What we haven’t lost.

Melissa

Since losing the STX209 we’ve lost a lot. We’ve lost the ability to spontaneously change our plans for the day, we’ve lost the ability to take Caleb to large gatherings, we’ve lost the ability to take Caleb confidently out into public period. His anxiety is…I have no words for it.

What kills me is that he appears, to the general public, bratty and he’s not. He’s a really, really good kid. He’s just scared of the world right now. I hate it. I hate the looks when he yells because we have to stand in the check out line, I hate the looks when he cannot sit quietly at a restaurant while we wait for our food, I hate the looks when he cannot try on a fucking backpack for school without tears. I hate all of it. The fear I see in him tears at my heart every single day.

But I don’t want to talk about all that, because it makes me cry…it makes my head and my heart hurt. What I want to talk about is what we haven’t lost…we haven’t lost Caleb. He hasn’t lost his words. He is constrained by the anxiety, we’ll deal with that, but he’s not locked in the fragile X box. He has more words now than he did a month ago, a week ago, and his language is more appropriate to the situation.

Last week we went to Target, we do a lot of that these days because it’s Caleb’s favorite store and, hey, it’s TARGET…Mommy likes it too. When we reached the check out…

Caleb: Hi!

Cashier: Hi! How are you?

Caleb: Good, yourself?

Cashier: I’m good, thank you.

Then he helped Eric finish paying for the random very important crap we’d bought. He had a conversation with a stranger! Wha?

Or this weekend when we went in the (surprise) Target dressing room trying desperately to find uniform shorts for the boy who has apparently SKIPPED size 10 pants and is borderline outgrowing size 12 (at least in the waist, his legs need to catch up!) Oy.

Caleb: This room, this one? (pointing at the very large handicapped dressing room)

Me: Sure.

Caleb: (Looking around) It’s a nice little room.

Me: (laughing) You like this room?

Caleb: It’s a nice totel (hotel) room!

(After trying on a pair of pants and 2 pairs of shorts that didn’t fit)

Caleb (to the woman collecting the numbers as I handed over all the clothes): Just can’t win.

Me: It sure feels like it, doesn’t it bud?

So he’s there, he’s with us and he’s keeping the words. That was our biggest fear and it was not realized. Now if we could just get the kid to leave the house willingly again, that would be super.

**I hope very much that this is the last of these posts. I’m tired of feeling bitter, angry and hopeless. I’m tired of feeling so very sad for him and for us. There is more to come, I know this. I want to be looking for it and not at what we’ve had to leave behind.**

 

 

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