Parenting, special needs parenting, That's Life, Williams Syndrome

Williams Syndrome Wednesday: Genes or Just Because?

So there’s this problem we’re having. It’s kind of like when a baby isn’t sleeping through the night… except that by ‘not sleeping through the night’ I mean “baby won’t close her eyes for any reason, like not even to blink between 11pm and 2,3,4,5 am”. The time on the clock is variable but the effect is the same. We live in a zombie like state. We’re 4 weeks from one year of not getting any freakin’ sleep.

We have devised a system whereby one parent stays on the main floor with baby and weathers the sleepless storm of tears, kicking, fussing and blood curdling screams and the other sleeps upstairs in the bed…the sweet, sweet bed.

There are many things wrong with this system, I know. But we were barely surviving and this was the best we could come up with.

The question is whether the sleeplessness comes from her WS or from a series of bad sleep habits that she’s picked up along the way. And I suppose, in addition to that…does it matter?

I know a lot of kids with WS have sleep issue, but then, many kids without do to.

I spoke to my Doc and she suggested abolishing the bad sleep habits first, then see where we’re at.

Huh. Never thought of that. (of course I felt kind of dumb on the phone…)

I fear I’ll spend a great deal of my parenting career with her trying determine where something is the syndrome or just a typical kid thing. It’s hard not to blame WS for everything. I’m still a little mad at it.

So I’m gonna make a conscious effort to see Obi first and the syndrome second. To embrace the ‘just because’ before the genetics. Sure, for true medical issues I will remain super vigilant. But for the rest, for the quirks and questions, I want to parent ‘who my child is’, not ‘what she has’.

I suspect there will be many times when the line is a little fuzzy but really, after not sleeping for a year, everything is fuzzy.