Saturday, May 19, 2012

Surviving at sea (send a boat please)

Not drowning, but not swimming with ease either. That's where our family is right now. We're out on open waters, the ship finally sank a while back, and we're treading water, taking turns holding each other up, all the while the waves are getting bigger and bigger. And wait, was that an ominous fin I just saw surface over there?

And Down syndrome isn't even on the horizon. We're uncomfortably afloat on the severe Central Sleep Apnea sea.

When your child is given the diagnosis of Down syndrome you wonder (and oftentimes despair over because of the antiquated, wrong and stereotypical information the world and especially the medical professionals in it are so eager to fill you up with) how your child's life will be. Whether she'll need open heart surgery, if she'll ever get married, whether she'll be able to, whether she'll be allowed to, attend mainstream school, if she'll be able to live on her own as an adult, whether she'll have a chance at growing old, if she'll be bullied or excluded, whether she'll learn to be witty and sarcastic or just plain funny, if she'll get leukemia, whether she'll ever get to drive a car, if she'll learn to speak her mind or just to speak, and whether she'll be happy and if she'll lead a good and kind life.

And a thousand other things. Big and small. Some insignificant and others seriously life-altering. Some completely imagined and outrageous and others a reality in the future.

Then, as life moves along, there is actual stuff you need to deal with. Such as what to do with the low muscle tone, the differential treatment, the restless sleep, the developmental delays, the sensory issues, being looked at funny, the semi-constant respiratory illnesses, hearing loss, the wildly erroneous stereotypes, vision problems, people first language, and so on.

Or maybe you don't. Maybe your kid with Down syndrome doesn't have or have to experience any of the issues linked to Down syndrome, or maybe she'll have and meet many of them. There's no way of knowing.

As with any child.

Any. Child.

Sometimes the universe decides to remind you that your kid is just a regular kid. Remind you in the nastiest of ways. "Yes," the Universe will scream at your face, "she might have Down syndrome, but she's still just a kid, and I can take her down if I so desire."

Your tiny one is hit with a health problem that has nothing to do with Down syndrome. A mysterious one at that. The kind that makes you wish Dr. House was real and could crack this fucker right open. And heal whatever was ailing your precious little baby.

Rip you out of every parent's nightmare that could take over anyone's life.

Still, While you're spitting out salty water you take a look around and realize that, yes, while you are kind of fucked and that a boat passing by might be a while still, you are in fact afloat.

You are not drowning because you are so damn lucky.

You have on a fancy life vest that covers every medical expense and there's all that stuff that came off the boat before it sank that went to quality medical schools and will take your every single call.

You have that special someone treading water right beside you and not hogging the piece of floating wood like that rich chick in Titanic. You take turns.

You learned to swim early on and you know you can keep swimming for quite some time still. And the little one is proving to be an excellent swimmer.

You realize that things could be so much worse. And for many they are. And that you are so fucking lucky.

This girl loves water. That's why she's hitting it.

Saturday, May 12, 2012

A day for me? Seriously?

And not for her? WTF? 

I've never been one for labels for myself. Or, actually, I've never been one for labels that I haven't chosen for myself.

As long as I can remember I've 'reserved the right'. That's right, just reserved whatever there was to reserve as far as anything to do with my identity goes, and told everyone else telling me what to be or do to go screw themselves.

I'm easy and uncomplicated like that, you see. 



'Mother' as a label I chose. After nine years of marriage - during which I'd roll my eyes when anyone called me 'wife', and instead chose to describe myself as a 'trophy wife past her prime' (Ironically, I think. I reserve the right to be hipster-ish without anyone daring to call me a hipster. !) - I chose to become a mother to Babe. A mother to a child with Down syndrome, but really just Mother to Babe

She was in my belly. Kicking at several different organs.


Mother in Finnish, Danish and Spanish.

Those are the three the Babe's currently attempting to master. For those of you wondering, the process is at AAUUUYYYIIINNNGGG+raspberry (loudly and followed by a little gagging sound) at the moment. Scientifically speaking of course. 

You'd think that after being on semi-permanent vacation/ married/ doing charity/ shoe-shopping in a maniacal fashion/ 'studying'/ reading/ teaching/ drinking far too much wine/ pretending to be a photographer/ being the foreigner for nine whole years, I'd had more grasp on what parenthood actually required and what it would really be like to be someone's mother. 

But no.

I seem to be bit of an expert when it comes to Down syndrome and parenting a child with Down syndrome (okay. Not an expert per se, but at least I know something), but plain 'parenting a little being'....

No fucking idea.  

But almost exactly seven months down the path lined with dirty diapers and Dr. Brown bottles, the Babe's still alive (high five folks, who would have thunk it?), joyfully kicking at my c-section scar (the feeling's just returning to it) whenever I pick her up, smiling at me when I sing her preferred lullaby - Mercedes Benz by Janis Joplin - to her, taking baths with the kind of gusto that leads me to believe that she thinks I might never give her a bath ever again, munching on mashed avocado as if she knew the first time I ever tasted one (and avos are on my 'I'd survive on these five foods for years in a zombie - werewolf apocalypse' list) was when I was 19 years old, smelling all cutesy and new all the time, and just generally being all happy and content.

Even with me for a mother.  

Still, I'd like it to be publicly considered that I no longer have a high-maintenance multicolored mohawk, but an easy to do ponytail friendly do instead.

That has got to count. Like a lot. 

I think I deserve breakfast in bed. You know, for no one dying before their time and child-friendly hair. 

Just saying.

Mothers rock. Word.