Hurts and Hopes

It still hurts sometimes to see other babies close in age to Finn - younger even - and to see all the things they do that Finn doesn't do. I try to focus on Finn himself, and all the things he cando, but sometimes the comparisons are unavoidable. I wish I could say with honesty that I've made peace with it. It's a process. Maybe a lifelong one.

It hurts that my son is part of a class of people who are still vastly misunderstood, avoided, ridiculed, belittled, and looked down upon.

It hurts to know without being told that there are plenty of people who are glad it didn't happen to them.

It hurts, too, that still, people who know me openly worry and fret about their "typical" children's development. As if a delay in any area would be beyond their ability to accept and deal with. What does that say about how they really view Finn?

***

As 2009 winds down to its end, it's hard not to think about goals for the coming year. I've pretty much resolved to forego making official resolutions, although I certainly want to work on things that I know can better my life and that of my family. New year's resolutions have a way of eventually (sometimes very quickly into the new year!) leaving me feeling disappointed in myself for not meeting the lofty goals I was so motivated to set at the end of December. So I skip the resolutions these days.

That said, I still, of course, have hopes and visions for the coming year, maybe especially for Finn.

I hope Finn walks this coming year. It's a reasonable hope, I think. He'll turn two halfway through the year, and by year's end, he'll be two and a half. So walking is a reasonable hope. But I also know full well that it he may, in fact, not walk this coming year. So I'm trying not to pin my hopes too firmly on this, but I can almost see it in my mind's eye. Maybe he will.

I hope Finn speaks a couple of words this coming year. This hope leaves a hitch in my chest and a tightening in my throat. My baby is almost a year and a half old, and he doesn't yet say a darn word. I know this is not at all uncommon in children with Down syndrome. They are, after all, notorious for their speech delays. Finn babbles plenty, and has for ages, but he doesn't say a single understandable word. He doesn't even know any signs (which is really the fault of his family). Communication, of course, goes beyond spoken words. When he reaches up for me, when he grins at me, when he crawls over to his booster chair and tugs on the straps, when he wraps his arms around my neck and pushes his face into me - I know what he's saying. And when I sing to him and hug him and tickle him and smother him in kisses and tell him I love him, and he smiles his big smile at me - I believe he understands me. But still, I long to hear his voice forming words.

I hope over the coming year Finn leaves baby food behind. It's all he eats currently - that and breastmilk. He has definite texture aversions that we need to overcome. I'd like to feed him peanut butter and jelly sandwiches like his sibs eat.

I hope over the coming year I can find some balance with the amount of therapy Finn receives, and make peace with it. I'm not there yet. When he was receiving therapy every week, it began to feel suffocating. I didn't (and don't) want his babyhood to be overtaken by therapy. So we reduced services. And I've been second-guessing myself about it ever since. I want to trust myself as his mother, to believe that I know what's best for him, but it's hard when it seems like everyone else is making a different choice than I've made, and the experts all seem to think we need to be doing more for him. So I hope to get to a place with all this that feels right.