Sisterhood

Three years after I was born, my sister Sarah was born. I adore my sister Sarah. She has gorgeous red hair, a generous heart and a warm smile. I treasure her confident support of Vivian and me.

I have longtime friends dear enough to count as sisters - my chosen family - whom I have traveled with and laughed til I cried with and shared pieces of cake with. Where would I be without their kindnesses in the form of casseroles and cookies and hugs as I stumbled along this path in the past year?

Within moments of finding out about Vivian's heart, and in the months following that led to her CHARGE diagnosis, I joined another sisterhood. For months, I wasn't aware that this bond existed.

It was only after Vivian's heart surgery that I felt pulled to connect with others who might be experiencing something similar. I joined the CHARGE listserv and started visiting the blogs of some CHARGE families. I wish I could describe the feeling of discovering a whole world of people who get it. I was so comforted to know I wasn't alone in uncharted waters.

Time and time and time again I am so, so grateful to live in a time where I can click click click on the computer and be reminded that someone else gets it. It's an interesting experience to feel a friendship with people whom I haven't yet laughed with or shared a piece of cake with. But it's real and true and I'm thankful for it every day. My friend Abi in England describes it as "our own Narnia." Part of our lives and part of our hearts is comprised of our own language, and we need each other to understand and to be understood.

Several of my sisters' hearts are full of worry and sadness right now. This morning I took their words and jogged with them, tumbling them around in my mind, trying to sort it all out. If I lived closer, I'd be dropping off cupcakes on their doorsteps, offering to play with their little ones as they catch up on a little sleep, doing an errand for them. But we're scattered across the world and all I have is words.

This is what I've been thinking about: our specific experiences as mothers are different, but our stories and journeys connect us in a really special way. I don't presume to know what anyone is going through, but the nature of our unique experiences make it possible for us to understand in a way others may not be able to. I am blessed to have joined this sisterhood of women who are on a different path than they anticipated, but approach life with love and a positive attitude and advocacy on behalf of their children. These sisters inspire me every day. At the same time, when days are long and the road seems extra bumpy and the tears come easily, I hold my sisters close in thought, understanding what that's like because I've been there and will probably always have my own days like that. When I am overwhelmed, at my wit's end, sad and trying to sort it all out, my sisters buoy me up with understanding, perspective, suggestions and ideas based on experience and that reminder that means everything: you're not alone in this.

I am thankful for you, dear sisters. I can't wait to laugh til we cry as we eat some cake together.

"Secret Heart" by Brian Andreas

The secret is
not in your
hand
or your
eye
or your
voice,
my aunt once
told me. The
secret is in
your heart.

Of course, she said, knowing
that doesn't make it any easier.