Thursday, February 28, 2013

Happy day, son.

My audio letter to our beautiful son, Jude, on his birthday.

St. Jude: Pray for us.

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.

Friday, February 8, 2013

Give me dignity

I used to go over to a childhood friend's house and play after school.  Elliot and I would run around building forts, capturing ghosts or climbing trees, like many little boys.  No matter what we did, his kid sister would poke her head into our action and we'd yell to Elliot's mom, "Get her outta here!"

Elliot's sister had Down syndrome. I knew little about the condition at the time.  To me, at the age of 6 or 7, she was just another annoying little sister.  This is my first memory of experiencing special needs in another.  I have since had several deeper experiences which include a close family friend, also born with Downs, and an extended service project among children with disabilities.  

What I did not know about Elliot's sister until much later was the story of her birth and the offer her parents received thereafter.  My mom told me Elliot's parents gave birth to his sister overseas, in Europe.  To their surprise, their daughter was born with the chromosomal abnormality.  They were saddened and confused.

Hospital officials came to their side and offered to help them out, thinking these parents, unprepared to raise a child of such needs, would be at a loss.  But, the offer for help was refused by Elliot's parents.  You see, Elliot's parents would not allow the hospital to take their daughter and send her away to be infirmed for life and never be seen by the family again- as though she never happened.

This story has stuck with me since I heard it and took on deeper meaning after Jude's birth.  It highlights a reality in our world today, where the disabled are sometimes viewed as the inconvenient, where children must fit into their parents' plans.  There are cultures today that would have cast our Jude aside, maybe to an orphanage or worse, because of the "burden" he'd be on his family or community.

And, it is with this in mind, that I remain thankful Jude was born to his parents, is loved by our family, and supported by our friends.  We will never face the decision Elliot's parents faced, but we continue to keep up the fight for his dignity to be recognized and embraced.  There's nothing to cast off here.

St. Jude: Pray for us.