Surgery #.......who knows?

I have no idea how many surgeries our girl has endured but I do know that the glaucoma procedure she had yesterday was her 14th glaucoma procedure in her ten years.  Angela had an Ahmed valve implanted in her left eye and she came through like a champ, as always.  There are some pretty scary potential complications with this procedure but so far the results are very promising.

For the past two days, Angela has traveled by wheelchair again.  Her vision is limited right now, and she is a little unsteady on her feet.  And then there is the cast on her right leg.  I have been struck by the public response to a child in a wheelchair.  And, to be honest, with a patch on her eye, a splint on her wrist, and a cast on her leg.  Angela used a wheelchair for quite a while after her brain surgery but I had forgotten.

When people see us, they move to the side to let us pass.  They allow us to enter the elevator before them and they hold doors to let us go through.   They smile extra hard when you catch them looking. And then, there is the look in their eyes.  Pity.  Every. Single. Time.  I am not the type to be confrontational in public (and besides that, they mean no harm to us) but if I were, this is what I would say:

"Please don't pity me.  I know, you see a mom who has been delivered a load of burdens beyond her share, but that is not me.  Instead, I have the privilege of being seated in a front-row seat to a miracle.  I have watched a child, who was delivered a death sentence, defeat her fate and be saved by a drastic, unimaginable surgery.  I have been witness to a child who knows no burden, despite her undue challenges.  She is a vision of what life would be like if we knew we could not fail.  We would try anything and everything!  Although she rages at those who love her most, she is not defeated and she smiles through every procedure.  She is polite, and grateful beyond measure, to those who care for her in clinics and hospitals.  Stare if you must, but do not pity us,  or her."

It is interesting, the perspective of a parent whose child has extraordinary needs.  Contrary to popular belief, we do not want people to feel sorry for us.  Oh, we want and need the disabled parking permit.  Have you lifted a fifty-pound wheelchair?  Multiple times in a day?  At the end of the day, though, we want what you want.  We want our kids to be happy and healthy and to live a full life. We do not want

pity, though, because we share a secret.  Although we wish our children did not have to struggle, we also know that we have met some of the most caring, compassionate people on our journey and that our children are wise beyond their years.  They know the value of their days, and they do not take a single day for granted.