like it's a swear word! A nasty condition. A dreaded...incurable something. Aghhh! We have FOUR daughters. Yes...really. With our oldest turning eleven this year we've slowly been easing into this territory, while biting our nails and shuddering at the thought of becoming parents to a pre-teen.
Last week Ellie was digging at her armpit constantly. I thought initially it was that her sleeve was a bit tight and bothering her, an annoying seam maybe. Upon closer inspection I found a few dark, long hairs! I nearly hyperventilated on the spot. I mean, we've been warned that girls with Rett often experience early puberty (which just makes it all that much more of a nasty syndrome!) Like a lot of things, I chose to believe that it wouldn't be that way for Ellie. She's ONLY 9! Shaking my head right now because really I still can't believe how I sometimes just stick my head in the sand. She's gained like 15 lbs this past six months, grown nearly a foot and is filling out to the point that she doesn't look like a little girl anymore. Her dad and sisters have been complaining all summer about how stinky she gets when she's outside playing and getting sweaty. It's hard on this momma and in spite of my trying to ignore the obvious, things aren't heading in a direction I want to go.
Now, in all honesty puberty isn't terrifying to me with our typical girls. I mean, it's inevitable with all of them. Something just seems completely unjust and wrong about Ellie going through puberty at all, let alone EARLY. I mean we JUST got the toilet training done the summer before last. I still complete all of Ellie's personal care for her because she can't independently bathe, dress, toilet, brush, etc. I was thinking she'd stay looking like a little girl till she was like 20 or something, maybe until they get the whole cure thing figured out. Sigh. It's so strange how it's happening so fast for her, like a switch got flipped and she's suddenly...very suddenly growing up.
I have so many fears about this and a lot of anxiety about how this all plays out. My first reaction was "is there a med for this?!" (and I hate meds) and then my next thought was "maybe something that could just buy us like say 10 years?!" and then "let nature take it's course" and then "but rett has hijacked her body...this isn't natural...it's rett" then back to the "just make it stop!"
I mean, it's all fine when as a typical mom I had "the talk." I've done that, and I thought it was hard but honestly, that's doesn't seem so tough anymore. I'm thinking about shaving, periods, cramps, bras and a grown up body for a girl who doesn't even like me washing her hair. The girl who removes her clothes if they get wet, regardless of where we are or who's around. The girl who only poops at school if it's an absolute necessity and if either I or her aide of 3 years is with her. Toileting is one thing, but I'm thinking about how she's going to have to have help with pads or tampons at some point; at home AND at school. That's just a really really tough thing. I'm fearful of that and I'm her mother. This world feels very wrong and unjust in the scope of all this.
Sometimes I'm guilty of looking around at parents of typical kids and wanting to scream at them how easy they have it. Though I know better, sometimes Ellie's easier than a typical kid! More than once, I've heard people talk about their kids growing up and getting more independent and felt frustrated and alone. I've been part of conversations that include the line, "when they kids are all out of the house" and disconnect. In my disconnect, I think about never having to suffer the "empty-nester syndrome" and getting to spend everyday with someone who loves simple things and is perfectly content and satisfied in who she is. Life is like a venn diagram...there's some overlap in the middle of our worlds. Yet, we all have that part of our circle that's just us. The part that God has set out just for us, some to grow us, some to bless us.
