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PARENTING PAST BLINDNESS: a dad's perspective

May 17, 2017

When my son Louie was five years old, the doctors told us he would lose his vision.  They explained that Louie had a disease called Stargardt that would steal his vision over time.  No estimate of the length of time we had or how much vision he would lose.  Stargardt is a genetic disease, passed on from my wife and I through a rare match-up of recessive genes we both carry.  We had never heard of it.  There is no treatment and no cure.

 

Fear.  Sadness.  Guilt.

Louie is now almost 17 years old.  While he has lost a significant amount of his sight, he has found his way to make it in a visual world.  He is a successful student, athlete, and social entrepreneur.  I’m certain he has a strong base to build a long and valuable life of contribution to the world around him.

 

People often credit my wife and I for his success.  It’s not deserved.  We are just like most parents around us.  We do our best and we make mistakes.  I’m pretty sure what has made Louie successful is instead, directly within Louie.  And the degree to which we can be credited is more about getting out of his way (either on purpose or by accident) rather than anything we did.  Add to that mix a bit of normal parental encouragement and you land on our ‘secret.’

 

Encourage.  Learn.  Experience.

 

The artist Banksy is recently quoted as saying “A lot of parents will do anything for their kids, except let them be themselves.”  If it were only that easy.  We’ve been taught, told and sold the idea that we need to shape our kids lives.  I’m telling you it’s a trap – and when you have a kid that is dealing with a significant disability like blindness, the trap is even bigger.  And for me, that trap can best be defined as all those things that drive my own fears.  I believe most of the excess in parenting is born out of our own fears and our best intentions to help our kids avoid risk.

 

It’s a fine line – balancing responsible parenting, fear, and letting your kids experience life on their own terms.  While my wife and I have told Louie ‘no’ more than he would like, we also let him try things that initially scare us.  I’m reminded of a time a while back when Louie was planning a fundraiser for the Foundation Fighting Blindness.  He came to me and said he thought we should have a ‘Skiing in the Dark’ (blindfolded skiing) event.  I did my best to explain to him why we would not do that (100+ kids careening down a hill while blindfolded and on skis is way beyond my risk calculation) – but he just quickly jumped to the next idea ‘Climbing in the Dark.’  Louie called Vertical Endeavors himself to pitch the idea and they loved it.  It ended up being a good mix of fun, challenge and safety.

 

I really believe our kids, blind or sighted, have success built right in.  It’s the job of the parent to find the right balance, get out of the way and encourage our kids on their path to success.  If both you and your child don’t experience mistakes and failures along the way, you’ll never know their true potential for success.  Find experiences that have the opportunity for failure and success – and go do those things.

 

Risk.  Opportunity.  Success.

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