Four Seasons (and Reasons) of Boston

 
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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. 

Marathon Monday

On April 16th my husband, Curt, ran the Boston Marathon. Throughout the entire training process, every time I talked about the marathon I said "we," as in both Curt and me, as if I was running the marathon too. It just came out. I am not a runner and in fact I can't quite stand running. I think it's because when our partners decide to commit to something big, we feel a stake in it too. We want it badly for the person we love and we often have a significant shift in our daily schedules too.

Because he was running for a charity, Team Frannie of the Ethan Lindberg Foundation, this added to my feelings of connectedness to the race. I wanted to give back to this organization that had been alongside us since my son Griffin was diagnosed in utero with congenital heart disease (CHD) seven years ago. 

Also, the lives of several children who had died of CHD were integrally woven into this race: Ari, Chase, Ethan, Frannie. Their moms, dads, and siblings would all be present on race day. 

On race day, Curt got up early and headed out. The weather was as bad as predicted. The kids and I sat in the hotel restaurant watching the elite runners and wheelchair athletes at the starting line.  The rain was already gushing in torrents over the hotel entrance, soaking passersby. I was anxious about Curt having to stand in the wet and cold for hours before he started. I was anxious about all of the runners having trained so intensely to show up for this weather. Then they did a tribute on tv to the five year anniversary of the Boston Marathon bombing and my kids starting asking what had happened. Yes, I was anxious about that too.

We headed up to the hotel pool and I watched Carly and Griffin play. My heart was hurting, confused and joyful. Hurting for the pain that CHD has caused these families and my own. Confused about how some kids make it and other kids don't. Joyful that we had the once in a lifetime opportunity to be in Boston that day and participate, in our own way, in the race. 

A little while later, we arrived downtown. We stepped out of the uber and within ten second we were drenched. The kids starting complaining immediately but we went up to Beacon St. to watch the elite women pass. At mile 25, they were almost done. 

We stayed inside for a while, keeping warm. But, I had only one chance to see Curt and I didn't want to miss him. So, the Team Frannie crew headed out to Beacon St. Again, fully drenched within seconds. The rain was coming in sheets, sideways. By now the runners were slowing down. Many were walking. Several were already wrapped in the silver thermal blankets they normally receive at the end. Some were in between two runners who had their arms wrapped around the middle runner, almost carrying the person along. A double amputee made his way by on his prosthetics. I could see the pain in his clenched face.

About 15 minutes before we expected Curt, I took my hand out of my glove and held my phone, with the camera open. I wanted to capture the moment on video. This meant that my hand and arm were sopping wet and frozen and that I couldn't follow Curt on the tracker app because I wanted to keep the camera ready. 

The 15 minutes came and went. By this time Griffin was crying hysterically. He was freezing and wanted to go inside. Carly was ready to give up on seeing Daddy too. I couldn't hug them because we were too wet and I was holding an umbrella and the Team Frannie sign we made and the phone. I tried picking Griffin up and putting the umbrella down but that made things worse. 

I needed to make a decision and quick. Should I let them go inside and get warm? My mother's instinct said yes, especially for Griffin whose health could really be affected by this weather. But my human instinct said no. Their dad had undergone a grueling training for this day. The families standing next to me had undergone weeks and months of hospitals stays for their sick children. And, even if they didn't feel it right then, my kids would always want to have the memory of seeing their dad at mile 25 of the Boston Marathon. So we stayed out.

I started wondering if we missed him. What is he wearing? the Team Frannie supporters wanted to know. I didn't know or couldn't remember, the anxiety getting the best of me by this point. Is Griffin ok? they asked. I wasn't sure.

Finally, we spotted him through the driving rain. He looked fantastic - a big smile on his face and a great energy in his stride. I instantly felt ten pounds lighter. The kids switched from crying to cheering. I pushed the red video button on my outstretched hand. 

He gave us a each a kiss and then he was gone. I looked at my phone and realized it hadn't recorded the moment. I tried again as he ran off towards Boylston St, the final stretch the runners dream of. 


All the struggle and pain and beauty and transformation of life was happening right in front of us that day. Feeling so many emotions at the same time IS life. I was filled with pride and love as I watched Curt run past. Then I turned to take the kids in and caught the eye of my friend Jessica, mom of Ethan, and became filled with sadness for the loss of his life. 

Life is not black and white. It's not either or. It's messy and gray, confused and beautiful. I'm lucky to be here, right in the middle of it.