Meth Labs and Tall Tales

Ok, this one was my favorite. I invited my Facebook friends to caption this photo of Aidan and his cousin Owen. You, my people, proved yourself to be witty and hilarious and a teeny bit dark.


First place for surgery reference goes to Christine: 

Yeah dude, I know you’re tired. I am too–you know after two major surgeries and opening my back wide open and stuff. But you’re tired? Sure! Me and my titanium back can carry you!

First place for surgery AND Superman reference goes to Joanne:

I said TITANIUM…not Kryptonite…duh!

First place for preach it sister!  goes to Lynn:

It’s called “kale.” They think we’ll eat it if they color it red….don’t touch it!

First place for calling our boys out as studs goes to Michelle:

It’s hard to be as popular as we are, Super A. THIS should protect us from all those girl cooties.

First place for being super close to the truth goes to Nancy:

We admit the frogs have all escaped, but we have deduced that yes, frogs do have lips.

And the grand prize of a hot tub (which I’m totally not buying) for dropping these adorable boys into a Breaking Bad scene goes to my brother Scott:

You lost your partner today. What’s his name – Emilio? Emilio is going to prison. The DEA took all your money, your lab. You got nothing. Square one. But you know the business and I know the chemistry. I’m thinking… maybe you and I could partner up.

And the truth is:

Obviously they were dissecting a dead bird on the back deck of their Pop’s house. Duh.


Some more great answers:

Michelle: So Aidan, I hear theres a mold problem……we got this.

Carrie: No job too small.

Joanna: Aren’t there child labor laws against this?

Eileen: Dude, our Moms went a little overboard with the no germs thing.


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Food for Thought


Food for Thought – September 8, 2014 Edition

I Thought We Had More Time – By Jamie Krug on the HuffPo –  A story about a child who realizes he’s different and his sister’s beautiful response.

No Owey, you’re going to be really fast one day. You can grow into my sneakers soon and I’ll give them to you — even though they’re pink — because they light up and that makes people really fast. And you should ask Daddy to help you with your running skills. Daddy’s really good at stuff like that. I bet you’ll even beat me one day! She told him.

When Patients Read What Their Doctors Write – By Leana Wen on NPR – An important piece about doctos and patients working together. I always tell parents of kids with chronic health issues to ask for the clinic notes from the doctor. It’s cheaper and easier to ask the doctor than to go through a medical records request.

After the first year, the results were striking: 80 percent of patients who saw their records reported better understanding of their medical condition and said they were in better control of their health. Two-thirds reported that they were better at sticking with their prescriptions. Ninety-nine percent of the patients wanted OpenNotes to continue, and no doctor withdrew from the pilot. Instead, they shared anecdotes like mine. When patients see their records, there’s more trust and more accuracy.

Good Night, Margaret – Rick Gershon and Catherine Spangler in the NYTimes – A beautiful love story about two people with Muscular Dystrophy.


So, what else do I need to be reading?


Are You Smarter Than a Fifth Grader?

Last year when we rennovated our house, I painted one of the hallway walls with white board paint. I thought it would be fun to quote song lyrics and lines of poetry and various bits of inspiration. It’s mostly been empty but this is what’s taking up space right now:

IMG_6970 IMG_6971

So I may be smarter than a fifth grader but only by a little bit when it comes to science. With the results of Aidan’s genetic testing in, I’ve been trying to gain a better grasp on the subject. Sure, I aced biology in high school but that was approximately a million years ago and so much has changed in the field and now it actually matters to me. I’ve armed myself with a beginners book and more on the list to follow and am taking an online course in Genomic Medicine. I have three pages of notes from the first lecture, sprinkled with a few question marks but also a “yup” and “wow” here and there.

I love being a student, always have. Clearly it’s different this time. I don’t know if I can memorize or retain the amount of information I once did and I’m secretly hoping there will be an abundance of metaphors to help me lock it in. I don’t mind being intimidated by the material because it’s not for a grade; it’s for a major life lesson. Everything I learn could potentially be applicable in a way that feels important. Our bodies are quite simply amazing, so yes, I have my eyes on a neuroscience class as well because don’t even get me started on the brain.

So I’m stretching myself, having fun and am maybe feeling a tiny bit out of my league:


AM I DONE YET? Send help!!!

Certainly this adventure has been incited by being Aidan’s mom, but this is a piece of Disability World I really feel like I’m engaging in for me. It’s certainly not self-care in the way that a walk on the beach or coffee with a friend is, but I’m ready.

And because at the end of the day it’s words that get me more excited than molecules (though proteins keep getting higher on my Wow list), this Shel Silverstein poem is at the very top of the wall: