This is the year I’m going to write my book. I’ve talked about it for ages – both inside my own head, and hesitantly to a few trusted people (people I’ve trusted not to laugh at me). Why am I hesitant? Sigh. Well, I guess it boils down to self-esteem. I know I can write, and I know I have a story worth sharing. But can I actually put together a publish-worthy book? That’s the big question. And sometimes – oftentimes! – it’s easier to avoid trying so as to avoid failing. And yet, in not trying, potential success is also lost.
A friend of mine (who seems to believe in my writing abilities) turned me on to Kristen Lamb, a sort of writing guru who, through her blog, mentors wannabe writers. I’ve been reading some of her stuff of late, and this post really kind of lit a fire under my butt: Aspiring is For Pansies – Tough Love & Being a Writer. What it boils down to is this: nobody is going to take you seriously as a writer if you don’t take yourself seriously as a writer (and even then, people still might not take you seriously, but get over it). When I’ve referred to my writing aspirations, I’ve always referred to them as that – aspirations. I’ve never felt confident calling myself A Writer, for lots of reasons – among them: I never even went to college, so who the Hell do I think I am?; I’ve never been paid for any of my writing (although I have had different essays and such accepted for publishing on different websites); writing isn’t something I commit to do on a full- or even part-time basis – it’s more a hobby; and the list goes on. And yet, writing is as much a part of me as, well, reading. Or ice cream. Or cleaning house. It’s something I need to do. And it mostly takes the form of blog writing, but that counts, doesn’t it?
Anyway, getting back to my original point: after reading that post on Kristen’s blog, I resolved to make 2012 the year I finally get my book down in manuscript form. The book I’m talking about is Finnian’s Journey (I don’t know that that will be the final title, but my blog by the same name is the basis for it). And really, practically speaking, it should be a fairly straightforward project. I don’t plan in starting from scratch; all along what I’ve envisioned is converting my actual blog into book form. I’m not even saying my story is especially unique – after all, lots of people have children with Down syndrome, and lots of people have written books about it. What I think (hope) is unique about what I have in mind is that our story is told as it happened, day by day, week by week, month by month, in a journal format. I think this gives it a different – and possibly more authentic? – spin than a memoir told after the fact, when events and emotions are being recalled rather than recorded as they happened.
So I’ve been trying to carve out a little time here and there for the last few weeks to work on this, which requires that I go through my blog line by line from the very beginning, and decide what to keep, what to throw out, and what to expand upon. It’s proving to be quite an emotional process, reliving it all. And I’m discovering some things.
I really struggled with my son having Down syndrome. I mean, I know, in a sort of abstract-remembering way that I struggled with it for some unrealizable period of time, but reading what amounted to my diary through those early weeks and months, it pains me to realize how hard a time I really had coming to terms with it. How desperately I wanted nothing so much as for Finn to not have Down syndrome. How I chased a diagnosis of mosaic Down syndrome, because I thought that somehow wouldn’t be as bad. How I hoped and hoped and hoped that, although I was being told he had Down syndrome, he wouldn’t actually manifest Down syndrome.
When did I make peace with it? I haven’t gotten to that part yet, and I don’t have any concrete memories of waking up one day and saying, “Okay, I’m fine with this. My son has Down syndrome, and it’s okay.” Clearly it was a process that lasted a while. And I think what happened was that gradually over time, so gradually as to be imperceptible, I grew from grief to peace. Somehow, I did make the leap – perhaps by minute degrees – from being not okay with it to being okay with it – really, really okay with it. And when I say today that I would not change anything about Finn, including his wonky chromosomal makeup, I speak the utter truth. Do I wish I could shelter him from the pain and frustration he will undoubtedly encounter over his life as he faces prejudice and ignorance? Yes; I think it’s a parent’s lot to wish to be able to shelter all of their kids from cruelty – differently-abled or not. Do I wish he didn’t have a life a struggles ahead of him? No. Struggles are part of anyone’s life, and I know that we – Michael and I and his brothers and sisters – will be here to help him through whatever struggles he may face.
Another thing I’m realizing with painful clarity is that being an advocate was not automatic for me. My earliest accounts of Finn’s life, for instance, are peppered with “Down syndrome babies” and “Ds kids” – I knew nothing about People-First Language. There is an itch to clean this up as I go along, to change the terminology I used then to the appropriate terminology I use today. But that wouldn’t be honest, would it? And the whole point is to keep this real, to show the road I traveled, with all its warts and foibles.
It’s also helping me to see that ignorance is first nature – we only know what we know. Which means it bears keeping a little forgiveness in our hearts for those who haven’t traveled a similar path, who just don’t know.