short excerpts...other writings...upon occasion or as prompted...
The tiger in the water? A representation of my life -- spirit and environment!


Friday, January 29, 2010

Stealing Doah

Yesterday, by request, I posted an excerpt from my book, Blest Atheist, on the Clan of Mahlou site about how many years ago Doah was dying at Renboro Hospital (name changed) and with Doah's pediatricians' implicit consent (not explicit -- he would not have been able to give that kind of encouragement), Donnie and I literally stole Doah from the hospital in a very dramatic, made-for-the-movies episode in our lives. It's a story that Doah never tires of hearing. Here are the first paragraphs. If you are interested, you can read the whole story, including how once again God was able to bad into good, at the Clan of Mahlou site. (Sorry about the repeat for those of you who are followers at that site; there is a few followers who overlap, but most do not so, since followers here have come to know Doah a little through the excerpts from his book, I figured information about this posting might be interesting.

Told by doctors at Renboro Hospital that Doah would die for certain, the trail ahead of us to bring him into adulthood seemed hopeless and far, indeed — except that I simply have no idea what the word, hopeless, means. To me, where there is life, there is hope. Clearly, though, to maintain that hope, we would have to do something about the attitude of the doctors and hospital in which Doah was being followed.

We did not have to think long. Matters quickly came to a head at Renboro Children’s Hospital. Our knock-down-drag-out fights with doctors there pitted parent against doctor in a war that was not going to serve Doah well. In June 1980, that cold war heated up rapidly. I refused to sign papers for a fundoplication, an operation that would repair Doah’s hiatal hernia at the risk of losing him because of his breathing difficulties from a subglottic stenosis (narrowing of the trachea) that were treated by a tracheotomy. (Nowadays children's with tracheotomies have decent survival rates; back then, most of the children died.) Doah’s pediatrician, Dr. Paul, was one of our strongest supporters. He would come to the hospital, mediate disputes, and provide me with his medical opinion. Dr. Paul researched the surgical procedure. He learned that the operation (in 1980) had only a 25% survival rate in cases like Doah’s and, if the patient survived, there was only a 50/50 chance that the surgery would take care of the problem. In any event, the surgery would have to be repeated every few years. (Over the years, the surgery success rate and survival rate has approached nearly 100%, but the surgery does still have to be repeated every five years.) Given these statistics, the pediatrician agreed with us that surgery was not wise.

Bent on what we assumed was their pursuit of medical training and the chance to do what was then a relatively new procedure, the doctors insisted that Doah have the surgery. Part of me wondered whether they just assumed he was going to die, anyway, and therefore he was a good candidate for “training” surgeons on a new procedure. In any event, the doctors did not accept my refusal to sign papers authorizing surgery and took the case to court, requesting that the court grant custody of Doah to Renboro Children’s Hospital so that they could do the surgery. We were not told about this court proceeding; apparently, we were going to be deprived of the opportunity even to be in courtroom and defend our rights as his parents. Shades of American democracy as it sometimes perverted by evil forces! I found out about this intention because I read promiscuously —- books and journals and articles and medical records: all Doah’s surgical reports, all the nurses’ notes, all the medical entries of any sort. And that is where I found it. In Doah’s four-inch-thick file was a scrawled note about our being unfit parents because we would not sign for the surgery and the date of the court proceeding. The date was only two days away.

What to do? A daring plan entered my mind: steal Doah from Renboro Children’s Hospital and take him out of state to Beanton Children’s Hospital where Noelle had been treated for her spina bifida and related birth defects three years earlier. I trusted the doctors because they listened to me. The doctors I knew there even liked me. I quickly found out more about Noelle’s former urologist, Dr. Colodny, and learned that while he was at that time specializing in lower GI problems, he had at one time worked in the area of upper GI problems. He could be Doah’s doctor, I reasoned. That thought comforted me, but we still had to get to Beanton.

We developed a step-by-step plan to steal Doah from his hospital room. I shared the plan, but not the details or the timing, with the pediatrician. He looked at me thoughtfully. Then he said, “I cannot condone what you propose. However, if you do happen to end up in Beanton, please be aware that Bob, the son of my partner, is an intern there. He can provide the link back to us and make the transition of records and information smooth.” He disappeared from the room and came back in a couple of minutes with Bob’s phone number. The pediatrician’s implicit encouragement was all that I needed to put our plan into action.

The next day, the doctors were in court, and we were at the curb outside the hospital. Charles kept the car running in a “standing only” zone. What I was about to do would not, could not, take a long time, we reasoned.

Click here to read what I did: continuation of Stealing Doah.

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About Me

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I am the mother of 4 birth children (plus 3 others who lived with us) and grandmother of 2, all of them exceptional children. Married for 42 years, I grew up in Maine, live in California, and work in many places in education, linguistics, and program management. In my spare time, I rescue and tame feral cats and have the scars to prove it. A long-time ignorantly blissful atheist converted by a theophanic experience to Catholicism, I am now a joyful catechist. Oh, I also authored a dozen books, two under my pen name of Mahlou (Blest Atheist and A Believer-in-Waiting's First Encounters with God).

My Other Blogs

100th Lamb. This is my main blog, the one I keep most updated.

The Clan of Mahlou
. This is background information about various members of the extended Mahlou family. It is very much a work still in progress. Soon I will begin posting excerpts from a new book I am writing, Raising God's Rainbow Makers.

Modern Mysticism. This blog discusses the mystical in our pragmatic, practical, realistic, and rational 21st century world and is to those who spend some or much of their time in an irrational/mystical relationship with God. If such things do not strain your credulity, you are welcome to follow the blog and participate in it.

Recommended Reading List

Because I am blog inept, I don't quite know how to get a reading list to stay at the end of the page and not disappear from sight. Therefore, I entered it as my first post. I suppose that is not all that bad because readers started commenting about the books, even suggesting additional readings. So, you can participate with others in my reading list by clicking here.
I do post additional books as I read them and find them to be meaningful to me, and therefore, hopefully, meaningful to you. One advantage of all the plane traveling I do is that I acquire reading time that I might not otherwise take.