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

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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.

Find something to hold in your hands.

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Another tough week here in America. Even for those like me who have not been directly affected by a natural disaster or a horrific act of violence, these events touch us on a deep level. We are trying to grapple with the enormity of these occurrences and we are also trying to figure out how to work through our own personal hurricanes and forest fires. Those that rage behind closed doors in our homes or consume our minds. 

How to deal with it all? We need to figure out how to be present. We need to figure out how to slow down. We need to figure out how to serve our community. We need to figure out how to speak up. We need to figure out how to find joy. And on and on.

It's enough to make anyone want to hide in bed or head straight to the freezer for the Snicker's ice cream that's lying in wait. (Or the kids' Halloween bags - I know you are with me there.) I know what works - get outside for a walk, write in my journal, find things I am grateful for. But there are moments when I can't conjure the energy even for these things.

So, here's something I did that's helping in these moments of stuck-ness; when I feel the raincloud over my head and it just won't go away. I bought myself something that I knew would make me feel good. We could argue that spending money on material things is not a healthy way of dealing with feelings. But I'm not going to. I'm here today to say that it might boost your mood to purchase something for yourself for the sole purpose of your own enjoyment. I bought Bella Grace Magazine, pictured in my photo. The images and words within conjure a sense of peace and spaciousness everytime I pick it up. It will surely not solve all the problems of the world, but if it can get me out of shutdown mode, it is worth it. I encourage you to find something that does the same for you. Because we have work to do. xo

 

 

This is 40.

One of my earliest memories is celebrating my dad's 40th birthday. It was a surprise party and I got to lead him around to the back of the house where all of my parents friends were waiting on the deck. There were circular cement stones on the side of our house - a little path leading to the back. This is where my memory is clear, leaping from one stone to the next, each of them surrounded by bright green summer grass. Feeling joyful and special to be involved in a secret. An adult secret no less. It was 1987 and I was eight years old. 

Over the next year my husband turns forty and my daughter will be eight. I can't help but to compare and contrast my parents lives to ours, my childhood to hers. How do you measure a good life? Compare it to your parents, I guess.

Most parents want a better life for their children than they had for themselves. What does that mean, exactly? Materials things - like a fancier house, better paying jobs, a bigger retirement account? By those comparisons we are falling short. When I dive into the details of my past - that's where I can see comparisons that make sense. Like how, in his 20s, did my dad get to Yale for his doctoral degree from Buffalo, NY where his mom had recently died and his father was not exactly a model of support?

That journey must have taken determination and a deep belief in himself. I hold those values dear to my heart and try to keep them in the forefront of my day to day. It does make me feel close to my dad and like he is still part of my life when I can act in the light of his best qualities. 

Naturally, I also observed and internalized other aspects of my parents' lives that I did not want to emulate. In this instance, I'm trying to bring something different to my life based on what I absorbed from theirs. Both are important - the values we adored in our parents and the ones we have known for a long time that we wanted different for ourselves. 

What values are guiding your decisions? Where did they come from? Are they similar to the values in which you were raised or different?  Maybe you were raised mostly by your single mom because your dad left when you were five. Maybe you were adopted after ten years of infertility struggles. 

Whatever it is - your story began with your parents. Reflecting on how their choices and actions influence you today is critical to understanding who you are as a person. 

Your Story is Your Strength - I so firmly believe this. 

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I am a sacred being.

You know one thing we all have in common? That life is hard. It's full of ups and downs. Sometimes it's in the day to day - that colleague who isn't pulling his weight, who backs out of a meeting last minute to leave you in the lurch and in charge of his hour long presentation. Other times it's a pretty huge transition, like saying goodbye to the family dog who was your first child and an integral piece of your everyday. 

I'm on a quest to find more effective and healthy ways of dealing with these ups and downs. Because they don't stop coming - so I don't have time to wait until this thing I'm dealing with now passes. Writing has been huge in this. Another thing? Making a conscious effort to put myself in the same space as people who make me feel good. Who lift me up. And not in the all "everything's going to be ok" way, but in the "this shit is real and I hear you" way. 

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It's in this spirit that I share this inspiring quote from my friend Dr. Vickie. I wrote down the words during the interview for her storytelling session. That word - sacred - it stuck with me. Who me? Sacred? Vickie explained that sacred is not reserved for the extraordinary or for when we are spiritually enlightened. Sacred is allowing your 7 year son to sleep in your bed because you realize it's only a matter of time until he's grown and out of the house. Sacred is the acceptance that you are enough, even in the moments when it feels like the total opposite. Especially in those moments. 

I encourage you to listen to Vickie's story. I hope it touches you in some way like it did for me. 

A Special Birthday

A few years back I became friends with one of the most beautiful souls I have ever had the honor to meet. I truly believe our paths crossed for a singular purpose: to connect over her son Matthew's journey. I've written about our special friendship. Today I am thrilled to introduce a moving piece of writing by my friend, Kristin Theobald. My heart is full of gratitude that Kristin is my first guest essayist. Today is Mathew's birthday.


One Foot In Front of the Other by Kristin Theobald

Mike and I had a four-day long date in Denver last month. Like all good parents, we saw the opportunity of a dear friend’s wedding and ran with it. We are lucky that our kids have grandparents willing to indulge that type of adventure.
 
We talked, we laughed, we saw old friends, we drank, we hiked and hiked and hiked, and we danced some too. We experienced the breath-taking glory of Rocky Mountain National Forest. I stared from the top of mountain after mountain, at thundering waterfalls, in sun, snow, and hail, four climates in one walk, with awe, admiration, and wonder.  Along with the array of emotions brought on by the magnitude of the presence of something so much bigger than myself re-emerged the crushing understanding that the God who created this vast glory, the architect of all beauty, didn’t build Matthew’s internal organs in a way compatible with the life I dreamed of for him and for us.   
 
My sweet partner is in his element here. This man was made to hike mountains and has a deeper appreciation for nature than one might think humanly possible. And on long, arduous hikes, away from technology and rules, it is very easy to remember that we are both very funny and rather strong.  After hiking 15 miles, as I was traipsing down what I thought was the final path, Mike said, “What if I told you we had to do it all over again?” Without a moment of hesitation I said, “Of course we could. It’s just a matter of putting one foot in front of the other.”
 
As soon as the words came out of my mouth, I realized this is who I have become.  The line in the sand of my life is September 18, 2014.  My whole being straddles the line of before and after.  Surviving the after is literally putting one foot in front of the other, regardless of my internal monologue. 
 
Most days, I am quietly re-playing moment after moment of Matthew’s life at CHMC.  Replogle, Vent, G-tube, TE fistula, Craniectomy, ECMO. May you never know what these words mean.  Some days, I am paralyzed by the deafening voice in my head screaming at God that He got it wrong.  Tonight, I am seeing 3 a.m. because the sheer panic of living life without him has stolen my breath and brought me to my knees.
 
But the truth is, the after has to be more than that. God and I are a work in progress.
 
September 18. Bed-rest and contractions followed by the epic gush that few women will know of water grossly breaking. The rush to the hospital, the ambulance to Children’s, the abruption which aptly describes not only our lives on the edge but the way we crossed the line forward into the beginning of the after.   But most of all, the “sqwauk”. The very unexpected, against all odds moment Matthew “sqwauked” for an operating suite of 30 of Children’s finest nurses and surgeons. The sqwauk that let me know that we would both live to see another day. 
 
The rest of September is a blur, but if you have the time I can describe for you every moment, every difficult conversation, every rounds, every ounce of breast milk pumped and delivered by G-tube fortified with preemie “jet-fuel.” More medical drama than the average medical student will witness in a lifetime.  But we made it to October and November, our sweet spot.
 
Matthew spent October and November growing and getting to be a baby.  Between Enterovirus and flu season, the CHMC restrictions meant that many of the people I love in this world never had the chance to hold him or even meet him in person. We are lucky that they carry him in their hearts although they were banned from holding him in their arms.  I would literally cut off my arm to go back to those days. 

He was so smart and so darling and so fragile.  I believed that his visual tracking skills of his obnoxiously large crib mobile were beyond compare! Like his siblings, he was strong-willed, but uniquely Matthew, he was much more sensitive.  I wondered what it would be like to bring him home to the chaos of our crazy house because he loved the quiet and the calm. 
 
My dream life centers upon the nights there were nurses willing to look the other way and we **gasp** snuck all six of us, four pajamm-ied children, into his NICU room for movie nights.  The hand sanitizer I would bathe the older kids in to make them “safe” is still used in the entire Children’s system and the smell brings me to hysteria these days.  James and Abby, then six and four, could not have been more proud. It is hard to explain though, what it means to have a six-year-old who can adeptly interpret a pulse-ox monitor.  If I could return to any moment in my previous life, you’d find me in mid-November, in a rocking recliner with Matthew snuggled into my chest. Yes, we were dragging a replogle and a nasal cannula, yes, we were accommodating a G-tube, yes, we were 10 miles from Madeira, but we were HOME.
 
Matthew had big, gorgeous, ancient eyes. He had the deep, wise, eyes of my grandfather, and if I am honest, I always knew his eyes and his soul were very old for this world.  He gave Mike and I the gift of his first smile at the same time, which with Mike’s job and three kids at home, for us to both be present to witness was amazing and perfect. He gave us hope. The kind of hope that buys bunk beds and makes plans.  The kind of optimism that we were going places. That HOME could become one location.          
 
December meant surgeries, but I believed in Matthew, and his penchant for beating the odds.  Our Christmas gift was to be one last surgery and our ticket home.  December 16, after a 9 hour surgery, Dr. Lim brought us in and told us the surgery was successful, his esophagus was connected.  It was long but had gone well.  I was able to breathe for the first time in 3 months. 
 
The following days and weeks are the works of nightmares.  Ultimately, his one lung was never able to recover.  Matthew Glasgow Theobald died from complications of a pulmonary hemorrhage on January 14, 2015.  He had left us.
 
So here we are three years later.  One foot in front of the other.  Looking for meaning, but mostly just surviving. With a side of awe and beauty and wonder.
 
Matthew’s life was a gift. Parenting a child in heaven makes me a different parent to the three I have at home.  Every parent cherishes their child, but having Matthew has forever altered our appreciation of tiny moments and good health.  One foot in front of the other takes us on this journey back to him.  Being witness to his life shapes our understanding of the universe and our need to connect with those we love.  The road is long, and I struggle every day to understand how to honor Matthew in our life along the way. But I am pretty sure the love of our people will guide us along the path and bring us all home.