Not Invited

For the last few weeks I've been trying to work more on my photography, which usually means looking at countless images, trying to take note of how they make me feel and what about them makes me want more. In the process I came across an a British photographer that has such a perfectly simple style...I poured through so many photos of hers and then I saw some of her youngest daughter. I thought, but wasn't sure, that she also had an extra chromosome. Of course I dug deeper and confirmed, and in the process found a collection of work she took of her daughter, Alice. Beautiful. Simple. Real. She titled one photo "Not Invited" and I can't stop thinking about it.

How many times in Ruby's life will she be 'not invited'? How many times has she already been 'not invited'?

How about when she was born?

I can't change it, but my initial reaction was definitely one of such disbelief because a baby with Down syndrome was not invited to be part of my story.

The emotions that come along with knowing my then feelings, and even (if I'm honest) my sometimes-when-I'm-scared-and-frustrated-and-overwhelmed-thank-god-it-passes-quickly now feelings are hard and confusing to say the least.

This concept of 'not invited' is hitting home very hard right now, mostly because of school. It's hard, y'all. I don't know the solution. I don't know if there is a perfect answer. But even assuming the best of intentions by everyone in every school situation that is to come, all of the extra work that goes into it makes me feel like Ruby is 'not invited'.

Back to her birth, Eli and Maddux immediately invited her into their hearts and lives. But as siblings often do, they squabble now. And I worry about her being 'not invited' during moments of their lives that might a little -too much- with her involved.

And probably mostly because of me and my fears of drawing negative attention to Ruby, but going out to do most things (like dinner out, a park visit, the grocery store, a doctor's office) often brings feelings of being 'not invited'. Because my girl is handsy. Because my girl is impulsive. Because my girl is curious. (All of those things could be because my girl is five.) It's sometimes feels like showing up to a china shop with an energetic dog - not invited.

On the nights when I lie for too many hours in bed, mind racing, often those thoughts are of Ruby and her future. Of course I worry think about middle and high school. Will she participate in school activities? Will she be accepted by some of her peers? Of course I worry think about college and her young adult life. Will she have independence? Will she have a job that gives her a feeling of purpose? When I allow myself to go to her mid-life, when Lehr and I are hopefully old and retired, I wonder more about her invitation status without us. That's a lot to think about when your child is barely in school...

This has nothing to do with the amazing friends around us. They go out of their way to make sure Ruby is invited. I think this feeling is more of 'not invited' in this world as a whole. The termination rate is sky-high for babies with Down syndrome, even in the United States. That's the ultimate sign of not being invited, isn't it? And yet here she is, possibly evoking feelings of 'I'd rather not' in those around her. So Ruby's very existence is one usually not sought after, let alone invited. (Are we in that dark place yet?)

Sorry guys, just a little melancholy about the invite list these days.