resources in our area. I’m just checking to see if anything has changed since Lily was admitted.”
“You could’ve asked me if something has changed. It’s a little unsettling to have a complete stranger poring over Lily’s chart notes.” I attempt to sound reasonable, but I know I’m failing miserably. I sound defensive and, frankly, rude. I just don’t want some social worker coming in here, trying to label Lily when we don’t really know what’s going on.
“Actually, what I’d like to do is get you in contact with someone from Exceptional Education for Exceptional Children; they are a parent-advocacy group that can help you find the best placement for kindergarten this fall.” She pauses to pull a business card from her purse. “This is Cameron James’s number. He’s a really wonderful parent advocate, full of lots of great information about the Gaston County School District.”
“Thanks, Ms. Nix, but isn’t this is all a little premature until we can figure out what’s wrong?” My voice shakes, betraying my fear. I thought Lily would’ve developed more before she started school. Our goal was to have her ready by kindergarten, but Lily barely knows her colors, the alphabet, how to count to ten. She’s nowhere near ready.
“Of course,” she concedes. “The last thing we want is to jump the gun, but Lily will need to start school in the fall, regardless of whether she has a diagnosis. The school district will do some assessments to see what class will best suit her.”
I stare at her blankly. I have successfully avoided kindergarten registration. I can’t fathom what next week will look like, let alone thecoming school year. I can’t register Lily, because I can’t let go of the dream I have of her attending our neighborhood school. The best one in the district, the one we chose when we were buying our home. PTA bake sales and book fairs; I was going to be the soccer mom cliché. In light of everything else going on, it seems silly to be holding out for that. Still, something about letting it go feels like a finality that I’m not ready for yet, and I will be damned if this pint-sized pixie forces me into it.
“I understand what you’re going through,” she says.
I feel my body flinch, like the words have physically struck my face.
Like hell you do! You don’t know an effing thing about it.
“Right.” I watch her face fall as the sarcastic bite of my word penetrates.
She shakes her head and sighs heavily. I
almost
feel bad. Almost. She ignores my attitude and continues explaining. “My daughter, Jenny, is nine years old and has Rett syndrome. I
do
understand and I have been where you are.”
Okay. Now I feel bad. “I’m sorry,” I mutter, ashamed.
Why can’t she just be a bitch?
Being angry is so much easier than being hurt. It makes me feel like a warrior, and I thought that’s what I needed to be. I only ended up fighting the truth and the people who could’ve helped me accept it.
“Don’t be,” she says. “I just want you to understand that I am not your enemy. I’m here to help.”
I think back to what Max said about letting people in and allowing them to help shoulder the burden. Pushing everyone away can’t change Lily’s prognosis, and yet that’s what I’ve been hoping for. I doubt I would’ve pushed away anyone willing to tell me that all the doctors were wrong, that Lily would be fine.
“Will you leave me your card, too?” I want to ask a million questions, but not in front of Lily. I want to know how this woman can mention her daughter’s disability and not burst into tears or throw something across the room. I want to know how to stop hating otherpeople for their perfect children. I want to know how to move on. I want to know how to live, when the life I was supposed to have was ripped away from me.
“Of course,” she chirps, clearly happy at my change of heart. “We can set up a time to talk in the next few weeks, if you’d like.”
“I
“You could’ve asked me if something has changed. It’s a little unsettling to have a complete stranger poring over Lily’s chart notes.” I attempt to sound reasonable, but I know I’m failing miserably. I sound defensive and, frankly, rude. I just don’t want some social worker coming in here, trying to label Lily when we don’t really know what’s going on.
“Actually, what I’d like to do is get you in contact with someone from Exceptional Education for Exceptional Children; they are a parent-advocacy group that can help you find the best placement for kindergarten this fall.” She pauses to pull a business card from her purse. “This is Cameron James’s number. He’s a really wonderful parent advocate, full of lots of great information about the Gaston County School District.”
“Thanks, Ms. Nix, but isn’t this is all a little premature until we can figure out what’s wrong?” My voice shakes, betraying my fear. I thought Lily would’ve developed more before she started school. Our goal was to have her ready by kindergarten, but Lily barely knows her colors, the alphabet, how to count to ten. She’s nowhere near ready.
“Of course,” she concedes. “The last thing we want is to jump the gun, but Lily will need to start school in the fall, regardless of whether she has a diagnosis. The school district will do some assessments to see what class will best suit her.”
I stare at her blankly. I have successfully avoided kindergarten registration. I can’t fathom what next week will look like, let alone thecoming school year. I can’t register Lily, because I can’t let go of the dream I have of her attending our neighborhood school. The best one in the district, the one we chose when we were buying our home. PTA bake sales and book fairs; I was going to be the soccer mom cliché. In light of everything else going on, it seems silly to be holding out for that. Still, something about letting it go feels like a finality that I’m not ready for yet, and I will be damned if this pint-sized pixie forces me into it.
“I understand what you’re going through,” she says.
I feel my body flinch, like the words have physically struck my face.
Like hell you do! You don’t know an effing thing about it.
“Right.” I watch her face fall as the sarcastic bite of my word penetrates.
She shakes her head and sighs heavily. I
almost
feel bad. Almost. She ignores my attitude and continues explaining. “My daughter, Jenny, is nine years old and has Rett syndrome. I
do
understand and I have been where you are.”
Okay. Now I feel bad. “I’m sorry,” I mutter, ashamed.
Why can’t she just be a bitch?
Being angry is so much easier than being hurt. It makes me feel like a warrior, and I thought that’s what I needed to be. I only ended up fighting the truth and the people who could’ve helped me accept it.
“Don’t be,” she says. “I just want you to understand that I am not your enemy. I’m here to help.”
I think back to what Max said about letting people in and allowing them to help shoulder the burden. Pushing everyone away can’t change Lily’s prognosis, and yet that’s what I’ve been hoping for. I doubt I would’ve pushed away anyone willing to tell me that all the doctors were wrong, that Lily would be fine.
“Will you leave me your card, too?” I want to ask a million questions, but not in front of Lily. I want to know how this woman can mention her daughter’s disability and not burst into tears or throw something across the room. I want to know how to stop hating otherpeople for their perfect children. I want to know how to move on. I want to know how to live, when the life I was supposed to have was ripped away from me.
“Of course,” she chirps, clearly happy at my change of heart. “We can set up a time to talk in the next few weeks, if you’d like.”
“I
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