The last couple of months have been somewhat sleepless in our house, as both boys have been taking turns getting sick, so I welcome this new month and season with the hope that our nights become restful!  The last day of February marked "Rare Disease Day", a day that effects us personally since Leber's Congenital Amaurosis (LCA) is an orphan disease.  There are between six thousand and eight thousand different rare diseases, but when  grouped together, they are no longer so uncommon.  One in ten Americans are somehow effected by a rare disease.  All of you who know Gabe have been effected by a rare disease. I, however,  prefer to think that you have been touched by a very special little boy.
     We have Swedish family in town, and it is fun to see Gabriel interact with them.  He clearly remembered his grandmother, "Farmor", this time, and I think he enjoys having people in the house.  As one of our Swedes leaves today, I wonder how Gabe will remember her.  Has her voice been mapped somewhere in his memory?  It makes me contemplate how many people that Gabriel truly knows.  If they have never made an effort to interact with him, he doesn't know that they exist.  All of us who are able to see  get to know people even if we don't have personal relationships with them.  You "know" the regulars at the coffe shop, and you "know" the mailman,  You see the same people walking their dogs or biking around the neighborhood, and you see the various people sitting in church, many times in the same spots every week.  You may never exchange a single word,, but you know them in a certain way.  It is an awareness that you have of your community, and Gabe doesn't have this.  It falls under passive learning through sight. 
     From the time we are born, we learn by watching and observing, but Gabriel learns differently.  He has his own ways of figuring out  the world.  Gabe has our entire house mapped out, and it is fascinating to watch as he tries to learn even more about his environment.  He has discovered chips in the paint and dents in the walls that I never knew existed.  He rarely runs into things anymore at home, walking freely and stretching his hands out at the right moment before colliding with a table or a wall.  He often stands at a corner where two walls meet, and will alternately tap them, as they make different sounds.  He also measures distances using his arms.  He touches the television, for instance, and then stretches his other arm out towards the coffee table, and then he realizes that it is a distance of one "Gabe arm's length" wide.  Most kids could care less what a wall sounds like or how wide a walking space is, but Gabe spends his days figuring these things out.  In one way, he is really easy to keep happy.  We just let him loose and let him discover.
     Of course, Gabriel has regular toys that he loves to play with, but some of  his  favorite activities are a bit unorthodox.  He is obsessed with doors, and can spend a good twenty minutes opening and closing a door over and over again.  He gets into a rythm of open, slam shut, jump up and down with joy, and repeat process.  Our mostly sweet, easy-going, and gentle little boy can throw himself the most angry temper tantrum if you take him away from a door.  He doesn't discriminate either.  He loves all doors, whether it is a house door, cabinet door, dishwasher door, wash machine door, or refrigerator door.  The refrigerator has an extra bonus since the doors are noticeably colder to the touch.  Gabe feels the doors with his hands, cheeks, tongue, and once even put his bare belly on them.  And yes, all of this is followed by immense giggling!
     Gabriel's language is finally coming along.  We actually had him evaluated by a speech therapist, who came to our house.  The funny thing is that  during the hour that she was here, Gabe decided to speak three new words, and has added words daily since then.  This was after months of saying nothing new.  It was as if he sensed that he needed to step things up a notch!  Although the evaluation determined that Gabriel is about nine months behind with his talking, we are no longer worried.  He is talking a lot now, and tries to actively mimic what we say.  He also says some simple sentences.  My favorite thus far is, "Mama's home"!!  I walked in the door and he was jumping up and down saying that.  Later that afternoon Bert pulled up in the driveway.  When Gabe heard the sound of Bert's car, he said "Papa's home"! 
     One thing that remains a challenge is physical activity.  Although Gabriel gets around well and has great body awareness, I can't let him move around independently when we are out.  I can tell that he craves this independence, as he sometimes refuses to hold my hand and walks in the complete opposite direction.  He doesn't understand why I don't always let him roam freely.  He doesn't know that he is headed for a sea wall or that the cars on the road next to us can hurt him.  When we are in a relatively safe environment, we try to give Gabriel the freedom to explore, always giving verbal cues.  If you ever spend time with us, you will notice that our conversations are frequently interrupted with "Gabe cues" such as "wall", "step", "hands out", or "STOP"!  He has learned to listen to us!  It has also become second nature for us to spot Gabe.  As he explores, I try to keep my hand close to his head as a buffer against potential bumps.  I automatically hold table corners, and catch myself doing this even if Gabe isn't around.  I have also caught myself giving Oliver verbal cues!  
     One thing that has caught our attention in the last several months is that Gabriel echolocates to a certain extent.  It was very clear when we were house hunting, as we walked through homes that we had never been to before.  Somehow Gabriel knew where the doorways and openings were in the walls by the way the sounds/echo change.  I have read that this skill can be fine-tuned.  Certain blind individuals are able to get around independently without a cane, and can even tell you the dimensions of a structure or a room that they are in.  They can do this by clicking with their tongue and listening how the sound bounces back.  It is intriguing, and something I hope Gabriel will learn more of as he gets older. 
     Gabe definitely keeps life challenging and interesting, and has redefined what normal is.  I often realize that I have to adjust my own attitude in certain situations.  For example,  there have been several times over the last couple of years that I have found Gabriel playing in a pitch-black, dark room.  My initial response is always the same: fear and slight panic.  What if Gabe hurts himself?  What if he is scared?  But unlike most children, Gabriel is not afraid of the dark.  Darkness is his reality,  so he has already conquered this common childhood fear.  And this is because of his blindness!! 


Louise Barrett
03/04/2013 4:11pm

Becky, what great insights. Maybe one day you will write a book for families who have babies without sight. What you have written is so encouraging and positive and joyful. Gabe is an amazing child. (Oliver, too, and of course I am a huge fan of you and Bert.)


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