Inventing a Day

Tiny Superheroes

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.

If I’m on an airplane than the answer is everything from I lecture at Yale to I’m in the medical field to I’m a writer. Depends on my mood and how far we’ll get into the conversation before I’m called out as a fraud. While none of these are actually true, they are based on just enough of a smidgen of truth to be trui-sh.

Being the mother of a child with a disability has changed how I spend my time and what I need to learn along the way.

One of the most important lessons I’ve learned is that I can’t go it alone. It’s too overwhelming and can get quite lonely. I’ve had to learn how to ask for help. I’ve had to learn to reach out.

So while there are many ways for me answer the question of what I do, I’m currently landing here – I connect the dots. I’m a dot connector. Is that a thing?

I love getting together with other parents and offering encouragement, a listening ear, a three ring binder and hole punch to keep doctors’ notes, a list of service providers, or copies of letters to insurance companies. I really enjoy being the been there done that mom and knowing that someone else will benefit from my experience. Certainly others have done that for me.

A few years ago I had myself a big ole pity party when everyone else was wearing blue for autism, green for CP, pink for breast cancer, purple for Epilepsy. Aidan didn’t have a diagnosis, not even Epilepsy at the time. Where was the color for the kids who don’t fit in?

So here in my quiet little corner of the internet I decided to declare Undiagnosed Children’s Day in April and claimed the color blue for my cause. I invited Maya’s mom, Dana, to join me as she was the only other mom of an undiagosed child I knew at the time.

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Dana let me know about SWAN (Syndromes Without A Name). Good grief, an entire agency dedicated to undiagnosed children! SWAN, both in the US and the UK, got in on the action of making a little noise and raising awareness and helping me feel a little less alone. They promoted Undiagnosed Children’s Day.

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Then there’s Robyn of Tiny Superheroes. She’s a mom who sews capes for our kids with disabilities. She turned her cape sewing into a business and has dedicated it to raising awareness about different diseases.

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I contacted Robyn and asked if she would like to raise awareness for kids who DON’T have a diagnosis on this day that I totally made up; the day that SWAN validated and made into a real day so my pity party would have less hudling in the corner by myself and more heck yeah we’re with you. Undiagnosed Children is the official mission for the month of April for Tiny Superheroes. Can I even tell you how much I LOVE the slogan, “Some syndromes don’t have a name. All tiny Superheroes do!” I’m buying the t-shirt, for real. You can too and $5 of each purchase will go to SWAN and SWAN will continue to work with families to help make them feel a little less alone.

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So yes, I invented a day. I connected the dots. I brought people together in hopes of making everyone feel less alone. It’s what I do. I would love to have you join us.

*****

The Nitty Gritty

What: Undiagnosed Children’s Day

When: April 25th

Who: YOU! Wear blue on April 25th and post a picture on Facebook or email me. Share this post or any of the links below. Get involved in the following organizations:

Who: TinySuperoes are selling t-shirts and sweatshirts with money going to SWAN. You can also support a tiny superhero at anytime by buying a cape. And for free you can get in  on the “action” part of their mission.

Who: SWAN in the UK is starting an “It’s A Mystery” campaign encouraging everyone to get creative and get involved in talking about what it means to lack a diagnosis.

Who: Follow SWAN USA on Facebook as they continually provide information and support there.

(For those of you who are sticklers for details, yes the day has changed. It’s now officially the fourth friday of April every year. That’s helpful to SWAN for planning since they are a real organization and not just one mom throwing herself a pity party and making up days. Also, if it matters, I’m not an employee of any of these organizations.)

 

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