Monthly Archives: September 2014

Preserving the view… Preventing the sunset…

outer banks 2014

This picture was taken this past summer when we took the kids to the Outer Banks of North Carolina for the first time.  We tried kayaking on the calm waters of the sound… calm it was… and quite beautiful. This is my younger son, Mitchell, kayaking for the first time.

Ever since we found out our boys have a rare disease causing them to lose the minimal vision they were born with, we have taken them to as many places as we can so that they can get up close to actually see some things as well as experience all that can be “felt” in a different place.  We can describe kayaks and bodies of water, etc, but getting up close and actually experiencing these types of things is what they need, and it’s what they love.  They compare the different beaches of different coasts based on the feel of the sand, the calm or fierce ocean, the smell of the air.  They feel the different climate changes on the top of a mountain versus the base, and they were in awe of the difference in snow covered ski trails of Colorado vs the usual man made snow ones of the Poconos near our Pennsylvania home.  They love to get to know a new city by meeting the people, walking the streets and taking in all it has to offer.  They especially enjoy cathing their beloved Phillies on the road in different cities and getting a sense of the crowd and the feel of the stadium.  Each city and vacation destination seems to have a “personality” and they love exploring it all.

Since they each still have a little bit of vision, I absolutely never take for granted when my guys tell me they can actually see something that I thought they couldn’t.  When Michael tells me he can see that a city skyscraper towers over us on the street, I  pause and take it in and let him tell me about it.   When Mitchell tells me he can see the white cap of the wave crashing against the dark wet sand, we stand there and take it in together.   We all laughed right out loud when we drove into the mountains of Colorado late the first night of our visit and the moon was so big and so bright they both shouted out “Oh my God we can totally see that!”

I used to stop and take these things in because it made me feel a little bit of happy to know they could actually see something that the rest of us can… like it was one more thing they were not missing out on.  Nowadays though, we take it all in just a bit longer so they  are sure to get every detail, and create a mental picture… a picture they’ll need to reference later because the day is coming that they won’t see these things anymore.

It is an interesting thing when your child has a disease that takes their precious vision little by little.  In one regard, we are blessed that it is subtle… they don’t sit each day and reflect on what they can’t see at the end of the day that they could at the beginning.  It is a more gradual thing that they don’t necessarily notice right away.   But that kind of blessing has a bit of a sucker punch to it: it hit my gut like a ton of bricks the day we realized Michael couldn’t see the trees on the lawn anymore.  And it was heart torture the day a baseball was at Mitchell’s feet and he spun around and around searching for it.

I choose to be grateful that  they remember what things look like… not because it makes their lives fuller or better per se, but it does help tremendously in their relating to what people are talking about.  And to be perfectly honest, some things are so beautiful it is hard to put into words… like a sunset.

mitch pointing at sunset

I am so grateful my Mitchell was able to point out the setting sun in this picture.  I am happy that both of my boys can see it, for now. And I pray every day that the work we are doing to preserve their vision and ultimately restore what is lost yields results soon.   My faith in our mission grows stronger every day, with every scientific breakthrough,  that we are going to get there… and we will indeed prevent the sun from going down on their view.  

 

The Eye Believe in Miracles BLOG is written by Kristin Smedley, mom of two sons living with blindness, as well as a sighted daughter .  The Smedley family co-founded the Curing Retinal Blindness Foundation and host the largest CRBF fundraiser, Bike the Basin.  If you would like to Join The Mission to help fund cures for retinal diseases please DONATE here.   If you would like Kristin to speak at your upcoming event, send an email to curingretinalblindness@gmail.com Together we can do so much.