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Sunday, March 24, 2013

Today's battle, tomorrow's victory

Many uncertainties surrounding Jude have subsided.  And, it appears an early fear of ours- Jude's brain development and abilities- were not affected by his microphthalmia.  Daily we observe him communicating verbally, moving around the house to explore his environment and enjoying his brothers' company.  We experience and rejoice in these blessings at every turn.

Admittedly, we feel as though we've dodged a bullet in this regard.  Judging by the tests initially administered on our son, we easily could have been dealing with additional diagnoses.  As it is, blindness is Jude's obstacle.  And while we feel fortunate in many regards, blindness happens to be a huge obstacle in our world today.

So, on one hand we take comfort in this, and on the other, we live with the reality that we must prepare a blind child to become an independent, self-sufficient man without sight.  Even though our son is healthy, I would consider our present state critical; where time not won is wasted.  Why so dire, you might ask?

Sighted or not, the first few years of a child's development are the most crucial.  It is in this stage that a child develops the basic abilities which off of all other abilities build.  Children in this time, largely through observation, will learn the social norms and rules of their environments.  No one can underestimate the power of learning through our visual experiences.

Now, take those observable experiences away, and here you have Jude's greatest challenge as he develops: learning how to interact and coexist with the sighted world.  Each morning, Joanna and I wake up aware of the opportunities held in a new day.  This means investing more time into our routines, just so Jude doesn't miss what is otherwise observable to you and me.

This is where the Children's Center for the Visually Impaired comes in.  A parent's love can only do so much, and among the hardest things Joanna and I have had to admit, is the fact that we alone are not equipped to provide Jude all he needs to flourish.  But like a parent depending on a physician to save his or her sick child, we lean on the CCVI and its expertise to uplift our Jude-boy.

A year ago I pleaded with you to consider donating to or joining our Trolley Run team because we had no clue what the future held for our son and his abilities.  Today, with a clearer understanding of Jude's diagnosis, I make an ever more impassioned plea; this time because I've seen his future.  And, if I ever doubted it before, I doubt no more that his life can be beautiful.  Jude's life can be full.  Truly, it hinges on today and this moment and the next.

Join us, won't you?

St. Jude: Pray for us.


Saturday, March 16, 2013

Just one moment

I've seen in movies where loved ones separated by death are again reunited for a fleeting moment in time; where life and death is no longer the barrier.  They meet only to share one more touch, one more kiss, one more "I love you."  One more anything is all that is needed to satisfy the other's memory for the rest of time.

I dream of Jude seeing me, even if only to know my smile, to have a reference when hearing me laugh, when I say, "I love you."  It's a fantasy of mine, that he and I will meet, with his mother and brothers, too, and we can all gaze on each other, knowing he's gazing on us- even if for a moment.  However unfair my dream is, I can't help but have it.

There's a beautiful YouTube clip of a young woman who hears for the first time at the age of 29.  Her reaction to the sound, even the simplicity of beeping, is so powerful.  Acknowledging sight and sound, although both being senses, are remarkably different, I can't help but think of Jude when I see the video. Not because I think there's a technology around the corner ready to give him sight, but because I wish there was.

We haven't spent many of our days as Jude's parents dwelling on things we can't control and likely we'll continue to focus on that which we can, but like most people, we've got our wish list, too.

St. Jude: Pray for us.

Please consider donating to our Trolley Run team. Simple and small donations build to greatness.  

Sunday, March 10, 2013

Finding the special

Sometimes the special has a way of finding me.

I was home Friday, while Joanna worked and the boys slept, and I turned PBS on to wind down for the night.  Attempting to do a couple things at the same time, the television content proved little more than background music at first.  Our local PBS was airing a concert of famous Italian opera singer Andrea Bocelli.

Bocelli's voice was great and I looked up to watch him share a duet with a female singer.  Mid-song the female singer kind of danced to the beat, as Bocelli just stood there motionless while she moved.  I thought that was a weird interaction between the two.  As I continue to watch, I keep noticing these "awkward" moments, so I decided to google him.

Forgive me for living the past 20 years under a rock, but I had no idea Bocelli, the man whom I understood to be among classical singing's elite, is also blind!  Admittedly I've never claimed to be a huge fan of his, nor classical music, aside from a general appreciation for all things beautiful.  Obviously my fascination was piqued.

It was a great feeling listening to a man, regarded among the best, whose blindness is considered an afterthought.  His voice and talent drew me in, rather than his disability.  To me, it proved what Joanna and I believe; the standard by which we judge Jude's excellence should be no different than any other standard of excellence.  Excellence is excellence.

Some further digging alerted me to the decision Bocelli's mother faced, while pregnant, when a physician encouraged the expectant mother to abort her child because he'd be born, likely, disabled.  Obviously she carried the pregnancy through to birth and her son, Andrea, stands as proof that disabilities equals not inability.

There are many more things I will never accomplish than I ever will, but no one will call me disabled, likely.  Jude, too, will find many things he is unable to accomplish.  In the end though, all we ask of our son, and it is what we ask of each of our children, is simply to accomplish one thing and do it, like Bocelli, excellently.

St. Jude: Pray for us.

Friday, March 8, 2013

Looking ahead

Today I was reminded, again, of how I am forever blessed to be Jude's mother.  Not for any particular reason, but every time I picked him up today and got a smile and a quick kick of the legs and jabber of excitement, I felt a sense of love and calling for my role as mother to Jude.

Parenting a child with special needs can be tough and yet ever so rewarding.  In many ways parenting Jude is the same as the way in which I approach parenting our older boys.  Love is the focus.  One difference, however, manifests itself in my concern for his future- in the things still so far off.

The thing is, parents of children with special needs are constantly thinking about the future for their child.  It is out of necessity and survival.  How will Jude do tomorrow?  How will Jude do next month?  How will Jude manage in preschool?  High school?  I find my mind jumping from tomorrow to his senior prom to his first apartment at a moment's notice.

People often remind me not to focus too much on the future and work in the here and now, which I do, often.  The truth is though, as any parent of a child with special needs will tell you, looking ahead is a necessity; today paves the road for tomorrow.  This moment and future moments really cannot be viewed separately; our goals for Jude in the long-term hinge today on our actions in the short-term.

St. Jude: Pray for us.