Rest in Peace, Little Angel

Since Noelle's husband Ray and cat Prince Shadow died within weeks of each other in 2010, Noelle has had a difficult time of it until she adopted two darling orange tabby kittens, male and female (which necessitated a trip to the vet so as not to have a whole family of darling tabby kittens). She called them Angel and Tiger.

Unfortunately, this morning she called to say that Angel, barely a year old, had died. Of what we don't know. I don't even have a picture of Angel, but she looks somewhat like the kitten above. Apparently, Tiger is frantic -- does not understand why his twin is not moving.

Please pray for Noelle. It is hard to go through this kind of loss again so soon. She is taking it in stride, but except for the kittens (and, of course, family -- although not close by), she is pretty much alone.

Cats, at least, for my family, are an essential part of our lives. I realized this quite deeply this weekend. I have been sick in bed -- cannot remember when I have been this sick -- for four days (aftermath of a pertussis vaccination), and my cat Murjan has not left my side!

Make Your Desire the Other Person's, Too

People quickly acquiesce when there are no other options. Getting your own way is usually as simple (and complex) as making your option the only one possible. I have watched two of my own children as middle schoolers do that quite effectively.

Each time we have moved into a new school district the tendency had been to place Noelle in special education because of her paraplegia. However, she preferred to be in regular education and was able to handle the academic work there quite well. When we moved to California from Washington in Noelle's eighth grade year, the school administration's proposal was once again to place her in special education.

When Noelle indicated her preference for regular education, the principal explained that all children who cannot walk had always been placed into special education, and, therefore, she would, too.

"Well, then," Noelle commented, "I wonder how you are going to handle the problem that comes with that placement."

When the principal asked what problem she was talking about, she said, "Clearly, I'm the one who has to go to the classroom every day, and I do not intend to go to that one." She was placed in regular education and was very happy there.

The principal met his match, as well, in her younger, gifted brother Shane, who was in her grade because he had skipped some earlier grades in school. The principal wanted to place Shane in the Gifted and Talented Education (GATE) program. however, Shane looked through the materials and found them unchallenging. He preferred to make his own program through the Independent Study program. Frustrated by Shane's lack of appreciation for the GATE program (and probably feeling the need to have another GATE student in the school program), the principal explained that being in the Independent Study program would bar Shane from school dances and other such activities. Shane replied that he preferred books to social activities and willingly accepted that restriction.

Seeing that his words had no effect, the principal said in a rather frustrated tone, "You don't understand! You have to have a behavior problem to get into the Independent Study program!"

Very calmly and pleasantly, Shane indicated that he would be willing to meet that entrance requirement, saying, "I could develop one if you would like." He was placed in Independent Study and was very happy there.

Noelle made her option. Obviously, no one could physically force her to go to a particular classroom on a daily basis and monitor her to be sure she stayed there all day. The alternatives to her choice were simply too cumbersome, impossible, or undesirable.

Shane also made his option the only choice. Of course, the principal did not want another child with a behavior problem. He could avoid that in only one way -- by meeting Shane's request.

These two children very much enjoyed their middle school years. Noelle learned far more in regular education than she would have learned in special education and passed the state exams just fine for regular education students. Shane immensely enjoyed his learning situation. His teacher had been a gifted education teacher in earlier years and was one of the few teachers who did not fear Shane's ability to inhale information and question assumptions. For math, the teacher asked Shane to work with a tutor from the local college because Shane learned too fast for the middle-school teachers to keep up with him. She learned incredible amounts of math that year, in addition to completing most of the high school program in other subjects -- all while being in a "punitive" program rather than the GATE program that, ironically, would have asked far less of him. It was, indeed, a good year.

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

Noelle Has a New Bed

It seems that we have beds on the mind these days. Not long ago I wrote about Doah's bed, which Doah used as late as New Year's Eve, staying overnight in our guest room, ostensibly to see the new year in but in reality getting a good night's sleep instead while Donnie partied alone. (I, too, fell asleep early.)

Noelle's bed is another matter. It was our Christmas gift to her, and I cannot describe it without writing a mini-commercial for the Number Bed. To do that, I have to go back about six months.

Around nine months ago, Donnie suggested that we look into purchasing a Sleep Number Bed. He and I have separate firmness needs. I have a broken back (compression fracture at the T-5 level in 1980 that had me in a back brace for three months), and I cannot sleep on a soft bed. (Hotel beds can leave me in pain in the morning.) Donnie loves soft beds; his weight makes it difficult for him to sleep on a bed with the level of firmness I need. With the ability of the Sleep Number Bed to split firmness between sleeping partners, it seemed like a good choice. So, off we trotted to the Sleep Number Bed store, where we learned our "numbers." On a scale of 1-100 of increasing fimness, Donnie's "number" was 40, and mine was 100. No wonder we have had trouble sharing a bed for the past 30 years! The Number Bed was not cheap. I blanched at the cost: in the thousands (although a bed can be obtained for less than a thousand, depending upon sleep needs and local sales). Given the 30-day guarantee of return and the offer of credit to spread payments over two years, I figured it was worth trying out. Indeed, it was. I have not had any back pain since; neither has Donnie. The bed has remained.

When Noelle heard about our experience with the bed, she volunteered that she wished she had a bed like that because she was always in pain when waking up in the morning. Not sure whether the bed would be helpful with spina bifida back issues, we nonetheless ordered a bed as her Christmas present. Same deal: return in 30 days if not satisfied. The cost at $1300 was well beyond any amount we had ever spent on Christmas, all kids' gifts together, yet would be worth it if it helped Noelle. Again, we were able to spread out the payments over two years, making the cost manageable. Talk about the perfect Christmas gift! Noelle has spent the past week telling everyone who will listen how much her life has changed now that she has a bed that will perfectly match her firmness needs.

I cannot recall commercializing for a particular company on this blog before. However, in the case of the Sleep Number Bed, I am a fan -- a fan without back pain. (I imagine that there are other beds that will meet similar needs. I did not test out tempurpedic beds, for example.) If any reader or any reader's family members is waking up with back pain, I recommend looking into the possibility that the Sleep Number Bed will make a tremendous difference in your life.

End of commercial...

I Didn't Ask

I had meant a few weeks ago to share an extraordinary event that happened a few weeks ago, but I got caught up in daily living, which for me means being somewhere other than at home. Noelle, as mentioned in an earlier post (back in July -- my, how time flies), had been having some difficulties with her apartment situation, and how that was resolved was remarkable.

“Ask, and ye shall receive,” we are told. But so many times, I do not ask, yet receive. And many other times, I ask for a little (e.g., strength to bear pain from a medical problem) and receive a lot (e..g., medical problem removed). I wonder sometimes if God does not find joy in giving us more than we expect, anticipate, or deserve.

To recap my concern about Noelle’s apartment situation, she had clearly been being used by a so-called friend (we could not find any behavior that one would expect from a friend) who decided to move in with her and refused to move out. The friend was not on the lease and did not pay any of the rent. She lived there for several months before the apartment manager noticed and told Noelle that the friend had to move out because Noelle was in violation of her lease.

Noelle seemed completely under the spell of this person and was about to get evicted from her handicapped-accessible, low-rent apartment. In the current economic climate, she would neither be able to find something similar nor would she be able to afford something different. Yet, she did not want to talk to Donnie and me about. She said she was independent and would do as she chose. We were further stymied because even the sheriff could not remove her friend without a lengthy process. Once the friend had lived there for a few weeks, she was considered a resident even though the apartment manager had told Noelle repeatedly that her friend had to leave. Truly a mess it was.

Then, the logjam broke. It could have been my telling Noelle that Donnie and I would not help her if she ended up on the street because the situation would have been of her own making. It could also have been the fear of ending up on the street although that had not come up earlier. In reality, I think it was my e-note to Noelle that if she ended up on the street, she might lose her kitty. I think protecting her kitty gave her the strength to stand up to her friend and tell her to leave.

But the friend refused to leave. Noelle contacted me. Donnie and I drove to Salts to be witnesses when Noelle gave her friend a written eviction notice. Explaining the contents, Noelle handed the note to her friend, who refused to look at it, knocking it to the floor, stating that she had no intention of reading the note and that we (Donnie and I) could just put ourselves outside the door; we were not wanted there. Noelle was nonplussed; being in a wheelchair, she could hardly physically eject her friend.

“You don’t have to read the letter,” I stepped up. “There are three witnesses here who are telling you the content, which says that you are required to leave immediately.”

She repeated that she had no intention of leaving, that she could not find another apartment to her liking, and she would be staying as long as she needed to. She raised her voice. Her chutzpah would astonish even the most brazen soul.

Noting to her that she had been given formal notice, we left, planning to call the apartment manager in the morning even though I was flying to the East Coast that day. We were concerned that the manager was getting ready to present an eviction notice to Noelle, and sometimes eviction notices cannot be repealed.

Noelle is an unconserved adult, so we had not been involved in her lease or any other aspect of her life except where requested. And we could not be involved with the apartment manager without her permission. Now we had her permission, and now we saw the whole picture.

As we exited the building, a man, identifying himself as Wentworth, approached us and asked if we were Noelle’s relatives. I have no idea how he put two and two together. We admitted the relationship. Then he told us that he was the assistant manager and lived in that same building. We told Noelle’s side of the story since, under the influence of her friend, Noelle had been incommunicado with anyone in management of the apartment complex. The manager was indeed preparing an eviction notice.

Now that the assistant manager knew the situation, he said the management would help get the friend out, including filing formal eviction papers on her behalf against the squatter. He made a copy of the note Noelle had given her friend, and then he called the police, who showed up right away. While the police could not remove the friend, they scared her.

Later that evening, Wentworth, who had taken our phone numbers, called me and told me that the friend had just left on her own volition. He said that all was back in order with Noelle’s lease, and that the management would keep an eye on Noelle for a while to make sure the friend did not sneak back in and try to browbeat her into letting her stay there. He commented before hanging up how “providential” it was that he had seen us and everything had worked out so easily. He also commented on how surprising God can be and how clearly God watches over Noelle.

That evening at Mass, a visiting priest told us in his homily that we all should ask for God’s help more often and not try to depend upon ourselves. Certainly, I would have prayed about the situation when I got home had I not received the phone call from Wentworth. However, I had not yet had a chance to ask when the actors and actions needed for resolution suddenly appeared on the scene. When you practice the Presence of God in the way of Br. Lawrence, sometimes God, always being with you, answers even before you ask!

(also posted on Modern Mysticism)

God's Trust and My Children/Grandchildren

Recently in our prayer group, one of our members talked about some difficult times she and her family were facing, and she called it a "test" from God. We moved from there to similar kinds of issues in other members' families and then on to a discussion about my children, especially the three (two of my own and one who came and lived with us) who must deal with one or more birth defects (Noelle, Doah, Shura), along with my grandchildren who have also been affected by these family "gifts" (Nathaniel having been born with hydronephrosis and Nikolina with that, too, as well as OEIS Complex). It surprised me to learn that these people of God looked at my children and my family situation so differently from the way I look at it.

First, my children are not burdens. They are blessings.

Second, life with these children is not difficult although it is challenging. It is a constant opportunity to learn and to grow, including learning how to lean on God and others God sends, which, I believe, is something that God wants us to do.

Most important, in no way do I think that God is testing me or my family. Rather, I feel favored that God would trust me (of all people) with something so special. Likewise, I don't believe that my friends are experiencing a test from God. I believe that they are experiencing God's trusting them not only to cope with the difficult situations that they face but also to learn from them and to grow in faith (and yes, trust).

May God continue to bless all of us in this extraordinary way, and may we learn and grow and live up to His trust in us!

The Value of Flattery

The below text is one I just posted on Mahlou Musings, an excerpt from a book I wrote several years ago. I thought, since Noelle and Doah, occupy front and center in the text, it might also be worth sharing on The Clan of Mahlou.

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 example, 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.

Think Challenge, Not Impossibility

Once again, I have posted a "musing" to Mahlou Musings that seems to fit here in the clan space as well. So, here is that thought -- it comes from my 2003 book of vignettes.

"Where there's a will, there's a way" is the line written under the picture of a mouse pulling an elephant up a hill. That picture has hung on my wall for a very long time. My friend and former roommate, Katie, gave it to me years ago because she thought it exemplified my attitude toward life. She's right. It does.

When my daughter, Noelle, was very small, she would occasionally say, "I can't." That, to me, was not the appropriate response to a difficult situation even though she was paraplegic and coping with a few other problems, such as epilepsy and hydrocephalus (water on the brain).

"No," I would tell her. "Can't is not the word you are searching for. You want the word, how, and the question, how can this be done? Think challenge, not impossibility. Where there's a will, there's a way."

As a young child, she learned this lesson very quickly, perhaps partly because it fits her own instinctive philosophy of life. Slides of preschool Noelle feeding the cows on her grandmother's farm, slopping the pigs, riding the tractor with her Uncle Will, and swinging on gliders with her very young aunts, Sharon and Victoria, were used in a multi-conference presentation by her neurosurgeon on the topic, "What Spina Bifida Children Can Do."

Noelle was lucky. She met other people who thought challenge, not impossibility. When she wanted to learn to roller skate because her kindergarten class went roller skating once a week at the next-door roller rink, Andi Kush, her physical therapist, did not say, "Paraplegic children cannot roller skate."

She said instead, "Well, we have to figure out a way to do it safely. Crutches and roller skates are not compatible." She recommended a walker with rollers on the front and rubber tips on the back, and that worked just fine.

The guard at the roller rink also thought that a mouse could pull an elephant up a hill. When Noelle became discouraged from multiple falls, he did not say, "Roller skating with braces and a walker is probably too hard; don't worry about it."

Instead, he come up to her outside the rink and sat down beside her. "I've been watching you," he said. "If you keep up that hard work, one day you'll be a champion."

Reinvigorated, Noelle pulled herself back up from the bench. Pushing her walker ahead of her, she skated back into the rink.

Many students who might have failed have graduated from programs I have directed because teachers thought challenge, not impossibility. "Can't is a word that I don't understand," I would tell any who claimed that a student could not learn and needed to be disenrolled. "Figure out how the student learns and teach him or her that way."

Figuring out how students learn has led to drastically reduced attrition rates in my educational programs. That attitude led to the graduation of proud students who might otherwise have left or been disenrolled and demoralized. What the teachers and I learned in that process has led to articles, book chapters, and books, sharing that information with colleagues around the world. It has also led to my conducting seminars on that topic in many countries, often team-teaching with some of those teachers who made the discoveries with me years ago.

The most recent example was with Doah a decade ago. Due to his mental retardation and very low IQ, our local public schools refused to teach him to read anything but highly functional words, such as exit and toilet. Teachers and administrators told me routinely that reading was an inappropriate goal for him. After he graduated from high school, he began regular tutoring sessions with a former elementary school teacher, Julie, who had a different attitude. As a result, he began to read real books, ultimately writing one with my help that was featured by the press at the National Book Exhibit in Los Angeles in 2003, where he spent some time as an author, signing books for visitors.

"After I gave up trying to teach him the standard way and my way," Julie told me, "I paid attention to how he learns, and I began to teach him his way. That worked." Of course, it worked. It worked because she was thinking how, not can't. It worked because she was thinking challenge, not impossibility.

Taking a Broader Perspective

Another shared post -- this one from Mahlou Musings where, among other things, I post excerpts from a book of vignettes that I published in 2003. Since the post included both Noelle and Shura, whose stories are part of the life of the clan of Mahlou, I thought it made some sense to double-post in this case.

Far too often, we consider the impact of the moment only. How things affect us right now tends to be more important than how they fit into the bigger scheme of things. In fact, when one is irritated, angry, disappointed, or threatened, it is very difficult to see the larger picture. Yet, that is precisely when it is most important to keep things in perspective.

My younger daughter, Noelle, copes with spina bifida, a neurological defect that, among other things, has left her with full paralysis below the waist. However, she has nearly always kept matters in perspective. Taking a broad perspective has allowed her to lead a fairly normal life -- attend local schools, go to college, work part-time, play (including roller-skating), and the like. In fact, her ability to take a broader view of things has at times quite surprised the medical profession.

A few years ago, she was sitting in a wheelchair, not paying much attention to her feet. First, she was not used to a wheelchair, having used long-leg braces for ambulation up until that time, and second, she does not feel her feet. As a result, when she accidentally caught her small toe in the spokes of the chair's wheel, she did not notice and ended up tearing the toe nearly off. Amputation was the only resolution of the problem.

Clearly, the doctor who amputated felt sorry for Noelle and wanted to help her through her feelings of loss. However, Noelle had no feelings of loss.

"Are you missing your toe?" asked the doctor. What she meant to ask was whether Noelle was feeling bad that the toe had to be amputated.

Noelle, already looking at the situation from the broader perspective, took the doctor's words literally. "Yep," she replied. "It's all gone."

Somewhat taken aback, the doctor clarified. "No, I meant, do you miss having a toe there?"

To that Noelle replied, "I have never felt that toe. How can I miss something I never knew I had?"

I learned the lesson of acting within a broad perspective even more dramatically from Dr. John Blanco, an orthopedic surgeon at the University of Virginia Hospital (referred to in some of my writings, those that are pseudonymized, as Virginia State Hospital). At the time, I was the American guardian for Shura Ivanovich, who illustrated my vignettes book. I had brought him to the United States from Siberia, where he was not being adequately treated for spina bifida. Like my daughter's, his legs were also paralyzed but not as extensively. He was able to ambulate with crutches alone. However, as a result of inadequate care, both of his legs had become gangrenous, and the flesh on his feet had been eaten away.

Bringing Shura to the United States took nearly a year. The American Embassy in Moscow required incredible amounts of paperwork -- notes from the doctors in Siberia and notes and faxes from American doctors. Even then, the visa was denied, and I went to Moscow personally to intercede. Some of the embassy personnel were former students of mine, and they vouched for my sincerity and honesty to the consular officers. Finally, we had the visa, but Shura's condition had worsened. He was in the hospital. It took another couple of months before he was stable enough to move, during which time the gangrene worsened.

Once in the United States, Shura's first need was orthopedic care, which Dr. Blanco donated. What was needed was unfortunately very clear: a double amputation. The gangrene by then had taken over both legs, requiring amputation at the knee for one leg and amputation at the calf for the other. Shura took it in stride and readily gave permission. I, however, was devastated. I had to know the impact of the delay in getting the visa on the need for amputation.

"Could you have saved Shura's legs if we had brought him here a year earlier?" I asked. I thought I knew the answer. However, Dr. Blanco understood what was behind the question and gave me both an honest answer and a broader perspective.

"Perhaps I could have saved one of the legs," he replied. "The other leg was probably in poor shape even a year ago although I might have been able to save more of it. The important thing, however, is not whether getting him here earlier would have saved his legs. Rather, getting him here now saved his life."

A leg or a life -- that is a rather vivid way to describe what a broader perspective means.

What to Do about Noelle?

Noelle, maybe not unlike many people, has moments of sheer brilliance, where she has overcome all kinds of odds to do things that most handicapped individuals don't dare consider, such as learning to roller-skate with chest-high braces and a walker as a child, and moments of sheer stupidity, where any logic behind decision-making is tidal-waved away by a churning sea of emotion. A call last night from Molly, her part-time caregiver, who helps her with laundry and housecleaning a couple of times a week, revealed the latest maelstrom. Noelle is about to be evicted from her low-cost, handicapped apartment, to which information she has reacted in aggressive and self-destructive obliviousness. "Won't happen," she told Molly. "And don't tell my parents; they will try to do something about it, and I plan to wait it out."

Here is the back story. After Ray died and then Noelle's cat, Prince Shadow, mysteriously died at a young age, Noelle was alone. She would not admit to being lonely, but then Noelle never admits to anything she thinks will make her look weak -- and as an extrovert par excellence, being lonely would certainly seem like a weakness. Nonetheless, she clearly was lonely. She had given up everything -- school, potential career -- to be home with Ray, who, for more than four years, spent the last days of his life in and out of comas and hospitalized in one venue or another. Although we suggested to Noelle that she could now return to school, finish the college degree that she had started years ago, and find a career for herself, Noelle was not ready to make such a drastic lifestyle change.

Before she could develop any readiness for moving on, along came Dreamee, a friend of a friend. Dreamee floats through life on other people's clouds. We do not know if she has any relatives, but we have heard that she has a godmother somewhere in the area. She does not talk about her past or even her present. She clearly has some disabilities -- she is very tiny for an adult in her thirties, her teeth are in bad order (but that could be from not taking care of them), and her face has a haunted look to it (but perhaps that comes from chain smoking). Dreamee and Noelle developed some immediate rapport, and Dreamee within days had moved in with Noelle. She pays no rent and does not help out in any way that we can see. Molly says that she now does Dreamee's laundry, too. I suppose none of that is any of our business, except that Noelle has in the past been used by people who learn that she is so good-natured and selfless that she will give away her last dime if someone else says he or she needs it. (In fact, we found out a while back that she was giving away every penny left over after paying bills every month, literally amounting to hundreds of dollars, to a "friend." It took us almost two years to convince her that a "friend" does not show up at your door right before payday, asking how much money you still have from the previous payday and demanding to have all of it because she is in tremendous need of it.) Now, there is Dreamee, who is, in essence, freeloading, but were we to use that world, Noelle would be terribly offended.

The matter has come to a head, though, because Noelle is in Section 8 housing, which is all she can afford, and the landlord has learned that Dreamee is living there, too, in a one-bedroom apartment. The landlord has sent a letter, demanding that Dreamee leave immediately or Noelle will be evicted. (Molly has seen the letter and is going to get a copy to me.) Noelle has told Molly that she has no intention of responding to the letter -- and certainly she has no intention of asking Dreamee to move out. So, something will come to a more frightening end here very soon if Noelle does not pull her head out of the sand.

The more complicated part of the matter is that Noelle has told us nothing. She acts like life is all hunky dory. Molly does not want us to let Noelle know that we know. She is afraid that Noelle will not only be angry at her but also fire her as her caregiver. That would be truly bad -- but within the realm of Noelle's more illogical responses to situations she does not like -- for finding another caregiver like Molly, who really becomes involved and tries to help, would be difficult.

The core of the situation seems to be Dreamee's hold over Noelle, who, at times, has told Molly that she really does not want Dreamee living with her but that Dreamee insists. Then, after Molly has left, Dreamee seems to take over and when Molly returns, Noelle contends that she does not want Dreamee to leave and Molly must have misunderstood. Clearly, the situation is driving Molly nuts, but more than that, Molly is genuinely concerned about Noelle's welfare.

So, what to do about Noelle? She does not want us to know, but we do know -- and I would rather do something now and not after she has ended up on the street. How to help her keep her independence while wanting to help out? How to break up a destructive relationship without appearing destructive ourselves?

Moreover, Noelle's dilemma has appeared during a moment of depleted resources for us, having just forked over more than $2000 last week to Lizzie for cat surgery and helping out Shane to the tune of $600 or more each month since he is still coping with a lowered salary from having been fired when Nikolina's $2 million hospital bill was too much for the insurance company at his place of employment to handle (the company refused to provide policies on any employees unless Shane was removed from the group).

Has anyone seen a similar situation? Any ideas for a creative and supportive resolution?

Remembering San Diego

Donnie and I spending time with Fr. Julio in San Diego this last weekend brought back a host of memories of the days when Lizzie, Blaine, and Noelle lived there. They are now scattered into three locations, so the memories evoked a sense of nostalgia for a simpler time (or maybe it just seems simpler in retrospect). I will share of few of the many memories that flooded us during our three days there.

First, there was Angel. Noelle and Lizzie moved to San Diego a year before Blaine joined them. We had no idea where were the good and bad parts of town, safe and not safe areas. We did know where the areas were that they could afford the rent and where they could not. Where they could afford afford the rent was not as comforting to me as their mother as were the areas where they could not. However, the manager of the apartment complex upon which they ultimately decided reassured me, promising to watch out for them as if they were his own daughters. His name? Angel. I figured that was a good a sign.

While Angel was watching over them, I did not worry about them. Then Blaine moved to San Diego, and life became more interesting (for all concerned).

For starters, there was the time that the kids were coming home to visit. Lizzie called me as they were leaving San Diego so that I would know to plan for their arrival and just because parents like to know these things -- where their kids are, when they are leaving for home, and all that stuff. Several hours later, Blaine called to say that they would be home in approximately an hour. I did a quick calculation and remonstrated, "You had better not be!" because that meant that they had been driving too fast for my comfort. Two hours later, they showed up. "That's more like it," I told Blaine. "I thought you could not be only an hour away." Lizze later pulled me aside and told me that they really had been only an hour away, but they all decided to sit beside the road for an hour so I would not be unhappy with their arrival time! (Kids!)

Then there was the time that we had just spent a small fortune on new glasses for Shura. (He brought very little with him from Siberia, so there were many new supplies to be acquired for him, including some very important things such as eyeglasses.) He was quite proud of those glasses, and we did not have to enforce his wearing them. He always did. In between surgeries in Charlottesville, Virginia, where we had been able to set up his care with the help of a philanthropist, John Kluge, a wonderful man who died earlier this year, he came "home" to California and decided to spend some time in San Diego with Lizzie, Blaine, and Noelle. I should not have been surprised by the phone call later that week because there was something scatterbrained about Shura. Maybe it is simply the artist's temperament. In any event, Blaine and he were cruising along the coast, enjoying the sun and wind, and Shura, not used to cars, stuck his head out the window to feel the greater effect of the wind. Whisk! His expensive eyeglasses were gone with the wind, literally. Chagrined, he had to go get a replacement pair. (Kids!)

Then there was the time that Noelle took the wrong bus home. Her trip turned out to be a different kind of joy ride from that of Blaine and Shura. A bit ditzy at times, Noelle, realizing that she did not recognize the areas the bus was traveling through, decided to stay on the bus until she did recognize something. It never occurred to her that she was on the wrong bus. Well, the bus finally reached the outskirts of town and stopped. End of line. It was nor returning. End of day. So, Noelle hopped off the bus, in her braces, with her crutches, carrying her backpack, and hitchiked back into town. Some kind man picked her up and brought her all the way to her house, where Lizzie proceeded to give her quite a lecture on the dangers of hitchhiking (although one thing I have noticed with handicapped children: they bring out the best in people, and rarely do the "bad guys" want to "mess" with them -- I think God keeps a pretty close eye on them. (Kids!)

Of course, if I can complain about kids (!), then I guess they should be allowed to complain about parents (!). When the kids were living in San Diego, I was working on a couple of books for publication, and I loved using Lizzie's library (University of California at San Diego) for research. So, I would visit quite frequently. In the beginning, Lizzie's supervisor at work (she worked in the bookstore while going through college) would offer to give her the day off so that she could spend time with me, but Lizzie would tell her that I had come to visit her library or that if she visited with me she would end up helping with research (which she did not mind doing, but she preferred earning money from working more), so soon her supervisor stopped offering, and Lizzie and I and the other kids just spent evenings and weekends together -- and even on some of those occasions when I had a close deadline, they all ended up helping me with library research. I am sure that their response would have been: Parents!

And the bottom line? The kids needed the parents, and the parents needed the kids -- and the complaints were all just in fun (well, mostly).

My Children Are Unnumbered

I suppose you could take the title of this post in more than one way, and it would be accurate. I have four birth children, three others who moved in as teenagers, and four more young adults from the Middle East who call me Mom (and treat me like their mother) but never lived with me. And the number of them grows...

What I am referring to in this post, however, is the tendency that was rampant in my children's growing-up years to put a number to each child. That number, his or her IQ, then let him or her enter programs or denied him or her entry into programs. Control by number was the game of the 1970s and 1980s. It continues today, but at least is disappearing in many parts of the country. More and more educators and parents are beginning to realize that our children are more than numbers. Take my children, for example, who, by the way, for the most part, were never numbered by school systems or anyone else who might use the number to their disadvantage or to their advantaging over their peers. I would permit neither the use of IQ for program selection with them nor even testing them for IQ by the schools, but I did have insights into what their levels were and in three cases actually know the number the schools would have attached to them had they had the same information I had.

Lizzie, the oldest, learned much about life very early because of two multiple-handicapped siblings. She probably is gifted. She skipped two grades in school, and by the time she was in fourth grade was studying genetics as a hobby, sat through my university classes when babysitting was unavailable, and was taken into the university honors biology program (the only non-university student there). I could trust her with anything. The Red Cross trained her in CPR at age nine (four years younger than their 13-year-old prerequisitebecause she convinced them that she needed to be able to save Doah, who had a trach at that time, if he stopped breathing while I was in the bathroom); she was their best student (that had a lot to do with real-life, immediate applications of knowledge, I am sure). In fourth grade, her teacher, who had been reading Tennyson with her, proposed her for the gifted program, but that required an IQ test. I demurred because the gifted program was only part-time, would not stretch Lizzie enough, and would serve only to mark her as different from the other kids. I did take her on my own to a psychologist to satisfy my own suspicions that her learning styles (especially reflectivity instead of impulsivity -- we in the USA equate speed with intelligence, erroneously, in my opinion) would result in an inaccurate representation of her potential. It did. At least, it did to the extent that the test could even be scored. Lizzie, in pure Lizzie fashion, refused to give in to those parts of the test that required her to respond in a way inconsistent with her learning style. She is concrete by nature and needs to work from within context. When she was asked to define a list of words, she refused, commenting "words do not exist out of context; give me a context, and I will define them." Keep in mind that this comment from a 7-year-old, whose ultimate score turned out to be high average (probably inaccurately so). In high school, based upon performance and given the fortunate lack of an IQ score in the files which would have held her out of advanced courses, Lizzie was placed in the gifted group, working a year ahead of grade level (on top of skipping two grades), and by the age of 15 had taken two college courses and seven Advanced Placement courses in foreign language, math, and science. Today, she holds a doctorate as a professor of cognitive neuroscience. Not bad for high average IQ!

Noelle, of course, experienced some of the traditional difficulties that spina bifida children with hydrocephalus and Arnold Chiari malformation encounter: specific brain damage from placement of the shunt that destroys the part of the brain that deals with higher mathematical functioning. Nonetheless, Georgetown University Hospital at one point decided that it would be helpful to have an IQ test for her. Her IQ at that time was flat average: 100, just a few points behind Lizzie. However, because she was physically handicapped, she was denied placement in all but special education programs. We sometimes fought successfully to keep her mainstreamed; other times we lost that battle. In fourth grade, because she was in special education, she was excluded from the school's spelling bee. The next year, I began the fight early, she was allowed to participate, and she won first place. Nonetheless, during her years in special education, her IQ slipped down into low average levels; the hospitals, not the schools, tracked it for us, mainly out of curiosity as to how good and poor education and availability and lack of educational opportunities can affect IQ. Clearly, it can, when one compares Lizzie and Noelle, who started out so close. Noelle did complete two years of college, then dropped out to be with her significant other, Ray, who died earlier this year. Now that nine months of mourning have passed, she is working on returning to college. I suspect that in spite of being flat average, she will do fine, as she did in her first two years.

Shane began life very inconspicuously. Situated in birth order between two multiple-handicapped siblings, he pretty much raised himself due to our lack of time to spend with him. I usually found out after the fact what he could do. For example, at 23 months he could read books -- he read one to me; it was the first time I heard him talk (and he was not yet walking because Noelle, who could not walk, would pull him down whenever he stood up, afraid that he would hurt himself). At age 3, when we put him in the university nursery school, the administration moved him the next day to first grade since he was not only reading but also understood science and was able to do math calculations at fourth grade level. By the time he was seven and in the fifth grade, he dropped out of school. We took him to a school clinic for diagnosing educational problems. The answer: too gifted to be educated by public schools. Although we asked that the total IQ score not be added up and our wishes were observed, we were told that no one had ever before achieved a perfect score on the Wechsler math section. So, after money ran out for an ungraded private school, Shane grew up in homeschooling at a time when homeschooling did not yet exist. He studied with college professors, went off to college at 14, and is clearly my best-educated albeit least educated child. IQ unknown.

Contrary to my wishes, Doah's IQ was tested: 52. Two points above the category of "moron." We paid little attention to that. He was fortunate that our push to make sure he had only good teachers saw results. Our "near-moron" lives in a nearly unrestricted group home, was voted "class flirt" in high school (he was the most popular graduate that year -- no one will deny that assertion since his popularity made the front page of the local paper), is semi-lingual in five languages, can take care of all his personal needs independently, travels independently by bus throughout the county, and wrote a book that was exhibited at the National Book Exhibit in Los Angeles in 2003. He loved autographing copies! When his HOPE helper left, I overheard the departing helper say to the incoming helper, "This is a case of the greatest delta between potential and performance that you may ever see." That is probably because we chose not to react to Doah's number.

Blaine had obviously been numbered before he arrived to live with us because he attended the gifted program at the local high school. We know he is also dyslexic, but he manages to keep that under control as head of IT at one of the branch campuses of the University of South Carolina.

Ksenya and Shura have no numbers. Raised in the USSR, where all children were taught with equal expectations of full performance, they never encountered the need to be numbered.

So far, my grandchildren have not been numbered. Their school district appears more enlightened than ones of the past.

Now, I mean no offense meant to educators. After all, I am one myself (my organization is one that hires teachers and focuses on education). I understand why teachers, educational administrators, and school districts like to be able to label, categorize, and "file" students. It is easier and less messy than having to deal with each student individually in accordance with his or her learning strengths and needs. The latter, though, is the only way that every child will reach his or her full potential. Not leaving any child behind is not really the point. The point is for all children to enjoy learning and experience success in learning, and even special education children, taught in accordance with their learning styles and needs, can do that.

Even more important, though, are the traits that go beyond number: trust, resilience, kindness, problem-solving (rather than problem-creating), forgiveness, compassion, insight, faith -- those things that come from the grace of God. I don't care what number my children have. I care that they possess these other traits. I care that they are Good Samaritans. While I have been proud of their better school moments, I am prouder as I watch them sometimes literally go 200 miles out of their way to help friends and classmates. I have watched them accept foreign children into the family as brothers and sister, not complaining about the significant amount that they had to personally give up in order to accommodate their additional "siblings." These things are enough for me. I don't feel any need to know their number because God's graces come without number, innumerably.

The Worst Is the Best

A while back I was attending a First Friday gathering where we had an interesting experience-sharing activity. Fr. Gavin asked us to write down for later sharing the best things that ever happened to us (and the reasons we considered it the best thing) and the worst thing that ever happened to us (and the reasons we considered it the worst thing). As I reflected on my life, pondering over what really and truly I would consider the best thing and what I would consider the worst, I stumbled against a dilemma: the best thing and the worst thing were the same thing! I didn't think that Fr. Gavin would expect that particular outcome, and when I shared my thoughts, his stunned surprised indicated that he clearly had not considered that the best and worst things might be the same, but he understood my reasons for saying this.

I identified the birth of Noelle, with her array of birth defects, as the worst thing that had happened. This was not the cute, cuddly baby we had expected. In fact, it would be some time before we could even pick her up because she had to be airlifted out of town and run through a series of surgeries. Thirty years ago, surviving spina bifida, epilepsy, Arnold-Chiari malformation, paraplegia, and hydrocephalus, along with some of the surgeries done to manage her life, such as a colostomy, was not as likely as it is today. Never, though, is it easy to handle all the physical, psychological, emotional, educational, relationship, etc., etc., needs of a handicapped child. Learning that my perfect baby had some imperfections in the eyes of the world, at least in the eyes of the medical world was not the best moment of my life.

Or was it? I could not think of anything better that had happened to me. Through Noelle, I learned much that I would never have known. Through her, I became ready to mother Doah. Through her and Doah, our family bonded, our able-bodied children learned compassion, and all our children learned a lot about creative problem-solving as we struggled to figure out ways to incorporate all our children into all our activities (e.g, traveling, hiking, roller-skating -- even paraplegic Noelle learned to roller-skate, braces and all). None of them are afraid of life because they have met it head-on, thanks to unique situations that first Noelle, and then Doah, and the Shura introduced us to. And, of course, thanks to Noelle and Doah, we were all ready to open our home and hearts to Shura when the time came.

Interesting, isn't it? Just when we think something really bad has happened, God puts it all into a different light, using it for good, and showing us the very worst can actually be the very best.

Outdo God? Impossible!

Yesterday, Desiree, the young woman who has been sharing the apartment with Noelle since Ray died in January, called Donnie, quite upset. The apartment manager was kicking her out because the apartment was rented only to Noelle. (Ray did not live in that particular apartment; he did not even visit because Noelle rented it after he went into a coma in 2006 and was in and out of a coma from then until he died this year.) There being no other option, Desiree is now looking for another apartment.

She called Donnie because she is Noelle's age, does not have local parents (is not in touch with her parents at all, as far as we can tell -- we don't push her for information), and has adopted us as family in loco parentis, calling us Mom and Dad. She has enough money on a monthly basis to pay for an apartment of her own, but she has no savings. The typical $200 security deposit for the size and location of apartment she was considering was out of reach for her. She wanted to know if she could "borrow" the money from us, "borrowing" in this case being a euphemism of asking us for a gift for there is no way she will be able to pay it back and we would not expect her to do that.

The timing of this call was particularly bad. I gave Lizzie 25% of my salary this month because the summer courses she was supposed to teach at the university were underenrolled and did not run. I give Shane 5% of my salary every month. It is not a lot, but it helps bridge the gap between what he earns at CHP and what he used to earn before he lost his job with the city police department. Doah always needs something since he makes only a pittance at the sheltered workshop, and this month those needs were more than $100. Beyond that, I had used God's credit card to send $300 to Wajeeha in Pakistan (an expense I fully expected would be paid back without any effort on my part -- and in the three days since I sent the money, all but $25 has come in from unexpected sources, as is typical with God's credit card).

Hm, what to do? I pushed the budget around this way and that way, but little seemed to help. Water, which is very expensive here in our arid region, and rent are both due from this bi-weekly pay check. There just simply was not a spare $200 to be found. I contemplated using God's credit card for this. After all, Desiree seemed like a person in trouble, and usually that is what God's credit card gets used for. However, I do not put God's credit card to personal use, so somehow this particular need of Desiree's did not feel right. Would God want me to use the card for this? I wondered about that even as I told Donnie, with a bit of uneasiness, that he could call Desiree in the morning (this morning) and agree to the $200.

God answered my question within a couple hours of my getting up in the morning. On the way to work, I had to run into the post office in the morning to pay the box rent, so I picked up the mail. There I learned that my uneasy feeling was not without basis. I must be going to need God's credit card for something else in the near future because in the post office box, when I checked for the mail, lay the answer to my question: a check for $202 for royalties from one of my publishers, almost precisely the amount Desiree needed, arriving a month earlier than the publisher typically pays. In fact, there was also a note from the publisher in the box, saying that the check would be sent at the end of September!

So, I could use the unexpected check for Desiree's need. That lets me save God's credit card for whatever is out there awaiting me for its use.

Family or Orphanage?

I made a phone call tonight. Padre Julio called me from San Diego, saying he needed me. That voice mail landed in my iPhone at the same time that a text message popped up, "Mommy, I need you."

No, Padre Julio was not calling me Mommy; that was just coincidence. The latter, simultaneous message had come from Noelle's roommate, Desiree. The message took me back to a Facebook exchange yesterday. My kids, both the birth kids and the non-biological offspring we took in, are in continuous contact with each other on FB, and, given the nature of FB, I get to eavesdrop a lot on them -- more than I ever could when they were growing up!

Noelle had written to Lizzie, who may be visiting next month, asking her to stop by and meet her new "sister," Desiree. Desiree has, indeed, adopted us as family. I have no idea as to where her real family is or if she even has any relative who is alive. She never talks about her relatives, and I don't pry. Well, at least I have not pried yet. Noelle commented on FB that she wanted Desiree to meet the rest of the family.

Lizzie responded, "What family? The Mahlou clan is not a family; it is an orphanage." She, of course, was speaking tongue-in-cheek and quickly agreed to drop by and meet Desiree.

Actually, Lizzie's comment may not be far from reality. In addition to our four children, Donnie and I have taken in several others, and we continue to acquire "offspring." When our kids were teenagers, stray teenagers moved in with us, hailing from the local barrio (Blaine), suburban Moscow (Ksenya), and Siberia (Shura). Then, when our children became young adults, they brought in-laws and, most lately, Noelle's roommmate. Also, as I traveled the world, I managed to gather in four other young adults from Iraq, Jordan, and Bahrain, who, for one reason or another, call me Mom as well as call whenever they need help of any sort or want to share a special happiness or success. I am in near-daily contact with my entire "clan."

And then there is Padre (Father) Julio from Colombia. Assigned to our parish for a short period of time as the priest for the Spanish Mass, he prayed Noelle through her brain surgery at Stanford University Hospital -- an interesting phenomenon since she understands Spanish poorly and he did not understand much English at the time, but prayer is not something that needs translation. Donnie and I built his website when he began an organization to help the children of Colombia with education, clothing, and work opportunities. Then, the bishop assigned him to the English Masses in a nearby city with little warning, a tough assignment because of the language. For the ten months he celebrated English Masses prior to returning to Colombia for the past year, Padre Julio spent 8-10 hours a week at my house, learning English in the evenings. I worked with him on the kinds of vocabulary, grammar, phraseology, and text organization that he needed for his homilies and on pronunciation for the gospel reading and liturgy. In the beginning, I helped him put his homilies into English(I do understand Spanish though I speak it not thrillingly well); later, he would write the homilies himself and email them to me for correction; toward the end of his study he did not need my help in this way and we simply moved forward in improving his overall English, talking about all kinds of daily and spiritual topics. As much as he thought I was a blessing to him, he was more a blessing to me. Padre seemed like a younger brother -- even more so after his mother came from Colombia for a long visit. I called her Mama, and, a mother of seven boys, three of whom became priests, she told people that I was the daughter she never had. After Mama and he returned to Colombia, Padre occasionally Skyped me, especially when he was at home with Mama. She pushed the limits of my Spanish, but one does not need linguistic erudition for familial bonding and love. Padre came back to the USA a few months ago and was assigned to the San Diego diocese, to a parish near Tijuana on the Mexican border. In the phone conversation tonight, Padre asked Donnie and me to come to San Diego to visit him; he misses us. Yes, he knows how far it is from us: more than eight hours since we need to go all the way to the border. One just does not think about those kinds of things with family, though. Family always comes. Family is always "there" when you need them. Of course, we will go visit Padre. I am his big sister. We are family.

Oh, by the way, the reason Desiree needs help is that the building manager will not let her stay with Noelle because she does not qualify to live there -- it is a building for the handicapped, to which Noelle moved when Ray was long-term hospitalized in 2006, having fallen into a coma that lasted nearly nine months. She needed something smaller, more affordable, and more accessible to a wheelchair since she was living alone. Desiree moved in a few months after Ray died. Of course, we will help her. She is now, after all, also family.

Reflecting upon matters, Lizzie's tongue-in-cheek comment about being an orphanage, not a family, is inaccurate. I am certain that in a serious moment she would agree that we are not an orphanage. We are definitely a family.

Dr. Underwood

As promised, here is another excerpt from Raising God's Rainbow Makers, my next book, which is currently in progress. Comments welcomed and adored! I prefer to get comments, especially negative ones, before publication. After publication is a bit late!

Dr. Underwood and I had met under difficult circumstances when we were living in Washington, D. C. during my stint of duty at the U. S. Department of State. I had made a Monday appointment at Georgetown University Hospital to which Donnie and I had decided to transfer Noelle’s care. On Saturday, in the middle of the night, while the records were in transit and her care in the process of being moved from one hospital to another, Noelle’s shunt malfunctioned. There was no question where to take her. Georgetown University was five minutes from our house; the other hospital was a 45-minute drive.

The young neurosurgeon on duty that night at Georgetown University Hospital went through the normal procedures to determine that the vomiting and pain was from the shunt and not from a stomach problem. “Tell me how many fingers you see,” he directed 11-year-old Noelle.

“Forget about your fingers,” said Noelle wanly. “I can’t breathe. Do something about that!” With those words, she stopped breathing.

The emergency room was suddenly alive with doctors and nurses, carts and paddles. We were quickly ushered to a waiting room. We would have preferred to stay in the emergency room, but these doctors and nurses did not know us and did not realize that we would not have been in the way and might even have been able to help. Realizing that arguing was going to waste precious time, we complied with the request to wait in the waiting room for the results of medical intervention.

Fortunately, we did not have to wait long. The paddles got Noelle breathing again. The resident informed us that he had called the doctor who would be the attending physician, Dr. Underwood, at this happy hour of 2:00 in the morning and got him out of bed. He would be in soon to install a new shunt portion.

Within just a few minutes, indeed, Dr. Underwood showed up. He told us that Noelle was in acute hydrocephalus (she had not become shunt-independent as many hydrocephalic children ultimately do) and that he would need to operate to repair the shunt. Since no records were available, he asked me to recite as much of Noelle’s medical records as I could remember. As it turned out, it would take three surgeries, each two weeks apart, to get Noelle’s hydrocephalus under control again. He replaced the brain portion of the shunt first, leaving the older tubing in the peritoneum since it was functioning fine. Then he had to replace the valve because I had forgotten to mention that she could not tolerate medium pressure, the default valve type used in cases where records are not available. Finally, it turned out that the peritoneal end of the shunt was not really functioning fine; it had become trapped in the peritoneal tissue and so the third revision in six weeks was undertaken.

Dr. Underwood and I came to know each other well during these weeks. In making rounds after the third revision, Dr. Underwood hesitated as he was leaving Noelle’s room, turned to me, and flabbergasted me with his words, “You know, when I put in the new valve, I looked at the lower portion of the shunt and decided not to replace it since it was working. I could kick myself now for not taking care of it all at the same time.”

How did he dare say that to a parent in these days of rampant lawsuits, I wondered. And especially to me! Did he know that I was the scourge of many clinics and hospitals because I questioned everything the doctors and hospitals did and made them re-think or took my children to different doctors when I thought they were wrong? Did he know that I was an outspoken advocate for my children? Was he not afraid of my reaction upon hearing these words of fallibility? Or did he know that I had great respect for honesty and integrity? Did he understand, intuitively, that I could handle any truth; it was the partial truths and manipulations that caused me to take out my lance and pierce one doctor after another?

Copyright 2010

RGRM: Why Noelle?

As promised, here is another excerpt from Raising God's Rainbow Makers, my next book, which is currently in progress. Comments welcomed and adored! I prefer to get comments, especially negative ones, before publication. After publication is a bit late!

Although Noelle was our second child, she was chronologically the first child to introduce us to the world of exceptional children, a world in which we would live forever thereafter. Lizzie would do that in a different way a couple of years later, but at the time that Noelle was born, we did not know that Lizzie was gifted; all we knew was that her stages of growth did not match the baby manuals, so we threw them all away about the time she was a year old. Therefore, when Noelle arrived, we did not even try to find a manual for her, but we did read everything we could find about spina bifida and later, hydrocephalus, and after that epilepsy. In between we learned about lesser concerns: a neurogenic bladder, lack of bowel control, colostomy care, range of motion exercises, breastfeeding a special needs baby, and on and on — a number of things which I have fortunately forgotten and another number of things that are too numerous and relatively minor to include here.

When you have a child with a life-threatening birth defect, you can feel very alone. This is especially the case when grandparents do not step up to the bat. Both sets of our parents were shocked by Noelle’s birth and immediately began professing that “their” side was not to blame. Our parents’ finger-pointing at each other, rather than their jumping in to help us, isolated us even more in the days of Noelle’s early surgeries. We, in contrast, blamed no one. We did not blame either set of parents; the appearance of spina bifida is a matter of both parents having some genetic weakness. We did not blame the obstetrical doctors for not warning us: at that time in history, there was no way they could have known. We did not blame ourselves: we had done everything we could to ensure a healthy pregnancy. We did not blame God: we did not know God existed. So, there was no need to ask “Why us?” “Why not us?” would have been an equally good question. Gene selection is a matter of chance; every biology student knows that. The need for our parents to place blame, however, tore away from us a potential source of support.

We did have solace and help, fortunately. They came serendipitously to us in the form of friends. As in childhood, in adulthood I gathered friends around me. I may have been an atheist in mind, but in heart I was surrounded by God’s influence through friends, many of them believers and most, if not all, of them bringing me comfort and giving me the opportunity and pleasure of helping them. As someone (wish I knew who it was) once said, friends are God’s way of taking care of people on this earth.

Some friends helped out with action. The hospital where Noelle was born could not handle her medical problems and so airlifted her from San Angelo, Texas, where she had been born 250 miles south to Wilford Hall Medical Center at Lackland Air Force Base in San Antonio. I signed myself out of the hospital that same day over the medical staff’s objections, and Charles and I headed south. It turned out that Noelle would need multiple surgeries and we would need to spend several weeks in San Antonio. I called friends at Ravalli Federal Credit Union in Hamilton, Montana, where we had our savings account, and the treasurer not only made out the check the same day but drove it 50 miles north to the Missoula post office so that it would go out by air immediately, rather then wending its way by ground to Missoula and then on out.

Other friends provided emotional support. When many people did not know what to say upon hearing of Noelle’s birth defects and met the birth announcement with silence, David and Diane Edgerly (Dave-Bear and Di, as they were known to Lizzie, our oldest daughter, whom they had frequently babysat) responded differently. NCOs in the U. S. Army (yes, I was a sergeant in the U. S. Army when Noelle was born and, while she slept in a baby chair beside me, was promoted to officer ranks, the only person ever in the Army with the dubious distinction of having stood a direct commissioning board in maternity clothes), Dave-Bear and Di had recently been transferred to Germany, but as soon as they received the birth announcement, which included the information about Noelle’s condition, they wrote a very simple note that gave us great heart and a very warm feeling, the first in a long time: “Welcome, Noelle; Dave Bear and Di love you, too.”

So many people helped then and later. All along the way we have had the support of friends, and so have our children as they have grown. Amazingly, these friends have been grateful for the opportunity to help. Even strangers have helped on many occasions and have clearly felt pleasure from doing so. Sometimes they even were rewarded in other ways.

Nadezhda Long recently described to me the impact on her children, whom, when they were young, Noelle babysat. When Liza and Sasha, Nadezhda’s children, were in grades 3 and 5, Nadezhda bought them velvet dresses for Christmas. After watching a Christmas play that focused on humanitarian values, Liza and Sasha begged Nadezhda to let them take back the dresses and use the money to take Noelle shopping. Ironically (or was it ironic?), after Christmas, the dresses were still at the store and on sale for half price so that Nadezhda's girls ended up with the dresses after all.

Accepting help was never my forté. I was a product of New England, and New Englanders, in Ralph Waldo Emerson’s words, are “rugged individuals.” Along the way, though, I learned to accept help, not only because I needed it but also because people truly liked to give it. It seemed that Noelle and Doah, both of whom exuded an irrepressible faith in God in spite of being parented by an atheist (me) and an agnostic (Donnie), brought out the best in people. Now, post-conversion, I understand a little better why: we were God’s gift to other people. We presented them with the opportunity to experience the pleasure of helping others: us.

copyright 2010

RGRM: Noelle

As promised, here are the first couple of pages from the book I am currently writing, Raising God's Rainbow Makers. I would love to have your feedback on this book as it develops.

Heralding Noelle

Angel (A): Lord, you could prevent this. Why do you allow it?

God (G): And what do you perceive as wrong here?

A: Well, you see, this baby will not be able to walk, not as a toddler and not as an adult. Epilepsy will interfere with her ability to drive as an adult. Hydrocephalus – all that extra fluid in the brain – is going to bring her the need to check periodically that her mechanical device for removing it is working, and when it doesn’t, there will be moments of panic and stress as her brain is compressed and she is in danger of dying. Not once, Lord, but I can see that there will be a dozen times that the mechanical device will have to be repaired. Human doctors cannot do with the human body what You can. Their mechanical devices are like fingers in a dam. Would it not be better if this baby were every bit as physically able as the people who surround her?

G: No. The gene pool is what it is. I will not intervene. Besides, she will be one of my rainbow makers, my special sprinklers.

A: Spinklers, Lord?

G: Yes. Some people call these kinds of sprinklers broken. Sometimes they call them defective. They are, however, neither. They are simply differently configured, and because of that, they spurt water, they gush water, they spray water wider and farther. Noelle will splash water on all around her. She will water humanity.

A: I don’t understand.

G: Think about watering a field. You need to have rows of sprinklers. Each splashes water onto a given section of land. However, every once in a while, one of them is broken. More water rushes out, and more land is watered. That is a special sprinkler.

A: Ah, I see, but I still don’t understand how they water humanity.

G: Others are drawn to protect and help them, and then they feel good about showing mercy. My sprinklers bring out the best in others. That’s what I mean by watering humanity. Watch Noelle. You will see this.

A. Okay, but what does that have to do with rainbows?

G. Absolutely everything. Have you not seen how in the water splashing out from a long row of field sprinklers you can see rainbow after rainbow? That’s what this little sprinkler, one that others might consider broken, will do.

A: But what about her family, Lord? Her sister, Lizzie, and her parents?

G: Oh, I am happy that Noelle will be born into this family. It does not always happen that my special sprinklers are adequately tended, but these parents are fighters. They will protect my little sprinkler and make sure no additional harm comes to her beyond what she born with. They will make sure that she can refract light through her water droplets to cause rainbows.

A: How, Lord? They don’t have the expertise.

G: They will find it. When they can’t find it, I will lead them to it.

A: But, Lord, there will be so much to find, and there will be so many crises. How will they handle all this?

G: I will be with them. In the good times and in the bad. In the triumphs and in the crises.

A: But they don’t believe in You!

G: Oh, I can handle that, too.

copyright 2010

Noelle Waits and Watches

(Sorry, no photo -- will add later, when Blogger is more willing to upload an image!)

The latest is that the likelihood of one or both of Noelle's legs being amputated has just escalated from the realm of possibility to that of probability. This is an issue she has wrestled with ever since she left braces behind in her mid-twenties and began using a wheelchair full-time. Not bearing weight on her legs has weakened them considerably and contributed to seriously poor circulation. For the last two years, her legs have been constantly infected, and she has been on a pump to remove the infection for weeks, sometimes months, at a time. Moreover, she has to clean and wrap her legs everyday.

A couple of months ago we had a real scare when the infection got into the bone. She slid by without an amputation that had been threatened by her orthopedic surgeon when I knew guy, trained at Stanford University, showed up on the day of her surgery at the local hospital and had some ideas about how to avoid amputation. Somehow, too, the infection had abated back out of the bone, making the condition less worrisome.

Perhaps that scare and abatement was simply a way to prepare us all for the inevitable -- or may it is not inevitable. That we will only find out in hindsight. At this point, though, it appears that amputation is in the offing.

Now, one has to realize that Noelle does not think about her legs like you and I think about ours. She has never felt them. They have always been limp. (She is paralyzed from the chest down.) So, for her they have been more of a nuisance, once she left behind braces (in braces, they legs were what allowed her to be upright), having to be moved by hand and often prohibiting or at least impeding movement from one position to another. She does not feel her legs, so if she is not looking at them, she is unaware that she has them.

People will sometimes ask her if it bothers her that she cannot walk. Her standard reply is, "Does it bother you that you cannot fly?" Her point is that people cannot "miss" flying because they have never experienced it. Likewise, she cannot miss walking because she has never experienced it.

Years ago when she first started using the wheelchair and was unaware of its complications and dangers, she tore of most of one toe when it became caught in the spokes of one of the wheels. The doctors had to amputate it. I was in the room with Noelle when the doctor popped in post-surgery. Concerned about Noelle's potential negative emotional reaction to the surgery, the doctor asked her kindly, "Are you missing your toe?"

Now, the word miss has more than one meaning, and Noelle understand the question quite differently from how the doctor meant it. "Yep," she replied brightly, "it's all gone."

The doctor seemed shocked. I don't think she had much experience with people who have been paraplegic from birth. "She cannot 'miss' her toe in the sense that you are asking," I explained to her, "because she never was aware of its presence."

And now we have the same issue with her legs. I am not sure anyone in the family was ready to accept amputation earlier -- and prayed that we would not have to (prayer answered) -- perhaps because of personifying it for ourselves and perhaps because of some idea that having legs, even ones that are non-functional, is more aesthetically pleasing than not having legs. However, in reality, the legs are misshapen and infected and not aesthetically pleasing at all. It is stereotypes, not reality, with which we have been living. Now reality has knocked at the door and said, "Folks, you have a choice. Legs or life." Put that way, there is no choice.

We have all gone through this kind of crisis before. Shura, as a teenager, much younger than Noelle, who now has three decades of experience against which to gauge her response, had the same choice: to die with his gangrenous legs or to live without them. He chose life. So will Noelle.

Road Trip: The End

Early last Monday morning, awakening not too late considering the pizza birthday party the evening before, we all tumbled out of bed, prepared to ready ourselves to hit the road. While Donnie took Lizzie to the airport so that she could head back to South Carolina, Doah, Noelle, and I packed up and checked out of the hotel. There we were in the lobby, suitcases all lined up and ready for stuffing into the van when he returned.

Since there were no real deadlines to meet on the return other than for me to be at work on Thursday morning, we moved fairly easily and comfortably from state to state -- and we did go through a lot of them, Oklahoma being one of them. We had decided for reasons of finance and time not to stop overnight but for Donnie and me to take turns driving, stopping only to gas up and eat -- and perhaps an occasional sight. As a result, we had a number of "roadside meals," with some of our seating arrangements giving literal meaning to that expression.

All was fine until we reached the Mohave Desert. We stopped briefly for lunch. As we enjoyed our meal, we looked across the way at two workers. What were they doing? They were mowing that desert! Donnie said that gives literal meaning to purgatory!

It was then that the phone rang. It was my boss, asking where I was. "In the Mohave Desert." Where else would I be?

"I need you on a plane tonight to Washington. You have a meeting there tomorrow."

Oh, really? Donnie allowed as to how we could "hurry home" if my boss was willing to pay the speeding fines. However, we were able to work out a slightly different plan, one that had Donnie dropping me at home first, then taking Noelle and Doah to their homes.

All's well that ends well, as the story line goes. I made it back just in time to catch a redeye plane to Washington. (It helped that I did not have to pass since I would catch a return redeye the next day.) The kids got distributed. The van got returned on time. And Donnie got some sleep -- the next day. Ah, life continues as usual...

Road Trip: Arrival & Events

We reached our destination on Friday, just in time to reach Sue, Doah's former teacher who had taken him into her home in 1998 while I was working at NASA, before she headed out for a party. At the party were two of her former assistants, both of whom also knew Doah. They were very excited to see him after more than a decade had passed. He was excited to see them. I took him to the party, and as I was preparing to join them, he turned to me pointedly and said, "Bye, Mom."

"I'm going to go with you, sweetheart," I told him.

"No, you're going to the hotel," he replied. I understood that these three ladies were very special to him, so special that he did not want to share them with anyone, let alone with his mother.

"I'll bring him back," Sue offered. I accepted.

Donnie and I went to dinner at Bob Evans while Doah was partying. Bob Evans was next door to the hotel, and we were still there when Sue brought Doah back. I called her on her cell and suggested she come by Bob Evans. She also had her 12-year-old son with her. So, we had dessert together and caught up on the last ten years.

Unfortunately, while I took pictures, I managed either to misfile them or overwrite them. I have no pictures either of our time at Bob Evans or at Pizza Hut (birthday party) on Sunday, yet I took many. Sigh! It's technology; I have a high chance of messing it up. Sigh!

Saturday brought the wedding, unusually themed as a reflection of the 1920s. Most people got into the spirit and dressed accordingly. A few things threatened by the wedding, but for an event that was five years in the making, nothing was going to stop the train from arriving at its station. First, it rained. Hard. Cats and dogs. Thunder and lightning. The power went out for four hours, which made it difficult for the bride and bridesmaids to get addresses and do their hair appropriately. Second, the rain continued for hours; the grass was still wet at 6:00, the time of the outdoor wedding. Fortunately, Jake and Jessica had an alternative indoor plan, and all was well that ended well.

As the reception wound down, the wedding party left to visit the grave of JT, a friend of theirs who was supposed to have been the best man, but who was murdered. It's a long story, and the murderer is in jail, but JT's absence added a small somber note to an otherwise joyful gathering. (JT must have been a special person because for the past year, his friends visit his grave regularly, and for twenty-somethings to do that in this day and age is remarkable.)

Sunday was also a special day. Noelle's birthday was May 30, Sue's May 31, and Rollie's June 26. Three of my nephews were also born in June. So, we did a joint celebration. We called my sister, Danielle, a June 6 birthday girl, to say happy birthday. And cousin Shelly, Lizzie's twin cousin (born on the same day in September) drove in from Columbus to join us in our pizza party. In all, we filled up 22 chairs at Pizza Hut, a real Mahlou outing, albeit with only a few from the 12 branches represented.

Then, we retired to the hotel because Donnie had to drop Lizzie off at the airport early Monday morning before we all headed back home. However, before she fell asleep Noelle had Donnie set up the laptop that the family had pitched in to buy her for her birthday and had gotten onto the Internet and friended everyone in the family. It has been the first sign of her continuing with life in a new direction since Ray died in January. Yes!

And then we all went to bed and fell asleep...