Saturday, June 20, 2015

Looking Forward with Hope

Just because these girls have Rett Syndrome does not mean they are not still "Daddy's Little Girl" .... times one million! To all the Rett Dads - thank you for your special role in raising these very special girls.

by AJ Tesler

I remember the day my daughter got diagnosed with Rett Syndrome.  I remember sitting in the doctor's office and listening to her tell me about Rett Syndrome.  My mind was awash with questions - questions the doctor didn't have answers to.  I remember the feeling of helplessness and despair for what would happen to my daughter.  I remember the grieving period, the feeling that we had lost everything.  Thinking back on that period still hurts.  Looking back, I find, usually does.  But in that time, looking forward hurt more.  Not any longer.

I remember when it all changed.  When instead of being sad for myself or my daughter I decided to take action.  I called everyone I could get a hold of.  I asked questions.  I started volunteering for Rett Syndrome events.  I make videos for a living, so I started making videos to share with the world.   For me, and I imagine for most people, the faster I can help find a cure, the faster my daughter can overcome Rett Syndrome, and that gives me great purpose.  Being her voice has been the greatest pleasure of my life, and has given me purpose unlike anything I've felt compelled to do previously.   And that allows me to look forward with hope and optimism.  Being proactive for Maggie and for Rett Syndrome research, has allowed me the chance to dream and believe and as a result, those dreams have turned into certainty and at this point, I'm 100% positive that we will cure Rett Syndrome in her lifetime.

My wife and I, in periods of Rett difficulty, will remind each other that "we will win this."  I look forward to the time when I can correct that mantra.  Someday, it'll be nice to say  "we won."

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