Tagged: diagnosis

15

The Stop Sign in Aidan’s Genes (PURA GENE)

I have something special to show you, a little piece of yourself. But first let me tell you why it’s so incredible to me. My son Aidan was born 13 years ago with an undiagnosed developmental disability so for 13 years I’ve been watching human development in slow motion. The strength of our muscles, the authority of the brain, the power of the body to heal. The same brain that’s made it difficult for him to...

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Food for Thought

Food for Thought – April 21, 2014 Edition Undiagnosed Children’s Day is coming up this friday and I want to share what I’ve written in the past. You can join us by wearing Blue on friday and posting on Facebook or sending me an email. Undiagnosed Children’s Day 2013 – probably the most comprehensive piece I’ve written about why it matters. Elevator Speech – Because sometimes you need a tidy answer. Inventing a Day – What’s...

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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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Genetics Update

Last week Garreth and I sat down for a science class with Aidan’s fabulous geneticist. She’s been following Aidan’s progress since birth and has already tested him for many genetic anomalies. A specific lab is offering full exome sequencing at no cost to us. This will be the most complete look at Aidan we can get right now and may give us some insight into his specific medical issues. I’m going to refrain from giving...

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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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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...

4

SWAN Awards

I was just trying to feel a little less alone and get a little help explaining the myriad of issues around having a child without a diagnosis when I staked claim to an Undiagnosed Children’s Awareness Day two years ago. By asking Dana to join me, what I found was SWAN (Syndromes without a Name) both in the UK and US. Clearly I wasn’t alone. It may seem ridiculous to have another Awareness Day. I’m...

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April 13th

Several years ago I invented Undiagnosed Children’s Day. I just claimed the day, asked people to wear blue, and wrote a little about what it meant to have a child with an undiagnosed disability. Last year, one night before April 13th, I asked Dana to celebrate with me. Nothing like putting another mom on the spot with no time to prepare. She rose to the occasion to continue telling her story. Honestly, I still run...

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Biggest Cop Out Ever

This post is the biggest cop out post ever and is brought to you by a severe case of writer’s block. And, frankly, dear readers, it’s time you pulled your weight around here. Aidan and I are headed to Yale in a few weeks. Yes, we really are all that.  We’ll be guest lecturing to a class of pediatric nursing students to give our two cents about living in Disability World. So, if you had...

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Snippets of Undiagnosis

— 1 — So next year on Undiagnosed Children’s Day, the day I totally made up, I will have figured out how to do a blog link up so we can hear from everyone. I’ll also remember that it happens on April 13th, so I can put the word out properly. Until then, check out these other stories…. — 2 — One Bite at a Time — 3 — Metamorphosis to Health — 4 —...