This picture was taken a month after Gwendolyn died. Eleanora was so little… she was still constantly looking for her sister.
Five years later, and that hasn’t completely changed. She now understands death is permanent – though that concept is continually difficult for even me to fully accept with someone who was so much the center of our world. She still talks about Gwendolyn, remembering their life together, including details of things we don’t have photographs of nor have mentioned to her. And she misses her big sister, often saying the most beautifully mature expressions of grief, such as:
I’m sad because I miss Gwendolyn – but I’m grateful I knew her.
She shares stories with Willa and has proudly taken on the role of teacher “because she never got to meet Gwendolyn.” And she rarely draws or calculates our family without including her biggest sister too.
I don’t know if I’m doing this parenting through grief thing right. I’ve made many mistakes and know I’m a different mother than who I would have been… but I try my best. And I believe that validating all emotions and normalizing grief and loss as human experiences has informed their emotional intelligence. And that’s a good thing.
Because my infant was given a terminal diagnosis, I started listening to communication around death. And I realized so much of our discussions of death with children is guarded and so glossed with “healing.” Perhaps, surprisingly, I don’t imagine Gwendolyn walking in Heaven, or without her breathing machine. And I don’t paint that picture. Gwendolyn was happy with herself exactly as she was. So I talk about her life and her personality — and, sometimes, when they ask, we discuss the medical and societal barriers that made her life challenging.
I know much of religion is based around concepts of perfection being attained in Heaven. But, to me, Gwendolyn was perfect just as she was born. The way we talk about disability and death matters – it shapes culture, assumptions, ableism. And I want my children to see disability as simply part of life – not inherently sad.
Because their sister’s life was beautiful. 
