Tag

diagnosis

Parenting, special needs parenting, Williams Syndrome

Williams Syndrome Wednesday: The Who does What’s?

I have been meaning to write a post about steps to take when you first learn about a new diagnosis. I’ve been wading through these deep waters and feel rather hung-out-to-dry when it comes to finding the info you need start helping your little person access the services they need. That’s a long sentence, but not nearly as long as the roundabout route one seems to take when trying to find info about these things. Today for example, I got a call from one place that offers a certain program telling me that going to a paid program at their…

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Williams Syndrome Wednesday (Friday Edition): Running Between the Raindrops

Sometimes, when I get asked too many questions or read too many Williams Syndrome sites online, I start feeling overwhelmed by all the ‘what if’s’ and ‘could have’s’ and the unknown. What lies ahead feels like ‘too much’ when confronted with all the possible things that could be an issue as time passes. I find, at these times, I cope by trying to focus on one little baby thing that Obi is doing that seems like a regular baby thing. I listen to a gurgle. I coax a smile. I watch her pass a toy. I try to forget how…

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Williams Syndrome Wednesday: Missing Milestones is Messy

missing milestones Williams Syndrome Wednesday

Missing milestones is a messy business. Obi is behind. This certainly comes as no surprise. She’s a preemie. She has Williams Syndrome. She’s been doing it from the start. Or not doing it, I suppose – whatever ‘it’ is on any given day. But each new milestone not met is another little stab to the heart. I have a few different groups of Mom’s that are part of my regular social circle. Most of their babies were born in and around the same time as mine – or around when she was due, anyway. Some have newer babies. And one…

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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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Parenting, preemie, special needs parenting, Williams Syndrome, williams syndrome wednesday

Williams Syndrome Wednesday: Not all news is bad news

Williams Syndrome baby no heart issues

A little update on the little miss. Obi met with cardiology today and she doesn’t have any of the heart trouble often associated with Williams Syndrome. This is outstanding, especially when you consider that heart issues are generally a defining factor in the disorder. I, of course, hope that the lack of cardio involvement will translate to a less severe manifestation of the syndrome but I know the two are not related. Still, a little sunny news goes a long way these days. It’s amazing. When you suddenly find yourself in uncharted territory, the way you see and process the…

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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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So tired

So tired - one weekend after Williams Syndrome diagnosis

Having your life turned upside down by a life-altering diagnosis makes you tired. It’s exhausting. For one, your brain doesn’t turn off so like a car left with the motor running, your gas tank gets to empty pretty quick. Second, you feel like to need to be doing SOMETHING, so you flit around tidying a little here, doing a little laundry over there, reading a little more on one site, posting a little on another. Then there are all the things you were doing before you were doing this… planning, pushing, advocating. I don’t know how people do it. And I am…

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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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