Tuesday, June 5, 2012

An adjustment

May was a busy month with trips and doctors appointments to fill the time.  Jude continues to progress quite nicely through his therapies and he is on track for his June 20 surgery to remove the cyst in his right eye.  He had initially been scheduled to receive his first set of conformers a few weeks back, but because of the surgery, they have been pushed off to be done during the surgery.

Conformers are small space-fillers to be placed in his sockets because his natural eyes are simply too small, therefore his face would not form properly.  I liken them to braces for the teeth.  As your face changes, the conformers are replaced with new ones to ensure the proper form of the facial structure.  Because we are unsure of light perception, the conformers will be clear and thus an adjustment for us to get used to seeing.

Speaking of getting used to his conformers, to many Jude looks like a baby who sleeps all the time.  I can't tell you how many times we get asked how we can tell if he's sleeping?  It's so much easier now because we are learning his ways more and more and he is much more active during his awake hours.  When he tries to open his lids is when most people can see that there's something not quite right with his eyes.

The conformers will likely enhance this noticeable reality.  I am really struggling with being self-conscious for him.  When I am around friends and family who know he is without sight and understand his condition, I am comfortable, certainly.  But, when we are out in public and around strangers, I feel different.  Joanna and I were saying the other night how much we'd simply like to walk into every conversation, with everyone we encounter and say, "he's blind."  I just don't like the idea of someone looking at him wondering, what's wrong with that kid's eyes?

I know that I will get over the self-conscious nature of being out in front of new people, but it is something I am at least admitting.  Don't get me wrong, I'm not ashamed of him in the least.  We are proud of Jude.  I just don't like the idea of people trying to guess his condition.  That's human nature and certainly not a bad or mean-spirited thing to do, but I'm still getting used to it.

St. Jude: Pray for us.

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