What Is Better Than Money? Merry Christmas!

We cannot put up a Christmas tree (real or artificial) because one of our cats, Intrepid, eats all kinds of plants and nearly died once from ingesting a lot of plastic branches. (Thanks to a concerned vet who rushed to our house, he is a wonderfully fine herbivore today.) We can, though, note Christmas in many other ways with decorations outdoors, Christmas cookery, finding fun gifts for colleagues, and shopping for the kids and the grandkids.

Ah, shopping for the kids! That is a relatively new and wonderfully pleasant experience. When they were growing up, we never had money for shopping for them. Medical expenses for Doah and Noelle always robbed us of that particular pleasure, and visiting them in the hospital -- Noelle was there Christmas day for a number of years in a row -- meant little time for shopping of any kind had we had any money to engage in that popular activity.

Nonetheless, we have many pleasant memories from Christmases past. For example, one year we had moved into a new place with a fireplace. Donnie had built a warm fire on a cold Virginia night, and we sat together, enjoying the evening while the kids were sleeping. Five-year-old Doah, however, woke up and crept downstairs. Seeing the fire, he began crying loudly.

"What's the matter, Doah?" we asked.

"Ho-ho burn butt!" he sobbed.

For the sake of Santa Claus's posterior, we put out the fire. Doah went off to bed quite happily, satisfied that he had finished his task of ensuring a safe entrance for the deliverer of gifts.

Then there was the year that we had no money at all. Christmas celebrations of the traditional variety were seriously out of the question, especially since we were moving at the end of December. The day after Christmas, as we were taking our first load of household goods to our new residence, we happened to drive past a Christmas tree lot and noticed that the lot had been abandoned. In the back of the lot was a lone, sickly-looking, leftover Christmas tree. Lizzie and Shane jumped out of the car and delightedly dragged it over to Donnie, who lashed it to the roof. Off we went, pleased with our acquisition, although we got strange stares from passing cars. We later decorated our puny little tree with our traditional ornaments, turning it into a festively proud fir. Homemade gifts in the form of food items were the theme of that year. We decorated the tree with cookies, fudge, and other favorite items of the kids that they removed and ate New Year's morning, the day we had decided would be "Christmas" that year.

Other examples of special Christmas events abound. I will share some of them:

(1) Our introduction to Christmas with kids came when Lizzie, our oldest and at barely two years old too young to know anything about Christmas yet -- or so we assumed -- stood in her pajamas at the window as dark settled around our apartment on Christmas eve and suddenly announced, "Santa Claus is coming tonight!" Oh, no! There were no plans for Santa to come that night! Donnie dashed to the car. It was nearly 9:00. The only store still open was a Five-and-Dime, and all Donnie could find in it were little socks for Lizzie's doll. It was enough to make her happy, and from that day we began the practice of one present per child for Christmas.

(2) We tried to make the one gift something very special, but we could never predict our children's strange requests. For example, Lizzie at the age of eight, a precocious fourth grader (she had skipped second grade), asked for a college textbook on genetics. Her interest came from attending the university Russian courses I taught on those days when she had no school and spending the hour in my intermediate Russian course solving problems passed along to her by one of my students who was majoring in genetics. (He also proudly dragged her to the honors program director, who invited her to attend some lecture-form university courses, where she promptly fell asleep. Nonetheless, the director offered to "enroll" her in the honors program as an aspiring college student, but doing so became too complicated. She had to wait another four years before taking her first college course for credit.) When Lizzie, who did become a genetics major for about three years before changing her major to cognitive neuroscience, received her Santa-delivered genetics textbook, she ecstatically raced from house to house in our small neighborhood to display her treasure, then returned home, plopped down beside me on the sofa, and mourned, "None of my friends like my gift! They think it's dumb."

"Well," I asked her, "What do you think? Are you happy with the book?"

"Yes. It's exactly what I wanted, and I really like all the problems at the end of the chapters."

"What did your friends get?"

"They got dolls. That's dumb!" I don't remember Lizzie ever playing with dolls other than the one that needed socks when she was little, a soft pink lamb that my grandmother gave her as a toddler and that she has to this day, and a monkey that my grandmother made for her out of a sock that she eventually wore out.

(3) One year, no one had been in the hospital all year, and we had money for Christmas! It was enough to buy bikes for Shane and Lizzie, pre-teen and teen at the time. Donnie and I were as excited as children to be able to get those bikes for our kids. (Noelle, who is paraplegic, and Doah, who is mentally retarded, never were able to ride a bike, but they got gifts that they had asked for.) That year, Shane and Lizzie had made no particular gift request, and we played a very cruel trick on them. We hung only the bike-lock keys on the tree and hid the bikes behind the house. The keys blended into the ornaments, and after the other gifts had been given out, Shane and Lizzie had nothing. In true Shane and Lizzie fashion, they looked around the tree one more time and said nothing.

"Did all the gifts get passed out?" I asked innocently.

"It seems so," said Lizzie. "Shane and I don't have anything, but that's okay. We don't really need anything. We didn't ask for anything this year."

"Really?" I asked. "Are you sure there is nothing else?" Donnie pulled one of the keys off the tree and handed it to them.

"Oh, oh, oh!" Shane exclaimed, "We have a bike!" Clearly, he assumed that Lizzie and he would be sharing.

"Go look out behind the house," Donnie suggested, and they took off running. We regretted not taking a camera with us when we saw the look on their faces when they caught sight of TWO bikes! They were extraordinarily understanding kids. They knew what it had taken for us to gather the money for two bikes, and they were grateful to us every time they rode them. That was a special Christmas. Donnie got a bike the following Christmas, and for years the three of them would ride together on Saturdays while I spent the day with Noelle and Doah.

The most special Christmas, though, was not one when we had money for gifts but one when we did not. It came two years after the bike Christmas. That year, multiple surgeries drained our coffers dry. Fortunately, we had an artificial Christmas tree with which a relative had gifted us a few years earlier, so we put up the tree and decorated it. Christmas eve ultimately came, and we knew we had nothing for the children. Donnie and I contemplated another year of cookies and fudge, but before Donnie got down to cooking (something he had to do alone -- I am such a bad cook, I would have wasted the ingredients in preparing inedible foodstuffs), one of us -- I don't remember which -- had a scathingly brilliant idea, to quote Hayley Mills' character in The Trouble with Angels. Donnie had by then begun working as a computer graphist, and we conceived of making coupons for each of the kids for one-on-one activities with Mom or Dad: a snack at McDonald's, a special lesson in one of our specialties, private walks, an activity that the child would choose, and so on. Each child received a book of twelve coupons that could be redeemed at will during the year. They loved them, and they used every one of those coupons! That year remains our favorite. In spite of our annually increasingly brighter financial status, no year matched that one for that year Christmas lasted not one day but twelve months.

The end: As I was writing this post, nostalgia made me turn to Donnie and start reminiscing about that very special Christmas. We want to repeat it. So, we have just decided to give our children and grandkids coupons for future joint activities this year. As for the money we had set aside for gifts, we are now excitedly planning how to get rid of it and have scads of ideas about where to distribute it. I will add a PS later, once we have decided where it will go.

Oh, this year is going to be such a great Christmas!

Matching Words to Situations

Finding an effective treatment or cure for a problem means identifying the right medicine. My grandmother used "pink pills" (wintermint drops) as a disciplinary measure (bribe) for kids with imaginary illnesses. Therefore, we would all develop an imaginary illness from time to time. My mother used sulfur and molasses any time any one of her children developed a cough. That stuff tasted horrible, but it was a magic cure. None of us would dare cough within hearing distance of her.

Using the appropriate medicine for an illness has a parallel in human relations. It is called matching the words to the situation. Sometimes they need to be soft, and other times they need to be direct. They always need to be in a language that can be understood.

My youngest son, Doah, whom we stole from a Pennsylvania hospital (we shall call that place Renboro Hospital) where he was dying from a subglottic stenosis, treated with a tracheotomy, and where the doctors angered us with their arrogance, was finally cured in Cincinnati. However, we were warned that while his airway would grow quickly, for several months it would be marginal and that Donnie (husband), Lizzie (oldest daughter), and I should keep our CPR skills current for those times when Doah might stop breathing. So, although we expected periods of apnea and knew that getting through these few months was the only way to get get Doah to the point where he could consistently breathe without a tube in his trachea, the apneic episodes were always unwelcome occurrences.

The first apneic episode after our return from Cincinnati resulted in my doing 15 minutes of CPR before Doah began to breathe again. While we were en route to the hospital, Donnie driving and I doing CPR (faster than waiting 20 minutes for a volunteer ambulance crew to be assembled), the local small-hospital staff contacted the Life Flight helicopter to fly Doah to, sigh!, Renboro Hospital. Even though Doah was breathing on his own by the time we reached the local hospital, he was whisked to Renboro.

Of course, we were not allowed on the helicopter with Doah, so we arrived somewhat later than he did. When I walked in, an ENT resident was sitting beside Doah and reading the ten-inch file on him. When he learned who I was, the doctor lectured, asserting that all the Renboro Hospital procedures had been correct, that I was an impatient parent who had erringly taken my child to another hospital, and that clearly Doah had needed a tracheotomy and still needed one because he had scar tissue in his larynx. He told me that an operating room was being readied as we were speaking. I explained the opinion of the doctor in Cincinnati, who had not replaced the tracheotomy when Doah had accidentally removed his breathing tube in his sleep: The problem was not the old scar tissue in the larynx but the new scar tissue caused by the tracheotomy that was now interfering with Doah's breathing and that if everyone were just to leave him alone, he would outgrow the problem. (We sure loved that doctor in Cincinnati! Dr. Robin Cotton is his real name, and he has a large fan club, formed of the parents of all the children whose lives he has saved.)

The Renboro Hospital resident patronizingly pointed to the laryngeal area. In condescending tones so typically used with parents, he said, "Right here is where the scar tissue is, and we must put in the tracheotomy again."

I was very tired from the CPR, the 45-minute drive to the hospital, and the late hour. Further, Donnie was still parking the car so I was alone with this insolent, obtuse (my opinion), and impolite doctor-in-training. At that point, I chose to talk to the resident in a language that he could understand quietly and calmly and, therefore, effectively.

"Doctor," I said firmly, "this baby does have subglottic anomalies, but the area of gravest concern is the site of the tracheotomy itself where there has been a significant build-up of granulation tissue." (Comfort with that language comes from my study of Greek and Latin--and much time spent reading medical journals.

The doctor looked at me for a minute or so silently. Then, he picked up Doah's chart and walked off with a monosyllabic comment, "Oh."

I fell asleep beside Doah, not waking up until morning. At that time, Doah was released without further discussion of another tracheotomy. We finally got Renboro Hospital to do it our way!

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Excerpted and adapted from a collection of vignettes I published about real-life events, copyright 2003.
Note: Also posted on The Clan of Mahlou and 100th Lamb.

Time to Quander

I ask the indulgence and prayers of readers of all my blogs. Other than for an occasional, already-written post or the Monday Morning Meditation (I never miss an "appointment" with God and right now that is especially important to me), I will be taking a week or so off to quander (ponder a quandary).

Donnie received a shocking call today from the work place of Doah, our youngest son, who lives in a group home for the mentally challenged, and immediately called me: Doah had been raped. I immediately left work, and we headed north. We met with the sheriff's department, the folks from Doah's workplace in whom Doah had confided, doctors and nurses, an advocate for victims of violent crimes, and Doah himself. Doah went through five hours of medical tests and over an hour of interrogation from the sheriff's department. The medical staff said that Doah inspired them with his obviously deep faith that gave him an extraordinary resiliance. The deputy told Doah that he was the best crime victim he had ever met -- Doah was straightforward and explicit, got the details right, and did not back down from uncomfortable truth. By the time the evening was over, the deputies had tracked down the alleged rapist, an illegal alien without documents who seemed to have disappeared according to everyone who knew him, and had him behind bars. Impressive! So was the orderly procedure and all the help made available to us.

Nonetheless, this event has thrown our lives out of kilter, and I need some time to put things back together. We have brought Doah home with us until we can find another group home for him. We have to decide on any legal action we wish to take against the group home -- a difficult decision because I am suit-averse by nature. There is also more testing to do and results of testing to receive: hepatitis, gonorrhea, chlamydia, syphilis, HIV/AIDS. The latter is very frightening and very possible. I am asking all our friends to pray that Doah passes through this terrible experience without contracting HIV/AIDS as a permanent reminder and life-threatening consequence.

Thank you for your understanding and any prayers you are willing to say for Doah (or candles you are willing to light). God bless you until I am up and running regularly again.

Finding Doah

My continuing apologies for not being able to deal with graphics on this old computer--my laptop is STILL in computer repair land on the East Coast, and I am told that those experts have not yet figured out the problem nor made a decision what to do. In the interim, Word does work, and so I am hard at work on my next book, in and around travels and real work. I have completed six of nine chapters, and chapter seven is nearly done. As promised, here is an excerpt. It is a just-finished section of chapter 7, which I will post on all my blogs for which the topic is pertinent.

As a child and through his teenage years, Doah had a habit of slinking off, mainly from curiosity or because he wanted to go somewhere and there was no one to take him at precisely the time he wanted to go. It was not the kind of disappearance that a fully mentally competent child of the same age would make. Rather, it was a matter of marrying “want” with “immediate fulfillment” prompted by naivete and complete trust in the safety and kindness of the surrounding environment associated with the simplicity of mental retardation. Usually, we would find Doah a couple of aisles away in the grocery store, in the backyard on the swings, or at a neighbor’s house. Scarier disappearances, however, did occur, like the time he decided to walk down the middle of Lee Highway, the main thoroughfare in Arlington, Virginiua.

One Sunday morning when Doah was twelve years old but the size of a seven-year-old and with the mental age of a seven year old, I emerged from the shower and could not find him. I checked the entire house. No Doah. I checked the backyard. Empty swings. I checked with the all the neighbors. No visit to their homes that day. Frantic panic set up, and I began walking the streets in our subdivision, calling his name. Neighbors I had never before met told me that they knew Doah. Really? He had been wandering farther afield than I had known. When? I suppose I will never know the answer to that question. At the time, though, I was more interested in how far his wandering might have taken him. I returned home to Donnie empty-handed.

“Why are you losing time by walking all over the neighborhood?” he asked me. “Just think where he is.”

“Thinking” actually referred to what I often knew about my children from unexplainable sources. For example, I occasionally “knew” in advance that one or another would get hurt at school that day, creating a dilemma in that I had no way to tell a teacher to be careful and try to prevent the accident. No teacher would believe me, yet each time the child in question in woulds indeed return home with some minor injury. If I were sitting quietly, thinking about nothing at all, sometimes an image would appear of the child, either where the child was at the moment or what would happen to the child in the immediate future.

“Nothing comes to mind about Doah,” I told Donnie.

“Just calm down and think for a minute,” Donnie advised.

I emptied my mind and, blast!, in came an image of Doah, clothed in white with a blue belt. He was standing, surrounded by white. White everywhere. Well, one can imagine the worst possible scenario from that.

“I think he’s dead,” I told Donnie. “Everything around him is white.”

“What else?” Donnie pressed, knowing that I am one to miss details. “There has to be more. What is he doing? Is he saying anything? Is there anyone else there?”

Ah! I could not see whether or not there was anyone else there, but he was standing and clapping! Clapping? Church!

Although Donnie was agnostic and I atheist, we did allow our children to attend church services if they wished. Doah had taken up recently with a church downtown, about a mile from where we lived. He would get there by bus, or someone would pick him up. If the latter, the van driver would always come to our door, and that had not happened this time. Still, I knew Doah was at the church.

Donnie and I drove to the church apprehensively. What if he were not there? Then what?

I walked in the door and immediately knew I was in the right place. The inside of the church had been painted—all white. I wandered through one of the rooms, heard some singing, and moved in that direction. As I turned the corner, I saw another white-walled room, and there in the front row was Doah, standing and clapping, dressed in white clothes, with his blue money belt around his waist. Thank God!

I do not know how to interpret these out-of-the-ordinary experiences in my past. I find it hard to believe that such “help” would come from something demonic. Yet, clearly most parents do not find their missing children by emptying their minds and allowing an image of the location of their children to enter. In some ways, these images presaged how nowadays I approach contemplative prayer. Perhaps back then they reflected God’s way of dealing with an atheist in the only way she would (or could) accept.

Find the Angel

In nearly every situation, there is an angel who could help. They are often easier to find than one thinks.

Probably the most literal example was at a Christmas party held a number of years ago by a group of Czech immigrants who taught in one of the foreign language education programs I supervised at the time. They invited Doah, who has made a lifetime habit of asking people for help, to attend.

Doah did not know Bohemian traditions, but he quickly figured things out. All the children sat in a circle while Mikolaz (St. Nicholas) read a list of their bad behaviors during the year (prepared, of course, by each parent). The, for each, Mikulaz decided whether the devil, who was dancing up and down in gleeful anticipation near the child in question, could throw him or her into his sack for transport away from this world, or whether the child's behavior had been good enough or contrition deep enough for an angel, also standing nearby, to give a present. Each child quaked. Some cried.

When it was Doah's turn, he must have thought that there was no hope for forgiveness for him. Partway through Mikulaz's reading of Doah's "sins," Doah got out of his child, walked over to the angel, took her hand, and said, "I in trouble. You help me? It your job help people in trouble."

To this day, some people cannot stop laughing at what they perceived as the difference between the "American approach" and the "Czech approach" to a problem. Actually, I don't think Doah's behavior had as much to do with cross-cultural
differences as with his own skill at finding angels. Of course, the angel helped him.

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Excerpted and adapted from a collection of vignettes I published, copyright 2003.
Note: Also posted on Mahlou Musings and Clan of Mahlou.

A Positive Word about Flattery

The below text is one I posted yesterday on Mahlou Musings, an excerpt from a book I wrote several years ago. I thought it might also be worth sharing on 100th Lamb.

Lewis Lapham (Lapham's Rules of Influence) advises the profuse use of flattery. He writes that "flattery is comparable to suntan lotion or ski wax. It cannot be too often or too recklessly applied."

My two handicapped children, Noelle and Doah, know this. As children and adults, unlike what one might expect, they have been quite popular, among others reasons, because they routinely use flattery.

For exmaple, Doah, when needing help, will often address a nearby woman, "Excuse me, pretty lady. You help me, please?" What woman does not like to be called pretty?

And who would not feel good about helping someone clearly disabled who shows appreciation through more flattery by saying, for example, "Thank you. You're a nice person. I like you."

Likewise, Noelle once got me out of a traffic ticket when I accidentally drove through a stop sign. A four-year-old at the time, she was clearly thrilled at the sight of the police officer who pulled me over. While I searched for the car registration, she gushed flattery at him, telling him how wonderful she thought policemen were, how kind, and how helpful. He told me to forget the registration, that he would give me only a warning because he did not want my daughter not to like policemen.

Although she became more sophisticated about how she words things, Noelle has continued to use flattery and to be treated with warmth by people with whom she interacts. For example, she had a series of negative experiences at what I shall call Hospital A in Washington and ultimately we transferred her to Georgetown University Hospital, where she had a series of positive experiences. Near the beginning of her treatment there, she had to be hospitalized. Unfortunately, no beds were immediately available, so the staff spread out a blanket on the floor of her room. The clinic director, embarrassed by this situation, stayed with Noelle two hours until a bed was found. She apologized to Noelle several times.

Noelle's response was, "Hey, I'd rather be on the floor here than in the softest bed at Hospital A." Obviously, that piece of flattery made Noelle a favorite patient for the entire time she was at Georgetown University Hospital.

We all like to hear other people say good things about us. They, too, like to hear good things said about them. Flattery often works where other means of motivation fail.

My sister, Danielle, points out that when flattery is sincere, there are many ways to get the good intentions to multiply. She cites the example of her husband, Bill, who has often elicited support and astounding service by first complimenting the employee sincerely with supporting details and then going on to report the employee's exceptional service and performance to the employee's supervisor, attributing the employee's attitude and performance to the supervisor's skill in management.

"By the end of the conversation," she wrote to me, "the supervisor and supervisee are dancing around Bill to see that everything goes smoothly."

So, slather the flattery wherever it is deserved!



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Excerpted and adapted from a collection of vignettes I published, copyright 2003.

Doah's Angels

Doah, helping Sue Scott with her large yard

Following the post on Noelle's Angels in Scrubs, this post tells the story of those who helped Doah. In Doah's case, both teachers and doctors were important, as was Andi Kush (but since Andi was introduced in the post on Noelle, I won't include her here except to say that her presence in Doah's life was as important as it was in Noelle's).

About Doah:
Doah is a 29-year-old young man, for whom doctors predicted only one possibility: demise before his first birthday. Some were very annoyed with me that I held onto hope that they considered unwarranted and naive. We survived a very shaky first 18 months as Doah's tracheotomy, the treatment for his subglottic stenosis, clogged again and again, resulting in 5 clinical deaths, two of which included heart attacks that preceded apnea. We all had to be very good at CPR because all of those deaths occurred outside of the hospital, one of them in my arms as I was nursing him. I learned all kinds of creative techniques beyond traditional CPR to get Doah breathing again, and his older sister became the youngest person (age 9) the local Red Cross ever trained in CPR. It was necessary. If Doah stopped breathing while I was in the bathroom, someone had to help him. As a result of our acquired skills, Doah survived all those cloggings. In fact, he was the only trached child followed by Renboro Hospital that year to survive the winter. As for me, I was a doctoral student and a teaching fellow. After his tracheotomy surgery I could not find an appropriate babysitter, and so Doah went to classes with me. Where I was a student, he sat in a baby seat beside me. When I was teaching, I placed him under the podium. One of my students, watching the difficulties, later became a social worker, committed to finding better solutions for parents of challenged children. Doah spent most of his school years in special education, where he managed to successfully demand that a class of autistic children interact with him (when we left, the school set about looking for another Doah -- an extreme extrovert in need of daily speech therapy to add to the autistic class for the following year in the hopes of repeating that success). During high school years, he singlehandedly convinced the gym teacher to integrate his special education class into regular education gym with his football player "buddies." At graduation, he received a standing ovation and was the only student, other than the valedictorian, mentioned by name in the town newspaper. He was also voted "class flirt," the first time in the history of the school that a special education student had won a popularity award. Today, Doah lives semi-independently in a group home in Santa Clara. He works in a sheltered workshop and has a free enterprise "franchise" there for selling chips and soda. With my help, he published a book of humor that has gained a following in Russia, where a professor of psychology at St. Petersburg State University translated it into Russian, in Moldova, where its short, simple, funny texts are ideal for use as tests in ESL classes, and, to a lesser extent in the USA, where he was invited to the 2003 national book exhibition in Los Angeles. (He was quite proud of his "author" badge.) On two weekends a month, he stays with us and can be found wandering around town, photographing whatever event is taking place; several of his photographs have been published.

Doah's challenges:
Doah was born two months prematurely, but he had no major problems directly traceable to that early birth because he was a big baby (4 lbs) and the doctor had given me steroids during my five days of labor, developing Doah's lungs and avoiding hyaline membrane disease, which was then the leading cause of death of premies of that gestation. Over time, we found one after another after another birth defect that had not showed up immediately at birth, for a total of 18 birth defects. Initially, Doah failed to thrive, which turned out to be attributable to his inability to digest formula, which the babysitter fed him. My body had adjusted to nursing at night only and so formula was needed during the day. The solution we found was a babysitter who could wet nurse him, and during a two-week period when I was called to active duty because of a national defense crisis, she kept him round the clock. She watched him until he had his tracheotomy surgery. The most serious of Doah's birth defects was subglottic stenosis, a narrowing of his trachea to the point that he could not breathe; for that, he needed a tracheotomy, which he himself removed without any of the medical staff noticing while he was at Cincinnati Children's Hospital, awaiting assessment for a crichoid split or laryngeotracheoplasty to take care of the stenosis. This was a premature take-down of the tracheotomy, so we had to keep our CPR skills current until Doah gained more airspace in his trachea through growth. The next thing discovered was a hiatal hernia; he still has that and the reflux that goes along with it. Then, a bifid uvula (just a curiosity) and a submucous cleft palate came to light. The decision was made by Georgetown University Hospital doctors not to fix the cleft palate because Doah's chance of survival was too low. Instead, we arranged for daily speech therapy; it has helped to some extent. After that, Doah needed surgery for an undescended testicle, as well as a bilateral myringotomy (ear tubes in both ears). Some of the other unfixable things discovered were malformed ears, a coloboma (failure of the eye to close in the back -- so rare that all of the eye doctors in training at Stanford University were paraded over to Lucille Packard Children's Hospital to look at it in case they ever saw another one), and extremely short stature. Over time and with testing, he was discovered to have ADD (some argued that he had ADHD, but Doah's hyperactivity was actually due to food allergies, specifically yeast). He also had 63 (!!) other kinds of allergies. When Doah reached the age of 12, Stanford University Hospital learned that some doctors were identifying a syndrome that Doah might fit: CHARGE Syndrome. The identification would not help Doah, however, because from what the Stanford doctors could determine Doah was the oldest survivor of the syndrome and therefore while his progress could inform doctors about what to expect with younger children, there was no way to predict what to expect with him. There were other, minor defects, some of them associated with CHARGE Syndrome, including a heart murmur, but the ones described above were the most troubling. Oh, and either congenitally or as a result of lack of oxygen from apnea and the tracheotomy, Doah ended up mentally retarded.

Doah's special caregivers:

Dr. Richard Paul was Doah's first pediatrician, and he was amazing -- a gift from God. He trusted us implicitly from his experience in working with our other children. If I said something was wrong, he reacted immediately because I usually handled run-of-the-mill illnesses without comment. He also trusted my decisions, the most dramatic of which was to steal Doah from Renboro Hospital and take him to Children's Hospital in Boston while the Renboro doctors were in court, trying to get custody in order to do a fundoplication that I was sure Doah would not survive and which was not a very successful kind of procedure, anyway. Since Dr. Paul twice supported me against the staff at Renboro Hospital (once when the doctors wanted me to stop nursing the baby for the convenience of the hospital staff and did not take into consideration Doah's failure to thrive on formula and once at a meeting that Dr. Paul himself requested with all the staff and me because he did not find the care coordinated or self-expanatory enough), I felt comfortable telling Dr. Paul about my plan to steal Doah. He said that while he could not condone my plan, if I were to carry it out, his partner's son was a resident at Boston Children's and could create a link back to the pediatrician. Armed with name and phone number, I went ahead and stole Doah in a rather dramatic scene, which had me fleeing down the stairs ahead of security personnel with Doah half-wrapped in a blanket, jumping into the idling car where Donnie was waiting for me on the curb outside the hospital in case we needed a quick getaway, and zipping off to the airport. We made it! And Boston Children's staff disagreed with Renboro's plans. Without an operation and with sensible nutritional care, Doah gained four pounds in one month and was discharged as a relatively healthy baby.

Dr. Colodny was the Boston Children's doctor who rescued Doah, stood up against the plans of Renboro Hospital, forewent an operation, prescribed a successful treatment, and, most important, listened to my experience of Doah and took that experience into account in prescribing treatment. I knew he would because he was the doctor who took down Noelle's colostomy (oh, yeah, I forgot to mention that she had had that in the previous post -- oops; too many medical issues to remember them all 30 years later) and who agreed with Dr. Moffett not to require Noelle to take prophylactic antibiotics (see "Angels in Scrubs"). Ironically, it turns out that he is a friend of Dr. Kennedy at Stanford who is Nikolina's attending physician.

Dr. Robin Cotton was the doctor at Cincinnati Children's Hospital who figured out the source of Doah's stenosis: aspiration of breast milk. Ironically, that which allowed him to thrive had caused the problem that was threatening his survival. More important, though, Dr. Cotton knew that Doah would outgrow the problem. At the time, it turns out that Dr. Cotton, who had recently immigrated from Canada, was the only doctor in the USA who knew anything about tracheal stenosis. Most important, when the Renboro doctors refused to give me a consult for a second opinion -- they were still mad about my stealing Doah and thwarting their custody attempt -- Dr. Cotton took Doah without any paperwork and somehow managed to get the insurance to cover the costs.

Dr. Doris Rapp is the author of the book, Allergies and the Hyperactive Child. Her book was our first indication that Doah's hyperactivity might be food-based. After seeing her on 20/20, I sent her Doah's records and asked what she thought. She called me at work. I was floored since she did not know me. She told me that Doah was too complicated for her but that Dr. Sydney Baker at Yale University could handle him. Unfortunately, Dr. Baker had retired. On the other hand, fortunately, Dr. Baker was a friend of hers. She had called him and asked him if he would come out of retirement to work with Doah -- and he had agreed! The kindness of strangers -- there are no words! Once again, I was floored.

Dr. Joan Landy was Doah's first teacher. She taught him to read when that seemed impossible. She taught him to sit still when that was clearly impossible; she asked our permission to use something that is no longer used: a trip-trap chair that encircled him, holding him still. She also named her very active puppy after him! A university professor prior to returning to teaching, she had taught the teacher of the autistic class that Doah subsequently attended when we moved to another district, and she helped that teacher understand Doah. She kept a daily journal between her and me so that any little thing could be taken care of as soon as it arose. Once, years later, when I called for advice, she told me that I would never guess what she was looking at as we spoke -- a picture of Doah that she had kept on her desk (she had become the head of special education) for a half-dozen years! When Doah graduated from high school, she had the announcement framed as a gift to him.

Sue Scott was Doah's last teacher. Although teachers in-between Joan and Sue had given up on improving Doah's reading skills, Sue did not and little by little, her efforts were met with success. If only she could have had him for more than his senior year! Doah's senior year differed considerably from other years. We had been forced to remove him from the Salts schools for fear that he would disappear (long story, not for this post). At the same time, I had been offered a one-year position at NASA in Houston. While I was trying to figure out where to send Doah to school -- in San Diego with Lizzie, his oldest sister, or in Houston with me -- my brother, Rollie, called and offered him a home there. So, Doah attended Hayes High School in Ohio. As the year ended, Rollie's apartment complex manager said that Doah could not stay after graduation because of rules against multiple adults in one household. So, a group home placement for post-graduation living and a sheltered workshop for learning to work had been arranged but was not quite ready on time. There would be an all-summer gap. The problem was widely known. Sue called me in Houston and offered to let Doah move in with her over the summer. I could not believe what I was hearing! I had come to know Sue well from my frequent trips to Ohio, and I trusted her completely. Such an offer, though, was almost unfathomable! Doah not only spent the summer with Sue, but once he and I had both returned to California, he spent a couple of work vacations with her. If he goes to Ohio to visit Uncle Rollie, he also goes to visit Sue!

So, once again, there is another side to the perhaps somewhat negative picture I painted on recent posts about Doah (see Doah, This Time and To Conserve or Not To Conserve). Clearly, some of the doctors made some very wrong judgments and as a result we almost lost both Doah and Noelle. Doah, especially, was difficult because he had a very rare set of anomalies, about which nothing was known in the 1970s. So, some of our frustration came from wanting and perhaps unreasonably expecting the doctors to know that which they did not and could not at the time know. But when it is your child, the expectations are high! What made everything manageable is that God sent us just enough brilliant, caring doctors to keep Doah alive and completely overwhelmed us with caring teachers and care providers who went so far beyond the pale to help us that the pale disappeared from view. There is no way we can ever repay these wonderful people. We can only pray for their long-term well-being and happiness and pass on to others the love that they, God's angels in professional garb, showed to us.

To Conserve or Not To Conserve; That Is the Question

They say that little children have little problems and big children have big problems. They also say that the only difference between men and boys is the price of their toys. That seems to be the case with our children. As they have grown up, we have encountered significant problems needing our assistance, perhaps far less frequently than the near-weekly emergencies in their youth (which is good for our sanity), but the problems are bigger and cost is higher.

In Tuesday's post on Doah, I mentioned that he is not conserved. Whether or not to conserve him (make ourselves his legal guardians or allow him his adult independence to the extent that he can manage it) has been a difficult question, one that was posed when he turned 18 and one that we have not yet answered even though Doah will be 30 in November. It is a significant decision in many ways:

(1) Once done, my understanding is that it cannot be undone unless something changes dramatically in his life, and I cannot imagine what that would be. To conserve him, we have to show that he is not mentally fit to take care of himself, and we can argue that in either direction.

(2) With an IQ score of 52, two points higher than "moron" (Who on earth thought up that label?), we could easily convince a judge that he is not capable of taking himself. However, he is able to take care of himself under most circumstances. We have worked hard to get him to that point. When a psychologist who did not know him recently interviewed him without conducting an IQ test, she listed "mild mental retardation" -- a label that would put him about 20 points higher than he really is. When HOPE volunteers worked with him years ago, I overheard one say to another, "This is probably the greatest delta below low potential and higher actuality than you will ever see." I am afraid that conserving Doah will undo some of this hard work and send him the message that we don't think he can take care of himself -- and will also create situations when city, state, and federal regulations will not allow him to take care of himself.

(3) On the attractive side of conservation is the fact that doctors will not be able to undertake treatment without our consent, and there is a possibility (we are checking this out) that he will be able to be carried on our insurance, which will allow him access to a PPO, rather than the state-provided MediCal doctor, who is often someone considered to be lesser talented than the private doctors. This benefit was particularly attractive to us this morning as we headed up to San Jose to talk to Doah's doctor.

We wanted answers:

1. Why did the emergency room pay no attention to the fact that I had told them that Doah reported vomiting blood, that he had severe side pain and the inability to urinate, and that he was running a fever. My concern was that the blood might indicate possible esophageal damage from 30 years of GERD due to an unrepaired/unrepairable hiatal hernia and that the combination of retention of urine and fever might mean a urinary tract infection. I was definitely not reassured when his group home monitor told me he had been sent home, with tylenol, on bed watch. How does tylenol help an infection?

2. In preparation for an appointment with his primary care physician which we requested as an immediate follow-up to the emergency room visit, I researched all the medications he has been taking under the oversight of the social worker who follows him in his group home. There were 15, some of them pretty severe and not at all related to any problems he has: medicine for epilepsy (he is not epileptic) and for bipolar disorder (he is not bipolar), among others. These had been prescribed by a psychiatrist. Others, mostly for the 63 allergies he has, made sense; those had been prescribed by the primary care physicial.

So, off we went this morning, with a bit of trepidation, to confront her about the quality of Doah's care. Although we should have been used to such confrontations, considering that I don't remember how many dozens such meetings we have had with the doctors in the past, we were nervous because few doctors accept MediCal, and without having access to any other insurance (What insurance company will insure, outside of a group plan, an individual with 18 birth defects and monthly medical follow-up needs? Just one of the difficulties of needing medical care in America...), if we were to tick off Doah's current doctor, she might decide not to keep him as a patient. Unless she were totally incompetent, she would be better than no doctor at all.

As it turned out, we were in for quite a surprise. Contrary to a number of our previous experiences, she turned out to be patient (with us), quite knowledgable, and committed to Doah. This was the first time we had met her because until we ran into this latest complication, we had thought that Doah's medical care was under control. And, for the most part, it apparently is. The doctor agreed with me that there are some pointed questions to be asked of the psychiatrist (Oh, I will do it! Just have to get that meeting set up!), but she reassured me that the emergency room team had taken the proper action and had indeed listened to my concerns. They had used an NG tube to find out what Doah could have been vomiting and found out that while it had the color of blood, it was not blood. They also confirmed that there was no urine infection before they sent him back home; their final concern and the reason they put him on bed watch was the fever. Whew! I should have retained my normal optimism, but with Doah's traumatic and dramatic history, I sometimes put aside my willing suspension of disbelief, to quote Aristotle's theory of poetics (and drama). The whole problem came from the fact that once the doctors learned that Doah was not conserved, they no longer felt constrained to let me know what was going on. After all, Doah could sign all the paperwork for himself. So, they never bothered to let me know what they had done -- something that would not have happened had Doah been conserved.

The primary care doctor ordered some additional tests to find out what had really sent Doah to the emergency room and what is really happening with his esophagus and hiatal hernia. Those will be done tomorrow, with the results in next week. So, maybe we don't have to conserve Doah after all, if he has a capable doctor. Nonetheless, we only had a say in his care today because she "allowed" it. The psychiatrist, with whom we will be speaking soon, may not allow it.

So, we still don't have an answer, but fortunately I don't have to have one right now. We are on track to better management of Doah's health.

In any event, Doah already has a conservator and a lawyer: God. That, in my book, is enough. I am sure God will lead us to an answer when and if an answer becomes necessary. In the interim, we trust God to take care of Doah -- and so does Doah.

Doah, This Time

Just when one thinks the past is in the past, someone comes up to prove that time is simply overlapping layers. Late Sunday evening, the past, present, and future all came together for Doah, our mentally challenged son who suffers from CHARGE Syndrome and 12 other birth defects, and us, when Doah was taken to the hospital from his group home by ambulance. Doah had been vomiting blood and retaining urine. He also had a very high fever. The doctors desperately tried to reach us for permission to treat Doah, but once they found out that he was not conserved, they failed to keep us informed of progress. We learned that Doah had been sent home with Tylenol and put on bed watch at the group home by periodically calling the group home in the morning until Doah appeared.

This may seem like strange treatment but is pretty typical, in our experience, for MediCal patients in California. (Doah is too old to be insured by our policy and therefore has to be covered by MediCal, which seems to restrict doctors to caring for symptoms, not isolating causes of health problems.) A year ago, we could have lost our daughter, Noelle, who has spina bifida (including paraplegia, hydrocephalus, and epilepsy) through this kind of policy. She was ambulanced with neck pain to Salts Memorial Hospital. The ER doctor doped her up on morphine, and she was dead to the world when I arrived, checked her shunt for the hydrocephalus, and found it sluggish. I explained to the doctor how dangerous the morphine was; if Noelle had gone into acute hydrocephalus, she could have stopped breathing and simply died without being able to tell anyone she was having any problems because she was too doped up to know. I vigorously shook her out of her morphine stupor to the point that she could, struggling to semi-consciousness, communicate with me and confirm that she had a shunt malfunction. It took considerable effort (read that: bitchiness) to get the doctors to send her to Stanford for a second opinion. The Salts diagnosis: neck pain. The treatment: pain killer. The Stanford diagnosis: shunt malfunction. The treatment: surgery -- placement of a new shunt. Thank God for bitchy mothers, if I do say so myself.

So, here we are in a similar situation with Doah. Donnie (husband) managed to get us an emergency appointment with Doah's primary care physician on Thursday. I want to know what she plans to do about the presenting symptoms of urine infection & fever (my guess: urinary tract infection -- antibiotics, I dare suggest, would be more effective than Tylenol) and vomiting blood (my guess is either an ulcer -- preferable -- or esophageal damage from 30 years of gastric reflux due to a hiatal hernia, which is worrisome because it can lead to esophageal cancer). All of Doah's records -- whole boxes of them -- now exist only in my head because he has been followed by so many places and much has been archived, and we will need to build a website for him like we did for Noelle last year, so that doctors can check the details not available from local records.

Doah, in his lifetime, has presented us with exciting (as in "get it correct immediately or he dies") opportunities to learn more about health and become more directly involved with the medical profession. First, doctors gave him a 0% chance to live. Then they helped him breathe by giving him a tracheotomy. After that, they wanted to do some experimental gastroenterologic surgery, and when we refused consent because Doah was weak and losing weight and the surgery had only a 25% survival rate, the doctors went to court to get custody so that they could do the surgery against our wishes. While they were in court, I sneaked into the hospital just like in the movies and stole Doah. Donnie drove us immediately to the hospital, and I flew from Pennyslvania to Massachusetts where the doctors agreed with me. Doah thrived there, and ultimately, through my research at the medical school (I tricked my way past the ID guards), we found a doctor in Cincinnati who could save him from the subglottic stenosis that he had developed right after birth.

Doah routinely brings us episodes that we would enjoy more on television than in our lives. However, we don't call those shots, and it looks like we are smack in the middle of the next episode, like it or not.

The positive side of our very own television series is that Doah is clearly God's child. God has watched over this one: five cardiac arrests, two heart failures, an incredible number of apneic episodes when I was able to get him breathing again, my finding the only doctor in the USA who could have saved him, a pediatrician who supported me through it all (including knowing about the planned theft from Renboro Hospital years ago), and much more. As he has grown, Doah's connection with God has become clearer. Doah would know things that no one could possibly know and yet they would turn out to be true. Doah today will often say, "God told me this" or "God told me that," and those things turn out to be true, too.

I love our little mission town, and Doah does, too. The connection he seems to have to God really resonates here. I remember his first visit. He looked at me, and the first thing he said, with obvious satisfaction, was "God here." I think that says it all! And that is why, even though I have to put in the effort to force doctors to take proper care of him, I don't truly worry about Doah. He is, after all, God's child, and God takes care of him.

Doah Went to Court, or God Knew Best

With another interesting comment coming in early this morning on the topic of God (not) answering prayer, I am thinking again about the post about my catechism classes and the teenagers' frustration when God does not give them exactly what they want -- and, in reaction, they declare that God is dead or does not exist. (Of course, much of that is for the dramatic effect on us teachers, and the rest of it is to keep up the "cool" image of the cheerleaders and ball players in the class.) What I tell them is to look beyond their own agenda and see what God might know that is better than what they want.

A highly troubling personal example bubbles to mind when I think about prayer and God knowing best. When I first returned from Jordan three years ago, I learned that my mentally challenged son Doah had gotten into some serious trouble at the local mall. At the time, he was living in a group home for disabled adults and working at a sheltered workshop, as he does now. He was in his mid-twenties, but because he never surpassed 4'7", he never seemed to be older than 8-10 years old, which is the outside limits on his mental development as well. A very affectionate person, he had seen a young girl he knew at the mall. She was with her parents. He went over to her and hugged her. At that point, all manner of chaos broke loose. Although Doah's size was the same as the girl's, the girl was only 13. The parents freaked; Doah does look "different." Mall security seized Doah, and off he went to jail. The group home director got him out of jail, but the district attorney wanted to prosecute even after the parents, who had finally figured out what was happening, dropped the charges. The DA had a goal: Get retarded people off the streets of Salts, the city where Doah lived.

Lizzie, my oldest daughter, was visiting at the time that Doah's first appearance in court took place. We had only about a day's notice. I had just returned from a long time out of the country, and the group home was not used to my being around to inform about such things and had somehow also missed informing Shane, who looks out for Doah when Donnie and I are not around. Donnie was still in Jordan. So, Lizzie and I went to court with Doah. However, because Doah is not conserved and is of age, neither of us was allowed to appear with him. We had to sit in the back of the courtroom.

When the judge called Doah, he read him the charges: sexual molestation. (For a hug!??!) The judge then asked Doah if he understood the charges. Of course, he did not. He appeared quite confused, and the judge repeated, "Please answer me. Do you understand the charges?"

Doah responded, "You give me credit card? I buy something?" Now the judge was confused! He looked around the courtroom, somewhat desperately, and saw Doah's social work leaning over the barrier.

"Are you with this young man?" he asked.

The social worker identified his name and position and was allowed to approach the bench. He told them that there was family in the area and that the family wanted a private attorney. (The judge had been about to assign a court-appointed attorney, and, I fear, that would have been a railroad job. The DA would have had his highly visible case that could have turned into sanctioned discrimination against an entire class of people.)

We have a friend who is considered one of the best defense attorneys in Salts. I had actually been instrumental at one point in putting him on the fast track to practicing law in California so he helps us out from time to time. He took Doah's case gratis. He thought it would be open-and-shut, but it turned out that the DA would not budge. He had a chance to make a name for himself and get his agenda implemented, and he planned to do it. Our lawyer was temporarily stymied, and Doah was definitely going to be put on trial. There were only two possible outcomes of such a trial: (1) jail for a year, or (2) probation and identification for life as a sex offender.

So, if Doah were your son, which outcome would you pray for? Being in jail would have taught my little imitator how to do many bad things that would have followed him the rest of his life to his detriment. Probation was fine, but being labeled as a sex offender would also have followed him all his life to his detriment. So, I asked God for the only thing I thought could possibly work: for God to make the decision on what would happen to Doah.

The morning after that prayer, our lawyer called me excitedly. He said he had turned the case over and over in his mind and saw no way to win; he had spent a couple of days trying to convince the DA that what he was doing was wrong-headed and not appropriate in this case and still saw no way to win, given the DA's stubbornness. Then, when he got out of bed that morning, a thought from nowhere had tumbled into his head: the DA has a supervisor. So, he went to the DA's supervisor, explained the whole case, told him that he had known Doah since Doah was 9 years old, and that what had happened was only a result of Doah's generally friendly nature. The supervisor agreed that there was more than met the eye, requested a psychological examination, and said that a third option would be added: If the psychological examination confirmed the lawyer's analysis, then Doah would be put on probation for a year and if there were no further incidents all court records would be expunged as if nothing had ever occurred.

And, so, that is exactly what happened. The psychologist said that Doah had the mental acuity only to determine whether a behavior was good or bad but not the ability to understand that a good behavior becomes a bad behavior depending upon circumstance. That would be too fine a distinction for him to make. In other words, hugging is good at home, school, church, parties where you know everyone, but it is bad at the mall. Doah could not possibly draw that kind of conclusion, given his mental capacity. So, option three was taken by the court, and a year later the DA himself requested that the case be withdrawn and the records removed.

How blessed we were that God had a third answer. How happy I am that I did not ask for one of the only two options that I knew about. (I suspect, though, that if I had asked for one of those options, God would still have introduced the third, better, one.)

So, yes, I say to my catechism students, God does say "no," and we should be grateful that God knows best!

Amazing Power of Prayer

Marvels of marvels and miracles of miracles, something happened this morning that I never thought I would see. Never. Because I did not have as much faith as I should have had.

Donnie and I will celebrate our 40th anniversary on March 20. Complications, however, have arisen in celebrating it. First, March 20 is the only time that the university students in Lithuania can do the review session for the course I taught there the last two weeks, and they need one. Moreover, March 21 is the only day that they can take their final. Given the 10-hour difference between our countries and the plan to have the students do the final review over Skype and the final (monitored by the department chair) in the computer lab, emailing me immediately their answers, my presence is required in both instances in the late evening hours, ending at midnight. So, while I can be free during the day, I need to be at home, with the proper computer equipment at night. Any plans that Donnie and I would have liked to have had to take a trip (we have dreamed of a special trip for our 40th anniversary for some time, entertaining a number of different exotic locations, among which it had been difficult to choose) cannot be accomplished on the actual date. Second, with Shane unemployed, I would prefer to use trip money to pay the next unseen number of months of his COBRA fees, which at $800 a month are well beyond his ability to pay on unemployment compensation, and provide smaller amounts to help with the kids and food. (His umemployment amount covers his rent only.)

So, seeing that our local St. Francis Retreat Center, which is no more than five minutes up the hill from our house, is offering a two-day retreat on Franciscan spirituality March 20-21, I decided to sign up for it. Donnie has agreed to come! We will try to sneak away on the evening of March 20, during the dinner hour, for a private anniversary dinner at our favorite local restaurant.

The process leading to this decision began when Donnie returned from Jordan, an atheist as I had always been, to find that I had had a remarkable conversion experience and was now pretty dedicated to following in the path of Christ and obeying God at all costs. It was not the kind of thing one emails to one's spouse of 30+ years or relates on a phone. So, I had waited until he had completed his contract there, which ended eight months after mine, and then, when he arrived back in California, I shared with him all that had happened.

To say that he was in shock would be an understatement. For nearly a week, he could not even speak to me. He would look at me and mutter, "I cannot get my head around it."

Doah, on the other hand, was delighted. He had been a believer perhaps before he was even born. Who knows, given his significant retardation, what and how his beliefs were formed, but he always exhibited them. However, from the time that he could speak, he evinced not only strong belief but strong connection with God, saying things like "God told me" X or Y. One weekend soon after Donnie came home, Doah was in the car with us, driving to a nearby city for grocery shopping, and spontaneously said a prayer that momentarily got Donnie's attention, "Dear God, Thank you for bringing Mom to You, but You forgot about Dad."

Unfortunately, the effect was minimal and shorter than temporary. I wondered what would reach Donnie, and I knew that he was not the type to be pushed. Moreover, he was still in shock. I had been such an outspoken atheist.

A few months later, a friend visited from Nebraska. We spent every evening walking around Old Mission grounds, a little of it together but most of it separately praying and communing with God. It was during that time that I started begging God to help with Donnie and was told that eventually he would come to believe but that first I must frequently pray with him.

Pray with an atheist? I knew how that would have gone over with me, and I had a pretty good idea how that would go over with Donnie. Nonetheless, convinced that this was the path that God had chosen to bring Donnie to Him, at our very next breakfast together, I insisted that we say grace together. We have continued that pattern for two years now. I have also upon occasion, as I sensed his atheism turning into agnosticism, asked him to say grace (just in case), and he has acquiesced.

Then, last spring my torn rotator cuff was healed instantly during Mass. Doah was there and sensed the same presence on the kneeler with us that I felt touch my arm. When I returned and showed Donnie the totally free movement I had in my arm that had been impossible to move than 30 degrees before I went to Mass, he was again shocked. With the healing confirmed five days later by MRI, his agnosticism began to turn toward a "just in case, perhaps-perhaps not" kind of potentially emerging belief.

Still, he has been unwilling to step closer. I go to Mass alone or with Doah, Noelle, or Lemony (my daughter-in-law who was gladly my sponsor), when they are visiting, or even sometimes with a friend.

Nonetheless, Donnie has spent time with Fr. Ed and Fr. Barry, when they have come for a family or other event. They don't push him, either, and I try to follow their model of just being an example. I have also tried to be steadfast in praying for him and, as God urged, with him, relying on God to take care of the rest.

And so today, I am the one in shock, pleasant shock. (The shock pricks me, though, in thinking that had I had greater faith, there would be NO shock. Nonetheless, I am happy, indeed. Yes! A spiritual weekend together! What better anniversary gift could there be?A

"Take Him Home"

I picked up Doah, my mentally challenged youngest son, at his group home yesterday evening for the Easter vigil at Old Mission Church here in San Ignatio. It is always a beautiful service with the lighting of the paschal candle from the fire pit by the garden and then the lighting of everyone's candles from the paschal candle. It is an evening of hope and expectation, a movement from dark into light. So much symbolism in one Mass!

Doah looked forward to it because his friend, Bennie, would be there. Bennie is one of my friends who has adopted a mentor/father attitude toward Doah, always ready to talk to him, taking him fishing, and hanging out with him at times. Doah adores Bennie and loves sitting with him at the mission. Doah could hardly wait for the evening to arrive.

So, decked out appropriate, Doah and I arrived promptly at the mission at the starting hour. The church was quite filled, but Doah easily found Bennie and slipped in beside him. Then we all exited for the beginning of the Mass around the fire pit. After our candles were lit, we paraded back inside and listened to the opening music and readings.

As I sat, listening and enjoying this once-a-year-only Mass, Doah slid into the pew beside me. His eyes were watery.

"Mom," he said, "I can't stay. I am allergic to the church."

We had experienced this before. The mission is 200+ years old, and Doah is allergic to mold. There are times that it seems that mold must be getting into the air. At the end of a week that had seen some rain in our normally near-drought, could-easily-become-desert area it was not surprising that perhaps more mold than usual was breaking out into the air.

"Shh," I told Doah. "Wait a few minutes and see if it the problem passes. Don't rub your eyes; just wait and see if they clear up." I did not have much hope that he would get better, but it was worth a little wait, anyway, or so I thought.

No sooner had Doah disappeared toward the front of the church -- I was farther back -- to rejoin Bennie than I heard that Voice I have come to trust and obey say, "Take him home."

When Doah popped up beside me just a few minutes later, still with red, watery eyes, and complained that he was not getting any better, I did as I had been told. I took him home.

Once we were in the outside cooler air, Doah's eyes cleared up. I could have called Donnie to pick us up, but the night was clear, cool (but not cold), and just the right place to spend some time walking together with Doah in the presence of God. (One immediately feels God's presence anywhere in San Ignatio.) And so Doah and I walked all the way home, about a mile or less (never have measured the distance from our home on the hill to the mission in the valley), mostly in silence, mostly in worship, our own little worship service.

How kind is God, I thought! He gave us an alternative way of spending Easter vigil and one in which we were as close to Him as we would have been had we stayed for the entire Mass. Clearly, worship is not about ritual, it is about relationship. And that was made clear in the words, "Take him home." Taking Doah home was not about walking away from God but rather about walking with God. It was a very good Easter vigil yesterday after all.