How I Smile Through My Journey with Angelman Syndrome
We are now almost 10 years into our journey with Angelman syndrome and I’m still smiling. Not a cheesy, pasted-on smile, but a smile that says things are tough sometimes but we are doing all right.
Traveling through life with Angelman syndrome is not an easy path to manage. Each day is different. What makes our journey easier is taking one day at a time.
It feels good to say that we’re in a much better place now, years after having received the news that our then 1-year-old daughter, Juliana, had a rare neurogenetic disorder. Our being in a better position now is because we made a very important decision not too long after receiving that life-changing news.
The road less traveled
My husband and I decided that despite the diagnosis, we would choose to live our best life. This meant not feeling sorry for ourselves or letting labels cripple us or Juliana. Making this decision shaped how we moved on after our diagnosis, and it was so powerful that I wrote an e-book titled “Forward: First Steps on the Path to a Special Needs Life.”
Juliana with her parents shortly after she was adopted in April 2011. Their journey with Angelman syndrome started a few months later. (Courtesy of Sabrina L. Johnson)
Tell me something good
Early in our journey, I felt like it was a struggle to find resources to help us. I didn’t want to hear the horror stories about Angelman syndrome. There would be plenty of time for that. I wanted to hear the success stories. Finding them proved difficult, but as the years have rolled on, our lifelines have gotten so much better.
I have only ever relied on a few sources about Angelman to give me facts and insights I can trust, such as the Angelman Syndrome Foundation. This foundation dedicates an entire section of its website to Angel success stories, which is one of the reasons it has become my family’s primary source of information for all things related to Angelman syndrome.
And, of course, this website, Angelman Syndrome News, does an excellent job of simplifying the most complex research about the disease. I’m glad we have come this far with awareness about Angelman and that we have a place to share good news.
I smile not because I have this thing licked, but because I know that as time passes, there are more reasons to be able to hope for a cure, and because life continues to get a tad bit easier for us.
We’ve got nowhere to go but up from here, and that gives me plenty to smile about.
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Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Angelman syndrome.
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