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Life Arts    H3'ed 6/1/09

Death Sentence

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I was standing in my daughter’s bedroom, my hands covered in feces.  Her new adult diapers had loosened at the top and slid down a few inches along with her slacks towards her knees.  She was sitting on the carpet, smiling, playing with her toys, oblivious to the urine and bowel movement that had leaked out of the slipped diaper and painted her skin, clothing, and rug in odoriferous  yellow and brown.  For the millionth time in the past 17 years, I found myself thinking, “my darling little girl, I so wish you were normal.”

She giggled as I wiped her clean; obviously she was feeling more comfortable, even if she didn’t understand why.  I had carted the BM in my right hand to the toilet and wrapped the dirty diaper in a plastic bag to deposit in the trash.  Removing her clothes without spreading the mess while she waved hands and feet was moderately challenging.  Removing the feces from her clothes, and then the carpet, was much more so.  Finally, clean and happy, she sat back up and resumed her enthusiastic interaction with the colorful infant piano that lit up and emitted music with every touch.

As I always do, I washed my hands for a long time, over and over, even scrubbing under the nails.  And yet, as always, no matter how long I wash, the smell of feces takes longer to fade.  And so, I wash them again, and again.  I will be feeding her soon, and I don’t want the pureed food that slides out of her mouth on to her bib to risk invasion by E. coli.

Are you still reading?  Not driven away in disgust?  I commend you.  Most of my friends with 17-year-old daughters are accompanying them to college interviews.  I am cheering that my young lady has learned to drink from a cup I hold to her lips.  I have written, even on these pages, of how much we adore our daughter, how grateful we are that she is experiencing a healthy and happy life, how she has taught us the meaning of unconditional love.  All true.  But I haven’t written of the years and years of sleepless nights, the doctors’ visits—and bills, the sacrifices we her parents, as well as her siblings, have made so that we can care for her as best as possible.  Because of her natural tendency to “speak” with loud grunts that disturb onlookers; family dinners at a restaurant, movies, and other family activities are limited to the few occasions when we can find the funds to hire a sitter for a few hours.  So we can go to our jobs, childcare for our young woman (who, if normal, could have now been a babysitter herself) costs us more than tuition at a tony private university, year after year.

The hardest part of our challenges has been the relative isolation we have experienced since our daughter’s birth.  We watch other families partner on excursions with a tinge of envy—when we do accept an invitation, only one of us can accompany our “normal” children, as we cannot entrust overnight care for my daughter to a stranger—or afford the cost.  Still, we have worked hard to provide as typical an environment for our other children as we can—sometimes with the kind piggybacking of our youngsters on another generous family’s adventures.   And yet, despite the kindness extended to our “normal” children, my daughter is never a recipient of such invitations.  She is beautiful, sweet, lovable, and frightening and upsetting to those whose world does not include the term “special needs”.

I will not speak in this essay of the enormous value for families with special needs children and adults of a safety net, of a society that supports its citizens with disabilities and their caregivers.  My theme here today is even more harsh.  My hands still bearing a fecal scent, I opened my laptop to see the news story of the assassination of yet another physician—one beloved, faithful, and caring; a father, grandfather, husband, and medical colleague—who performed late-term abortions.   Murdered in cold blood.

I do not like abortions.  I am not “for abortions”.  But I am pro-choice.  I am for providing people with ways to prevent unwanted pregnancies, including emergency contraception after unprotected intercourse.  Preventing unwanted pregnancies is the best way to prevent abortions.  (Unbelievable how many of the most radical anti-abortion advocates also oppose access to contraception and the effective prevention of unwanted pregnancies.)

Most women who do choose to terminate a pregnancy do so within the first trimester—or early in the second at the latest.  When a woman or a couple proceeds with a termination of pregnancy late in a gestation, the most likely reason is that there is a serious medical problem that will interfere with the health and life of the fetus, or, occasionally the mother.  These anti-abortion radicals would like to see a world in which a mother dies, condemning her by their outsiders’ perspective that her own life is superseded by the fetus', fed by her womb.  Or, they would like to see a world where severely damaged fetuses are born, only to die struggling to eat, digest, or breathe in their first few days, weeks, or months in a $20,000/day neonatal ICU. 

Yes, children and adults with Down syndrome and other genetic syndromes often live happy and productive lives.  I myself would not consider terminating a pregnancy where a baby would have a chance to live a reasonable life, even if the life was not what we might consider “normal”.  However, conditions such as anencephaly, where most of the “intelligent brain” has not developed, or other birth defects may have a prognosis that precludes interactivity or long-term survival.  Prohibiting or preventing late-term abortions after a critical medical issue has been discovered forces a family to accept and deal with the devastating tragedy of a severely affected infant that could bankrupt their lives, emotionally as well as financially, for the rest of their lives.  And, interestingly enough, many of these “you must deliver that baby” advocates are opposed to any publicly-funded programs to help support the mandated children and their struggling parents.

My own daughter is genetically normal.  I, as an expectant mother, “did everything right”.  No alcohol, caffeine, raw foods; I ate a healthy diet and took my vitamins; I rested as my doctor ordered.  Unfortunately, my obstetrician misread my prenatal sonograms and did not pick up that my little girl was not growing normally towards the end of my pregnancy because half of my placenta had clotted and “died”.  Her severe to profound retardation was due to oxygen deprivation from the malfunctioning placenta that he missed.  Had he discovered the problem during my pregnancy, I am convinced he could have taken steps to improve my daughter's outcome.  And had I known that there was a chance she might not be normal, I am convinced I would have opted to continue the pregnancy to the end, hoping that any brain damage would be minimal.  But, if her case had been different, and the doctors had told me that the lack of oxygen had been so severe that her brain could not recover, I might have considered late-term termination rather than face a lifetime of caring for an unresponsive child.

None of us knows how we will react when faced with such choices.  My husband and I have found a strength we didn’t know we had to be able to care for a “baby” for 17 years.  Many others could not do what we’ve done, and, what sometimes in the dark of night and the stench of feces we are so weary of doing—caring for a lifetime for someone who cannot care for herself.  Every child should be welcomed into this world into loving and caring and capable arms.  But that portal is only guaranteed by “choice”—the alternative, forced gestation and delivery, is, can be, both figuratively and literally, a death sentence.

 Life in prison should be reserved for the doctor's murderer, please. 

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Jill Jackson is a practitioner of kindness and common sense. Unlike her cat, she prefers to think out of the box.

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