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     "Go Gabe Go"! This has been the mantra in our house the last few weeks, and little Gabe's voice echo these words as he explores and tries new things. Our newest adventure has been walking with his first cane. We received it a little over a week ago, and Gabriel took to it almost immediately. I was expecting it to be a challenge to get him to even hold the cane, but luckily this wasn't an issue. For now I hold my hand over Gabriel's hand to help guide the cane from side to side, since it inevitably gets waved around like a sword if I don't help!! We have gotten into the habit of bringing the cane with us, and have already explored many different places with it. When Gabriel "finds" things with the cane, he laughs and giggles, and then reaches to touch whatever it is that he has discovered. It seems funny to me that aside from his TVI (teacher for the visually impaired), Bert and I are Gabriel's main teachers when it comes to his mobility training. I can honestly say that I would not be able to get around using a cane if someone were to blindfold me, but this is what we expect from Gabriel. The world expects Gabe to adapt.
     One thing that struck me the first time we ventured out with the cane was the attention we attracted. I never broadcast Gabriel's blindness when we are out and about,, but it is obvious now when we use the cane. I understand that people may stare, but it is definitely a different feeling. Mostly people smile as they watch Gabe. Afterall, he is super-cute!!  It is also obvious that some people just don't know how to react to him. 
     I often wonder how other children will react to Gabriel once the time comes to send him to school. He actually tried to socialize on his own for the first time with other kids besides his brother. It was in the waiting room of his occupational therapist's office, and he heard three other children laughing and playing. With a little grin on his face, he walked towards them, but as soon as he got there, they were off to another activity across the room. Gabe listened and followed, and again was just a bit too late for the fun, as the other kids were off doing something else. I was so proud of him for trying to interact, but I was also very sad to watch this.

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     Gabriel has become quite adventurous and fearless. He often pulls his hand away from mine when I try to hold it, as he would much rather free-roam. Afterall, his battle cry is "Go Gabe Go", not "Go Gabe and Mama Go"! He climbs up and down stairs without assistance, and often tries to take two steps at a time. He also enjoys walking backwards throughout our house, which is fascinating to watch since he usually knows where he is going. Gabriel's need to explore can get tricky when we are out. As I mentioned before, he no longer wants to hold my hand, even when we are at a restaraunt, store, the park, playground, church, or somebody elses house. Gabe doesn't understand why we cannot allow him to walk about freely and touch everything or everyone. It is frustrating for him as well as for us, since this is Gabriel's only way of discovering places. Not allowing him to explore is one of the few things that can set our usually easy-going boy off. In a way, by keeping Gabriel buckled in his stroller and not allowing him to explore, we are denying him one of his senses. I have found that this is one of the cruelties of being blind. You learn to "see" your environment in a hands-on fashion, but certain situations or places don't allow for that, and you are truly left blind.
     I am reminded on a daily basis what an amazing little boy I have.  On more than one occasion other people have commented that Gabriel must be a lot of "work", and they wouldn't want to be in our situation.  I'd rather not be in this situation either, but I only say that because I want Gabriel to see and experience all that the world has to offer.  I have absolutely no regrets about having Gabriel, and he does not require a lot of "work".  Yes, we have to attend therapies three times a week, and it takes extra time to teach Gabe certain things that other children learn easily by watching others.  I also don't have the luxury of putting Gabriel in front of the television if I need a moment to cook or just take a break.  But these things seem so trivial when I consider what an easy child Gabriel is.  He has a sweet personality and has the patience to learn and be taught by us.  An average two to three year-old is known to throw temper tantrums and be stubborn at times.  This is something we rarely deal with when it comes to Gabriel.  He spends most of his days with a smile on his face, being silly and sweet, and singing!  In fact, as I sit writing this, Gabe is playing beside me, humming to his music!  What I have realized is that Gabe was given a big challenge in life by being born blind, but he was also given the perfect personality to deal with it.  And so we cheer him on!  "Go Gabe Go"!      



 


Mary Haupt
03/28/2013 5:53pm

I am always anxious to read your words and keep up on how Gabriel is growing and learning. I am certain that along with him being blessed with the perfect personality he has also been blessed with the perfect parents. You and Bert are Gabriel's biggest advantage in life - God has placed this precious little boy with parents who will give him every possible opportunity to manage his life and be an independent person. He is also surrounded by loving family and friends - please count your Maine family as being part of those who support you in prayer and positive thoughts. Love and hugs to you and your three guys!!

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Becky
03/29/2013 9:11pm

Thank you Mrs. Haupt! We are trying our best! I have many fond memories of spending time with your family....I wish you lived closer :).

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04/03/2013 6:15am

I love reading stories from other families with children born with LCA, especially those with the NMNAT1 gene mutation. Your description of Gabriel sounds so familiar to Shianne and I am glad that he has accepted the cane. I too found the difference in people's reactions once the cane was introduced but I am also very proud when I walk alongside her as I am sure you both are also. Keep up the good work.

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Becky
04/05/2013 4:24pm

Hi Colleen! Yes, I also like reading about other LCA families and how they deal with the different issues that arise!! It is also nice to have met you and some others at the conference in Philadelphia....it is funny that we happened to sit at the same table without realizing that we both shared the NMNAT1 mutation! I enjoyed reading your blog about potty-training.....it is something that we are going to try with Gabriel soon - wish us luck, lol!!

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