Aileen

1976

Cayes, Haiti

In 1975 we moved to Cayes, Haiti. Located about 100 km from Port-au-Prince, but even more then the distance the isolation was extra-ordinary. It took 12 hours to drive a pick-up truck to Port-au-Prince, and by that information you can understand that the road was not paved, though mountains, along beaches and rivers. The only other foreigners in the region were Catholic priests, and they were never seen. This is Aileen’s first home.
1976

First Belgium Baha’i

The visit of Madame Lea Nys (1910-1992) to our home in Les Cayes. This “valiant handmaiden of Baha’u’llah” was born Lea Maria Decelle on December 27,1910, in Brussels, Belgium. Lea was attracted to the spirit of sacrifice of pioneers, their simplicity, their availability, their hospitality, in spite of the little means they had. Their ideal was hers. We were very happy to meet her.

She was “the first to accept the Message of Baha’u’llah on the soil of Belgium.” Baha’i literature in French was lacking. Lea dedicated much of her energy to the translation of the Sacred Texts, such as prayers, into French.  She visited more than sixty francophone islands scattered across the globe. Everywhere that she went, she would radiate a natural ease in meeting with the poorest and the richest and in proclaiming the Faith through the media. She would leave behind many people who would declare their Faith in Baha’u’Ilah. Nothing would stop her, neither fear, nor precarious situations in remote villages. She was happy with simple comforts and would share life with the most humble of people, and she was equally at home in more sophisticated environments. 

1976

Newborn

Soon after she was born in Port-au-Prince, we were back in Les Cayes. We had a large house. Our saviour and housekeeper was Cleant, who was wonderful. We knew nothing so she bought food in the market and cooked for us. Upon arrival we did not speak a lot of Creole, and besides taking care of work, and Aileen, we played a lot of double solitaire. This was the age of: no mobile phone, land line mostly down, no videos or DVDs, only one local radio station, and only a few English speakers in town. We were the only foreigners, except for Catholic priests, who we never saw. It was me and Carolyn, local Bahá’ís, and occasional visitors such as my mom and Ralph.

1977

Around LesCayes

Ferme de Levy, where I planted maize trials with CIMMYT.

The road to Port au Prince, and the airport (dirt runway).

Bahá’í communities.

Crossing the river.

1977

1 in 4

xxxxx

1977

Enoch Olinga

Towards the end of our stay in Haiti, Hand of the Cause Enoch Olinga visited Haiti. I even think he visited us in Les Cayes, but I can’t remember that clearly. What I do remembering clearly is that I had a job offer in Cote d’Ivoire, and a choice. Either I remain in Haiti or move to Abidjan. I asked Mr. Olinga what I should do, and he said: “Go to Africa.” In this picture Aileen is in his arms. Many of our dearest friends are here, including Mrs. Olinga, Nabil Hanna, the young Bahá’í that worked for me, Linda Gershuny, and our Haitian family. Olinga was described as “sunshine bursting through the clouds.” Despite the tests that Olinga faced throughout his life, he was known to often greet others with the words, “Are you happy?” Ruhiyyih Khanum recounted one of his most endearing qualities was his “great joyous, consuming and contagious laugh.” Such was the bounty of meeting him and his wife.

1978

Abidjan

So, after the hospital and diagnosis with glycogen storage disease GSD, we moved to West Africa. I worked for a regional African organisation: “Le Conseil de l’Entente.” Five countries joined together for collaborative development: Ivory Coast, Haute Volta (now Burkina Faso), Togo, Benin, and Niger. I travelled for two years from country to country, a project manager for rural development projects. We had a wonderful life in Abidjan, a very close connection to the Bahá’í community, many friends, many house guests. But this time line is for Aileen. Perhaps it was not very smart to keep pioneering after Aileen’s diagnosis for GSD, but I was happy and confident and believed that we lived in the protection of God. I still think that way, as people commonly say, you never know what our end will be and how.

1979

Community Life

When we moved to Abidjan, we had to establish delivery of special formulas for Aileen from the United States. They were expensive and hard to get in Abidjan, requiring customs clearance. Every night we inserted a nasal-gastric tube to deliver this formula and to assure Aileen’s development. We heard that the period up to puberty was the most difficult time for GSD, and that after puberty things became easier. Aileen’s brother appeared after one year, and the family was busy and active. We lived in in a wonderful and close-knit community. Thirty-five years later I visited Abidjan for work, and many of our friends were still there. In one picture you see Mary Tartaglia, who Mauro met on pilgrimage. Before leaving, he told us that he planned to meet his wife on pilgrimage. We wished him good luck– but he didn’t need it. Mary stayed with us before the marriage and helped with Aileen. Ranzie Mensah and Jean-Christophe Casu were also close, and often stayed with us. One day I met Ranzie on the steps leading up to the Shrine of the Bab. She cries out: “Gary???” Svitlana looks at us, and can’t understand what is happening. I have told her often that I have other lives and she needs to met all the parts.

1979

Hearing Impaired

After about a year in Abidjan, we starting noticing that Aileen didn’t always react to people or noise. In the beginning, we could’t quite understand what was happening, because deaf people compensate with other senses, and their behaviour at times will look as if they can hear, even when they can’t. I keep watching and observing, because there was something, but I couldn’t define it. One day, returning home from work, I drove the car close to her and honked the horn. No reaction. First we asked a Bahá’í friend, a doctor, and then we decided it was time to get it check out. There were no adequate facilities in Abidjan, so back again to the US for tests. Aileen is profoundly deaf. We don’t know why it happened, if it is related to GSD or not. In the graphic, you can see that profoundly deaf means she doesn’t begin to hear sounds until they are over 100 decibels, and even above 120 decibels she doesn’t hear some sounds. If you click and open the graphic, you can see that Aileen has hearing above 100 decibels at low frequencies only. High frequencies are off the scale. Ordinary conversation is around 65 decibels. A rock concern is above 110 decibels. We were faced with a second serious difficulty in Aileen’s life, and few resources in Abidjan to help us. I had to recognise that there was no other choice but to return to the United States. I had no desire to return. I loved my work, and serving in Africa. But I could not ignore Aileen’s needs. Carolyn and I understood that caring for her was not going to be easy.

1980

Starkville, Mississippi

I was hired as a Research Associate, a junior level faculty position, at Mississippi State University in Starkville, Mississippi. I bought my first farm in Mississippi and designed and built my first house. The job included consulting in West Africa, and matriculation for a PhD. We arrived in Starkville the fall of 1979.  I was able to combine my work as a “research associate” with my dissertation research. The disappointment resulting from leaving the pioneer field in Africa was quickly forgotten by a new life, and the open doors that guided me to this position.

Aileen arrived in Starkville not knowing her name and with no verbal skills, neither receptive nor expressive. Aileen was a little over 3 years old when we arrived in Starkville. Her hearing impairment was at the top of the scale (there is no hearing impairment beyond “profoundly deaf”, her measured hearing). One of the measures of her success is that she discounts these facts and minimises her hearing loss. She cannot comprehend the point from where she started, and I think part of this is related to the world she lived in during the first 3 years of her life before we began auditory training.

God gave us the instruments and means to provide loving, competent and state-of-the-art support to Aileen. The Education for All Handicapped Children Act (Public Law 94-142) was enacted by the United States Congress in 1975. When we arrived in Mississippi, the school system didn’t have any idea what this meant and what they needed to do. We were involved in negotiations about the services they would provide under this law. Suffice it to say, the school system was worried about how much this would cost. This act required all public schools accepting federal funds to provide equal access to education and one free meal a day for children with physical and mental disabilities. Public schools were required to evaluate handicapped children and create an educational plan with parent input that would emulate as closely as possible the educational experience of non-disabled students. Before Congress enacted Public Law 94-142 schools were not required to educate children with disabilities whatsoever. Some states even had laws that allowed them to deny access to education of children with disabilities (probably including Mississippi). Interestingly, one of Hillary Clinton’s first jobs was to work for the Children’s Defense Fund, which fought for this act.

 

1981

Mississippi State College for Women

We found a program for Aileen at the Speech and Hearing Clinic at Mississippi State College for Women in Columbus, Mississippi. This old, well established, and thoroughly Mississippian women’s school in the old south tradition was able to give her personalized attention by highly motivated teachers and staff. And, fortuitously, it has received a grant from the federal government and a new law had been passed requiring schools to accept hearing impaired children into local schools (mainstreaming). When we considered the options to move to North Carolina, the grant that was instrumental in helping Aileen was exhausted, and would not be renewed.

Over and over in my life, whenever confronted with difficulties or crisis, I found that if I kept moving and looking for a solution to whatever the difficulty entailed an answer appeared. Of course I don’t think that 94-142 and the federal grant were cosmically guided resources that God sent me to help my daughter, born to Baha’i pioneers in Haiti. But at the same time that is what happened, and I can cite other instances of this kind of unexpected support and guidance that directly impacted on my life. I don’t believe this only relates to me.

One evening at a Baha’i fireside in Kyiv, we read and studied a prayer about God’s support, tests and difficulties. I asked everyone in the room to think about the most difficult time in their life. A time when they did not have hope and felt helpless and unable to resolve a difficulty. And then I asked them what happened; how they survived the crisis.

Everybody had a story. Everybody has difficulties. And everyone receives support that was unanticipated and unexpected. For me, this is practically the definition of a spiritual test. We are confronted with issues that are by definition overwhelmingly difficult and where we do not have ready answers or solutions. Baha’is teach that these crises are part and parcel of life in the physical plain. I taught a class to pre-youth, when Svitlana’s father died, and I talked about the fact of disease, death and dying. I asked them: “Did God create anything that is bad?” They indicated: “No.”  Then, I went on: “So that means that the physical world animated and sustained by God, which includes death, needs to be understood from this perspective?” So we discussed that death is part of life. It is difficult and a test, but what we call death is simply a transition. And death and free choice is part of the underlying purpose of Creation– to give us a physical classroom to refine and develop our souls. One of my favorite multimedia videos (in Russian) is based on the book “Purpose of the Physical World”, by John Hatcher.

Aileen was a huge test for her parents and we responded in unity, and love. We worked hard for Aileen and found doors to provide her with her needs.

1982

Learning English

I was adamant that Aileen should learn English, have a high level of proficiency, and have the skills to function in an oral environment. My thought processes are always rather simple. She needs to read the Word of God, to achieve her purpose in living. I believed that deafness is no handicap from a spiritual viewpoint, especially if the deaf child has high skills in reading and writing, and english proficiency. This belief was fostered and developed at the program at the Mississippi State College for Women.

The College for Women has an oral communication proficiency policy. In the University’s prospectus, it sums up the pivot of our work with Aileen in Mississippi. It states: “Speech-language pathologists working with individuals who have communication disorders must demonstrate excellent oral communication skills. Speech-language pathology students are expected to model all aspects of Standard American English including phonology, morphology, syntax, semantics, pragmatics, and suprasegmental aspects of speech. Additionally, students must speak in a clearly intelligible manner during spontaneous conversation, and produce all consonant and vowel phonemes of English accurately, at the sentence level, prior to beginning the clinical practicum experience.”

So, that was our new world after Africa: phonology, morphology, syntax, semantics, pragmatics, suprasegmental aspects of speech, producing all consonant and vowel phonemes of English accurately, at the sentence level.

As I watch the life story of Hillary Clinton at the Democratic Convention of 2016, her activism to get this law passed was highlighted. In reality. this law gave Aileen the possibility for the best support and educational programs throughout her school years in Mississippi and North Carolina.

We were so lucky to have the program at this Women’s University. I have tried to find some of the teachers involved, but so far, I haven’t received a response. Without their help, Aileen would not have achieved all she achieved.

I don’t have enough pictures of Aileen during this period, but her pictures show her concentration and the energy she used to learn. Although one can say that professional help, schools, and her parents contributed greatly to her ultimate success, without the Aileen’s determination and hard work, it would not have happened.

Some of the pictures are about auditory training. Small groups, technology, dedicated teachers with special training….all part of the program and needed.

    1983

    Cary, North Carolina

    The unexpected and rapid move from Starkville to Cary, North Carolina was made with 2 children. We initially rented a home, and then a condo near the center of Cary, and went about the work of setting up for Aileen her deaf support services and medical backstopping at Duke University. We arrived in time for the start of school in September 1982. Aileen was 6 years old, Nabil 4.

    When we arrived in North Carolina Aileen’s auditory training was well underway, and we had understood the path to go forward. Negotiations were undertaken with the school system and Aileen was mainstreamed. On the other hand, her GSD was not under control. We started a program at the Duke University Medical School, under the direction of a Chinese doctor, Y. T. Chen. Two years later Dr. Chen published “Cornstarch therapy in type I glycogen-storage disease,” based on the work involving Aileen as a patient. I call this work the first GSD miracle. It changed our lives for the better. Who would have guessed that due to this research, not only was the condition regulated more effectively, not only did the seizures begin to diminish and eventually to cease, but it was the simplest of procedures. It required no expensive medical “food” that was expensive and, when in Africa and Mississippi, we had to organize its purchase and shipment to our home. It required eventually no N-G tube and infusion pump every night. And we didn’t have to monitor Aileen and watch her eat the required amount of food at the required time.

    With GSD issues, I was always the bad guy in Aileen’s eyes. It is not in Carolyn’s nature to be openly tough with the children, but she was well aware of the consequences if the schedule was not followed— both immediate and long term. In our marriage Carolyn was never able to say “no”, to me and to her children. This was imprinted on the soul of Aileen and she resented the fact that she had to acquiesce to her “father’s regime” and that she could seek refuge with her mother. This resentment was nurtured by the divorce, and turned into a rebellion against me, and against the values of her parents that extended into her adult life.

    In 1984, uncooked cornstarch was found to be the most effective therapy for maintaining blood glucose concentrations in the desirable range. Research demonstrated that cornstarch therapy only prevents hypoglycemia for a median time of 4.25 h in children. Initially, all children must awaken in the middle of the night for therapy, and delayed administration of the therapy can be associated with the development of hypoglycemia, seizures, and neurologic injury. Even as adults, almost all patients still require therapy every 4-6 h, and overnight therapy is required in of patients to achieve optimal metabolic control.

    “The constant anxiety about avoiding hypoglycemia and the necessity to interrupt sleep to receive therapy 1 to 3 times per night is deeply detrimental for these patients and their families. The effort is exhausting, and the resulting fatigue affects the work and quality of life of the patients and their families. In addition, exhaustion from waking up every night eventually leads to delayed administration of a cornstarch dose, which puts children with GSD Ia at extreme risk from hypoglycemia.”

    A few years later, in 1987 Dr. Chen, published “Prolongation of normoglycemia in patients with type I glycogen storage disease,” again partially based on work with Aileen. We have much to thank for the inspiration of Dr. Chen. In this research, long-term effects of cornstarch therapy on biochemical values and physical growth in children with type I glycogen storage disease (GSD I) were compared to those of children receiving continuous nocturnal nasogastric glucose feedings (CNG). Blood glucose, lactate, cholesterol and triglyceride levels were not significantly different between the two methods of treatment. All patients maintained linear growth rates normal for their age. The data confirmed that cornstarch is a simple, effective and safe therapy for GSD I. Interestingly enough, by 2010 Duke was undertaking research, where “Gene Therapy Could Save Kids From a Lifetime of Eating Cornstarch.” If I met the author, I would remind him how wonderful this research affected the lives of the children, and parents.

    There is a post-script to this GSD discussion and Dr. Chen. When Lua was born, Dr. Chen diagnosed her with GSD Type-I, the same as Aileen. Another post-script, the miracle of corn starch opened the door to our return to the field of Baha’i pioneering.

    1985

    Kandy, Sri Lanka and BC, Canada

    We lived in a large house in Kandy, and Aileen and the others were first enrolled in a cooperative school organised by expatriates living in Kandy, then a year of home schooling, a year at the Digana School operated by an International Irrigation Management Institute, Colombo American School, and Maxwell Bahá’í School on Vancouver Island, Canada. From my point of view, such as experience was worth its weight in gold. In the middle of our time in Sri Lanka, the wonderful plan and activities turned into a divorce, unexpectedly and suddenly, and Aileen found herself in the middle.

    1986

    Grade School, High School

    There were two reasons for the move to North Carolina. I loved my “farm” in Starkville, and I was offered the job of Assistant Professor after completing my PhD. But after getting the offer from NC State, and understanding the advantages for Aileen for both her GSD and hearing impairment, once again I decided that she was more important  and the family needed to move. My life in North Carolina will be discussed elsewhere, this section is about Aileen.   In terms of her deafness, she was mainstreamed in the NC public school system, and later, after 5 years in Sri Lanka, the NC University system, which resulted in her being in the top perhaps 1% of the profoundly deaf in terms of her academic achievements and ability in both the hearing and deaf worlds. Unlike most profoundly deaf, she is effective in both the hearing and deaf worlds. The extent of this accomplishment cannot be overestimated. It results from Aileen’s strength of character, and the unity of her parents and their ability to give her everything she needed. In terms of her home life during the 4 years in North Carolina (82-86), the first years in Cary were difficult, with frequent hypoglycaemic episodes, some very serious. Then with the corn starch, and puberty, the severity diminished and became manageable. In 1986 we arrived at the point where, after leaving Abidjan 6 years earlier, we were ready to return to the pioneering field. That was the last time I was in the US and when Aileen returned to North Carolina, her parents were divorced. When we left for Sri Lanka, all seemed well.

    Aileen was born July 30, 1976. If we step back 9 months, she was conceived in the fall of 1975, soon after Carolyn and I arrived in Haiti. Haiti, extreme poverty, baby-doc Duvalier, no French (no Creole), no mobile phones, no videos– our new home.

    Besides a couple of Catholic priests, there were no other foreigners living in Les Cayes in 1975. Papa Doc’s son, Baby Doc, was president and stories of the atrocities of Papa Doc were still fresh in the mind of Hatians.

    How did I react upon arriving in Haiti? I adapted. I reached out and worked with my professional peers and the Baha’i community to meet all expectations, objectives, and hopes. In many ways, I found happiness and fulfillment and objectified the saying that, when one works selflessly for others he or she reaps the benefits in growth and happiness. The key is selflessness, and except for a desire to serve and be effective in my service, I was not, and never became over the next 40 years, professionally ambitious. “We fulfil our highest purpose in a life of service, in which we offer our time, energy, knowledge, and financial resources.”

    Upon arrival we started learning Haitian Creole. In about of year, we were fluent at a basic level, and could work and teach in Creole. By the end of our 2 year stay in Haiti, we had started learning French.

    In Les Cayes (where we lived) there was only one small early 20th century telephone switchboard (using wires to make connections on the switchboard to re-route the calls to the required destinations). The land line between Les Cayes and Port-au-Prince often broke, meaning no connection outside of the city system (which only had a few phones, so not much use really). There was no real road between Les Cayes and Port-au-Prince (120 km). It took 10 hours and we sustained numerous bumps on our head (because the car often dropped into deep ruts and bounced out, and our heads knocked against the car roof). You had to gather your courage before taking this road. I eventually bought a dirt bike for the trip.

    Starting in Haiti— springing forth from a spiritual birth a few years before, my personal deepening in the Faith, keenly observant of Baha’i examples of right living starting with ‘Abdu’l-Baha— I did my best to embody the words of Shoghi Effendi: “To be continually giving out for the good of our fellows undeterred by fear of poverty and reliant on the unfailing bounty of the Source of all wealth and all good–this is the secret of right living.”  I was never wed to any job, or place. I gave up tenure track positions 2 times during my life (Mississippi State, NC State) and Dutch permanent employment at ARCADIS Euroconsult to pursue a life of service, never for the salary, never for personal  glory.  After receiving my offer of employment in Haiti, I contacted the Baha’i National Office in Wilmette and asked them if this fulfilled one of the international pioneering goals of the Faith. Only after that confirmation, I agreed to go.

    Aileen’s pregnancy was easy. There were no ill signs and Carolyn was strong and positive. We consciously prayed for Aileen’s life and development, starting when she was still actively growing in the womb of her mother. Many foreign aid families were medically evacuated for deliveries, probably more a decision of their prejudices against local doctors and institutions rather than any medical necessity.  Carolyn and I decided to use Port-au-Prince facilities and doctors, given the isolation of Les Cayes. She stayed in Les Cayes until the 9th month, and then local missionaries flew her to Port-au-Prince where she stayed at the home of the Hannas to await the big moment. I was ready at any time to jump on my motorcycle and race the 120 km to be present at the birth. Unfortunately, it was the only birth of my children where I was not present. Not because of the distance, but because of the rules of the hospitals in Port-au-Prince— Canope Vert, to be precise.

    Without adequate metabolic treatment, Aileen could have died in infancy or childhood of overwhelming hypoglycemia and acidosis. Negative effects of inadequate treatment include stunted physical growth, delayed puberty– even mental retardation from recurrent, severe hypoglycemia. If not adequately treated serious hepatic complications including adenomas and even a small chance of later malignant transformation to hepatoma or hepatic carcinomas. Additional problems reported in adolescents and adults with gsd I have included hyperuricemic gout, pancreatitis, and chronic renal failure.

    When Aileen was diagnosed, I researched this topic extensively. If under control before serious harm occurs, including prompt reversal of acidotic episodes, and appropriate long-term treatment, I understood that Aileen could be healthy. Her adult health and life span would also be good. Interestingly, if the literature is studied, there is a lack of effective treatment before the mid-1970s and thus limited long-term information about GSD. Aileen, in fact, as we shall see, participated in early research that greatly improved her life and the life of others. Is this all a coincidence?

    Aileen’s care was a joint effort, provided by me and her mother. We agreed that I would work, giving Carolyn the time, opportunity and support during the day. Otherwise we shared her care. My background as a research scientist was applied to Aileen’s condition. In the attached graphs, it shows the dynamic of Aileen’s care. What the graphs shows is that over a few hours, the blood sugar drops and will, if not halted, result in a seizure.

    So, after eating, there was only a few hours before a hypoglycemic convulsion could start. If a convulsion, a IV drip with a glucose solution needed to be started as fast as possible. Carolyn and I were trained to do this, and we practiced on each other. Of course, if we could get a medical professional, we took that route first. And convulsions did occur, irregularly but periodically. Perhaps every month, and even more often, an IV was needed, either because a convulsion was imminent, or already happening.

    Here is where the reader needs to pause and reflect. For 10 years, that means all the time in Haiti, Africa, and Mississippi, Aileen’s GSD had to take the first priority— 24/7.  Every night, an NG tube would be inserted. A microphone was wired to be near her face, so during the night we could monitor her breathing. We had to sleep lightly, aware of her breathing, ready if needed to respond to a medical emergency. Various pieces of medical equipment was needed… bought, operated, maintained.  An IV set with glucose was always positioned nearby for quick access in an emergency. And…… as parents……. we knew what would happen if we couldn’t keep her condition under control.

    How much stress did this cause for Carolyn and me? How much did it affect our marriage? Carolyn and I did many things right. We acted with regards to Aileen in perfect unity. I think the children, ironically Aileen, don’t realize how successfully we united for Aileen’s care (and later for the other 2 children). But it did affect our marriage. The requirements for her disease definitely impacted on Aileen’s life, including her relationship with me. Aileen sees me as inflexible with regards to her, and her mother as weak. Both of these characterizations are nonsense.

    As soon as the full picture of GSD was understood, and we adapted to caring for a child with GSD, I started to notice that Aileen didn’t always react when spoken to.  I talked with Carolyn about it. Aileen was between 12 and 18 months. This starts a whole new story about identifying that she is profoundly deaf, and to her parents once again responding to this. We left Africa because of Aileen. No other reason. We needed professional help, and Abidjan didn’t have it. So I took a job at Mississippi State.

    When I finished my PhD at Mississippi State, and we had built our lovely rural home, I was offered a position of Associate Professor. But before the offer came, I was interviewed at NC State University in Raleigh. I really had no desire to move to Raleigh; I went because Mississippi State was taking too long to make up its mind about my future position. While in Raleigh, I checked with Duke University Hospital and the Wake County School System about possible services for Aileen.

    Aileen was going to a special, federal program as Mississippi Woman’s College, for her pre-school education during our time in Mississippi. It was a good program but it was losing funding. Compared to Mississippi, Raleigh was heaven in terms of the services that could be offered to Aileen.

    There was only one reason that we moved to Raleigh, and that was Aileen. Once again the family moved for Aileen. What was the result of the move, in terms of GSD? A minor miracle. She was accepted to get into a trial with a Chinese doctor investigating new ways to control GSD blood sugar. This resulted in research shown below that radically improved Aileen’s management. We had been informed that when she approached puberty we could expect a reduction in severity. But together with the corn starch, it reduced and gradually eliminated the frequency of her convulsions. I don’t think Aileen has any memory of these convulsions— that would be normal.  Even though over time the convulsions diminished, one of her worse convulsion happened in Cary when she was 10 y.o. and we gave her emergency treatment on the lawn in front of our house. A nightmare memory. Maybe I’ll write about it.

    In terms of her deafness, she was mainstreamed in the NC public school system, and later in the NC University system, which resulted in her being in the top perhaps 1% of the profoundly deaf in terms of her ability. Unlike most profoundly deaf, she is effective in both the hearing and deaf worlds. The extent of this accomplishment cannot be overestimated. It results from Aileen’s strength of character, and the unity of her parents and their ability to give her everything she needed. That is, until the divorce, which, not coincidentally, happened when she was becoming more independent and able to live a normal life without full time support. As long as Aileen was the priority, the marriage stayed together. But we did neglect the marriage, and the stress impacted us. How could it be otherwise?

    Aileen was diagnosed with glycogen storage disease, type 2, in Washington DC. Actually prior to that doctors in Haiti had already suggested this possibility, specifically the French doctor across the street in Cayes and a second doctor in Port-au-Prince. We continued to see periodically the hypoglycemic seizures of Aileen, responding always by feeding her, not really knowing the reason but recognizing the link between eating and the seizure. And, of course, we needed more information and so Carolyn and Aileen traveled to Northern Virginia where our parents still lived for tests. When the results were conveyed to me in Les Cayes, the French doctor’s preliminary diagnosis was confirmed. I met often with him to discuss the condition and what he knew about it.

    The treatment of the disease was rather straight forward. Frequent feeding; approximately every 3 hours. Because of the lack of an enzyme involved in the metabolism of glycogen (a complex sugar), Aileen’s blood sugar level was directly linked to eating and digestion. Ingested food process produces blood sugar directly for  a few hours, and then the body breaks down glycogen reserves to maintain  blood sugar after this initial period. So what to do during the night, when she wasn’t eating? She needed liquid food dripped during the night into her stomach via a NG (nasal-gastric) tube. The tube is inserted in the nose and goes down the back of her throat to her stomach.

    If we kept to a this schedule, then Aileen was seizure free. But what happens when something happens during the night, and the drip stops? Or when Aileen gets a virus, and doesn’t digest her food. Or, when Aileen doesn’t want to eat after 3 hours because she isn’t hungry?

    Most of the rest of my stories concerning Aileen’s early life I will scatter around the stories of Haiti, Ivory Coast, Mississippi, North Carolina and Sri Lanka. But there is one more important fact that seems to fit in here.

    Aileen’s genetic disorder was passed to her by me, and her mother. As can be seen in the diagram, there is a 1 in 4 chance of our children to have GSD. Aileen tested Carolyn and me to our limit. Baha’is believe that God does not test beyond the capacity of his creatures, but indeed this was a hard time for us. Baha’is also don’t generally practice sterilization, vasectomies, tubal ligation and the like. On the other hand, we were advised to think carefully about having another child with GSD. One child with GSD was a lot. Two…… maybe overwhelming. Then….. amazingly, Lua was conceived and diagnosed as having GSD. Overwhelming news. I could see the next 10 years with Lua, all the stuggles and difficulities. That was enough. So, when the coin was tossed, it was me chosen for the procedure. This would have implications after the divorce, because vasectomies are typically thought to be non-reversible. Or, perhaps better said, the odds of being successfully reversed are very low. That’s a story for my life in the Netherlands.

    Two interesting facts about this decision. One is that Marta was born; and second is that Lua was diagnosed with GSD, like Aileen, at birth. Both of these facts will be turned into interesting stories, sooner or later.

    The issue of Aileen during the lead up to the divorce, and after the divorce, will be difficult to write about. Why? Because I know Aileen will be angry about anything that I write.

    Well, I’ve never been stopped by someone who didn’t like my ideas or initiative. For 45 years I’ve been a consultant. By definition, there are many people who don’t like consultants. Why? Consultants are bought in to solve problems that the local staff either do not have the skills and training to resolve, or for some reason they lack some capacity to solve the problem. That doesn’t make us very popular. There are usually some who really appreciate the services of a competent consultant, and there are others who dislike the way we look, talk, and act.

    I suppose that I have to say, that in my relationship with my children, all of them, I believe we are bound by certain rules, and laws— laws that both in the physical sense, and laws that operate in a parallel spiritual realm. Baha’is teach that “”the material and spiritual worlds are closely interlinked,”and “All things are interconnected and flourish according to the law of reciprocity.”

    “…..cooperation, mutual aid, and reciprocity are essential characteristics in the unified body of the world of being, inasmuch as all created things are closely related together and each is influenced by the other or deriveth benefit there from, either directly or indirectly.”

    In the case of fatherhood, in the physical realm I supplied genetics, training, love, and resources. From the point of view of contemporary American culture, genetics is discounted, training becomes the sole domain of the mother, love becomes abstract, and resources are given until the child reaches maturity. From the point of view of the spiritual realm, the eternal reality, genetics generate a new soul, a spiritual entity. This happens at conception. That soul is connected to the genetic father and mother forever. Thus, genetics is very important (because of the creation of the soul), training by both parents is mandatory (you don’t get out of this role if there is a divorce), love is not bound by time or space, and the use of resources a matter for family consultation and unity.

    One cannot ignore the interconnectedness of the spiritual and the physical, and say: “Well, I’m going to decide to be on the side of my mother” and discount the fact that the relationship between the parents is not part of the terms of reference for pre-teens. Such behavior is not resonant with the energies in our lives, and will cause a person to “swim upstream” on issues. This is Aileen’s river, and also her siblings.

    OK, I know my spiritual responsibility. But does Aileen, or my children in general, know that this is a two way street? Children grow up, there is no eternal parenthood. The relationship changes from parent-child to parent-adult. The child becomes an adult.  More than any of my children, Aileen stayed in the child position, until perhaps she was 40 years old, and she revelled in showing disrespect for her father. 

    Although I am talking about Aileen, the context of the spiritual connection between parents and children, is for all my children. In another section I write about Tanya Reusche, my third wife. I had to divorce her because she essentially demanded that I forget Marta. All our fights were about Marta (and Marta’s mother). I told Tanya, repeatedly, it is impossible for me to abandon this principle, this responsibility. They are my children, in this world, and forever.

    So how did all this disfunctional situation with Aileen start? In my opinion, it started with keeping her alive and healthy in the bad years of GSD, and when had to undertake extensive and tiring auditory training. My position was mathematical. It was not a decision at all— simply there were things that had to be done. And, when Aileen rebelled against this hard position, she began to turn against me. I believe this with all my heart.

    In the lead up to the divorce, which by the way, was not a foregone conclusion, Aileen immediately jumped on the side of her mother. Her poor mother, incapable of standing up to the mean father in the eyes of a pre-teen, needed her help. The mean father was categorical, dictatorial, and uncompromising. In fact, she says, he’s just like his mother. This statement always amused me. (Does anybody really think that my father, a career military officer, was not a commanding officer? Nonsense. I was heavily influenced in my early life by my father’s manner– the manner of a senior officer in the Air Force.).

    I have made the point elsewhere that Aileen did not have all the facts to judge, but that didn’t stop Aileen in Sri Lanka, and didn’t stop her from continuing to judge me in Garner and Indianapolis. Even more, not only did she advocate her position with her mother, but she also made sure her brother and sister were equally “well informed.”

    From the early 90s, until the present (Aileen’s 40th birthday), twenty years give or take, Aileen has been aggressive and unpleasant to me, her father. For what reason? Did I ever do anything bad to her? My answer is unequivocally, “no.” 

    Aileen has carefully hidden from me most of her life over the past 20 years. She reveals tidbits to me from time to time. I’m pretty sure the same holds true with Lua and Nabil, but to a lesser extent. But she continues to seek the support of her mother, and for this, Carolyn has been wonderful and provided selfless support to Aileen and Analissa. However, not the kind of support that I would have given. There is a reason why children have both a father and a mother. 

    If Carolyn and I were together, and we consulted about Aileen’s problems, they would have been handled differently. Carolyn is too nice, and Gary #2 doesn’t seem to play a balancing role. I’m nice too, but a different kind of nice. My nice is: “I’m not going to compromise on principle.” Aileen will love that. Proof that her father is the dictator. However, what principles? Of course, in case of her health, the best doctors and what they advise. Or, moral principles taught by all the world’s religions, and very elegantly enunciated by Bahá’u’lláh and the central figures of the Baha’i Faith. Are these my principles? Am I wrong to put them first? Let the reader judge. I’m not afraid of God’s judgment on this matter.

    Since the early 1990s, I have not been allowed to play any kind of role in Aileen’s life. I never had enough information to participate in consultation, and I was never invited. The door was never open. Standing behind it was a daughter that didn’t want to hear anything that her father said. 

    Somewhere in the depths of her soul, Aileen knows that many of the choices she has made in her adult life were not very good. She made these choices with open eyes, knowing that some of them were against her upbringing. She knew that her father and mother would not be happy with some of her decisions, but she also knew that her mother would support her no matter what and that her father would insist on principles. So, afraid of being judged, she hid from me and others the details of her life.

     She still has time to achieve her potential. She has a good heart and a lot of potential. But, at 40, she is running out of time.  I wish we could have talked over the years– debated, disagreed. Been close like father and daughter. Since the divorce the internet has made it possible to be in touch 24/7. Not ideal, but so much better than nothing. Perhaps if we were closer, our discussions could have been helpful. Then I would have been her father and maybe I could have added something positive to her life, and she could have contributed to mine. Isn’t that how it should work? What else would I want? 

    “Holding on to anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned.”
    ― Gautama Buddha

    “You will not be punished for your anger; you will be punished by your anger.”
    ― Gautama Buddha

    In one picture, below, Aileen was 40 years old, with her daughter Analissa (Sept 2016). There is a picture from Nov 2017 with Jimjim Britt. Everything I know about him is good. God willing he will find happiness with Aileen, and they will live together unified and supportive. There are rumours about their marriage, but also difficulties that need to be solved first, concerning his ex-wife.

    Since she fell in love Jim, Aileen has begun a new life. At least, that is what I see from afar. I am optimistic that the change is permanent. She has much capacity, she is an activist fighting for the rights of her clients, and she is a strong believer in God and the moral reality of life. God willing, she will now really bloom. It would be nice if I could see this, but, alas, too far away and the world is falling apart (I’m writing in 2020, and the scientists give us 11 years to change. So far, the world is just accelerating its destruction, with no sign of changing). So, I’ll wait for a meeting in another world, and we’ll compare notes.

    This picture (2017, family reunion in Chicago) is interesting. First there is Aileen. She is smiling— sort of. This smile is implies something else, probably some sharing of stories between the siblings. Lua is showing patience and tolerance– sort of. Actually, she appears to be “holding something in” and waiting for the picture to be taken so that she can leave. Nabil, aloof and trying (unsuccessfully?) to find a middle ground.