I hope that you never know…

It has been awhile since I last wrote in this sacred place, and I hope to write more frequently now that I have returned. Tonight I read an article posted on a sugar filled mom blog that was written by the friend of a bereaved parent. It was titled ‘The Most Powerful Thing You Can Say to Another Mom’ and it was about five words that were uttered by her bereaved friend shortly after the death of her 21 month old daughter. When the bereaved mother was describing her pain to the writer she was quoted as saying “You’re a mom, you know”. The writer made an inference that the most important words she can share with someone who is facing the pain of loss is “I know, I’m a mom”. It is a well intentioned article, but unfortunately the writer simply does not know.

Let me begin by saying that I will not ever question the feelings or sentiments of a fellow bereaved parent, but I will use my voice as a bereaved mother when an article like this is published and beg people to temper their words to the bereaved very carefully. As mothers we do share the common connection of our hearts bond to our children, but when the physical manifestation of their life is ripped from us it is so profoundly life-altering that words alone cannot truly describe it. In the simplest of terms, unless you are a fellow bereaved parent you do not know. And I hope that you never do.

If you have never had to listen to the deafening void from a heartbeat once so strong and vibrant fall silent you do not know.

If you have never held your child’s body lifeless and limp in your arms as you whisper your last goodbye you do not know.

If you have never laid your beautiful and precious child into a body bag and felt as though the sound of it’s zip was literally ripping your heart from your chest you do not know.

If you have never chosen an urn, a casket, or planned a funeral or memorial service for your child whom you have outlived you do not know.

If you have never felt that the crushing pain of your child’s death would literally drown you with nothing more than air you do not know.

If you have never contemplated leaving the world behind because the pain of losing your child is so completely unbearable you do not know.

If you have never managed to discover that somehow, in some insanely miraculous way you did in fact manage one more breath in that moment, and even more in the days that came after, you do not know.

If you have never looked in the mirror and found that you did not recognize the shell of a person that was staring back at you in the darkest moments of your grief you do not know.

And then….

If you have never whispered your late child’s name to the air praying, wishing, hoping with all of your heart that it could be heard by him you simply cannot know.

If you have never heard your late child’s name shouted across a playground and thought that just for a moment- ‘what ifyou simply cannot know.

If you have never felt the whisper of a tear and the immense gratitude as an old friend told you that she thought of your child and said his name aloud you simply cannot know.

This is not the grief Olympics. In losing my son to stillbirth I do not pretend to understand the the pain that is carried by my dear friend who said goodbye to her son after 8 short years of his life on this beautiful earth. I don’t know her pain simply because I have lived with my own. In this sentiment alone I want the world to know that what a bereaved parent truly needs is not found in a platitude about motherhood. What we need comes in varying forms throughout the grief process and believe it or not there are times when it can even be found in shared silence. I understand the need to say something, anything. If I had to choose a phrase to speak aloud I think it would be simply this:

I am here for you.

No more, no less. When you reveal those words I have this advice- embody them.  Be there. Whether it is in physical presence or in spirit across them miles. Mean it. Own it. Even if you are pushed away. Take these words and use them to breathe life into the person who will likely find it hard to even comprehend waking to one more day without her child in her arms. Be a light during the darkest moments of humanity. Find a way to offer support and to show that your heart is also breaking, because I know that it probably is. Even so, know that no matter what the circumstance, unless you have lost a child yourself you will never, ever know this pain. And know that this is alright. We do not expect you to know this pain, or to carry it for us. In all honesty we would hand it to you in an instant of we could, but unfortunately it is ours alone to bear. Walk alongside us, even if you no longer recognize the person you thought you knew. We are changed, we are shattered. But in time we will walk again and see the world with an entirely new set of eyes.

I hope that you hear my words. Because unfortunately I know. And I wish more than anything that I did not.

Apres.

Wow. Two posts in one day after months of silence!

The last one probably won’t make a whole lot of sense to most, but as always, the writing is cathartic for me.

I haven’t been here in awhile, but I have been with my fellow medusas in other places- sharing light and celebrating memory. It’s a good place to be when you have kindred souls to walk with.

I have lots to catch up on, but I’ll probably just springboard from where I was. Halloween. Thanksgiving. Disney with the family and the bestie and the friends. A birthday girl. Lots of good times- amazing times. Memories.

In the lead up to Christmas I’m faced with all that I have, and all that I have not. It’s a really delicate sword to balance. Still, the good days far outweigh the bad, and life is- dare I say- seemingly normal to those looking in. Even though they are looking through a stained glass window.

The biggest thing lately is keeping his memory alive.

So then.

I had a tough spell with the PV. A few months back my numbers were steadily growing out of control. Arms loaded with track marks from phlebotomies taken every other week (including the most painful IV I have ever had in my life). This brought with it a discussion about hydrea, though it was put on the back burner because I was still nursing/pumping for the twins.

Speaking of.

I just finished pumping this week. We made it just past 19 months. I’m pretty proud, though still a bit broken over letting go of my own milk. Three years ago I had to bind my chest to stop it flowing for a baby it would never sustain. I wondered about ever feeding a living child again, and yet I did- two of them. While things didn’t work out quite the way I expected in nursing the twins, they still got it- and nothing else until we added cows milk when they turned one. I pumped my heart out. For them. And it was worth every ounce of determination I put into it. There was no need to bind, just a slow and gradual trend towards letting go. How appropriate.

I’m not used to not being pregnant. To not trying. It’s quite foreign actually. For over 8 years it is all I have known. The cycles just returned last month and it feels so strange. Almost pointless for the time being.

Back to the PV though. I had a really hard time considering hydrea. I just don’t want it in my body- regardless of who is being fed from it. Like a light switch the frequent phlebotomies have finally started to work. For now hydrea is off the table again, and I’m trying hard to keep it that way even though I know it’s a futile effort.

I’m busy- and that is a good thing. To feel life pulsing through my veins. It’s a gift, for certain. For while this life of mine is far from perfect, it is still quite beautiful- despite its scars.

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The view from last night.

More soon.. I promise not to be a stranger.

Stream.

It’s been awhile.. again. But here I am. Three years have somehow slipped past me, and for the first time in quite awhile I can say that it feels like only yesterday. So much has happened in the space between, and sometimes that is hard to understand. To explain. To describe.

The twins are 19 months old. 19. Months. Old. Young. Beautiful. Loved. The elders are growing. Precious. And the one who almost slipped away wore a reindeer hat. I held it in my hands. Felt the brown construction paper. Traced my fingers over his name. The name he learned to write on his own this year. And I think to myself that it almost wasn’t here. It almost wasn’t. It felt like a dream. How beautiful it is though. How treasured. How adored. And he takes the hat from my hands and shows me how he made it. For a second I hold my breath. Exhale.

Beauty.

But.

The missing is still here. Today. It always will be. Maybe the passing of years has taught me that, even if I thought I knew it in the beginning. Things outside the circle change, yet the center remains the same, regardless of the atmosphere.

I’ve been doing a lot of reading lately. A variety of topics really- something to do with everything, and nothing. I have opinions. But. I don’t often share them. Sometimes it’s just not worth it. Mostly they are just for me. Finally that is ok. Finally. Age. Wisdom.

Today. Tonight. What is his legacy? What am I doing in his honor? What can he see from beyond, happening in his name?

So much change on the outside. New faces. People who don’t truly know the time before. Or the woman they never met.

Oh how full your arms are! Oh how busy you must be! Oh how do you do it? Oh how gorgeous they are. Oh you have five!

Six.

Immediately. Six.

Even though an invisible shield protects one from sight. Not my heart though. Not my soul. Not my body. And the cells that still carry lost bits of his DNA. Of each of them.

It’s complicated.

I’m selective. My vague answers are not meant to be an offense. They are defense.

More and more today, three years down the road the questions come.

Are you done?

Snort.

Fuck you.

If you only knew.

But the truth is that while I think it, I don’t always say it. Even though I send it tearing through the space between us.

Like a dagger.

Buy they just don’t know.

So many of my fellow medusas have birthed again. In the space between. Some are truly complete, and they share this openly.

I’m not though.

Maybe it’s that I am coming to terms with the fact that the answer to the questions is no. My family will never, ever be complete. Physically and metaphorically. I will never say never. I will never close the door.

I have learned that plans mean very little. They are good to have, but you can only trust so much in them. Life gets in the way, but it’s not always for the worst.

When asked for the thousandth time, the answer will always be the same. Maybe. I’m not sure. No. All the same.

But.

It’s not true though. Because I do know.

I had plans to go in another direction. Instead I find myself here. The plan changed.

I have come to terms with that. This path. This life. This longing.

It is what it is. It cannot be changed. With time that kind of peace has come. A blessing. Indeed.

It will never be done. I will never say never because the truth is that being incomplete helps to sharpen the lens.

Maybe someday, when I least expect it another will come. Maybe.

And even if one does not, there will still always be the one above.

The door held open. Until it’s time to greet the stars.

A Magical Introduction…

“The only way to be truly satisfied is to do what you believe is great work, and the only way to do great work is to love what you do. If you haven’t found it yet, keep looking, and don’t settle. As with all matters of the heart, you’ll know when you find it. And like any great relationship, it just gets better and better as the years roll on. So keep looking, don’t settle.”-Steve Jobs (1955-2011)

I have a little magic to share.. and I’ve decided to let it out from under my hat! For over a decade I have planned and booked Walt Disney World vacations for my friends and family. It has been so much fun to plan a trip and in many cases, to see the look on the face of someone who is visiting Disney for the first time. After 15 years of planning these trips right down to the very last detail, I have decided that now is the time to take that experience and let it grow.

Welcome to the world Moments of Magic Travel! (This is the part where I take off my hat and confetti flies everywhere while fireworks blast in the background- can’t you just picture it!).

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Created from my love of all things Disney, I have started my very own Disney Travel Agency! If you read a bit further down you’ll understand what MOMTravel (get it :) ) is all about. Starting this business was a huge step for me. For many years I thought about doing something on the sidelines while still being a full time stay at home mother to my kids. I had briefly thought about doing this years ago, but life threw a few curve balls that I obviously never saw coming. Now I realize that there really never was a more perfect time than today, and as cliche as it may seem, all the pieces of building this business have truly seemed to fall into place perfectly!

I’m really excited to be bringing this dream into reality. Creating and growing this business will allow me to do something that I truly love and am passionate about, while staying present in the daily lives of my children (who are obviously thrilled that mommy’s new biz means more time in Disney each year!). I don’t work for anyone other than my clients, and that was a crucial aspect of my vision for this company. Moments of Magic Travel has been created from the ground up, and over the next few years I have big pans for its growth- which I hope will lead to its future success!

I’m excited to share this with all of you who read here- people who have journeyed with me from darkness into the light. Starting this company is more to me than a tick on my life’s timeline. It is also a snapshot of life after loss. In the early days I could not imagine myself doing anything other than getting out of bed each day. Three years down the road much has changed in my life, and it feels good to be doing something I love alongside my family and friends. For the first time in a long time I have goals- not only for myself, but for the growth of something tangible. I am, dare I say it, proud.

I hope you will take a moment to pop on over to a brand new blog- one that will obviously be entrenched in all things Disney. I also have a (dramatic pause) FACEBOOK page for the company! I KNOW! Come over and make my time on the face more fun- give us a ‘like’ and you might just win a prize or two! The launch of Moments of Magic Travel is going to be fun- that much I can guarantee! Keep on reading below to learn about  some of the many benefits of booking your Disney vacation with MOM Travel. If you are planning a trip to any of the Disney Parks, Worldwide Adventures by Disney locations, or the Disney Cruise Line I hope you will give me a call- I promise you will find excellent customer service with a LOT of perks waiting for you on the other end of the line! For right now I’m taking a cue from a beloved fairy tale- and holding on to faith, trust and pixie dust! Off we go!

What is Moments of Magic Travel?

Moments of Magic Travel is an authorized, licensed, bonded and insured full service Disney Vacation Travel Planning Service- in a nutshell, we do all the work planning your Disney destination vacation down to the very last detail at NO COST to our clients! That’s right- our services are completely FREE! Our job is to book your vacation package at the very best price possible -the same price as what you would pay if you called Disney yourself, but often for LESS because we consistently monitor each reservation to make sure our clients are getting the best offer from Disney. We book any Disney Destination Vacation package- including Walt Disney World, Disneyland, The Disney Cruise Line, Adventures By Disney, Aulani, and the Disney Parks in Tokyo and Paris!

What else does Moments of Magic Travel do?

When you call Moments of Magic Travel  we will create a Disney Destination vacation that is tailored to your families needs. We handle every aspect of your Disney vacation planning- from deciding on which of the wonderful resorts to choose, to booking dining reservations and creating a customized time saving itinerary that will help you navigate the parks like a pro!

How do you know so much about Disney?

As an authorized Disney Travel Agent* the owner of Moments of Magic Travel is a graduate of Disney’s College of Knowledge! She has been planning Disney Destination vacations for over 15 years and spends a lot of time in the parks throughout the year! Her years of experience in all things Disney related will translate into a wealth of knowledge in planning YOUR Disney Dream Vacation!

How do I contact you?

You can reach us daily from 8am to 7pm EST at 843-737-2994. If you are a client traveling in the parks, you will also have access to our text messaging service outside of regular business hours. We are 100% committed to your satisfaction and we will do everything we can to exceed your expectations! When you call during normal business hours us we will get back to you with a requested quote within one hour! Our website services are open 24 hours a day- all of you night owls can join us on-line anytime!

You can find Moments of Magic Travel on-line at Moments of Magic Travel, on Facebook, Twitter- @Findmagic, Pinterest, Instagram and over on our blog which will feature great articles about Disney Destination Vacations, trivia and tips to navigate the parks like a pro! Be sure to ‘like’ us on Facebook to stay in the loop for our special offers and giveaways!

How much do your services cost?

Absolutely NOTHING. Our planning services are completely FREE to our clients! We will provide a written estimate of our vacation packages and once booked, you will receive your reservation number directly from Disney!

Will you get me the best price for my Disney Vacation?

ABSOLUTELY! Saving you money is our goal! We have knowledge of new discounts and promotions before the general public! We compare discounts to find the best deal for you and will modify your existing reservation to a lower price if one becomes available! We book your Disney Vacation package directly through the Disney Travel Company, so rest assured that your booking is safe and guaranteed! We also offer travel insurance policies on all of our packages which will help protect you in the event of an unforeseen travel emergency.

At Moments of Magic Travel our mission is simple- We plan the magic- you create the memories! Give us a call and let us turn your dream of a Disney Destination Vacation into a reality!

*Not an agent of the Walt Disney Company or it’s affiliates.

Three.

Today he would be a beautiful 3 year old boy. He lives on in my heart, in the quiet places of my mind, and amongst the stars where he continues his journey. Time does not erase the ache, the longing and the desire to know what could have been. Happy 3rd Birthday my handsome one. I miss you so much Cullen. I love you bigger than the sky. Kiss the stars for me sweet voyager.
“Goodnight stars. Goodnight air. Goodnight noises everywhere” – Margaret Wise Brown

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Team Ethen

I want to take a moment to introduce you to a very special little boy. This is Ethen- he is 8 years old. He is one of the brightest stars you will ever meet- and tonight he is fighting for his life.

Ethen- the fighter

Ethen- the fighter

A little over a week and a half ago Ethen was diagnosed with a very rare and inoperable brain tumor called a DIPG. In the interest of honoring his mamma’s wishes and staying positive, I won’t go into the specifics other than to say that at the time of his initial diagnosis he was given the medial survival time of 9 months to live. Over the past week Ethen was officially admitted into a special program at St. Jude’s in TN that specializes in this type of tumor. Their goal is to use a targeted course of experimental drugs and radiation to shrink the tumor and increase Ethen’s survival time. As a community, our hope is that it will destroy the tumor completely.

As soon as he was diagnosed his mother came across a study linking the powerful benefits of breast milk- specifically HAMLET cells- to an ability to kill cancer cells. Knowing that I was pumping for the twins, she asked me to become a breast milk donor to Ethen which I immediately agreed to. I also reached out to the greater community for even more help. I went back to Eats on Feets and to a local group of moms to ask for more donors as our goal is to give Ethen as much breast milk as possible throughout his treatment. I enlisted the help of several local lactating mammas who have pulled together in the most beautiful circle of love and light to provide this amazing source of healing to Ethen. Each of Ethen’s donors is providing a precious gift for Ethen and his family- Hope. I could not be more proud of these women and their dedication to doing something so special for a child that they have never even met.

I’m writing about Ethen tonight to ask for your help and to build awareness about the need for funding and research on pediatric brain tumors. Please visit his FB page to follow his story and join his team. Team Ethen is a community of family, friends, and people who are committed to seeing Ethen through his battle. In the coming weeks and months we will continue to have many different ways to help Ethen and his family. If you would like to help in any way please click on the ‘contact me’ tab on my home page. Even the simplest get well card will brighten his day in more ways than you can imagine. Additionally I will be selling Team Ethen wristbands for $10- if you are interested in showing your support they will be ready to wear in about 2 weeks and 100% of the proceeds of these sales will go directly to Ethen and his family. We plan to show the world how to to tell pediatric brain tumors like Ethen’s to ‘take a hike’! Every little sentiment counts- and every ray of light will certainly be felt and appreciated by Ethen and his family.

This past Tuesday was the night before he left for St. Jude’s and I said goodbye to Ethen with a high five and a very special package of gifts collected from families in our community. The only instructions on the box were that he not open it until he got to TN. Tonight he arrived at St. Jude’s and opened the box and I hope that he felt the support of an army of people who will stand solidly by his side in his fight against this tumor. This diagnosis may have stolen its way into Ethen’s life, but it will not define this child. His story is one of hope and strength, and I for one will do all that I can to make sure it stays that way. I look forward to hearing from those of you who will join me- Team Ethen is alive and well with love and light- and it is stronger than anything.

Hope. Fight. Love. WIN. We are with you Ethen. You have GOT this one buddy.

 

Salt Life- Part Two- SUP (Paddleboarding)

What does a kiter do when there is no wind?

SUP of course!

A nice thing about this part of the country is that we have both the waves of the ocean for surfing and paddle surfing, and the serenity of flat water- which is great for paddleboarding. This summer I dove into both kiting and SUP’ing and I’m not looking back- at least not if we can get some wind in play sometime soon!

Paddling in this area we have beautiful flat water creeks that feed out into the harbor. Along they way we have met several new friends:

Here’s to the next generation of SUP’ers! Off we go!

I'm ready to SUP mamma!

I’m ready to SUP mamma!

 

On the creek...

On the creek…

C3's first time on the board!

C3’s first time on the board!

Love...

Love…

 

 

 

Salt Life- Part One- Kiteboarding

For many moons I have wanted to learn to be more active in the surf- more specifically to learn to kiteboard. Living so near to the ocean has instilled both a sense of calm and a manic draw to be active within the rolling surf of these southern shores. Many things have stopped me in the past few years- namely grief, infertility, pregnancy and motherhood. Squeezing out as many nanoseconds as possible from each day never seems to leave me with as much as I need.

Somehow, now that the twins are ONE (still can’t get over that) and the elders are getting bigger, I decided that there was no time like the present. Back in March I finally stoked the fire, jumped in and began learning to kiteboard. With 5 kids at home it isn’t easy to find the time, but fortunately I have a somewhat understanding husband ;)

My first class was about learning to handle a trainer kite. The art of kiteboarding is less about riding the board and more about maneuvering the kite. The first class that I took (Kite Zen) taught me the basics of studying the wind, basic kiting terminology, and setting up and flying a small 2.5 meter trainer kite.

Trainer Kite

Trainer Kite

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It’s finally UP!

After I completed that I spent a few more sessions on the beach practicing with the kite before handling it finally ‘clicked’. Once it did I was able to move on a real kite- in this case a 7m North Fuse and a 12m Slingshot Rally. My first lesson with the 7m- called Core Basics- taught me how to set up and handle an actual kite, lines, bar and harness. The goal of that class was to familiarize myself with the set up and breakdown of the kite, practice launching, water re-launching, and landing as well as overall kite safety. After a few hours I had all of the basics in play and it was time to go all in and get my own gear before my next lesson. Thanks to my mom and dad (thanks guys!) I got my Christmas presents early and purchased my gear. I currently fly a 7m North Fuse and trust bar and I will eventually (PLEASE) ride my North Soleil board. My harness is another story…

My quiver :)

My quiver :)

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My next class was called Board Balance and it is aimed at combining the skills learned in Kite Zen and Core Basics to get the kiter up and riding the board. I had a great couple of sessions with my trainer (whom I drive crazy with my type A personality!) but I still lack the ability to get up, stay up and ride the board. Ever since my last board class I have been taking a few steps backward in my practice sessions in order to strengthen my basic skills. Right now I am going back to body dragging ( a critical kiting skill) to help me improve my overall skill set. A week after the second board class I had my first injury and ended up switching my harness. Long story short- I had been wearing an Ion waist harness but noticed that I constantly  had problems with it riding up from my waist to my chest (not good considering there is a steel hook that sticks out from the harness to hold the kite). After a fall in June that ended with a sternum injury, I ended up switching to an Ion seat harness which I will use until I get more comfortable on the water (read- falling less). A seat harness goes on like a pair of board shorts and therefore can’t ride up like a waist harness can.

Lately though, the wind gods have not been kind to this part of the coast and we have had an awful summer for kiting with very little wind. Less wind (measured in knots) means that I can’t get out and practice my skills as much as I need to and it’s quite depressing when all I want to do is practice, practice, practice! S is thinking of learning the sport and we are considering a trip to Cape Hatteras at some time in the future as it’s a kiting mecca for winds and lessons. Until then, I SUP on no wind days- more on that in another post. Hopefully August will be a better month for kiting!

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My view on a Friday night

 

 

 

One.

And then they were one.

Sorry that I am so incredibly delayed in posting these pictures. Two months ago on a sunny day in May the twins officially turned one. It was a day that, if you asked me a few years ago if I would ever get to see it, I would have been unsure of the answer. And yet, here we are. A place where smiles and joy outweigh worry and grief. A place where two beautiful baby boys continue their journey of a life that I once only dreamed of for them. This is what hope looks like. The beautiful colors after the storm. There are days when I still can’t believe it and I do a double take. They are here. They are thriving. They are one.

Une.

Une.

Their own language..

Their own language..

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26

C5

C5

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Let's get this party started!

Let’s get this party started!

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I'm not so sure about this anymore brother...

I’m not so sure about this anymore brother…

The beginning..

The beginning..

..of the end.

..of the end.

 

Their actual cakes. I blurred their names of course ;)

Their actual cakes. I blurred their names of course ;)

 

 

 

The fine line- Return to Zero

Recently I became a State Leader for the Return to Zero pledge drive. My plans at building awareness for this project have been running parallel (and perhaps a bit behind) my plans at building CPR awareness in the wake of C3’s drowning survival. This week I am trying to focus on giving equal time to both causes as the deadline to obtain pledges for the film draws nearer. In case you are not familiar with the film,  here is a brief description of what Return to Zero is all about:

Return to Zero” is an independent film starring Minnie Driver, Paul Adelstein, Alfred Molina, Connie Nielsen, Andrea Anders, Kathy Baker and Sarah Jones. Written and Directed by Sean Hanish, the film is based on the true story of Sean and his wife, Kiley, and their experience of stillbirth. Sean produced the film along with Paul Jaconi-Biery.

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As I sit here thinking about what a film like this can mean to bringing awareness to the topic of stillbirth, I realize that throughout the past year I haven’t talked about grief as much as I usually do. Trust me when I say though, that it is always a part of my everyday life- no matter how it may look from the outside. Lately I feel like I straddle a fine line. A place in which I parent my living children through smiles and laughter illuminated by rays of light and rainbows of color. But as always, there is another side of me that isn’t as obvious as it once was to the outside world. On the other side of the line I am whisked to a place- albeit for a shorter time now than in days past,  in which the realty of losing my son never fades, never softens, never eases. The one thing about grief that never changes is the eternal void in my heart that reminds me of my own fragility through the absence of his hand in mine. Though there is more light in my life now than at any other time in the two and a half years since Cullen died, the ability to find myself on the other side of normal remains constant. To find myself back into the abyss of everything that comes with missing someone so much that you almost fail to breathe. I had a glimpse of that place this past Memorial Day, and every now and again I feel it for Cullen all over agian. For everything he lost, and for everything he left behind. Life after truly is a beautiful mess.

This is why this movie needs to be seen. To break the silence of stillbirth and to show the world what is left behind in the wake of a tragic loss. If you have not already done so, please click here and consider making a pledge to Hollywood that you intend to see this important film. Making a pledge requires noting other than your commitment to see the movie- that’s it- no strings attached. Additionally, please share this pledge with your friends and family so that the producers can reach their goal of gathering 100k pledges by this Thursday, June 20th at 12 midnight PST.Please join me in helping this film to make it to the big screen. Help to shed light on a story that so many others have lived, and on the line we continue to straddle every day.