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

Williams Syndrome Wednesday: I want to be…

A few weekends ago I attended the national conference for Williams Syndrome and they had a talent show for the individuals with WS one night. There were all kinds of acts, stand up comedy, a family of 3 young children that wrote and performed a song about the loving nature of the WS kid of the family, some “just stand up and sing” acts. All in all, there were some impressive numbers – these kids were real crowd pleasers – but one in particular stood out to me. A young boy, maybe 5 or 6, stood up and sang “I…

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Williams Syndrome Wednesday: Bifocal

Bifocal Williams Syndrome Wednesday

I’m struggling a little. I feel challenged by the need to be present in the moment and simply love and care for wee Obi and the need to learn and understand and be prepared for any and all possibilities for the future. I need bifocal glasses. Today, for instance, I dropped off a cheque for the 0-2 infant development nursery school program we’re starting in September (one morning a week/parent and child/typical and special needs kids/developmental program including sensory play/various therapists participate throughout the year to assess and determine areas where further intervention may be beneficial/finally meeting other special needs…

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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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Nursery story Part 1: Shame on me

nursery before picture

This is one of those moments where you do something totally embarrassing to try and use the moment to shame yourself into finishing something. As you are aware, baby girl made her early appearance in late Dec of 2012. As she wasn’t due till the end of January, I figured we had all of that month to complete her room. Yeah, that was a super bad idea. So then she came along and everything baby – all the hand me downs and rescued from the garage items, and pulled out of various storage items and anything else that was hanging…

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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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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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In her own time

When you have a preemie, the one thing you hear a lot is “in her own time.” As in “she’ll start nursing in her own time.”, or “she’ll smile in her own time”, or “she’ll make I contact in her own time”, or “she’ll have alert periods in her own time”…you see where this is going. Obi wasn’t acting like a ‘typical’ newborn. She was slow to gain weight, could latch to nurse, but couldn’t transfer enough milk to make a meal. You had to wake her up to feed her at term, 2 weeks past term, two months past…

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In My Gut – Something wasn’t right with my preemie

preemie in NICU

All through my pregnancy with Obi (dubbed Obi because she was the result of a single remaining embryo from an IVF cycle, and that embryo at the time, made me think of Princess Leia’s plea to Kenobi in holograph form in Star Wars – “Help me Obi Wan Kenobi, you’re my only hope.”) I had a gut feeling something wasn’t right. At every turn there were people telling me it was ‘just this’ or ‘just that’ but the pregnancy just wasn’t the same as the 39 weeks I spent brewing my boy. She arrived at 34 weeks 4 days, remarkably…

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