As originally seen on Today.com – The film is available today at https://watch.showandtell.film/watch/magnoliashope
Rett Syndrome: Don’t Google It.
“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. One thing was certain, 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 easily accessible. 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. At first, when her milestones began lagging behind, I would scroll through my phone searching for clues. I became a part time sleuth, looking for any clues that might confirm or categorically dismiss my fearful assumptions. 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 okay 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 briefly 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. Doctors, therapists and any concerns we had were temporarily abated. As she progressed, and ultimately, with the aid of the therapist, started hitting many milestones, worries about anything serious waned. Still, I continued to shoot video of Magnolia doing therapy, even though it had become clinical. It had become just a way to monitor her progress. 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 over, Magnolia was slamming her body in her crib. Around the same time, Magnolia’s skills seemed to stagnate again. 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 nauseous. 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 forcing 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 there she was, Dr. B., the developmental pediatrician specialist, was standing there calling Magnolia’s name. I scooped up my daughter and slowly went into the Doctor’s office. Dr. B 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 keeping updated 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 the hour long session. Dr. B 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. Dr. B 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.
After weeks of waiting for the results of the genetic screening, I actually forgot we were still waiting for news. When Dr. B eventually called to let us know the results of the test were back and asked that we both come to her office, 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.”
As much of a rollercoaster the past year of doctors, therapists and unusual behavior had been, 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 7 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.
Our intention was never to make a documentary about our lives. We took videos to send to her pediatrician and physical therapist in order to keep a journal of her progress. But, when we had decided that living with a longing for dreams that would never come, 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 a 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 everyday 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.
Making a documentary about our lives wasn’t what we were planning. The reality is, there are many families just like ours. We wanted to share our story, to raise awareness for 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. In fact, maybe you should google it.
You can buy tickets to stream our documentary at http://www.magnoliashopedoc.com/ .
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 .
We’ve been able to share our story with some news outlets lately and will continue to share those as well. Though you all already know about all the things we share :).
TODAY SHOW – the original post – https://www.today.com/parents/rett-syndrome-magnolia-s-hope-mom-shares-her-story-t201460
COLORADO PARENT.COM – NOVEMBER 30, 2020: https://www.coloradoparent.com/event/magnolias-hope/
MSN : https://www.msn.com/en-us/health/medical/documentary-magnolias-hope-shows-familys-struggle-with-rett-syndrome/vp-B1buSfS