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?

2 Comments

  1. MummyLaing

    July 1, 2013 at 8:25 pm

    I feel your pain. It’s seeming to take forever for tests to be completed on my little girl, 19 months. She already has a rare condition, diagnosed at 6 days old……as time goes on more difficulties we face. I find myself researching symptoms and possible syndromes……..and yet I lock up all my fears, worries, concerns and each day smile even though inside, my heart is breaking.

    Reply
  2. Magsy

    July 3, 2013 at 1:03 am

    Hi Obi and Bubble’s mom. I am so sorry for all you have been going through. It looks like you have your ducks lined up for researching and getting to know William Syndrome. I wonder if you are able to meet any adults who have it, as I was a counselor at a camp for folks with disabilities where there was a very sweet boy with this syndrome. While I have not kept in touch, I happened to see some of his facebook postings through a mutual friend, and it was great to see all the cool things he is doing with his life. Just a thought, and my thoughts are with you.
    Magsy

    Reply

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