My cousin Ann passed away on Saturday after a long, courageous battle against scleroderma. She had an especially aggressive form of the disease, and for three years, fought with everything she had. With the help of her sisters and life partner Andrea, she worked tirelessly to beat this disease. And did so with a smile on her face, never letting the disease get her down. Despite the pain she was in, she didn’t miss a beat. She came to my shower, our wedding, Brienna’s funeral. She refused to let this disease get the best of her.
My parents, sister and I were with Ann on Saturday. Per usual, she had a smile on her face and made us laugh as we reminisced about the good ol’ days – Ann and her sisters (Lynne and Katie) were so good to us growing up. They were a little older than us, and we followed them around like puppies. At every family get together, they’d play hide ‘n’ seek and anything else we wanted and we loved every minute of it. Some of my fondest childhood memories are of being at their parents house dancing, singing and just playing for hours on end.
Before we left on Saturday, Ann said something that amazed me and has stuck with me. She said “I’m so blessed”. Despite her long battle against a nasty disease, despite her being called far too soon, despite the pain she must have been in, she still felt blessed. That was Ann.
Ann died surrounded by the people that loved her most. As Lynne said, the gates to Heaven are wide open for Ann. And I know one little girl that will be there to greet her. I told Brienna that Ann would be coming, and Ann has strict instructions to give Brienna a hug. It comforts me to know that they are together …
My heart aches for Andrea, Katie and Lynne. They lost their partner, sister and best friend. But Ann left her mark on all of us. Her courage, dignity and grace remain an inspiration. She will be so missed.
The community of parents who have lost children is frighteningly large … as we’ve struggled through this journey, people (often strangers) have showed us kindnesses I could never have imagined. Carly lives in Australia and as a tribute to her son Christian, writes the names of children who’ve died in the sand. She receives thousands of requests and therefore has to limit the number of names she writes each month. Last month, I was fortunate enough to catch the sign up. I think the result is pretty amazing:
You can read Brienna’s post here. I thought it fitting to share today, because today marks forty weeks and five days since Brienna was born. The exact length of time that she was here with us. The day has been weighing heavily on us. Going forward, the time without Brienna will be greater than the time we had with her. That makes me so sad. The yearning for her to be with us hasn’t lessened; I doubt it ever will.
But seeing her name in the sand with the sun setting above it fills me with a sense of peace. It reminds me of Brienna’s innocence and her simple beauty. Of all the things she’s taught us and continues to teach us. And so despite our sadness, we smile.
An angel for the book of life wrote down our baby’s birth, and whispered as she closed the book, “Too beautiful for Earth.” –Anonymous
Nine months. Such a defining amount of time as it relates to a baby … it’s baffling to think that nine months have passed. We find ourselves wondering about what could have been … what Brienna would look like, how she’d be changing. Some days, it’s a struggle to remain positive. We miss her so much. But we’re also trying to live life in a way that would make her proud.
On Sunday, Pat and I ran a road race in memory of Brienna. Pat ran his first 10K and I ran my first marathon – Pat is my hero and actually ran the last three miles of the marathon with me too! Our families were there to cheer us on (and Bailey-sit) and we’re so grateful to them for battling the cold and being there to support us! It was an emotional day. There is so little we can do for Brienna, so running in her memory is incredibly powerful. I am so proud of us and thankful to Brienna for being our inspiration.