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Grace turns thirteen tomorrow.  13.

Thirteen is supposed to be the start of teenager-dom.  It’s supposed to be about navigating friendships, big emotions, limits, learning, taking steps toward independence. We should be a year away from teaching her to drive. For us though 13 will be very much like 12, 11, 10 and the years that came before those. For better or for worse Grace is Grace, and while she’s always got something going on in many ways she is the same. She’s completely dependent on us. We feed her, get her dressed, brush her teeth, comb her hair, change her diaper, crush the medicine and put it through her g-tube in the hopes of fewer seizures and leveling off the chemistry of her body that’s just not quite “right”. Much like an infant or toddler, her schedule knows some flexibility but there are always consequences if we don’t follow the schedule. We don’t have the flexibility with Grace that should come with a 13-year-old.

In some ways, it’s a miracle that she is where she is. That she is doing as well as she is. What would raising Grace look like 40+ years ago when my parents were raising me? Or what would it have looked like if she were being raised when they were? I know the world has come a crazy long way. Accessibility has. Pink helmets have. Medicine has. Education has. Technology has. But sometimes it’s not enough to know how far we’ve come. I just want more. More normalization. More kindness. More accessibility. Less isolation. More flexibility. Less jumping through hoops.

Grace’s teacher recently let us know that at Grace’s IEP meeting in a few weeks it will be Grace’s first transition meeting. To be honest I haven’t studied up on that whole thing as much as I should have. I haven’t wanted to deal with her transition to what happens after high school. You are supposed to send your kids to college, not try to find a group home, or ways to keep your child in your own home (on purpose). I don’t think I’m ready for all of that yet. She’s this beautiful girl, as I write this she sits across the room from me in princess pajamas, playing with a toy meant for a 6-month-old. I can’t even imagine what our world looks like when she’s done with high school. It feels like we are preparing for her to just drop off the face of the earth- years before it’s scheduled to happen.   Of course, Kevin and I will not let her fall off the face of the earth. And as her IEP approaches, we’ll do the paperwork and ready ourselves for the first of many conversations. What choice do we have?

I wish I was happier to celebrate her birthday but I’m not. Graham’s been pushing. He can’t understand why we wouldn’t have a party. It feels cruel to explain to him that it’s because her birthday makes me sad. He shouldn’t have to process any of that – and I’m so grateful that he’s not sad.

So at this point, my conclusion is that I need to be sad when I need to be. I have a few hours marked out on my work calendar as vacation time to just be on my own this week. Other than that I’m getting ready for her birthday and blaming her lack of a celebration on the weather and that her birthday is on a school day. I will hang up the birthday banner. Wrap the presents. Sing. Take her picture like I do every year. Send light up balloons to her special ed room at school. Invite our friends to go bowling next weekend or come over to the house for a bit. And I will celebrate her attitude. Because of all things, teenagers are supposed to have; Grace has attitude. She can be so stubborn. So persistent. So fired up. Her spark inside continues to develop against all odds. I love her more than I can ever say. And I will continue to look for ways to have her and her “tude” shine.

Joy

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