Williams Syndrome Wednesday – Hanging in there
As in, we’re hanging in there. Because really, what else can you say?
When you’ve just received news that your perfect little princess is, in fact, not perfect after all, that she’s got a genetic anomaly that affects a whole slew of major systems in the body, that the future you’ve imagined is not to be, that it brings real honest-to-goodness health concerns, social stigma, endless appointments and a healthy dose of uncertainty about the future, what the F else are you supposed to say? That you sit in your parked car and weep? That you wake up in the morning and just for a minute before you really come to you forget and then you remember and your heart breaks for her and for you all over again? That you have no f-ing idea if you can handle it?
You can’t say that. It means you have doubts about your ability to parent. It means you admit to others that you’re not certain everything will be ok. It means that you put the diagnosis before your still-perfect-to-you-daughter, It means you’re weak. And you can’t be weak. You need to be strong and then stronger still – for your baby girl and your family and your husband and even more strong for your self.
If you’re not strong you might find the diagnosis takes over. And you can’t let that happen. Because you know if it does you’ll lose your little girl to labels, you’ll lose your marriage to uncertainty and you’ll lose yourself to your new advocate role.
So you need to hang in there. I’m hanging in there. What choice do I have?