It has been quite a while since I last posted, as life seems to have a way of navigating me into new and unexpected directions.  However,  given that October is blindness awareness month, it seems like the perfect time to update the blog!
     As many of our friends and family know, Bert and I are expecting our third baby in January, another little boy.  This baby was very much wanted, despite some people's disbelief that we would "risk" having another child.  Every time we are pregnant, that child has a 25% chance of being blind due to LCA.  Dealing with blindness isn't easy because of obvious reasons, but it doesn't mean that you can't have a happy, fulfilling life.  Our little Gabriel has taught us that,! 
     Throughout this pregnancy, Bert and I have been prepared that baby boy #3 could have LCA,  Given that I know first hand that things can go wrong, I have been cautiously optimistic as the baby grows and develops, hoping that he is healthy, and trying to convince myself that lightning doesn't strike in the same spot twice.  Unfortunately, in August we were "struck" again with heart-breaking news.  Our little baby was diagnosed with spina bifida, a very serious defect of the spinal cord.  Even as I write this I don't understand why this is happening.  The same thoughts run through my mind.......I am healthy, I took my vitamins, I don't smoke or do drugs, etc., etc., etc.  At the same time, Bert and I have already fallen in love with this child, and despite our own uncertainty about our future, we look forward to meeting him.
     Because of the extra testing I had to undergo, due to
his diagnosis, we were able to confirm that the baby is most likely NOT blind, and this has given us some peace!

     All of the stress with the baby has unfortunately been taking place during a very critical transition time for Gabe.  Gabriel will turn 3 on October 29th, and this marks his transition from the early intervention program into the public school system.  To receive Braille instruction, Orientation and Mobility training, and other services he might require, he will need to be enrolled in school.  This transitional process has in reality been going on for months now, as Gabriel has been put through mandatory evaluations leading up to his birthday.  
    I am often frustrated by the process we are going through.  The standardized tests/evaluations that are used to evaluate Gabe do not accomadate for vision impairments.  The one exception is the Lighthouse (services for the blind), who uses a test designed for blind children.  The other evaluations test for all areas of development, but assume the child has vision.  There are just certain tasks that Gabe cannot complete or doesn't want to complete due to his blindness.  This includes coloring with crayons or stacking blocks vertically.  He will stack legos in a tower, since they interlock.  He doesn't complete the task with blocks, however, which tests a child's visual fine motor skills, because "line of sight" is used to do this..  This is why I get frustrated, since Gabriel scores poorly most of the time, although we are always told how smart he is.  The testing that is meant to help us assess Gabe's progress seems in many ways inaccurate, and I am left wondering if we are teaching him properly. 
     Some of the areas that Gabriel needs help with are blatantly obvious, such as certain self-help skills and feeding skills.  Gabe can get himself undressed, and can almost get himself dressed.  He easily finger-feeds himself, but the use of a spoon/fork is a challenge.  Surprisingly, Gabe can bring a spoon independently to his mouth.  However, the spoon is empty most of the time.  The scooping process of filling the spoon with yogurt or apple sauce, for instance, has been tricky.  Gabe has no way of knowing if the spoon actually has food on it, so we help him scoop and then he brings the spoon to his mouth.  Many of the fundraisers for the cure of blindness are a variation on a "Dining in the Dark" event.  As I have thought about organizing a fundraiser, this event hits close to home, as I personally see how challenging it is to complete a simple task of feeding oneself when you are blind.  Imagine trying to enjoy a nice steak dinner while blindfolded!!
     As we anticipate the upcoming changes within the next couple of weeks, I am left both nervous and excited.  I am excited that Gabriel will have the opportunity to socialize with children his own age, and maybe make some friends!  I am extremely nervous, also, since Bert and I have little control over the process.  We still do not know which pre-school Gabriel is assigned to, and we do not have control over this decision.  With our older son, Oliver, we chose when to send him to school, where we would send him, and we had the freedom to visit his school and meet his teacher beforehand.  These little things seem like luxuries now. 
     Gabe will be mainstreamed, which is what happens for most blind children, unless you are fortunate enough to live near a school for the blind.  The classroom teacher will not be a trained "teacher for the visually impaired" (TVI). A TVI/Mobility Teacher will be assigned to visit Gabe during school on a daily basis, but only for 1-2 hours per school day.  This isn't so worrisome for preschool, since Bert and I intend to only send Gabriel 3 mornings a week.  I do have concerns about this set-up as Gabriel reaches elementary school, however.  When I consider that he will only have around 2 hours of specialized help during a 6-7 hour school day, it makes me wonder how Gabriel is supposed to succeed and become literate?  The more I think about this, the more I realize that Bert and I need to become Braille literate.  This way we can help Gabriel learn the skills he needs to be successful.
     As I have learned these last several years, we will take things one day at a time, meeting the good and bad as they present themselves to us.  It is really the only way to deal with certain situations, so we will hope and pray for the best as Gabriel starts this next chapter of his life.  We have been blessed to have him to ourselves these first couple of years.  Now we will let him loose on the world in small doses!  Watch out - here comes Gabe :) !!!



10/12/2013 9:45am

The happy, bubbly personality that Gabriel has is all the proof you need that he is well-adjusted and in love with life! This is a tribute to your mothering skills and your patience, but also to your faith that God gave him to you for a reason. He belongs in our family and to us! We love him dearly and learn daily to "see" life his way; Gabe's way! What a gift he is! Love & hugs!

10/12/2013 9:56am

Thank you Mama!! Gabe is a happy little guy - can't believe he's ours :)

10/12/2013 11:18am

This must be so difficult at times, Becky.. sending big hugs!!!! May you and your beautiful family continue to be filled up with strength and may your love, support and bonds grow even stronger.

10/12/2013 11:53am

Thank you Mary :)


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