The end and the beginning

In the last month, I have had to come to terms with the reality of Julianna’s Down Syndrome.

There is an initial grieving when you learn that your child has a disability. For some people it goes on forever. We were blessed—it was over in a few days. Then for a while, life goes on as normally as it can. A baby, after all, is a baby, and a child with DS, aside from heart conditions and so forth, isn’t different from any other baby.

But eventually the delays begin to show. For a while, you don’t notice, because your baby is your baby. Then you notice, but you think, ah, it’s only a little. Then come the niggling thoughts at inconvenient moments, like the middle of the night, or while you’re making dinner: Wasn’t Alex (fill in the blank) by (fill in the blank)? Well, you think, she is going to be delayed, after all, and holy cow, look at the way she works the room! Look at her sitting up!

Until, sometime around ten months, you think, she’s not putting anything in her mouth. I mean, nothing. You say, wait a minute, she’s getting close to a year and she’s not self-feeding. We’re still nursing five times a day because she can’t eat finger food. So you ask the occupational therapist, and the OT says, hmmmmmm….well, you know, I’m kind of stumped. I think you’re just going to have to wait till she’s ready.

You begin the process of switching OTs, because waiting just isn’t an option. She’s doing too well in other areas.

But even so, she’s eleven months old tomorrow, and she’s sitting up, but not transitioning in and out of sitting; she has to be helped into all-fours; she’s not pulling up and she only stands with a great deal of support on her butt.

So now the secondary grieving begins. This grief is not so all-consuming, so stormy, as the initial spat. This one goes much deeper. It lasts for months, accompanied by uncertainty and worry and fear. This grief is the grief of having to take an ugly, objective word like “retarded” and use it when describing your child. I still can’t do it. I have to say she’s “delayed.” My entire being cringes when I even think the other.

This was 2007.

Julianna is joy, and I rise up in blazing, righteous fury when I hear of people who choose to “terminate” their babies’ lives because of DS. (“Terminate,” as if ending a child’s life is no more consequential than firing a person.) And yet I also have to be honest and say that I have never in my life been so glad to see a calendar year pass into history.

For 2008, I’ll be satisfied if we can just stay out of the hospital.