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Plea from a family that’s been there

As a family we have been watching Terri Schiavo’s court-ordered starvation with great angst for her and her parents. So many questions, one certainly being, ” Is Michael Schiavo really the best person to be her guardian?”

Does he have motives here other than Terri’s best interests? Hmmm.

Recently, Mr. Schiavo made statements that confirmed in my mind that he is creepy and ghoulish. He stated, while his wife is valiantly fighting for her life after 11 days without food or water, that he would have an autopsy performed. He hopes to confirm what he believes, that her brain tissue is so damaged that she is truly vegetative. Why does he feel the need to prove this? Is it possible that he has seen Terri react to her family as her family and priests passionately insist?



Michael Schiavo, here’s a thought for you. I doubt whether dissecting Terri’s brain tissue can accurately measure the level of receptive language and attempts to communicate Terri had while living. Case histories are full of stories of individuals whose brain anatomy doesn’t match up with their potential. Point being: there is a difference between the brain and the mind.

Our experience with our son Dustin illustrates this.




When Dustin was born 25 years ago he was diagnosed with severe microcephaly. From his evaluation: ” The CT scan shows small head, slightly enlarged posterior horns and confluence of the lateral ventricle, a small right temporal subarachnoid cystic area and some increase in the subarachnoid spaces throughout the intracranial space” The pediatric neurologist we saw was renowned and experienced. Based on the anatomy of Dustin’s brain, he told us that Dustin would “never recognize us from a tree”. We were told to institutionalize Dustin.

Later, when it became apparent that Dustin could not obtain enough nutrition in order to survive, we were told to “do nothing”. We were told that his quality of life would be so poor that this would be an appropriate action. We had to fly out of state from Ohio to California to find a hospital that would offer him treatment. Thank God we only had doctors in our way, not judges.

Nothing in the radiological picture of Dustin’s brain would have predicted anything other than the prognosis we received when Dustin was a baby.

Nothing would have predicted the following either:

Dustin would enter kindergarten in a regular classroom. While a student he would point to letters on his letter board and write an amazing story about himself. The title,”Dustin’s Trip to Space” tells of his life and his hopes and dreams.

Dustin would the next year be tested by a psychologist at A.I Dupont Children’s Hospital. From this report these comments, “Dustin’s performance on the Columbia yielded an age deviation score, which could be likened to an I.Q score , which fell in the very superior range. This would indicate that Dustin is very advanced in his intellectual ability, it would also indicate that his thinking and reasoning ability far outstrip most children his age.”

Dustin would write stories and win awards during his school days. Dustin would enjoy life, his family, home, his In and Out burgers, his motorcycle and sidecar, the Simpsons, Dennis Miller, and Giants’ baseball. Dustin would, today, input via morse code into his computer, and describe to us his feelings about Terri’s court ordered starvation.

The mind and the brain are two different things. Terri’s parents are saying that Terri’s mind is aware of them. I have heard, in the last week, Terri’s priests, her friends, and former nurses all say the same thing. They are desperate to provide her with life affirming care. We pray for Terri.

I note with horror that the Judge Greer, the judge who continues to insure that Terri not have food or water, rationalizes that starvation is permissible because Terri will never recover. Dustin has severe cerebral palsy. From this he will never recover. Would this mean that he should be denied food and water?

I close with part of a piece that Dustin wrote when he was 8. He won an award from the International Reading Association and an award from his school district for this piece. May Dustin’s advocacy be heard and helpful.

If I were president … by Dustin Webb, august 1988

If I were President I probably ought to kiss babies for publicity. I sometimes would find this fun. Babies just need pacifiers. I probably would need a better policy with people over two.

Food should be available so the homeless can eat. Homeless people feel like hunger sounds funnel through their painful lives. Food can postpone bad fears. Food is very fundamental to my platform.

Family seriousness boasts family pride. Families provide shelter. Now is the time for helping families to be hastily ballooning to their family trees. Family strength is fundamental to my platform.

May God bless the Schindler family as they desperately try to help Terri.

ooo

Anne Webb lives in Nevada City with her husband and son Dustin.


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