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

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Thankful Thursday – Affirmation

Today I’m thankful for the affirmation that I have great doctors. There can be a rift between patients and the medical community whether it be from fear, communication barriers, or power disparities. Just last week I ran across both a medical professional and another parent who know Dr. Hip who is performing Aidan’s surgery in March. The medical professional assured me of Dr. Hip’s knowledge and experience and the parent spoke of his great compassion....

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Putting on Your Oxygen Mask

    November is over and we’ve already forgotten how stuffed we were with turkey and chocolate. It’s excellent to have a time of year to collectively focus on gratitude, and certainly that’s a quality we try to cultivate at all times. Often it’s the “counting blessings” frame of mind that gets us through difficult times. Many of us are able to find the good amidst even the most painful challenges.   What if our...

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Aidan’s Smile

When I see Aidan smile, I know he understands love and family; he knows who I am; he’s in there. Having a child who is non-verbal is frustrating on so many levels. I’ve often been asked what he understands. Because he doesn’t have a consistent communication method, it’s hard to know. Sometimes people wonder if Aidan recognizes them. Certainly there are professionals in his life that have to “prove” his knowledge and keep accurate data...

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Seven Snippets

— 1 — Have you ever had the philosophical conversation about walking and talking and which is more important and which you could live without? Some parents would not change their child’s disability because they believe it is the unique quality that makes them who they are. I definitely have an opinion on that but, it’s complicated, and there is no “right” answer. Robert Rummel-Hudson writes about this question in regards to his daughter and...

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A Mobilized Community

Do you know how many people die from breast cancer in the United States every year? 40,000. That is 40,000 too many. It’s also just a number. It doesn’t tell the story of lives cut short, family and friends left grieving. It doesn’t speak of the three million breast cancer survivors currently living in the United States who have been changed by their battle. There is good news, however, and it deserves reflection. The good...

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1 in 26

1 in 26 people in the United States will develop Epilepsy at some point in their lives. It’s more common than you may realize. Two-thirds of people living with Epilepsy are able to control their seizures and may not be recognized as having a neurological disorder. Check out this video by the Epilepsy Foundation.   Here’s why it matters to me:

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Happy Thanksgiving

Here I give you my favorite Thankful Thursday posts: I’m thankful for the beach. I’m very thankful for other seizure moms. And most of all, I’m thankful for nose picking. Not that it’s a competition, but I’m probably more thankful than you are. Have a Happy Thanksgiving!

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Counting Blessings

I stand by my words that I don’t simply want to count my blessings; I want to grow a space in me where contentment has a stronghold. Sometimes that means taking a moment to count my blessings, and sometimes it may seem like I’m digging deep to count. So here goes: I’m really thankful for my physical therapist who writes letters to justify Aidan’s medical equipment. My response to the letter we got from insurance would...

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Veterans Day

Let me first take the time to say thank-you to our veterans. I’m grateful for your service and your sacrifice. Next, I’d like to encourage everyone to read this amazing tribute to military wives. Thank-you also to our military families who have made incredible sacrifices as well. It’s still Epilepsy Awareness month, and yes, these two subjects intersect. People with traumatic brain injury (TBI) are at greater risk for developing Epilepsy. Our most recent wars...

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By the Numbers

Epilepsy is the fourth most common neurological disorder in the U.S. after migraine, stroke, and Alzheimer’s disease. It is more prevalent than autism spectrum disorder, cerebral palsy, multiple sclerosis and Parkinson’s disease combined. It affects 65 million people worldwide. Despite how common it is, epilepsy is among the least understood of major chronic medical conditions, even though one in three adults knows someone with the disorder.” Taken from: Epilepsy Foundation Why it matters to me:...