Sad

I’ve given the sadness I felt in my dream from a few nights ago some thought.

The obvious meaning is that I’ve never really acknowledged my sadness over O’s diagnosis. Except, during the waking hours, I’m not sad. Not really. I don’t have time to be sad, nor do I have the inclination.

Olivia is awesome. She’s funny, she’s healthy. She’s got this amazingly strong sense of self. She can be so stubborn and yet incredibly sweet all at the same time.

And yet…when we got her diagnosis, I mourned for her. I felt like some of my dreams for her, my sweet daughter, were being taken away at the mention of 5p- syndrome.

I can go on and on about not ever wanting limit Olivia but obviously there are some things that 5p- has taken away from her. She may never have children, not only because she might not be able to care for them but also because of the fear of passing on the syndrome. There is a fifty percent chance her child would have 5p- too. Of course, who knows where reproductive technology will be in twenty years? She might be able to have this sort of thing screened before conception. And yet…even that feels like a dream has been taken from her. If she wants to and is able to raise children, she’ll have to decide how far she wants to interfere with her future children before they’re even conceived.

This makes me sad. For her, though. Not for me. I have no reason to be sad for myself.

To be honest, the thought of Olivia living with me forever doesn’t make me sad, not for me. For her and her possible loss of independence? Yes, but not for me. I love this girl so much and I would hold her tight to me forever if I could.

But I want so much more than that for her. I want her to be independent for her, I want her to chase her dreams, to dream big and know that nothing is impossible. The fact that there might in fact be things that are impossible is what makes me sad.

We’ve been taking about school next year. What will be Olivia’s next step? Kindergarten? A repeat of Kinderkids? She’s got her letters down. She’s great at writing her name and her numbers. She can count to 59 before she gets bored and doesn’t want to tell you that 60 comes next even though she knows it does.

Maybe the looming IEP is bringing this all to a head. I tell myself I’m not worried about it but…I am. I worry about her even as I glory in who she is, how wonderful she is, how lucky I am to be her favorite person in the whole world. I have to live up to her expectations, I have to push hard to get her the opportunities she deserves, the chances she needs to prove to everyone else how amazing I already know she is.

This special needs parenting gig? It’s not for the weak of heart.