Life and Lims

It’s difficult for me as a mother, period, and as a fellow mother of a daughter with Down syndrome, to read the words of Hallie Levine, who says she would have aborted her daughter during her pregnancy if she’d had the diagnosis then. Sure, she says now she’s grateful she didn’t, but she asserts she should have been able to and that others should be able to do so as well. Aside from all my other feelings on the subject (and I have many), I’m going to focus on one phrase she used: “I never signed up for this.”

Having heard a man whose wife is now paralyzed from the midsection down say the same thing in regards to being married, and other people in tough situations make the same remark, it strikes me that we live in a society where we really feel we should only face things we’ve agreed to. We’re so focused on freedom of choice, on contracts, on knowing so much about outcomes and possibilities, that we feel we can and do control our lives.

Assuming some equal opportunity (and that’s a topic for another blog post as well), let’s say we all get to choose the level of education we attain and what we study. We get to choose our line of work. We choose our marriage partner, if we marry. We choose how many children we have and how to raise them. We plan for and choose when to retire, and what to do in retirement.

We “sign up for” these things. We sign on the dotted line for many of them. Life is a series of contracts that we choose to accept or deny. And we’ve written escape clauses into the contracts. Many of us spend years choosing whom to marry, and when to do it, but even a few years into the contractual relationship, divorce is readily available to let us out of that signup. Pregnancy? We can avert it with birth control, we can terminate with abortion.

But how about we step back a moment and consider that life is not really within our control. It’s not just one contract after another. And when events in our era are finalized in this manner, stamped with a legal seal of approval, they often get boiled down to simple terms that don’t fully encapsulate the “real deal.”

Life is messy. It’s complicated. It involves all kinds of unpleasant surprises that we tend to think of as happening to “other people.” Even aging and death seem distant to us today, that somehow they’ll never happen to us. But they do. And the older we get, the more we experience, the more we realize that death will happen. Aging will happen. We’ll get sick, we’ll be limited in some way physically. These same things will happen to our spouses, and eventually our children.

Levine says she wouldn’t want to see someone else “forced into” her situation. But simply being alive forces us into all kinds of situations we’d rather ignore or pretend don’t exist or won’t happen to us. Choosing to get married leads us down a path in which we may very well have to care for a spouse who becomes disabled physically or loses his memory, among a host of other scary possibilities. Choosing to have children leads us down a path in which we may care for a child with a physical or intellectual disability or mental illness or any number of possibilities we never envisioned for ourselves. But those paths are real.

I don’t deny that it can be overwhelming at times to parent a child with Down syndrome. That’s just one of those “scary possibilities” I know firsthand about. I grieved for a few days when I received the results of my amniocentesis. It was an experience I didn’t count on. It was a loss, the loss of a “typical” child-rearing experience I had counted on. But life presented me this path, and I’m on it.

I don’t have any idea what other challenges lie ahead of me on life’s path, as a person, as a wife, as a mother. I won’t deny that I’ll grieve, be scared, be overwhelmed, be frustrated … any number of normal reactions. And I definitely won’t “sign up for” any of these challenges. But that’s life. And we’re all in it together. We can’t (and, yes, while many disagree with me, I heartily say “shouldn’t” when it comes to aborting in most cases) prevent these difficulties. We can learn from them, do our best to deal with them, and support each other through them. I hate to see others go through tough times, but I’ll eagerly “sign up” to lend a shoulder to cry on, a hand to help.

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