compassionate and caring person when you are a pediatric oncologist. This is why I most admire Kristen and Aziza (the director of the Lombardi pediatric practice). They are highly competent professionals, but fine human beings first and foremost. Neither one of them was afraid to shed tears with us. A rare sight in the medical profession. But a very human and real response, of which I needed to see and experience.

Kristen is having a baby and looks wonderful. We traded pregnancy stories, and I shared with Kristen that I never wore maternity clothes. I am not sure why, I just bought clothes a size bigger than I was. I guess I was very cognizant of my 50 pound weight gain, and some how I think this affected my choice in clothes. I encouraged Kristen to take a picture of herself pregnant, because someday her child would appreciate it! I know that Mattie loved looking at pictures of me when I was pregnant. He just couldn't get over that he was in my "stomach." Mattie loved hearing about the day he was born, and some of you may recall me mentioning that under times of stress, especially when we learned his cancer spread to his lungs, we sat in the hospital rose garden together. He sat on my lap, and requested to hear the story of the day he was born. It was through the retelling of this story that we somehow were bonded further together, if that were possible. 

I typically do not befriend the medical professionals in my life. But clearly with Kristen (as well as Dr. Bob and Aziza) the nature of the battle we were fighting changed the playing field. I will never forget the fact that Kristen was Mattie's doctor, but when I was out with her today, I felt that I not only could appreciate her for what she did for Mattie, but I got to appreciate her for who she is as a person. We had a good time chatting and exploring the US Botanical Gardens. We soaked up the beauty of the world of orchids, and I learned today that vanilla extract comes from the flower of an orchid. That was news to me. Vanilla is apparently used to reduce anxiety and for nausea.

For those of you interested in orchids, here are some interesting facts about these glorious flowers. Many tropical orchids grow on trees or rocks as air plants. Such plants, called ‘epiphytes,’ are not parasites and use the tree or rocks for support only. Such plants get their nutrients from decaying plant material that lodges in the bark of the tree and water that drips from the tree leaves above. To preserve orchids in the wild, it is essential to protect the insects and birds of the region. Orchids are masters at making such creatures do their bidding, all to insure pollination and reproduction. Some species lure specific insects to them with the scent of food. Others fool male flies by looking like a female fly. A particularly active orchid shoots sticky pollen balls at bees while another is said to intoxicate them so they fall into a bucket of water and, in taking the one path out, pick up pollen on the way. Each orchid is pollinated by a specific insect or bird and it is only rarely that an orchid species can successfully use another bird or insect as pollinator. Because of this specificity, preservation of orchids in the wild depends on preservation of the entire ecosystem. Orchid flowers also come in every conceivable size, from small enough to fit on the nose of President Roosevelt on the United States dime (Platystele stenostachya) to Cattleya gigas which forms flowers between eight and eleven inches across, sometimes in clusters bearing more than half a dozen of these huge flowers at once.

Below are some pictures I captured today on our journey.

Left: You can see the color and size diversity of the orchids.
Right: Check out the root system of this orchid. It is NOT growing in dirt!

Left: Kristen named this orchid, "the Santa Claus Orchid." See if you can see Santa's face!

Right: A very unique orchid, with such tiny and intricate flower blossoms.

I would like to end tonight's posting with two messages. The first one is from Kristen. Kristen wrote, "Vicki, thank you for spending a beautiful afternoon entertaining me with your wit and your wisdom. Peter, I wish you could have joined us. And for you both, know that on this Tuesday and every day I am thinking of you."

The second message is from my friend, Charlie. I read Charlie's message this morning and was deeply touched and honored! Thank you for such a high compliment. Charlie wrote, "You do good deeds almost unconsciously without judging them or looking for payback. In Judaism, we call that person a "mensch." A mensch literally means "a person" in Yiddish, but figuratively it means something much deeper. A mensch is a person with whom you would be happy to befriend and associate with, because you feel genuine in a mensch's presence. A mensch is a highly evolved human being. Menschlichkeit (the art of the mensch) has nothing to do with looks, with wealth, with success or with intellect. A mensch exudes a certain magnetism that attracts us, whether or not words or glances are exchanged. A person is a mensch because he simply makes others feel good. That to me is what you are and why people connect with you the way that they do. I am glad you got to reconnect with Margaret yesterday; those connections are critical for your emotional well being. One of the things you have to do as you help others is remember to take care of yourself as well. As your friend Karen told you, it is all about becoming tuned into yourself as much as you tend to be tuned into others and then doing what is necessary. It may seem an indulgence, but if you are not well, you cannot care for others. I will send you my energy today from practice so that you may use it as it is needed. I hold you gently in my thoughts."

Monday, March 8, 2010

Monday, March 8, 2010

Tonight's picture was taken in March of 2007. Apparently we had snow! Not much, but even with the little bit that was present, Mattie decided to make snow castles on our deck. Mattie loved being outside, it did not matter the temperature. He appreciated and loved the snow, and in addition to designing castles, he felt that each castle needed a hand painted stone. You should note that each of the stones pictured here are stones he collected on our nature walks together! Mattie collected stones and sticks from each walk. I am not sure if they were markers for him of all the times he went exploring, or if he wanted to just capture the moment with a physical remembrance. My hunch, knowing him, was the later. These family moments were important to him! 

Poem of the day: Where? by Charlie Brown

Sometimes I sit and stare

Words fail me
All I can do is feel
The overwhelming emptiness
Of your absence from my life
Every morning I wonder
Will today be better?
Is this a day
When I won't cry?
Does it matter?
I seek you in places
You have been
Your school, your room, your toys
The faces of your friends
But no where do I find you
Until I seek you
In the pain that remains
In my heart

Charlie's poem today is very powerful. Why? Because what it is ultimately saying is that in order to truly feel and find Mattie, I must turn inward. I must confront my feelings and be open to what is in my heart. I assure you it takes great courage to go there each day, and certainly it would be much easier to be numb or to feel indifferent. However, if you knew Mattie and loved him, then you would know that there is no way this could bring about indifference. He had the kind of spirit, soul, personality, and smile that was haunting. Haunting whether alive or dead.
 
My mom sent me this quote today: "Life is not the way it's supposed to be.. It's the way it is.. The way we cope with it, is what makes the difference.” I have definitely learned the hard way that life is NOT the way it is supposed to be, but I must confess I am still trying to figure out how to cope with life, or with what life has left me. Perhaps this is lifelong process, or a process that constantly must be re-examined as our lives evolve. Naturally each of us must cope with daily stressors, but daily stressors are not what I am writing about. I am talking about life altering changes, and I can honestly see how parents who lose a child to cancer could easily choose to cope in a less than healthy or effective manner. It may not be a conscious choice per se, but more like a response that is selected to help protect one from even more pain.

I had the opportunity to have lunch with Margaret, Mattie's first preschool teacher, today. Margaret and I talked for hours on so many things and we enjoyed lunch together in a restaurant that was new for both of us. When Margaret and I are together, time has a way of just flying by, and today was no different. Margaret made a comment to me and then later in the day I received a similar comment from my mom. The comment made me pause and reflect on what they were actually saying, which was that despite my great pain, I never forget others. That I still try to help and support those around me. I am not trying to appear like a good doer (not that this is what they were saying to me), in fact, I don't even realize this is what I am doing. All I seem to know right now is that intensely helping others seems to make me feel like I have a purpose. I naturally I do not want to just "do" without also being able to nurture myself in a time when I need a great deal of nurturing. I am becoming more cognizant of my needs in the process, and this afternoon when I got home I was simply tired. It was a beautiful day out and technically I could have taken a walk, but instead decided to just rest. I thank Karen, my lifetime friend, for helping me this afternoon accept what my body was telling me.

As some of you know, I have been working diligently on the "asks" (which are crucial to outline as we begin to ask for grants and corporate contributions) for our Foundation. As of tonight, Peter posted what I generated to the Mattie Miracle Cancer Foundation website. If you are interested in reading them, you can go to http://www.mattiemiracle.com/ and click on "programs." I was telling Margaret about these "asks" at lunch, and she acknowledged how hard it must have been to sit down and actually put words to my thoughts. Indeed it was very challenging, but on the other hand I have given this a great deal of thought and I want our Foundation to be different, and to provide the services that were sorely missing during Mattie's treatment process.

I would like to end tonight's posting with two messages. The first message is from my mom. My mom wrote, "I thought about how you cope with your great loss every day and all the positive actions and energy you bring to others, and it must be said that you do make a difference in the lives of everyone around you, despite your own personal pain and the psychological battles with despair you fight daily. You manifest the spirit of giving, loving and caring in great abundance and set an example of goodness for the rest of us to follow! Just my thoughts for the day! God Be With Mattie Forever."

The second message if from my friend, Charlie. Charlie wrote, "I was so happy to hear that Mattie's spirit lives on in the fund raising efforts of others. I am sure that Kathy was delighted to see you out there yesterday; as always you have made a new group of Mattie "fans". I am looking forward to the Mattie March in May and connecting with Ann and others who I much admire but rarely see. I am sure you confuse the people at the facility where Mary is now living; while connections between the old and those of other ages were common even fifty years ago, now they are not. Visits tend to be confined to only those who are related to the person who is living in the facility. You are probably the only "non related" visitor who is more than ten years younger than one of the residents. As a result they don't know how to "classify" you. It is a shame that it is that way, especially since the families of many of the residents probably don't live close enough to visit on a regular basis. Our society tends to set things up so we get that result since many of these people were living in senior communities before they went into a care facility. If there are no younger people around to make friends with, how do you make those connections? It makes one want to rethink the voluntary segregation we do while we are still well enough to get out and do things, meet people and make friends. I know Mary appreciates your visits; the truth is that the staff of any facility treats people who have frequent visitors better than those who don't have frequent company from outside. So your good deed is two fold; may the blessing come back to you twice over. I hold you gently in my thoughts."

Sunday, March 7, 2010

Sunday, March 7, 2010

Tonight's picture was taken in May of 2007. Mattie was dressed for his first day of summer camp at Resurrection Children's Center, his preschool! Mattie loved summer camp because it involved all the things he loved the most: playing in the sand, playing with water, and creating! Unlike most children, after three or four hours of camp, Mattie wasn't the least bit tired, he was energized when I picked him up. He was ready to go right back out to the school's playground and jump back into the sand box. Fortunately Mattie had many buddies who enjoyed doing the same things and Mattie developed quite a play group during his summer camp days. I am so happy I allowed Mattie to have this unstructured time, to freely play, have lunch and ice creams with his friends. Having the pressure of a time schedule some times causes more stresses than necessary and is counter productive, especially when children are so young. I look back at these more peaceful days and I realize these moments are the foundations of positive memories. It wasn't important how many activities Mattie was enrolled in or accomplished. What he accomplished with the freedom of time was the opportunity to develop his own interests and close connections with friends.

Poem of the day: Shopping by Lana Golembeski

“May I help you?”
The answer is always “no, thank you.”
And then I say I am fine
When in reality my words are nothing more than lies.
My heart is so weary
Of trying to pretend I am feeling cheery.
Behind those laughing eyes
Lies pain on the face in whose falsehood lies.
Broken heart and broken dreams
A false facade hides in those unheard screams.
Pain no one could ever imagine
Fights a fight that no one can ever win.
“May I help you?” The clerk repeats
And again I say “no” as our eyes meet.
Things are not okay nor will they ever be okay.
Although every night and day in my heart I pray and pray.

This morning I received a call from Tamra (our friend, a SSSAS mom, and MMCF board member). Tamra wanted to let Peter and I know that Kathy Jenkins (SSSAS' Lacrosse coach) was hosting a lacrosse tournament today and at the tournament there would be a fundraiser for The Mattie Miracle Cancer Foundation. I knew that Kathy was thinking of doing this at some point, but I was unaware of when, so this morning when Tamra told me, I was surprised. I quickly got myself together and drove to Mattie's upper school campus to show my support for Kathy's efforts. I had never met Kathy before, but I know she is a big Mattie supporter and avid reader of the blog. I migrated my way to the field, and was able to find Kathy. She instantly knew who I was, and she introduced me to several people who were helping collect money for the Foundation. Tamra and her daughter, Meredith, met me at the field and I explained to Tamra and Kathy that if they decide to host other MMCF fundraising opportunities that the Foundation would be happy to assist them. Peter and I are very grateful to Kathy's determination and dedication to our cause, and I am so happy I had the opportunity to personally thank her today and to see the wonderful work she does with girls' lacrosse at SSSAS.

Later in the afternoon, I went to visit Mary (Ann's mom). Mary was happy to see me. Her new assisted living facility is trying to figure out just who I am. After all I am not her daughter or a relative, but could I really just be her FRIEND? One of the aides on Friday thought I was Mary's niece. I explained to the aide that I am not related to Mary at all, that we are just good friends. Mary piped in and said that she wished we were related because we understand each other, we have a lot in common, and as she told me today, I make her feel special. What I love about Mary is she is honest. There are no pretenses, she calls things as she sees it.

Tonight Peter and I went out for dinner at our local Chinese restaurant. We took Mattie to this restaurant all the time, and as we sat at our usual table, I couldn't help but reflect that someone special was missing from dinner. Mattie always sat between us, usually building Legos. It was at that point, that many mixed emotions hit me. I told Peter that others may try very hard to understand how we are feeling, but in all reality at the end of the day it is only us who truly sit in this pain. When I sit in this realization long enough, I find that this is a very lonely place to be.

I would like to end tonight's posting with a message from my friend, Charlie. Charlie wrote, "I can understand how the conversation about "chick and chuck" turned into something completely hysterical. I have had those sorts of totally absurd conversations with others when we are trying to guess what something might mean and we really have no idea. The things we come up with are pretty creative and often downright silly but it is a wonderful stress reliever. I thought your two dreams were very interesting. The one in which you have a child on your lap who loves you but whose face you cannot see has an interesting interpretation. According to some dream dictionaries, it means you are searching for a part of your identity; perhaps you are trying to find out who you are now that Mattie is no longer physically in your life. Supposedly, dreams about the circus indicate that you have given a wrong impression to others. Perhaps this is a way for you to let people know that you are not as "okay" as you sometimes seem? I do think you also hit it correctly with the contrast between the two of Mattie alive and Mattie gone; that contradiction lives on in your heart. I think it was lovely of Brandon and his family to do the mass for Mattie; what a special way to honor the friendship they had. There are many people who were with you during Mattie's battle with cancer; they remain not just because of Mattie (although he certainly is a part of that) but because of you and Peter as well. You are such special people; the connections you forge are lasting. I hope the energy I found in my practice today helps you to continue to navigate the path as you go about your day. I hold you gently in my thoughts."

Saturday, March 6, 2010

Saturday, March 6, 2010

Tonight's picture was taken in March of 2007. Mattie went on an adventure to Key West, FL with Peter's parents, Peter, and I. The sun felt good to Mattie, and I captured him taking in the rays through his hands! It is ironic, when Mattie wanted to absorb his environment completely, his hands and fingers would always raise up, almost like antenna trying to hone in on specific sights, sounds, and smells. Mattie did this with his hands even when he was a couple of months old. Peter and I reflected today how Mattie would move his hands and fingers to the beat of music when he was only a couple of months old. He would raise his arms, and like you can picture an octopus moving its tentacles in the water to understand its surrounding, Mattie's fingers and hands would have the same rhythmic glide and wave! 

Poem of the day: A Poem from Kim H. to Trevor


I miss you more than you'll ever know
The world is not the same without you here
Sadness washes over me without a moment's notice
Your presence can be so clear
I wish I could be that Mom again
The one who answered every call
And laughed at all your stories
Who lent the understanding ear
I loved being there for you
I looked forward to all that lay ahead
I wanted the best for you
I lost such a good friend
I still long to see that bright smile
That lit up those Irish eyes
I want to feel the strong hug
I want to hear your contagious laugh
The wait seems so long indeed
Until I can see you again
I just want to be that Mom again
The one who loved you more than you'll ever know

"To be that mom again" as the poem implies is something that I reflect on each and every day. Being Mattie's mom was a very important and vital part of my life. Yes I achieved a lot of things prior to having Mattie, but some how my greatest accomplishment was having Mattie and seeing him develop from a baby, through the toddler years, to his early childhood stages. In a way, seven years went very quickly and of course one doesn't think when raising a child that this will be a finite process. There are days I look at pictures of Mattie and I together and I can't imagine this amazing little person is no longer with me. Coming to terms with this is hard on the conscious level, but I think I am plagued with this acceptance even in my sleep. I had two very unusual dreams last night. In the first dream I distinctly remember there was a little boy sitting on my lap. The boy was laughing, hugging, and kissing me, and I clearly was calling him my son, but I couldn't see his face at all. This is not unlike many of my other dreams in which I think Mattie is present, but I can't identify him. The second dream in this sequence last night took place at a circus like environment. However, the audience members were the participants. I am sitting in the audience between Ann and Peter and I remember jumping up in front of the entire audience to tell them the story of Mattie, who died from cancer. I find it so interesting that in one dream I perceive Mattie to be alive, and the following dream, I am explaining the reality of my situation. Seems to reflect the conflict I am living.

I am honored to learn that many of Mattie's nurses and support staff still keep up with our blog. I could look at this from a very academic standpoint, and say that perhaps they are interested in understanding how parents learn to cope with the loss of their child. But I know better. Certainly this may be a factor, but the real reason, I imagine, is because we connected with these extraordinary individuals while Mattie battled cancer. When you live in a PICU, the nurses become your family. This connection maybe perceived to end once treatment stops, but it really doesn't. It doesn't because the type of bond you make under the most dire circumstances is powerful and real. I will never forget any of our nurses, and as Jenn (one of Mattie's favorite Bostonian nurses) wrote to us today, it only confirmed the feelings I carry within my heart each day. So I say a BIG thank you to our Georgetown angels! Also for those of you interested Jenny (one of Mattie's art therapists) is NOT moving to Oregon, she is moving to Southern Virginia and eventually Colorado. I have no idea why Oregon popped into my head.

Peter and I had a funny morning. On Thursday while helping Ann go through Mary's things, I came across a box with a silver coffee serving set in it. Mary received this set as a wedding gift and kept it all these years. Naturally the set was VERY tarnished. I asked Ann if I could bring it home and try to restore it. When I brought it home, Peter was fascinated by the box the set was stored in. The front of the box has prints of chickens and roosters on it, and it says, "chick n chuck." Well this morning, while I was cleaning the set, Peter and I were having a good laugh at trying to guess what the "chick n chuck" stood for. Clearly the silver set did not come in this box originally. We were guessing all sorts of things from a child's game, to an egg carton, to a small appliance came in this box. We debated this for at least 30 minutes, until I had Peter google "chick n chuck." All we could determine was this was a company based out of Florida that operated in the 1950s, but is no longer an operational company. We couldn't determine what the company actually did. So I feel the only one who could possible solve this box mystery is Mary. This may not sound very funny, but if you could hear Peter and I talking about this, you would see it was an hysterical dialogue. It is the oddest things that can bring about laughter some times.

This afternoon, Peter and I headed to Prince Frederick, MD. We were invited by Brandon (Mattie's big buddy) and his parents to a mass at their church in honor of Mattie. It was a very thoughtful gesture, that seems like a beautiful way to remember Mattie, especially since his birthday is less than a month away. We had a lovely time connecting over dinner, and what is very clear to me is that once you have dealt with cancer you are profoundly changed. Thankfully Brandon continues to have no evidence of disease, however, I think it is impossible to have a child who once had cancer and not worry about whether or when it will reoccur. It is the constant fear one is forced to live with. We shared all sorts of stories tonight about Brandon and Mattie's treatments, and we also reflected on the day Mattie died. Brandon actually came to the hospital to say good bye to Mattie. Understand that Brandon was 18 years old, and walked into a room in which his friend was lying in bed dead. Most adults haven't experienced seeing a dead body, much less the body of some one close to them. Therefore, you can only imagine the great courage and love it took for Brandon to sit in the room with us. Also factor in the fact that Mattie died of cancer, something that Brandon had just battled. Brandon will always hold a special place in our heart, and I believe Mattie had a profound impact on Brandon as well.

Later tonight, I received a text message from Ann. She was attending the SSSAS (Mattie's school) auction. She wanted me to know that to the auction she was wearing the bug pin Mattie gave her for mother's day. Mattie picked this pin out for Ann at the hospital. Mainly because he knew it would freak her out, and he loved seeing her react to his antics. Despite the pin depicting a bug, it is actually a pretty pin, and I guess hearing that she wore it tonight made me smile. Between the mass in honor of Mattie and hearing about the bug pin, I felt as if Mattie was being remembered by those he cared very much about.

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I don't know how you do it; to pull yourself up and go out and do what is required, even while you are ill is the true measure of a friend. I know how talented you are at arranging things; I am sure that Mary and Ann appreciated your efforts to help make Mary's new space comfortable. It is disconcerting to be in a new place whether we are old or young and to have familiar faces around all day while we adjust is a blessing. I hope Mary is happy in her new setting and is able to make friends and feel comfortable; all that takes time though. It's funny how we forget that, even though most of us have been through it at least a few times at camp, at college, at a new school...we wonder how others will regard us, will they be accepting or consider us too different to be able to connect with? I hope Mary has found a place where she can make that connection. I know you are having trouble these days finding a reason to get up each morning; some days people feel that even with children in the house, but when they are there, you don't have a choice and once up and around, you keep going. I don't know what will eventually "substitute" in that way for Mattie but I do hope you find something that is meaningful enough for you to want to live again each day. I will be practicing today with a group and I will send my energy to you to help you in your search. I hold you gently in my thoughts."
 
The second message is from one of Mattie's HEM/ONC nurses. Mattie instantly got to know Jenn one evening when he invited her into his hospital room to exercise to Jerry and Nancy's music. Jenn was a good sport, and Mattie commented to her that she was the only one in the group of us that followed his instructions very well! Jenn wrote, "There's no doubt in my mind you did a GREAT job of transforming Mary's room, because I remember how amazing Mattie's room in the C52 would always look once you were done decorating each admission! I hope you and Peter are doing well, my prayers are with you!"