SURPRISED BY JOY: Mother’s Stories of Child DisAbility
This book is first for the desperate parent, hearing or thinking for the first time that something is wrong. You have watched your child fail to meet milestones, have sluggish feeding and activity. Sudden, horrible words like “pervasive developmental disorder,” “autism,” or “mental retardation” may have shattered your assumption that your child was just a little lazy, a little slow to do the tasks that were so easy for brother and sister. This book tells you that the world has not ended, that your child will grow and develop and blossom in ways you cannot imagine.
Many of us lose dreams for our child but the loss is gradual. Parents who learn of a disability lose everything in moments. You imagine the worst, think everything is lost; you envision a bleak future of sadness and tragedy. Think again. Read these pages and know the possibilities of the child with differences. Read how these strong women, with or without supportive husbands, have incorporated these children into their lives, dealt with the sadness, met the obligations, moved on to happy, fulfilling lives. Your child, rendered so vulnerable by your fears or the harsh words of medical professionals, will give you so much. Read about these women and you will be, as C. S. Lewis was by his sudden faith, “Surprised by joy.”
I received my MD and PhD degrees from the University of Chicago in 1972 and did residency/fellowship training at Boston Floating Hospital, the National Institutes of Health, and the University of Michigan. I have spent 46 years in academic medicine doing general pediatrics and genetics, becoming an endowed full professor of pediatrics during 14 years at UT Southwestern Medical Center and Children’s Medical Center of Dallas. In 2003, I began private practice and continued academic work at the Texas Tech University Health Science Centers in Amarillo (Professor of Pediatrics, Obstetrics & Gynecology) and Lubbock (Clinical Professor of Pediatrics), now continuing the latter appointment to help with laboratory administration and genetic education. I emphasized research early in my career and was the first to report cloning of human DNA with my fellowship mentor Roy Schmickel in 1978, going on to conduct NIH-funded laboratory research on ribosomal RNA genes and peroxisomal disorders before focusing on clinical work in 1996. My research knowledge has contributed to a book on genomic testing (Wyandt, Wilson, and Tonk: Human Chromosome Variation: Heteromorphism, Polymorphism, and Pathogenesis and to this current book on the DNA of Ehlers-Danlos and Long COVID19 syndromes.
My experience in general pediatrics has directed my genetic subspecialty practice toward promoting the medical home as managed by all-important primary physicians, exemplified by my book Preventive Management for Children with Genetic Conditions: Providing a Primary Care Medical Home, 2nd Edition published by Cambridge University Press in 2006 with developmental pediatrician W. Carl Cooley. This perspective has prompted many articles for physician education including a house staff manual on genetics and development (see above) and those written or edited in my role as a member of the Board of Consultants for the widely circulated journals Consultant for Pediatricians and now its parent Consultant. I have also been active in parent education and am proud to have worked with the Down Syndrome Guild of Dallas in establishing and coordinating a Down Syndrome Clinic at Children’s Health that promoted a positive image of children with Down syndrome and educated many about their preventive health care. I continue this scholarly and educational work with EDS, as you can see by going to kindergenomeeds.com