I never do anymore with this blog, given the long spaces between posts.
I want to write more here, but a few things deter me. One, there's facebook (I know, eye-roll, eye-roll, eye-roll, but it sure is a good way to keep in touch with people and I only have to use about . much brain power to use it), and two...well...two is a longer story. I don't know if I even have two quite figured out exactly. Two is convoluted. Two is that the world suddenly seems smaller and I feel less anonymous, so airing everything (not that I ever have nor will air EVERY everything) seems less, safe, I guess? Less sacred even, maybe?
Also, though I began keeping a blog (in various iterations, but using the same name) long before I ever had children and thus, Down syndrome entered my life, it's pretty safe to say this became not only a "mommy blog" (gosh, are we still using that term??), but also a special needs blog--specifically, really a DS blog. To that end, I have found it difficult to reconcile reality and the other types of truths I hope people will walk away with when they stumble upon me here.
What the hell do I mean by that? Well, I guess I mean that I have found it harder in the last few years to be totally honest about life with Down syndrome, and thus, life. Early on, I was one of those people who accepted DS pretty quickly and rather easily. Sure, it was a shock in some ways, and it wasn't exactly what I'd hoped for, but I rolled with it as best I could. Some might even say I embraced it. I can still remember my older sister saying to me "You shouldn't let Down syndrome define you," because I guess she thought I'd already drunk the kool-aid.
Truthfully, I don't think it ever has defined me. Not completely. But, much like I don't want motherhood to be THE thing that defines me--solely, anyway--it is a big part of me. How could it not be? There is no me without motherhood. There is no me without Down syndrome. Not anymore. For the rest of all time I will now and forever be known not only as a mother, but a mother of a child with Down syndrome.
Where am I going with this?
Okay, let me start over. I haven't written much here in a long while. In part, that is because should someone stumble upon this blog and my words, I want them to walk away with a...hmmm...well, I don't want them to walk away with a bad feeling about Down syndrome. Not that I have any intentions of waxing on and on about how terrible Down syndrome is--it's not, generally. But. The truth is, personally, I have found, in our experience, Down syndrome is not all hugs and high fives and gold medals at the Special Olympics.
It's always been a multi-faceted experience for us. I'm pretty sure that goes without saying for all people. It's not as if I thought we'd get a pass and Georgia would have DS, but only the good parts of it. (After all, we got some bad parts (i.e. health issues, etc)only hours after she entered this funky little world of ours.)
Me? Mostly, I am happy for the fact that it's not all DS rainbows around here all the time. Though she can infuriate me faster than a person crinkling a brown paper bag while talking to me (true story...I find this sort of thing maddening), I find my daughter's personality--I think she just might be the antithesis of the DS stereotype--endearing. She is infuriating, yes, but she's also pretty flippin' tough. I like that about her. In all the ways I am a pushover, my daughter is the opposite. She's sassy, and bold, and always honest in her way.
That said, beyond who my daughter, being someone with an extra 21st chromosome, is, Down syndrome, with all it brings to our table, can be a rather rude dinner guest. Sometimes, I want to kick DS right on out yelling, "Who the hell invited you, anyway?? Georgia can stay, but DS? You are disinvited from our party!"
Of course. It's never going to be that easy, is it?
You see, Georgia is great. Down syndrome. Well, that's a mixed blessing. I guess, while this isn't exactly a shock, I am still--and I suspect forever will be--coming to terms with what it means to have DS always there factoring into all our life's equations.
It's difficult for me to write about the bad bits though because I worry that someone might come here and read about some of the hard stuff and consequently...I don't know...geez, I still can't believe I even have to write this as the reason I tend to self-censor, but here goes. If you're reading this, I assume you know a little about the termination rates of prenatal babies with Down syndrome and it's surely no surprise to you what I am going to write, but I worry if I write something bad about DS, someone with a prenatal Dx might read it and decide based on MY words to abort their pregnancy...well, shit. Do I even need to complete that thought? Do you see why it's a tough decision to air the bad side of living with DS?
That said, I feel like it's also my responsibility to paint a realistic picture. Because, why the hell else would I even want to write? This is a blog based on our real life. It's not fiction. We are not the Down syndrome ambassadors! Also, perhaps my words--my honest words--can help someone. Someone else like me, for instance, who has been searching high and low for other families who have a young child with Down syndrome and an anxiety disorder.
It's not all bad. In fact, the majority of it ISN'T bad. In fact-fact, I think the anxiety disorder is the root of the majority of OUR...well, I won't write problems, but...the anxiety definitely makes things, less than easy. More than the DS does. By far. DS can complicate things, but anxiety, in our experience, can basically kill things.
It's hard to be diplomatic. Especially when one is trying to live their life in the, for lack of a better term, positive realm.
It is becoming clear to me as I ramble on here that I am, perhaps, overthinking the whole thing. (Who, me???)
So, here goes. This is my attempt--again--at writing in this blog. I have a lot to talk about. School, the afore-mentioned anxiety disorder and everything that goes with it, and some less "big" stuff, too. It's not all shit! (My tone probably doesn't read well here, but I mean this in good humor. You know, I just went on and on about how BADBADBAD our lives are, when really...we're doing pretty okay, and I am finding what I am writing here to be both infuriatingly talk-y and over-explain-y, and hilarious, because what am I saying??? I'm not writing because life is shit and you can't handle the truth?? That's not even true! Garsh, I am about five seconds from hitting delete on this post and I have lost track of how many I have already done that to....gahhhhhhhhHhhhhh.....shut up, me!)
OK. Full stop. Breathe, Tricia. Your neurosis is showing.
*breathe in. breathe out. breathe in. breathe out.*
I'm not going to think *too* much about what I want this to be. (Haaaaaaaaaaa!) Nor about what exactly I want to talk about. I DO know that I want to come here and be honest again. Some more.
Why not? Right?
I hope some of my old readers will find their way back.