Last night Lisa and I watched "Magnolia's Hope", an intimate documentary about a little girl with Rett Syndrome much like Madison. A lot of it hit a little too close to home, but at the same time it was nice to know I wasn’t alone. It was nice to see another family… another DAD, going through the same things I am.
The reason I decided to start telling my story publicly two years ago is similar to the reason Magnolia's story was told. It was to advocate for my kids and to raise awareness that often behind the filters and photoshop of Instagram, there are real, raw and vulnerable stories that need to be heard.
A lot of the time, the stories aren’t pretty. I was scared of this fact at first. Who would want to read about our constant struggles? But everyday more and more people show up to read and listen. Some even ask questions and interact, attempting to get to know my family from afar.
For those people who find my story fascinating or inspiring, for those who have fallen in love with Madison, for those eager to understand what it’s like living with Rett Syndrome, this movie is for you! While far from identical, there are a lot of aspects very similar between Madison and Magnolia… even the opening audio clip. There wasn’t even an image on the screen yet and I looked at Lisa and said, “that sounds exactly like Madison!!!”
I want to encourage you - the individuals looking in, trying desperately to support us but can’t quite grasp or fathom what it’s like with this horrible, devastating disorder - to watch this documentary.
I’m also well aware that a lot of (you) my followers are Rett families. They are indeed the nicest people I never wanted to meet. But at the end of the day, we are looking for ANY form of distraction to allow us to escape our reality for a brief moment. Watching a documentary about the very disorder that we spend all day fighting with, is in some ways the last thing we want to do.
However, for me it was oddly motivating. Seeing another family sacrifice and pour everything they have into their daughter, made me ask myself “could I be doing more for Madison?” It was reassuring in that it showed me I’m not the only one fighting the battle from dawn until dusk - and then a little bit more in the dead of night. Finally, it was nice to learn a little bit more about a friend.
The Rett Community is a small, tight-knit group. When we all share something so significant, yet so rare, it brings us all together in a very unique way. We want the best for each other; and we're always there to support each other, even if it's just through watching and sharing a film like this.
This documentary is real, raw, and vulnerable. It shows the sad, dark side of Rett and yet, it also shows the hopeful side - the kind of hope that brings us together, lifts us up, and gives us the courage to fight another day.
This is our hope. This is Magnolia’s Hope.