He won't even sit with me.

I feel like I need to qualify some things before I hit publish on this piece, but I'm trying to just let this one be. Once on an evaluation form for a graduate class I taught, a student wrote that I spend too much time introducing the subject instead of just getting to it. So, just one quick thing and then I'll get to it: I have my mom's blessing to write more openly about her condition and its effect on our family.


We were riding in the car together. I was taking her home after my daughter's birthday party. It had been a fun, if chaotic, evening. Lately, Mom has been getting worn out quickly during these family functions. Worn out leads to confused leads to agitated so I was eager to get her home and settled.

She said, I want to talk to you about Griffin. Her brain is so tricky, because it is still able to formulate such complex thoughts in one moment and has complete tunnel vision in the next. She's able to convince renowned experts in neurology into thinking she's much more capable and independent than is actually the case. I've found that conveying the nuance of my mom's condition, a rare form of dementia, is like trying to swim in mud. The little moments are revealing though.

Ok, I reply, let's talk about it now. I'm not sure what it is about my seven year old that's bothering her. He won't talk to me or play with me anymore, she says. Her tears come immediately. We used to play games together all the time and now he won't even sit near me. If I sit near him he gets up and moves. 

I want to say oh, that's not the case at all. But she's right. I'm surprised that she's noticed because her condition makes it hard for her to judge social interactions. I take a breath and say, I've noticed too. It's confusing for them, Mom. It's confusing for me, so imagine how hard it must be for the kids. He doesn't know how to act.

But I'm still the same person, she says. I'm still me.

No, you're not. The thought is quickly formed in my head, but I catch it before it comes out of my mouth. This is the person that I considered my closest friend in life, the person who knew me best in the world. For a decade bits and pieces of her have been slowly falling away. I try to be present and be grateful that the decline has been so slow. When I do allow myself to reflect, it feels like I'm grieving. She seems unable to understand that I am deeply sad about her decline. Maybe she's incapable of this type of empathy now because of what's happened to her brain. Or it might simply be that it's hard to acknowledge that this disease is affecting her daughters and grandkids on a deep level. A particular cruelty of this form of dementia is that she herself is fully aware of the abilities she's lost.

I've noticed this happening more often. She says something with which I disagree, where the whole situation is not being represented, and I don't know how to respond. I feel so stuck. Every response is the wrong one. Reminding her that she can't play any games with the kids because she is essentially blind and can't see the faces of the Guess Who game much less have the coordination to tap the figure down is not constructive. Going along with her head in the sand view that, Everything is just fine, doesn't keep me in integrity with myself. I think I know what she means when she says this - that at her core, the truest essence of herself, she is still the same, even as all the former capabilities slowly get stripped away.  I've started to stay silent in these moments, all these thoughts whirling in my head

Lots of us are dealing with dementia in a loved one. I became a member of the sandwich generation earlier than many. I was 30 and pregnant when my mom was diagnosed. I have a wonderful support system and a terrific therapist. Still, I feel an internal drive to write about it to bring it out into the light. If you are experiencing something similar know that I see you. I see your shoulders hunched forward and the rise of anxiety in your chest when your phone pings. I see your struggle.

Do you know someone who would benefit from reading this? Please share. 

Help me decide!

I'm squirreled away hard at work getting my class content into a new format for my online class coming this spring! I'm making great progress and would love your insight. 

Which of these versions do you like best for the title slide? Let me know in the comments. Find out more about class here. Hope to see you there in a couple of weeks.

We Run For Them

Orchid Story started by telling my story of my experience with my son's diagnosis of congenital heart disease. Like all stories, this story keeps growing and evolving. My husband has taken hold of it in a new way this year - he's running the Boston Marathon to support the Ethan Lindberg Foundation. I feel compelled to share this video here with you all. #werunforthem

What is the reason why?

I love, love, love when I get questions from my community. It helps me create new content and it sheds light on where I can be more clear. 

One question that came up: 

What are the different ways to use your story?

This is so important to consider. But before we get to the different ways to use your story, I suggest you start with this question:

What is the reason WHY you are telling your story?

Let me get a little more specific. Let's say the reason why you are telling your story is because you are a business owner who wants to connect on a deeper level with your clients. What you can do with your story when you come at it from this angle would be much different than if your reason why is to dive into a struggle you've experienced because you want to find new meaning in it.

I want to help you explore this for yourself, so I made you a worksheet to help you answer this question. We'll get more specific about what to do with your story in upcoming posts.

Get the worksheet by signing up for my newsletter before Thursday Feb 15th at 5pm EST. 

You'll get my Storytelling Insights download immediately and I'll send you a personal hello email with the Reason Why worksheet attached in a second email. Already on my list? Check your email - it's already been delivered straight to you!


Love is Openness

We can't know how our actions will affect the people and the world around us, but I'm seeing real evidence that happens it all the time. The ripple effect is alive and present. I made a commitment to myself this year to write about my personal stories that I've held tight, not wanting to shed light on them. My reason for not sharing has been that I don't want to hurt people I love - because all stories are told in relationship. But I think that's been more of an excuse than a reason, so here I am trying today. This story describes why it's so important to me that I do. 


Six years ago I became friends with a stately man in middle age with a bald head, glasses and a bow tie. And a lovely singing voice. I was drawn to this man because of the way he spoke about his young adult son, J, who was facing the most serious struggles with life. The kind that push a person to the edge of their existence. The kind that come with phone calls in the middle of the night. His father talked openly and I didn't sense the shame that so often surrounds these conversations.

But, oh the pain. The pain expressed by this man was so raw and so embedded in every fiber of his being. I recognized that pain almost instantly. And I connected to it.

I had a three year old and a one year old that year. I knew that my three year daughter was not thriving in the way all my friends' three year olds were thriving. Life seemed too much for my girl to bear and so she was in a constant battle with it. Which meant she was in constant battle with me, her mother. I couldn't fix it. I had been trying and trying for three years. I wanted to fix it so badly and I was so ashamed and wracked with a sense of lack that I couldn't. If she needed help that meant that I needed help too. In my mind that was equivalent to failing as a mother.

J's story was woven into my heart the first day I heard it. His father helped me to accept that getting help was not a choice. It was a need, a necessity. I don't know many details of J's life but I don't need to. His father gave me an enormous gift of showing me how to live as a parent of a child who is in pain. I don't think I could see my daughter's challenging behaviors as her own pain back then, but my eyes were opened to the idea of figuring out an alternative way to do parenthood. J's father showed me that it's possible to be grieving, to be joyful, and to be loving all at the same time.

It may seem odd to have made this strong connection between our experiences. He was parenting a 20 year old and I a three year old. This the beauty of love and kindness. We don't need to understand it. We only need to be open to receive it. And we need to be willing to give it of ourselves. 

I'm still learning how to parent my child who continues to experience the world differently than her peers. I still want to solve it and put it behind us, but I'm starting to understand that is not how this works. I have enlisted many helpers and healers in the past six years. A desire is growing stronger within me to live joyfully in this own life of mine and not let the weight of this keep me under the surface. 

Earlier this month, just as 2018 was waking up and stretching its limbs, J released himself from this life. He was 26 years old. I know this is not the end of J's story. He will continue to touch me and the many others that survive him. His story will ripple. 

I've seen his father since that day. I see him in deep, deep grief and joy and love. 

Your story doesn't end.

Last weekend, in sub-zero temps, my family traveled north to Boston. It had been seven years, exactly, since the time we spent there when my son Griffin was born. It was a weekend to feel all the feels. 

My husband is running the Boston Marathon this spring in support of the Ethan M. Lindberg Foundation team, Team Frannie.  Our connection with the Foundation runs deep. Over seven years deep, if anyone is counting. They were the moms who connected me to other moms in the early days of Griffin's diagnosis, when my belly swelled in front of me and his heart was the size of a grape. I've followed the stories of so many heart families supported by this foundation in big and small ways.

The four runners on Team Frannie were in Boston together to film a video capturing their own stories of connection to congenital heart disease (CHD). The families of the runners were invited to participate too. It's hard to put words to the feeling of being in the same physical space as these families, all touched deeply by CHD, who have chosen to put their energies towards helping other families. Well, and towards running many, many miles. Several of the moms with us last weekend, including Ethan's mom and Frannie's mom, have lost their children to this disease. So yes, there is a great sadness. And, there is also a great hope. A great light. That from the deepest, darkest place a tiny seed can be planted. It may take a long time, but that seed can grow. The sprout may be tiny and it may be surrounded by grief, but still, it can grow. These families are a living testimony that the from the deepest pain can come the most beautiful joy. And yes, that joy is tinged with sadness, because life is both, not either or. 

The memories of being in Boston for Griffin's birth came rushing back. I have visual memories of that time and visceral memories that I feel in my body. There was so much uncertainty, deep, never-ending uncertainty that we had no choice but to manage in the moment. And now, seven years later, we have this joyful, endearing, sweet, sweet boy. Who still has not had an open heart surgery. 

We are so grateful and happy for Griffin's outcome. And I am so affected and saddened by the losses of other families. Again, it is both. I hold both of these thoughts together anytime, literally, anytime, I think of Griffin's journey. There is still so much uncertainty, but I have become much better at dealing with it and of course the intensity is not as strong. I think, well, actually I know, I am a better person for facing it and turning it around and around  to examine every day. 

Our stories don't end. I will likely keep rewriting my story of being a heart mom for the rest of my life. There is hope in that for me. That our stories can always be changed, they always will change. And that we can influence them, we have that strength. We can reach out to another mom to share what we've learned, we can choose to advocate for a cause we believe in. We can nurture the seed planted in the dark. 

p.s. One of the highlights of the work of this Foundation is a retreat for mom's who have lost a child due to chronic illness. If there is someone you know who might benefit from this retreat, please pass along this info. Moms are the backbone of our communities and we need to support them. http://www.ethanlindberg.com/retreat/

A SpongeBob debacle

Did you, like me, have grand plans for the week between Christmas and New Year's? I was going to spend lots of time cuddled up with a blanket and a cup of coffee, writing and coming up with some amazing content to share with you all. Make a marketing plan for my upcoming writing course and lay out the agenda for a workshop I'm hosting this month. 

I didn't know what day it was let alone have space for creativity. What I did have was lots of time with my family. Let me tell you about one of those days.

We gifted tickets to our family for the SpongeBob musical on Broadway in New York a couple days before New Year's. I had found the tickets at a really affordable price and I was so excited to be in NYC to see this show in which many inspiring musicians collaborated, like Sara Bareilles and John Legend. We finally got to the theatre, all seven of us, after driving, parking, cabbing, walking, stairs. The seats were in the very.last.row of the theatre. So high up that you literally had to lean forward to see the front of the stage, but everyone else in the balcony below you is doing the same so it really doesn't help. We get everyone in the seats for two minutes and realize they have boosters for the kids, so off my husband goes in search of them. My 8 year old daughter, Carly, starts moving from seat to seat, shuffling all of us in our tiny space. I realize Curt's been gone for 15 minutes and he texts saying they won't let him back up yet. My mother-in-law starts feeling ill and heads for the bathroom located directly behind our seats. Carly's getting really antsy and decides she needs to climb the five flights of theatre stairs, so she sprints away with my brother-in-law. My sister-in-law leaves the theatre to search for medication for her mom. 

It was quite a scene. Only me and my 6 year old son, Griffin, saw the majority of the show. A part of me was really disappointed. Our whole trip centered around this event and here we were with everyone miserable and scattered. But a little part of me said, "Enjoy the show. You have family here to help you." And I (mostly) did. I loved the show. Griffin even sat on my lap for 20 minutes, which I relished knowing those days are coming to an end. 

The fact that we had really crappy seats? It turned out to be the perfect spot for my antsy, stomachache-y family. I can't imagine being front and center while all of this played out - that would've been completely distracting for those around us. But in the way back, my family could do what they needed to without bothering anybody.

When was the last time this happened to you? We build things up in our heads and our expectations soar. Then the trip or concert or party happens and fails to live up to those grand ideas. Science shows it's good for us to plan and to anticipate fun times, so I'm not suggesting you stop doing that. Maybe having more realistic expectations about how things might play out would help.

Or maybe asking yourself, "What can I enjoy in this moment?" can be a really useful tool.

Because I actually sat in a seat for the entire show as my family offered to help my daughter and mother-in-law. What a blessing and a gift. And what a shame it would have been if I chose not to receive it.



A flashlight in the dark


Here we are, the day after the solstice, when our world literally becomes a little brighter. This metaphor makes so much sense to me for the darkest times in our lives when things are bleak and despairing. If we get through the pain there is a light at the other side. We may have no sign of it, no inkling, but it will eventually come. 

In early November I had one of these nights. A night as a parent, when time stops and the world around you ceases to exist. The doctor gets disturbed by a phone call at 9pm on a Monday night. We floundered our way through and eventually the morning came. The kids were safe. 

But mental health is sneaky and hard to predict. Sometimes it feels too much to bear. If I am the one who is supposed to hold the hope and the hope isn’t there… what happens then? 

A week later I sat down for Thai food with a close friend. I let it all out, baring my soul over green curry. I didn't couch it with, "I know it's going to be ok." She listened. Like, really listened. She said yes all of this is true and here are the things that are still amazing in your life and steady, too. She held the hope for me. 

Who can hold your hope for you?

Re-visiting Believe

Last December as I strolled the streets of New York City, I looked up at the Macy's Believe sign and it hit me that I had found my 2017 word for the year. Here's what I wrote about it

This word, believe, was truly a guidepost for me. I'm better able to recall what even happened this year because of keeping this intention top of mind. I know that sounds like a stretch, but if I ask myself how I used believe to guide me, I'm able to pull out a bunch of examples throughout the entire year:

February: Believe that I have a place on stage with the Listen To Your Mother production and auditioned with 40 other women in DC. I was one of 13 women who performed in DC for the final year of the show.

April: Believe that having a hard conversation with my sister about our communication styles will lead to better outcomes and less stress. This was smack dab in one of the hardest parts of our year when we, as joint powers of attorney for our mom, were selling our childhood home in NY. From Virginia where we both live. Almost everything that could go wrong did. But that conversation stayed with us and at the end of this year I feel closer to my sister than ever before. 

September: Believe that there is still worth and value in my writing class that I poured my heart and soul into even though enough people did not enroll to make it happen. Ouch. This one was really tough. But I fully believe in this content and I'm trying again in January

See how the outcome doesn't matter too much?

Both really great things and really crappy things happened when I intentionally put my energy into believing. But I was able to work my way through the the anger, sadness, and disappointment. I didn't give up or turn my back. And I think this had something to do with setting the intention of believe

To be completely honest and upfront - lots of things happened this year where I was not acting from this intention or from any intention at all. (Well, maybe hunger or exhaustion...) I have lots of room to grow. You don't have to be perfect or aim for perfection to get started with this. It really helps to give yourself the grace to screw up and to let go of the outcome.

So... did you have a word or intention to guide you for 2017? Try looking back to see how events played out when you made decisions and connected to others from the place of your intention. I'd love to hear your personal experiences and whether you feel it's a useful practice. 

Didn't have a word or intention for last year and interested in trying it for 2018? Let's do it together. I'm still looking around for mine. I was introduced to the idea of a word for your year from Susannah Conway (who I don't know personally but whose work totally resonates) and she has some really beautiful resources you could check out to get you started. 

Find Your Helper Along the Road of Trials

As you (our heroine), find yourself along what Joseph Campbell calls, The Road of Trials, you will be encountering lots of suffering. That's one of the reasons I like the Hero's Journey - the suffering is an acknowledged part of it. The Road of Trials is represented in the image as Challenges and Temptations. You'll notice there are also Mentors and Helpers along this road. These figures vary in their description depending upon whose writing you read. But I like to think of them pure and simple as helpers or teachers. 

 Thanks  Wikipedia!

Thanks Wikipedia!

So, as you are working on re-writing your story (you're doing that, right?) the template of the Hero's Journey can be really useful. Especially if you aren't sure where to start and how to organize. The more I dive into this, the more I like using it as a template because of these Helper figures. The thing is that when you re-visit your story, you are likely recalling a lot of pain. After all the reason you want to re-write your story is so that you can find the glimmers that existed amongst the pain. 

While you are re-engaging with the suffering you experienced, recall a Helper. Who was there to hand you a flashlight in the dark? Who called you out of the blue when you were driving along the highway, tears streaming down your face? Your Helper might be a good friend or your Helper could be a complete stranger whose gesture reminded you of the goodness in the world. 

I know re-writing your story isn't easy. The Road of Trials can be dark and scary. There is no way around it though. The only way to get to transformation is to keep going down your Road. In doing this work, remember a Helper who nourished you along the way, who provided you with sustenance to keep going. 

Keep Going.

The number one reason why I write is for myself. To get in touch with my thoughts, to process my emotions or sometimes to simply get something out of my head. Because I also want to share my writing and build my business, getting published is important to me. 

We hear stories of rejection, we know rejection is part of the writing process. My kids and I went to see prolific children's author Dan Gutman who told the story of his popular My Weird School series getting rejected 10 times! 

When rejection comes knocking on my door (and it does, often) it feels awful. I question myself and my writing. I wonder if I'll ever get established as a writer, if people will take me seriously. In many cases the publication to which I'm submitting doesn't even send a rejection letter. Simply nothing in response to that piece I poured my heart into for 20 hours over the last three weeks. 

Alas, there is a silver lining if you pull up your bootstraps and keep writing. An email actually arrives in my inbox! Better yet, they've said yes! This feels so good. And it happened this week! 

Go check out my article, There is Always a Choice, on the beautiful site Kind of Matter. I started writing this article on October 16, 2015! Wow, that is a long time for a story to percolate. I'm proud of myself for not kicking it to the curb and allowing it to exist in purgatory for so long. Patience is key in writing, and if patience is a daily practice for you (like me) this is not an easy task.

So to all of us out there with writing dreams in our hearts - to you and me both - keep going.