Tuesday, June 21, 2011

Breathe

Most of the people that read this blog are friends, family, other Williams syndrome (WS) and special needs parents, and various blog buddies. Still, I get a fair amount of traffic from Google searches. - usually about WS. One search from last week really stuck with me. Someone found my blog by typing in "williams syndrome baby sad."

When I first got Bean's WS diagnosis, my heart broke for the challenges he would face and I mourned the life that I had wanted for him. At times, I was so overwhelmed that I couldn't catch my breath.

I couldn't get enough information and I spent countless hours looking at Web sites and blogs. I connected with a group of other WS families and quickly learned about all the joys Bean has in store for me. The most important thing that was reinforced for me was that Bean is still the same amazing, joyful, charismatic - and sometimes brutally challenging - little guy that he was the day before we got the diagnosis.

The sadness quickly dissipated, the grief passed and I was filled with hope for a wonderfully magical life with my sweet dude. I realized that though he may not live the life I had hoped for him, he would live the life that is perfect for him. I realized that the diagnosis really didn't change anything and wrote about that realization here.

Don't get me wrong, we have our days. It's hard sometimes. I am a worrier and I get frustrated that we spend so much time in doctor appointments and therapy instead of playing and exploring. But, I have learned to just breathe and get through those moments. Because they do pass. Life is good and Bean such an amazing and delightful boy. I embrace and appreciate everything about him, including WS and everything that goes along with it.

So, for the parent of a newly diagnosed child, it's ok to be sad. It's normal. And know the sadness will pass. There is a wonderful support network in place. Please reach out to us. Contact the Williams Syndrome Association. They can give you a wealth of information and put you in contact with someone in your region. Contact me and I'll offer all the support I can and I will put you in touch with an amazing group of parents that have been there, done that. Your child will bring more joy to your life than you ever could have expected. Each day gets easier and each breath will get deeper.


7 comments:

  1. so glad there is support and the internet! when I see a search and the word "sad" or other descriptive words...it would give me pause...of why? I am not sad! I am excited to see who my child becomes...what they will produce in life...just like anyone that has a child...I get the newness of a diagnosis...but it is fun to see how your blog comes up with a google search and key words that describe you...I like this thought...makes me think!! smiles

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  2. It's crazy to see all the ways people get to your blog! I can definitely relate to the feelings of sadness in the beginning but there's so much to be grateful for and so much joy with these awesome kiddos!

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  3. That's where I am right now, in the sadness. We got the diagnosis for our little Molly (4, almost 5, months old) over 2 weeks ago now. This blog, as well as others, have been invaluable to me - giving me a glimpse of this new world I've been so suddenly plunged into.

    I haven't updated my blog with any WS posts, but that'll come soon. The first one's a doozy!!

    You have a lovely little family. :)

    Thank you!
    Paige

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  4. Hi, Paige -

    Thanks so much for your comment and your thoughts. It really does get easier! I would be happy to chat one-on-one if you want and if you are on Facebook, I can connect you to an amazing (private) group of parents that have been an invaluable resource for me. I hope your little one is in good health and I'm looking forward to getting to know you :)

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  5. Yes to all of the above! And thank you for your generosity!! Molly is well, but vert colicky, particular, and irritable, poor girl (poor us! :) We're having all our initial therapy assessments this week. Here we go!...

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  6. Paige, Is she being treated for reflux? Shoot me an email with your info. We can chat and I'll get you connected to other WS moms!

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  7. My great grandaughter will be 1 year old July 22nd and she weighs almost 10 pounds, they have said she has a deletion in the chromosome 7 but my grand daughter has never said the words ws. She weighed 4 pounds at birth and was 3 weeks early. She has the feeding problem and has been on a feeding tube since birth, they are now trying to introduce her to solid foods, she does not like it very much. They have her on a non dairy formula. I love your blog, hope Bean is doing well. Thanks Carol

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