Category: Family Synapse

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Meet Audrey: The Face of Light

There has been a lot going on in Aidan’s genetic world. First, we’ve met eleven other families with the same diagnosis. Second, we’ve managed to gain the attention of several researchers. Third, and this part may be my favorite, some of us PURa moms are getting together in a few weeks to meet each other in real life. I can’t wait to tell you more. For now, go like our Friends of PURa Syndrome Facebook...

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Tall Tales and Tank Tops

Every now and again we play Caption This on my Facebook page which you should totally go like so you can play too.  First place for telling the truth goes to Jenni: I was almost eaten by a gator and his mouth was this big! First place for excellent tie-in to my blog goes to Kristen: I am a synapse. A synapse is who I am! First place for making me sounds smart goes to...

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Don’t Call My Son Cute

Aidan is cute. He’s adorable, really. Those beautiful blue eyes make everyone stop and take notice. And he still has soft kissable cheeks. His size is misleading. I get that. He looks like a nine year old and nine year olds can be cute. But not teenagers. Aidan is 14 now, a tween, a teen? I’m not even sure anymore, but not a little boy. Let me make all kinds of rules and immediately break...

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My First Stitch Fix

So yesterday we established that I’m a fashion disaster and that Tiff and Sharon dress me which is a problem because they live in Texas and I live in Maine. I also hate shopping. Nothing ever fits and I have exactly zero patience. Enter Stitch Fix. Because of course the internet invented personal stylists that you can access anytime. Here’s how it works. You sign up and give them all kinds of information about yourself...

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Meet Tiff and Sharon

Tiff and Sharon. They are my people. I met them over twenty years ago at summer camp. They came to Connecticut from Texas, prepared with trunks full of clothing and assorted accessories, like good southerners. Though I learned from them that Texas is not the South, it’s just Texas. I don’t know. I can’t even. Just go with it. We forged strong friendships at camp that have lasted a lifetime. Sharon went on to become...

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15 Pounds of Victory

This will not become a food blog, I promise, for many reasons. However, it’s a community, and in this community I know I’m not alone in trying to get my kid to gain weight. Aidan was declared to be a baby who Failed to Thrive because he couldn’t gain weight. For years. Forget about the growth chart, he wasn’t even on his own curve. This was a big emotional deal for me but that’s not...

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Welcome to My New Home

Welcome the space formerly known as Team Aidan. I miss his big blue eyes on the page, except that I don’t have to because I get to look at them everyday, but there’s so much here I’m excited to show you. First, most susbcribers of Team Aidan should be receiving these Family Synapse posts in your email as before. We had some technical difficulty with some so if you are not here by way of...

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The Power of Connection

synapse |ˈsinˌaps| noun – a junction between two nerve cells, consisting of a minute gap across which impulses pass by diffusion of a neurotransmitter. ORIGIN late 19th cent.: from Greek sunapsis, from sun- ‘together’ + hapsis ‘joining I might be a bit of a brain nerd. The more I come to understand Aidan’s disability, the more I respect the brain and am awed by its power. Though it’s been the source of Aidan’s greatest struggles, it’s also displayed it’s complexity through his delayed development. I’ve been privileged to see it’s work in slow motion....

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The Truth About Birthdays

Birthdays are milestones, days to take stock, notice, celebrate. They gives us a concrete number to mark time. At five years old we start school; hitting double digits make a kid feel grown up; turning 13 starts the tumultuous teenage years; 16 means you can start driving. We collectively have an idea of what happens when. The truth is, birthdays get harder as the gap between Aidan and his peers becomes more noticeable. Garreth and I...

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Food for Thought

Food for Thought March 16, 2015 Edition Reflections on Drool  One thing that  I  would like  people to do  when  I drool  is to  be  patient, and understanding and try not to judge.   Don’t  pity me or assume that I  do not understand things because   I  am  very smart.  I  just happen to drool. Robert Downey Jr Delivers a Real Bionic Arm  Strangers Used Sign Language to Make His Day Easier Oh my,...