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Parenting, special needs parenting, Williams Syndrome

Williams Syndrome Wednesday: I’m not special and my brain hurts

I’m tired of reading things like “God only gives special children to special parents” and “she couldn’t have come to better parents”  or best “special needs parents are the bravest/strongest/whateverest”. Pffht. My child is special. ALL children are special, but one of mine needs a little more than most. This has very little to do with the kind of person I am or am not. That being said, I am the kind of person who needs to know things. I’m a why? what next? and when? person. So it comes as no surprise that I struggle a little with the…

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Williams Syndrome Wednesday: Speed bumps

It’s amazing how everything can be going along tickety-boo, just racing along  – then wham, you hit something and everything seems to grind to a halt. I’ve taken to calling these moments speed bumps. The term makes me feel like whatever is tripping me or Obi or life up is just a temporary thing. Right now with Obi, it’s feeding. Purées don’t really go down unless she’s sucking them off her soother. Munchies like toast sticks and mum mums are heartily stuffed into the mouth, but any attempt at actually swallowing the thoroughly mushed bits that break off a toast…

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Williams Syndrome Wednesday: A Beautiful Noise

Yesterday, I heard the most beautiful sound. Baby Obi giggled for the first time. A true laugh. Not just one sound, but a series of chuckles one after another. It was magnificent. This social milestone typically occurs between 3-4 months. Obi is 10 months next week. Some milestones are counted by corrected or adjusted age, but I’ve been told the social milestones are often in line with the actual age. Either way, this laugh has been a long time coming. Her gross and fine motor skills are just a little behind the typical kid, but her eating and social milestones…

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Lost…and found. (I’m gonna talk miscarriage so if you’re rather come back tomorrow – that’s cool)

Today is Pregnancy and Infant Loss and Remembrance Day. And, I know, nobody talks about miscarriage and babyloss. But today, I can’t help myself. If nobody talks about how a miscarriage threw their life for a loop how would anyone else know it’s ok to feel the same. If nobody talks about miscarriage, how do you know some people just keep keeping on, and that’s ok too. If nobody talks about miscarriage, how do you learn that it happens to lots and lots of women and you’re not alone. YOU’RE NOT ALONE. My first miscarriage in a word? Sad. Chest-achingly,…

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Williams Syndrome Wednesday: The Unknown

Control. Surrendered. Expectations. Unrealistic. Certainty. Uncertain. Possible. Yes. Impossible. Yes. Probable. Not likely. Likely. Not realistically. It’s the unknown that makes this journey so challenging. It’s a huge spectrum. There’s no knowing where she’ll sit on it. Though she’s caught up on many milestones, there’s no research that supports this will mean she’ll remain on that curve. She could stall at any time and find herself falling behind again. Will learning sign language help? Maybe. Will OT ward off physical delays? Perhaps a little. Will the early, consistent exposure to solids help prevent food issues? Could be. Or not. There’s…

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Seat Reveiw: Stokke Newborn Set (for Tripp Trapp)

I sound like a broken record whenever I talk about how much I love the Stokke brand. One ‘must have’ on the splurge list (in my humble opinion) is the Newborn set for the Stokke Tripp Trapp. One of the biggest challenges I found with both babes is “where can I put the baby down?” This time around we have the added complication of a 3 year old who thinks ‘gentle’ is a suggestion making our low-to-the-floor options risky choices when he’s around. I have to tell you we have used this particular item EVERY DAY since baby Obi was…

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Williams Syndrome Wednesday: Finding ‘our people’

Mommy groups filled with typical mommies caring for typical babies can feel very isolating. I’ve learned when you’re parenting a child with a developmental delay caused by a genetic issue, it’s really hard to relate. In addition to the day-to-day feeling that you can’t keep up with the conversations about what’s happening with the babies that one-by-one pass yours by, there’s the uncertain future that makes you, and others, uncomfortable. For instance, you often hear, I’m letting my baby XXX (co-sleep, have a pacifier, potty-train when ready, skip tummy time) because no one every goes to university (sleeping in their…

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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: Heart in my Throat

I did a 5k run this past weekend. I used to run a lot but after hurting my back, I’ve been on a break for about 5 years. I’m one of those few people who actually loves to run. So this summer I laced back up, knowing that running is cheaper than therapy, and a serious help in the butt reduction department. I ramped up my running 13 years ago after my father passed away. Again, using the running is cheaper than therapy approach I put one foot in front of the other for Km after Km, eventually completing a…

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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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