This is how I fight the darkness

My little one had show and tell today. She decided to bring her doll, Sunshine.

Shortly after we lost the twins we had a visitor who brought Molly a new baby doll. Our visitor arrived with my niece who was about 8 at the time. She’d bought my niece the same doll. One wore pink, the other purple.

My niece left her doll here when she went home, leaving us with two identical baby dolls, where there should’ve been identical babies. Pretty tragic, right?

Anyway, I went on in the depths of my early grief to watch while almost two year old Molly played with the two of them. She’d pretend feed them, put their little pacis in their mouths and arrange the two of them on the steps just so, and then shimmy her little diapered tushy into place between them.

I received a new DSLR camera as a birthday gift from my husband that year- a consolation prize of some sort. He knew I’d wanted one so I could learn to take pictures of the twins when they arrived. I could practically see the pictures in my mind- clear, beautiful shots of their matching faces with Molly, just perfectly out of focus in the background. But I knew with two babies on the way, I wasn’t gonna be able to get that expensive camera.

So when he bought it for me, it was both kind and thoughtful, and also painful and annoying.

But there I was, taking pictures of Molly playing with her twin dolls and imagining, for just that moment, they were real.

I never showed those I pictures to a single soul. Surely they’d think I’d lost it. So here you go:

Screen Shot 2016-01-31 at 5.14.19 PM

Time went on.

Molly -on the surface- forgot about the sisters she’d been expecting that never arrived.

Instead, she embraced her little sister that did arrive and grew to be the most overprotective and loving older sister imaginable.

But the time came when I knew I needed to tell Molly- to remind her, actually.  I knew she carried it inside her. I knew, with the work I do it was only a matter of time till she found out on her own.

So I told her. She was 4.  I wrote about it on this blog. She took it well at the beginning but four months later a close friends 2 year old suddenly died.

And that triggered her. She understood in a way that hit too close to home. The tantrums, the anger, confusion, sadness. It brought me to my knees. I brought her to therapy, it helped.

A few weeks in Molly asked if she could bring the dolls with her.  The dolls. The dolls.

I said yes, of course.

That is the week she named them, Sunshine and Daisy.

And so it was.

Molly was always partial to Daisy. Always.

And my little one was drawn to Sunshine, even before Molly told her about their sisters.

That’s right. Molly told her. They talk about it among themselves sometimes. While they color together or in bed at night. In fact, my little one has almost never spoken to me about Sunshine and Daisy, she’ll only speak to Molly.

So, back to show and tell.

She brought Sunshine.

In preparing for the big day the teacher sent home some questions about the item the child planned to bring. This is what my daughter filled out:

In case you can’t read it the sentence prompts “This is why I love it” and she wrote “because it reminds me of my sister that died.”

Now, I am not going to lie… I did not want her to bring this into school. I asked her a few times if she was sure that she didn’t want to bring another doll. She was adamant. And I certainly didn’t want her to feel ashamed or embarrassed about bringing it in so I said fine.

This morning I walked her into the building and saw her teacher.

Perhaps I should give her a heads up, I thought.

So I told her about the doll and what my daughter wrote about it. She looked a bit horrified. Then I told her it was accurate. I briefly explained our loss, how Molly named the dolls in therapy and that that’s what it was.

The teacher then informed me that someone very close to her had lost twins 15 years ago. “She hasn’t been the same since.” She said.

She explained how she seemed to sort of get trapped in the darkness and never quite made it back.  I told her I’ve known women like that.  I told her I was afraid at one point I’d be like that. I could, from the depths of my grief, feel how easy it could be to slip and fall permanently into the dark. The habits of grief, the perspectives of grief. The colors of the darkness.

I told her I haven’t been the same since either.

I pointed to my pink hair and said “This is how I fight the darkness.” (It was morning drop off- I was barely wearing more than pajamas, let alone any full-on Muchness.)

And I realized, even to this day, even when I so rarely blog, when the talk about grief exhausts me, even when I’ve come to peace with my loss and love my life, I still need to- want to- fight the darkness. It’s everywhere.

I told her I HAD to move- in retrospect I see it now. I could not grow into this me while living in the space of that me. I need to chase the light. I need to share it, and I need to always fight the darkness. We all do in our ways.

Show and tell went ok, I think. I only heard from my daughter who said she shared about her sisters that died but it made her sad and she didn’t want to talk about it.

I’ll email the teacher for an adult perspective on how it went.

For now I feel grateful. Just grateful. For a school that doesn’t freak out about this stuff. For daughters that can share with their hearts open. For a teacher who I could open up to and responded in kindness. For a new niece, born healthy and beautiful just yesterday. For a whole lot of other little things and big things.

#StandwithPP – Why I stand with Planned Parenthood, and so should you.

Every year at this time, for the past 5 years I’ve shared this video with the world in memory of my identical twin daughters, forever nicknamed Sunshine and Daisy. It’s my way of honoring them, letting the world know they existed, and thanking them for all the beauty, joy and blessings they’ve taught me to see in my life.
This year feels different. With so many changes in my life – living in a new state, I have new friends who know nothing about my girls, whose beliefs and opinions I know nothing about. I feel hesitant to share it. Vulnerable.

I don’t want to be known as the woman with two dead babies. 

So I’ve been spending a lot of mental energy trying to untangle the emotions around whether to share their video this year.

Simultaneously, I find myself very emotionally drawn into the raging debate that’s been going on- that against Planned Parenthood. The attacks against them and the services they provide anger and frighten me.

After a little soul searching, I decided to finally admit how close these two subjects are to my heart, and to one another.

I know that most people in my “social circle” aren’t giving much thought to PP. They have medical insurance. They are mostly married. They are moms. They may even consider themselves “pro-life.” There is no reason on god’s green earth that they can imagine Planned Parenthood will ever be something they need in their life.

But they’re wrong.

We, as a society, need Planned Parenthood and the services it provides.

Planned Parenthood provides the tools that allow our girls to control their bodies, their choices, their future. Not by (just) performing abortions when necessary, but by empowering girls and young women (and men) with knowledge, support, compassion, general medical care and yes, birth control.

I watched someone dear to me slowly die from AIDS in my adolescence. That experience planted in me a firm knowledge that my body is my own, and it is my responsibility to protect it. Planned Parenthood gave me the tools to do so. When my primary care Dr. balked at giving 18 year old me birth control, Planned Parenthood was there. When I wanted to be sure that a boy I was intimate with was 100% STD free, Planned Parenthood was there. More than once. And let me tell you, there’s nothing more empowering for a young woman to tell her partner she expects him to get STD tested, and then be able to accompany him to get it done. It demonstrated to both of us that I knew my value and that the young men I chose to be with knew it too.

And I was only able to do that because of Planned Parenthood. Because that is what they do. They are there. For women that have no where else to go. For girls that have no one to ask for help. For mothers whose insurance has lapsed and need to maintain their basic health. For responsible young women that want to protect their health and their future.

I promise, when your daughters get old enough, if they don’t come to you for advice, (or if they do and in your naiveté you fail to provide them with what they need,)  you will pray they are smart and responsible enough to go to Planned Parenthood BEFORE they become part of the 3% who use their services for abortion care.

planned parenthood-01

And if you think that that will never apply to your daughter because of the type of upbringing that you’re providing, well, I hate to tell you this, but in the end, there’s only so much control you have. And it’s less than you think. And the less you think it will be *your* daughter, the less likely she’ll come to *you* (or use your insurance at a regular doctor) if it is.

Which brings me back to my beautiful Sunshine and Daisy.
How my heart aches for them. How I love and miss them- especially during this time of year.

When I got married to the love of my life I was one month shy of my 29th birthday.

I marveled at the time to a friend that, after a decade of dating and long-term boyfriends- (I was a serial monogamist) I had never gotten an STD or, thankfully, been pregnant.

I’d “made it through” my sexually active single years without any catastrophes and was now getting married. A small amount of luck coupled with a hefty dose of wise choices. All was right in the world.

Our first daughter arrived 18 months after our wedding. Perfect. We were perfect. Life couldn’t be better.

A year after her birth we conceived the twins. Oh, identical twins! Look at us! Clearly, we were chosen! We’re amazing! Fantastic! People go crazy for twins! We’d be so popular! Everyone was gonna wanna talk to us, know us, be us! I knew that must be true because all my friends who had twins regularly confirmed it. But shhhhh… It’s a specialness that only twin moms talk about in the company of other twin moms. We don’t want to make those “ordinary” moms of singleton babies jealous. …or more jealous. Obviously they’re already somewhat jealous. Duh.

And then, from the peak of our mountain, in the span of two short months, it all went to hell in a hand basket.

TTTS (Twin-to-Twin Transfusion Syndrome) first reared its head at 16 weeks. The next 8 weeks were filled with stress, anxiety, tears and twice weekly hi-level ultrasounds at a hospital a state away.
The doctors were optimistic.
Everything looked like it was going well.
And then, to everybody’s surprise, at 24 weeks they were gone.

That’s the story I tell.
That’s the story my video tells.
That’s the story the world hears.
But that’s not the whole story of my Sunshine and Daisy.
And it’s not the whole story of why I do what I do, why I live how I live, trying to stay positive and joyful and spread light to others who are struggling through darkness.

At our 23 week ultrasound, after jiggling that ultrasound wand a little too forcefully on my giant belly, after asking me if I’d eaten anything that day (“I just had an oatmeal cookie-does that count?” “Yes.” the Dr. replied) they told me that some time since our last appointment Daisy’s heart had stopped.

Immediately I knew. Without even a split second to mourn for just Daisy, I knew what it meant.  We’d talked about it. We knew the consequences if one of the babies died without having had laser surgery to disconnect their blood flow from one another across the placenta. Laser surgury is often used to treat TTTS, hopefully saving both babies. But even when it doesn’t, it can usually be expected to protect the survivor if their sibling dies. We had not qualified for laser surgery. Our case “wasn’t bad enough, yet” to warrant the risks.

Until it was too late.

Because they were connected through a single blood flow across their shared placenta, deoxygenated blood, created at the moment of Daisy’s death, could find its way into Sunshine and create, essentially, a devastating stroke with catastrophic repercussions.

Because of the legalities of the 24 week abortion ban in NY we had less than 17 hours between the discovery of Daisy’s death and having to make a choice for our Sunshine.
And so we did. We made the best choice we knew to make in an impossible, devastating situation.
We made a heartbreaking choice I wouldn’t wish on my worst enemy.
We made a choice that would forever change me at an almost cellular level.
We made the right choice. For us, our marriage, our future, and ALL our four daughters.

Although I knew technically it was one, it was years before I could refer to “our choice” as an abortion. Abortions were something that irresponsible kids had to deal with, not married women who actually wanted and loved their babies, right?

And we thankfully had the support of those close to us. I assumed anyone in our shoes would. Surely, everyone would understand that we’d made the best, most loving and responsible choice we could, right? 

And the legal fight for abortion rights? That wasn’t MY fight. Certainly legislators weren’t trying to tell heartbroken women LIKE ME when they could and could not make a choice, right? 

Wrong. 
Wrong. 
So wrong. 

A couple of months after my loss I went to a pro-choice rally in NYC. I thought maybe I’d find people like me there. I thought maybe someone would understand. I thought maybe I wouldn’t feel so alone.

What I found were women chanting things like “Keep abortion legal…” -YES! I thought.
“For any woman at any time!”…whoa whoa whoa. 
Wait a minute. 
Not “any woman”– and not “any time.” I thought.

I’d just lost my twins – I should’ve still been pregnant with them! They wanted me to chant about “any woman at any time” when I would’ve given all the money in the world to still be pregnant with my healthy twins?
I just couldn’t wrap my head around it. I literally could not say the words. I left there numb, not knowing what to feel.

It’s taken years for me to fully understand what the abortion rights activists are really fighting for with those chants. Years of watching as legislators have slowly, manipulatively, dishonestly and frighteningly been working to chip away at our right- as individuals, as women and as families- to make these choices for ourselves.

And now I know. They’re fighting for me. And whether you know it or not- whether you WANT it or not-  they’re fighting for you too. 

I may be inclined to feel judgement towards a woman having a late trimester abortion for a healthy fetus (something so incredibly rare) or a woman who has had multiple abortions but I’ve learned that just as I don’t want to be judged for my choices, though I’m sure I will be, I’m in no position to judge others for theirs.

What I’ve learned is that those whose judgements actually impact our lives paint their judgements with a very broad brush. To them, I am no different than the woman who they categorically describe as “using abortion as birth control” or just “forgot” to get an abortion until it was almost too late. 

So as much as another woman’s abortion story may upset me, it is my responsibility to defend her rights because to the people painting the bigger picture- we are one and the same. If her rights aren’t defended, neither are mine. 

My grandmother is a Holocaust survivor. She’s told me about watching, with her own eyes, Jewish people beg for their lives from the Nazis. They were so assimilated they barely thought of themselves as Jews. “Don’t kill me! I’m not Jewish!” They cried.  But to the Nazis, they were Jews. And they were the first to be shot. It didn’t matter how they saw themselves, it only mattered how they were seen by those who attempted to control them. 

You may think this fight for abortion rights isn’t your fight but you’re wrong. As women we have a responsibility to one another, because to those making the rules, we’re all the same.  Just because you can’t imagine needing a Planned Parenthood or an abortion, doesn’t mean that you won’t personally suffer the consequences of not having access to one.  planned parenthood-02

So, I’m sharing their video and I’m sharing their story. Their WHOLE story.
I share because TTTS is a motherfucking asshole and I want anyone who knows anyone carrying identical twins to make sure they know the risks and are receiving appropriate care.

 

I share it for the thousands and thousands of women who’ve lost babies or made the same heartbreaking choice that I did and feel alone, angry, isolated and helpless. You Are Not Alone.
I share it because I made a choice and that choice allowed me to pursue a beautiful life with no limits.  That means pushing myself outside my comfort zones and remembering to find and create joy in my every day.  It means reaching out to help others where I can, and reminding them that there is beauty in their every day too.
And I share it because among the many, many things I am, I am also a mother of two dead babies, and sharing them and the lessons they’ve taught me is how I continue to mother them.

You can fly to the moon on your talents too.

“Why do you think you’re qualified to ‘teach’ people how to grieve? A lot of people have gone through loss. What makes you think you have anything special to share?”

Many years ago, when I first shared with my mom that I felt called to help women find their way through grief… with sequins… that was her response.

My mom, my entire life, told me that I could do ANYTHING I set my mind to. She told me I could fly to the moon on my talents. She told me I could start and run a business that would make bajjilions. She is the one who encouraged me to start my own handbag business at the tender age of 21. And she told me top think BIG! “It takes just as much effort to make 10 bags as it does to make 10,000” she’d say, completely overlooking the fact that it takes a lot more effort to SELL 10,000 bags.

But that was fine- because with her (not so) blind optimism and encouragement, I believed whole-heartedly that I could absolutely do it.

When I was a teenager and painted disturbing horror-ish characters, life-sized, crawling out of graves on my bedroom wall, she brought her friends up to my room to brag about my talents.

And it wasn’t only me. When my older sister – the book-smart brainy one- was thinking about going to nursing school, my mom said HELL NO. You are going to medical school. And she did. A really prestigious one. On a full scholarship where she received her MD. and her Ph.D. Now she is a pediatric cardiologist who helps fix babies hearts.

So when my mom, for the first time in my life, questioned my ability to do what I felt I was being drawn to do, it stopped me in my tracks. It made me question myself and what the hell I thought I was doing with this Muchness thing.

Sure, if it was just about creativity and clothes, I was more than qualified, but maybe if it was about the deeper stuff, the stuff that sits in darker places, I wasn’t exactly equipped for the job. It derailed me from this goal for over a year.

LANDING IMAGES-02
But another thing she taught me is that if I’m meant to do something, I will.

I met Dr. Julie, and together we’ve been creating this Muchness After Babyloss 8-week program. Because now, the time is right.

To kick off the launch, we created a 7 day  mini-challenge, to help loss moms get to know us and what we stand for. That program is now in progress.

The feedback, response, is incredible.

Being witness to the opening up among the 650+ participants is so reaffirming.

Comments from participants like these amaze me:

“I feel like this is helping to get me unstuck. My therapy sessions do not seem to be as productive the last 6 months as you have been in three days.”

“The challenges have been tough, but yesterday, for a brief moment, I felt more like myself than I had since my first miscarriage.”

“This challenge/group has made it easier to get out of bed today. Thank you for this. From the bottom of my heart, thank you.”

“This program is already helping me tremendously! I was leery at first. Thanks for all the love”

…they make me know I am on the right path. And my mom was right. I can fly to the moon on my talents… I just didn’t even know till now what some of those talents are. I too am discovering my Muchness, more and more every day.

If you are feeling called to go deeper into your healing journey after loss, we (Dr. Julie and I) hope you’ll consider Muchness After Babyloss.

There is light and life and joy and purpose after loss. We want to help you find it.

We are hosting a free confrence call this evening where you will get to hear from myself and Dr. Julie and ask any questions you may have about the 7 day free challenge or the 8 week course which starts May 18.

Want to find out more? Comment below or register to get call information emailed to you.

Why are you such a Judgy McJudger?

When I speak publicly or lead workshops one of the things I get asked about often is how I walk out the door, wearing my muchy Muchness, and don’t care what people think. The question itself is sorta a backwards compliment, but I’m not picky. I’ll take compliments in any form. :-)

Now, I have an answer to this…. or the parts of ideas and thoughts that have pieced themselves together into an answer, and I’ve become so subconsciously aware of when people are thinking this, that I sometimes bring up the topic on my own in talks.

It basically boils down to this:

When I proactively make a choice to forget to judge others, somehow that makes me forget that they may be judging me.

It doesn’t happen automatically- there are certainly times where I stand in my closet and think “God- if I wear that, what are “they” gonna think?” but then I remind myself that just because “they” may wear beautifully tailored clothing, with perfectly coiffed hair from the salon and impeccably polished fingernails, doesn’t mean “they” are a judgmental bitch. Frankly, if I assume “they” are, than what does that make me? I’ll tell ya what…. a judgmental bitch.

I get that this is not so simple. I get that there are a lot more layers to this “who am I and how do I fit in with the world and people around me” conundrum, but frankly, I don’t have time to be doing that kind of math and emotional spelunking.  Besides, I indulged those thoughts for years. I was left wearing gray and feeling invisible and like crap. But hey, at least no-one on the outside of my head was judging me, right? 

So what do I do? I look around my closet, pull out something that makes me smile, is clean, weather appropriate and meets the general, broad guidelines of “appropriate” and walk out the door, reminding myself that everyone is human and sparkles make me happy. Anyone who wants to judge me behind my back just needs a little Muchness in their lives! (and PS- while you’re back there, don’t forget to kiss my muchy ass! :-) )

So last week I went to an incredible event- the Mom Grows A Business Conference in White Plains NY. This is me on that day.

photo copy 2

I was a sponsor of the event, so I had a table full of Muchness Stuff, but what I didn’t expect was to be called on stage to share The Muchness Movement and my story.

But I was, and so I did.

And in that moment- that moment where I felt pretty effing awesome about being confident and experienced enough to grab a mic and hop on stage unprepared in front of 300+ entrepreneurial woman and keep my cool, I was being judged.

Probably by many, many people.

But only one decided to share it on her blog. (That I know of.)

And while I certainly could have assumed that I was being judged, assuming it and reading it in black and white are two entirely different things.

As I read her post, I got a little hot under the collar, ya know? I tried not to get all tense, or start second guessing my decision to wear something I KNEW would set me apart from the…. other women at the event.

OK- now before I go any further I want to point out a few things:

1-  Despite what she wrote, I was not wearing vertical AND horizontal stripes. Just horizontal…. with a zebra striped Muchness Band. So sue me.

2- The idea of being styled by a carefree, excited-about-life two year old doesn’t really bother me that much. Better that than the personal shopper at, um…. White House Black Market. (hello….color?)

3- I didn’t have a miscarriage at 23 weeks. In-utero losses past 20 weeks are considered stillbirth. And I was 23.5 weeks. It’s a small difference but important to me.

I wear what I wear because I believe what I write, what I speak, and what I feel. I wear what I wear because once people are done judging me from afar, they may just get close enough to know why. Or I may get lucky enough to get on stage and share it with them. And sharing my Why is why I am here. Because my why seems to open people’s hearts. Because it helps people lower their own barriers, drop the walls and judgements they have built around them that stop them from… well, from doing so, so much in their own lives, with their own truths, hearts and talents.

So…. yeah. In the end, it was a pretty complimentary post- Wanna  see what lesson this woman learned about her own Muchness? Go. :)

PS- If pre-Muchness Tova saw me now, she would totally judge me. But frankly, she was kinda a judgmental bitch.

Do what you think you can’t do.

It’s 12:22 on Saturday night and I’ve been working and working and working- and I still have a lot of work ahead of me, but I just finished something big and wanted to give myself a little pat on the back before moving onto the next thing I gotta work on. I logged on to FB for my “fix” but just wasn’t feeling it. The fact is, I just felt a need to connect with you. The people who really know The Muchness and signed up to hear from me. 

About 5 minutes ago I put the final touches on the free Mother’s Day Muchness after Babyloss Challenge. As I scheduled that final email to send, confirmed all the raffle dates and blog posts were properly set up, I felt a rush of pride and anticipation and just wanted to jump up and down and give someone a hug.

But everyone around here is asleep, so I’m reaching out for a virtual one instead, I guess. 

While the message of The Muchness is without a doubt for anyone who resonates with the idea of losing their Muchness (and I have yet to meet someone who doesn’t,) I’ve been wanting to create a program for loss moms for a while and feel really proud that I finally am. This Mother’s Day Challenge is a pre-curser to a more intense and personal Muchness After Babyloss Program that will follow. (I’ll tell you more about that in the upcoming weeks.) 

Connecting with Dr. Julie Bindeman, a psychologist and 3x loss mom who works with families coping with loss and complicated family planning in her day-to-day practice was a real gift. It gave me the courage, framework, and accountability- to take what I know from my own experience and share it in a way that I know can help people. On top of that, being able to combine the message of Muchness which is such a heart-centric thing, with clinical data and her years of professional and personal experience around this subject has been incredible.

Ya know, there’s always reasons to be afraid. Always reasons not to do what your heart is calling you to do. Always. 

But  if there is something your heart is truly calling you to do, please know- there are also so, so many reasons to do it.

Sometimes those reasons are intangible, illogical or other people will think you are bananas. 

Do it anyway. 

I was terrified to create a program for loss moms. Despite years and years of connecting with other moms who’d had losses, despite being one of them, I was (am) still scared.  I know that there is so much we struggle with, issues so real and painful, the idea that anything I say, no matter how glitter coated and sincere, may help is still hard to fathom. And it’s scary for me to put myself out there like this. But it’s what I feel called to do. And despite (or because of?) the fear, it feels pretty good. :) 

When I left my job 20 months ago, I was also terrified. Although  people congratulated me – said it was so brave, the truth is, staying there terrified me even more. Having more of those stupid panic attacks under office tables terrified me even more. Some may say brave. Others (particularly those related to me) may say stupid. I believe, at that point, I had no choice.

And so here we are. There are days I panic, but I don’t have panic attacks. Because this road, though bumpy and uncertain, is the right road, one way or another.

I hope you are on your right, albeit bumpy road. And if you know you’re not, I hope you find your way to it…. scratch that.  I know you will. 

Thanks for hanging out with me while I continue to figure this whole thing out, and if you are a loss mom and want to join me, Dr. Julie and over 650 women (so far) that have signed up for this challenge, you can do that and share it with others who can benefit right here. :)

Mothers day FB-06

Muchlessness stroll down memory lane.

Pre-Muchness.

Zemanta Related Posts Thumbnail

I was looking through old files to put together on my new portfolio site tovagold.com (coming soon!) and I found this picture I didn’t know existed of me pregnant with the twins at work. This must’ve been shortly before they died. I see so much rumbling below the surface when I look into this woman’s eyes… finding this today is ironic, considering the post I wrote yesterday. I’m wearing three shades of muddy green and nasty gray sneakers, and something is seriously wrong with my hairstyle. Total Muchlessness.  I’m holding a bag full of binder clips. I used those to anchor clothing behind my models back when I was taking pictures to be used on the packaging for the apparel I had designed. The clips made the garments hang nicer, so I would have to spend less time photoshopping. This was the test shot to check the lighting. (Obviously not great lighting.) I remember this day. I was committed to getting those pictures. I cared. I remember that I sat on the floor to get the shot. My tummy was so heavy I asked the model for a hand getting up. And then I got down again. And up again, swinging around each leg, one at a time and pushing myself off the floor with my hands. I wasn’t more that 22 weeks along. How did no-one see what was about to happen?

Talking to babyloss parents about their joy (a video)

What an amazing weekend. For almost a year I have been looking forward to speaking at Forever In Our Hearts- a baby loss memorial walk in Wisconsin. It was such a thrill to be asked and I worked on my speech for months and months leading up to the event. And then, a week before I was set to fly- I trashed everything I’d written and started from scratch. I knew that to be impactful and also not completly freeze up in fear, I’d have to talk from my heart. I’d have to figure out and organize the thoughts and beliefs and experiences I wanted to share and then I just had to get up there – let my girls guide me- and share them.
And I think that’s what I did.

I poured my heart into it and I’d love if you would take a few minutes and watch my talk.

I was so grateful for this opportunity and afterwards, so many people came up and thanked me.
Thanked me.
One woman thanked me for giving her permission to find joy.
Nobody needs my permission. It’s inside of you. 

Another thanked me for reminding her its ok to bring light back into her home.
Friends, it’s OK. That’s where the light SHOULD be. 

And others asked me how.
How do you start?

How do you start to see the moments of light when they’re trapped in and filled with the murkiness and weight of grief?

And I told them-
it’s when we are trapped in the utter darkness that the tiniest little spark gives off the most light.
If you’re looking for a glorious sunrise in the middle of a star-less night, you will continue to be disappointed by the darkness.

darkness

Instead, search for the tiniest little star and move towards it. As you get closer, you’ll realize it’s bigger than you thought, and surrounded by many other little stars you couldn’t see before. Keep exploring those tiny little stars. You may not find the sunset you thought you were seeking, but you may just discover the light and beauty of a moon you didn’t know was there.

Finding God inside Babyloss

Last week was Rosh Hashana, the Jewish new year. Rosh Hashana is considered a joyous holiday, filled with family, food and the promise of new beginnings.

This Friday is Yom Kippur, the holiest day of the year on the Jewish Calendar.

The 10 days between these holidays are known as Ten Days of Repentance. These 10 days are the time to ask our fellow man forgiveness for our sins from the previous year so that God may grant us long life and prosperity and all that other good stuff the following year. Yom Kippur is the day we ask God to grant us a good year and long life. At the end of the holiday, God seals the book. Your fate for the year is written, can’t be changed. No more begging or pleading or asking forgiveness. Case closed. God shuts the book, puts it up a shelf and goes on a beach vacation. It’s a lot of pressure figuring out everyone’s fate for the next 365 1/4 days within a 10 day time frame.

Of course, I’m being a bit glib about it, but that’s basically the gist of it.

This will be the fourth Yom Kippur since our twins died.

The last time I went to temple was Rosh Hashana, 2009. With my tremendous belly leading the way, I pushed our toddler in her stroller as I walked to synagogue. How clearly I remember my husband asking if I wanted him to push and I said no. I was actually feeling so much better that day than I’d felt for months. The pressure in my tummy had lessened and, as I was getting ready to enter my third trimester, was hopeful that I’d finally start feeling a bit more comfortable. Plus, I added, pushing the stroller helped me balance my weight. Yup. I was finally feeling good.

We got to temple and started seeing friends and acquaintances, many of whom didn’t know I was pregnant. “Identical Twin girls!” we told them excitedly.

I felt very blessed that day, happy and optimistic about the future.

The Monday after Rosh Hashana we went for our weekly ultrasound. It was the first ultrasound since they first discovered signs of TTTS that I was feeling confident and happy. I’d been feeling so much better, certainly the ultrasound was going to reveal that our fluid levels had balanced out and our girls were thriving.

But I was wrong. I was feeling “better” because Daisy’s heart had stopped beating.

The next day we lost Sunshine.

The two days after that were spent visiting the hospital so I could be dilated and prepped for Friday, the day we would ultimately say goodbye to our daughters, without ever even seeing their precious faces. (A decision I will regret until my dying day.)

Two days later was Yom Kippur. I didn’t participate. Instead I spent the day on the couch, watching a Law & Order SVU Marathon, eating Fruity Pebbles, drinking wine to stop the unbearable pain in my heart and popping Advil to stop the unbearable pain in my breasts as they filled with milk to feed two babies who weren’t there to be fed.

When I think  about my loss, I think about September 25th as the day we said goodbye. Every year I watch the calendar with my eye on that english calendar date, and yet, every year I am surprised to find myself walking through the shadows of grief during these 10 days between Rosh Hashana and Yom Kippur, regardless of the date on the english calendar.

For the last three years I have held a lot of resentment towards God for forcing my girls to die before I was even given the chance to pray for their lives on the holiest day of the year.  I haven’t actually participated in either Rosh Hashana or Yom Kippur since that year, sort of my FU to God, because I know he cares about those things and is losing a lot of sleep over it.

Sometime this past year someone told me that people who die during those ten days of repentance are considered especially holy and their souls are given a direct pass straight to heaven. Hearing that made me cry, as it continues to do even as I type this, because it’s something I long to believe, even as I struggle with my own belief system. When I think about that, it allows me to shift my perspective a bit and see how losing them at the time when we did made way for a new year that was filled with life. My youngest daughter, Liat, was conceived four months after our loss and was born shortly after Yom Kippur the following year.

Molly and Liat are getting bigger and started attending Jewish School this year. They’re learning about the Jewish Holidays and God and all that stuff. It’s going to force me to come to terms with a lot of things that I’ve happily avoided thinking about for the last 4 years.

What am I going to do this Yom Kippur? I don’t yet know. I guess I’ll play it by ear and base it, in part, on what my kids expect to see me do. Does that even make sense? I’m not sure.

But then, I’m not sure about a lot of things these days.

At the one year anniversary of their death, I made this memorial video to share Sunshine & Daisy’s “life.”

Thanks for watching it.

How are you using your TODAY?

My great uncle died one morning last week. That afternoon they buried him. Jewish tradition has you bury the deceased as soon as possible after they pass. They don’t dilly-dally. Chick-chock.

This uncle was the brother of the grandfather I mentioned here, and the son of the great-grandmother I mentioned here. (Who apparently, was totally obsessed with sparkly clothing. Go figure.) My grandfather is one of nine siblings and this was the youngest. He was just a baby when his family was brought to the concentration camps in Nazi Germany and it’s a true miracle that he, or any of them, survived.

I remember being a little kid and going to his house. There was a pool and a lake where some of my cousins would go fishing, but I never did that because the worms were so gross. I was heartbroken to hear he’d died, He was a funny, big hearted guy who loved to smile. One of my first thoughts after hearing he’d passed was “He knew about the twins so now they’ve got yet another amazing person to look out for them.” (How I manage to make this about me might be a little disturbing, or at the very least self-indulgent, I know, but I’m just being honest- that thought crossed my mind.) 

Anyway, we were at the cemetery early and I found myself wandering through a section with really, really old headstones. Some of them were 200 years old. 200 years!! It’s amazing that somehow we have found enough land upon which to bury all the bodies of all the people that want to be buried and that there are not graves like, everywhere you step. I mean, logistically, how does that work? When do they run out of space to put these people? It boggles my mind.

But back to my point. I was looking at the headstones from 150 / 200 years ago and I was surprised to see how many of them wrote out how long the person lived for.

You might be confused by that sentence, after all, basically every headstone shares the dates of the person’s birth and death, right? Why would I be surprised by that?

But that’s not what the oldest headstones said. They actually shared the number of years, months and days that the person lived. Look:

Screen Shot 2013-08-06 at 11.56.34 PM

John Cooper died on March 6th, 1883. He walked this earth for 67 years, 10 months and 6 days.

Peter Foushay died on February 25th, 1815. He walked this earth for 45 years and 2 days.

Peter Foushay died on February 25th, 1815. He walked this earth for 45 years and 2 days.

There will come a day when each of us has had our fill of days when we are blessed to walk this earth. When you see it, like that, engraved in stone- stone that has sat in it’s place for 200 years it really hits home.

Every day is a gift. Every day is an opportunity. Every day is one day closer to our last day. When my day comes I want to know that I LIVED those days. 

There is something about marking time on the gravestone in that way that I really do love. Defining our time in the number of years and months and days spent here, on this earth, in this body, somehow it makes it feel like it’s just part of a longer, infinite, beautiful journey. A life, not defined by the dates on a calendar but defined by the time spent living it. 

When your time comes, will you want to look back on the amount of time you lived, or look back on how you lived in the amount of time you had?