Four Seasons (and Reasons) of Boston

 
IMG_1159.PNG
IMG_1973.JPG
IMG_0949.JPG

At the end of 2017 my husband, Curt, was selected to run the Boston Marathon for the Ethan Lindberg Foundation, a nonprofit supporting families with congenital heart disease. In January our family traveled to Boston to be featured in their promotional video

 

Marathon time - our family raised over $12,000 for the Foundation and Curt finished the race in just over four hours. It was a day filled with all sorts of emotions - thrilled to be part of the event, moved by the runners persevering in freezing wind and rain, gratitude for the doctors that saved my son's life (like Dr. T pictured here), and devastated that congenital heart disease continues to take so many children away from us.

 

In late spring after a routine echocardiogram for my seven-year-old son, Griffin, we were told he needed more intensive testing. We headed north to Boston again in August for Griffin to undergo a cardiac catheterization and MRI. We knew there was a chance surgery would be indicated and sure enough, it was time. This picture shows Carly and Griffin at the rooftop garden on top of Boston Children's after we got the news. 

Fall

This week we will travel to Boston for our 4th trip in 2018 for Griffin's open heart surgery. My heart is aching and I'm scared, but when I reflect on traveling to Boston for Griffin's birth I realize what a long way we've come. Back then, we had no idea what Griffin's life would look like and now I've had the great honor of being his mother for almost eight years. This disease truly affects everyone in the family and traveling far away for care takes a big village. I know how fortunate we are that we can make this happen.

I'm taking a little break from writing to focus on my family so you won't get my newsletter for the next couple of weeks. In the spirit of my new program, Sanctuary, I'm challenging myself to find a moment of sanctuary each day while Griffin's in the hospital and I'll be posting them on Instagram with the hashtag #orchidstorysanctuary. 

This time of year can feel overwhelming for many of us; I invite you to come join me on Instagram and share your own version of sanctuary with me. I'd love to see how you create safe, warm, and inviting spaces for yourself amidst this busy season. 

Finally, this year has held so much goodness and growth for Orchid Story. I want to say thank you to each of you for reading these words, sending me sweet notes, taking my workshops and classes and giving me all the good vibes. My hope is that by sharing my own stories of finding strength in my struggle you feel encouraged to do the same. 

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

Searching for Light

Turns out we need to actively search for light. In the thick of it. 

There was a time when I was pregnant with my son where a darkness washed over me. I wasn't myself, but I didn't know where my normal self had gone. It was like wearing sunglasses 24/7. I didn't see the everyday beauty around me. I didn't notice the brisk fall day with the leaves changing into bright colors.

It hit me worst when we were out. One evening we took our daughter, age 1 at the time, out for dinner. The hostess sat us next to a family of six. Four children; pre-teens and teens. The girls had shining, long blond hair flowing down their backs and the boys had clear skin and confidence. They looked like a page ripped from a magazine and I imagined they came from picture perfect home with soaring ceilings and a gleaming kitchen. The contempt I felt for that family just flowed out of me. It was so powerful that it felt like the air around me would turn into a black cloud. One glance at them and my eyes filled with tears, but I kept looking back, like a car accident you know you shouldn't be seeing. 

The universe seemed to be mocking me. I felt like a solo line dodge player with The World on the other side of the line, pummeling balls at me. I remember the details of that restaurant as vividly as I remember the details of the pediatric cardiologist telling us that our son may not survive to term.

When our world changes like this, nothing is the same as it was. But the world goes on spinning around us despite it being confusing and bewildering. Eventually, the tint on my sunglasses lightened up a bit, but never went back to the way things were before.

Sharing my stories helps me adapt them into my life. And to gain much needed space. I believe this to be true for all of us. Listen to my own audio recording and consider whether this is something that might help you adapt too. I would love the chance to hear your story.