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I am tamra's father

The doctor told us that Tamra's skin discolorations were called cafe au fait spots, because they are the color of milk and coffee. They were an indication that Tamra had neurofibromatosis, more commonly called NF. Can you pronounce it? We couldn't. The doctor explained that NF is a dominant genetic disorder, but since Deanna and I showed no signs of the disease, Tamra's condition was a spontaneous genetic mutation.

NF is one of the most common genetic disorders, the doctor explained, occurring in one out of 4,000 newborns. Half of those cases are, like Tamra's, the result of a new mutation. People with NF develop tumors--called neurofibromas--of the central nervous system, nerves (including the auditory and optic nerves) and skin. The tumors are usually benign, but may be removed if they are painful or press on other body structures. The doctor continued with a list of other possible problems--bone deformations, learning disabilities, high blood pressure and itching.

My hearing seemed to turn off after a while, but it awakened to the doctor saying, "...used to be known as the Elephant Man's disease."

Back up a minute--"Elephant's Man's disease?" I asked

The dermatologist explained that for a long time NF had been associated with Joseph Merrick, the so-called Elephant Man, but it had been recently discovered that Merrick's condition was Proteus syndrome, not NF.

What are the odds?

I couldn't have identified my emotions at this point; it was as if everything inside of me had gone dead. We listened to the doctor further explain that many people with NF have no significant health problems, and go on to have careers and families. The doctor told us that the odds were that Tamra would not have significant problems. But what did odds mean at that point? I mean, what were the odds of us having a child with NF in the first place?

Indeed, a few weeks later, we brought Tamra back to the dermatologist with a mumps-like swelling under her left jaw. Surgery to ensure that the tumor was benign confirmed neurofibromas on her facial nerve, which couldn't be removed without causing facial paralysis. What else did the future have to offer?

Running away

Work became just a way to pass the time. I shut out my fellow workers, conserving my energy to put on a brave face for my family at home. I burned off my anger and fear by putting on my running shoes and running as far and as fast as I could--which was neither very fast, nor very far. I learned that nobody can tell whether runners are happy or sad; mostly they just look tired, which I was. I came home drained, but sufficiently free to present an optimistic face to my family.

After a child is diagnosed with a disability, it seems fathers often act as if nothing is wrong, while mothers act as if their world has come apart. But eventually, most parents come together in attitude. The mother realizes that there can be life with the disability, and the father realizes that the disability exists.

I, too, had to face my anger and fear. I thought about what life was like before Tamra's diagnosis, and I asked myself what had changed the day the doctor gave us a name for her condition. Tamra hadn't changed--she had always had NF; I just didn't know it. So what had changed? I had.

Controlling what we can

I feared the uncertainty of the future. I knew there was nothing we could do to prevent Tamra's tumors; we could only react to them once they appeared. I felt powerless.

For two weeks after Tamra was diagnosed with NF, I couldn't stop crying. Then I returned to the basics--got the facts, educated myself, prepared. I learned to enjoy life again; I did not ignore Tamra's condition, but I also didn't let the fear of it dominate my life. It has been a long, eight-year struggle. I had to learn that NF will not go away and that I will survive.

I've also come to believe that the best-adjusted adults with disabilities come from supportive families. This is something my wife and I can control. We believe that our daughter's attitude toward life will be a reflection of our own. No matter what happens, we try to overcome problems as a family. Tamra's self-confidence reflects our conscious decision not to fear NF.

Continuing the marathon

Rather than suffer from hopelessness, we've redirected our energy and much of our free time into working with our local NF chapter. I treat NF as a marathon--one foot in front of the other, one day at a time.

In many ways, my life has become richer because of Tamra's NF. It would have been easy to spend my time and energy pursuing the American dream of the greenest lawn, the cleanest car and the most toys. Now, my rewards are different--the smile of a child selling lemonade to support NF research, the handshake of a parent who needed to talk, and the knowledge that, no matter how small our successes, we've fought hard.

Fathers' Voices is a regular feature of Exceptional Parent magazine. This column, coordinated by James May, Project Director of the National Father's Network, focuses on fathers' experiences rearing children with special needs. Your contributions to this column are encouraged.

For more information about the National Fathers' Network (NFN) or to receive their newsletter, write or call: National Fathers' Network, the Kindering Center, 16120 N.E. Eighth Street, Bellevue WA 98008, (206) 747-4004 or (206) 2849664 (fax). Funded by a Maternal and Child Health Bureau grant, the NFN networking opportunities for fathers; develops support and mentoring programs; and creates curriculum promoting fathers as significant, nurturing people in their children's and families' lives.

Bob Miyamoto is a research physicist and oceanographer at the Applied Physics Laboratory at the University of Washington His wife, Deanna, is an art director at Image Ink Design Studio. The Miyamotos live in Bothell, Washington, north of Seattle, with their daughters, Tamra, 10, and Leah, 5. The Miyamotos are very active in the Washington state chapter of the Nation Neurofibmatosis Four Bob served as chapter president from 1990 to 1994; he is currency the chapter's vice president. The family also enjoys swimming, skiing and hiking.