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!


02/18/2013 7:40pm

You are doing a wonderful job learning how to raise a child with different needs! You have a happy child that loves adventures and new experiences, and an emotionally stable child that loves to cuddle and be held. The days may seem neverending and issues may appear impossible to solve, but the bottom line is that you both are doing a fantastic job raising a very normal toddler, who is learning to do things "his way". What really matters is that Gabe is happy, and it is quite obvious that he truly is! I salute you for your strength, love and perserverence!

03/03/2013 2:50pm

I am so amazed at how you and Bert have adapted to the needs of Gabe, while at the same time being there to make sure that Ollie gets all the attention that he deserves. You seem to have the perfect balance. I applaud you both!!! God's love surrounds your family with patience, joy, and happiness as each day gives you so much to be thankful for on this journey called life.

Carol Irwin
07/09/2014 9:30am

What beautiful parents you are! I just discovered your blog today and am so touched by your journal entries - what a gift they are to your children - and to us who are sighted, yet often so blind to the beauty of the world around us! Thank you for sharing your parenting journey and opening our minds and hearts. God has obviously blessed you with sensitivity, commitment, strength, and courage. May the dear Lord continue to abundantly bless you as you grow together as a family. Love and Prayers, Carol


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