Dear Theophilus
I feel that God has done so many great and amazing things in my life, that I would like to make an orderly account of them to encourage and inspire hope in Jesus. It is truly humbling to consider the riches of his favor and how he has brought me through many circumstances up to the present day. While I have tried to give just the facts as I experienced them, please forgive small amendments made in the interest of protecting people's privacy, etc.*
We weren’t thinking about having a second child at the time…
Our first had barely turned two and we were still both very young as parents. While we had never let finances be a factor in our decision to be married or have children, we hadn’t yet talked about a second child.
With our first child, we had gone back and forth on the name right up until she was born. We finally settled on a name that was inspirational, from the Bible, didn’t sound particularly strange in Japanese or English, and reflected our prayers for her.
One day as I prayed, I felt that small voice of the Holy Spirit speaking in my heart. Wouldn’t Rhema be a good name for our next child. Rhema also met our criteria, but I hadn’t considered it before, and since we weren’t really planning to have another child soon, it was surprising to me to get this word. I mentioned it to my wife and she agreed that it was a good name. The next day, we found out she was pregnant.
Rhema is a word used in the original Greek language of the New Testament. It means a spoken or living word, especially as used in the church today to contrast with just the written word of the Bible. The word of God as written word becomes a living word as we read it and it speaks to our life.
During the course of both of my wife’s pregnancies, I remember the building suspense in my heart. Until the child is born, it is not possible to be certain that it will be born healthy and as I had worked for a number of years as a helper for people with mental disabilities, I had seen first-hand the difficulties and heart break their families faced. It was a time of expectant joy tempered with constant prayer for the health of the mother and child.
When she was born, Rhema seemed very healthy. Our first child had had a little jaundice and needed time under a UV light, but not Rhema. We took her home and she began to grow.
At three months old, she slowly stopped drinking milk. I prayed for her and didn’t pay much attention, but my wife kept insisting that something was wrong. At the time I believed that it would be enough to just pray, but when the child not only stopped gaining weight but lost a little, my wife acted.
Taking the child to the hospital, we found that she was very ill. She would no longer take milk given to her without throwing up and needed to have it put directly into her stomach via a tube. She stayed in the hospital for about three months of care before she made a recovery. At the time, the doctors didn’t give us a diagnosis for what had caused the illness, or what had made it better, but we were happy to be united at home as a family again.
When Rhema turned three, she was attending the local childcare center for a few hours every weekday. That winter, a particularly strong infection (mycoplasma pneumonia) spread rapidly in Japan. Being fungal in nature, it doesn’t respond to normal anti-viral remedies. When it spread to Rhema’s childcare center and she came home with a cough that wouldn’t stop, we took her to the clinic and got the treatment from the doctor who had several other patients that year with the same thing. Based on his expectations, the cough and fever should go down after two weeks or so. Two weeks passed, and she did not recover. He did a battery of tests to see if some other bacterial or viral explanation could be found but came up blank. That evening as we prayed at home, I felt the Holy Spirit say, “Cystic Fibrosis” ... I had no idea of what this meant, I had no memory of having ever heard of such a thing. I looked up how to say it in Japanese and when we went to the doctor the next day, I asked him if it was a possibility. He responded with surprise. He’d never had a patient with cystic fibrosis before and said it was almost impossible considering the low prevalence in Japan. He did the test anyway though, and Rhema came up positive.
Cystic fibrosis is the most common deadly genetic disease in western countries. As a genetic disease inherited through bloodlines it has higher and lower prevalence among certain races and is almost non-existent in Asian peoples. At the time Rhema was diagnosed there were only 15 CF patients in all of Japan. The genetic flaw must be inherited from both parents to result in the disease, and many people are carriers whose bodies function normally without knowing that they carry the gene for CF.
Cystic fibrosis works at a cellular level in all the cells of the body. It interrupts the process for transfer of vital chlorine ions into the cell. Since it affects cells throughout the body there are symptoms in every system of the body. Most notably, in the lungs it causes formation of sticky mucus that must be discharged by coughing amounts measured in cups every day, since build up of the mucus in the lungs causes bacteria to spread rapidly resulting in high levels of inflammation as well as decreased lung function and the related general weakness and pain caused by low blood oxygen levels. Put more simply, it is like drowning from the inside, a case of pneumonia that never ends.
Historically, most children with CF would die at a very young age but with advances in medical technology, life expectancy was extended to close to 20 by the mid-1900s, and then with the successful double lung transplant first performed in Toronto, Canada, the new lungs without faulty genes could extend patients lives into their 50s or 60s. Other inhaled genetic medicines developed in the 1990s and later were able to help break down the mucus without damage to surrounding tissues and one such medicine was approved for use in Japan the year Rhema was diagnosed.
Praise be to God. You can experience him too.