At four years and almost eleven months, she has finally entrenched herself firmly in the imaginative play stage. She loves dolls, and she doesn’t always connect the difference between cloth-and-plastic baby and real baby. It’s half-electrifying, half-terrifying, that his hands flap around and tap her face when she holds him. And she can’t seem to understand that she can’t drag him around by one arm or pick him up by the neck, the way she does her dolly.
She’s fascinated by nursing. “Baby–eat,” she signs, every time we sit down, and I have to remind her to use her words. “Buh buh,” she repeats dutifully. “Eh.” (We have a ways to go on speech, but she’s trying!)
So it is that after dinner on the Tuesday before Christmas, the first dinner in which I brought the Boppy to the table (although he didn’t actually nurse), I get up to start washing dishes and my husband says, “Kate, look at her!” I turn around and find Julianna sitting in my chair at the end of the table, with the boppy around her waist, grunting and reaching her arms out to have the baby put on her lap.
Christian and I chuckle. And then my mind races ahead a decade, two decades. “Oh, I hope she never has reason to nurse a baby,” I murmur. Christian hmmmm‘s his agreement, and Alex frowns. “Why?” he says.
“Never mind,” Christian says hastily.
I struggle mightily all the time to reconcile my own beliefs about sexuality–openness to life, the holiness of children, respecting the woman’s body as it was created and not imposing artificial infertility upon it in the name of convenience–with my wishes for Julianna. It’s very uncomfortable to see the conflict between my beliefs in general and my complete unwillingness to apply them to my daughter’s life.
Culturally speaking, birth control is absolutely a given for girls with Down syndrome. The nature of her chromosomes makes it a 50-50 shot that any child she bears will also have Down’s. And I don’t think she could raise a child, with or without Down’s. I know that any child my daughter bears will ultimately be my responsibility. And I don’t want to raise grandkids, with or without special needs–but especially, I don’t want to start down this road again at the age of fifty.
It seems sad, wrong somehow, to want to deny my daughter the fulfillment of womanhood. How can I, in conscience, willfully deny her what I spent years longing for myself, what has brought me so much fulfillment and joy?
Yet my greatest fear is that Julianna will be taken advantage of–in high school, in independent adulthood. She is beautiful, and she is vulnerable. I love that she’s beautiful, even by cultural standards, because it facilitates her ability to be an ambassador for special needs. But it also terrifies me. How can I equip her for adolescence, for the normal desires that she, even more than the rest of her peers, needs not to indulge? How can I protect her from being taken advantage of because of her beauty and her vulnerability? I want her to be independent, to have autonomy and the gift of independent living. But the more independent she is, the greater the risk.
Maybe I underestimate her. Maybe her very chromosomal giftedness will connect her more closely to God, render her impervious to what I fear. And maybe she’s perfectly capable of mothering a child.
I know for sure I’m borrowing trouble; for Heaven’s sake, she’s not even in kindergarten yet. But these are the things a parent of a child with special needs worries about. And I share it as one more slice of that life: the beautiful and the difficult.