Thursday, May 6, 2010

A life of value

I'm currently re-reading a book by Jodi Picoult called 'Handle With Care'. I think the book is intended to stir up emotions and pull at your heartstrings which, I assure you, it does successfully. (Which is, perhaps, why I'm reading it for the third time.) It is the story of a little girl born with osteogenesis imperfecta, also known as brittle bone disease. Her parents file a wrongful birth lawsuit, claiming that the defect should have been detected before birth and spared them the heartache and overwhelming expense of raising a child with such severe handicaps. A wrongful birth lawsuit implies that, if the parents had known during the pregnancy that their child would be born with significant impairments, they would have chosen to terminate the pregnancy.

There is the logical part of me that acknowledges the expense that comes with any handicap. Doctors, hospitals, prescriptions, medical equipment... the list goes on. These things are all very expensive, and not always covered by insurance. And, generally speaking, the more severe the handicap is, the more expensive it is. There are children born with severe impairments who will never be able to live on their own; who will be dependent on their parents as long as they are alive. What happens to those children when their parents die? Who will take care of them? How will they cover medical costs?

The logical part of me understands how a wrongful birth lawsuit could be viewed more as a medical malpractice suit (the doctors should have picked up on something), filed in order to get money for the child's healthcare; to ensure they will have a means of being cared for even after their caretakers are gone. I understand how the suit could be filed for money, not out of greed or with the honest wish that the child was never born, but out of desperation. When other options have been exhausted, a lawsuit of this type can be a way to pay for medical costs. The logical part of me gets that.

But the emotional, more sensitive part of me hears the words "wrongful birth" and cringes. How could any birth, any life, be considered wrongful?

The book mentions how, over the years, wrongful birth lawsuits have been filed, and WON, by parents of children born with diseases like spina bifida, downsyndrome and even... cystic fibrosis. I looked it up, I did the research, and these cases do exist. I was dumbfounded. Even if these cases were filed by the parents for monetary reasons with only the best of intentions, in order for these cases to be won, SOMEONE- the judge, or perhaps the jury- had to believe that these children were better off having never been born. To me, it's ridiculous to think that the life of someone with CF, my life, may be considered by some to be a life that's not worth living; that it may be too limited or perhaps too expensive to be considered worthwhile.

So, I've been thinking over the past few days: what constitutes a life of value?

I can't answer that question for everyone, but I'm fairly certain I've found an answer for myself. My life is definitely worth living. My life has been truly blessed. My life is full of love and laughter and beauty. I've been taught to love and trust and care. I've learned to have faith and believe in prayer. I've been hurt and I've cried. I've laughed and danced and played. I've fallen in love. I've created another life. I've lost people close to me. I've had schoolwork, jobs and friendships. I've felt the sand under my toes by the oceanside and heard the wind rustling through the aspens high in the mountains. I've roasted marshmallows over a campfire and fallen asleep under the stars. I've picked wild flowers and seen rainbows and smelled the rain. I've looked into the eyes of my baby girl and seen myself. I've loved and been loved by an incredible extended family. This life I live is so incredibly FULL. I honestly couldn't ask for anything more.

I'm so thankful that my parents, even after having a child born with cystic fibrosis, knowing they both carried the gene and knowing the odds of having more children born with it, chose to continue having children. I'm so grateful they believed--and taught me--that limitations and trials don't make a life insignificant. I'm also grateful to God for allowing me to experience all the things I've been able to, and for His constant blessings.

I suppose I have a hard time stomaching the idea that any birth could be a "wrongful birth", because I cannot imagine my own life being any more fulfilling.  

2 comments:

  1. I'll have to read that book. did you ever read my sister's keeper (also by Jodi Piccoult)? it's pretty good.

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  2. Amen.

    I firmly believe that everyone, no matter their situation, will at one time or another be put through some sort of personal hell. Nobody is exempt from that. Some of them are just more life-long and noticeable, like CF... but just because you AREN'T born with CF does not mean that you won't be stricken with your own deep, soul-wrenching trials. I have a dear friend of the family in her mid-30s who last year went into spontaneous kidney failure. Eventually they discovered that she has an incredibly rare genetic disorder. Now she is living on dialysis and desperately needs, but (for various reasons) may not receive a kidney transplant. Nobody knows how long she will be able to live. And two years ago... she was a perfectly healthy mom to three kids. And if it isn't a health problem - it's something else. Nobody is immune to some kind of major, heartbreaking, and often expensive life disruption.

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