the difficult parts of life don’t come with instruction booklets. it’s just us, hammering out the days we’re given with flesh and blood.
it can be a messy business.
add to the mix the odd desire to share that process with people on the internet through a blog and it can get messier.
a reader responded to my last post with a much different spirit than the one i wrote the post in. i wrote it wanting to affirm mazzy’s personhood – the commenter said i was deceiving myself. i wrote it wanting to share how i’ve had to change as a person to accept that disability isn’t wrong or bad – vanessa said my response was cruel and damaging.
it’s odd, the internet. it’s nameless, faceless hands reaching for your shoulders and shaking you up sometimes. i know some things about vanessa. she, too, has a daughter with down syndrome. and i know her name.
i really like that name.
it’s so grand. it’s big. it goes on and on and seems like it could encompass great places, people and things.
and i think in some ways vanessa was right.
As a mother of a young adult DS daughter, your response to your daughter deeply concerns me. It’s cruel, damaging even…this is bad business in not being upfront and honest about why she can’t speak and sing like those around her. You aren’t deceiving her as much as you are deceiving yourself. She knows that something is different and you are attempting to gloss over her very valid worries about it…In your own way, since you know her best, have the hard conversation about why she won’t speak like those around her. ..Your daughter isn’t afraid of her own voice – and DS kids do not speak like typical people – why are you afraid to confront that?…It’s not easy and be prepared for many tears, but it is in the best interest of your daughter to reduce the illusion that all is the same. No one wins, especially your daughter.
no one wants to be seen as a bad parent.
all the parenting books in the world can’t answer the moments that take what’s in us, good and bad, and drops it right in the hearts and minds of the children we’ve been entrusted with.
i think with mazzy i was leaning towards osmosis. i figured she knows she has down syndrome and she knows that she goes to a different school than her brother and sister and she knows that she’s different, she just knows.
but reading vanessa’s comment, i asked myself, have i really had this kind of conversation with mazzy? have i sat down with her and talked explicitly about her differences caused by having down syndrome?
and honestly, i had to admit that i hadn’t.
so i did.
i asked mazzy about her voice. we talked about it. i asked her about having down syndrome and how her differences made her feel. she was thoughtful and had a lot to say on the subject, much i hadn’t heard before.
the conversation was necessary and surprising and teary and filled with prayers, love and hard questions with no answers. it was had and it was good and we’ll have more.
so vanessa – thank you. i hope that you saw what my heart also said in that post, that we as parents have wanted to create a loving, accepting home for a daughter to thrive in. and i think that it’s true that because we have such a home, such hearts, that this harder conversation was had with relative ease.
but you were right, too – and you were honest. and i like truth tellers, so again…