Thank You Thank You Thank You

I don't know why I haven't written in a week or so...last week was such an amazing week. I attended two Heartworks meetings, one in Long Valley, NJ and then myself and two other Heartworkers, Holly and Marianne drove up to Barrington, Rhode Island to facilitate Amy's group and see Charlie during his second week of treatments. By the way, he is running around like a mad man and spends more time in hockey and lacrosse gear than any boy I have ever met. While Amy is taking care of Charlie and his brothers, her friends are going to step up and run Heartworks until she feels ready to step back into her role as leader. Amy started her group 4 years ago and it was an incredible experience to witness the 37 women who showed up for the meeting- their love for Amy's familiy was almost palpable and for as much as I say I don't get nervous leading meetings, I was nervous for this one. To guide this group of women through the process of what it means to be in Heartworks, just felt so urgent now, given that Amy is actually living through a child undergoing radiation and chemotherapy. The most amazing part of the night was that by the time we lit the prayer candles, not even half way through the meeting, I felt as if I had known this circle of women my entire life. This is what happens when the walls are knocked down and women get real with themsleves and each other. We stayed until 1:00 in the morning and I got to hear Amy's laugh and when I asked her if there was any part of the meeting she wanted to participate in or lead, she said "The gratitude exercise". And so there she was, a mother living out her worst nightmare... leading a mantra of  "THANK YOU, THANK YOU, THANK YOU" - words can not express the feeling in that room.
Inbetween these two meetings we sent our friend Katie Meyler back to Liberia to put 100 more girls in school thanks to her fundraising efforts while she was home. Monday night my girls and I spent time with my neighbor's, the Hoyt family, selling lemonade to raise money for pediatric cancer research. They held this lemonade stand on the night bofore they left for Boston for 5 year old Campbell to start 6 months of treatment there for the tumor in her brain. I also took my girls to the pool, had a date with my husband, hung out with my mom and sisters and friends. It was a full week...full of challenges, love, inspiration, fear, faith and hope. I am leaving in the morning to go back to see Chalie again and I know I am blessed to have access to such love in my life. My life is full and I am grateful. THANK YOU, THANK YOU, THANK YOU.

Visiting the Past

Last night I drove 2 miles to a restaraunt in my town and walked up a set of stairs and straight into the past. Old friends, childhood companians, stood in front of me with legal glasses of wine in their hands and a few wrinkles on their faces (mine too). As I made my way around the room at this memorial dinner for Ranjan Sinha, a high school classmate who recently passed away, what I noticed most is that noone's eyes have changed.
styles, yes
body types, yes
 hair color, yes
 eyes, no.
 I saw my old friend Tracey...one of my BFFs from childhood. It was one of those homecomings...one of those "where have you been for 25 years and how have we not spoken? What is your husband's name? Are you happy? do you work? Do you love what you do? Can you sit for a hundred years and catch me up? When did you meet him? What flowers did you have at your wedding? Do you drink diet Coke, I do, and I wish I could stop, what are your friends like? Do you remember this, that and the other thing??? I love you even though we haven't spoken in spoken in forever"

Our friend Patty wasn't there from Florida and we missed her...My old friend Sandy wasn't there either but we spoke about both and several others that couldn't make the trip. We ate dinner, caught up and watched a slide show of Ranjan running around different tracks all over the East Coast. The sighs were loud and authentic when candid pictures appeared of coaches Mark Wetmore and Ed Mather sitting at the Penn Relays or on the track at Bernards High School. Most of these shots caught them in the middle of a lecture, and I knew that even the photographer was changed by what was being said as he or she was taking the picture.
Stories were shared about my father...how he helped people through hard times, how he would sit at "the wall " at the high school and say "What you are experiencing you here, today, will affect you for the rest of your life and you will always remember it." And I witnessed over and over again how right he was. I pictured him there in the room with us, in a tie and jacket, with a glass of water in his hand looking around, smiling and nodding his head so thrilled to see the runners gathered there. How proud he would have been of everyone...not because of any business titles or so called successes....but because we showed up 25 years later and cried and hugged each other and were present with the glories and regrets of the past.

When I saw the lack of ego in this group, the lack of needing to show off or be something other than we are...I thought of so many people that I have met  in my adult life that are so imprisoned by their image and what they want others to think of them, that it is difficult  to get to know who they actually are. It felt to me, that last night, we all showed up as we are...fit, not-that fit anymore, married, divorced, single, "successful", struggling, happy, depressed, satisfied, craving more, better off, less off than we were in the last time we saw each other in the mid eighties. And I know that the truth is that all of us are a little bit of all of these things. I went the whole night pretty much not knowing what anyone does for a living. I did not talk to one person about the car they drive or where they vacation, what school their children go to or what their job title is. This is rare for a cocktail party in my town and I had a quiet smile on my face even through the sad parts of the evening. Because every person there was so beautiful in my eyes. I held hands longer than I would normally do, hugged tighter and sat closer to those around me. It was a night of authentic (there's that word again) relationships, even with the people I never hung out with much in high school. I don't know if this was about Ranjan's death or something else. Death, illness and struggle, as resistant to these things as we are, seem to be what allows human beings to show up "uncovered" in a way that nothing else does. I can not help but think that this is part of the plan. That it is the struggles, the losses that brings us to crave a connection to God and other people in a way the easy phases of life don't enable us to do.

We met this morning at "the wall" at BHS and we had bagels and some of us went for a run...the rest of us took pictures of those who ran :). It is safe to say, because I live around the corner in the house I grew up in, that I drive past the high school every day. And every day I think about that wall and the ghosts that gathered there all those years ago to stretch and talk and run. Not only run from the wall, but perhaps from all the things that were happening in our young lives that we probably didn't know how to talk about. But last night, as teammates remembered Ranjan, they spoke about their the isolation they felt during those years, how they felt like an outsider and Ranjan made things easier for them during high school. I know he was brillant, I know he was fast, I know he was a hottie...but at the end of my life, I don't know if there would be a better compliment, a better expression I would want to represent my life, than I was the type of person who made someone's life easier while they were in high school. This was a theme in remembering Ranjan Sinha.
When I drive by the high school tomorrow morning on the way to the grocery store, the ghosts will be a little more alive for me, maybe a little slower than they used to be..but perfect all the same. Thanks for a great weekend.

Transformation Make Your Home in Me by Amy Ames

The words I have not been able to type about my 9 year old Godson's tumor are Malignant Glioma. Charlie's type of brain cancer is very rare. His mother, my BFF Amy, is the youngest of 7 kids. I think her oldest sibling Sue must be 53 by now. This family has never experienced a trauma before. They have been blessed by a lack of car accidents, illness and tragedy. I tell you this because I want to give you a reference for the entry below. Amy started her own Heartworks group in Barrington, RI four years ago. She has dedicated her life to reaching out to families that expereince things that she has not, until now,  gone through in her own life. Amy has a gift of being present for you in crisis, even though she has not been there herself.

On April 23rd she posted the following article on her blog. She wrote it because she had heard of a woman in town getting a cancer diagnosis. It was Easter week and she did not want to write about "fluff" so she said a prayer to give her some clarity about what was happening for this woman she had just heard about. She called me shortly after she posted it saying "I'm such an idiot!! Now everyone thinks I have cancer!! I was writing it from the perspective of the body, the universal body, not my own!" and we laughed hysterically that these ideas and words just came to her and so she wrote them, posted them and never explained the "why" or that it was not about her. Life in her house this past Easter was good, and she knew it. Amy has the awareness to be grateful for "ordinary days" and she was.

Then on May 18th they were woken up in the middle of night by Charlie having  a seizure and falling down the stairs. Two weeks later they removed  a tumor from his brain. On June 24th Amy and Garrett got a phone call that the tumor is malignant and a year of treatment is necessary...so you can call the article below Mother's Intuition, you could call it crazy coincidence. I believe, Amy believes, it was God giving her an understanding of what was growing in Charlie's brain at the time that she wrote this. She just didn't know it yet. I post this today because he started a radiation on Monday and those of us who love him are requesting that everytime you think about Charlie, please turn it into a prayer. The following is an explanation of how his mother viewed his tumor before it was even discovered and we must all follow in praying for a miracle of healthy cells to grow and grow in little Charlie's brain. Please read below and pass it on to anyone you know living with cancer. We believe these words to be true, and Amy was the vehicle through which they were delivered.

Transformation Make Your Home In Me

A prayer for the darkness of a diagnosis.

Little spot, I heard you were here. I saw you there on the white screen. You are in me, but not me.  I don’t know you, like I know the backs of my hands or every line on my face.

They say you are a part of me now and that you have made yourself known. The kids are crying, worried, losing sleep.   Your hearty handshake of "hello" has not loosened its grip on my stomach.  And my breath! My breath is heavy.  Is that because you've already made yourself known to the rest of me? Trying to show all parts, who's the boss?
I don't know you but you are a part of me now. Like an uninvited guest barging your way into my daily affairs.  Appointments, white shoes, white coats.  Tests, tests and more tests. Waiting, waiting and more waiting. The only difference today from yesterday is a few syllables a tongue mixed with an exhale that uttered your name.
I feel fine, I feel fine. Perhaps you existed on the slide before the shutter closed? An 8.2 millimeter smudge? There must be some sort of mix-up.  I feel fine. I feel fine.
Where did you come from? The air in which I breathe?  The food I swallowed?  A hundred inconveniences? A lifetime of angry frustration?  Will I ever know?
They say you will grow. They say you might spread.  They need to figure you out. I need to figure you out.
And when I look, you are so small!  And I am so great! I am so much more than 8.2mm.  A daughter, a mother, a wife, a grandmother, a teacher, a nurse, a friend.  With so much love yet to give.  So much more of life to live.
So now you are in me and a part of me, a part of my cellular makeup that has been wounded. Like a cut on my leg, or a bruise on my arm,  I will nurse you back to health. That's what I do, that's who I am.
I will care for you.  Every cell will care for you. There are enough of them to do so. They shall dance around you.
Will you let us in? Will our love and our nurturing be enough to transform your attacking nature?
Let us walk this road of uncertainty together at least. Let us resist our need for answers.  Let us breathe life in and let love out.  Every moment of every day. Because you are in me and now a part of me.
Transformation make your home in me.

Be Not Afraid

So we were all on the beach watching the fireworks tonight-and all of a sudden Eddie says "shhhh, Megan...listen" and I hear female voices singing "Be Not Afraid" on the beach. I could hardly believe it, since I have been singing this very song over and over and over again in my head since I blogged about it on Sunday. I sang it when I felt sick going to bed last night, again in the middle of the night when I woke up wondering if Amy and Garrett were able to sleep, and a bunch again today at the parade every time I saw a little boy waving a flag and my heart was gripped with fear of what the next year will be like for Charlie. And so we were sitting on the beach and we hear the song being sung...so of course I have to go right over to the group of women- they are just like me and my friends, sitting having their wine and wanted to sing "Be Not Afraid"- so then I tell them about Charlie, about my BFF Amy and they all take out thier phones to type "Charlie Ames" on their memo pad so they can pray for him....God is present... Amy's brother Matt emailed me last week that "God knows Charlie's name"... I know this is true- I got my weekend theme song sang to me by a group of random women on the beach...of course God would show himself to me in this way, so that I can blog it to you and you know as well to not be afraid, He goes before you always....amazing.

July 4, 2011

I am sitting at the beach, as I have done for the past ten 4th of Julys... I am thinking about Amy and Garrett being on a deck on Cape Cod, in a similar scene, hanging out with Garrett's family, having a drink on a beautiful summer night. But this years holiday falls 7 days before they start a year of chemotherapy and radiation for Charlie....hard to grasp this reality with the sounds of fireworks going off over the bay and nieces and nephews hula hooping and running around with sparklers. I think about Amy's 6 siblings and parents, Garrett's parents, Amy and Garrett's college and high school friends, Their Barrington friends, all in different areas of the country, having a drink on a deck somewhere and wondering why  the beer they are drinking tastes different than last year's. It is because this 4th of July, if you love Charlie Ames, everything is different.

Leaving for the Beach, Still Not Writing...

I am leaving to go to the beach for a few days. I know I haven't written since the last update about Charlie...I just haven't been able to. I will write again when I get back from the beach. For now let me say that I am so grateful to God for the grace to carry us through the worst of things. "Be not afraid, I go before you always" I believe this, I know Amy believes this and I pray that her human heart can stay open enough to feel this truth every moment, as Charlie starts a year of chemotherapy and radiation of July 11th. I love my friend. I love my Godson. That's all for now.