“Your daughter Magnolia has Rett syndrome.” The developmental pediatrician leaned in apologetically and added, “Don’t Google it.”
As the air left the room, my husband AJ and I processed those words. Then confusion, denial and grief took over. Our lives were forever changed.
Magnolia was born in the digital age when phones and cameras had already become ubiquitous and documenting her cuteness as a baby was easy. AJ and I were constantly taking picture and videos. So many videos! I remember laughing at the ridiculous amount of computer storage all of her videos took up, just in the first year. Videos of Magnolia laying in the middle of a blanket in the grass with the dog. Videos of Magnolia laying on the edge of the blanket with the dog in the grass. Videos of Magnolia laying in the grass, with the dog on the blanket.
It’s hard to delete a single memory when you are a new parent. Now, it’s just as hard to look back on them.
In her second year, we continued to hover, obsess, and love on her. When her milestones began lagging behind, I would scroll through my phone searching for clues. I became a sleuth, looking for any clues that might confirm or dismiss my fears. She wasn’t noticeably behind her peers, but my heart knew something was wrong. One day, I was posting pictures of Magnolia crawling at the park and eating grass; the next day I was googling "is army crawling OK at 14 months old.” The day after, I was sending video of her crawling to the pediatrician.
With each call, each appointment, her pediatrician was positive she would be fine. Even so, when the doctor offered me the option to start her in physical therapy to help her catch up, I didn’t hesitate. For the next six months, with the early intervention therapy, Magnolia was able to keep up with her peers. As she progressed, and ultimately, with the aid of the therapist, started hitting many milestones, worries about anything serious waned. I continued to shoot video of Magnolia doing therapy, even though it had become clinical. I remember looking forward to the time when she was through with her therapy and we wouldn’t have to document every moment. I started to hate taking videos of my daughter because it was no longer about saving memories.
Then something changed. In one of the videos I sent to our doctor, Magnolia was slamming her body in her crib. Around the same time, Magnolia’s skills seemed to stagnate. Our pediatrician changed his rhetoric from, “Everything will be fine” to “You need to see a developmental pediatrician.” Fear began to creep in while we kept reminding ourselves: Magnolia is strong. She is smart. She will be fine.
Sitting in the waiting room, waiting to speak to the developmental pediatrician, I felt nauseated. While we’d been staying optimistic and explaining all of her developmental issues away, as I watched Magnolia try to play with the toys, my heart hurt. The realization of her difficulties forced me to question my own optimism. No one can prepare you for this journey: the roller coaster of emotions, the mental exhaustion of “what ifs."
Then the developmental pediatrician specialist was calling Magnolia’s name. I scooped up my daughter and slowly went into her office. The doctor watched Magnolia while interrogating me about all things Magnolia. I shared my videos with her, gave her the document of milestones with dates and ages I had been diligently collecting on my phone. I described odd behavior, and talked glowingly about her minor triumphs — standing up, her adorable little skip when she would walk. While she watched my daughter, the love of my life, I looked away and cried.
After an hour, the developmental specialist looked at me and said, “I shouldn’t say this, but with therapy I believe she will be fine. I just want to run a few genetic tests, just in case.” The entire drive home, with Magnolia asleep in the back, I cried with relief.
Over the next six weeks while we waited for the tests. Magnolia progressed again. The doctor was right. Everything was going to be fine. Just to make sure, at her recommendation, we started more therapies — occupational therapy, speech therapy, horse therapy and physical therapy. I started letting myself get hopeful again.
I actually forgot we were still waiting for news. When the specialist called weeks later, she wanted us to come to her office to talk about the results of the test. We knew that wasn’t a good sign. Still, I forced myself to stay hopeful, thinking, “Maybe she wants to tell us the good news in person.”
After a year of doctors, therapists and unusual behavior, when we sat down in her office and listened to her share the results, we shouldn’t have been shocked. But nothing prepared us to hear, “Your daughter has Rett syndrome.”
It’s been seven years since Magnolia was diagnosed. December 17, 2013, was her D day, diagnosis day. Nothing prepared us for the grief. Her disorder continues to break our hearts every day. Rett syndrome is a rare neurological disorder that leads to severe impairments. There is currently no cure, though research continues every day.
Our intention was never to make a documentary. We took videos to send to her pediatrician and physical therapist in order to keep a journal of her progress. But we decided to fight as hard as we could. We would live our lives to the fullest. We would advocate; we would fundraise; and we would raise awareness for this little-known disorder. We would help push science forward. We’ve been through a clinical trial. We are prepared for Magnolia to be part of more. In fact, she is looking forward to it. We keep on pushing. That’s where we are. That’s who we are.
Our lives are full. We advocate for our daughter. We adapt as much as we can. We go on family adventures. We live every day with meaning and perspective.
Life with a rare disease can be isolating. The only way we know to feel less isolated is to tell our story.
There are many families just like ours. We wanted to share our story to raise awareness of Rett syndrome, but mostly to give hope: hope for those that are newly diagnosed, hope for those families going through hard times; hope that through the darkness, there is light on the other side. I hope you watch our documentary. You too, can be Magnolia’s Hope.
Through this film, the donations we raise for The Rett Syndrome Research Trust will help push the science forward. In a lab, scientists have been able to reverse the course of Rett syndrome, so if we can fundraise enough to help scientists translate their lab work into the clinic, our daughter and 350,000 people around the world wouldn’t have to struggle with Rett syndrome anymore. We want a treatment and a cure, not because we don’t accept who she is, but because without one, she struggles immensely, every day. We love our daughter and we understand the science, which is why we know it doesn’t have to be this way. It is why we hope you’ll help us change her future.
Magnolia Tesler and 350,000 others have Rett syndrome. Maybe you should Google it.
You can buy tickets to stream our documentary at https://watch.showandtell.film/watch/magnoliashope.
For more information about Rett syndrome go to www.rsrt.org.
If you want to read about our family’s story from the beginning go to www.magnoliashope.com.