The Story of Us

Now that J. is a teenager who could, at least theoretically, read this blog and her medical website, I’m grappling with the reality that this journey we’ve been on for thirteen years is no longer my story.  Or, at least, it isn’t only mine. 

When she was a baby, I was the one who told the stories about the events that were shaping our world.  The story was shaped by the things that happened to her, but it was told in a narrative about how those things affected me.  In an effort to seek out other parents with similar experiences, I told our story a lot.  I shared it in hospital hallways in the small hours of the morning when I bumped into another bleary-eyed mom seeking the comfort of coffee.  I shared it in Parent Group, looking to both give and receive advice.  I shared it in emails with a parent across the globe when I thought our daughters shared a diagnosis (turns out they didn’t).  I shared it on the special websites created for families going through medical challenges.  And I shared it with friends, and family, and co-workers, and sometimes just in random Facebook posts.  I shared it because I needed to connect, to find support (both for her and for myself), and to keep people updated on her ever-changing medical situation.  Until recently, I believed that her story and my story were essentially pages from the same book.

But they aren’t.  Not really.  Her experiences of the world are, for better or worse, incredibly different from mine.  Even when I am right beside her, trying my very best to understand or help, I simply am not living the same moment that she is.  Hers is a world of sounds I don’t always hear, smells I don’t often notice, and people who are not always kind.  It’s a world where I can hold her hand but I can’t feel the needle going into it.  It’s a world where people talk to her and about her, but they very often don’t talk with her.   It’s also a world full of triumphs that happen outside our four walls – the excitement of doing well on an exam, the thrill of learning a new dance step – and that are celebrated with friends and teachers rather than with me.  It’s also a world in which very personal things must be shared with a select group of people in order to keep her healthy and to help her grow as a person.  But in a digital age (and, frankly, with a mom who talks as much as I do!), that “select group” of people can quickly become a large community of friends, family, and even strangers who know an awful lot about her that perhaps she’d prefer they not know.   

And so I am becoming increasingly cautious about what, when and how I share the pieces of her story.  Before I write something down or share information while on the phone with a friend, I have to think about whether or not she would want me to talk about it in that setting.  Maybe it’s okay for me to talk with my friends when we get together at someone’s house, but it isn’t okay for me to post a picture of her at the hospital on my Instagram page.  She’s made it clear that talking about her medical issues in public places is no longer comfortable, and she wants to find polite ways of saying, “I don’t want to share that right now.”  She’s learning the importance of personal space, both literally and figuratively, and it’s my job to help her set those boundaries.

I have my story to tell, and I believe it’s still important for me to do that.  But when that story is really about her experience, then I need to learn to step back and ask, “Is it okay for me to share that?”…and to respect her if she says no.