More Vocabulary

I am still thinking about words. Anonymous wrote a comment that I deeply appreciated about the proper usage of Ds vocabulary. I realized that I always thought “Ds” meant “Downs” not “Down syndrome.” My eyes saw one thing and that’s what I thought it was. The comment further discussed how the usage of defining a person with Ds should be just that, a person with Down syndrome, rather than a Down syndrome person.

In the Costello community the opposite has been offered. That defining a person as having Costello syndrome, rather than a “Costello person” makes them sound as if they have a sickness when the syndrome is just the person, a defining identity trait. That saying, “Costello person” makes the syndrome and the person the same, while Anonymous pointed out that they preferred “person with Ds,” to put the person first.

Why does this all matter so much? Why so much discussion about whether to put the syndrome before or after the word person?

I find myself of two minds. Perhaps even more. It matters because words are balled fists. They land punches. But also, in the energy given over to the defining, the categorizing, the making acceptable what is ultimately not are we losing focus? Is vision blurred so you see, for example, Costello Person and not Willa?

I guess the problem is I see both. I think we probably all do. You see your child, their individuality, their themness. But you always see that other too. The features shaped and guided by their syndrome, the traits they are predisposed to.

And aren’t they both? This and that. One and the other.

It matters and it doesn’t matter. I suppose most importantly because we live in a greater world of eyes; of people who do not see the same things as us. They see the syndrome. We see our kid. They call names. We say their names. Are we trying to construct a house of words that will protect them when they are out in the world? Because when they are in our arms do we really care what the hell difference it makes whether it’s Costello Person or person with Costello Syndrome?

I think we are trying to pave something for them. With this focus on terms and usage we are trying to tell other people how to think of them. We are desperately trying to pull back the veil so they can see, all in that one moment when they encounter our family. But it will always fail. Because by the very nature of having to do any of this we are only drawing the difference more boldly. We are darkening the line. We are, in the end, not fooling anyone.

And here my other mind has its say. It still matters. We still try. We must. We are parents to these children and we cannot help ourselves. We want, like all parents do, to make our children’s lives better, easier, happier. It’s harder for our kids and for us and so we battle with these words. We write and rewrite our rules. We push language around so much with our tongue we can always taste the flavor of it. Sometimes bitter, often sweet, always there.

Before There Were Three

Before there were three, there were two. A very happy two. A two that did everything together, as if all errands, all decisions all challenges were made with legs tied together, a constant three-legged race. The material that bound us would change. Sometimes it was rope, sometimes slick ribbon, sometimes the thinnest of cord. But it was always there. If you took it off, the legs bore the imprint, felt the sting of its removal. So even when unbound, the memory of the binding remained.

When I was rushed into the operating room for Willa’s emergency c-section my husband was not allowed to be with me. We felt the fibers stretch. When she was taken to another hospital at two weeks old we walked so close to one another we shared steps. When we were told she had Costello Syndrome the binding came all out of order. It shifted from the ankle to the knee, to mid-calf and then up at our throats, choking us both.

I have learned that when you have a sick child all binds can break between husband and wife, now father and mother. That which may have held in your past no longer applies to these new feats of strength. Your string may not be able to hold. Or, you would now be bound more tightly than ever imagined. That new threads would grow from this new root. That new knots would develop and fiercely protect your connection.

The only other thing that scared me about Willa’s diagnosis was that I might lose my husband. That in the shocking newness of what was terrible news we would not survive the earthquake. That mountains would be thrown up between us, that the mail would not get through, that we would begin to live under different stars.

We pulled at the binding, I heard it snap and lurch and creak with the weight of such unexpected sadness. But then I felt it pull us back together. We began to again walk step in step, though with new feet. We tie ourselves with a bow now, easy to undo should the strain prove too much, but it doesn’t break anything and when we have recovered we tie it up again, prettily. A gift of ourselves to ourselves and each other.

Before there were three there were a very happy two but now we are all one.