By Samantha Brant, Family & Community Engagement Manager, and mom to Macy
As I returned home from this year’s RettAway at Morgan’s Inspiration Island, my heart swelled with not only pride but warmth. I attended the last RettAway in 2017 as simply a parent to a 3-year-old little peanut, Macy. And I took so much away from that experience: seeing that wheelchairs could be waterproof, learning the advantages of an accessible van, watching kids walk and play next to each other inclusively with joy, and so much more. I walked away in awe of the Rett community that opened their arms and brought my family in. That RettAway opened my eyes to the need for more community gatherings and brought me to my current role as your Family & Community Engagement Manager at IRSF.
Since then, we’ve all been through a lot, navigating the highs and lows of not just being a Rett parent, but being a Rett parent through the changed world of the COVID-19 pandemic. It was so special to be with this community again last year at ASCEND, but being together at this year’s RettAway was simply magical. I gained so much more appreciation, inspiration, and insight from every one of you! You shared invaluable tips and tricks on how to travel with my growing girl—including what fan to use when it’s 107 degrees outside in the Texas heat! Thank you for commiserating on the rollercoaster that each of our journeys brings and showing, once again, how important gathering together is for our community.
I want to express my appreciation for everyone involved in the RettAway. For the hotel staff that kindly served our families while we “took over” their entire dining area. For the staff at Inspiration Island and Morgan’s Wonderland that welcomed our families with no stares or questions other than, “How can we make your experience the best possible?” For the IRSF staff who spent months planning an amazing experience for others and the Acadia team who volunteered their time and strength to help our families have a great time. For the families that drove or flew in from 26 states, and the families who began their journey but had to turn back due to unforeseen circumstances. But mostly, I’m appreciative of the opportunity to hug each other in person again through all of the trials and tribulations we each face with our loved ones with Rett syndrome.
This RettAway left me inspired to continue to serve the community in a way that will allow us to grow stronger and more united. Just watching families that were meeting others for the very first time with unsteadiness in their stomachs be welcomed and hugged by families who have been doing this journey a little longer—I have no words. Thank you for your drive, compassion, tears, laughter, knowledge sharing, and simply put kindness!
As I continue to serve the families in our community, I hope each of you knows IRSF will be with you every step of the way. I can’t wait to see you again at one of the many upcoming events this fall – RettEd Days, Strollathons, and our 4th annual Raise a Glass for Rett – and hope you’ve marked your calendar to join me in Denver next June for the ASCEND Rett Syndrome National Summit.