With the start of the new year, I decided that it was time to get a website up and running for Gabriel.  I hope it will help keep our family and friends updated on our journey through blindness towards sight!! In April it will have been two years since we learned about Gabriel's condition.  He is now a confident, happy toddler, doing things that seemed impossible for him just a year ago.  We meet the challenges head-on, and know that Gabe will find his own ways of doing things.  We have learned that it isn't always the bigger issue of blindness that become a challenge, but the secondary problems that arise because of it. 
     I could describe the ups and downs of the last two years, but I would much rather write about how Gabriel is right now.  He amazes us!  He walks, jumps, and climbs around the house fearlessly.  As a baby we struggled to get him to move, but now he excitedly explores most places that we go to.  He has a signature "double-tap" that he uses as he trails walls, discovers furniture, or floors.  It is interesting watching him walk when we are out.  Every so often he stoops down to touch the floors or grass, or to finger the grout in between tiles.  He also likes to lick all of these surfaces, a habit which we are trying to break!  Gabriel's TVI (teacher for the visually impaired) wants to begin mobility training with him.  She actually measured him last week, and ordered his first cane.  I am excited because I know that a cane will bring more independence, but I know it will be a challenge getting Gabriel to undersand this.  He wasn't too keen on using any sort of "pre-cane", 
     One of Gabe's favorite things in the world is music!  We play a lot of music in the house, and he hums to all of it, whether it is a CD playing, us singing/playing, or one of the tunes playing from his various toys.  He knows them all, and hums on pitch!!  Gabe is also very rythmical.  At the age of one, he started walking around the house singing rythms, especially the dotted quarter note, eighth note, quarter note, quarter note rythm!  He even sang it in his sleep!  We sit at the piano together, and he hits the various keys, humming the notes as he plays them.  Being a musician, all of this has me stoked about his future musical abilities!  I guess if you have to be blind, you might as well have a mommy that can teach you music!  
     Sometimes it is easy to forget that Gabe is blind, as he has his own clever way of doing things,  It becomes more obvious when we are around other children.  At the playground I see kids, younger than Gabe, running around, chasing each other.  Gabriel is two, and I have never seen him run.  He walks fast sometimes, but never runs.  He has learned at such a young age, through many bumps and falls, that he needs to be cautious.  Although Gabe has become very social, it is also  difficult for him to play with children his own age.  I am hoping that this will get better as he gets older.  It is a blessing that Gabe has a big brother to play with at home.
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      I am convinced that part of the reason that Gabriel is doing so well is because of Oliver.  When Gabe was still a baby, we struggled to get him to roll over or sit up.  He screamed and cried.  One day Ollie went to  Gabe, roughly rolled him over , and basically told him how it's done!.  Gabe giggled profusely, and so began the sweetest of relationships.  Ollie brings craziness and wild fun into Gabe's life.  Bert and I try hard not to intervene when they play, praying that nobody gets hurt!  They have their own made-up games.  I like the one where Gabe holds on to Ollie's hips, as Ollie chugga-chugga-choo-choos around the house, yelling "Gabe is a caboose"!  Of course, there have been times when Ollie runs Gabe straight into a wall!  
     It is a unique relationship in that they never fight.  Ollie doesn't pout when Gabe pulls his hair or bites him,  He is very forgiving towards his little brother, and protective of him.  At Christmas, Oliver  observed that Gabe had less packages than him under the tree.  Gabriel is difficult to shop for, as many toys are geared toward a child's vision.  Ollie made me drive to Target, and HE picked out extra toys for Gabe's Christmas.  I was dumbfounded, but also very proud of Oliver.  Even though we talk often of how amazing Gabriel is, we are reminded on a daily basis how special Oliver is too! 
     I have learned to gage Gabe's quality of life by how happy he is.  So far I think we are doing well, since Gabriel is an extremely happy, silly little boy.  I, of course, still think about what he misses out on, or the things he struggles with because of his lack of vision.  
     About 80% of what babies learn is through vision.  They observe, mimic, and learn without much effort from their parents.  But what about a blind child?  When we first received Gabe's diagnosis, I kept wondering what his perception of the world was.  Did he even realize that there was a world beyond his playpen, beyond his carseat, or stroller?  I know that he learns every day about the world, but what does he really know?  It wasn't until recently that Gabriel learned that there are ceilings in our house.  Bert lifted him up for fun to touch the ceiling, and it was followed by a very intense laughing fit.  He always reacts in the sweetest ways when he discovers new things, yet those little moments can also bring about an over-whelming sadness.  I had never considered showing him the ceiling, because to me it is trivial, something I know is there because I see it.   A few days ago at the playground I spotted two manatees in the water.  There they were for everyone to see, but there was no way for Gabe to experience them.  These are the moments that still bring tears to my eyes, as there is so much to be experienced through sight.  I try not to dwell on it, but how many other things that we take for granted, is he not even aware of?     

 


Comments

Anna G
02/02/2013 3:57am

Very nice and touching read. Love to you all.

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Rickard Wahlberg
02/02/2013 4:43am

Thanks for your writing about Gabriel! As a grandfather I feel sad not beeing able to see little Gabriel and the rest of the family more than once a year. But now it's less than three weeks til next time. We are longing ...
Farfar & Akka

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Becky
02/02/2013 9:26pm

We are so excited about your visit, and cannot wait for Gabriel to play with you :). We are counting the days!!!!!

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Karen Cocker
02/02/2013 8:54am

Thank you for writing about Gabe. Your journey is so inspirational and I know it will be helpful for others out there too. You and Bert are such wonderful parents. Love you!

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Saunya Talley
02/02/2013 9:41am

I'm so happy to see this! Your family is always in our prayers.

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Mary Haupt
02/02/2013 11:25am

Wonderful and heart-warming! So happy to read about your beautiful boys! Prayers and love!

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Katie Taylor
02/02/2013 11:32am

I am so inspired by you and your family! Both your boys are so special and unique!

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02/02/2013 11:42am

Hi! I am, too, a mom of an LCA child, and I love to see other blogs about children with LCA. (I am also a close friend of Jennifer Stevens) :) Someday there will be a cure!!

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Becky
02/02/2013 9:28pm

Hi, and nice to meet you :) It is nice to connect with other LCA families.

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Bernadette Zeender
02/02/2013 12:51pm

Becky, I am thrilled to be able to share this journey with Gabe and your family. God has gifted you with 2 amazing children, and you and Bert are incredible parents. This inspirational blog will serve others in the best way. What a blessing! You all remain in my prayers.

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Amy and Joe
02/02/2013 3:51pm

Oh how I love this! I can't wait to follow your lives more closely..we miss you guys! What a beautiful job you have done sharing the joys and challenges of life with a child who faces special challenges. Your family is amazing! May God continue to bless all of you :)

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02/02/2013 10:23pm

Thank you for sharing your wonderful family. Holding you all in prayer.

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02/03/2013 12:27am

A great story, I remember watching Gabe lying on the floor sweeping his arms along the carpet at the meet and greet night at the LCA conference. I am the mother of Shianne from Australia who also was diagnosed with NMNAT1. Keep the blogs coming.

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Becky
02/03/2013 7:36am

Hi Colleen,
I remember you too! It is great to connect here. I remember being so inspired when you talked a bout Shianne, and how she didn't let blindness stop her :)

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Sonya North
02/03/2013 10:06am

I am moved by your site and can't wait to read about how Gabriel discovers the world! What a blessing he is and that he has you for his parents!

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Helen S.
02/03/2013 10:28am

Our family offers many prayers to St. Lucy for sweet Gabe. How very blessed he and Oliver are to have such strong, faith-filled parents. You and Bert are role models for all of us! I am so moved by your blog and look forward to what the future holds for Gabe. He will do amazing things! Our prayers and love are with you and your precious family. God bless you!

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Oma
02/04/2013 8:43am

I will never forget the day the Opthamologist gently shared the news that Baby Gabe had vision loss. It placed me in that painful moment, of not only grieving for my grandchild but also for my own child. And, so began the journey of how to care for, encourage, protect & stimulate a child that cannot see, but also the journey to find answers for a possible cure. We leave no stone unturned, no prayer unspoken, and no avenue unexplored. God has placed this precious child in the loving, capable hands of parents who can guide him on his path through life. I feel in my heart and soul, that one day Gabriel will also recognize us by sight! We eagerly anticipate that miraculous day, and pray fervently for its arrival. Much love and many prayers coming your way!

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Schaf :)
02/04/2013 8:31pm

We love you!

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Helen and Björn Wickström
02/04/2013 12:49pm

When we recently visited you we loved to see how you play with Gabe, and to hear him laugh so happily. We think you are such a fine family! We share your hope for Gabe's future possible cure. We send our love to all of you.

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victoria
02/04/2013 7:40pm

Wow your story is so similar to my families. my so Jaden who is now 7 has LCA gene unknown. we also did not know jaden was blind until a family member noticed his eyes not focusing. he also passed all his newborn test. it was very devastating for our family to find out jaden was blind I could not comprehend. he has grown into a very independent young boy. he loves music and is currently in karate and takes guitar lessons.

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Becky
02/04/2013 8:33pm

I LOVE that Jaden does Karate!! That is so inspiring. I often have wondered if Gabriel will be able to do sports.

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Becky
02/04/2013 8:46pm

I LOVE that Jaden does Karate! I have often wondered if Gabriel will one day be able to doo sports, so this is very inspiring :)

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Sherry
02/05/2013 12:53pm

My grandson has LCA. He is 17 months old. How do I go about getting him a teacher to help him like your son has? Is it through the school system? Your blog is very encouraging and I continue to pray for a cure as well!

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Becky
02/05/2013 10:13pm

Hi Sherry,
Our pediatrician actually urged us to get into therapy early. Gabriel's TVI (teacher for the Visually Impaired) is provided through the "Lighthouse for the Blind". It is a free service for us. She comes to our home and basically plays with him - teaching through playing! When Gabriel turns 6, he will be transferred into the school system, who also has a TVI. I'm not sure where you are located, but most states have a "Lighthouse for the Blind".
In addition to the TVI, we also have an Early Steps Provider. The Early Steps program is provided by our county and works with children with various disabilities. Blind children automatically qualify for this service, and this therapist also comes to the home. Lastly, we also take Gabriel to an Occupational Therapist once a week, to help him learn basic fine motor skills that he needs.
I hope this info helps!

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Janine
02/08/2013 4:40am

Thank you for putting your inspirational story on Facebook. I learned this week that my 4 month old baby Lachlan has LCA, we are still in shock and devastated by the news. I am also so worried how this will effect my 4 1/2 year old Joshua. Reading your story gives me hope that Joshua will indeed be the key to getting us through this. Thank you for sharing

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Becky
02/08/2013 10:42pm

Hi Janine, hang in there. Receiving that kind of news IS shocking and life-changing. Even through the grief, I was grateful that I was aware that there was a problem. At least you can now adapt your lives and find creative ways to show Lachlan the world :). It won't be easy, but with your help both boys will be ok!

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