When You Are Raising A Daughter With Special Needs (or: Borrowing Trouble)

It must have been the convergence of James Bond with a bedtime call from my sister, announcing the birth of her first baby, a girl. Maybe it was superimposing the image of her baby upon my own baby girl, no longer a baby, upon the image of the Bond girl, once victim of the sex trade and now caught in a supposedly even scarier net.

I don’t know what caused it. All I know is that I laid awake that night for an hour, two, three, tossing and turning, my insides churning.

When you’re raising a girl with special needs–especially one as beautiful as Julianna–certain subjects are bound to be especially worrisome. When Julianna was a baby, we attended the National Down Syndrome Congress convention, and for some reason I landed in a session on sexuality. It was taken for granted that you’d put your chromosomally-gifted child of a certain age on birth control, just for precaution. It was the first time it had occurred to me that what is already a high-stakes area in any family (particularly one with both philosophical and religious objections to manipulating the reproductive system), is even more fraught with terror in my own parenting journey.

The first time, but not the last.

I want Julianna to move out on her own, be independent, make her own decisions. But let’s be frank. The idea of raising my chromosomally gifted daughter’s chromosomally gifted child is enough to make me understand why so many parents keep their kids close under their wing into their twilight years. The fear of Julianna being taken advantage of, or simply having her feelings run away with her, strikes terror deep into my heart. Call me selfish, but I want my kids out of the house; I want the freedom and coupledom that is the heart of the empty nest experience. I have no interest in raising my grandchildren, and particularly not in starting this whole process over again–therapies, IEPs, and high maintenance everything–at the age of fifty or fifty-five.

Of course, there’s only a 50% chance that a child of Julianna’s would have the extra chromosome. That opens up another whole line of thinking. Imagine raising a child who’s bound to discover at some point, probably just about the time she hits adolescent rebellion, that she knows more and can do more than her mother.

This entire line of thinking is called Borrowing Trouble, and it’s beyond nonproductive. I’m well aware of that. It’s not like I live my life in terror over these issues. But it would be beyond foolhardy to take a Scarlett O’Hara approach to this and think, “I’ll think about that some other day.” If there is a safe path through these perilous waters, it comes by laying foundations so solid, so wide and deep, that nothing can shake what sits on top. Foundations are built now: today, tomorrow and the next day, amid lost teeth and learning to write her name. Waiting until Julianna is ten or eleven to be thinking about it isn’t an option.