Friday, May 29, 2009

Where I Live

Road trips can be very bad. Consider four girls trapped in a moving tin can for about six hours. Yes, the fights, boredom and tears pour out in droves.

But road trips can also be very good because sooner or later all the above mentioned angels fall asleep or zone out or simply give up and drift into silence. At those moments Head Honcho and I can finally have a conversation. You know--the kind where you make a statement, he hears it, you do not have to shout and repeat yourself 20 times, no one interrupts, he replies, you can hear his reply quickly without misunderstanding "I think so too" as "You stink, you're poo." Conversation.

And so, while cruising the roads of Indiana, I timidly (I know it's hard to imagine me as timid but this was a icky subject) brought up how things are going with Stinkerbell. Or maybe how things aren't going. As in she's now 3.5 years old and not talking.

Here's the deal: I am blessed and encouraged when people say "she's fine" "She'll be fine" "my brother was a late talker" "she's going to take off any day now" "they can do so much with this sort of disability now". I appreciate the way everyone cares and wants to be positive. I really do.

But the cold hard facts are I just need to know where we are and admit it. Head Honcho felt the same way. We needed to say to each other: this kid is not talking, there is something seriously wrong, this kid maybe--probably--could never talk. There! Said! We both needed to name where we are living.

We are living with a little girl who is smart in many ways and then shockingly behind in others. We call her our swiss cheese girl--holes here, holes there. She does not talk. Sometimes, she says complete phrases. They appear out of the blue: correctly pronounced, understandable, in the right context. Perfect. And then we never hear them again. Augh. And she could have some other cognitive problems--like not being able to read or write. The specialists have warned us.

It's not that we aren't going to work and fight for the best possible outcome. And I'm not losing hope. I believe Stinkerbelle is capable of great things. But I need to admit to myself, Head Honcho and I needed to admit to each other, this is big...and scary....and it isn't just going to resolve itself....and we need to figure out how we are going to live with it. Change of address: we have a daughter who may never be able to live independently. There, said it.

Because that's where we live.


Chantelle said...

Once again, admiring your REAL-ness. (((((((((hug))))))))))

Recovering Noah said...

Man, I feel your pain. Am not going to offer a "it'll get better". It just plain sucks - spoken from one mom to another. (And for all those shocked that I wrote that... been there, done that, living it, and got the T-shirt).

Now.. I will say that there are all sorts of devices that can help nonverbal kids communicate. Also, have you looked into the Cherab foundation ( Sounds silly, but I swear that fish oil is helping Noah. Also, Stinkerbell's brain trauma happened on the right side - is that right? We're doing some special exercises with Noah and, I kid you not, he is babbling like crazy. If you want to email me your address, I'll make copies of the exercises and send them to you. Completely different from all the years of OT and PT. Just targets moving the left side. Anyway... realizing I should've just emailed you instead of hijacking your comment section...