I had to come add more musings to this one. It’s been a rough few weeks, and not because of any health issues. At least not directly. It’s more the emotional toll all the constant change has taken on us as a family. It’s hard to explain how much of a weight hangs over this house, I think we all feel it and we’re so used to this heaviness that we forget it’s not supposed to be there. It’s our normal. But it’s still a huge shadow over life.
So here’s the deal. We are now in the throws of making the second biggest decision for Reese. Medical being first, but now her education has become top priority. As always we have choices and it’s a long process, so it’s not like there is anything happening tomorrow, but it FEELS like it. Because the holidays will come and time will leap forward while I sleep and all of a sudden it will be her third birthday in February.
That’s right, despite her waif-ish frame, and her living life like a 15 month old, our BABY girl, will be “eligible” (it’s a new fun state-appointed word), for public school because of her physical and mental disabilities. Yikes. I hate that word. But putting all the stigma and the euphemisms aside, that’s what we are dealing with. That’s FIVE half days a week away from home. And that’s overnight! So, of course this crazy dragonmom doesn’t just sit around and wait for change, she jumps off the cliff screaming like bloody hell into the wind. And THAT is why, it has become THE conversation for me. I refuse to give up control of our options, so the more time, the better. That’s why overnight we’ve started entertaining the idea of two days a week in private preschool now, to ease into the real deal come February. Yes, even if that means we drag out the stress of it all, too, I think.
So I am taking a moment to check my perspective. While my precious, completely unaware angel lies here, I see her little feet are bigger and I know that she now snuggles up into my side like a little person and not on my chest like a baby, but I don’t think I am ready for this change. No one knows what she needs outside of this house. We are asking strangers to learn her non-verbal, non-communicative language and be ready and waiting to meet her challenges when she serves them up. I don’t think we can ask others to do this. We are too hard on ourselves to be responsible for all that she needs or does that impacts others. I cringe at the thought of asking others to own this with us.
We are also hard on the world for there not being an easier way to accept Reese into its crazy ways. There’s no easy way to say your head hurts, or that you’re scared, when you don’t even realize you feel this way. Our table-loving, sitting-still school society is not going to handle her busy feet very well. And um yeah, there’s also those seizures. In a hurricane of 8 toddlers, my silent baby will have no way to call for help, and that makes it hard for me to breath.
I will be stressing about these decisions for a while I think, and I am not going to be letting go of how heavy our hearts are. But as always, we are going to find a way to handle this change and not let it handle us. And that is all the perspective I can muster right now, because from here these toes still look pretty little to me.