I published the words I did on Wednesday to begin a conversation about ableist and “I’m sorry” subcultures, discourse and dominant beliefs that subtly exclude certain families and children. I should point out that while I only recently did that disability narrative assignment with my students, those some 750 words were nearly two years in the making, so forgive me if these ones are a bit rough.
During those two years I’ve certainly felt misunderstood and excluded at times, but the courage to speak about these feelings and these concerns rests upon a church community who has consistently offered love and acceptance rather than questions; family like those little girls in the photo and many others who love Lucia with abandon and without exclusion; and countless friends (and foster mothers!) who have modeled love and grace with their own lives and walked with us step by step.
My words are personal, because they are my story. But if these past few days have taught me anything, it is that words are never narrowly what they seem, because they take on a life beyond themselves. I’m still not sorry, but I’m also deeply grateful for all those who have said and are saying, “Thank you for sharing.” Your thank yous inspire me, because like the intention and provocation of my not being sorry, I believe they do some really holy work to break down the distance between us. When you say, “thank you for sharing,” I feel wonderfully and righteously and graciously heard by you.
And that has not always been the case.
Whenever I am asked if my baby was born healthy, whenever I am peppered with questions about how there couldn’t have been any complications during pregnancy or at birth when Lucia lives as she does these days, whenever I answer question after question regarding a disease that holds very little answers or insight into the future (and by the way, none of us knows our future, but that’s for another post), I wince a bit. I feel as though the world wants an explanation for what’s “wrong” with baby Lucia, or how things could have gone so “wrong,” but we’re at an impasse, because I refuse to offer one. I will probably never be able to stop having to answer these pedestrian, medical, intrusive questions either, but the thank yous I’ve heard this week are reverberating with joy in my soul.
When you reply and have replied, “thank you for sharing,” I hear you wanting to understand. I hear you recognizing the value of this story, the value of all our stories, the value of many different lives, and most specifically, that of baby Lucia. I hear you wanting to include us as we so want to be included alongside other families. I hear you not being sorry for my child or any other, but recognizing that we can grow as a society and a people to make space for all lives, for all families, and for all children.
So from the bottom of my heart, from my little girl, from my soul, may I offer you in return, a holy thank you.
(…and then I really promise to stop writing posts with such cryptic, prosaic titles!)