Tag: PCDH19

Epilepsy, faith, Special Needs, Top Stories

I’m a special needs mom and I need you to hold my arms up.

As I reflect back over the past two years, I remember many times when I felt like I was Moses, alone on a mountain, growing weary of the fight. There were moments though, when people came beside me and helped me bear the load. In small acts of kindness, friends and strangers came along and held our arms up.

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Epilepsy, PCDH19

Cautious Optimism

A year without seizures is a huge milestone in the world of epilepsy. Ironically, it is also terrifying. If Alyssa maintains her streak over the summer, then in the fall we will start to slowly wean her off of at least one of her medications. I have a love / hate relationship with those medications. On the one hand she takes large doses of mind altering drugs every day with a whole slew of side effects and an undetermined impact on her development. On the other hand, those drugs are keeping her alive.

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Advocacy, Epilepsy

A Child of Texas

Alyssa was a foster child who legally belonged to the state and people of Texas. When Alyssa was abused, the state stepped in to protect her because as a society, we believe that it is our obligation to care for our children when they need us. When we refuse treatment that could give an innocent little girl a chance at normalcy and life without seizures or side effects, we are denying our responsibility to her, and other sick children in our country.

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