Jen spent a good amount of time at the pediatrician yesterday, getting an earful about quality of life. Jen won't share the details of the conversation with me because she knows I'll be knocking on this particular Cedarburg pediatrician's door, but Jen describes the conversation with words like "terrible," "awful," and "disgusting."
Apparently the conversation was elevated beyond conversation to the point where the pediatrician pensively, emotionally repeated herself, like she was involved in some kind of fight. It talked about Zoe's quality of life and Jen's quality of life and the quality of life of my family.
Moral debates happen. I'd love to get in one about life. But with your doctor? At the doctor's office? About my family? About Jen's quality of life?
For this particular doctor, Zoe has a death sentence. She has the "it" factor. Just like what happened on "The View" yesterday. Commentator Liz Trotta had a comment about Governor Palin's boy, Trig: "the image of dragging that handicapped infant around and having IT on stage has caused consternation in some quarters as to how tasteful this is"
Putting the best possible construction on Ms. Trotta's statements, it's likely it was a mishandled article. Or, she's single and never been around kids, and the kid is closer to a puppy than a human.
There. I tried.
But honestly, I wonder if Trig's an it. Not quite human because he's not like you and me. Zoe, too, according to the pediatrician. What is her quality of life? She's never going to ride a bike. Heck, she's- I mean it's - probably not going to live.
And if I've misquoted the pediatrician from Cedarburg, I welcome said pediatrician a wide open forum here. Perhaps here is a better forum for your condescension than in your clinic.
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Zoe is a GIRL and Trig is a BOY. It's a no brainer here. All life is valuable and precious, beautiful gifts from God. He is the author and finisher of this book, not the medical community nor the public opinion. These gifts from God are here to teach us about the true value of life, straight from the Creator's heart to us. They better start paying attention as I know we are. Give Jen extra HUGS today, and know this is in Gods Hands and He will prove Himself to be worthy of all praise.
ReplyDeleteLove, Laurie in Ca.
As long as you're enraged, you might enjoy this discussion around the so-called 'worship of retardation' that apparently is huge with 'devout christians.' Makes it hard not to characterise the other side as 'blood thirsty.' Yeesh.
ReplyDeleteYes, quality of life issues are incredibly complex but they are also incredibly personal. I assume your pediatrician was saying these things out of love and concern for your family. I hope.
Jen and Greg,
ReplyDeleteI have a sister with an EXTREME "IT" factor who wasn't supposed to live beyond age 5. Let's see, she will be 40 her next birthday. She's outlived her life expectancy almost 8 times!
She's paralyzed from the neck down as well as developmentally disabled. Yet she smiles radiantly when she recognizes family, caregivers, and friends.....she has been schooled to talk with her eyes by looking at pictures she wants to say.
She has more joy and peace inside than some have ever experienced in their lifetime. Who is to say about quality of life? My sister has beat the odds immensely and is quite happy....THANK YOU VERY MUCH!!!! Here's to a great life Jodi....my lovely big sis....
Just to throw my two cents in- I have my own personal "it". She's 17 and has trisomy 21. My "it" is the joy of our lives (family of 6). She has also taught me more about God and what is important in life than any other single person or thing in my life. I feel God gave her to us as a blessing and we received that blessing. Too bad for those so called "more intelligent open minded individuals" that would choose to kill or refuse the blessing God meant our "its" to be.
ReplyDeleteYou may have seen this already, but it is worth reprinting here. - Ted
ReplyDeleteDown Syndrome Children
By: George Will
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Jon Will, the eldest of my four children, turns 21 this week and on this birthday, as on every other workday, he will commute by subway to his job delivering mail and being useful in other ways at the National Institutes of Health.
The fact that Jon is striding into a productive adulthood with a spring in his step and Baltimore's Orioles on his mind is a consummation that could not have been confidently predicted when he was born. Then a doctor told his parents that their first decision must be whether or not to take Jon home.
Jon has Down Syndrome, a chromosomal defect involving varying degrees of mental retardation and physical abnormalities. Jon lost, at the instant he was conceived, one of life's lotteries, but he also was lucky: His physical abnormalities do not impede his vitality and his retardation is not so severe that it interferes with life's essential joys--receiving love, returning it, and reading baseball box scores.
One must mind one's language when speaking of people like Jon. He does not "suffer from" Down Syndrome. It is an affliction, but he is happy -- as happy as the Orioles' stumbling season will permit. You may well say that being happy is easy now that ESPN exists. Jon would agree. But happiness is a species of talent, for which some people have superior aptitudes.
Jon was born the year before abortion became legal and just as prenatal genetic tests were becoming routine. Almost all mothers abort babies who have Down Syndrome. Because of advancing science and declining morals, there are fewer people like Jon than there should be. And just in Jon's generation much has been learned about unlocking the hitherto unimagined potential of the retarded. This begins with early intervention in the form of infant stimulation. Jon began going off to school when he was three months old.
Because Down Syndrome is determined at conception and leaves its imprint in every cell of the person's body, it raises what philosophers call ontological questions. It seems mistaken to say that Jon is less than he would be without Down Syndrome. When a child suffers a mentally limiting injury after birth we wonder sadly about what might have been. But a Down person's life never had any other trajectory. Jon was Jon from conception on. He has seen a brother two years younger surpass him in size, get a driver's license and leave for college, and although Jon would be forgiven for shaking his fist at the universe, he has been equable. I believe his serenity is grounded in his sense that he is a complete Jon and that is that.
Because of Jon's problems of articulation, I marvel at his casual everyday courage in coping with a world that often is uncomprehending. He is intensely interested in major league baseball umpires, and is a friend of a few of them. I think he is fascinated by their ability to make themselves understood, by vigorous gestures, all the way to the back row of the bleachers. From his season-ticket seat behind the Orioles' dugout, Jon relishes rhubarbs, but I have never seen him really angry. The closest he comes is exasperation leavened by resignation. It is an interesting commentary on the human condition that one aspect of Jon's abnormality -- a facet of his disability -- is the fact that he is gentleness straight through. But must we ascribe a sweet soul to a defective chromosome?
Like many handicapped people, Jon frequently depends on the kindness of strangers. He almost invariably receives it, partly because Americans are, by and large, nice, and because Jon is, too. He was born on his father's birthday, a gift that keeps on giving.
© George F. Will
I use to think the same way that your pediatrician did, and then I had the honor of meeting Sebastian, my nephew. He was born with Trisomy 13 and blessed us with 28 days of "getting to know him". He taught our family about love, support, and living life to its fullest in those very short days. I miss him dearly. I check your blog often to see how Zoe is doing, and I pray for her daily. Her life is a testiment of love and hope, and should never be viewed as a burden. I hope the Pediatrician can open his/her mind to realize that very soon.
ReplyDeleteI stumbled upon your blog on my adventures reading up on Michael Henessey - the Ironman for Kids.
ReplyDeleteI meant to comment on your post about interviewing him, and how exciting what he is doing to raise awareness is for so many of us... but found myself at your most recent post here and just want to scream with frustration at that stupid doctor.
My own daughter was born with T18 as well, and sadly she was one of the ones who did not live long. Her value as a person should not be diminished by her diagnosis, she was a person.
Doctors just do not have all the answers when it comes to trisomy, and should never pretend to. T18 is as misunderstood today as Down syndrome was 50 years ago... There are children with this disorder who are living and thriving, learning, communicating, and smiling their little faces off and there is not a single doctor who has the right to dictate to anyone whose life qualifies as a "quality" life. Whatever happened to the oath a doc takes where it says "first do no harm"?
OK - stepping down off my soapbox. Just wanted to say hello and give a little love to Zoe from her fan in Colorado!
Corinne O'Flynn
Rowan Tree Foundation
I'm amazed at the reality of unspeakable things. From this doctor to those who would choose to "eliminate" blessings like Zoe before they even meet them. Unspeakable. And I am amazed at the reality of unspeakable love, faith, joy and LIFE that we are all given. And little precious Zoe is a true image of the latter. Greg and Jen, you all are in my heart and prayers. God is the Great Physician, and may He guide you to a peaceful decision about Zoe's surgery. Praise Him that He is the measure of our quality of life, since He is Life.
ReplyDelete"Jesus answered him, "I am the way, the truth, and the life. No one goes to the Father except through me." John 14:6