Thoughts on life, disability, and the power of connection.

17

Love and Marriage

 (note: This photo was taken after our family photo was an epic fail so we decided to embarrass our kids. Feel free to say, “eeww, groooooss.”) I had a conversation with a friend recently regarding marriage. While I acknowledged the occasional desire to head for the hills (beach, really, in Greece, specifically) he said, “Yes, but you have a lot of stress in your marriage.” He was referring to raising Aidan. While this is true,...

3

What Can You Do With Half a Brain?

In light of my going postal for a moment regarding my son’s brain, I bring you a post on how awesome the brain is. I finished the book The Brain that Changes Itself and highly recommend it. It addresses the issue of plasticity in the brain; how we can learn and unlearn necessary skills; how the rest of the brain will pitch in and get the job done if part of it is injured or diseased. If...

6

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 —...

2

My Former Life

I had a great life before kids. Wait, let me rephrase that….my life was different before kids and it was great in a different way. I worked in the field of education in varying capacities and loved it. I love kids, and being creative, and watching young minds blossom. Right before I had Liam, I worked as a teacher’s aide in a third grade classroom with one student in particular. I was given free reign...

4

Dirty Work

At some point in my life I took the tedious steps to being a responsible parent, well, some of them anyway. First we got life insurance. Whenever I point out that my husband is worth way more dead than alive, I’m quick to mention that all of that money would be necessary to deal with the depths of my despair because I love him so dearly. I’d need all of my girlfriends with me for...

0

Liam Revisited

I know Liam already got to share his story for the Faces of Epilepsy series. However, he recently had a writing assignment to write anything from a chapter of his life. He chose to  write about Aidan’s hospitalization with no help from me. I found it very insightful. Please take the time to read it here. I emailed Liam’s teacher to tell her what a thoughtful assignment this was. I’ve asked Liam about this incident...

0

Meet Kelly

Meet Kelly, another guest writer in my Faces of Epilepsy series. When I first asked Kelly to share her story she said, “I don’t think it’s much of a story.” It is. Everyone’s journey looks different, which I why I’ve done this series. The more Faces of Epilepsy we see and the more we talk about the different ways Epilepsy presents itself, the more aware we are and the quicker the next person may be...

1

Meet Hillary

Here is another guest post in my Faces of Epilepsy series.  A quick reminder as to how we can jump from Undiagnosed Children’s Day back to a series on Epilepsy – Aidan was born with an undiagnosed disability; last year he was diagnosed with Epilepsy; this is only a piece of the puzzle of Aidan as opposed to a complete descriptor of what is going on with him neurologically. Now onto Hillary. My sister was...

2

Why Wear Blue?

I’ll admit, I sorta made up Blue Day last year because it felt like everyone else had their color and their awareness month and even their own cool logos.  I felt left out and in my very own pity party decided to start a fake day to recognize undiagnosed children. But here’s the truth… when Aidan was 6 years old he lost services, not in school but with the state. And by lost, yes, I...

1

What Now?

Aidan has been followed by a wonderful geneticist. Through all of Aidan’s (and our) genetic testing we’ve discovered that Aidan and I have extra genetic material on our third chromosome. I’m pretty sure that’s where the good looks and big brains are stored. We see the geneticist every year and she frequently has new tests to run. We’ve gotten accustomed to Aidan’s lack of a diagnosis. We set goals for him; he works hard; we’ve settled...