There are levels… layers… of adjustment.

Today we met with Davey’s school team — school director, regular pre-K teacher, sped teacher, therapists — to discuss his Kindergarten program for the coming year. The meeting went well, we all agreed on the type of program and support he needs. And he needs a lot. A year ago, I envisioned him in the local elementary school with a one-on-one aide and pull-out therapies. This year… well, things change a lot in a year. It has slowly become evident to me that our sweet boy needs a more intensive program, less mainstream and more specialized.

And I am okay with that. When I focus on my son, on who he is and what he needs, I am truly okay and know that we can get him what he needs and he’ll do well, etc.

It’s just… the emotional realization kinda hits you in the knees.

Somewhere along the line, Davey went from a typical kid with Down syndrome (ha ha ha) to a kid with Down syndrome whose needs fall into the more rather than less spectrum. I thought, once I came to terms with my child having Down syndrome, that I had a decent image of what his life could be like. He doesn’t talk, but I knew he would. All that. Well, I still believe he’ll talk one of these days, but…  …..

And again, I am okay with it. He is a great kid and a wonderful person and I can’t imagine my life without him in it.

It’s just silly, my crazy heart flaring up.

The life I thought I could envision for him maybe does not match the reality ahead of him. It’s not a radical departure we’re talking about but it’s cloudier. Then again, I should know better. Nothing — NOTHING — about my son or his life has ever been certain. That he is even here, living and breathing, wrestling with his brother and chasing his sisters, is a miracle in itself. That he is loved, that he will experience life in the fullest, of those things there is no doubt.

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What helps none of this is the absolute crazy state of uncertainty about our whole lives right now. Talking about programs — in-district, out of district, which district — I started to feel the madness of our situation take hold in my chest. We have no idea where we will be living in the fall and for how long. This town? A nearby town? And which one? It’s all up in the air. Our immediate plans are hinging on decisions over which we have no sway. We are just waiting… waiting to hear. A few weeks, in a few weeks we should know. But I could have said the same thing a few weeks ago. Meantime I am trying to juggle the concerns of housing, finances, school for Edward, school for Davey…. It’s a little much but I have to keep everything in the air a wee longer.

Help me, Rhonda.