September 23, 2010

Charmed Life


Space Boy, Fly Girl
Originally uploaded by Citizen Rob
I was having a discussion with a good friend of mine last night, and the topic had turned to health, specifically her own, which had hit a few bumps recently. She wasn't complaining, but nevertheless she interrupted herself to say, "But I know you've got a lot more on your plate to worry about."

This might sound strange, considering the sort of downer tone my writing has taken over the past few months, but I was a little surprised to hear her say that. I guess I've had a lot of issues concerning finances and my own health that have piled up on top of everything else, but as I said in a recent post, none of those other concerns are ever going to eclipse my worries over Schuyler. Like that anecdotal unconcerned frog in the slowly heating water, however, I think I've become accustomed to my fears.

I write about them here, because I'm a writer and this is where I go to sort these things out. But in my day to day life, I don't think I walk around wringing my hands and muttering to myself, my brows constantly furrowed. That's not me at all. I might live in the shadow of my concerns, but I don't know, perhaps most of the time I just think of it as shade.

The fact is, yeah, I worry. Schuyler's future is daunting, and as more and more of that future turns into the present, the more oppressive that present becomes. Schuyler's own personal development issues are frankly terrifying; she remains an incredibly naive little girl, and middle school does not typically present a very nurturing environment for innocents. I feel like we might be serving her up like a buffet for bullies, and I'm not sure I still have confidence in the school to take care of her.

There are all the other possible future issues to give me fits, too. Bad boys, mean girls, apathetic teachers, poor fathering decisions, bad tween television, a $7000 speech device disappearing, evangelizing Christians, the Plano PTA, Amber Alerts, No Child Left Behind, Lady Gaga worship, pieced ears, boobs, and her first period. And I never allow myself to completely relax about seizures. Some of her monsters are Everygirl monsters, but the ones that are just hers make the rest of them bigger as well.

But here's the thing that's important for everyone to remember, myself most of all. Schuyler's future is murky and unseeable because she is, in a very real sense of the word, entirely unique. She really is that purple snowflake. And while that means that every step feel like it could be the wrong one, it also means that I get to live a life unlike anyone else's.

Schuyler is a little girl with a monster in her head, yes. She uses a computer to communicate, she's going to be in special education classes for the foreseeable future and her prospects for living a completely independent life are questionable at best. She's got some hard years ahead of her, and there's just no way to dodge that.

But Schuyler is also a vibrant, energetic little girl. She's curious and positive and genuinely funny. She's more beautiful than any girl who shares my DNA has any right to be, and she's got a sense of style all her own. She will draw a picture of you in an instant, and you'll always get a crown. Schuyler loves easily and hugely. She takes bites out of the world without hesitation or inhibition, and certainly without regard to how rough that world might be. She might live part of her time in an internal world that she cannot or will not describe in detail to the rest of us, but if you allow yourself to be open to her and the way she expresses herself, she might just let you see snippets of it for yourself.

And I am the guy who gets to be her father.

I am the one who gets to guide her, but I'm also the one who gets to grow with her, and in ways that the rest of you can only glimpse from afar. Schuyler makes neurotypical sound boring. She makes the idea of parenting a typical child with a typical narrative sound a little empty and a little grey. People meet Schuyler and see the astonishing human she's turning into, and they envy me for having her in my life and in my home every day. And they know that as sad as it might sound that Schuyler might spend the better part of her life living with her parents, that scenario might not be all that terrible for me.

And if the fear and the worry and the fight and the sacrifices are the fee I pay to secure the privilege of being Schuyler's father and walking down that path with her for as long as she'll have me and for as long as I'm able, then I would say that I have been blessed with a charmed life.

The anxiety and the fear and the sacrifice, those are the pieces I write about, and I'm sure she's aware of them already on some level. I'm not interested in pretending otherwise; it's the reason I wrote my book, for her to understand one day. But the rest of it, the stuff that makes me richer than anyone I know, the moments of my life that I don't share as often here because they're hard to describe but also because I kind of like keeping them to myself -- that's the stuff by which I believe Schuyler defines her life and her father. And I think that even when things are hard for her, she understands that she's living a bit of a charmed life herself.

19 comments:

Nicole P said...

A beautiful post, Rob. Not much more to say.

Ariel said...

What Nicole said.

Sherry said...

Really, just lovely. Thanks so much for sharing.

Anonymous said...

Oh YIKES, here is an Evangelical Christian that cares about you, Julie, and your Precious Purple Snowflake. I hesitate to write this because I don't want to give you fits of anxiety.

One thing on that list I don't think you have to worry about is bad fathering decisions. I'm sure sometimes you feel like you're flying by the seat of your pants. You have been entrusted with this special and unique Snowflake and from where I'm sitting you're looking more than adequate.

Anonymous said...

Holy cow that was gorgeous. So umm, get your blood sugars in order. Don't be one of those caretakers who doesn't care for himself. Obviously, you need to stick around for as long as possible. -- Stellasmom

Anonymous said...

Where do I get my becrowned portrait? Want one. And you slipped in a a $7000 communication device went missing. WTF?

Rob Rummel-Hudson said...

No, I meant that the possibility of her device being lost or stolen is a persistent fear. Believe me, if that happened, you would have heard about it.

Pat in Austin said...

Can you lo-jack Schuyler's box of words?

wen said...

Great post. She may end up living with you, yes, but that doesn't preclude her having a full, interesting, and happy life, which is what it sounds like you want for her (and you).

CarrieT said...

Beautifully written and a good reminder to me and my hubby as we raise our SN daughter. What a privilege to be her parents even with the extra challenges!!

Carrie

Anonymous said...

I just finished reading your book on the high recommendation from my sister and brother. It was phenomenal and a little personal. Being that Im raising my 19 month old with Spina Bifida and hearing loss, I see many similarities through out your book. My daughter sounds a bit like Schuyler as in wherever we go, she makes friends. She has this gorgeous smile and is constantly waving or playing peek a boo with strangers. I think they are always surprised to see my toddler with a great personality and funky hearing aids behind her ears :) She aint babbling either so i really can get you re your daughter. Such is life as we know it... thanks for the book and your posts...

Penny said...

Beautiful Rob. A charmed life indeed. I wonder if people who do not have a non-typical child living with them also know that there is a beauty which surrounds it. Sometimes we don't talk about that - the gift it all is to have a child that is so specially 'yours.' I know others look at my life - a daughter who is a teen with autism, a neuro-typical pre-teen and a youngster with Type 1 diabetes and they think 'There but for the grace of God go I.' - but maybe that's also what I am thinking about their lives too ;0)

thisbe said...

I think Schuyler is an amazing, inspiring little girl. I know that raising her is a challenge, but it's mostly a blessing, too, right? I'm glad you share your story with us and I hope you continue to do so for the foreseeable future.

No matter whether Schuyler lives independently or not, I think she's a person who's going to make an impact on the world. I know, I know, this is nothing that hasn't been said before, but I still wanted to say it.

Anonymous said...

Hi - You say you are living a life unlike anyone else's, but based on the what I've read of your book so far and your most recent blog, it appears that our lives have much in common. My 6 yr old, Jacob, has bilateral diffuse PMG. He also is non verbal and is learning to use a communication device. He has many mobility issues, but understands and is a very social little boy. He was diagnosed at 9 months by Dr Dobbins after a long period of unknowns and advice not to research the possibilities. He too, has brought incredible joy into our lives, but with that also fears that are quite hard to describe.
Jodi

Tim Gort the Writer said...

Great post. I love your candidness and share all of the same 'fears' and have only recently come to think about the long-term future with our 8-year old with CP and our sixth-month old with CP. I, too, keep some of those shining personal moments to myself because I think it's part of the fuel that feeds my writing. :)

Anonymous said...

Evangelizing Christians??????
NOOOOOOOOO! The horror! People who preach love and acceptance and kindness and do their best to live up to what they preach??
How icky! I mean, if you want to go to church, I guess that's okay, as long as you don't try to tell other people about it and invite them to come along.
Good thing you're smart enough to see through their evil agenda.

Rob Rummel-Hudson said...

I honestly can't believe it took that long for an indignant, sarcastic (and so so so predictably anonymous) evangelical to step up on behalf of their Imaginary Friend.

Also, this:

People who preach love and acceptance and kindness and do their best to live up to what they preach??

Doesn't even come close to describing my experiences with evangelical Christians. Particularly that last part.

Now go forward in Christ, anonymously...

Just Me @ My Domestic Experiments said...

It's nice to hear from a father now and then. My husband doesn't speak of his anxieties or his joys much. Thank you for the small glimpse into fatherhood. Perhaps I will get his one of your books since he doesn't read blogs.

Anonymous said...

This is about the most beautiful piece about parenting I have ever read. Thank you.
Maggie g.