This is a blog about disability right? As readers, you might wonder why I've chosen to write so much about Ellie. How does it fit with my mission for this website?
Ellie, Hank and myself all have disabilities.
Chris is the only non-disabled member of our family.
Chris and I are navigating how to create a healthy interabled relationship.
Ellie had Hypoplastic Left Heart Syndrome--a congenital and invisible disability.
Hank is autistic.
Right now, I'm navigating how to grieve and be more of a caregiver while also being disabled.
Grief is a large part of disability. It's an ambiguous loss that both Ellie and I grieved together.
The loss of a disabled child is a tangible and unnatural loss, just as losing one's health is. One is not supposed to die so young. One is not supposed to lose their health so young (this can apply to Ellie and myself).
I had intended to introduce Chris to you all in due time and share our story of navigating an iterabled relationship, however, Ellie's death came before that happened. I'm going to take some time to write about our family's story. We are one that is deeply immersed in all aspects of the disabled experience. I have found that writing my story and my journey is the most helpful and effective way for me to share life with disability, to educate, to grow and to heal.
Blessings,
Emily