It’s the little things

A friend of mine recently made an interesting comment to me.  I was just administering some of Aliyah’s vitamins, and she said (something like), “I was just thinking how normal you seem.”

Ha!  If only she knew.

I just shrugged modestly (because of course, while I am super-confident super-mommy, I must not give that away, and I can’t think of witty comments spur-of-the-moment anymore – you need to be well-rested to do that).  Later on, while contemplating our family’s normalness (or lack thereof), I realized a few things.  Firstly, we do have a major challenge (cystinosis, not Aliyah) to live with daily; secondly, we are totally normal (because who does not have some kind of major challenge to live with?); and thirdly, we are totally not normal because we have a lot of funny (or weird) little cystinosis-related things that make our days unique.

And I don’t want to forget the little things, because they are what make us laugh, cry, and overcome!  Here are just two of the funny little life-changes we face.


Aliyah has become mobile.  Rather suddenly.  She isn’t walking yet, at 16.5 months, but she bum-scooches everywhere, her particular favourite location being the stairs.  And actually, she’s a pretty darn good climber already, largely because when she gets to the top (with me closely behind her), she wants to climb back down again (on her feet, which is only slightly frightening), and when she’s back at the bottom, she turns around to begin all over again.

What does that have to do with syringes, you ask?

Well, if I had any common sense, I’d do all of Ali’s liquid vitamins sitting at the kitchen table.  But since she likes motoring around, I’ve started just pulling the tube out of her onesie and popping in the vitamins in, one by one.  And since she beelines for the stairs every time, I’m left with a little baggie of vitamins climbing up the stairs, trying not to pinch the tube (and thus wear a lot of strange smelling vitamins) while I administer these tasty treats.  I’ve learned that it takes 6 stairs, minimum, to empty all of those syringes into her g-tube.

I’ve also learned that smelling like potassium isn’t so bad.

Urine Enough Diapers Already! (haha, get it?)

About eight months ago, I was a cloth diapering tree-hugging mommy, doing my best for the environment by diligently covering her little bum with cloth.  Then she decided water was “the thing” and breastmilk was no longer interesting.  Within days of Ali becoming a water-lover, I was wondering what the heck I was doing wrong with her diapers – she just soaked through them constantly!  And they shouldn’t have been leaking, since they’re BumGeniuses and no small cost (well, unless they’re from Kijiji, which mine are).  Now I understand the problem.

Aliyah is a pee-tsunami.

She doesn’t trickle, this baby of mine.  No, she’ll be dry one minute and flooded the next.  Today, in fact, she drenched through 4 pairs of pants and onesies, never mind diapers, and not for lack of being changed!  She drinks like a camel (only more often) and pees like an elephant.  She did manage to pee on the toilet for the first time yesterday, by her own will, so hopefully this incredible pee torrent will lead to swift potty training.

We change her diaper before bed, at midnight, and at 6am, and she’s wet every time.

Sorry, dear landfill, I can no longer do my part to save you.

Anyone want some Bum Geniuses?


2 Comments (+add yours?)

  1. beth@redandhoney
    Nov 03, 2011 @ 14:05:03

    Hurray for doing the stairs, Ali! I’d love to see that in action 🙂

    As for the BG’s… are you for real getting rid of them? I want them!!!


  2. Crystal
    Nov 06, 2011 @ 03:35:06

    Yes, ma’am, they are up for grabs. When are you down next? (I don’t think we’ll be up for a few months – DESPERATE to finish the basement already and weekends are the only time to work). We miss you guys, btw!


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s

%d bloggers like this: