To the Newly Diagnosed

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A couple people whose newborn babies were just diagnosed with Williams syndrome contacted me over the past few days. They found my blog and were comforted by the cute pictures and stories about Emmy, who has brought such incredible joy to our lives.

When you first find out that your newborn baby has any kind of syndrome, it can be a devastating time. You were expecting the experience that you so carefully planned out in your mind (What to Expect When You’re Expecting, anyone?? That book certainly doesn’t talk about Williams syndrome!). And then you find out that the little person you just gave birth to had a secret when he/she was in your belly–and you had no idea. You Google the syndrome and find information that frightens you. There may be serious medical complications, and there will surely be learning disabilities. How could this little baby that you don’t even know yet come with a laundry list of possible problems? It’s the biggest shock of your life, and you’re not even sure where to begin.

And here is where the wedge comes in. A barrier sinks down in between you and your baby, and it’s completely out of your control. You want so badly to lift that barrier. You want to stop the rush of feelings that come at you every day (sadness, guilt, anger, confusion). You want SO BADLY to accept this baby. You want to just “get over” what you’re feeling. What can’t I stop thinking about this syndrome? And then you wonder…When will it get better? When will I stop feeling like an awful person and begin to embrace this diagnosis and accept my own child?

I think we’re expecting a lot from ourselves. We had a certain vision in our mind. That vision was completely turned upside down, and we expect ourselves to just “get over it.” There’s actually a grieving process that needs to happen. You need to grieve the loss of your original vision–the perfect plan that you had in your head. You need to allow yourself to feel every single feeling that comes your way–without passing judgment on yourself.

And then, with time, that barrier will start to lift. You feel yourself getting drawn into your child. You stop thinking about Williams syndrome as much. You start to really fall in love with who your child is becoming. Those old visions that you once had are now replaced by new visions and plans. You get excited at your child’s potential. You see your child blossom into a sweet, loving person, and you can’t believe your luck. You were given this incredible child. You were given this opportunity to stand side-by-side with your child and watch him or her do amazing things. You were brought into a special world that not everyone gets to see.

For me, it was Emmy’s personality that changed everything. Early on, I read that people with Williams syndrome have “a very endearing personality.” They have big smiles and are overly friendly. I clung to those words as if they were my life raft. Everything else I read seemed scary. But “endearing personality” and “friendly” were music to my ears. Please let this be true, I thought.

And then Emmy cried and screamed for 6 long months, and I thought “Well, I guess this isn’t going to be true in our case! There goes that life raft!”

And then came the big smile that turned my world upside down. HOW I LOVE THAT SMILE!!! That was a Williams syndrome smile, and it was big and beautiful and bright. It was a glimpse into her personality.

The next thing to emerge was the friendliness. We’d be sitting at a restaurant chatting away, and then someone at a nearby table would squeal with delight. I’d look over, and a woman would be waving to Emmy and saying to a friend, “She’s so cute!!” I’d look at Emmy, who was happily waving back and grinning.

The thing is that she knows she’s cute. She knows exactly how to draw you in. First it’s the smile, then it’s the narrowing of her eyes and the tilt of her head, and now it’s followed by a phrase. She might say, “Hi. How you doing?” or she’ll call out, “Hi, kids!” or she’ll even blow you a kiss. I mean, she KNOWS what she’s doing, folks. She KNOWS that smile is pure gold.

The other day we had an evaluation at a school with teachers that are unfamiliar to her. In no time, she was putting on a show of “Twinkle Twinkle Little Star,” complete with smiles and hand movements. Anyone watching can’t help but say, “AWWWWW!”

She’s also very funny. If you ask her an obvious question (like “Is that a shoe?”), she’ll give you an exaggerated but joking “Noooooooo.” And then when you respond, “No? Are you sure??” She’ll say “Nooooooo” again, just to get you to laugh. She knows it’s a shoe, but she’s pulling your leg.

And she loves to chase her sister around the house while saying nonsense words like “Beebee beebee beebee.” Charlotte will run away from her laughing until, finally, both girls collapse in a giggling heap on the floor. It’s so much fun to watch.

So to the newly diagnosed I say: Wait.

It will take time to get to this point. And, in my experience, the first year is the hardest. So let yourself feel all of those feelings. Don’t pass judgement on yourself. Just really feel it. Get mad. Scream. Be upset. Say, “It isn’t fair!!”

And then, as the days, weeks, and months pass, things will change within you. You will connect with your child. You will fall in love with your child. You’ll be bragging about how wonderful he is. You’ll be glowing, fresh from the thrill of something new that she has done. And, even though you didn’t sign up to travel this road, it will feel as if this was meant to be–all along.

34 thoughts on “To the Newly Diagnosed

  1. Awesome! I love the part about having a secrect in your belly….so true!
    I love your experiences and how you tell your story as they are so very similar to my own.

  2. We are about 6 months past our daughter’s WS diagnosis and finding your blog those first few days helped me cope and to realize that her future isn’t written yet. Our daughter is 10 months old now and her smile can light up a room. Even at this young age, she gives the best hugs and kisses. Thank you for continuing to write…I love to read how your girls are growing!

  3. Thank you so much for taking the time to post this. It was such a true depiction of what my first year has been like. So happy we met!

  4. Wauw! Thank you for this post. Mattia is 15 months old now and we only know for about one year that he has Williams Syndrome. I feel now, day by day, that I can see through the Williams Syndrome and look at HIM.
    Love your blog!

  5. Speechless !!
    This article hits right on the walls of my heart .
    Yes , I’ve been there !! and right now I am in the ” falling in love ” phase .
    Thank you 😊

  6. What a powerful, honest & soooo acuraye account! I have twins with Williams sundrome (now 3 although look & act about 12-18 m) & it was like reading my own diary! Really really great. Thank you x

    • Thanks Jess! It’s reassuring to see that so many other people felt the same way that I did (and do now). Wow — twins!! I bet you’re impressed with everything you’ve been able to handle over the past 3 years. I didn’t realize my own strength until I had to face these unexpected challenges with Emmy. Thanks for commenting! 🙂
      Vanessa

  7. Thank you, this could not have come at a better time. My son is just 6 weeks old and was diagnosed a few weeks ago. We love him enormously bit you’ve beautifully captured all the emotions were going through. Thank you, it’s very reassuring. Your girls are beautiful and I will definitely be following blog. All the best.

    • I’m so glad you found my blog! Welcome! I’m glad that I accurately described the emotions that other people were/are feeling. I promise that it gets easier. The first year was definitely the hardest for me. When Emmy was first diagnosed, my good friend said that this would be come our “new normal.” I couldn’t imagine that to be true because I was still reeling from the shock. But, sure enough, it’s become our new normal. Wishing you much happiness on the road ahead!
      Vanessa

  8. Thank you for this… You couldn’t have said it better. It’s been 8 months since we received Violets diagnosis and it’s so true- those feelings eventually do lift and you start to embrace all the positive. WS has a scary side, but also a beautiful side and we’re starting to see more of its beauty. I look forward to your future posts 🙂

    Heidi

    • We have a little Violet with WS too! Our little girl is now 15 weeks and yesterday really learnt to smile and what a smile it was – it just lit up her face and even her eyes were showing the smile.

      Vanessa – thank you for your blog. It was one of the first things I found on WS after the diagnosis and I now frequently direct people to it to help them understand our daughter and what we are experiencing as a family. Please keep the posts up!

  9. I read this just now. Beautiful way of approaching life.i have 11 year old buy with symptons like hypotonia, hernia, low iq, extremely friemdly..but v hav never done a test as v did not want to dig further. Thank you for getting positive feeling

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