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gentic testing

Parenting, special needs parenting, Williams Syndrome

Williams Syndrome Wednesday: Alikes

Have you given thought to the change in how the people see ability? When I was growing up, people who had differences, physical and developmental were kept away. They went through school in different classes. They weren’t playing sports at the same venues or in the same dance classes I took. Every one who was with me was like me, and everyone who was not like me was somewhere else. This magnified the all the ways we were different. When I learned about Obi’s condition and every day since I’ve fretted about all the ways she’ll be different. From her…

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Williams Syndrome Wednesday: Some things about having a baby with a rare genentic syndrome…

…that you maybe haven’t given much thought about. This past week we had the 1 year anniversary of Obi’s homecoming after 25 days in the NICU. We had no idea the journey that lay ahead. Realizing that Obi was not coming along like a typical baby, identifying possible causes and bringing them to her doc’s attention, wading through genetic testing, learning her diagnosis and diving into the steep learning that comes with a complex syndrome like Williams – what a year! I was inspired by this post today on Cheering on Charlie to share some of the thoughts and experiences…

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Williams Syndrome Wednesday: Well I’m still at the airport

mommydo still at the airport-featured

Last we I mentioned briefly that I have some thoughts on “Welcome to Holland“. Dana Nieder (uncommonfeedback@gmail.com), over at Uncommon Sense talks about it too, in her post Amsterdam International.  Well that’s all well and good, but from someone who is still at the airport, here are my 10 thoughts. I reserve the right to feel differently about this as time passes. 1. I have been to Amsterdam International. As a hub, people leave there all the time to head to other places. It’s a kick ass airport. Schiphol. I won some money in the casino there. I have fond…

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special needs parenting, Williams Syndrome, williams syndrome wednesday

Williams Syndrome Wednesday: Related

Obi is not sleeping well. At least not at night. seems to be related to digestion…or maybe teeth. If it is digestion, I’ve read some WS kids have worsening digestive symptoms at 6 months, so could be WS related. Or, could be typical baby stuff. Who knows? I do know I look at every little thing and wonder if it part of the WS or part of life. EVERY little thing. I’m exhausted already. I hope this part gets easier. melanie

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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…

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Williams Syndrome Pity Party – Table for 1 in 20,000

Sometimes you just need to let your heart be broken for a bit, before you can starting putting it back together again. We’ve heard from genetics as I mentioned in my last post. My sweet, perfect tiny baby girl was just that. And when I was talking to the doc, just before he gave me the news, I looked over at her and thought, I need to remember this moment, because right now, you’re not a patient or a diagnosis. You don’t have a label. You’re just my perfect little baby. You have challenges and good days and bad days…

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I dreamed a dream in times gone by

I dreamed a dream Williams Syndrome

When you learn you’re having a baby girl, regardless of the misgiving you have about the day-to-day ups and downs in the pregnancy, your mind wanders to what the future might be like if it all works out. You get to have a baby girl, a daughter. You get to have tea parties and dance classes. You get to help pick out prom dresses and wedding dresses. You imagine grand babies. You have a dream for her, and for you and her. You have a dream for yourself as a mother and a mentor and a friend. You have a…

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Genetic Testing – A needle in a hay stack

When you set the ball in motion to look to genetics for answers, you learn the answers you seek are like finding a needle in a hay stack. I posted about our meeting with genetics here. We knew they had suspicions as I mentioned in the post I linked to, and I started to live as though their suspicions were true. Still I waited for the follow up with bated breath. I am one of those people who needs to know once and for all. melanie

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