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Category: Family Synapse

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Undiagnosed Children’s Day 2013

Aidan is my giggly 12 year old non-verbal son who uses a power chair like a nobody’s business. I had a normal pregnancy, labor and delivery with him and yet he was born with an undiagnosed disability. I know what you’re thinking: we spent three months in the hospital when he was born with many excellent doctors looking closely and running numerous tests. They must have found SOMETHING. Perhaps we didn’t try hard enough. Nope....

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From the Rooftop

This is a post about Liam, Aidan’s neuro-typical (NT) brother, my first born, the child that made me a mom. Here’s what it’s supposed to say: I’ve always been very conscious that Liam’s life is different; disability effects the entire family. I’ve done my best to give him a full and wonderful life. I signed him up for soccer and baseball and tried to cultivate peer friendships. I make sure we have time together when he...

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Sibling-Palooza

Disability effects the entire family. No one goes to Holland alone. Anytime I speak publicly about our journey, I’m asked about Liam and how he handles having a brother with a disability. Yes his life is different, but it’s the only life he knows. Liam has one brother. He does not have any experience with the “typical” sibling relationship. I like to think that Liam will be a kinder, more open minded, thoughtful adult because...

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Bloggers on Your Marks…

Get set… I believe in the power of story. I believe that change happens when our circumstances become personal and meaningful to others. It’s when you know someone who uses a wheelchair that you are compelled to set up a lemonade stand to buy wheelchairs for kids in developing countries. I believe that stories connect us and help us feel less alone. That moment you read someone’s story and say, ‘Yes, I get it” brings you...

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Soooooo/But

I love Beth Woosley’s BOTH/AND posts, which she mostly does on FaceBook and she invites everyone to chime in so you should totally join her there. They show that life is so very much more than one thing; it’s messy and wonderful and hard and fabulous sometimes all in the same breath. We’re living this truth right now. Aidan is still recovering from surgery, and while he’s thankfully not in pain, he’s still very much...

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I Forgot to Miss You

Dear Epilepsy, I forgot to miss you. You’ve been in our house for over two years now. At first, you were so quiet I didn’t realize you were even there. I had been actively blocking the doctor’s warning that said many kids with neurological impairments will develop Epilepsy. Then there was no denying your presence. So I found my community, other seizure moms who get it, and I may have gone a little crazy. You were...

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Purple Day Fact Three

There are two major groups of seizures; primary generalized and partial. Within those groups there are many different kinds of seizures which are named according to what they do to the brain and body. Aidan has absence seizures which are characterized by staring into space. He also has myoclonic seizures which present as his hands flying out and his legs flexing. Aidan also has complex partials which are very difficult to tell if they are a...

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Purple Day Fact Two

Epilepsy is a neurological disorder. It is NOT contagious. It is NOT a mental illness and it is most certainly NOT any sort of demon possession. This is why it matters to me

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Purple Day Fact One

Approximately 3 million Americans have Epilepsy. That’s more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson’s COMBINED – yet receives fewer federal dollars per patient than each of these. This is why it matters to me

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Purple Day Fact Four

First Aid procedures have changed over time. When you see someone having a Tonic-Clonic seizure (formerly knows as grand-mal and what is most frequently depicted as a typical seizure) DO NOT put anything in the person’s mouth. They won’t swallow their tongue but they are also not in control of their biting. For the most part, do nothing but time the seizure, call for help if necessary, clear the area of objects the person could...