Wednesday, August 12, 2009

Frosted Flakes

I've been stewing for awhile about this great health care debate.

I will freely admit that parts of the current system need work. Even the best of private health care plans can be a challenge to navigate and sometimes fail the patients who need them the most. I will also admit that I have been blessed to have had decent and consistent coverage offered by my various employers thus far in my lifetime. Those admissions made, I just don't see how the plan in front of Congress can help fix what ails the system.

I thought I would steer clear of this topic on my blog because, well, it's just something I'm a little edgy and passionate about, but today I read something that really frosted my flakes...

Health advisor (and possibly eventual Health Care Czar) to the president, Dr. Ezekiel Emanuel has been a key proponent of this legislation and it's important to know his thoughts. He said this in January of this year: "When implemented, the complete lives system produces a priority curve on which individuals aged between roughly 15 and 40 years get the most chance, whereas the youngest and oldest people get chances that are attenuated."

My kids are all under 15. Hubby & I are over 40. Where does that leave us? Yup, outside the priority curve. Should the ER have denied my then 2 year old the surgery he needed when he shattered his elbow? Or my 4 year old the stitches she needed when she split her pretty little head open? Or my husband the medication he needs to keep his diabetes in check?

In November of 1996, that same individual is quoted as saying: "Conversely, services provided to individuals who are irreversibly prevented from being or becoming participating citizens are not basic and should not be guaranteed."

In November of 1997 I gave birth to a beautiful baby boy, our second child. We named him Patrick William; Patrick because he was scrappy lookin' and William after his father & great-grandfather.

In February of 1998, my husband and I were told to prepare for the worst...the loss of our son. We were told that his chances for survival were slim, but if he made it past his first birthday, then we could expect little from him as a participating member of our family. We were told he'd never walk, communicate, or care for himself. We were told that if we weren't planning a funeral, we should look into long term residential care in a "facility" for him. In other words, he would never become a "participating citizen."

In August of 1999, he underwent the same battery of tests he had 18 months before. Guess what? The 'extreme' brain damage diagnosed earlier had largely repaired itself and he was a wonderful, funny little boy with an inquisitive, teasing nature...who was learning to walk!

In the years that have followed, we've received as many diagnoses and prognoses for him as we have had specialists who poked and prodded. "They" call them "conditions" or "disorders" or "syndromes"; we call them "bonus features." (EVERYone has those, it's just his are more obvious and have names.) It doesn't really matter what the labels are, but I will share them with you: profound deafness, autism, spastic diplegia cerebral palsy, behavioral disorders, impulse control disorder, & developmental delays. He's had several corrective surgeries, numerous consultations with specialists, various therapeutic interventions, and lots of physical therapy.

In September of 2007, he figured out BY HIMSELF how to adjust the settings on our DVR--including closed captioning.

In October of 2008, he taught his teacher how to insert photographs into a power point presentation.

In November of 2008, he turned 11 years old. He asked for a chocolate ice cream cake with blue frosting and yellow candles. He got them.

In April of 2009, he wrote a hilarious book about a typical day in his life which revealed his unique sense of humor.

In June of 2009, he mastered the video & slideshow editing program on the family computer. He has produced a variety of DVDs--complete with disk menus, titles, ticker bar text, soundtracks, snazzy transitions and scrolling credits--that we play on the family DVD player.

It's August of 2009 and he's eagerly awaiting his return to school. He communicates with us through American Sign Language, he takes great care of himself, plays with his four siblings, enjoys helping with family chores. He identifies strongly with his fellow Deaf people and helps others learn to sign. He is an avid rule enforcer. He uses technology in incredible ways. Last week, after a year of recuperation, he traded his wheelchair for a walker and is making TERRIFIC strides toward walking on his own--again!

I can't WAIT to see what August of 2010 will bring for him. He is full of surprises and accomplishments and thoughts and plans...and we are only just beginning to scratch the surface of what he can or will do. We have NEVER set limits for this kid, rather we've let him find his own way and find his own boundaries. We have always allowed him to be our child first and our "bonus feature" kid second. Why should we change that course and allow someone (or someTHING) else to make those choices for him?

I'm not going to tell you that life with Patrick is easy. It's a day by day adventure. But life without him would be impossible. Sadly, I think that is exactly what Dr. Emanuel has in mind for families like mine. God gave our family this amazingly intrepid boy for His reasons...and the power to give or take should ALWAYS stay in the hands of God and NOT in the hands of ANY earthly government.