dear vanessa

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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.

or better.

or both.

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.

vanessa.

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.

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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.

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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…

thank you.

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6 Responses to dear vanessa

  1. Jesse says:

    again, again, again, my love for your family grows. we miss you. what are we doing?

  2. Natasha says:

    I saw her response to your post and it stuck with me for the last few days. I wondered how a parent could walk in the tension of acknowledging their child’s very real differences while still offering the gracious, unwavering support and encouragement that you described in your post. Thank you for sharing how this looks for you and Mazzy- it means a lot to me that you’d be so open about your journeys.

  3. zena says:

    thank you natasha…i appreciate your words.

    and jesse – how i long to see all of your faces again!

  4. Vanessa says:

    Just saw this and glad I could help, though it was you who did all the work.

    When I read your post, something stood out and that was the difference between what your daughter said and the way you interpreted it. She asked what was wrong with her voice and your translation of “what is wrong with me?”

    I didn’t get that sense at all, I don’t know why, but it felt a projection your part. M daughter is 23 (to me this is young adult) and has DS and is what I would consider moderate-severe, not one of the types that is paraded around by the DS community. But she understands that there are differences and sometimes it takes a moment to step back and honor your child by really listening to them and being straightforward.

    Maybe your daughter can’t sing because of muscle tone or tongue length. As DS parents, it feels like every conversation should be a mini-therapy session (you’re a-ok! Just as you are). But sometimes it’s just plain information that our kids want.

    An outside voice is helpful. It happened when my daughter was a teen and she always wanted to wear turtle necks like those around her. But her neck is thick, it makes her look bad and she hates it once she gets it on. We finally tried to explain to her that she has a big neck because of DS. Nobody wanted to have that conversation and the advice I got from other DS moms was to act as though it were normal…but it wasn’t.

    I could go on able how it feels like the DS community sabotages emotions of our children by acting as if they are normal when they aren’t, but I don’t have a blog and I carry forward. But your story touched me and its good to have the conversation you did. There will be many more and I can’t say they get easier – wait til the can I have kids discussion! – but we help each other along.

    As far as the name Vanessa, I’ve never thought it grand. I actually most identify the name with vanessa Williams, who seems like a gritty scrapper to me. She was supposed to be miss USA and got tossed out, rerouted her life and became a singer. She seems glamorous but to me she seems like someone who knows how to roll up her sleeves, which is what I and my family did after my daughter was born. Cuz sometimes the snow comes down in June and you have to save the best for last by putting all the hard stuff first.

    Im not a warm fuzzy person, but It’s a great ride though and you seem ready for the thrill! 🙂

  5. Sarah says:

    It’s so great to see two people that potentially have huge differences reach such a beautiful conclusion. The internet is full of fights and disagreements and reasons I’m right and you’re wrong. Your grace is inspiring.

  6. zena says:

    thank you, sarah.

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