11 February 2013

Hardship Cues

When I was pregnant with Abigail, we knew about her heart condition (but not the Ds) and the doctor told me that as long as I was pregnant, there was no stress on the baby's heart, so we didn't have to worry about her just yet. I didn't want to give birth. Because it would cue the hardships.

It is with that same heavy heart that I don't want Abigail to grow up. Not because she won't be a cute little baby with pigtails anymore, but because it will cue more hardship.

These last few days have been a big mental struggle for me. I'd been having a hard time shaking body aches and fatigue since getting over the stomach flu, but when I finally felt 100%, I was promptly hit with a barrage of emotions about Abigail. It's the usual bullshit. The usual depression. The why-the-*#&$-won't-this-just-go-away? kind of stuff. The kind of stuff I get to deal with for the rest of my life.

There isn't a single day of my entire life that doesn't go by without Down syndrome crossing my mind at least once. During the first six months of Abigail's life, it was a constant, obsessive thing. I couldn't stop thinking about Down syndrome. During the next year or so, it got easier and easier to deal with the emotions, I thought about it less often, and the thoughts were less significant. Nowadays, when the thoughts pop into my head, they're usually quick, easily dismissible thoughts. Like, I wonder when so-and-so-with-Ds officially started walking and if Abigail will be there by the time she's two too. Or, those two bottom teeth are really coming in crooked. I wonder if that's a Ds thing? I'm not involved in any Ds support groups in Chicago (it doesn't seem worth it to get involved since we're only here for a year), but I do notice that the lack of support really makes a difference when I'm struck by a negative reality of my life.

The two catalysts for my spiral was the reading of a blog post in which it was discussed that a 20-something with Ds needed her mother's help in the shower. Another blog revealed that another girl's mother had a hard time understanding the speech of her adult daughter with Ds unless she was looking at her, thereby offering lip reading assistance.

I don't think about the specifics of Abigail's life as an adult. I imagine that she'll live with us, maybe we can add a sitting room and kitchenette to her space to give her some more independence. I imagine that we won't be able to travel as much as typical empty nesters and that we'll have to be more careful with our money. But I don't think about the ins and outs of daily life. Like, what level of supervision do average adults with Ds need? Will I be able to do independent activities? Adult day care sounds very humiliating and degrading to me right now and I'm not interested in entertaining the idea of Abigail spending a few days a week in such a place.

So when I hear about other people who are difficult to understand and need help with basic hygiene, it gets me pretty depressed. I want Abigail to be loved and respected. I know this battle is only going to get tougher. More and more when we're out, I notice people staring at Abigail longer than is typically socially acceptable. Sometimes people do double takes in a grocery aisle. Sometimes the cashier refuses to acknowledge Abigail even though she is smiling and waving at them.

Other times, people stop me to tell me about their friend's cousin who had Ds and how loving and happy Abigail will always be.

Like I give a shit.

I want to sock these people in the stomach. Tell them to mind their own business. They them what a grouchy, crabby baby Abigail was this morning and about how she threw her oatmeal on the floor again. Just to prove that she's normal.

I don't know what I want. I don't want to avoid talking about it (it is just as awkward for me to sit around a play date and have everything ignore it as it is to have everyone telling me what an angel Abigail will be) but sometimes I get so sick of Ds invading everything and I just want to spend a little time having normal discussions.

So I don't know what I want. But I do know 10,000 things I don't want.

And part of me wonders if this is all just me being hormonal because it's that time of the month and that my feelings of depression can be controlled by my menstrual cycle just pisses me off even more.

Ugh. So here we are again in the long, low valleys between mountainous highs. A time when my 20-month-old still isn't walking, still doesn't say even one word, takes 1-2 steps backward for every 2 steps forward we take in sign language development, doesn't eat, isn't gaining weight, and refuses to use her own abs to hold herself upright when I carry her around.

I deal with it all by taking things day-by-day. I try not to stress about a future that hasn't materialized yet. Abigail's not overweight now, so why worry about what do with potential weight issues in the future? I can still get lots of clothing that fits her, so why worry about finding a tailor in the future? I don't try to picture specific things Abigail and I will do when she's 30 and I'm 55. I focus on our 5-10 year goals, I pay attention to the Ds community when I feel strong enough to handle it, and I try to keep Abigail's best interest in mind.

Sometimes, like right now, it seems like everyone else is talking about Italy and I'm stuck in Holland. I'm trying to figure out the balance between letting myself be mad at Holland and learning to appreciate its beauty.

1 comment:

Liz E. said...

Sorry :(. I hope you find more support soon to vent/unburden with someone who knows exactly what you are going through.