My talented friend Elizabeth Aquino, author of the blog “A Moon, Worn as if it Had Been a Shell”, invited her readers to take part in a video that she was making.
Elizabeth is the mother of Sophie, Henry and Oliver, the wife of Michael, and an elegant writer, an activist and pastry chef. Feeling intimidated yet? But there is no need – she is also one of the warmest, most supportive, empathetic, sharing and inclusive persons I’ve met in the blogisphere. Having a full life of her own, Elizabeth still takes the time and makes regular efforts to care – and participate in meaningful ways – in the lives of others. Hence her membership in the Hopeful Parents community, and her making of the video.
Hopeful Parents was founded by the mother of a son with special needs as an online community providing “grassroots support for parents of kids with special needs.” I was invited to become a regular columnist there after Katie passed away.
At first, I wondered if I should do it; my daughter had already died, and I wondered what I would have to contribute to this community of parents who were navigating the medical, emotional and social world with their children living with disability. Yet Christina, the founder, felt there was value in speaking to the issues of parenting a grieving sibling, as well as the difficulties surrounding pediatric cancer treatment and life after the death of a child.
I never thought of Katie as disabled. I expected her to regain her strength and to get her life back after she recovered from cancer. Yet Katie was disabled by her cancer treatment; she was weakened physically, needed to use a wheelchair, had a nasogastric tube and an IV line for many months, and was in severe emotional distress, at times. She never regained her appetite, had an enormous abdominal scar, had had major organs removed, and was on an oral chemotherapy follow-up protocol until shortly before her death.
Bearing all of that in mind, I trusted that I would find something to write about that would be of benefit to the community, and I was blessed by writing regularly (& reading) there.
Many parents of children with disabilities are practicing living abundantly, though their lives have taken a turn they didn’t anticipate through their children’s needs. Their lives are not easy, but their lives are rich, as you will be able to see from their words in the video.
The question Elizabeth asked is,
What would you tell yourself, if you could go back to the day of your child’s diagnosis?
I invite you to watch, and leave a comment about it for Elizabeth, or leave one on her blog (or mine). Here is the link: Elizabeth’s VIDEO .
Thank you, Elizabeth, for asking such a good (and deep) question, for listening to the responses, and for sharing them with the world.