our miraculous daughter




When I found myself pregnant at the age of 19 in an era when pregnancy without a partner was not acceptable and one was generally looked down upon for their wayward ways, and when abortion was not legal or a viable option, I decided that I would put the baby up for adoption. When my daughter was born at the old Letterman Hospital with Dr. Harry Beaver performing the delivery, I took one look at her and knew she was mine for the long haul. It turned out that I had passed on to my lovely daughter a genetic mutation that occurred spontaneously at conception and, to be discovered much later, it was so rare that there are only 17 other known cases in the world.  Initially the doctors thought that the physical problems were due to rubella (german measles) that I had been exposed to while I worked as a corspeman in the hospital  at Hamilton AFB. Due to this and the fact at that time the state was trying legalize therapeutic abortions, my daughter and I were interviewed by Walter Cronkite for his tv show. I was asked that if I had known that my daughter was going to have these anomalies, would I have elected to have an abortion.  My daughter was, at that point, a beautiful little girl of about 18 months. And I loved her with all my heart. My daughter had to have open heart surgery early on (and by the infamous Dr. Norman Shumway at Stanford Hospital, a pioneer in cardiac surgery), she had cataracts and subsequently develped glaucoma, and multiple other problems. She was transferred to UCSF medical center initially and later followed by Dr. Tarnoff at Kaiser San Francisco.

Throughout the years I discovered that althought my daughter had multiple physical problems, her brain was not affected. In fact, she is an extremely bright young woman. She managed, with limited vision, to graduate from Mercy High School with a gpa of 3.8, went on to Humboldt State University, worked in high school cleaning houses, working as a server in a food court, later in college worked in a home for very disabled people, found her way on buses, Bart, and has been generally independent throughout her life. She even at one point traveled to Europe on her own.

She found herself on SSI early on in her 20's and hated it.  She wanted desparately  to be independent . She found that the State Department of Rehab would assist her with computer studies. She had majored in education as a student but found, at that time, it was difficult to get into this field with limited vision. After completing the computer couse that rehab offered she was able to find a job at Wells Fargo working at night in the credit card department. In the interim she met her husband and became pregnant with her first child.

The morning that her daughter was born, we received a call from the hospital that her daughter had developed congestive heart failure. The feeling of dejavu was unreal for me! It was shortly after that we discovered that my daughter's physical problems were due to a spontaneous genetic defect. Her daughter had all the same anomalies that my daughter had but several that were more serious. However, the National Institute of Health invited us back to Bethesday, Maryland, several years ago to do more studies on both my daughter and grandaughter. It is still considered a very rare genetic disorder.

After the birth of her daughter, my daughter's glaucoma became worse, a surgical procedure was attempted to assist the drainage of fluid in the eye. It did not work and subsequently my daughter had to have an enucliation, i.e. her right eye had to be removed!

In the interim, my daughter has gone on to be promoted at Well Fargo into a vip position, after 19 years, she is currently working on her MBA, has successfully been a single parent  (her husband and her separated several years ago and are still friendly) of two children ( her son was born 12 years ago, perfectly normal. The genetic mutation only affects the females conceived and about 50+% of the time. If a male is conceived he would die in utero). She is now almost completely blind but has a special computer program at Wells that allows her to do her job. She has been praised  over and over by her supervisors at Wells, has received numerous awards, and is loved by her clients. She has gone though numerous surgeries due to her congenital problems and then six years ago found that she had breast cancer. She went through mastectomy, chemo therapy, radiation therapy, and lots of support groups, all this without a partner. She did have alot of family and peer support, thank God. After the breast cancer ordeal she suffered a brown recluse spider bite while playing with her children in their front yard. She was hospitalized and the infectious disease physician who cared for her said that she had never seen a recluse spider bite in real life, only in text books.

Several years ago her daughter, who had  also developed glaucoma at this point, was advised by her opthalmologist to have a drain put into her eye. Once again the procedure did not work and my grandaughter lost the vision completely in her right eye. She was ten years old. And until that time had vision enough that she probably could have driven a car at the age of 16. But that is no longer so. However, she is now 15 and is taking courses this summer to be a camp counselor and wants very much to work next year, if possible, at Enchanted Hills Camp in Napa. This is a camp started by Rose Resnick/Lighthouse for the Blind. My grandaughter has attended that camp every year for the past four years. My grandaughter also skis, she is going to Colorado this summer to rock climb, white water rafting on the Colorado river, horseback riding, and, of course, she will fly to Denver on her own.

I decided to write this article because my daughter and grandaughter are miracles to me and my family. My husband, who adopted my daughter when she was three, and I are proud of all of our children, but we feel so incredibly blessed with these two miraculous people, especially our daugher.

 

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