Since the inception of Orchid Story, I’ve had a dream to partner with charity organizations to give back. I’m so excited that the first of these partnerships is happening now for Heart Week 2019! I am offering an opportunity to work with me through the Mended Little Hearts of Washington DC Silent Auction. One of the great services offered by Mended Little Hearts is the delivery of Bravery Bags to families staying in the cardiac intensive care unit (CICU) at Children’s National in Washington, DC. I have been one of those families in the CICU and they remain some of the most unsettling nights of my life. To know that people care, people see you, people have hope for you is such a gift. Anyone can bid on the auction - I invite you to check it out!
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.
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.
I met today's co-author in mothering, Jessica Lindberg, during my pregnancy with Griffin. Back then her foundation had a different name, but today it's known as the Ethan Lindberg Foundation, named in memory of her son, Ethan, who died of congenital heart disease. Jess was a mentor when we entered the scary world of pediatric cardiology - a place no parent wants to find themselves. She led with love and showed me and many other heart moms what it looks like to walk this path.
I learned most from Jess during the last months of Ethan's life. She wrote often during that time and took her readers on the journey of what it is to walk to the end of the earth for your child. I often talk about taking a flashlight to the dark, unknown places in life and Jess did this beautifully. My heart broke open for her. It was the first time I had been close to the intense mother's struggle for a child's life and what comes after for the survivors. What a gift this was to allow me and others into her journey.
Jess is one of those people in my life who I feel I was destined to meet. We have other connections too, that have to do with her youngest son, Bodey. There are too many commonalities for our friendship to have been a fluke.
Though I've known Jess for many years it was not until 2018 when we finally met in person. This picture is from that weekend. I can't imagine going through life and not connecting with Jess - and I never would have met her if Griffin had a normal heart. Another example that life-giving connection can come from the darkest places.
I'm honoring Rev. Julia Jarvis on Day #5 of my co-authors in mothering.
I first met Rev Julia, as she is affectionately known by her community, when I was pregnant with my son. My daughter was just over one year old and I was trying to grapple with the diagnosis of congenital heart disease in my unborn baby. If this wasn't divine timing to be introduced to the most welcoming spiritual community, the Interfaith Families Project (IFFP), of which Rev Julia is the spiritual director, then I don't know what is.
We had been floundering around, looking for a spiritual home, for a couple years at that point. The churches and synagogues we visited didn't sit quite right and we weren't interested in the shame game that many of them played when viewing Interfaith couples like us. I first came across IFFP in a Washington Post article and it felt a little too good to be true.
It wasn't. I knew from the first five minutes of attending the first time that we had found the place we belonged. The years of wringing our hands and trying to pick one or the other religion simply melted away when we discovered IFFP. This may sound a little extreme, but if you spent time with Rev Julia you would get where I am coming from.
Every sermon she gave during my pregnancy with Griffin brought tears to my eyes. I was in a delicate place, yes, but I was also legitimately moved by her words. She was speaking directly to my most fragile place. She saw it and didn't turn away. I felt that in the presence of this wise woman, everything would somehow be ok. There were not many other instances during my pregnancy when I remember feeling that kind of clarity.
For years and years growing up, I attending the same mass at the same time every week. The priest never knew my name. Rev Julia learned our names that first time we visited and has embraced me and called me by name every week since. This image is a little snapshot of what this woman is made of. She collected over 100 of these aspen leaves on a trip to New Mexico, brought them home to Maryland and created these touching "We are all in this together" keepsakes for each IFFP family.
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
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.