It's All About Me

It's mentally exhausting to go back and forth between

A) Talking and thinking about Keira's deficits, differences, and worst case scenarios and

B) Recognizing and celebrating all of Keira's progress, uniqueness, and accomplishments that so far have defied the odds, and hoping for the best possible outcomes.

The former I use with doctors, lawyers, social security, or anyone with whom I must impose the gravity of K's condition. The latter I use as her mom. It helps me stay encouraged and to be encouraging. It helps me remember she's my daughter, my baby, and NOT my client. It's not too hard, lately, to be excited about how well she's doing, unless I'm face to face with other babies of the same age.

Both A and B are true, but require a bit of mental gymnastics to shift from one to the other. I think both are necessary as well. However, I worry that if I'm too good at B, it will effectively downplay A and make it impossible for her to continue to get services as she grows. I don't want to end up in that cavernous gap in which one is too high functioning for services but too low functioning to succeed in the mainstream. I'm getting ahead of myself...

Again, this is so much more my problem than hers. I was recently reacquainted with a great Winnecott quote: "There is no such thing as a baby. There is always a baby and someone." I am Keira's "someone"  and I don't want my narrative of her to read, "Disability." So, I want to be sure you know that Keira has the wittiest smile. She works with all her might to align her gaze and when she does it in your direction...watch out. You might need a hanky! Keira has deceivingly long eyelashes. When you think there's something stuck in them it's really the blond tips. Her delicate hands have grown pudgy from the inside out. They kind of look like those clowns' balloons when they are half filled to make an animal with a tail. K has the softest, most malleable ears I've ever seen. She currently has normal hearing, can push her torso and head up off the ground from her belly, and bats at her toys. She latches on like a python when it's time to nurse. She loves showers with Mommy.