Tuesday, February 26, 2013

The burden

Jude will never see.

I will forever know what Jude will never see.

Matt and I, Jude's parents, will always know what Jude is not seeing.  We will look out the car window and point out a fire station and know that he will not see it.  We will go for walk on a beautiful spring day and know that he will not see the blue sky and blooming flowers.  We will see the wall that he runs into.  We will see how other children react to his blindness.  We will always know what Jude is not seeing. 

Writing these words brings tears to my eyes, but that is the burden of parenting a child with special needs. 

We met a family with a daughter, now grown and in her 50's, who is blind, for an evening when Jude was 2 months old.  Her mother spoke openly about raising their daughter without vision.   She also pointed out the reality of being a parent to a child with special needs.  "It will always be harder on you than it will ever be on Jude," she said. 

And because of this, fighting for my son to fully experience the sighted world like our other boys, while illogical to some, is as much about me as it is for my son.  Jude will never see a baseball game, but you better believe he will be every bit a part of the Nickson family MLB stadium tour.  And he will never drive a motorcycle, but you better believe he will be riding in Grampy's sidecar. 

Jude might not experience activities the way you and I would, but he will experience them, and not just for himself but for his parents.  For his mother, who needs him to be a part of these everyday activities and extra special activities because I know- I know what he'd be missing.  

St. Jude: Pray for us.

As we get closer to the Trolley Run, please consider a donation to our team in support of the CCVI and all of these special experiences.  And, Feb. 27th we will (weather provided) hold a fundraiser at the Chipotle on Main St. near the Plaza.

1 comment: