:: waiting ::
The last four weeks have had me on pins and needles. They have been long, drawn out and full of suspense. I’ve had heart palpitations, nervous sweats and plenty of irritability to go around.
The root of this discomfort?
We’ve had Ava’s blood drawn to test for a genetic syndrome called Williams Syndrome.
And I get the results today.
They say the waiting is the hardest part, but I’m not sure that I agree with that statement. In my opinion, wandering around in the dark for four years, being told your child has one thing and then another doctor diagnosing differently is much more difficult. Up until now everything that she has been diagnosed with has been subjective; one doctor’s interpretation of behaviours, skills and cognitive function. This is different. Today’s results are based on a blood draw. It will be a definitive yes or no result today.
And now I get to tell you why I’m scared my daughter might not have Williams Syndrome.
Not what you were expecting, huh? It boils down to the Devil you know and the Devil you don’t know in situations like this. I have been searching (hungering) for answers for years. Literally. It has been years since we started this process with Ava. Knowing that she has Williams Syndrome will give me closure. Finally, I can stop. I can rest. We know what our plan is now and how to get services for Ava because finally we have a name for this.
The Devil I don’t know would be more doctors, more tests, more books, more phone calls, more unknown. It would mean that perhaps this is a different genetic syndrome that isn’t isolated to Ava. Perhaps it’s a genetic syndrome that all of my children have. Maybe this means I will never have grandchildren. Does this mean that I’m responsible? I have faulty genes? The uncertainty can cloud your judgement and make it hard to see your children as anything but symptoms and ‘distinctive features’. I just want to enjoy them.
Today at 11:30 I’m going to get some answers. Either it will be the answer I have been looking for, or it won’t. Either way, it’s going to be a long day, I think.