Thursday, December 10, 2015

The Mansion of My Mind

I came across a blog this week that spoke so eloquently what weighs so heavy on my heart some days. The author spoke about her daughter, her daughter's chromosomal syndrome, and how it feels sometimes to live in that world. The line that jumped at me is one I could have written:

"it's hard living in the zone of parenting other people hope to avoid."

Hard indeed. For one, it's hard because I hoped to avoid it. Yikes.

I love my daughter. Seriously LOVE Ruby to pieces. Not a day goes by that I don't grab her face and have to stop myself just short of eating her up. And I want her. I actively want her in our family. But who she is isn't who I thought I would 'want' when Lehr and I decided to try for a third child.

So I get it. I get the parents that hope to avoid this particular zone of parenting.

I was absolutely one of those people. I was very close to discontinuing our attempts to have a third child when I found out I was pregnant. And that was almost exclusively because my age made me think that the odds were too 'in my favor' for a baby with Down syndrome. And why I was afraid of having such a baby was because I had no experience. I had no personal connections. I had no real facts. I had no idea what Down syndrome was except for the random and very lacking information I had read in passing or been taught in a biology class once upon a time.

That is why I am so passionate about World Down Syndrome Day and the Buddy Walk and getting Ruby's shirts out there and plastering her face and her videos and her story all over Facebook. It is my hope that those around our family - and their children and their friends - gain some insight into how not scary Down syndrome is. Is my hope that they are not like I was before I had Ruby.

Recently Lehr told a stranger about Ruby and her first question was "How old was your wife when she had her?" When he answered "36", that was followed by a head nod and a "yup..that's the age" type response. Ouch. It's not even that I'm offended by her perhaps insensitive or ignorant reply, it's more that it pains me to remember that I would have thought the same thing: pity and a 'that figures' response.

Back to the blogger's statement about living in this zone. She followed that with "It's hard having a child other people actively don't want." How I feel about that is something I get stuck on from time to time. It's not hard to love Ruby, but because of the lack of inclusion in so many areas of our lives, it is sometimes hard to parent her. Not physically parenting her in my home, with my friends, surrounded by family. But it can be hard to parent her when we're at a park. Or at the hospital. Or in a store. Or anyplace that she decides to act like she's two years old. We all know what two looks like: random tantrums, messy eating, social awkwardness, lack of 'listening ears', flat out disobedience. But I know when Ruby acts two in these ways, the spotlight is on her more, and for many people - people like pre-Ruby me - her behavior is chalked up to her extra chromosome: 'that figures'.

And it can be exhausting.

Exhausting to try and get her to blend. Exhausting to try and disprove any stereotypes I anticipate her audience is believing. Exhausting to feel I have to defend her 'special need' to everyone we encounter. Exhausting to feel like I'm always on guard, ready to stop her from overstepping her boundaries. Exhausting to parent her under scrutiny filled with pity.

Good thing she's cute.

In all seriousness, this isn't something that gets me down every's just where my brain goes when it has a moment to wander every once in a while. Mostly it's one of those things that I don't even realize I've been thinking about until someone else voices it and then I feel a weight lift as I realize what I've unintentionally been carrying. So today I'm dropping the weight...hoping to not pick it up without noticing again.

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