Gratitude

This one’s for my sister.


Every inch of my body screamed, "I can't do this again. I need to leave. I can’t handle One. More. Moment.” I felt agitation running through my veins, anxiety rising in my chest. Resentment and anger came bubbling up as I thought of all the families sitting down to their Thanksgiving dinners while I found myself in a room alone with my mom, inside of the assisted living facility we had moved her into two weeks prior. She was downright refusing to get dressed and come with me to join the rest of our family for the meal. Or maybe it was her disease, the PCA, that was refusing to come.

I took a step back and tried to breathe to stop myself from yelling. I wanted to yell all the time, at anything and anyone. At the squirrels who got in my way on the sidewalk, at the aide who should’ve had my mom dressed already, at my kids to put their shoes on. In that moment I wanted to yell at my mom. Then my sister, Dani. “It isn’t fair that you get healthy grandparents”, I would scream. “You get to leave for the holiday and go on date nights with free babysitters and have someone cook for you while here I am, stuck in this room.”

The thing was, I really couldn’t convince my mom to come with me. While I was seeing red inside of my reptilian fight or flight brain, I knew enough to know that I was not mentally in a place where I was going to be able to connect with my mom, get on her level, empathize. Get her dressed so I could be with the rest of my family who were already together, waiting on us. So I called Dani.

Isn’t this what we do as siblings? I would do this to no one else on earth (well, except maybe my husband - sorry babe). I’m so resentful in this moment, I’m letting my emotions get the best of me by attacking my sister in my mind, I know she already feels horribly guilty about leaving me alone to deal with the situation, and I decide to call her?

And, you know what? She answered.

Thinking back on it now, I have tears in my eyes. Tears of deep gratitude for Dani. Put yourself in her shoes for a moment. After months of crisis, I mean crisis every damn day for weeks on end where you are pulled from meetings at work and bedtime with the kids to take care of our mom. Off to the neurologist, the psychiatrist, the ENT. Off to the emergency room. Off to a meeting you’ve been called to with the director of the facility. It is only us. Her and I. We moved her here away from her village and so it is us and only us who are responsible. Dani has finally gotten an opportunity to take a moment to breathe. A few days where she can be with her two little kids and focus on them with her full attention because she knows that even if she gets called she can’t physically come. It’s a huge weight lifted for a few precious days. And I evidently wanted to sabotage it for her.

Not only did she answer the phone, but she answered it free of hostility, even though she had to know it was an SOS call from me before she picked up. We had been answering each other’s calls with, “What happened?” for the past two months. But on Thanksgiving she sounded happy and peaceful when she said hello. Immediately upon hearing her voice I started to relax. I put her on speaker and she spoke to our mom in the way that I wasn’t able. She soothed and listened and comforted. After we hung up, I got mom dressed and off we went. 

For years people have told me, “It’s good that you have your sister.” For a long time, I wanted to respond by saying that having a sister doesn’t make the pain go away, you know. It’s still the hardest thing I’ve ever faced. “You’re reminding me of my sister because you want to create distance between yourself and this hardship I’m in; it’s easier to sugarcoat it with my sister rather than acknowledge the pain, isn’t it?” I wanted to say.

This year though, a deeper level of gratitude than I have ever felt before, came into my life. We have walked through the hardest days together, Dani and I. Facing the depth of this disease together, the stripping away of the woman we both love dearly has bound us together in the most beautiful way. We have chosen, time and again, not to scream at each other. Not to take our pain out on each other. But to support. To be the other person’s person. To love.

Now when people tell me how lucky I am to have my sister I close my eyes and say a prayer. Thank you for Dani. Please keep her safe. Please protect her energy and bring her peace.

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.