Category: Family Synapse

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When Gratitude is Practiced

I started taking yoga this year and I look ridiculous. I chose yoga because, no joke, it was the cheapest excercise class I could find. It was weird and uncomfortable at first and I rolled my eyes at all the breathing we did and the nap we take at the end. And speaking of cheap, do I really need to pay someone to tell me to breathe and nap? Apparently, I do. On the inhale, move. It turns out...

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Food for Thought

Food for Thought – November 16, 2015 University to Employ, House Adutls with Autism New hires with autism could start coming on board by late next year and will be supported by clinical staff and graduate students, officials said. In addition to working on campus, those in the program will participate in life skills training and recreational activities. When she is five she’ll talk, right? But I guess more than that, there is an aspect...

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Notes from an Old Mom

We all know 40 is the new 30 and math is sometimes ridiculous and unhelpful, right? So I’m not really an old mom but I have learned a few tricks in my time with Aidan. When Aidan was little I blogged mostly for therapy and a little bit to help the world open their minds to my son. Now I think I blog to help, to connect and find those other people along the way...

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Happy Birthday

It’s PURA Syndrome’s first birthday. It seems like a strange thing to celebrate – “Hey, I know why my kid is sick!” Before Aidan’s diagnosis, as in, for the first 13 years of his life, we found things to celebrate even when we were struggling. It’s a matter of survival. I believe the Medical Mom’s eye is trained on good things. We got into our groove of living without a diagnosis for Aidan, still feeling...

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Meet Anthony – The Face of Resilience

Anthony’s story as told by his mom Elizabeth: Our baby boy, Anthony just turned 1. He just started rolling over and is trying to sit up. There was a time when he was a newborn when we didn’t know if we would ever see this. These are huge milestones for him. This is because he was diagnosed with Pura Syndrome. He has sleep apena and low muscle tone so he has a tracheostomy to help...

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Food for Thought

Food for Thought – July 13, 2015 The Disabilitini Now, I’m all for disability pride. I like to think of myself as a bit of an advocate, not just for my son but for the rights of people with disabilities in general. I want to end the stigma. I want to change the conversation. I want to bridge the gap between them and us. But also, I want a mother flipping cocktail. 5 Ways Able-Bodied People Can...

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Meeting Glennon

So I met Glennon from Momastery last week with my sister. We went to Boston to hear her speak. She was fabulous – animated, funny, passionate, honest. She said her sister is the boss of her. Me too. She said people were confused by the name of her blog. Me too. She said when she boldy started telling the truth about her life (anxiety, pain, addiction), people said me too. Me too (with different specifics). Glennon...

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This Day

I’m sitting in the most perfect New England weather. The sun is shining and there is a slight breeze. I don’t sit outside very much because I’m so easily distracted by…life. The wash is in the machine. The bills have been paid. The tough phone call to our social service agency has been made. Maybe someday I’ll write a post about how un-employable I am as a result of sporadic care for Aidan. Someday. Just...

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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...