Greater Than One Percent

By Larry Pieniazek, User:Lar, (primary) (Picture taken by User:Lar) [GFDL (http://www.gnu.org/copyleft/fdl.html), CC-BY-SA-3.0 (http://creativecommons.org/licenses/by-sa/3.0/) or CC-BY-2.5 (http://creativecommons.org/licenses/by/2.5)], via Wikimedia Commons
By Larry Pieniazek
A few weeks ago I saw a  post by a mom of an autistic child in my blog feed.  She was livid about this news out of NYC –  about America’s super wealthy  “renting”  disabled persons for their Disney park visits to get them through the long lines.  What I find most ironic about this is that they rent-a-human because it’s cheaper than paying the Disney premium for the same exact (but honest) service.  So . . . they’re entitled to preferential treatment because they’re rich but shouldn’t have to pay retail?  I mean if you have to ask how much it costs, right?  Whatever.  Enough about that one percent, let’s talk about our one percent and greater.

When we look at the birth rates, roughly one percent of babies born on the planet have a heart defect.  Now, let’s shuffle in cystic fibrosis, metabolic disorders, chromosomal syndromes (Downs, etc.), muscular dystrophy, pediatric cancer, cerebral palsy, and the list of life-threatening and life-limiting disorders goes on, and on, and on.  In 2010, according to the CDC, there were 36,000,000 American families raising children with chronic health issues. THIRTY-SIX MILLION!

We, Wyvern Moms and families add up, and we are greater than the one percent.  So, should we be so blessed as to save some vacation days, qualify for Make-a-Wish, or have enough disposable income to take our fragile children to one of the Magic Kingdoms, it’s nice that Disney will let them cut in line.

The only other place where we get to cut in line is at the ER – seriously, tell the intake person your kid has half a heart and your butt never touches the waiting room seats.  Sadly, it’s only the serious medical professionals who take Congenital Heart Disease (CHD) so seriously.  It’s not just CHD; many of we 36 million families raise kids whose illnesses are invisible until it’s too late to do anything about it. Most of us slip pass the untrained eye.

Since Liam got off oxygen, very rarely does anyone notice anything “off” about him, and that usually involves a glimpse at his super-scar.  On cold days his blue hands or lips are sometimes obvious, but not always.  His stamina is limited, and his gait and posture are affected by his orthopedic birth defects, but those are things you don’t notice unless you know him.  These things do set him apart at P.E. and recess, so we try to downplay them in the rest of his very real life.

Liam, like many of the “Greater than 1%” of kids with life-threatening health issues, is entirely passable as a healthy able-bodied child.  So much so, that even I doubt the appropriateness of getting him a guest services pass at Disneyland.  That’s right, my kid circled life’s drain three times and endured a baker’s dozen trips to twilight under general anesthesia, and STILL I don’t  presume that he (or we) should be able to cut in line ahead of all the other people.  Given the odds, there are probably plenty of sick kids in that long line already whose parents either don’t know or doubt their kids would qualify for a line cut.

It’s a blessing and a curse when your child’s disease is hidden beneath at t-shirt.  I mean, Liam could flash his chest and put 50 Cent to shame, but he shouldn’t have to.  Liam shouldn’t have to prove his struggles or risks. Yet,  as long as he’s off oxygen, out of a wheel chair, and not obviously disabled to those around him, people would never guess that he’s making do with half of his cardiovascular system, palliated and struggling.

As a family, we owe no one an excuse and we have nothing to prove.  However, unless his condition deteriorated, I’m unlikely to visit Disneyland guest services to get Liam a pass when we take our first ever trip to Disneyland later this year.  I respect  that some families genuinely need that assistance, and I don’t begrudge them the help they need and deserve.  We could be in that position ourselves at any time.  We’re just not in that position right now.

For now, I will let Liam take breaks when he gets tired, like we always do.  I will plan our route like we did at the San Diego zoo to minimize his exertion.  I will have plenty of water on hand like I did at Sea World, and I will wait in the lines we’re willing to stand in so both of my kids can have the same experience as the other 99%.  I will enable Liam to do everything that he’s able to do and only take action when he is unable.  I will always count us lucky to be so blessed.

We might have special circumstances, but we’re not so special that we cannot be treated the same as everyone else.  Being treated the same as everyone else is why our family fought so hard in the first place and is the foundation of our national identity (Happy Independence Day!).

Liam has a 504 plan at school for the legitimate medical needs he has, so I don’t shirk that reality or responsibility.  Yet,  I think that most people who’ve genuinely suffered the fear and the stress of raising a child with a serious health issue have a greater sense of grace than of entitlement.  It’s tragic that the other one percent, the lesser one percent of great advantage and abundant privilege in these articles, has an excess of entitlement and a dearth of grace.

We are greater than the one percent (us > 1%).  We are the Wyvern.


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