Mom the Advocate

At the beginning of last week, I thought my schedule was going to be a straight-forward.  So I was feeling pretty good about getting work done and keeping up with the kids, etc.  Ha!  I should know better by now.  Something always comes up.  When will I learn?  Or rather, when will I accept this?  If you don’t know me well, you may not understand that I like to be in control.  So unexpected changes in my schedule are not usually welcome.

This time, the complication that stressed me out was a trip to a retina specialist for my 8-year-old son.  He has a rare eye condition that we’ve been following since birth.  So going to this specialist in Boston is not new.  In fact, he’s an old pro now at having his eyes dilated (always fun – not!) and doing all the tests.  Anyway, this was an unplanned visit prompted by his complaints of blurry vision.  As the doctors had warned us that fluid might develop in his eyes again as it did before he was 2-years-old, we knew to bring him right in to have  it checked.  The first time this happened, we had no idea as he was too young to communicate a change in vision.  This resulted in permanent scarring in the center of his eyes and consequently, decreased central vision.  Needless-to-say, his report of a change/decrease in his vision was alarming.  The specialist’s reaction and concern alarmed me further and it was the most difficult doctor visit I’ve experienced to date.  He indicated that his recent blurry vision was likely due to the loss of vision receptors relating to the scar tissue.  There was no clear evidence of change seen on the various tests and it’s unknown if further deterioration will occur and when/if his vision may be impacted further.

So that’s the bad news and it made for an emotional Mother’s Day weekend.  We spent the weekend trying to digest the news, envision the future, and stay positive for the kids.  Meanwhile, we were anxiously counting down to the 2nd visit to Boston to see another specialist.   The good news is that Monday’s visit – to a pediatric ophthalmologist – went much better.  Although we were not sure refraction (glasses) would help, the eye tests proved that glasses will help quite a bit, at least for now.  Woo hoo!  Cameron is excited about the glasses, which we picked out on the way home, and we are relieved.  Still guarded, but pleased for now.  You can’t worry about what might happen, right?

Overall, this “crisis” has reminded me of my most important job: Mom.  In particular, I need to be the best advocate I can be for my children.  Sometimes this is easier than other times.  It’s heartbreaking when I cannot fix one of my children’s problems – like Cameron’s vision – and can only help them deal with the issue.  I much prefer the little boo-boos that I can still fix by kissing them and perhaps adding a band-aid.


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