Category: Family Synapse

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Life Undiagnosed (Part 1)

Some syndromes don’t have a name….   My son was born thirteen years ago and spent the next three months in the NICU because he wasn’t eating or breathing well on his own. He had every test under the sun – myriad of genetic testing, EEG, MRI, muscle biopsy etc. When no answer was found, he was sent home on a g-tube and just a touch of oxygen with no diagnosis. After six months he was...

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Kids belonging to each other

This: This is what Glennon means when she says we belong to each other. And then there is this: Not quite sure what it is? You read Rules by Cynthia Lord, right? The main character, Catherine, befriends Jason, a boy who uses pictures to communicate and wheels to get around. She proceeds to draw age appropriate symbols and words for him to use, such as “stinks a big one” in repsonse to the speech therapist who uses...

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You’re Not Alone

Well this is awkward, isn’t it? After writing a post that was shared widely and made quite an impact on people, I’m finding myself with nothing to say. First I should say welcome to my new readers. Thank-you for joining us on this journey. We all have a story and I’m looking forward to hearing yours. Let’s do this thing called Life together, shall we? I wrote Wishing Him Gone in hopes that someone else would be set...

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Momastery

Meet Glennon, a Dot Connecter with a cool name. She’s the author of the book  Carry On, Warrior, which is one of those pee in your pants funny and heartbreaking all at once books. Glennon is brave enough to speak the truth.   She blogs at Momastery and has started a non-profit which hosts these amazing Love Flash Mobs to raise money for individuals in need. My favorite piece that Glennon wrote is Quit Pointing Your...

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Inventing a Day

At the age of 41 I still find myself wondering what I want to be when I grow up and dreading the question of what I do. If the real question is how do I earn money, than the answer is I teach piano. I love it and it fits perfectly into my life. If the what I do question is integral to who I am, than I supposed I would answer that I’m a mom....

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Meet My Village

Having a child with a disability means dealing with chronic health issues. Most of the time we’re cruising along pacing ourselves just fine, sometimes even forgetting that we’re on a long arduous journey. And sometimes it feels like there’s always something. If it’s not a new set of seizures, then it’s a surgery. If it’s not battling insurance for a bed then it’s trying out a new medication. I’m not doing this alone. Not by a...

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Ketogenic Birthday

Aidan is turning thirteen this week and he can’t have birthday cake. As I mentioned yesterday, I will be eating cupcakes because I’m having a tiny pity party. But no cake for Aidan because we have to start to starve him, sort of. At this time last year Aidan was in the hospital having hip surgery while our house was under major construction. This was a big deal, to put it lightly. It was a...

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Turning Thirteen

Aidan will be turning thirteen in a few days. This is the age where we should be talking to him about his changing body and teaching him that privacy and modesty matter and haven’t been modeled well in our naked household. We should be telling him there’s plenty of time to have a girlfriend later and how he’d probably end up breaking her heart anyway and have no idea why, so why rush it? We...

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Team USA

Our 80 person strong team has landed in Sochi and they are ready to compete. Allow me to introduce you to a few names you’ll want to remember. Allison Jones – Jones has competed in the Paralympics seven times in each Summer and Winter Games since 2002. She’s an LW2 alpine skier and Para Cycler in the Summer Games. She earned her first medal in Torino 2006 for the slalom event. Jones has a mechanical...

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Oh Yes We Can!

Reposting for Paralympics in Rio – Also check out Paralympics.org to watch the Games! As we tune in to the Paralympics, it’s worth pondering how we speak about, think about, and perceive the athletes and people with disabilities in general. If you have spent anytime reading online, you’ll know that some people care a whole lot about what words are used to discuss disability while others care less about the words and more about the...