…on the power of words

As yoga teachers, for the most part, we deliver our lessons form what we have experienced. Both physically in our body through our asana practice translating from our bones to yours on the mat as well as through sharing, through listening to our students – seeing them – and holding space for them when they need it. We teach anatomy, we teach philosophy, we teach the sutras and ahimsa. At GGY we teach from the heart.

In our Teacher Training Program we shine the flashlight, for each of our Leaders – to illuminate what we have seen in ourselves, to walk them down the path of healing, of discovering and allow them to shed, to let go, to heal. To close chapters and begin anew without the heavy hearted baggage from the past. They learn to stand powerfully, wholly, unwavering, amongst one of the most unconditional communities I know.  It’s a choice we all have, it’s right there in front of us, but sometimes we can’t see through the muck. This work, along with traditional curriculum has uncovered uninhibited voices, that speak from the heart. Their filters are clear, they can see from love – versus pain, or fear, or whatever was blocking their sun. Once you are exposed to that light, there’s no turning back. It’s a way of life, self inquiry, a process. I promise you in this type of living #themagicneverends. We are never done, never enlightened, never perfect – no matter how many a-ha moments we have. There’s always more thank God, there’s always more. This year in GGY Teacher Training – the work you all did – well it “did me’

The last several weeks, I’ve been working from home – in a sense, on my own personal healing and discovery. It’s been messy, tearful, and it’s been a huge wake up call for me and what I need in my life. I’ve stepped away from the studios, from my hobbies, rolled up my mat and just sat in it. stewed. I found solace in a very selected few, walked in circles, numbed out and just got stuck. Crazy how one can still manage to have fun in all of that, right?

I’ve heard somewhere in psychology that when you lose a spouse in any way, divorce, death, whatever – all the things they “fixed” in you, all the wounds they healed, reopen and ooze forth tenfold. Gaping holes waiting to be plugged. From this place we seek relationships that validate, overcommit to feel needed, and often find motivation in approval. It’s a dark road, it’s exhausting and typically ends with me feeling unfulfilled. I’ve fought for things that I thought would fix it, pointed fingers, assumed – or didn’t, and still I was coming up empty.

Until I saw it. Until I heard myself begging for the same thing, as I had in my lifetime before. “You are important. You are good enough. You are valued. You make a difference” Sometimes it’s as simple as that. Why can’t we see it in ourselves?

One of the biggest gifts I have ever gotten in my life, came in the unexpected form of Dean’s Eulogy. Not a surprise, Peter is a magnificent writer and spent years making sure it was right. In his own grief, he somehow found the courage to convey something Dean never could. All these years later, he assured me how much I was loved. I’ve read it over and over, trying to “get flat” with all that he said – as if that is even possible. It’s a gift bigger than flowers, more valuable than diamonds and speaks louder than a million songs. Those words will carry me forever.

Danielle LaPorte posted a video last week – a Father’s Day commercial of sorts. It came with urgency, and to me was a no brainer of a practice we should take on in all aspects of our life. Not just with our fathers, but with every single person we love. “What do you love about me? How do I make you proud?” Watch it – go ahead, try not to cry. I dare you. Then wipe away those tears, make a call, write a letter, or better yet do it in person. Use your words, for God’s sake, use your words.

I have so many thoughts on marriage and relationships, having built one for so many years. They are work, they are worth it and sometimes they are the catalyst for digging deeper to get to the root. The best ones are honest, and are trusting, and able to hold up to the surface dirt, until you can see through the muck. Funny, because they don’t really need the words – in your heart you know, yet somehow we still long to hear them.

I thank God for my people, who listen endlessly – to my talking. To my work and my working it out. I thank God for relationships that come when you need them, that don’t judge, and just let you be. For people who really know me, and no matter how many times I look for that rescue, keep me neck deep in doing the work. To the I miss you’s and the I love you’s I hear you and thank you. This life is a crazy road for sure.

In these a-ha moments I can see the light. I can begin to uncover the why behind the things that I do. I can acknowledge them, connect the dots with them and then release them from my being. I can break cycles, and share lessons, so that others can do the same. I can be the catalyst for the conversation. The reminder that gratitude unspoken is wasted and that if we all stop playing games, holding grudges, holding out and ask for what we need – use our words. Life can be so much better.

Lately my own words are coming back, all the lessons remembered. I’m beginning to feel my light once again. Life is all here in front of me, I know it and I’ll be back at it again for sure. Most poignantly today, as I am closing in quickly on this 43rd year I know this: I am important I am valued I make a difference I am a teacher and the best thing, I know I am loved.

oh love.

imageCrazy how time is flying by.

For a while there it seemed as though time was standing still.

Sitting here in the sunny spot in my kitchen  I have a photo of the girls – smack dab ahead. Often when I look into the faces of my girls  – I am boldly reminded of our wonderful life. I see their younger self, and remember them as if it were yesterday. I swear it’s nearly impossible to look at this photo of my children and not want to drive to their school right now, just to tell them how much I love every stitch of their being and then send them back into to class.

I’m like that.

I’m a lover.

I love easily, I love hard, I love completely. It’s exhausting sometimes, I know

I love out loud – no downside to that, no matter what anyone says.

It’s both my superpower and my kryptonite.

there’s first love and

passionate love, motherly love

unrequited love

loving so much it hurts – in a good way. Like it’s palpable – pretend you were shot, fall on the floor roll around kind of love.

summer love – a favorite – sun kissed, top down, tunes on.  Probably on my non-negotiable list – someone who really gets that.

transitional love – the most gentile.

toxic love

ridiculously distracting love – dangerous.

familial love – unconditional no matter how many times you fuck up, or cancel, or cry wolf in the middle of a Monday. Could be blood, or by the hands of God they are in your life. I’d be lost without these people, and completely isolated probably.

But today, June 8th I am especially reminded of married love.

Married love ebbs and flows.

It assumes what you need

It predicts

It’s exhausting at times.

Married love calls you out, but will stand by your side no matter what.

It’s comfortable

It’s fiery

It’s compromise and long late nights

It’s firm in foundation, often needing no words.

It’s parental

It’s honest – always.

It takes work, a lot of work.

It’s grateful, acknowledges without reason – if not just finally half a life later.

It’s settled. In a good way.

It dances, holds doors, carries bags, lets you enter a room first.

It holds you hair up when you need it and always stands behind you walking to communion. – funny, I know, but also non-negotiable.

It’s void of ego.

It’s every love song.

It’s the sun

and the moon

and the stars.

Today marks nineteen years from when I walked down the aisle  (was I supposed to stop counting at 17?) It was a beautiful day, although sweltering hot, but I’m a summer girl and a sucker for rose gardens.

I was 22. I had a honeymoon birthday, and we threw the exact party we wanted to throw. We were married in the Manner of Friends – Quaker Tradition, and our loved ones sent us off into “happily ever after” land with an evening of toasts, and quotes, and readings from the heart.

I didn’t have a crystal ball, I wasn’t sure it would work out, but I went forward down that path with a heart full of hope and reckless abandon. It wasn’t easy and I’m not sure who won in the end, but it was a deep, and all encompassing back pocket kind of love. I’ve shared many times there is no silver lining to losing your spouse, especially when I look at my kids, but without that Cancer, I am confident, I would never have known such love.

I’ve carried that energy forward with me, and it’s like flying first class, you can’t go back. I’t’s allowed my to listen to my heart, take care of myself, find more easeful ways and just take it in. It’s been raucous and funny, fall down and late night. It’s been quiet, and vulnerable and brave. It’s been proofreading and carpooling. It’s been dropping off lunches, watching track meets and days on the fields. It’s been Grace. Truly. It’s been Grace.

I’m not sure what the second half of my life holds, and thats a tough one for me for sure. What I do know is that I am happy, I am healthy, I am sitting in the breeze and after a weekend filled with some of my favorite people. I know that I know love.

There’s no sting today, no anguish, no tears. Just a reflection of what was, an appreciation of what is, and a big bold spirit on the rise. Inspired and confident – that if I follow my heart with the best of intentions, somehow the path will unfold.

Love big today.

Listen to your heart.

It just knows.

I don’t know – it must’ve been the roses…

IMG_9569It’s through the undoing of the world, layer by layer that we get to the root of our love. Only then in our pure vulnerability, can we truly see what’s important.

Car rides are great for discussions, especially long ones, where nobody can escape, where there’s no easy distraction.

Last weekend – we had a good one. Religion. Beliefs. Afterlife. Lessons.

It’s a touchy subject, when you lose someone you love. It never seems fair, there’s most often no explaining it, especially when I look at my children. I can talk away about “a reason for everything” the knowledge I have deep down inside that we truly are not in charge, but none of it makes sense when it comes to the kids and the fact that they lost their dad.

What I do know, and what I’m so blessed to have had were the 4+ years of love when nothing else mattered.

Sure the first 13 were great, the honeymoon phase, the new baby years, the trips, the summers and the being with friends. The hoping and dreaming of a long life ahead, of watching our girls grow and living the dream. Of buying a beach house. Of navigating uncharted territory. Together. Forever. Amen.

But those four years of fighting, of living, of loving bigger and deeper than I had ever imagined, that was the magic, the Grace. That was the one sliver of silver lining through it all. The stuff fairytales are made of.

Every marriage has its ups and downs, it’s ebb and flow, it’s mistakes it’s lessons and sometimes it’s heartache. Every relationship, it’s disfunction, it’s quarrels, it’s nit picky “did you take the trash out??!!” But those four years we were solid, a team, a force of what is real and good in love. No petty arguments, no blame. Those four years – a gift of pure love. Family focused, friend centered, God embraced and guided. And for that, I am truly grateful.

As I opened my calendar today – I noticed the note – wishfully marked on Sunday. “Time to Celebrate – Fighting the Fight.” Dean was hopeful – and optimistic – always. Sunday would be six years from his diagnosis. A day I will never forget. A night I clearly remember saying to myself as I laid down to rest. “This is the end of my life as I know it.”

This note, a reminder of how fleeting our time can be. Of how important it is to hold back nothing, in relationships in connecting and most especially – in love. All cards on the table. No games, no rules. It’s risky for sure. Peeling back all the layers, and existing from a place of love. Heart centered. Wide open. Nothing to lose.

This weekend, we will live, we will love and we will celebrate life – in a house in the Poconos with dear friends. Their own dream, their own fairytale, so generously shared, we’ll cook, and drink wine, tell stories, solve problems, and watch from afar the third generation of friends sharing their lives.

This weekend – this Valentines Day, that is my wish for you. Live with those you love as if there’s no tomorrow. See them, really see them. Appreciate their gift in your life, for just one day – don’t sweat the small stuff. Don’t worry. Don’t argue. Don’t put each other down. We have most of our life to live in the norm, this weekend – soften. Rediscover what it means to come from love, to see through untarnished eyes. Because in the end, that’s all that matters, in the end we should all know true love.

Monday, Monday…

0b712aee4e58799c5702168fd62d7f66This one really struck me today. Nothing like a rainy Monday at a clean desk, after a full weekend of exactly what I love to get me in thinking. Plus my writing playlist is just rediculous. Actually I think it might’ve started sitting on Lea’s counter Thursday night, either way.

The New Year seems to have brought me a deeper sense of grounding and longer moments of “I think I just might be OK, I may survive this.” Although at times, it feels like new levels of grief, but in very short bursts, so that’s an improvement. It’s hard to fathom that a year and a half later this is all still unfolding.

Christmas was a process. A constant up and down, for all of us. We survived, had some magnificent surprises, and have a clearer picture of how to approach all that holiday stuff moving forward. I sent half the cards that I intended to this season, so if you didn’t get one, I either don’t know any part of your address by memory, or you are in the last third of the alphabet. That was something that went out the window with Dean’s diagnosis, the urgency and need to do everything “right” at Christmastime, and although it’s left a stack on my desk, it’s a welcomed change for sure.

The last few months I’ve learned to know when it’s real grief versus getting stuck. I can say with surety, when it’s real, its real. I’m just trying to figure out what to take from those moments, other than the energy moving through my body. Maybe that’s what it is to feel someone’s presence. It’s been the biggest gift of my yoga practice lately, an intuitive tunnel – straight to the other side. Crazy really.

I understand what’s nurturing feel good, versus escape – which I can see would be a very slippery slope to most, it’s an easily blurred line. I am blessed to be surrounded with a family of people, who let me go, and reel me back in. It’s something Dean was very very good at. Letting me flutter – a much appreciated super power.

Fairytale Land is great, the running and traveling, front row, late nights, silly summer outside dinners, beach days way past sundown, and yoga for days on end. Everything that I do to FEEL alive. I love that world, and I am a champion of justification, so there’s that. But Reality has been pretty OK lately too. This weekend in particular – lots of down time, kid time, cleaning out, dinner, music, gathering our beautiful teachers, breaking bread and a wonderfully “normalish” sunday complete with meatballs, football, good people and the Golden Globes in bed with my shorties. Glimpses of possibility and a familiar ease to life – a balance between my many worlds. home.

I’ve had the space to connect and reconnect with so many, slowly, easing my way back in to the swing of things. Back to the more familiar me. Thank you for your love and patience. Really truly, I don’t know what I would do without you. It’s been an incredible journey.

Heading into this year with my feet on the ground a bit. It feels good. My big focus for the first quarter will be developing the studio, our Fishtown Community and an excellence of balance with the girls (which right now feels like some concentrated travel time, somewhere sunny, sometime soon) more writing and more reading, replacing the heater and finishing the dining room. Funny list, right? It seems I am moving forward with a greater understanding that something new is being born, for all of us – and it feels nice.

Looking forward to many good days to come, and truly wishing you all a New Year filled with magic. May even your rainy days be bright. x

stop the madness! (after all, you can’t take it with you)

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As I wake here on the other side of the earth, on a different day than I know, to the sound of the pounding surf and the sweet smell of frangipani, it’s hard to fathom you not here. Here with us, on the other side of the world – with the girls, here to celebrate Christmas in a place we knew we’d return. I imagined walking the beach and getting to say goodbye one last time, to the place that brought so much magic to our lives. To a place that opened our eyes to what is possible in ones life if we only allowed ourselves to dream bigger than the moon and farther than the stars -to the people that showed us how to envision and achieve what seemed only a fairy tale, and are now here to hold the space as we miss you together.

It’s hard to fight the tears this morning, maybe its fatigue after 24 hours travel, maybe its that feeling of the universe being so thin here that I can literally feel you with us, maybe it’s Christmas and traditions we skipped as to not have to face the missing. Maybe I’m just leaking. Its a funny thing, forging along and traveling as we do – the amazing privilege of seeing the world, experiencing new places and connecting with old friends, I feel so blessed, so lucky we have the means and the desires to do so, yet at times, it seems so unfair not having you here.

Today, while walking on the beach at sunrise, it struck me what a great gift it is to love and be loved. Possibly the greatest gift of all as I see it, and the single most important reason to celebrate and be with the people closest to you heart this time of year, Christmas.

I feel blessed to have my heart cracked open and overflowing for so many years. To have played in the sun and danced in the rain, travelled the world and created the most amazingly comfortable and welcoming home. There is magic in our walls. Magic of hopes and dreams, of love and loss, laughter and music, children playing, friends gathering and especially Christmas Spirit.  I remember well a conversation I had with David, whom we are visiting here in Australia. He recognized what a special thing we had, and his words still ring in my heart, “most people don’t have what you have within these four walls, most people will never know.”

You see it’s so easy to get caught up in all that we feel is missing, that we don’t have, that we think we need, or desire. It’s easy to get caught up in the presents, and the wrapping and the baking and the cards, the to-do list and the expectations. Oh the expectations, they’re a killer.  Im not sure when it all became clear, or even if it fully has, but I know that I have realized this truth. The most important gifts do not come in beautifully wrapped packages, or shiny baubles or perfectly set dinner tables. The most important gift is love.

We had it all, because we had love. True give and take love, inspiring love, love that cared for and nurtured, love that took risks and played safe when needed. Love that set me free to be me, yet was grounding and protective. Love that overflowed to our children and included those around us, in our closest circles, and sometimes even strangers on the street.  Love that created and upheld traditions, like trimming the tree and making pizzles, filling the advent calendar and late night wrapping over bottles and bottles of wine. Love that looked over my shoulder at the gifts so carefully chosen, with a genuine interest and joy at how we expressed OUR love. Love that lit up the tree in tiny white lights, and made sure to capture every moment on film as to not miss a thing.

Suddenly, I am feeling homesick, on the other side of the world – or something that feels like that. Suddenly I am feeling great loss. A perfect example of no matter where you go there you are. Suddenly I am feeling we should have stayed home longer and left after Christmas Day, keeping busy and getting lost in the hustle and bustle, but at least sharing traditions in our home, even if without you there. I am in one of the most exquisite places in the world, surrounded by friends and my beautiful family yet I am feeling somewhat alone. I’ve skipped the traditions -this year- in an effort not to feel, yet here I am, away from it all with the time and space to feel it so hard. You see God works in mysterious ways, giving us exactly what we need when we need it most and sometimes forcing us to feel in the most delicate and backhanded way.

It’s taken me all morning to get these words out, it gets so heavy, and the tears so big, I have to take breaks here and there, get distracted, check out – shut it down – but in it all, as difficult as it seems, I feel love. A love that will take me back to the beach today, to lay in the sun and feel the warmth on my body, al love that will make a list and head out to buy presents for the girls and bake cookies to leave for Santa, even in the Australian summer heat. A love that will remind me to cherish the moments together with this gang, and to follow our bliss and realize our dreams with the gentleness and care that I need.

To all of you at home, we are well, and we miss you, but we are doing our work here down under. The work of our grieving and healing, creating memories and magic in a place that is a bit more gentle than the east coast winter, with fewer distractions and places to be. A place that keeps our closest people, our “other siblings” who have been holding space and supporting us from afar through it all.  A place we had planned to be as a family this year, God willing.  We will think of you on Christmas Eve drinking too much wine, and on New Years Day strutting down Broad Street.  We will miss you at breakfast, and will make up for it when we get home for sure. We’ll be “with you in spirit” as we hold you in our hearts and know your love.

Form the other side of the world, we wish you all a Blessed Christmas Season and a New Year filled with opportunity and amazing dreams fulfilled. Take time, and care to love bigger this year, not with presents but with your heart, for we never know our path and we never know our time, and -the stuff – well, you certainly cant take it all with you.

Thank God we have Jazz Fest…

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(mid Dave Matthews set 1st Weekend. EPIC)

started this post last week –

Its been a crazy freakin’ upside side down and right side up again kind of week here in 08033. Superman is currently rocking out to Anders Obsborne in the other room, windows open, sun shining on him. Perfect Thursday evening -in preparation for the Lettuce show at The Blockley – he told the doctor the other day “music is my medicine” Making memories and laughing with your friends is what we ALL live for! He’s so right.

Music has been so much for us through our relationship – totally our common bond. It’s been so great to get out and about with our gang. “Thank God we have Jazz Fest.” and the days preceding and following it. The days we count down the days, and the days we recap it. Luck us, getting to Jazz Fest this year, lucky us! Sometimes you just need a care free soul filling weekend away in the sun, or in our case the driving pouring rain- to put it all in to perspective and remind you- life isn’t about passing the storm, it’s about dancing in the rain. Nothing better than gettin’ down with your friends!

Good thing too, because just after the most fun week ever – came the least fun week ever. (although I hear the Hurley’s pool party was pretty awesome!) Here you have it.

five radiation treatments

1 3 hour chemo sit

1 clinic visit with his radiologist

1 appointment with Dr/. Langer

1 emergency room visit

1 night stay in the hospital

1.7 liters of fluid drained from his right lung (and again 1.5 more)

1 chest xray

2 MRI’s

to fill you in:

with all this tests, we’ve found more cancer, in more places, but when Dr Langer is involved, there’s a plan. Superman’s in a pretty bad rough patch, there’s not been such good news this week, and he’s feeling really crappy. God willing, it’s going back uphill soon. We’ll be hanging on the porch this week, listening to music pretending we’re in New Orleans – if you’re in town, stop over! It’s a GAME ON! kind of week.

love and light,

xxN

Follow The Sun

broad street

If you ever thought the road ahead was too difficult or too bumpy, or you weren’t fast enough, or strong enough, didn’t train hard enough, didn’t have the right shoes, or the right clothes or that you didn’t even care if you finished anyhow, this story is for you.

This is a story of determination, spirit, togetherness, love, community and God Speed. Really truly, the kind of God Speed that no human being can ever muster, or will to happen, the kind that is bigger than you.

The Broad Street Run, a ten mile race through our City of Brotherly Love, was quickly approaching.  We had committed this year once again to run with our “Game ON!” crew. Our Haddonfield gang ran this race for Dean the year he was diagnosed. Over the past three years, that group has grown to 21 or 23 depending on the day, who train together, text incessantly, quit drinking for 30 days prior to the race, and literally carry each other through to the finish in all ways. Some do it for time, some for fun, some just to lift Dean up and take a stab at something they never imagined they could do, and he has inspired them, myself included.

Training had been on the back burner in our house, with Dean’s back problems, and his seemingly never ending treatment schedule of radiation and chemo, 5 days a week. Add to that our busy travel schedule (yay!) and the girls sports – there was just no time. He bought new runners (thank you soccer families for all the coach gifts at the end of the season!) based on the fact that they looked fast, laced them up and ran exactly once. My own training schedule non existent, with the exception of trail run at Whistler #ambassadorlove and one “long” 3.4 mile run with Sophia. The kids, having double practices some days felt they were OK, although having never clocked more than 5 miles had no idea what they were in store for.  But in our family it’s “go big or go home” so we couldn’t quit.

Earlier this week, while in New Orleans, Dean started having acute pain in his right side. I kept him down only a few moments amongst the thrill of Jazz Fest but became a literal knife in his side the day we got home.  By mid-week I had called his friends with serious concern for his well being. His spirit took a nose dive and his light seemed to dim.  He put his foot down on Thursday. He wasn’t running. He wasn’t even going to watch.

Then something happened.

On Saturday, still limping in pain, and on very little sleep, he decided he’d START and FINISH the race with us, because “those were the best two parts.” We didn’t talk about the middle, nobody cared how he got from point a to point b, he’s got stage four cancer for pete’s sake! We joked about the subway being free, and made sure he had cab fare. really truly.

He started with us, sent us to run ahead at mile 2 and we crossed the finish as a family. He ran all ten miles, on his own, every step a gift.  He said it was like meditation. Truly a miracle, truly other worldly, and a testament to determination, pride, a bigger family and his commitment to LIFE.

I asked the girls to write a few words about their experience, without consulting each other their message is the same. The day was life changing.  I think they can speak for all.

I’ll let you read and enjoy.

And pssst….the next time you want to quit, dig deep – keep it going. Your spirit will thank you again and again and you might just inspire someone to go the extra mile as well.

Today was a life changing day!

My mom Nicole, my sister Sophia, my dad Dean, and myself ran Broad Street. It’s a 10 mile race all through Philadelphia!  Me, not as prepared as I should of been, was amped up at 6:00am to run! I started by pulling myself out of bed and getting dressed. The rush of the morning breeze woke me up! We drove to the Hurley’s house all decked out in our red socks and Game On shirts, some photos were taken, the off to Philly it was!

The subway was a rush! hundreds of people crammed into the subway car, the small cramped space was getting to me. Smiles, laughter, and jokes were exchanged between the Game on crew! The chill of walking out of the subway station was a thrill. Walking to our corral was interesting. Crowded, loud, stretching runners some wearing  ridiculous outfits! We all walked to the bathrooms which were nasty – lets not get into detail about that. As we were warming up the national anthem was sung. As soon as that beautiful voice hit the earth the sun started gleaming on us! We started waking into the street, the beginning jitters came to me. We were all together talking and taking pictures – suddenly this sketchy guy walked up to us and was asking to get through claiming to try and get to his son to start with him. His black backpack made him even more sketchy – never mind that.  The race started and we couldn’t get in because we were in a side street. we finally got fed into the crowd 20-30 minutes later.

Running was a thrill,as a family was even better! We were running and running! As we gradually made it to each mile mark, I knew I would be getting even more tired. I pushed and pushed! This was my goal – to cross that finish line. Running to the beat of my music was good but listening to all the cheers and live music made me gleam and smile as bright as the sun!

Each mile I would tell myself you just keep getting closer and closer! The five mile mark was the best! I was half way there!! A little past the 8 mile mark the lululemon station was cheering with signs and saying come on girls you can do it!  We got so many cheers, high fives, and go girls. We kept on pushing no matter what! Near the end it started getting really crowded and loud – that made my adrenalin pump even more! Just before the nine mile mark my dad calls me and says ‘what’s up?’ I say ‘just running, what about you?’ ‘I’m at the lulu lemon station ill see you at the finish line!’ (me asking if it’s ok to run ahead) goes with a beaming smile to the finish line! I hear screaming, and cheering- for me…the rest of the Game On crew was cheering and so proud!

As I crossed the finish line I screamed in joy! Waiting for my mom and my sister to come I was still racing with adrenalin. We got our medals and I put it on like I was being honored for a special Medal of Honor. We grabbed the food bags and some water and walked to meet up with the rest of the gang. I got so many “I’m so proud of you and your so amazing!” it was awesome.

We made a plan to get a boot over the fence when daddy came close! Mrs. Stolarick saw my dad and Mr. Jacovini helped me over! Everyone was screaming to me, “you’re going the wrong way!” I ran to my dad with my arms wide open ready to embrace his hug! We all grabbed hands and finished the race then slowly crept over to the crowd. We took our adventure back to the car. We walked and walked. Each time we would go into a lot we would say “oh it’s this one…nope it’s the next one” we kept going! We finally made it, a 2.9 mile walk back to the car and my aching muscles were killing me. I decided to lay down on the warm ground. everyone followed, the soreness of my muscles told me to stay down and not move but I knew I had to get up, stretch, and congratulate everyone once again. A police officer came over and told us we had to leave. The day wasn’t over but my muscles told me that the rest of the day I would rest!

Today is a day I will remember for the rest of my life!!

 

 

Broad Street Run By: Sophia Cucinotta

May 5, 2013 was at life changing day for me an my family! That day we all ran the Broad Street Run! It was a 10 mile race all through Philadelphia.  We needed to wake up at 6 a.m. to get ready. The morning birds and the rush of my family woke me up. At the exact moment I got out of my bed, I saw my calendar and noticed it had said, May 5, 2013 Broad Street Run!  I was overjoyed! I got to experience the race for my first time! We drove our car to the Phillies stadium, then took the subway to the starting line.

When we got there we all went to the bathroom and then headed to our line. When the first pop gun when off I was jumping for joy! We ended up having to wait 26 more minutes until the people started to move. Then the second pop gun wen’t off and everybody started running! I gave my mom and dad a big kiss, and I was off!

All down the streets there were people cheering us all on! I started off running with my dad, but then I ran with my mom and sister! When we were running it felt amazing! At mile 3 I pitched my long sleeve and sweatshirt. At mile 8, there was the Lululemon Cheer Squad! I saw so many people I knew cheering me on! right from then I was pushing myself to finish strong!  When I saw the finish line I was so happy! Right when I crossed the line I hugged my mom and my sister! I had run 10 miles!

We met up with my moms friends, and waited for my dad to come by. When we saw him Mr. Jacovini and Mr. Stolarick  helped my mom, sister, and I over the fence to finish the race again with my dad! I sprinted to my dad and squeezed him so hard! We all held hangs and finished the race.

I will never forget that day! That is one of the most important days in my life! I am so thankful that I got to run it with my friends and family! And I am aspecally proud of my dad, he ran it! He has cancer, and is going through radiation and treatment!  So dad if you are reading this, I love you very much, keep on fighting and…… GAME ON!

Damn. That Was a Small Window

soulrebels

Sometimes it seems as if we’ve become experts in seizing them moment, especially recently. What could easily be a highly emotionally charged predicament is a business for us now. We gather the information, analyze the situation, come up with a plan and execute it in the least invasive way possible. Dean’s drive and commitment to his family, his work his teams and his music have gotten him up and out on days where most of us would self medicate and waste the day away. When God gives us a window of time when we don’t have to react, we take it.

This was the case, two weeks ago, just after his last round of hard core chemo, side effects in full swing.  On a whim – well as far as he knows – we were swept away to New York, with the best of friends, to escape the recent news, and soothe our soul. He totally rallied, with a smile. It was a blink of an eye, our night at Brooklyn Bowl – The Soul Rebels, John Medeski,  laughter, dancing, and even a few strikes in the lanes. We’ve never been bowling together. Dean “can’t bowl” after his motorcycle mishap a lifetime ago. Dean cant bowl – ha! I think he ended up wining the game. Just another superpower he has under that cape. It was an awesome night, I might even venture to call it epic, we were all in agreement. There’s something magical about spending time with Dean, his passion for life is contagious, and it’s a true reminder of how we should all be living in the moment, sharing our hearts and spending more time with people we love, doing what we love.

(Oh – and Brooklyn Bowl – Holy Moly! That gang couldn’t have been more hospitable. If you ever get a chance to see a show there, do it! I think it might be one of our favorite music venues ever, second only to The Fillmore in SFC.)

So- the latest news. While the docs have been pleased with the results of this knock ‘em sock ‘em chemo cocktail he’s been withstanding for five or so months- there are a few tumors growing at a faster rate than we’d like, and a change is in order. We thought he’d get a break- maintenance chemo for a few weeks, but unfortunately that’s not the case. As I write this, he’s in recovery, post biopsy, to gather more molecular data. The sample will be sent across the miles, and we’ll wait (a few weeks) for the lab to report their findings. In the meantime, he’ll be on a new regimen, IV chemo every three weeks- a definite improvement over the 3 hour weekly sit he was withstanding for the last 30 weeks. On April 1st, he’ll begin seven weeks of radiation to his lugs, five days a week. Ugh. it will certainly prove to be a challenging Spring, but nonetheless, one filled with soccer games and family dinners, longer days, lots of music, magic, rebirth, and a quick hit of NOLA love late April.

In the meantime – we have a few fun things on our schedule and would love to see you out there with us!

Up for a party? Join us on Saturday March 16th at The Princeton in Avalon as Dean and some of the local fellas jam at the Kanen Keating- Wear Cancer Benefit. Kanen aka “Hurrikanen,” is a courageous, free spirited, full of love 5 year old boy from Cape May County who was diagnosed with cancer early this year. We know all to well what a long road it’ll be for little Kanen and his family and are honored to support this little guy in his fight.

Secondly, the For Pete’s Sake walk on March 24th. Unfortunately, we’ll be out of town this year, but this is an organization very close to our hearts. It’s an awesome day at CItizen’s Bank Park and the kids get to run the bases! If you want to join the fun, connect with Jessica, she is heading up the Tough Dawgs team again this year. For more on For Pete’s Sake, click here, you might recognize Superman in his plain clothes!

We’re also training for Broad Street Run, a wonderfilled ten miler through or favorite City of Brotherly Love. The girls are running with us this year, along with 20 or so of our best hometown posse. We seriously would be lost without this crew not to mention all the support we have showering us from coast to coast.  Dean has a race bib, we’ll see how he feels.  If you see him out there, hittin’ the streets – give hime a holler or a high five, and know it must be a very good day! Either way, we’ll run with him or for him, but it wouldn’t surprise me if he pulls it off again this year.

Ok- that’s my long winded story for today, and my therapy for the week. His surgeon just came out to report that they got what they needed, and he’s waking up slowly, Special Prayers and Blessings to the doctors and nurses here at Penn. Their care and passion for their work are unmatchable. And he’s awake. We are so blessed. xxN

My Upside Down World

In Feburary 2010, at 44 years young, in the prime of my life and just after completing my first marathon, my life turned upside down.

Cancer.

Stage Four.

Shit.

“Living in the window” is a saying we have created to describe our lives between scans – our bright spots, in between the periodic check points, the chemo, the radiation, the traveling to other cities for treatment, the prescriptions, the paperwork, the lost time in CVS, the exhaustion, and the tears.

Looking “in the window” you’ll find our a-ha moments, our places of respite and recharge, our stories of love and adventure, soccer teams and late night shows.  That time “in the window” is our time to connect with those we love, when we have the energy, and can carve out the time, and just live, carefree, even if just for a moment.

Sometimes the space is defined by good news – which makes that slice of time is a celebration, sometimes it’s another challenge ahead. Either way, we try to keep our gaze forward, living a little bit BIGGER and BRIGHTER each day, and focusing on the stuff that really matters.

Stop in, see what were up to, discover some new music, connect with our resources, catch up on my treatment, follow our adventures and be INSPIRED  as we continue “LIVING IN THE WINDOW”

Summer Lovin’

sumer livin'\

Sorry its been a while- we’ve been really busy living it up the past few months and trying to squeeze every bit of loving fun in that we can! We’ve come to refer to it as living in the window. The stretch of life between Dean’s scans. The small break in reality that we give ourselves to counter the stress of dealing with this crazy disease.  The most recent window has been filled with soccer games and sailboats, band practice and birthdays, living in the moment and loving even bigger. We’ve been so blessed with opportunities to do and see and to share the world with our girls.The transition form New York back to Philly for treatment was bittersweet, although much less taxing on the family, its never good when the medicine stops working. It typically means a few weeks of scrambling to find a new plan, lots of collaboration of the nurses and docs and inevitably a new schedule to get used to.

Which brings us to the latest update-

We counted tumors this week- 22 in all. Sounds like a lot for sure. Even still, this comes as good news. All 22 pesky tumors are contained to Deans lungs and haven’t moved anywhere else. If you saw him sing a few weeks ago- you’d never believe it. He is starting to feel a bit fatigued at times,  and squeezing in the fun takes a bit more effort, but he’s still quick to paddle out in the ocean, launch the boat w the girls, and dream up the next big adventure. Work has been going fairly well, and his team at Boeing is so tremendously supportive, but with the latest developments and the transition to a new protocol, it looks like some time off is in the cards.

Well take the next few weeks to get set on a new trial, possibly taking is back to Sloane or Duke, refill our tanks for this next round of treatments and conquer the lists of things we want to do this summer. Something we suggest everyone do- making the list, not quite as far reaching as a bucket list, more like things you want to do but don’t make the time. Dean’s has sailing the sunfish in a race, Sophia will be working on getting barreled (if the summer flats don’t hit too soon!) Gianna wants to have a friend stay with us at the beach for two nights, and I’ll be making blueberry jam. The lists go on, insuring that we make the most out of our time this summer, and that everyone gets to share in the fun!
Well be spending our time in Ocean City, and taking a few road trips up the coast visiting with friends, and seeing the sights.

Please continue to pray for Dean and add to list his mother, Angela Hawes. She is currently in the ICU at Our Lady of Lourdes after complications from her recent knee replacement. While she is in stable condition, she has a long road ahead.  Thanks for all  your good thoughts and kind words! They mean the world! Hope you have a safe and Happy 4th- make sure to catch some fireworks- they always make us smile 🙂

xxo NDG&S