Dear Heart Community,

We are long time, dear friends. You took me in and made me one of your own when I was 29, pregnant with my first child, and scared out of my mind. I thought I’d have healthy children, I never considered I wouldn’t. The moment I learned my son would have HLHS, you came along side of me and let me know I was not alone. When my dreams of bringing my son home from the hospital days after his birth and thinking his biggest “owies” would be his vaccines were dashed, you were there. You shared your stories, your children inspired me and gave me hope for my son Ethan.

When I grasped that my experience of motherhood would not be typical, you reminded me yours was not either. You made me part of something bigger than just my story. I grew up with you. I became a mother amongst you. I learned from you. I leaned on you.

This is a hard time of year for those of us who live with the death of our children. We often fumble for ways to be present in this Holiday Season. We know a seat will be empty at Christmas dinner and that there is a spot under the tree where some other presents would be. At the same time wedesire to feel joy and to engage in the magic of the season with our other children and with our family. The dance between joy and pain, fullness and emptiness..it continues. And is magnified this time of year. 

Today I'm sharing 8 things you can do THIS WEEK to honor your child and to take care of yourself. 

Your arrival into my life, into our family was and is the most transformational gift. You gave us many gifts, but the greatest one is you taught us to love deeper and wider and bigger than we ever would have. Because of you Ethan, our lives are expansive. We’ve met the most incredible people, the most dedicated nurses and doctors, the most beautiful children. The intricacies of our experiences I could have never imagined. You taught me to swing open my chest and just love. You taught me to accept what comes. To take it in and to own it. You showed me it’s worthy to expend myself, to sacrifice, to give my all to someone. You knocked on the door of my heart and I let you in. I jumped in and gave you my whole heart. You and I are soul mates. From the very beginning we had a connection, a bond that felt centuries old. You showed me a love deeper than the deepest oceans, a love that survives death, a love that extends to eternity. A love that never, never, never ends.

But instead of crying in my car after loading up my Target purchases, I sat there and took a deep breath. I smiled at my kids then headed for Starbucks to treat myself for begin a brave mama. Sometimes just the little, normal things require us to be brave. I’m so thankful that my Ethan taught me how to be brave. This time around I’m challenging myself to see more gifts, and less limitations. I’m leaning into my role as a teacher. Instead of feeling defeated, I’m reminding myself of all the incredible ways Ethan touched our family and our community. Bodey will be no different. He will shine. He will teach and I will help him be the best Bodey he can be, just like I helped Ethan. I’m reminding myself to hold my head high, and to be proud of the life I have, instead of the life I planned for. Not easy, but worth the challenge. I’ve come to know that I’m here to learn, grow and teach. Some days I’m brave, some days I am not. And both are okay.

Ethan’s life and death have taught me to really listen to myself, my intuition, God, my soul. To really listen. As these thoughts of fear and failure raced through my mind, one of my greatest realizations of the last three years screamed to me. “IT’S NOT ABOUT ME.” My life is really not about me. My life is about loving others, making a difference, and impacting change. My life is not a container with 4 sides, but rather it’s a fluid river that’s ebbing and flowing and desiring forward motion. My spirit years for connection to you, to others. It yearns for meaning, purpose. It yearns for love.

You are the mom before someone. The dad before someone. The friend, the student, the scientist, the doctor, the teacher, the business person, the author, the someone before someone. Someone will come after you. They will stand on your shoulders. You can make a difference for them. You can stand tall and help make their story better. Even if you cannot make yours better. You get a choice. You always get a choice. I have come to a place in my life where I believe there are no coincidences. Ethan in the hospital for 13 months..no coincidence. Our story...no coincidence. Your story...no coincidence. You hate the outcome of your story? I get it. I do. But you get the choice. Make a change, make a difference. It doesn't have to be in a loud, sweeping way. It can be quiet and small...it's still making a difference. Love the people who tried their best, even if they came up short. Love them into doing something different next time. In the process of all of this...love yourself. You are a beautiful creation. You are created to make a difference. 

Choosing love is not easy. I would not have been able to choose it fully had Ethan not been my son. I loved him so much that it became my only choice, my only option. In choosing Ethan I have been broken and transformed. When I connect with another mom whose child is sick or a mom whose child has died, when I see a friend in a tough spot, I whisper “thank you Ethan”. It’s because of him that I can see these people and love them and feel so deeply with them. 

Spring has turned to summer and I find my body physically aches. I’m often not consciously thinking about being sad or about the fact that another school year has finished without Ethan and that another summer is upon us and we will make memories without him. I’m reminded that grief is physical and at times all encompassing and that it demands my time and my attention. I’m reminded that more time is passing and that healing is a process. That I'm still a student and that I have more work to do. 

For quite sometime I've wanted to continue writing. I had a hard time giving up writing on Caringbridge, but sensed it was time for something new. So here I am writing again, but in a new home. To be totally honest, I'm not sure what this blog will become. But I know I have a lot to say...a lot to share...so here is where that will happen. Over the past three years I have not shared in writing physically as much as I've written in my head. The last three years of learning to live with the death of Ethan have been...well I'm not sure what word I'd pick. They've been hard and they've been fascinating.