Newly Diagnosed: You Are Not Alone on Your Journey
Whether you are a patient or a caregiver, it’s important to remember that you are not alone on this journey with Dravet syndrome and that others have been in your shoes. Here’s a collection of our columnist’s words thatshe would like to share to help guide, inspire, and encourage you.
Parenting and Caregiving Are a Balancing Act, but I Won’t Quit
Although columnist Meagan Cheney tries to divide her attention equally between her kids, Dravet syndrome often makes it difficult. Parenting is an all-consuming job, and having a child with special needs involves spending more time taking care of those needs.
Dravet Syndrome Doesn’t Take Away Our Dreams, It Adjusts Them
Meagan always dreamed about a life with daughters. But when her youngest was born with Dravet, she had to readjust those dreams. It might not be the life they imagined, but it can’t take away all her dreams for her little girl.
I Can’t Let My Fears Limit My Daughter’s Abilities
Meagan evaluates her emotional reaction to a comment her daughter Austen made about life goals and unicorns. While she may never be an astronaut, there are plenty of goals she can still achieve as she grows up.
I Cried Tears of Joy the Day We Found Our Village
Meagan describes her family’s elation the day they met other parents of special needs children at a party. Her daughter was finally able to play with other kids who were like her.