This weekend we celebrated Oliver's 6th birthday, and Bert and I both agree that he tops the list of best Valentine's gifts ever!  Although he wasn't born until the early hours of February 15th, we began our plunge into parenthood on Valentine's Day, 2007.  Life would never be the same!  Becoming a parent opened up parts of my heart that I never knew existed, and I learned to love in a completely different way.  You get to know the full spectrum of emotions, ranging from absolute joy to utter frustration, and Ollie has frequently brought us from one end of the extreme to the other!  With the addition of Gabriel and his eventual diagnosis of LCA, we also learned the true meaning of grief and worry.  But this immense grief has also brought us an indescribable joy.  It seems like the one extreme goes hand in hand with the other.
     As I thought back to Ollie's baby and toddler years this past weekend, I couldn't help but wish for the normalcy we had back then.  I don't want Gabriel to have to face the challenges that lie ahead of him, and I wish I could make them go away.  Instead of planning outings with other parents and their children, Gabe and I keep a 3 day per week therapy schedule.  He has an occupational therapist, a teacher for the visually impaired, and an early steps interventionist.  We have been keeping this schedule since Gabe was about 8 months old, and he tolerates the sessions pretty well these days.  He even has fun!  It took us a long time to get to this point, however.  The OT sessions were especially stressful, as they take place outside of our home.  The office is made to put children at ease.  The walls are colorfully decorated, there are cartoons playing on TVs, and the therapy rooms are filled with fun activities and toys.  All of this was lost on Gabriel, however, and he was genuinely terrified every time we went there.  It is emotionally draining listening to your child screaming for an entire hour, week after week, and month after month.  I often wondered if we were doing more harm than good in bringing Gabriel to these sessions, but at least I was able to pick up ideas from the therapist to use with him at home.  Thank goodness we have FINALLY come to the point where Gabe somewhat enjoys OT too!
     All of Gabe's therapists, and Bert and I are always amazed at how well he is doing despite such a big handicap.  He is reaching all of the developmental milestones and in a way seems advanced in some areas.  At the same time, we struggle with certain basic skills.  Getting him to drink anything instead of nursing me was a huge challenge.   We were never able to get Gabriel to drink out of a sippy cup, or use a straw, for example.  It is one of those things that would be so easy if you could just  "show" him.  With assistance he is now able to drink out of a regular cup, and I've decided that that is the end goal anyways!  Gabe also doesn't bite off food.  I didn't even notice it until recently when I decided to give him an entire cookie to eat instead of breaking it into bite-sized pieces.  What did Gabe do?  He broke it into bite-sized pieces, himself, and then ate it.  It was one of those "duh" moments, since Gabriel obviously has never seen the rest of us eat. 
     We are fortunate that Gabe doesn't exhibit many of the problems that other blind children exhibit.  He has never been overly sensitive to different textures or sudden changes in environment.  Things that used to be a problem for Gabe, such as noise sensitivity, are barely even noticeable anymore.  Gabe craves different experiences, and we try our best to provide them.  It is fun to see how something trivial to us can bring such joy to Gabe.  I remember when he first discovered a wine bucket filled with ice on the Thanksgiving cruise my family took.  He repeatedly plunged his hands into the cold bucket and giggled uncontrollably.  He may have been oblivious to the beautiful, vast ocean right outside the window of the dining hall, but he did discover ice for the first time!
     I still wish that Gabriel could experience everything that we are able to experience.  He mimics many noises and sounds from our environment, and I can "show" him what many of these things are.  When a car alarm goes off, he mimics it and he knows what it is because he's been in a car before.  When he hears dogs barking, he barks and he knows what a dog is because we have one.  But the other day we were at the park and we heard geese.  He mimicked them, but I had no way of showing him what a goose is, or any other bird.   I could tell that he was curious by the look on his face, and it makes me sad.  
    There is also something sad as the seasons change and the holidays and birthdays  go by.  We are approaching Easter, and Gabriel won't be hunting for eggs with the other kids.   By the time Ollie was two, he pretty much understood the awesomeness of every holiday, but I don't think Gabe understands any of it yet.  For me, Christmas was the most difficult.  It is a beautiful time of year with the decorations, the lights, the tree, the presents.  The whole world seems to shift from one week to the next, and all the children's eyes are filled with excitement.  For Gabriel it was like any other time of the year.  
     I often feel like i am failing in this situation that we find ourselves in.  However,  as I sifted through the jumbled up thoughts of my sleep-deprived mind to write this post, I find that we are doing well.  Afterall, for the most part, the four of us are still smiling and happy.  So for now at least, I choose not to worry so much!
         
      !
         
       
         
     

     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.

      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?