William’s Syndrome

27 Jun
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Our Sweet Molly

It was three weeks ago that our sweet little Molly girl was diagnosed with a rare genetic disorder called Williams Syndrome. You never hear of something all your life, and then suddenly it permeates every aspect of your existence.

This post is a difficult one to write – so many emotions, so many things have happened. I’m mentally and emotionally exhausted and overwhelmed. The shock is coupled with the reality. Sometimes we’re dealing with it all, and sometimes we’re not because you just can’t experience that immense weight all the time. I don’t think we can even fully understand what this means for us – good and bad alike.

In many ways I need to write this just to sort it all out in my own head – sort out the last 14 months. Replay what happened, how we came to this point. It all feels sort of like a dream – becoming pregnant, the excitement and joy, the stressful pregnancy (Read: here and here), the arrival of our lovely Molly, the NICU stay, the joy and love, the worry that something wasn’t quite right, and finally the diagnosis. And here we are – wondering what it all means; what’s to come.

I’m also writing to keep friends and families updated and in the know, to give them a glimpse of the life, and maybe to offer some understanding.

And last, I hope this blog will serve as a resource for other families who will one day receive this same diagnosis. Or for any family with a special needs child. I know that reading other blogs from people in the same situation has helped me immensely.

I will also keep posting about the everyday and what we’re all up to as a family because life certainly – even happily – continues on.

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Love my Lovely Family!!!

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2 Responses to “William’s Syndrome”

  1. Mama to Baby J and Bean June 28, 2011 at 5:53 am #

    First, let me say that she is beautiful! I’m sure it was a relief to get some of this out in writing. I have found blogging to be immensely helpful after getting our diagnosis. I know it must feel like you are struggling to tread water right now but it will get better and you will find your way. The WS community is an amazingly robust and supportive community and we are here for you when you are ready! Much love and support!

  2. Paige July 1, 2011 at 3:42 pm #

    Thank you again and again!! I sent you a wordy, discombobulated email. :)

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