I’ve always heard that South Dakota is known for The Black Hills and the carvings in Mount Rushmore. Quite honestly, the reason why we’ve chosen the route to swing by in South Dakota was mainly because of Mount Rushmore’s tourist appeal. If you show the carvings of the 4 Presidents, most people, if not all, will tell you where it is geographically located. Asking the names of the Four Presidents might be another story.
As we drove in a long and winding road, we are in awe of how beautiful this place really is. My husband Mike, who is the outdoorsy person in the relationship kept on muttering about how magnificent it would be if we were driving during sunrise and or sunset. The realist in me always have to know how to burst his bubbles and I mumbled — can you imagine driving this scenic views during winter?
There are so many curves, there are so many sharp turns, and you can’t fully appreciate the beauty of the scenic views because you constantly have to be aware of the signs on the road. Life with Angelman Syndrome and its symptoms are kind of like driving through Mt Rushmore. You constantly have to check your calendar for doctor and therapist appointments, seizures, upkeep of the latest medicines to help with gut, sleep, continence issues; and if the children with AS are school age —you worry about learning programs, and advocacy for inclusion. As a caretaker, you can’t appreciate the smallest occasions timely because before you think to celebrate, there is another therapy to implement and skills to teach. Once the child learns the typical pattern of growth that is when you unscrew that wine’s cork to celebrate.
Due to Angelman Syndromes rarity, our advocacy has rebirthed a desire to spread awareness not just in our circle of friends, but as well as to our community. We’ve launched this awareness using various media; Facebook, Instagram, Twitter, Vehicle artistry, blogs, but the most viewable form is TV news. We’ve reached out to various TV Stations along our route and Newscenter1 in Custer, SD graciously gave us a short segment helping us spread Awareness. While some of the live broadcast’s detail weren’t perfect representation of our journey, they’ve amended the story online.
